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982 thoughts on “Does Everybody Have Chronic Lyme Disease? Does Anyone?

  1. windriven says:

    No. Two reasons.

    PTLDS does not seem to exist outside the minds of a few fanboyz;

    A Pubmed search disclosed not even a single case report of the claim of PTLDS transmission by transfusion.

    Hypothetically, are you concerned about the NSA reading your thoughts when you go out without your foil-lined hat?

    1. Windriven – I think it’s CLD (Chronic Lyme Disease) that doesn’t exist outside the minds of fans and PTLDS (Post Treatment Lyme Disease Syndrome) that is recognized by the CDC.

      http://www.cdc.gov/lyme/postLDS/

      One problem is that some of folks want to use the terms interchangeably, but they can’t be.

      But you are spot on with the zero case reports of transmission by transfusion. I’m guessing if I was in bad enough shape that I needed a blood transfusion, eliminating the risk of a disease that had never been reported to have been transmitted by blood would be pretty low on my priority list.

      1. windriven says:

        Thanks for the correction mouse!

      2. Pam says:

        Do your research – if PTLDS were truly just something people were left with after the use of antibiotics, then why would more treatment get them to where they either had no more symptoms or at least much less symptoms?

        1. vadaisy says:

          They could have had an infection, and the lingering post-treatment symptoms diminished over time. They could have never had an infection, but instead had or have another illness that also has flares, such as MTR describes with autoimmune diseases. There could be a multitude of reasons, and yes, of course, there are some people who don’t get treated adequately or appropriately, but that is why you need to go to an Infectious Disease specialist. At this point, I certainly would not recommend any tick-borne specialty society or similar associations which you seem to be promoting and are rife with questionable practitioners and protocols.

          1. Pam says:

            An Infectious Disease specialist? Are you kidding me? I went to many of them in many different states and the best answers that the could give me was I don’t know, it can’t be Lyme though. And I’m far from the only one who has come away with that kind of an answer from ID docs. That’s why I choose to help all that ask me with these diseases.

            The only ones who question ILADS are those that are afraid of the scientific evidence that’s out there. And why wouldn’t one go see a specialist that has studied the exact infections they have? Infectious Disease doc’s are not specialists for tick-borne infections. Read the aritlce on PubMed no less – about how IDSA standards/ guidelines rate:
            http://www.ncbi.nlm.nih.gov/pubmed/20946067

            Open your eyes people!! The evidence is out there if you are brave enough to acknowledge it.

          2. “and why wouldn’t one go see a specialist that has studied the exact infections they have?”

            Because:

            a) It’s considered valuable to determine that one has something before seeking treatment.
            b) To someone who only owns a hammer, just about everything looks like a nail.

            “Read the aritlce on PubMed no less – about how IDSA standards/ guideline”

            I did…You don’t appear to have.

            “The evidence is out there if you are brave enough to acknowledge it.”

            So other than a study about ILADS that you seem to have misapplied…what other evidence do you have?

          3. WilliamLawrenceUtridge says:

            I’m not afraid of the scientific evidence that’s out there. I’m just pointing out that it’s not convincing. You have to torture it to justify your idee fixe of CLD.

          4. Dama Lewis says:

            Infectious disease specialists are horrible at identifying Lyme disease in its late stages. Horrible!

          5. WilliamLawrenceUtridge says:

            What’s your basis for this comment? Because they didn’t give you a diagnosis of Lyme disease but an LLMD did? If you’ll read the post, and in particular the links, this is probably because the LLMDs use a vague list of symptoms and flawed tests by private labs (that you pay for out-of-pocket) rather than anything validated as having the appropriate false positive/false negative ratios.

            Someone must have linked to a CLD forum, there’s a grapeshot of new comments.

  2. Camp Other says:

    vadaisy said:

    “Directly quoting the CDC website: The exact cause of PTLDS is not yet known. Most medical experts believe that the lingering symptoms are the result of residual damage to tissues and the immune system that occurred during the infection. Similar complications and “auto–immune” responses are known to occur following other infections, including Campylobacter (Guillain-Barre syndrome), Chlamydia (Reiter’s syndrome), and Strep throat (rheumatic heart disease).

    The evidence and consensus point towards PTLDS as being the result of residual damage to tissues and the immune system that occurred during the infection. At this time there is not sufficient evidence to indicate that a syndrome or disease complex known as “chronic Lyme disease” exists separate and distinct from PTLDS and requiring chronic antibiotic treatment.”

    I understand that, however, if most medical experts think that damage and or autoimmunty are the cause, then why has the NIH-NIAID continued to fund the following studies?:

    Searching for Persistence of Infection in Lyme Disease
    http://clinicaltrials.gov/ct2/show/NCT01143558?term=Lyme+disease&rank=1

    Excerpt from project description:
    “Although antibiotic therapy is clinically effective in treating the symptoms of Lyme disease for most patients early in the course of disease, a significant number of patients who receive therapy report persistent symptoms. The cause of persistent symptoms after antibiotic therapy for Lyme disease is an area of great controversy. Recent studies have shown that the organism (Borrelia burgdorferi) may persist in animals after antibiotic therapy and can be detected by using the natural tick vector (Ixodes scapularis) to acquire the organism through feeding (xenodiagnosis). Whether this occurs in humans is unknown. Currently available tests for human Lyme disease do not allow determination of persistent infection after antibiotic therapy.”

    Evaluation of Lyme Disease: Clinical, Microbiological and Immunological Characteristics
    http://clinicaltrials.gov/ct2/show/NCT00001539?term=Borrelia&rank=7

    Excerpts from project description:
    “This study will determine whether patients who have been infected with the Lyme bacteria, Borrelia burgdorferi, and treated with antibiotics still have the bacteria alive inside them and whether it is causing their symptoms. The information from this study may serve as a basis for developing stringent diagnostic criteria for Lyme disease and the establishment of future treatment trials.

    Individuals in the following categories may be eligible for this study: chronic Lyme disease; chronic Lyme arthritis; seropositive control (are infected with the bacteria that causes Lyme disease but do not have disease symptoms); recovered control (have been sick with Lyme disease but were treated successfully and are currently well); control with multiple sclerosis (patients with multiple sclerosis); and healthy volunteers. Patients in the chronic Lyme disease category must be age 13 and above; all others must be age18 and above. Candidates will be screened with blood and urine tests.”

    “Despite how much has been learned about Lyme borreliosis in the past decade, there are still many remaining areas of uncertainty. One fundamental question is whether persistent signs and symptoms of disease, despite the administration of what is currently considered to be adequate antibiotic therapy, are due to ongoing active borrelial infection, to a post-infectious syndrome, to irreversible sequelae of earlier tissue injury or due to a condition unrelated to Lyme disease. Reliable objective markers of infection, of clinical status and of host responses to the organism are required to discern the scope and the implications of persistent borrelial infection, the effectiveness of current treatment options, and the development of new therapeutics approaches. The goal of this study is to assemble and follow a well-characterized cohort of patients with post-Lyme disease syndrome and relevant controls that will yield a prospective database upon which stringent diagnostic criteria can be established and future therapeutic trials can be designed.”

    (Side note: Inclusion criteria lists “Chronic/Post Lyme Disease (CLD) patients” as one group of patients qualified for enrollment.)

    Persistent Lyme Empiric Antibiotic Study Europe (PLEASE)
    http://clinicaltrials.gov/ct2/show/NCT01207739?term=Lyme+disease&rank=13

    The Phenomenon of “Chronic Lyme”; an Observational Study
    http://clinicaltrials.gov/ct2/show/NCT01151150?term=Lyme+disease&rank=29

    These are just a few clinical trials. But they are about searching for the cause of Lyme disease patients’ post antibiotic treatment persisting symptoms – including the possibility of continued infection.

    Why spend tens of thousands if not hundreds of thousands of dollars on such research? Why include these studies in the 25% (and now less, more like 16%) of all RO1 grants applied for which get accepted for funding when most experts support a model of post-infection damage and autoimmune reactions in Chronic/Post Lyme disease?

    And this isn’t just limited to clinical trials. Why consistently fund Dr. Stephen Barthold’s research on persisting infections in post-antibiotic treated animal models? He’s spent 30 years of his career doing this kind of work.

    Some people say this kind of research is being done to make Lyme disease advocates feel like their issues are being addressed. This never made sense to me, because the ALDF (American Lyme disease Foundation) does not support a model of persistent infection after antibiotic treatment – yet Dr. Barthold has been on their science advisory board and is consistently funded year after year to do post-antibiotic persistence studies on Lyme disease.

    If you know anything about the sociopolitical world of chronic Lyme disease, it would become clear how odd this seems to advocates and activists because many Lyme disease activists do not like the ALDF, and think that their perspective and ideas about Lyme disease are flawed.

    I am open to chronic Lyme/Post Lyme being caused by any of a number of things including an autoimmune reaction. But is the issue of causation resolved? Science is ultimately going to determine what is going on, and it appears based on funding studies such as the above that causation has not been resolved in the opinion of at least some portion of medical experts.

    1. weing says:

      “Science is ultimately going to determine what is going on, and it appears based on funding studies such as the above that causation has not been resolved in the opinion of at least some portion of medical experts.”

      Because science is always double checking. If the results of these studies show that giving antibiotics long term helps, that there is persistent infection and the indicators of it, new guidelines will be drawn up and I will incorporate them into my practice. If the results show the opposite, I will continue to follow the current guidelines. What will you and your CLD buddies do if the studies show that the current guidelines are fine and that the treatments your LLMDs recommend are without scientific basis? Who is open to change?

  3. Camp Other says:

    re mousethatroared and williamlawrenceutridge:

    mousethatroared said:

    “CampOther – this is the whole point I have been trying to make. You continue to think of auto-immune disease as caused by Lyme Disease and therefore the diagnoses of Chronic Lyme Disease is appropriate. But that is NOT the case, if you have rheumatoid arthritis or SLE or ankylosing spondylitis, even if you had a verified case of lyme disease and treatment that was the first symptoms of the disease, then you have those auto-immune diseases and should be treated for those auto-immune disease. Just like if you had a verified case of strep, pneumonia, sunburn, pregnancy… all things that can be the first trigger for an auto-immune disease flare.”

    williamlawrenceutridge replied to them:

    “And THIS is why SBM needs a “like” button for comments.”

    Camp Other responds:

    I think you missed what I stated in a comment upstream:

    “Well, there are already case studies and preliminary larger scale studies demonstrating the possibility persisting symptoms could be caused by an autoimmune reaction due to Lyme disease. But one has to distinguish these from developing an autoimmune condition independently – say one which developed due to a genetic predisposition. Otherwise, it isn’t cause and effect – it’s only correlation.”

    1. Pam says:

      Many, many doctors are finding out that if Lyme disease if first treated, many of the autoimmune issues like SLE, Rheumatoid Arthritis and others either go away completely, go into remission or the symptoms are at least reduced greatly. So, please tell me why wouldn’t you want people to feel better?

      1. So you are telling me that many, many LLMD’s claim they can treat SLE, Rheumatoid Arthritis and other auto-immune diseases with long term antibiotics?

        At least your willing to admit that these doctor’s are including AI diseases, NOT ruling them out with a differential diagnoses.

        Show me the studies that show this.

        Because in all those diseases an infection can trigger a flare, sometimes a first flare (as can hormonal changes and some chemical exposures). But I have never seen ANY evidence that long term antibiotics treatment for lyme disease has any effect on the number of flares or the progression of the disease.

        There are proven medications for those disease and patients require knowledgable medical monitoring for risks like kidney or heart involvement. This is not something they would receive from a doctor who refuses to believe that lyme disease is not the root of all disease.

        Not only does long term antibiotic use associated with lyme disease have NO proven benefit for AI disease, the dangers to the patients are increased over that of the average patient. AI patients can have low complement levels as a consequence of their disease. This makes them more prone to infections. Long term antibiotics use is a process that breeds antibiotic resistant disease.

        Patient more prone to infection + Non-theraputic intervention, breeding antibiotic resistant disease = Useless Danger

        1. whencarsfly says:

          @MTR – “Long term antibiotics use is a process that breeds antibiotic resistant disease.”

          Reeeeeeally?!

          “The good news: Antibiotics didn’t create antibiotic-resistant bacteria. The bad news: Antibiotic-resistant bacteria is everywhere.”

          http://www.psmag.com/science/living-bacterial-world-66260/

          1. @Carsthatfly

            Read your links.

            At no point does this article suggest that using long term antibiotics doesn’t increase the risk of antibiotic resistant infection in the patient. In fact it states.

            “While there is no question that our overly aggressive use of antibiotics has contributed to the rapid spread of drug-resistant pathogens, resistance was going to show up sooner or later regardless of how judiciously we used antibiotics. Cutting down on our antibiotic use at this point is important, but it is a delaying action; we need a new strategy.”

        2. Pam says:

          Then tell me why it’s okay for Dermatologists can prescribe these same antibiotics, at the same dosage, with open-ended scripts for acne and yet the doctors that are prescribing them for a very serious and potentially life threatening infection are being told it’s unnecessary and wrong?

          Oh, wait – there is NO excuse for this. I’ve never heard of an epidemic of acne, have you? And if 300,000 new cases a year for Lyme disease isn’t an epidemic, then you are on the wrong planet, since those numbers only reflect the US and not what the rest of the world is seeing.

          Oh, wait – that’s right you don’t want to see the truth. I forgot. Forgive me for using up so much of your time when you have no desire to even consider that there could be something to 300,000 people a new having the same infection(s). I bet you didn’t even know that it’s unusual for someone to just have Lyme disease, or that there are over 300 different presentations to Lyme disease, or that Babesia is in our blood supply here in the US, that Bartonella can present as psychological or constitutional issues.

          Like I keep saying, you really should do your research before trying to comment or write a “story”, much more so when someone is relying on you to base their health care needs on what is written. It’s actually the misinformation like what you all put out that is the most harmful.

          One day you or a loved one will have this disease or the truth will finally come out and let me tell you….I sure won’t be the one with “egg on my face” – it will be all the naysayers that refused to do their own research.

          My Mother-in-law had symptoms that were ignored and she was told she ONLY had some indigestion by her doctors. They finally moved and saw other doctors in the state they moved to, but it was too late – the tumor that had been growing in her giving her said indigestion was the size of a grapefruit by then – thanks to the “unbelievers”.

          The same thing is going on here.

          I was told that I had a number (8) of different conditions rather than the doc admitting that it was only one disease. When I first was starting to look at the possibility of having these diseases, I too was doubtful of all that was being claimed, but when all other doctors fail to help you and you are told to go home and prepare to die, if your smart, you start to do your own research.

          So I pursued treatment on my own, and now all of my symptoms are gone – coincidence? I think not. I had/have chronic Lyme, chronic RMSF, chronic Bartonella, chronic Babesia and more.

          It’s clear to me that those that are the naysayers here are very close minded and because of this will, one day, be compensated for their close mindedness.

          1. WilliamLawrenceUtridge says:

            Acne is real and antibiotics are a proven treatment.

            Yes, it would be better if we saved antibiotics for life-saving interventions (though I don’t know enough about acne to know if the antibiotics used to treat it can be used to better effect elsewhere – antibiotics are inherently specific).

            Again, we don’t hate CLD or have some sort of irrational prejudice against it – we just keep pointing out that you haven’t come anywhere close to demonstrating there is scientific support for your conclusion. Nobody argues that Lyme isn’t a serious disease, only that it doesn’t cause CLD.

            And again, Dr. Hall didn’t write a novel article reinterpreting Lyme disease – she wrote an article summarizing the mainstream expert medical opinion on the topic.

            And finally – a missed or incorrect diagnosis does not magically create the scientific evidence to justify a wholly novel hypothesis. At best, your anecdote indicates that diagnosing Lyme is difficult, not that CLD exists.

        3. Dama Lewis says:

          The better LLMDs understand that there could be auto-immune factors at work also, and treat appropriately. They treat the body as a whole. It would be nice if some would give Dr. Horowitz’s book a chance and not completely dismiss it before it has even been published. You might learn a few things.

          1. WilliamLawrenceUtridge says:

            They treat the body as a whole

            What does that even mean? Does your doctor examine your head, then stop?

            Why did Dr. Horowitz publish in the form of a book, rather than, say, a series of peer-reviewed articles? Why did Dr. Horowitz publish with St. Martin’s Press, which is macmillan’s popular arm apparently, and not a scholarly publisher? Macmillan’s scholarly press are is Palgrave, and even that is mainly social sciences and humanities, their “science” category appears to be more about the popularization of science than actual science.

  4. windriven says:

    “http://clinicaltrials.gov/ct2/show/NCT00001539?term=Borrelia&rank=7″
    States its objective as: “To determine whether xenodiagnosis can be used to successfully investigate the presence of Lyme disease bacteria.” This would be a valuable tool and is good basic science.

    “http://clinicaltrials.gov/ct2/show/NCT01207739?term=Lyme+disease&rank=13″
    Is a European, university funded study. Clearly they believe it is worthy of study. Will you accept a negative finding if it works out that way?

    “http://clinicaltrials.gov/ct2/show/NCT01151150?term=Lyme+disease&rank=29″
    Is a Norwegian study that was completed more than two years ago yet has not reported any results. The purpose of the study was to possibly generate hypotheses, not to test any particular one. I don’t see how it really fits your argument.

    You ask, “Why spend tens of thousands if not hundreds of thousands of dollars on such research? ”

    Why indeed? NCCAM spends ~$100,000,000 each year, most of it studying pure nonsense. In a world wracked by poverty and disease it seems almost criminal to spend that kind of money studying magic water and magic needles. The first study you cited sounds to me like good basic science. If I were on an award panel I could support that. The other two are funded by a foreign university and a foreign hospital respectively. You would have to ask them why they chose to fund those studies.

    1. Camp Other says:

      windriven,

      I agree that the first study is a good study, and I’d like to see more similar studies to benefit Chronic Lyme/Post Lyme patients.

      I accept the outcome of a given study on longer term antibiotic treatment having a negative or mixed outcome. The question for me is whether or not another study of this kind what we really need next – or if we need something innovative and also need to take existing animal studies a step further.

      Dr. Barthold and others have provided evidence of persisting spirochetes in antibiotic-treated animals, and Dr. Bockenstedt has provided evidence of trapped antigens in knee joints of antibiotic-treated animals. They suspect that either these spirochetes may persist in some human patients after treatment or trapped antigens do, and they may be the cause of their ongoing symptoms.

      It would seem beneficial pursue studies which confirm these findings as they apply to human models of chronic Lyme/post Lyme, and develop treatment trials based on these findings: Test a drug combination which could treat patients with antibiotic tolerant spirochetes, if that’s the situation – or some method of breaking down those trapped antigens so they no longer cause an inflammatory response and potentially lead to an autoimmune condition.

      As things are now, one of the reasons unproven treatments and pseudoscience have been able to take root and grow over a condition such as chronic Lyme/post Lyme is that there is no new evidence-based treatment which directly addresses it. Therefore, patients will try anything and everything – particularly if their symptoms are life disrupting and severe.

      One can criticize those who use unproven treatments and point out that there are both known and unknown risks which come with such treatments and questionable benefits (especially if the treatment never had any studies completed to determine the risks and benefits) but in the meantime, there’s nothing to fill the evidence-based void.

      1. windriven says:

        “One can criticize those who use unproven treatments …[but] there’s nothing to fill the evidence-based void.”

        One can indeed criticize those using unproven treatments and can excoriate those promoting those treatments outside of carefully controlled clinical settings.

        As to the evidence based void, the following statement from CDC sums up the current state of the art:

        From CDC:
        “Regardless of the cause of PTLDS, studies have not shown that patients who received prolonged courses of antibiotics do better in the long run than patients treated with placebo. Furthermore, long-term antibiotic treatment for Lyme disease has been associated with serious complications. The good news is that patients with PTLDS almost always get better with time; the bad news is that it can take months to feel completely well.”

        That last statement bears considering.

        1. Camp Other says:

          I submitted a comment here and it got hosed somehow. Shorter comment this time…

          windriven said:

          “The good news is that patients with PTLDS almost always get better with time; the bad news is that it can take months to feel completely well.”

          That last statement bears considering.”

          If only that were always true. Some people do go on to have chronic Lyme/post Lyme for years, and some people have more debilitating courses of it than others.

          1. “If only that were always true.”

            If this is any kind of argument, it’s a bad one as it’s an arbitrary standard of evidence. Why not just say “If only people never got sick”, “if only vaccines didn’t have exceptionally rare side effects”.

            “Some people”

            Again with the “some”.

            “do go on to have chronic Lyme/post Lyme for years, and some people have more debilitating courses of it than others.”

            …and the longer it goes on and the smaller the group (or the larger the asymptomatic group), the more variability. The less likely it has anything to do with Lyme.

        2. Dama Lewis says:

          Well, there are issues with those tired studies that keep being trotted out to defend the IDSA position. Off the top of my head, they were done on patients that had already shown antibiotic resistance, they were done only on patients that had clear EM rashes, the Lyme symptoms considered were very narrowly defined, and the treatment periods were very short considering what LLMDs and their patients see are effective for long-term antibiotic treatment.

          As far as complications go – yes, there are serious complications from long-term antibiotic therapy. Doctors like Horowitz have protocols for avoiding and/or monitoring for those complications.

          The last statement would make sense considering that Lyme is similar to relapsing-fever type bacterias. Anecdotal evidence in the Lyme community does not bear this statement out, however.

          1. WilliamLawrenceUtridge says:

            Where are the studies justifying Dr. Horowitz’ practices and beliefs though? Where are the empirical comparisons showing Dr. Horowitz and similar practitioners’ treatments are superior to placebo or usual care?

  5. “Well, there are already case studies and preliminary larger scale studies demonstrating the possibility persisting symptoms could be caused by an autoimmune reaction due to Lyme disease. But one has to distinguish these from developing an autoimmune condition independently – say one which developed due to a genetic predisposition. Otherwise, it isn’t cause and effect – it’s only correlation.”

    Yes, one would have to distinguish these from other autoimmune conditions. Does the autoimmune reaction that seems to be triggered by lyme have any sort of distinct autoantibody profile?

    1. Camp Other says:

      mousethatroared said:

      “Yes, one would have to distinguish these from other autoimmune conditions. Does the autoimmune reaction that seems to be triggered by lyme have any sort of distinct autoantibody profile?”

      In terms of Lyme arthritis which is antibiotic-refractory, there is a distinct autoimmune pattern and molecular mimicry is suspected to play a role in its development.

      Patients who develop Lyme arthritis which is antibiotic refractory tend to have a specific genetic haplotype other patients with Lyme disease do not – patients presenting with joint inflammation post-antibiotic therapy have a higher frequency of HLA-DRB1*0401 (DR4) and related alleles. Lyme patients who are able to resolve arthritis within 3 months post-infection show an increased frequency of the HLA-DRB1*1101 (DR11) allele. This HLA-DR linkage prompted the hypothesis that antibiotic-refractory Lyme arthritis represents an autoimmune disease, where the inflammatory response is perpetuated by a self-protein after elimination of the causative agent, Bb.

      See: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2828865/ and for an article geared towards a wider audience, see: http://www.whatayear.org/02_10.html

      There are also more articles in citations which build the case here. One title sums up the hypothesis well: “Binding of outer surface protein A and human lymphocyte function-associated antigen 1 peptides to HLA-DR molecules associated with antibiotic treatment-resistant Lyme arthritis.”

      In terms of other manifestations of Lyme disease post-treatment symptoms, there are less data and there have been fewer studies. (Just about everyone wants more studies in this area, but there is limited funding.)

      A summary of what I know about which has been collected on the latter thus far:

      - Proteomics study has revealed that Chronic Lyme/Post Lyme patients have the presence of specific proteins in their CSF which differ from healthy controls and patients with CFS/ME. Study is ongoing; was undertaken to try to find biomarkers for CL/PL.

      Which of these may correlate with autoimmunity? Don’t know – studies continue.

      Distinct Cerebrospinal Fluid Proteomes Differentiate Post-Treatment Lyme Disease from Chronic Fatigue Syndrome:
      http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0017287

      - Elevated antineural antibodies are found in patients with Chronic Lyme/Post Lyme; the hypothesis by Dr. Armin Alaedini is patients were infected for a long time and have a different antibody profile from those who recover from Lyme disease.

      Anti-neural antibody reactivity in patients with a history of Lyme borreliosis and persistent symptoms. Free full text:
      http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2897967/

      - Evidence of development of antiphospholipid antibodies in some Chronic Lyme/Post Lyme patients:
      http://www.ncbi.nlm.nih.gov/pubmed/21729977 – significance unclear; may not be reliable marker but cross-correlates.

      There are also studies on CXC13 in diagnosing Chronic Lyme/Post Lyme, but so far as I can see, it is not a reliable marker because it is too non-specific.

      It’s a work in progress – I’m looking at research on different aspects of chronic Lyme/post Lyme. I’m learning about it.

      1. Nashira says:

        @CampOther: And you’re still assuming that Lyme has something to do with folks with yours or similar symptoms, that it is the One Big Sickness to rule them all, without accepting that sometimes diagnoses are wrong. Sometimes, we have more than one thing wrong with us. Sometimes, we don’t have the originally diagnosed condition at all, even without “CLD” or “MCS” or another dubious condition involved.

        I know it is hard to deal with or accept the knowledge that maybe one will be disabled or sick for years. I know it seems to make our suffering more valid when there is a single diagnosis that “fits” our widely varying symptoms and impairments. I have had a particularly nasty form of neuropathy *and* chronic migraines *and* a panic disorder, for the last ten years. (Tho praise Buddhathulu, after finding out it’s multiple different conditions, between meds and actively managing anxiety, I am finally able to work fulltime and am considering university again.) I know it’s hard and that it sucks to find out you were wrong. It is still worth doing.

        1. Camp Other says:

          Nashira said:

          “@CampOther: And you’re still assuming that Lyme has something to do with folks with yours or similar symptoms, that it is the One Big Sickness to rule them all, without accepting that sometimes diagnoses are wrong. Sometimes, we have more than one thing wrong with us. Sometimes, we don’t have the originally diagnosed condition at all, even without “CLD” or “MCS” or another dubious condition involved.”

          Oh, I have no way to confirm what other patients have who discuss it online. Does anyone? In offering anyone support online – whether they tell me they have cancer, lupus, or chronic Lyme/post Lyme, I take their word for it as just about anyone would unless I have solid evidence against it. Either way, if someone is a good friend of mine and the diagnosis is serious, the doctor is uncertain, or I think the diagnosis doesn’t seem to fit, I’d advise them to get a second and possibly third opinion. All with the caveat that I’m not a medical professional, of course.

          I’m not claiming Lyme disease or chronic Lyme/post Lyme is the cause of everything, of every condition with unexplained symptoms or that it causes MS, ALS, and a host of other conditions. If you’re familiar with the claims of others online, you’ll see they’ve already gotten the corner on that market of conjecture.

          In other words: Not everyone has had Lyme disease, and not everyone goes on to develop chronic Lyme/post treatment Lyme disease. In fact, most people who get Lyme disease go on to be fine with early treatment.

          For those who do develop a genuine case of chronic Lyme/post Lyme, researchers are trying to figure out what immunological changes take place in people who develop the condition and why it occurs (e.g. autoimmune, immune dysregulation; persisting infection, other causes).

          “I know it is hard to deal with or accept the knowledge that maybe one will be disabled or sick for years. I know it seems to make our suffering more valid when there is a single diagnosis that “fits” our widely varying symptoms and impairments.”

          It’s not just difficult to accept the disability or illness. That’s only just the beginning, even though it scrapes on its own. It’s the impact disability and illness has on one’s ability to function as a normal human being, and be productive in the world on a consistent basis. It’s all the time lost and opportunities missed, debt generated, and social cost. All of this and then some.

          I’ve already seen doctors and specialists, and they think that contracting Lyme disease has left me with some nerve damage from it as well as other symptoms. I just happen to be one of the unlucky people who ended up in this situation. It happens.

          “I have had a particularly nasty form of neuropathy *and* chronic migraines *and* a panic disorder, for the last ten years. (Tho praise Buddhathulu, after finding out it’s multiple different conditions, between meds and actively managing anxiety, I am finally able to work fulltime and am considering university again.) I know it’s hard and that it sucks to find out you were wrong. It is still worth doing.”

          I’m glad that you figured out what it is and that medication and managing your anxiety is helping you. I have no problem accepting new diagnoses from qualified professionals when or if they arise, and treating such conditions the best I can. That’s only sensible.

          1. Nashira says:

            @CampOther:

            So, dude, I listed a genericized version of my issues in an attempt to prove my ‘cripple bonafides’. Don’t know why I thought that’d keep you from lecturing me about what being a cripple can do to one’s life plans, but I had hoped. Were they unsatisfactory because I’ve never had Lyme, due to a parentally cultivated tick phobia?

            Wait, don’t answer that. If people smarter and more knowledgable (than me) have brung the science and you’ve shrugged them off with cargo cult science-y screeds, you won’t listen to me.

  6. Camp Other – your first links says “Indeed, patients presenting with joint inflammation post-antibiotic therapy have a higher frequency of HLA-DRB1*0401 (DR4) and related alleles (4–7). Interestingly, theses alleles, which share a sequence in the third hypervariable region of the HLA-DRB1 chain, have also been associated with susceptibility to rheumatoid arthritis (RA) (8). ”

    Actually, there a several other auto-immune conditions that are linked to HLA-DRB1 as well.

    Elevated antineural antibodies how been found in patients with neuropsychiatric lupus and other neurological disorders. (Just google it.)

    Antiphospholipid antibodies are found in SLE/antiphospholipid syndrome.

    None of these appear to be autoantibody tests results distinctive to lyme disease.

    And RA, SLE, APS have evidence based diagnoses and treatments. I can’t really speak for the other neurological disorders.

    1. Camp Other says:

      mousethatroared:

      I’m aware that HLA-DR4 is also found in rheumatic arthritis, too. Researchers have noted that. But there’s also LFA-1 OspA molecular mimicry going on, and that’s specific to Lyme arthritis. (see: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3106239/)

      As for the rest – you’re correct, these antibodies do have a relationship to other conditions as well. I don’t know if the proteomics study is going to find a specific marker or not – that requires more study.

      But lack of a distinctive marker doesn’t mean it may not lead to an autoimmune condition in some patients – it just means it shares the presence of certain antibodies with other autoimmune conditions and pathologies.

    2. vadaisy says:

      @MTR, Very perceptive. This is in large part one of the problems with Lyme disease activism. The studies are not presented in an unbiased fashion. Generally, the findings are presented in such a manner so as to relate them to Lyme disease. Oftentimes, readers simply assume what they are reading is the truth, the whole truth and nothing but the truth… This is not true at all. I’m sure any reader of Science-Based Medicine has learned that you just can’t assume that the findings presented in a study are indeed a full disclosure or in some cases, reliable at all.

  7. Jim C says:

    If only you could imagine what Lyme untreated can do. 14 months to get diagnosed. Peripheral neurapothy, fibromyalgia, cardiomyopathy, sequential bilateral facial paralysis that lasted 5 months, a fatigue that reviles the death bed, brain fog, cognitive issues, and that’s just the highlights. Three years after the month long course of IV rocephin which likely saved my life and I am still battling multiple joint bursitis, fibromyalgia, and fatigue. None of this before I was sick. It’s a horrid disease that can kill or make you with you were dead. And that is still true no matter what hate mongers like the author of this article say. Of course it’s in my area or the western blot and elisa would not have been positive but how do we account for masters, stari, and heartland? They are Lyme and treatment is the same. Insurance companies spew this misinformation like this horrid article. But regardless it’s like aids in the early 80s and the band is playing on. Like I told my wife until there’s a Ryan white face on this nothing will change. I just thank god for strong genes or I’d likely be dead. And there are still times I wonder why god saved me to be miserable but I guess it’s in my head since symptoms should subside in months. Live it and then tell me. Again, shame on you!

    1. WilliamLawrenceUtridge says:

      This article isn’t written by an insurance company.

      Between when AIDS appeared in the early 80s and the current day, not only was AIDS identified (twice), but it has been converted from a death sentence to a life-long treatment issue. This is because it was rather quickly and clearly identified as being caused by HIV, the various steps to identify and treat it were quickly and easily repeated by other scientists. One didn’t have to be an “HIV-Literate MD” to identify a viral particle or viral load.

      Attempting to shame others for pointing out reasonable reasons to doubt paints you as a zealot unwilling to recognize why the area is seen as tremendously flawed.

    2. vadaisy says:

      how do we account for masters, stari, and heartland? They are Lyme and treatment is the same.

      STARI is not the same as Lyme disease, except under the opinion of one vocal Lyme activist/researcher in Florida. That hardly consists as a medical consensus. A prolific PhD flooding the Internet and support groups with such claims will undoubtedly gain followers. Shame should be to them for spreading such misinformation. They should share their evidence with their peers. This is what I have a problem with, as WLU and others have already stated. These “LLMDs” are using their patients to do their bidding for them, rather than science. They should instead be demonstrating their evidence to their peers, who are indeed most qualified to discern their fiction from truth.

      Heartland is a virus commonly referred to as Heartland Virus. Lyme disease is a bacterial infection. The treatments are not the same. The antibiotics used to treat Lyme disease are not effective against the virus which causes Heartland. This is very basic science – virus’ and bacteria are different.

  8. Camp Other says:

    For Jonathan Graham:

    Camp Other said “If only that were always true.”

    Jonathan Graham responded: “If this is any kind of argument, it’s a bad one as it’s an arbitrary standard of evidence. Why not just say “If only people never got sick”, “if only vaccines didn’t have exceptionally rare side effects”.

    It was actually an observation and a lament, perhaps, but not an argument. Not every statement I make anywhere on the internet is presented in the form of an argument.

    Sometimes people are human, and they do indeed wish people never got sick or that vaccines or drugs didn’t have exceptionally rare side effects and express such things.

    Jonathan Graham continued:

    “Some people” “Again with the “some”.“do go on to have chronic Lyme/post Lyme for years, and some people have more debilitating courses of it than others.”
    …and the longer it goes on and the smaller the group (or the larger the asymptomatic group), the more variability. The less likely it has anything to do with Lyme.”

    However, if you like making it an argument… sure, let’s explore it then.

    The CDC states: “Approximately 10-20% of patients with Lyme disease have symptoms that last months to years after treatment with antibiotics.”
    source: http://www.cdc.gov/lyme/signs_symptoms/

    Here’s some research that supports this statement:

    Evaluation of Study Patients with Lyme Disease, 10–20-Year Follow-up
    source: http://jid.oxfordjournals.org/content/183/3/453.long

    Excerpts:

    “Previous studies have reported symptoms consistent with post—Lyme disease syndrome in antibiotic-treated patients, particularly if treatment was delayed after the onset of symptoms. In a population-based study in Ipswich, Massachusetts [41], 38 residents who had a history of Lyme disease had more musculoskeletal symptoms and verbal memory impairment than did 43 people who had not had this illness. The 13 patients with sequelae had a substantially longer duration of disease before receiving antibiotic therapy than did those without sequelae.”

    “Among 186 residents of Nantucket Island who had Lyme disease assessed a mean of 6 years after disease onset [42], 36% had persistent symptoms, consisting predominantly of memory and concentration difficulty, musculoskeletal pain, and fatigue.”

    “In a study of 23 patients with post—Lyme disease syndrome [44], 30% fulfilled criteria for fibromyalgia, 13% met criteria for CFS, and 57% had similar but generally milder symptoms that did not fulfill the formal classification criteria.”

    There are caveats to this follow up study, and the authors explain that those with the worst symptoms had delayed treatment and/or had fewer antibiotics, whereas today more patients would get diagnosed and treated earlier and number of better outcomes would be higher sooner. (Is that statement true, though – this is only one study, and experts state that Lyme disease can be hard to diagnose and some cases may be asymptomatic in early infection, only to become symptomatic after dissemination.)

    The Aucott et al study, on the other hand, had this to state:
    source: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3548099/#CR18

    “Our results may differ from previous studies in important ways. Retrospective, community-based studies may include a higher proportion of patients with neurologic presentations, delayed diagnosis, and exposure to non-standard therapies. All of these known risk factors for PTLDS were limited or non-existent in our cohort. Thus, while reflective of community practice, retrospective studies may overestimate the severity of these symptoms among ideally treated patients. Conversely, our 35% PTLDS rate is somewhat higher than previous studies requiring only EM at study entry [12], or excluding patients with systemic signs or symptoms [27]. We believe that our cohort with evidence of systemic illness is representative of the majority of patients with early Lyme disease as sensitive culture-based studies show 70% of patients are blood culture–positive at the time of early diagnosis [5]. Our focus on impact of symptoms on function demonstrate that symptoms may not be as mild as previously thought with significant health-related quality of life impact and diminished function even in a previously healthy, low-risk population.”

    Summary of results: “At 6 months, 36% of patients reported new-onset fatigue, 20% widespread pain, and 45% neurocognitive difficulties.”

    The Klempner clinical trials (2 trials in one; seropositive and seronegative patients):
    http://www.nejm.org/doi/full/10.1056/NEJM200107123450202#t=articleDiscussion

    Excerpts:

    “The effect of chronic Lyme disease on the health-related quality of life was substantial in both seropositive and seronegative patients. The deficits in physical health status as measured by the SF-36 were equivalent to those observed in patients with congestive heart failure or osteoarthritis and were more than 0.5 SD greater than the impairment observed in patients with type 2 diabetes or a recent myocardial infarction.7,8 Chronic pain was an important contributor to the impairment of physical health and was similar to that reported by patients with osteoarthritis.7,8 The impairment of mental health status was similar to that observed in patients with subthreshold lifetime depression (a depressive disorder that does not meet all of the criteria for major depression of the Diagnostic and Statistical Manual of Mental Disorders, third edition).7,8,26 The study patients also had some impairment in cognitive functioning. Their base-line FIQ scores reflected the impairments in health status that were evident in the SF-36 scores and were similar to those in previous studies of patients with fibromyalgia or those with chronic Lyme disease after treatment…. [...]

    “In summary, patients with chronic musculoskeletal pain, neurocognitive symptoms, or both that persist after antibiotic treatment for well-documented Lyme disease have considerable impairment in their health-related quality of life. ”

    I can provide you with additional sources if you would like, but basically what I get from reading the literature available and not pay walled is that patients’ post-treatment Lyme disease can be mild, moderate, or severe. Symptoms must persist for a minimum of 6 months to qualify as post (treatment) Lyme disease. Patients may have symptoms for only 6 months, some will have them up to a year, and in other studies they’ve had symptoms for years.

    Delayed antibiotic treatment and greater severity of symptoms at disease onset seem to have a relationship with those patients who go on to experience persisting post-treatment symptoms.

    1. Camp Other said:”Sometimes people are human, and they do indeed wish people never got sick or that vaccines or drugs didn’t have exceptionally rare side effects and express such things.”

      I wish people didn’t get sick but I don’t insert it after someone points out that I’ve made a poor argument and I don’t make passive-aggressive jabs at their humanity. It’s manipulative.

      Camp Other then drastically misunderstood the argument by saying: “However, if you like making it an argument… sure, let’s explore it then.”

      Camp Other then vomited a bunch of stuff that I started reading and then got bored but he concluded with the needless: “I can provide you with additional sources”

      Instead how about you provide a clear, mercifully concise and testable thesis, that directly opposes the one I made and then provide evidence for that? If you can’t be clear – then we have little to discuss. If your thesis doesn’t directly oppose what I stated then we don’t necessarily disagree. When you support a statement use a cite or a linked cite and quote the smallest relevant portion when you are pulling a small facet of a study and no quote if you are referencing the outcomes of a study. If you are summarizing, then summarize and cite afterward. Again short, concise sentences are appreciated.

  9. Brian says:

    Still waiting on my “What “is” OspA ‘s structure?” question. Anyone? Buehler? Buehler? Buehler? Interesting that Linden Hu of Tufts just got an NIAID grant (listed on Project Reporter) to understand WHY OspA is an immune suppressant through the TLR2 pathway. Not IF, but WHY. Since this is true, OspA could never have been a vaccine in the first place. BTW, The Koreans and the Japanese mass specced it and found it to be Pam3Cys. So, Pam3Cys = OspA in structure. It works the same way that gp120 in HIV patients does. Creates immunosuppression. So if Borrelia (Relapsing Fever) emit OspA through autoblebbing or continuous vaccination, would that not make it a continual immune suppressant? Pam3Cys/OspA is a fungal lippopeptide that inhibits apoptosis and reactivates latent Herpes viruses, especially EBV, and EBV is implicated in numerous autoimmune illnesses. Further, If OspA inhibits the autokill kinase, would that not lead to cancers of the lymphoma/leukemia nature?

  10. Brian says:

    So, when individuals have an unspecified illness that are not HLA linked and their symptoms are systemic, are we to believe it is all in their heads? Most docs are taught in Med school to look for antibodies first and look for causative agents second. So what happens when your immune system is so overwhelmed by chronic infections of Mycoplasmas, Borrelia, Chlamydia, reactivated viruses and fungal infections produced by TLR2 agonists and cannot muster an appropriate , vigorous response?
    Are these people to be kicked to the curb? No, they need to be tested for actual infections, especially if they show signs of NON-HIV immunosuppression, like high Herpes family virus titres (EBV, HHV6, HSV1, etc), NK and T cell response, or lack thereof.

    Let’s take Bartonella for instance. The CDC had recognized 3 types of Bartonella species, Cat Scratch Fever being the most prevalent. The CDC states that Bartonella Hensalae is easily suppressed/eliminated with little to no bacteremia. Well, that’s being proven to be a farce by Infectious Disease Zooinologist Dr Ed Breitschwerdt at NCSU where he has found over 26 different species and sub species. All of these have been confirmed by several research institutions. Supposedly Bartonella is quickly removed by immune system and the bacteria cannot be found in the blood by PCR, as per the CDC. In reality, an enriched insect blood medium had to be used in order to do a modified BAPG. When that was used instead of the standard PCR, it was found to detect many more species. Interesting as well, the bacteria will move freely into and out of the blood, depending on conditions. Bartonella has MANY overlapping Lyme (Relapsing Fever) symptoms and is being found as a co-infection or a stand alone infection. How many doctors are going to run a test like this when there is a patient complaining of headaches, CNS issues, stabbing pains, neuroplathy, light sensitivity, OCD, ankle and foot pain/burning, IBS, lower back pain.

    You speak like these people are crazy, and yet they are not. Maybe if you were taught more about INTRACELLULAR infections and the symptomology thereof, you might actually find that these people ARE sick with a synergistic infection of bacterial/viral and fungal in nature. And since Bartonella is a TLR2 agonist, it does the exact same thing as OspA/Pam3Cys/gp120, completely disable an immune system.

    1. Melissa Bell (FLDA) says:

      Great post Brian. This is precisely what we are facing with our son. Whereas he started with only a few positive bands on a Lyme Western Blot (including a species specific band), after a couple months of treatment, his Western Blot retest showed many more bands (including several more species specific bands). It is clear that his immune system was suppressed by the numerous infections (LD, Bartonella, Mycoplasma, Chlamydia Pneumonia, a parasitic protozoan and HHV6 all confirmed with labs). We have found that Bartonella has been the most difficult to treat of his infections. Just because the CDC makes a claim on its website does not make it true. This is a rapidly evolving area of medicine. Hopefully, with the vastly higher estimate of cases (300,000, not 30,000), Lyme Disease and other tick-borne infections will finally receive the funding, research and attention that is long over due.

    2. weing says:

      “So what happens when your immune system is so overwhelmed by chronic infections of Mycoplasmas, Borrelia, Chlamydia, reactivated viruses and fungal infections produced by TLR2 agonists and cannot muster an appropriate , vigorous response?”

      I think you die when that happens.

  11. Brian – “So, when individuals have an unspecified illness that are not HLA linked and their symptoms are systemic, are we to believe it is all in their heads?”

    No, I certainly didn’t say that. Personally I have an unspecified illness that is not linked to HLA and my symptoms are systemic. I certainly don’t believe that it’s all in my head, nor have my doctor suggested that.

    Look, if you are not following the comment thread, and want to comment that is fine, but don’t butt in with accusations based on lazy reading. It’s doesn’t add anything to the conversion and doesn’t prove anything.

  12. WilliamLawrenceUtridge says:

    So, when individuals have an unspecified illness that are not HLA linked and their symptoms are systemic, are we to believe it is all in their heads?

    When individuals have an unspecified illness that are not HLA linked and their symptoms are systemic, are we to believe it is and must be CLD?

    So what happens when your immune system is so overwhelmed by chronic infections of Mycoplasmas, Borrelia, Chlamydia, reactivated viruses and fungal infections produced by TLR2 agonists and cannot muster an appropriate , vigorous response?

    I’m also going to have to go with “you die”, but will also note that one would presumably be able to find evidence of this that is well-accepted within the medical community.

    Are these people to be kicked to the curb?.

    Sure, that’s valid, but what they don’t need is to be told they have an infection that is impossible to objectively verify, that is only treatable through a dangerous intervention, and that they have to pay through the nose for the privilege. I believe there is a psychogenic component to at least some people with CLD, though I do not believe it is all (I don’t have any idea for a fixed proportion actually). I think telling them all that it is definitely caused by a specific agent is misleading, and poses a threat to their health. One of the CLD papers I read stated that the best way to manage this is to admit that the cause is unknown, to monitor with compassion, and to not deceive. At best, LLMDs seem to do only the second thing.

    No, they need to be tested for actual infections, especially if they show signs of NON-HIV immunosuppression, like high Herpes family virus titres (EBV, HHV6, HSV1, etc), NK and T cell response, or lack thereof.

    And what sorts of results are to be had when these tests are conducted by non “Lyme” labs?

    Let’s take Bartonella for instance [snip] All of these have been confirmed by several research institutions.

    And that’s really the rub, isn’t it? If the results of LLMDs are so convincing and powerful, why aren’t infectious disease doctors convinced? Appeals to conspiracy, greed, Big Pharma (a ridiculous assertion, since Big Pharma makes and sells the expensive drugs used to treat CLD), cruelty, madness or whatever else, are handwaves, distractions from the fact that the evidence is unconvincing to experts. Experts do change their mind, in the face of good data. My quite reasonable assumption is, proponents of CLD have a lot of speculation, a lot of mud to sling, but very little good data.

    You can’t use Bartonella as an example – a researcher investigated, found a phenomena that was replicable by other researchers, published, and the opinions of the research community change. Doctors and the medical community do not resist new ideas as a whole; that’s why consensus statements and Cochrane reviews are updated with new evidence. What doctors do resist is hectoring from nonexperts who selectively cite the literature, publish shoddy work, wave about hypotheticals like they were truths form on high, never change their mind, try to force the science through politics, and also threaten the occasional life.

    How many doctors are going to run a test like this when there is a patient complaining of headaches, CNS issues, stabbing pains, neuroplathy, light sensitivity, OCD, ankle and foot pain/burning, IBS, lower back pain.

    All of them, when the science is adequate to support this as a best practice and there is general consensus that this is the appropriate approach to take. You pretend doctors don’t change their mind out of some sort of personal pique, ignoring the poor evidence base.

    You speak like these people are crazy, and yet they are not.

    Actually, it is you who do that. It is you who pathologizes any attempt to infer or consider a psychological cause. It is you who are treating psychogenic illnesses as if they were something to be ashamed of, something that isn’t real, something that doesn’t cause true suffering. Medical history is filled with diseases experienced by people in genuine anguish and pain, and they need help. What they don’t appear to need, are six months of antibiotics delivered through a central line that is prone to infection. Psychological symptoms and pain are real, are worthy of respect, and should be taken seriously. They should not be treated as the bastard red-headed stepchild of “real” illness.

    Maybe if you were taught more about INTRACELLULAR infections and the symptomology thereof, you might actually find that these people ARE sick with a synergistic infection of bacterial/viral and fungal in nature. And since Bartonella is a TLR2 agonist, it does the exact same thing as OspA/Pam3Cys/gp120, completely disable an immune system.

    Kaposi’s sarcoma is a herpes-caused cancer that appears essentially only when people actually have a completely non-functional immune system – most commonly due to HIV infection. How often do you see Kaposi’s sarcoma in CLD patients? A completely disabled immune system is pretty much the definition of AIDS; how closely do CLD patients approximate AIDS patients? How many die of AIDS-defining illnesses? How many die of Candida? Or any bacterial or viral infection that a normal, healthy person would clear with little effort or even symptoms? What is the average life expectancy of a CLD patient? Because for untreated HIV infection, it’s between 10 and 15 years, give or take.

    These grand claims of certainty, unmatched by anything even close extraordinary (or even merely convincing) evidence, are one of the things that makes your arguments unconvincing to me. The certainty with which you hold your convictions suggests that you are indifferent to any evidence or counter-argument that might divert you from your conviction.

    These symptoms you claim are caused by chronic Lyme disease (or whatever synonym you might want to use) might be completely unrelated to Lyme disease. Until you consider that as an option, no scientific body will take you seriously.

    1. Nashira says:

      @WLU said:

      “Psychological symptoms and pain are real, are worthy of respect, and should be taken seriously. They should not be treated as the bastard red-headed stepchild of “real” illness.”

      Thank you. I wish I could repeatedly upvote this comment.

  13. Camp Other “But lack of a distinctive marker doesn’t mean it may not lead to an autoimmune condition in some patients – it just means it shares the presence of certain antibodies with other autoimmune conditions and pathologies.”

    On the contrary the lack of a distinctive autoantibody coupled with the fact that it shares several different autoantibody with other autoimmune diseases looks like evidence that lyme disease can trigger a flare or onset of several different autoimmune diseases…(like many other bacterial or viral infections and other triggers such as hormone fluctuations, stress, fatigue, sunlight). Which is what I said up thread. The people with autoantibodies should be treated for the appropriate autoimmune conditions with the evidence based and effective therapies available..not with disproven dangerous therapies like long term antibiotics. Which I said up thread.

    Beyond that, the knowledge that lyme can be one of many environmental triggers to autoimmune disease doesn’t really help us much right now beyond confirming the precautions to avoid ticks and see a doctor quickly if you have symptoms/exposure concerns.

    But this is only a subset of Chronic Lyme patients. It appears there are a lot of subsets. Some subsets don’t even have concrete evidence of a Lyme disease infection. This category, Chronic Lyme Disease has so many subsets, with such diverse symptoms, tests and proposed mechanism that it undermines, rather than advances evidence based methods of getting individual patients the best care possible.

    That’s the whole point…not that an individual patients symptoms are all in their head, there can be a host of different things happening with individual patients with such diverse symptoms, tests, health history. The point is that the label of Chronic Lyme Disease is a label that is not diagnostically usefulness.

    1. Camp Other says:

      mousethatroared said:

      “On the contrary the lack of a distinctive autoantibody coupled with the fact that it shares several different autoantibody with other autoimmune diseases looks like evidence that lyme disease can trigger a flare or onset of several different autoimmune diseases…”

      Yes, it shares different autoantibodies with other autoimmune diseases so it could trigger the onset of different autoimmune diseases we already know about. But couldn’t there be a new autoimmune disease which arises from having had Lyme disease that happens to share these kinds of autoantibodies?

      “Beyond that, the knowledge that lyme can be one of many environmental triggers to autoimmune disease doesn’t really help us much right now beyond confirming the precautions to avoid ticks and see a doctor quickly if you have symptoms/exposure concerns.”

      Unfortunately, you are correct. But a new Lyme disease vaccine is in clinical trials in Germany now, and if it’s successful, it may make its way to the US and help prevent Lyme disease in people.

      It doesn’t do anything to help someone like me who went on to have persisting symptoms – but it works, it makes me happy to know it could prevent others from my fate.

      “But this is only a subset of Chronic Lyme patients. It appears there are a lot of subsets. Some subsets don’t even have concrete evidence of a Lyme disease infection. This category, Chronic Lyme Disease has so many subsets, with such diverse symptoms, tests and proposed mechanism that it undermines, rather than advances evidence based methods of getting individual patients the best care possible.”

      That’s a problem, and I don’t like what’s happening with all the Lyme disease labels. Those patients who genuinely have a history of having the infection go on to get lumped in with those who don’t and may never have had Lyme disease. This becomes marginalizing, as it has online in a number of venues because those with a genuine case of infection-based chronic Lyme/post treatment Lyme are included in those accused of having a “fake disease”.

      Concurrently, lack of a solid case definition for these groups makes discussing the science difficult as well.

      “That’s the whole point…not that an individual patients symptoms are all in their head, there can be a host of different things happening with individual patients with such diverse symptoms, tests, health history.”

      Agreed.

      A lot of what I’ve been trying to explain here is that one has to be careful when talking to someone who says they have “chronic Lyme disease”, in regards to doubting the diagnosis without having the evidence to support their condition. Because there is the chance that someone does have a history of infection with Lyme disease who goes on to develop persisting symptoms, and unfortunately they get labeled with having a condition that is “all in their head” or “a fake disease”.

      I’m not sure what standard of proof would be acceptable online for those being doubtful, anyway. Even if one were to be less protective of one’s medical privacy and share their medical records online, it could end up like Obama’s birthers, i.e. “That’s a fake ELISA” instead of “That’s a fake birth certificate”.

      Regardless of what conditions people have – even if they have no history of Lyme disease – it isn’t right to tell people “it’s all in your head” or “you have a fake disease”. That’s dismissive of someone who may have a genuine medical problem.

      In society, either one takes someone at their word – especially a friend – when they say they have a medical problem – or they don’t. But I’ve noticed a tendency for some fellow humans to doubt other people a lot more online than if they were sitting in front of them. Why the difference, I don’t know… but it’s not as if I’ve witnessed someone asking another person for evidence supporting their illness over a coffee in person.

      1. weing says:

        regarding Lyme tests. I have occasionally found patients with equivocal tests to be positive for syphilis and vice versa.

        1. Camp Other says:

          weing said,

          “regarding Lyme tests. I have occasionally found patients with equivocal tests to be positive for syphilis and vice versa.”

          This is why doctors say it’s important to look at an individual patient’s clinical history and all the evidence to determine a diagnosis. Symptoms, plus index of suspicion, plus test results.

          If someone has syphilis, you treat them with antibiotics also, and tell them to take better protective/preventive measures in the future – just as with Lyme disease. Except in one case, a condom does the job and in the other, permethrin, DEET, covering up with pants and long-sleeves.

          People can get false positive Lyme disease tests – which is why it’s important to rule out other possibilities for conditions with cross-reactive antibodies. But if the patient in front of you already has an expanding EM rash and evidence of a tick bite, you don’t even need to test – you treat.

          1. weing says:

            “But if the patient in front of you already has an expanding EM rash and evidence of a tick bite, you don’t even need to test – you treat.”

            That’s pretty much the standard here in Connecticut. We treat if we have the rash, even without evidence of a tick bite.

          2. whencarsfly says:

            Unfortunately, that is NOT the standard in the South or in most other “non-endemic” parts of the country.

            The standard is to say that “we do not have Lyme Disease in so it must be in your head”.

          3. WilliamLawrenceUtridge says:

            Which makes sense in cases of unproven ongong infection, unverified history of infection, and subjective, vague symptoms unrelated to actual Lyme infection.

  14. WLU – I love you comment, I agree 99.9%. I’m going to be a pain though and point out my 1% contention – I’m sorry, it’s like pointing out a speck of lint on a Goya painting, but.

    Brian “How many doctors are going to run a test like this when there is a patient complaining of headaches, CNS issues, stabbing pains, neuroplathy, light sensitivity, OCD, ankle and foot pain/burning, IBS, lower back pain.”

    You “All of them, when the science is adequate to support this as a best practice and there is general consensus that this is the appropriate approach to take. ”

    No, not ALL of them. The reality is that some percentage of doctors are quacks or incompetent and can even manage to miss or dismiss obvious signs of infection. Even good doctors miss things, make mistakes or overlook or just didn’t happen to get to the most up to date article on that topic. There can be problems or miscommunications with test results that might cause confusion, etc. Some doctors will have another pet theory of “the cause of all symptoms” and will focus on hypothyroid or adrenal fatigue or some such.

    It would be nice if ALL doctors did the appropriate evidenced/science based tests with an acceptable risk/benefit profile, though. That’s why I support SBM.

    But since they don’t, it is good for patients to try to maintain some skepticism on the recommendations of their doctors and follow up or seek a second opinion if they feel they’re not getting anywhere. Questioning without being adversarial, I guess.

  15. WilliamLawrenceUtridge says:

    @MTR

    WLU – I love you comment, I agree 99.9%. I’m going to be a pain though and point out my 1% contention – I’m sorry, it’s like pointing out a speck of lint on a Goya painting, but.

    How am I supposed to learn if I am never challenged? Please don’t ever hold back.

    No, not ALL of them. The reality is that some percentage of doctors are quacks or incompetent and can even manage to miss or dismiss obvious signs of infection. Even good doctors miss things, make mistakes or overlook or just didn’t happen to get to the most up to date article on that topic. There can be problems or miscommunications with test results that might cause confusion, etc. Some doctors will have another pet theory of “the cause of all symptoms” and will focus on hypothyroid or adrenal fatigue or some such.

    Agreed, even the clearest consensus documents are aspirational and not everybody will follow them (coughJayGordoncough). That’s why we have things like medical review boards, morbidity and mortality presentations as part of medical training, continuing medical education credit requirements, best practice guidelines and the like. Medicine, like science, like every human endeavor, will never be perfect but it can at least aspire to be clearer and better than what existed in the past.

    I would even argue that one could still be a perfectly competent, non-quack doctor and still make mistakes, miss diagnoses and fail to follow the best and most recent clinical guidelines (for instance, many doctors would be following some clinical guidelines if they recommended acupuncture for joint pain, arthritis or other dysfunction).

    It would be nice if ALL doctors did the appropriate evidenced/science based tests with an acceptable risk/benefit profile, though. That’s why I support SBM. But since they don’t, it is good for patients to try to maintain some skepticism on the recommendations of their doctors and follow up or seek a second opinion if they feel they’re not getting anywhere. Questioning without being adversarial, I guess

    Sooooo hard to do though! As I said to Dr. Jay on the other thread – I rely on doctors as gatekeepers and interpreters (which is why his abdication of this role is so incredibly angering). After years of reading and discussion, I have reached the point where I am reluctant to challenge doctors simply because I have realized how ignorant I am. The amount of time it takes for me to understand even a review article is quite astonishing, and that doesn’t even approach the knowledge necessary to understand the individual primary studies – or the basic biochemistry I completely lack.

    Being a good doctor is hard, it’s irritating to see LLMDs and Dr. Jay taking the easy way out and telling patients whatever they want to hear. I do think that doctors should get specific training on MUSs; one of my friends had such a condition and his doctor managed to handle it well – ongoing testing, reassurance, and offering some cognitive tools to try to manage in the meantime. But I get the feeling this approach was ad hoc, not part of routine training. Pity.

    1. WLU “Sooooo hard to do though!”

      To true! I’d like to find an easier way…One thing that’s helpful: Finding a0 PCP that seems to be a good fit communication wise, appears to practice within their specialty’s standard of care, gives you a good outline of the differential diagnoses they are considering/the reasoning behind their recommendations* and has a well organized records process, staff and follow-up. Also a doctor who will stand up to you when you are mistaken is valuable.

      Our pediatrician is like that and it makes medical care for the kids a lot easier.

      It’s a lot harder to trust a doctor’s correction if they have mixed up your file with another patient’s, sent in a prescription with the incorrect dosage, rolled their eyes at the nurse when you their questions about your symptoms, told you that they don’t have time to look at all your test results before giving you a diagnoses, etc.

  16. Camp Other says:

    Nashira said:

    “So, dude, I listed a genericized version of my issues in an attempt to prove my ‘cripple bonafides’. Don’t know why I thought that’d keep you from lecturing me about what being a cripple can do to one’s life plans, but I had hoped. Were they unsatisfactory because I’ve never had Lyme, due to a parentally cultivated tick phobia?”

    I was responding to MY part of the “our” in your statement:

    “I know it is hard to deal with or accept the knowledge that maybe one will be disabled or sick for years. I know it seems to make OUR suffering more valid when there is a single diagnosis that “fits” OUR widely varying symptoms and impairments.”

    “Our” can mean you and me, or it can mean everyone else as well. I responded to you personally about how disability has affected me, but also had other people in mind while I was responding.

    Either you are affected the same way or you are not – but given I don’t know your life situation or circumstances, I can’t know how profoundly you’ve been affected by disability and illness over time.

    Not having had Lyme doesn’t mean that someone – including you – with another condition is any more or any less disabled. Someone with MS, congestive heart failure, fibromyalgia, osteoarthritis, or another condition can also be just as disabled as or more disabled than someone with chronic Lyme/post Lyme.

    Not intending to, I can see where I might have hurt your feelings with what I said further down, though:

    Nashira said:

    “I have had a particularly nasty form of neuropathy *and* chronic migraines *and* a panic disorder, for the last ten years. (Tho praise Buddhathulu, after finding out it’s multiple different conditions, between meds and actively managing anxiety, I am finally able to work fulltime and am considering university again.)”

    Camp Other replied to Nashira with:

    “I’m glad that you figured out what it is and that medication and managing your anxiety is helping you.”

    I was happy you figured out what was wrong and acknowledged your success in managing your conditions, but I did not take a moment to acknowledge the years of suffering.

    I am sorry, and apologize. It does sound like you have had a really tough time and a lot of pain over the last ten years.

    I hope someday I return to work full time and do the kind of things you are doing – that is really great.

    Nashira, that your last statement looked like one that someone might be able to interpret in two different ways, as you seemed to take my statement about disability and loss as applying to you only: “I know it’s hard and that it sucks to find out you were wrong. It is still worth doing.”

    I could have decided that when you stated “you” there, you meant “you” specific as in me rather than “you” plural-general, but let it slide because I decided you weren’t lecturing me about my having my diagnosis wrong and were making a statement about people in general.

    “Wait, don’t answer that. If people smarter and more knowledgable (than me) have brung the science and you’ve shrugged them off with cargo cult science-y screeds, you won’t listen to me.”

    Explain where I’ve done that. I don’t support cargo cult science, and in fact would like to see a number of things happen I have not regarding chronic Lyme/post Lyme, such as have LLMDs conduct clinical trials and have someone replicate the studies of those who make claims about the purpose of spheroplasts/round bodies in Lyme disease pathogenesis.

    1. Nashira says:

      @CampOther: I did, in fact, mean you in specific with regards to being wrong. You search for reasons to justify “CLD” as an entity, and have for years judging by your blog. You dismiss evidence that does not suit your predetermined conclusion, and try to drown it out with article names where even I can tell you don’t understand near so well as you think you do. That’s pretty bad, when all I’ve got is an associates in art history, with astronomy for my lab science.

      In addition, I do not think it is genuinely supportive to blindly accept it when someone claims to have a discredited diagnosis. Not when that keeps them from receiving appropriate diagnosis and care. Call me mean if you want, but I won’t lie like that. It’s wrong.

      1. Camp Other says:

        Nashira:

        “You search for reasons to justify “CLD” as an entity, and have for years judging by your blog.”

        I have written elsewhere on this thread that I began supporting one model only and over time my position has evolved. I think it’s important to look at evidence for different models of persisting symptoms in patients with chronic Lyme/post Lyme, which includes autoimmunity, immune dysregulation, and infection as well as a metabolic model and also differential diagnoses which may match those with chronic Lyme/post Lyme symptoms.

        “You dismiss evidence that does not suit your predetermined conclusion, and try to drown it out with article names where even I can tell you don’t understand near so well as you think you do. That’s pretty bad, when all I’ve got is an associates in art history, with astronomy for my lab science.”

        I’ve already stated in my “About” section of my blog that I welcome corrections on material I’ve written, though I mainly direct that towards microbiologists, immunologists, and molecular biologists. Feel free to email me though, and tell me specifics. Thank you.

        “n addition, I do not think it is genuinely supportive to blindly accept it when someone claims to have a discredited diagnosis.”

        The problem is, one can never be 100% certain online if someone else has a discredited diagnosis of Lyme disease that led to persisting symptoms or a genuine one – can they?

        “Not when that keeps them from receiving appropriate diagnosis and care. Call me mean if you want, but I won’t lie like that. It’s wrong.”

        It’s fine to question someone’s diagnosis, but past a certain point it’s unclear to me when you consider acceptable evidence that someone’s diagnosis is genuine rather than assume it is not. What standard of evidence of someone having chronic Lyme/post treatment Lyme would be acceptable for you to accept their diagnosis with it?

        1. vadaisy says:

          I’ve already stated in my “About” section of my blog that I welcome corrections on material I’ve written, though I mainly direct that towards microbiologists, immunologists, and molecular biologists.

          Dammit! I shouldn’t be drinking coffee while reading these comments. I just laughed so hard I spit all over my keyboard. What a mess. :-(

          @Nashira, It seems you may not be qualified enough to discuss these matters with Camp Other. You can disagree, but she won’t place as much evidence on your opinion as she would if you were an expert. Do I detect a bit of irony in that?

          1. “You can disagree, but she won’t place as much evidence on your opinion as she would if you were an expert.”

            Which may be rational but who weighs Camp Other’s non-expert opinions against other non-expert opinions. Oh yeah…Camp Other.

            Easy to see how the pretense of openess becomes a one-way street.

          2. Nashira says:

            Vadaisy, I… I think I might be heartbroken. Sniff. Oh wait, no, my irony meter shards were poking my boobs. Common mistake. Damn things don’t last long when confronted by a cargo cultist in the throes of passionate arrogancy of ignorance, who only finds trained experts worthy of discourse. So long as said experts arrive at the same predetermined conclusion.

            Is now a good time to point out that, despite my lack of science literacy (which I’m successfully improving, yay!), I found it pretty easy to understand the bones of the arguments of everyone except CampOther? It took two or three reads a couple times, but it was accessible. The pages of wharrgarbl, not so much.

  17. Also WLU “The amount of time it takes for me to understand even a review article is quite astonishing, and that doesn’t even approach the knowledge necessary to understand the individual primary studies – or the basic biochemistry I completely lack.”

    Personally, I generally don’t try to make decisions based on my understanding of studies and articles. I read them sometimes, because it’s interesting, and sometimes helps me grasp concepts, but I have no idea how good the evidence is.

    I try to find the specialty’s standard of care or guidelines that seems to match what’s going on, a proposed diagnoses, etc. If the doctor seems reasonably close to that, it’s good marks from me.

    Often following the herd is the best way to avoid being eaten by a wolf. ;)

  18. Whencarsfly says:

    @mtr said: “Often following the herd is the best way to avoid being eaten by a wolf”

    Wolves separate the weakest from the herd because they are the easiest prey. Depending on the prey, that could prove fatal for the wolf when the herd moves to protect the weakest.

  19. OspA/Brian says:

    LYME disease is NOT just Borrelia B, it is the combination of numerous co-infections. I see you ignored my info on OspA/Pam3Cys. Therein lies the “trigger” for the autoblebbing of OspA from either Vaccination from Lymerix or from Borrelia B infection. TLR2 agonist these nasty little fungal lippopeptides. Go look up Mycoplasmas, Mycotoxins, Malaria, Bartonella, StaphA, Strep, Babesia…….they are all TLR2 agonists. As far as Bartonella and it’s subspecies, even the CDC states Bartonella is a Heart killer and since it infects the endothelial, epithelial cells and Macrophages you have a serious problem. Glomerulonephritis is kinda nice as it necrotizes your kidneys. BTW, why don’t you access the Borden Institute of US Army Pathology and look at the biowarefare texts on q fever, Tularemia, Glanders, etc. Interesting that Q Fever and Bartonella are identical serologically. A Lyme co-infected patient who was treated for a WB pos with 4 weeks ABX aint gonna kill Coxellii Burnetti when infection w/ one microbe equals at minimum 4 yrs ABX Macrolides.

    Your above comments about lack of a vigorous response is funny as the CDC is pushing a nasal spray OspA against the next pandemic flu. Since OspA SUPPRESSES the immune response, woulkd you not die? Not really…you will not die from the “toxic shock” that the 1918 Spanish Flu sufferers did like drowning in your own immune response. But you will die from unsupressed infections over time, much like AIDS sufferers, Leukemia, Lymphoma and B cell cancers. BTW……AIDS and Bartonella go hand in hand as per the CDC (opportunistic infection supposedly) In NON-HIV people, it’s bactereemic at very low levels and immunosuppressive

    1. weing says:

      “LYME disease is NOT just Borrelia B, it is the combination of numerous co-infections.”

      Where in the world did you come up with that?

      1. vadaisy says:

        “LYME disease is NOT just Borrelia B, it is the combination of numerous co-infections.”

        This is the opinion asserted by many “LLMDs” and their patients. Most “LLMDs” now refer to the complex as “chronic Lyme disease” but some are attempting to rename the condition as in the case of this critiqued Huffington Post article.

        Excerpt from Dr. Hall’s article,

        Cohen interviewed Dr. Richard Horowitz, who claims to have treated more than 12,000(!) patients for chronic Lyme disease and has dubbed it “Lyme-MSIDS” for multiple systemic infectious disease syndrome. He claims that most of his patients have a whole host of associated tick-borne illnesses such as Borrelia hermsii (relapsing fever), Babesia, Bartonella, Mycoplasma, Chlamydia, Rocky Mountain spotted fever, Q-fever, Ehrlichia or Anaplasma. He says that MSIDS

        …involves not only the bacterial and parasitic infections mentioned above, but also…

        1. whencarsfly says:

          Ok, and that is your opinion…what’s your point?

        2. weing says:

          I guess we can forget the principle of parsimony. I just watched some news reports about Lyme prevalence and they presented a woman with the so-called “chronic Lyme” as an example of Lyme disease.

      2. OspA/Brian says:

        One of the world’s top cellular pathologists, Nobel nominee, 3 World Renown Citation Papers, 700 peer reviewed and accepted papers, MD Anderson Cancer Research Facility (Burton chair position head). 500 pages long curriculum vitale.

        1. weing says:

          Then you must have misunderstood him or he went the way of Pauling.

          1. OspA/Brian says:

            No, I did not misunderstand him at all.

          2. WilliamLawrenceUtridge says:

            That leaves Pauling then.

        2. WilliamLawrenceUtridge says:

          What sort of research have they published on Lyme disease (and specifically, chronic Lyme disease the disputed illness, not the recognized post-Lyme syndrome with a poorly understood etiology but a specific and limited set of symptoms)? Was this research convincing to the infectious disease or immune system expert community/ies? Why not?

          And if you say “they’re big meanies/Big Pharma/bias/prejudice”, you’re basically admitting you don’t have a reason, merely unfounded accusations.

  20. Camp Other says:

    Jonathan Graham said way upstream:

    CO: “Some people” JG:”Again with the “some”.
    CO: “do go on to have chronic Lyme/post Lyme for years, and some people have more debilitating courses of it than others.”
    JG:…and the longer it goes on and the smaller the group (or the larger the asymptomatic group), the more variability. The less likely it has anything to do with Lyme.

    And I responded to these statements by providing more than one peer reviewed paper with different studies and a double blind random controlled clinical trial with chronic Lyme/post Lyme patients in them and the response I received was basically “Camp Other then vomited a bunch of stuff that I started reading and then got bored but he concluded with the needless: “I can provide you with additional sources”” and “Instead how about you provide a clear, mercifully concise and testable thesis, that directly opposes the one I made and then provide evidence for that? If you can’t be clear – then we have little to discuss.”

    If Jonathan Graham’s statements above were intended to argue about whether or not “some” people go on to get chronic Lyme/post Lyme for years, and he doubted that, then I was going to provide some peer-reviewed sources which responded to that doubt.

    If his complaint was the main argument I’d missed was that the longer it goes on and the smaller the group, the more variability and less likely it has to do with Lyme disease – I didn’t miss it, I agree that many people get better with time. And the same peer-reviewed sources supported this statement, because as time goes by people do tend to get better. But that doesn’t mean that some people aren’t still suffering from persisting symptoms at the 6 year mark or more.

    Nashira said:

    “You dismiss evidence that does not suit your predetermined conclusion, and try to drown it out with article names where even I can tell you don’t understand near so well as you think you do.”

    If you think there’s something that needs correcting, again – email me and use citations to support your position. Otherwise, there’s nothing constructive to be gained from pointing this out.

    In general:

    If you are going to engage in ad hominem attacks and not focus on the substance of the points I am making or the material I’ve written then I’m wasting my time here.

    1. “and the response I received was basically “Camp Other then vomited a bunch of stuff that I started reading and then got bored but he concluded with the needless: “I can provide you with additional sources”” and “Instead how about you provide a clear, mercifully concise and testable thesis, that directly opposes the one I made and then provide evidence for that? If you can’t be clear – then we have little to discuss.”

      Without a clear, testable thesis, how is it anything but vomit? Is “some people” for “years” a clear, concise and testable thesis?

      Do we specify how many years? How many is some? Any quantity greater than one? What probability do we assign to our correlation if it’s only one? or two? Does having two cases mean there is twice the odds of one “real” case? What if it’s fifty? What then? Using “some” in a context where you need to have a clear testable hypothesis is silly. There is no statistical tool for detecting “some”. You should add to your list of experts you would like to hear from on your blog “statistician” because you really don’t seem to understand.

      “If his complaint was the main argument I’d missed was that the longer it goes on and the smaller the group, the more variability and less likely it has to do with Lyme disease – I didn’t miss it”

      Your response was irrelevant to my statement. Forgive me if I incorrectly interpreted that as you not having a clue.

      “But that doesn’t mean that some people aren’t still suffering from persisting symptoms at the 6 year mark or more.”

      Doesn’t mean that they are and the longer you go and the smaller your group and the more variability in symptoms. The less likely you are observing the same thing. One of the reason why we don’t talk about cancer cures, instead we talk about recidivism at the five and ten year mark. Can you get cancer after ten years. Sure but by that time you’ve probably been exposed to so many things that it would be hard to determine if this is the same cancer or a new one.

      Speaking of > 6 years. Did you even read the first study you posted? What would you say are the clear problems with it…because, you’re so self-critical and all that.

      “If you are going to engage in ad hominem attacks”

      If you are going to use the term “ad hominem” please look it up. I’m not attacking your person to undermine your argument.

      “not focus on the substance of the points I am making”

      Make a usefully clear point and I’ll quickly and efficiently show you where you are wrong or ignore it because you’re right. Continue to make ridiculously vague assertions (or claim that ridiculously vague assertions are supported by rigorous science) then I’ll keep pointing out that you’re being vague and deceptive. It’s not like I’m the only one here saying this either.

  21. Nashira “Is now a good time to point out that, despite my lack of science literacy (which I’m successfully improving, yay!), I found it pretty easy to understand the bones of the arguments of everyone except CampOther? It took two or three reads a couple times, but it was accessible. The pages of wharrgarbl, not so much.”

    Good to see another commenter with an arts background! Many of the bloggers here are excellent at explaining very technical topics in ways that are reasonably understandable to someone without a science background (like me – BFA with HS science and biology 101) hope you stick around.

    1. whencarsfly says:

      *high fives* for everyone here with an arts background…unless you agree with CampOther.

      1. I wasn’t actually aware that anyone else here had an arts background. It didn’t occur to me to comb through 446* comments on the remote chance that someone else had mentioned it and would feel left out.

        *Wow Harriet Hall that’s a lot of comments

      2. You must be a joy at parties.

        1. vadaisy says:

          You must be a joy at parties.

          Only at parties where anyone objects to the pseudo-diagnoses sold by “LLMDs”.

          1. mousethatroared says:

            @vadaisy – ummm – possibly, I should be generous and believe that.

  22. Onetruth says:

    Many conditions are treated with long term abx even when there are no tests to show the infection has cleared. Two years is just standard based on nothing. They don’t know OspA, they don’t know science, they don’t know shit.

  23. OspA/Brian says:

    The US Gov’t supplied tons of “DUAL USE” materiel to the Iraqis in their war against Iran. Bacterias/viruses/Rickettsial, fungal agents for use in their biowarfare program. These came from American Type Culture in Rockville Md. You can see a copy of the actual document when you look for S.HRG 103-900 May 25, 1994 ISBN 0-16-047069-2.

    “Lyme Disease” is plain ole African Swine Relapsing Fever that has morphed or possibly modified to include numerous co-infections including but not limited to Babesia WA-1, Bartonella, HGE, Powassan virus and Anaplasmosis. We know that because all bacterias/viruses/fungi/rickettsia have a genetic “fingerprint” The West Nile virus that is being found by LLMD’s strain matches a strain that was given to the Iraqis in the 1980′s. As a matter of fact, the US ARMY Borden Institute states that the 1999 West Nile outbreak in New York was most probably initiated by Iraqi operatives as the strain DID match one that was sent to Iraq from US Type Culture. If you look at the copy of the report listed above you can see it was sent in April 26th, 1985 to the Iraqi Minister of Health.

    So, when I say that “Lyme Disease” is actually a combination of infectious agents instead of just Bb, that is correct. The report above states, “the use of such concentrations could result in the breakdown of individual immunity due to the large number of micro-organisims entering the body could overwhelm the body’s natural defenses.”

    1. WilliamLawrenceUtridge says:

      Wow, that is an enormous “citation needed”. Could they even sequence a genome in 1985? I mean, you aren’t just in tinfoil hat territory here, you’re verging on “alien lizards rule the earth”.

  24. OspA/Brian says:

    Here is the link for the report: http://www.archive.org/stream/unitedstatesdual00unit/unitedstatesdual00unit_djvu.txt

    Here is the link for the Borden Institute: http://www.cs.amedd.army.mil/borden/Portlet.aspx?ID=66cffe45-c1b8-4453-91e0-9275007fd157

    Read all the chapters if you can. LLMD’s will run tests for some of these co-infections and not surprisingly they will be Labcorp positive (since most of you would comment that “well it wasn’t done at a FDA approved lab!” Labcorp and Quest are not FDA approved, only the CDC lab is.)

    Tularemia, Brucellosis and Q Fever are the most prevalent infections found in Lyme patients.

    http://cid.oxfordjournals.org/content/32/6/897.full

    http://www.researchgate.net/publication/230590473_Q_Fever_with_unusual_exposure_history_a_classic_presentation_of_a_commonly_misdiagnosed_disease

    For you that believe I am some yahoo, my research info comes from several friends in DoD HAZMAT, DoD Redstone Arsenal, a missile specialist that deals with Soviet style missiles and payloads, a “first responder” that lased targets in the first Gulf War and captured Iraqi military and civilian airports. There IS a co-relation to GWI and Lyme disease and it is OspA fungal lippopeptides and numerous chronic intracellular infections causing immunosuppression.

    1. vadaisy says:

      “Lyme Disease” is actually a combination of infectious agents instead of just Bb

      For you that believe I am some yahoo, my research info comes from several friends in DoD HAZMAT, DoD Redstone Arsenal, a missile specialist that deals with Soviet style missiles and payloads, a “first responder” that lased targets in the first Gulf War and captured Iraqi military and civilian airports.

      I do not think that the data and sources you posted mean what you think they mean.

    2. WilliamLawrenceUtridge says:

      What exactly are the links to military archives supposed to demonstrate? Neither of the two you provided mentioned lyme, borrelia or burgdorferi at all, and only mentioned “ticks” in the context of completely different infections. I mean, the report might have used the line you state in your previous comment, it’s just utterly unrelated to Lyme disease and seems totally irrelevant. Your scholarly citations appear similarly irrelevant – the second doesn’t seem to mention Lyme either, and the first is more than 10 years old; has it been replicated?

      You seem to think that if you can stitch together some chain of reasoning, no matter how speculative, that it justifies your beliefs and somehow cannot or should not be challenged. That’s not how reality works, and in particular that’s not how science works. That is how a conspiracy theorist or schizophrenic person would justify things, but there is a reason why neither are considered exemplars of rigorous reasoning.

    3. weing says:

      I get suspicious when government documents misspell “United States”, “veterans”, etc

    4. weing says:

      I can see, from the oxfordjournal reference you gave, that you have difficulty reading scientific papers. Lyme disease is an element of the set of tick borne diseases. It’s not the other way around.

      1. OspA/Brian says:

        They are all transmitted together and can overwhelm immune systems via mass attack OR your immune system could be holding one or more infections under immune surveillance until overwhelmed. I’m sure you yourself can find the data on that.

        1. WilliamLawrenceUtridge says:

          OR all of these unproven assertions and untestable infections are neither true, nor infectious.

          We know what an “overwhelmed” immune system looks like, and it’s basically “death”. AIDS patients have objective markers of destroyed immunity, most notably the kinds of diseases that kill them. The same with cancer patients whose cancers or treatments destroy the immune system. What they don’t have are subjective pain, confusion, and the other nonspecific symptoms that appear to be the hallmarks of chronic Lyme disease. Does anyone in your group of CLD believers have Kaposi’s sarcoma? If their immune system is overwhelmed, why not?

          1. OspA/Brian says:

            OR these infections DO exist and as I posted with the BORDEN INSTITUTE information, they are considered agents of biowarfare with tests ( it’s just standard PCP’s and even ID docs don’t test for them especially if they exist with very low levels of detectable bacteremia) If a ID doc does not test for it, is it like a tree in the woods falling down, does anyone hear it? Look for no disease, report no disease is their mantra.

          2. WilliamLawrenceUtridge says:

            …except none of the documents you provided substantiated any of your assertions, just vague speculations and long chains of paranoid reasoning. Just because you can hypothesize a connection doesn’t mean it exists. You may be unhappy and suffering, or someone you know might be, and you have my sympathy. But that doesn’t mean your symptoms are caused by Lyme tick bites.

  25. vadaisy says:

    What does “chronic Lyme disease” mean?

    Congressman Chris Gibson wants to legally define it as anything your “LLMD” wants it to mean. No need to evidence an infection, and “LLMDs” prescribing long-term treatment will be protected under the law.

    This bill amends the public health law to add a new article relating to the diagnosis and treatment of Lyme disease. This new article defines Lyme disease to include infection which meets the surveillance criteria set forth by the US Centers for Disease Control and Prevention (CDC) and other acute and chronic manifestations of such an infection as determined by the physician. In addition, it sets forth that licensed physicians may prescribe, administer or dispense long-term antibiotic therapy for a patient with Lyme disease.

    This new article denies the right of the medical board to deny, revoke, or suspend the license of a physician or discipline any physician who prescribes, administers or dispense long-term antibiotic therapy for therapeutic purpose for a patient clinically diagnosed with Lyme Disease,…

    Under Gibson’s proposed law, the “LLMD” who treated a patient for years under a clinical diagnosis of “chronic Lyme disease”, despite negative test results on 17 ELISAs, 17 negative Western Blot IgG, 17 negative Western Blot IgM, and 9 negative PCRs, would be practicing within the standard of care set forth under the law. What kind of ‘care’ is that? Who’s looking out for the best interest of the patients?

    1. vadaisy says:

      There is a correction to the comment above in that New York Senator Terry Gipson of Poughkeepsie, New York is the Sponsor of New York Senate Bill S5520A-2013, not Congressman Chris Gibson.

  26. Yes WLU it does sound like that some paranoid thinking and if that’s the case all the arguing in the world won’t make much difference, because the brain is sending alot of misinformation and that totally sucks for him.

    Hopefully that’s not the case, hopefully he’s just the garden variety true believer.

  27. Ephraim says:

    So its ok to put ppl on doxy for several months for acne, but not for cronic lyme. If cronic lyme is fake, then why do I test positive for lyme? And why do I feel bttr after several months of abx. Tell me again what happens when I use abx for along time?

    1. weing says:

      “Tell me again what happens when I use abx for along time?”
      You mean, if they aren’t necessary? Well, for one thing, you are using something that could be used by someone that really needs it. By increasing the demand for it, you increase the cost to those that truly need the antibiotic and increase the profits of the manufacturers.

      1. whencarsfly says:

        @weing – said: “Well, for one thing, you are using something that could be used by someone that really needs it. By increasing the demand for it, you increase the cost to those that truly need the antibiotic and increase the profits of the manufacturers.”

        So are you saying that a patient should avoid a prescribed treatment that is dramatically improving symptoms to keep the cost of abx down and minimize the profits of manufacturers…help me wrap my brain around THAT logic.

        1. weing says:

          “So are you saying that a patient should avoid a prescribed treatment that is dramatically improving symptoms to keep the cost of abx down and minimize the profits of manufacturers”

          Learn to read. I want the costs to be kept down for people that truly need the antibiotics. You are assuming your CLD patients are improving. Your assumption has not been verified by studies. They remain the same whether they get the antibotics or not.

    2. WilliamLawrenceUtridge says:

      Doxy cures acne, and acne exists. You may test positive for Lyme (assuming the agency testing you is valid and uses the correct tests done properly) but unless you have post Lyme syndrome, that positive test might be completely unrelated to your symptoms.

      Why do you feel better? There are any number of reasons – symptoms come and go, you may be reassured, leading to your sleeping better, whatever was making you feel miserable may have resolved itself (totally unrelated to abx), the symptoms may have forced you to take a break from a stressful job, or abx may have cured the hitherto-undemonstrated chronic infection of the Bb bacteria. The point is, you don’t know and pretending that because you got better, this validates the whole of chronic Lyme disease, is a rather egregious post hoc ergo propter hoc. I’m sure it convinces you, but that doesn’t make it the truth.

      1. OspA/Brian says:

        So why is it Labcorp and Quest use a German strain B31 that drops plasmids? Willie Burgdorfer even said this was fraud. And during the Dearborn Conference where all diagnostic labs INCLUDING Igenex could not isolate the Bb except in maybe 15% of the results utilizing this strain. All the labs objected stating that using current media, the tests would not be a good diagnostic tool. Certain labs utilize not ONLY B31 but also an isolate from American Type Culture that matches the Old Lyme Conn strain. That’s why their tests appear to have more “positives”

        1. WilliamLawrenceUtridge says:

          I would ask “why does this chain of reasoning not convince infectious disease experts”?

          1. Bambi Albert says:

            The infectious disease “experts” are as clueless to this disease as you are. I know because I saw plenty. and guess what, after educating them I left their office saying, u can bill me if you want but I wont pay, and guess what? I got no bill…..

          2. WilliamLawrenceUtridge says:

            That’s probably because they understand the literature from a conventional medical, which is to say, scientific, perspective. If you indeed believe you have chronic Lyme disease, then I could see why they didn’t know that much about it (since the scientific literature is null, though the internet’s vast chyme of information contains many a half-baked slurry of questionable notions).

    3. Whencarsfly says:

      @ephraim your time would be best spent elsewhere; the title “science based medicine” is a misnomer as it relates to understanding chronic borreliosis and related vector-borne illnesses.

      1. weing says:

        “the title “science based medicine” is a misnomer as it relates to understanding chronic borreliosis and related vector-borne illnesses.”

        Because you’ve decided that just making claims is the true science?

  28. Melissa Bell (FLDA) says:

    It looks like the SBM witch hunt for “rogue” doctors who treat for longer than the IDSA guidelines will be quite busy. According to new government data obtained by the Poughkeepsie Journal, a majority of Lyme disease patients (56%) are being treated with antibiotics for longer than CDC endorsed IDSA guidelines recommend, a sign doctors may be rejecting controversial protocols in favor of patients who remain ill after receiving them.

    The revelation comes from a federal study that concluded there are likely 300,000 Lyme disease cases annually, a tenfold rise from official reports and an acknowledgment of the illness’ reach across America. The research also indicates that nearly 4 million Americans have had Lyme disease, giving details on who they are and how they fared.

    1. vadaisy says:

      It looks like the SBM witch hunt for “rogue” doctors who treat for longer than the IDSA guidelines will be quite busy. According to new government data obtained by the Poughkeepsie Journal, a majority of Lyme disease patients (56%) are being treated with antibiotics for longer than CDC endorsed IDSA guidelines recommend, a sign doctors may be rejecting controversial protocols in favor of patients who remain ill after receiving them.

      If you only survey the “LLMDs”, then you will indeed find that most doctors are “bucking” the Lyme disease treatment protocols by prescribing long-term IV antibiotics. If you survey the “LLMDs” who have had complaints filed against them with the medical boards, then you will indeed find doctors who whine about being persecuted by the government. Creative statistics and poor ‘journalism’.

      Mary Beth Pfeiffer, the Poughkeepsie Journal reporter appears to have teamed up with Lyme Disease Association representatives, “LLMDs” who have been accused of gross misconduct, negligence and fraud, as well as several elected officials in New York. The documentation of their budding relationships is evident online throughout their public speeches and writings. She is not merely an unbiased reporter documenting the treatment of Lyme disease or other happenings. She has placed herself as an active participant in her own reports, helped incite the controversy while coincidentally publishing a series of articles, and built unprofessional relationships intertwining her work and personal life with the subjects of her own reporting. She is not a “journalist”; she is a biased activist misrepresenting the treatments and activities of the “Lyme-literate” medical doctors and misrepresenting the nature of investigations into dangerous practitioners.

      1. WilliamLawrenceUtridge says:

        Oh, I thought the Poughkeepsie Journal was some sort of sixth-string medical journal. It’s a newspaper? Totally worthless then.

        1. vadaisy says:

          Oh, I thought the Poughkeepsie Journal was some sort of sixth-string medical journal. It’s a newspaper? Totally worthless then.

          Those that followed the claims regarding the spread of the Morgellons disease ‘epidemic’ might have noticed in part that the geographic hot spots for Morgellons disease coincided with the medical practice locations of the ‘experts’ diagnosing the condition. Whenever one expert would relocate, say from Texas to California and then to Washington, D.C., an increase in the occurrences of Morgellons would appear in those locales.

          The claims of “witch hunts” are similar in many ways to the spread of Morgellons. As investigations into the alleged fraudulent or negligent activities of certain practitioners becomes apparent, the occurrences of “chronic Lyme disease” proliferate in their support and defense.

      2. Melissa Bell (FLDA) says:

        “If you only survey the “LLMDs”, then you will indeed find that most doctors are “bucking” the Lyme disease treatment protocols by prescribing long-term IV antibiotics.”

        You once again make false assumptions in a desperate attempt to to support your vicious prejudice against those suffering from CLD and the LLMDs who treat them. The information was procured through the CDC’s own recent surveys (not a survey of LLMDs). These are the same surveys that revealed that the actual number of cases is 10x higher than reported for decades (300,000 cases rather than 30,000 cases).

        1. vadaisy says:

          You seem to criticize others who make statements when you personally have not been entitled to their degree or extent of expertise or level of experience, yet you make bold and unsubstantiated statements wildly out of proportion from the evidence presented. Perhaps you don’t give the public enough credit and don’t think they can read the survey data themselves and know nothing about the types of diagnostic methods and treatments actually being sold by “Lyme-literate” doctors.

          In the referenced CDC study, you left out this finding about the surveyed participants and their treatment/recovery-

          Consistent with existing literature.

          1. Melissa Bell (FLDA) says:

            Who are you to judge my experience compared to others? I am highly educated and have researched Lyme Disease and co-infections for hours each day for over a year and a half, which research saved our son. I have real life experience with LD and co-infections, unfortunately.

            You claim that I “know nothing about the types of diagnostic methods and treatments actually being sold by “Lyme-literate” doctors” which is absolutely false. We have vetted our medical team carefully and have first hand experience.

            What is your experience? A friend or two died due to Lyme Disease? You claim they died due to the treatment, but do you know that for a fact? Who were their LLMDs who allegedly committed malpractice? Were the LLMDs sued for malpractice?

            Your quote does not in any way undermine my posts. I have not made “unsubstantiated states wildly out of proportion from the evidence presented”. If you have a specific statement you are challenging, then do so, with facts and links to scientific authority, rather than attack my statements generally. I have cited to authority to substantiate my claims here.

            Posters here have claimed that doctors who treat outside of IDSA guidelines should use their medical license. According to the CDC’s recent surveys of thousands of participants, the majority of doctors are in fact treating outside of those guidelines.

          2. “Who are you to judge my experience compared to others? I am highly educated and have researched Lyme Disease and co-infections for hours each day for over a year and a half, which research saved our son.”

            I don’t know about vadaisy but I don’t need to judge your “experience” I can just judge your actions and for someone who claims to have spent so much time studying something you simply don’t appear to have learned very much.

            Your interpretation of Embers et. al, your constant yelping about accuracy in testing evidences someone who didn’t really understand very much of what they read.

            “What is your experience?”

            My experience is understanding a little bit about math and statistics and how that part of science works. By some stroke of luck (for me) it’s one of the keystones of modern medicine.

    2. WilliamLawrenceUtridge says:

      SBM has no “witch hunt”, we are commenters on a blog. The construct of CLD, and its supporters, appears rather fragile if it can not survive the kind of basic questions asked here, and if that is the case, it certainly doesn’t deserve to have political support forcing it into treatment guidelines. It is not a “witch hunt” to point out that CLD has little empirical support, both in terms of specific findings, and in terms of the underlying knowledge of the immune system.

      The number of patients who are getting antibiotics might also reflect the number of LLMD doctors who accumulate patients that demand long-term antibiotics, or the number of patients who are forcing or demanding scientifically unjustified treatments, or the intrusion once again of politics into medicine – but at this point nobody knows. The popularity of a treatment does not validate it scientifically – bloodletting, the standard example, was extremely popular,and killed patients faster than no treatment.

      The reality may be that chronic “Lyme” disease has absolutely nothing to do with Lyme disease.

    3. Whencarsfly says:

      It seems that when it comes to the SBM “post Lyme” folks, it’s not the nature of the evidence, it’s the seriousness of the charge. Present all the evidence you like, they’ll continue the LLMD witch hunt.

      Because some LLMDs are being investigated does not mean they are guilty. I have to question who initiated the investigations and for what reason…

      1. WilliamLawrenceUtridge says:

        Actually, if you present valid scientific evidence in a peer reviewed journal that chronic Lyme disease has valid laboratory findings that link it to chronic Bb infection, you might convince some of us.

        Just because you question who initiates the investigation and for what reason doesn’t mean the patients treated are not victims of medical malpractice.

  29. OspA/Brian says:

    Here is the digital version of the Special House subcommittee on Dual Use agents and soldies/spouses/children, etc as you seem to be concerned with the way a transcribed version had some typos. http://archive.org/stream/unitedstatesdual00unit#page/n1/mode/2up

    I’m sure you are all under the impression the US and foreign goverments tell the truth when it comes to secrets that are of National Security concern. My nephew is the North Korean and Soviet Missile weapons specialist at Wright Pat AFB in Dayton. He told me I would not believe 99% of the classified material he sees on a daily basis. He has diplomatic and top secret clearance. He won’t spill secrets but he WILL point in the right direction to declassified items that people would have to do VERY direct and pinpoint searches to obtain.

    1. WilliamLawrenceUtridge says:

      I’m not sure how “the government lies”, a general statement that is true, translates into “chronic Lyme disease definitely exists”, a specific statement that is probably not.

      I’m not expecting an answer. Well, at least, I’m not expecting a coherent, rational and above all convincing one.

      Look, you’ve already hit us with your “big guns”. You’ve dropped the most convincing studies and chains of reasoning you can. You are currently dipping into speculative conspiracy theories relying on government documents you can’t even specifically link to. Unless one of them says quite clearly “chronic Lyme disease is the product of government bioweapon research”, then laying out your speculations just makes you look more crazy, it does not make your speculations look more convincing. Maybe it’s time to put down the stick and back away from the horse.

      1. OspA/Brian says:

        Dead horse, meet stick….nice. Maybe YOU should look a little closer at the forest, instead of concentrating on the tree. Why don’t you actually read the Borden Institute texts and the book entitled “GERMS” by Judith Miller and 2 others where it is explained IN GREAT DETAIL and footnoted about the germ warfare program going on between developed nations, especially the US and Russia. She went to federal prison for 8 months for not exposing her contacts. Her work is bulletproof. You act as if there should be a press conference via the CDC stating what they are doing directly. I’m sure you are familiar how we are targeting certain population subsets with genetic biowarfare, correct? If not, keep being a Columbus detractor stating that we are all wrong and the Earth is still flat. But I DO find it interesting that 99% of the women I have interviewed with the same symptoms both military and non have had a hysterectomy. Bacterias that cause tumors to develop in certain locations, especially the uterus. That would be a convienient way to keep the population down. And that is verified via several Gynos I have talked to. More and more younger women are getting cysts and hysterectomies and the gynos are not sure why. But it does the same thing in mice that are infected. PubMed: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1326447/

        1. WilliamLawrenceUtridge says:

          You mean this book?

          Columbus knew that the world was round, he was just wrong about how big it was.

  30. lilady says:

    Cripes almighty. Lyme disease is “under-reported” for the simple reason that doctors provide patients who reside in Lyme-disease endemic areas or who have a history of recent travel to Lyme disease-endemic areas and who present with an expanding bull’s eye rash. Serum tests (ELISA-Western Blot), may be negative, when antibiotics are prescribed by the physician…therefore labs which are negative, and never get reported to the local health department. Doctors are “notorious” for not reporting “reportable diseases”, in spite of State Health Department regulations that require them to do so http://www.health.ny.gov/forms/instructions/doh-389_instructions.pdf .

    (Anecdotal) When I worked as a public health nurse-epidemiologist at a large suburban health department, there were several instances where a pediatrician or a family practice doctor DID NOT notify the local health department about a suspect measles case. The notification came from the laboratory which tested serum for positive IGM antibody.

    The person up-thread who stated that “only 50 % of people infected with the B.burgdoferi bacterium present with a bull’s eye rash”, is incorrect. Ticks prefer warm, damp, dark areas (armpit, under breast and groin) on the human body to attach themselves for a blood meal. The atypical….or typical bull’s eye rash…may be present…but the patient is unaware of the rash because it is hidden from their view, and, because they do not have a pruritic reaction (itching) to the foreign protein in the tick’s saliva.

    The person up-thread who stated that the B. burgdorferi bacterium is in the bloodstream and travels to the expanding borders of the bull’s eye rash is dead wrong. Deep punch biopsies performed at the perimeter of the expanding bull’s eye rash do yield B. burdorferi spirochete bacteria that is being disseminated through the capillaries bed to the bloodstream. The bacteria from these biopsies, have been visualized under the microscope.

    I believe I had excellent mentors when I worked as a public health nurse clinician-epidemiologist at a New York State suburban health department, including Dr. John J. Halperin for information about neurological Lyme disease http://www.ncbi.nlm.nih.gov/pubmed/?term=john+halperin+lyme+disease and Dr. Sunil Sood for information about pediatric Lyme disease http://www.ncbi.nlm.nih.gov/pubmed/?term=sunil+sood+lyme+disease

    It’s about time that credulous patients who now diddly about Lyme disease, get some education about LLMDs, the bogus blood tests and bogus LUATs (Lyme Urine Antigen Tests) that are employed by quack practitioners to suck patients into believing they have “Chronic Lyme Disease”. Their decisions to undergo treatment with massive doses of IV antibiotics and other bizarre IV treatments, have consequences:

    http://www.lymeneteurope.org/forum/viewtopic.php?f=12&t=2136

    lilady, R.N. B-Sc-Nursing, Public Health Nurse Clinician-Epidemiologist (Retired)

    1. lilady says:

      Apologies for my typos in the comment above. It would be nice if the comments platform had a spell-check and previews section. lilady

  31. Robert J says:

    Look, pretty much all the world’s problems can be attributed to attitudes like THIS, or people who know NOTHING about a particular problem yet pretend to know how to address it or even solve it. First of all, there is NO “reward” for getting a CLD (chronic Lyme disease) diagnosis. Virtually ALL mainstream medical professionals ridicule you, you don’t even get offered palliative care, to minimize your symptoms, and your friends and family (generally speaking) abandon you. So where’s the upside?

    Thank god for the internet! Because people with CLD are so disabled they cannot find “support” through typical avenues; like local support groups (they are few and far between), or support from the community, their church groups, or friends and family. Heck, most cannot even get sympathy from their general practitioner, in most cases. So they find one another (via the internet) in order to share the horrors of their circumstances, while encouraging each other to endure another day with the hopes that “tomorrow” will be a better day.

    My story (in a nutshell): Likely got bit by a tick in 1971 (at age 10). Had flu-like symptoms for a month, but doctors couldn’t figure out what was wrong with me. Then I got a case of Bell’s Palsy (the left side of my face was paralyzed). Got hospitalized, and had more tests done. Got a diagnosis of encephalitis. I survived it and went on my merry way. One year later, I began suffering from swollen knee joints (alternating between the left and right knee). Got diagnosed with Juvenile Rheumatoid arthritis. Miraculously, it cleared up after a few years. Next, I got appendicitis and had to have my appendix removed. I struggled through my high school years with horrible fatigue. Could barely stay awake in class. Thought life would get easier after graduating from high school. It didn’t. Managed to complete some college and go to work for a power utility company. I worked a solid decade before going on disability.

    About 5 years later, I got the chronic Lyme diagnosis. Treatment nearly killed me due to the herxheimer, but I was told I would feel worse before feeling better. I gave up (treatment) after two years. Then I went the psychiatric route, because it was much easier and far less expensive. Got put on virtually every antidepressant (and psych drug) on the market over about a 10 year period of time. My physical symptoms only got worse, as well as my emotional symptoms.

    When you cannot even do the things you love to do and really WANT to do, how is that NOT supposed to make you feel depressed?

    Finally resumed treatment for Lyme because I was able to access my retirement savings. Sometimes hope (even FALSE hope) is better than NO hope at all. SO STOP CRITICIZING people who are fighting desperately to stay alive, with hopes that “tom morrow” will yield a better day if only they adhere to the recommendations from their LLMD!

    Here’s the thing: I don’t know FOR A FACT that I have chronic Lyme, but until some doctor offers a better explanation for what is wrong with me, I’m going to assume that CLD is responsible for my debilitating symptoms. And I will do whatever it takes to rid myself of this infection, or whatever it takes to minimize the symptoms so I can enjoy a marginally better quality of life.

    For the record, the “pain and fatigue” I commonly complain about, while a common complaint amongst the masses, is in NO WAY, shape, or form, similar to the “fatigue” that everyone experiences (like after a full days of work). Hell, I cannot even get through a MOVIE I want to watch (all the time) due to the fatigue I’m stricken with multiple times per day. At least once per week I feel so bad that I feel as if “death were imminent.” I’m talking about pain and fatigue so severe that you can only ASSUME you’re about to pass away. Feeling the way you EXPECT to feel, right before death, over and over and over again, can really wear you down. Imagine facing the “horrors” of imminent death, multiple times per month, year after year?

    The discipline required to get through a typical day (even when not working) is mind boggling too. Keep in mind that over 300 strains of Borellia Burgdorferi (the bacterium that causes Lyme) have been identified to date. And often there are “co-infections.” What this means is that NO two cases of Lyme (or CLD) are the same; it’s almost a statistical impossibility!

    Final thoughts: I’d MUCH prefer to have cancer! I might not live as long, but at least I would get ALL the support I needed, and all the palliative care I required, right up until the end. It’s absurd to think a CLD patient is “enjoying” this somehow!!! Thanks for “listening” to me, if you got this far. ;)

    1. weing says:

      Clearly you are suffering. I don’t know what you have. You should see your doctor and have him refer you to an academic center if he can’t figure out your problem. No two pneumonias or bladder infections are alike either but they are mostly treatable.

    2. “So where’s the upside?”

      Good question.

      “Thank god for the internet! Because people with CLD are so disabled they cannot find “support” through typical avenues; like local support groups (they are few and far between), or support from the community, their church groups, or friends and family. Heck, most cannot even get sympathy from their general practitioner, in most cases. So they find one another (via the internet) in order to share the horrors of their circumstances, while encouraging each other to endure another day with the hopes that “tomorrow” will be a better day.”

      Good answer. :-) Having a diagnosis – even one that is probably wrong is often perceived as better than no diagnosis. You appear to fall into this camp.

      “Feeling the way you EXPECT to feel, right before death,”

      Do most people expect to die painfully? I don’t have any expectations about my death.

      “but until some doctor offers a better explanation for what is wrong with me, I’m going to assume that CLD is responsible for my debilitating symptoms.”

      More likely nothing will qualify as “better” in your eyes. Fabricating a single disease which can have over 1500 entirely distinct presentations (this is probably greater than all ASD’s put together) is always going to appear to fit better than any other explanation.

      This is the paradox of complex models and why it’s generally a bad idea to avoid them.

      1. Should read “embrace them” not “avoid them”

    3. WilliamLawrenceUtridge says:

      I don’t know FOR A FACT that I have chronic Lyme, but until some doctor offers a better explanation for what is wrong with me, I’m going to assume that CLD is responsible for my debilitating symptoms.

      Look, I’m sorry that you have such debilitating symptoms. I’m sorry no answer has been found for you. I’m sorry that there is no scientifically proven treatment. But I have highlighted the relevant parts of your story. You may assume your symptoms are caused by Lyme, but that doesn’t mean they are.

      Your choice of treatment is your own. It may work, it may make you feel better, it may even be curing whatever condition you have – but you don’t know. Your personal anecdote doesn’t justify advocacy for the treatment to be supported, doesn’t justify harassing researchers, it doesn’t justify rendering antibiotics useless, and it doesn’t justify claiming you have a solution.

      I’m sorry science works slowly, I’m sorry it can’t solve all of the world’s problems right away, I’m sorry it requires certainty. But me being sorry and you having debilitating symptoms don’t mean that the chain of reasoning CLD advocates put together is correct. Reality is a bitch, and she doesn’t give a damn about what people want, but if you ask the right questions she does give answers.

  32. “Do most people expect to die painfully? I don’t have any expectations about my death.”

    I believe the majority of diseases and accidents that result in death are painful. One can hope for good palliative care, sure, but cancer, strokes, heart attacks, car accidents, falls, etc, generally not considered a walk in the park.

    1. So looking at Canada’s age-adjusted COD percentage. Circulatory and Cancer seem to be the top two for those 65 and over. Seems reasonable that those could be painful if untreated. I haven’t seen untreated cancer cases since I toured a hospital in Malawi.

      1. JG “So looking at Canada’s age-adjusted COD percentage. Circulatory and Cancer seem to be the top two for those 65 and over. Seems reasonable that those could be painful if untreated. I haven’t seen untreated cancer cases since I toured a hospital in Malawi.”

        You think only untreated circulatory disease and cancer are painful? Geez, I’ve heard young people are insulated from death, but I didn’t think it was that bad.

        My Mother, Father, SIL and FIL died from treatedcancers. I sorry to inform you, it’s painful. Good palliative care and hospice makes it better, but there is still real, significant pain. Pretty much any time they wanted to be able to interact with family, friends, medical or legal people they were in pain.

        I don’t even know what your point would be trying to deny that. Perhaps it’s a miscommunication.

        1. The poster I was responding to was being pretty emphatic about their pain. e.g. “I’m talking about pain and fatigue so severe that you can only ASSUME you’re about to pass away. ”

          While I have experienced pain at no point have I assumed that I must be dying so if I’m taking them seriously then it would seem that the “pain bar” is set pretty high. I have no doubt that people who are sick experience pain. However it seems “so severe that you can only ASSUME you’re about to pass away. ”

          To date I’ve watched my uncle, grandmother,grand-mother-in law and multiple aunts and friends of the family die of various cancers. Some seemed to have pain, others went rather peacefully. I have yet to see one die screaming but perhaps we’re just a subdued lot over here.

          On the plus side I’ve watched my sister and my aunts and uncles survive.

          1. The following ‘However it seems “so severe that you can only ASSUME you’re about to pass away. ”’

            Should read: ‘However it seems pretty rare to encounter pain “so severe that you can only ASSUME you’re about to pass away.”

            Similarly: “sister and my aunts and uncles” should read “sister and other aunts and uncles”

          2. He was saying is that he has intense pain and fatigue feels a sense of doom associated with it. Or he was using different wording for the common phrase, “It hurt so bad I thought I was going to die.”

            The end result is that he is saying his symptoms seriously undermine his quality of life and scare him. It seems silly to nitpick that based on the particular words he chose. It’s semantics.

          3. Perhaps I am nitpicking. I will say that when I read what you describe it sounds significantly less painful that what I assumed.

        2. JG – “I will say that when I read what you describe it sounds significantly less painful that what I assumed.”

          Hm, I don’t get what you are saying, but I’m fine with dropping it, since I’ve had my say. :)

          Probably I’m reading thing differently. I will add that in many of the forums I read, which are auto-immune forums of conditions like SLE/UCTD and to a lesser degree Scleroderma and RA, some people describe their symptoms more dramatically then you might expect. In society, there is a sort of a taboo about talking about your symptoms, particularly to a person who is healthy. Patients (I think) are rebeling against politely having to act like they feel okay when they don’t. They feel misreable.

          There is also a certain amount of frustration at having to relay on a series of doctors who “believe” and treat patient reported pain or fatigue to different degrees behind some of the venting.

          I just take that all as normal human reaction to a shitty* situation.

          *pardon my language, I just can’t think of a word that describes what I’m saying better.

          1. Pam says:

            Maybe that’s the only thing JG can come up with, since it’s so obvious that the research on this subject was never done with any seriousness and now he’s caught with “his pants down” so-to-speak? We all get embarrassed and stumble over our words and don’t have much to say once we are caught like that!!

          2. “some people describe their symptoms more dramatically then you might expect.”

            Perhaps that’s what I wasn’t seeing.

            “pardon my language, I just can’t think of a word that describes what I’m saying better.”

            Fact: All Canadians have at some point in their lives lived with Lumberjacks.

            Fact: Lumberjacks form the densest repository of swearing in the country.

            No problem. I’ve heard worse. :)

          3. “since it’s so obvious that the research on this subject was never done with any seriousness”

            Research on what exactly? Oh and when you respond don’t forget to include a study you didn’t really understand. Just for consistency.

          4. Pam says:
            “Maybe that’s the only thing JG can come up with, since it’s so obvious that the research on this subject was never done with any seriousness and now he’s caught with “his pants down” so-to-speak?”

            Firstly, this is one small point in a few hundred comments. JG has had many other valid points.

            Secondly, unlike you, he’s not advocating unethical experimentation on Lupus patients, so it’s not really relevant to the actual topic.

  33. Robert J – I’ve heard similar stories, without the CLD, in autoimmune disease forums I’m sure they are out there for many people who have difficult to diagnose conditions. It sucks, you have my sympathy.

    I agree with weing. Go back to your doctor and ask to be referred to an academic center if that’s not helpful. I hope that your doctors have considered auto-immune connective tissue diseases, especially since it appears you had RA as a child. I think some doctors may forget to consider these diseases in men, since they are more prevalent in women. I’m not doctor and I’m not suggesting you do have one of these condition, but it should be looked at.

    Here’s a link to an article about the pitfalls of self-diagnoses and tips on working with your doctor. You may be familar with all this, but I found the tips helpful.

    http://arthritis.about.com/od/buildyourhealthcareteam/a/patienteducate.htm

    Ignore that’s on on site about arthritis, it’s pretty general.

    Hope you find some answers that can get you some relief.

  34. OspA/Brian says:

    exception to your beloved Koch’s Postulate. Bartonella-Lyme co-infection. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC119901/

    1. weing says:

      Didn’t see anything there about a Lyme co-infection. Do you know what asymptomatic means? If you do, what would asymptomatic bacteremia mean? Now, see if you can figure out the difference between infection with a bacteria/virus and disease. Are they the same? Hint! Why not?

  35. Pam says:

    Are you serious? Who are you to question the facts? And if you don’t know the Scientific facts -which it’s clear that you don’t – then why are you writing an article when you don’t know a thing about the subject?
    Have you spent over 5 years studying the facts? I have.
    Have you had ANY of these diseases? I have.
    If your answer is no to either one of these questions, you have no business writing an article when you refuse to do the research needed.

    The SCIENTIFIC facts are:
    Lyme disease, Bartonella, Babesia, Rocky Mountain Spotted Fever, Ehrlichia, Anaplasmosis, Tularemia are all here and are all infectious. They can be spread by many means, including through people. Doubt this? Take a look at what even the Red Cross has had to admit to: Babesia is in our blood supply!
    The majority of the blood tests that is currently in use, simply cannot be trusted to show positive to all those that truly have these diseases. Doubt this? Look at all the studies done on these tests – they all say that these tests miss up to 50% of those that truly have these diseases.

    PLEASE do your research before writing about something that you have no clue about.

    1. vadaisy says:

      Nothing in this article contradicts the state of the science. Dr. Hall is a medical doctor who is highly competent and able to assess the information presented. Dr. Crislip is an infectious disease physician. No where have either of them stated that Lyme disease or Bartonella, etc., are not infectious.

      None of your statements have any relevance on the claims in the subject of this article. Your statements are not in reference to “chronic Lyme disease”, evidence that it is a persistent infection requiring persistent treatment, or the ridiculous scam claiming that anyone with an unknown disease or syndrome must have “chronic Lyme disease”.

      1. Pam says:

        Let’s keep things simple, shall we? You’re from the IDSA camp, and I’m not. You view the IDSA guidelines as truth, and I don’t. That being the case, can you explain why this article is in existence?: http://www.ncbi.nlm.nih.gov/pubmed/20946067
        Created Nov. 15, 2010 – “Quality and strength of evidence of the Infectious Diseases Society of America clinical practice guidelines.
        Khan AR, Khan S, Zimmerman V, Baddour LM, Tleyjeh IM.”

        And I quote:”The IDSA guideline recommendations are primarily based on low-quality evidence derived from nonrandomized studies or expert opinion. These findings highlight the limitations of current clinical infectious diseases research that can provide high-quality evidence. There is an urgent need to support high-quality research to strengthen the evidence available for the formulation of guidelines.”

        This article was not written by someone who has Lyme and is claiming to know. This article appears on Pubmed. Like I said – do some research before speaking out of turn.

        Don’t believe what’s being said? You still have not answered the question I asked, Do you or someone you love have or ever had chronic Lyme disease? If not, then don’t tell me that the symptoms of this “PTLDS” are anything other than chronic Lyme untreated thanks to outdated guidelines.

        1. WilliamLawrenceUtridge says:

          That you think the IDSA guidelines are regarded as truth might be part of the problem. You seem to think that there is fixed certainties. The reality is, science is iterative and replicable. The article you cite actually points to this. It’s calling for more and better research. The fact of the matter is, the best research we have fails to support the existence of CLD. The document you cite regarding the IDSA actually makes your position worse, because the level of proof generated for CLD is far, far worse than the IDSA guidelines for Lyme treatment.

          Also, the deepness of anguish you feel for a family member’s pain has no bearing on whether CLD is due to Lyme disease. That is a hypothesis, which has thus far been falsified by all good tests undertaken. You may find this frustrating, just like genuine researchers and doctors and scientists find your ongoing advocacy, criticism and frenetic claims frustrating. The difference is, they will change their mind in the face of good evidence.

          It is doubtful that you ever will.

          And that’s a far greater conflict of interest than any that the members of the previous expert panels ever had. Certainty and emotions are no substitute for evidence; generally they are quite the opposite.

          1. Pam says:

            The only reason your research fails to support CLD is because you are limiting your research. Plain and simple.

            Are you serious?? “on whether CLD is due to Lyme disease”. What do you think those letters stand for? In case you are confused, they stand for “Chronic Lyme Disease”, how could that NOT come from Lyme disease?

            It’s more than obvious that you will never change your opinions (thank the heavens that all it is – your opinion), as I have changed my mind due to the overwhelming evidence and scientific proof that not only does Chronic Lyme exist, this is a much bigger problem that those of your kind ever wish to admit.

            Why else would the CDC finally come out and admit that there are actually 300,000 cases of Lyme each year – which translates to a whole lot of people that were told that they don’t have this disease during those years that the CDC simply hid it’s head, simply because of political positioning. What do you suppose happened to all of those that came before the CDC changed it’s stance on the number of people that have Lyme? And where did the CDC get these numbers if it wasn’t for those that stand on the side of really researching these diseases?

            Another thing that has no place in this discussion, willful ignorance which you choose to stubbornly hold on to. This is also what’s wrong with the IDSA – willful ignorance, so at least you aren’t alone.

          2. WilliamLawrenceUtridge says:

            How could “CLD” not be related to Lyme? Well, how about if the symptoms people attribute to Bb infection is not caused by Bb, but is just a label applied to a diverse set of unexplained symptoms by patients fixated on an unproven etiology?

            My opinion will change when the scientific evidence supports your contention. And admitting Lyme is under-reported doesn’t mean “CLD” is caused by Lyme/Bb.

        2. vadaisy says:

          ever had chronic Lyme disease?

          Interesting question. If it is as alleged, chronic and never goes away, how could one have “had” it? Though the title of this article uses the term “chronic Lyme disease”, it is really about chronic multiple infections.

          How many people have “chronic” Rocky Mountain Spotted Fever? What about “chronic” Babesia? Is that like “chronic” Malaria? Bill Gates might have a few choice words to say about that one.

          1. Pam says:

            Your answer only proves my point – you don’t have a clue about this disease. One can have chronic Lyme and have all symptoms go into remission. The bacteria remains alive and well in the brain -and possibly other organs – but, had you done your research, you would already know this. So you either didn’t do your research or you did and refuse to acknowledge the facts. Either way it’s deplorable behavior.

          2. Pam says:

            Oh, and not that you would believe me anyway, but since you can’t do your own research, let me explain – any infection can be chronic. I had chronic Lyme, Chronic Bartonella, Chronic Babesia, Chronic EBV, Chronic Ehrlichia Chronic Rocky Mountain Fever and more. If you don’t believe those things exist, then it only shows how poorly you can research, not that I’m claiming something that’s not in existence.

            There is also such a thing as being asymptomatic and still having the bacteria very much alive in your body, ready to start it’s destructive ways as soon as the conditions are right. Ever heard of cancer? that’s the way it works too. It’s already in your body, it’s just waiting for the right conditions to occur so that it can begin it’s outward development. Symptoms don’t start the moment that the cancer begins, the cancer can grow for years without being detected.

            Oh and by the way, thanks for asking, yes, I am symptom free right now, although I do live with permanent damage due to having had these diseases for so long without the proper treatment.

            Those the have it, get it, those that don’t, can’t seem to figure out how it started.

      2. Dama Lewis says:

        To be fair, the author goes way beyond addressing that issue also.

    2. weing says:

      Could you tell us what the UNSCIENTIFIC facts are?

      1. Pam says:

        Sure! Have a look yourself: IDSA Lyme Disease Guidelines, since they have a lock on that:
        http://www.idsociety.org/uploadedFiles/IDSA/Guidelines-Patient_Care/PDF_Library/Lyme%20Disease.pdf

        1. weing says:

          So you are the arbiter of science? Nice to know. I looked at the data and I think it’s the other way around. The kung fu of the IDSA is much stronger than your’s.

          1. “So you are the arbiter of science?”

            Well…*I* didn’t vote for her. :)

          2. whencarsfly says:

            I nominate Jonathan Graham to be acting arbiter of science…

          3. Pam says:

            No need to have a “arbiter” of science when it can speak for itself. Why are you so afraid to spend the time to look things up for yourself rather than only relying on the opinions of others?

          4. “I nominate Jonathan Graham to be acting arbiter of science…”

            Sadly I must decline. It conflicts with my position on the “Math Police”.

          5. whencarsfly says:

            @JG – That actually WAS a good one…touche’ :)

    3. DrDuran says:

      so you’re saying that a respected doctor with expertise in infectious disease has no business writing an article about a disease because they have not had that disease?

      that’s a really, really stupid position to hold. If only people who have had diseases were allowed to write about them then we’d still be fighting small pox and endemic plague like the dark ages.

      1. Pam says:

        You so completely missed the point! If only those that have a stake in how patients are treated and with what write the articles, the real science won’t be available. I have researched this for many, many years, and I’ve found the scientific evidence that IDSA puts out and it’s severely lacking.

        What does the Infectious Disease Society have to gain by not admitting their lack of evidence and insistence that their guidelines be followed and are the only ones to follow? Saving face. That’s huge if we are being honest, and if we aren’t being honest, well, what’s the point?

        If doctors refuse to listen to their patients, what’s the point of having them?

    4. WilliamLawrenceUtridge says:

      I am not an expert, which is why I prefer to rely on them instead. The question I like to ask is – why haven’t the experts been convinced?

      Also, Dr. Hall didn’t write an original piece, she basically summarized, for lay people, what the actual experts said. Twice.

      1. whencarsfly says:

        Experts have been convinced of the best treatment based on the best available evidence to treat patient’s who are currently suffering from Chronic Lyme Disease. Perhaps “THE” experts you choose to believe have not done the same…rock on then. The evidence counter to your BELIEFS exist in abundance, you and THE experts just choose to ignore it.

  36. whencarsfly says:

    Here is a pretty good summary of the IDSA “guidelines” that were released in 2010. For those of you who are apparently unaware of the existence of Chronic Lyme Disease. You can call it STARI, if it makes you feel better but it’s exactly the same thing for PRACTICAL purposes.

    Here’s a quote to whet your appetite.This is hard facts, not feelings or allegations of wrongdoings it is an analysis of findings. READ IT and respond, don’t respond based on what you are being told. Allegations of wrongdoing on the part of doctors using the best available treatment for Chronic Lyme Disease are not finding of guilt.

    The guidelines are “recommendations” not treatment protocol necessarily based on a scientifically deduced best practice.

    It’s kind of long and full of relevant FACTS and FINDINGS, so get ready to spend some time on it. Here is a quote to get you started:

    “Even though there are “more than 19,000 scientific studies on tick-borne
    diseases” that suggest chronic Lyme disease exists,90 doctors and researchers who
    follow the IDSA guidelines dismiss the notion that a Lyme infection can persist after
    a thirty-day dose of oral antibiotics and condemn the use of long-term antibiotics,91
    claiming they are useless and potentially harmful.”

    Read and LEARN boys and girls…

    http://www.law.gonzaga.edu/law-review/files/2011/01/Asher.pdf

    1. So I have to read a 2011 law journal article?! Law is cute and all but it’s designed around a standard of evidence that is necessarily inferior to science.

      There could be 2,000,000 studies that suggest something and the suggestion can still be not well supported. So like we tell everyone else who posts big shopping lists of articles. Pick out the articles which represent the strongest evidence and post cites here.

      1. whencarsfly says:

        @ WLU, again I’m confused by your standards of what is acceptable as evidence.

        Here is an example of an allegation that is apparently acceptable in this *ahem* “argument” if you are on the side of SBM…@VADAISY said: “As investigations into the alleged fraudulent or negligent activities of certain practitioners becomes apparent, the occurrences of “chronic Lyme disease” proliferate in their support and defense.on this blog.”

        Am I to understand correctly then that some vague “investigations into the alleged fraudulent or negligent activities of certain practitioners” trumps actual findings based on evidence? Findings of which do directly apply to this discussion. Am I to assume then that you have completely read and understand that there was found to be a conflict of interest with those who were writing the guidelines based on the best *cough cough* available scientific evidence.

        Understand that and you will understand the core driving force in the “post lyme”, Chronic Lyme, STARI conversation. Ya think maybe your science is being directed by something more than simply a search for a cause and a cure?

        In a step that the British Medical Journal deemed “unusual,” the IDSA included in its Lyme guidelines a statement calling them “voluntary” with “the ultimate determination of their application to be made by the physician in light of each patient’s individual circumstances.” In fact, United Healthcare, Health Net, Blue Cross of California, Kaiser Foundation Health Plan and other insurers have used the guidelines as justification to deny reimbursement for long-term antibiotic treatment.

        1. “@ WLU, again I’m confused by your standards of what is acceptable as evidence.”

          You’re definitely confused, as I’m not WLU.

          The point I made was that you have posted a law journal article from which you pulled a reference to some number of studies which someone (quite possibly unqualified to make the assertion) claims “suggest” something does not necessarily outweigh the evidence that is against CLD.

    2. weing says:

      You want us to treat based on lawyer’s recommendations. Attorneys know as much about medicine as I know about law.

    3. Pam says:

      Tell that to the doctors that have tried treating these diseases only to loose their license or their practice or both. Many have to have a “monitor” simply because they are trying to treat the people that the CDC and the IDSA don’t want to admit even exist. Take a look at Dr. Edwin Masters, who in his writings admits that he was willing to call it anything he had to in order to get his patients treatment. Unless you have been on the front lines of this disease, you are being fed lies. Remember what the people who had AIDS went through to get recognition? Well, even some of those who were there for that fight are now saying that Lyme disease is going through the exact same thing to get recognition.

      1. whencarsfly says:

        As Dr. Master’s famously said “absence of proof is not proof of absence”. It would serve anyone here well who is content with a “post lyme non-diagnosis” to heed his words if you are to ultimately only be satisfied by the truth verified by evidence. Much of the scientific proof is already available but does not agree with what you “believe” to be the truth,

        1. @carsthatfly – The problem is that the studies that have been done show that long term antibiotics are do not offer benefit over placebo. That is not absence of evidence. That is evidence of absence.

          You can not prove a negative, but medical interventions should have evidence of a benefit that exceeds the known risks. There is no compelling evidence of benefit.

          1. Whencarsfly says:

            @mtr I am positive that you are mistaken.

          2. “You can not prove a negative,”

            Someone once said that there exists no a, b, and c which satisfies a^n + b^n = c^n for any non-trivial integer value. I heard someone even proved it, only took a few hundred years too.

            Generally speaking what people mean by your statement is “You can not prove a universal existential negative” however as I just mentioned above, even those are provable. That said universal, existential negatives are quite often difficult or not feasible to prove..

          3. “@mtr I am positive that you are mistaken.”

            I’m positive I don’t believe you after reading about the record of the lab you recommended to me. Also your support of people like the “Dr” who obviously didn’t care or understand basic rheumatology labs. You remember, the one who attempted to convince me that my auto-immune disease* was actually a tick-borne multi-bacteria illness.

            Oh yeah, that’s right. You don’t believe I actually have an illness, because it doesn’t fit with your story line. Why would I give any credence to what you are positive of or not?

          4. JG “Generally speaking what people mean by your statement is “You can not prove a universal existential negative” however as I just mentioned above, even those are provable. That said universal, existential negatives are quite often difficult or not feasible to prove..”

            No, No – JG My dad was a genius physicist with 26 patents in his name and he told me you can’t prove a negative and he also told me he was right 99.9% of the time, so there you go.*

            I’ll just say that if I’m sick I want my doctor following the most likely causes (while appropriately ruling out dangerous alternative) I don’t want them treating me with chemotherapy for a headache because “you can’t prove chemotherapy doesn’t work for headaches.” Even more so after a (hypothetical) RCT shows that the benefit of chemotherapy for headaches is the same as placebo, with worse side effects.

            *This is kinda irrelevant, I just can’t help pinging on my Dad, even posthumously.

          5. ‘I don’t want them treating me with chemotherapy for a headache because “you can’t prove chemotherapy doesn’t work for headaches.”’

            Absolutely. I was simply indulging my pedanticism. If I were on the ball, I’d also have shown whencarsfly how absence of evidence *IS*, in some cases evidence of absence.

          6. windriven says:

            @flying cars

            ” I am positive that you are mistaken.”

            Well then pony up a citation.

          7. whencarsfly says:

            @ JG said “Absolutely. I was simply indulging my pedanticism. If I were on the ball, I’d also have shown whencarsfly how absence of evidence *IS*, in some cases evidence of absence.”

            Please indulge us, I’m sure it will finally resolve the question of whether anyone really has Chronic Lyme Disease once and for all…

          8. “Please indulge us”

            Essentially, that the probability of an expectation (E) and it’s complement (~E) have to be 1.

      2. vadaisy says:

        Which doctors “only” lost their license because they were appropriately treating a patient? Name them and we’ll discuss the “lies” you allege we’ve been fed about them.

        1. whencarsfly says:

          @vadaisy – Look the names up yourself (Google or Bing should work). Doctors have lost their licenses for effectively treating patients outside of the CDC guidelines. This was before the clarification was added to the guidelines that they are intended as suggestions (not as the only course of available treatment).

          It still hasn’t been satisfactorily answered (and I doubt it will) why an allegation is a finding of guilt in your analysis. yet an actual finding of conflict of interest could not possibly affect the guidelines. I sense a hint of bias here.

          The truth is slowly coming out, keep your head in the sand all you like, doesn’t bother me a bit.

          1. Maybe you should be more specific. When I Google it, I see doctors who were treating CLD lost their licenses over medicare fraud and tax evasion.

          2. Pam says:

            Agreed Whencarsfly! The only problem is that their bias isn’t just a hint.
            As you said, “the truth is slowly coming out….” That’s why there’s an all out attack on those who truly do suffer from these diseases – they’re scared because of the scope of the truth and what it means to millions of people world wide.
            Let’s not forget that these people are the ones supporting those who have claimed that just because Lyme disease has been detected in one state that there is no way it can cross state lines and others in the bordering states could have this same disease.

            How’s that for crazy?

          3. vadaisy says:

            Neither Google or Bing yield any mention of “LLMDs” losing their license solely due to the reasonable prescription of antibiotics, within or outside of the guidelines. What both Google and Bing do yield are significant conflicts of interest amongst the Lyme disease associations and society, specialty infusion companies, specialty testing laboratories and other intimately associated “Lyme-literate” entities. I don’t see how these more direct conflicts of interest are any different from those indirect ones mentioned of the IDSA. The rife conflicts throughout the “Lyme-literate” community would certainly would make for some intriguing investigative journalism. I ask again, which “LLMDs” lost their license solely for the reasonable prescribing of antibiotics as I find none to mention?

          4. whencarsfly says:

            @vadaisy – I’m not sure why you are so insistent on getting those names but you can find them for yourself. Those names have no bearing on the discussion of whether anyone has Chronic Lyme Disease, particularly if they no longer practice.

    4. vadaisy says:

      While you’re edjukateing everyone, don’t forget to mention the “Fry bug”.

      1. Pam says:

        Do you have trouble understanding that there are different strains of the same bacteria? Are you sure you were paying attention in High School?

        1. vadaisy says:

          While you’re edjukateing everyone, don’t forget to mention the “Fry bug”.

          Do you have trouble understanding that there are different strains of the same bacteria? Are you sure you were paying attention in High School?

          Oh, I see. You’re saying that although Borrelia burgdorferi is a bacterium, there are different strains which have morphed into chronic protozoan infections. Our high schools taught us that there are differences between bacteria, virus, and protozoa. It’s unfortunate that yours taught you that they are all the same. A declining quality of public education could be adding to the chronic confusion surrounding this controversy.

          On the other hand, if you look at some of the claims being made, you will see that the “Fry bug” has been found in patients with Morgellon’s disease.

          FL1953 is a new, unique protozoan organism that is found in people with CFS, Fibromyalgia, Multiple Sclerosis, ALS, and Rheumatoid Arthritis.

          People with Morgellon’s also have evidence of the organism. In Morgellon’s, Dr. Fry talked about this new protozoan possibly suppressing the immune system such that a fungal/mycelial condition then develops leading to the symptoms of Morgellons.

          1. vadaisy says:

            All joking aside, you can read online in the support forums about ALS patients who believe in these claims made by the good Dr. Fry. Some of these ALS patients are spending their last dollars and all their hope chasing these dubious “bugs” being discovered by even more dubious ‘doctors’. It is sickening to read about ALS patients being conned out of their money and wasting their precious time on such unsupported claims.

          2. Pam says:

            So since you can’t attack me for one thing you feel it’s necessary to confuse the science? Since when can the same bacteria not have different strains? I would ask you what High School you went to and are you positive that it was truly accredited?

            And for your information, since it’s obvious that you choose to not do your own research, Babesia is a protozoa that is frequently, although not exclusively, passed along with Lyme, Bartonella and others.

          3. vadaisy says:

            There are tests for Babesia and it is not treated with chronic antibiotics or chronic anything. You do not need to share the names of the experts you keep mentioning. However, in not mentioning them, there is no way for anyone to verify their credentials. A quick search of expert “LLMDs” reveals that many of them are frauds and have been convicted as such, but I suppose you write that off as being part of the Big Conspiracy.

  37. haleybrooke says:

    It’s not worth an argument. Although this is highly upsetting, that people could be so cruel. But sadly as a chronic Lyme/babesia/bartonella survivor, I’m really used of it. If you personally don’t believe it exists, that’s fine but when you bash us this loud, I hope you know it only helps us fight harder to show you non believers that this is real, it’s painful, and we deserve better. Cld and Co infections are in every county,city,state, and country.

    But when you don’t believe, I think you should volunteer yourself to research, we need more and since you don’t believe, there is obviously nothing to fear, right? Right.

    Sincerely, 18 year old Cld and Co infection survivor and advocate :)

    1. weing says:

      Sounds like the epitaph “To my doctor. See? I told you I really was sick.”

      1. whencarsfly says:

        @weing – I’d stick to your form of “science”, your career in comedy appears to be doomed before it even started…

    2. My MIL had a painful swelling under her knee that was red and warm to touch. She “knew” that it was her arthritis, partly because her doctor had seen it and not remarked. I suppose she could have “known” it was CLD, because she had been diagnosed (based on the target rash, not blood testing) and treated for Lyme disease several months before.

      Is it cruel and unsympathetic of me to say no, you are wrong. You need to go to urgent care and get that checked out? It is NOT cruel to questions someone’s diagnoses when you have good reason to believe it is an inaccurate diagnoses. It is a sign of caring.

      The swelling was from a blood clot, which is very dangerous to ignore. They adjusted her blood thinners and she is doing much better now. Just because my MIL suffered from the swelling, doesn’t mean she was an expert on her condition…anymore than her owning a car makes her an expert mechanic.

      1. whencarsfly says:

        @mtr – Did haleybrooke say that medical professionals didn’t check for a blood clot, or any other cause of her symptoms? You are making an assumption about what led her to a CLD dx.

        1. I am making no assumptions about Haleybrooke’s past. I am saying that questioning someone’s diagnoses is not inherently cruel, when your questioning is based on concern that the person isn’t getting the appropriate care.

          As an aside I know, personally, at least four (oops, five, including myself) people who were ultimately found to have physiological treatable medical conditions who’s symptoms were dismissed, misdiagnosed or underestimated by doctors for years. That actually out numbers the people I know who have any sort of ongoing psychosomatic based diagnoses.

          So no, I don’t assume that medicine can provide an acurate rule out diagnoses in any period of time that feels reasonable to a patient. The reasons for this varies, from the fact that it sometimes takes time for a disease to “show itself” to the fact that some doctors miss things for various reasons, to the fact that medical care is an overly confusing process that people sometimes get lost in.

          But just because you don’t have an accurate diagnoses doesn’t mean that a diagnoses distingued by it’s all emcompassing symptom profile, high false positve testing and disproven treatment plan will do.

          *Esophageal cancer, Meningioma, Thyroid Cancer, Morton’s Neuroma**, Lactose Intolerences**. Luckily, the epithet that weing suggested only applies in the first case.

          **What doctor doesn’t suspect Morton’s Neuroma or Lactose Intolerance over the course of many visits over years? I don’t know, I think some doctors are reassurance mills. I doubt they’re common, but…

          1. whencarsfly says:

            @MTR – Ok, wait…so now personal experience is relevant to this discussion because it’s YOUR personal experience? Again, I’m confused…sorry.

    3. vadaisy says:

      @haleybrooke – What diagnostic criteria and treatment protocols were used for your “chronic Lyme/babesia/bartonella”? What differential diagnoses were ruled out in your case?

  38. JG “You’re definitely confused, as I’m not WLU.”
    Actually, your voices are kinda similar…either it’s because you’re both skeptical Canadians or you’re soul mates. :)

    Joking, joking.

    1. Is WLU Canadian? Is that why he’s so level headed? :)

      1. Hah! You Canadians pretend you are so level-headed and placid, then you go online and act like a bunch of rabble rousers. ;)

        1. Well we certainly can’t be rowdy *in* Canada. We might get shusshed or worse patiently tolerated. Patient tolerance is a major export of Canada.

        2. whencarsfly says:

          Isn’t that cute…

  39. JG “Absolutely. I was simply indulging my pedanticism”

    Oh, you should do that on one of David Gorski’s posts, he loves pedanticism.

    (evil chuckle)

  40. haleybrooke says:

    Ever since i was a young child i had medical issues. heart problems, stomach problems, feet, head, eyes, back, you name it, ive probably had it and went to a SPECIFIC doctor whom treated it. Which all couldnt find anything wrong. When i was 14 i became bedridden, which ended up lasting 2 years, my docotor had done EVERY blood test, and i literally mean it. my lyme came back positive and he told me to get to good doctor asap, because this is serious and he cant help me. luckily, my mom did just as he said and i got into, not one, but, two! LLMD’s. i did a rotation of oral antibiotics and if it werent that, i defintley would not be here today. I went through so much more than you can ever imagine.

    Did you know that Chronic lyme is called the “GREAT IMATATOR” It mimics over 300 diseases, including Lymphomia cancer.

    1. vadaisy says:

      Chronic lyme … mimics over 300 diseases, including Lymphomia cancer.

      </em.

      No, it does not. It’s sad to hear of such a young person falling into this trap of misinformation. I hope you learn more as you age.

    2. vadaisy says:

      @Haley, What was the name of the Lyme disease test used to make your diagnosis? Would you share the type or name of the test, as well as the name of the lab and the test results?

      1. Katherine Marie says:

        Before the end of 2008 I was a healthy fit 23 year old young mom. I had been a Varsity HS Basketball, Volleyball, and Track & Field athlete and an athlete since grade school. I was a highly functioning young adult working constantly in a demanding field. Dec. 2008, I began to become sick and it seemed to come out of nowhere. I would have bouts of vomiting and diarrhea that at 1st seemed like bad food poisoning except it was happening every 2 weeks and last up to 12 hours at a time. I had severe headaches, body aches, and colitis like symptoms. I immediately went to see a doctor and they started to do testing. From Dec-March it seemed I had been tested for every possible illness and disease and everything came back negative. My parents,my dad a trauma surgeon who had spoken to the Infectious disease doctor at his hospital, mentioned the possibility of Lyme in March 2009, but the doctor said my symptoms didn’t match Lyme and “I didn’t have Lyme”. By the next month I had gone from 140 lb. to just over a 100 lb. and could barely walk. Finally, in August 2009, when it seemed they had exhausted every blood test, mdi, cat-scan, ultrasound they tested me for Lyme and I came back positive. I was put on a 30 day doxycycline regimen and then retested a few weeks later. I still tested positive and was still symptomatic. The doctor told me that sometimes you get false positive results and said I would feel better soon, but I didn’t I was getting worse. I did research to see what my options were and stumbled across info just like this website that frowned on intravenous antibiotic treatment. I was afraid to try it and so suffered on until Feb. 2010 where it had just gotten to the point my body was literally going to deteriorate away. I finally decided to meet with the Infectious Disease doctor my dad had mentioned and right away was put on the intravenous antibiotic rocephin and after just 30 days, the constant vomiting and diarrhea stopped. The headaches and body aches less severe and less often, I was able to start returning to normal life-school, work, taking care of my children. Now, the science at this time might not be able to explain this, but to me common sense does. I do want to mention that the doctor I chose was connected with a credible medical institution. Dr. Stokes at St. Francis Medical Center in Poughkeepsie, NY and that she takes medical insurance. Dr. Horowitz was an option that I also had as Hyde Park is very close, but I chose not to go with because he charges a lot of money, recommends much longer treatment, doesn’t take insurance, and is not affiliated with any credible medical institution. I also want to say that I am not completely cured today and still have symptoms, but the rocephin treatment changed my situation from dire to having to tolerate it. I was starting to show symptoms just a few months ago, I still test positive for Lyme, and I still deal with it, but I wanted to share my story because I feel that there is misinformation on both sides of this argument and I believe it it because there is still a lot unknown about the disease and the science on it is still changing and evolving constantly. I only hope this helps a sufferer that was as lost and confused with all this negative info on the topic find their way to some relief and normalcy in their life.

  41. carsthatfly “@MTR – Ok, wait…so now personal experience is relevant to this discussion because it’s YOUR personal experience? Again, I’m confused…sorry.”

    It seems you are confused, because I never have said personal experience isn’t relevant to this discussion. I only said having a symptoms doesn’t mean you have the expertise to diagnose that symptom.

    I have no problem with people’s personal experiences and I don’t doubt the reality of their symptoms. Unlike you, who doubted the reality of my symptoms.

  42. Pam says:

    Here is the last comment for me, as I’m done trying to describe the elephant in the room to blind people – it’s more than obvious that all you are wishing to do here is to pass out more misinformation. Maybe when the truth comes out, you will be brave enough to openly admit you were wrong – because the truth will come out….just as it did with AIDS when the most of the world had all the wrong information about this disease, and then the truth came out.

    But are you brave enough?

    1. vadaisy says:

      But are you brave enough?

      What’s that saying – brains before beauty? What is important is that we have enough integrity not to mislead and take every last dime from ill and desperate patients who are unfortunately willing to grasp at every straw, no matter what poison it may contain, in oftentimes vain attempts to save their lives or at least make them feel a bit better for the moment.

    2. WilliamLawrenceUtridge says:

      If the peer reviewed literature begins to accumulate to support your point, I will concede that you may have a point. If the expert recommendations change to support your point, I will state outright that you were correct. I will still say that your recommendations were premature given the state of the scientific literature, and that your efforts would have been better suited to supporting scientific research than direct-to-consumer and direct-to-politician advocacy. It would have helped more people, more quickly, and you would have wasted considerable time.

      The comparison with AIDS is totally wrong – it was quickly recognized that there was a novel infectious agent, it was (relatively) quickly determined what the agent was, and it was (relatively) quickly turned into a lifestyle condition rather than a death sentence. And underpinning each stage was empirical evidence that could be verified by everybody, not merely HIV-Literate MDs. You CLD promoters love to wave AIDS about as if it proved your point, completely missing the role that objective evidence played in the entire process. You don’t have any, preferring instead to rely on assertions, fallacious reasoning, appeals to pity and paranoid conspiracy theories.

      1. whencarsfly says:

        @WTU: So how many peer reviewed studies need to be stacked up to appease your insatiable appetite for *cough* proof?

        Your are sorely mistaken about the AIDS fight. It was activists who fought for recognition when it was first ignored by the medical community..Good grief.

        1. “It was activists who fought for recognition when it was first ignored by the medical community”

          Citation please.

          1. whencarsfly says:

            Google it and find and discover for yourself my friend, You wouldn’t read anything I cited here anyway.

          2. “Google it and find and discover for yourself my friend”

            Which I did before I even posted. CDC recognized the disease in 1981, with the first US patient in 1969 and only a few between there and 1980. No evidence whatsoever of some group of activists being the primary reason for the recognition of the disease.

            “You wouldn’t read anything I cited here anyway.”

            Entirely unfair assessment. I read the posted article on antibiotic resistance and even some of the law journal article until it was clear that it wasn’t getting to much of a point very soon. I’ve even directly requested that you post studies which you think are compelling from the 19,000 that you believe form a significant body of evidence.

        2. weing says:

          “Your are sorely mistaken about the AIDS fight. It was activists who fought for recognition when it was first ignored by the medical community.”
          You are out of your freaking mind. I remember seeing the first AIDS patients as an intern. They were mostly young people, going into respiratory failure right in front of you. Something was destroying their immune system. It was scary. There was no way we were going to ignore these patients.

          1. weing “You are out of your freaking mind. I remember seeing the first AIDS patients as an intern. They were mostly young people, going into respiratory failure right in front of you. Something was destroying their immune system. It was scary. There was no way we were going to ignore these patients.”

            Yeah – A family member was a hospital nurse at that time and I distinctly remember her talking about this strange illness that was killing men and and how scary it was, way before there was any media coverage.

            There were alot of mistakes made in handling AIDS (Insurers trying to get out of paying, the public treating at risk people or AIDS patients like lepers even after the mechanisism for transmission was well know, denial about prevention methods and people basically not wanting to fund research because of homophobia, to name a few) But the medical community noticed, early that’s for sure.

            Even if you don’t like the medically community. Do you really think they are going to be blaise about a mysterious deadly illness that may be contagious well before the patient is symptomatic? That’s not even feasible, but less supportable by fact.

          2. vadaisy says:

            “Your are sorely mistaken about the AIDS fight. It was activists who fought for recognition when it was first ignored by the medical community.”

            You are out of your freaking mind.

            The AIDS ACT-UP mentions are coming from ILADS’ “LLMD” Dr. Kenneth Liegner and his cries for public displays of activism. He compares “chronic” Lyme disease to a modern Tuskegee experiment. Some have dubbed “Chronic” Lyme disease as Tuskegee II. The following excerpts are from Dr. Liegner’s speech at an activist rally, but he has been using the same lines, same research findings, and same citations for well over a decade.

            Remember A.I.D.S.? Persons with H.I.V. were abused, despised and neglected until ACT-UP-activists threw blood on the steps of St. Patrick’s Cathedral.

            Only then did things begin to change. Because of that activism, $2 billion/year has been expended on A.I.D.S. research and treatment over the past several decades and real progress has been made.

            Recently, in New York State, six physicians who care for persons with chronic Lyme disease have been simultaneously under investigation by the OPMC. What message does this send to other physicians? What implications does this have for persons with chronic Lyme disease to access proper care within the State of New York and elsewhere?

            Dr. Liegner assumes he knows why the physicians are under investigation, and presumably he was one of those investigated. He has come under investigation in the past. He and others claim they are being “persecuted” by the medical boards much like a religious war. He seems to think his practice is impeccable. They are fighting for the right to define “chronic Lyme disease” however they wish and not limit it to an infection with Bb or any established or agreed upon set of symptoms. This is the way the Senate Bill is presently written. They want to be able to “experiment” on patients without fear of repercussions from their peers, medical boards or malpractice suits. They want their experiments covered by healthcare insurance. Basically, they do not want to be held accountable for their actions, their experiments gone wrong.

            Dr. Liegner calls on Lyme disease patients to be “pro-active, militant and resolute” in demanding care.

        3. vadaisy on the AIDS / CLD comparison “. They are fighting for the right to define “chronic Lyme disease” however they wish and not limit it to an infection with Bb or any established or agreed upon set of symptoms. ”

          Imagine if researcher had decided to dramatically expand the diagnostic criteria for AID/HIV to include: People with a positive on a lab test with a high false positive rate or a positive test for other viruses (to be chosen by individual doctors), Anyone with some of the symptoms of AIDS (Fever, Chills, Rash, Night sweats, Muscle aches, Sore throat, Fatigue, Swollen lymph nodes, Ulcers in the mouth), regardless of risk of exposure to the virus.*

          Would we be anywhere near where we are today in preventing and treating the disease?

          *Oh God! This sentence is a mess and I don’t know how to make it right. I hope it made some sense.

  43. Nadine St-Onge says:

    We are millions around the world with this horrific disease and you say we are all crazy!!!! I have no words to describe what I think of you and your article.

    1. Harriet Hall says:

      I did not say anyone was crazy. Please read more carefully and respond to what I actually wrote rather than to what you want to imagine I wrote. Especially re-read the last two sentences of the article.

    2. vadaisy says:

      you say we are all crazy!!!!

      Dr. Hall acknowledged that you are suffering and deserve compassion along with the best treatments science-based medicine can offer. No one called you “crazy”.

      They are suffering, and they deserve our compassion and the best that science-based medicine has to offer, not bogus treatments by charlatans or well-meaning but misguided LLMDs.

      1. whencarsfly says:

        Is Dr. Hall the designated “expert” for this conversation? I’m unclear the criteria for an expert and someone who is an expert in their field but is not considered an expert in this discussion because he/she understands that patients are sick and dying from the effects of Chronic Lyme Disease. Do I have that right?

        1. weing says:

          “I’m unclear the criteria for an expert and someone who is an expert in their field but is not considered an expert in this discussion because he/she understands that patients are sick and dying from the effects of Chronic Lyme Disease.”

          I can tell that you don’t know what the criteria for an expert are. Why don’t you go and study and find out what an expert is? What the criteria are? How can you verify that someone is an expert? Then come back and tell us. You could also find out what the mortality of so-called CLD is? I suggest checking with the CDC and MMWR. How would you separate the mortality due to CLD from the mortality due to adverse reaction to the treatments being foisted on them.

          Am I the only one who sees similarity between some of these CLD cases and Munchausen syndrome? One of the commenters left me with the distinct suspicion for Munchausen by proxy.

          1. whencarsfly says:

            @weing said: “I can tell that you don’t know what the criteria for an expert are.” Please enlighten me, I’m not smart enough to look it up.

            Ah yes, we pull out the infamous MBP dx…a favorite. @weing said: “One of the commenters left me with the distinct suspicion for Munchausen by proxy”. So you can dx MBP simply by reading comments…not very scientific.

          2. weing says:

            Learn to read. I didn’t diagnose. I wrote suspicion. It’s in the differential.
            I can’t enlighten you. You have to do that yourself. You are smart enough. Don’t let anyone tell you otherwise. I have faith in you. So, go out and learn. Not just look up. Learn. You can do it.

          3. weing says:

            Oh. BTW. Since it’s obvious that you don’t know how medicine works. I spend most of my time listening to patients and formulating a differential from what they tell me. After I finish examining them, I have the diagnosis about 90% of the time. Other studies and consultations help with the rest. So, it’s become a habit, and when I read I also come up with hypotheses as to what’s going on.

          4. lilady says:

            That would be straight up Munchausen Syndrome, Weing. Unless…a poster has been inflicting treatment for chronic Lyme disease on a child:

            http://my.clevelandclinic.org/disorders/factitious_disorders/hic_munchausen_syndrome.aspx

          5. whencarsfly says:

            @wieng: “After I finish examining them, I have the diagnosis about 90% of the time” Well pat yourself on the back, you are an amazing diagnostician I can just tell. Having “the” diagnosis is not the same as having “the correct” diagnosis…

        2. weing says:

          “Well pat yourself on the back, you are an amazing diagnostician I can just tell.”

          Why the hell should I? It’s what any good internist does and is expected to do.

          1. whencarsfly says:

            @weing: I was being facetious…you already did…”I have the diagnosis about 90% of the time.”

          2. weing says:

            “@weing: I was being facetious”
            Dang it. And I thought you were being snarky.

        3. @wieng: “After I finish examining them, I have the diagnosis about 90% of the time”
          carsfhatfly “Well pat yourself on the back, you are an amazing diagnostician I can just tell.”

          Actually, I believe weing is in some sort of general practice (sorry, don’t remember). So the majority of people he sees probably have something common and/or something pretty well documented by medicine. They are horses, rather than zebras. It’s like saying you can identify 90% of the animals correctly when vacation through your state. Of course you still have to be observant and know your animals…no mistaking a fox for a coyote at a distance. But I don’t think it’s any sort of outlandish claim. Sound pretty realistic to me.

        4. WilliamLawrenceUtridge says:

          Consistently missed in comments like this, is that Dr. Hall did not cite or conduct original research – she points to and interprets the expert consensus opinions on Lyme disease and CLD, which consistently fail to find support for assertions about it. You don’t have to discredit Dr. Hall to discredit the article – you have to discredit the journal articles she cites.

    3. WilliamLawrenceUtridge says:

      Not “crazy” but definitely attributing your symptoms to an etiology with a certainty that is grossly disproportionate to the scientific support. That’s the problem – you claim to know, but can’t convince anyone who isn’t already a believer.

  44. tracy weber says:

    So, if CLD doesn’t exist, what is it that you feel people are left with post-treatment, and how exactly do you propose it should be treated?

    1. weing says:

      “So, if CLD doesn’t exist, what is it that you feel people are left with post-treatment, and how exactly do you propose it should be treated?”
      We are not sure. It could be residua of the illness. As happens when you end up with a seizure disorder after meningitis or encephalitis. Some sort of autoimmune disorder.
      Treatment is an active area of research. At the present, we treat the symptoms the patients have. We know that somethings, like antibiotics, don’t work.

      1. vadaisy says:

        At the present, we treat the symptoms the patients have. We know that somethings, like antibiotics, don’t work.

        @weing, many doctors seem to have a problem with treating the continuing symptoms that appear to be autoimmune in nature with anything other than antidepressants and narcotic pain medications. Some patients with autoimmune symptoms and arthritis might benefit from medications used to treat RA, yet because they clearly do not have RA, they are denied such treatments. Many patients are left without any treatments and seek relief on their own, and as such, many wind up taking a bunch of bogus and oftentimes harmful therapies.

        1. weing says:

          @vadaisy,
          That’s why I feel such patients, if they don’t respond to treatment, should be referred to an academic center. Once they have a load of such patients, they have, or at least should have, the resources to find ways of helping these patients. Unfortunately patients doctor shop, and are vulnerable to the unscrupulous or self-deluded that promise them a cure they don’t have. How is a patient to know?

          1. vadaisy says:

            That’s why I feel such patients, if they don’t respond to treatment, should be referred to an academic center.

            @weing, In theory this is an excellent idea, and in reality it should also be the best resource for the patient. Unfortunately academic centers have the reputation for routing patients around and around to all sorts of specialists and many expensive tests, yet when they can not determine what is causing the symptoms, they too do not offer any useful or substantial intervention. There is generally no one coordinating the care between the specialists and no one attempting to piece together the patients medical findings amongst the specialists. In complex cases, those much needed investigative skills exceed those of average primary care physician. Some diagnoses require a multidisciplinary approach and do not fall into one specific specialist. When there is little to no coordination of care and discussion amongst the specialists, even common and treatable diagnoses might be overlooked.

            It’s the same ‘ol story for most patients, wherever they go. They are indeed safer in most cases at an academic center, rather than subjecting themselves to uncontrolled and expensive experiments which are not covered by insurance and have no one other than the “LLMD” overseeing their own experimental interventions. In those cases, they’re like lab rats in a test lab housed in a back room somewhere. Who knows what is happening to some of these patients. The “LLMDs” certainly don’t talk about their failures.

          2. weing says:

            @vadaisy,
            Our system is fragmented. I would hope an academic center would have someone on staff notice that these patients are not improving and channel the resources into addressing their needs. That’s probably Polyannish on my part. There is less and less funding available as it’s gone for spending on missiles for useless wars and for supporting the stratospheric incomes of the titans of finance and their cronies in the revolving door between Wall St and Washington.

        2. vadaisy “Who knows what is happening to some of these patients. The “LLMDs” certainly don’t talk about their failures.”

          This is somewhat similar to the unethical practices of the burzynski cancer clinic.

          Have you seen the Other Burzynski Patient website?http://theotherburzynskipatientgroup.wordpress.com

          Perhaps a similar approach would be helpful in revealing unethical LLMD practices.

          1. vadaisy says:

            @MTR, this blogger is the closest thing available to the Other Burzynski Patient website as far as Lyme disease patients go. Their site is a wealth of information about the core participants of the Lyme disease controversy, nothing pretty about it. In fact, another “LLMD” just had his license suspended in Illinois and is under probation in Iowa. There was a few news stories written about him a while back.

  45. I dislike the diagnoses of Munchausen Syndrome by Proxy. I think this is a thoughtful piece on the diagnoses.
    http://www.jaapl.org/content/34/1/90.full

    Also check out the history of the diagnoses and Dr. Meadows in England on Wikipedia.

    I do agree that haleybrook’s comments did give me the impression that her parents lacked all the abilities necessary to manage a child’s healthcare.

    1. weing says:

      @mtr,
      I have only diagnosed Munchausen’s once in over 30 years. It is quite rare from my perspective. I presume that by proxy is just as rare, if not less so. The issues raised in the link you provided are valid. One more reason I’m glad I’m not a pediatrician.

    1. WilliamLawrenceUtridge says:

      I’m not sure what comment you are trying to reply to, so I’ll just note that you are not quoting scientific literature, that’s a blog.

  46. MAIYYYYYZ says:

    Whoever wrote this article has issues.


    Lyme is a multi-systemic illness, and may affect every part of the body causing fatigue, stiff neck, headaches, light and sound sensitivity, tinnitus (ringing in the ears), anemia, dizziness, joint and muscle pain, brain fog, tingling, numbness and burning sensations of the extremities, memory and concentration problems, difficulties with sleep (both falling asleep and frequent awakening), chest pain and palpitations and/or psychiatric symptoms like depression and anxiety.

    That pretty much covers everyone.”

    Actually no, having multiple symptoms as listed above doesnt cover everyone. So if you think its normal to have a multi-systemic illness, maybe you should be the one going to the doctor.

    Or in your case, maybe you should just head straight to the psychiatrist since you passionately defend that infection-mediated chronic illness doesnt exist.

    Crazy dude. You are obviously only writing this to get a reaction and are clueless about infection and science in general.

    1. Chris says:

      Did you just call Dr. Harriet Hall a “dude”?

      Perhaps instead of lobbing insults at Dr. Hall, you might try providing some citations for your assertions. You can start by providing peer reviewed PubMed indexed studies that you feel are better than the ones she provided in the section subtitled ‘Criticism of “chronic Lyme disease”.’

    2. WilliamLawrenceUtridge says:

      Lyme disease exists. Chronic lyme disease as a vague set of symptoms dominated by fatigue and mental fuzziness (the primary complaints) doesn’t really seem to. But to really address your point, every single person will, at some point in their life, have a headache. Ditto for fatigue, joint pain, dizziness, tinnitus, memory problems, sleep issues, etc, that will cycle in and out of people’s lives and are mostly short-term irrelevancies unless you decide to hyperfocus on them and make them your identity. They are part of the package of being human, in particular a human that is aging.

      The problem is, the evidence for this infection-mediated chronic illness doesn’t exist. And as for your statement about Dr. Hall being clueless about infection and science in general, the first point is belied by the fact that infectious disease experts as cited by Dr. Hall are pretty much universal in thinking you are wrong and she is right. And the second point is rather obviously your issue since you cited no sources, criticized no arguments, and basically insisted that your opinion wins because…well you never really gave a reason. May I point out that insistence without evidence is essentially the opposite of science?

  47. MAIYYYYYZ says:

    First of all, I cannot believe I am wasting my time with this.

    William L., if you do not know the definition of a multi-systemic illness, I really cannot help you. But I can start you off by saying its many symptoms having to do with dysfunction of many systems simotaneously. The fact that the author also did not seem to understand this basic medical fact makes me think that she is completely clueless.

    Well my darlings who are so passionate about scientific evidence, must I do everything for you?

    Here are 73 articles, may of which are human trials that the honerable Dr. Hall must have missed:
    http://www.personalconsult.com/articles/LDPersist.pdf

    And another (yawn…)
    http://www.ncbi.nlm.nih.gov/pubmed/22922244

    And another…
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3256191/

    And in case the amazing and well read Dr. Hall would like me to review some for her, here is five:

    Borrelia burgdorferi detected by culture and PCR in clinical relapse of disseminated Lyme borreliosis concluded that “The treatment of Lyme borreliosis with appropriate antibiotics for even more than 3 months may not always eradicate the spirochete.”

    Comparison of oral cefixime and intravenous ceftriaxone followed by oral amoxicillin in disseminated Lyme borreliosis states “prolonged courses of antibiotics may be beneficial…since 90% of the patients showed excellent or good treatment responses.”

    In Treatment of late Lyme borreliosis, the study compared ceftriaxone followed by 100 days of oral antibiotics to 14 days of ceftriaxone alone, and in comparison to the prolonged antibiotics, the researchers concluded “short periods of treatment were generally not effective.”

    Tetracycline therapy for chronic Lyme Disease treated late Lyme disease with tetracycline for a mean of 4 months and concluded “these results support the use of longer courses of treatment in the management of patients with chronic Lyme disease.”

    One study titled Physician preferences in the diagnosis and treatment of Lyme disease in the Unites States sent questionnaires to physicians in Lyme disease endemic areas and compiled the results of seventy-eight responders. Fifty-seven percent of responders treated patients with late Lyme disease for 3 months or more. This survey documented significant differences between the CDC recommendations and actual practices. When the treatment recommendations are not being followed by over half of treating physicians, it indicates that the recommendations are likely not appropriate for current clinical use.

    Honestly I can only do so much and the rest depends on your IQ to figure out all by yourself.

    If my tone seems sarcastic, I am only matching that of the article and the many ignorant responses on here.

    1. WilliamLawrenceUtridge says:

      William L., if you do not know the definition of a multi-systemic illness, I really cannot help you. But I can start you off by saying its many symptoms having to do with dysfunction of many systems simotaneously. The fact that the author also did not seem to understand this basic medical fact makes me think that she is completely clueless.

      Why don’t genuine experts in infectious diseases and Lyme in particular, find this sort of information convincing? Sure, I may not be aware of the ins-and-outs of Lyme infection, but they are. That’s why the authors here consistently cite the scientific literature.

      Your citations are a mixture of animal studies (hypothesis-generating, not confirming in humans), and about acute Lyme disease. This post is about chronic Lyme, which appears to be quackery.

      Borrelia burgdorferi detected by culture and PCR in clinical relapse of disseminated Lyme borreliosis concluded that “The treatment of Lyme borreliosis with appropriate antibiotics for even more than 3 months may not always eradicate the spirochete.”

      This is from 1999. Despite a promising start with 165 patients, it appears it the actual intervention was limited to only 13 people.

      Comparison of oral cefixime and intravenous ceftriaxone followed by oral amoxicillin in disseminated Lyme borreliosis states “prolonged courses of antibiotics may be beneficial…since 90% of the patients showed excellent or good treatment responses.”

      This appears to be from 1998, it has no “placebo” control group making it relatively worthless, and found no difference between either treatment arm. Plus, is this “Lyme” or “chronic Lyme”? There’s a difference.

      In Treatment of late Lyme borreliosis, the study compared ceftriaxone followed by 100 days of oral antibiotics to 14 days of ceftriaxone alone, and in comparison to the prolonged antibiotics, the researchers concluded “short periods of treatment were generally not effective.”

      I can’t even find this one.

      One study titled Physician preferences in the diagnosis and treatment of Lyme disease in the Unites States sent questionnaires to physicians in Lyme disease endemic areas and compiled the results of seventy-eight responders. Fifty-seven percent of responders treated patients with late Lyme disease for 3 months or more. This survey documented significant differences between the CDC recommendations and actual practices. When the treatment recommendations are not being followed by over half of treating physicians, it indicates that the recommendations are likely not appropriate for current clinical use.

      Questionnaires aren’t proof of patient improvement.

      The usual mish-mash of animal studies, mixing of chronic and acute Lyme, and assertions.

      Oh, and sarcasm, arrogance and cherry-picking.

  48. MAIYYYYYZ says:

    Well, since apparently I have chosen to educate people today, I suppose I should also tear into the studies that those like Dr. Hall cling to for whatever reason. There a few studies that that IDSA base their treatment guidelines on, and although the studies themselves are good, the CONCLUSIONS DRAWN by the researchers are flawed.

    Scientists can see the difference. Lay-persons usually just skip to the discussion and think “yea, what they said.”

    If there are any people on this thread with half a science education, try to follow the flaws in the research which I will so kindly outline for you. If you are a lay person just on here looking for a reason to not talk to your friend with Lyme anymore, just skip it. You are hopeless.

    Here you go:

    In the first study, by Klempner et al, titled Two controlled trials of antibiotic treatment in patients with persistent symptoms and a history of Lyme disease, patients were treated with 30 days of IV antibiotics followed by 60 days of oral antibiotics. Patients who received antibiotics did not improve more than patients who received placebo. However, clinically patients who do not improve with intravenous ceftriaxone, 2 g daily for 30 days, followed by oral doxycycline, 200 mg daily for 60 days may get better with prolonged IV antibiotics beyond 30 days. Further, such patients may require alternative antibiotic choices and evaluation for coinfections. These studies used a very limited treatment approach and conclusions drawn from these should be guarded.

    The next study titled Study and treatment of post Lyme disease: a randomized double masked clinical trial by Krupp et al, actually found that “patients assigned to ceftriaxone showed improvement in disabling fatigue compared to the placebo group.” For those patients suffering from severe fatigue, this study showed that a prolonged IV antibiotic is an effective treatment. However, it was the researcher’s opinion that “despite improvement in fatigue, given the lack of improvement in cognitive function and the risk of serious complications, additional antibiotic therapy for PTLDS could not be recommended.” Given the serious complications that arose in this study, I question the researchers screening of patients for appropriateness of IV therapy in general and/or monitoring throughout IV therapy. Obviously, competent physicians are capable of making clinical decisions in regards to appropriate drug choice and method of administration on a case by case basis.

    In the final study, titled A randomized, placebo-controlled trial of repeated IV antibiotic therapy for Lyme encephalopathy by Fallon et al, concluded, “The ceftriaxone group showed a slightly greater improvement at 12 weeks, but at 24 weeks, both groups had made similar gains. Any improvements noted disappeared after therapy was discontinued.” Although the patients did have improvements from IV antibiotics, they relapsed when antibiotics were discontinued, indicating the strong possibility that the infection, as demonstrated in the Rhesus Macaques research, persisted despite the treatment.

    The conclusions of the above studies have been criticized in the medical literature. One article, titled Insufficient evidence to deny antibiotic treatment to chronic Lyme disease patients, suggests that “physicians should consider the limitations of the evidence before denying antibiotic treatment for CLD.” Another review, titled Antibiotic retreatment of Lyme disease in patients with persistent symptoms: a biostatistical review of randomized, placebo-controlled clinical trials, reviewed the same studies and concluded “This biostatistical review reveals that retreatment can be beneficial. Primary outcomes originally reported as statistically insignificant were likely underpowered.”

    So, those of you that are still with me (you asked for research, you got it) let me ask you a question. If we ignore the nearly 80 articles I already cited for you, and the flaws in the four articles above, and say “Chronic Lyme doesnt exist,” what happens to the patients who have the persistant infection?

    Well, dears, they die. As follows:

    The Journal of Neuropsychiatry published a case study titled Rapidly progressive frontal-type dementia associated with Lyme Disease. It describes a patient where “antibiotic treatment resulted in transient improvement, but the patient relapsed after antibiotics were discontinued.” This relapse resulted in death. The study concluded “prolonged antibiotic therapy may be necessary.”

    So maybe before spouting off or jumping on Dr. Halls embarressing band wagon, you should think about what this kind of ignorance does to the patients.

    1. WilliamLawrenceUtridge says:

      If there are any people on this thread with half a science education, try to follow the flaws in the research which I will so kindly outline for you. If you are a lay person just on here looking for a reason to not talk to your friend with Lyme anymore, just skip it. You are hopeless.

      People might stop talking to Lyme patients because their diagnosis (in many cases more of a “proposed” diagnosis) becomes an identity and the patient may talk of little but elaborate conspiracies, victimization and their latest round of symptoms.

      Study and treatment of post Lyme disease: a randomized double masked clinical trial

      So the conclusion for this was “don’t treat PLS with antibiotics”, and did they give a post-study survey to determine if patients guessed whether they were in the treatment group or not? Fatigue is extremely susceptible to placebo effects, guessing you’re in the no treatment group can have a significant effect.

      Although the patients did have improvements from IV antibiotics, they relapsed when antibiotics were discontinued, indicating the strong possibility that the infection, as demonstrated in the Rhesus Macaques research, persisted despite the treatment.

      …or, the improvement is totally unrelated to infection.

      Again, I ask, why are these studies so unconvincing to genuine experts? If you say “conspiracy”, you lose the discussion.

  49. MAIYYYYYZ says:

    William, let me help you.
    1. Take the title of the research article
    2. Copy and Paste in into google

    If that is too confusing or too much trouble for you, I will do it for you.

    http://www.ncbi.nlm.nih.gov/pubmed/8740119

    One study titled Physician preferences in the diagnosis and treatment of Lyme disease in the Unites States sent questionnaires to physicians in Lyme disease endemic areas and compiled the results of seventy-eight responders. Fifty-seven percent of responders treated patients with late Lyme disease for 3 months or more.

    This article proves that over half of physicians are treating late lyme as an infection that persists. So I dont know what experts you are referring to, other than Dr. Hall who is spreading ignorance when she knows better, or at least should know better.

    “Your citations are a mixture of animal studies (hypothesis-generating, not confirming in humans”

    Yes Im sure you quickly reviewed all 80 or so articles I referenced for you.

    This is exactly why I said in the beginning “I cannot believe I am wasting my time on this.”

    Because there are total weirdos out there, like you, that look at the devestating effects of a horrible nuerodegerative disease that is taking lives and make it into “If you say “conspiracy”, you lose the discussion.”

    Lose the discussion? This is peoples lives and their ability to get treated that we are talking about. Noone wins. Everyone loses.

    I have one more peice of advice for all and then I am truely done wasting my time here.

    THINK FOR YOURSELF. EDUCATE YOURSELF. Not just with Lyme Disease, but with all things political.

    Because there will always be some person with a fancy title around their name and big words that will think for you if you let them.

    If you dont do the research and come up with your own opinion, simply stating “I dont know” is a much better option than blinding trusting those with alternative motives much to the detriment of others.

    Lets say, for arguments sake, Chronic Lyme is from a persistant infection. Mounting research is accumulating to support this idea. And if Chronic Lyme is from a persistant infection, you have no idea the damage you are doing to these patients by insisting otherwise with limited evidence to do so.

    1. WilliamLawrenceUtridge says:

      The title of your 1996 paper is “Physician preferences in the diagnosis and treatment of Lyme disease in the United States.” What were the objective patient improvements? You don’t know, because all the study did was ask practitioners what they thought. Great for marketing research. Bad science. And it “prove[d] that over half of physicians are treating late lyme as an infection that persists” in 1996. Nigh on two decades ago. This is not cutting edge research, it’s barely research.

      Yes Im sure you quickly reviewed all 80 or so articles I referenced for you.

      This is exactly why I said in the beginning “I cannot believe I am wasting my time on this.”

      What do the experts think of your 80 studies? Why do expert review panels find them so unconvincing?

      Also, you aren’t chained here. It’s a big internet. Feel free to explore it. The internet is a playground.

      Lose the discussion? This is peoples lives and their ability to get treated that we are talking about. Noone wins. Everyone loses.

      People treated with antibiotics given through a central line can lose their lives. Society suffers from antibiotic-resistant bacteria. All for a treatment that, when tested, shows minimal evidence of objective improvements. If you want to help people, conduct well-controlled studies, not market research. If those studies consistently fail to support your hypothesis, consider your hypothesis might be wrong. Science will change its mind, quite quickly, with good evidence. Witness how we now treat ulcers.

      Because there will always be some person with a fancy title around their name and big words that will think for you if you let them.

      I have no fancy title, but nor do I have the time to parse the literature and undertake the multi-decades of studies it would require to become an infectious disease specialist. So I trust the experts. Who find your 80 studies unconvincing. That’s good enough for me.

      Lets say, for arguments sake, Chronic Lyme is from a persistant infection. Mounting research is accumulating to support this idea. And if Chronic Lyme is from a persistant infection, you have no idea the damage you are doing to these patients by insisting otherwise with limited evidence to do so.

      1) That’s an argument, it’s not proof

      2) If research continues to mount, that’s excellent and I hope the true nature of CLD is determined. I hope you’ll consider the hypothesis that it is unrelated to Lyme ticks.

      3) The problem is, there is limited, and unconvincing evidence that CLD is related to Bb infection. If it is, more work needs to be done, obviously. If it’s not, the work that continues to be done is a waste of time, money and monkeys. Sad.

  50. MAIYYYYYZ says:

    If I seem like I am being hard on you, William, I apologise. I just have such a hard time with closemindedness. I do not understand it, I cannot get past it when smart people put blinders on.

    Let me remind you that:

    “The exact cause of PTLDS is not yet known.”

    Noone knows.

    I cannot tolerate people that say they know something when the scientific evidence is conflicted. Especially scientists or medical professionals.

    First, do no harm, includes recognizing that you don’t have the answer, and continuing to search for the answer until you do. Alienating people that are suffering by spreading this kind of ignorance is unacceptable and downright cruel.

    I have already proven to you that research is conflicted in this area. If you would like to continue to insist that it is not despite the many research articles that have been provided by myself and others then you are truly not interested In science and are only interested in shoving your bias opinion down everyone’s throat.

    “I cannot believe I am wasting my time here” because I know that when seemingly educated people choose to ignore all research contrary to their personal opinion, there is no learning that can be done with further discussion.

    When you are no longer listening to the patients, you cease to be an effective doctor. Bacteria evolve, and so should guidelines. Becoming stagnant in the practice of medicine as disease all around you evolves is foolish. Treatments and medical opinions need to evolve with the needs of the patients. Only by dropping your arrogance and questioning areas of conflict can you grow.

    True scientists know that we don’t know. We don’t know anything. Wake up and smell our own shortcomings. This petri dish in which our laws of physics operate quickly disintegrates when we get a little too small or a little too big for our previous measurements.

    How much do we understand quantum physics? What do we truly know about microbiology? If we understand infection so well, why can we not stop it from happening time and time again? Because we don’t have the answers. And we don’t have the answers with Lyme Disease. The sooner we can all stop pretending we do, on both sides of the fence, the sooner we can come together to help the patients that so desperately need us.

    Further discussion on this topic should be working towards the greater good. If this dicussion is about “winning or losing” at the expense of a population of suffering people, I have no interest in being a part of it.

    1. weing says:

      “I just have such a hard time with closemindedness.”
      It’s pretty obvious you are suffering from it. But, good news. Recognition of the problem is the first step to treatment. Just try looking for evidence that is at odds with what you believe to be true. Try to think that you may be wrong. Having a wife helps in this.

      1. MAIYYYYYZ says:

        Or you could just scroll up and view the 80 research articles I cited along with my review of some of the research set forth by the author and come up with some sort of intelligent response.

        That would be good too.

        1. Chris says:

          Could you scroll up and read the response to the article on macaques that said it was worthless? Even though you claim there are lots of papers, you seem to be ignoring the critiques that show they are badly done and sometimes don’t say what you think they say.

          As WLU asked above:

          Again, I ask, why are these studies so unconvincing to genuine experts? If you say “conspiracy”, you lose the discussion.

          1. MAIYYYYYZ says:

            I will ignore your sarcasm.

            Please define genuine experts.

            I have already cited that the majority of treating physicians treat this illness as a chronic infection.

            You will have to be specific on who you feel are experts if you want me to answer this question.

          2. MAIYYYYYZ says:

            Oh, and I deeply apologise that in my extensive review of literature I left out one article that you randomly put a link up of and said nothing. Maybe you could put forth some effort to read it and summerize it for us if there is a point you are trying to make with that particular article.

          3. Chris says:

            It was not random. It was posted in the comments of the PLOSone article you posted. Part of evaluating a paper is to actually look at the critical responses to that paper, something you are ignoring. Much like Columbus ignored the scholars who told him and Queen Isabella that the circumference of this planet was much larger than what he claimed.

            That is cherry picking.

          4. MAIYYYYYZ says:

            Harriet Hall,

            You are not asking better questions. You are making conclusive statements regarding an area of science that research is conflicted. After demonstrating that you are unclear of the definition of a multi-systemic illness, you proceeded to name drop physicians and make it appear that their treatment methods are inappropriate. You then conclude:

            “The belief that chronic Lyme disease exists is not supported by the evidence.”

            Clearly, the belief that chronic Lyme disease exists is supported by evidence, as I demonstrated throughout this thread. You are stating your opinion as fact, and this is damaging to the science community. Then you are quoting other peoples opinion to support your own as if it is some sort of research.

            As far as controlled studies, I have already discussed the flaws in the research used to write the IDSA guidelines. It is not a secret that the panel that wrote and reviewed these treatment guidelines had conflicts of interest; this is public information that can be obtained on the National Guidelines Clearinghouse web page. The reason that over half of physicians in endemic areas are not using the IDSA guidelines is that they do not work.

            As you continue to deny the possibility that Bb can persist in a host despite mounting evidence, research has moved on to the better question, “Why does it persist?” And they are finding numerous mechanisms of persistence.

            The actual research that you are relying on does not support the idea that Bb doesn’t persist, it supports that the limited antibiotic treatment protocols used in the studies were not effective.

            Since you seem to be a big fan of name dropping, you may be interested in knowing that at the recent NIH conference, Mr. Breen voiced his concern that when symptoms persist, “we don’t have a good way to test for a cure.” The NIH also mentioned that they are now supporting “studies of persistence of infection after antibody treatment using a variety of animal models-primarily mice, but also nonhuman primates.” The conference is publically accessible online and you are welcome to view it.

            Please get your facts straight so that your conclusions can be scientifically sound.

          5. MAIYYYYYZ says:

            Chris,

            I am not ignoring you. I encourage you to state your opinion and support it with evidence. So:

            1. State your opinion
            2. Support it with your interpretation of the article.

            Im getting a little tired of doing all the work around here.

          6. Chris says:

            Actually, I am ignoring you. I see signs of something that was in a relative who would write long screeds and then also do lots of impulse internet shopping.

            All I see is lots of typing with a flavor of cherry picking. I especially love the quoting of someone who wrote a text book almost a century ago that restated a myth. I was in third grade when I learned about Eratosthenes, but that was back in the early 1960s when California had enough money for their public education system (though the US Army paid for their share, since it was Stillwell Elementary in Ft. Ord, that building is now a Navy Language School). I think that anyone who claims that folks in the fifteenth century thought the world was flat has an education lacking in history, science and critical thinking.

            I see no reason to explain a link I posted. I assume that if you are on the internet and posting links that you actually know how to click on the link and read it yourself. Enough said.

        2. weing says:

          My mistake. I thought you had recognized your problem.

          1. MAIYYYYYZ says:

            Weing, it really appears you have so much to offer this discussion. I am so glad you are here to enlighten us with you knowledge and your well thought out responses.

          2. weing says:

            I told you it was my fault. I can’t do anything for your closed-mindedness until you realize you have a problem and that all that you think about this may be wrong.

          3. MAIYYYYYZ says:

            Thats okay Weing, you clearly have not followed this thread to make such a statement as all I am asking people to do is stay openminded in light of conflicted research.

            If you could at least lace your insults with any sort of intellectual contribution to the discussion that would be preferable.

          4. weing says:

            ” have already cited that the majority of treating physicians treat this illness as a chronic infection.”
            You mean the majority of physicians treating this condition treat it as a chronic infection. That is not the majority of physicians. I have patients who are being treated by said physicians. I tell them right off that the studies don’t support this treatment and they are wasting their time and money. We need treatment for the sequelae of Lyme that some patients experience. You seem to have found the answer and stopped asking questions. I am still looking for treatment of the real problem. I may not know what this supposed syndrome is, but I know that the studies show what it is not. It is not a chronic infection.

          5. MAIYYYYYZ says:

            At last you chime in with something useful.

            Here is where you are wrong. The research does not difinitively prove that the symptoms are not from persistant infection.

            You have made your assumtion too soon. Because that is all it is, an assumption.

            Keep asking questions. But don’t rule out chronic infection too soon. Even the CDC states more research needs to be done in this area based on recent animal studies.

            At the recent conference the NIH commented on this very issue.

            You cannot turn your back on the many articles I cited for you. Research is where the answers lie, and research is conflicted in this area.

            I am only asking you to stay openminded, which the author of this article has failed to do.

          6. MAIYYYYYZ says:

            Here is a couple more recent articles examining the actual mechanisms that Bb can persist in a host.

            I am just awed that seemingly competent physicians can continue to pretend this research does not exist.

            http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3636972/

            http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3480481/

            I am sure there are no pathologists here, but biofilm forming bacteria create chronic infections. Bb is showing evidence of biofilm formation in the second link. This was published in 2012.

            I am not saying every person who has ever been exposed to Bb ends up with a persistant infection, but in light of mounting evidence such as this, how can you continue to not consider this in some patients?

            It just seems like such an ignorant approach to medicine. It is you that have truely stopped asking questions.

          7. MAIYYYYYZ says:

            Finally, here is a link that explains how biofilm forming bacteria create chronic infections in case you do not want to take my word for it:

            http://www.ncbi.nlm.nih.gov/pubmed/10334980/

            I really dont know how much research I have to throw at your thick skulls to get you to think outside the box here.

            Its so sad that such educated people have forgotten how to think for themselves. So many physicians become stagnent in their practice over time. Unfortunately, bacteria are not stagnent, and so such physicans and their outdated practice methods eventually get left behind.

            1. Harriet Hall says:

              Some of us have not stopped asking questions, we just ask better questions. We know that demonstrating bacterial persistence in biofilms, etc. does not constitute proof that chronic infections are the cause of chronic Lyme, and we ask: “If the doctors treating chronic Lyme are anecdotally getting such great results and so many patients are anecdotally reporting improvement, why have controlled studies shown no improvement with long-term antibiotics?” And we can think of a lot of other things that could better explain the facts.

          8. WilliamLawrenceUtridge says:

            The research does not difinitively prove that the symptoms are not from persistant infection.

            You can’t prove a negative. It’s up to proponents to come up with positive proof that CLD exists, is a unique entity distinct from, say, chronic fatigue syndrome, and that it is caused by Bb infection. Continuously insisting that there is ONE CAUSE and moving the goalposts to retreat from dissenting information does not help patients, it strings them along.

            If the studies you cite are convincing to scientists, perhaps we will have a sea-change in the opinion on matters. That would be great. But in the meantime, they appear to be hypothesis-generating papers, not confirmation. So, more research.

          9. MAIYYYYYZ says:

            “If the studies you cite are convincing to scientists, perhaps we will have a sea-change in the opinion on matters.”

            William, I am a scientist.

            The research is conflicted, and so are the opinions.

            Can you please stop acting as if there is some person with super human letters around their name that can read research better than you can. Have some faith in yourself.

            You are smart. Learn. Read. Educate yourself. Develop your own opinion and support it.

          10. WilliamLawrenceUtridge says:

            The research is conflicted, and so are the opinions.

            So why are you claiming certainty that CLD is caused by occult Bb infection? If the research and opinions are conflicting, then witholding certainty seems the sensible option.

            Can you please stop acting as if there is some person with super human letters around their name that can read research better than you can. Have some faith in yourself.

            I have no doubt that if I applied myself and spent years learning about biochemistry and infectious disease, I could parse the literature in a meaningful way. But I’m not interested, so I defer to experts – just like I don’t know how to fix my own car, change my oil, grow my own food, build a computer, plumb my own house or fly myself from city to city. I defer to experts because I lack the time and interest to become one in every single area I encounter. If the experts are unconvinced, I’m quite sure that they have their reasons (and their reasons aren’t “conspiracy” – Big Pharma would love expensive, long-term antibiotic therapy to be an effective treatment for CLD, they could sell more drugs).

            If you are a scientist, you are either not an infectious disease specialist, or you are terrible at your job.

    2. WilliamLawrenceUtridge says:

      “The exact cause of PTLDS is not yet known.”

      Noone knows.

      Don’t you think that this means it’s inappropriate to leap, and dogmatically adhere to the conclusion that it’s caused by Bb?

      First, do no harm, includes recognizing that you don’t have the answer, and continuing to search for the answer until you do. Alienating people that are suffering by spreading this kind of ignorance is unacceptable and downright cruel.

      Someone has a central line put in for antibotics. It becomes infected with MRSA. They die. I think they were harmed, and on the basis of shoddy evidence.

      Spreading certainty around as if it were a virtue also seems unacceptable to me.

      When you are no longer listening to the patients, you cease to be an effective doctor.

      I rely on my doctor to filter the scientific literature so I get the best, most empirically-supported treatments available to me. I don’t rely on him to be a vending machine for whatever I want. If that were the case, I would want them to give me morphine ’cause I’ve always wanted to try it.

      Only by dropping your arrogance and questioning areas of conflict can you grow.

      I think that insisting you know the One True Cause of the vague entity known as chronic Lyme disease is arrogant, and blind to the fact that some real and credible experts disagree with you regarding the interpretation of the scientific literature.

      If we understand infection so well, why can we not stop it from happening time and time again?

      Because medicine is complicated? We did manage once, we eliminated smallpox. But otherwise you are insisting that unless we perfectly understand every aspect of a condition, that means we know nothing (or that your opinion wins by default). These are logical fallacies.

      The sooner we can all stop pretending we do, on both sides of the fence, the sooner we can come together to help the patients that so desperately need us.

      Note that I’m NOT pretending I have the answers. Quite the opposite. I’m pointing to the ambiguities and shortcomings regarding the evidence for chronic Lyme disease and the failure of specialists to recognize it as a distinct and meaningful entity as reason to not pretend we have the answers. I don’t think it has been conclusively proven that CLD is caused by the Bb bacterium. You are the one claiming certainty, and that we have to abandon good science in favour of “listening to patients”. What if patients are wrong? What if they are being systematically deceived by well-meaning or outright exploitative charlatans?

      Further discussion on this topic should be working towards the greater good. If this dicussion is about “winning or losing” at the expense of a population of suffering people, I have no interest in being a part of it.

      Suffering should not overwhelm science or evidence. I believe preventing patients and society from being harmed through the unproven use of antibiotics is a very strong indication of where the greater good is right now.

      1. MAIYYYYYZ says:

        “I don’t think it has been conclusively proven that CLD is caused by the Bb bacterium.”

        Exactly.

        And it has not been conclusively proven that CLD is not caused by the Bb bacterium, despite the authors opinion.

        The reseach is conflicted, and thus the authors conclusions are scientifically inappropriate.

        1. WilliamLawrenceUtridge says:

          If you are reading Dr. Hall’s post as “CLD is definitively not caused by chronic Bb”, that might be your own projection. Dr. Hall’s post went into who didn’t think it was a convincing link, and why, and the ethical problems of those who claim certainty.

          You seem to be mising something though – while it is inappropriate to categorically say “CLD is not caused by occult Bb infection”, it is also inappropriate to say “It might be, therefore central lines with long-term antibiotics”. It’s pretty much inappropriate to do anything with patients but treat their symptoms and conduct more studies. Certainty is unwarranted, in both directions. Playing to the poor suffering patient is not a solution.

      2. RedKat says:

        You would change your mind on withholding antibiotics if you watched your child die from an undiagnosed or misdiagnosed infection.

        How can you possibly know how LLMDs operate if you’ve never been to one? Their critics make up all kinds of stuff about them, so unless you have personal experience, you can’t say anything about them with certainty.

        My doctor considers at every appointment whether I still have Borreliosis or not, along with my other infections. He also says that some patients who come see him do not have Lyme in spite of their Lyme-like symptoms. He’s not just a hammer, he’s a whole toolbox, familiar with the whole body and numerous health issues, including tick borne infections, CFS/ME, toxins, viruses, GI problems, and other problematic infections such as chlamydia pneumonia. He’s addressed my GI issues, my kidney issues, my heart issues, my depression, and much more.

        And there is much that is not known about the Lyme Complex. No one is claiming to know all about it. It is a mysterious condition that is difficult to treat, as I am, because we don’t have good enough testing to pin down what’s happening in my body. Do you see why we want more research? But first that requires us to be taken seriously and for people like yourself to stop making up claims and stories about us and our doctors.

        Clearly, not everything is Lyme. I also have Babesia and Bartonella. They are all harder to kill when they coinfect a patient. Discerning which is causing which symptoms is tricky and imprecise. Bartonella has a lot of overlap with Lyme. Some people claiming CLD could very well have chronic Bartonella.

        There is a certain amount of “try and see” in my treatment as we look to see which meds actually work for me. I am deeply grateful there is a doctor who won’t abandon me to die as you think doctors should, given the lack of good lab tests to give us the answers we desire.

        If we can get good tests, we could do the proper research for diagnostics and best treatments. Until then, we rely on the docs willing to use good clinical judgement to get us well.

        1. WilliamLawrenceUtridge says:

          I might change my mind if my child died of misdiagnosed infection, but that doesn’t mean I would be right about it, nor does it change the fact that conventional treatment is curative for Lyme disease, nor does it change the fact that there is still no evidence the vague set of symptoms known as “chronic Lyme disease” by LLMDs and their patients are actually caused by Lyme disease. Reality doesn’t change because humans get sad.

          How can you possibly know how LLMDs operate if you’ve never been to one?

          The question for me is, how can LLMDs charge their patients money if they don’t have any evidence their treatments work? Effective treatment should work irrespective whether I see it or not.

          Do you see why we want more research? But first that requires us to be taken seriously and for people like yourself to stop making up claims and stories about us and our doctors.

          You know what would probably help? If patients ceased to use threats of violence and political interference to force scientists to continue to pursue what are generally seen as unpromising avenues, avenues already explored many times, and so forth. You’re driving away researchers and money, in pursuit of a mechanism that requires testing, not acceptance. Acceptance comes when evidence is unambiguous.

  51. MAIYYYYYZ says:

    “When Columbus lived, people thought that the earth was flat. They believed the Atlantic Ocean to be filled with monsters large enough to devour their ships, and with fearful waterfalls over which their frail vessels would plunge to destruction. Columbus had to fight these foolish beliefs in order to get men to sail with him. He felt sure the earth was round.”
    -Emma Miler Bolenius, American Schoolbook Author, 1919″

    Im sure Dr. Hall would have blogged till the cows came home about how the earth was flat. BUT LOOK AT THE EVIDENCE!!!! IF IT WAS ROUND WE WOULD FALL OFF!!! I DONT CARE THAT THERE IS MOUNTING EVIDENCE THAT ITS ROUND, ITS FLAT AS FAR AS I CAN SEE!!!!

    And Im sure you would all be nodding enthusiastically, after all, how could she be wrong? Its so obviously flat!

    The biggest mistake a scientist can make is to stop asking questions.

    Or you could just look at areas in medicine where research is conflicted and take the most bias and offensive position possible in order to get attention and make a name for yourself. Even if it hurts others to do so. You can link to a few articles and call it science. Thats fine, too.

    1. Chris says:

      “-Emma Miler Bolenius, American Schoolbook Author, 1919″

      Was very wrong. She obviously did not know about Eratosthenes, and was quite wrong about academic scholarship of the fifteenth century. Children who read her schoolbook were not given a proper education.

      She missed some real evidence: that Christopher Columbus (Cristobal Colon as he was known in Spain) actually underestimated the circumference of this planet: http://www.phy6.org/stargaze/Scolumb.htm . This is what happens with cherry picking your evidence.

    2. WilliamLawrenceUtridge says:

      “When Columbus lived, people thought that the earth was flat. They believed the Atlantic Ocean to be filled with monsters large enough to devour their ships, and with fearful waterfalls over which their frail vessels would plunge to destruction. Columbus had to fight these foolish beliefs in order to get men to sail with him. He felt sure the earth was round.”

      Columbus didn’t think the earth was flat. He knew it was a sphere, as did his educated contemporaries. Columbus thought the earth was a good deal smaller than it actually is, and wasn’t aware a continent was in his way (his goal was to reach the Spice Islands of Asia).

      The biggest mistake a scientist can make is to stop asking questions.

      Yup. But you don’t seem to realize that one question that “Lyme-literate” doctors have stopped asking is “are my patient’s symptoms caused by Bb infection?” The answer might be a resounding NO.

      Also, you should stop pretending that Dr. Hall is some big name researcher proclaiming her opinions in JAMA or PLOS-ONE. This is a popular blog designed to educate about science and critical thinking by bridging the gap between doctor and layperson. She’s not part of some VAST CONSPIRACY TO KEEP TEH LYMERS DOWN!!! She’s a retired doctor, flight surgeon and (not retired) author.

      1. MAIYYYYYZ says:

        “Columbus didn’t think the earth was flat.”

        Yes William, you correctly read the quote. You may want to re-read it if you thought you were making a point with this statement.

        “Yup. But you don’t seem to realize that one question that “Lyme-literate” doctors have stopped asking is “are my patient’s symptoms caused by Bb infection?” The answer might be a resounding NO. ”

        Or its yes. Which is my point. The research is conflicted. You do not know, and neither does the author. So stop spreading ignorance by pretending that you do.

        “Also, you should stop pretending that Dr. Hall is some big name researcher proclaiming her opinions in JAMA or PLOS-ONE. This is a popular blog designed to educate about science and critical thinking by bridging the gap between doctor and layperson. She’s not part of some VAST CONSPIRACY TO KEEP TEH LYMERS DOWN!!! She’s a retired doctor, flight surgeon and (not retired) author.”

        Oh trust me, in no way have I confused Dr. Hall with anyone involved in research. If you read my first statement, it was as follows:

        “You (Dr. Hall) are obviously only writing this to get a reaction and are clueless about infection and science in general.”

        I do not know why you continue to imply that I have some conspiracy theory. I presented my opinion and the research to back it up. I think I was clear with what I feel Dr. Hall’s motivation is behind this blog in general.

        I stand by my original statement before you engaged in this dialog with me.
        I have merely provided you with the information that you requested.

        1. WilliamLawrenceUtridge says:

          So stop spreading ignorance by pretending that you do.

          Saying “the current evidence for Lyme disease and chronic Lyme disease does not justify the use of long-term antibiotics to treat a type of bacterial infection that is hypothesized but never proven to sequester itself in humans” is not ignorance. It is an appropriate comment on the context of our current knowledge of Lyme disease and Bb infection.

          I don’t know why you keep claiming I and others are “hiding knowledge” or “spreading ignorance” or whatever other nonsense you claim. We are persistently challenging your unsupported claims of certainty regarding knowledge of this clinical entity.

          While we both appear to agree on the ambiguity of the research, we appear to be interpreting it in different ways. We are saying “no treatments seem to be currently supported” and somehow you translate that into dogma that Bb is not, does not and can not have unexpected properties. Odd. I am saying of you – that ambiguity does not justify any conclusions, and in particular does not justify the current treatments proposed by LLMDs.

          I find your claim that you are a “scientist”, your attempt at authority, to be a little bizarre, and completely at odds with your certainty regarding an ambiguous set of literature. Are you a social scientist perhaps, or an economist? Maybe an engineer? All disciplines do require knowledge and intelligence, but all are wildly different from medical expertise.

  52. MAIYYYYYZ says:

    OH. MY. GOSH.

    Way to completely miss the point.

    If someone has anything intelligent to say, please give it your best shot now. I am quickly losing interest in this thread as it seems I am the only scientist in the room.

    I stated my opinion, and you asked for research. Not only did I provide extensive research for my opinion, but also reviewed the research that conflicts with my opinion. I provided research that demonstrates the majority of treating physicians agree with my opinion.

    I made the point that science is constantly evolving and we need to remain openminded in areas where research is currently conflicted.

    And the responses have consisted of “winning or losing” the discussion, that “having a wife will remind you of how wrong you are,” and that somehow by presenting a review of literature on both sides of the argument I am “cherry picking.”

    Again, if anyone has anything scientific to offer, the time would be now.

    1. WilliamLawrenceUtridge says:

      Again, if anyone has anything scientific to offer, the time would be now.

      “The first principle is that you must not fool yourself – and you are the easiest person to fool.”

      - Richard Feynman, Caltech commencement address, 1974

    2. Sawyer says:

      “Again, if anyone has anything scientific to offer, the time would be now.”

      Yes, clearly it’s everyone else’s fault that you barged into this discussion a month late. Promptness is now required from the author, who totally didn’t have a new article that she had to write and respond to today. And the comments were just so sparse on this topic, obviously more discussion is merited. It’s unforgivable that the commenters aren’t waiting on you hand and foot, considering the massive amount of money they get for their contributions.(/sarcasm)

      Pseudoscientists are already a funny bunch, it’s just too bad they have no sense of timing or irony. Then they could get real jobs as comedians and cure patients with laughter.

      1. MAIYYYYYZ says:

        “Yes, clearly it’s everyone else’s fault that you barged into this discussion a month late. Promptness is now required from the author, who totally didn’t have a new article that she had to write and respond to today. And the comments were just so sparse on this topic, obviously more discussion is merited. It’s unforgivable that the commenters aren’t waiting on you hand and foot, considering the massive amount of money they get for their contributions.(/sarcasm)

        Pseudoscientists are already a funny bunch, it’s just too bad they have no sense of timing or irony. Then they could get real jobs as comedians and cure patients with laughter.”

        Well hello Sawyer its so nice of you to randomly enter a conversation spewing insults without any contribution to the discussion. That seems to be the general trend around here.

        Apparently anyone has an opinion that doesnt agree with that of the author, the first step is for her groupies basically demand an evidence based review of current literature, and if it is provided, the second step is to ignore the evidence and just get emotional and try snide remarks as a tactic.

        If you were following the thread at all, you would be aware that this comment is directed to those I was actively engaged in conversation with, not the author. Im talking about those who immediately attacked my opinion and then demanded scientific evidence from me.

        But if belittling everyone with an opinion that differs from yours generally works for you, by all means, keep trying that. In my experiance, that doesnt get you very far in the science community. But its clear that a science community is not what we have going on this thread anyway.

        Actually, It kind of feels like I have entered some sort of Harriet Hall cult here or something. Weird, creepie, and strangely interesting.

        1. WilliamLawrenceUtridge says:

          Apparently anyone has an opinion that doesnt agree with that of the author, the first step is for her groupies basically demand an evidence based review of current literature, and if it is provided, the second step is to ignore the evidence and just get emotional and try snide remarks as a tactic.

          After months of seeing the same monkey sources recycled without addressing our comments (“people aren’t monkeys”), and after complete failure to respond to the simple question “Why aren’t infectious disease specialists convinced?” with anything but “conspiracy”, we get a little sick of the repetition.

          But its clear that a science community is not what we have going on this thread anyway

          Why would you think that? This is a popular blog, focussing primarily on skeptical thinking. Were you expecting some sort of expert on the emerging trends of Lyme research?

          What does the “science community” think of your monkey study? Any infectious disease specialists convinced by it?

          1. MAIYYYYYZ says:

            William you continue to personally attack me on every front for stating my opinion and backing it with research. You have no research to back your opinion, you just continue to talk about your “experts” without defining who you are talking about. There are ID specialists that treat with longer courses of antibiotics. If you are calling the small group of IDSA physicians who wrote the IDSA treatment guidelines, and calling them experts, you may want to take some time out of our busy schedule attacking everyone on this thread and look into the history and current state of those guidelines.

            You continuously bring up the monkey study and start talking about conspiracy. If you want to know what more “experts” think maybe you should read the CDC statement “Recent animal studies have given rise to questions that require further research, and clinical studies to determine the cause of PTLDS in humans are ongoing.” Then you can scroll down to where they cite the monkey study. Or you can review all of the other research I provided and stop acting like I am perseverating on this study, when it is you that is doing so.

            You make assumptions about my opinion with no ground to stand on. Do you even know what my opinion is? Or are you just making that up too by implying that I feel every person that has been exposed to Bb goes on to have persistent infection and requires long term antibiotic treatment? Unfortunately, symptoms that persist years after Bb infection is a much more complicated situation than long term versus short term antibiotics. The possibility of Bb persistence is only one of many issues these patients have. Please do not put words in my mouth.

            I have merely disagreed with the content of the article and stated my opinion: The conclusion that there is NO evidence that Bb persists is not scientifically sound. I have demonstrated that most “experts” agree with me and cited research, quoted NIH conferences, etc. to back up my opinion.

            This entire discussion has been mediated by your insults and challenges. Yet you persist in having no clear opinion of your own, present no research of your own, and continue to behave offensively.

            I am no longer sure what your intention is on this dialog but it is obviously not going anywhere, as you continue to offer nothing but the vomiting of your defensiveness all over the keyboard.

            And yes, I was hoping that those who are actively a part of “science-based” medicine blog would be at least able to have an open dialog about science.

  53. MAIYYYYYZ says:

    I apologise for posting this twice, this thread is getting a bit congested. I will repost my response to Harriet Hall below.

    Harriet Hall,

    You are not asking better questions. You are making conclusive statements regarding an area of science that research is conflicted. After demonstrating that you are unclear of the definition of a multi-systemic illness, you proceeded to name drop physicians and make it appear that their treatment methods are inappropriate. You then conclude:

    “The belief that chronic Lyme disease exists is not supported by the evidence.”

    Clearly, the belief that chronic Lyme disease exists is supported by evidence, as I demonstrated throughout this thread. You are stating your opinion as fact, and this is damaging to the science community. Then you are quoting other peoples opinion to support your own as if it is some sort of research.

    As far as controlled studies, I have already discussed the flaws in the research used to write the IDSA guidelines. It is not a secret that the panel that wrote and reviewed these treatment guidelines had conflicts of interest; this is public information that can be obtained on the National Guidelines Clearinghouse web page. The reason that over half of physicians in endemic areas are not using the IDSA guidelines is that they do not work.

    As you continue to deny the possibility that Bb can persist in a host despite mounting evidence, research has moved on to the better question, “Why does it persist?” And they are finding numerous mechanisms of persistence.

    The actual research that you are relying on does not support the idea that Bb doesn’t persist, it supports that the limited antibiotic treatment protocols used in the studies were not effective.

    Since you seem to be a big fan of name dropping, you may be interested in knowing that at the recent NIH conference, Mr. Breen voiced his concern that when symptoms persist, “we don’t have a good way to test for a cure.” The NIH also mentioned that they are now supporting “studies of persistence of infection after antibody treatment using a variety of animal models-primarily mice, but also nonhuman primates.” The conference is publically accessible online and you are welcome to view it.

    Please get your facts straight so that your conclusions can be scientifically sound.

    1. weing says:

      “Clearly, the belief that chronic Lyme disease exists is supported by evidence, as I demonstrated throughout this thread.”

      That is your opinion. I do not think it is supported by the evidence. I will change my mind if you provide PCR evidence, in humans, meeting the criteria for so called chronic Lyme. We know the current treatment by the CLD “experts” is no better than placebo. If we have evidence of persistent infection, the next step would be establishing experimental protocols to find the best way of eradicating it. If there is no persistent infection, then what are we dealing with? Sequelae, depression, something else entirely? I believe that’s where the problem lies. I may be wrong. I’m just a clinician waiting for the researchers to come up with the answers.

    2. WilliamLawrenceUtridge says:

      Clearly, the belief that chronic Lyme disease exists is supported by evidence, as I demonstrated throughout this thread.

      You didn’t really, though. You cited a lot of bench and animal studies. It’s easy to kill cancer in a petri dish and cure cancer in a rat. Harder in people. Until your studies show proof of effectiveness in people, you haven’t “clearly demonstrated” anything, which is probably why infectious disease docs aren’t convinced by them either.

      It is not a secret that the panel that wrote and reviewed these treatment guidelines had conflicts of interest; this is public information that can be obtained on the National Guidelines Clearinghouse web page.

      “Conflict of interest” is often a way for lazy people to discount opinions they don’t like. Did “conflict of interest” make good science disappear somehow? Maybe it’s not bribes and conflict of interest – maybe they don’t think cell, rat and monkey studies are equivalent to controlled trials in humans. That seems reasonable. People aren’t rats. They aren’t even monkeys (they’re apes). And you prove my point that we aren’t at a “cure in humans” yet stage, right here:

      The NIH also mentioned that they are now supporting “studies of persistence of infection after antibody treatment using a variety of animal models-primarily mice, but also nonhuman primates

      1. MAIYYYYYZ says:

        William, again, you continuously perseverate on the monkey study.

        As far as your comments regarding conflicts of interest, maybe you could email your opinion to National Guidelines Clearinghouse, as well as to businesses all over America. You could also email the IDSA as they did not allow physicians who regularly treat Lyme Disease on their 2010 review panel due to “conflict of interest.” If conflict of interest is just about lazy people discrediting opinions, than Im not sure what all the fuss is about and maybe you could clear things up for everyone.

        “And you prove my point that we aren’t at a “cure in humans” yet stage,”

        Well William, thank you for making my point for me. I guess I can leave the thread now since we are finally on the same page.

  54. MAIYYYYYZ says:

    Yes Weing, I hate to be the bearer of bad news, but that is the opinion that many in the mainstream medical community are considering.

    The CDC has removed the statement “There is no evidence” regarding persistence of infection. They now acknowledge that some doctors believe that continued symptoms may be due to Bb persistence and in light of new literature, more research needs to be done before a conclusion can be reached. The monkey study is listed on the CDC web page. As I stated, NIH is interested in the possibility of persistence of infection as a cause for continuing symptoms in PTLDS.

    Once you are up to date on current literature on this topic, I would love to have a conversation about the real controversy with you, which is long term antibiotic treatment. But it seems that you have some catching up to do first.

    I have referenced 90 + articles that support that PTLDS may be infection mediated. If you have any specific research you are basing your opinions on other than the four studies I already reviewed, please cite them. This discussion is about educating one another, and I would appreciate you extending me the curtousy of explaining what your opinions are based on.

    1. WilliamLawrenceUtridge says:

      They now acknowledge that some doctors believe that continued symptoms may be due to Bb persistence and in light of new literature, more research needs to be done before a conclusion can be reached.

      Emphasis added. In other words, there is still not enough evidence to be convincing.

      1. MAIYYYYYZ says:

        Exactly. More research needs to be done. Some would argue that the research is getting increasingly convincing, some would argue that its not.

        In the meantime, statements like this:

        “I may not know what this supposed syndrome is, but I know that the studies show what it is not. It is not a chronic infection.”

        “Lyme is a multi-systemic illness, and may affect every part of the body causing fatigue, stiff neck, headaches, light and sound sensitivity, tinnitus (ringing in the ears), anemia, dizziness, joint and muscle pain, brain fog, tingling, numbness and burning sensations of the extremities, memory and concentration problems, difficulties with sleep (both falling asleep and frequent awakening), chest pain and palpitations and/or psychiatric symptoms like depression and anxiety.
        That pretty much covers everyone.”

        “CLD was a misnomer, that it is only the latest in a series of many labels that have attempted to attribute medically unexplained symptoms to infections, and that antibiotic treatment is not warranted”

        are harmful and becoming increasingly outdated.

        My opinion is to tread lightly and remain open-minded.

        1. weing says:

          “I may not know what this supposed syndrome is, but I know that the studies show what it is not. It is not a chronic infection.”

          I stand by what I said. There are no human studies. I told you what would convince me, PCR studies in humans. When I find such studies, I will be up to date on the research.

          1. MAIYYYYYZ says:

            Weing,

            I am not asking you to be convinced of anything. I am asking you, in light recent research developments, to be openminded of the possibility that a long standing infection of Bb can persist in a human host despite a short course of antibiotics.

            You refuse to believe that this is a possibility despite my best efforts to educate you that the rest of the medical community has moved forward with considering this.

            If you have any specific research, or clinical experiance, that you are basing your opinions, please cite them.

            I am always open to learning something new. Perhaps you know something that I dont.

          2. MAIYYYYYZ says:

            By the way, here is your PCR evidence in humans:

            ksi J; 1999 Borrelia burgdorferi detected by culture and PCR in clinical relapse of Annals of Medicine, 31(3):225-32.
            Mariamaki M; disseminated Lyme Borreliosis.
            Nikoskelainen J;
            Viljanen MK.

            Of 165 patients treated for disseminated Lyme borreliosis with three months or more of antibiotics (including a minimum of two
            weeks of ceftriaxone), 32 had treatment failure. At follow-up, 13 patients with clinical relapse were PCR or culture positive (10
            PCR positive, 1 culture positive, 2 PCR and culture positive). “In this study, culture or PCR-based evidence for the presence of
            live spirochetes was obtained in more than 40% of the patients with relapsed disease.”
            “The treatment caused only temporary relief in the symptoms of the patients.”
            “We conclude that the treatment of Lyme borreliosis with appropriate antibiotics for even more than 3 months
            may not always eradicate the spirochete.”

            I am sure there are more, but this is the one I came across in about 3 minutes of searching.

          3. MAIYYYYYZ says:

            Here is two more examples of PCR studies in humans:

            Priem S; Burmester 1998 Detection of Borrelia burgdorferi by polymerase chain reaction in synovial Annals Rheumatic Dis, 57(2):118-21
            GR; Kamradt T; membrane, but not in synovial fluid from patients with persisting Lyme arthritis after antibiotic therapy.
            Wolbart K; Rittig MG;
            Krause A. [Persistence:] “Paired SF [synovial fluid] and SM [synovial membrane] specimens and urine samples from four patients
            with ongoing or recurring Lyme arthritis despite previous antibiotic therapy were investigated. RESULTS: In all four cases,
            PCR with either primer set was negative in SF and urine, but was positive with at least one primer pair in the SM specimens.”
            [Diagnosis:] “CONCLUSIONS: These data suggest that in patients with treatment resistant Lyme arthritis negative PCR
            results in SF after antibiotic therapy do not rule out the intraarticular persistence of B burgdorferi DNA. Therefore, in these
            patients both SF and SM should be analysed for borrelial DNA by PCR as positive results in SM are strongly suggestive of
            ongoing infection.”

            Oksi J; Kalimo H; 1996 Inflammatory brain changes in Lyme borreliosis. A report on three patients and review Brain, Dec;119 ( Pt 6):2143-54
            Marttila RJ; Marjamaki of literature.
            M; Sonninen P; et al.
            “In one of the six analysed brain tissue specimens [from a patient who had received more than six months of antibiotic
            treatment prior to death, including two 3-week courses of IV ceftriaxone], B. burgdorferi DNA was detected by PCR.”

          4. MAIYYYYYZ says:

            “I may not know what this supposed syndrome is, but I know that the studies show what it is not. It is not a chronic infection.”

            I stand by what I said. There are no human studies. I told you what would convince me, PCR studies in humans. When I find such studies, I will be up to date on the research.”

            So, does this mean you are convinced that there is a possibility that Bb can persist in a human host despite short (or longer) antbiotic treatment?

          5. weing says:

            “So, does this mean you are convinced that there is a possibility that Bb can persist in a human host despite short (or longer) antbiotic treatment?”

            I didn’t need to be convinced of this possibility. Treatment failures are always possible and I have personally seen persistent and treatment resistant Lyme arthritis. You deal with them when you find them. It’s the nebulous PTLDS that needs to be proven by PCR. I have not read the Oksi paper. If it changes my mind, I’ll let you know after I have read it.

          6. Self Skeptic says:

            weing says:
            October 23, 2013 at 8:53 pm
            “I may not know what this supposed syndrome is, but I know that the studies show what it is not. It is not a chronic infection.”

            I stand by what I said. There are no human studies. I told you what would convince me, PCR studies in humans. When I find such studies, I will be up to date on the research.

            Hmm, I see while I was working on this more comments have been made. Some of my citations will hence be repetitive. But here’s what I came up with:

            Weing,

            Just for fun, I thought I’d see how hard it is to find the information you said you’d accept as evidence of persistent infection. (What can I say, I’m a data nerd.) Here are some papers regarding PCR of Lyme-type borrelia (Bb for short) in humans. (Naturally, all of these studies will be found wanting, by those who maintain categorically that infection never persists after recommended treatment. I didn’t find their arguments convincing; they seem to be indulging in “motivated reasoning”, as WLU puts it.) It seems that everyone agrees that the spirochete doesn’t typically reside in the blood or CSF (except sometimes during early/acute infection), and so PCR and culture positivity is rare in blood and CSF samples. I gather that only skin biopsies from the leading edge of the EM rash of early-stage infection is somewhat reliably positive for Bb. The spirochete can be found in tissue upon necropsy of animals, but t’s not practical to look for it in tissue samples of living humans, because you’d be unlikely to hit just the right spot when taking the sample.

            It looks to me like the dominant Lyme disease models may be one of those subconscious “noble lies”, cooked up by policy makers to avoid branding the East Coast as a plague zone. There’s a long history of this in the field of public health: “calming the fears of the public” is traditionally a part of epidemic management. The internet has made this kind of perception management more difficult, though I think the medical profession and most of the public can still reliably be expected to believe what they’re told by “the authorities.” The difference is, that now it’s possible for patients and caregivers (including family practice MDs), who have first-hand experience of the disease, to find each other, and compare notes.

            I think the Lymerix vaccine, was expected to get rid of the problem, but it didn’t perform as well as was hoped, and by the time it came on the market, people in the worst Lyme zones on the East Coast had already figured out that the dominant authorities weren’t trustworthy. The disease model being promoted, was just too obviously different from the disease, as people were experiencing it. The experts foolishly resorted to ridiculing the patients, instead of heeding them, and the “Lyme Wars” is the result. I guess, from the SBM perspective, it has created a breeding ground for CAM proliferation among the less skeptical of the unserved patient population. And from the pharmascold perspective, Big Pharma also exploits these patients, with expensive and marginally effective symptomatic treatments.

            Infection. 1996 Sep-Oct;24(5):347-53.
            Borrelia burgdorferi DNA in the urine of treated patients with chronic Lyme disease symptoms. A PCR study of 97 cases.
            Bayer ME, Zhang L, Bayer MH.
            Source
            Fox Chase Cancer Center, Philadelphia, PA 19111, USA.
            Abstract
            The presence of Borrelia burgdorferi DNA was established by PCR from urine samples of 97 patients clinically diagnosed as presenting with symptoms of chronic Lyme disease. All patients had shown erythema chronica migrans following a deer tick bite. Most of the patients had been antibiotic-treated for extended periods of time. We used three sets of primer pairs with DNA sequences for the gene coding of outer surface protein A (OspA) and of a genomic sequence of B. burgdorferi to study samples of physician-referred patients from the mideastern USA. Controls from 62 healthy volunteers of the same geographic areas were routinely carried through the procedures in parallel with patients’ samples. Of the 97 patients, 72 (74.2%) were found with positive PCR and the rest with negative PCR. The 62 healthy volunteers were PCR negative. It is proposed that a sizeable group of patients diagnosed on clinical grounds as having chronic Lyme disease may still excrete Borrelia DNA, and may do so in spite of intensive antibiotic treatment.
            PMID: 8923044 [PubMed - indexed for MEDLINE]

            This is a higher degree of positivity from body fluids than most people get (see other abstracts). This is acute infection, the easiest stage to get positive culture or PCR results from body fluids. Most of the patients who are protesting, have late-diagnosed neuroborreliosis, from which it’s unlikely to get positive culture of PCR results, even in patients who have never been treated with antibiotics (see other abstracts).
            Acta Neurol Scand. 2005 Nov;112(5):287-92.
            PCR in lyme neuroborreliosis: a prospective study.
            Pícha D, Moravcová L, Zdárský E, Maresová V, Hulínský V.
            Source
            First Clinic for Infectious Diseases, Second Medical Faculty of Charles University, Faculty Hospital Bulovka, Czech Republic.
            Abstract
            OBJECTIVES:
            DNA proof is the only widely available direct diagnostic tool in Lyme borreliosis. Sensitive PCR detecting of spirochetal DNA was prepared and a prospective study in neuroborreliosis was performed.
            MATERIALS AND METHODS:
            57 hospitalised patients with active neuroborreliosis and proved CSF antibodies synthesis were examined. Nested-PCR (utilizing three targets) was used for the detection of specific DNA in plasma, CSF and urine.
            RESULTS:
            Before treatment 36 positive patients (63.1%) were found in all tested specimens in parallel, 28 patients (49.1%) were positive in urine, 20 in CSF (35.0%) and 16 in plasma 28.0%). Later only urine was tested and the following results were obtained: 17 positive patients (30.0%) immediately after treatment, 8 (14.0%) after 3 months and one patient persisted positivity after 6 months.
            CONCLUSIONS:
            The highest sensitivity of PCR was achieved in the acute period of neuroborreliosis – 63.1% in three body fluids comparing with CSF antibody synthesis.
            PMID: 16218909 [PubMed - indexed for MEDLINE]

            Examination of specific DNA by PCR in patients with different forms of Lyme borreliosis.
            Pícha D, Moravcová L, Holecková D, Zd’árský E, Valesová M, Maresová V, Hercogová J, Vanousová D.
            Int J Dermatol. 2008 Oct;47(10):1004-10. doi: 10.1111/j.1365-4632.2008.03709.x.
            PMID: 18986344 [PubMed - indexed for MEDLINE]
            Related citations

            Mol Diagn. 2001 Mar;6(1):1-11.
            Molecular diagnosis of Lyme disease: review and meta-analysis.
            Dumler JS.
            Source
            Department of Pathology, Division of Medical Microbiology, The Johns Hopkins Medical Institutions, Baltimore, MD 21287, USA. sdumler@jhmi.edu
            Abstract
            The diagnosis of Lyme disease is difficult because tests that reflect active disease or have reasonable sensitivity and specificity are lacking or not timely. Molecular methods are controversial because of differences in assays, gene targets, and limited clinical validation. This review summarizes published assays for Lyme disease diagnosis using skin, plasma, synovial fluid, cerebrospinal fluid (CSF), and urine. Meta-analyses show the strengths and weaknesses of these methods. Overall, assays for skin and synovial fluid (68% and 73%, respectively) have high sensitivity and uniformity. The low test sensitivity of CSF (18%) and plasma (29%), variable sensitivities among CSF and urine assays, and persistence of Borrelia burgdorferi DNA in urine and synovial fluid even with therapy and convalescence make these unsuitable for primary diagnosis. Molecular assays for Lyme disease are best used with other diagnostic methods and only in situations in which the clinical probability of Lyme disease is high.
            PMID: 11257206 [PubMed - indexed for MEDLINE]

            J Infect Dis. 1996 Sep;174(3):623-7.
            Detection of Borrelia burgdorferi DNA by polymerase chain reaction in cerebrospinal fluid in Lyme neuroborreliosis.
            Nocton JJ, Bloom BJ, Rutledge BJ, Persing DH, Logigian EL, Schmid CH, Steere AC.
            Source
            Division of Rheumatology/Immunology, New England Medical Center, Boston, Massachusetts02111, USA.
            Abstract
            A polymerase chain reaction (PCR) assay that detects Borrelia burgdorferi DNA in cerebrospinal fluid (CSF) was evaluated as a diagnostic test for acute or chronic Lyme neuroborreliosis. In one laboratory, 102 samples were tested blindly, and 40 samples were retested in a second laboratory. In the first laboratory, B. burgdorferi DNA was detected in CSF samples in 6 (38%) of 16 patients with acute neuroborreliosis, 11 (25%) of 44 with chronic neuroborreliosis, and none of 42 samples from patients with other illnesses. There was a significant correlation between PCR results and the duration of previous intravenous antibiotic therapy. The overall frequency of positive results was similar in the second laboratory, but concordance between the laboratories and among primer-probe sets was limited because many samples were positive with only one primer-probe set. Thus, PCR testing can sometimes detect B. burgdorferi DNA in CSF in patients with acute or chronic neuroborreliosis, but with current methods, the sensitivity of the test is limited.
            PMID: 8769624 [PubMed - indexed for MEDLINE] Free full text

            This paper shows how, even in untreated patients, it’s hard to get positive PCR results from blood or CSF:
            J Clin Microbiol. 2008 Oct;46(10):3375-9. doi: 10.1128/JCM.00410-08. Epub 2008 Aug 20.
            Validation of cultivation and PCR methods for diagnosis of Lyme neuroborreliosis.
            Cerar T, Ogrinc K, Cimperman J, Lotric-Furlan S, Strle F, Ruzić-Sabljić E.
            Source
            University of Ljubljana, Faculty of Medicine, Institute of Microbiology and Immunology, Zaloska 4, 1105 Ljubljana, Slovenia. tjasa.cerar@mf.uni-lj.si
            Abstract
            Borrelial infection may manifest with a wide range of clinical signs, and in many cases, microbiological findings are essential for a proper diagnosis. This study included 48 patients with a working clinical diagnosis of Lyme neuroborreliosis, 45 patients with a working clinical diagnosis of suspected Lyme neuroborreliosis, and a control group comprising 42 patients with tick-borne encephalitis and 21 neurosurgical patients. The aim of the study was to analyze and compare findings of two PCR methods and Borrelia burgdorferi sensu lato culture results by examination of prospectively collected cerebrospinal fluid (CSF) and blood specimens from patients with clinical features of Lyme neuroborreliosis. Borrelial DNA was detected with at least one of the PCR approaches in 16/135 (11.9%) blood samples and 24/156 (15.4%) CSF samples. Using MseI restriction of PCR products of the amplified rrf-rrl region, we identified the majority of strains as Borrelia afzelii. Borreliae were isolated from 1/135 (0.7%) blood samples and from 5/156 (3.2%) CSF specimens. Using MluI restriction for characterization of isolated strains, Borrelia garinii was identified in all CSF isolates. Our study revealed that different approaches for direct demonstration of borrelial infection give distinct results, that there is an urgent need for standardization of the methods for direct detection of borrelial infection, and that the design of studies evaluating the validation of such methods should include appropriate control group(s) to enable assessment of both sensitivity and specificity.
            PMID: 18716226 [PubMed - indexed for MEDLINE] PMCID: PMC2566093 Free PMC Article

            This paper supports the now well-accepted notion that spirochetes are not usually found in fluid, but prefer tissue.
            Ann Rheum Dis. 1998 Feb;57(2):118-21.
            Detection of Borrelia burgdorferi by polymerase chain reaction in synovial membrane, but not in synovial fluid from patients with persisting Lyme arthritis after antibiotic therapy.
            Priem S, Burmester GR, Kamradt T, Wolbart K, Rittig MG, Krause A.
            Source
            Charité University Hospital, Department of Medicine III, Rheumatology and Clinical Immunology, Berlin, Germany.
            Abstract
            OBJECTIVES:
            To identify possible sites of bacterial persistence in patients with treatment resistant Lyme arthritis. It was determined whether Borrelia burgdorferi DNA may be detectable by polymerase chain reaction (PCR) in synovial membrane (SM) when PCR results from synovial fluid (SF) had become negative after antibiotic therapy.
            METHODS:
            Paired SF and SM specimens and urine samples from four patients with ongoing or recurring Lyme arthritis despite previous antibiotic therapy were investigated. A PCR for the detection of B burgdorferi DNA was carried out using primer sets specific for the ospA gene and a p66 gene of B burgdorferi.
            RESULTS:
            In all four cases, PCR with either primer set was negative in SF and urine, but was positive with at least one primer pair in the SM specimens. In all patients arthritis completely resolved after additional antibiotic treatment.
            CONCLUSIONS:
            These data suggest that in patients with treatment resistant Lyme arthritis negative PCR results in SF after antibiotic therapy do not rule out the intraarticular persistence of B burgdorferi DNA. Therefore, in these patients both SF and SM should be analysed for borrelial DNA by PCR as positive results in SM are strongly suggestive of ongoing infection.
            PMID: 9613343 [PubMed - indexed for MEDLINE] PMCID: PMC1752527 Free PMC Article

            Dogs, not humans. This is important because in dogs, you can do necropsy and inspect the tissues, which is where the spirochete resides, in preference to body fluids:
            J Clin Microbiol. 1997 Jan;35(1):111-6.
            Persistence of Borrelia burgdorferi in experimentally infected dogs after antibiotic treatment.
            Straubinger RK, Summers BA, Chang YF, Appel MJ.
            Source
            James A. Baker Institute for Animal Health, College of Veterinary Medicine, Cornell University, Ithaca, New York 14853, USA. rks4@cornell.edu
            Abstract
            In specific-pathogen-free dogs experimentally infected with Borrelia burgdorferi by tick exposure, treatment with high doses of amoxicillin or doxycycline for 30 days diminished but failed to eliminate persistent infection. Although joint disease was prevented or cured in five of five amoxicillin- and five of six doxycycline-treated dogs, skin punch biopsies and multiple tissues from necropsy samples remained PCR positive and B. burgdorferi was isolated from one amoxicillin- and two doxycycline-treated dogs following antibiotic treatment. In contrast, B. burgdorferi was isolated from six of six untreated infected control dogs and joint lesions were found in four of these six dogs. Serum antibody levels to B. burgdorferi in all dogs declined after antibiotic treatment. Negative antibody levels were reached in four of six doxycycline- and four of six amoxicillin-treated dogs. However, in dogs that were kept in isolation for 6 months after antibiotic treatment was discontinued, antibody levels began to rise again, presumably in response to proliferation of the surviving pool of spirochetes. Antibody levels in untreated infected control dogs remained high.
            PMID: 8968890 [PubMed - indexed for MEDLINE] PMCID: PMC229521 Free PMC Article

            1. vadaisy says:

              Self Skeptic – You’re cherry-picking your studies. Even the Dumler study you cite clearly states that Bb DNA remain AFTER treatment.

              I see you posting on the other thread trying to get Mousethatroared to doubt that she has an autoimmune disease. You want her to believe she has a chronic and seemingly stealth infection. Very slick. A nice way to spread fear and doubt among patients. A nice way to send their business to “LLMDs”, quacks. MTR won’t fall for it.

        2. WilliamLawrenceUtridge says:

          My opinion is to tread lightly and remain open-minded.

          My opinion is to protect patients from themselves and the doctors who exploit them. I just finished Do you believe in magic? by Paul Offit and it had a chapter on CLD. One point it made was just how much money LLMD’s can fleece from their patients. And they claimed the skeptics on the panels had conflicts of interest? Bullshit. What’s more of a COI, a doctor who does research on Lyme disease who uses money to fund their lab, or a doctor who makes millions of dollars, or even hundreds of thousands of dollars every year that goes directly into their pocket?

          1. MAIYYYYYZ says:

            “My opinion is to protect patients from themselves and the doctors who exploit them.”

            Physicians in endemic areas are not seeking more Lyme patients. Their offices are flooded with them. These physicians are making their best efforts to educate the government and medical community of what is working for the benefit of society.

            The physician thrown under the bus in this article was recently flown to China by the Chinese government to assist in the identification of a new strain of Babesia. He is openly requesting that our government work with him on clinical trials with the comprehensive approach he uses.

            ” And they claimed the skeptics on the panels had conflicts of interest? Bullshit”

            Again, please check your facts. Just go to the National Guidelines Clearinghouse web page and they are listed. Read about the anti-trust investigation prompting a 2010 review of IDSA guidelines. There is no conspiracy here. Its just business as usual.

            You seem to have the false pretention that there are all these doctors out there that take people who have mild, non-progressive aches and pains and shove a PICC line in their arm and hope for the best/try not to kill them while bankrupting them. This is not what experienced physicians in endemic areas are doing.

            I think everyone is in agreement that the least amount of antibiotics used for the least amount of time to achieve return of function for the severely ill patient is desirable. Not every person with PTLDS has a persistent infection, but human trials like those I cited show that some may.

            Doctors of Medicine must use their clinical judgment and supporting direct and indirect lab work to sort through these patients and use a comprehensive, individualized approach which may or may not require ongoing antibiotic treatment.

            The studies show that just giving the patients another round of the same antibiotic they previously failed is likely to not provide long term relief for the patient. Only by evaluating for the many other compounding factors that a patient presents with, including other opportunistic or tick born disease, immune dysfunction, widespread inflammation, hormonal disturbances, autonomic dysfunction, sleep disturbances, etc. and combining it with the appropriate and least toxic antimicrobial treatments will these severely ill patients make a long term recovery.

            Clinical trials of a comprehensive approach have not been conducted but physicians like the one cited in this article are calling to government to conduct them. Evidence based practice requires that one take the available research and use it to help make appropriate clinical decision based on experience and patient response.

            You have to also keep in mind that there are many very dangerous therapies for secondary conditions that are rendered unnecessary by a comprehensive approach. I think we both agree we all need to put the best interest of the patient first. We just have a different opinion of how to do so. So maybe we should be asking experienced physicians in endemic areas how they are getting these patients well.

          2. WilliamLawrenceUtridge says:

            Physicians in endemic areas are not seeking more Lyme patients. Their offices are flooded with them. These physicians are making their best efforts to educate the government and medical community of what is working for the benefit of society.

            Sure, but that’s doubtless mostly acute Lyme disease, which definitely exists. I don’t dispute that acute Lyme exists, nobody does. The question is whether the vague symptoms, essentially indistinguishable from chronic fatigue syndrome, has anything to do with the Lyme tick.

            Again, please check your facts. Just go to the National Guidelines Clearinghouse web page and they are listed. Read about the anti-trust investigation prompting a 2010 review of IDSA guidelines. There is no conspiracy here. Its just business as usual.

            Yes, and what was the findings of the investigation? After reviewing more than 1,000 references, the conclusion was “Based on its review of all the evidence and information provided, the Review Panel determined that no changes or revisions to the 2006 Lyme Guidelines are necessary at this time.” Sounds like a tremendous waste of time and money motivated by CLD patients not getting the result they wanted. It sounds like the CLD and related advocates want to see conspiracy or malfeasance in order to avoid hearing the rather sound “No” that they keep getting.

            Doctors of Medicine must use their clinical judgment and supporting direct and indirect lab work to sort through these patients and use a comprehensive, individualized approach which may or may not require ongoing antibiotic treatment.

            Unfortunately the LLMDs appear to be using their clinical judgement (and spurious lab tests) at odds with the evidence, but very much not at odds with lining their pockets and egos.

            Clinical trials of a comprehensive approach have not been conducted but physicians like the one cited in this article are calling to government to conduct them. Evidence based practice requires that one take the available research and use it to help make appropriate clinical decision based on experience and patient response.

            That’d be great if it were being followed, but the point is LLMDs are ignoring the evidence-based practice and instead charging patients large sums of money to give them antibiotics in doses, delivery vehicles and durations that are not supported by the evidence but does show both theoretical and actual evidence of harm to individuals and society.

            I think we both agree we all need to put the best interest of the patient first. We just have a different opinion of how to do so. So maybe we should be asking experienced physicians in endemic areas how they are getting these patients well.

            One thing we distinctly seem to disagree on is the reliability of individual clinical judgement. It’s very, very easy to harm a patient while wishing them well. That’s why we do clinical trials. We should be asking those “experienced” physicians to subject their experiences to test them through clinical trials, and those physicians should stop treating patients if those clinical trials do not support the treatment modalities.

            You’ve already chosen your target and proclaimed a hit without actually firing an arrow. Conclusion follows evidence; if it precedes it, you’re practicing pseudoscience.

          3. MAIYYYYYZ says:

            William, this is actually a well thought out response from you and I appreciate that.

            Well, at least we both agree that conclusion follows evidence.

            Here are my conclusions based on evidence and my own experience:

            1. Tertiary Lyme can persist beyond 28 days of antibiotics

            Evidence:
            http://www.personalconsult.com/articles/LDPersist.pdf

            http://www.ncbi.nlm.nih.gov/pubmed/22922244

            http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3256191/

            http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3636972/

            http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3480481/

            Clinical experience:
            Patients initially do well on an appropriate course of antibiotics and relapse when they are discontinued.

            2. In the absence of a comprehensive approach, further antibiotic therapy may not be effective.

            Evidence: I cited and reviewed these studies above. Here is another article reviewing these studies: http://www.ilads.org/files/position2.pdf

            Clinical Experience: There are definitely flaws to these studies, however, I have personally seen a patient fail to respond well to further antibiotic therapy when co-infections and other issues were not addressed.

            3. These cases respond to further antibiotic therapy when a comprehensive approach to treatment is used.

            Evidence: none published that I know of, although the physician cited in this article is one of many using this approach and urging the government to begin clinical trials.

            Clinical Experience: personally witnessed patients presenting with severe chronic Bb infection effectively manage or completely resolve new onset seizure disorder, crippling arthritis, autonomic dysfunction, first degree heart block, etc. Such symptoms can be objectively measured.

            Further research should be directed towards using a comprehensive approach to managing persistent Bb infection as well as identifying the mechanisms of persistence so more effective treatments can be developed.

            This is my opinion. I am not claiming to be an expert. I am not claiming to be right. But my opinion is based on research and experience. There is not one research article that conflicts with my opinion that I am aware of. All research that I am aware of actually supports my conclusion, and it seems to be in line with many treating physicians.

            If there is going to be something to change my conclusion, it is going to be research. If there is research that I am not aware of, feel free to enlighten me.

          4. WilliamLawrenceUtridge says:

            Patients initially do well on an appropriate course of antibiotics and relapse when they are discontinued.

            Patients also do well on placebo and relapse when the placebo is discontinued. Is saline therefore a treatment for CLD?

  55. MAIYYYYYZ says:

    You know what is so interesting about this thread? The idea that there is no evidence that PTLDS, or CLD, is infection mediated is outdated. The conclusions of the author are outdated. It is no longer in accordance with what the CDC says, and they actually removed that statement from their web page. I am merely educating you on current research and the consideration that the CDC and NIH are giving this topic based on recent conferences and the evidence listed on their web page. I am also educating you on the opinion of treating physicians in endemic areas.

    I have also stated my personal opinion and backed it with extensive research per your request (William). In response, there has only been one person that cited a research article for me, but failed to actually comment on it. As if I should make his point for him (Chris).

    If you have an opinion, state it. Support it with research (Weing). That’s what scientists do.

    If you just want to passionately defend your hero author by attacking me (Sawyer), you are only embarrassing yourself. Don’t worry, I am sure the author is competent enough to further defend her position that there is NO evidence that PTLDS is infection mediated despite the extensive evidence I provided, evidence cited on the CDC web page, and recent statements made by members of the NIH (Harriet).

    1. weing says:

      “If you have an opinion, state it. Support it with research (Weing). That’s what scientists do.”

      I am clinician, not a researcher, who is waiting for answers from researchers who are much wiser. My opinion is only supported by lack of evidence.

      1. Self Skeptic says:

        @Weing,
        Please see my (rather long) post, above, in response to your request for evidence.

  56. WilliamLawrenceUtridge says:

    MAIYYYYYZ – what treatment do you think appropriate to offer someone with confirmed Lyme disease?

    What treatment do you think appropriate to offer someone with chronic Lyme disease?

    1. MAIYYYYYZ says:

      First, let me define CLD in the context of this discussion:

      1. Illness present for at least one year (this is approximately when immune breakdown attains clinically
      significant levels).
      2. Have persistent major neurologic involvement (such as encephalitis/encephalopathy, meningitis, etc.)
      or active arthritic manifestations (active synovitis).
      3. Still have active infection with B. burgdorferi (Bb), regardless of prior antibiotic therapy (if any).

      In the case of prior treatment, that means the treatment was inadequate and we are talking about infection mediated PTLDS.

      In the case of no prior antibiotic treatment, that means illness for at least one year since that is when the immune system begins to break down and the infection becomes much more refractory to treatment.

      So now I will ask you a question:
      Based on the evidence presented on this thread by myself and others, are you now convinced that CLD, as defined above, is likely to exist despite Harriet Halls conclusion in the article?

      Because without being on the same page in this fundamental question, there is no sense in moving forward. This simple concept drives both treatments and research, which is why it is so very important for science to keep asking.

      1. weing says:

        “First, let me define CLD in the context of this discussion:”

        You mean re-define.

        From the 4th paragraph of Dr. Hall’s post

        “Lyme is a multi-systemic illness, and may affect every part of the body causing fatigue, stiff neck, headaches, light and sound sensitivity, tinnitus (ringing in the ears), anemia, dizziness, joint and muscle pain, brain fog, tingling, numbness and burning sensations of the extremities, memory and concentration problems, difficulties with sleep (both falling asleep and frequent awakening), chest pain and palpitations and/or psychiatric symptoms like depression and anxiety.”

        All subjective symptoms. Arthritis is something I can verify by exam. Totally different animal.

        1. MAIYYYYYZ says:

          “You mean re-define. ”

          No, I do not mean re-define. She simply stated some symptoms of Lyme in general and ended with “doesn’t this sound like everyone?”

          CLD as defined above is exactly what I meant.

          Have you not learned by now that I say what I mean?

          What about obvious dystonias, seizures, autonomic dysfunction, 20 year olds bound to a wheelchair, various degrees of heart block, paralysis, crippling arthritis such that a young mother cannot take care of her children in the absence of radiologic evidence of arthritis and negative autoimmune testing? What about the devastating effects of tertiary Lyme disease that resolve with antibiotics only to relapse over, and over, and over when they are discontinued? What about patients who do not respond to symptomatic treatments in the absence of antibiotic therapy and continue to spiral into a devastating neurodegenerative process right before your eyes?

          Does that sounds like everyone too?

          And then you test the patient and they have a positive PCR for Lyme despite previous 28 days of antibiotics. Does that sound like everyone?

          And what, Weing, do you do with this patient?

          I don’t think you have seen one before. And I sure as heck don’t believe you live anywhere near an epidemic area. But if you get one, I would encourage you to consult with one of the real experts, which consist of physicians in epidemic areas that cannot turn these patients away and send them to a specialist for every symptom. This is the well-being of their community we are talking about. And if you don’t believe the physicians, working in the trenches, seeing these patients day in and day out, who are you going to believe?

          1. MAIYYYYYZ says:

            Weing,

            And, because I am truly interested in your experience with arthritis that you describe as “I have personally seen persistent and treatment resistant Lyme arthritis”

            What do you do?

            And do these patients have other symptoms of Lyme, or do they just have arthritis?

            And what is their response to treatment?

          2. WilliamLawrenceUtridge says:

            What about obvious dystonias, seizures, autonomic dysfunction, 20 year olds bound to a wheelchair, various degrees of heart block, paralysis, crippling arthritis such that a young mother cannot take care of her children in the absence of radiologic evidence of arthritis and negative autoimmune testing? What about the devastating effects of tertiary Lyme disease that resolve with antibiotics only to relapse over, and over, and over when they are discontinued? What about patients who do not respond to symptomatic treatments in the absence of antibiotic therapy and continue to spiral into a devastating neurodegenerative process right before your eyes?

            So…self-reported, primarily subjective symptoms unconfirmed by objective tests that resolve only in the presence of active, unblinded treatment?

            And your only evidence of Bb infection is PCR? The CDC appears to believe that this is a sub-optimal test and apparently not useful for chronic Lyme specifically.

          3. weing says:

            Sorry to inform you but you are redefining the author’s post. I suggest you read what is written before commenting on it. From your rambling, I can tell you don’t know the difference between arthralgia and arthritis. I happen to practice in Connecticut. I see a few cases of Lyme every year. I’ve even hospitalized patients for temporary pacing for complete heart block due to Lyme. I guess I’m not that good because I had a specialist put in the pacemaker instead of doing it myself. But at least I know my limitations.

          4. MAIYYYYYZ says:

            William, I am done responding to your posts because they are increasingly stupid. Heart block and autonomic dysfunction are not subjective and I have no idea what you are even talking about with unblinded treatment and I don’t think that is actually a word. I stated PCR because that is what Weing indicated he is interested in with human studies.

            Weing,

            Sorry to inform you that is the technical definition of CLD. Look it up. I got sick of citing everything I said because no one is reading what I provide links to anyway. For example, the PCR studies I cited for you were copied and pasted from what I already cited many posts up and you continued to insist that such studies didn’t exist. Did you ever get around to reading them?

            So please, tell me about your experience treating Lyme and why you feel, based on your own experience, that persistent infection from long standing Lyme cannot exist beyond 28 days of antibiotics, and/or why further antibiotic therapy is inappropriate in cases that present like chronic infection?

            Because I can tell you about my experience. Many of them. How about this one: The case of the ID doc who only treated his patients with 28 days of antibiotics, yet put his beloved family member on 6 months worth of high dose antibiotic therapy followed by an open ended lower dose for “maintenance” after she relapsed from complete discontinuation of antibiotics.

            When physicians are treating family members different than the public, there is a problem.

            When those who write the guidelines that recommend 28 days of treatment end up under an anti-trust investigation due to conflicts of interests with the insurance companies, there is a problem.

            When people have strong passionate opinions where there is conflicted research, there is a problem.

            When legislation is being passed so that physicians can use clinical judgment regarding a disease, there is a problem.

            So please, enlighten me on what your experience is with these patients? How do you get these patients well?

          5. WilliamLawrenceUtridge says:

            Part of the problem appears to be that CLD doesn’t have an official definition; LLMDs seem to believe it is “whatever ails my patients”, rendering it worthless. The CDC definition of post-Lyme says it is basically indistinguishable from CFS, another wastebasket diagnosis for vague symptoms with no known objective cause. What seems to help patients get better is time – not drugs.

      2. WilliamLawrenceUtridge says:

        3. Still have active infection with B. burgdorferi (Bb), regardless of prior antibiotic therapy (if any).

        How do you determine if this is the case?

        So now I will ask you a question:
        Based on the evidence presented on this thread by myself and others, are you now convinced that CLD, as defined above, is likely to exist despite Harriet Halls conclusion in the article?

        Nope, I consider it to be a hypothetical based on lab and monkey studies without evidence to justify this assumption be considered a fact. Confirm this, be able to separate CLD patients from healthy controls or non-CLD patients with similar symptoms using objective criteria, then you’ve got a fact worth working from.

        So far, you haven’t shown me any evidence that long-term antibiotic treatment (which I assume is the modality you will use) is effective at treating CLD. In fact, previous efforts have resulted in no difference between placebo and active treatment. The only response I have seen from the CLD community is to move the goalposts (“treatment wasn’t long enough” or similar objections).

        1. MAIYYYYYZ says:

          William,

          “How do you determine if this is the case?”

          Well, in the human studies I provided that you did not read, they determined it with clinical judgment and supporting serologic testing, PCR, and/or culture.

          “Nope, I consider it to be a hypothetical based on lab and monkey studies”

          Maybe you should read the rest of the research I cited for you.

          “The only response I have seen from the CLD community is to move the goalposts (“treatment wasn’t long enough” or similar objections).”

          I do not believe you are listening then. And since you are not reading the research I post, this is not surprising.

          What about a comprehensive approach? What about looking at a patient whose severe progressive symptoms abate while on antibiotics and relapse while off of them and asking why?

          1. WilliamLawrenceUtridge says:

            Well, in the human studies I provided that you did not read, they determined it with clinical judgment and supporting serologic testing, PCR, and/or culture.

            Well, clinical judgement is basically the equivalent of a doctor eyeballing it and guessing; given the vagueness of the symptoms, I don’t know how helpful this would be. And <a href = "http://www.nejm.org/doi/pdf/10.1056/NEJMra072023"experts, whom I defer to, don’t seem to find the other tests convincing.

            What about a comprehensive approach? What about looking at a patient whose severe progressive symptoms abate while on antibiotics and relapse while off of them and asking why?

            What about clinical trials that gave patients antibiotics and placebos and saw equivalent improvements for both groups?

          2. MAIYYYYYZ says:

            William,

            “What about clinical trials that gave patients antibiotics and placebos and saw equivalent improvements for both groups?”

            Which is why I said COMPREHENSIVE APPROACH. Look it up.

            “Well, clinical judgment is basically the equivalent of a doctor eyeballing it and guessing; given the vagueness of the symptoms”

            Which is why I said “supporting serologic testing, PCR, and/or culture.”

            Maybe one day you will stop brainwashing yourself by reading other peoples opinions and look at the data for yourself. You are so close-minded it is unbelievable, and you are so uninterested in the facts that you don’t even check the information I provide for you.

            If you get this disease, you are going to be screwed with that attitude.

          3. WilliamLawrenceUtridge says:

            Which is why I said “supporting serologic testing, PCR, and/or culture.”

            None of which are currently valid for anything but research, right?

            Maybe one day you will stop brainwashing yourself by reading other peoples opinions and look at the data for yourself.

            I’m never going to do that, to become informed enough to contribute meaningfully to the literature I would need an MD or PhD specializing in infectious disease, and that would take at least a decade I would rather spend doing something else. Fortunately, there are lots of infectious disease specialists who are already experts and they’re mostly unconvinced. And why would I trust a random internet commenter over them?

            You are so close-minded it is unbelievable, and you are so uninterested in the facts that you don’t even check the information I provide for you.

            Not closed-minded, merely uninterested. You’re aiming your points at the wrong person, I wouldn’t even begin to understand most of the research you point to. That’s why I keep defering to real experts. Who are unconvinced that chronic Lyme disease is a real thing. Maybe you should try convincing them instead.

            If you get this disease, you are going to be screwed with that attitude.

            If I get Lyme disease, I hope I get the bulls-eye rash so they know what it is, and a short course of antibiotics clears it up. Fortunately I’m not in an area where the Lyme tick is endemic, and I don’t spend much time outside (nature hates people, that’s why Lyme ticks exist) so I am at low risk. But thank you for your concern.

  57. MAIYYYYYZ says:

    Weing, I am a bit confused on your position.

    This statement:

    “I may not know what this supposed syndrome is, but I know that the studies show what it is not. It is not a chronic infection.”I stand by what I said. There are no human studies. I told you what would convince me, PCR studies in humans. When I find such studies, I will be up to date on the research.”

    And this statement:

    “I didn’t need to be convinced of this possibility. Treatment failures are always possible and I have personally seen persistent and treatment resistant Lyme arthritis. You deal with them when you find them. It’s the nebulous PTLDS that needs to be proven by PCR.”

    Might has well been written by two different people.

    Going from ” I know that the studies show what it is not. It is not a chronic infection” to ” I have personally seen persistent and treatment resistant Lyme ”

    Then from ” I told you what would convince me, PCR studies in humans” to “I didn’t need to be convinced of this possibility. It’s the nebulous PTLDS that needs to be proven by PCR.”

    So, I have a question for you:

    When you see “persistent and treatment resistant Lyme” in your practice, do you “deal with them when you find them” by telling them “I may not know what this supposed syndrome is, but I know that the studies show what it is not. It is not a chronic infection.”

  58. paul says:

    Evidence based medicine has proven chronic Lyme disease in mice, dogs, horses, and monkeys…. This work was done at the universities of UC Davis, University of Texas, and Tulane University. This is relevant! If this were any other host of infectious diseases then we would accept this as proof of concept. But when you throw in the word “Lyme” common sense is lost. I actually believe the chronic Lyme disease story is very complicated, but there is plenty of evidence to prove it in the medical literature. As far as the CDC studies to disprove CLD exists, come on, really…. They in no way, shape or form, replicate the long term treatment that Chronic Lyme patients are getting… I could have told you those faulty studies would have failed from the beginning… And by the way, lack of response doesn’t disprove the existence of chronic Lyme disease, it only shows lack of benefit in the two groups based on the define protocol.
    As this MD and former athlete who was diagnosed with likely ALS over 3 years ago and had not been able to do simple exercises or enjoy his kids will tell you, CLD does exist. Well years of antibiotics later and understanding the mold toxin piece, I won my life back and I am angry. I am angry because of the close mindedness of the medical community that nearly took my valuable life away. If it were in your hands, I would not have seen my children graduate or get married… Well, I did win my single tennis match the other day (and many others in the last 6months). And fortunately for this MD, he did very well in school and he learned something apparently you didn’t; and that is, if you open your mind, you will open doors… Unfortunately, if people like yourself would stop spending all your energy in the denial phase and truly and whole heartedly read the entire body of work regarding Lyme in the medical journals (including the methods sections) you may have a change of heart, or at least believe that there needs to be a better assessment, and not always the angle to disprove but maybe the angle to prove. The problem with physicians, their egos that stand in the way of progress…..

    1. WilliamLawrenceUtridge says:

      People aren’t mice, dogs or horses, or even monkeys (we’re apes) and we have radically different immune systems. For instance, SIV, the monkey equivalent to HIV? Completely harmless in other primates, it’s human equivalent is just deadly to us.

      As an MD, why don’t you stop insisting we open our mind and start work on the empirical evidence needed to test your theory? I’ll happily change my mind if you can change the CDC or infectious disease community’s mind. You might also want to think about scaling back efforts by activists to legislate a solution as it tends to drive away researchers and erode good faith.

      1. paul says:

        You are mistaken that we are radically different… but not worth an argument. I would suggest that you do a thorough scan of the medical literature and there are many numerous cases that support CLD, and many of these cases were published by the IDSA docs that so oppose the idea of CLD. Maybe you can also see who the editors of these glamorous medical journals are and then you might also understand that your name is more important than the quality of your work, when trying to publish. I will briefly remind you of the example of the ruthless nature of the academic elite regarding peptic ulcer disease and the crazy doctors that believed it was infectious… There were many people that went through needless Billroth surgeries to cure them of this disease that was “definitely” not infectious…. Count the number of patients that died on the operating table due to this needless surgery, or their lives ever changed with complication after complication due to the surgery, and the huge waste of healthcare dollars…. If you think this is this only example of such mistakes in medicine, your eyes are wide shut…. Don’t even talk about empirical BS… I suspect you are in the medical field and you would have let people like myself and other die because of this supposed high ground that you practice…. Do you not realize how difficult and how much money it takes to prove something in medicine!!! And how many studies that were that were proof of one thing become discredited a few simple years later. When you or your family get really ill, come to me and I will treat you solely on evidence based grounds… Maybe you will change…. And by the way 1 out of every 4 prescriptions are written in the US for an off label treatment. So I guess there are a lot of docs throwing out the evidence based medicine that they so believe is the only way to practice (they assume they are smart enough to know that it is ok for them to treat empirically). Darn ego gets us again…

        1. WilliamLawrenceUtridge says:

          You don’t seem to understand my repeated point – I don’t know the literature. I can’t know the literature, I don’t have the training and am uninterested in acquiring it.

          Note that the researchers who proved recurrent ulcers were caused by bacteria produced some truly convincing, well-conducted science that demonstrated their hypothesis was true? And that the practice changed from “acid control” to “antibiotic treatment” in somewhat less than a decade once the evidence was in? So – convince the experts with good evidence. Don’t protest how hard done CLD patients are on the internet, don’t complain how mean and rigid doctors are. Prove it.

          How much ego does it take to insist you absolutely know the cause of fatigue and joint pain, versus admitting that you’re not sure and are forcing yourself to wait before insisting on certainty?

          All the bluster of ego, bias, conspiracy, indifference and the like merely distract from the fact that the research simply isn’t convincing yet. HIV went from mysterious illness in a stigmatized population to recognized condition very quickly on the basis of solid evidence; perhaps you could try mimicking their success?

  59. Florinda Friend says:

    You want evidence that Chronic Lyme Disease exists. Come to my home and watch my husband carry our 17 year-old daughter up the stairs to bed because she is in so much pain she can not climb the stairs herself. Go through the “medicine box” on our kitchen counter and review the 10-15 pills a day my daughter takes just to function. Talk to my daughter about her constant physical pain, her struggle to obtain passing grades due to her memory loss and alienation from her peers due to her illness.
    There is no scientific evidence of Chronic Lyme Disease because the scientific information available is outdated and no funding has been allocated to prioritize new Lyme research.
    Open your eyes and look at the patients not the outdated paperwork.

    1. WilliamLawrenceUtridge says:

      That’s not evidence that CLD exists. That’s definitely evidence that your daughter is suffering, not that it is caused by Bb infection through a Lyme tick bite that has become occult. That’s rather the point – nobody denies her suffering, merely that the puted cause is unproven and therefore treating it is premature (and dangerous).

      How do you know your daughter’s symptoms are caused by Lyme, rather than say, a congenital disorder, a nutrient deficiency, polio, stroke, radiation poisoning, and so on?

  60. KAM says:

    I am only able to scan the above article due to health. I came down sick in 2001. I lost count on how many specialist I saw. I was too sick to work or do household chores or walk or sit or stand or read or do simple math, etc etc etc.

    My test results by many docs showed that I was a walking picture of health. Only I was not able to walk. A couple of docs thought anti depressants were the answer.

    One doc told me to just pick on symptom as most docs are not able to treat someone that is multi symptomatic (SP?)

    Another told me to see a pysch. I saw a pysch and he told me it was medical and to see a medical doc.

    AFter 2 yrs I saw a doc who knew enough to use the igenex lab. I had lyme tests at qwest or labcorp but the doctor’s told me they had lost the results when I asked for them. When I asked to be retested I was told that it was not necessary because there is no lyme here. (That did not make sense to me….where is here…does he think I don’t leave the house or town or state? )

    I had the test results confirmed by a lyme specialist and also saw a doctor at Samsun Clinic to confirm or rule out any thing else. The doctor at Samsun Clinic told me that many docs do not believe in lyme disease so be prepared.

    I have did my own research before deciding whether or not to take abx for treatment.

    I learned that most lyme support group leaders were seeing results within their group with abx. I also learned that most needed to pay out of pocket for treatment and it was more than just taking abx.

    If it is not lyme, then what is it? I dont’ care what you label it. I would just like to be able to see my grand children, go for a walk in the forest, read a novel, do my own household chores, cook meals, and travel.

    EAsy for so many doctor’s to say, I dont’ know what you have, but it isn’t lyme. Have a good life.

    I felt like the kid who goes to the teacher and says I can’t read this. The teacher responds with but you have eyes don’t you and your vision tests are good.

    Not my problem. Go away.

    1. WilliamLawrenceUtridge says:

      I had the test results confirmed by a lyme specialist and also saw a doctor at Samsun Clinic to confirm or rule out any thing else. The doctor at Samsun Clinic told me that many docs do not believe in lyme disease so be prepared.

      That’s rather the point though, Lyme specialists aren’t justified in their treatments. The confirmation by a Lyme “specialist” isn’t worth much, but since you didn’t read the article you might not be aware of that fact. Since there’s no diagnostic test for CLD, you can’t really “rule out” anything – and the symptoms tend to be so vague that the cause could be nigh-anything, most patients could be diagnosed just as easily with chronic fatigue syndrome or fibromyalgia or one of the other catch-all syndromes that have no etiology.
      The reason doctors don’t believe in chronic Lyme disease is because the evidence simply isn’t there. Doctors believe in Lyme disease, with its indicative signs and symptoms.

      I have did my own research before deciding whether or not to take abx for treatment.

      Where did you do your research? Which journals did you search through, which articles did you read? Or did you just look on the internet and decide “yup, that’s me”?

      If it is not lyme, then what is it? I dont’ care what you label it. I would just like to be able to see my grand children, go for a walk in the forest, read a novel, do my own household chores, cook meals, and travel.

      That’s rather the point – they don’t know what it is, so the label of “chronic Lyme disease” is premature (as is the treatment). Everyone would like you to be able to undertake those tasks – the point is that antibiotic treatment hasn’t been shown to enable you to do them.

      Not my problem. Go away.

      Um…you are the one who decided to comment here. Nobody is keeping you on this page, there’s a big internet out there – feel free to explore it. Apparently it’s mostly spam (not porn).

  61. Wow. What an ill informed opinion you have. Sad, sad, sad!

    1. WilliamLawrenceUtridge says:

      That’s pretty vague, what part are you talking about?

  62. Dama Lewis says:

    To the author:

    I would love for you to sit in a room with my father, his ACA rash and the European scientific research he has gather that pertains to his particular strain of Borrelia and tell him how he must not have Lyme disease because 1) he did not test positive by CDC standards and 2) there is only one strain of Bb in this country so testing beyond the standard commercially available tests is not necessary. I’d love for you to tell him that all the doctors who told him he didn’t have Lyme, but some other progressive neurological disorder that would disable him were right and his LLMD, who has gotten him healthy and kept him out of a wheelchair, is wrong. I’d like you to explain to him how, now that he has been treated for Lyme, his Western Blot tests light up like a Christmas tree. I’d like you to explain to him how he must not have Bartonella, even though his infection was confirmed by lab testing.

    You scoff at the claim that Dr. Horowitz has treated 12,000 patients for Lyme disease. Where do you live? I have had three of my friends’ children come down with Lyme disease this year alone. Almost every home, every family in my town has been affected by Lyme disease in some way.

    Maybe so many people wouldn’t be seeking out help from LLMDs if the medical establishment got its act together and started paying attention to patients instead of just recycling the same old flawed research over and over again. When launching into individual research on Lyme disease, it doesn’t take long to realize that all the good research was done prior to the early 90s and tapered off dramatically when the Lymerix vaccine was released and the catastrophe that was the Dearborn conference occurred.

    Instead of continuing to tell patients they are crazy and vilifying the doctors trying to help them, why not be part of the solution?

    1. WilliamLawrenceUtridge says:

      I’d love for you to tell him that all the doctors who told him he didn’t have Lyme, but some other progressive neurological disorder that would disable him

      Does this neurological disorder relapse and remit? Even horrible disorders like MS or lupus can wax and wane, which could explain how he got out of his wheelchair.

      You scoff at the claim that Dr. Horowitz has treated 12,000 patients for Lyme disease. Where do you live? I have had three of my friends’ children come down with Lyme disease this year alone. Almost every home, every family in my town has been affected by Lyme disease in some way.

      How many have the characteristic bulls-eye rash?

      Instead of continuing to tell patients they are crazy and vilifying the doctors trying to help them, why not be part of the solution?

      If the solution is “further high-quality research”, I’m on board. If the solution is “just treat patients on the assumption of etiology”, I’m not. If the solution is “more low-quality research that accepts Lyme infection as a given rather than a premise to be tested”, I’m not.

  63. Westfalia says:

    Wow. I can’t believe this. 300,000K are getting Lyme each year, 20% are not getting well from the CDC/ ISDA guidelines. There is a problem here…that is a lot of people.

    I am one of the 20%. I had positive labs for Lyme, Babesia, and Bartonella. I had these infections for a year and a half before I was diagnosed. I had lost all of my quality of life. I think the illness is being underestimated here, it’s not mild.

    I lost my mind… couldn’t read and comprehend, couldn’t follow conversation. I lost my body…bone crushing fatigue, and pain..lots of it. It was everywhere, my joints, muscles, bones, my head. My life was not worth living.

    That is the case for most of us who go on to do long term antibiotics. Life is not worth living.

    I have my life back. I have my mind, I’m no longer in pain, and I have energy to live life. I did not do IV, most don’t.

    I know that this paper is all about “evidence based medicine”… well, I have all of the evidence I need. Long term antibiotics have given me my life back.

    I think that all of this debating this subject needs to stop, and I think some action is in order. If there is a better way to get us well.. please find it.

    There isn’t a single one of “us” that wouldn’t have wanted a better way. Desperate times call for desperate measures.

    1. WilliamLawrenceUtridge says:

      Something gave you your life back. You don’t know what. You took antibiotics, then you felt better. This is post hoc ergo propter hoc. Perhaps it was the antibiotics, perhaps not. That’s rather the point.

  64. RedKat says:

    Well, let’s see. About 100 years ago, what we now call “Multiple Sclerosis” was called “Faker’s Disease.” It’s “sufferers” were labeled fakers, malingerers, hypochondriacs, fakers, etc.

    It took decades before the medical establishment began to recognize it as a real condition. It was eventually recognized it as a true illness long before there was any kind of test to show its’ presence.

    Even now, there is no definitive lab test for MS. The current diagnostic standard, which is primarily a clinical diagnosis, requires some kind of MRI-visible brain lesion in the white matter, but it’s clear that many people develop MS before any lesions show up. These unfortunate folks have to wait for a MRI-visible lesion before they can get any treatment to slow their disease progression.

    My point is that just because a patient can’t PROVE she or he has MS, doesn’t mean they don’t have it. It’s despicable that people are angrily accusing Lyme patients of making things up, or blaming the aches and pains of aging unnecessarily on Lyme Disease. That’s a stunningly blind and ignorant statement to make to people who, in some cases, are critically ill.

    The difference between the doctors who called MS sufferers “fakers” and those who saw it as a real disease and began studying it and trying to help the patients is one single factor: THEY BELIEVED THE PATIENTS, even in the absence of medical “proof”.

    Anyone who takes the position, as this writer and many commenters do, that something does not exist until it’s PROVEN to exist, will never make new discoveries. Nor will you be of any comfort or help to people suffering from something we don’t yet understand.

    It is only those with intellectual curiosity to question the status quo, open their minds to new possibilities, and assume that patients are telling the truth who will identify new illnesses, grow to understand those illnesses, and find treatments for suffering patients.

    If you don’t know what a patient is suffering from, for goodness’ sake, stop accusing them of making things up and just admit you don’t know!! Let someone else figure out what’s wrong with them and stop trying to block them! I know the Chronic Fatigue Syndrome and Fibromyalgia sufferers will join me in this plea.

    1. WilliamLawrenceUtridge says:

      Can one of you guys let me know which message board drove you all over here? I don’t care that much, I’m just curious.

      It took decades before the medical establishment began to recognize it as a real condition. It was eventually recognized it as a true illness long before there was any kind of test to show its’ presence.

      Not quite. It took decades before there was an adequate research base to demonstrate the etiology and pathophysiology of MS. Even now I don’t think the test is particularly good, particularly given the mutability of MS’ symptoms.

      It’s despicable that people are angrily accusing Lyme patients of making things up, or blaming the aches and pains of aging unnecessarily on Lyme Disease. That’s a stunningly blind and ignorant statement to make to people who, in some cases, are critically ill.

      Who is accusing you of “making things up”? I’ve consistently pointed out that there is not enough convincing evidence that what people call “chronic Lyme disease” is actually related to Lyme tick bites, or Bb. I don’t blame the patients, I blame the unethical doctors who are claiming certainty where none yet exists. CLD “patients” also do themselves a disservice by insisting their symptoms are definitively caused by a single etiological agent; what happens if you are wrong, and you end up blowing out an abdominal aneurysm?

      The difference between the doctors who called MS sufferers “fakers” and those who saw it as a real disease and began studying it and trying to help the patients is one single factor: THEY BELIEVED THE PATIENTS, even in the absence of medical “proof”.

      I would venture it’s more that it was the gradual accumulation of evidence and pursuit of multiple clinical, diagnostic and etiological avenues, leading to a single, well-validated conclusion, that made the difference.

      Anyone who takes the position, as this writer and many commenters do, that something does not exist until it’s PROVEN to exist, will never make new discoveries. Nor will you be of any comfort or help to people suffering from something we don’t yet understand.

      By corollary, anybody who takes the position that something exists before it is proven to exist, runs a considerable risk of misdiagnosing patients and dying of an untreated condition (or overtreated noncondition – like that lady who died of antibiotic-resistant MRSA that accessed her body through permanent central line put in by a LLMD). And science is often discomforting; it may one day prove that people diagnosed with CLD are actually sick with an alternative infectious agent, or some other common pathogen.

      If you don’t know what a patient is suffering from, for goodness’ sake, stop accusing them of making things up and just admit you don’t know!! Let someone else figure out what’s wrong with them and stop trying to block them! I know the Chronic Fatigue Syndrome and Fibromyalgia sufferers will join me in this plea.

      I’ll point that right back at you – in the absence of a diagnostic test or other clear empirical indication of uniting pathology or etiology, stop accusing doctors of denying your symptoms or being unwilling to listen. Stop insisting it is due to CLD and instead just admit that you don’t know.

      It might also help if you, and CFS and FM sufferers also admit that there is almost certainly some proportion of those diagnosed who truly have a purely psychogenic condition. The problem that frustrates everyone, doctors included, is figuring out which ones they are. All three are wastebasket diagnoses, picked more or less at random, when no other explanation can be found. It would be great to move people out of that wastebasket and into concrete, empirically validated categories. It’s a shame that nobody has done so to date.

    2. Harriet Hall says:

      MS turned out to be a real disease. Here are some others that didn’t:
      Neurasthenia
      Green sickness
      Dropsy
      Flux
      Heart sickness
      Miasma
      Sweating sickness
      Worm fit
      Chlorosis
      Ecstasy
      King’s evil
      Puerperal exhaustion
      Siriasis
      Winter fever
      Railway spine
      Apoplexy
      Shell shock
      Imbalances of the humors
      The vapors
      Some of these were reclassified, some were mixtures of various conditions, some were nonexistent.
      Time will tell whether Chronic Lyme goes in the wastebasket of history like these diagnoses did.

  65. annette says:

    I see that a Harriett Hall was the poster of this article, but am I correct in assuming that she is also the original author?
    My comment is specifically for the author who wrote this scathing opinion on the (non)existence of CLD, the ridiculous and uninformed OPINION that there is no scientific evidence proving CLD, the patients suffering from it, the doctors who believe in it and those LLMDs who are courageous enough to treat it.
    To the author: If you so strongly and most vehemently believe in what you say is the truth and that a better “scientific based” title for the article by Suzy Cohen should rather be “Feel Bad? It Couldn’t Be Chronic Lyme
    Disease because CLD Is Nonexistent Until Proven Otherwise”, then I challenge YOU to be the one to prove otherwise. Attach a tick infected with Lyme and the other co-infections you mentioned to yourself, leave it there for a minimum of 24 to 48 hours (the time the CDC states that it takes for the tick to actually infect you), and wait a period of 2 to 4 years, which is more often than not the amount of time that CLD sufferers take to finally get diagnosed. By then you should be showing signs of seemingly unrelated symptoms. Symptoms that could and most often are attributed to other ailments. Then and only after that time has passed, and you have seen doctor after doctor, specialist after specialist, been labeled as a hypochondriac or needing psychiatric evaluation, THEN have yourself tested for Lyme disease.
    By that time you ARE CHRONIC. You will be screaming for a “proper” diagnosis and treatment for your pain, your chronic fatigue, your neurological issues and the plethora of other symptoms that we CLD sufferers struggle with daily.
    You seemed very quick to explain to your readers who Suzy Cohen is – and Dr. Horowitz – and even Dr. Oz, with so much contempt in your tone that I wonder what exactly is your motivation for such character bashing of these people.
    You told us who they are and their credentials – Who are you?
    Debates exist of all kinds. Even scientific ones – what makes you so close-minded and unable or unwilling to expand your knowledge of what does or does not actually exist?
    My “scientific challenge” to you is very sincere. If you are so 100% sure of the nonexistence of CLD, you wouldn’t hesitate for a second to infect yourself, go without treatment until you are very symptomatic – and I promise you that you will be – and then with or without diagnostic testing YOU PROVE That CLD Does Not Exist.
    Fair enough?
    I don’t have proof readers or editors to “clean up” my comment. So forgive me if I have a grammatical error or two or I have used a past participle incorrectly. I found that so petty to point out when such an important topic such as CLD was the main focus or your article.

    1. WilliamLawrenceUtridge says:

      Even if your “trial of one” took place, what would it demonstrate? Not all people with actual Lyme, including the bulls-eye rash, go on to develop symptoms, or even need treatment.

      What would you say if this trial took place – but the patient got better without long-term antibiotic treatment? Would you change your mind? If not, then perhaps you could see why others would find it equally unconvincing.

      Empathy, pity and appeals to emotion are not substitutes for evidence.

  66. MAIYYYYYZ says:

    William,

    You have consistently ignored that tertiary Lyme can exist beyond 28 days of antibiotics. The research supports this. The NIH and CDC are interested in this. This is called CLD.

    Why are you so against this idea, such that you will get on here every day and tell people that have recovered from CLD that they may have MS or Lupus or something?

    What is your deal?

    1. WilliamLawrenceUtridge says:

      Caution must be taken to distinguish between chronic Lyme disease and post Lyme syndrome, which is apparently not chronic Lyme disease. CLD is protean and encompasses people with absolutely no indication of ever having been bitten by a tick, let alone being infected by Bb.

    2. vadaisy says:

      Most likely his “deal” is that he is opposed to patients falling for a bunch of lunatic quack “LLMDs” who will diagnose anyone who enters their office space with Lyme disease or a multitude of infectious diseases.

  67. MAIYYYYYZ says:

    William,

    Specifically, I am referring to commends like these:

    “How do you know your daughter’s symptoms are caused by Lyme, rather than say, a congenital disorder, a nutrient deficiency, polio, stroke, radiation poisoning, and so on?”

    “Does this neurological disorder relapse and remit? Even horrible disorders like MS or lupus can wax and wane, which could explain how he got out of his wheelchair.”

    Not only do I find those comments to be inappropriate and insensitive but to answer your question those conditions can be ruled out by a physician.

    When people tell you their experience, you say:
    “That’s not evidence that CLD exists”

    No, but this is:
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3636972/

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3480481/

    http://www.personalconsult.com/articles/LDPersist.pdf

    http://www.ncbi.nlm.nih.gov/pubmed/22922244

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3256191/

    To which you respond:
    ” I wouldn’t even begin to understand most of the research you point to.”

    Its no wonder we have been going in circles.

    You are as bad as Weing going from:

    ” I know that the studies show what it is not. It is not a chronic infection” to “I have personally seen persistent and treatment resistant Lyme ”

    Then from ” I told you what would convince me, PCR studies in humans” to “I didn’t need to be convinced of this possibility. It’s the nebulous PTLDS that needs to be proven by PCR.”

    1. vadaisy says:

      You’re jerking people around and misinterpreting their comments. No wonder patients are chronically confused.

    2. WilliamLawrenceUtridge says:

      Not only do I find those comments to be inappropriate and insensitive but to answer your question those conditions can be ruled out by a physician.

      Well, I’m not a physician, and you are free to not read them. You’re wasting your time talking to me, I’m not sure why you bother. I don’t treat CLD, I don’t interact with CLD patients, and I have no power to change treatment or even funding decisions. So why are you here?

      Your studies of spirochetes in glass dishes and monkeys aren’t convincing to me, and your theoretical papers of how Bb could evade the immune system and antibiotics are not proof that it does so.

      1. MAIYYYYYZ says:

        William,

        ” You’re wasting your time talking to me, I’m not sure why you bother”

        Let me remind you that you engaged in this debate with me. I respond to your responses to what I write. Since you no longer would like to engage in dialog with me, I will stop responding to you.

        vadaisy,

        I simply cite literature and challenge peoples comments I do not agree with. I guess thats jerking people around in your world.

        1. vadaisy says:

          Chronically misrepresenting what others say is not challenging their opinions or research, it is distortion – nothing less.

        2. WilliamLawrenceUtridge says:

          Let me remind you that you engaged in this debate with me. I respond to your responses to what I write. Since you no longer would like to engage in dialog with me, I will stop responding to you.

          You may note that my history here precedes the publication of this article by several years, and I’m responding to what you write as well. So long as you continue insisting on certainty where none is warranted, I will probably continue to comment.

          I simply cite literature and challenge peoples comments I do not agree with. I guess thats jerking people around in your world.

          I simply cite the skepticism from major bodies and nearly everyone who isn’t an LLMD or patient and point out that neither group has a convincing body of data yet. I don’t consider that jerking around either, I consider it context and challenge, one that is often missing in the various echo chambers of the internet.

    3. vadaisy says:

      You offer links to citations of journal articles, and some posts mention how compassionate the “LLMDs” are in that they treat their patients with respect and true concern. Do you realize that one of your links, your oft cited “LLMD” has been convicted in a court of law for putting a loaded gun to the head of a child so as to ‘teach’ him a lesson? We’re not talking about the need for a weapon to be used against a criminal, but rather a child psychiatrist using a unique form of discipline – a loaded gun. Such compassion in a physician I hope to never know.

  68. MAIYYYYYZ says:

    “CLD is protean and encompasses people with absolutely no indication of ever having been bitten by a tick, let alone being infected by Bb.”

    Nope. I defined CLD for you already. That is the medically accepted definition of CLD. Look it up.

  69. MAIYYYYYZ says:

    Here CLD defined again. This is the actual definition as used by “LLMDs.” It is people that have a confirmed infection with Bb that fit the following guidelines:

    1. Illness present for at least one year (this is approximately when immune breakdown attains clinically
    significant levels).
    2. Have persistent major neurologic involvement (such as encephalitis/encephalopathy, meningitis, etc.)
    or active arthritic manifestations (active synovitis).
    3. Still have active infection with B. burgdorferi (Bb), regardless of prior antibiotic therapy (if any).

    Look it up. This may be a subgroup of those with PTLDS. PTLDS is a “syndrome,” and syndromes can have multiple causes or be idiopathic. But I do know this is the definition of CLD, and I do know there is a lot of evidence to support its existence.

    I think some of the confusion and inconsistent comments are actually due to not fully understanding the definition of these terms that are being thrown around.

    1. weing says:

      @M,
      We are talking about two different things. I am talking about patients that do not meet the criteria that you elaborated. First of all, I have not seen patients that meet your criteria for CLD. Maybe I am lucky, but they have been treated early and most of them responded to the initial therapy. Rarely have I had to switch antibiotics. Do the patients that Dr. Horowitz treat meet the criteria for CLD? I have no idea. Is it possible that there are unfortunate patients with tertiary Lyme? Of course. Is it chronic Lyme when they have Bartonellosis or Babesiosis? No.

      1. MAIYYYYYZ says:

        Weing,

        Yes I was thinking we were talking about different things based on your comments. This is the definition ILADS physicians use, which Dr. Horowitz is a part of.

        That is why he urges physicians to evaluate for Bartonellosis and Babesiosis with these patients. For Bb to persist, these patients are immunocompromised and coinfections are always present.

        Anyway, Vadaisy and William have made it clear I am no longer welcome as part of this thread, and since they are the regulars, I will bow out.

        1. WilliamLawrenceUtridge says:

          For Bb to persist, these patients are immunocompromised and coinfections are always present.

          “Always”? With that kind of 100% correlation, demonstrating this should be trivial. Has anyone demonstrated this fact?

    2. WilliamLawrenceUtridge says:

      The fact that this is the definition used by LLMDs is a bit of the problem. What is needed is a definition acceptable to most or all researchers, that can be used widely to drive research, and can be used to determine if some sort of objective indication of postinfective metabolism, or even ongoing infection, is an issue.

      Good luck with that. Perhaps it would be helped if patients stopped trying to force their changes through politics and death threats.

    3. WilliamLawrenceUtridge says:

      Also, I forgot to mention this previously, but your criteria are a bit problematic. The first one is basically saying “the presence of vague symptoms for at least one year”, since the symptoms themselves are vague. The second is merely a list of symptoms again, neurological symptoms but symptoms none the less. And the third is the clincher. How do you determine there is still active infection? The tests are unvalidated, they’re not accepted as valid evidence of infection, correct? So this central item, upon which the rest really hinge because without proof of the infectious agent, without proof that it is caused by Lyme and Bb infection, they are just symptoms. Without knowing the etiology, how do you know how to treat them? The central question, again, is how do you know it is caused by Bb? If your test is questionable, you don’t really have anything but a list of vague symptoms. You don’t know whether you need antibiotics, or surgery, or steroids, or a toxoid, or a monoclonal antibody, or chemotherapy, or, or, or.

  70. Dottie says:

    I have read through some of the posts here and for the most part what I see is what I would have said 5 years ago before I became the next statistic. I am CDC positive – diagnosed not by one but five different labs. They couldn’t all be wrong. I was also diagnosed with babesia, mycoplasma. Rocky mountain spotted fever equivocal. I never saw a tick, although I was a dog rescuer and picked up lots of dogs with ticks. Thing is CDC was so good about proliferating that lyme is not in Texas so I didn’t think a thing about it. Five ticks from my property all deer ticks and four harbored borrelia in their guts. One had rickettsia. But you see they were part of imagination as well as the deer I have hit here because the CDC says we don’t have deer nor deer ticks here. This disease has robbed me of my life. These are NOT normal symptoms associated with daily life -they are debilitating beyond wildest imagination. Look at Dr. Max Appels’ work – his swarm song – won a nobel peace prize for it. It was on his research about borrelia burgdorferi. Dr. Kerry Clark in Florida just completed a study where he isolated borrelia burgdorferi in lone stari ticks. Nope it wasn’t borrelia lonestari, another disease carrier that there is no studies being done.

    The longer the denial of a bacteria’s capability to hide itself in your immune system (lymph nodes proven by validated medical publications studies) and other systems in the body the longer research will be halted. Sorry the fairy tale is up for some of you now – mainstream medicine doesn’t have the answers – no one does. This is a horror story beyond your wildest imagination. Gigs up too many people now have it now they we have been sicking our head in the sand for something like 30 years living this threat to expand and march into all 50 states.

    1. Harriet Hall says:

      I couldn’t find anyone named Max Appel in the list of Nobel Prize recipients, neither in the Peace Prize list nor in the Physiology/Medicine Prize list where I would expect to find an award for research on bacteria. I think you are mistaken. There is an MJ Appel who has done Borrelia research on dogs, but I couldn’t find that he had done any studies on humans. He claims to have shown persistence of Borrelia, but I couldn’t find any studies showing that prolonged antibiotic treatment was effective in dogs, or that dogs experience anything similar to the symptoms of chronic Lyme disease in humans. Animal research is a first step, but it always must be confirmed in humans before we can use the findings to guide human treatments.

  71. erin oconnor says:

    This writer has never experienced the hell of having CLDS. I was so sick that I could barely get out of bed and the pain was so excruciating I considered suicide. I found a doctor who believes in long term antibiotics and it was a miracle. After a few months I was completely different. I am glad most people have a better understanding of Lyme than this writer. Just because you can’t do a test to prove something, doesn’t mean the disease isn’t real. Using her logic, if you are suffering from a new disease that doesn’t have a name, an accurate test or treatment yet, you are not sick. This article is insulting to the Chronic Lyme sufferers. HH stay out of the debate until you know what we are talking about.

    1. WilliamLawrenceUtridge says:

      Just because you think your antibiotics treated your illness doesn’t mean it was caused by Lyme (nor does it mean that the antibiotics were the cause for your improvement). Maybe, maybe not. The certainty is out of step with the quality of the evidence.

  72. Tom T. says:

    I guess I’m one of those easily deceived rubes who fell for a LLMD “quack.” I graduated at the top of my class in undergrad school and was managing a fast-paced retail business when I could suddenly not function. I spent 8 months going to various specialists and was essentially told I was depressed. My cognitive function and fatigue were the most significant symptoms, but instead of giving up and living on disability, I searched out a local LLMD and was cured after a year and a half of treatment that most of you would debunk. I still have ongoing joint pain, but have returned to work. Chronic Lyme is real but it can be defeated. The shame is that I had to sell my house, had my car repossessed, and went bankrupt while paying for this treatment.

    1. WilliamLawrenceUtridge says:

      A year and a half is a long time. Many conditions, neurological, psychological, musculoskeletal, arthritic and infectious, will resolve spontaneously over 18 months.

      Irrespective what I think of LLMDs and CLD, I really have tremendous sympathy for Americans due to their lack of a true health care system funded by the federal government. I wonder if quackery would decrease if real MDs were not seen as unduly expensive?

  73. RedKat says:

    In the 80′s, the CDC said only gay men and Haitians get AIDS, so the rest of us don’t have to worry about it.

    Lesson: Don’t believe everything a gov’t health official says about a poorly understood medical condition.

    For decades, ulcer sufferers were told to de-stress and take antiacids. Dr. Barry Marshall was ostracized and dismissed as a crank when he began research to find a bacterial cause. It was nearly 20 years after he proved gastric ulcers were caused by h. pylori that the medical establishment overcame its’ false belief in the “fact” that bacteria can’t survive in the stomach. He eventually won a Nobel Prize for his work.

    Lesson: Some widely accepted “facts” are really just expert opinions mistaken for facts. Those who question the status-quo aren’t all quacks. Some are visionary geniuses who are eventally recognized with awards and admired for their years of toil under ridicule.

    A U.S. president died from a flesh wound from an assassination attempt because his prestigious, highly regarded physician was adamant that Germ Theory was false. (It was “unproven” and so the unbelieving physician stuck his unclean finger in the wound to fish out the bullet. The president died of sepsis a month later.)

    Lesson: New, revolutionary ideas rarely come from the stratospheres of a scientific field. They tend to come from the front line (such as family physicians) or the upstarts, or the young, those who are unencumbered by the dogma of the establishment.

    So, while the NIH, CDC, and IDSA block research to help prove the “chronic Lyme” claim true, we suffering patients are forced to donate our own scarce funds to research to try to prove it. In the meantime, taxpayer funds go to the “Lyme Deniers” to do self-affirming studies that prove nothing and do not help patients. The privately funded studies are indeed proving persistent Lyme infection, but the “establishment” is so entrenched, that these studies are ignored or excused away.

    First, the Lyme Deniers said we had to prove there were living, reproducing spirochetes in so-called chronic Lyme patients. So someone did. Now, the Lyme Deniers are saying, “So what. You have to prove they cause active infection or illness.” When did the opinions of a few become the ridiculously high (moving) bar of proof for others to overcome? I don’t think they’ll ever be convinced, no matter what proof is offered. Their minds are closed.

    This is not just a profesional disagreement. Differing opinions and even scientific evidence are shouted down & suppressed by those in positions of influence and power. Patients have been yelled at, insulted, kicked out of a doctor’s practice, told to see a psychiatrist, and even sent home to die untreated. Doctors who dare to treat us as individuals are slandered, ostracized, and even persecuted.

    It’s a mind blowing experience for a patient to spend years going to the best medical institutions in the world only to be sent home with a shrug or a misdiagnosis every time, and then to go to a family physician in a humble, non-descript office where prescriptions for long term antibiotics finally get that patient well. To say we don’t exist is like saying the earth is flat.

    1. weing says:

      “So, while the NIH, CDC, and IDSA block research to help prove the “chronic Lyme” claim true, we suffering patients are forced to donate our own scarce funds to research to try to prove it. ”
      I don’t get it. Shouldn’t the research be aimed at figuring out what it is, instead of proving it true? What if it’s not true? What if it’s many different things, each with their own specific treatments? You will have wasted all that money trying to prove it is true.

    2. WilliamLawrenceUtridge says:

      In the 80′s, the CDC said only gay men and Haitians get AIDS, so the rest of us don’t have to worry about it.

      Currently HIV is seen as the cause of AIDS, based on a lot of really, really good research. These findings apply equally irrespective gender, age, sexual orientation, height, weight, etc.

      Also, how is this comparable? Your claim appears to be “The CDC stigmatizes people based on their (sexual) identity”; as far as I am aware, CLD is primarily a middle-class preoccupation and stigma doesn’t really apply to the groups that believe themselves to be afflicted.

      Also, Dr. Marshall’s discovery of the bacterial cause of ulcers was rapidly adopted once his evidence was published. It was high-quality evidence that was obviously effective in humans. The missing piece is still good evidence. Ditto the germ theory of disease.

      First, the Lyme Deniers said we had to prove there were living, reproducing spirochetes in so-called chronic Lyme patients. So someone did. Now, the Lyme Deniers are saying, “So what. You have to prove they cause active infection or illness.” When did the opinions of a few become the ridiculously high (moving) bar of proof for others to overcome? I don’t think they’ll ever be convinced, no matter what proof is offered. Their minds are closed.

      That sounds about right, except for the “so what”. The bar was always “prove this occurs in humans”, but medical research always requires incremental steps in proof, the convergence of a large volume of evidence on a single conclusion. Much like a journey must begin with a single step, it must end with a single step. But that final step is critical because it is the one that reaches your destination. Without it, the whole trip seems rather pointless. So, build your research step by step, carefully, using multiple lines of evidence. If you’re pursuing a real phenomenon, that last step will arrive and you will have added to the body of medical knowledge.

      And yes, research funding really is quite desperate these days. Seems like the answer is to do the best research you can, not to skip steps.

      1. RedKat says:

        You missed the point. I said nothing of “stigma” or “sexual identity.” Those topics are irrelevant to this discussion. And you seem to have pulled the “middle class” comment out of the ether.

        My point is that the CDC will stand up and spout fiction to avoid panic. They value calm over truth. They lied about AIDS and they’ve lied about Lyme. I used to believe whatever they said. I now realize I can’t trust what they say. Their agenda is not to help me get well.

        It was 17 years between Dr. Marshall’s discovery and when the Royal College of Physicians in Australia published guidelines indicating bacterial infection in patients with suspected ulcers. I’d hardly call this “rapid.” For nearly 2 decades, he was wrongly criticized and mocked, and yet he was later awarded a Nobel Prize. It seems we have learned nothing from this example.

        I personally refuse to just curl up and die while waiting a couple decades (or more!) for all the “right steps” of irrefutable proof to be produced through controlled studies. I already know antibiotics help my infections but you want me to wait for some study that convinces you first?

        Patients must have the choice to risk the “dangerous” antibiotics or live in the hell of untreated or insufficiently treated Lyme. The ones with only mild pain might choose to go untreated, at least for a while. But those with serious or life threatening symptoms will surely choose the “dangerous” antibiotics. Who are you to make that decision for me? It’s between me and my doctor and my well informed consent.

        1. WilliamLawrenceUtridge says:

          My point is that the CDC will stand up and spout fiction to avoid panic. They value calm over truth. They lied about AIDS and they’ve lied about Lyme. I used to believe whatever they said. I now realize I can’t trust what they say. Their agenda is not to help me get well.

          Are you sure you are not projecting our current certainty, based on years of research, backwards to a time when we simply didn’t know? Are you sure you aren’t indulging in a little hindsight bias? Particularly when projecting your own personal certainty on CLD when science is still pretty far from definitively demonstrating that CLD is due to occult infection? It’s easy to look back on previous research blind alleys and uncertainties and call it waste, completely ignoring the fact that you need to wander down those blind alleys to realize they aren’t going anywhere. It’s a bit like the winner of the lottery criticizing the losers for not just “picking the right numbers”.

          Also, their agenda is not to pander to you, it is to deliver the best possible scientific guidance regarding health decisions and disease control. In part this is an economic decision, because money, time and scientists are not unlimited resources. Giving extra resources to CLD research means money, time and people taken away from something else, possibly something much more prevalent and deadly, such as diabetes, cancer, heart disease, AIDS, etc. It’s a shame we can’t throw billions at every single disease in existence, but it’s also reality.

          It was 17 years between Dr. Marshall’s discovery and when the Royal College of Physicians in Australia published guidelines indicating bacterial infection in patients with suspected ulcers. I’d hardly call this “rapid.”

          To go from a raw, inchoate starting point to elucidating an unlikely, unappreciated and unusual bacterial infection to the actual realization (not that “antibiotics cure ulcers”, but that “antibiotics prevent recurrence”; as a cure, antibiotics weren’t much better than conventional care) is pretty quick. The careful work required does take time, but you are paid back in certainty.

          I personally refuse to just curl up and die while waiting a couple decades (or more!) for all the “right steps” of irrefutable proof to be produced through controlled studies. I already know antibiotics help my infections but you want me to wait for some study that convinces you first?

          1) Until that proof exists, you have no idea whether your symptoms are caused by the Lyme tick or not.

          2) I don’t care, you don’t have to convince me, you have to convince infectious disease experts. I’m just an irrelevant stranger on the internet that finds your arguments unconvincing and is willing to spend time challenging it. Possibly a dramatic change from the pro-Lyme echo chamber you might have previously posted on.

          3) It kinda does affect other people though, because long-term antibiotic use without proof is just destroying the efficacy antibiotics that are needed by other sick people.

          Who are you to make that decision for me? It’s between me and my doctor and my well informed consent.

          …except it’s not. Those antibiotics might be needed one day by me or my family, but it turns out that a couple hundred “chronic Lyme” patients decided to turn their bodies into antibiotic-resistant bacteria farms and poof – there’s an epidemic of MRSA culling the hospitals.

          It’s not just about you.

        2. Sawyer says:

          Regarding the ulcer analogy:

          Do CLD folks realize that employing the lottery fallacy is one of the number one reasons they AREN’T being taken seriously by other doctors and scientists? Even if you have a legitimate evidence on your side, you seem to be bending over backwards to look like quacks by the constant references to Marshall/AIDS/Semmelweis. Please stop doing this if you want to gain more traction with the mainstream medical community!

    3. vadaisy says:

      In the 80′s, the CDC said only gay men and Haitians get AIDS, so the rest of us don’t have to worry about it.

      Lesson: Don’t believe everything a gov’t health official says about a poorly understood medical condition.

      In the late 90′s, the President of ILADS suggested that gay men are gay because they are suffering from an infection of Lyme disease. He considers homosexuality a disease, a sickness.

      Lesson: Don’t believe a word they tell you.

  74. LivingLyme says:

    I would find these arguments amusing if it were not for the fact that misdiagnosed lyme almost cost me my life. If people spent more time working on the science while spending less time on worthless hypothesis and discourse that leads to nowhere, we would really have and edge on Lyme. Until you live through this mess, I guess it is fun to splatter paint the internet with ideas that may be supported by science, however, they still leave unanswered questions, many with health in an unknown balance, and only stoke a fire that does not burn for answers, rather polarizes everyone who has an interest in Lyme – both professionally and for survival. Get it in your heads, the human race and all of our iEverything still has not truly cracked the code of Lyme. Although I agree with science, that is also why I call BS on Lyme. If the current troubleshooting method doesn’t work, devise a new one! Please don’t waste time talking about how some people don’t follow the rules. People are dying from Lyme and perhaps Lyme doesn’t follow our rules.

    1. WilliamLawrenceUtridge says:

      If people spent more time working on the science while spending less time on worthless hypothesis and discourse that leads to nowhere, we would really have and edge on Lyme…If the current troubleshooting method doesn’t work, devise a new one!

      What do you propose instead? Don’t you have to pursue blind alleys to find out which ones lead somewhere? I mean, if we already knew the answer, we wouldn’t need to do the research.

      Please don’t waste time talking about how some people don’t follow the rules. People are dying from Lyme and perhaps Lyme doesn’t follow our rules.

      In which case it would be an absolutely vital addition to our knowledge, the discoverer of a replicable, hitherto-unrecognized path by which Bb infection can lead to CLD would be of tremendous value and interest to the scientific community.

      A meta-question however; what if it’s not Lyme? It might not be. If you never, ever ask the question “what if it’s not Lyme”, what happens if it’s not actually Lyme?

    2. Harriet Hall says:

      “People are dying from Lyme”

      Death from Lyme disease itself is rare, and chronic Lyme disease is not known to have killed anyone. In contrast, IV antibiotic treatment for CLD has resulted in at least one documented death.

      1. RedKat says:

        There are plenty of documented cases of death from CLD, but you seem not to be aware of them. There are also the examples where a doctor who doesn’t believe in CLD will not put “Lyme Disease” on the death certificate. They’ll put “heart failure” or “suicide” on it, as those appear to be the 2 most common direct causes of death for Lyme sufferers. The CDC does have a list of “official” recorded deaths from Lyme Disease.

        Just because you don’t know of something doesn’t mean it hasn’t happened. You will not see something if you insist it doesn’t exist.

        1. WilliamLawrenceUtridge says:

          There are plenty of documented cases of death from CLD

          [citation needed]

          If someone thinks they have CLD, puts a gun in their mouth and pulls the trigger, the cause of death is suicide, not CLD.

  75. RedKat says:

    Ms. Hall,

    I respectfully do not understand the point of your comment with the list of “diseases” that supposedly do not exist. Some of the ones on your list are actual conditions that have been renamed (“Shell shock” is better known as “Post Traumatic Stress Disorder” or TBI, “Traumatic Brain Injury” or the condition still being defined – shall we call it “multiple concussion brain disease”?) or turned out to be symptoms of more than one underlying condition, such as Dropsy.

    Yes, some of the “illnesses” on your list turned out not to be identifiable illnesses as described. But some could just as well be real, yet still unidentified. You acknowledge MS turned out to be real and your comment saying that time will tell if CLD ends up in the wastebasket of history. Please remember we are talking about human beings being thrown in the wastebasket, not just medical terminology. Isn’t it possible, given the complete absence of proof for the argument that CLD “doesn’t exist”, that it just might actually exist? Do you really think hundreds of thousands of patients are all just crazy? Have you ever spent any time with some of these patients? I can only conclude that you have not.

    How will you feel when (“If”, I’m sure you’d say) CLD is proven true? Will you feel betrayed by those whose word you accepted at face value? Will you feel any remorse for contributing to the ongoing destruction of lives of thousands of suffering tick borne disease patients?

    I encourage you to try to prove Suzy Cohen’s story true. Set aside your bias and truly look at the patients and the evidence. It’s overwhelming if you’ll actually acknowledge it. Talk to Nick Harris, Eva Sapi, Dr. Bertholtz at UCDavis, Dr. Breitschwerdtz at NCState, Dr. Kerry Clark at UNF, etc. etc. Go visit Dr. Horowitz and sit in his waiting room for a few days talking to patients. Ask them to tell you their stories. Better yet, read “Cure Unknown” by Pamela Weintraub. Go talk to her so you’ll realize she’s a smart, credible science writer. Please don’t accept the vague, sweeping dismissals you’ve quoted in your blog post.

    1. Chris says:

      “Ms. Hall,”

      Maybe it is because I grew up as an Army brat, but I believe not using the title she earned, “Dr.” to be disrespectful, plus it belittles her education and accomplishment. If you cannot abide to acknowledge that she went to medical school, passed the qualifying boards, went through residency, then call her by her other earned title from the US Air Force: Colonel Hall.

      For the rest, I really don’t care. The list of diseases were for historical context, if you want to learn about one that was not listed and how it was “cured” I suggest you watch the movie Hysteria. Though I would ask that you actually read the article more carefully and click on the embedded links for more information.

      1. RedKat says:

        Chris -

        Looks like I would have been better off not trying to show respect at all. I addressed my comment to Ms. Hall because I knew her name only as Harriet Hall. That is how she is listed as author of the article and the comment I replied to.

        Shall I be offended that you did not address ME by the correct title? Or shall I let that go knowing that you aren’t aware of it?

        I’m disappointed in your insulting reply. My comments are solely about the issues at hand, and yet you feel the need to insult me. I am in a fight for my life with 3 devastating infections that have turned my and my entire family’s life upside down. I doubt you would ever be so insulting to a cancer patient, and yet you did not hesitate to be so to a Lyme patient. Can you see why Lyme patients are often testy?

        My story is like many others… healthy, active, busy. I was devastated by a mystery illness that dragged on for years. After being given steroids for a misdiagnosis, I went downhill very quickly, a common thread in chronic Lyme Disease stories. Steroids are a disaster for Lyme patients. They suppress the immune system (including those antibodies that are needed for the required -for-diagnosis CDC testing protocol) and allow the bacteria to get entrenched.

        I was extremely ill and had complications that could have killed me in a multitude of ways, such as with a stroke, heart arrythmia, respiratory distress, or spleen rupture. And yet over a dozen excellent doctors were stumped. All possibilities were considered and excluded. I had to figure out for myself that I had tick borne disease after unreliable testing failed me.

        There are thousands of people with stories like me, who end up in an LLMDs office in pain and in shock at how we were treated by doctors who are supposed to heal us. We’ve been snapped at, insulted, criticized, dismissed, misdiagnosed, or sent away with insufficient treatment or even no diagnosis and no treatment. I’m an optimist myself, but now I understand why some chronic Lyme patients give up in despair and take their own lives.

        My Babesia and Bartonella are real problems for me. I seem to have treatment-resistant Babesia (already documented in medical literature) and have recently relapsed with Bartonella (also documented in medical literature). Any of these illnesses can make you miserable all by themselves. Combined, they’re geometrically, if not exponentially worse. But even these potentially severe illnesses are not taken seriously.

        Over half of chronic Lyme patients have these and/or other coinfections. No one has studied combinations of these infections, so how can anyone say what they don’t do? Why can’t our medical establishment acknowledge that the presence of coinfections could explain many of the Lyme treatment failures that become Chronic Lyme Disease?

        I am unable to work in what was previously a successful and prestigious career. I don’t know if I will ever regain my health and my active lifestyle. I must also deal with the stress of a medical establishment that denies my illness and makes blanket generalizations about Chronic Lyme Disease that bear no resemblance to my reality.

        Until you know what this is like, please tread carefully in how you speak to people who are suffering as I do. Instead of judging people you’ve never met, I encourage you to go meet some of them and learn their stories.

        I was curious as to why Dr. Hall would acknowledge the MS story and its precedent of denying an illness while insulting the sufferers, but not acknowledge that the same thing could be happening to Lyme patients today. She listed illnesses that aren’t “real”, but some of them are indeed real and have just been renamed or clarified as symptoms with an underlying cause. And why a military officer aand doctor would say “Shell Shock” isn’t real mystifies me.

        I am sure that being a Colonel and a Doctor, she does not need you to explain her comments for her. I look forward to her own reply.

        1. Chris says:

          Here is an idea, click on her name at the top of this page.

          “Until you know what this is like, please tread carefully in how you speak to people who are suffering as I do. Instead of judging people you’ve never met, I encourage you to go meet some of them and learn their stories.”

          You know, I wish I had time and energy to read your long screeds, much less write so copiously. But, hey, I have things to do. And at least I have read Col. Hall’s article.

        2. Chris says:

          Rats, they changed the link in the new design. Go to the top of the page, place your mouse the the words that say “About SBM”, then go down to where it says “Editors”, you’ll get a menu with her name on it, click on that:
          http://www.sciencebasedmedicine.org/editorial-staff/harriet-hall-md-assistant-editor/

        3. vadaisy says:

          RedKat, Your misrepresentation of comments made by Dr. Hall, Chris and others is quite telling. The gross misrepresentations force one to question all of your perceptions and opinions, and they seem quite skewed, distorted, even delusional. Dr. Hall is not “insulting the sufferers” of any disease. Take a step back and try approaching her article with a bit of reason and logic. Perhaps a dictionary would help.

        4. WilliamLawrenceUtridge says:

          I am in a fight for my life with 3 devastating infections

          That reminds me of the lady who died because of the devastating infection of her central line by antibiotic-resistant bacteria caused by long-term antibiotic use for chronic Lyme. She fought for her life, and died, and we don’t know if she was even getting treatment that might have cured her or simply led to her death.

        5. WilliamLawrenceUtridge says:

          Over half of chronic Lyme patients have these and/or other coinfections.

          According to who? The testing companies offering unvalidated tests as long as you’ve got money in your pocket?

          Instead of judging people you’ve never met, I encourage you to go meet some of them and learn their stories.

          How will that help? Similar to doctors not being encouraged to treat family and friends, or divorce cases involve a neutral third party in the form of a judge, while compassion can lead people to investigate a disease, it can also lead them to distort the literature.

          The important thing is a scientific body of knowledge that is convincing to experts, irrespective the amount of compassion or indifference they feel towards patients.

    2. WilliamLawrenceUtridge says:

      Please remember we are talking about human beings being thrown in the wastebasket, not just medical terminology.

      The claim that compassion dictates we must treat without studying is a terrible, terrible justification. Compassion dictates we give the most effective treatment we can, with the least adverse effects possible. It is false compassion and they deserve better.

      How will you feel when (“If”, I’m sure you’d say) CLD is proven true? Will you feel betrayed by those whose word you accepted at face value? Will you feel any remorse for contributing to the ongoing destruction of lives of thousands of suffering tick borne disease patients?

      Believers in Lyme disease, and other health issues with unknown etiology, like to pretend or read into criticisms the idea that they are based on contempt or spite. It’s not. It’s the unfortunate recognition that public resources, knowledge, time, health and life are all limited and must be carefully managed to the benefit of the most people. Lacking knowledge of what is truth and what is not means we must chose the most promising avenues of research and intervention in the face of imperfect science. It’s frustrating for everyone. Patients don’t seem to realize that advocacy in the form of threats and politics undercuts their credibility and support among the very people who are responsible for testing their claims. It’s self-injury.

      1. RedKat says:

        I never said treat without studying. I desperate want more studies into the realities of Lyme Disease and the incredible complexity of the bacteria. Those who study the bacteria have universally called for more study.

        My point is that I cannot wait for decades of study. Lyme and Babesia and Bartonellla are destroying my life right now, and it’s clear that antibiotics are treating them. It is unethical to withhold a treatment that works, even if it’s anecedotal (thousands of anecdotes, at that), when there are no other alternatives to help me.

        Lyme is FAR more likely to kill me than antibiotics are.

        1. weing says:

          “I desperate want more studies into the realities of Lyme Disease and the incredible complexity of the bacteria.”
          You want more studies to be done to show that CLD is real? Others want more studies to be done showing that Santa Claus is real. I have no problem having studies done to try to figure out what, so called, CLD is and how to treat it. But that is different from what you want.

  76. RedKat says:

    The vaguely described “randomized studies” used to deny additional treatment were a farce before they started. All they proved is that people sick with Lyme for 5-10 years failed to get well after a delayed 2nd month of antibiotics. Most patients in the studies guessed correctly if they were on antibiotics or a placebo, so the researchers dismissed the fact that over half of the antiobiotics group felt relief of fatigue as a placebo effect.

    This conclusion reveals their complete bias against ongoing infection and the benefit of extended treatment. How can anyone ignore improvement followed by relapse in addition to such high accuracy of guessing which group they were in? Both are significant. And yet they announced to the world that these studies showed “no benefit.” But isn’t improvement followed by relapse completely consistent with ongoing infection needing further treatment? These researchers seem to live in an alternate logic universe that makes no sense to me.

    Those patients probably needed 1-2 years of antibiotics. Of course 1 or 2 months didn’t cure them. These studies have all the appearance of a set up to create an excuse to deny those who dared to criticize the “experts” on Lyme Disease. Why? I cannot fathom the reason(s).

    There are NO studies proving the current 28 day treatment “works” all the time as claimed. There is NO scientific evidence proving people are cured. There are NO studies proving that ongoing symptoms are solely because of immune dysfunction. There are NO studies on how multiple simultaneous tick borne diseases might behave differently than Lyme alone; prior studies carefully excluded anything that wasn’t just Lyme.

    These Lyme denying experst have only opinion and contempt for patients, even as they insist on “science” and “evidence.” How did such a small group’s opinion become “fact” and why do so many blindly accept their lack of any evidence to prove their opinion? It’s sad to me that a clinical diagnosis become almost medical heresy, as if lab tests had developed god-like accuracy. Patients and patients’ response to treatment must be part of the evidence in “evidence based medicine.”

    I can’t think of any basis by which one could state that our illness “Does not exist!” Those who do sound like the prestigious doctors of the day who insisted germs did not exist.

    Some say that because long term antibiotics can cause harm, they must not be used. And yet they’re used without a second thought for MRSA, TB, Hansen’s disease, Brucellosis, and even acne. They’re used for people with biofilm based chronic infections in their lungs or in their implants.

    I’ve heard of the same unvalidated story over and over of the single patient who died due to an infection or blood clot from an IV line for anti-Lyme treatment. If it is true, it is a tragedy. I’m sure there are also some stories of people who were misdiagnosed with Lyme. But what about the countless people who’ve died from untreated Lyme Disease? That is a far greater tragedy.

    Why can’t we allow the Lyme patients to give their informed consent and let them decide instead of patronizingly deciding for them? I know from experience that patients can feel that antibiotics are helping them, but then they are labeled “drug seeking” when they’re cut short and ask for more. I can assure you that the vast majority will choose the risk of treatment over the hell that is untreated Lyme. Why not just treat the patient until the patient is well? Doctors seem to have forgotten their mission. Pleasing each other has become a much higher priority than healing their patients.

    There are scores of studies showing persistance after treatment (in spite of what Mr. Baker says). There are also tens of thousands of patients who are living, walking proof that there is persistence after treatment, and that long term treatment makes the difference.

    No physician should be forced to prescribe long term antibiotics for Lyme. But I believe that both standards of care must to be taught and doctors must explain both to their patients. Access to a physician who will give long term treatment must not be denied by a physician who doesn’t agree with it nor by an insurance company that doesn’t want to pay for it. The patient must be able to participate in a decision about which treatment to pursue, just as oncologists do with cancer patients now.

    To deny patients the information and the choice is unconscionable, especially when other possibilities have been excluded.

  77. Sawyer says:

    Based on the last few days of comments, I think it’s becoming clear that the defining symptom of CLD is necrotizing thread-itis.

  78. Harriet Hall says:

    Many of the commenters failed to register the last paragraph of my article, so I will repeat it here:
    “The belief that chronic Lyme disease exists is not supported by the evidence. It is a disservice to patients with unexplained symptoms to paste that label on them and treat them with potentially harmful long-term antibiotics. They are suffering, and they deserve our compassion and the best that science-based medicine has to offer, not bogus treatments by charlatans or well-meaning but misguided LLMDs.”

    I do feel very sorry for the sufferers, but ignoring good science is not the solution. Considerable misunderstanding of the evidence and of the scientific method itself is demonstrated here. We are now up to 781 comments thanks to the true believers, and they have boosted the web presence of SBM. Now, when I google “chronic Lyme”, my article appears in the number 2 spot, right after the Wikipedia article. I thank the commenters for that, and I hope it will steer a few people away from misguided LLMD’s. And it might steer a few new readers to SBM. Those who are convinced they have CLD will not profit, but hopefully some of the others will be able to hear and understand our message about the importance of good science.

    1. RedKat says:

      “The belief that chronic Lyme disease exists is not supported by the evidence.”

      But it is!! You must first be willing to acknowledge and look at the evidence. I have seen one list of 70 published case studies and research studies (I looked at every one of them to ensure they were real) showing persistence. And of course there is the endless evidence offered by tens of thousands of patients.

      “…ignoring good science is not the solution.”

      I agree completely. And I continue to be baffled as to why this author and others continue to ignore the good science showing persistence, while defending the weak science used to justify unreliable testing and incomplete treatment.

      I also continue to wonder how deeply flawed and inconclusive studies can be labeled “good” and accepted as fact in the first place. I wonder if sometimes “Peer Review” is just medical speak for “Rubber Stamp.”

      There’s no proof that PTLDS is real. There’s no proof that residual symptoms go away in 12 or 18 months. Yet both theories are blindly accepted and defended as if they were facts. The science behind the belief that 28 days of abx always cures Lyme doesn’t actually exist. (Some PTLDS proponents have actually admitted this). These are all just opinions, which are hotly contested by some of the people they’re supposed to describe.

      It appears that this author and supporters of this article are unwilling to change their minds regardless of argument or evidence. You’re probably still thinking there are only 25-30,000 cases of Lyme a year. I would have guessed that the desire for irrefutable proof should lead you to want to resolve the many unanswered questions and controversies about Lyme Disease, not to stop the discussion and block patients’ diagnoses and treatment.

      “Good science” does not mean “complete science.” A description of an elephant’s tail can be very good, but how well does it describe the whole animal? The description of the head would contradict the tail and ignite a furious debate over who is right and who is wrong. Unless you are willing to walk around to the other side to see what they’re talking about, you will never know that you’re missing something.

      1. WilliamLawrenceUtridge says:

        Why aren’t the infectious disease experts convinced by these studies, yet multitudes of laypeople are?

  79. MAIYYYYYZ says:

    Harriet, actually its due to all of the Lyme patients that are so appalled by your blog that there are so many comments.

    Ugh. Despicable that in my effort to provide research and clear definition of CLD, I have actually made this deplorable blog more popular.

    To all the Lyme patients out there: maybe if we ignore her she will go away.

    I, for one, am done here.

    Im sure none of the Harriet Hall groupies will miss me.

    Good bye.

    1. vadaisy says:

      Speak for yourself. Your docs sound like a bunch of crooks and charlatans asserting a bunch of unsubstantiated claims and cures, preying and profiting off of the chronically ill.

    2. WilliamLawrenceUtridge says:

      Ugh. Despicable that in my effort to provide research and clear definition of CLD, I have actually made this deplorable blog more popular

      I’m still not sure why you’re even here. If you’ve got such convincing data, why aren’t you debating with microbiologists and infectious disease doctors? I mean, what do you expect us to do, join your horribly flawed, bullying cause that relies on death threats and unscientific political crowbaring?

  80. MassTickland says:

    My story is similar to everyone elses. Successful 30 something male with an MBA managing a multimillion dollar business. Married with a family. Life is good. Suddenly gets sick with a mysterious illness that doesn’t go away. Dizziness, fatigue, memory issues, then sweating, tinnitus, muscle twitching, GI issues, vision issues, etc, etc. Went from doctor to doctor and had more tests than I can imagine. All negative except for an abnormal brain MRI and spect. Had a lyme Elisa. Negative.

    Found my way to an alternative doctor who happened to by lyme aware and she felt it could be lyme. Tested positive on an Igenex and Quest western blot. Then later tested positive for Babesia Dunanci (WA-1), Bartonella, heavy metals, and parasites. Also have very high Brucella titers along with Chlamydia Pneumonia and Mycoplasma Pneumonia. I have no record of tick bite, nor do I recall ever getting a bulls eye.

    Started ILADS treatment and made rapid progress…going from nearly bed-bound and disabled to 80% in about 6 weeks time (gasp…longer than the IDSA 28 days.) Spent the next year getting to 90% and a second year getting to 95%.

    Today life is mostly back to normal, but I still have symptoms. Namely night sweats, muscle twitching, tinnitus. All are minor. Have been off antibiotics for a year but on Chinese herbs.

    I am very thankful I found my LLMD’s and doctors who have been willing to treat this disease vs the mainstream who basically told me I was stressed, depressed, and that I should go on prozac. They were much more interesting in treating the symptom vs addressing root cause.

    I think part of the problem why there is so much controversy today is because each side has a different definition of Lyme Disease. The Mainstream IDSA and the author of this extremly close-minded and insensitive article are talking about treating and curing Borrelia Burgdorferi (Bb) and Bb alone.

    ILADS on the other hand considers “Chronic Lyme Disease” as the disease you get when you are bitten by a tick. It is an “umbrella” with numerous infections and medical conditions under the umbrella each of which must be addressed. These include Bb, Babesia (Microti, Duncani, and the dozens of other strains that we can’t even test for yet but that are in the USA), Bartonella, Brucella, Erlichia, RMSF, and all of the other bugs that we can’t test for but the tick has (the new Borrelia that was recently discovered is an example.)

    So we aren’t talking “apples to apples” from a disease perspective. That is the first issue.

    The second issue is, the main stream is treating CLD as if it was a simple, straightforward illness where the presentation, symptomology, and treatment is always the same. This is flawed as this is not what the disease is.

    The main stream likes to hide behind their “science”, defending studies that others have shown to be flawed. Yet when new studies are shown by PHd’s and MD’s that support the persistence of infection or the existence of CLD, the mainstream is very quick to jump to their “opinion” that these studies are “quackery.” There is a whole worldwide body of evidence that is being completely ignored by the IDSA and by the handful of IDSA doctors and researchers who put togehter the guidelines. And they use their “opinion” to do this. (conveniently ignoring the science when it doesn’t support their view.)

    The problem with “evidence based medicine” (which this entire site seems to be devoted to) is it is only as good as the evidence that has been published. And doctors begin to rely on test data alone (which may be flawed) rather than taking into consideration any clinical judgement whatsoever. I met a fantastic doctor who once described it to me like a driver who has used GPS too much and has forgot how to drive across town on their own without the GPS telling them where to go. That is what is happening with CLD and the evidence based medicine folks.

    In the case of CLD, there were some studies from years back that treated patients that already failed treatement for a few months and they showed no progress. Conclusion = additional therapy is of no benefit. The “evidence based medicine” disciples treat this as the gospel. Cased closed, no more discussion evidence. And therefore they are completely unwilling to even consider this may not be the entire story.

    Most LLMD’s believe there is more going on. They will treat and watch cause an effect and have that guide their decisions. My current doctor, who is amazing, admits to me that he doesn’t even know which bug we are going after right now. We know it is something because of the way the symptoms change based on the treatment. When I am on antiparisitics, I have a large flare followed by large improvement. When I am off treatment, symptoms return. The mainstream will say this is placebo or in my head. By I know my body. I know the patterns after dealing with this for 3 years. In my case, there is still some piece of the puzzle we are missing. Some bug or parasite that is in the mix that is causing the remaining symptoms I have. If it was permanent damage or PLDS, there would be no response to treatment.

    The difference here is ILADS LLMD’s are willing to treat and to try to help these folks even though they may not have all of the answers. Whereas the mainstream “Evidence Based” folks tell patience “sorry, we can’t help you.” They try to be empathetic and say they believe our symptoms are real (but they don’t), but they are not willing to even attempt to try anything to cure it other than prescribe drugs to cover up the symptoms.

    Have there been some LLMD scammers along the way? Sure. There are always some bad apples in every bunch…even in the main stream. But the mainstream is incorrect in portraying them all as taking advantage of a desperate group of patients.

    The majority of the LLMD’s I have met or heard about are the most compassionate, caring, and wonderful doctors I have ever met. They listen to patients. They try to help. And most times they have a positive impact on the patients treatment and quality of life.

    If the author of this article were my doctor originally, I would likely be disabled, on prozac, and convinced that I had an anxiety issue or somatoform disorder. But thanks to my LLMD I have my life back.

    That is evidence enough for me (and you evidence based folks can see the results in my brain scans after treatment vs before.)

    B

    1. WilliamLawrenceUtridge says:

      That is a very sad story, but it doesn’t prove that you had Lyme disease or chronic Lyme. Have you considered chronic fatigue syndrome as an identity instead? It has a similar set of symptoms.

      Did you notice the part in the article where Igenex is discussed as an unreliable lab?

      In the time leading up to, and after your diagnosis, until your recovery – what was your activity level like? Did you maintain your previous level or exertion, or did your LLMD recommend you taper off a bit? Or did your symptoms cause an enforced break? And considering they don’t know what causes chronic “Lyme” disease, doctors are pretty much stuck treating just symptoms because the causative agent is unknown (while it might be Lyme, it might not be, it’s still pure speculation on the part of LLMDs, their patients and advocates).

      The second issue is, the main stream is treating CLD as if it was a simple, straightforward illness where the presentation, symptomology, and treatment is always the same. This is flawed as this is not what the disease is.

      “This is flawed” describes pretty much the entire enterprise. When none but proprietary labs can confirm your diagnosis, and those tests are not licensed by the FDA, and other labs come to different conclusions, you don’t really have an empirical and objective way of confirming people have the same disease. You’ve basically got one lab, with no oversight, saying “hey, if you give me money, and some blood, I’ll tell you whatever you want, but trust me – it’s accurate”.

      The problem with “evidence based medicine” (which this entire site seems to be devoted to) is it is only as good as the evidence that has been published.

      Actually, it’s dedicated to science based medicine. It takes a step back from EBM, which basically glorifies trials, and asks “what about prior probability, what about using our prior knowledge of biology and chemistry to assess CAM claims”. Doesn’t really apply for CLD for two reasons – it has a vector that is realistic (bacterial infection) but the EBM reviews have been done and CLD didn’t “pass”. CLD at this point is basically at the stage of “anecdote based medicine”.

      The difference here is ILADS LLMD’s are willing to treat and to try to help these folks even though they may not have all of the answers.

      Well they’re certainly willing to charge you for the privilege of treating you despite lacking answers, evidence or data beyond anecdote.

      Whereas the mainstream “Evidence Based” folks tell patience “sorry, we can’t help you.” They try to be empathetic and say they believe our symptoms are real (but they don’t), but they are not willing to even attempt to try anything to cure it other than prescribe drugs to cover up the symptoms.

      It’s more likely they say “I don’t know what you have so I can’t treat it directly, I can only treat your symptoms.” Because they don’t claim certainty regarding the etiology of your symptoms.

      Also, I find your “drugs to cover up the symptoms” a little unwittingly ironic since your current “amazing” doctor is giving you, apparently, a pantload of drugs that seem to do little but suppress your symptoms but not cure you.

      The majority of the LLMD’s I have met or heard about are the most compassionate, caring, and wonderful doctors I have ever met. They listen to patients. They try to help.

      I bet they do! You’re probably paying them in cash, or basically cash, they don’t have to worry about insurance rates, they’ll listen to you as long as you keep footing the bill! That’s some awesome compassion!

      If the author of this article were my doctor originally, I would likely be disabled, on prozac, and convinced that I had an anxiety issue or somatoform disorder. But thanks to my LLMD I have my life back.

      …except for all the drugs you are apparently going to be on, for what sounds like the rest of your life.

      You might also have simply gotten better over time, without any treatment. Most symptoms go away on their own over time.

      1. MassTickland says:

        I’m not an expert on HTML tags and including quotations, so I will just answer your points directly.

        Chronic fatigue was never really an issue that I had other than for brief moments, so no I never considered it. And you have to believe that illnesses like “Chronic Fatigue” and “Fibromyalgia” are named and recognized illnesses by the main stream that have no known cause…and the symptoms are nearly identical to Chronic Lyme. So, based on my own experience and recovery, I believe that some of the folks with CFS / Fibro really have lyme and are misdiagnosed. Lyme is the “new great imitator” and it is commonly misdiagnosed as these illnesses, along with Parkinsons, MS, and other illnesses.

        Regarding Igenex…again why do you view them as a scam? They were accurate in my case. And if you don’t like my Igenex bloodwork results then I assume you will accept my Quest Western Blot results, which were positive 2 different times. (and which matched the Igenex results.) You also forget that the standard Labs (Quest / Labcorp) exclude some of the most highly specific lyme bands based on a more than decades old decision to exclude them as a future vaccine would use them. The vaccine was never commercially successful, yet these bands were never added back in to the diagnostic criteria. Igenex uses all bands and a higher quality gel to do their Western Blots. Think HDTV versus Standard Definition TV. It makes a difference.

        Regarding the mainstream only willing to treat the symptom when they don’t know the cause. That is the whole issue. My life was crashing around me. It was a very dark time and I almost lost everything due to this illness. I’m sorry, but it is a bunch of BS that any doctor won’t do everything possible within their power to try and heal me. Instead, they run a handful of tests. And when the tests are negative and I don’t fit into a specific pattern, they send me (and us) packing with some antidepressants and recommendations for therapy. There is something very wrong with this “blame the patient” model.

        LLMD’s are at least willing to try. They recognize the symptoms, the patterns, and know what symptoms typically respond to which treatments. The treatments don’t work in all cases with all people, but they do work in general and people do get better. These are peoples LIVES we are talking about. For me…I knew it wasn’t in my head. I KNOW my body. Something was causing what was happening to me. And I was fortunate to get diagnosed in 5 months when some take 5-10 years.

        Regarding the drugs I’m taking….both my doc and I firmly believe I will be completely healed / recovered and off all meds in the not to distant future. We just need to address the final issue which we are scratching our heads on a bit. So yes, for now I am still on a small amount of supplements…but it is only a couple of pills per day (versus handfuls when I was first in treatment.) And at least there is the believe I will get well…whereas if I was treating symptoms there is no possible hope for a cure.

        Regarding LLMD’s and me paying them and that is why they are nice…this is exhibit A of what you are missing. You assume the LLMD’s are all scammers. They all want to take insurance…but some have been sued by insurance companies for “over treating” lyme. So they can’t. It isn’t some brilliant scam to take people’s money and take advantage of desperate people.

        What bother’s me most is the attitude you and others in the medical establishment give the general population. I’m not a doctor or a scientist. I don’t have “Dr” in front of my name. But I am a highly educated business man who has been very successful working in a high tech field (life sciences actually). Yet you treat me and everyone else as if we are idiots when it comes to our believes on this disease (based on our own personal experiences.)

        I am surprised you follow the CDC/FDA and the published guidelines so blindly. If you are so intelligent, I would think you would challenge and question the status quo.

        Before I got sick I believed everything the FDA/CDC said. If a reputable agency had a position on something, I believed it. But they are very wrong on lyme.

        The culture and the ego’s in the medical community are part of the problem. People don’t want to admit when their research is proved to be flawed our incorrect. Just look at History with Ignaz Semmelweis. He was the father of antiseptic procedures and believed that washing hands and other procedures would prevent transmission of illnesses and save lives. The “mainstream” felt his views were outrageous and he died in shame as an outcast. It was only after his death that the medical community realized he was correct and now we use a lot of his principals today.

        The same thing happens in the USA. ILADS and LLMD’s have been saying there are likely 300,000 cases of lyme in the USA per year for more than a decade. And people like you rolled your eyes and laughed at this because the CDC said there was only 30,000 cases. Yet earlier this year, they finally adopted the number the ILADS and LLMD’s have been using for 10+ years. They were right all along…but I bet you will never admit this.

        And to your last point…no I would not have gotten better over time. I had abnormal brain scans with indications of early onset dementia (before I was dx’d with Lyme) This doesn’t just go away by itself. And today my Brain scans are normal. Completly healed. Thanks to my LLMD.

        1. Chris says:

          Wow!

          How do you folks have the time and energy to post such long screeds! I find it difficult enough to read this blog daily.

          1. RedKat says:

            Chris -

            Shouldn’t a “”science based medicine” forum focus on the issues? You seem to only make snide personal comments. It does you no credit.

          2. MassTickland says:

            When you almost lose everything and then recover from an illness that the mainstream (and most on this board) consider to be non-existent…then you tend to get passionate about the subject.

          3. WilliamLawrenceUtridge says:

            Someone made the point once, I think it was Malcolm Hopper talking about chronic fatigue patients, that incredibly tired patients are apparently able to leap to the fax machine (and keyboard, in more recent times) when someone makes a claim that is contrary to their beliefs.

        2. WilliamLawrenceUtridge says:

          Regarding Igenex…again why do you view them as a scam? They were accurate in my case.

          Because their tests have not been reviewed by the FDA, and their tests are only “accurate” when performed by Igenex. Also, Igenex has a history of offering a variety of spurious, unvalidated tests for a variety of imaginary conditions.

          Real scientific tests are valid irrespective who does them. It’s not dependent on which lab does the work.

          LLMD’s are at least willing to try. They recognize the symptoms, the patterns, and know what symptoms typically respond to which treatments.

          LLMDs are also willing to charge you a lot of money for the privilege. And the symptoms themselves are vague, often the kinds of symptoms that respond well to a variety of nonspecific interventions. It’s possible that the symptoms are responding to the treatment itself, it’s possible the symptoms are responding to placebo effects. Don’t know without better knowledge and science.

          both my doc and I firmly believe I will be completely healed / recovered and off all meds in the not to distant future…So yes, for now I am still on a small amount of supplements

          But in the meantime, he’ll keep taking your money. Also, supplements aren’t medicine. They’re food, at best.

          Regarding LLMD’s and me paying them and that is why they are nice…this is exhibit A of what you are missing. You assume the LLMD’s are all scammers. They all want to take insurance…but some have been sued by insurance companies for “over treating” lyme. So they can’t. It isn’t some brilliant scam to take people’s money and take advantage of desperate people.

          I’m not saying it’s purely due to greed. I’m saying they have motivation, financial and emotional, that might prevent them from recognizing, to their patients and themselves, just how questionable their reasoning and treatments are. And some might be motivated purely by greed to keep charging people lots of money for their treatments that they know have little chance of working. They might be scammers, they might not, but irrespective, at least some charge and make a considerable amount of money to deliver treatment.

          What bother’s me most is the attitude you and others in the medical establishment give the general population. I’m not a doctor or a scientist. I don’t have “Dr” in front of my name. But I am a highly educated business man who has been very successful working in a high tech field (life sciences actually). Yet you treat me and everyone else as if we are idiots when it comes to our believes on this disease (based on our own personal experiences.)

          First, I’m not a doctor and I don’t work in the medical system. Second, it’s not an issue of specific knowledge within this field (though it’s unlikely anyone but a specialist in infectious disease would understand the specifics). It’s about the general recognition that the human mind is poorly built to determine causality, but is very, very good at cobbling together rationalizations and chains of reasoning to justify pre-existing beliefs.

          The same thing happens in the USA. ILADS and LLMD’s have been saying there are likely 300,000 cases of lyme in the USA per year for more than a decade. And people like you rolled your eyes and laughed at this because the CDC said there was only 30,000 cases. Yet earlier this year, they finally adopted the number the ILADS and LLMD’s have been using for 10+ years. They were right all along…but I bet you will never admit this.

          So what you’re saying is, the CDC recognized when the evidence base had changed and accordingly changed their figures. Sounds like science works! Hooray!

  81. Lauren Hale says:

    If I don’t have Lyme-MSIDS, please some expert explain my bloodwork. Low NK count, high C4A, high neutrophils, positive WB blot by Steere’s patented “band 41 kDa” for borreliosis. All done by standard labs, Quest and Labcorp.

    Cannot really somatize those.

    1. WilliamLawrenceUtridge says:

      Well, just focusing on the Western Blot (the rest don’t appear to be positively indicative of Lyme, I’m not aware that any of those measures of single results are proof of infection by a single bacterial species though perhaps I could be surprised), it doesn’t appear to be clinically valid.

      1. Sawyer says:

        I really hope the CLD advocates will take the time to read the last paper you linked to. I found the description of the categories very helpful and a bit more nuanced than some of us here have been presenting. The conclusions are still rather harsh and will be tough to read, but I think it’s worth the effort.

    2. vadaisy says:

      Lauren, Please see a real infectious disease doctor to rule out whether or not you have an infection. If you only have band 41 as positive, then you don’t have Lyme disease. I read your comments on the SF Examiner. You are repeating a lot of misinformation about Lyme disease. Having dental work done will not activate Lyme disease. Was your mother diagnosed with MS? Please see a neurologist who can screen you for that as well.

      1. Lauren Hale says:

        It would be pretty pointless to go over my story. It isn’t unique. Feeling fluish then bell’s palsy. Received prednisone for BP, and then hell broke loose. I guess that is bevause bad infections and immunosuppressants do not mix. But my bloodwork is peculiar. Neutrophils from my understanding are the white blood cells that attack bacteria, the CD57 is low in a lot of borreliosis pts and the c4a is an immune complement measuring inflammation. Usually high in the same pts. Mine was 6000, not as high as some but definitely beyond what is normal around 2, 380.

        I do not live in an exotic part of the world where I would be exposed to some rare disease, nor do I have cancer or HIV.

        So given my blood results alone, there is evidence to me at least of some kind of pro-inflammatory condition that dragged down my NK absolutes. So, what am I suffering from then? How would an ID doc look at those markers of what is going on, regardless of my positive by Steere standards WB.

        I didn’t mean to suggest dental work causes “Lyme”. The series of events which lead up to this mysterious illness began four or five months prior to receiving extensive dental work. Crowns, extractions, fillings, etc. From my understanding, dental work can put a huge stress upon the body.

        1. vadaisy says:

          I am not a doctor, but from what I understand, C4a is also high in MS, CFS and other patients. Did you only have a positive WB band 41? That’s not considered a positive Lyme disease test result. Steroids make a lot of people feel like crap. It doesn’t mean you have an infection.

          1. Lauren Hale says:

            My MRI was clear. If I had MS, the lesions would correlate to my symptoms. That was one of the first things checked for. I thought I had PPMS at the rate I was declining but this was due to the steroid use making me worse off. I have not seen any studies linking high c4a to MS or CFS. Borreliosis and supposedly mold exposure elevate it.

            1. Harriet Hall says:

              ” If I had MS, the lesions would correlate to my symptoms”

              Not necessarily: 5% of patients with MS have normal MRI scans.

          2. Lauren Hale says:

            If I do have mycotoxins, I am taking cholestryamine to remedy that…I have been on abx and I will say Rifampin has been the best so far. It has great coverage to many pathogens and is one of few that crosses the BBB. Co-infections are probably more virulent in my case.

            I really do think in the end, we won’t need abx or herbs or whatever. RNA/Enzyme/protein etc therapies will have to be made for this condition. Something just more advanced and beyond my realm of knowledge.

            Our lyme stories may not matter because they are anecdotal but my bloodwork is suspicious alone besides the symptoms.

            1. Harriet Hall says:

              “Our lyme stories may not matter because they are anecdotal”

              Correct. No matter how many anecdotes are accumulated, they could still be misleading. So why do commenters keep recounting their personal anecdotes? If they think that just one more anecdote will convince us, they are badly mistaken. Only a coherent body of high-quality clinical evidence from peer-reviewed studies will convince us.

          3. vadaisy says:

            If I understand you correctly, you only had band 41 as positive. That does not interpret as a positive Lyme disease test. Complement factors appear to be elevated sometimes with immune-mediated inflammation. I see on PubMed references with associations of elevated C4 to anything from MS to liver disease and snake bites.

            Consider the sources of your information. These days anyone can get a ‘medical’ article published, but it does not mean that their data are true. They don’t even need any medical training or licensing – a lawyer can get their ‘medical guidelines’ or ‘research’ published.

            In PubMed, one source associating elevated C4 to Lyme disease was charged with falsifying their study results and barred from receiving research grant money. Why would you trust someone like that?

          4. Lauren Hale says:

            Harriet Hall, is 5% chance related to atypical MS? 5% seems really rare. From my reading, MS has very specific guidelines to diagnosis. Obviously white-matter lesions in certain areas of the brain or spine. If I did have MS, steroids would help me, correct? Not cause a cascade a of neuro and rheumatological reactions. That does not make sense to me.

            Borrelia can make lesions as well as produce those oligoclonal bands in many cases too. A radiologist can tell the difference between them. They just show immune activity in the CSF. So if c4a is high (not c4), what exactly is the pathology behind MS and CFIDS to cause that elevation?

            Yes I am absolutely correct that stories get our community nowhere. I don’t expect sympathy. We are on our own essentially.

            The evidence provided from Steere et al implicates chronic borreliosis I think until the early 1990s and then well, you know the rest I am sure…

            1. Harriet Hall says:

              No, not atypical MS. MRI is not diagnostic for MS. It is an aid to diagnosis, but there can be false negatives and positives. The National MS Society explains the diagnostic process here: http://www.nationalmssociety.org/about-multiple-sclerosis/what-we-know-about-ms/diagnosing-ms/index.aspx

  82. Lauren Hale says:

    Please respond why I would have MS or RA if I had high neutrophils indicating pathogenic infection? Again, no cancers found.

    Let’s just assume the CD57 NK count isn’t from borrelia. Let’s say it’s from like, EBV. EBV can affect it I suppose when you are immunocompromised?

    My neutrophils or WBC would be low due to viral infections, not high.

    Trusting PubMed, the street goes both ways in this. This war on Lyme will be fought with science, no other way.

    1. weing says:

      “If I did have MS, steroids would help me, correct?”
      Not really. I know they are used but I haven’t seen studies showing they are helpful.

    2. weing says:

      “Please respond why I would have MS or RA if I had high neutrophils indicating pathogenic infection? ”

      No eye deer. What’s high? What’s the baseline? Were you on steroids at the time? Did you have an infection at the time? Are the counts still elevated? See your doctor.

  83. RedKat says:

    “.. So why do commenters keep recounting their personal anecdotes? If they think that just one more anecdote will convince us, they are badly mistaken. Only a coherent body of high-quality clinical evidence from peer-reviewed studies will convince us.”

    Wow. A stunning admission. Total disregard for the patients, the whole purpose of medicine. Two or three stories might be dismissed, but not tens of thousands. A study doesn’t make a treatment good. Whether it works in the patients is what makes it good. If something isn’t working in the patients, it needs to be revisited. Patient voices must be a part of research. How else will researchers be held accountable? After all, the point of research is for the prevention and treatment of disease in people.

    Just as airplanes flew for years before engineers could explain why, sometimes truth is evident before science can explain it. You of all people would surely understand this example.

    Saying that patient stories mean nothing to you is akin to saying that the Wright brothers’ flights mean nothing to you until someone first theoretically proves human flight is possible on paper or in a lab. But the fact that they flew is true whether you think there’s scientific proof for it or not. If seeing them fly would have convinced you, then surely seeing the difference of treatment in CLD patients would also convince you of CLD. But only if you’re willing to see it, which you’ve just stated that you’re not. But why?

    I don’t see you asking the question of why the number of CLD voices is growing steadily. I don’t see you asking how the CDC could be so far off in its case count and how long they’ve known this. I see you unquestioningly accepting what you’ve been told. Why the blind faith in a skeptic like yourself? That seems contrary to the whole point of “science based medicine.”

    You are a proponent of a chicken-and-egg scenario for those of us claiming CLD. You say our illness doesn’t exist, unless we can scientifically prove it. But research funds are denied and some influential and powerful voices in medicine continue to trivialize and diminish our claims, keeping us “on the fringe” and unable to prove our claims to your liking. We have some proof, enough to justify further research, but it’s dismissed or ignored because it would require the authors of current dogma to admit they might have been wrong all these years. What other choice do we have except to become activists and demand we be heard and our illness be treated?

    Research tries to eliminate outside factors to create a controlled environment. But this is not always like real life. And of course, confirmation bias is alive and well in scientific research.

    A great example of this is Steere’s recent study, trumpeted in the NEJM and NYT claiming to have proved CLD doesn’t exist. He found about 17 patients who’d previously had Lyme and been treated with a short course of Doxy. These patients had their EM rash biopsied, and their strain of Borrelia cultured and identified. Later, they got another bulls eye rash and had another culture. The patients had a different genetic variation of Borrelia the 2nd time around, indicating they had been reinfected.

    Dr. Steere did indeed prove that a few people got reinfected with Lyme. But it’s laughable to say this proves CLD doesn’t exist. It only proves this tiny sample didn’t have immunity to Lyme Disease, and yet it’s given rock star coverage in the NEJM and NYT and trumpeted as proof to settle the debate. Really? If this is “science”, then “science based medicine” is doomed.

    Steere has been proven wrong multiple times in the past, and yet the dogma is that whatever he says must be fact. That dogma is so strong, the reviewers & editors of the NEJM and NYT didn’t even notice that the study didn’t mean anything. Stories like this should make you question other conclusions by the same people and make you ask why they are so biased that they’ll stoop this low.

    You and your supporters here have offered no proof at all of your opinions and so far, you reject any and all evidence to the contrary. (Yes, I read your article. I’ll say it again: Absence of proof is not proof of absence.) No one who has been through what I’ve been through would agree with you.

    And so I’m left with the question, Where is the intellectual curiosity in this quest for “science based medicine?” Medicine is not a black and white field. Despite the elevation of this forum in a Google search, the forum hardly seems to highlight a desire to encourage critical thinking.

    It looks much more like a forum for repeating and defending official dogma of Western medicine while dismissing those who don’t agree. If that isn’t anti-science, I don’t know what is. I think it would be more credible if you applied the same standard of proof to your own opinion that apply to others. If you can’t admit that the unproven” MIGHT be true, then you can’t call yourself a scientist.

    Ironically enough, I know I’ve made a point when I’m called “delusional” as another commenter did. The last resort for someone who can’t defend their position is to label their critic as mentally ill, just as too many doctors do to their patients when they are at a loss for answers. You can call me passionate, but not crazy.

    BTW, my spouse & I both have had successful careers in scientific fields. We are both well educated, thoughtful, analytical, and naturally skeptical people. We are both amazed at how strongly some people who’ve never met me believe that my illness “does not exist” and how “antibiotics don’t help.” When it’s you or your loved one, you’ll care only about results, not about some statistics from a lab study.

    All other known medical possibilities have been eliminated for me, so you can’t say I just have “something else.” I don’t have any immune dysfunction, so you can’t call me a PTLDS case either. As long as you refuse to listen to and believe the patients, you should have no part in this debate and no say in how I’m treated until a more comprehensive body of evidence is available on which to form such opinions.

    For all my own strong opinions, I mean no disrespect, Dr. Hall. I only wish you would turn your skeptical eye 180 degrees and don’t take any study conclusions at face value. Take the true investigative approach by trying to prove us right and see what you find.

    Unlike most others who refer to them, I’ve actually read some of the studies used to deny CLD and long term treatment and I was shocked. The “multiple” controlled studies are just the same study hastily run multiple times with at least half of the same names on them. That doesn’t remotely meet the standard for “multiple” studies or independent confirmation. In fact, the studies’ results are consistent with what CLD patients and LLMDs say. Unfortunately, the assumptions and the conclusions ignore the facts.

    1. weing says:

      “Take the true investigative approach by trying to prove us right and see what you find.”

      Do you really not see what is wrong with this statement? Substitute ‘Santa Claus is real’ for ‘us right’.

    2. Lauren Hale says:

      The science is there. Steere et al’s own data concerning these diseases confirms everything that people have fought for. The literature is crystal clear. They found Borreliosis was relapsing, and is a severe infection. It was there from the beginning. Chronic borreliosis was established as a true entity, then they tried to take it back by saying it is psychosomatic madness. Anti-science and blaming the pt and laziness and ego took over I guess.

      They felt no accountability, and it was all about vaccine money and obfuscating “Lyme” into some minor aches and pains. But as we know….that was the exception, not the rule. You think these groups of people are going to just admit these travesties now? Forget it.

      I dont expect anything from anybody.

    3. Andrey Pavlov says:

      I really don’t have time to deconstruct every ridiculous thing you’ve said, but there were two things that really stood out to me.

      1) Yes, 10,000 individual patient stories do not make convincing data. That is simply, at a fundamental level, not how data and statistics work. No matter how much you wish it did or how much you feel like it should it doesn’t. 10,000 anecdotes would make a pretty good hypothesis though. Which can fail to be supported or even disproven, despite the 10,000 anecdotes.

      2)

      Just as airplanes flew for years before engineers could explain why, sometimes truth is evident before science can explain it. You of all people would surely understand this example.

      I sure would. And it is an incredibly good example… of why you don’t have any idea what you are talking about. A simple 10 second google search will show you that science for flight was well in advance of flying and machines to test the theories were built after the theories of flight. It is simply absurd to think that we magically built a machine, which we had no idea how it worked, and it flew. And then we discovered the physical principles of flight and now, at last, engineers could explain how these machines they had been building worked. Because, you know it totally makes sense people could build a very complex machine having no idea what they were doing and have it fly only to figure it all out later.

      In 1799, Sir George Cayley defined the forces of lift and drag and presented the first scientific design for a fixed-wing aircraft. Building on his pioneering work in aeronautics, scientists and engineers began designing and testing airplanes. A young boy made the first manned flight in a glider designed by Cayley in 1849. In 1874, Felix duTemple made the first attempt at powered flight by hopping off the end of a ramp in a steam-driven monoplane. Other scientists, such as Francis Wenham and Horatio Phillips studied cambered wing designs mounted in wind tunnels and on whirling arms. Finally in 1894, Sir Hiram Maxim made a successful takeoff (but a woefully uncontrolled flight) in a biplane “test rig.” At the same time, Otto Lilienthal made the first controlled flights, shifting his body weight to steer a small glider. Inspired by his success, Wilbur and Orville Wright experiment with aerodynamic surfaces to control an airplane in flight. Their work leads them to make the first controlled, sustained, powered flights on December 17, 1903 in Kitty Hawk, North Carolina.

      In 1799, Sir George Cayley defined the forces of lift and drag and presented the first scientific design for a fixed-wing aircraft. Building on his pioneering work in aeronautics, scientists and engineers began designing and testing airplanes. A young boy made the first manned flight in a glider designed by Cayley in 1849. In 1874, Felix duTemple made the first attempt at powered flight by hopping off the end of a ramp in a steam-driven monoplane. Other scientists, such as Francis Wenham and Horatio Phillips studied cambered wing designs mounted in wind tunnels and on whirling arms. Finally in 1894, Sir Hiram Maxim made a successful takeoff (but a woefully uncontrolled flight) in a biplane “test rig.” At the same time, Otto Lilienthal made the first controlled flights, shifting his body weight to steer a small glider. Inspired by his success, Wilbur and Orville Wright experiment with aerodynamic surfaces to control an airplane in flight. Their work leads them to make the first controlled, sustained, powered flights on December 17, 1903 in Kitty Hawk, North Carolina.

      Just bear in mind that this is the sort of narrative and logic you are bringing to the table here to defend your “scientific” ideas about chronic lyme. To honestly think that we would be able to magically build a plane with no idea how it worked and use that as an analogy to why CLD must be a real disease that we just haven’t figured out how to explain yet… despite evidence being abundantly available and clear.

      1. RedKat says:

        You sure read assumptions into my analogy. I did not say the Wrights were able to “magically build a plane with no idea how it worked” and then successfully fly it. That statement is indeed ridiculous.

        My statement that airplanes flew for years before engineers could explain why was apparently too simplified. A better way of saying this might be that the science of aerodynamics was not developed in a way to mathematically explain exactly how powered flight worked successfully until after the Wright brothers’ flights. The principles were understood before, but modern aerodynamics came after.

        Once the Wright brothers proved it was possible, the field of aerodynamics developed in leaps and bounds. (You can look up Ludwig Prandtl, et.al. for more scientific info. You can find info on him in a simple 10 second Google search.)

        We can argue about exactly what aerodynamics were defined before vs. after 1903, but that’s really not the point. My point is that seeing something happen is a form of proof, even if you can’t scientifically explain it yet (e.g. How some antidepressants actually work or many topics in astronomy). Much trickier is proving something you can’t see (e.g. finding HIV, or finding the Higgs Boson).

        Before the Wright bros flew, there were plenty of people who insisted that human flight was impossible and that those who tried to build flying machines were cranks and fools. But “unproven” does not equal “false.” Science is all about observation, theory, and study. So why don’t observations count when it comes to CLD?

        If you’ll do the research, you’ll find no proof that all Lyme patients are cured with a short course of abx, and therefore no basis on which to say that CLD “doesn’t exist.” IDSA officials have even admitted they can’t prove Lyme patients are cured. There is also no proof that extended antibiotics do not help, but plenty of evidence that extended antibiotics do help.

        In hopes of getting away from the emotions and more towards the science, here’s a list of published papers over the years documenting persistence after antibiotics. Some of the authors are the same people who now deny it.

        http://www.lymeinfo.net/medical/LDPersist.pdf

        1. Harriet Hall says:

          Scientists who question the existence of CLD have read all those published papers. They didn’t think they constituted proof. Do you understand their reasoning?

        2. Chris says:

          “My statement that airplanes flew for years before engineers could explain why was apparently too simplified. A better way of saying this might be that the science of aerodynamics was not developed in a way to mathematically explain exactly how powered flight worked successfully until after the Wright brothers’ flights. The principles were understood before, but modern aerodynamics came after.”

          Wrong. Read what Andrey wrote more carefully. Because the quote statement from you, “Just as airplanes flew for years before engineers could explain why, sometimes truth is evident before science can explain it.” is patently not true. Especially since there was plenty of science behind boat sails and screw propellers, starting with Daniel Bernoilli’s Hydrodynamica published in 1738.

          One of the technologies that was really under development were smaller and more powerful engines. That is a reason that airplanes and automobiles have a similar developmental curves. Much of it having to do with power available versus power needed (which I had calculate as an aerospace engineering student when computers programs were carried around in boxes on punch cards). Engine technology was using fluid dynamics early on, the real issues were fuel (more energy/weight) and materials (especially those that do not melt at the needed temperatures).

          And the Wrights were not the only ones who were starting to build actual heavier than air flying vehicles. Some reading for you: <a href="http://www.amazon.com/Introduction-Flight-John-Anderson/dp/0073380245"<Introduction of Flight. I still have my copy from almost forty years ago.

          I know I have no credibility with medical stuff, but be careful what you say when you tread into the stuff I do know (along with Andrey’s girlfriend).

          By the way, a suggestion: Go read The Cutter Incident by Paul Offit. Near the end of the book it takes about the Lyme disease vaccine. Take note of what happened to that. Then gather your prodigious energy and determination to campaign for the return of that vaccine. It would prevent more infections, and possibly give folks with CLD some antibodies to fight the pathogen. It would also be much safer than using antibiotics.

    4. Sawyer says:

      I really wish you guys could see what this discussion looks like from the other side of the aisle. You keep inserting little nuggets of real science in between emotional rants, conspiracy theories, and vague analogies, and then get offended that we’re not focusing on the science. This is NOT how to have a productive conversation. It doesn’t work, and almost every comment that pops up here is just making it less and less likely anyone will ever change their mind about this topic.

      The regular readers of this blog have had to endure years of crappy arguments from cancer quacks, anti-vaccine nuts, CAM con artists, mental illness deniers, and health fad gurus. They all have the same arsenal of crappy debate tactics. For some reason you folks have adopted nearly IDENTICAL talking points:

      - Over emphasis on patient testimonials as scientific evidence
      - Use of emotional pleas to bolster said testimonials
      - Galileo gambit / Semmelweis / Wright brothers “scientific rebel” story
      - Complete demonization of opponents and all mainstream medicine (Someone went so far as to suggest purposeful infection of Dr. Hall)
      - Pigeonholing opponents / false dichotomies (if anyone criticizes any aspect of current CLD diagnosis, then they deny all evidence of Lyme)
      - Insisting that the worst motivation of an opponent must be their only motivation
      - Never calling out anyone on your own side for making the above mistakes

      I find this topic fascinating and would love to learn more. But I can’t un-see all those talking points once they get used. Stop using them.

    5. Sawyer says:

      I neglected to mention the most ridiculous thing that’s going on in these comments. It has very little to do with science, but a lot to do with having an honest discussion with people you disagree with. In 15 years of using the internet message boards, I don’t think I have EVER seen someone “necro” a controversial topic that went bad the first time around and magically turn it into a successful discussion. It’s generally seen as a dishonest attempt to hijack the conversation. There are other media formats where this is possible, but the internet isn’t one of them.

      If you care deeply about this topic, don’t make this faux pas again.

  84. Lauren Hale says:

    It’s not about our stories. I wish media would stop rehashing news stories about lyme pts, our stories are nearly the same. It is about THEM. It is about exposing medical fraud committed and perpetuated by people within institutions over the years trying to control and marginalize these infections. The science was made. There is no going back on their previous conclusions and findings. We just can’t let that continue, can we? No.

    That is the real issue that we are just skirting around and stories have gotten us basically nowhere . No wonder all the fluff daytime shows air these sob stories. These are not serious platforms.

    So lymies this post is mostly aimed at you, if you are browsing here, stop telling stories and entertaining denialists. These people don’t care or “get it”. It is easy to be labeled a hysteric that way. Get active. Read the literature. Think ACT UP. Nobody is going to make changes unless you get involved. And most of all, don’t be afraid to speak your mind.

    1. vadaisy says:


      It is about THEM. It is about exposing medical fraud committed and perpetuated by people within institutions over the years trying to control and marginalize these infections. The science was made.

      Science has been made? Then why can’t their study results be replicated if the science has been made? Why can’t scientists with no history of falsifying clinical trial results replicate the findings of the convicted and/or guilty? Why won’t anyone explain to me how NAET detects or treats Lyme disease? It’s an easy question given your claims that the science has been made.

      “Lymies”, “denialists”, “conspiracy”, … sounds like a sort of cult fiction that has gained traction across the Internet, turning into a pandemic disease that escapes all medical detection except by an authentic “Lyme-literate Medical Doctor”. ‘Are you one of Us, or one of Them?3′

      1. Lauren Hale says:

        Yes, the science has been done. By Steere et al, no less. Why is the fact that their own data contradictory to what they claim today?

        What did they conclude around 1986? That borreliosis was chronic, debilitating, immune dysregulating, and deadly. Yale found borrelia in the corpses of dead babies birthed from infected mothers.

        Anyone who has done their homework knows that.

        1. vadaisy says:

          Anyone who has done their homework knows that.

          Only the people directly involved and present for any given event “know” what was done and discussed. What others read are interpretations and opinions that have been skewed across the years. In the case of Lyme disease, those opinions have mostly been written by patients who happen to be making a career in journalism and film making. Their opinions are biased towards protecting their doctors, earning a living and making a name for themselves, building their own career. Others appear to suffer from mental illness or other serious health conditions which were misdiagnosed as “chronic Lyme disease”, such as cancer.

          In general, no one has any idea how or what their doctors are doing to their other patients. As a non-participant, it is preposterous for anyone to assert differently.

          These persecution and conspiracy allegations are like a fish story about the one that got away. The story and the conspiracy claims grow and grow over time.

    2. WilliamLawrenceUtridge says:

      ACT-UP was activism surrounding AIDS. The evidence for AIDS is clear and unambiguous, its etiology is well-understood and the treatments offered make sense within the context of the illness and immunology.

      The analogy breaks in the absence of comparable evidence.

      1. Lauren Hale says:

        HIV/AIDS was poorly understood and ignored for roughly 20 years. Remember GRID?

        It was doubted as a true entity, and is even to this day with the Duesbergs of the world.

        1. WilliamLawrenceUtridge says:

          Yeah, but Duesberg is a fucking idiot, possibly a lunatic. There’s quite the difference between an AIDS denier in 1981, and now.

          Well the nice thing is, once you build up the same level of evidence as AIDS, you will doubtless have millions of dollars channeled into it. The very fact that chronic “Lyme” disease appears to, if proponents are correct, have some sort of long-term systematic effects, hitherto unappreciated, should attract some research funding. Sounds like you should get on that, wrestle up some proof.

          Incidentally, GRID lasted a year. It was posited in 1981, AIDS was selected as a name in 1982. HIV was identified in 1983.

          How long as Lyme been identified as a distinct disease?

          1. Lauren Hale says:

            Gosh, borreliosis has been reported since two hundred years ago or so in Europe.

            In the US, it had previous names… Montauk Knee, etc.

            First “bulls-eye” case treated in 1970 because they had read literature about these rashes and sickness. Murray’s family struggled ten yrs before anyone paid attention to their illness that we know today as Lyme,.

            So who knows how long it has been present and how widespread? Unknowns.

            Duesberg believes HIV is harmless virus. Wormser has said the borreliosis in pts is “zombie bugs” and has stated they aren’t infectious. That is troubling, too.

            Montagnier believes in “CLD”. I notice he has been called a quack for his stance on non-allopathic medicine. But these are not mutually exclusive.

            Yes borreliosis/MSIDS won’t be “cured” unless they restore immune function.

            1. WilliamLawrenceUtridge says:

              Duesberg believes HIV is harmless virus. Wormser has said the borreliosis in pts is “zombie bugs” and has stated they aren’t infectious. That is troubling, too.

              Yes, but the data doesn’t back Duesberg up – he is wrong. And Montagnier, despite his involvement in discovering HIV, also believes in homeopathy now, which the data doesn’t back up, and if he doesn’t believe in CLD, the data also doesn’t back him up. It doesn’t matter how brilliant the scientist is – if the data doesn’t back them up, well, they need better data or recognition that they are wrong.

              Make all the analogies you want, it’s not data. If you want to convince me (and you shouldn’t, I don’t care and can’t influence patient care), you need to convince the experts.

              Even assuming you are right, which is an assumption, not a fact, you still don’t have the data. And that’s really the problem, even Montagnier didn’t just say “everyone should trust me”. He produced the data. Steere didn’t say “there’s a new disease, trust me”, he produced the data. Burgdorfer didn’t say “it’s a bacteria, trust me”, he produced the data.

              The thing you are missing is the data. You’ve got a lock on rhetoric, that’s fine. CLD patients are also pretty good about collective action, lobbying, and threats, that’s fine too. What you need, what you should focus on? Data. Replicable empirical evidence that what you believe to be chronic Lyme disease is caused by Bb infection or its sequelae. Until you’ve got that, you aren’t going to see ID docs or the CDC changing their mind, you’re just going to see a whole bunch of repetition similar to that I’ve made here. You need the data.

              1. Lauren Hale says:

                Yes.. I agree pretty much everything you’re saying. Preferrably sooner than later.

        2. Harriet Hall says:

          @Lauren,

          You’ve gotten the history wrong. HIV/AIDS was NOT ignored. The first reports of clusters of PCP in gay men appeared in 1981, and the medical literature was full of reports and studies from that moment on. GRID was named in 1982, and the term AIDS replaced it only months later. In 1983 the causative virus was discovered, and effective treatments quickly followed. It is doubted only by denialist cranks.

          It took only 8 years from the first description of H. pylori in stomach ulcers to the standard treatment of ulcers with antibiotics.

          When a hypothesis is valid, it doesn’t stay in limbo like chronic Lyme has; studies build on studies to form a mass of confirmatory data and a scientific consensus soon results.

          1. Lauren Hale says:

            Yes, it was largely ignored.

            AIDS was present in the sixties. That teenager from MO is said to be the first.

            “Effective treatment” didn’t quickly follow, either. AZT was too toxic for these patients. It wasn’t until the 90s when HAARVs came around.

  85. RedKat says:

    Right back at ya, Sawyer. How can I have an honest discussion about science with people who know nothing about me, but insist that my illness isn’t real and that I’m delusional and ridiculous because my experience doesn’t fit in the neat little box called Lyme Disease?

    How can I not get emotional when my plea to you all to scratch the surface of Lyme dogma to see how incomplete the science underneath really is, is equated to asking you to try to prove there’s a Santa Claus? (The guy in the sleigh I presume. Because St. Nicholas was indeed a real person in the 3rd century.)

    The responses to my arguments are almost entirely emotional. One says he doesn’t have time to “deconstruct every ridiculous thing you’ve said”, but then posts a long critique of my analogy while ignoring the points I made about flawed studies and reasons to question the “experts”.

    I haven’t seen a single comment defending the PTLDS view in any response, nor have I seen any evidence that “lingering symptoms” of Lyme always fade away in 12-18 months, nor any acknowledgement that many of us are way beyond the “aches and pains of daily life.” (Severe pain, tachycardia & arrythmia, and debilitating fatigue are just a few examples.)

    Didn’t someone say, “A lie repeated often enough is indistinguishable from the truth.” I’ve seen only vague mentions of “studies” in the original article, but no one seems to know what they are despite being sure they are definitive. (I have actually read them. They are not what you think.)

    There is a comment or two about how even a large number of anecdotal stories doesn’t constitute “proof.” This is technically true, but it should still make you question why so many people have a testimony that contradicts the dogma. How else can we adjust and update treatment guidelines unless patients and treating physicians communicate that the existing guidelines don’t always work?

    We can’t have a good discussion about the science if the anti-CLD proponents refuse to acknowledge that the current Lyme dogma might not be entirely accurate. We CLD sufferers are continuously told that there’s no evidence for CLD and extended treatment doesn’t work for lingering illnes, and neither is true.

    Dr. Hall’s own credentials page says she cares more about what someone says than what their credentials are. But yet she seems to blindly accept the words of certain researchers & officials who have been proven wrong before, while broadly dismissing someone like me who has personal experience as well as hundreds of hours reading studies, papers, and articles about Lyme and coinfections.

    This seems contradictory to me, but then I’m guessing it’s consistent with her prior experience as a flight surgeon. Some pilots will lie or cheat if necessary to pass their physicals so they can fly. Flight surgeons can’t believe everything pilots say and must rely on direct observation and tests to declare them fit to fly. (I know this because I know the USAF developer of a cheat-proof tone count audiometer for testing pilots’ hearing.) It’s unfortunate that she has universally transferred this distrust to all patients. I have to wonder if she has even seen a late stage Lyme patient. My doctor has seen over 7-8,000 and has a waiting list, and yet she’s determined he’s a quack because we can’t believe these patients.

    It’s not that we expect you all to suddenly believe that Lyme can be chronic. It’s that we want you to hear our stories, to realize this issue is by no means resolved and that it needs to be studied further (which includes research into CLD claims). We want people to back off their entrenched opinions that Lyme is easily treated and cured in every patient. We also want you to stop trying to block our treatment and persecuting our doctors.

    As to the “years of crappy arguments” you’ve endured, well, we CLD sufferers have endured the same. As to the “crappy debate tactics” you list, I’ve seen every one of them used by Dr. Hall’s supporters on this page. I’ve seen unsubstantiated heresay repeated here multiple times as if it were fact. I’ve seen baseless accusations made by people who clearly don’t know what they’re talking about. And if all someone can say is “You’re crazy.” or “You’re ridiculous,” they shouldn’t be commenting on a pro-science forum. I am pro-science. I just don’t agree that I should go untreated while we wait a couple decades for the “right” scientific studies to explain everything.

    Do I agree with everything all CLD sufferers say and believe? Of course not. I cheer for some and cringe at some. I think some do wander off into unchartered territory because they’re looking for help that doctors won’t give them. But I don’t think it’s appropriate for me to appoint myself debate moderator on this forum. I don’t see that you or any others have called out your own on their mistakes or inappropriate comments either.

    I am not sure what the definition of a “successful discussion” is, but I can only hope that I’ve planted some seeds of doubt in someone who blindly believes the “experts” of Lyme.

    I personally take some of your comments to heart. You make some good points about debate etiquette and the nature of internet discussion. I will learn from them as I want to be a better communicator. I am very happy you find this topic interesting and want to learn more. There are plenty of other articles, blogs and forums out there if this discussion is too hard to wade through.

    I encourage you to check out the series on Lyme done in the last several months by the Poughkeepsie Journal. I also encourage you to read the blog of the LymeMD, a practicing LLMD who used to believe the IDSA guidelines, until he began to notice that reality didn’t match the dogma. There’s a few years of short blog posts that can give you some insight into what it’s like to treat late stage Lyme and chronic Lyme patients. He’s had plenty of very ill patients abandoned by doctors at what’s probably the greatest medical institution in the country, possibly the world.

    The book “Cure Unknown” by Pamela Weintraub is excellent. She is a respected science writer and she describes different points of controversy as well as the history of the conflict. She digs in to the issues and names names. It’s not just interesting, it’s a really good read. I highly recommend it.

    1. weing says:

      “We CLD sufferers are continuously told that there’s no evidence for CLD and extended treatment doesn’t work for lingering illnes, and neither is true.”

      Now, that sounds like the dogma of the CLD chorus. And did you just imply that the guy in the sleigh is not real? What kind of approach do you have to science if you don’t try to prove that he, the elves, and the flying reindeer are real? You probably want to go the unscientific route of checking out the reports, testing, and falsely concluding that it is someone dressed in a Santa Claus suit instead and finding no evidence of the real Santa, flying reindeer, and elves?

    2. vadaisy says:

      It must be terrible to feel that your doctors are being persecuted. Hopeless and frustrating. Which doctor is the most persecuted? Is it the one that was injecting bovine stem cells into patients? The ones sexually assaulting patients in their office? The one taking kickbacks from home infusion companies so as to falsely diagnose patients with Lyme disease? The one with apparent psychic powers which enable him to make a telephone diagnosis of children he’s never met?

    3. Lauren Hale says:

      It is a form of derailment. Calling someone “crazy”, “cultish”, etc is a weak way to try to discredit someone.

      Ever seen the movie “Gaslight”?

      The people here do not seem to be interested in the addressing real issues. It is all fluff, “woo”, misdirection, name-calling, cannot address me as to why Steere et al concluded borreliosis is chronic and then ripped it away as if that never happened. What is the logic in that? Their own data implicates and damns them.

      They lied, and people let them get away with it. Criminal. Fraud. Nothing short of mass murder. So much loss, in every sense.

      1. vadaisy says:

        People who defend physicians who mistreat and endanger their patients, group together with others to conceal incriminating information, intimidate and intentionally sway other patients from attempting to ensure their own health and safety so as to protect those physician, as well as pressure, intimidate and misinform patients to ‘donate’ money to defend such physicians as innocent, are engaging in cult-like tactics. I’m sorry you’re being so misled. Frankly, I find it all quite disgusting, Phyllis.

      2. vadaisy says:

        By the way, cults and cult psychology are real. Ignoring well-known crowd (cult) manipulation techniques shows either a lack of education, outright denial or indoctrination.

      3. Chris says:

        I believe on of the best things you could spend your energy is the reintroduction of the vaccine for Lyme disease. There is a description at the end of The Cutter Incident by Paul Offit on how a spurious law suit removed it as an action.

        With the return of the vaccine it could be prevented in the first place, and it may be a way to teach the bodies of those with CLD to fight off the pathogen.

    4. WilliamLawrenceUtridge says:

      Right back at ya, Sawyer. How can I have an honest discussion about science with people who know nothing about me, but insist that my illness isn’t real and that I’m delusional and ridiculous because my experience doesn’t fit in the neat little box called Lyme Disease?

      It’s not that. I’m not insisting that your illness isn’t real, or that your systems aren’t real. I’m pointing out that you don’t know for certain that they are caused by the Bb bacteria transmitted by Lyme tick bite. Vague symptoms can be caused by many things, the etiology of your suffering is uncertain, that’s the point being made.

      The responses to my arguments are almost entirely emotional.

      To be fair, most of your arguments are predicated on the intensity of your suffering. You demand us to respect your etiology because your symptoms are profound.

      Didn’t someone say, “A lie repeated often enough is indistinguishable from the truth.”

      It’s often attributed to Goebbels but nobody actually knows for certain. In the absence of evidence, it applies equally to proponents, and critics, of chronic Lyme disease. That’s why more evidence is needed and why certainty is unwarranted.

      This is technically true, but it should still make you question why so many people have a testimony that contradicts the dogma.

      Because the internet makes it easy for people to find others with vague symptoms, to amplify the certainty-generating mechanisms of human cognition, for the millions of people with vague symptoms, normally spread across a huge continent, to find each other and publicize their stories.

      The question I would as is – if the proof is so iron-clad, if it’s so concrete, why doesn’t it show up in studies? Why isn’t the etiology you propose easily identified through research?

      We can’t have a good discussion about the science if the anti-CLD proponents refuse to acknowledge that the current Lyme dogma might not be entirely accurate. We CLD sufferers are continuously told that there’s no evidence for CLD and extended treatment doesn’t work for lingering illnes, and neither is true.

      That’s almost exactly opposite; to up date the guidelines, you need evidence that you don’t seem to have. Guidelines change all the time – to reflect improved evidence. You want better guidelines, conduct better research. Align findings with the basic biochemistry and clinical findings, let the empirical research guide you rather than insisting on the research only being valid if it validates your pre-existing beliefs.

      It’s not that we expect you all to suddenly believe that Lyme can be chronic. It’s that we want you to hear our stories, to realize this issue is by no means resolved and that it needs to be studied further (which includes research into CLD claims). We want people to back off their entrenched opinions that Lyme is easily treated and cured in every patient. We also want you to stop trying to block our treatment and persecuting our doctors.

      You have to realize that stories aren’t research. You have to realize that future research is predicated on the quality of previous research. You have to realize that your own opinions are entrenched and as yet invalidated, and perhaps you should back off of them too. And you have to realize that your requests to “stop persecuting your doctors” is a bit rich.

  86. Harriet Hall says:

    All of these groups question the existence of chronic Lyme disease: the IDSA, the CDC, the National Institute of Allergy and Infectious Diseases, the American Academy of Neurology, the European Federation of Neurological Societies, the European Union of Concerted Action on Lyme Borreliosis, the Canadian Public Health Network, and the German Society for Hygiene and Microbiology. Even the original discoverer of Lyme disease agrees with them.

    Do you really think all of these experts are unaware of the published evidence supporting CLD? Do you think they are all involved in some kind of conspiracy to suppress the diagnosis? What would they have to gain?

    Consider that the discovery of a new disease would make the reputation of a scientist and would probably lead to a Nobel Prize. Consider that clinicians would enthusiastically welcome a cure for the many patients who come to them with unexplained symptoms. Consider the profits to be made by Big Pharma if prolonged courses of antibiotics were proven effective. Consider that the patients being treated with antibiotics say they are getting better but continue to have symptoms for months or years, despite believing that the treatment will eventually eliminate them. Consider the experience with chronic Epstein-Barr infection as a cause of chronic fatigue syndrome. Consider that the doctors who advocate long-term antibiotics also claim that detoxification, hormone balancing, heavy metal removal and ramping up immune function are equally important.

    It was curious that one of the major trials had trouble finding enough subjects to test. Considering the number of LLMDs and patients, the potential benefit to Big Pharma pockets, and the money that has gone into publicity, lobbying, and other efforts, why has the LLMD community not even tried to do a “better” study themselves, one that would overcome all their objections to the existing studies and use the exact treatments that they advocate? Why has Dr. Richard Horowitz not published anything on his experience with more than 12,000 patients? If LLMDs have truly found a new disease and an effective treatment for it, it is unconscionable for them not to share the evidence with the world. If I were a fan of conspiracy theories, I could invent one to say that the LLMDs were conspiring to deprive the rest of the world of a great discovery and to keep the patients to themselves for their personal profit. Criminal, fraud, mass murder? Why not blame the LLMDs instead of the mainstream scientists?

    1. RedKat says:

      Listing organizations that support the IDSA & CDC Lyme dogma doesn’t mean much to me, as I now understand that blind faith is common in the field of medicine. Other countries even blindly follow our guidelines, approvals, and CDC policies because they don’t have the resources to validate or duplicate the work.

      For example, a senior Australian health official denied that Australians have Lyme because they test negative on “internationally accepted testing standards.” He’s talking about the CDC testing protocol, which was developed for surveillance using the Shelter Island strain of Borrelia. I saw an IDSA Lyme Committee official’s quote that qualified the testing for North American acquired Lyme, the only admission I’ve seen of this so far. A CDC study a few years ago showed the testing was only 50% accurate against a European strain, and yet other countries are using still the test protocol as an absolute diagnostic requirement.

      The trials you mention that had trouble finding enough patients did so because their LLMDs knew the study was a set up to fail. They were clear in stating that their patients needed many months or even years of treatment, but the study was only going to give them a 2nd month (given some duration of time after the 1st month of treatment failed to resolve their symptoms). Patients and LLMDs alike complained about this study before it started, but they were assured that this was only the first in a series of studies to determine appropriate length of treatment. They lied. You can talk to Phyllis Mervine on this topic. She was the patient liaison on this study with first hand knowledge of the betrayal.

      1. weing says:

        “Listing organizations that support the IDSA & CDC Lyme dogma doesn’t mean much to me, as I now understand that blind faith is common in the field of medicine.”
        I am sure it means nothing to you as you are wiser than all those scientists and carry the revealed truth. You have great faith in your truth about CLD. You could even call it blind. What would convince you that you are mistaken? I suspect, nothing. There is a saying in medicine that goes something like, “A doctor who treats himself has a fool for a patient and an idiot for a doctor.” Is it possible that you have made a self-diagnosis and are simply using your doctor, as an enabler, to self-prescribe?

        1. RedKat says:

          Little committees within organizations make the decisions and publish the guidelines and set the policies. There are many within those organizations that do not agree. We don’t really know how many as it’s very career limiting to defy your group’s leadership. Occasionally a brave one in a secure position will speak out. But in the IDSA, they enforce their Lyme guidelines very strictly. IDSA docs are not free to use clinical judgement in treating Lyme.

          No, my eyes are wide open. That happens when you go through the late stage Lyme wringer. I’ve asked far more questions than you can imagine.

          I am indeed confident I have Lyme Disease. I have laboratory evidence, symptoms, and even saw a tick and a rash a few days before acute illness kicked in. I can still feel it in my body. I know what it feels like because I’ve been sick for years. Why would I think I am mistaken? That would be a sign of cognitive loss or mental illness.

          1. weing says:

            “Why would I think I am mistaken? That would be a sign of cognitive loss or mental illness.”

            Holding out the possibility that you may be wrong is a sign of cognitive loss or mental illness? Very interesting.

      2. Harriet Hall says:

        Maybe all those organizations came to the same conclusion because they read the same published evidence.

        I ask again, Scientists who question the existence of CLD have read all those published papers. They didn’t think they constituted proof. Do you understand their reasoning? What do you think motivated them? Why would they not want to recognize a new disease and get kudos instead of criticism?

        1. RedKat says:

          As to your question about why health officials and researchers wouldn’t want to acknowledge a new illness or a better treatment, I am baffled.

          I can only guess that it has a combination of factors behind it, such as power, financial gain, maintaining a reputation, protecting colleagues, reluctance to admit mistakes, not wanting to admit their actions have resulted in great harm to others, not wanting to admit they’ve falsely destroyed others’ careers, fear of being rejected by colleagues, et.al. Some of these are very powerful motivations.

          There is a tremendous number of examples where the CDC has contradicted itself and its own data, and made decisions that just don’t make sense. I couldn’t possibly list them all here.

          But one big one is giving Yale University responsibility for a Lyme risk map, which they put out every year using taxpayer/CDC funds. It only shows east of the Mississippi, failing to mention all the Lyme cases in the west which have been documented going back to the 60′s.

          It shows low/no risk almost everywhere except New England and the upper Midwest. They say that in these low/no risk states, there’s no Lyme, and so a positive test should be considered a false positive unless a patient can prove exposure in a “highly endemic” area. It ignores the fact that locally acquired Lyme has been reported in every state.

          Reporting standards vary by state and even county, leading to inconsistent results and distorted numbers, reducing the count outside the highly endemic areas. This defies the whole purpose of surveillance. And they fail to mention that Allen Steere recently showed that false positives are indeed rare. This message that the tests are reliable in some states, but unreliable in others would be laughable if it weren’t tragic.

          An IDSA doc recently reminded colleagues at a conference that a patient with an EM rash must always be treated for Lyme as the rash is definitive for Lyme Disease. Apparently many docs don’t know this. The guidelines say don’t treat without a positive test. The message that the tests are often false negative in the first month, which is when the rash usually appears (if at all), didn’t get communicated very well. Some patients with an EM rash are told “No Lyme” when their test comes back negative, and they progress to chronic Lyme. Again, contradictory.

          Based on the CDC and Yale’s map, people with an EM rash and even a positive test in the South or Midwest and even the West are sometimes denied treatment, because “There’s no Lyme here.”

          Yet again, this is completely illogical. An EM rash is always definitive for Lyme. Period. Ticks do not respect borders, nor do the birds and animals they travel on. And people travel. Why the varying standards and denial of diagnosis and treatment outside the highly endemic areas?

          Researchers across the South have documented Lyme carrying ticks and one at UNF has even scientifically proven that the Lone Star tick transmits Borrelia to humans, including species other than Bb sensu stricto. The CDC is silent on this, and Yale continues to put out maps saying there’s no Lyme in the South and only deer ticks transmit Lyme. No wonder there’s such inconsistency in what doctors believe about Lyme. The message is muddled.

          Lyme has blown up into a serious public health issue while health officials and doctors put their heads in the sand, limiting their discussion of Lyme to the narrow little box that was described by Allen Steere in the 70′s of swollen knees and headaches. Instead of showing good leadership in how Borreliosis is so much bigger than just Lyme Disease, the Lyme Disease Committee continues with their outdated, New England centric views and ignore evidence that contradicts their unchanging opinions. They’ve truly botched their handling of Lyme Disease. The raging controversy is a testament to that.

          I have no idea why they do this or how they maintain status as “experts.” Many of these other researchers expanding our knowledge of Borrelia are also frustrated and tired of being ignored. A new generation of experts is coming up, but the old ones are still entrenched.

          I think the primary reasons for the controversy are as Max Planck said: scientists who have spent a career on a belief, who have published about it and taught it to others, are the last ones to admit (if ever) that they are wrong. A new scientific principle often has to wait for the older generation to step out and a newer generation to step in, one who grew up with the new idea and who are more open to it, before it is widely accepted.

          I think proof of CLD would be like a virtual b*mb going off in the IDSA and Lyme groups at the CDC & NIH. There would be much to answer for.

          I encourage you to read Pamela Weintraub’s “Cure Unknown.” She is a respected science writer and editor and put about 6 years of research into the book. It’s excellent.

          1. weing says:

            “An IDSA doc recently reminded colleagues at a conference that a patient with an EM rash must always be treated for Lyme as the rash is definitive for Lyme Disease. Apparently many docs don’t know this.”

            I was taught not to even bother testing in such cases. Just treat.

            1. RedKat says:

              I am very glad you were taught correctly to always treat the EM rash. But I can’t tell you how many people I’ve interacted with who are suffering from late stage Lyme who were refused treatment because of a negative blood test, or because the tick bite that preceeded their rash happened in Texas or Georgia or North Carolina or Utah or Washington…

              Misinformation about Lyme, even the parts that aren’t disputed, run rampant through our medical profession.

          2. WilliamLawrenceUtridge says:

            As to your question about why health officials and researchers wouldn’t want to acknowledge a new illness or a better treatment, I am baffled.

            It sounds like they did that, when Lyme arrived. As for why they aren’t acknolwedging chronic “Lyme” diesease, the reason might be that it is still speculative, that the symptoms are too diffuse and explicable through too many avenues, and that the evidence isn’t strong enough to support it.

            I can only guess that it has a combination of factors behind it, such as power, financial gain, maintaining a reputation, protecting colleagues, reluctance to admit mistakes, not wanting to admit their actions have resulted in great harm to others, not wanting to admit they’ve falsely destroyed others’ careers, fear of being rejected by colleagues, et.al. Some of these are very powerful motivations.

            What financial gain? The only people who seem to be making money off of CLD are the LLMDs from what I can tell. Someone could also make a reputation if they could elucidate a novel biochemical pathway leading to a consistent set of symptoms, and there are myriad diseases, now known by eponyms, that assemble an otherwise-unremarkable set of symptoms into a novel diagnosis that can be empirically validated. That’s an awful lot of speculation, and not very much proof that any one item applies.

            But one big one is giving Yale University responsibility for a Lyme risk map, which they put out every year using taxpayer/CDC funds. It only shows east of the Mississippi, failing to mention all the Lyme cases in the west which have been documented going back to the 60′s.

            Here is a map put out by the CDC of Lyme cases found in each state, per year. Every year, every single state has at least one dot in it (except for the big square one in the middle. So there are Lyme cases from the 2000s that are found west of hte Mississippi.

            It kinda seems like you’re taking a “shades of grey” issue and turning it into a “black and white” issue.

            A new scientific principle often has to wait for the older generation to step out and a newer generation to step in, one who grew up with the new idea and who are more open to it, before it is widely accepted

            Are you the guy that keeps talking about Marshall and ulcers and how the paradigm changed? Or do you keep bringing up HIV/AIDS? Or is that someone else?

            My point is – with evidence, practice and beliefs change. CME credits are given to doctors to ensure they keep up with evidence. My ultimate point is – you still don’t have convincing evidence. Hopefully you are close.

            1. RedKat says:

              No, I’m not the one talking about Marshall or HIV.

              I do know a doctor who is head on an ER nearby and he said, “There no Lyme in … (our state)!” in spite of the hundreds of cases reported to the CDC (which is only 10% or less of the actual number).

              This is also in spite of the fact that our state has documented Lyme carrying Ixodes ticks in every single county except 1, although they stopped testing 10 years ago due to the cost. There was a Lyme infected tick found in a small survey a block behind my house 10 years ago, and yet doctors here are still oblivious. I went through a dozen of them and none thought of Lyme or Babesia or Bartonella and none knew anything about it.

              There’s no way I wanted to hear that I had Lyme + Bart + Babs. These are horrific diseases. After being blown off by some highly reputable doctors, who gave me pain meds and no diagnosis, I had a life threatening and terrifying incident. Enough was enough and I shelled out a great deal of money for extensive testing and a consultation with an LLMD. Lo and behold, my Western blot was positive as was my B. Henselae test. And I started getting better within a couple weeks of abx. A drop in the bucket, though, as I had a long way to go. Mistreatment with steroids had made me severely ill. There’s no way I’d be spending my savings on a placebo.

              BTW, my insurance is paying for the vast majority of my care. In the recent CDC study that concluded 10X the admitted infection rate, they also acknowledged that well over half of all identified Lyme patients in the study had been treated for longer than the guidelines say. That speaks volumes.

              Funny how you say you don’t want to hear our stories, but then dismiss our experiences using the propaganda from the Lyme Commitee. How can you know what I’ve been through or draw any conclusions from assumptions?

              The incredible frustration so many chronic Lyme patients feel is when people like yourself are so sure that you’re right, simply because you believe at face value what certain officials and “experts” have said. You seem to have enormous faith in the process by which they came into those positions, as if there were an honesty screening device that only allowed people who have pure motives and honest hearts into those roles.

              While we can’t convince you with our own stories, and we apparently can’t convince you with the myriad of scientific evidence already in existence, would you at least consider that you don’t have all the answers either? To sit back and say, Well, because the IDSA Lyme Committe said “this”, thier words constitute absolute fact and the burden is yours to prove them wrong, is an unfair stance to take.

              I’d prefer you’d admit that there is no proof for your opinions and that they’re based on your faith in certain individuals, those whom the chronic Lyme crowd are crying, “False!”

              1. WilliamLawrenceUtridge says:

                You’re not promoting Marshall, but it is practitioners like the ones I linked to who are, and who give a stink of quackery to the treatment of CLD.

                And I started getting better within a couple weeks of abx.

                I’ll note that “a couple weeks” is within the window of the NEJM clinical trial of Lyme antibiotics which is so soundly criticized for being of inadequate length.

                BTW, my insurance is paying for the vast majority of my care. In the recent CDC study that concluded 10X the admitted infection rate, they also acknowledged that well over half of all identified Lyme patients in the study had been treated for longer than the guidelines say. That speaks volumes.

                About what? That doctors should be following the guidelines? One certainly can’t draw anything causal from it.

                Funny how you say you don’t want to hear our stories, but then dismiss our experiences using the propaganda from the Lyme Commitee. How can you know what I’ve been through or draw any conclusions from assumptions?

                What’s funny about it? You are attempting to use anecdotes to convince me, I know anecdotes are flawed, and I respond with the scientific consensus. That’s how science and medicine is supposed to be done. If I replied to your anecdote with my own anecdote about a friend of mine who was bit by a Lyme tick, complete with a bulls-eye rash, got two weeks’ antibiotics and was fine (I have such a friend, by the way), THAT would be unscientific. Or perhaps not; a well-chosen anecdote that represents the scientific literature is an excellent and valid rebuttal to the stories told by chronic “Lyme” disease patients.

                While we can’t convince you with our own stories, and we apparently can’t convince you with the myriad of scientific evidence already in existence, would you at least consider that you don’t have all the answers either? To sit back and say, Well, because the IDSA Lyme Committe said “this”, thier words constitute absolute fact and the burden is yours to prove them wrong, is an unfair stance to take.

                I’d prefer you’d admit that there is no proof for your opinions and that they’re based on your faith in certain individuals, those whom the chronic Lyme crowd are crying, “False!”

                Read my comments a bit more closely. They are mostly about pointing out that the science is not convincing to relevant experts. My point, for over a month now, has been that you don’t need to convince me, I don’t care. You need science to convince genuine experts. The science ventured by CLD advocates so far has been inadequate to convince infectious disease doctors. The “worst” I have said about CLD patients is that their certainty in the cause of their symptoms is unwarranted, that while they may have symptoms that are genuine, the real issue is the lack of adequate evidence that their symptoms are due to Lyme disease. It may be due to Lyme, but, and here is the point that you are missing both here and elsewhere, it may not be. You don’t know, and your conviction that your symptoms are due to Lyme is unwarranted.

                That is my point, and I’ve repeated it many times.

      3. Harriet Hall says:

        Skeptics have made it clear what it would take to convince them you are right: simply the same standards of proof that are required for all science.
        What would it take to convince you that you are wrong? Could any amount of evidence from scientific studies ever do that?

        1. RedKat says:

          To convince me I am wrong about Chronic Lyme, would be difficult as I can feel it in my own body. I have plenty of evidence of Lyme. Long term antibiotics have resolved most symptoms, but a few stubbornly remain. My greatest struggle now is mostly with Babesia and Bartonella. To doubt my illness would indicate that I have cognitive problems or even mental illness.

          It’s difficult to prove something doesn’t exist. To be convinced there is no CLD, I would need to see new, highly reliable testing that shows up negative on all who claim CLD, myself included. It must be irrelevant of antibody levels, which are unreliable in determining infection before or after treatment. Even if only a few test positive, then we must acknowledge that the illness exists, even if it’s uncommon. Such a test must be validated against varying strains of all known species, unlike the current tests.

          Why isn’t such a definitive test a top priority for the CDC or the IDSA? Think of all the irritating Lyme ‘loonies’ who would be quiet and go away if they could prove they’re not really infected. Are they afraid such a test would prove them wrong?

          It’s unlikely I can be convinced there’s no chronic Bartonella or Babesia, I have plenty of evidence of both and they have been acknowledged and documented by doctors who don’t necessarily believe in CLD.

          Bartonella is turning out to be far more common that previously realized. It may very well be an epidemic of its own. Testing is poor and doctors are mostly unaware of it. Some people who think they have CLD might have chronic Bartonella, as so many of the symptoms overlap.

          Sadly enough, the CDC info on Babesia is so poor, they don’t acknowledge that at least half of patients will test false negative. Amazingly, they say not to treat it without positive lab confirmation. This policy says to leave about half of sick patients untreated with an illness that is known to kill people when left untreated.

          Without a good test, why can’t they give good guidelines for how to make a clinical diagnosis? When did medicine begin to worship at the altar of unreliable lab tests? I think their policy is that in the absence of certainty, do nothing. This is unacceptable in talking about human lives, especially when we have the ability to treat people.

          This is just another example of inexplicable policies from the CDC on a poorly understood disease and why one cannot blindly accept their statements or explain their behavior using logic or common sense.

          1. Harriet Hall says:

            “I can feel it in my own body”
            “To doubt my illness would indicate that I have cognitive problems or even mental illness.”

            Sure you can feel something is wrong. No one is doubting your illness. The question is whether what you feel in your own body is chronic Lyme disease and whether antibiotics will resolve your problems. One CLD sufferer has been on antibiotics almost continuously since 1987 and is still not well. And you still have symptoms that stubbornly remain. And the LLMDs started by recommending long-term antibiotics and then they went on to postulate multiple infections and to add treatments like IV bismuth and colloidal silver because their original diagnosis and treatment was not working. I find all that very suspicious.

            Are you at least willing to admit there is a possibility that your symptoms might be due to some other cause or causes and that the tests you rely on might be unreliable and misleading?

            1. RedKat says:

              It’s hard to know exactly what’s causing everything I’m feeling as I’ve had multiple things going on. One doctor coined the phrase “The Lyme Complex”, because “Lyme Disease” was just way too simplified. This is very appropriate given the multitude of issues many chronic Lyme patients have.

              In the first months after I was diagnosed, my LLMD found not only Lyme and Bartonella, but h.pylori, campylobacter, excessive candida, and parasites (all through lab testing), not uncommon secondary problems in immune suppressed chronic Lyme patients. (My immune system was indeed suppressed. I had seen an immunologist/allergist and my IgG/IgM levels were low and all my lifelong allergies had disappeared according to blood tests. One bummer of treatment is that as my immune system began to recover and start fighting back, my allergies came back).

              My Babesia diagnosis came later. I initially tested negative 3 times, so it was not easy to diagnose. Only after the other two illnesses were knocked down quite a bit did it become apparent I had Babesia. I’ve had a rough time with it. I probably had a relatively high load of the parasites by the time we started treating it. It was amazing how much sicker I got when we started killing them off. My poor spleen swelled up for months, working overtime to filter out the damaged RBCs. I could feel it pushing up against my stomach and ribs from the inside within an hour or two of taking my meds. What a creepy feeling.

              Currently, I have more Bartonella and Babesia symptoms than I do Lyme. I only have a couple Lyme-specific symptoms left, but then several of my symptoms are common to one or more of these illnesses. The fatigue is common to all 3. It’s hard to know which is causing which of these common symptoms. But as long as I have any that are specific to Lyme, we’ll keep treating it. I switched to a less powerful anti-Lyme abx a few months ago, and within 1-2 months I really deteriorated. If I were just imagining this whole process because my doctor tells me what I want to hear, I guarantee you I would have been well a long time ago on the first medicine I took. Wishful thinking does not eliminate entrenched infections, though.

              Since Lyme studies have carefully excluded any other illnesses, no one understands the dynamics between Lyme and other infections very well except for those who have treated many such patients in a clinical setting. One doctor wrote that he contacted the CDC to inquire about studies into multiple infections and they said there weren’t any. Not only that, but the 3 that most commonly occur together, Lyme, Bart, & Babs, are each assigned to different research groups and are being studied separately. The IDSA Lyme Committee has been taking more note of Babesia in recent years, so this is an improvement, but there’s still a long way to go in recognizing how wide spread and common it is.

              Believe me, both patients and doctors desperately wish there were studies on multiple tick borne infections to identify the best approach. The synergy between them is hard to quantify. My LLMD adjusts treatment to each patient based on what works or doesn’t work in that patient, especially when it comes to Babesia.

              Considering the extensive testing I had done and numerous specialists I saw with no answers or diagnoses, I just don’t see what else I could possibly have, other than another unknown, hidden infection that mimics Lyme. I’ve been tested for the additional known ones and come up negative. It’s very possible I have something we haven’t yet identified that is interfering with my treatment or slowing my recovery, but I believe this would be in addition to Lyme, not in place of it. If I didn’t have Lyme, why’d I get worse as soon as I switched to a weaker med?

              I do not have any immune dysfunction, so that’s not it either. I was healthy before my tick bite, and like so many other Lyme patients, we tend to roll our eyes when doctors dismiss our claims saying we have “something else.” Numerous reputable specialists couldn’t find “something else,” so if it’s not Lyme, it’s something completely unknown to medical science today and it only shows up in Lyme patients. A month’s worth of abx just scratched the surface of my illness, while several months eliminated numerous symptoms. A couple months off abx to let my body rest resulted in worsening symptoms, not improvement. So unless it’s a previously unknown tick borne pathogen or dormant illness awakened by Lyme, it’s Lyme.

              In the absence of proof, the most likely answer is usually the right answer. When a condition behaves like an infection and responds to treatment like an infection, it’s most likely an infection.

              1. Harriet Hall says:

                “LLMD found not only Lyme and Bartonella, but h.pylori, campylobacter, excessive candida, and parasites (all through lab testing)”
                False positive lab tests are common, especially for uncommon diseases. Indiscriminate testing is almost guaranteed to find positive tests that don’t mean anything.

              2. weing says:

                “My poor spleen swelled up for months, working overtime to filter out the damaged RBCs. I could feel it pushing up against my stomach and ribs from the inside within an hour or two of taking my meds. What a creepy feeling.”

                Interesting. Did you have an ultrasound done?

              3. WilliamLawrenceUtridge says:

                Candida you say? Yeah, real candida has a pretty obvious presentation. Candida as a vague cluster of symptoms is another hallmark of quackery, and the fact that it was diagnosed raises questions about your practitioner. Did you have frank thrush? Or vaginitis? If not…you might not have candida.

              4. James says:

                I wonder when people talk about Candida (in woo terms) I think sometimes they are confusing any type of mold with the specific strain Candida.
                Maybe they are trying to talk about a mold infection or mycotoxin poisoning.

                This why people should not try and diagnose themselves (three fingers are pointing back at me).
                Too much noise to easy to get confused.
                Hell I do not even believe doctors should diagnose without being aided by software (of course I am biased).

              5. RedKat says:

                Interesting. Most CLD critics say if I don’t have laboratory confirmation, then I must not have that problem. Many of the Lyme Deniers dismiss us by saying we have no “proof” we ever had Lyme (only because we don’t have the hotly contested positive CDC testing).

                But now Dr. Hall calls tests ordered based on my specific symptoms “indiscriminate” and says positive tests don’t mean anything. If I didn’t have h.pylori, then why did I test positive for it and why did my stomach pain decline significantly after I took a PrevPac?

                I am baffled as to why you so strongly doubt everything I say about my own treatment, even when it’s not Lyme. My own GP of 15 years believes me and she’s a by-the-book, conservative physician. She’s been very clear I need to stay on the beta blocker she prescribed for me for my tachycardia and irregular heartbeat until my heart is back to normal (it’s not yet). She absolutely refuses to give me Ambien for my occasional insomnia because she thinks it’s too dangerous. No one thinks she’s a quack.

                Every single one of the over dozen doctors I saw first ordered tests for me to try to figure out what was going on, including the ER docs and hospital docs. It would be irresponsible medicine not to run tests on someone whose illness isn’t obvious.

                And if the tests are so unreliable, then why are you all badmouthing a clinical diagnosis as being irresponsible medicine? I personally don’t see how a lab test can find excessive creatinine in me repeatedly without it being a string of lab errors. I also don’t see how a lab can find species-specific antibodies if they’re not actually there, again, unless the lab is incompetent.

                So which is it? Laboratory evidence is necessary and it’s dangerous or irresponsible to treat without it? Or laboratory evidence is unreliable and personal opinion of the doctor should always override the lab tests?

                It seems to me that a best approach is a combination of both, with tests contributing to a doctor’s good judgement for a clinical diagnosis. Being wrongly enslaved to test results is why so many people with an EM rash are still denied Doxy when they test negative. The test is actually a waste of money in these cases.

                I know one patient whose doctor called her up and told her to stop taking the Doxy when the Lyme testing came back negative a few days later. Of course she ended up with disseminated Lyme a few months later, but because her insufficient Doxy treatment interfered with antibody production, she was now testing false negative and couldn’t get diagnosed. This is idiotic. She had an EM rash and insufficient treatment by anybody’s standards. There should be no question she needs further treatment.

                William – Yes I did have an ultrasound. I also had two different doctors and a P.A. palpate my bloated belly (which was how my doc knew it was enlarged in the first place). Lots of monitoring of that scary symptom. A pulmonologist also confirmed I didn’t have asthma or any other lung disease to explain my air hunger and shortness of breath. (I was diagnosed after she told me she didn’t know what was wrong with me. In a follow up later, she felt bad that she didn’t think of Babesia and said my air hunger was consistent with it. She also said that testing for Babesia is poor.)

                As far as candida, I did indeed have thrush, although the GI test showed excessive candida shortly before the thrush appeared. I also had a bloated midsection after eating. I’ve seen scope photos (of someone else) of an intestinal lining coated with white candida colonies, so having candida in the intestines is documented. It’s also been shown in studies to form biofilms which make it difficult to get rid of. My gut is calmer when I keep the candida under control.

                Candida symptoms can be vague and it’s not a well understood issue. I wish we had more studies on it. I know a lot of people with vague GI issues who might have it, but until we know more about it, doctors and patients alike are unaware of it.

              6. WilliamLawrenceUtridge says:

                RedKat, I simply don’t find your personal circumstances and testimonials to be anywhere near so convincing as the two panels of infectious disease experts convened to discuss the issue – both agreeing that the criteria developed was sufficient. You can talk about your symptoms and treatment, you can discuss conspiracy theories involving insurance companies, but I prefer to believe the large panel of experts over even your visibly profound beliefs regarding the etiology of your suffering.

                When the experts change their mind, I will pay attention.

            2. RedKat says:

              IV bismuth was clearly inappropriate and dangerous. I still don’t know why doctors keep bringing this up as if all LLMDs were doing it. A tiny number of doctors did it and they should have lost their medical licenses for dangerous practices. They are widely condemned.

              Colloidal silver is interesting… While maligned for years as “dangerous” (turning grey or blue isn’t exactly dangerous, just ugly), a new generation of researchers is starting to do some actual scientific studies. One study at Yale showed that a tiny bit of CS combined with antibiotics were many times more effective at killing bacteria in vitro than the antibiotics alone. It shows the idea that CS can indeed be helpful in treating bacterial infections. Need more studies…

              I personally think it’s a much better idea to have a controlled amount delivered with an antibiotics (manufactured together) than for patients to just take however much on their own at home. I’m all in favor of further studies. I suspect there are more examples like this where are disputed substance can provide benefit, but we need good scientific studies to figure out how and how much and for how long.

              My doctor did not postulate multiple coinfections after Lyme treatment didn’t work. Your bias is showing in your assumption. ;)

              I showed b. henselae antibodies and symptoms and was diagnosed with both Lyme and Bartonella at the same time. I was not diagnosed with Babesia up front because I tested negative 3 times, did not respond to commonly used anti-Babesia/anti-Malarial herbals (such as artemisinin), and did not have enough definitive signs of Babesia that couldn’t also be Lyme.

              Only later, as the Lyme and Bartonella got better (my treatment was indeed working), did it become apparent that I had Babesia. I had a strong response to an herbal, so a week later I was put on pharmaceuticals. Then it became painfully obvious I had Babesia as I got worse. I’ve had night sweats, daytime sweats, heart issues, kidney issues, swollen spleen, headaches, worsened fatigue, brain fog, and worst of all, chronic air hunger. I’ve had frightening incidents of respiratory distress. I am still struggling with some of these symptoms, so I’m beginning to conclude I have a treatment resistant strain (also documented in medical literature).

              My doctor doesn’t treat something unless he’s confident it’s there. In hindsight, I think we should have treated my Bartonella relapse 4 months before we did, but he waited until it was obvious. All the accusations about how they diagnose everyone with Lyme and make up coinfections to justify ongoing treatment are really just baseless accusations by people who’ve never been to one.

              And yes, lab tests are unreliable. However, they are rarely false positive. It’s the false negatives that are the problem.

              1. Harriet Hall says:

                You can’t deny that the original hypothesis involved only persistent Lyme, and that co-infections were a later hypothesis.

              2. RedKat says:

                Coinfections are indeed one hypothesis to explain many of the chronic Lyme patients. I have heard plenty of stories about people with chronic Lyme by itself, but in my experience, those with only musculoskeletal Lyme by itself aren’t usually as sick as the people with Neuro Lyme or any kind of Lyme with coinfections.

                The primary theory behind chronic Lyme is biofilms. Over the last 10 years, biofilm research has shown that pathogens in biofilms function like little communities with multiple different pathogens coexisting in one biofilm Also, research shows that it’s nearly impossible to penetrate and kill them all with just antibiotics. Researchers admit they don’t know how to dissolve a biofilm. And these studies have nothing to do with Lyme.

                Because no one was able to see a Lyme biofilm in a culture, the medical establishment decided it wasn’t possible and pronounced this theory as false.

                But a few years ago, Dr. Eva Sapi successfully grew a Lyme biofilm in the lab. She and her researchers did so by adding collagen to the medium. You can see videos and slides on YouTube. The bacteria begin form biofilms rather quickly, even in the absence of adverse conditions or antibiotics.

                Look at what the body of evidence says about biofilms being the source of chronic infections and they’re resistance to treatment, and then acknowledge the research showing Lyme can form biofilms, and you get a big fat arrow pointing towards persistent Lyme infection. (I can write a separate post about how antibody testing is so problematic and a part of this controversy.)

                Now, we just need the Lyme Deniers to stop denying the evidence and get busy moving the research forwards.

      4. vadaisy says:

        The trials you mention that had trouble finding enough patients did so because their LLMDs knew the study was a set up to fail. They were clear in stating that their patients needed many months or even years of treatment, but the study was only going to give them a 2nd month (given some duration of time after the 1st month of treatment failed to resolve their symptoms). Patients and LLMDs alike complained about this study before it started, but they were assured that this was only the first in a series of studies to determine appropriate length of treatment. They lied. You can talk to Phyllis Mervine on this topic. She was the patient liaison on this study with first hand knowledge of the betrayal.

        If the studies could not get enough patients to enroll because they were dissuaded by their “LLMDs”, and as you imply by Phyllis Mervine, then why and how would you expect anyone to hold subsequent studies, and for whom? No enrollment, no study. This is similar to what happened with the vaccine – it was derailed. That’s not betrayal, it’s common sense and good business. Patients are directed to not participate or cooperate, and when the study or whatever is derailed due to lack of enrollment, the same patient/activists call it betrayal and a government conspiracy. Ms. Mervine should comment here and explain those actions.

        1. RedKat says:

          They got enough patients to do their study, although it was harder and longer in coming that they expected. It was not derailed.

          The vaccine failed all by itself. The reason the lawsuit over it has not been dismissed is because the plaintiffs have a good case that GSK covered up adverse events in testing. Some of the plaintiffs are patients who were in the final study and reported adverse events, but then the final report insisted there weren’t any. The plaintiffs have refused to settle so far because they want the truth to come out in court.

          The story that GSK pulled it because of poor sales is a convenient blame-the-patients-&-LLMDs cover for the fact that the CDC told them if they didn’t pull it voluntarily, the CDC would order it pulled. It was making too many people sick. One theory is that it triggered Lyme in people with dormant infections.

          Besides, Lyme isn’t well suited to a vaccine. LymeRIX required 3 shots aat specific intervals and was only good for 2 years. Why do we need this if Lyme is “hard to get and easy to treat,” as we’ve been told for years? Why couldn’t those tens of millions of development dollars have been spent on a better test instead?

          The Gardasil HPV vaccine has been linked to the deaths of 144 people so far, with 981 people disabled by it, mostly by neurological damage. The risks are not being disclosed in the big marketing push to convince parents to vaccinate their kids. The poster at my doctors office just said it would help prevent cervical cancer. It didn’t mention there’s a chance it would cripple or kill my kid. We deserve the right to weigh the risks and make our own decisions.

          As you can imagine, my distrust level of the CDC is high these days. (In general I’m pro-vaccine, but only of the tried and true ones.)

          1. Harriet Hall says:

            “The Gardasil HPV vaccine has been linked to the deaths of 144 people so far, with 981 people disabled by it, mostly by neurological damage”

            That’s a lie based on a misunderstanding of the VAERS system. Anyone can report anything that happens after a vaccination to VAERS, but temporal correlation doesn’t mean causation. There have been VAERS reports of deaths, but they were not more frequent than among unvaccinated people. After 40 million doses, no deaths have been attributed to the vaccine. See http://www.forbes.com/sites/matthewherper/2012/05/03/here-is-how-we-know-gardasil-has-not-killed-100-people/ (2 pages, be sure you read both pages)

            1. RedKat says:

              I would very much like to know more information about this vaccine. What use is an adverse events database if anybody can add anything to it, substantiated or not? Does the CDC follow up and substantiate every case? Why do they tell us how many deaths are linked to it without tellings us what’s real?

              Some reports I’ve read of serious permanent neurological damage (such as uncontrolled seizures) due to the Gardasil HPV vaccine do indeed appear to come from the vaccine. One girl in our area died of severe neuro problems shortly after her 3rd shot, and the parents said the CDC confirmed to them that there was a rare chance of death.

              So how many actual deaths are there? How many actual disabilities are there? Without this information, the fear mongers can run amok OR the vaccine seller can get away with covering up the real risks.

            2. WilliamLawrenceUtridge says:

              If you are interested in VAERS, in addition to the Forbes article Dr. Hall linked to, you can search on this site. Here is an article discussing it. You are not an informed consumer busting medical myths by the way. You are repeating tropes used by antivaccinationists, and other proponents of complementary and alternative medicine – an approach to medicine defined as “a set of mutually-contradictory explanations for illness and health predicated on wholly untested, or tested and disproven, approaches to treatment”. Seriously, CAM is made up of either treatments that are proposed to work but not adequately tested for safety or efficacy (most herbal preparations) or treatments that have been tested and failed but not rejected (homeopathy). There is also a third category – the adoption of proven mainstream treatments that have been tested and found effective, that are rebranded as “alternative”. So somehow eating your fruits and vegetables, getting enough exercise and sleep is “alternative”, despite doctors recommending all of these things for many, many years.

              The more comments you make, the more questionable your sources of information appear. If your doctor is attempting to convince you of the malfaesance of the medical system because of candida, or the adverse events of vaccines reporte through VAERS, he is lying to you, or horribly ignorant.

              There is, by the way, another adverse events reporting system whose use is restricted to doctors only, and it is generally seen as far more reliable than VAERS (my apologies, I forget the name; if you read through the documents discussing VAERS here or at Respectful Insolence, Dr. Gorski has identified it in the past).

              1. RedKat says:

                Ummm…No one has said anything about “malfeasance” of the medical system about candida except you. I’m only aware that it’s not well understood or known, and that I showed high levels of it in a GI test. My doctor didn’t say anything other than that we needed to get it under control. I hadn’t heard it was a subject of quackery until your comment. Why do you condemn me based on assumptions?

                Regarding the vaccines, I was not aware that no one validates the cases reported to the databse. I read the Forbes article and it is interesting.

                But I do have one major issue with it. The author says he tries to find meaning in the numbers by comparing death rates reported after the vaccine to death rates in the general population. Since they’re about the same, he concludes that we can’t attribute any deaths to the vaccine.

                But this is a faulty assumption. No self respecting person would report the death of a girl who died in a car accident after getting a vaccine as a vaccine adverse event. Comparing rates of a group of people who died suspiciously after a vaccine to rates of a group of people who died of any and all causes is not an even comparison.

                If all the reported deaths and disabilities are otherwise unexplained, then it deserves further research and shouldn’t be dismissed, especially if those suspicious deaths are very similar to each other. But this information isn’t available to draw a firm conclusion either way. As I see it, the vaccine might have caused no deaths or disabilities, or perhaps it has caused all the ones reported.

                I posted what I did because the CDC confirmed to local
                parents of a girl who died shortly after the vaccine that the vaccine could indeed cause death on rare occasions, and then I read the stats in the adverse events database. The parents were angry because the risk, however small, wasn’t disclosed to them until after their daughter died. I have a daughter. Whether deaths are 5 or 100, I want to know it’s possible before I make a decision. She’s had every recommended vaccine so far, but no one ever told me that any one or more of them might kill her. This was news to me.

                I don’t consider myself a mythbuster, except for Lyme Disease. But even then I don’t know everything. Neither does anyone else on this forum. My point is that the CDC doesn’t cultivate trust when they withhold information, make statements that aren’t factual, and use faulty science to justify ignoring suffering patients. They told people the LymeRIX vaccine would be great, and it was a failure. There’s a pattern here of saying things that aren’t always true. Of course I’m skeptical of what they say. They haven’t earned my trust. You can choose to believe everything they say, but I’m not sure why given their track record. I need validation first.

                I hope you notice that you’ve made imperfect statements before, and yet that doesn’t invalidate everything you say. Please stop playing “Gotcha!” with me in order to discredit everything I say.

              2. WilliamLawrenceUtridge says:

                They told people the LymeRIX vaccine would be great, and it was a failure. There’s a pattern here of saying things that aren’t always true.

                Yeah, that’s because you don’t know until you do the research. Science is hard, complicated, and in cases like vaccine adverse events, limited because the base rates are so low that it’s hard to tell if the vaccine is even causative. There’s a difference between “saying things that aren’t true” and “saying things that are likely, but uncertain and untested”. Faulting doctors because they don’t know the future isn’t fair or realistic.

                Here’s a question – did your “Lyme” infection cause your immune suppression, or did your immune suppression cause your “Lyme” infection?

                Yes, I definitely do stitch together comments, and given the length of the thread it’s probably comments from multiple people whom I mix with you. It’s part laziness, and part indifference to your personal stories, and part frustration that my central point seems to be missed – you simply can’t justify the certainty demanded by Lyme patients based on the evidence currently available, and certainly not based on the individual outcomes of single patients. You have all made your points – you are suffering, and you are sure you know what caused it, and the CDC is ignorant if not outright malicious. You are frustrated. Some of you resort to threats and demonstrations. I’ve made my points – your certainty is unfounded, your symptoms have no confirmed absolute etiology, and your problem is the lack of evidence. What else do you want me to say?

              3. RedKat says:

                “Here’s a question – did your “Lyme” infection cause your immune suppression, or did your immune suppression cause your “Lyme” infection?”

                I was healthy before the infection. I think both Lyme and prednisone (for the misdiagnosis) together did a great job of suppressing my immune system.

                “Yes, I definitely do stitch together comments, and given the length of the thread it’s probably comments from multiple people whom I mix with you. It’s part laziness, and part indifference to your personal stories, and part frustration that my central point seems to be missed – you simply can’t justify the certainty demanded by Lyme patients based on the evidence currently available, and certainly not based on the individual outcomes of single patients. ”

                I greatly appreciate your honesty. I have heard your central point and I fundamentally disagree with it. I just don’t see how you can say that we can’t be certain when you haven’t experienced what we have. That’s just not a judgement that you can make.

                “You have all made your points – you are suffering, and you are sure you know what caused it, and the CDC is ignorant if not outright malicious. You are frustrated. Some of you resort to threats and demonstrations. I’ve made my points – your certainty is unfounded, your symptoms have no confirmed absolute etiology, and your problem is the lack of evidence. What else do you want me to say?”

                Thank you for acknowledging mine and others’ points. I know I appreciate it. I can’t speak for what others say, only for what I say.

                “What else do you want me to say?”

                I want all of you to admit what you (William) just did… that in the absence of hard, scientific proof, you have chosen to believe the IDSA Lyme Committee and everyone else who follows them.

                But I want you also to acknowledge that some of the components of official Lyme dogma are incomplete, out of date, or simply opinions that are in dispute, not the set of proven facts that have been portrayed.

                I want you to acknowledge that there are valid doubts, questions, and concerns about the “official” positions on Lyme based on real life experiences and scientific evidence and studies.

                I want you to stop repeating the IDSA & CDC’s opinions as absolute, proven fact and therefore stop telling those who claim CLD that their illness “doesn’t exist.”

                I want you to say that it’s possible, just possible, that the CLD crowd is right, because after all, there is no evidence proving us wrong, there is evidence suggesting we’re right, and you can’t possibly know what we’re going through and whether our stories are believable or not.

                I want you to say that it’s easier to require a theoretically perfect level of scientific “proof” in order to believe something when it’s someone else’s illness. It’s a whole different standard when it’s you or your own loved one. There are many “foxhole conversion” of people (including doctors) in the trenches with late stage Lyme Disease or CLD.

                If people would just realize and acknowledge that the “official” voices on Lyme Disease have been dishonest and contradictory and that the studies they quote to deny our illness are inconclusive and biased, then you’d also question what they say. That’s the beginning of finding the truth.

                As long as people continue to grant these “experts” the benefit of the doubt without question and assume whatever they say is truth, these “experts” can continue to perpetuate false statements that result in the suffering of untreated and undertreated Borreliosis patients and their families.

                I greatly appreciate you asking the question, even if you don’t like my [extended] answer.

              4. vadaisy says:

                A deplorable article by Suzy Cohen on Huffington Post is titled “Feel Bad? It Could Be Lyme Unless Proven Otherwise.” It consists of irresponsible fear-mongering about a nonexistent disease. A science-based article would be titled “Feel Bad? It Couldn’t Be Chronic Lyme Disease Because CLD Is Nonexistent Until Proven Otherwise.”

                I want you to say that it’s possible, just possible, that the CLD crowd is right, because after all, there is no evidence proving us wrong,

                It is possible that people are sick because there are invisible fairies spraying toxic fairy dust in their faces while they sleep. That is indeed possible and I assert it as true, unless you can prove otherwise. Meanwhile, I want the right to sell products and treat patients however I choose. I wish to sell detox remedies and countless drugs to kill all the bad, invisible fairies. More importantly, I must be exempt from any liability or accountability, and fully protected under the law.

                I can see the article now. “Feel Bad? It Could Be Invisible Fairies Unless Proven Otherwise”.

                It would make much more sense to say, “Feel Bad? It Can’t Be Invisible Fairies Because Invisible Fairies Are Nonexistent Until Proven Otherwise.” The manipulation makes so much more sense when you substitute “fairies” for “chronic” or stealth infections. Even so, you still need to prove that long-term antibiotics are a safe and effective treatment.

              5. WilliamLawrenceUtridge says:

                I greatly appreciate your honesty. I have heard your central point and I fundamentally disagree with it. I just don’t see how you can say that we can’t be certain when you haven’t experienced what we have. That’s just not a judgement that you can make.

                I don’t know how you can believe that merely because you suffer, that means you are correct about the etiology of your suffering.

                I want all of you to admit what you (William) just did… that in the absence of hard, scientific proof, you have chosen to believe the IDSA Lyme Committee and everyone else who follows them.

                Yes, but you seem to be consistently missing why I believe them – because I lack the time and knowledge to parse more than 1,000 scientific papers and repeatedly arrive at a conclusion based on the actual science, thus I rely instead on their expert judgement. You also seem to be missing the fact that the certainty of your beliefs are not based on hard scientific proof (if they were, then I would believe them because the ID docs would have changed their mind).

                But I want you also to acknowledge that some of the components of official Lyme dogma are incomplete, out of date, or simply opinions that are in dispute, not the set of proven facts that have been portrayed

                See, there you lose it. You call the failure to embrace your beliefs because of the absence of quality evidence “dogma”, meanwhile your own beliefs, your own certainty in the absence of compelling evidence, certainly qualifies as dogma far more than anything said by the ID committees. I’m sure there are doubts. One big one, for instance, is that chronic “Lyme” disease is in any way related to Lyme ticks.

                I want you to stop repeating the IDSA & CDC’s opinions as absolute, proven fact and therefore stop telling those who claim CLD that their illness “doesn’t exist.”

                And again, I didn’t say this. I’m pointing out that the science is unconvincing, thus your conviction regarding etiology is untenable. Your beliefs are not justified, they are your own personal dogma that your symptoms must be caused by Bb infection. I’m not saying you are wrong. I’m saying the data does not support the certainty of your convictions. I’m saying your personal beliefs have over-ridden the scientific evidence. Not the same thing as saying “you are wrong”.

                I want you to say that it’s possible, just possible, that the CLD crowd is right, because after all, there is no evidence proving us wrong, there is evidence suggesting we’re right, and you can’t possibly know what we’re going through and whether our stories are believable or not.

                It’s absolutely possible that your symptoms are caused by CLD. It’s also possible that we can travel through time, that homeopathy works, that angels exist, that there is a second Earth just on the other side of the sun and that a teapot too small to see occupies an orbit between Jupiter and Saturn. Many things are possible. But the mere possibility doesn’t mean certainty for your preferred beliefs.

                There are many “foxhole conversion” of people (including doctors) in the trenches with late stage Lyme Disease or CLD.

                Yes, and their lives would be much better if there were good science substantiating their beliefs. But there isn’t. That’s all they have – beliefs, based on theory, supposition, extrapolation and untested premises. Not facts. In your mind, obviously, this justifies central lines and long-term antibiotics. As someone without Lyme disease, without any relatives with Lyme disease and with substantial concerns over antibiotic resistance, I disagree.

      5. WilliamLawrenceUtridge says:

        Listing organizations that support the IDSA & CDC Lyme dogma doesn’t mean much to me, as I now understand that blind faith is common in the field of medicine.

        You mean trust in the process to produce expert guidelines, which do rely on genuine experts to analyze the relevant scientific publications and come up with the resulting recommendations? Yeah, that’s pretty common.

        They were clear in stating that their patients needed many months or even years of treatment, but the study was only going to give them a 2nd month (given some duration of time after the 1st month of treatment failed to resolve their symptoms).

        Normally antibiotics are effective extremely quickly. Even if they have to be taken for months to completely eliminate the infectious agent, it’s quite reasonable to look at the impact of two months and from there guess at the long-term effectiveness.

        Your view of doctors seems rather skewed, given you consistently see bad faith rather than frustration and a lack of convincing evidence.

        1. RedKat says:

          “Normally antibiotics are effective extremely quickly. Even if
          they have to be taken for months to completely eliminate the
          infectious agent, it’s quite reasonable to look at the impact of
          two months and from there guess at the long-term
          effectiveness.”

          So we should base a critically important conclusion about life saving treatment on assumptions and then “guess”?! That’s about the least scientific approach I can think of. I’m really surprised you said that.

          Sorry, but I think it’s just silly when treating physicians are saying it takes over a year to treat late stage patients, and then some researchers spend precious dollars on a study to treat patients for a month (a year or more after the first month) and then make an absolute, treatment-denying conclusion based on that. That’s just not scientific by any definition. It’s a set up to match someone’s predetermined agenda.

          A big problem with Lyme is it just doesn’t fit into neatly defined controlled studies. At least half of Lyme patients have one or more coinfections, which complicate the condition. There is a wide variety of symptoms and some species and strains are more virulent and adaptable than others. Different drugs work or don’t work in different people. Different immune systems behave differently. Then there are the wild cards like steroids, which suppress antibody development, or dormant/controlled pathogens like viruses or parasites that flare up making the patient sicker.

          By narrowing the definition for a study, you can only apply your conclusions to those that fit that definition. You can’t extrapolate it those you excluded because, by definition, they’re different. For example, the treatment for everyday Staph infections is completely insufficient for MRSA. MRSA is treated until it’s gone. Why not Lyme? We don’t have a good test to tell us when it’s truly gone, so we’ll have to go by symptoms. Stopping treatment when someone is still sick and allowing them to relapse while denying further treatment makes no sense at all.

          A big problem with the rigid dogma about Lyme today is there are just way too many assumptions. There’s also a great deal of double standards with a much higher bar set for CLD than there is for other illnesses and conditions.

          I find it very difficult to accept that health officials and researchers and insurers would say and do the things they’ve done, but they have. I probably wouldn’t believe it either if I just heard it from some random chronically ill person. That’s why I keep encouraging those who don’t believe us to actually read the studies and see all the contradictions, baseless accusations, illogical conclusions, and outright lies.

          Don’t accept the superficial statements and sound bites and circular logic at face value. As Dr. Hall says, someone could have an M.D. or Ph.D. from Harvard and write reams of nonsense. Please don’t automatically believe someone just because they have tenure at an Ivy League school or made it onto an unelected committee in a private, unaccountable organization.

          1. WilliamLawrenceUtridge says:

            So we should base a critically important conclusion about life saving treatment on assumptions and then “guess”?! That’s about the least scientific approach I can think of. I’m really surprised you said that.

            Sorry, but I think it’s just silly when treating physicians are saying it takes over a year to treat late stage patients, and then some researchers spend precious dollars on a study to treat patients for a month (a year or more after the first month) and then make an absolute, treatment-denying conclusion based on that. That’s just not scientific by any definition. It’s a set up to match someone’s predetermined agenda.

            In both these cases, I have the same response – I assume that the experts involved know what they are doing. I’m sure there is a reason to suppose that a month is an adequate period of time to see some sort of change in symptoms.

            Incidentally, how long after you started taking antibiotics did it take for your symptoms to abate? If it was less than a month – doesn’t that suggest that the treatment window studied was adequate? If it’s more than a month – how do you know you weren’t just getting better because time had passed?

            At least half of Lyme patients have one or more coinfections, which complicate the condition. There is a wide variety of symptoms and some species and strains are more virulent and adaptable than others. Different drugs work or don’t work in different people. Different immune systems behave differently. Then there are the wild cards like steroids, which suppress antibody development, or dormant/controlled pathogens like viruses or parasites that flare up making the patient sicker.

            It’s funny – these same claims can be made of nearly any infectious disease. Yet somehow, progress is made and conclusions reached.

            By narrowing the definition for a study, you can only apply your conclusions to those that fit that definition. You can’t extrapolate it those you excluded because, by definition, they’re different. For example, the treatment for everyday Staph infections is completely insufficient for MRSA. MRSA is treated until it’s gone. Why not Lyme? We don’t have a good test to tell us when it’s truly gone, so we’ll have to go by symptoms. Stopping treatment when someone is still sick and allowing them to relapse while denying further treatment makes no sense at all.

            Lyme isn’t MRSA. Do you konw what the “MR” stand for? That’s why you treat to eradication. That’s why long-term antibiotic therapty for Lyme is seen as irrational, because past a certain window you’re just breeding antibiotic resistance. Is Lyme antibiotic-resistant? In which case, giving someone antibiotics for a year just exposes them to risk without benefit.

            Stopping treatment when two groups, one given antibiotics, one given sugar pills, improve the same amount, makes sense as the former group is not getting better because of the antibiotics.

            A big problem with the rigid dogma about Lyme today is there are just way too many assumptions.

            I’m going to point out the irony of that statement.

            There’s also a great deal of double standards with a much higher bar set for CLD than there is for other illnesses and conditions.

            Um…not really. Other conditions have clearly demonstrated etiologies, sequelae, clinical courses and the like. None of that exists for CLD. All that exists are assertions and invalidated tests, some monkey studies (apparently unconvincing) and LLMDs making lots of money off of CLD patients without any research that shows their approaches are valid. It certainly doesn’t help when the recommendations made are for illogical ones like the Marshall protocol (I thought that was for sarcoidosis), vitamin C, detoxification and supplements. You know what disease uses supplements as treatment? None. Supplements are fiber.

            Please don’t automatically believe someone just because they have tenure at an Ivy League school or made it onto an unelected committee in a private, unaccountable organization.

            Please don’t automatically believe someone just because they tell you what you want to hear (after you sought them out on the internet and paid for the privielge of an interview).

            Also, I don’t believe someone because they have tenure. I believe that the two committees that independently reviewed the evidence for chronic Lyme disease and came to the same conclusions knew what they were talking about – because they are expert committees who reviewed the evidence.

            1. RedKat says:

              —-
              “Lyme isn’t MRSA. Do you konw what the “MR” stand for? That’s why you treat to eradication. That’s why long-term antibiotic therapty for Lyme is seen as irrational, because past a certain window you’re just breeding antibiotic resistance. Is Lyme antibiotic-resistant? In which case, giving someone antibiotics for a year just exposes them to risk without benefit.”
              —-
              It became resistant because it wasn’t previously treated to eradication. And yes, of course it needs to be treated to eradication. As Lyme does, too.

              From everything I’ve read, it is taking too little antibiotics that leaves the drug resistant bugs behind to proliferate and spread. If 2 weeks of abx always kill all the bugs, how can 3 weeks make the dead bugs drug resistant? This makes no sense at all.

              It’s one thing to think that further antibiotics aren’t necessary because the bugs are gone, but it’s false and irrelevant to say that further antibiotics create drug resistant bugs for the rest of us.

              It’s not the people taking antibiotics for a year who are spreading drug resistant bugs, it’s the people who don’t take enough to eradicate their infection. Again, please read up on TB. In the case of Lyme, it’s not contagious, so only the person who was undertreated suffers from the remaining drug resistant bugs. Were Lyme contagious, it would be an entirely different priority for our health officials.
              —-
              “Stopping treatment when two groups, one given antibiotics, one given sugar pills, improve the same amount, makes sense as the former group is not getting better because of the antibiotics.”
              —-
              My whole point is that those two groups DID NOT improve the same amount!! Read the studies!! Don’t just believe the propaganda. A significant percentage of people on the actual meds correctly guessed they were on the actual meds because they felt noticeable improvements in fatigue and some other symptoms. This is indicative of the patients feeling improvement from the drugs. After the drugs were stopped, patients reverted. This is consistent with persistent infection, but the researchers (who had already decided that there was no chronic Lyme), explained it away calling it a placebo effect. They’re confusing cause and effect.

              It’s like a report over 50 years ago that claimed African Americans showed lower scores on IQ tests than whites, and concluded they must be less intelligent. But to an unbiased eye, the data showed the low IQ links was not to race but to poverty, and that in multiple parts of the country poor Caucasians tested even lower than poor African Americans. Biased researchers (disgustingly so, in this example) are known to draw conclusions that are inappropriate given the data. They sometimes use as much “spin” as politicians do.

              If you read the summary of these studies (not just the abstract), you’ll see that the two groups were not the same, and the treated group showed statistically significant reports of improvement in fatigue. If you only got 1/12 to 1/24th of the treatment you need, how big of an improvement should you expect? This was a worthless study.

              1. weing says:

                “It’s one thing to think that further antibiotics aren’t necessary because the bugs are gone, but it’s false and irrelevant to say that further antibiotics create drug resistant bugs for the rest of us.”

                Your body consists of about 10 times as many bacteria as you own cells. When you take antibiotics, the bacteria that are more resistant to the antibiotics are selected for and you are colonized with them. They can share their resistance to the antibiotics with other bacteria, creating drug resistant pathogens.

              2. WilliamLawrenceUtridge says:

                My whole point is that those two groups DID NOT improve the same amount!!

                Yeah, that’s true. The group on antibiotics (who would experience the side effects of antibiotics – that’s why it’s important to have a question “did you think you were on the active or placebo arm” at the end of studies) had slightly less fatigue. Your claim that patients guessed they were on abx because they had less fatigue doesn’t register the fact that they may have had less fatigue because they guessed they were on the antibiotics. And having slightly less fatigue is a questionable finding. Fatigue is labile and subjective. So yes, there is a confusion about the placebo effect.

    2. Lauren Hale says:

      Thank you Dr. Hall for responding.

      Willy Burgdorfer, the true discoverer, believes in chronic borreliosis. Borrelia by definition is a relapsing organism. It should be implied by its’ name.

      The issue isn’t about antibiotics. It is about the innate immune response failure when the infection is activated.

      If scientists are well-aware of these original publications, what IS the reasoning behind it for the suppression? Shouldn’t this be a huge deal? I have wondered that… All I can come up with is money. Protecting Investments. Patents. Vaccines. The keys to the kingdom.

      You should know there is no money in cures. Just treating symptoms. But if millions are infected, people will be clamoring for a cure soon enough. I assume that is why the FDA had the foresight to give the go-ahead to VG Life Sciences. And DARPA just funded ModeRNA Therapeutics to make injections or infusions to treat a variety of infectious diseases. Guess what is included.

      You cannot vaccinate against something like borrelia, just like HIV. Vaccine failure has happened in both. They are immunosuppressing conditions, like Valley fever/funguses. Borrelia has been found in b-cell lymphomas.

      I don’t view what ILADS has to say as “divine law”. I am an individual with my own thoughts. Where would they get funneling for clinical studies? What resources? What equipment? NIH? Since there has been little concern over this, funding just isn’t there.

      I ask NIAID in an email what studies they are conducting on “CLD” and you know what they said? They are about to conduct a 28-day study with Ceftriaxone. Hasn’t that been done before with the predictable outcome? What a waste of tax money. No new ideas.

      Foreign scientists are our only hope.

      They also told me they have been studying borrelia for “decades and they still don’t know how it works”. Wow, is all I have to say to that.

      I think any science-appreciating mind would say “I don’t know why you’re sick” is unacceptable in this day and age.

      1. Harriet Hall says:

        “You should know there is no money in cures.” I know no such thing.

        “If scientists are well-aware of these original publications, what IS the reasoning behind it for the suppression”
        No evidence has been “suppressed.” The entire body of published evidence has been examined and found wanting. If you don’t understand their reasoning, you don’t have the right to criticize them and substitute your lack of knowledge with the only thing your imagination can come up with.

        1. Lauren Hale says:

          You aren’t being specific. What is their reasoning?

          1. Harriet Hall says:

            Their reasoning? That the entire body of published evidence is insufficient to establish the existence of chronic Lyme or the response of its alleged victims to antibiotics and to all the other proposed treatments and is more consistent with other explanations. To understand their reasoning, you would have to understand more than I could possibly explain in a comment. One of the articles I cited http://www.nejm.org/doi/pdf/10.1056/NEJMra072023 is the best one source explanation.

            1. Lauren Hale says:

              The question really is, why are so many people turning up with the 1986 through 1990-defined type of “Lyme”? It means they actually got it right in the beginning.

              Immune dysregulation downplayed.

              The definition has been flawed to begin with. Because all borrelia is relapsing. Duped.

              That is the medical fraud.

      2. Sastra says:

        You should know there is no money in cures. Just treating symptoms.

        What? Sorry, no — this doesn’t even make intuitive sense. “No money in cures?
        Not just money, I think, but status, fame, and the satisfaction of having found a cure which helps millions of people. You seem to be in danger of turning the medical professionals who disagree with you into idiots or cartoon villains. Be cautious there.

        I think any science-appreciating mind would say “I don’t know why you’re sick” is unacceptable in this day and age.

        I think science-appreciating minds recognize that science is not magic even in this day and age, we don’t know everything, and when we don’t know something the only acceptable position is to be honest and say so.

        1. Lauren Hale says:

          Which of the big money-maker illnesses have been “cured” in the last two or three decades?

          Who is funding all these studies to find “cures”?

          There is no integrity or prestige. It’s about cash and pharmaceuticals. Not passion. At least no passion in Lymeland.

          Basically everything has to be scrapped and restarted.

          1. WilliamLawrenceUtridge says:

            Well, there’s a bunch of types of cancers. Ulcers. Macular degeneration. HIV isn’t cured, but it is generally controlled. Erectile dysfunction, not quite “cured” but definitely addressed.

            If you think that a cure for cancer wouldn’t be a money-maker, you’re a bit of an idiot. Most cancers aren’t “lifetime-managed” conditions, they are curative (or death).

            Incidentally, do you think LLMDs have integrity? Do they treat you with pharmaceuticals? Do they take cash? Do they have passion? Who funds the studies to prove they cure their patients?

            The last is a trick question, because LLMDs don’t conduct studies. They do get charged with things like wire fraud, health care fraud, tax fraud, manslaughter, money laundering and treating patients without examining them. Truly are they paragons of virtue.

            1. Dave says:

              Don’t forget to mention that discovering a cure for a significant disease would likely result in the most coveted award for a research scientist, the Nobel Prize.

              1. WilliamLawrenceUtridge says:

                They wouldn’t just be discovering a new disease, in this case they would almost certainly be discovering a whole new biochemical pathway. Not just a new bacteria – a new way of understanding human biology. Quite a feather in anyone’s cap.

              2. Self Skeptic says:

                Note to newbies: I’m a scientist, and not a CAM supporter.

                I’m getting up to speed on this. Lyme disease is a great poster child for my interest in exposing bad science in the mainstream. ;)

                It looks to me as if Allen Steere has had his eye on the Nobel since he started setting things up for the vaccine Lymerix, in the early 1990s. He has been credited with discovering and publicizing the disease in 1975. If he had succeeded in putting a successful vaccine on the market for it in 1998, it would have made him a contender. But the vaccine didn’t work very well, and probably had serious side effects (both of which points are denied by the people who promoted it, including the FDA, but I don’t find them trustworthy any longer, on this subject.). Now a new vaccine is being premarketed, starting in Europe, still based on the same mechanism of innoculating with OspA, with a few tweaks to make it cover more species and strains of Bb. It’s being overseen and promoted by Ben Luft at Stony Brook, who isn’t a core member of the academic clique that has been dominating the field, which may make some LD patient advocates less suspicious of it. You can find premarketing information about it (disguised as medical literature) through google or PubMed. I suspect that Steere’s hopes will be supported if this new vaccine becomes popular; he claims the first one only failed because of crazy activists, and the medical establishment mostly believes him. He has excellent PR skills, and isn’t embarrassed about using them. (His father was a lobbyist for an insurance company.)

                I get the impression that most of those on the SBM side of this issue (i.e., believers that the experts are always right) haven’t even read Polly Murray’s “The Widening Circle”, Jonathan Edlow’s “Bull’s-Eye”, or Pamela Weintraub’s “Cure Unknown.” I guess it’s a lot faster to write off he top of your head, than to read books, but aren’t you even a little embarrassed, not to have investigated the details behind the patients’ complaints? Especially after having read Goldberg’s “Bad Pharma?”

              3. weing says:

                “I get the impression that most of those on the SBM side of this issue (i.e., believers that the experts are always right) haven’t even read Polly Murray’s “The Widening Circle”, Jonathan Edlow’s “Bull’s-Eye”, or Pamela Weintraub’s “Cure Unknown.””

                The SBM side is believing that the experts are always right? That sounds like a straw man and no, I haven’t read those books. Did read “Bad Pharma” though.

                “I guess it’s a lot faster to write off he top of your head, than to read books, but aren’t you even a little embarrassed, not to have investigated the details behind the patients’ complaints?”

                I am a clinician, not a scientist. What do you think I do all day, if not investigate the details behind patients’ complaints?

                Regarding the vaccine, I haven’t been able to get a straight answer. I will continue to wait.

              4. WilliamLawrenceUtridge says:

                Definitely not the belief that “the experts are always right”, but definitely the belief that “before anyone can claim to be right, they need solid, convincing evidence”.

                And the belief that in general, with that evidence, genuine experts will be willing to change their mind.

                It’s really about proponents of CLD not meeting the burden of proof sufficient to convince infectious disease experts, and that being enough for me to be convinced more work needs to be done.

              5. Self Skeptic says:

                Weing,

                As a scientist, I’m not very concerned about what individual clinicians and patients are doing. I assume that most of them, like you, are conscientiously doing what they’re told, by the experts. When I refer to the patients who are not being heeded, I mean the ones who are protesting against the current “standard of care” for Lyme disease (which is codified in the IDSA’s guidelines), because it resulted in delayed diagnosis and inadequate treatment.

                If you read any of the books I’ve recommended (Murray, Edlow, or Weintraub) you can get a sense of what the issues are. If you read Weintraub’s “Cure Unknown”, you can verify the errors in the individual papers, because it is thoroughly referenced. It explains in non-technical terms, what it is about the science, that outrages the patients, when they find out about it. It has to do with common-sense things like circular reasoning, cherry-picking study participants, black-and-white thinking, WYSIATI, etc. I think there’s resistance to reading Weintraub because she’s a journalist, a patient, and a mother of patients. In my view, those are about the best credentials one could have, to write this story. But the bottom line, is the quality of the book itself, and I think it is excellent.

              6. Self Skeptic says:

                WLU,
                Read the books I’ve cited, above. Take notes, and follow up on the parts you don’t understand. You’ll be swimming in evidence. It’s very interesting, more interesting that polemics, to my taste.

                I think if you’re going to continue to dominate all the conversations at this site, you should educate yourself.

                If you haven’t yet learned to read the medical and scientific literature, I recommend Trish Greenhalgh’s book “How to Read a Paper.”

                Then read what the people who are trying to reform medicine are saying about its current problems, read some of the disputed papers in a controversial field, and read the criticisms that are being made about them. Learn to see for yourself what is behind the criticisms.

                Read some clinical practice guidelines, look at how the evidence is graded, and read both sides discussing some of the disputed recommendations.

                At that point, you’ll have something of substance to say. Up to now, you’ve just been repeating the SBM blogger’s idealized representation of medicine and medical research. We all know how it’s supposed to work. Now it’s time to get real.

              7. vadaisy says:

                At that point, you’ll have something of substance to say. Up to now, you’ve just been repeating the SBM blogger’s idealized representation of medicine and medical research. We all know how it’s supposed to work. Now it’s time to get real.

                How cute. You don’t like it when people stand up against quackery and patient abuse. No one has answered the question as to how energy medicine works. Why not? You just keep repeating yourself without answering the question. Where’s the research on energy medicine and NAET? If you want people to take you seriously, answer the questions and provide the evidence to support the treatments in the article. That’s how it’s supposed to work. Get busy.

              8. weing says:

                “When I refer to the patients who are not being heeded, I mean the ones who are protesting against the current “standard of care” for Lyme disease (which is codified in the IDSA’s guidelines), because it resulted in delayed diagnosis and inadequate treatment.”

                You are assuming that their symptoms really are due to Lyme. What if they are not? You are also assuming that the standard of care resulted in delayed diagnosis and inadequate treatment. I need proof of that. The books you mention are not case reports, or records of a patient that I can verify for myself.

              9. weing says:

                “As a scientist, I’m not very concerned about what individual clinicians and patients are doing.”

                BTW, what are you concerned about? Medicine is science-based. It is not a simple science like physics. I don’t think I would call medicine a science. There is science in medicine. The more science we have, the better medicine will get.

              10. Self Skeptic says:

                Vadaisy,

                Wrong thread. This is the Lyme disease thread.

                You also seem to have me confused with someone else.

                I’m a scientist who thinks academic medicine is too lax about patrolling itself for sloppy science, and too gullible about believing that “expert consensus” as expressed in textbooks and guidelines, is based on actual science. Sometimes it is, and often it isn’t.

                It’s too bad there’s no good way to search the site and get a particular person’s comments listed, to do a quick check on who’s who. In the absense of such a feature, I guess we’ll occasionally make these mistakes.

              11. Self Skeptic says:

                Note: It looks as if this may appear in the wrong place. This is comment #11 in the sub-thread. Please read #1-10 first, to see it in context.

                Weing said:

                “You are assuming that their symptoms really are due to Lyme. What if they are not? You are also assuming that the standard of care resulted in delayed diagnosis and inadequate treatment. I need proof of that. The books you mention are not case reports, or records of a patient that I can verify for myself.”

                I’m not assuming anything, except that “expert consensus” in medicine is often not based on good science, even when it pretends to be. That means we should reserve judgment, until we’ve checked whether complaints about the quality of the science being cited in support of the mainstream view, are justified, or not. I didn’t join this discussion until I’d done the background research necessary, to have an informed opinion.

                Maybe you should go to your public library and get the books, and see what’s in them, before assuming they are irrelevant, or untrustworthy, or unscientific. I’m only recommending books that are scientifically sound. The reason one has to turn to books, is that it is too long a story to be treated in adequate detail, in an article.

                I included Polly Murray’s “The Widening Circle”, because she is one of the true discovers of Lyme disease. She and Judith Mensch, another resident of Lyme, CT, noticed the strange clusters of juvenile arthritis in their communities and hassled public health officials until they did something. Of course, the Yale physicians who eventually published, got the credit for the discovery, but Murray is the one who actually noticed the epidemic, documented the cases, and called on the appropriate agencies to investigate. If you look at her book, you can see her excellent journal records of her own case of LD, and how it unfolded. I find her a highly credible witness of what went on in Connecticut at that time.

                If you dismiss her just because she isn’t a doctor, you’re missing the point. None of the academic doctors in the area noticed the disease, at all. Only family physician Scrimenti in Wisconsin, and clinicians Mast and Burrows at the Navy base in New London, Connecticut, even remarked on the EM rashes that were appearing, and connected them with the European rashes that had been previously described and treated with penicillin.

                I include Jonathan Edlow’s “Bull’s-Eye” because he is a professor at Harvard Med, and the book is published by Yale Press, so that those who need the reassurance of prestigious academic credentials, can get the background on the controversy that way. It’s a good book, overall. He misses one of the main points, in my view, which is how much damage is done to patients by the faulty 2-tier test. After he describes how the 2-tier test was established as the standard (for surveillance only, originally), by political maneuvering, behind closed doors, he says that doesn’t mean the test should be abolished. I disagree; when a status-quo test is held up as a gold standard, with which all future tests must agree (as the FDA is now doing), the revelation that the science behind the test is seriously distorted, is a big deal.

                Finally, Weintraub’s “Cure Unknown” is where the details of the science can be found. “Bull’s-eye” is not very well-referenced.

                I’m not asking you to read and believe. I’m suggesting that this is an easy way to collect the references one needs, to follow how the disease model became unacceptably distorted.

                Collect the foundation references of the field, and look at them yourself to see if the errors (not trivial errors, but errors that are fatal to the mainstream disease model) are really there. They are; I checked. You all should check too, or else reserve judgment.

                If that’s too time-consuming, or too boring, for the SBM regulars to do, then how can they claim they care about evidence?

              12. Self Skeptic says:

                Note: This is comment #12 in the subthread.

                Weing said, “BTW, what are you concerned about?” and “The more science we have, the better medicine will get.”

                If you don’t know yet what I’m concerned about, you’re not actually reading my posts. That’s your choice; but then, why answer them?

                However, I’ll say it again, more bluntly. I’m a scientist, who is concerned that there is a lot of fake science passing as real, in the medical literature. This leads to trouble, when reality doesn’t match the models that are promoted in medical textbooks and guidelines. We don’t just need more science, we need better science.. As you cogently pointed out in a previous thread, there is already so much, that it would take 29 hours a day to stay up to date, at an average of 5 minutes per paper, which isn’t long enough to check whether the conclusions in the abstract are justified by the data.

                What is needed in academic medicine is better science, not more fake science.

                Weing said, “Medicine is science-based. It is not a simple science like physics. I don’t think I would call medicine a science. There is science in medicine.”

                I agree with you. And I think it’s perceptive of you to make that distinction. Because medicine isn’t a bench science in which one can plan experiments with well-controlled variables, it’s not really amenable to the hard-science approach. With patients, you have to make a judgment call, and do something (even if it’s recommending wait-and-see), right now. There’s no time to investigate thoroughly and scientifically.

                That’s not anyone’s fault (though excessive haste, required by the current medical business model, makes the problem worse); it’s the nature of the task. Practice guidelines make decisions faster, but when they’re wrong, masses of people suffer the consequences. If doctors ignore or fight them, when they try to call attention to a systemic problem, the damage can go on for decades.

              13. weing says:

                “I’m a scientist who thinks academic medicine is too lax about patrolling itself for sloppy science,”

                So you are pushing for more rigor in accepting data and studies? Nothing beats patient testimony and self-diagnosis for rigor.

                “and too gullible about believing that “expert consensus” as expressed in textbooks and guidelines, is based on actual science.”

                Are you sure it isn’t based on the best information they have at the time? We should be skeptical of the consensus of experts but not of the consensus of non-experts, like patients? Sound about right?

              14. vadaisy says:

                I’m a scientist, who is concerned that there is a lot of fake science passing as real, in the medical literature.

                Yes, indeed there is a lot of fake science. Why add more to it? Instead of closing the gates and ensuring the care out there is the best available, the flood gates are opening to allow every quack and con to enter the field. The “Lyme-literate” field is their breeding ground. Spreading doubt on mainstream views while discretely leading patients towards “LLMDs” is not the mark of a true scientist, but rather an activist. (PDF)

              15. WilliamLawrenceUtridge says:

                What do infectious disease experts say about Polly Murray’s “The Widening Circle”, Jonathan Edlow’s “Bull’s-Eye”, or Pamela Weintraub’s “Cure Unknown”? I can never become sufficiently expert in the literature to say whether the points in the books are accurate, misleading, or missing some minor point that invalidates the analysis. And many advocates tend to present highly one-sided, uncritical reviews of issues, because they do not have a scientific community to keep them honest. Why haven’t the patient groups and related bodies taken the criticisms made in the books and drafted a new set of research protocols about Lyme disease to test their hypotheses?

                Again, I must trust the experts, I’m never going to read the original papers. I simply don’t know enough, and don’t care enough to become sufficiently educated. Why bother learning about something I have little interest in when there’s a pre-built expert community looking into it?

              16. WilliamLawrenceUtridge says:

                If that’s too time-consuming, or too boring, for the SBM regulars to do, then how can they claim they care about evidence?

                That’s a pretty obvious way of putting the burden of proof on us, a bunch of random commentors on a blog, rather than say, the people making the claims who should be advocating for better science rather than claiming their own personal testimony and experience is sufficient to design a treatment protocol.

              17. weing says:

                “I’m not assuming anything, except that “expert consensus” in medicine is often not based on good science, even when it pretends to be.”

                That is your assumption? Not a conclusion based on a thorough review of the evidence? Interesting. What part of that is science? Do you have sufficient background in the various disciplines to be able to make a judgement? Or do you just assume, since you are a scientist, that you have the necessary background by default.

                I agree, there is an element of trust placed in expert consensus. I trust that they are honest and doing the best with the information they have. Of course they are human beings and are capable of fraud or sloppy science. That happens with every scientific discipline also. Sooner or later, it comes out. We have a big problem with pharmaceutical research. It is difficult to know how much of it is real, how much is not because of the file-drawer effect. Personally, I don’t care how many degrees someone has. If their studies don’t make sense, their research can’t be replicated, it’s bullshit.

              18. Self Skeptic says:

                Note: this is #18 of the subthread.

                @Weing,
                A little heavy on the sarcasm, perhaps?
                It’s hard to know what to say to you. I offer you specific sources to help understand what the controversy is about, from the protesting patient’s point of view. You live and practice in Connecticut; one would expect some degree of interest, in what led to the controversy, and why normally docile patients disbelieve the experts in this case. But you get angry, and tell me that you don’t care what patients, or even an open-minded Harvard MD and academician, have to say.

                That makes no sense. The patients have direct experience of the disease we are discussing, in their bodies and in their families. These particular patients are observant and intelligent people.

                They are offering highly relevant information. If you think it’s irrelevant, or might somehow contaminate you, you are living in a world where “evidence” has a completely different meaning, than it does in science. If this is viewpoint is common in places other than SBM, that would indicate a problem in medicine even bigger than pharma’s fake science.

              19. weing says:

                “The patients have direct experience of the disease we are discussing, in their bodies and in their families. These particular patients are observant and intelligent people.”

                Of course. They are the experts of the symptoms of their disease. Do you understand the difference between symptoms and signs? When I evaluate a patient, I automatically ignore the diagnoses of other physicians or self-diagnoses to avoid falling into the confirmation bias trap. Sorry if you find that offensive or misinterpret it as anger.

            2. RedKat says: