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Lemons and Lyme: Bogus tests and dangerous treatments of the Lyme-literati

Tick

It’s that time of year when every day I can expect to see at least one patient with a concern about Lyme disease. In Lyme-endemic regions such as Western Massachusetts, where I practice pediatrics, summer brings a steady stream of children to my office with either the classic Lyme rash (erythema chronicum migrans, or ECM), an embedded tick, a history of a tick bite, or non-specific signs or symptoms that may or may not be due to Lyme disease. Sometimes the diagnosis is relatively straightforward. A child is brought in after a parent has pulled off an engorged deer tick, and there is a classic, enlarging ECM rash at the site of the bite. More often the presentation is less clear, requiring detective work and science-based reasoning to make an informed decision and a diagnostic and therapeutic plan based on the best available evidence. Depending on the story, the plan may include immediate treatment without any testing (as in the straightforward case described above), immediate testing without treatment pending test results, or waiting as we watch and see how a rash progresses before doing anything. An example of this latter course of action would be when a patient comes in with a pink swelling at the site of a new tick bite. In this case, it may not be clear if the swelling is a Lyme rash or simply a local reaction to the bite, a much more common occurrence. The classic ECM rash (an enlarging, red, circular, bull’s-eye rash at or near a tick bite) typically develops 1-2 weeks after a tick bite, but can occur anywhere from 3-30 days later. It then expands and darkens over another 1-3 weeks before fading. This classic rash is not the most common rash of Lyme disease, however, as it occurs in only about 30% of cases. Instead, the rash may be uniformly pink or red (or even darker in the center) without the target-like appearance, or may be a linear rash, expanding outward from the tick bite site. In the case of a patient who comes in with a vague, pink swelling within a day few days of a tick bite, we will typically wait and see what happens to the rash. If it is a local reaction, it will likely resolve within another few days. With Lyme disease, the rash will continue to enlarge and declare itself as an ECM rash. Another unclear and not uncommon situation is when a patient comes in with non-specific symptoms such as fatigue, musculoskeletal pains, and headache. If warranted by the history and the physical exam, we may in this case order Lyme testing. This may not give us an answer even if the patient has Lyme disease, because results are often negative in the first few weeks of the disease. In this case, if symptoms persist or evolve, we will repeat the testing in another few weeks at which point true Lyme disease will test positive and can then be treated. The good news is that the treatment of Lyme disease, particularly in the early, localized phase of the disease, is extremely safe and effective with a 14-day course of antibiotics. The testing is also relatively straightforward, with very good sensitivity and specificity when performed correctly. And this is where the bad news comes…

Lyme-literate doctors

Though providers who choose to practice a science-based approach to caring for their patients stick to the CDC-recommended testing protocol, created using the best evidence, there are many so-called “Lyme literate” providers who stray from the evidence-based path to offer up a potpourri of unapproved, non-recommended, and expensive tests to their patients. The purpose of these tests is without a doubt to detect cases of Lyme disease that other, presumably Lyme-illiterate providers missed due to their “close-mindedness” to these superior tests. Before we discuss these maverick, enlightened providers further, let’s review the tests that are currently recommended by the CDC and the best available evidence.

The CDC has set forth a relatively simple protocol for the use of laboratory testing to confirm a suspected case of Lyme disease. The current, science-based consensus on laboratory diagnostic testing for Lyme disease comes from the Second National Conference on Serologic Diagnosis of Lyme Disease, which convened in 1994. Based on the best available evidence, the Conference recommended a two-step testing protocol using a single blood sample.

TwoTieredTesting

Step I: ELISA
In step I, an enzyme-linked immunosorbent assay (ELISA) is used to detect antibodies to a wide assortment of antigens from B. burgdorfori, the Lyme organism. If this test is negative, it is likely that either the patient does not have Lyme disease, or that the test was performed too early in the course of the illness (the first 3-4 weeks). In this case, the test should be repeated in a few weeks, assuming the diagnosis is still being considered due to persistent signs or symptoms. If, on the other hand, the result of step I is positive or equivocal, a more definitive and specific test is performed.

Step II: Western Blot
If Step I is positive or equivocal, we move to step II, the Western blot (WB) test. This looks for antibodies to specific Lyme proteins that have been separated based on their molecular weights. These separated proteins are then exposed to the patient’s blood sample. If the patient has antibodies to these proteins, they bind to them and are visible as bands on the WB. A specific pattern of positive bands of sufficient intensity are required to be present for the WB to be interpreted as positive.

When performed correctly, this test is considered highly specific for Lyme disease. When well-trained individuals at certified labs perform the correct FDA-approved tests in appropriate circumstances, and when providers interpret the results correctly, Lyme disease testing can be a reliable way to confirm or rule out the disease with a high degree of validity. Unfortunately, this does not always occur.

Confirmation bias and the Lyme-literati

Individuals who believe they have Lyme disease that was missed by their own providers will sometimes seek out so-called “Lyme-literate” providers; I’ll call them Lymlits. Often these individuals believe they are suffering from chronic Lyme disease (a non-entity discussed elsewhere), and are hoping to confirm this diagnosis. Lymlits provide the confirmation bias these patients are looking for. They quickly empathize with these patients and offer what they claim to be a more informed approach to their diagnosis and treatment. Like all alternative medicine providers (and make no mistake, that is exactly what we are talking about here), they are quick to cast the patient’s more conventional provider as shackled by convention, or to Big Government or Big Pharma. Often they claim a more holistic approach as well, infusing other sCAM modalities or spiritualism into the mix. Again, like many sCAM providers, they claim special knowledge and insights not available to or ignored by conventional providers. To the sCAM-credulous, the Lymlits represent an open, understanding ear and long-sought answers to their problems.

The websites of Lymlit providers clearly pander to the fears, anxieties, and preconceptions of their clients. Often they contain entire sections devoted to the “problem” of undiagnosed (but not over-diagnosed) Lyme disease, and how the Lymlits can help uncover the diagnosis and provide the correct (often dangerously incorrect) treatment. The patients I see at my practice who have bought into a wide variety of woo diagnoses and treatments have often been seen by providers of the Northampton Wellness Center, and the over-diagnosis and treatment of Lyme disease is no exception. Their services are so typical of this this kind of practice that I will use them as an example. A quick perusal of their website’s Lyme disease section should be of concern to anyone who cares about the practice of EBM and SBM. Like many sCAM practitioners, this group does not serve as primary care providers but rather as “consultants”. This is a misnomer, however, as they are rarely consulted by science-based providers. Rather, patients typically self-refer. Using a “holistic” approach, they claim the ability to help patients with chronic illness who have not been helped by their conventional providers. What they offer is reassurance that they have come to the right place, that they will get the answers they are looking for, and receive treatments not available through most providers. Ironically, their diagnostic tests and treatment modalities are usually described with terms borrowed from true science, and are often claimed to be evidence-based as well. The Northampton Wellness Center’s website seems to do everything possible to reaffirm people’s fears about their chronic or undiagnosed Lyme disease. It explains why the organism is so tricky to diagnose and treat (it really isn’t), and how they can do so safely, effectively, and often “naturally” and “holistically”. They hype the existence and importance of biofilms, co-infections, weakened immune systems, and heavy metals in the pathogenesis of Lyme disease, and explain how they can help diagnose and fix these problems. And unsurprisingly, the Northampton Wellness Center website has the clear red-flag seen on many other sCAM practice websites – the ubiquitous web store. These stores typically hawk all manner of supplements, potions, and snake oils to treat your every ailment. I couldn’t access the Northampton Wellness Center’s web store without being a patient, so I don’t know exactly what they offer the chronic Lyme sufferer. Perhaps most alarmingly, Lymlits like those at the Northampton Wellness Center hype unapproved and non-recommended laboratory tests for diagnosing Lyme disease in their patients. One example is an extended, purportedly-superior Western blot assay. According to their website:

Unfortunately, most laboratories leave out the most specific bands, 31 and 34, on their Western Blot assays. If we use a special laboratory and get a positive band 31 result, we can confirm that this is truly related to the Lyme organism by doing a “31 kDa epitope” test, to make sure it is not positive from a cross-reaction, which could occur from having a chronic viral infection.

Without getting too deep into the weeds here, the Internet is rife with conspiracy theories about why the CDC would fail to include the 31 kDa band in the group of bands required to be present for a positive Western blot interpretation. At the heart of the conspiracy is the belief that this band, which represents OspA, the outer surface protein of B. burgdorferi, was left out because OspA was the main component of a Lyme vaccine (Lymrix) which is no longer available but was given to nearly 2 million people before it was taken off the market. The allegation is that the band was not included because people who had received Lymerix would likely test falsely positive. Given the limited number of individuals vaccinated with Lymerix, this seems an unlikely explanation. Another allegation is that the CDC and FDA do not want people to be diagnosed with Lyme disease as a result of a conspiracy involving the insurance industry. However, as explained by Halperin et al. in the book Lyme disease: an evidence-based approach, the explanation is much more mundane (and rational) than this:

the bands selected for use in the Western blot were chosen not because they are unique to B. burgdorferi but rather on the basis of statistical considerations that included an analysis of those combinations of bands that provided the best predictive values for well-characterized specimens known to have been obtained from individuals with and without Lyme disease

In other words, though OspA is a relatively specific marker for infection with B. burgdorfori, in the assessment of actual patients it was not found to be among the group of bands which best distinguished Lyme disease patients from controls.

Wblot

They go on to add that that:

laboratories using criteria other than these must establish the validity of their own criteria based on equally rigorous scientific assessments.

Scientists are actively working on better, more sensitive and specific diagnostic tests for Lyme disease. But it will take reproducible and validated results to move these tests forward. Not the direct marketing of unsupported tests to Lymlits by specialty labs. Other examples of unapproved and non-recommended tests discussed on the Northampton Wellness Center website and recommended by many Lymlits include dot-blot testing, PCR, and T-lymphocyte response assays. The CDC clearly states that none of these tests are sufficiently reliable for diagnosing Lyme disease. In 2005, the CDC became so concerned about the proliferation of non-validated and potentially dangerous tests for Lyme disease, that it issued an alert in its Morbidity and Mortality Weekly Report (MMWR). In April of this year, the CDC issued yet another warning about a new laboratory-developed culture method that has been made available commercially. Again, the CDC has warned that the results of these types of “home-brewed” tests should not be relied upon. According to the warning:

Published methods and results for this laboratory-developed test have been reviewed by CDC. The review raised serious concerns about false-positive results caused by laboratory contamination and the potential for misdiagnosis.

The CDC’s warnings are justified. While Lymlits claim these specialized tests are better able to detect Lyme disease than those used by conventional practices, what they do, in fact, is produce a predictable increase in false-positive results. Thus, by pretending to have superior testing options than those provided by the patient’s primary care provider, Lymlits provide patients with the elusive Lyme disease diagnosis they are searching for, and then offer unnecessary treatments for a non-existent infection. Ignoring the science-based treatment recommendations of the Infectious Disease Society of America (IDSA), Lymlits often recommend dangerously long, sometimes intravenous courses of antibiotics, in addition to myriad other potentially dangerous sCAM modalities for the treatment of these questionable infections. Additionally, the misdiagnosis of Lyme disease in these individuals potentially delays the diagnosis of other, real conditions, which then go untreated.

Ironically, Lyme advocates and Lyme-conspiracy proponents were at the forefront of the manufactroversy surrounding the demise of Lymerix, the first FDA-approved Lyme vaccine. Although Lymerix, whose main component was the OspA protein, was not the most effective vaccine (with an efficacy rate <80%), it was still a cost-effective preventative strategy for people at risk in endemic areas. Unfortunately a slew of adverse events reported soon after the vaccine was licensed, combined with an irresponsible (but predictable) media storm, put a chill on the use of the vaccine, eventually leading to its economic failure and being pulled from the market. Pre- and post-marketing studies involving large numbers of patients failed to link any significant adverse events to Lymerix beyond the usual injection site redness and swelling and occasionally fever seen with other vaccines. There was some evidence that a small subset of people with the HLA-DRB1*0401 genotype might be at risk for developing an autoimmune reactive arthritis in response to the vaccine, though the data was inconclusive and did not prove causality. Still these concerns, combined with the spreading fear of unsupported adverse events and the ensuing media frenzy was enough to put an end to the vaccine, a vaccine that could have led to the prevention of many cases of Lyme disease.

Conclusion

Lymlit doctors claim they are providing their patients with a service that most others are either unwilling or lacking the knowledge to provide. They balk at the argument that these tests are not supported by sufficient evidence of validity, citing junk science, data from the proprietary labs themselves, or anecdote to support their position. These arguments are often shrouded in conspiracy theory, invoking closed-door sessions in which physicians and scientists do the bidding of Big Pharma or the insurance industry. So-called Lyme advocacy organizations have evolved to support individuals who believe they have chronic Lyme disease or Lyme disease undiagnosed by their doctors. While research is underway to develop even more sensitive and specific tests for diagnosing Lyme disease, the current strategy recommended by the CDC is the best we have to date. Unfortunately, as long as there are providers willing to pander to conspiracy theorists and to patients looking to confirm their fears, people will continue to be needlessly treated, and our societal approach to science will move further back in time.

Posted in: Diagnostic tests & procedures, Science and Medicine

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244 thoughts on “Lemons and Lyme: Bogus tests and dangerous treatments of the Lyme-literati

  1. Mike H. says:

    The sensitivity and specificity is fairly accurate when you are talking about Borrelia burdorferi sensu stricto.

    When you start talking about other borrelia (some were in the relapsing fever variety and reclassified as Lyme disease), tests may be seronegative depending on the strain.

    It’s not so cut and dry. And when it comes to treating the seronegative strains or other borrelia strains that may not be classified as Lyme but have similiar presentation. These can be found on the west coast and Europe and may not show positive because of the genetic heterogeneity and antigenic variability. And it’s quite likely that there are more undiscovered strains worldwide that have enough genetic heterogeneity to evade detection with traditional methods.

    A less specific and one that addresses a wider range or borrelia is needed to address these issues. And then, if needed, you can try narrow down the strain with more specific testing – though technologies such as PCR can be problematic.

    Lyme disease is probably both over and underdiagnosed. Underdiagnosed by your typical primary care physician and overdiagnosed by integrative doctors and naturopaths.

    However, while these patients may not have Lyme disease, that isn’t to say they are sick or faking it. In fact, the immune abnormalities of those who are labeled as chronic Lyme disease often looks very similar or identical to those of CFS. Of course, the cause or causes of CFS are elusive, but may involve a chronic or hit and run infection of several varieties (virus, bacteria, protozoa).

    Now some are treated that may have other disorders such as depression, MS, ALS, Lupus, and other diseases.

    So my point is, we need to keep in mind that patients that may or may not have Lyme disease may be very sick! And since CFS and Lyme disease can have similar clinical presentations, it can sometimes be hard to differentiate. A way to differentiate that lacks studies is that CFS patients will often have a low sed rate. Yes, low as in 0-3. However, other inflammatory markers such as C-Reactive Protein may or may not be elevated when you see that 0-3 sed rate. However, disseminated intravascular coagulation (DIC) (which can be caused by infection) can cause an abnormally low sed rate too, so this doesn’t rule out Lyme necessarily. Adding complication to the issue, DIC is one of the abnormalities that can sometimes be seen in CFS patients. But the presence of crimson crescents along the tonsillary pillars is a huge indication that you are probably dealing with CFS.

    Unfortunately, much of what I said lacks evidence in medical journals but has been observed over and over again in a clinical setting for over 25 years. I have emailed, researchers to look at this over and over. I have seen what looks like a lot of interest, but none of the researchers I have talked to have actually followed through to produce simple studies such as looking at crimson crescents along the tonsillary pillars. A biopsy of this area may even give clue to what could be driving what appears to be a seemingly mild but abnormal and very visible inflammatory process.

    If you can’t get researchers to produce evidence, evidence-based medicine can be essentially worthless. It seems that the best evidence for now comes from years and years of clinical practice and only inaccurate or outdated rubbish is coming from the CDC and NIH when it comes to CFS and post-Lyme syndrome.

    All that being said, there needs to be less focus on blaming the patients and physicians for an improper diagnosis and more focus and research on what it really is and how we can treat the condition or at least ease the suffering. Open your eyes, hold your judgements, and help people that are suffering instead of criticizing them when you really don’t know either.

    1. WilliamLawrenceUtridge says:

      When you start talking about other borrelia (some were in the relapsing fever variety and reclassified as Lyme disease), tests may be seronegative depending on the strain.

      [citation needed], not to mention did the panel that established the current testing protocol ignore this apparent fact? The whole area is hampered by the fact that Lyme was only discovered relatively recently, considerable research still needs to be done on the tick, the bacteria, its variations and the human response.

      However, while these patients may not have Lyme disease, that isn’t to say they are sick or faking it. In fact, the immune abnormalities of those who are labeled as chronic Lyme disease often looks very similar or identical to those of CFS. Of course, the cause or causes of CFS are elusive, but may involve a chronic or hit and run infection of several varieties (virus, bacteria, protozoa).

      …assuming there are reliable immune abnormalities for both CFS and chronic “Lyme” disease. This is claimed by proponents of biological etiologies for both conditions, but the reality is that these are assertions that have not been substantiated in a convincing manner. The causes of CFS and chronic “Lyme” disease are doubtless myriad and for a part of that “bucket” of wastebasket diagnoses of inclusion, there will be some whose illness is purely psychogenic. That’s not to say they aren’t suffering, only that the idea of a psychogenic illness or psychological treatment should not be treated as an insult.

      There are many conditions that exist at the borders of scientific respectability that are united by being of uncertain cause, with vague symptoms and no specific diagnosis of inclusion based on objective testing or measures. There will always be such a group of conditions, because they are at the borders of science. Some people will be those with missed or erroneously-diagnosed conditions. Some will have a novel disease that is not scientifically appreciated (like actual Lyme disease a century ago). Some will be expressing somatically a psychological issue, because our society does not respect purely mental problems. For women, this seems to be through tremendous fatigue, for men this seems to be through back pain (the ratios of each are assymetrical in complementary ways). But for anyone, critic or supporter, to claim that they know the cause of CFS or chronic “Lyme” disease absolutely, is an error.

      A way to differentiate that lacks studies is that CFS patients will often have a low sed rate.

      If it lacks studies, how do you know it is a reliable way to differentiate CFS patients?

      But the presence of crimson crescents along the tonsillary pillars is a huge indication that you are probably dealing with CFS.

      [citation needed]

      Unfortunately, much of what I said lacks evidence in medical journals but has been observed over and over again in a clinical setting for over 25 years.

      Clinically, the removal of blood through leeches and lancets was seen to improve symptoms and heal diseases for around two thousand years.*

      If a true effect is being observed, then it can be replicated in well-controlled, blinded trials. Until that happens, 25 years of clinical observations are 25 years of anecdotes with tremendous ability to confirm one’s existing biases. Where are these 25 years of clinical observations coming from? If it’s coming from a single group of clinicians who are already committed to and believers in a specific etiology, then history has a long list of lessons that can be learned from similar circumstances.

      I have emailed, researchers to look at this over and over. I have seen what looks like a lot of interest, but none of the researchers I have talked to have actually followed through to produce simple studies such as looking at crimson crescents along the tonsillary pillars.

      That is a shame. But if the studies found that such a test were unable to distinguish non-CFS/C”L”D patients from healthy controls or those with a well-recognized diagnosis, would you abandon your belief in the reliability of the clinical observations you currently hold to with such certainty?

      All that being said, there needs to be less focus on blaming the patients and physicians for an improper diagnosis and more focus and research on what it really is and how we can treat the condition or at least ease the suffering. Open your eyes, hold your judgements, and help people that are suffering instead of criticizing them when you really don’t know either.

      Part of opening one’s eyes is opening one’s eyes to the possibility of being wrong. CFS and chronic “Lyme” disease are both uncertain, with certainties claimed but not proven. What I’m specifically criticizing is the certainty with which many patients hold to a single idea, such as your claim of certainty about CFS being a post-infectious condition. Given how CFS is diagnosed, there is absolutely zero doubt that some patients are somatizing. It will inevitably be a condition of etiological heterogenity, which makes research on the topic extremely difficult to conduct. It would be much, much easier if CFS were actually caused by a single entity rather than being a diagnosis of exclusion, but the reality and epidemiology of the situation is that there will never be a single “cause” of CFS. Which is frustrating for everyone.

      *Note to self, look up when Galen died.

      1. Peter S says:

        I have a variety of chronic symptoms that doctors with different confirmation biases have attributed to CFS and so-called chronic Lyme (allegedly confirmed by one of the labs referred to in the article), but at the end of the day, there is no pathogen other than life — it’s extreme stress, anxiety, and a tendency to express somatically.

        1. WilliamLawrenceUtridge says:

          And though I hammer the point repeatedly, I’m not saying that everyone diagnosed with CFS (a real diagnosis, and a shitty one ’cause it’s basically useless and doesn’t tell you anything but “you’ve been tired for a long time and we don’t know why”) is somatizing. Only that inevitably some within that diagnostic group inevitably are. Some will have undaignosed abdominal aoritic aneurysms, some will have subclinical infections, some will have myasthenia gravis that has been misdiagnosed or presents atypically, some will have a novel pathogen, etc. etc. etc. It might as well be called “idiopathic fatigue” because that’s what it is. Psychological etiologies, assessments and treatments should be considered as part of the process. If it doesn’t help, then perhaps it’s something else – and hopefully you’ve learned some skills or reoriented yourself to your new limitations.

          But what really doesn’t help is insisting its an infectious etiology that needs pills to treat it in all cases. That’s bullshit.

          1. Peter S says:

            Most people are very resistant to the notion that the mind can produce very real physical symptoms. But the same people don’t seem to doubt that they blush when embarrassed, or sweat when nervous, or freeze at a sudden terrifying external stimulus. Sure, I agree, many cases doubtless have some pathology as well as a psychogenic component. But the relentless insistence that all chronic illness can only be explained by infections, or toxins, or whatever; and worse, the relentless insistence that by endlessly tweaking a supplement regime one eventually will find the cure; do not mesh with my personal experience.

            Alternative medicine has SO many pathologies with roughly the same symptoms: CFS, fibromyalgia, chronic Lyme, subclinical hypothyroidism, mold toxicity, adrenal fatigue, heavy metals, candida, food allergies, toxic root canals and cavitations, dental amalgam poisoning, where does is stop?

            Just a guess, more people have been helped by lowering their stress levels or increasing their adaptive skills than all the supplement regimes out there. Heresy to a CAM practitioner, I know.

            1. Mike H. says:

              I would argue that many have the same symptoms because the wrong labels are being applied to the same syndromes.

              As far as methylation, B12 and Folate have been effective therapies in a subgroup for many years. However, some get worse with such therapies… such as strange anaphylactic responses or histaminergic responses to folate that really aren’t seen with any other pathology that I know of.

              Further, many patients have things like low glutathione, high homocysteine, abnormal methyl malaonic acid.

              So while there are quite apparent and obvious problems going on in subgroups of these patients, trial and error nutritional supplementation (the way it’s been done for decades) without any genetic SNP testing is probably the best approach.

              Fortunately, there is a several hundred thousand dollar study taking place (I want to say by Lipkin WI from Columbia or a clinic that works with Stanford, but I forget at the moment) to assess these therapies, the MTHFR genes, and responses.

              Unfortunately, I don’t think a double-blinded study for this will work because of how differently each individual responds to B12 and Folate. I would predict there will be a lot of dropouts that can’t tolerate the vitamins or dosing, and a lot of people that have a bad or nocebo type response. And some patients experience feeling better, followed by a worsening period, and then they feel much better. But even though I predict that this this trial will be unsuccessful because of methodology, it doesn’t mean that supplementation with such vitamins doesn’t work. It does indeed need to be personalized.

              It’s very true that psychology can cause physical interest. I have great interest in psychoneuroimmunology. I also believe – and know people that go into remission after starting things like meditation, biofeedback, neurofeedback, a simple change in outlook, etc. I think this can happen with many chronic disease states actually. This doesn’t mean the disease wasn’t physical – I think it’s just under-appreciated how powerful the mind and your outlook can be.

              But that being said, some patients give it their all with their diet, stress, meditation, biofeedback, etc, but they don’t physically get any better.

              I am sort of getting off subject. While Lyme is very prevalent, patients and doctors are often misguided thinking their Lupus, Sjorgens, MS, CFS, etc is caused by a Lyme pathogen.

              Some patients come in with other treatable tick-borne disease that their doctor fails to look for such as Babesiosis and ehrlichia. Some have viral infections, other bacterial or opportunistic bacterial infections, parasitic infections, or protozoa that we may be able to treat. Some infections unfortunately can’t be treated.

              Stanford has a decent (but quite conservative) page on the infectious etiologies that can be comorbid with or in some cases mimic CFS: http://chronicfatigue.stanford.edu/infections/

              What we really need is a shotgun approach to pathogen testing. The technology is here and is cheap (see http://www.theranos.com), but I think it’s fair to say this type of technology may take a while to go mainstream as conventional labs probably don’t want to simplify testing and make it more affordable.

              And if you look at the science, you can actually rule in or out a CFS diagnosis just like you do with Lupus, Sjorgens, MS. The CDC says it’s a diagnosis of exclusion of course, but you are looking at science and not what the CDC says, right? Because the CDC isn’t looking at the science. And because of the high comorbity of organic and situational Anxiety and Depression with CFS and other physical things like comorbid dysautonomia/POTS and high herpes virus titers, using it as a diagnosis of exclusion could misclassify most of these patients with psychiatric disorders or merely a symptom of the syndrome.

              Lyme disease is a bit harder to rule in and out if you come across a seronegative case because researchers and academia generally aren’t pursuing biomarkers for “chronic Lyme disease”, post-Lyme syndrome or whatever you want to label to be.

              1. Peter S says:

                “And if you look at the science, you can actually rule in or out a CFS diagnosis just like you do with Lupus, Sjorgens, MS. ”

                How? I ask out of extreme curiosity, not being flippant.

              2. Mike H. says:

                Well, the answer isn’t a simple one.

                Probably one of the best and easiest methods to assess “does this person have CFS or not” is a 2 day cycle ergometry VO2 test.

                I believe the VO2 tests have been replicated about 5 or 6 times now if I remember right. I could be slightly off on that figure. It’s a bit hard to type all the correct terms in PubMed to pull up all the relevant studies since this type of testing goes by multiple names. Some studies do a 1 day test which is usually not adequate so you have to ignore those.

                On day 2 is when you really start seeing the abnormalities in the test along with accentuated oxidative stress.

                This is a pretty good paper on the phenomenon: http://phoenixrising.me/archives/17902

                Surprisingly, you can get pre-approved testing covered by several insurance companies from the few specialists that do it. There is also some strange responses in cortisol and HGH on exercise. I am not sure if these abnormalities are in the literature as of yet. However, this testing also works really good as proof of disability. It’s generally considered irrefutable evidence of disability.

                Cytotoxic activity of NK Cells (CD56 in particular) is often decreased in CFS patients, and there are many studies that show this. over many decades. There are other immune abnormalities, but this one in particular can be assessed by conventional lab testing.

                http://www.ncbi.nlm.nih.gov/pubmed/?term=CD56%2B+CFS

                And some less researched problem you see in CFS is coagulopathy such as DIC. It used to be that you had to run the ISAC panel through Hemex labs to assess for this, but LabCorp acquired Hemex and you can now get these tests done and often covered by insurance.

                PMID: 10695770

                When you start seeing that the patient fails these exercise tests, has orthostatic intolerance (POTS), and has some other weird things. POTS can be assessed by an electrophysiologist on a tilt table. It used to be that the electrophysiologists would miss some cases because they didn’t know blood pressure can rise in a subset of patients instead of drop when you are tilted up. I would still use a cardiologist and electrophysiologist that is very familiar with POTS for more comprehensive assessment and accurate diagnosis.

                http://www.ncbi.nlm.nih.gov/pubmed/?term=%22POTS%22+AND+%22Chronic+fatigue+syndrome

                And then there are really rudimentary tests you can do. Such as have the patient do an EKG treadmill test. They may seem fine afterwards, but in around +/- 24 hours they may enter a state of post-exertional malaise. This isn’t a typical feeling tired after exercise. it’s more like how a Lupus patient feels on a flare. Very, very sick. Sometimes with neurological symptoms such as sensitivities to light, sound, etc.

                So recommending aerobic exercise is obviously a bad idea. But exercise is still important so anaerobic exercise, walking, slow ride on a stationary bike, etc. Without exercise the dysautonomia symptoms can worsen.

                I mentioned all these things, but some of the simplest things that have not yet been scientifically validated is the abnormally low sed rates (especially in very sick patients), and the crimson crescents along the tonsillary pillars I talked about before. If they aren’t present, I think the cause may be something else. Because of lack of research, it’s hard to know if every true CFS patient have these or just the majority. Some of the normal population (around 4% or so) has them. It’s hard to say what this means. It’s amazing to me that all this money and time is spent on research, but sometimes we fail to observe what’s right in front of our eyes. In my opinion, this is a phenomenon that every physician should know about, but 99.99% ignore this sign and have never heard of it. Once they are taught to look for it, they see the same thing I do and wonder how they missed it their entire career.

              3. Harriet Hall says:

                The differences you cite may be real, but they do not answer the question “does this person have CFS or not.” For that, we would need to know the prevalence of the disease in the population being tested, and the sensitivity and specificity of the test. If a positive result occurs more frequently in people without the disease than in those with the disease (more false positives than true positives), the test would be useless.

              4. Mike H. says:

                I forgot to mentioned elevated herpes virus titers too. That’s another really good clue. Not everyone has them though and the people that do may have elevated titers to different herpes viruses.

              5. Mike H. says:

                A lot of citations for cardiopulmonary VO2 testing on this page since I didn’t provide them above: http://www.iacfsme.org/CFSandExercise/tabid/103/default.aspx

              6. Mike H. says:

                I used the first example (the exercise test) because other disease states don’t have that reaction to exercise and it clearly separates CFS vs non-CFS.

                When there is comorbidities like POTS, and elevated herpesvirus titers, decreased CD56 NK cell function, the diagnosis becomes pretty obvious. Of course you would rule out other auto-immune diseases just to be sure.

                No testing is perfect, and if you look hard enough you can probably point out flaws. But this is enough testing to establish a pretty firm diagnosis. The only problem is you may be leaving out subgroups. But my thought is that much of the “subgroups” are probably are misdiagnosed anyway from doctors who used the diagnosis of exclusion method. Even though a diagnosis of exclusion truly makes no sense because of the comorbid syndromes.

              7. Harriet Hall says:

                ” it clearly separates CFS vs non-CFS”

                If that were true, it would be an excellent diagnostic test, and everyone would be using it. There is no diagnostic test for CFS; it is a “syndrome” and the diagnosis is applied to people with a constellation of symptoms after other causes of those symptoms have been ruled out.

              8. Mike H. says:

                If that were true, it would be an excellent diagnostic test, and everyone would be using it.

                The test is used by few. Mainly specialists and researchers.

                If it were a blood test that you could get from LabCorp or Quest, everyone would use it. It will take time for a more complicated test like this to be embraced. But I believe if something better is not found, everyone will be using it. Just a matter of time and as long as politics stay out of the way.

              9. Harriet Hall says:

                “I believe if something better is not found, everyone will be using it.”

                Not unless it can really distinguish those with and without CFS, if there are a lot more true positives than false positives.

              10. WilliamLawrenceUtridge says:

                and know people that go into remission after starting things like meditation, biofeedback, neurofeedback, a simple change in outlook, etc

                And you attribute, in a vague wastebasket syndrome like CFS made up totally of subjective cognitive experiences, to an improvement in the body? Curious and revealing.

                What we really need is a shotgun approach to pathogen testing. The technology is here and is cheap (see http://www.theranos.com), but I think it’s fair to say this type of technology may take a while to go mainstream as conventional labs probably don’t want to simplify testing and make it more affordable.

                How would you accommodate and account for the massive number of type I errors you would see? The reason they don’t just “test everyone for everything” is because in the absence of a good clinical reason to do so, the number of false positives would drown, by an order of magnitude, the number of true positives, for any rare disease like Lyme. Not to mention your assertion contains the seeds of your option that Lyme-related infections are extremely common drivers of diseases in unanticipated ways. That’s your opinion, that doesn’t mean it’s right.

                Because the CDC isn’t looking at the science.

                Why? Because you disagree with what the CDC says?

                Lyme disease is a bit harder to rule in and out if you come across a seronegative case because researchers and academia generally aren’t pursuing biomarkers for “chronic Lyme disease”, post-Lyme syndrome or whatever you want to label to be.

                That’s ’cause chronic Lyme disease doesn’t exist as far as anyone can tell, and there’s no real reason for it to exist. Post-Lyme does, and is being investigated, the primary difference being actual infection by B. b.

              11. WilliamLawrenceUtridge says:

                Probably one of the best and easiest methods to assess “does this person have CFS or not” is a 2 day cycle ergometry VO2 test.

                Who thinks this is not a good assessment method, and why not?

                The actual article oddly lacks figures and tables, at least the version I can see, and the limitations note that “Only individuals with CFS who were able to undergo exercise testing were included in this study” which is a pretty big limitation. It also contradicts the observation that graded exercise therapy can be helpful with CFS. It’ll be interesting to see if this is replicated with a larger control group, but hopefully something interesting does come of it. Of course, single studies rarely, often can’t prove anything. Hopefully this begins the convergence on a set of findings that allows one group bucketed into the CFS wastebasket to be moved out.

                There is also some strange responses in cortisol and HGH on exercise. I am not sure if these abnormalities are in the literature as of yet.

                Then how do you know it’s even a thing?

                So recommending aerobic exercise is obviously a bad idea. But exercise is still important so anaerobic exercise, walking, slow ride on a stationary bike, etc. Without exercise the dysautonomia symptoms can worsen.

                Again, GET has been shown to help some patients. Also, walking and slow riding is aerobic exercise, it’s merely low intensity.

                And my ultimate comment is, when you rarely cite something in the literature, it seems to be a prospective design document, a preliminary clinical trial, something that is generally suggestive, not indicative. To me this suggests your certainty is unwarranted.

              12. Mike H. says:

                I do understand Peter’s perspective. While the evidence is there, there is indeed lack of consensus among gov’t bureaucracies, research/academia, some advocacy organizations, and physician’s with their pet theories. There is also a few psychiatrists in the U.K. (working for large and powerful institutions) that have been trying to push their psychogenic theories for a long time. They have influential the U.K., but researchers in the U.S. and much of their world sort of dismiss their work as they generally fail to provide sufficient evidence for their opinions. There is overwhelming biomedical evidence that ME/CFS is different from anxiety/depression or any other psychological disorder.

              13. WilliamLawrenceUtridge says:

                There is overwhelming biomedical evidence that ME/CFS is different from anxiety/depression or any other psychological disorder.

                Clearly it is not “overwhelming”, otherwise there would be consensus on this fact in the research literature and there is not. Again, you are projecting your confirmation bias onto the scientific literature.

            2. Mike H. says:

              Alternative medicine has SO many pathologies with roughly the same symptoms: CFS, fibromyalgia, chronic Lyme, subclinical hypothyroidism, mold toxicity, adrenal fatigue, heavy metals, candida, food allergies, toxic root canals and cavitations, dental amalgam poisoning, where does is stop?

              I forgot to add: It’s like this because the are in many cases looking at the same pathology.

              You may think, “how is this possible?” Pretty simple actually. These patients first try to allopathic route. They slip through the cracks and are told they are fine. Much of what you mentioned is are CFS. Other things are dubious diagnoses.

              They and their diagnosis slips through the cracks of mainstream medicine and they end up with an alternative medicine practitioner. But what a lot of more scientific practicioners are diagnosing it correctly is CFS. Many of the less scientific alternative practicioners are strangely resistant to the idea of CFS and like all those other labels you listed.

              This is not to say that all these patients have CFS. Some may have a psychiatric illness of any type or another illness that wasn’t ruled out by their allopathic practicioners. But many that slip through the cracks really do have CFS. You don’t have to take my word. I think I’m right. Maybe I’m wrong. History will teach us.

              1. Peter S says:

                When I was much more interested in CFS, a whole host of theories kept being proposed, vehemently defended, and then replaced or rejected. Dr. Cheney seemed to change his mind every year or so — CFS is X, no CFS is Y, no CFS is Z. I think I stopped around the time when he was proposing that CFS was really heart failure. The guy in Belgium seemed to change his principal theory a couple of times, if not more. A researcher who was very popular on patient forums first propounded glutathione deficiency as a defining characteristic, then modified or refined that to methylation cycle blocks. Of course there was the XMRV thing. I recall a prominent advocacy group declaring that a toxin from the ciguatera fish, or something resembling it, had been identified as THE culprit by a doctor in Hawaii. There were always people around the edges saying no it’s really adrenal fatigue, no it’s really biotoxins (Shoemaker). Extremely frustrating for a layperson to navigate.

              2. Mike H. says:

                Dr’s like Dr. Peterson, Dr. Montoya, and Dr. Bateman, Dr. Klimas, and others I left out are more trustworthy.

                Dr. Peterson is actually a really intelligent man, but unfortunately he takes off on these wild tangents sometimes and I think his interest has shifted over time from wanting to figure out the problem to wanting to make a lot of money.

                Interestingly, Dr. Peterson was going to be part of the infamous institute that found XMRV, but being the skeptic that he was, he chose to back out of that project and not be part of the institute. He may have not solved anything, but he’s help set up collaboration between several credible universities.

                There is a huge research that is stalled that use a true Systems Biology approach (DNA/RNA sequencing, microbiome, sequencing everything in the blood, etc) in hopes of figuring things out.

                Unlike before this project is headed by somebody with lots of credibility, the man who discovered the West Nile virus and so many other things – Dr. William Ian Lipkin.

                Only a little over a million from donors is needed to complete the project.

                http://www.microbediscovery.org/the-study/

                Oh, and here’s a really good paper you should check out for patients that are really sick and think their problem is Lyme disease. It really may be one of these other bacteria or viruses, and in my opinion, many of these patients should be screened.

                http://www.benthamscience.com/open/toneuj/articles/V006/SI0078TONEUJ/158TONEUJ.pdf

                Some Lyme-literate and CFS doctors are actually really good at their infectious testing routinely screen (and treat) for all this. While some doctors are immersed in this Lyme culture, some of the Lyme doctors have expressed that they don’t really like using the word Lyme and have said that they would actually would rather call it “mixed infection syndrome” or similar since patients may come up positive for one or more of these other infections.

                http://www.benthamscience.com/open/toneuj/articles/V006/SI0078TONEUJ/158TONEUJ.pdf

              3. Mike H. says:

                I wish I could edit

                I was referring to Cheney, not peterson in this sentence.

                Dr. Cheney is actually a really intelligent man, but unfortunately he takes off on these wild tangents sometimes and I think his interest has shifted over time from wanting to figure out the problem to wanting to make a lot of money.

              4. Peter S says:

                http://www.me-ireland.com/scientific.htm

                Honestly, it seems to me like a hopeless morass at this point, with lots of trees and no forest.

                Listing of Research findings and papers worldwide and categorisation of biological abnormalities and dysfunctions and infections found in ME
                ◦Immune system dysfunction and abnormalities
                ◦Genetic markers
                ◦Severely Damaged Mitochondria and Defective Krebs cycle and ATP production
                ◦Viral infections
                ◦Mycoplasma infections
                ◦Serious Bacteria infections
                ◦Cryptostrongylus Pulmoni infection
                ◦Increased risk of Cancer
                ◦Environmental Toxins, Molds & Mycotoxins, Heavy Metals, Organophosphates
                ◦Orthostatic intolerance & Postural orthostatic tachycardia syndrome (POTS) & Body fluid abnormalities
                ◦Serious Brain and nervous system abnormalities
                ◦Spinal Fluids & Proteomic Markers
                ◦Cognitive Dysfunctions & ‘Brain Fog’
                ◦Effects of Exercise, GET and CBT
                ◦Muscle abnormalities
                ◦Abnormal HPA axis (Hypothalmus Pituary Adrenal axis) & Abnormal glandular functions
                ◦Intestinal Abnormalities and Microbiome
                ◦Cardiac and Vascular and Blood vessel problems. Increased risk of heart attack
                ◦ Idiopathic CD4+ T lymphocytopenia
                ◦Methylation cycle blocks and glutathione deficiency
                ◦Increased oxidative stress
                ◦Channelopathy & Disturbance in the way certain ions (mainly sodium and potassium salts) are transported in and out of cells across the cell membranes
                ◦Sleep abnormalities
                ◦Ciguatera and ME
                ◦Telomere shortening
                ◦Abnormal red blood cell structure
                ◦Inability to metabolise glucose and sugar
                ◦Defects in Lymphatic Drainage
                ◦Lowered oxygen consumption in ME patients
                ◦Substance P is elevated in ME patients
                ◦Abnormal Plasma RNA’s
                ◦Abnormal Urinary metabolites
                ◦The presence of crimson crescents in the mouth
                ◦Beta 2 microglobulin levels as a measure of the severity of the condition
                ◦Abnormal levels of serum Chromogranin-A. Evidence of Celiac disease in some ME patients
                ◦Skin rashes, acne and allergies worsen after the onset of ME
                ◦Clonal Excess Abnormality
                ◦Other Serious Abnormalities
                ◦Sub-groups within ME

                Research Findings
                The scientific research shows that ME is a chronic disabling physical illness, which involves multiple dysfunctions and abnormalities. The research strongly suggests the illness involves the following :
                (1) Immune system dysfunctions and deficiencies caused and accompanied by viral / mycoplasma / pathogen infection (active and latent) and/or toxins. Defects in the 2-5a synthetase / RnaseL anti-viral pathway & PKR pathway with effects on immune system function and important ion channels which in turn has multiple domino effects on the body. Low numbers of NK cells and reduced NK cell function and cytotoxicity. Chronic immune system activation with dominance of pro-inflammatory cytokines. T reg cell abnormalities and an abnormal CD4/CD8 ratio. Autoimmunity, with strong indications of B cell abnormalities. Gastrointestinal abnormalities which contribute to immune system dysfunctions and chronic infection. Increased vulnerability to opportunistic infections over time. Also in subgroups, significant evidence of chronic inflammatory immune system from regular exposure to molds and mycotoxins. The chronically activated inflammatory immune system causes many adverse effects on the body over time.
                (2) in most cases continuing viral, mycoplasma, bacteria and other pathogen infections (both active and latent, including partially latent) of the nervous system, nerve junctions, brain, immune system cells, intestines, joints, muscles, and other body organs. These infections may be causative, opportunistic or a co-factor in the illness. High levels of oxidative and nitrosative stress arising from chronic immune system inflammation, infections, immune system and cellular dysfunctions, and toxin build up.
                (3) toxic build up in the body. Flow reversal in the liver and the brain. Chronic Cerbral Spinal Venous Insufficiency (CCSVI). Chronic Hepatic Venous Insufficiency (CHVI). Cardiac Dysfunction. This reversal leads to auto-intoxication and a build up of toxins and toxin related damage to cells, tissues, organs, glands, immune system, nervous system, mitochondria and ATP production with serious effects for the patient over time. Cardiac dysfunction is believed to play a key role in the initiation of this flow reversal.
                (4) dysfunctions of the central nervous system, the brain and the autonomic nervous system, and involves significant chronic inflammation, lesions, reductions in grey and white matter, brain hypoperfusion, increased ventricular lactate, spinal fluid abnormalities, autonomic dysfunctions and other abnormalities. This resulting from infections, a chronically activated inflammatory immune system, toxins, defects in oxygen transport and absorption, and mitochondria damage and dysfunctions. This adversely affects many other body functions.
                (5) ATP, mitochondria & krebs cycle dysfunctions and abnormalities. Including abnormal mitochondria destruction and abnormal mitochondria membranes, structures and electron transport, which adversely affects the entire body. This is due to chronic infections, a chronically activated inflammatory immune system, toxins and the high levels of oxidative and nitrosative stress. This is the most important factor as the mitochondria and krebs cycle produces ATP, and the immune system, the nervous system, the brain, the muscles, the heart, the glands, and all the organs rely on the mitochondria and ATP. Any significant deficiency in ATP will cause a slow down in the activity of these organs and the body, and more serious deficiencies can cause extreme tiredness most or all of the time. The mitochondria and ATP govern states of tiredness and exhausation. This explains the VO2 max abnormality and post-exercise malaise commonly found in ME patients. Cardiac dysfunctions in ME are related to these mitochondria dysfunctions and chronic infections and inflammatory damage.
                (6) methylation cycle blocks and glutathione deficiency throughout the body. The methylation cycle is important and produces many substrates and co-factors for other body organs and processes, including the mitochondria. Deficient glutathione increases oxidative and nitrosative stress and this contributes to mitochondria abnormalities and dysfunctions.
                (7) HPA axis dysfunctions, in particular hypothalmus gland, adrenal gland and thyroid gland dysfunctions and abnormal hormone output, which adversely affects hormones, sleep and immune function. This itself is related to the brain and neurological dysfunctions mentioned above.

                All of these 7 factors are the core of the illness, the perpetuating factors over time found in all ME patients at phase 1, 2 or 3 of the illness. In the case of the 2-5a synthetase / RnaseL anti-viral pathway, it is believed that human leukocyte elastase and/or calpain cleaves the 80 kDa form of RnaseL into 37 kDa RnaseL, cleaves STAT1-alpha protein and p53 protein and Actin, bringing about deficiencies in these proteins. These proteins are essential for normal immune system function, and their depletion and abscence leads to serious and continuing immune system dysfunction. And there is an accompanying increase in NF-Kb levels and activity which is pro-inflammatory and pro-Cancer. The 7 initial disruptions / injuries, numbered (1) to (7) above persists over time and has a domino effect on other cellular functions and body functions leading on to several other dysfunctions, and to severe illness. Causes may have several orgins, according to scientific research.

              5. Harriet Hall says:

                You have cut and pasted a long list from a website with an agenda. The statement “All of these 7 factors are the core of the illness, the perpetuating factors over time found in all ME patients” is not supported by any references, and I seriously question its accuracy.

              6. WilliamLawrenceUtridge says:

                I forgot to add: It’s like this because the are in many cases looking at the same pathology.

                Oh bullshit, says you. The diagnosis is one of exclusion. You get a diagnosis of “chronic fatigue syndrome” whey they don’t know what else is wrong with you and you fit within a general category of symptoms that are pretty vague. The idea that all of them have the same pathology is absurd. CFS is a placeholder that will probably never go away, it’s certainly not a truly meaningful diagnostic category.

              7. Mike H. says:

                That’s an excellent lister Peter S. Thanks for sharing.

                As far as exercise goes, your correct. I was referring to high intensity aerobic exercise as bad. Anaerobic and low intensitiy aerobic exercise can be beneficial if the patient stay within the limits.

                However, I am a bit unclear where you stand. In one sense, you seem to have healthy skepticism, which is good. In another sense, you seem curious if some type of homeopathic treatment will help with Autism.

                This isn’t criticism in any way, but it seems from your experience, do you feel a bit lost on who and what to believe?

                Do you believe ME/CFS is a real syndrome and not a wastebasket diagnosis if properly diagnosed. Honestly, with all the documented abnormalities and with the history of the illness itself I really don’t understand why someone would believe that it is some kind of made up syndrome.

                It seems that some here are apparently more pseudoskeptics or cynics than skeptics. This is more of an observation on my part than an insult against anybody. That, or they can’t wrap their head around how someone ME/CFS (which can look invisible from the outside) could possibly be suffering so much. Or maybe they just believe government over science.

                I am not denying that it’s true that CFS is very often used as a wastebasket diagnosis, but it’s completely untrue that ME/CFS is not real syndrome that can’t properly diagnosed with support of appropriate testing.

                It is true that the condition lacks good treatments. But just because good treatments are not developed yet doesn’t equate to something being psychosomatic. It’s extremely clear from all the research over decades that ME/CFS is a real, organic. medically distinct syndrome. And once again, the information Peter copy/pasted is excellent and does support all the peer-reviewed literature (even if not properly cited from the source he got it from).

              8. Peter S says:

                Mike H. — I am not a medical professional, just a long-term patient and parent of an autistic child now adult, so my opinion is not meaningful. But to answer your questions.

                1. I have no doubt that there are countless people who experience fatigue and a variety of associated symptoms involving multiple systems. Whether they have a well-defined clinical entity, or whether there are multiple distinct or overlapping causes, I have no idea, except that I am pretty sure that at least SOME — I have no idea how many — people who roughly would fit into some definitions of CFS/ME are suffering principally from stress/depression/anxiety/somatization. I would include myself in that category. I can only observe that during the period of time when I was interested in CFS/ME because I did not accept psychogenic explanations for physical symptoms, and followed the patient forums and online literature, there was nothing remotely resembling a consensus, and each leading figure in the field seemed to have his or her own pet theory of causation and pet “markers” or other tests they said were indicative or diagnostic of the syndrome, and that some of these leading figures seemed to then change their minds, in some cases radically (e.g. Paul Cheney). I’m not smart or educated enough in the field to know what this means, I would not presume to make any pronouncements. I only observe that it seems to me to be a morass even after 30 years since the Tahoe thing, and during the years I followed it, it didn’t seem to me there was a lot of progress in terms of identifying cause or diagnosis or treatment. I could be wrong.

                Re autism, no, I am sure homeopathy and the utterly ludicrous treatment I referenced from the NY “doctor” does not cure autism, or Lyme which was why I first posted the link. To me anyone who makes that claim is a scam artist. I posted it not because I was curious about it at all, but to call attention to how outrageous lymelits and “energy” medicine types can be.

              9. WilliamLawrenceUtridge says:

                Ah, pseudoskepticism, the condition found when someone exhibits healthy skepticism of one’s favourite One True Cause of whatever you believe in. “I notice that you look like a skeptic because you rightly point out there is no empirical support for my claim in the peer-reviewed literature, but you are clearly a pseudoskeptic because even though there is no empirical support for my claim in the peer-reviewed literature, my idea is the right one.”

                Great, if your idea is the right one, then eventually the science will back you up. It hasn’t happened yet, so please don’t call others pseudoskeptical merely because they don’t believe you.

                That, or they can’t wrap their head around how someone ME/CFS (which can look invisible from the outside) could possibly be suffering so much. Or maybe they just believe government over science.

                I certainly believe that people with CFS can suffer and are suffering – I merely disbelieve that there is a single cause or will ever be a single cause identified. I also disbelieve that certainty on the matter is warranted. But I do strongly believe that the branches of the government designed to examine scientific and health-based questions are worthy of respect and that their opinions should be listened. I don’t believe there is any reason for the government to support the unnecessary suffering of its citizens, and I do believe that in many cases the people who are suffering are too close to their suffering to maintain objectivity.

                but it’s completely untrue that ME/CFS is not real syndrome that can’t properly diagnosed with support of appropriate testing.

                ME/CFS is a syndrome because it has no real objective tests or etiology; if it had these things, it would become something else. And your definition of “appropriate testing” is currently not a universally-accepted definition, and by the very source you provide would actually exclude a significant portion of of those currently diagnosed with CFS. But I guess they don’t have real CFS then.

                It is true that the condition lacks good treatments. But just because good treatments are not developed yet doesn’t equate to something being psychosomatic.

                Never said it did. All I ever said was that a portion of those with CFS will have symptoms purely based on psychological rather than physical causes. Doesn’t mean their suffering is less than that of others, and it’s rather offensive that so many with CFS take offence to this statement. If they ever identify a physical cause of some CFS patients’ symptoms, does that make them “better” than those with purely psychological CFS? Because that’s the statement you’re making.

                It’s extremely clear from all the research over decades that ME/CFS is a real, organic. medically distinct syndrome.

                No it’s not, or that’s what the consensus would be. I’m sure many patients want to think this, but it doesn’t mean it’s true. No physical signs or objective tests are yet accepted to diagnose CFS, just a mish-mash of “fatigue plus some but not all of these other nondiagnostic symptoms”. It’s a wastebasket. I do hope your tests can be useful at distinguishing a subset of CFS patients, but I am not going to believe you merely because you are selective in presentation of your evidence.

                And once again, the information Peter copy/pasted is excellent and does support all the peer-reviewed literature (even if not properly cited from the source he got it from).

                Peter himself noted that the list was a hopeless morass and offered no good answers – as is evident from such a massive copy-paste of mingled conditions of wildly different causes. They are all alleged etiologies, not proven etiologies. Merely because you prefer them over other competing explanations doesn’t make them true.

              10. Mike H. says:

                The vast majority of what Peter copy/pasted is backed up in peer-reviewed studies. And much of it has been replicated over and over throughout the years. You can dig it up on PubMed if you don’t believe it.

                No, the CDC doesn’t support the science. It doesn’t support the consensus from the most esteemed the experts – the people that have been physicians and researchers that have been working to understand the condition for many years.

                These experts had one request since they themselves don’t trust our government to come up with an accurate case definition.

                Thirty-five of the most esteemed experts sent a letter of the CDC to stop the IOM workshop project come up with a new case definition for CFS, and simply adopt the Canadian Census Criteria ME/CFS case definition.

                This isn’t my opinion. It’s fact.

                http://www.prohealth.com/library/showarticle.cfm?libid=18369

                Ask the experts that meet with these the CDC, NIH, and HHS on at least a yearly basis. Ask them if they think the government has our best interests. They would likely all answer no. I would be very surprised if any of the experts answers yes.

                Follow the science, not the government. Plenty of peer-reviewed studies exist showing distinct abnormalities and many have been reproduced since the early 90′s. If you want to ignore the facts and stick to your beliefs instead, you are entitled to do that.

                The evidence is there. Even with the small amount of funding CFS research gets, there is a mountain of it. It can most certainly be convincing if you read and comprehend it. And much of it has been replicated again and again by credible research institutes and universities.

              11. Mike H. says:

                I do understand Peter’s position. While I don’t think the science is lying to us, the alternative pet theories and the disagreements between researchers, physicans, academia, advocacy groups, and patients can make things very confusing. It’s a tough to navigate, and it’s hard to know who to trust.

                While the evidence is there, there is indeed lack of consensus among gov’t bureaucracies, research/academia, some advocacy organizations, and physician’s with their pet theories. There is also a few psychiatrists in the U.K. (working for large and powerful institutions) that have been trying to push their psychogenic theories for a long time. They have influential the U.K., but researchers in the U.S. and much of their world sort of dismiss their work as they generally fail to provide sufficient evidence for their opinions. There is overwhelming biomedical evidence that ME/CFS is different from anxiety/depression or any other psychological disorder.

              12. Peter S says:

                Mike H. — many of those names are familiar to me. Any idea why Tony Komaroff and Charles Lapp did not join, as I recall they were pretty prominent in these circles? Isn’t cognitive dysfunction part of the Canadian consensus definition too?

              13. Mike H. says:

                Peter – I don’t know. Could be anything. Maybe they don’t think CCC criteria is sufficient for whatever reason. It’s possible that they fear that their institution, employer, or people they work for may look down upon them for whatever reasons. I think it’s entirely possible they may fear losing grant money from the Federal government or drug companies if they sign. Or maybe they just don’t want to take part in the politics.

                These are just a few guesses, but I really don’t know. Most major names signed though, but I would by no means expect a 100% expert consensus on this or any other issue.

              14. WilliamLawrenceUtridge says:

                The vast majority of what Peter copy/pasted is backed up in peer-reviewed studies. And much of it has been replicated over and over throughout the years. You can dig it up on PubMed if you don’t believe it.

                Yes, I’m sure one can cherry-pick individual studies to support these points. That’s very different from a convergence of evidence on a single etiology or even set of biological markers.

                No, the CDC doesn’t support the science. It doesn’t support the consensus from the most esteemed the experts – the people that have been physicians and researchers that have been working to understand the condition for many years.

                Probably because the CDC doesn’t see a signal in the noise – there are still “dueling experts” who propose different etiologies and fail to arrive at a single convincing set of replicated findings. Which again points to a wastebasket diagnosis.

                Thirty-five of the most esteemed experts sent a letter of the CDC to stop the IOM workshop project come up with a new case definition for CFS, and simply adopt the Canadian Census Criteria ME/CFS case definition.

                Esteemed by who? You? Who disagreed with them? Only UK physicians part of large, powerful institutions who are keeping CFS patients down, for presumably nebulous reasons?

                This isn’t my opinion. It’s fact.

                That’s not a fact, that’s a form letter. Are there dissenters? Why do they dissent? Why is this published in the form of a letter to legislators rather than a peer-reviewed publication showing the convergence of evidence on a single conclusion?

                Again – certainty where none is warranted.

                Ask the experts that meet with these the CDC, NIH, and HHS on at least a yearly basis. Ask them if they think the government has our best interests. They would likely all answer no. I would be very surprised if any of the experts answers yes.

                I would be surprised if you are aware of the experts who say yes, bar perhaps to disparage their work.

                And much of it has been replicated again and again by credible research institutes and universities.I’m very curious why there isn’t a scholarly consensus then.

                Spite?

                Maybe they don’t think CCC criteria is sufficient for whatever reason. It’s possible that they fear that their institution, employer, or people they work for may look down upon them for whatever reasons. I think it’s entirely possible they may fear losing grant money from the Federal government or drug companies if they sign. Or maybe they just don’t want to take part in the politics.

                See, this is pseudoskepticism – familiarity with only one side of the disagreement, followed by a blatant ad hominem and accusation of greed and conflict of interest. It’s not that they are honest scholars with genuine concerns with the issues and claims. No, they must be bad faith actors because they disagree with me.

                If you don’t know – maybe you should find out, but not starting from the assumption that they hate CFS patients or are greedy monsters.

                Most major names signed though, but I would by no means expect a 100% expert consensus on this or any other issue.

                Yeah…generally when the evidence is convincing, you get nearly 100% agreement. The lack suggests that the data isn’t particularly convincing. Scholarly debates are normal and healthy, and are resolved through data. Prematurely proclaiming a consensus or solution actually delays finding the true solution, as does advocating for direct change through government your representative. Your actions are counterproductive.

              15. Mike H. says:

                If you don’t know – maybe you should find out, but not starting from the assumption that they hate CFS patients or are greedy monsters.

                I never said this. Nor do I think the any prominent figure that didn’t sign were nefarious or had ill-intentions. I only stated possible scenarios as to why some might not sign since Peter asked.

                Even if they didn’t sign out of fear of losing grant money, I certainly wouldn’t vilify them for doing so. I would probably do the same – whatever I could to get all the research money I can. Unfortunately, ME/CFS in general is a controversial issue, so you have to tread carefully.

                I think you misunderstood me as no accusations have been made.

                And I am not going to name anybody in particular, but there are psychiatrists in the U.K. at major hospitals that care more about their opinion than the state of the scientific evidence. From an authoritative standpoint, they are considered credible. But from a scientific standpoint, they aren’t credible. They may have a few other psychiatrists that side with them, but those that truly understand the state of research and unique biomedical and physiological aspects of the syndrome generally ignore them.

                But let me be real clear once again. I am not attacking anyone.

              16. Mike H. says:

                Probably because the CDC doesn’t see a signal in the noise – there are still “dueling experts” who propose different etiologies and fail to arrive at a single convincing set of replicated findings. Which again points to a wastebasket diagnosis.

                That is definitely part of the problem. But it’s not the whole story. I recommend reading the book Osler’s Web.

                Esteemed by who? You? Who disagreed with them? Only UK physicians part of large, powerful institutions who are keeping CFS patients down, for presumably nebulous reasons?

                There is no researcher ranking system as far as I know. But these are people who work for credible universities, research institutions, and physicians/researchers who have published much of the existing ME/CFS literature. They are generally seen as credible by the science community (those who know them and their work), and generally publish in credible peer-reviewed medical journals. And there are great researchers in the U.K.

                There are just a couple psychiatrists that would rather ignore all the biomedical research and publish from what my opinion is a lot of nonsense. They may really believe in what they are doing and may have absolutely no ill-intentions, but in my opinion and many experts opinions, they are misguided. Their unscientific opinions get much more weight than they should (especially in the U.K.) since most doctors don’t have the time to carefully sort through and understand all the evidence.

                It’s not that I disagree with them because it’s convenient to do so. I don’t agree with them because they have may anti-science beliefs.

                I sort of feel like I am repeating myself at this point.

            3. Borrelia says:

              One of the biggest mistakes in medicine is to assume that what is good for one is good for all. In your case, you understand that your health issues are stress related and your chosen treatment works great for you. I think patients are and should be advocates for themselves. Only they know what they are really experiencing. As for a lot of the issues being caused by the mind, I would agree the mind is powerful, but one has to consider all the variables that come into play because each individual is unique. Genetics is disproving the one-size-fits-all treatments that are so much a part of medicine today. Genetic makeup plays a much larger role in one’s physical response to medication and other stimuli, including pathogens. Depression, for example, can cause permanent chemical imbalances in some persons that is not recoverable without the use of medication, while another person is able to recover with some rest and relaxation. Epigenetics is a hot topic right now and one I’m excited about. Here is one example of what they are finding: http://www.washingtonpost.com/national/health-science/study-finds-that-fear-can-travel-quickly-through-generations-of-mice-dna/2013/12/07/94dc97f2-5e8e-11e3-bc56-c6ca94801fac_story.html
              The physical changes that occur as a result of epigenetics can be passed down for generations causing the descendants of a Holocaust survivor to have an exaggerated response or even block an appropriate response to these stimuli as compared to the response we might expect to be the “normal” response.

              These slight genetic variations in individuals can play a significant role in reaction to any particular treatment regimen.

              So what is good for the goose is not always good for the gander is my point and I’m hoping epigenetics and genetics in general will change medicine in the future so that diagnoses can be made more easily and treatments can be appropriately customized to each patient.

              1. WilliamLawrenceUtridge says:

                One of the biggest mistakes in medicine is to assume that what is good for one is good for all.

                Sure, but an even bigger mistake is to assume that if it works for one person it must work for everybody. Anecdotes are suggestive, not conclusive.

                I think patients are and should be advocates for themselves.

                Sure, but if that patient is advocating something dangerous and antiscientific, I think it’s incumbent on their doctor to be honest and treat them like a grown-up rather than telling them comforting lies.

                The physical changes that occur as a result of epigenetics can be passed down for generations causing the descendants of a Holocaust survivor to have an exaggerated response or even block an appropriate response to these stimuli as compared to the response we might expect to be the “normal” response.

                Sure, but these effects are relatively minor, and are often over-ridden by more immediate events (and are rapidly diluted over successive generations). A Holocaust survivor’s child might have an exagerrated startle reflex compared to someone with the exact same genes and rearing, but whether they have been abused or not will make a much, much bigger difference. The reason epigenetics took this long to discover is that the effects are far more subtle than direct experiences and conventional genetics.

                These slight genetic variations in individuals can play a significant role in reaction to any particular treatment regimen.

                Yes, you’re talking about single nucleotide polymorphisms and methylation. They can in certain cases make a significant difference, if they have high penetrance. In other cases, their contribution is minor. It depends, it is complicated, and it’s not magic.

                I’m hoping epigenetics and genetics in general will change medicine in the future so that diagnoses can be made more easily and treatments can be appropriately customized to each patient.

                Everyone hopes this, and it’ll take a while before we see significant results from this. In the meantime, unconventional lyme tests are bogus and long-term antibiotic treatment is a frank danger.

          2. Peter S says:

            I should have included in my list methylation cycle defects. That’s become very much in vogue now in the online forums. Lots of folks tailoring their supplement regimes to their SNPs.

      2. whoa says:

        “That’s not to say they aren’t suffering, only that the idea of a psychogenic illness or psychological treatment should not be treated as an insult. ”

        It is an insult, but even worse it is total BS. Easier for MDs, though, to dismiss and discredit patients they fail to diagnose.

        One thing I consider very ironic is that mainstream MDs seem to ignore the fact that pathogens, like all organisms, are always evolving.

        1. WilliamLawrenceUtridge says:

          It is an insult, but even worse it is total BS. Easier for MDs, though, to dismiss and discredit patients they fail to diagnose.

          So even though Peter S just said his fatigue was psychogenic and stress-based, he’s lying or mistaken?

          I thought you didn’t have time for blogs. Are you back here because you so thoroughly got your ass handed to you on another thread, you want to start over here and hope nobody notices your previous failures?

          One thing I consider very ironic is that mainstream MDs seem to ignore the fact that pathogens, like all organisms, are always evolving.

          Are you fucking kidding me? So the panic over antibiotic resistance, that’s not actually happening despite all the news stories? Triple cocktail therapy for HIV doesn’t exist? The Choosing Wisely protocol for sinusitis doesn’t say the words “Overuse of antibiotics also encourages the growth of bacteria that can’t be controlled easily with drugs“?

          What’s ironic to me is that you are making such absolutist claims about what MDs ignore

          Idiot.

          1. Peter S says:

            So even though Peter S just said his fatigue was psychogenic and stress-based, he’s lying or mistaken?

            I could be wrong, but I base it on lots of years of looking for “physical” explanations for my problems, a huge sum of money invested in (wrong word choice, I should say wasted on) CAM tests and treatments and hopelessly conflicting diagnoses obviously driven by confirmation biases, and the fact that I do have extreme stress from a very disabled (autistic) now adult son.

            And don’t even get me started on the bogus diagnoses and promised cures he has received in the alternative world.

          2. whoa says:

            Mainstream MDs sometimes think about evolution, in some contexts, but in other contexts they seem to forget all about it.

            Sticking with the original Lyme treatment because the CDC recommends it and assuming the Lyme bacteria does not evolve is pretty stupid.

            But not nearly as stupid as you.

            1. WilliamLawrenceUtridge says:

              Mainstream MDs sometimes think about evolution, in some contexts, but in other contexts they seem to forget all about it.

              Evidence? Are you deliberately avoiding specific claims because you expect to be refuted almost immediately afterwards?

              Sticking with the original Lyme treatment because the CDC recommends it and assuming the Lyme bacteria does not evolve is pretty stupid.

              Seeing as the Borrelia burgdorferi bacteria is transmitted by tick bites, and seeing as infected humans who have undergone antibiotic treatment are unlikely to harbor further Borrelia burgdorferi, and seeing as the bacteria is extremely slow-growing in the first place, the development of antibiotic resistance seems unlikely.

              Also, who has said that Borrelia burgdorferi doesn’t evolve? All bacteria evolve, depending on the selection pressure. Given the specifics of the bacteria, antibiotic resistance is probably fairly inevitable in an extremely long time course, but over the short term it is LLMDs who are likely to cause resistance due to their use of extremely long-term, “pulsed” antibiotics. Of course, since most of their patients don’t have Lyme anyway, the point is moot – all of their risk is going to be non-Borrelia burgdorferi bacterial resistance.

              The CDC recommendation are evidence-based, and derived from highly structured research programs with well-defined populations, and as such were much more likely have actually had Lyme disease. Such structured research is always better, on a population basis, for making treatment decisions, than individual judgement. Ignoring the evidence, and special pleading for reasons to ignore it, is stupid.

              But not nearly as stupid as you.

              Wow, bazinga! You sure got me there, what with my appreciation of the general scientific approach to medicine and middling-understanding of how the mind can deceive. I also love the creativity and deep thought, the elegant weaving together of metaphor and alliteration, in your rebuttal.

              Oh, hold on, you did none of those things. You merely called me stupid after a series of vague platitudes that made no specific claims or predictions.

              Well good for you.

          3. Borrelia says:

            The panic over the overuse of antibiotics is creating distractions, not solutions to the problem. An entirely new argument can be had over the definition of “overuse.” If antibiotic treatment creates a quality of life significant enough that a person would choose to continue taking antibiotics for several months to years, then I think it’s fair to say they probably are receiving some physical benefit, particularly since they are not a highly sought after commodity for drug addicts and abusers of medications. The side affects are enough to make most people quit them if they receive no benefit. If we want to discuss overuse of antibiotics, we should start by causing the least harm and remove them from less debilitating and benign conditions. We could begin by discussing whether our cattle and farm animals receive more antibiotic than is necessary. Antibiotics were approved for use in farm animals and food in the last 40 years, yet humans and livestock have survived for thousands of years before this. If anything, antibiotics have allowed farmers to become mass producers rather than taking the care they once did to keep smaller numbers of livestock healthy without the need for frequent antibiotic use.

            Secondly, raising a panic over the overuse of antibiotics has a tendency to keep us complacent in medicine rather than inspiring us to find new and better treatments. Bacteria will keep evolving and like it or not our antibiotics today will be useless against these bacteria in the future no matter what we do. The use of antibiotics is one variable in the game. Our focus should be first and foremost on staying ahead of the game. Reducing the overuse should be supportive not foremost. Before we decide — without good evidence — that Lyme disease patients do not need long-term antibiotic treatment, we should be removing antibiotic use from treatments like acne. Last I checked, acne was not physically debilitating or life threatening, though I could find an argument mentally and cosmetically for the need in some cases. The argument used by camps opposed to long-term antibiotic use in Lyme treatment is being used not because they are truly afraid of superbugs. They are using fear to win votes for their currently held opinions. True concern over the overuse of antibiotics in this country would not focus on Lyme disease. True concern would focus on the plethora of seemingly benign conditions for which antibiotics are being prescribed daily. If we’re going to raise an all-out panic, let’s get rid of the over-the-counter Neosporin which has been shown to promote MRSA. Let’s remove the over-the-counter antibiotics which anyone can purchase at IFA. Let’s study the positive ingredients in Pepto Bismol and Manuka Honey.

            As far as sinusitis goes, how about those patients do everyone a favor and use the techniques available that help prevent infection in the first place. I’m sure I can find several more ways to reduce antibiotic use without threatening the lives of Lyme disease patients. Let’s stop stealing a wheel chair from a man with no legs to give to a guy who is lazy. Lyme disease treatments are an atom in the antibiotic universe. Antibiotic resistance when used to refuse treatment to Lyme patients is simply an argument to sell an argument and that’s it. Logically, it would not be a first step if they truly wanted to decrease antibiotic resistance, so you ought to question why some continue to throw that into the Lyme controversy.

            Equal weight has to be given to patients who are like Peter S. and to patients who believe their symptoms to be from an illness or condition. Both statements by both people are purely subjective, so neither of their opinions about their symptoms should supercede the other. I believe both can be right.

            1. WilliamLawrenceUtridge says:

              If antibiotic treatment creates a quality of life significant enough that a person would choose to continue taking antibiotics for several months to years, then I think it’s fair to say they probably are receiving some physical benefit, particularly since they are not a highly sought after commodity for drug addicts and abusers of medications.

              What if they get the same benefit from a medication that doesn’t lead to antibiotic-resistant bacteria colonising them and spreading?

              What if they get the same benefit from a placebo, which multiple clinical trials have now shown?

              Should we give them antibiotics, which can be dangerous, or should we give them a placebo, which is patronizing, or neither?

              We could begin by discussing whether our cattle and farm animals receive more antibiotic than is necessary. Antibiotics were approved for use in farm animals and food in the last 40 years, yet humans and livestock have survived for thousands of years before this. If anything, antibiotics have allowed farmers to become mass producers rather than taking the care they once did to keep smaller numbers of livestock healthy without the need for frequent antibiotic use.

              There is much debate over the use of antibiotics in farm animals, but the idea that antibiotics are acting solely to influence bacteria is false. They have other effects on pigs and cows. Even if bacteria are completely immune to these antibiotics, the animals still grow faster and will still be used.

              Bacteria will keep evolving and like it or not our antibiotics today will be useless against these bacteria in the future no matter what we do. The use of antibiotics is one variable in the game. Our focus should be first and foremost on staying ahead of the game.

              Brilliant idea. How? This statement is about as useful as saying we should reduce crime.

              Before we decide — without good evidence — that Lyme disease patients do not need long-term antibiotic treatment, we should be removing antibiotic use from treatments like acne.

              Two points:

              1) There is pretty good evidence that CLD patients don’t need long-term antibiotics

              2) Unlike treating CLD, antibiotics are actually effective at treating acne; I’m far more in favor of solving a real if minor problem than in endangering people with something that isn’t a solution.

              Last I checked, acne was not physically debilitating or life threatening

              Neither is chronic Lyme disease, unless you get an antibiotic-resistant bacteria colonising your central line, the one you used to give ineffective pulsed-dose long-term antibiotics.

              Let’s stop stealing a wheel chair from a man with no legs to give to a guy who is lazy.

              This comment kinda makes you a dick, and insults people who could genuinely benefit from a treatment at the expense of not helping someone who couldn’t.

              Equal weight has to be given to patients who are like Peter S. and to patients who believe their symptoms to be from an illness or condition.

              Why? Should equal weight be given to people who think their symptoms are caused by alien abductions? Or chemtrails? Or the CIA broadcasting thoughts directly into their brain? I’ll just point out that a patient believing their illness is caused by something isn’t the same thing as it actually being caused by something.

              1. Borrelia says:

                I said: “Equal weight has to be given to patients who are like Peter S. and to patients who believe their symptoms to be from an illness or condition. ”

                You said: “Why? Should equal weight be given to people who think their symptoms are caused by alien abductions? Or chemtrails? Or the CIA broadcasting thoughts directly into their brain? I’ll just point out that a patient believing their illness is caused by something isn’t the same thing as it actually being caused by something.”

                You automatically decided that someone complaining of certain symptoms would claim to have been abducted by aliens or hurt by chem trails? Perhaps you need the mental evaluation. That’s quite a jump to make. And if someone thinks the CIA is broadcasting messages to them, then certainly you would suspect schizophrenia which is a real disease of the brain and deserves as much treatment and respect as a heart attack. The fact that you have decided that every Lyme patient fits into one of these pre-conceived slots of yours, shows your bias and prejudice to begin with and would make you a terrible physician.

                You have serious issues with theoretical reasoning. You equate someone saying, “I was abducted by aliens,” to someone who says, “I have joint pains, muscle aches, an EM rash, flu-like symptoms and every time I’m on antibiotics I feel better. Every time I’m off antibiotics I feel worse.”

                You actually find it rational to equate those instances?

                That’s irrational. I’m starting to wonder who needs the mental evaluation here. When a patient comes into your office with symptoms complaining of something you can’t properly diagnose, it is just as likely that you are incapable of properly diagnosing as it is that they are lying or suffering from a mental issue. Until you are capable of proving they have a mental issue — which in many unclear cases, you are not qualified to do because you aren’t a psychiatrist — or that they are lying, you are not qualified to rule them crazy. Because something is subjective does not make it inaccurate. It makes your job harder.

                Pardon me if I dare say that acne is not as debilitating as Lyme. You apparently do not read much about neuroborreliosis and other Lyme issues caused by late-stage Lyme — you know, the kind you miss because you were testing for alien abduction. It’s egotistical to assume that it is always the patient that is wrong, particularly when they aren’t complaining of alien probings or some other whack story you seem to think they all contrive.

                It’s just an ego trip you’ve given yourself. Sometimes it is because YOU ARE WRONG. If you were qualified to diagnose and treat everything, then we could assume you did “obsess” over everything. If learning everything you can about a particular subject is obsessing, then I am obsessed, much like those Olympic athletes who seemingly obsess over a sport. If obsession brings knowledge and better treatments and diagnosis, then you ought to aspire to become obsessed.

                It appears your obsessive issues are about denial and laziness.

              2. WilliamLawrenceUtridge says:

                You automatically decided that someone complaining of certain symptoms would claim to have been abducted by aliens or hurt by chem trails?

                Nope, my point is that people can claim to be injured or harmed by things that didn’t actually injure or harm them, and Lyme ticks can be one such thing. The evidence supporting CLD and in particular long-term antibiotics as a form of treatment is suboptimal, expressed politely. My overall point is that certainty is unwarranted.

                You actually find it rational to equate those instances?

                Yes, I do. Suffering is real, I have no doubt about that. Etiology is debatable, and etiology can include somatization. And further – to denigrate mental suffering expressed physically as “less worthy” than suffering caused by a physical means is one of the reasons people somatize. Think about it.

                it is just as likely that you are incapable of properly diagnosing as it is that they are lying or suffering from a mental issue.

                Not at all; your statement contains the idea that all diagnostics occur within a vacuum or void; they do not. When someone presents with none of the tests or symptoms associated with Lyme disease and claims they have chronic Lyme infection, that assumption is very open to question.

                Pardon me if I dare say that acne is not as debilitating as Lyme.

                It’s not, but acne is treatable through antibioitics. Chronic Lyme disease is not. Actual Lyme disease can and should be treated with antibiotics. It is chronic Lyme disease that is open to question. I don’t claim Lyme disease doesn’t exist.

                It’s egotistical to assume that it is always the patient that is wrong

                I don’t have patients, I am not a doctor.

                If learning everything you can about a particular subject is obsessing, then I am obsessed

                Sure, and it’s your life – obsess away. But yoru speculations do not occur in a vacuum, and there are genuine experts paid to research and think about the topic, and they apparently think quite differently about the proper treatment of Lyme disease.

                If obsession brings knowledge and better treatments and diagnosis, then you ought to aspire to become obsessed.

                Sure, but if you’re obsessing about the wrong thing, or something that is manifestly nonexistent, or if you are claiming to make accurate statements when the reality is quite different, then your obsession helps nobody and takes time away from more fruitful tasks.

                I’ll also point out that railing about how great your science is in a skeptical blog’s comments section rather than a peer reviewed journal is counterproductive and a pretty massive waste of time. Unless you just enjoy arguing.

        2. Windriven says:

          “One thing I consider very ironic is that mainstream MDs seem to ignore the fact that pathogens, like all organisms, are always evolving.”

          Are you drunk or stupid? MDs are acutely aware of the rapid adaptations of pathogens to medications, probably more acutely aware than any other segment of the population.

          You simply do not want to accept that some people have psychosomatic illnesses.

          1. whoa says:

            Then why insist that if a Lyme disease patient is not cured by 2 weeks of the standard treatment, they must not have Lyme disease? They have to wait until the CDC and the FDA tell them that bacteria can evolve?

            And I know it is possible to have psychosomatic diseases. It is also possible to call everything psychosomatic that you fail to understand.

            A patient has symptoms that don’t go away after 2 weeks of Doxycycline, therefore the symptoms are psychosomatic.

            That is the brainless method, just mindlessly obey the CDC.

            I’m sure plenty of Lymelits are quacks, but some are probably good doctors who are just too smart to mindlessly follow the authorities.

            1. weing says:

              “A patient has symptoms that don’t go away after 2 weeks of Doxycycline, therefore the symptoms are psychosomatic.”
              What symptoms? Psychosomatic symptoms will not go away after a couple of weeks of doxycycline. Lyme arthritis is typically treated for at least a month anyway.

              1. Harriet Hall says:

                If a patient has symptoms that don’t go away after two weeks of antibiotics, one plausible explanation is that the symptoms are not due to Lyme disease or to anything else that would respond to antibiotics.

            2. WilliamLawrenceUtridge says:

              Then why insist that if a Lyme disease patient is not cured by 2 weeks of the standard treatment, they must not have Lyme disease? They have to wait until the CDC and the FDA tell them that bacteria can evolve?

              Post-Lyme syndrome is recognized (see here) as a post-infective sequelae, not as an ongoing cryptic infection. And many who claim to have chronic “Lyme” disease lack the specific symptoms and objective test results to show that they ever had Lyme in the first place. And the specific bacteria is extremely slow-growing in humans, so between antibiotics and the immune response, resistance is unlikely. Further, that evolution would not eliminate the traces of infection in the first place, the traces that are missing in so many chronic “Lyme” disease patients.

              And I know it is possible to have psychosomatic diseases. It is also possible to call everything psychosomatic that you fail to understand.

              It’s also possible to recognize the limitations of medicine and a current situation, and as such just default to watchful waiting rather than running to a nutjob who is willing to tell you nearly anything just for some false assurance.

              A patient has symptoms that don’t go away after 2 weeks of Doxycycline, therefore the symptoms are psychosomatic.

              Yeah, straw man there buddy.

              I’m sure plenty of Lymelits are quacks, but some are probably good doctors who are just too smart to mindlessly follow the authorities.

              I don’t think being “too smart” is really a factor here. To become an expert in something so esoteric as Lyme disease one would have to be an infectious disease specialist with a focus on Lyme disease and an active record of researching and publishing. These doctors don’t, at least not anything resembling real research. Case reports, allegations, smears and the like – no actual evidence in well-controlled tests.

            3. JD says:

              A patient has symptoms that don’t go away after 2 weeks of Doxycycline, therefore the symptoms are psychosomatic.

              You have set up a pretty clear straw man here, insinuating that all physicians immediately resort to declaring a psychosomatic illness, when other causes must be ruled out first.

              But, there is another, less obvious, straw man argument that permeates this debate. That is the idea that all physicians look down on and marginalize patients with somatoform disorders etc. I am not convinced that patients are mistreated in this way, but they certainly perceive that this is the case, often reporting that they were dismissed as nutjobs. This report very likely comes after seeking care from a LLMD, though, who is friendly, understanding, and sure-handed with a diagnosis of Lyme disease that the ID specialist was just to callous and dismissive to catch.

              I think there is the usual CAM psychology at play here and I haven’t come up with a solid recommendation for how to fix this. Would it make sense to teach ID specialists to be more understanding with somatoform patients? Or to use motivational language like “your test for Lyme disease was negative, but we will do all that we can to get to the bottom of this?” I just don’t think that either of those options would address the underlying problem, that these patients are often lured astray by a shifty physician with an effective sales pitch.

              The saddest part of this debate is that there are some reasonable problems that could be addressed or advocated for. How to best treat PTLDS and development of a more accurate test come to mind. But these are left out of the conversation for a clear focus on long term antibiotic treatment.

              That is the brainless method, just mindlessly obey the CDC.

              No, the brainless method is to put someone on antibiotic treatment without a clear reason to do so, which the CDC method is attempting to prevent. Completely ignoring the antibiotic resistance argument, which is a hard sell, the pretty terrible side effects of these drugs are well known and get worse with longer treatment. I mean some of these patients get a port, while being treated long term, which spells disaster in terms of resistant infections. Add this on top of the gastrointestinal effects, allergic reactions, cardiac conduction problems and even blood sugar fluctuations that have been associated with antibiotics.

              Finally, let me head off a counter-argument that I hear all of the time, before it is offered. If you compare treating acne and treating suspected Lyme disease with long-term antibiotics, only one of these has proven benefits, is likely treating an actual bacterial disease, and is likely to respond. And that is not “chronic Lyme disease.”

          2. Borrelia says:

            I disagree with you Wriven. Physicians may be aware that bacteria evolve, but the devil is in the details. Bacteria do not evolve at the same rate. Borrelia Burgdorferi studies have shown that the bacteria is “rapidly evolving.” One study found a large portion of the bacterial genome which appeared to have no function whatsoever during their study. The implication of this finding is that the bacteria adapted to the environment. In the format that the bacteria was being studied, the bacteria essentially shut down a large portion of itself because it wasn’t helpful to it’s survival. It’s an extremely rapid adaptation technique. This also means that the immune system and antibiotics will struggle to keep up with it’s ability to mutate at such a rapid pace. This is the reason we do not have a cure for the common cold or flu. The viruses mutate so rapidly that science cannot keep up with them. They are able to produce flu vaccines based on the previous year’s strain and because it shares some components with the new strains, it does help provide protection. This is why a new flue vaccine comes out frequently. Rapidly evolving bacteria and viruses are by nature difficult to understand. Once a scientist/researcher begins to understand their function, the virus or bacteria has already mutated and the research has to begin again. Because we also know that each person has a specific genetic code different from anyone else, we know that bacteria can adapt differently in one person versus another, as in the mouse study I quoted in one of my replies below. To assume that most physicians have a good understanding of the evolution of bacteria is a very general statement, but not one that implies a good knowledge on the part of each physician in regards to how each bacteria functions. The functioning of each bacteria is of monumental importance in knowing how to properly treat it. Research into Borrelia Burgdorferi is still so novice that it would be impossible for a physician to have a good handle on it if the researchers and scientists themselves are still chasing the tail of the kite.

            1. WilliamLawrenceUtridge says:

              This is the reason we do not have a cure for the common cold or flu.

              The reason we don’t have a cure for the common cold or flu is because these are viral infections; interfering with viral replication is much harder than interering with bacterial.

              But overall – while your theoretical argument might have a point, I assume you’re using it to support the idea that long-term antibiotic therapy should be a treatment option for CLD (based on another comment of yours). The problem with this is that the best-quality test of long-term antibiotic use for CLD has shown clinically negative results. So apparently – even if you are right and it’s due to antibiotic resistance, the solution is not long-term antibiotic therapy.

              1. Pierre Carles (PhD) says:

                William, you state:

                “The problem with this is that the best-quality test of long-term antibiotic use for CLD has shown clinically negative results.”

                This statement, which I read over and over again in this thread, seems to be largely exaggerated, and taken as an absolute truth when facts are, really, inconclusive. It seems rather that nobody at this point can reach such an indisputable conclusion, as was demonstrated through the statistical analysis by DeLong, Aug. 19, 2012, Contemporary Clinical Trials (from Brown University).

                Besides, you claimed earlier in this thread that there was “no such thing as CLD, and no reason for it to be”.
                Here, you seem to dispose rather easily of about 20 years of veterinary research, which has shown that CLD does exist in many mammal species and is, in fact, rather commonplace in livestock. Besides, recent work by Embers et al., PLoS One, 7(1):e29914 (2012) has demonstrated the persistence of Bb infection after antibiotic treatment in primates.
                Granted, identification of positive cases in animal model does not ascertain their existence among humans, but it still makes things a long way from a mere “CLD has no reason to be” debunking argument.

                Now, let us add two and two and summarize the known facts:
                1. The studies on which CDC based its recommendation are claimed to be inconclusive by a team of bio-statisticians from Brown (2012)
                2. CLD has been demonstrated in primates, and in as many as 20 studies on several other animal models (horses, dogs, mice, …), suggesting that the existence of a human form is a reasonable assumption to start with.

                A “healthy skeptic”-type analysis of these two facts (I insist on the word FACTS) should lead anyone trained in scientific research to conclude that the human form of CLD remains an untested possibility, and that the CDC recommendations are too weakly supported by data to be as indisputable as is generally claimed.

    2. Pierre Carles (PhD) says:

      Seldom have I read such a balanced and thorough description of the situation. Thank you for taking the time to write this detailed answer, which summarizes the most significant elements in this debate.
      As a researcher in Physics myself, I keep being surprised at the lack of distance and, to say the least, humility of so many MDs, who follow the prescriptions of the CDC like a doxa, even when they are based on what comes down to inconclusive meta-analysis (see for instance DeLong, Aug. 19, 2012, in Contemporary Clinical Trials).
      The complexity of even the simplest biological process should, on the contrary, drive people to being overly cautious when making statements.

      The social dynamics in medical research must definitely be an interesting sociological research subject !
      Thank you again.

  2. Ymata says:

    I am a little confused about what the WB involves. Is a sample of B. burgdorfori-specific proteins run on the SDS-PAGE gel, and then patient serum containing antibodies used to probe the membrane? How can a WB differentiate between IgG and IgM, as the “Lyme community” says it can?

    1. rork says:

      I don’t see this assay done personally, but that sounds like what I’d do. The last step you left out is that you likely need to follow with a mouse (or such) anti-human-IgG, (or anti-IgM) to make the bands that had human IgG (or IgM) stick to the blot “light up”. Whether you check for IgG or M likely depends on how long ago you think the infection may have started (or just try both).

      1. Ymata says:

        Oh, so the secondary antibody used can detect IgG vs. IgM. Thanks for the information. I do WBs practically all day, but instead using known antibodies to check for unknown proteins. The way the Lyme people usually talk about the WB, like “The 31kDa band is specific for B. burgdorfori” just makes no sense at all for the type of test you’d have to do to check for an immune response in patients.

  3. rork says:

    Dot blot (maybe with weak washings) sounds like a money maker. “We have better ways of helping you test positive.”

  4. Mike says:

    Thank you for this article. I’ve seen stories like from this lady from LymeActionPA where multiple people in a family are diagnosed with chronic lyme. It’s hard to know what to think when they say they have tests that confirm their diagnosis.

    And now it looks like Pennsylvania has sadly passed a bill “establishing a task force on Lyme disease and related maladies.” It looks like the task force will spend state money to educate the public on chronic lyme and will be stacked with Lyme-literati.

  5. Thurber says:

    I had a co-worker who was treated for lyme disease. After a course of antibiotics, he said he still felt terrible, and so he hooked up with an alternative healer who sold him a machine. He thinks sound waves will destroy the disease. I feel sorry for him. I tried to explain that these machines are useless. His mind is made up.

    I know this is off topic, but I’m curious about your opinion of pressurized oxygen for returning military with PTSD:

    http://wnyt.com/article/stories/S3506807.shtml?cat=300

    I remember years ago reading that cases of “dementia praecox” in the 1930s were sometimes treated with oxygen therapy. I don’t know anything about it, just curious what others have to say.

    1. WilliamLawrenceUtridge says:

      I found one clinical trial. There were only 16 subjects, and they were given a fuckton of tests (close to 20, depending on how you count). There was no control group, which basically invalidates the whole study (unless you consider it just a phase I trial for safety – but why bother when HBOT is already used for other indications, and why bother with all those functional tests?). My understanding is that PTSD is a horrific psychological condition with some physical sequelae (hormone level changes I think), I’m curious how HBOT could improve a predominantly psychological condition.

      HBOT is also used as a regular quack treatment for autism, to “cure” your “damaged” child and to get your “real” child back (fuck you everyone who thinks this about your kid with autism), making it an already suspect and oversold CAM intervention. The lead author is Paul Harch, who owns a company selling HBOT treatments. These guys are skeptical, and I can see why the more I read about Harch. Proponents like to pop into comments sections and promote themselves.

      I smell bullshit, particularly given Harch’s intense self-promotion, dearth of publications, the enormous number of languages in which he offers services (real medical treatments proven effective are adopted widely throughout the world because of the evidence – they do not need to be offered through a single multilingual website) and the general lack of good evidence.

      Which is unfortunate, because veterans are already getting horrible treatment after discharge.

      1. WilliamLawrenceUtridge says:

        Ugh, I’d never ready anything by Harch. Upon reviewing the AITSE article I link to above, it’s obvious he’s a hideous, unethical quack.

      2. Sullivanthepoop says:

        I was diagnosed with PTSD, but it turned out that it was actually a hormone problem. I didn’t realize that there are hormone problems associated with PTSD.

        1. WilliamLawrenceUtridge says:

          My statement about hormones is borderline criminally uninformed, that’s just a vague factoid I can’t attribute to any source or person so there’s no guarantee it’s correct.

          There are some researchers who think PTSD is basically a nonsense diagnosis that is totally unnecessary and causes more harm than good – kinda like DID/MPD was back in the 80s. Never ended up reading the book.

  6. George Locke says:

    I enjoyed the article, but, um, paragraphs plz…

  7. goodnightirene says:

    A few years ago I was back in my Pacific NW hometown for about a year and I kept seeing this batty woman walking around with a portable IV drip. Eventually I was informed (in a very straightforward, no-doubt-about-it way) that the poor soul was suffering from “chronic Lyme disease” and was being treated with IV antibiotics. The town is filled with alties, MD’s, naturopaths, gurus, and more.

    For the record, it’s not much better here in the Midwest where nearly all of my neighbors who I see at gatherings are seeing some kind of altie practitioner (though most see regular docs as well). Chiros and acupuncture top the list, both of which are seen as totally equal to any MD to these people–they do not even think of them as alternative, and they believe that these modalities are proven to be effective. These aren’t granola hippies, but regular people who hold or held (many are retired) skilled manufacturing or mid-management type of jobs.

    At least no one is (yet) walking around with an IV drip!

  8. Peter S says:

    Dr. Savely Yurkovsky in NY claims he can cure Lyme, autism, and everything else that ails us with sublingual drops of water onto which he has imprinted (as I understand it) the “energetic signatures” of the toxins he has identified via bioresonance testing that are compromising the immune system. Usually, mercury. Once these toxins are removed or reduced via treatment with these energized drops of water (I’m a little unclear on how that is supposed to happen but it has something to do with vibration and physics and energy fields), the body will fight off the infection on its own — or something like that? And naturally he has testimonials from patients.

    http://www.yurkovsky.com/lyme-disease-coinfections-and-morgellons-disease.pdf

    1. Windriven says:

      “sublingual drops of water onto which he has imprinted (as I understand it) the “energetic signatures” of the toxins ”

      Isn’t this just homeopathy repackaged?

      1. KayMarie says:

        *googles*

        Maybe, I found some links for digital homeopathy. No risk as no molecules are involved or something.

        Great, now my brain is twitching.

      2. Peter S says:

        As I understand it subject to my limitations, it has elements of homeopathy, but it’s very different.

        This appears to be a more detailed explanation, and I must admit it’s beyond me. For example, I do not understand how it is possible to “imprint” water with the “energetic signature” of a substance.

        http://gregwastl.files.wordpress.com/2008/02/fctarticle.pdf

        1. Windriven says:

          I can’t address the biology, that isn’t my field. But I can address the physics.

          ““imprint” water with the “energetic signature” of a substance”

          is absolute raving bullcrap. It isn’t even so much the “imprinting” as the retention of the imprint. One can, for instance, impose a field and make water molecules align based on their dipole moment but as soon as that field is removed (assuming STP) the molecules will quickly resume more or less random orientation.

        2. WilliamLawrenceUtridge says:

          I do not understand how it is possible to “imprint” water with the “energetic signature” of a substance.

          That’s because you can’t :)

          1. Peter S says:

            And yet, he has cured people with autism, or so he says. Which is very upsetting to me as the parent of a very disabled autistic adult, because it’s always difficult for me anyhow to know when one owes it to one’s child to pursue something and when to feel comfortable calling BS on someone who claims to have a cure.

            1. Windriven says:

              Peter, there is no cure for autism. Some of the symptoms can be managed to one degree or another and that is about it.

              “One thing that is important to know up front: There is no cure for autism. So, products or treatments claiming to “cure” autism do not work as claimed. The same is true of many products claiming to “treat” autism. Some may carry significant health risks.”

              http://www.fda.gov/forconsumers/consumerupdates/ucm394757.htm

              Watch the medical literature. Follow this site. Dramatic improvements that are real and reproducible will be announced in these venues, not the websites of alt-med types.

              Best thoughts for you and your son.

              1. Peter S says:

                Thank you. I know all this at some level, but there are very powerful messages out there by authoritative figures that can be very hard to resist when it is impossible for one to be objective due to one’s emotions. I wish regulators would do more against doctors such as Klinghardt, Yurkovsky, Yasko (well not a real doctor, but a very rich not real doctor for all her woo) and undoubtedly a host of others who are making these fraudulent claims that they can cure autism.

              2. WilliamLawrenceUtridge says:

                I know all this at some level, but there are very powerful messages out there by authoritative figures that can be very hard to resist when it is impossible for one to be objective due to one’s emotions.

                Indeed, one of the worst things about these quacks, aside from the direct harms and deaths they cause, is the endless selling of false hope to patients. It’s cruel, and it draws resources away from what could actually help – even if that’s merely emotional coping against the realities one faces. One need look no further than Dorothy Spourdalakis to see this.

                Words can’t help but I wish they would. My respect for having the strength to recognize your situation for what it is and deal with it as you find it, rather than continuously pursuing false dreams. It’s clearly a hard but honest road.

            2. WilliamLawrenceUtridge says:

              The idea of “curing” someone with autism seems generally suspect – it’s not a bacterial or viral infection, it’s not a parasitic disease, it appears to be a basic qualitative difference in some aspects of neurological functioning. You can improve communication, you can teach them skills that address specific skill deficits, but the idea that you can “cure” them with a pill is cruel false hope, doesn’t align with the facts of autism, and is quite insulting to many with autism.

              1. Peter S says:

                I don’t disagree, but if you were to post that on one of the “biomed” autism forums — with scores of parents diligently doing their weekly urine tests and sending them to “Dr.” Amy to see how many more metals have “cleared”and to be told what next $1000 batch of supplements they need to buy — and countless variations of the same nonsense — you would be vilified.

              2. WilliamLawrenceUtridge says:

                Yep, which is why I would never, ever go to one.

    2. Newcoaster-MD says:

      Sorry, I thought at first you were making a joke. You appear to be serious?
      It burns..the stupid….it burns.

      1. WilliamLawrenceUtridge says:

        He’s seriously pointing out how stupid it is.

  9. Pharmacist-in-Exile says:

    Here in Scandinavia we are currently plagued by a “live whole blood microscopy” sure diagnosis for “chronic” Lyme and “co-infections” – usually performed by non-medically (or even microscopy) trained individuals. I am just curious – do you have the same problem on the other side of the pond or is it more of immunology and tech-talk (like WB differences)?

    1. KayMarie says:

      We have live microscopy over here in the US as well. One of my woo friends was telling me how much I’d love coming into the practice since the live microscopy was so sciencey and I was all sciency too.

    2. WilliamLawrenceUtridge says:

      I think “live whole blood microscopy” is rather old hat in North America. Quackwatch has an article:

      http://www.quackwatch.com/01QuackeryRelatedTopics/Tests/livecell.html

  10. Kiiri says:

    Blech. I used to live in AZ (which has no endemic Lyme disease) but we had a “Lymlit” clinic that was gleefully diagnosing everyone walking through the door with Lyme. They would then report the cases to the PH department where I worked where we would then have to investigate. It became such a horrible chore because if the lab was one of the “Lymlit” labs (all out of state) we could be nearly 100% certain it wasn’t a true case. None of the cases this doctor (a real MD we looked him up) diagnosed had ever had the recommended tests, almost all were residents of AZ with no outside of state travel (and no exposure to ticks) and all were on long-term often IV antibiotics. It is enough to make you cry thinking about these people basically running around breeding resistant bugs in their own bodies and for some risking serious infections (C. diff is no joke). Patients wouldn’t even listen to our public health nurses when they explained there was no Lyme disease endemic in AZ. We would routinely get a couple of calls/letters/emails per year begging us to address the “severe problem of undiagnosed chronic Lyme disease in the community”. It is truly sad. These people are charlatans preying on the vulnerable and worse using real medicine that isn’t going to help anyone but causes real harm.

    1. Peter S says:

      From my personal experience, a problem with at least the “lymelit” doctor I saw was that he had an answer for everything to support his biased diagnosis.

      ME: But I was never bitten by a tick or had a rash.
      HIM: That’s irrelevant, most people don’t remember.
      ME: But I don’t really have three of the five hallmark symptoms, even according to a leading lymelit doctor.
      HIM: Lyme can present with any combination of symptoms, so that doesn’t rule it out.
      ME: But pain and fatigue can be due to a thousand causes including anxiety.
      HIM: And also due to Lyme.
      ME: But my standard labs are negative and even my alternative lab is at best weakly suggestive of past exposure not ongoing infection.
      H(M: Any positive test is strongly suggestive of Lyme in the presence of symptoms.

      and so on

      1. WilliamLawrenceUtridge says:

        Lyme can present with any combination of symptoms, so that doesn’t rule it out.

        …and that doctor just eliminated falsifiability, the most crucial aspect of any hypothesis. He’s basically saying he can diagnose anything as Lyme disease (and presumably does).

        1. Peter S says:

          My impression was that he had a very strong predisposition to do so, that was cemented by an allegedly positive test result.

          But I have encountered many physicians in different disciplines who have a hammer and basically think everything is a nail. It’s a problem a patient definitely needs to be aware of.

          1. KayMarie says:

            Well there is something to if you see a surgeon and a radiation oncologist for a tumor you are probably going to get the surgical recommendations from the surgeon and the radiation recommendation from the radiation oncologist.

            Usually in Medical World the doctors won’t be upset you saw the other specialist and will try to help you make the decision by discussing the risks and benefits of each approach and seeing what best aligns with the patients goals and preferences. (for instance a more aggressive surgical approach to reduce the risk of relapse vs a more conservative approach that preserves form and function)

            Unfortunately some doctors (and a lot of alternative practitioners) really try to discourage talking to people with other hammers. As a general rule if the person discourages you from consulting with others or will stop treating you because of seeing other doctors it is often a sign they are well into some kind of woo.

            1. Peter S says:

              I can understand that treatment options can be a judgment call where bias understandably plays a role, but it seems different to me when doctors can’t even agree on a diagnosis and their varying diagnoses seem to be the product of bias. Not to take this too far afield, as a personal example, I have had rather severe knee pain for well over a year, with all the imaging any physician could possibly ask for. One doctor whose specialty is arthroscopy says I should have an arthroscopy as my meniscus, while not exactly torn, could use some cleaning up. A second doctor whose specialty is cartilage replacement says I definitely need a particular cartilage replacement — that opinion was rendered with NO physical exam. A third doctor says that the findings on my MRI are essentially trivial, age-normal and not causative of my pain, and that it would be a huge mistake to have surgery. A fourth says I need an aggressive regime of shots to treat my supposed osteoarthritis. These are all, by the way, very highly rated doctors. My PCP tells me it’s up to me to filter all this. What’s a person supposed to do?

              1. Windriven says:

                “My PCP tells me it’s up to me to filter all this. What’s a person supposed to do?”

                Get a new PCP. The information you say you have gotten is beyond a normal spread of proposed treatments. A PCP who is unable to help you sort this out is useless.

              2. Andrey Pavlov says:

                Windriven may be right that it is time to find a new PCP. But I would first try simply asking him/her to help you synthesize and organize the information given you by the specialists.

                I tell my patients it is my job to be the expert in a field they have not studied and tell them (to the best of my ability) what the reality of the science and evidence on a topic is. It is your role as the patient to then decide which option is the best for you.

                Perhaps your PCP meant it in that way – that you are the one that needs to decide which option is the best one for you. But it should be clear that the PCP should be helping guide you and answer questions (and should, for example, be able to tell you that the evidence does not support shaving the meniscus for knee pain). As the primary team doctor I call in consults on my patients. But at the end of the day it is my job to pull all those together into a summary to explain to my patient and his/her family what all of it means in context.

                So you could try just plainly asking him/her to do exactly that and tell you his/her evidence based opinion on the options presented. (S)he may not know the literature well enough, but that should prompt him/her to look it up. It is always important to stay as up to date on the literature as possible and having a patient prompt some reading on a specific topic is, IMHO, plenty good enough reason to do it. We can never expect to be fully caught up on everything, but it seems that going bit by bit and using patient inquiry as the motivator on which bits to catch up on is a perfectly reasonable way to go about it.

                And if (s)he still just flat out turfs it and won’t give you anything further, then I agree that may well be time for a new PCP.

  11. jsterritt says:

    It seems to me that those who argue that sufferers of “chronic” Lyme are marginalized by “regular” doctors and mainstream healthcare have it backward. I have never encountered anyone more dismissive of a patient’s symptoms and suffering than so-called “Lyme literate” providers. Every symptom and complaint is rolled-up and dismissed under the umbrella catch-all of “chronic Lyme.” They have all the answers — the only answer: “chronic Lyme.” After months or years of failure to respond to treatment, these “literate” providers remain steadfast in their one true cause: “chronic Lyme.” Rather than question their diagnosis and (failed) course of treatment, they view disappointing results as proof that they were right. The worse a patient fares, the better — a sure sign the diagnosis and treatment were correct (they call this “herxing”). The tests are negative? We’ll make up new tests, because chronic Lyme. Not getting better? Nonsense, just look at how sick you are, because herxing and chronic Lyme. An astonishing coincidence that every patient who comes through your doors happens to have the same diagnosis and treatment regimen? Of course not, because chronic Lyme.

    I have no doubt that the charlatans who are preying on suffering people with the sCAM of chronic Lyme disease believe they are acting in the best interests of their patients. But they are wrong. Their beliefs are informed by many biases and are impervious to new or better evidence. They are charlatans nonetheless.

  12. lilady says:

    Chronic Lyme Disease…right.

    For years, when I worked as a public health nurse at a County health department, I discussed Lyme disease with residents in my County. We were not in the epicenter of Lyme disease in my state (the mid Hudson River Valley), but our residents traveled to areas where Lyme disease was prevalent.

    I also investigated “suspect” case of Lyme disease, when hundreds of positive ELISA/positive Western Blot tests were reported from reputable reference labs. Were there actual cases of the disease that were not reported? Sure there were, when doctors made their diagnoses based on the erythema migrans rash, a history of a tick bite and travel to a Lyme disease-endemic area….doctors are notorious for not reporting such cases:

    http://www.webmd.com/arthritis/ss/slideshow-lyme-disease

    There were, however, some LLMDs who ordered ELISA tests for everyone who came through the door, without the confirmatory Western Blot test. Lyme disease ELISA tests have high sensitivity but low specificity and are virtually useless in the absence of specific symptoms.

    My all time “favorite” Lyme disease test is the LUAT (Lyme Urine Antigen Test) done by a “specialty laboratory” and the true test if your doctor is a Lyme Disease quack:

    http://www.niaid.nih.gov/topics/lymedisease/research/pages/diagnostics.aspx

    Dr. Snyder, I’m wondering if you saw many cases of 3rd degree heart block associated with Lyme disease infection, which required a temporary pacemaker. I only reported one case in a 19 year old young man who had a summer job working as a landscaper for his uncle. Poor kid, he also was diagnosed with Lyme disease meningitis. His mom and I became telephone buddies because she was so concerned about his treatment. He did fine on a 28 day course of IV Ceftriaxone.

    1. Sawyer says:

      Lyme disease ELISA tests have high sensitivity but low specificity and are virtually useless in the absence of specific symptoms.

      For all the headaches and blatant misinformation propagated by the Lyme-Literate community, this is one avenue where I think they could actually contribute to a better understanding of the disease. We’ve seen over and over again that even the most intelligent doctors don’t always grasp the concept of sensitivity and specificity, and it’s not totally inconceivable to me that those in leadership positions at the CDC occasionally make mistakes in this area. I hope we continue to see research on which combination of diagnostic tests give the minimum number of false positives and false negatives, and I’m sure there are a handful of people in the LLMD community that are striving for this as well. I just hope this small collection of doctors and scientists have the courage to tell the other 99% of the CLD crowd that they are incompetent morons and should get the hell out of the way.

  13. Laurenak says:

    Thank you for this great article :) I have fibromyalgia and am part of a fibro support group on Facebook which despite having many lovely people on it also has some woo fans. I’ve recently seen one member posting on nearly every persons post that her fibro is caused by ‘chronic Lyme disease’ and that everyone should get tested for it cause it’s the main cause of Fibro. I promptly dismissed her posts but as this support group attacts a lot of newly diagnosed people who are desperate to try anything, I decided to share this article to hopefully help those who haven’t received an excellent education on sCAMs from SBM as I have. Keep up the great work SBM :)

  14. whoa says:

    Harriet Hall says:

    July 19, 2014 at 7:29 pm

    “If a patient has symptoms that don’t go away after two weeks of antibiotics, one plausible explanation is that the symptoms are not due to Lyme disease or to anything else that would respond to antibiotics.”

    That is what the post was all about Harriet, the idea that anyone who is not cured by the standard treatment probably does not have Lyme disease.

    And the prevailing view here has been that if a patient was not cured by the standard Lyme treatment, their symptoms are likely to be psychosomatic.

    This view assumes the standard treatment is effective for all or most cases of Lyme. It ignores the possibility of multiple and evolving pathogens being transmitted by tick bites.

    When AIDS patients are not cured by anti-HIV drugs, you assume it’s because HIV evolves and becomes resistant.

    When Lyme patients are not cured by the standard antibiotic treatment for Lyme, you assume their symptoms are psychosomatic.

    1. weing says:

      “When Lyme patients are not cured by the standard antibiotic treatment for Lyme, you assume their symptoms are psychosomatic.”
      How the f*ck do you know that they had Lyme disease in the first place?

    2. Andrey Pavlov says:

      And the prevailing view here has been that if a patient was not cured by the standard Lyme treatment, their symptoms are likely to be psychosomatic.

      No, that is what you are trying to assert when nobody else here is. If a patient is not cured by the standard Lyme treatment – a treatment which has been validated numerous times and over decades – then the likelier explanation is that something else is likely the cause of their symptoms. That something could be psychosomatic, or contain a psychosomatic component, but it is not the only option as to what it could be. It is also not next on the differential diagnosis but is instead a diagnosis of exclusion after other more likely possibilities are worked up. Also very low on the list is a Lyme disease caused by resistant spirochetes that are also simultaneously undetectable by any of the validated methods for detecting B. burgdorferi.

      This view assumes the standard treatment is effective for all or most cases of Lyme. It ignores the possibility of multiple and evolving pathogens being transmitted by tick bites.

      Well, the first part is true. And for very good reason. It has been repeatedly demonstrated time and time again over decades. So yes, it is absolutely fracking reasonable to assume that standard treatment is indeed effective for at least almost all cases of Lyme. However, the second part is false – yet more of your own projection of things nobody has ever said here. It does not ignore that possibility. The difference is that we demand evidence that this is the case. You simply accept it as a given. Show us the evidence and you’ll get us all to agree. The problem is that it has been investigated and the evidence is lacking.

      And to pre-empt what you will most likely try and argue, no the absence of evidence is not the evidence of absence. Unless the evidence should be there. And in this case there should be evidence of resistant spirochetes and there should be evidence of spirochetes in the people afflicted with this condition. Both are lacking.

      So you are left to try and argue for the possibility of a small subset of the population having an infection that is simultaneously resistant in a manner yet to be described and mysteriously undetectable by any means by which we have successfully identified the spirochete before.

      The term for that is “special pleading.”

      When AIDS patients are not cured by anti-HIV drugs, you assume it’s because HIV evolves and becomes resistant

      First off, you don’t cure HIV. You manage it. Secondly, the reason that assumption is a fair one is because in those people we have detected the presence of HIV in the first place. You are trying to argue:

      “When an AIDS patient who has never had any documented HIV infection despite numerous tests fails anti-HIV drug treatment, you must assume it is because there is undetectable HIV that has developed resistance”

      Which, of course, is ludicrous.

      So your analogy is not just false it is completely wrong. You can’t even form cogent thoughts as to what you mean to say, but instead flail around erratically clutching to your magical chronic Lyme disease.

      1. Peter S says:

        (So you are left to try and argue for the possibility of a small subset of the population having an infection that is simultaneously resistant in a manner yet to be described and mysteriously undetectable by any means by which we have successfully identified the spirochete before. )

        There is an answer to the undetectable thing too, of course — the spirochetes hide in “biofilms.”

        http://goodbyelyme.com/free_articles/biofilm

        1. WilliamLawrenceUtridge says:

          If they’re undetectable and locked away in biofilms…wouldn’t they essentially be sequestered and thus cause no symptoms?

          1. Peter S says:

            Oh no, they’re sneaky bastards.

          2. Andrey Pavlov says:

            If they’re undetectable and locked away in biofilms…wouldn’t they essentially be sequestered and thus cause no symptoms?

            Well, not exactly. You can have biofilms on central lines or vegetations on heart valves that will only cause symptoms when parts of them flake off. In between it would be impossible to detect the bacteria. And many times even when symptomatic we just can’t capture them on blood cultures. But biopsies have a much higher yield.

            Either way, these phenomena are well described and we know how to notice it and treat it without empirical confirmation of bacteria. But we also do serial blood cultures to try and catch the bug if it is being resistant to treatment.

            To my knowledge, none of this has been successful in demonstrating chronic Lyme. Meaning that we’ve tried and failed to find evidence of such things happening in the case of Lyme.

            1. jsterritt says:

              It is one of the defining inconsistencies of CLD that sufferers have a particularly virulent and active infection that is at the same time so well-hidden (in biofilms, etc) as to be undetectable. It defies reason and logic and has no precedent in biology or medical science.

        2. JD says:

          I would argue that what allows ***untreated*** borrelia to persist for many years has to do with several other properties, not related to the potential for biofilm formation. Excuse my dated references, these come from some of my older bacterial pathogenesis notes. As far as I know, these still represent viable mechanisms, but I admittedly haven’t seen much valid work on this lately, as it now seems to have a “chronic Lyme Disease” bent.

          1) GENETIC VARIATION: borrelia has a system to produce many variants of a surface exposed lipoprotein. Specifically, through the re-ordering of vls genetic cassettes, millions of different vlsE lipoproteins can be produced. http://www.ncbi.nlm.nih.gov/pubmed/9108482

          2) DIFFERENTIAL EXPRESSION OF SURFACE PROTEINS: allows for changes in expression depending on the situation. For example, when a tick first takes a blood meal, a signal (such as a change in temperature) could prompt a alteration in expression that is more conducive to infectivity in the animal it has attached to. http://www.ncbi.nlm.nih.gov/pubmed/11209063

          3) PROTECTION OF SURFACE ANTIGENS: ospA or other surface proteins may shield antigens targeted by the immune system. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC96595/?report=classic

          4) LOSS OF CELL WALL and PRODUCTION OF CELL DUMMIES: removal of the cell wall and formation of spheroblasts could shield the bacterium. Use of vesicles containing relevant antigens could provide a sort of shielding effect for the bacterium, causing an immune response to be directed toward the vesicle. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC173695/

          Now, this is all well and good in pathogenesis class, but has no bearing on treatment of Lyme disease with antibiotics and these mechanisms have not been shown to be all that clinically relevant. However, to me, these are more reasonable than biofilm formation as an explanation for ***untreated*** persistence.

          Also interesting to me is that the observed lingering effects after treatment, such as arthritis, may be due to the similarity of the T-cell target on ospA and that of an antigen present in joints. The fact that individuals with a certain MHC II variant are at greater risk supports this idea. This presentation provides a nice discussion of the hypothesis and some debate when the FDA was considering the possible effects of a vaccine (Lymerix) aimed at ospA. http://www.fda.gov/ohrms/dockets/ac/01/slides/3680s2_02_lobet.pdf

          1. Windriven says:

            So JD, all this means the borrelia can’t be cultured or found by any other method exactly why?

            1. JD says:

              For culturing, I have always been taught that it is a media problem. I think that needing to survive in both mammals and ticks plays a role in this, as the nutritional requirements (and gene expression) would differ based on the phase. http://www.plospathogens.org/article/info%3Adoi%2F10.1371%2Fjournal.ppat.1002102 They did grow borrelia in this and many other studies, though, so it is not impossible. But it seems like the kinks haven’t been worked out for a diagnostic culture test from blood or CSF, plus these tests are laborious and negated by antibiotic treatment. (as discussed in the MMWR mentioned in the post)

              It is not so much that these mechanisms would lead to a majority of Lyme cases being undetectable, but they could account for some immune evasion, potentially affecting circulating immunoglobulin concentrations. We currently look for IGG and IGM, but as is widely known, these may not be detectable in all cases, and this could be one explanation. Once again, though, the clinical relevance of these immune evasion mechanisms has not been established.

              Lyme testing in general is tricky business, and I have to defer to the FDA-approved tests, as we at least have some idea of the sensitivity, specificity, PPV and NPV. Maybe PCR could be useful, but that isn’t perfect either. What we cannot have happen though, is to let one of these questionable tests through the gate without scrutiny. So I praise the CDC for being proactive.

              List of FDA Approved Assays

              http://lymediseaseguide.org/lyme-bacteria-hide-from-immune-system

              http://lymediseaseguide.org/test-accuracy-pcr

    3. weing says:

      Usually when the treatment doesn’t work, it means your diagnosis was not correct. If I was grossly incompetent and treated your hypothyroidism, thinking it was diabetes, you would not get better. Only if grossly incompetent, would I assume your problem was psychosomatic or continue thinking it was some sort of evolving diabetes and continue treating you for it like your Lymelit quacks.

    4. Jopari says:

      You seem to assume that the only thing that doesn’t react to antibiotics has to be psychosomatic. It’s not that clear cut.

      The view on this blog is that it probably isn’t Lyme disease, as symtoms and reactions fit Lyne disease symtoms and reactions like a glove fits my foot.

      Until it can be proven to be “Chronic Lyme disease”, at best the symtoms collectively can only be known as a syndrome. Syndromes are untreatable because no one knows what causes them, at which point, Lyme-literate people have no premise anyway.

      If it don’t quack like a duck, waddle like a duck or look like a duck, it probably ain’t a duck. That doesn’t mean it’s a goose.

      1. Jopari says:

        ADDENDUM: Not everything evolves like the common cold, and even then it has similar symtoms.

        1. Jopari says:

          I really hate myself.

          ADDENDUM: By symtoms, I mean not just what they feel, antibodies and bacterium existence as well. As Weing has pointed out, simply because the standard treatment doesn’t cure it doesn’t mean it is an evolved form of the disease. Likely it’s something else.

      2. mouse says:

        Jopari “Until it can be proven to be “Chronic Lyme disease”, at best the symtoms collectively can only be known as a syndrome. Syndromes are untreatable because no one knows what causes them, at which point, Lyme-literate people have no premise anyway.”

        Sorry, Just passing through, but where did people get this definition of syndrome? I keep hearing it. My understanding is that a “syndrome” is merely a disorder having a collection of symptoms and signs appearing together. They may have a well understood cause and treatment or they may not. Sure, we have things like chronic fatigue syndrome, but we also have turner syndrome, triple x syndrome, carpel tunnel syndrome, Cushing’s syndrome, etc.

        Here’s a list http://www.doctorslounge.com/studlounge/downdirty/syndromes.htm

        1. Jopari says:

          In that case I apologize, my understanding is incomplete.

        2. Jopari says:

          That definition came from psychology, I mixed it up, my bad.

          1. mouse says:

            Don’t apologize! and nothing personal. Sorry If I came across as accusatory.

            1. Jopari says:

              My apologies if I seem defensive. I realized I didn’t really study the entymology and the words as I was used to mightn’t be used in the same context, especially here where one word has multiple meanings in varied fields.

              1. mouse says:

                No, you didn’t sound defensive. No worries.

        3. Andrey Pavlov says:

          @mouse:

          It is a holdover from when things were syndromes and then became identified. That is why, for example, there is both Cushing’s disease and Cushing’s syndrome. They actually describe different things. The disease is the increased secretion of ACTH from the anterior pituitary. It is one cause of Cushing’s syndrome which would be a constellation of signs and symptoms that are like Cushing’s disease but caused by something else (like long term use of steroids).

          Not all syndromes turn out to be single diseases. Not all syndromes that are later identified to be diseases have all the components of the original syndrome.

          1. mouse says:

            Ahhh! Andrey thanks for the history. A few months ago a family member was telling me how I shouldn’t trust any diagnoses that is called a “syndrome” because they are wastebasket diagnoses based on subjective measures. Down’s syndrome immediately lept to mind, and having spent a few days reading up on genetic syndromes, it was pretty clear that that explanation couldn’t be accurate. But now I’ve been noticing similar definitions ever since then.

            1. Andrey Pavlov says:

              As always, my pleasure Mouse.

            2. KayMarie says:

              I think the terminology and naming of disorders sometimes does tend to make it seem like “it is just a wastebasket diagnosis that means your doctor is just a jerk or incompetent or blowing you off and refusing to do his/her job” is a common one.

              I think people have gotten used to how much we can fairly quickly and easily fix in medicine that the assumption is all things should have a test (or couple of tests) that proves you have the one thing and nothing else and some treatment that restores you to perfect health in a week to 10 days.

              Unfortunately our bodies aren’t that simple and many things that go wrong either can’t be fixed, or we have no good clinical test for it. Some of the annoying chronic things do cause biological changes but nothing you can make a test that meets the standards needed for a clinical test. However we aren’t good at communicating that medical tests used in the clinic do not see every last thing that can go wrong so “normal” doesn’t mean “you think nothing is wrong and I’m making it up”.

              There is some irony (or other word that may be the better one) that if your doctor very systematically goes through the symptoms, picks the specific diagnosis that best fits and gives you what treatments are available for that specific syndrome which are different from the disorders they ruled out, he/she is just throwing all patients in the same wastebasket of a diagnosis no matter what their symptoms and is not trying to find the cause…but the quack who uses the same alt test that is always positive and gives all their patients the same alt diagnosis even when the symptoms are very different is seen as giving you a specific diagnosis and getting the the root of your problem and surely if you do the same treatment as all their other patients for all the other symptoms that are nothing like yours you will be restored to more than perfect health in however many years they say it may take for the one set of things they recommend to every person they see to work.

              1. mouse says:

                Well, to be clear, my comment was based on a desire to clarify that the word syndrome in a diagnoses does not mean that the condition is poorly understood or untreatable. (Might be, might not, might be a mix).

                Possibly it is confusing when ones first exposure to the word is in it’s more preliminary form, I kinda have to use my imagination since my first real exposure was to syndromes that have been clarified.

                I think your comment is in response to the CLD thread in general, though.

                I agree, that it can be very helpful when medical folks clearly communicates that normal tests don’t mean that nothing is wrong with you. How doctors (and nurse who sometime deliver test results) handle this tends to vary greatly, IME.

              2. KayMarie says:

                Unfortunately a lot of scientific jargon and nomeclature is confusing at best, and often how the terms are used have changed over time, and the rules are not always followed. I think to often we don’t consider how a patient or person outside of the scientific community will respond to any give word.

                I replied where the thoughts occurred to me, I didn’t go through the thread to try to find a perfect home for them.

              3. mouse says:

                KayMarie “I replied where the thoughts occurred to me, I didn’t go through the thread to try to find a perfect home for them.”

                That’s cool. I wasn’t criticizing. I’m just never quite sure how to respond to a comment that is placed in response to my comment, but appears to be a more general comment or observational. It seems more friendly to respond, but one doesn’t alway have much to say.

                So – “I think your comment is in response to the CLD thread in general, though.” was not to suggest your comment was poorly placed, only that I didn’t have much to add in the CLD discussion.

                Facial expressions and body language would be helpful in these kinda interaction. But then again, I’m equally awkward in person.

              4. mouse says:

                I said “But then again, I’m equally awkward in person.”

                Actually, probably more awkward in person as my brain goes much slower than the typical conversation.

                Okay, I’ll leave you guys to your discussion, now. Sorry if I interrupted the flow.

              5. Jopari says:

                Only dogmatic speeches are ever interrupting here, discussion is healthy, it shows you think logically. Though the decreasing space is getting to me.

                One thing I’m worried about is that that’s what limelits are saying, that they can’t detect everything. I think the real problem is how people feel that their doc is ignoring them, it’s for some reason their natural inclination. As someone’s mentioned before, they believe they know the problem, they’re just looking for ways to support it.

    5. WilliamLawrenceUtridge says:

      And the prevailing view here has been that if a patient was not cured by the standard Lyme treatment, their symptoms are likely to be psychosomatic.

      Straw man – if a patient is not cured with standard treatment, then the possible diagnoses expands to include many things, including psychosomatic, but the possibility of it being Lyme becomes extremely small.

      This view assumes the standard treatment is effective for all or most cases of Lyme. It ignores the possibility of multiple and evolving pathogens being transmitted by tick bites.

      This view seems reasonable, what with the standard treatment being developed through a series of clinical trials and lab research that was validated by testing on a well-defined group with confirmed Lyme infection. So when people don’t get better with it, this suggests that they didn’t have Lyme in the first place (likely) or that they have some form of Lyme that doesn’t respond to conventional treatment (unlikely). And even if the latter is true, attempting to use the same treatment, just longer (and dosed in weird ways such as “pulsing” the antibiotics or delivering them through a shunt) is a stupid idea. Of course, when standard or extreme LLMD treatment fails in someone who showed no indication of having Lyme in the first place – that simply suggests that they never had Lyme in the first place. And assuming the treatment for post-Lyme should be “more of the same” is also stupid given the etiology is not ongoing infection.

      When AIDS patients are not cured by anti-HIV drugs, you assume it’s because HIV evolves and becomes resistant.

      Yes, but HIV is a rapidly-replicating virus, not a glacially-paced dividing bacterium, and there is strong, consistent, convergent evidence that HIV becomes immune to single types of antiretrovirals. There is no such evidence for B. b.

      Also, you can’t cure HIV, you can only reduce it to sub-lethal levels.

      When Lyme patients are not cured by the standard antibiotic treatment for Lyme, you assume their symptoms are psychosomatic.

      Perhaps that’s how you think medicine works, but then again, most CAM believers are more acquainted with how they are told medicine works by quacks and SCAMsters than they are with actual medicine.

      You must be a positive delight at parties.

    6. JD says:

      This view assumes the standard treatment is effective for all or most cases of Lyme. It ignores the possibility of multiple and evolving pathogens being transmitted by tick bites.

      When AIDS patients are not cured by anti-HIV drugs, you assume it’s because HIV evolves and becomes resistant.

      With these erroneous statements, you are insinuating that spirochete bacteria behave like HIV. What you fail to grasp is that HIV can be a quasi-species infection, while spirochetes have never been shown to behave this way (not exactly, see below). This means that one can be infected by hundreds of distinct HIV species, owing to the incredible genetic machinery this virus possesses. This is one of the reasons why HIV is so difficult to treat.

      Spirochetes are bacteria, they do not possess the ability to evolve as rapidly as something like HIV. I will help you out a bit here though, spirochetes do have the ability to switch out genetic cassettes, which can make it difficult for the immune system to effectively deal with the bacteria. They can also, theoretically, exchange genetic material allowing for resistance to develop. The problem is that neither of these issues has meaningfully impacted our ability to treat Lyme Disease clinically, as there is a big difference between the theoretical behavior observed in the lab and what is seen in practice. Other bacteria, like MRSA or CRE, have demonstrated resistance, but if resistance has developed to a spirochete like borrelia, we would know about it and would be treating Lyme Disease with a different type of antibiotic, likely a much more broad-spectrum variety. Or we would have patients dropping dead all over the place from cardiovascular complications (or a range of others) due to untreated Lyme Disease.

      And the same goes for your “multiple tick-borne pathogens” with the miraculous ability to evade all identification and treatment. We need evidence to show that these aren’t effectively identified and treated. Take RMSF as an example, this is another instance where a patient and physician would clearly see that something was wrong, and if it was missed or left untreated, as many as 30% of cases would die due to complications. I don’t know about you, but do you see people dropping dead all over the place with heart or lung failure due to RMSF? You can’t just hinge your arguments on the “pathogens are magical and we don’t understand them” gambit. They do behave in some really cool and interesting ways, but we know a whole heck of a lot about these.

  15. kaitch says:

    I thought we did not have Lyme disease in Australia until a friend here informed me that she had just been diagnosed with it. And whaddya know, there is an Australian Lyme disease association complete with stories of the nasty doctors who don’t understand us with our positive Lyme serology that we got done at A Lab In America!
    I haven’t looked into actual (reliable) sources, but there really isn’t Lyme disease in Australia, is there??!

    1. WilliamLawrenceUtridge says:

      Almost certainly not.

      1. Pierre Carles (PhD) says:

        Err … you realize that people in the XXIst century are travelling all over the place, don’t you ?
        It is one thing to say that there is no local reservoir for Bb in Australia, but a totally different one to assess that there is no Lyme disease in Australia.
        Besides, even non-endemic zones have shown recent evolutions in their infestation by Bb after the massive importing of US-born prairie dogs in various countries, sold in pet shops.

        1. MadisonMD says:

          Didn’t you notice that William said ‘almost’, and then provided link to NSW public health authorities saying:

          Although locally-acquired Lyme borreliosis cannot be ruled out, there is little evidence that it occurs in Australia. There is a continuing risk of overseas-acquired Lyme disease being imported into NSW.

  16. Frederick says:

    I heard about those phony Lyme clinic a while ago, Are those the guys who make people believe that other syndrome like MS or ALS might be chronic Lyme?

    In any case, my mother had ALS, she died on November 1 2009, And in the summer of 2009, she heard about chronic Lyme disease, and was talking about it. I was not well inform in medical science back them, But i was already pretty skeptic, I never trusted “too good to be true” cures, and “the big to be true” conspiracy or mavericks doctors. So I search and find some people speaking about how lot of MS and ALS cases where CLD, and how mainstream MD where not seeing it, evil big pharma big MD conspiracy whining. the red flags where there, So I was pretty convince this was BS, No reliable sources was talking about that. And She had seen the best neurologist in Montreal, Dr D’amour at the CHUM she specialized in ALS, we had no reason to distrust them. But, My mother was desperate, so she believed it and she was a fighter, she was not able to accept that there was nothing she could do.

    She find this “Doctor” in New york, I don’t know the name, or the clinic. and she send them blood samples and the “result” came back “positive”. Just so you know, back then my parent lived in our home village In Québec, in the middle of the Mauricie region, there’s not a single Lyme case ever reported there. Only in the southern regions of Québec have some Lyme cases pop out from time to time ( There are more as the years pass because of the average temperature being higher, less ticks dies in winter, or something like that http://sante.gouv.qc.ca/en/problemes-de-sante/maladie-de-lyme/).
    So I was VERY skeptical, She wanted to do the car ride to New York ( 8 hours drive), My father was angry and was not believing that BS at all, and she did not had the energy to do that , ALS was in full swing she was 90 pound ( from 220). Fortunately he convinced her, he did not want to drive all the way there, and he also believed is was BS. She wasted energy with that and they did not have the money for this. She nearly got screwed by one of this those clinic at the end of her life. So I have a personal Grudge against those cranks. Thankfully it ended well, but it injected some false hope in her mind.

  17. Newcoaster-MD says:

    Thanks. A very timely review of an annual summer topic here in the Pacific NW.

    I get people in with tick bites all the time. Sometimes they bring a tick, (or pieces of one) sometimes they have a bite with a faint rash. Sometimes they just have a rash and no recall of a tick or any insect. (for some odd reason, local custom is any unexplained localized rashes in wintertime are due to spiders…also never actually seen…, and those in the summer are due to ticks)

    I’ve never seen anyone who had more than a rash and a heaping helping of anxiety fueled by bad information. I’ve sent live ticks and serums for years and yet to have either come back positive. And while Lyme isn’t unknown here, our prevalance rate is 0.04%….so…pretty damn rare. Yet, people with undiagnosed vague symptoms are convinced they have chronic lyme disease, that doctors have been ignoring them for years, and that there is an epidemic of CLD.

    In our small community there have been several fundraising efforts for a local young person, who the family has recently “discovered” actually has CLD…not the various other equally bogus conditions that have been claimed in our weekly community paper for years…and the only place they can get the proper treatment is Mexico, where they are much more advanced in these things, more open minded, don’t you know. But that advanced “science” costs a lot of money, not to mention airfare and accomodation for the entire family, and the family is not shy about begging…

    1. jsterritt says:

      Just do a Google news search for “chronic Lyme” and you will find scores of contemporary “news stories” spreading misinformation about CLD. The usual format is bringing false balance to bear on the “controversy” about CLD. Being the Internet, many such “news stories” are in fact sales pitches for quack remedies trading on fears about CLD (e.g., Immune Booster IM, etc). But most are “human interest” pieces about people — and sometimes whole families — in local communities who are suffering from CLD. Invariably these “victims” are “spreading awareness” about CLD by raising funds for their own expensive and exotic treatments. One story from the Canton Repository features a couple too proud to claim disability benefits, but not too proud to request donations from all comers to help pay for their years-long, ongoing, bespoke woo treatments.

      1. simba says:

        http://www.thejournal.ie/lyme-disease-treatment-ireland-1515649-Jun2014/
        Have a look at this one, very sad story. I feel sorry for the lady mentioned and wish her all the best. Months of expensive treatment abroad and afterwards oral and then iv antibiotics…

        Staff at her hospital in Ireland told her: ““under no circumstances would they look at the diagnosis [of chronic lyme]”

        It’s quite sad that the reporting of this was so unbalanced. Yes they went for comment to the HSE, but it would have been nice to see something about the misinformation and quackery surrounding chronic lyme, comment from a doctor on the science of this and WHY they would distrust the diagnosis, and while they got the info about the tests right it would be nice to see some explanation of what that means in layman’s terms.

        1. JD says:

          I know that it is yet another phenomenon that has been co-opted by naturopaths and the like, but why is it that the woman in this story was so quick to jump on the Lyme Disease diagnosis, but then flippantly states that her adrenal glands were wiped out? Isn’t the simpler answer that her symptoms were due to the adrenal gland issue (ie Addison’s disease)? I honestly don’t know much about this disease and how reasonable an explanation this would be.

          1. KayMarie says:

            Probably going with the more woo version “adrenal fatigue”.

            All you need for that is some kind of stress, like the emotional and mental fall out of having your medical care team insisting you could not have ever been to the area where that disease occurs.

        2. simba says:

          It looks like, with the exception of the GP she finally found, the medical staff reacted politely (because we would have been told otherwise) and appropriately.

          Good for them.

    2. WilliamLawrenceUtridge says:

      and the only place they can get the proper treatment is Mexico, where they are much more advanced in these things, more open minded, don’t you know.

      Less “open minded” than “open wallet”, since the criteria for patient protection of foreign nationals seems to be “if they don’t have any money they are protected from any and all treatment”.

  18. squirrelelite says:

    I was checking the news headlines on MSN today and this popped up, courtesy of Prevention magazine.
    It may be genetic!
    It may be an STD!
    But, we can DETOXIFY you!
    Antibiotics may be almost useless, but we start with them anyway.
    And then we move on to modified citrus pectin, alginates, and artemisinin because they can find those hidden bacteria that antibiotics can’t get to!

    And don’t forget those heavy metals like lead, mercury and cadmium!

    But since we’re Ayurvedic, we may toss a little arsenic into our natural medicines just for luck!

    http://healthyliving.msn.com/health-wellness/the-truth-about-treating-lyme-disease

  19. Peter S says:

    “an integrative, holistic treatment protocol” (including acupuncture, mentioned on page two)

  20. WilliamLawrenceUtridge says:

    I never said this. Nor do I think the any prominent figure that didn’t sign were nefarious or had ill-intentions. I only stated possible scenarios as to why some might not sign since Peter asked.

    The assumption is still that they are acting in bad faith rather than acknowledging the scientific ambiguity and lack of good evidence. And references to “losing grant money” is still an ad hominem attack on their scientific integrity and yes, I would say greed – the willingness to keep a lab running irrespective the health of actual patients. It’s still a contemptible thing to say, and a shallow rationalization of why they aren’t agreeing with you that dodges the actual reason – lack of evidence.

    Even if they didn’t sign out of fear of losing grant money, I certainly wouldn’t vilify them for doing so. I would probably do the same – whatever I could to get all the research money I can. Unfortunately, ME/CFS in general is a controversial issue, so you have to tread carefully.

    Yeah…you may not think this isn’t “vilifying them”, but my read of it is that it’s vilification. You’re assuming that these researchers are not believing the evidence out of spite, or greed, or malice, or any motivation aside from an honest conviction that the evidence is not sufficiently convincing. Perhaps you aren’t deliberately attempting to smear them, a claim I have difficulty believing, but if that’s the case then let me make it clear to you: by saying they are deciding the merit of the research and findings on the basis of whether or not they can continue getting grant money, or sweet pharma lucre, or because they disdain CFS patients, or because they fear their institutions, or whatever, you are insulting them, imputing motivations on them, and revealing far, far more about your own preoccupations than you are about theirs.

    I think you misunderstood me as no accusations have been made.

    Oh, no, no accusations. Merely hints, allegations and things better left unsaid.

    And I am not going to name anybody in particular, but there are psychiatrists in the U.K. at major hospitals that care more about their opinion than the state of the scientific evidence. From an authoritative standpoint, they are considered credible. But from a scientific standpoint, they aren’t credible. They may have a few other psychiatrists that side with them, but those that truly understand the state of research and unique biomedical and physiological aspects of the syndrome generally ignore them.

    In case it wasn’t clear before, I don’t find your bare assertions and vague inferences of unspecified actors unsupported by citation to be convincing. And now onto my next, but linked point…

    But let me be real clear once again. I am not attacking anyone.

    No. You’re just claiming researchers are too egotistical, or too greedy for grant money, or too afraid of their superiors at their universities, or too irritated by the patients they study as part of their day jobs, to bother caring whether they’re actually helping anyone or not. No, that is in no way an attack.

    Sarcasm.

    That is definitely part of the problem. But it’s not the whole story. I recommend reading the book Osler’s Web.

    Given it’s 2014, I prefer to read scientific literature written in the current millennia.

    But these are people who work for credible universities, research institutions, and physicians/researchers who have published much of the existing ME/CFS literature. They are generally seen as credible by the science community (those who know them and their work), and generally publish in credible peer-reviewed medical journals. And there are great researchers in the U.K.

    Why isn’t it convincing to the whole? Are you going to retreat into vague claims about how the old paradigm doesn’t get replaced, merely its proponents die off?

    There are just a couple psychiatrists that would rather ignore all the biomedical research and publish from what my opinion is a lot of nonsense.

    Emphasis added on the most relevant part, in my opinion.

    They may really believe in what they are doing and may have absolutely no ill-intentions, but in my opinion and many experts opinions, they are misguided. Their unscientific opinions get much more weight than they should (especially in the U.K.) since most doctors don’t have the time to carefully sort through and understand all the evidence.

    Yet all those experts whose opinions you do agee with have not managed to convince the world of the veracity of their claims. That’s rather my point – your certainty of a biologic etiology is premature.

    It’s not that I disagree with them because it’s convenient to do so. I don’t agree with them because they have may anti-science beliefs.

    So they purely base their opinions and publications on raw speculation with no citations to back them up? They have no evidence to support their beliefs? It’s curious that they manage to get published then.

    I sort of feel like I am repeating myself at this point.

    Yes, agreed. I would summarize your opinion as an effort to be superficially polite while accusing a body of researchers you disagree with of being unethical. But done in a really nice, plausibly-deniable manner. Perhaps I’m reading too much into it, it’s just my opinion.

    1. Mike H. says:

      While I will disagree that there is lack of good evidence as a whole, I do agree (as I first stated) that they may have no sign because they disagree or don’t completely agree with the CCC criteria for whatever reasons.

      It is perfectly fair to disagree and not want to sign such a letter. I absolutely do not condemn any of the physicians researchers for not signing. No criteria is perfect. All current definitions can be improved upon.

      As far as the book. It’s more of historical reference that can help one understand the politics and why there are all these conflicts between the bureaucracies, patient advocacy organizations, and researchers/scientists. I don’t think there is currently anything can serve as a better reference. But an updated version of that book would be nice.

      Why isn’t it convincing to the whole?

      While the evidence is certainly hard navigate and mechanisms and etiologies of illness are confusing, I do think the evidence is convincing as a whole. There isn’t good evidence of working treatments, but there is sufficient evidence to show that it is a distinct syndrome with many measurable abnormalities.

      I feel that if there was a working treatment that worked for the majority, most would believe it’s a real distinct syndrome. The average doctor doesn’t have time to look through all the research. It’s a very confusing syndrome and this is partially is why it ends up as a wastebasket diagnosis. The name CFS doesn’t do the syndrome any good either since it is full of neurological, neuropsychological, immunological components. Some called it CFIDS for a while (Chronic fatigue and immune dysfunction syndrome), but it didn’t really stick. I’m personally not a fan of any of the labels. But I think common sense would tell you that a label that doesn’t accurately define what the syndrome really is can alter perception.

      That all being said, I think if the average doctor spent a couple weeks studying the science on CFS, I would like to think perceptions would change. Of course, I have nothing to prove this, but feels like a logical assumption from my point of view.

      But there is still a lot of more research that needs to be done.

      1. WilliamLawrenceUtridge says:

        While the evidence is certainly hard navigate and mechanisms and etiologies of illness are confusing, I do think the evidence is convincing as a whole. There isn’t good evidence of working treatments, but there is sufficient evidence to show that it is a distinct syndrome with many measurable abnormalities.

        Yes, but you come to the evidence with a preconceived idee fixee that it is a purely biological etiology. The reason not all researchers and experts find this convincing is because they lack such an idee and the evidence is not convincing without it.

        The average doctor doesn’t have time to look through all the research.

        The average doctor relies on entities like the CDC and other august bodies to determine when there is a consensus. Currently, there isn’t one for etiology or treatment.

        The name CFS doesn’t do the syndrome any good either since it is full of neurological, neuropsychological, immunological components.

        You’re missing “psychological”. Fatigue is a psychological symptom, and there are other psychological involvements, and many other reasons to suspect psychological involvement. But as a wastebasket diagnosis with no definitive test, it’s difficult and wrong to proclaim it all one thing and another – so we are essentially disagreeing over what the majority is.

        Some called it CFIDS for a while (Chronic fatigue and immune dysfunction syndrome), but it didn’t really stick.

        Yep, because of the lack of good, convincing evidence for immune dysfunction.

        But there is still a lot of more research that needs to be done.

        Agreed, which is why any certainty is inappropriate.

        1. Mike H. says:

          Fatigue is a physiological symptom of ME/CFS caused by mitochondrial function, high oxidative stress, amongst other things. There most certainly can be a CNS aspect to the fatigue (wired but tired), but that’s another issue.

          CFS can cause neuropsychological abnormalities and things like short term memory loss. Furthermore, co-morbid syndromes that can be a symptom of the syndrome (such as POTS and dysautonomia) can also cause neuropsychological symptoms and cognitive impairments as well as fatigue.

          http://en.wikipedia.org/wiki/Postural_orthostatic_tachycardia_syndrome#Symptoms

          There are way too many studies for me to demonstrate these facts, but they can be found on PubMed.

          Furthermore, many use these terms interchangeably these days. But I consider psychological symptoms caused by the organic disease state itself as neuropsychological. Symptoms that are caused by the external world – such as the stress involved in losing your job, wife, etc I consider psychological symptoms.

          With the amount of debilitation and stress the syndrome can cause, many of not most patients exhibit both psychological and neuropsychological symptoms.

          So I will have to completely disagree with your assessment that fatigue is a psychological symptom of ME/CFS based on mountains of evidence. I don’t believe the earth is flat either.

          1. WilliamLawrenceUtridge says:

            You seem to be completely missing my point, so I will be explicit.

            You seem to believe that it is clearly and unambiguously demonstrated that chronic fatigue syndrome is a purely physical disease based on a clear and unambiguous set of research literature. I am saying that this is your personal projection based on confirmation bias and motivated reasoning because you want it to be a purely physical disease. This assessment of the literature is unwarranted, as demonstrated by the failure of the research community to come to a single consensus on the matter. I do not believe your rationalization that the research community is biased against this idea because of bad faith reasoning, greed, ego, or personal feelings about patients. I really don’t care what you personally believe and I don’t find it convincing.

            Please let me know if any of these points require further clarification.

          2. Peter S says:

            “Fatigue is a physiological symptom of ME/CFS caused by mitochondrial function, high oxidative stress, amongst other things. There most certainly can be a CNS aspect to the fatigue (wired but tired), but that’s another issue.”

            What lab or other test reliably demonstrates mitochondrial dysfunction or high oxidative stress? I recall from my past interest in this subject that there was a lab in England called Acumen that supposedly had invented a test that looked directly at mitochondria but there was nothing resembling agreement on whether it was valid and I assume that it never went mainstream.

          3. Peter S says:

            From 1987!! Are we really much further along?

            http://www.nytimes.com/1987/07/28/science/fatigue-virus-has-experts-more-baffled-and-skeptical-than-ever.html

            At this point, in most cases of chronic fatigue syndrome, there is no identifiable cause, cure or preventive. Nor is there even an agreed-upon definition. But there is a growing opinion that the syndrome will turn out to include a wide range of illnesses, with causes and treatments differing from patient to patient.

  21. Nancy says:

    Dr Snyder,
    Your views are why we left your practice.
    My son had an engorged tick and we knew it tested positive for lyme. You told us to wait for a rash or a fever. He had neither. Instead he had a seizure 4 weeks later out of the blue. I hope the Amherst practice in which you work wakes up and smells the coffee and sends you packing. Your views are alienating to many and that is why we left.

    1. Harriet Hall says:

      Maybe your interpretation of events is correct; but you should recognize that there is at least a possibility that it is not. Maybe the tick did not actually transmit Lyme disease to your son. Maybe if Dr. Snyder had treated him for non-existent Lyme disease, he might still have had that seizure 4 weeks later and might also have had side effects from unnecessary antibiotics. Maybe his views constituted the best medical practice and maybe the seizure had nothing to do with the tick. There is really no way you could know for sure. I hope you have not gone from the frying pan into the fire and landed in the hands of a “Lyme-literate” quack.

      1. Pierre Carles (PhD) says:

        That’s a lot of “maybes”, Harriet, don’t you think ?

        1. Harriet Hall says:

          Yep. And the LLMDs are working on a lot of “maybes” too.

    2. WilliamLawrenceUtridge says:

      Seizure isn’t strongly associated with Lyme disease. Seizures can be caused by many things. A gap of four weeks between tick and seizure opens the door for many, many other potential causes, and children are at greater risk for idiopathic seizures.

      You may attribute your son’s seizure to Lyme disease, that doesn’t mean Lyme disease actually caused it.

      Please don’t seek out long-term antibiotic use for chronic “Lyme” disease, your son could get eaten from the inside-out by antibiotic-resistant bacteria.

    3. lilady says:

      Nancy, could you provide some additional information about your child’s seizure, which you attribute to a missed diagnosis of Lyme disease?

      - Which laboratory determined that the engorged tick, was indeed, a deer tick?

      - Did you receive a written report, which included the testing modality, from that laboratory confirming that the deer tick was infected with the B. burdorferi bacterium?

      - What testing did your child undergo to determine that his “out of the blue seizure”, was indeed, caused by Lyme disease?

      - What antibiotic (oral or IV) treatment was prescribed and what was the length of that treatment?

      - What is the name of the doctor who made the diagnosis of Lyme disease meningitis/encephalitis?

  22. Peter S says:

    “The classic ECM rash (an enlarging, red, circular, bull’s-eye rash at or near a tick bite) typically develops 1-2 weeks after a tick bite, but can occur anywhere from 3-30 days later. It then expands and darkens over another 1-3 weeks before fading. This classic rash is not the most common rash of Lyme disease, however, as it occurs in only about 30% of cases. Instead, the rash may be uniformly pink or red (or even darker in the center) without the target-like appearance, or may be a linear rash, expanding outward from the tick bite site. In the case of a patient who comes in with a vague, pink swelling within a day few days of a tick bite, we will typically wait and see what happens to the rash. If it is a local reaction, it will likely resolve within another few days. With Lyme disease, the rash will continue to enlarge and declare itself as an ECM rash.”

    I am confused by something you wrote here, and asking only so I understand, not to cross-examine. On the one hand you say that the classic ECM rash occurs in only about 30 percent of cases. But on the other hand, you say that if a local swelling seen initially is in fact Lyme, it WILL declare itself as an ECM rash; which suggests to me that that happens in 100 percent of true Lyme cases or certainly in more than 30 percent. I am having trouble reconciling these two statements and of course it may be my misunderstanding.

    1. Peter S says:

      I may be able to answer my own question here now that I read it yet again; I think what you mean is that SOME ECM rash will develop if it’s really Lyme, although not necessarily the bullseye one. SO I infer from that that if there is no rash at all, there is no Lyme.

      1. lilady says:

        IIRC, many ECM rashes and atypical rashes are “missed”, because ticks prefer to embed themselves in areas of the body which are dark and moist and some people have no symptoms (itching, pain caused by the foreign protein in the tick’s saliva). Rashes which appear on other areas of the body could be missed…unless of course, you undress in front of a full length mirror.

        I actually had a Lyme disease patient, who claimed to have “convinced” her husband that the full length mirrors in the try-on dressing rooms at an expensive boutique had the best full length mirrors and lighting, for her to check for embedded ticks and those rashes.

  23. hashilady says:

    I have not been sick for years. A couple of months ago I had sudden severe symptoms begin. I am being diagnosed with Lyme based on a positive band (IgM band 23) on a Western Blot and also a low CD 57. I am very skeptical, because my thyroid antibodies also came back as very high. I think I am dealing with Hashimoto’s. I started Synthroid, stopped Doxycycline, and started taking nerve pain meds and started eating whole foods all on the same day, and each day I feel better. BUT, I am told by Lyme doc that a low CD 57 is indicative of Lyme and that there is no other reason for a low CD 57. Also, even though LabCorp requires two bands to be positive on the test, Lyme patients are saying that band 23 is specific for Borrellia B. and that I should be treated. I am also told that the ELISA test that came back negative was probably because I was on the doxycyline and the reason I only tested positive for one band on the WB was probably because I was on antibiotics and also because the bacteria changes and hides. I am very interested to hear the opposing argument on all of this. There is a lot out there on why this is Lyme, but not enough info on why this is not. This is hard for a patient, since the symptoms are the same! Needless to say, fear is a driving factor. In your opinion, could my autoimmune condition be playing a key role in any of these test results?

  24. Borrelia says:

    The CDC does not create guidelines for Lyme disease, but rather they follow guidelines produced by the Infectious Diseases Society of America, (IDSA.) There are legitimate studies regarding the Lyme disease bacteria and how it affects phenotypes differently. This absolutely applies to the use of Lyme vaccines as well. Phenotype reactions to introduction of the bacteria or it’s parts (vaccine) into the human body can and do cause severe arthritis in certain phenotypes as is seen in this mice study: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2715682/ The results of this study are consistent with complaints sent to the FDA by patients who received the LymeRix vaccine. Those letters are still on the FDA’s site: http://www.fda.gov/ohrms/dockets/ac/01/slides/3680s2_15.pdf

    What the CDC and IDSA are doing is toying with semantics. The issue raised at the time the LymeRix vaccine was given was in relation to OspA and the human gene HLA-DR4. If they could not prove a direct cause with HLA-DR4, they simply said, the claims are unfounded. Simple semantics and you’ve been fooled. It did not rule out that the vaccine caused damage via other genetic pathways, but of course the CDC and IDSA did not tell you that, right? The above research shows the correlation between Lyme disease severity and different phenotypes in mice, which would be consistent to claims made by vaccinated humans. This particular study is very specific not only about the phenotype correlations, but it is careful to state that they expect more correlations to arise as the research PROGRESSES.

    It is best to do your own research rather than to rely on the word of the IDSA or CDC or me. It’s a terrible practice to ask a criminal if they are the ones who committed the crime. The answer in most cases is going to be a resounding, “No.” As a former court reporter, let me tell you I sat and listened as roughly 99% of arraigned men stated they were “not guilty” while roughly 30% of arraigned women claimed to be “not guilty.” So are men just being wrongly accused or do they choose to lie more often? I think you can figure that one out without a double-blinded study. This is why evidence is extremely important as is going to the source yourself rather than relying on what someone tells you. If you are as familiar with Lyme disease and the research, (as you seem to imply you are) then you realize that the IDSA as well as the CDC are considered by Lyme patients and many physicians to be the “criminals” in this controversy. Why would you ask the criminal if they are guilty and expect a “yes” response?

    No doubt, there are criminals on both sides of this controversy and there are good guys on both sides as well. You’ve created an absolute in your statements above, but I suggest to you that the only way to come to a reasonable conclusion is to do the research yourself and stop relying on what you heard or what may be touted as the “proper guidelines.” Guidelines are not evidence, though we might automatically assume they are based on evidence, just as you did. In order to prove that a particular set of guidelines is evidentiary, you need to go to the sources that produced the guidelines. After reading those sources, you will then need to research the worldwide body of evidence available and compare the results. When you can form an opinion based on the average findings of ALL of the evidence, then you can make a more accurate statement regarding Lyme disease and it’s vaccine, and I believe you will agree with me that the current guidelines are not based on evidence, but in large part on opinions. Guidelines based on opinion and not a consensus of all of the available evidence make for terrible medicine. I am pro vaccine, but based on the evidence available in Lyme disease at this point, the public is at great risk if Lyme vaccines are given at this time.

    Based on the research I have done — and I have spent thousands and thousands of hours reading many different books and studies — the weight of the evidence is in support of Lyme patients and LLMDs at this time, not the IDSA or CDC. I have watched as claims made by Lyme patients and LLMDs over the past 20 years are slowly but surely being proven and the CDC is admitting to some of them bit by bit. I expect it’s going to continue. I suspect the CDC does not want to admit their faults all at once. We live in a “cover your butt” society. Mainstream medical theories and treatments once accepted as correct have been proven wrong many times over the course of history, i.e., tuberculosis, H-pylori, autism, schizophrenia and there are many, many more. The IDSA and CDC do not have adequate evidence to back their claims, and evidence produced by themselves is considered bias and cannot be included unless evidence from outside sources is also considered so that there is an equal floor given to all sides of the case. Please do better research before you make absolute statements, and do not rely on “guidelines” as evidence. It’s a bit of an oxymoron to call a guideline “evidence,” don’t you think?

    1. WilliamLawrenceUtridge says:

      Simple semantics and you’ve been fooled. It did not rule out that the vaccine caused damage via other genetic pathways, but of course the CDC and IDSA did not tell you that, right?

      Similarly, not ruling out vaccine-caused damage also doesn’t mean that you’ve proven it. The burden is on the claimant – it’s insufficient to say “x hasn’t been disproven”, you need something positive or you won’t be taken seriously.

      It is best to do your own research rather than to rely on the word of the IDSA or CDC or me

      Why? In my experience, large groups of experts and government regulators particularly of health appear to be quite reasonable, cautious even, in basing their recommendations on the best-quality science. Meanwhile nonexperts tend to cherry-pick their sources and arguments to support a pre-existing idea and ignore dissenting information; they do not approach things from a broad perspective that incorporates all the data.

      I’ll never be able to do my own research, because I’m not a PhD in infectious disease specializing in Lyme. So I’ll trust the people who are.

      It’s a terrible practice to ask a criminal if they are the ones who committed the crime.

      It’s terrible to compare scientists and doctors to criminals merely because they disagree with you based on their more comprehensive understanding of the evidence base.

      but I suggest to you that the only way to come to a reasonable conclusion is to do the research yourself and stop relying on what you heard or what may be touted as the “proper guidelines.”

      …except those proper guidelines were drafted and reviewed by experts (twice!), and I’m not one. A reasonable conclusion would be that experts understand the topic better than me (they’re experts) and it’s arrogant to claim that a couple hours or even weeks on google or pubmed will give me the background and context of a PhD in microbiology.

      In order to prove that a particular set of guidelines is evidentiary, you need to go to the sources that produced the guidelines. After reading those sources, you will then need to research the worldwide body of evidence available and compare the results. When you can form an opinion based on the average findings of ALL of the evidence, then you can make a more accurate statement regarding Lyme disease and it’s vaccine, and I believe you will agree with me that the current guidelines are not based on evidence, but in large part on opinions

      You’re assuming, insulting, actually, the resarchers for not doing this. And as far as I can tell, the reason is because you disagree with their conclusions. I have no way of knowing if you are a patient advocate, a nutter, an expert with an appropriate PhD, but I do know that the peopel who put the guidelines together were the latter. I’ll trust them over a random commentor.

      the weight of the evidence is in support of Lyme patients and LLMDs at this time

      Preclinincal evidence is a pyramid that leads to clinical trials. The clinical trials strongly suggest that LLMDs are putting their customers in danger for no good medical reason, and that they’re unethical hacks. The best evidence does not support long-term antibiotic use.

      It’s a bit of an oxymoron to call a guideline “evidence,” don’t you think?

      And it’s deceptive to pretend that the guidelines produced by an expert body drawing upon evidence aren’t evidence-based.

      1. Borrelia says:

        This is where you are wrong. When the weight of the evidence does not support the doctor or researchers more than the patients, a good doctor knows that the default should be the patient until proven otherwise. But if you did your homework, then you know I only gave you the tip of the iceberg regarding the available research in this disease. There are far more studies out there that disprove the IDSAs opinion. I suspect you are more insistent on being right than knowing truth.

        Doctors and researchers who refuse and acknowledge evidence which causes harm to persons are criminals. Your first job as a doctor is to “Do No Harm.” Your mantra to “keep it simple stupid” — you know as well as I that this is the medical school mantra or K.I.S.S. — is outdated. It relies on little more from physicians than the minimal CE credits and five minutes of exam time per patient. It doesn’t take much talent when you become a doctor who runs his practice like this. Any Tom, Dick & Harry can do that. What makes you great is your ability to learn and keep learning and then to be able to admit you were wrong when the evidence shows you were wrong.

        1. simba says:

          I find it interesting that people who come on arguing against science-based medicine will often assume that those arguing against them are doctors. It’s like they’re unable to comprehend that other laypersons may also disagree with them, or like they confuse us with the doctors in their own lives who they fight against.

          Just something I noticed on the guns thread too.

          The default is the null hypothesis. If you have enough evidence you can reject the null hypothesis (and argue in favor of chronic lyme and LLMDs). But you don’t get to decide that in this special case, for no reason, you get to reject the null hypothesis without evidence because ‘the default should be the patient unless proven otherwise’. That reveals a profound misunderstanding of how evidence works.

          1. Borrelia says:

            I prefer to look at all aspect of life based on all of the evidence. I’ve looked at both sides of the evidence. That is the difference between someone who really wants to know the truth, versus someone who simply wants to have something to argue about.

            1. weing says:

              “I’ve looked at both sides of the evidence. That is the difference between someone who really wants to know the truth, versus someone who simply wants to have something to argue about.”

              That’s why you are just arguing about it instead of publishing your research. You took the easy road.

            2. WilliamLawrenceUtridge says:

              I prefer to look at all aspect of life based on all of the evidence. I’ve looked at both sides of the evidence. That is the difference between someone who really wants to know the truth, versus someone who simply wants to have something to argue about.

              I wasn’t aware that evidence has sides. Certainly it has interpretations, but the evidence is merely a collection of facts.

              I’m curious about your explanation why the IDSA came to a completely different conclusion about CLD than you did (twice!) and I expect your answer will rhyme with “onspiracy”.

          2. simba says:

            People here have also looked at both sides of the evidence- key words, both sides. And they/we have assigned appropriate weight to the evidence (see the hierarchy of evidence).

            This is not to be elitist, or to be mean to patients, but because if you don’t do that you can draw very very wrong conclusions. After all the four humors, bloodletting etc. were supported by the patients of the time. Individual people, individual data sets, are not enough to draw a conclusion and there are many reasons for that- go read a little about bias, the value of testimonials, and study design.

            Or read about the history of medicine and all the weird and wonderful conditions and treatments people used on the strength of pre-scientific medicine- clever patients, experienced doctors, all of them were consistently mostly wrong until we started using science to evaluate our claims.

            It seems rather like you looked at the evidence with a preconceived idea as to what the result ‘should’ be.

            1. WilliamLawrenceUtridge says:

              It seems rather like you looked at the evidence with a preconceived idea as to what the result ‘shouldmust be

              FIFY

        2. WilliamLawrenceUtridge says:

          When the weight of the evidence does not support the doctor or researchers more than the patients, a good doctor knows that the default should be the patient until proven otherwise.

          Really? What if the patient says “damn, I really don’t think Advil is doing it for me, can I have some morphine?” Also, the weight of the evidence in humans does not support long-term antibiotic use for chronic Lyme disease. Further, a good doctor knows that putting in a central line to deliver pulsed antibiotics is a recipe for a central line infection with antibiotic-resistant bacteria, and would refuse to do it.

          But if you did your homework, then you know I only gave you the tip of the iceberg regarding the available research in this disease.

          And I didn’t read any of it because I’m not interested. Instead I defer to real experts – people who are too busy to start lengthy discussions with random people on the internet.

          There are far more studies out there that disprove the IDSAs opinion.

          And I assume your contention is that the IDSA is ignoring this information because of spite and malice? And that’s where you lose the argument.

          Your first job as a doctor is to “Do No Harm.”

          I’ll just point out that such a statement would preclude any action – surgery can lead to death, even cutting the skin can lead to infection, misdiagnosis can lead to overtreatment and even something as simple as an x-ray can cause cancer.

          I’m not a doctor, but a real doctor is actually attempting to balance harms with benefits.

          Your mantra [snip] to be able to admit you were wrong when the evidence shows you were wrong.

          Your rant was lovely and full of fury, but I’m not a doctor. I’m just a person willing to admit that actual experts, in particular expert bodies, are far more likely to get it right than I am, or than random commentors are, and thus I will defer to them. Actual experts have investigated chronic Lyme disease and concluded that the “Lyme” part is probably wrong for at least a substantial portion of those claiming the diagnosis. That’s good enough for me.

          1. Pierre Carles (PhD) says:

            As one of the so-called “world experts” in my own field of research, allow me to give you a piece of advice: never idealize experts. You seem to view them as super-humans devoid of any contextual pre-conceptions, judging arguments in a void. They are not, regardless of the topic involved. They are as much prone to vanity, confirmation biases, personal grudges or irrational choices as the layperson.

            1. weing says:

              “As one of the so-called “world experts” in my own field of research, allow me to give you a piece of advice: never idealize experts.”
              I do defer to what my car mechanic tells me is wrong with my car, but I don’t think I idealize him.

      2. Borrelia says:

        Do your homework. There have been a total of four double-blinded studies in Lyme disease with less than 300 participants. One found in favor of Lyme patients and LLMDs. One found in favor of the IDSA. The two others were thrown out for serious design flaws. If you think that is enough evidence to come to a conclusion for guidelines in such a serious matter, then you don’t need an M.D., you need a degree in Mathematics.

        1. WilliamLawrenceUtridge says:

          Well we can’t review them because you didn’t include any weblinks, titles, PMIDs, authors, journals, dates or anything else. While I would delight in “doing my homework” (I do enjoy looking at studies), I’m unwilling to do homework without being given the test problems.

          Further, the guidelines didn’t merely draw upon four double-blind studies, there is considerable background knowledge and material that went into the guidelines as well.

          And finally – I would suggest, rather strongly, that you make it clear if you are discussing chronic Lyme disease or regular Lyme disease, as the two are fairly different in clinical presentation, tests, symptoms, etc.

          1. Pierre Carles (PhD) says:

            Answer to your request for specific homework assignments:
            DeLong, Aug. 19, 2012, Contemporary Clinical Trials

            If you have the mathematical background to read this paper, you will understand why the so-called “convincing body of evidence” put forward by CDC is really just a set of ambiguous and inconclusive studies.

        2. MadisonMD says:

          Can you identify or detect Borrelia after treatment is completed? This seems to be a pre-requisite for your hypothesis that would be required event to warrant a clinical trial. Highly sensitive methods are available for direct detection so if you are correct, it should be straightforward to provide evidence of residual spirochetes.

          If you conclusively demonstrate this, I would believe you without any clinical trial.

          1. Pierre Carles (PhD) says:

            Literature actually shows a paucity of highly sensitive methods, in this case. That is precisely why the debate is on-going.

            1. MadisonMD says:

              If you can’t detect something, how do you know it is there?

              1. Windriven says:

                He must be a pinball wizard ;-)

  25. Borrelia says:

    I have far too many things I would love to confront regarding this particular post of yours. The LymeRix vaccine (spelled with an “e” by the way) WAS based on OspA, outer surface protein A. http://www.fda.gov/ohrms/dockets/ac/01/briefing/3680b2_03.pdf

    Vaccinated individuals did show positive Lyme tests after being vaccinated. This is a problem since we know many vaccines do not keep one from getting the disease but are intended to aid the body in fighting the disease should a person get it. A vaccine that shows positive results on post vaccine testing fails the general public. This problem could lead to both the overdiagnosis of Lyme disease as well as mistreatment or undertreatment. That is just one of the problems with the LymeRix vaccine. I might mention that the vaccine makers settled out of court and paid the victim’s attorney fees. The 2nd problem with the vaccine: there is ongoing research regarding the outer surface proteins of Borrelia Burgdorferi. One of the topics being researched is that outer surface protein C may be the gatekeeper which allows the bacteria to disseminate past the skin. Not all Borrelia carry OspC and some carry a “wildtype” OspC. If proven that OspC is the gatekeeper protein, then all Borrelia which do not carry this outer surface protein would remain a localized reaction and never disseminate inside the human body, therefore no Lyme disease. This could also mean that the EM rash is more indicative of a localized reaction rather than an indicator of disseminated, which could mean that a rash at all may be a poor indicator of disseminated disease. So if you have a vaccine based on OspA, but does not include OspC, you may have a vaccine that is completely worthless. OspA and OspB are sensitive to environmental changes. Studies show their activity diminishes as the temperature rises, while OspC becomes more active as the temperature rises. To quote from the research: “These results suggest that B. burgdorferi senses environmental changes in temperature by altering the level of DNA supercoiling, which then affects the expression of the ospAB operon and the ospC gene.” This is exactly what many patients and LLMDs have believed for more than 20 years and the SCIENCE is proving it. Here is that citation: http://www.ncbi.nlm.nih.gov/pubmed/12791146
    That is likely another reason the LymeRix vaccine was pulled. I hope I have produced enough quality evidence to at least wet your tastebuds. My mind is full of this research. I’d be happy to throw many more citations and evidence your way, but I’m hoping you will do your own research and reconsider taking an absolute position on the issue. I agree with you that not all people who think they have Lyme will have Lyme. Fear is a huge factor in many things. But neither fear or symptoms that mimic Lyme disease are evidence in support of the IDSA guidelines, nor do they disprove the theories and treatments given by LLMDs. Only evidence can decide on which side the weight will fall. The evidence is out there. You simply need to have motivation to follow the trail and honesty and integrity to admit the truth of what you find.

    1. WilliamLawrenceUtridge says:

      The LymeRix vaccine (spelled with an “e” by the way)

      LymeRix is used six times in the post. Five times it is spelled without the “e”. Think the sixth is a typo?

      A vaccine that shows positive results on post vaccine testing fails the general public

      Depends on the test, doesn’t it? If it’s a test for antibodies, then it’s unsurprising that a vaccine would produce an antibody response.

      I might mention that the vaccine makers settled out of court and paid the victim’s attorney fees.

      Which is scientifically meaningless, because business are businesses, and if the cost of settling is less than the cost of a law suit, they will do so. It’s disingenuous to pretend otherwise.

      This is exactly what many patients and LLMDs have believed for more than 20 years and the SCIENCE is proving it. Here is that citation: http://www.ncbi.nlm.nih.gov/pubmed/12791146

      That’s from 2003, 11 years ago. Presumably the scientific community is aware of it. What was the response to this, or are you perhaps cherry-picking a single paper and ignoring the contradictory information?

      My mind is full of this research. I’d be happy to throw many more citations and evidence your way, but I’m hoping you will do your own research and reconsider taking an absolute position on the issue

      Why post here? We’re all closed-minded skeptics/Big Pharma Shills/CDC false-flaggers/just plain evil. Why not write and submit an article to a peer-reviewed journal? It’s extremely unlikely that anyone here will have the specific expertise to debate you on fine points of fact – ti would take years to accumulate that kind of experience. You know who has that kind of experience? Researchers and peer-reviewers. You want a substantive response, you should go there.

      Please don’t throw any more citations my way at least – I won’t read them. I’ll just defer to the experts, because they’re experts.

      You simply need to have motivation to follow the trail and honesty and integrity to admit the truth of what you find.

      Sadly there is no test for honesty and truth, and for most of us the ability to distinguish between “an honest reinterpretation of the data” and “axe-grinding crazy person” is beyond us. Most here don’t spend all day obsessing over this topic. So please, publish in a peer-reviewed journal, just make sure you respect science while doing so.

      And if I may venture a suggestion – maybe avoid accusing researchers of dishonesty, lies, incompetence and bias.

  26. WilliamLawrenceUtridge says:

    The LymeRix vaccine (spelled with an “e” by the way)

    LymeRix is used six times in the post. Five times it is spelled without the “e”. Think the sixth is a typo?

    A vaccine that shows positive results on post vaccine testing fails the general public

    Depends on the test, doesn’t it? If it’s a test for antibodies, then it’s unsurprising that a vaccine would produce an antibody response.

    I might mention that the vaccine makers settled out of court and paid the victim’s attorney fees.

    Which is scientifically meaningless, because business are businesses, and if the cost of settling is less than the cost of a law suit, they will do so. It’s disingenuous to pretend otherwise.

    This is exactly what many patients and LLMDs have believed for more than 20 years and the SCIENCE is proving it. Here is that citation: http://www.ncbi.nlm.nih.gov/pubmed/12791146

    That’s from 2003, 11 years ago. Presumably the scientific community is aware of it. What was the response to this, or are you perhaps cherry-picking a single paper and ignoring the contradictory information?

    My mind is full of this research. I’d be happy to throw many more citations and evidence your way, but I’m hoping you will do your own research and reconsider taking an absolute position on the issue

    Why post here? We’re all closed-minded skeptics/Big Pharma Shills/CDC false-flaggers/just plain evil. Why not write and submit an article to a peer-reviewed journal? It’s extremely unlikely that anyone here will have the specific expertise to debate you on fine points of fact – ti would take years to accumulate that kind of experience. You know who has that kind of experience? Researchers and peer-reviewers. You want a substantive response, you should go there.

    Please don’t throw any more citations my way at least – I won’t read them. I’ll just defer to the experts, because they’re experts.

    You simply need to have motivation to follow the trail and honesty and integrity to admit the truth of what you find.

    Sadly there is no test for honesty and truth, and for most of us the ability to distinguish between “an honest reinterpretation of the data” and “axe-grinding crazy person” is beyond us. Most here don’t spend all day obsessing over this topic. So please, publish in a peer-reviewed journal, just make sure you respect science while doing so.

    And if I may venture a suggestion – maybe avoid accusing researchers of dishonesty, lies, incompetence and bias.

  27. Borrelia says:

    “Most here don’t spend all day obsessing over this topic. So please, publish in a peer-reviewed journal, just make sure you respect science while doing so.”

    I think you just made my point. If you follow like sheep because you don’t care about the topic, anyone can throw a guideline at you and you will buy it hook, line and sinker. You’re a bought for and paid for physician, which is useless to society because you do not think for yourself. You’re pimped out. You follow guidelines but don’t care if the sources are scientific, and because someone told you they were scientific you believed it. You do what you’re told whether it is scientifically accurate or not because you’re too lazy to fact check. Facts are not important to you, and you’re apparently unable to distinguish good, credible sources from non-credible sources.

    When you are proven wrong by someone, you back pedal. You remind me of the C- grade point average physicians that came out of school — you know the ones that the public has no idea just barely squeaked by in school and just barely squeaked by their boards, but now they own a practice and treat patients. There are other doctors (elite ones) who fix your blunders and your patients illnesses when your patients figure out what you’re really about.

    Respect for science means you look at the science. Believing in something not proven by science is called faith, not science. You believe in faith, which is fine if you’re practicing spiritual medicine or going to church. If you believe in science, by all means read the science and compare the science and use the science. It’s egotistical and naive for you to believe that only those whom you choose to blindly follow produce science.
    http://www.greenwichtime.com/local/article/AG-chides-Lyme-panel-for-not-following-settlement-360055.php

    1. Windriven says:

      Who the hell are you addressing?

    2. simba says:

      Everyone, Windriven. Everyone who disagrees with them is a doctor by default.

      Must go tell my mother. She’ll be so proud.

      1. Borrelia says:

        If you’re going to make an argument in favor of a physician/organization/belief, then you ought to understand the scientific data and expect that you will receive arguments back in opposition of your opinions. It doesn’t matter if you are physician or a lay person. If you choose to take a stand on a position you are not properly educated about, you damage others. Your arguments are moot and merely prove to show your interest in drama and ego and your true lack of interest in the subject. You can lead a horse to water, but you can’t make him drink. The rest is up to you. If you’re really concerned about the issue and want to qualify your statements, put your ego aside and make an honest attempt to understand what this controversy is about. Ignorance is harmful to everyone in this debate.

        1. Windriven says:

          I still don’t know who the hell you’re talking to or what the hell you’re going on about. Perhaps I’m late to this particular party.

          Do you have a point? Can it be made clearly and concisely?

          1. weing says:

            @windriven,
            I thought the point was to just argue. I appears to be aimed at WLU. At least that’s my hypothesis.

            1. Windriven says:

              William sometimes has a knack for drawing out the best in people, doesn’t he? ;-)

        2. WilliamLawrenceUtridge says:

          If you’re going to make an argument in favor of a physician/organization/belief, then you ought to understand the scientific data and expect that you will receive arguments back in opposition of your opinions.

          No I shouldn’t. Unless I have relevant expertise in that very area, even the idea that I can delve into the primary literature and conclude is rather absurd. My argument is “they are the experts, so they know far better than I do”. And certainly I am going to trust them ahead of someone who immediately assumed that because I disagreed with him/her I am a) a physician and b) being bribed. Because you sound like a frothing lunatic and certainly justifies the stereotype of a violent pro-chronic Lyme disease protestor who has made Allen Steere fear for his life.

          If you choose to take a stand on a position you are not properly educated about, you damage others.

          How? Because I choose not to join your crusade against evil physicians unwilling to give patients whatever they demand, and damn the evidence? Have you considered how your advocacy for long-term antibiotic treatment and the evils of the IDSA may have resulted in systemic infections through central lines and so polluted the research on Lyme disease that you are making it harder to get real answers?

          Your arguments are moot and merely prove to show your interest in drama and ego and your true lack of interest in the subject.

          That’s a mighty ironic statement coming from someone demanding I change my mind because “random internet commentor says so”.

          If you’re really concerned about the issue and want to qualify your statements, put your ego aside and make an honest attempt to understand what this controversy is about.

          I’m not actually that concerned about the issue, and my ego is just fine. You want to convince me? Convince the scientists. I’ll change my mind when they do.

          But if you’re here, at least you aren’t making death threats to researchers, so that’s good.

          Ignorance is harmful to everyone in this debate.

          I agree. Let me test yours. What are the counter-arguments to your arguments? What are the reasons given by experts for not agreeing with you?

          1. Pierre Carles (PhD) says:

            “they are the experts, so they know far better than I do”
            Here we go again !
            As a scientist, I call this attitude blind faith. Trusting experts is often is a reasonable preconception, when one is totally ignorant of a topic. But to make an absolute of it, in the way of “I will never be able to understand first-hand sources”, that is a very dangerous attitude.
            You are, in fact, surrendering your critical thinking to social criteria that define who is considered an expert or not.

            1. Windriven says:

              We all trust those with expertise outside of our own fields of specialty. Even within our own specialties, few of us have reproduced the many experiments that form the framework on which the specialty grows.

              One of the goals of a liberal education is to equip us with the tools to investigate and understand areas new to us. One reads the specialist literature, weighs differences where they exist, seek informed guidance where it is needed.

              What is the alternative? A quixotic quest to know all that is knowable and to know it first hand? Or to slouch into a pit of pan-ignorance, wrapping one’s self in Fitch’s paradox and calling it a life?

              “You are, in fact, surrendering your critical thinking to social criteria that define who is considered an expert or not.”

              This is where you have it wrong. Because it is not a social criterion that defines expertise; experts abound and some will tell you they are the only experts who know the real truth. Again it is the critical thinking skills that one has learned along the way. We are each responsible for separating the wheat from the chaff.

    3. WilliamLawrenceUtridge says:

      If you follow like sheep because you don’t care about the topic, anyone can throw a guideline at you and you will buy it hook, line and sinker.

      Well, no, not really. The guidelines I pay attention to are those informed by science, made by bodies of experts, and officially adopted by the relevant societies. For instance, I would adhere to the guidelines of the American Heart Association for blood pressure, or the CDC for, well, just about anything, or the IDSA for infectious diseases like Lyme disease. I would never adhere to the guidelines on GMOs informed by Michael Pollan or Greenpeace.

      You’re a bought for and paid for physician, which is useless to society because you do not think for yourself.

      I’m not a physician. And if your response to any objection to your statements is “you must be bribed”, that speaks more to your inability to be convincing than it does to the fraudulent activities of the interlocutor.

      There are reasons other than bribery to defer to expert bodies – notably recognition that they are experts.

      You follow guidelines but don’t care if the sources are scientific, and because someone told you they were scientific you believed it.

      Yes, the experts at the Infectious Disease Society of America, who are experts in infectious disease. I trust them to be scientific. You, whose second argument out of the gate was to assume I had been bribed, I do not. Accusing someone of a conflict of interest, may I point out, is not a scientific argument.

      Facts are not important to you, and you’re apparently unable to distinguish good, credible sources from non-credible sources.

      False and true. Facts are quite important to me, but because I will never have the expertise to distinguish good facts from bad (or for that matter, good sources from bad), I defer to experts who are far, far better equipped to do so.

      Your response to facts you don’t like is apparently to sling accusations. Which I will repeat, is not a scientific argument.

      You remind me of the C- grade point average physicians that came out of [snip] when your patients figure out what you’re really about.

      Again, not a physician.

      Respect for science means you look at the science.

      Yes, it also means respecting expertise when you don’t have any. And I don’t. You kow who does? The IDSA. That’s kinda their defining feature.

      Believing in something not proven by science is called faith, not science. You believe in faith, which is fine if you’re practicing spiritual medicine or going to church.

      Actually, what I have faith in is the scientific process and the people involved. Do you actually expect me to believe that you look up the original sources for every single decision you make? When you’re thinking about Advil versus Tylenol, you go back to primary material? If you are bit by a rabid dog, do you reach for Jenner’s classic treatise? I just go with the latest expert guidelines. I have faith in the process and the people because I don’t have the expertise or time to review primary publications.

      I also don’t have an axe to grind, unlike apparently you.

      I also didn’t immediately drop into insults and accusations as soon as I was challenged. Something that, in my experience, many chronic Lyme patients have done almost immediately.

      http://www.greenwichtime.com/local/article/AG-chides-Lyme-panel-for-not-following-settlement-360055.php

      Yes, that’s a story about Richard Blumenthal’s attempts to force a political decision onto a medical body. And what was the response to the independent inquiry again? Scientific questions are answered empirically, not politically. Attempting to force something through politically means you’ve lost the empirical argument.

      Maybe one day they’ll link chronic Lyme disease to Lyme disease. Maybe they won’t. But either way – proclaiming the question resolved on the basis of a foregone conclusion and conflict of interest accusations means you’re not doing science.

  28. Borrelia says:

    William,

    If the medical community knew all of the studies available, we wouldn’t have a Lyme controversy to begin with. If you need a more recent article to read then please feel free to take this 2013 article for which the citations and sources are at the bottom should you choose to follow up. http://www.uvm.edu/medicine/?Page=news&storyID=17496&category=comresne.

    Is scientific evidence not sufficient enough for you? How many citations does one need to produce before you stop coming up with a diversion that attempts to uphold your opinions? You post your opinions as though they are truth, but refuse to do any footwork regarding the actual scientific evidence. If you were really educated about Borrelia Burgdorferi and Lyme disease and were familiar with the IDSA guidelines for diagnosis and treatment, then you would understand that there is overwhelming scientific data that does not support those guidelines and was not considered at all in the making of those guidelines. Please look at the authors of those original guidelines which were simply upheld — not rewritten — in the past few years. Approximately 50% of the “evidence” used to support those guidelines came from members who sat on the guidelines panel. That panel consists of approximately 12 people. If you believe that 6 of those panel members are so amazingly brilliant that they are able to produce the wealth of information aroudn the world regarding Borrelia Burgdorferi, then you’re right, I cannot argue with you. If you are aware of how many studies are involved around the world for creating guidelines for the treatment of cancers, then you realize that the IDSA has seriously failed in it’s duty to Lyme disease patients. Please do continue making your argument. I find it rather humorous. I thought this blog was called “sciencebasedmedicine.org.” Perhaps I misread. Did I land on the pseudosciencebasedmedicine.org blog?

    While you pretend that the disease is not serious, is easily diagnosed and cured, here is some more information regarding the affects this bacteria has on the fetus. 33 of 280 fetuses of mice infected with the bacteria died; ZERO of 191 fetuses died in the non-infected group. It’s not a disease to be taken lightly, particularly by people who claim interest in science.

    1. weing says:

      “That panel consists of approximately 12 people. If you believe that 6 of those panel members are so amazingly brilliant that they are able to produce the wealth of information aroudn the world regarding Borrelia Burgdorferi, then you’re right, I cannot argue with you.”

      What if you believe that one person, like you, is able to gather all the information on Lyme, sort it out, and determine what the overwhelming scientific data supports?

      1. Pierre Carles (PhD) says:

        Well, that is basically what any scientist worth her first paper is doing everytime she starts working on a topic new to her.
        No big deal, anyone with a proper training can do that in a couple of months-time.

    2. Windriven says:

      The Vermont link is interesting but only as a starting point. The finding in a mouse model may or may not prove out in humans.

      ““We suspect that attributes specific to the infected individual may contribute to differences in Lyme disease and rheumatoid arthritis outcomes,” says Teuscher.”

      That is rather a long way from a smoking gun.

      1. WilliamLawrenceUtridge says:

        Not to mention, we already know that Lyme disease causes arthritis, it’s one of the associated symptoms and conditions. That’s not remarkable, and not really controversial. The controversy surrounding Lyme disease is related to the alleged “chronic” form in those who have never shown specific symptoms of infection.

    3. WilliamLawrenceUtridge says:

      If the medical community knew all of the studies available, we wouldn’t have a Lyme controversy to begin with.

      Are we talking about Lyme disease or chronic Lyme disease? I don’t doubt that antibiotics are a safe and effective treatment for Lyme disease, or that Lyme disease causes arthritis. It is specifically the vague constellation of nonspecific symptoms that characterizes chronic Lyme disease that I doubt antibiotics treat. And as far as I know, that’s where the controversy is. Further, I’ll note that the article you link to seems to talk about Lyme arthritis genes in mice.

      How many citations does one need to produce before you stop coming up with a diversion that attempts to uphold your opinions?

      Depends what we’re talking about. The one you give above is enough to convince me of unique genetic susceptibility to Lyme arthritis, a recognized sequelae of Lyme infection. Doesn’t change my mind a whit regards chronic Lyme.

      Perhaps I misread. Did I land on the pseudosciencebasedmedicine.org blog?

      No, you got the url correct.

      While you pretend that the disease is not serious, is easily diagnosed and cured, here is some more information regarding the affects this bacteria has on the fetus.

      I’m not pretending any of that. I’m not claiming Lyme disease doesn’t exist or that it’s not serious – Lyme disease is serious, and it certainly exists.

      What it doesn’t seem to cause is a chronic condition in people who have never been in an area that is endemic with Lyme ticks, never show signs of exposure to Borrelia burgdorferi and only show nonspecific symptoms not characteristic of actual Lyme disease.

    4. Pierre Carles (PhD) says:

      Dare I say “amen” in a supposedly science-driven debate ?
      You pinned the situation perfectly. Thank you.

      1. Windriven says:

        Sure. Though no one has the foggiest notion which idea you are affirming. So that makes it especially safe.

  29. Borrelia says:

    William,

    If the medical community knew all of the studies available, we wouldn’t have a Lyme controversy to begin with. Since you seem to imply that an earlier case is invalid, here is one from 2013 with sources listed at the bottom should you choose to follow up.
    http://www.uvm.edu/medicine/?Page=news&storyID=17496&category=comresne.

    Infectious Disease Treatment Guidelines Weakened By Paucity of Scientific Evidence
    Daniel M. Keller, PhD
    November 13, 2009 (Philadelphia, Pennsylvania) — “Two separate analyses presented here at the Infectious Diseases Society of America (IDSA) 47th Annual Meeting revealed that most of the society’s treatment guidelines are based on expert OPINION, nonrandomized trials, and case studies.
    Only about 15% of the guidelines are supported by randomized controlled trials (RCTs), considered the highest level of evidence.”
    Source: https://idsa.confex.com/idsa/2009/webprogram/Paper28861.html

    http://www.ncbi.nlm.nih.gov/pubmed/7806385
    33 of 280 fetuses of mice infected with the bacteria died four days after infection was introduced; 0 of 191 fetuses died in the non-infected group. It’s not a disease to be taken lightly, particularly by people who claim interest in science.

    http://www.ncbi.nlm.nih.gov/pubmed/24754311
    Dermatol Ther. 2014 Jul-Aug;27(4):244-7. doi: 10.1111/dth.12128. Epub 2014 Apr 22.
    Electrochemotherapy as a novel treatment for primary cutaneous marginal zone B-cell lymphomas.
    Abstract
    “In the present study, we describe the use of electrochemotherapy as alternative therapy for primary cutaneous marginal zone B-cell lymphomas in patients unsuitable for surgery or radiotherapy. Our experience refers to three patients with primary cutaneous marginal zone B-cell lymphomas related to BORRELIA BURGDORFERI infection, treated with specific antimicrobial therapy and electrochemotherapy. ”

    Neurogastroenterology & Motility
    Volume 22, Issue 2, pages 113–133, February 2010
    Gastroparesis and functional dyspepsia: excerpts from the AGA/ANMS meeting
    “Gastroparesis might represent an autoimmune response to infection. Five individuals have been reported developing an acute onset gastroparesis: three following vaccination and two after LYME DISEASE.”

    Borrelia arthritis and chronic myositis accompanied by typical chronic dermatitis.
    Brtkova J1, Jirickova P, Kapla J, Dedic K, Pliskova L.
    http://www.rbrs.org/dbfiles/journalarticle_0543.pdf

    N Y State J Med. 1987 Nov;87(11):615-6.
    STILLBIRTH following maternal Lyme disease.
    MacDonald AB, Benach JL, Burgdorfer W.
    PMID: 3480464 [PubMed - indexed for MEDLINE]

    Because of people like the IDSA, this pediatrician, and people such as yourself who continue to support those who suppress evidence, the studies needed for Lyme disease are not taking place in the numbers they should. There is still much to be studied and learned about this bacteria and disease. The IDSA has made an absolute based on little to no scientific evidence in support of their findings and have failed to review all of the evidence available showing the dangers these oversights cause to society. As I said before, you are supporting guidelines, not scientific evidence.

    But it’s good to know you’re a proponent for acne treatment.

    1. WilliamLawrenceUtridge says:

      If the medical community knew all of the studies available, we wouldn’t have a Lyme controversy to begin with. Since you seem to imply that an earlier case is invalid, here is one from 2013 with sources listed at the bottom should you choose to follow up.
      http://www.uvm.edu/medicine/?Page=news&storyID=17496&category=comresne

      Well this is the second time you’ve posted this, so I will repeat my earlier comment. We know Lyme can cause arthritis. This is not a surprise. The controversy with Lyme is primarily about its alleged “chronicity”, not its potential to cause arthritis.

      Two separate analyses presented here at the Infectious Diseases Society of America (IDSA) 47th Annual Meeting revealed that most of the society’s treatment guidelines are based on expert OPINION, nonrandomized trials, and case studies.
      Only about 15% of the guidelines are supported by randomized controlled trials (RCTs), considered the highest level of evidence

      Yes, that’s probably true. But this is not about Lyme disease, this is true of much of medicine in general. It doesn’t invalidate the guidelines, it means you need to improve the evidence base. It also doesn’t mean you get to ignore everything in favor of a preconcieved notion – it means you have to use the best knowledge available, even if that means using preclinical data and yes, expert opinion.

      http://www.ncbi.nlm.nih.gov/pubmed/7806385
      33 of 280 fetuses of mice infected with the bacteria died four days after infection was introduced; 0 of 191 fetuses died in the non-infected group. It’s not a disease to be taken lightly, particularly by people who claim interest in science.

      Yes, that’s great – Lyme is a recognized risk for pregnant mice and women. I have no issue with this. However, this has no implications for chronic “Lyme” and long-term antibiotic use.

      http://www.ncbi.nlm.nih.gov/pubmed/24754311
      Dermatol Ther. 2014 Jul-Aug;27(4):244-7. doi: 10.1111/dth.12128. Epub 2014 Apr 22.
      Electrochemotherapy as a novel treatment for primary cutaneous marginal zone B-cell lymphomas.
      [snip]
      Neurogastroenterology & Motility Volume 22, Issue 2, pages 113–133, February 2010 Gastroparesis and functional dyspepsia: excerpts from the AGA/ANMS meeting
      [snip]
      Borrelia arthritis and chronic myositis accompanied by typical chronic dermatitis.

      These are funny to me. Above you were bashing the IDSA for basing decisions and guidelines on case studies, yet here you are waving about one-, three- and five-person studies…so which is it? Can you trust case studies, or not, or does it depend on whether the case study supports your idee fixee? Also, one is a non-peer reviewed meeting abstract.

      Because of people like the IDSA, this pediatrician, and people such as yourself who continue to support those who suppress evidence, the studies needed for Lyme disease are not taking place in the numbers they should.

      Do you think perhaps the harrassment unleashed by activists against researchers might maybe just perhaps have something to do with it, reducing interest and driving experts out of the field? Do you think maybe having an Attorney General unleashed upon an expert society might maybe exert a chilling effect?

      And again, let’s not mix topics here – the controversy about Lyme disease is really mostly a controversy about chronic “Lyme” disease; actual Lyme disease, not too controversial.

      There is still much to be studied and learned about this bacteria and disease. The IDSA has made an absolute based on little to no scientific evidence in support of their findings and have failed to review all of the evidence available showing the dangers these oversights cause to society. As I said before, you are supporting guidelines, not scientific evidence.

      And the IDSA guidelines are based on what? [drum roll] EVIDENCE! It still sounds like you’re using all of your complaints as excuses because the IDSA didn’t agree to what you wanted them to find. For instance…

      But it’s good to know you’re a proponent for acne treatment.

      Yes, because antibiotics are proven to treat acne safely and effectively. The fact that you think this to be a minor problem is irrelevant to that safety and efficacy.

      Meanwhile, you appear to be advocating for an unproven treatment that can put the patient at significant risk, in the absence of several negative trials. Apparently because you think it is IMPORTANT! Well, may I venture that perhaps it’s not too important to wait for good evidence or ignore the existing evidence?

  30. Borrelia says:

    This study stands in stark contrast to the IDSA guidelines and was completed in 2001 by members who are part of the IDSA. However, the results of the study were held until after the IDSA upheld their defunct guidelines — yes, I smell a rat. The original Lyme disease guidelines have never been changed by the IDSA despite evidence contradicting these guidelines.

    Published: January 11, 2012
    Persistence of Borrelia Burgdorferi in Rhesus Macaques following Antibiotic Treatment of Disseminated Infection
    http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0029914

    This can mean quite a few things: antibiotic use is required for more than the current recommended guidelines; they are not using the proper antibiotics to kill this bacteria; they need to use multiple antibiotics to target and kill the multiple forms this bacteria can morph into.

    There are many other variables, but those are three very important conclusions to consider.

    1. WilliamLawrenceUtridge says:

      People aren’t macaques. HIV is harmless in apes.

      What I’m seeing here is “human studies failed, but JUST LOOK AT WHAT HAPPENS IF WE TREAT MONKEYS!!!” Well…yeah, but the human studies didn’t really work out, did they? There’s a reason we start in animals and test to confirm in humans.

      Has this finding been replicated in humans?

  31. Borrelia says:

    Weing,

    Your point in my referring to the actual evidence available is what? If it were simply my interpretation alone, there would be no Lyme controversy.

    Windriven,

    There is no smoking gun to support the IDSA guidelines. We come to proper conclusions through multiple studies over years of research. I am opposed to the setting up of absolutes thus far in Lyme disease, which means I will not assume that patients are lying or LLMDs are lying, nor can I support the IDSA’s findings. Most LLMDs and patients are not making absolutes regarding Lyme like the IDSA has done. They want the research to be open and continue and for it to be fair and impartial. Currently the scales do tip in favor of Lyme patients and LLMDs. When we allow organizations like the IDSA to go unchecked and their watchdogs to be made up of people from their own organization, impartiality is thrown away and corruption leaks in. Why the IDSA continues to maintain their position when there is little evidence to uphold their position is a mystery to many, but I suspect they are covering their butts. Because physicians have been instructed to follow these organizations, — and no doubt they were worthy of that in earlier years — does not mean they are immune from corruption.

    Lawsuits will abound if they now admit they were wrong. The damage has been done. Fortunately, they cannot stop the science. The truth always comes to light, and it will. It’s just a matter of time.

    1. weing says:

      “I am opposed to the setting up of absolutes thus far in Lyme disease, which means I will not assume that patients are lying or LLMDs are lying, nor can I support the IDSA’s findings.”
      In other words, you assume that the IDSA is lying.

      1. Borrelia says:

        Weing,

        Yes, of course the IDSA is lying because it has set up absolutes in a controversy where the science is still forthcoming and not at all definitive. It’s not difficult to figure out they are lying about the science being there because it isn’t. Lyme patients and their physicians are not saying they have absolutes. They are expecting open discussion to take place and for all sides to come together to resolve the issue, which requires all of the available evidence to be fair and impartial.

        So yes, it is easy for me to say that the IDSA is lying because they, not myself, are the ones who have set up an absolute by claiming that the Lyme bacteria are not persistent and that the current testing and treatment is accurate. We know this is false. The evidence is there.

        You can argue with me about that, but you haven’t got a leg to stand on. If you review the evidence, you will see that the current guidelines are based on a lack of evidence, particularly because they suppressed the worldwide body of evidence available when they created the guidelines.

        But I’m happy to let you know that the science is pushing forward and slowly but surely there are a few members of the IDSA breaking ranks, and even those who were once side by side with these panel members are participating in studies that are proving these guidelines to be ineffective. Paul G. Auwaerter, one of their rank who appeared on Dr. Phil opposing the idea of a “chronic Lyme” was involved in this study which admits that the current antibiotics recommended in the guidelines are not sufficient in the treatment and that there is evidence of persistence of the bacteria even after treatment.

        It’s good to see that within one year someone who was defending these ridiculous guidelines is participating with Johns Hopkins and Bloomberg to present the truth to the public. I have yet to see if he will come full circle, but I’m hopeful because of this study that it means something of his character.

        “Identification of novel activity against Borrelia burgdorferi persisters using an FDA approved drug library”
        http://www.nature.com/emi/journal/v3/n7/full/emi201453a.html

        And yes, I did notice your attempt to try skew what I was saying. If there were evidence in support of the absolutes which the IDSA themselves have set up, then perhaps I could give them as much credence as I give patients and Lyme doctors. Unfortunately, there is evidence available to prove the IDSA’s position wrong. I might note that the guidelines for Lyme disease have never been changed. They remain exactly the same as they did when they were originally made many years ago. With the abundance of scientific studies that have been produced since that time, one has to wonder how it is they could make an absolute in the first place and continue enforcing guidelines that are not up to date with the scientific evidence.

        1. WilliamLawrenceUtridge says:

          I’ll just point out that PTLDS and CLD aren’t really expected to be the same thing, and that many sufferers of CLD have never had any objective evidence of Lyme infection. That’s actually one of the reasons why it isn’t taken very seriously.

    2. WilliamLawrenceUtridge says:

      , which means I will not assume that patients are lying or LLMDs are lying

      Neither patients nor LLMDs need to be lying – merely mistaken. The only one claiming malfeasance is you – on the part of the IDSA.

      Currently the scales do tip in favor of Lyme patients and LLMDs

      Political scales? Yes. Scientific? Not really.

      When we allow organizations like the IDSA to go unchecked and their watchdogs to be made up of people from their own organization, impartiality is thrown away and corruption leaks in

      See, the problem is – you are assuming corruption on the basis of no evidence beyond “they disagree with me”. That’s might be evidence against your beliefs, not against their good intentions.

      Lawsuits will abound if they now admit they were wrong. The damage has been done. Fortunately, they cannot stop the science. The truth always comes to light, and it will. It’s just a matter of time.

      I agree with your final statement, I just find it amusing paired with your first. Because it really looks to me like you’re saying “If the science doesn’t support us, we’ll sue until it does!”

    3. Pierre Carles (PhD) says:

      “I am opposed to the setting up of absolutes thus far in Lyme disease, which means I will not assume that patients are lying or LLMDs are lying, nor can I support the IDSA’s findings. Most LLMDs and patients are not making absolutes regarding Lyme like the IDSA has done. ”

      Another near-perfect statement. I am flabbergasted at the “appointed experts are always right” argument that is opposed to you !

    4. Windriven says:

      “Lawsuits will abound if they now admit they were wrong.”

      Lawsuits abound whenever a class action attorney scents money. It is a fact of life.

      “Fortunately, they cannot stop the science.”

      Who are they and why would they wish to ‘stop the science?’

      The truth always comes to light, and it will. It’s just a matter of time.”

      And I’ve been arguing the same thing. But Borrelia-istas can’t be bothered to actually do the science. It is so much easier to whine abut how hard it is to get funding. Elsewhere in this stream I’ve had an exchange with Pierre Carles about one straightforward experiment, not particularly difficult nor particularly expensive, that might cast real light on CLD. Gather your mob and raise the money. Or apply to NCCAM.

      You really do need to learn some fundamentals of science. There is tremendous difference between saying ‘CLD does not exist’ and ‘there is no convincing evidence that CLD exists.’ One is a strawman, the other a statement of scientific fact. Between the two is fertile ground for exploration for those so inclined.

  32. Borrelia says:

    The link I posted previously to the FDA’s list of individuals harmed by the LymeRix vaccine was the short list. Here is the longer list contained on their site.

    I hope you will read the letters from these patients who were severely harmed by the vaccine. Their lives have changed forever as shown by each of their personal letters written to the FDA.

    http://www.fda.gov/ohrms/dockets/ac/01/briefing/3680b2_17.pdf

    1. WilliamLawrenceUtridge says:

      Why would I read patient testimonials? While these stories might be heart-wrenching, that doesn’t mean the patient is correct about the cause of their suffering. Heart-wrenching testimonials are used by quacks and advocates who can’t make their case with empirical data. While I feel sympathy for these people’s suffering, the fact that they are suffering does not mean that their suffering is caused by the Lyme tick or Bb. You’re simply trying to bias a scientific issue with an emotional appeal, which to me underscores the fact that you are unable to make a proper scientific case.

  33. weing says:

    “So yes, it is easy for me to say that the IDSA is lying because they, not myself, are the ones who have set up an absolute by claiming that the Lyme bacteria are not persistent and that the current testing and treatment is accurate. We know this is false. The evidence is there.”

    They do not claim that the Lyme bacteria are not persistent in PTLDS. They have not found evidence of it. You say the evidence is there. Where is it hiding? Why don’t you show it to them if you have it? The studies you’ve referenced don’t show it either. They only show that it is possible. But you still have to show that in actual patients.

    “If you review the evidence, you will see that the current guidelines are based on a lack of evidence, particularly because they suppressed the worldwide body of evidence available when they created the guidelines.”

    Lack of evidence of what? Lack of evidence of efficacy of treatment of PTLDS in controlled studies? Is that what you mean? What is your evidence of suppression of evidence?

  34. Borrelia says:

    Weing,

    You aren’t a critical thinker. I have no need to argue with you. I can see it’s a waste of time. Those who are truly interested in the science will read the science. The rest sit on their butts and ask me to produce it for them. I’ve already produced several links to not only scientific evidence but patient experiences with the horrendous vaccine. Yes, the IDSA does deny the persistence of the bacteria. If you would do your research, you would know this. But I think you’d argue with a rock pile for the sake of arguing. Enjoy your rock pile.

    1. weing says:

      “You aren’t a critical thinker.”
      Right. Only a critical thinker would accept your assertions/premises without evidence.

      “I have no need to argue with you.”
      By this, I infer you to mean, you don’t want to examine the premises supporting your conclusions? Fine. That’s your choice.

    2. WilliamLawrenceUtridge says:

      You aren’t a critical thinker.

      Heh, irony.

      I have no need to argue with you. I can see it’s a waste of time.

      I’ll believe it when I see it, but please – feel free to waste your time elsewhere.

      Those who are truly interested in the science will read the science.

      Yes, we call them “researchers”.

      I’ve already produced several links to not only scientific evidence but patient experiences with the horrendous vaccine.

      I’ll just point out that you may have provided evidence, but it didn’t seem to be very relevant. It’s more “evidence” than evidence. It did seem to be evidence that you don’t really appreciate how scientific evidence is specific.

      Yes, the IDSA does deny the persistence of the bacteria.

      Oh, great, that’s a clear statement that can be answered easily. Please provide us with a weblink to where the IDSA said this, and ideally let it be after that macaque study.

  35. Pierre Carles (PhD) says:

    I have a question, to which many people here will certainly be able to answer.

    I am a Physics researcher, affiliated both to Université Pierre et Marie Curie in Paris (Paris 6) and to Case Western Reserve University in Cleveland. Although not a MD myself, I have intensely collaborated with MDs in the past on pluri-disciplinar research operations involving mathematical modeling applied to biomedical issues.
    The international community of physicists is considered to be one where the cross-validation standards in experimental science are the highest, a situation that is due mainly to the generally good reproducibility of specific experimental conditions (which is less the case in Biology for instance, and, for obvious reasons, even less the case in clinical medicine).
    The bottom-line of this introduction is clear, I guess: I believe that I am no stranger to the scientific method, to experimental assessment and reproducibility of results, and to cross-validation of “local” results at the international level. In other words, what some people would call Science (in short).

    How come, then, that I find the debate against the so-called Chronic Lyme Disease (or whatever other name) to be cruelly lacking of neutrality ? How come certainty, and not reasonable doubt, seems do be the rule ?
    From my personal exploration of existing literature, there are more than 50 references in existing peer-reviewed literature that DEMONSTRATE cases of PERSISTENT BORRELIA INFECTION in various animal models IN SPITE OF ANTIBIOTICS TREATMENTS. Primates, mice, horses and dogs (among other models) have been shown to sometimes retain symptoms of Bb infection after the proper antibiotics treatment was provided, while post-euthanasy tissues biopsies were demonstrated to bear the DNA signature of Bb after PCR analysis.
    In other words, Chronic (or Persistent) Lyme Disease has been amply documented among animals for more than 20 years now, and it is even a condition that most veterinarians face regularly in the livestock they treat.

    My question to my MDs colleagues is then very straightforward:
    How come that all this science-based evidence of the persistence of Lyme disease in almost all animal models so far does not make the medical community more cautious when asserting that its equivalent does NOT exist in humans ?
    And if the answer to that question is “because existing studies show it”, I will have to cite the recent work published by Brown team led by Allison DeLong (Aug. 19, 2012, in Contemporary Clinical Trials), showing that said studies are actually inconclusive when properly analyzed.

    Thank you for explaining that weird situation to me.

    1. Harriet Hall says:

      I don’t think anyone is claiming that borrelia “can’t” persist in humans. I think we are keeping an open mind until such persistence can be demonstrated and found to correlate with the symptoms people are experiencing. At present, the evidence is lacking, and treatment based on that premise has not been very successful.

      1. Pierre Carles (PhD) says:

        That is a conclusion I can agree with.
        But you will also agree with me if I say that your wording, here, is significantly more balanced than the average sentences that you read most of the time among MDs or in CDC recommendations. The more usual expression is closer to “there is no such thing as CLD” (I have even read that very sentence in this very thread).
        Science-based evidence go against such a firm and definitive conclusion.

        If all analysts of this issue were as careful as you were in their choice of words, I guess that pretty much all conscious researchers would agree on the subject.

    2. Windriven says:

      “post-euthanasy tissues biopsies were demonstrated to bear the DNA signature of Bb after PCR analysis.”

      “How come that all this science-based evidence of the persistence of Lyme disease in almost all animal models so far does not make the medical community more cautious when asserting that its equivalent does NOT exist in humans ?”

      Autopsy is not necessary. Biopsy should be fine. Be a hero and find borellia DNA in chronic Lyme sufferers but not in Lyme victims who have recovered. It isn’t Nobel material but would certainly get you published in JAMA or NEJM or Nature.

      1. Pierre Carles (PhD) says:

        “Be a hero and find borellia DNA in chronic Lyme sufferers but not in Lyme victims who have recovered. It isn’t Nobel material but would certainly get you published in JAMA or NEJM or Nature.”

        Anytime. As a matter of fact, I know several high-profile medical research teams who would be ready to do a systematic exploration of that sort. The problem is that, because of autocratic prescriptions like those you read all over the place in CDC publications or in forums such as this one, it is nearly impossible to raise the necessary funds from national agencies. And turning to the private sector is just as hopeless: if CLD does exist and is indeed due to a persistence of Bb or of a co-infection, chances are that the right mix of old-fashioned antibiotics can cure it. There is no financial incentive to do large-scale research on the topic.

        Meanwhile, veterinarians treat cows with CLD all the time, and hardly wonder wether the cows they treat should undergo a psychoanalysis instead …

        1. MadisonMD says:

          As a matter of fact, I know several high-profile medical research teams who would be ready to do a systematic exploration of that sort. The problem is that, because of autocratic prescriptions like those you read all over the place in CDC publications or in forums such as this one, it is nearly impossible to raise the necessary funds from national agencies.

          How much do you think it costs to run PCR? You could probably bill to insurance. You are saying that this hasn’t been done because it costs $200 and the NIH wouldn’t pay for it? Gee, provide some solid preliminary evidence that your hypothesis might be true, and you should have NIH reviewers excited about your project. Nobody gets NIH grants based on a hypothesis without preliminary evidence (except perhaps at NCCAM?).

          1. Pierre Carles (PhD) says:

            Well, I may be wrong, but your comment suggests that you have very little notion of what it may cost to set up a double-blind randomized protocol of statistical significance to test that hypothesis. The cost of PCR is clearly not the issue, here.

            As for evidence that the base hypothesis might be true, I guess that the demonstrated existence of CLD in several animal models, along with the inconclusive nature of recent studies on humans (see DeLong, Aug. 19, 2012, Contemporary Clinical Trials), are two elements that should make the case a no-brainer for any independent NIH expert.

            1. Windriven says:

              “Well, I may be wrong, but your comment suggests that you have very little notion of what it may cost to set up a double-blind randomized protocol of statistical significance to test that hypothesis.”

              I’d tread carefully here. You are dead flat wrong.

              Chronic Lyme has a vocal chorus militating for “action” and you claim strong prior plausibility in animal models. If you can’t get NCCAM to fund a decently powered RCT employing a “high-profile medical research team,” I’d have to guess it is because you didn’t submit a funding request. Getting NIH money is really, really tough. But have a look at the nonsense that NCCAM funds. It is a low bar Pierre.

              1. Pierre Carles (PhD) says:

                “I’d tread carefully here. You are dead flat wrong.”

                There was such naiveness in the “$200″ comment that I could not believe it was issued by someone with any sort of experience. Or are people around here deliberately using irony instead of getting involved in sound scientific discussions ?
                Then I may have ended up in the wrong place …

              2. Pierre Carles (PhD) says:

                Besides, I still have to read a single debunking of my 2012 reference from Brown.
                Maybe this is because nobody here has the necessary background in statistics to understand it.

              3. Windriven says:

                “Besides, I still have to read a single debunking of my 2012 reference from Brown.”

                A meta analysis showing where “[f]our RCTs met the inclusion criteria” that concluded “Primary outcomes originally reported as statistically insignificant were likely underpowered.”

                Likely underpowered. Well let’s turn the world on its head because of an underpowered meta analysis calling four RCTs underpowered!

                Expanding on my comment to whoa elsewhere, quit bitching and get busy. NCCAM sets a very low bar for plausibility. Give them a try. And there are lots of chronic Lyme rabble out there. Copy the tactics of the American Cancer Society and Jerry’s Kids and March of Dimes; go out and rattle the cups and collect research money. Who the hell are you to claim priority for your pet project demanding that somebody else fund research based on what looks to me like a pretty frigging weak argument? Get in line with everybody else and make the best case you can. Or go raise your own.

              4. Windriven says:

                “There was such naiveness in the “$200″ comment…”

                Naivete? No. Madison was noting that PCR could be done for ~$200. Per subject. In a study with 100 subjects that amounts to the princely sum of $20,000. Now of course there are a variety of other costs – but isn’t that true of every single bit of research that gets done?

                Getting this research done is only as difficult as any other research project. Lyme research isn’t being ‘kept down’ by some bogeyman as Borrelia (the commenter) would have us believe. But neither should it be specially privileged.

              5. MadisonMD says:

                Perhaps I was unclear. Take 5 patients who you believe have CLD, collect their blood, and run PCR. If you demonstrate persistent Borrelia, you are on to something. If not, then either (a) it is not there; or (b) your assay is not sufficiently sensitive. If you have a good assay*, (a) is more likely than (b).

                Cost: $200 per patient.
                If non-CLIA assay (in US), you need IRB approved pilot protocol and $1K.
                If CLIA assay, bill to insurance, no IRB needed.

                No RCT needed. I don’t even know what you would be randomizing– that was extremely unclear. Sure you could enroll controls–and you should if you get some Borrelia+ results, but hopefully you have extensively validated your assay with standardized controls to begin with.

                RCT is the last step of biomedical research for making interventions, not the first step towards establishing pathophysiology of a disease. To think RCT is the first step without even stating what intervention you are talking about seems awfully naive.

                ————–
                *If done properly, PCR can detect single molecules of DNA.

              6. Windriven says:

                @MadisonMD

                As is clear, I envisioned a much larger trial and with controls and blinding. And still the hard costs – say $50k – are pretty minimal. But your point is even better though 5 seems too few. Nonetheless, the point stands: demonstrate the existence of Borrelia DNA in a large fraction of the supposed CLD sufferers and additional funding for further work would seem a cinch.

                As to randomizing, it would seem to me important for the PCR test to accurately sort supposed CLD sufferers from controls naive to the bacteria. But that certainly wouldn’t have to happen initially.

              7. MadisonMD says:

                As to randomizing, it would seem to me important for the PCR test to accurately sort supposed CLD sufferers from controls naive to the bacteria. But that certainly wouldn’t have to happen initially.

                Agree this is a better experiment. This however, is called blinding the observer to the samples. ‘Randomized controlled trial’ is the wrong term to describe this, since a RCT randomizes to an intervention.

                Still I’d want to see just one positive first. Experiments start from clinical observation. This is something Peter Moran has laid out quite nicely on his website, albeit with a focus on cancer.

              8. Windriven says:

                “This however, is called blinding the observer to the samples.”

                Facepalm – with nosebleed. Thank you.

            2. MadisonMD says:

              Well, I may be wrong, but your comment suggests that you have very little notion of what it may cost to set up a double-blind randomized protocol of statistical significance to test that hypothesis.

              Ha, yes funny how you could be so wrong. Somehow you almost recognized it but didn’t quite stop yourself. Anyway, what does this have to do with a RCT? And what would you randomize? Do you think RCT is the only method to do biomedical research?

              My point is:
              (1) Run highly sensitive Borrelia-specific PCR on 5 patients with what you suspect is CLD. And hell, yeah, do the right controls. None of that XMRV stuff.
              (2) If you detect it, then ask the NIH for funding. Perhaps you wish to study mechanisms of resistance to doxycycline. Perhaps you want to gather clinical data on the treatment failure rate. Try to culture Borrelia from the patients. I can’t imagine asking them to fund a RCT because all this is preliminary before having an intervention.

              Oh, and send any B+ patients to an ID specialist with the results since doxy might not be the drug of choice here.

              But without any of that, you are just a physicist with a hypothesis about medicine.

              1. Sawyer says:

                Would a positive PCR even show that a patient still had Lyme disease?

                I’ve heard several times with the ebola outbreak (virus, not a bacteria) that PCR can show DNA segments floating around well after the disease has subsided.

              2. Pierre Carles (PhD) says:

                “But without any of that, you are just a physicist with a hypothesis about medicine.”

                That still makes a better scientist than an MD who thinks a statistically significant RCT study can be performed fo $200 !

              3. Windriven says:

                “That still makes a better scientist than an MD who thinks a statistically significant RCT study can be performed fo $200 !”

                Lying is beneath you. Or should be. That isn’t what Madison said.

              4. Pierre Carles (PhD) says:

                Windriven, that $200 comment was, as I said earlier, the original (and patronizing) rebuttal that was made to one of my own comments/questions. If this was the exact reflexion of what the author really believed, it was unbelievably naive. If it was merely irony, then I believe it should not hold any place in a serious scientific discussion such as the one I was hoping to have here. In both cases, it was a disappointment.

                Either way, I am willing to admit that my own answer was a hasty one, and I am willing to amend it (which I can do only metaphorically, since I have not found a way to edit comments on this board).

                Allow me, however, to state that, as someone who has the necessary background to read most first-hand sources on the subject (and who has), I was expecting to receive answers of a higher intellectual quality than the one in question.
                Besides, unlike many here, I am not shunning the use of my real name, which makes my credential easily checkable. I wish more people here would do the same, when half of the arguments I have read on this thread are mere authority arguments.

                To get back to the original topic (CLD), it always comes as a surprise for me to see how much the medical community uses expressions of absolute, even as their object of study is among the most elusive ones.
                Nobody in so-called “hard science” (where I come from) would dare to be so affirmative as the deniers of CLD here, based on such weak statistical arguments as the ones I have read so far in existing literature. Maybe, one reason for that situation is the general lack of mathematical literacy of most MDs, which prevent some of them from actually grasping the roots of the statistical concepts they are using. Or maybe, it is just a sociological effect, given that the field is so closely related to and dependent from huge money flows and power relationship. To answer that question is a work for social scientists, I guess.

                Still, one could expect people working on elusive material to be overly cautious about their statements, especially when the said statements will have a direct impact on the real lives of real people. Strangely enough, things are truly the other way round, and you find more doubt, caution and open-mindedness among people manipulating 3He or Poly-dymethyl-siloxane than among people dealing with human diseases. Or so does it look, based on the flame wars that the present topic is lighting in the medical community.

                Why that is, is beyond my limited grasp.

              5. MadisonMD says:

                @Sawyer

                Would a positive PCR even show that a patient still had Lyme disease?

                I’m not sure how long Borrelia DNA circulates after the spirochete is eradicated. I would anticipate it would clear fairly quickly. Quantitative PCR is used for similar assays for HIV and HCV viral, so the persistence is probably known…likely measured in days in that nuclease-rich environment. Looks like fetal DNA dissipates in a few days. Anyway, you could control for that since, the CLD hypothesis is (I believe) that some but not all Borrelia is eliminated by standard antibiotics.

                You would need impeccable controls and perhaps sequence validation of amplicons d/t the possibility of false positives.

                @Pierre

                statistically significant RCT study can be performed fo $200 !

                Is RCT the only way to do physics research? Because it is not the only way to do biomedical research. I don’t really how to get that message through to you… perhaps English is not your first language.

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