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Lying Liars and their Lying Lies

Carlyle said “a lie cannot live.” It shows that he did not know how to tell them.

— Mark Twain

There is an infamous hoax from last century called The Protocols of the (Learned) Elders of Zion, an anti-Semitic text purporting to describe a plan to achieve global domination by the Jewish people. Despite the fact that the Protocols is a work of fiction, there have been and still are folks who believe it to be real, from Hitler on down. (Or is that “on up”? Can one be lower than Hitler? And have I already committed a breach of Godwin’s Law?)

Inventing apparently legitimate information is a useful propaganda device not limited to anti-Semites. Having people appear evil or uncaring using their own words is far more effective than calling them evil and uncaring.

There are many in the community who suffer from a variety of complaints that I cannot diagnose, and, as people do not like uncertainty about their health, they will find someone who will give them a diagnosis. Not infrequently they will come upon the idea of chronic Lyme disease.

I do not think that the data supports the concept of chronic Lyme disease, and being a Tool of the Medical Industrial Complex (TMIC®), that is just what you would expect me to say. But despite the paucity of data to support chronic Lyme, there is a contingent of patients and doctors who feel that the disease is real.

In the battle to win the hearts and minds of those who are unconvinced about chronic Lyme, those in favor of the syndrome have several options.

1) They could argue the science. That would be a losing technique as the totality of the published literature is against them.

    I would rather tell seven lies than make one explanation.

    — Mark Twain

    2) They could demonize the opposition. If the speaker is an evil TMIC, then the speaker’s message is evil as well. You are more likely to dismiss the message if you can dismiss the messenger. Certainly anything Rush Gore says is automatically nonsense since Rush Gore is a moron at best and evil at worst. It is a simple and common mental shortcut.

      But doctors still have a degree of respect, deserved or not, in society. I think mostly deserved. Most of the people I work with are caring, compassionate people who work hard for the betterment of their patients. Not all. But most.

      So you can call me a TMIC, but it will not stick most of the time. The process of calling people names can make the caller look petty, especially of they do it without cleverness. I am made of rubber, you are made of glue, what bounces off of me, sticks to you. It is true at 5 and at 50.

      The glory which is built upon a lie soon becomes a most unpleasant incumbrance. How easy it is to make people believe a lie, and how hard it is to undo that work again!

      — Mark Twain, Eruption

      It would be better is to find examples of your opposition being a TMIC and display it for all the world to see. Hoist them on their own petard (a Star Trek reference; you have not enjoyed Hamlet unless you have read it in the original Klingon). What if you can’t find examples?

      That is where you become a lying liar using lying lies. The Internet era makes it easy to rapidly transmit information. What often seems to be lacking is the ability for people to take just a little bit of time to fact check the information they get. People do not bother to double check the truthiness of the information they get. Hoax’s propagate endlessly on the interwebs, ranging from Captain Kangaroo’s war record to Nigerian money transfers. All easy to fact check. It is easier to believe what you read, especially if it supports you prior convictions. And lies are forever.

      One of the most striking differences between a cat and a lie is that a cat has only nine lives.

      — Pudd’nhead Wilson

      PalMD received an open letter from the IDSA about Lyme disease and he thought it smelled funny, and not ha ha funny. More like boiling melana funny. PalMD has a good nose, and a quick email to the IDSA confirmed the letter is a hoax. I am sure that many will get a copy of this letter and be angered at their suffering being called delusional. If I thought I had chronic Lyme and read the tripe that follows, it would fry my bacon. Most will not bother to check the legitimacy of the letter. It is, in a word, a lie.

      A lie can travel halfway round the world while the truth is putting on its shoes.

      — Mark Twain

      What follows is a hoax, lying lies from a lying liar.

      <lie>

      Open Letter to the Mental Health Community from the Infectious Diseases Society of America

      May 24, 2010

      Delusional Chronic Lyme Syndrome (DCLS) affects tens of thousands of new victims every year. This debilitating mental illness is destroying the emotional and financial livelihood of families across our country.

      As the Infectious Diseases Society of America (IDSA), we see firsthand the damage inflicted by this illness. Its sufferers frequently seek medical help from our member’s practices; however, we are powerless to cure its underlying roots, as this mental illness exists well outside our domain knowledge of pathogens and human infection. Therefore, we are strenuously imploring the mental health community to take up research action in earnest. After our Lyme disease treatment review panel concluded last month, it is now indisputably self-evident that DCLS has reached epidemic proportions and its yearly growth rate is alarming.

      The historical duration, demographic breadth, and geographical extent of this mass psychogenic illness is a fascinating and unprecedented event in the history of our country, perhaps in the history of mankind. It has persisted for four decades, affects all ages, and exhibits an intriguing geographic clustering phenomenon. The intensity of its delusions drives sufferers to such extremes as self-mutilation via catheterization and sometimes suicide. Currently, there is no formal diagnostic classification or treatment regimen for DCLS. Meanwhile, this is empowering opportunistic medical doctors to prescribe improper and costly pharmaceutical treatment. This only furthers delays patients from seeking out the mental health professionals they so desperately need. Unfortunately, general awareness within the mental health field is virtually nonexistent.

      As president of the IDSA, I bear some responsibility for this ignorance, by not encouraging more cross-discipline pollination of our medical information. As this crisis has illuminated, the IDSA has not been true to its stated core value to “promote collaboration and cooperation among other professional colleagues.” In response, I passionately pledge to our members and public constituents to reverse this myopic trend within our esteemed organization.

      IDSA member, Dr. Gary Wormser, has been a tireless crusader in promoting awareness of this emerging illness. I owe him immense gratitude for keeping true to his values as a physician in the face of sometimes caustic opposition to his fresh ideas. We beseech mental health researchers to carry on the torch ignited by Dr. Wormser and create pervasive, national recognition for this destructive disorder. By doing so, you will bring hope and compassion to those afflicted by this strange and insidious illness.

      To actualize this crucial transfer of information, the IDSA will be hosting free workshops on DCLS for mental health professionals at our upcoming annual meeting. This meeting will be hosted on October 21st through 24th, 2010 in Vancouver, Canada. We look forward to bringing the mental health community up-to-date on all relevant research and known data for DCLS. For more information, please contact the DCLS workshop coordinator at (xxx) 299-0200.

      Sincerely,

      Richard J. Whitley, MD

      </lie>

      If only those were real HTML tags.

      The most outrageous lies that can be invented will find believers if a man only tells them with all his might.

      — Mark Twain

      Posted in: Health Fraud, Medical Ethics, Science and Medicine

      Leave a Comment (51) ↓

      51 thoughts on “Lying Liars and their Lying Lies

      1. “We beseech mental health researchers to carry on the torch ignited by Dr. Wormser and create pervasive, national recognition for this destructive disorder. By doing so, you will bring hope and compassion to those afflicted by this strange and insidious illness.”

        Wow, that really, really doesn’t sound like an open letter from any professional society I’ve ever read. Have you or PalMD sent it to Snopes yet? That’s where I always check when I get a funny email.

      2. Love the Mark Twain by the way.

      3. ErikD says:

        First off – as micheleinmichigan says, you guys should get this to snopes, urbanlegends, et. al. immediately so that there’s at least an easy source for people to check to disprove it. Won’t correct the problem, but will at least help mitigate it.

        Second – to my eyes, this actually does look like something that might have started within the infectious disease community — as an inside joke. It’s a really strange thing for chronic lyme believers to have put together, but it makes perfect sense as a sly expression of frustration by an ID professional frustrated by hordes of patients self-diagnosing on the internet. I imagine a fed up doctor kicking this out after work one day and sending it to a colleague…who forwards it to another until it gets out onto the web without any context. The chronic lyme folks get a copy and think they’ve got a smoking gun.

      4. Mark Crislip says:

        I had not considered that interpretation , since it mentions two docs by name and gives the IDSA phone number and dates of the national meeting. Seems too much effort to be a bitter joke.

        Maybe the writer will send me an anonymous letter letting us know why it was written.

      5. Chris says:

        A recent Skeptoid podcast was about Morgellens Disease, and how it is related to mental stress. While I do enjoy Skeptoid, I think Dunning can be very blunt. Oddly enough, he was actually a bit more sensitive and nuanced in this podcast.

        He did not say the sufferers had a mental illness (like that letter does), but that psychogenic conditions are very real. It looks like an area one has to tread very carefully in (and try not to give out lots of antibiotics). Their pain is very real and should not be dismissed.

        We recently lost a family member due to suicide. She had a history of chronic migraine headaches. As we went through her considerable belongings we came upon a collection of daily appointment books going back almost thirty years. In each book she chronicled anniversaries of not only memorable events (birthdays, deaths, etc), but also any illness or pain she experienced.

        She wrote in the anniversary of the onset of the chronic migraine, when she broke a foot, when she had Lasik surgery… etc, etc. But not things like when she first met her fiance, and then when she broke up with him. Or when she went psychotic and ended up in the county psyche ward for six weeks.

        Plus she daily entered every little ache and pain she had that day.

        Okay, to me… that cannot be healthy. Even though I have broken more bones than she did (including the one caused by a car accident that landed me in the hospital for three days) the only medical anniversaries I remember are my kids’ birthdays!

        The thing is she was really in pain, just like those who have Morgellons Disease. Constant pain does in itself cause mental problems, and that should not be ignored.

        The thing is that the seriousness of psychogenic pain needs to recognized and properly addressed. Our relative really wanted to find a medication to relieve her pain, when perhaps some other method would have been more appropriate. Just like those with Morgellons want to have antibiotics relieve their symptoms when it may be better to do something else (like relieve their stress).

        Our relative’s happiest and healthiest time in her last ten years was her last week in the psyche ward. They actually made her go for walks, and talk to them… along with taking medication. I know that for years at family gatherings when she complained about constipation she would glare at me when I suggested she go on walks to help get things “moving”, and yet this is the stuff the “evil” county medical staff made her do.

        Unfortunately, when she was released… the mental health support ended. She moved to Oregon to get away from the family who kept reminding her to keep up the habits fostered by the county psyche ward. Only to end up in another state’s county psyche system. They offered her an out patient service that she refused to participate in.

        I do not know what the answer is to those who suffer real pain from psychogenic causes is… other than ignoring it is not the answer.

        Despite reading her daily planners, I will never understand our late relative. I don’t get migraines, and on days I have head aches due to sleep deprivation (like today), I do not record them… and hope that I just get a good night sleep (stupid hot flashes!).

        But I think that mental health services should be supported. Not just drug therapy, but access to good talk therapy should be encouraged. In an ideal world a person should not have to make the effort to go to a clinic, the therapist should actually visit the patient. But that does not happen if they are not a danger to society.

        Le sigh… it is just too complicated.

      6. sophia8 says:

        I have an acquaintance – let’s call him Roger – who for years insisted that he had chronic Lymes. Unfortunately, he had a doctor who went along with the nonsense.
        Then the doctor retired, and the new, young, doctor refused to play along. So Roger argued with him, argued with the hospital consultant, eventually ended up arguing with a top neurological consultant, who patiently showed him that all his GoogleU-derived “facts” were wrong or unsupported. But that didn’t change Roger’s mind – all the doctors were wrong and only he and his fellow Lymes sufferers all over the internet knew Teh Truth.
        At the same time, his marriage was falling apart and he started getting arrested for domestic violence. After the third arrest, he was given the choice between counselling and goal time. So he chose the counselling (along with a divorce).
        The counselling really did make a difference to his attitudes – he was helped to see where the roots of his anger, frustrations and pain really lay. So, eventually, he accepted that he didn’t have Lymes, probably never had it.
        Instead, he know tells everybody that he has CFIDS and fibromyalgia. And he still takes a basketful of prescribed medications, including stuff for depression.
        So I really don’t know what’s the answer for people like him, who appear to need pain and suffering – he doesn’t miss an opportunity to mention his ailments.

      7. windriven says:

        Who is Rush Gore? Is he what you get if Rush Limbaugh and Al Gore breed? (the thought makes me want to wash my brain out with soap).

      8. owen says:

        The IDSA website ( http://www.idsociety.org/ , unfortunate web address, by the way) has the following bulletin posted on its front page:

        Spam, phishing e-mails referencing Lyme disease 05/25/2010

        IDSA has been alerted to a hoax in which an e-mail appears to have been sent by IDSA’s president on the topic of Lyme disease and mental health. If you receive an e-mail like this, please delete it immediately. The hoax is connected to a website that claims to have been endorsed by IDSA. This is a hoax, and IDSA is investigating the matter and will take appropriate steps.

      9. hehe, now that sounds like an official letter. :)

      10. daedalus2u says:

        This is very disturbing. These people are not helping and they are not interested in helping. My guess is that they were trying to set PalMD up, sending this to him thinking (via projection because that is what they would do) he would write it up in glee, that here is a whole conference devoted to DOP by a different name, and then they would say “gotcha”.

        It didn’t work, and won’t work because PalMD’s goal is not to win any internet arguments just for the sake of winning, but rather to do right by his patients, actual or virtual, as is the goal of all good health care practitioners. Doing right means getting a reliable diagnosis to determine a reliable treatment via reliable processes. The key to all of this is reliable, an unreliable diagnosis is worse than no diagnosis.

        I think that all of these somatiform disorders have the same root cause, low NO/NOx status. I discuss the disorder called Morgellons on my blog.

        http://daedalus2u.blogspot.com/2008/02/morgellons-disease-hallucinatory.html

        I think that calling the symptoms psychogenic is incorrect and unfortunate in that because of the stigma associated with mental health disorders, people refuse any treatment they consider to have a psychiatric component (although all treatments do, the effectiveness of a good bedside manner is mediated via psychogenic processes). I see the itching of Morgellons as being due to high mast cell sensitivity, which may be ameliorated by SSRIs, which seem to work in the itching of liver failure which I think is due to the same mechanism.

        The sensory systems that detect injury and transmit signals of pain to the CNS are complex and not well understood. The system that does that is distributed, that is there are local sensors, nerves that transmit those signals, and neural networks that interpret those signals and produce an output. For such a system to work together “in sync”, it must be regulated to work together “in sync”. An extremely important part of any such system has to be automatic “gain” control, that is the various systems must be regulated (in real time) to keep the entire system in the “active range”, where it can produce and transmit differential signals to allow the organism to perform differential actions based on those differential signals.

        One of the generic systems for automatic “gain” control is via the NO level. In the peripheral tissues, low NO increases the sensitivity and so increases the “gain”. For example mast cells are made more sensitive to degranulation by conditions of low NO. The gain in the immune system is increased by low NO, the initial respiratory burst of immune system stimulation causes local low NO which increases the “gain”.

        In the CNS, it is high NO that increases the “gain”. The sensitivity of different brain regions to neuronal activation is increased by NO, that is why there is nearly a 1-to-1 correspondence between the vasodilatation observed in fMRI and neuronal activity. The high NO levels that cause the observed vasodilatation also cause increased neuronal sensitivity resulting in increased neuronal activity in those regions.

        Under conditions of fight or flight, there is a systemic lowering of NO/NOx levels. This increases the sensitivity of peripheral systems to pain, so that injury signaling is better. There is also a change in CNS processing of pain, endorphin signaling modulates the pain signaling so that only the most severe injuries are noticed, and the pain signals do not overwhelm cognitive capacities to deal with those pain signals while you are doing more important things (like running from a bear).

        I think this is why many of the symptoms of Morgellons mimic the symptoms of drug abuse withdrawal/drug abuse withdrawal. Itching of the skin is a symptom of cocaine, alcohol, opiate, amphetamine abuse/withdrawal. I suspect that the drugs of abuse reduce the “gain” in the CNS, so the body responds by increasing the “gain” in the peripheral systems. When the drug is withdrawn and the “gain” in the CNS goes back up, then the “gain” in the peripheral system is too high and so everything hurts until the automatic “gain” control resets itself. The time it takes for that to happen is called “withdrawal”.

        If the “gain” in the peripheral system is too high because of low NO in the peripheral system, then the only way to fix it is by reducing the “gain” in the peripheral system. Decreasing the “gain” in the central system with opiates will only work until the body resets the “gain”, otherwise known as “tolerance”.

      11. joanne60 says:

        ‘I do not think that the data supports the concept of chronic Lyme disease’

        That is the problem it is people thinking without experiencing or practising.

        Thankfully my GP considered Lyme Disease after 5 doctors and 3 rheumatologists had taken 4 years to diagnose me. ( I had actually thought it could only be caught in the USA) She treated me on long term antibiotics and I am nearly 100% well. No pain, no arthritis or muscle weakness no peripheral neuropathies or dysphagia. Having been retired early on ill health grounds I can again cycle and garden. Not science but good enough for me and my doctor including a doctor I eventually saw who specialises in Lyme Disease here in the UK.

        Read the detail of the IDSA final report the truth is in that detail and also read the presentations by ILADS to the IDSA in detail found on their website http://www.ilads.org

        The IDSA in their report dismiss the considerable body of research made available to them because they were not Randomised Placebo Controlled trials. What madness. The only 4 RPCT’s done were discussed at the review and if anything indicated that patients symptoms did improve on longer treatments but deteriorated when treatment ended, much as my own experience. The longest trial was only 6 months thank god my GP did not stop treating me then.

        We who seek doctors to treat us for chronic symptoms following Lyme Disease do actually include quite a number of doctors and their families so hardly just a bunch of misguided fools as you and the IDSA are suggesting.

        If treatment clearly improves symptoms and they deteriorate when treatment stops it really doesn’t matter if science has proved why, of course we are going to seek treatment.

        Please read the information I suggest and also Daniel Cameron’s response to IDSA on Chronic Lyme Disease does exist.

        http://www.hindawi.com/journals/ipid/2010/876450.html

        or better still go and shadow one of the Lyme Doctors for a couple of weeks through Turn the Corner foundation and then see how you ‘think’.

        As to the rest of your post on the e mail there will always be hoaxers in any walk of life, but we can’t tar a whole group with the same brush.

      12. Harriet Hall says:

        Joanne60 said “If treatment clearly improves symptoms and they deteriorate when treatment stops…”

        Believe it or not, there are plenty of instances where a bogus treatment seems to do that too. Such apparent correlations can be due to a combination of conditioning, expectation, and placebo response. The only way to rule out these confounding factors is a controlled study.

      13. I’m sorry, just for future reference or maybe other readers would like to know. What would separate regular Lyme disease from chronic Lyme disease. If it is only that chronic Lyme disease does reappears after antibiotic use, what differentiates it from an antibiotic resistant form of the bacteria?

        A reliable link would be appreciated.

      14. Scott says:

        That is the problem it is people thinking without experiencing or practising.

        Experiencing and practicing are not reliable sources of evidence. Only rigorous science can address the question, and the rigorous science comes down firmly against the existence of “chronic Lyme”.

        What would separate regular Lyme disease from chronic Lyme disease. If it is only that chronic Lyme disease does reappears after antibiotic use, what differentiates it from an antibiotic resistant form of the bacteria?

        There aren’t actually any bacteria present in “chronic Lyme”, for one thing.

      15. daedalus2u says:

        I think it is called “chronic Lyme” if the usual treatment for Lyme disease doesn’t make it go away, and if none of the tests for Lyme disease show that Lyme disease is present.

      16. Harriet Hall,

        Don’t some antibiotics also have a nonspecific anti-inflammatory effect that could lead to symptom improvement without any infectious agents being present? Could that account for some of the clamouring for never-ending antibiotic prescriptions?

        daedalus2u,

        Ooh, I like that definition!

      17. Mark Crislip says:

        antibiotics also have a nonspecific anti-inflammatory effect

        that would me macrolides and tetracyclines

      18. I just googled “chronic lyme tetracycline macrolides” and got this quote:

        “These results are in line with our experience that the tetracyclines and macrolides achieve the greatest success.”
        from the Canadian Lyme Disease Foundation: http://www.canlyme.com/donta.html

        By “These results” he does not mean “nonspecific anti-inflammatory effects,” unfortunately.

      19. joanne60 says:

        Harriet Hall
        I think my two treating doctors are in the best position to see my symptom response and make decisions over placebo or anti inflammatory affect.

        Both these excuses are trotted out parott fashion and while there clearly is the undisputed possibility of antiinflammatory and/or placebo one has to be dealing with the patient to make such decisions.

        At the start of my antibiotic treatment I was on a fairly high and longstanding dose of steroids given for another possible diagnosis, once antibiotics were started I had no problems reducing the steroids which had been a big problem prior to starting the antibioitcs. I understand the antibiotic that I responded to is not one that is considered to have an anti inflamtory affect and even if it had then I am sure the steroids antinflammatory affect would have been far greater than any an antibiotic could have. As to placebo I think the many months of treatment response each time antibiotics were increased reduced stopped and started would have rather negated a placebo affect.

        Time you did some serious research on this illness and stopped pontificating on something you are clearly not knowledgeable about.

      20. joanne60 says:

        Scott
        Yes if there was rigorous science done we might get somewhere dealing with all these thousands of patients with chronic symptoms after a lyme disease infection. sadly those with the research grants are only interesting in pushing their opinions which interestingly have changed and now deny their earlier research according to Steere at IDSA review he has changed his OPINION, not that the science has changed.

        ‘There aren’t actually any bacteria present in “chronic Lyme”, for one thing.’

        Sorry there are plenty of case studies that show persistent infection following antibiotic treatment in humans. Also studies in mice that show evidence of the infection after treatment.

      21. Harriet Hall says:

        joanne60,

        I’m not offering excuses: I’m pointing out how patients and doctors can be led to falsely conclude that an ineffective treatment works. That’s why we do science.

      22. Okay, so I had a few minutes. We are talking about symptoms that are similar to Lyme’s but where patient’s test negative for Borrelia burgdorferi antibodies? http://www.labtestsonline.org/understanding/analytes/lyme/test.html. I’m assuming they have tested negative on a general ANA and been run through the other auto-immune disease gammit and someone has also decided against a CFS or FM diagnoses and chosen Chronic Lyme Disease.

        You know, somewhere in one of my books, I remember some advice for coping with undiagnosed chronic symptoms, I will have to dig it up and post it, since it seems very applicable to this and some of the other situations discussed on SBM.

      23. Scott says:

        Yes if there was rigorous science done we might get somewhere dealing with all these thousands of patients with chronic symptoms after a lyme disease infection. sadly those with the research grants are only interesting in pushing their opinions which interestingly have changed and now deny their earlier research according to Steere at IDSA review he has changed his OPINION, not that the science has changed.

        There HAS BEEN rigorous science done. You just don’t like the results. (see, e.g., PMID 19562015).

        Sorry there are plenty of case studies that show persistent infection following antibiotic treatment in humans. Also studies in mice that show evidence of the infection after treatment.

        Everything I’ve seen has only ever shown antibodies, which is a very, very different thing. (PMID 19711595, 17578771) If you think such evidence exists, feel free to cite it. (The citations I’ve given were just from the first page of hits on “chronic lyme infection”, so it’s not exactly hard.)

      24. weing says:

        The one patient I have with this diagnosis has positive IgG only and is still being treated with an antibiotic.

      25. daedalus2u says:

        I think that all antibiotics can have non-specific anti-inflammatory effects mediated through a Jarisch-Herxheimer reaction when gut bacteria are killed by the antibiotic. The debris from dead bacteria is very immunogenic, it stimulates the immune system, causes expression of iNOS, the iNOS raises the NO level for a day or so, that NO acts as an anti-inflammatory agent.

      26. On the anti-inflammatory effects of antibiotics – I guess the question I have would be do these antibiotics have an anti-inflammatory effect that generally surpasses or is different than NSAIDS.

        From my experience with going to the doctor for muscle, joint, tendon pain (without fever, joint heat or swelling) is that the first thing they prescribe or recommend is Motrin or Aleve or I think I have a bottle of something that might be a combination of both, Nambumetone. If the question is inflammation, why would the antibiotic work and the NSAIDS fail?

      27. daedalus2u says:

        The mechanisms are different. Most NSAIDS work by inhibiting the cyclooxygenase enzyme that makes prostaglandins. Prostaglandins are pro-inflammatory, but in kind of a local and wimpy way. Steroids like prednisone are much more powerful and turn off production of just about every kind of pro-inflammatory cytokine. NSAIDS turn the immune system down in the short term, steroids turn it off.

        NO regulates the immune system. NO regulates the cyclooxygenase enzymes that make prostaglandins, and also the cytochrome P450 enzymes that make steroids, and also the enzymes that make superoxide at the site of inflammation. A lot of the regulation of the immune system is to maintain the “right” balance of NO and superoxide in the different tissue compartments. Inflammation can be thought of as what happens when there is insufficient NO to balance the superoxide (it is somewhat more complicated than this, but so is everything).

        I think that is how conditions that are called “chronic Lyme” (Morgellons, chronic fatigue syndrome, and other somatiform disorders) occur, by a dysregulation of the balance between NO and superoxide. Very often they start with a serious infection, often one that is intercellular (like Lyme and Q fever), the infection is cleared by antibiotics, but the natural basal NO level is not restored (this is my hypothesis and is not universally or even generally accepted … yet ;). Physiology then enters a chronic low NO state where there is insufficient mitochondria biogenesis (causing CFS) which results in mitochondria being pushed to a higher potential where they make more superoxide perpetuating the low NO state. In the brain, the low NO state causes low ATP, which is what causes the “brain fog”, by the same mechanism that caused the neurological symptoms of neurosyphilis, chronic neuroinflammation. This shows up as white matter hyperintensities in an MRI.

      28. daedalus2u – I’m sorry, you completely lose me when you start talking NO. I’m sure your comments are more targeted to those who understand biochemistry, but, sadly, I do not have sufficient science to differentiate between your explanations and the average SCAM explanation. I suppose this is why non-plausibility arguments often fail with laymen (like me). It all just starts to seem equally mysterious to me at a certain point.

        I think I was thinking something along the same lines as you, though (without the NO and…you know, science) A while back, I read about pain syndromes that seem to be triggered by a virus and or traumatic injury/surgery, but continue on after the virus was gone or healing had occurred. I read that some specialists (neurologists?) theorized that something had happened that the nervous system had habituated sending the pain signals and continued on past the time when there was any real stimulation.*

        Also, obvious auto-immune diseases are a dysfunction anyway, so I wondered if in some cases the auto-immune response just “forgot” to stop after the bacteria was gone. This was why I was curious if there was evidence of Lyme antibodies.

        Then I started getting really stupid and wondering if this was the case, did the antibiotics do something to signal the immune system to ease-up thereby offering some relief. This was based on my experience with Hashimoto’s. My doctor told me that thyroid hormone replacement sometimes help shrink thyroid nodules, possibly because they thyroid is no longer working so hard to produce thyroid hormone.*

        Of course, if there is no evidence of actual auto-immune problems in what is being called Chronic Lyme Disease, my teetering construct of a idea collapses*.

        Why I am wondering all this? I don’t know, it’s a slow day, my son’s home from school and “Trouble” and “Candyland” are not very mentally entertaining. Clearly, I’m completely out of my league.

        *It’s possibly I’ve got this completely wrong.

        *I may also have this wrong.

        *Like a sandcastle built at low tide.

      29. keleton says:

        I’ve known several people who I believe became addicted to narcotics, probably unintentionally at first when they got some pills for a good reason then developed “chronic pain” followed by all sorts of unverifiable “illnesses’ – chronic lyme, fibromyalgia, CFS, I’ve even heard lupus though that doesn’t make sense because that is real and can be diagnosed. In every case they have had no trouble finding doctors to dispense dangerous quantities of morphine, fentanyl (in the form of Actiq or liquid), phenobarbital (cited to be for rapid heart rate caused by the stress of the pain), and many other drugs – One friend’s brother tragically overdosed on his brother’s liquid fentanyl. The person to whom it was prescribed had taken to injecting it sub-cu rather than taking it orally because he said it made him nauseous. How do doctors that prescribe like this get away with it? Don’t they have to answer to the DEA for their precriptions for controlled substances?

        When a person has been taking narcotic painkillers long term, am I correct that it diminishes their own endorphins/enkephalins ability to bind to the receptors, perpetuating the pain cycle and making it worse than it was before the narcotics were taken? Is there a way this rebound pain can be relieved to help these patients get off their drugs? Forgive my crude knowledge, I have only taken some community college level biology classes so far.

        @ Chris, way up there (and sorry for the OT post everyone else)

        First I’m not trying to tell a sob story – just sharing as a living person who has been through something similar to what it sounds like your deceased relative experienced. You might never be able to understand what your relative went through but as a sufferer of migraines I can. I am finally stable enough to function due to a cocktail of meds and the help of numerous headache specialists, but it took many years. I nearly landed in the psych ward more than once and I’ve been suicidal with pain several times.

        The practice of keeping records of pain was something my doctors insisted on even though I found it very discouraging and was not very compliant with. My point is that it may not have been just a symptom of her mental illness. Enough pain for long enough time can drive anyone insane.

      30. KB says:

        micheleinmichigan: You were asking for a link to tell the difference between Chronic Lyme and regular Lyme earlier, in case you haven’t found it yet here’s one: http://www.idsociety.org/lymediseasefacts.htm

        I think the problem with Chronic Lyme is that it’s like Morgellons in that a lot of the sufferers probably have a real disease, it’s just not all the same one. Here’s a trailer for a pro-Chronic Lyme movie, where a lot of the people look like they have very different diseases: http://www.youtube.com/watch?v=sxWgS0XLVqw Their symptoms can be somewhat similar to real Lyme, or they can not. I think it’s even listed as a cause for autism.

        There’s also the problem, much like testing for heavy metals in autistic kids, of “special labs” that do “special Lyme tests” that get positives in people who “have the disease” but can’t seem to be able to get a positive test at their local hospital’s lab. I don’t know if it’s sloppy handling or using a different test that’s bound to get false positives. There was a “Mystery Diagnosis” episode where this girl has severe pain and two negative Lyme tests until she finds a doctor who takes ten blood samples, sends them to a lab across the country, and got one positive result back. Then she went on long-term antibiotics. I used to really like Mystery Diagnosis too…

      31. KB – thanks for the link. I have a better picture now. I should have thought to search for the ID society website, but I was too busy with my sandcastles apparently.

      32. tcw says:

        BTW, Mark Twain said not to publish his autobiography until 100 years after he was dead, and 2010 is 100 years. I’m not going to read it, though.

      33. kdv says:

        Did the person/people who wrote this hoax really mean to refer to their beloved DCLS as a “mass psychogenic illness”? Or did they just read the term somewhere and decide to use it without actually checking what it meant?

        Don’t tell me. I think I already know.

      34. I-IV-V says:

        “conditions that are called “chronic Lyme” (Morgellons, chronic fatigue syndrome, and other somatiform disorders)”

        I don’t mean to hijack this thread, but this comment by daedalus2u brings up a question I feel deserves to be asked. Neurally Mediated Hypotension is a symptom not specified in the CDC’s Fukuda criteria for CFS, but it is included in the Canadian Consensus criteria.

        Is NMH as a result of an abnormal result on a tilt-table test a common characteristic of somatoform disorders? I’d be curious to see any publications that support this, if you know of any you could link to. Thank you.

      35. daedalus2u says:

        I-IV-V, that is a very interesting question and I am looking for stuff on it. I am pretty sure the answer is yes, but whether the research has been done is not something I know yet.

      36. Suraky says:

        The Lymers are trying to become active in Vancouver BC, running misleading radio advertisements telling you to go to them if you just aren’t getting the help you need from the medical establishment.

        It’s just another pathetic example of a god of the gaps / argument from ignorance. I don’t know what this is … therefore Lyme.

      37. daedalus2u says:

        I have looked into it, and it is pretty clear that the tilt table test shows neurally mediated hypotension in fibromyalgia, systemic sclerosis, obesity, nonalcoholic fatty liver disease and quite a few other things. These also correlate with reductions in heart rate variability.

        There is a pretty strong association of somotiform disorders and sexual abuse, particularly of rape.

        http://jama.ama-assn.org/cgi/reprint/302/5/550

        This is not unexpected to me. The archetypal stress response is to lower NO levels. NMH is associated with reduced NO in the peripheral microvasculature.

        http://circ.ahajournals.org/cgi/content/full/112/17/2611

        What is quite interesting is that increased peripheral resistance seems to be a generic effect of age.

        http://jap.physiology.org/cgi/content/full/96/6/2333

        Which implies that a major correlation with aging is low NO in the peripheral microvasculature.

      38. heatherkeena says:

        Reading this entry and ensuing comments was emotionally upsetting, it’s 1:30 in the morning, and I’m exhausted, so I’m in no place to respond logically and rationally.

        Don’t you understand that as scientists and medical doctors the trait you must strive most to embody, the tenet by which you must live each moment, approach each question, every patient, is humility? What a complex and awesome organism the human body is. How can you genuinely believe that ‘science’ as we know it today can neatly explain every conceivable disease, pathogen, bodily malfunction, biological process? The unknown is too vast. We can only ever learn more, open further to possibility. No human-derived answer is ever final. We do not speak the word of God.

        Open your hearts. Open your minds. Chronic infection with B. Burgdorferi is not only possible, the bacteria has in fact been cultured alive and active after prolonged onslaughts with high-dose antibiotics. Tell me, why do you (the mainstream medical community) accept that tuberculosis takes a year to treat, HIV is treated indefinitely, but lyme patients are good to go with two weeks of doxycycline, no matter how physically debilitated they might be?

        THINK.

        http://www.chroniclymechallenge.com/in-defense-of-true-science.html

      39. Mojo says:

        I do not think that the data supports the concept of chronic Lyme disease, and being a Tool of the Medical Industrial Complex (TMIC®), that is just what you would expect me to say.

        Hang on, why would a TMIC® say that? Surely they love chronic conditions because they can continue selling the sufferers treatments. If all the conspiracy theories about “Big Pharma” suppressing cures and deliberately making their customers ill in order to make money out of them are true, then the last thing they’re going do is to to pass up on a nice profitable chronic condition.

      40. Calli Arcale says:

        heatherkeena:

        Don’t you understand that as scientists and medical doctors the trait you must strive most to embody, the tenet by which you must live each moment, approach each question, every patient, is humility? What a complex and awesome organism the human body is. How can you genuinely believe that ’science’ as we know it today can neatly explain every conceivable disease, pathogen, bodily malfunction, biological process?</blockquote

        I completely agree; one must never become convinced they know everything. Test everything.

        Chronic infection with B. Burgdorferi is not only possible, the bacteria has in fact been cultured alive and active after prolonged onslaughts with high-dose antibiotics.

        You tell people to strive for humility and to accept that they do not know everything — and then you turn right around and ask us to accept an extraordinary claim without any evidence? I thought you just said we should be humble, and we shoudl not believe that we know all there is to know about disease. Yet here you are, not humble, and claiming you know the truth about this disease.

        Do you think only scientists, doctors, and skeptics need to be humble and accept their limitations, and that this does not apply to you? Because, after all, you already know the truth — why would you need to question it? Can you not see the contradiction there?

        I’ve seen that sort of attitude frequently among those who don’t really understand what it means to have an open mind, or what humility is, or what science really is. You seem to think that having an open mind means accepting whatever you say at face value. But that is not how it works.

        The point of science is the humility to understand that your most cherished ideas could turn out to be wrong, and so it is your responsibility to subject them mercilessly to testing. You believe chronic lyme disease exists; are you humble enough to put that to the test? Is your heart and mind open to the possibility that there may be more to the story?

        Surely, if you are as humble and open-minded as you want us* to be, you must have some sort of evidence of your claim? It’s easy to say that the bacterium has been detected in people who have completed Lyme treatment, months or years later. It’s another to back up the claim. Do you have a citation?

        * I am actually neither a doctor nor a scientist. But I think I’m still in the group that you’re talking to, because I am a skeptic.

      41. Calli Arcale says:

        Argh; HTML fail. Sorry about the blockquotes.

      42. weing says:

        “Chronic infection with B. Burgdorferi is not only possible, the bacteria has in fact been cultured alive and active after prolonged onslaughts with high-dose antibiotics. ”

        While I know that chronic infection is possible, I have not seen any evidence of positive cultures after being treated with standard regimens of antibiotics. If you have such evidence, please show us. I have no problems accepting TB requires such prolonged treatment because of documentation of positive cultures and not claims of such.

      43. heatherkeena says:

        you don’t need to convince me that chronic/late-stage lyme is real – it nearly took my life five years ago. the legitimacy of chronic lyme infection is something i know from experience; and despite what you might claim, experience is valuable, stretches far beyond what the scientific community too often dismisses as ‘anecdotal evidence.’

        while i know for a fact that late-stage lyme is real, debilitating, life-destroying, and sometimes deadly, i don’t understand the mechanisms behind it. it is one of the most complex and multifaceted diseases known to humankind, replete with multiple infectious organisms (not just Bb), suppressed immunity, detoxification issues; the list is endless. i’m amazed that i’m still alive, truth be told. both the disease itself and the body’s ability to withstand a decades-long internal war leave me speechless, awestruck.

        http://www.ilads.org/lyme_research/lyme_articles9.html

        http://www.annals.org/content/104/6/798.short

        we need more studies. the longest study thus far involved patients given three months of parenteral antibiotic therapy; the conclusion, as i’m sure you’re aware, was that the therapy proved ineffective. however, three months of antibiotics, IV or not, is woefully inadequate in treating a deeply entrenched, persistent, neurological Bb infection. much longer studies must be conducted. sadly, because of the controversy surrounding this disease and those in the professional community who hold views like yours, the necessary monies to fund such trials are scant.

        do you deny the legitimacy of persistent, tertiary syphilis? there is copious evidence in the medical literature that if left untreated, syphilis travels to the brain, nervous system, heart, joints. no bodily organ is spared; the syphilis organism is a spirochete, which by its very (corkscrew-shaped) nature is built to drill deep into whatever bone and tissue it can find.

        spirochetes are notoriously difficult to both culture and kill. they’re intelligent organisms, adept at evading both antimicrobial therapy and the host’s own immune system. they exist in multiple forms: active, cyst, cell wall deficient. the latter two forms are virtually undetectable.

        all of this is known in the world of syphilis, has been known for decades. Bb is also a spirochete, and it operates in much the same manner as the syphilis bacterium, except it is even more difficult to detect and eradicate, more intelligent, more virulent, with significantly more DNA. meaning: tertiary/late-stage/chronic lyme disease is much more dangerous & debilitating than its syphilitic counterpart.

        in time, your theories will be proved incorrect, a relic of the past. there will be no denying the existence of persistent, antibiotic-resistant Bb infection.

        “All truth passes through three stages. First, it is ridiculed. Second, it is violently opposed. Third, it is accepted as being self-evident.”

        ~Arthur Schopenhauer

      44. heatherkeena says:

        on the contrary, mojo, big pharma profits greatly from denying chronic lyme disease. if a patient is told they no longer have lyme, or never had it in the first place, to bad, get out of the office, they are left to try and mitigate their symptoms as best they’re able. this means, of course, lifelong prescriptions for pain medication, anti-depressants, anti-convulsants, stimulants, sleeping medication, etc, etc, etc.

        remember that adequate treatment for chronic lyme is not lifelong. it may take years in the most difficult cases, but the patient reaches remission eventually and is able to discontinue antibiotic/antimicrobial treatment.

        the insurance companies, of course, are left with the fattest pockets in the systemic denial of chronic lyme. they cover no more than a month of treatment (at most), citing the IDSA guidelines as reason for withdrawing coverage. lyme treatment is expensive. IV therapy, in particular, is ridiculously cost-prohibitive. patients, then, must pay for their treatment almost entirely out-of-pocket. insurance companies are happily off the hook.

      45. Harriet Hall says:

        heatherkeena,

        Your analogy with tertiary syphilis is flawed. It can be prevented with a single shot of penicillin given within a year of the original infection. Once established, tertiary syphilis can be effectively treated with 14 days of penicillin.

        Your experience has convinced you that chronic Lyme disease is real, but experience is notoriously unreliable as a guide to objective truth. Dr. Crislip has reminded us that “in my experience” are the three most dangerous words in medicine.

        All truth passes through stages? Untruth also passes through stages. It is proposed, supported, spreads widely, is demonstrated to be wrong, is tenaciously held onto by passionate believers, but is eventually rejected. Time will tell which category chronic Lyme falls into.

      46. heatherkeena says:

        syphilis can be ‘prevented,’ as you say, because, again, the organism is MUCH less virulent than Bb. by far.

        time will tell, indeed. how would you feel if you or a loved one had cancer and so-called medical ‘authorities’ argued that your very real, very debilitating, very frightening, life-altering, potentially fatal disease did not exist?

        i don’t know how you people can sleep at night, or look yourselves in the mirror each day.

      47. weing says:

        Again you only make claims and don’t give any evidence except that we should believe your claim. Sorry. I need evidence not some made up claims. You say it’s been cultured but then you don’t back up the claim. That’s BS. I claim that you are a liar and my evidence is that you said Bb has been cultured from chronic Lyme patients but you did not support it. I have more sound reasons to believe my claim than your testimony.

      48. KB says:

        If I had cancer and some quack told me I had chronic Lyme, treated me with expensive antibiotics I paid out of pocket for, and let me wait too long to get real life-saving medical treatment, I’d be pretty upset. Personally.

      49. Harriet Hall says:

        heatherkeena,

        No one would suggest that cancer doesn’t exist, and no one is suggesting that your symptoms don’t exist. The only question is whether they are due to Lyme disease and whether prolonged antibiotic treatment is the cure. True compassion involves trying to figure out the truth and find the best treatment via science-based medicine. We worry that if we accepted chronic Lyme disease unquestioningly, we might have prematurely reached a false conclusion and subjected our patients to ineffective and potentially harmful treatments, or we worry that we might have missed the real diagnosis and lost the chance for truly effective treatment. Do you ever worry about such possibilities, or are you absolutely certain of your diagnosis and treatment?

      50. heatherkeena says:

        absolutely certain: i know my body well and unquestioningly. without treatment for lyme and coinfections (including holistic/alternative care) i would be dead. that is no hyperbole: at the point of my diagnosis i was bedridden, unable to care for myself, unable to comprehend or communicate simple sentences, unable to digest food, unable to read or write or watch a simple half hour television sitcom. today, though not well (i relapsed two years ago after nearly two years of remission), i live on my own, walk at least a mile each day, take public transit in a new town (i moved cross country seven months ago), write poetry, volunteer, work very part-time. i’m still in heavy-duty treatment – again, both allopathic and alternative – and have a long way to go before i reach remission again and sustain it, but i thank god every day for my healthcare providers, who are the kindest, most concerned, genuine, brilliant, investigative doctors i’ve ever known. (and yes, they both had the disease you say does not exist, and they are both well today after treating said “imaginary” disease.)

        without my treatment i’d either be dead, or a vegetable wasting away in a wheelchair somewhere. i wouldn’t be me. i wouldn’t be here.

        this is the end of my communication with you. my health is much too precious to waste energy arguing with the same closed-mindedness that nearly cost me my life.

        ps. i never said Bb was cultured from (human) chronic lyme patients. it’s been cultured from mice and dogs following abx tx, however.

      51. Calli Arcale says:

        heatherkeena:

        you don’t need to convince me that chronic/late-stage lyme is real – it nearly took my life five years ago. the legitimacy of chronic lyme infection is something i know from experience; and despite what you might claim, experience is valuable, stretches far beyond what the scientific community too often dismisses as ‘anecdotal evidence.’

        You misunderstand our questions: we aren’t doubting your conviction at all. We aren’t asking you to convince yourself; we are asking you to convince *us*.

        Experience is indeed extremely valuable. It is also what is known as “anecdotal evidence”. This does not mean it is dismissed; it means it has inherent limitations that must be accounted for.

        Anecdotal evidence tells me that the Sun goes around the Earth. Rigorous scientific analysis of the data, including data which is very laborious to obtain, says otherwise. Anecdotes are valuable; nearly ever scientific endeavor starts with one. But if an anecdote is all you have, you will never convince anyone.

        But then, your intent doesn’t appear to be to convince us. It seems to me you’re really just looking for validation. I’m afraid this isn’t a very good blog for that, because here our minds are open. We are curious. We ask questions. That can be quite uncomfortable if you are not used to it, but please understand that it is not meant as a personal attack. You are convinced that you have/had chronic Lyme disease, based entirely on your own personal experience and knowledge of your body. I am not going to question your knowledge of your body, or your personal experience. But I will point out that we are not privy to your personal experiences. That’s why they aren’t useful in convincing us. All we have is the word of someone we don’t really know, and I’m sorry, but that is not sufficient.

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