Jun 09 2009

Chronic Lyme Disease

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14 Responses to “Chronic Lyme Disease”

  1. stompsfrogson 09 Jun 2009 at 11:16 am

    ha ha, you’ve attracted this ad from google:


  2. Karl Withakayon 09 Jun 2009 at 11:55 am

    One problem regarding enacting laws to set specific standards of care is the problems it could cause with research studies. If a standard of care is established by law, (without scientific support for said standard) to what extend does that “legal” standard of medical care apply? Are researchers required by the Helsinki Declaration, to consider that standard of care in research?

    If a law was enacted to say that long term antibiotic therapy shall be the standard of care for conditions conforming to the commonly accepted definition of chronic Lyme disease, does it become unethical to run a study of patients diagnosed with CLD in which one group does not receive long term antibiotics?

    Another problem is that CT is establish a standard of care for a condition they are not really defining.

    The CT bill is essentially a blank check for any licensed physician to treat any patient with long term antibiotic therapy so long as they diagnose the patient with CLD.

    “Lyme disease includes an infection that meets the surveillance criteria set forth by the National Centers for Disease Control and Prevention, and other acute and chronic manifestations of such an infection as determined by a physician, licensed in accordance with the provisions of chapter 370 of the general statutes, pursuant to a clinical diagnosis that is based on knowledge obtained through medical history and physical examination alone, or in conjunction with testing that provides supportive data for such clinical diagnosis. ”

    The bill establishes Chronic Lyme Disease as a legally recognized medical condition (in CT), and sets the minimum criteria for CLD diagnosis as being “as determined by a physician…based on knowledge obtained through medical history and physical examination alone”, not even as determined by a physician in accordance with or subject to accepted medial diagnostic criteria.

    It is interesting to note that the bill, as far as I can tell, provides legal protection for prescription of long term antibiotic therapy for CLD diagnosed patients, but does not specifically provide legal protection for the making the diagnoses of CLD.

  3. Dr J In Trainingon 09 Jun 2009 at 12:11 pm

    So I could set up shop in CT, charge an outrageous out-of-pocket fee to see a patient, then charge their insurance for any antibiotic I feel is appropriate (Zyvox!! PICC lines for all!). And I am legally protected from censure by my medical society?

    Best. Law. Ever.

  4. Steven Novellaon 09 Jun 2009 at 12:11 pm


    The law does not establish a standard of care, it just exempts practitioners from being held to the standard of care when prescribing antibiotics for CLD.

  5. Steven Novellaon 09 Jun 2009 at 12:27 pm

    Dr. J – your comment is likely tounge-in-cheek, but you better believe that is exactly how every unethical charlatan will react to this law. If you build a haven for quackery, the quacks will come.

  6. Karl Withakayon 09 Jun 2009 at 1:33 pm

    I realize that this law does not legally establish a standard of care, the first part of my comment was mostly a hypothetical question regarding potential future legislation carrying the idea a step farther.

    The CT law does, however, legally establish legal recognition in CT of Chronic Lyme Disease, (don’t think the CLD community won’t latch onto that as validation of CLD) and establish a legal diagnostic criteria for CLD as “as determined by a physician…based on knowledge obtained through medical history and physical examination alone”

  7. Elisheva Levinon 09 Jun 2009 at 2:26 pm

    Steven, you are right in citing the same kind of politics for cure claims in autism, and for other health issues.

    Even if the Lyme Disease science were “settled” (as it were!), what is a state legislature doing passing laws about how doctors should treat patients. Treatment is not a matter of law (except in the case of obvious malpractice that infringes on the life and well-being of the patient). Legislators are not physicians nor are they medical researchers, and they ought not to be enshrining any treatment–even the most simple–into law.

    Currently, many of us who live with or care for family members who have chronic illnesses must deal with insurance company bean counters approving or disallowing certain treatments based on issues other than the cutting edge science.
    In CT, the legislature is setting itself up to enshrine a practice into law that is already changing, as you pointed out.

    How much worse will it be when we have Congress doing the same thing as part of a Nationalized Health Care system. It’s coming. And dealing with my state’s DMV for my handicapped sticker, I am not looking forward to the national version of the DMV handling my medical care.

  8. RickKon 09 Jun 2009 at 2:30 pm

    This is an inappropriate response to the Lyme issue, but it’s still a nasty little disease. The woodlands of the Northeast, being free of just about critters that are poisonous or physically dangerous is a wonderful place for kids to play and learn about nature.

    Except for the damned ticks.

    I know a score of people who’ve had mild lyme, and a couple that got to the Bell’s palsy stage. But even worse is the fact that Lyme is making people afraid of nature (or more afraid than they already were).

    Instead of kids running around the woods, we have neighbors insisting their kids stay on permethrin-coated lawns. Piles of fall leaves, once a source of wonderful childhood entertainment, are now treated like toxic waste.

    We don’t spray our lawns – I just can’t stand the idea of killing every insect, frog and snake in our yard. But we do use permethrin spray on shoes and pants, and every summer night we go through the ritual of the “tick check”. I motivate each of my girls with rich cash rewards for every tick picked off her sister.

    Whatever happened to the vaccine? I had two of the three courses before they pulled it from the shelves. Given the affluence of many of the Lyme-infected areas, I’d think an effective vaccine would be profitable even if it only applies to a limited population.

  9. tnkrbellon 10 Jun 2009 at 3:38 am

    Perhaps there is more to this situation then you are aware of considering that the CT Attorney General was forced to intervene here. They did just finish an investigation into wrong-doings with respect to ISDA guidelines for Lyme disease. That entire panel was found to be implicated in wrong doings including monetary dealings with insurance companies and a whole lot more. The whole panel was fired, allowing for new unbiased guidelines to be created (hopefully it will be unbiased anyway).The link for that press release is: http://www.ct.gov/ag/cwp/view.asp?A=2341&Q=414290

    This whole “American “ISDA/antibiotic situation has put a real damper on research and treatment in the US and Canada. Fortunately there is lots of research going on elsewhere where a totally different view of this disease exists.

    Here’s a bit of background on the bacteria responsible for Lyme disease (necessary info when making an informed opinion):
    The spirochete is the form of Bb (the Lyme disease pathogen) that we are all used to hearing about but there are still 3 other forms of Bb. The latter 3 include cystic (L-form), cell wall deficient (CWD) and bleb form (which I am still learning about). Many of today’s antibiotics work by destroying a bacteria’s protective cell wall. When these types of antibiotics are administered during Bb infection, the Bb spirochete quickly transforms into an alternate form and becomes dormant thus causing a clear reduction in and possibly even elimination of symptoms. This behavior actually occurs when any unfavorable conditions for the Bb occur within the human body. Once antibiotics are stopped, these bacteria will revert back into spirochete form and resume their attack on the body. It is unclear at this point (when looking through current research papers) how long these alternate forms can survive without changing back to spirochete form. Perhaps with extended antibiotic regimes it is possible to wait out that survival period [1], [2], [3], [4], [5].

    Long term antibiotic regimes are used for many other illnesses such as urinary infection, leprosy, tuberculosis and even acne and what about antibiotics that are freely and routinely fed to our livestock etc? No-one is making a fuss about this.

    As for the four categories, this list appears to be more indicative of a lack of a “gold standard” test then an admission of guilt. The current test methods were actually created only for epidemiology studies and were never intended for use in patient diagnosis. There are reports of test accuracy being anywhere from 35% to 70% depending on who you ask. Gold standards are at least 95% accurate. That is a far cry from the max of 70%. So basically what this means is that even if a person has Lyme disease there is a pretty big chance they won’t get a positive test result [6].

    The western blot test involves looking fragments of the spirochete proteins. The other 3 forms of the Bb bacteria do not shed the same proteins and thus may not be detected in these tests. Further, there are several different strains of Bb. The only sure way to know whether Bb is residing in your body is to culture your blood/tissue using specialized methods within extended periods of time. These cultures would then need to be viewed using either dark – field microscopy, ESM, or TEM. Then they would actually be seen floating around (costs lots of $$).

    In one study 47 patients were tested using western blot and ELISA. Of these 47 patients only 55% were considered to have a positive result by the CDC criteria. However, when these samples were viewed through microscopy and MAB, all were proven to be positive [6].

    There is so much more to this disease than what meets the eye. Recent research discoveries have shed light on much of the confusion regarding chronic lyme disease and treatment regimes.

    And by the way Multiple Sclerosis has been implicated with Lyme disease on many an occasion [7], [8], [9], [10]

    [1] “Position paper. Spirochete round bodies, Syphilis, Lyme disease & AIDS: Resurgence of “the great imitator”?”, L. Margulis, A. Maniotis, J. MacAllister, J. Scythes, O. Brorson, J. Hall, W. E. Krumbein, and M. J. Chapman. Symbiosis (2009) 47, 51-58

    [2] “Persisting atypical and cystic forms of Borrelia burgdorferi and local inflammation in Lyme neuroborreliosis” J Miklossy, S Kasas, A Zurn, S McCall, S Yu, P L McGeer. Journal of Neuroinflammation (2008) 5:40 doi:10.1186/1742-2094-5-40

    [3] “Morphological Variation: Survival Strategy of Spirochetes” (A Compilation of Research Based Evidence)

    [4] “Cell-Wall-Deficient Bacteria” TSJ Elliot, PA Lambert, The Lancet (2001)Vol 357 Issue 9271 p 1185 doi:10.1016/S0140-6736(00)04991-6

    [5] “A life cycle for Borrelia spirochetes?” MacDonald AB, Med Hypothesis (2006)

    [6] “A Proposal for the Reliable Culture of Borrelia burgdorferi from Patients with Chronic Lyme Disease, Even from Those Previously Aggressively Treated” S. E. Phillips, L. H. Mattman, D. Hulinska, H. Moayad, Infection 26 (1998) 364-367

    [7] “ Association between multiple sclerosis and cystic structures in cerebrospinal fluid”
    Brorson O, Dept. of Microbiology, Vestfold Sentralsykehus, Tonsberg, Norway, Infection 2001 Dec;29(6):315-9

    [8] *”Lyme Borreliosis and Multiple Sclerosis: Any Connection? A Seroepidemic” Jolanta Chmielewska-Badora, Ewa Cisak, Jacek Dutkiewicz, Ann Agric Environ Med 200;7(2):141-3

    [9] “Spirochetal cyst forms in Neurodegenerative disorders, …hiding in plain sight”, Alan B. MacDonald, MD, St. Catherine of Siena Medical Center, Department of Pathology

    [10] “New aspects of the pathogenesis of lyme disease”, Zajkowska JM, Hermanowska-Szpakowicz T, Przegl Epidemiol. 2002;Suppl 1:57-67

  10. [...] response to my post yesterday on Chronic Lyme Disease, commenter “tnkrbell” raised some new points that will take more than a brief comment to [...]

  11. AnnotatedSnarkon 10 Jun 2009 at 12:10 pm

    The link the first commenter mentioned is (typically) amusing yet disturbing (http://www-lymedisease.com/).

    For $39 this guy’ll sell you the secret of how to cure your Lyme disease by consuming four simple ingredients from your local supermarket!

    I dread to think how many quackery websites out there have already evolved beyond being so easily recognized as such simply by looking at the font choices and the page arrangement (even before reading a word of the mind-boggling bullshit).

    Notice, if you will, under the graphic images of bull’s-eye rashes, the inspiring proclamation “Take Action Today – And You Could Be Free From Lyme Disease Symptoms By undefined”. It might be my particular ad-blocking settings that prevent the guy’s Javascript from replacing “undefined” with a date 72 hours from today, or maybe my screen doesn’t support the display of ploys beyond a certain resolution of cheesiness…

    Dr. Novella – how can you sleep at night and ignore an avenue of research that _guarantees_ a symptom-free life for only $2.92 per 3 days (before the credit crunch, I assume)?

    Ever generous, the guy even divulges that two of the four ingredients are salt and vitamin C. We can safely assume the third is Love – any ideas about the fourth?

    Admiring how early in the morning you must wake up,

  12. birdieon 17 Jun 2009 at 11:53 am

    All of this is very frustrating. There is no middle ground. On one side you have the expressed need for antibiotics and the other side expresses the damage due to prolonged use… but nobody is discussing alternatives. One side against the other… that is a happy little arrangement for progress.

  13. Steven Novellaon 17 Jun 2009 at 1:05 pm

    Birdie – sometimes, there is no middle ground. There is no middle ground between evolution and creation, for example.

    But I disagree that nobody is discussing alternative. If you read the research, the scientists are saying that antibiotics do not seem to be the answer, so we need to investigate other approaches, and they are.

    But regarding this question – the science is what it is. We can’t settle this through compromise, we can only listen to the science.

  14. Shagbarkon 17 Feb 2013 at 8:20 pm

    There are numerous red flags about the IDSA Lyme guidelines.

    - First is the simple fact that tens of thousands of patients were diagnosed with Lyme, had the symptoms of Lyme, were treated with the prescribed course of antibiotics, got better, then relapsed and again had the same symptoms that led to being diagnosed with Lyme, and again tested positive for Lyme. The IDSA guidelines pretend that this never happens, by the simple expedient of not making reference to any of the studies showing these results.

    - If you review the literature, you’ll find that all the evidence indicates that antibiotics can make Lyme asymptomatic but cannot eradicate the infection. There have been at least 5 histological studies of Borrelia species in various animal models, and all of them that showed that a full course of antibiotics does not have any impact on the survival of Borrelia in tissue. I repeat, /no impact/, no change in the percentage of subjects with the bacteria in their tissue before and after treatment, in every tissue, in 5 studies. Most studies of Lyme patients indicate that around 15% of patients relapse after a full course of antibiotics. In numerous cases these patients have been later proven to still have Lyme via PCR or microscopy. Wormser et al. simply refuse to cite any of these studies.

    - Lyme is a spirochete. It can live inside cells where it does not generate an antibody response detectable by ELISA, and it can convert to a cyst form that is unlikely to generate an antibody response. We already know, from many studies, that using antibiotics such as doxycycline and amoxicillin (the two most-frequently prescribed for Lyme) kills mainly Borrelia that are not in the cyst form, and causes them to convert to the cyst form for the duration of treatment. Just do a pubmed search & you’ll find many references on this. There is no reason to expect an ELISA blood test followed by a Western blot to give positive results for someone with chronic Lyme.

    - All of the claims that there is no chronic Lyme come from 3 groups: Allen Steere’s group, Wormser’s group in NY, and Auwaerter’s group at Hopkins. These guys only ever refer to each others’ papers, and they have chaired all the panels on Lyme disease treatment, and kept out anyone who doesn’t agree with them. Just check the Wikipedia entry on chronic Lyme and look at the names on all the references claiming it doesn’t exist.

    - The modus operandi of all their papers is the same: Take the ridiculous CDC 2-step ELISA/Western test, claim that it is 100% accurate, and use it to argue that other tests are inaccurate because they sometimes come up positive. Auwaerter has a new paper out that looks at a cohort of patients who have symptoms of Lyme, and have been shown to have Lyme using synovial-fluid immunoblot testing (and some by PCR!), and then notes that these patients tested negative via blood immunoblot testing. Instead of arguing that the blood immunoblot doesn’t work, he argues that PCR and synovial fluid immunoblots give mysteriously-high false positive rates in patients who claim to have chronic Lyme! I am not making this up. Clinical Vaccine Immunology doi:10.1128/CVI.00383-12, “Misdiagnosis of late Lyme arthritis by inappropriate use of synovial fluid” etc.

    - The original paper that many of them now rely on to establish that ELISA testing is 100% accurate in diagnosing Lyme is Steere 2008, “Prospective study of serologic tests for Lyme disease”, http://cid.oxfordjournals.org/content/47/2/188.full.pdf . This article claims to have shown that 100% of patients with neurologic, cardiac, or arthritic symptoms can be detected with the CDC 2-tier test (table 3). But page 189 of that paper says, “A serologic result positive for > burgdorferi by ELISA and Western blog was required for case inclusion.” In other words, the paper being cited as proof that the CDC test works, proved that 100% of Lyme patients who are already known to test positive on the 2-tier test will test positive on the 2-tier test. I’m not making this up either.

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