lyme disease and the lyme denialists

Discussion in 'Lyme Disease Archives' started by tansy, Aug 2, 2006.

  1. tansy

    tansy New Member,0,4365869.story?coll=hc-headlines-oped

    Medical Revisionists Threaten Effective Lyme Treatment


    July 31 2006

    A small group of scientists is turning the world of Lyme disease on its head. They deny the existence of chronic Lyme disease.

    They insist there is no "credible scientific evidence" for persistent infection after a short course of antibiotic treatment because the corkscrew-shaped bacteria that causes Lyme disease, Borrelia burgdorferi, cannot survive this treatment.

    Fearing "over-diagnosis," they publish guidelines endorsing an insensitive testing program that misses half the patients with the tick-borne illness.

    Fearing "over-treatment," they recommend antibiotic therapy barely adequate for acute infection and wholly inadequate for chronic Lyme disease.

    Soon they will publish the latest version of an already restrictive set of guidelines that will further pressure the Centers for Disease Control and Prevention and academic institutions to ignore chronic Lyme disease. The guidelines will encourage insurance companies to embrace up-front cost savings inherent in shorter treatment and deny payment for longer treatment, even if the Lyme patient is still sick but showing signs of improvement.

    Although the Lyme denialists claim support from mainstream medical groups, the reality is that the handful of them have managed to dictate policy to larger health care organizations through a closed process that rejects dissenting views. Unaware of this one-sided process, the rest of the medical industry blindly follows their lead while patients suffer.

    Lyme disease is the most common tick-borne illness in the world. Named after the town where it was discovered in 1975, the disease is transmitted by the bite of an infected tick. Research has demonstrated that the Lyme bacteria is one of the most invasive and elusive pathogens known to man. After causing a telltale "bulls-eye" rash, the bacteria screws its way into multiple organs and tissues to produce often-debilitating muscle, joint, nerve, brain and heart ailments.

    Although New England remains the epicenter of the disease, with up to 20 percent of new cases reported in Connecticut alone, Lyme disease and associated infections are popping up in new locations around the globe. Where you live doesn't accurately reflect your risk of catching Lyme disease because people travel on planes, trains and automobiles, while ticks travel on deer, birds and household pets. As a result, the risk of acquiring the disease is increasing unpredictably.

    We know treatment is effective when instituted early, but fewer than half the people with Lyme disease even remember getting a tick bite or seeing a rash. The resulting infection may spread and become chronic before the victim has a chance to seek treatment.

    Research over the past two decades suggests the key to eliminating chronic Lyme disease is prolonged antibiotic therapy. Lyme-treating physicians recognize this fact and studies support it.

    The Lyme denialists refuse to accept this point of view.

    Imagine if "AIDS denialists" had won out in the early 1990s. Doctors would have refused to prescribe antiviral medications and insurance companies would have refused to pay for them. How many millions of patients would have gone undiagnosed and untreated?

    Sound scary? Welcome to the world of Lyme disease run by Lyme denialists.

    Today many Lyme patients are going undiagnosed and untreated because of the Lyme denialist agenda. Although Lyme disease is usually not fatal, the disability associated with a chronic case is equivalent to congestive heart failure.

    Health care providers, government agencies and Lyme patients must confront the Lyme denialists and fight for better recognition and treatment of Lyme disease.

    Raphael B. Stricker, MD, of California is president of the International Lyme & Associated Diseases Society.
  2. jarjar

    jarjar New Member

    This makes me very mad. Are there organizations that we can join and do something about this?

  3. ajp

    ajp New Member


    Thanks for posting this. My Lyme doctor is coming under fire for his long term use of abx for Lyme patients. I saw him yesterday and he was very upset about this. He is asking all of his Lyme patients to write a letter stating how they have benefited from long term abx(longer than two months.) I can't believe this is happening. He is very knowledgeable about Lyme and has treated thousands of Lyme patients.

    I am happy to write a letter and also told him I would appear in person if it was needed. I am doing so much better being on the Ceftin and the Ketek. I have some of my life back. And I told him that even if I don't get any better than this, it's OK. Because I feel better than I have in years. Still have some pain and fatigue, but better.We think now that I probably have had Lyme for almost twenty years!

    There must be something we can do for these Doctors. I am afraid they may take his license and where would myself and all of his other patients be. There is only one other Dr. in my whole state that treats Lyme and they are not seeing other patients.

    I just find this all so upsetting and it all makes me very angry. Thanks again for posting this. Take care.

    Love Mindy
    [This Message was Edited on 08/03/2006]
  4. dontlikeliver

    dontlikeliver New Member

    You can join the Lyme Disease Association, although they are not really 'activists'.

    Other than that, we the people/patients have to start our own, take our own initiative and do something about it, just like in the early days of AIDS they had to in order to make changes/get media attention in order to get the research, get testing and meds, etc in a 'hurry' kind of situation.

    There is an Activism section on Lyme Net, check in and see how you can help if you're interested.
  5. kalina

    kalina New Member

    Texas residents should check out the Stand Up For Lyme web site (add .org) to get involved. If you don't live in Texas, they have links to other organizations.

    The Lyme denialists already have physicians in our state hogtied.

    Thanks for posting this, Tansy.

  6. tansy

    tansy New Member

    The article below illustrates how determined the chronic lyme disease denialsts are -

    Lyme borreliosis in England and Wales

    Controversies in Lyme borreliosis

    Reviewed on 04 August 2006

    Unorthodox testing

    There are a number of unorthodox tests available in certain commercial
    laboratories that have been proven in independent studies not to be of
    value. One is the Lyme urinary antigen test (LUAT), which purports to
    detect B. burgdorferi antigens in urine from patients with suspected
    Lyme borreliosis. It is very unreliable, with a high incidence of
    false-positive results [1]. Claims have also been made for the QRIBb
    test, a rapid method using fluorescent microscopy to identify borreliae
    in blood and other fluids and tissues. This test has not been properly
    validated [2]. The special medium on which the test is based has been
    assessed by the American National Institutes of Health (NIH) and shown
    that it was not useful and could not support the growth of B.
    burgdorferi. Other unreliable tests include the lymphocyte
    transformation test and unorthodox applications and interpretations of

    Seronegative Lyme borreliosis

    Antibody tests are likely to be negative in the first few weeks of
    infection, but it is very uncommon for patients with late stage Lyme
    borreliosis to be seronegative, unless they received early inappropriate
    treatment, that did not eradicate the infection but could have abrogated
    an antibody response. None of the features of later stage Lyme
    borreliosis is unique to the infection, and the patient’s history should
    be carefully re-evaluated for other diagnostic possibilities before a
    diagnosis of seronegative Lyme borreliosis is accepted [4,6]. Additional
    specialised antibody and PCR tests to look for evidence of B.
    burgdorferi infection may be helpful.

    Chronic Lyme disease / Post Lyme syndrome

    A small percentage of patients may continue to have subjective symptoms
    after appropriate treatment, similar to chronic fatigue syndrome or
    fibromyalgia [5,6]. Their past treatment history should be reviewed and
    they should be carefully evaluated and re-treated if they have objective
    evidence of active infection. Other conditions, infectious and
    non-infectious, may also trigger similar symptoms [7]. A large American
    study showed that the frequency of pain and fatigue was no greater in
    patients who had had Lyme disease than in age-matched controls who had
    not had B. burgdorferi infection [5]. Another study showed that patients
    with post-Lyme syndrome who were re-treated with prolonged courses of
    antibiotics had similar outcomes to those who received placebo for the
    same duration [1]. Such patients are best treated symptomatically rather
    than with prolonged antibiotics, which can be associated with serious or
    life-threatening complications [7,8].

    Information on the Internet

    The web has great deal of material on Lyme borreliosis, but extracting
    medically and scientifically valid information requires much more than
    casual browsing. Some websites give excellent information about Lyme
    borreliosis, but others are grossly inaccurate, promoting potentially
    harmful unorthodox approaches to diagnosis and treatments. Much poor
    quality and potentially dangerous information is readily available on
    the internet [9,10,11]. The best all-round initial sources of
    information include the EUCALB website and the CDC’s home page on Lyme
    borreliosis [10,11].

    Reference list
    1. Klempner MS, Schmid CH, Hu L et al. Intralaboratory reliability of
    serologic and urine testing of Lyme disease. Am J Med. 2001;110(3):217-9.
    2. Caution regarding testing for Lyme disease. MMWR 2005;54(05):125
    3. Halperin JJ, Logigian EL, Finkel MF et al. Practice parameters for
    the diagnosis of nervous system Lyme borreliosis. Neurology
    4. Sigal LH. Anxiety and persistence of Lyme disease. Am J Med
    5. Steere AC. Lyme disease. New Engl J Med 2001;345(2):115-25.
    6. Stanek G, Strle F. Lyme borreliosis. Lancet 2003;362(9396):1639-1647.
    7. Wormser GP, Nadelman RB, Dattwyler RJ, et al. Practice Guidelines for
    the treatment of Lyme disease. Clin Infect Dis 2000; 31 (suppl 1):
    8. Patel R, Grogg KL, Edwards WD et al. Death from inappropriate therapy
    for Lyme disease. Clin Infect Dis 2000;31:1107-1109.
    9. Cooper JD, Feder HM. Inaccurate information about Lyme disease on the
    Internet. Pediatr Infect Dis J 2004;23(12):1105-8.
    10. Sood S K. Effective retrieval of Lyme disease information on the
    Web. Clin Infect Dis 2002; 35(4):451-64
    11. Feder HM. Inaccurate information about lyme disease on the internet.
    Pediatr Infect Dis J 2005; 24(6):578-579.

    Source: Health Protection Agency, UK[This Message was Edited on 08/07/2006]