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As the saying goes, “Just because you’re paranoid doesn’t mean someone isn’t out to get you.”  Sometimes, practicing out of the conventional medicine mainstream, you can feel like someone’s out to get you, or at least that you’re Alice in Wonderland.  Nowhere is this more obvious than when treating chronic Lyme disease in one of my patients.Chronic Lyme disease is a diagnosis that doesn’t even exist for much of medicine.  The fact that there’s plenty of information on the chronic nature of Lyme, that lots of patients have symptoms that are attributable to Lyme and get better with antibiotics, and that the tests are positive in many of these patients doesn’t seem to convince a lot of doctors who are set in their ways.  So no surprise that the Infectious Diseases Society of America IDSA) has been caught Lying about Lyme.  That’s right, the Attorney General of Connecticut has brought antitrust action against the IDSA because their recommendations ignored the evidence that chronic Lyme disease exists and should be treated.   And, in the course of that investigation, it turns out that all sorts of improprieties on the part of the Infectious Diseases Society lead to their decision. Listen to this quote from the report:

IDSA sought to portray a second set of Lyme disease guidelines issued by the American Academy of Neurology (AAN) as independently corroborating its findings. In fact, IDSA knew that the two panels shared key members, including the respective panel chairmen and were working on both sets of guidelines at the same time — a violation of IDSA’s conflicts of interest policy.

The resulting IDSA and AAN guidelines not only reached the same conclusions regarding the non-existence of chronic Lyme disease, their reasoning at times used strikingly similar language. Both entities, for example, dubbed symptoms persisting after treatment “Post-Lyme Syndrome” and defined it the same way.

Now the IDSA is being made to go back and revise their recommendations, and to include independent investigators in their decisions.

This is an important finding for all sorts of reasons.  One, it will help the process of educating doctors about chronic Lyme disease: its diagnosis, its treatment and its prevalence.  Two, it shows that the government can play a consumer advocacy role in a positive way.  Three, it rips the cover off of the world of seedy relationships between physician groups, insurance groups and academic institutions.  Hopefully, this will make it harder in the future for these relationships to stand in the way of good medical care

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4 Responses to “Lying about Chronic Lyme Disease”

  1. on 23 Jun 2008 at 7:22 pm marylou clark

    Thanks for the info. Did have documented Lyme Disease about 1985, and have had recurrent knee pain and other joint paint since.

    Am interested in more info on low thyroid. Have used Armour’s Thyroid off and on for many years, preferring that over the synthetic kind. Wondering about the dosage, now on 90mg. after taking 120. Feel more tired but could be due turning 74 this year, still teaching.

    Thank you for your work.

  2. on 24 Jul 2008 at 3:11 pm Jennifer Marsh

    .I think it is very important when patients get a positive in the first testing for Lyme disease or equivocal. That when the second tier of test are run and it comes back negative. The doctors need to be careful not to miss that this person may still have Lyme disease. That their immune system may be just to weak or, current treatment may cover this illness that patient has received. It is important to make sure that Lyme disease is not ruled out because patients are different and their genetics are different. This person may truely have it and be sick.

  3. on 24 Jul 2008 at 3:12 pm Jennifer Marsh

    Looking for any one suffering with a weak immune systom and just struggleing to get well.

  4. on 24 Jul 2008 at 3:14 pm Jennifer Marsh

    I think Dr. Rothfeld has changed my health care around and stepping out of conventional medicine and really seeing the patients needs.
    Thank You

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