Thursday, April 22, 2010

IDSA abandons Chronic Lyme patients

In its final report released today, the IDSA's Lyme Disease Review Panel has concluded that no pressing changes need be made to the 2006 Lyme guidelines. The IDSA has tragically failed the Lyme community in this determination. Citing a lack of controlled trials and high-quality clinical studies, the Panel placed little value on the extensive submissions by the International Lyme and Associated Diseases Society (ILADS) and other supporting information.

This excerpt from the final report provides a good summary of the IDSA's position:

"This conclusion [i.e. that there is no significant benefit to long-term antibiotic therapy] was reached despite the large volume of case reports, case series, anecdotes, and patient testimonials reviewed that attested to perceived clinical improvement during antibiotic therapy. Such evidence is by its nature uncontrolled and highly subject to selection and reporting biases. In many published case reports patients did not receive initial Lyme disease therapy consistent with the current standard of care, so it was impossible to be sure that shorter duration therapy had failed. In some cases the diagnosis of Lyme disease was doubtful based on clinical presentations consistent with other illnesses. Some patients were abnormal hosts and not representative of the general population. Many reports included patients whose diagnosis was made before the implementation of the CDC recommendation for 2-tier serological testing, and were therefore based on less stringent criteria. Finally, caution should be used in extrapolating results from European studies to North American patients, due to the well-established microbiological and clinical distinctions in Lyme borreliosis on the two continents."

The IDSA has missed an opportunity here. Rather than foster an environment in the medical and research communities where perceived gaps in information might reasonably be filled, the IDSA has adamantly cemented its position that Chronic Lyme does not exist. In spite of the IDSA, these gaps in information are gradually being filled. But how many lives will be destroyed in the meantime, while we are constrained by inadequate diagnostic tools and physicians who are for all intents and purposes discouraged from using their clinical judgment. We can speculate who is served by this report. It most certainly is not the best interest of patients.

If you can bear to read it, you can download the final report in its entirety or access it online from the IDSA website. The IDSA welcomes your comments.

The Connecticut Attorney General's Office has already issued a brief statement indicating it "will carefully and comprehensively assess the final report". Look forward to that. In the meantime, you can let the AG know what's on your mind by email.

This is a sad day indeed.


    Here is a statement on the IDSA site "At the request of the Attorney General, the Panel also reviewed a statement in the guidelines’ executive summary concerning diagnostic testing. The Panel was evenly split on whether the statement would benefit from modification or clarification. In its final report, the Panel offered this guidance to clinicians: “Symptoms that are commonly attributed to chronic or persistent Lyme, such as arthralgias, fatigue, and cognitive dysfunction, are seen in many other clinical conditions and are, in fact, common in the general population…???????.( Do you really believe this is a fact and if it is the general population is really sick. could they all have Lyme???) It would thus be clinically imprudent to make the diagnosis of Lyme disease using these non-specific findings alone.” On the other hand, the Panel said, “in clinical practice, the presence of certain classic complications of Lyme disease such as aseptic meningitis, AV nodal block, inflammatory arthritis, and cranial or peripheral neuropathies, in a patient with epidemiologic risk of Lyme disease and in whom alternative diagnoses have been excluded or are unlikely,( I thought that Lyme is easily treated???) may be sufficiently convincing as to constitute an exception to the statement in the Executive Summary.???????”
    Sound pretty nasty to me. This being said How is it that no changes were made.
    The American Red Cross is not accepting Blood from Chronic Lyme cases and will not take blood from those who have been treated for Lyme until they have been off treatment for a year. Does that tell the IDSA something is wrong with their guild lines????Northern Ohio
    Blood Services Region
    Lyme Disease
    Accept persons with Lyme disease if they were treated, the disease resolved and at least 1 year has passed.
    Those with chronic Lyme disease are not eligible to donate blood." !!!!!!

    The IDSA admits the Europeon strains are chronic and they are different strains??? They admit that Lyme sufferers have many sypmtoms " Baker has sympathy for people suffering from the pain and fatigue associated with chronic Lyme disease.
    "These people are suffering from something and no doubt they need proper medical care," he said. "But they are not suffering from a persistent infection that can be treated by long-term antibiotic therapy. They have something serious that needs to be treated, but it's not due to Lyme "
    that need to be treated.????

    Red Cross is smart about being unwilling to accept Lyme tainted Blood.

  2. (Here is a comment from the IDSA ) "Finally, caution should be used in extrapolating results from European studies to North American patients, due to the well-established microbiological and clinical distinctions in Lyme borreliosis on the two continents."( Is the IDSA saying the Europeon Lyme is Chronic and our's is not?? Have we even had a study done on this???
    Our Lyme sufferers in Manitoba have more nuerological symptoms and therefore Canada should not be linked to the IDSA Guildlines!!!!!!)

    Elizabeth Wood 204-373-2495


    seems to be the answer - it's a stabalized antibiotic from garlic and has done clinical trial, I like the testimonials

  4. How do you get tested properly for Lyme Disease? I have been to my family doctor numerous times describing symptoms of lyme disease and he has only sent me for testing that is non-conclusive. I have numerous symptoms of the disease and the doctors I have seen in Manitoba don't seem to believe it could possibly be Lyme Disease. When I was first experiencing symptoms I was diagnosed with mono - that was in 2008 - and my symptoms haven't gone away since, and I am experiencing more and more symptoms as time goes on. I have even had the tick mark. Who can I contact to have this looked into further before it becomes untreatable?