Why the IDSA Lyme guidelines must be rewritten

On April 3, 2009, the Infectious Disease Society of America (IDSA) will close its public submission period for input into the scientific evidence on the diagnosis and treatment of Lyme Disease. After this deadline, the guidelines review process will proceed as follows:

"A panel of eight to 12 physicians and scientists will be assembled to review and critically appraise the literature on Lyme disease. The panel will also consider data and other information submitted to IDSA and will hold a public hearing where individuals may present data to the panel for consideration. At the conclusion of this process, the review panel will evaluate whether each of the recommendations in the 2006 guidelines is supported by the scientific evidence and will make a recommendation to IDSA as to whether its 2006 guidelines should be revised or updated. Any proposed recommendations shall require a supermajority of 75 percent or more of the total voting members of the panel."

Over the weekend I reread the 2006 IDSA Lyme Guidelines, and I must state emphatically that these biased medical guidelines must be rewritten as soon as possible, for the sake of our nation’s health and our reputation in the worldwide scientific community. Over the past decade, two opposing camps have emerged in the battle over this tick-borne illness. One camp is represented by the Infectious Diseases Society of America (IDSA), led by a group of academic researchers. This group maintains that Lyme disease is 'hard to catch and easy to cure' because the infection is rare, easily diagnosed and treated with two to four weeks of antibiotics. This group claims that chronic infection by the Lyme spirochete, Borrelia burgdorferi, is rare or nonexistent. The opposing camp is represented by the International Lyme and Associated Diseases Society (ILADS), led by a group of community-based physicians. Its members argue that Lyme disease is not rare and tick bites often go unnoticed, especially since commercial laboratory testing for Lyme disease is inaccurate. Consequently, the disease is often not recognized and may persist in a large number of patients, requiring prolonged antibiotic therapy to eradicate persistent infection with the evasive Lyme spirochete. There are literally thousands of peer-reviewed studies and scientific papers supporting the community-based physician view of Lyme disease. Based on our four years of research for UNDER OUR SKIN, we believe the IDSA's view of the disease is biased because:

1. The IDSA guidelines authors are mostly “ivory-tower” New York and Connecticut academic researchers isolated from the clinical realities of mixed-coinfection, geographically diverse tick-borne disease cases in the field. 2. The IDSA guidelines authors have significant conflicts of interest that have biased their treatment and diagnostic recommendations. These conflicts include: #NAME? #NAME? #NAME? (For more details, read about the Connecticut Attorney General’s investigation into the “Flawed Lyme Disease Guideline Process” here.)

Unfortunately, the IDSA is fighting tooth and nail to avoid rewriting any of the guidelines. While I’ll elaborate on their dirty political tactics in a future post, I’d like to point out that since Attorney General Blumenthal began his investigation into the 2006 IDSA Lyme guidelines, over 500,000 Americans have acquired Lyme disease. A large percentage of these sufferers will be undiagnosed or misdiagnosed because of these guidelines. Then, we’ll have to add another 250,000 patients to this list by the time the IDSA announces the results of this evidence gathering phase. What a tragic waste of human lives and health care dollars. A summary of idsa_vs_ilads_lyme_guidelines.doc is attached here. A one-page overview of flaws in IDSA diagnostic criteria for early Lyme is attached here. For evidence submission guidelines, visit the IDSA website. As always, I recommend inquisitive readers go right to the source, by reviewing the two opposing guidelines here: IDSA Guidelines ILADS Guidelines