The Infectious Diseases Society of America (IDSA), the organization responsible for the ubiquitous and overly strict guidelines on the diagnosis and treatment of Lyme disease, is opposing this bill. They have been sending letters to members of the House and Senate (regarding the Senate version of the bill, S. 1708) stating that they believe the bill "will promote non-scientifically-based advice about Lyme disease," even though the bill itself repeats multiple times the need for scientific evidence, a diversity of scientific perspective, and the creation of a committee including relavent scientific community members. In this letter they cite a New England Journal of Medicine (NEJM) article, An Appraisal of "Chronic Lyme Disease," as supporting the IDSA's stance against the treatment of tertiary Lyme disease—an article which was written, edited, and supported entirely by members of the IDSA and no third parties.
They are correct in asserting that the tests often implemented by doctors who treat chronic Lyme disease have not been approved by the FDA. The FDA has yet to approve any test which actually checks for the presence of Borrelia burgdorferi, the primary causal bacteria for Lyme disease, having only approved the traditional Western blot/Lyme titer testing which checks only for the presence of antibodies. They are wrong, however, in asserting a position that the lack of approved evidence for chronic bacterial infection means that the bacteria must not be present; they are wrong in asserting that the lack of certain antibodies means that the bacteria must not be present. These assertions are not scientifically founded.
They are correct in asserting that there can be problems with long-term antibiotic treatment. Thus far one person has died from receiving three years of high-dose intravenous antibiotics—a dosage which by far exceeds even the alternative guidelines provided by the International Lyme and Associated Diseases Society (ILADS). Their assertion that long-term treatment will "spur the development of antimicrobial resistant bacteria" is misguided, however, as short-term treatment is far more likely to produce antibiotic-resistant strains of Borrelia bacteria. The guidelines created by ILADS also do not recommend especially long-term antibiotic treatments except in severe cases for which no other treatment has proven effective; they merely recommend the use of marginally higher doses over marginally longer terms than traditionally used because the only way to ensure the destruction of the disease and the prevention of antibiotic-resistant strains is to hit the bacteria long, hard and fast, sometimes with successive doses of alternate antibiotics in cases where diagnosis and treatment were not immediate.
Because the proposed bill does not recommend support for ILADS or other alternative diagnosis and treatment guidelines, instead advocating new research into diagnosis and treatment methods, the concerns expressed by the IDSA are unfounded. Their opposition to the bill does nothing better than serve their intellectual monopoly over discussion of this issue and protect a very hazardous status quo. The fact that the bill is being supported by members of the Centers for Disease Control and Prevention (CDC), a federal organization which has asserted that the actual number of Lyme disease cases is likely 10 times current reports, and is opposed only by the IDSA, a private for-profit organization comprised and backed by members representing health insurance and health-care management organizations, does much to further reduce the credibility of a position against this bill. This credibility is even further reduced when their primary source, the incestuous above-referenced article in the NEJM, is itself annotated heavily by notes to the editor from various health-care professionals highlighting the flawed logic, unscientific methods, and intellectual monopolization their assertions represent.
This bill was previously proposed as S. 1479 and H.R. 3427 and was widely supported by 83 House and 12 Senate co-sponsors, but it died on the table as the 109th Congress ended in 2006. This identical bill was introduced on January 31, 2007, and currently has 98 House and 14 Senate co-sponsors but has yet to receive a proper hearing by the Energy & Commerce Health Subcommittee (House) or the Health, Education, Labor & Pensions (HELP) committee (Senate). The bill must be heard by both committees by June to have a chance of passing before it dies with the end of the 110th Congress this year. The Lyme Disease Association has information on how to help support these bills and work toward resolution for a growing worldwide epidemic. Please do what you can to help counteract the atrocious self-interest of the IDSA and support solutions for this disease. These bills may be the only thing that can help save myself and thousands, perhaps millions, of others from a crippling illness which many doctors are simply refusing to treat or acknowledge as a result of the IDSA's actions.
Thanks for reading my rant.