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Who Cares About IDSA.

Posted by Marty-Ross-MD on 04 Jan 2014 at 18:58 GMT

Stricker and Johnson have written a compelling article calling for a Lyme Manhattan Project. I whole heartedly agree with this idea. However I remain concerned by the continued waste of financial resources and time that ILADS and others promote with the goal of changing or revoking the IDSA Guidelines. While they have many good recommendations, Sticker and Johnson propose a continuation of this failed approach. It is time to move on.

And many of us are doing just that. We in the Lyme community need to look forward by educating the public and creating a movement that goes around the IDSA. The CDC study documenting the annual cases of Lyme at 300,000 a year had an important finding that is not often discussed. The authors found that nearly 2/3 of physicians in the community do not follow the IDSA guidelines. The IDSA response to this was that there needs to be better education of physicians. A more accurate interpretation of this is that physicians in the field have found other approaches that work. This also implies the "community standard" that we physicians are held to in medical board actions is not IDSA but rather to treat Lyme as we see fit. The reason I raise this is that we physicians need to stop hiding and speak out about what we do as a positive that stands on its own.

As my days working in Congress as lead health policy advisor to the United States Senate Committee on Labor and Human Resources shows, it is movements of people crying out for change that will finally catch the ears of policy makers. This is what happened with HIV/AIDS and can happen with Lyme disease as well. We physicians need to stop hiding about what we do. We need to speak out as a concerted effort to promote real change that simply ignores the IDSA. To move forward we need to stop looking back at the IDSA.

I like the idea of a treatment guidelines panel called for by Stricker and Johnson, but I fail to see why one of the objectives is revoking the failed IDSA guidelines. As 2/3 of community physicians have shown, these guidelines are really irrelevant and do not deserve our attention.

Marty Ross MD

No competing interests declared.

RE: Who Cares About IDSA.

rstricker replied to Marty-Ross-MD on 06 Jan 2014 at 10:05 GMT

As Dr. Marty Ross points out, preliminary results of three CDC studies demonstrate that (1) Lyme disease is a big problem, and (2) most physicians in the community do not follow the IDSA Lyme guidelines. His conclusion is that we should simply ignore the faulty and archaic IDSA guidelines and move forward, relying on clinical experience and research advances that will improve the lot of patients with Lyme disease.

While we agree with the “move on” sentiment, the political reality of Lyme disease is not that simple. Insurance companies continue to deny treatment for Lyme disease and medical boards continue to prosecute Lyme-literate physicians based on failure to adhere to the IDSA guidelines.1,2 Hence, revision of these guidelines is essential to improve treatment options for Lyme patients and practice options for physicians. Until these guidelines are amended to reflect current clinical and research advances, patients and clinicians will continue to suffer the slings and arrows of insurance company denials and medical board disciplinary actions that are based on the inadequate “standard of care” proffered by the substandard IDSA Lyme guidelines. In summary, the IDSA guidelines are a significant stumbling block that must be removed to allow Lyme patients to benefit from appropriate treatment by physicians who are not afraid to heal them.

Raphael B. Stricker, MD* and Lorraine Johnson, JD, MBA*
*International Lyme and Associated Diseases Society, Bethesda, MD 20827-1461.

1. Johnson L, Stricker RB (2010) The Infectious Diseases Society of America Lyme guidelines: a cautionary tale about development of clinical practice guidelines. Philos Ethics Humanit Med 5:9.
2. Stricker RB, Johnson L (2013) Chronic Lyme disease: Liberation from Lyme denialism. Am J Med 126:e13-14.

No competing interests declared.