“Shame on you IDSA” says UNDER OUR SKIN's Jordan Fisher Smith

Jordan Fisher Smith, the eloquent park ranger featured in UNDER OUR SKIN and the author of the acclaimed naturalist book “Nature Noir,” has written this open letter to the Infectious Diseases Society of America (IDSA), in response to the society's decision to make no changes to their controversial 2006 IDSA Lyme Disease guidelines.

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To the Infectious Diseases Society of America:

Almost twelve years ago, I was bitten by a tick at work, and contracted Lyme Disease and Babesiosis. Because of the job you've done at diminishing the perception of danger about tick-borne disease and pressuring doctors who treat it aggressively out of business, it took a year and a half and a nationwide search to find a doctor who would treat me.

By then I was dreadfully ill, and as a result I lost my job and my 21-year career. In my first year of antibiotic treatment I got worse. I pursued aggressive treatment for another six years, during which time I got steadily, if slowly better. During this time one of my two doctors was forced out of practice as a result of your work. Thanks to my heroic physicians, I am recovered after a nine-year battle with tick-borne disease. And I am now contributing to society, working, and raising my kids.

Your ineffectiveness and the extent of your compromise with the insurance and HMO businesses are noted. You and your work will be forgotten eventually, as we have forgotten the names of the opponents of Copernicus. Shame on you for the suffering you are causing on the way to your eventual obscurity as prideful scientists who called it tragically wrong. The monument to your life's work is an unchecked epidemic.

---Jordan Fisher Smith, recovered victim of tick-borne disease

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The reevaluation of the IDSA Lyme guidelines was driven by an antitrust investigation led by Connecticut Attorney General Richard Blumenthal. During his 17-month investigation, Blumenthal found substantial conflicts of interest among the 2006 guidelines authors, who held commercial interests in Lyme-related diagnostic tests, vaccines, and insurance. In addition, he found that this panel had suppressed scientific evidence and excluded opposing views.

Lorraine Johnson, CEO of the Lyme patient advocacy group California Lyme Disease Association (CALDA), questions the integrity of the evaluation, saying that the IDSA “stacked the panel, paid the ethicist, ran the process, and achieved a foregone conclusion which ‘validated’ their guidelines.”

The Connecticut Attorney General Richard Blumenthal is currently reviewing the IDSA Lyme report to determine whether the IDSA has violated the Settlement Agreement.

If you would like to submit your feedback on how the IDSA Lyme disease guidelines have affected you and/or your family, emails can be sent here:
attorney.general@po.state.ct.us

To send a copy to the IDSA leadership:

Richard Whitley, MD, IDSA President: rwhitley@peds.uab.edu
Diana Olson, IDSA VP of Communications: dolson@idsociety.org
James M. Hughes, MD, FIDSA, IDSA President-Elect: jmhughe@emory.edu
Mark A. Leasure, IDSA Chief Executive Officer: mleasure@idsociety.org
Carol J. Baker, MD, IDSA Lyme disease panel chair: cbaker@bcm.edu

Photo by Jim Herrington