LymeBlog - Denying Lyme is a crime

Denying Lyme is a crime
The Press of Manorville & the Moriches, NY
By EVA HAUGHIE, President Empire State Lyme Disease Association Manorville

A rally protesting the Infectious Diseases Society of America Guidelines for the Treatment of Lyme Disease was held outside the Westchester Medical Center in Valhalla on November 30, and was attended by more than 300 people from 16 states.

So where to begin? With the children, carrying signs saying, “I Was Born With Lyme Disease, Don’t Make Me Suffer” and “Kids Aren’t IDSA Lab Rats.”

This rally was attended by people too ill to stand, people who came in motorized wheelchairs, but people who somehow made it there, traveling hours and hours in order to voice their objections to the IDSA’s guidelines.
We carried signs that said, “I’m Here Because Four Weeks of Antibiotics Didn’t Work,” and “Long-Term Antibiotics Saved My Life,” and “IDSA Guidelines Deny Medical Reality.”

IDSA was no longer short for Infectious Diseases Society of America, but for “I Don’t Save Anyone” and “Ignorant Doctors Suppress Advancement.”

Pat Smith, president of the Lyme Disease Association, addressed the gathering, holding up a “broken” clock. “Just as this clock is running backward, the IDSA guidelines are sending us back in time,” Pat said.

Dr. Joseph J. Burrascano Jr., vice president of the International Lyme and Associated Diseases Society, told those present that he had read over the guidelines carefully, and if they weren’t so awful for patients, they would have been laughable. He warned that if we accept the guidelines, we would be entrusting the lives of those in the United States and the entire world to what amounts to a fraudulent document.

New York State Assemblyman Joel M. Miller was amazed, he said, when he asked two doctors in his district, a rheumatologist and an infectious disease doctor, how they treat Lyme disease. Both answered that they don’t know how to treat it, so they leave it alone.

Joel then spoke about how patients who get “left alone” later get diagnosed with MS, ALS, lupus, fibromyalgia, and by this time the crowd chimed in with, “and chronic fatigue.” Joel shook his head and said, “And then they don’t do anything for you.”

Then he reminded us of two things: It is a known fact that antibiotics do help in some cases of autoimmune diseases, and we all know people with chronic Lyme who have slowly improved with antibiotics—they get out of wheelchairs, and some are able to completely resume normal lives. But the IDSA has chosen to ignore all these people and instead, he said, insist on these idiotic nonsensical guidelines—throwing us back to the Dark Ages.

We at Empire State firmly believe that we simply cannot allow 14 doctors, the authors of the guidelines, who have minimal or no chronic Lyme experience, to have so much power.

The IDSA is a private organization that is dictating medical standards. If you don’t want to be dictated to, if you don’t want to take chances in the event that you or a loved one is infected with Lyme disease, or if you already are fighting this illness, call or write to Governor-elect Eliot Spitzer at www.transitionny.org and ask him to create a New York task force on Lyme disease with representation from the Empire State Lyme Disease Association.

In addition, please write the New York State Attorney General’s office at 1250 Broadway, New York, NY 10001, or call (212) 416-8750 and urge that we join with Connecticut Attorney General Richard Blumenthal, or Assistant Attorney General Tom Ryan in the investigation of the IDSA.

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The Press of Manorville & the Moriches, NY

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