The contentiousness of the infectious bacterial disease/syndrome, Lyme disease, unlike other infectious diseases,  has been a source of conflict between the “establishment” medical community and Lyme disease advocates and sufferers for decades. With the exception of vaccines, no other medical issue brings out the most emotion and controversy.

Mayday Project
Mayday Project

On Saturday, just days before the planned protest by the Lyme disease advocacy group, The Mayday Project, at the headquarters of the Infectious Diseases Society of America (IDSA), in the publication Morning CallJohns Hopkins Hospital infectious disease specialist Dr. Paul Auwaerter made a comparison surely to trigger more controversy and reaction.

Auwaerter reportedly likened Lyme disease to the John F. Kennedy assassination and global warming, that lend themselves to conspiracy theories. “When you don’t understand something, you try to insert a framework that makes sense to you,” he said.

This quickly drew a response from Mayday Project co-founder, Josh Cutler who said the problem doesn’t lie with patients but rather with denialist physicians, such as Auwaerter, who refuse to take into consideration a large body of science-based evidence for the existence of chronic Lyme disease.

“When is a Johns Hopkins School of Medicine researcher no longer competent to conduct research and treat patients?” asks Cutler, who has been battling Lyme disease for more than nine years. “When he ceases to have an open, scientific mind and starts to sling mud at the patients he has sworn to care for.”

According to Cutler, “Dr. Auwaerter and some of his IDSA colleagues don’t understand Lyme and its co-infections, so they try to insert a framework that makes sense to them. Other IDSA members are protecting conflicts of interest and stand to gain financially by producing guidelines that deprive chronically ill patients access to medically necessary treatment. Rather than acknowledging the epidemic of chronic Lyme, these physicians denigrate patients who are suffering and speaking out for their rights.”

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“What’s even more disturbing,” says Cutler, “is that Dr. Auwaerter is one of the physicians sitting on the panel tasked with updating the IDSA guidelines for the treatment of Lyme disease. IDSA continues to wage a campaign of denial about chronic Lyme in the face of growing scientific evidence that a very real problem exists. How many more people have to fall ill and die before IDSA wakes up and faces the epidemic at hand?”

Despite his comment, Dr. Auwaerter says he does sympathize with the Lyme sufferers: “It’s extremely frustrating to have problems your doctor cannot solve,” he said. “People are looking for answers. People don’t like unknowns.”

Cutler, and Mayday co-founder Allison Caruana, called for Dr. Auwaerter’s removal from the 2015 IDSA Guidelines panel, along with the removal of the panelists who co-authored or reviewed the 2006 guidelines; guidelines which deny the existence of persistent infection (chronic Lyme) after patients receive the IDSA recommended 2-4 week course of antibiotics.

The Mayday Project is holding a protest and vigil at IDSA headquarters April 30 through May 1 to call for the removal of the panelists with the most serious conflicts of interest and for compliance with the Institute of Medicine (IOM) standards for trustworthy guidelines.