Protestors push IDSA for change on treatment of Lyme disease - DC News FOX 5 DC WTTG

Protestors push IDSA for change on treatment of Lyme disease

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Photo: John Henrehan/FOX 5 Photo: John Henrehan/FOX 5
ARLINGTON, Va. -

About 70 people -- almost all of whom suffer from Lyme disease -- took on part of the medical establishment in Arlington this week. At the end of it all, the protesters declared a partial victory.

There is common agreement in the medical world that Lyme disease exists. In fact, the Centers for Disease Control estimates that as many as 300,000 new cases a year may occur in the United States.

The prevailing medical view is that Lyme is a short-term disease. The protesters who came to Arlington say they have had Lyme for years, and they need better medicine and better medical care than they are getting.

Some of the protesters were in wheelchairs. Almost all of them suffer from (what they call) "chronic Lyme infection," which they describe as incredibly debilitating.

Josh Cutler, who is now 34 years old, says he has had symptoms of Lyme disease for about a decade. Cutler says it was extremely bad in the beginning.

"[I] continued to go downhill to where I was stuck in bed for 19 to 20 hours a day,” he says. “I was confined to a wheelchair. At one point, my wife was having to bathe me. Very humiliating for a guy at 26, losing my career, and everything."

Sammi Radford is a slim 15-year-old who lives in Lovettsville, Va.

"I'm tired," she told us. "I can't run most of the time. In school, it's horrible because I will sit through class and zone out, and then after class, I just don't even know what happened."

The protesters had assembled in front of the Arlington headquarters of the Infectious Diseases Society of America, which recommends only a short-term antibiotic treatment for Lyme disease. The society concluded flatly in 2010 that "there is no convincing evidence of the existence of chronic Lyme infection.” That guidance limits most physicians and health plans to prescribing only a few weeks of medicine.

Amy Fitzgerald, a Lyme patient from Chantilly, Va., says the general limit for medicine is "about 30 days. And, if you are lucky, you will have a doctor -- an infectious disease doctor -- [who will] maybe give you two months of antibiotics. Oral. And after that, they will dismiss you."

Many Lyme patients then seek out alternative physicians, some of whom will prescribe long-term drugs. But then the entire cost of the medicine is borne by the patients.

The demonstrators want the guidelines reviewed.

Executives at the Infectious Diseases Society declined our request for an on-camera interview, but they referred us to a member physician: Paul Auwaerter, M.D., who practices infectious disease medicine at Johns Hopkins University.

Dr. Auwaerter said four studies have concluded that antibiotics administered to patients complaining of long-term Lyme disease symptoms did no better than placebo pills.

Leaders of the demonstrators got a brief meeting with executives at IDSA. The medical executives told the protesters in that meeting, "We're listening."

Although no specific promises were made, the "we're listening" message clearly elated the demonstrators.

In the past, leaders of the demonstrators said they have never gotten any response from the Infectious Diseases Society of America.

The group is making the protest available live online, and word of their efforts was spreading quickly via social media.  

More info:

The Mayday Project website


Twitter: @TheMDayProject

Facebook: The Mayday Project

IDSA website

Facebook: Infectious Diseases Society of America

Twitter: @IDSAInfo



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