Lyme disease summit at UNF will try to cure controversy
Excerpted from Jacksonville.com ( Posted: 11/09/2011)
A summit this weekend at the University of North Florida is about a disease many experts say doesn’t even exist in Northeast Florida.
Lyme disease, first identified in Lyme, Conn., in 1981, is caused by bacteria transferred to humans through a tick’s bite.
But it has to be a certain type of tick to impart Lyme disease, health experts say, and those ticks aren’t found on the First Coast.
Tell that to a UNF epidemiologist, who says he has found the Lyme disease bacteria right here.
And the debate doesn’t stop there.
Other experts, including a national infectious diseases organization, insist that chronic Lyme disease — characterized by long-term physical and neurological ailments — is not a recognized condition.
Tell that to a Jacksonville woman who says her son has been battling chronic symptoms for years.
Lyme disease is that controversial.
“Under Our Skin,” a 2008 documentary that The New York Times called “scary enough to make the faint of heart decide never to venture into the woods or lie on the grass again without protective covering” details the debate within the medical community over whether chronic Lyme disease exists. The Northeast Florida Lyme Association Lyme Summit will present a screening of the film at 8 p.m. Friday.
The Infectious Diseases Society of America takes the position that there is no such condition as chronic Lyme disease and that Lyme disease is easily treated with short-term administration of antibiotics. The Centers for Disease Control and Prevention concedes on its website that some people who contract Lyme disease “will have lingering symptoms of fatigue, pain, or joint and muscle aches,” but says there is no evidence that long-term treatment with antibiotics will help.
But Cindy Durden, who organized a Jacksonville Lyme disease support group that meets monthly, said that position doesn’t help her son Trey, now 22, who has been battling debilitating symptoms since he was 8. Diagnosed and treated briefly for Lyme 14 years ago, he has been able to attend school for a full year only once in that time, Durden said.
“You can call it what you like, just treat it,” Durden said. “The frustration is you can’t get treated. Doctors don’t want to see patients [who have chronic Lyme]. They’re afraid they will be sued.”
During the course of “Under Our Skin,” two of the doctors who are shown using long-term antibiotics to treat people for chronic Lyme disease, North Carolina physician Joseph Jemsek and Connecticut physician Charles Jones, are brought before their state licensing boards and their licenses are suspended. Jemsek is also sued by an insurance company and declares bankruptcy. He has since opened a new clinic specializing in treating Lyme in Washington, D.C.
The other controversy associated with Lyme isn’t discussed in the movie.
The CDC says that Lyme disease is only found where blacklegged deer ticks are abundant and bite people — in the Northeast and mid-Atlantic states, from northeastern Virginia to Maine; in Midwestern states, mostly in Wisconsin and Minnesota; and on the West Coast, particularly Northern California. Bites from the lone star tick found in the South and Southwest can cause STARI (Southern Tick-Associated Rash Illness) but not Lyme disease, the CDC’s’ website maintains.
But Kerry Clark, a UNF professor of epidemiology and environmental health, said that he has found the Borrelia burgdorferi bacteria that causes Lyme in ticks in South Carolina, Georgia and Florida. He found the bacteria in South Carolina while doing his doctoral thesis at the University of South Carolina. He has since found the bacteria in ticks in Florida and Georgia and has tested for its presence in some of the patients of Shirley Hartman, a Jacksonville family physician.
Hartman said she has sent Clark samples from about 150 people who came to her complaining of Lyme-like symptoms and has found Lyme antibodies in about 75 percent.
“What I would diagnose as Lyme might not be what another doctor would call Lyme,” she said.
But she said she’s had good results with aggressive treatment with antibiotics.