UNF Summit Controversy
The Florida Times Union
Lyme disease summit at UNF will try to cure controversy
Experts say chronic Lyme disease doesn’t exist, but patients disagree.
Posted: November 9, 2011 - 2:18am | Updated: November 9, 2011 - 6:22am
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.
Among the people she has treated is her daughter, Chelsea Matthews. Matthews had dropped out of school suffering from chronic pain, fatigue and cognitive issues.
Matthews is back in school at Florida State College at Jacksonville, enrolled in a pre-nursing program.
Another of Hartman’s patients is Erica Larson, 34, who suffered from joint pain, swelling and fatigue for a couple of years while seeing several doctors who variously told her she had chronic fatigue syndrome, a thyroid disorder, mononucleosis, lupus, asthma and post-viral syndrome.
It was her sister-in-law, a physician from Oregon, who first suggested she get tested for Lyme disease. When she asked a doctor for the test, she said, he told her there wasn’t any Lyme disease in Florida.
About two months ago, she found Hartman, who has been treating her with antibiotics and other non-traditional approaches.
“I feel lucky,” Larson said. “I got a diagnosis after two years … Now I know I will get back to normal one day. But it’s a marathon, not a sprint.”
In the meantime, her health insurance has been canceled and she’s spent about $10,000 trying to find out what was wrong with her.
UNF’s Clark has been “trying to find better ways to test” for Lyme. The CDC concedes that the 20,000 new cases of Lyme identified each year are probably a significant under-count of the number of people who actually get the disease.
What Clark hadn’t expected was to become his own test subject. But in the spring of 2010, while working in the field near Atlanta, he was bitten by a lone star tick. When he developed swollen lymph nodes and flu-like symptoms, he sought treatment with antibiotics.
“Everything seemed fine for several months,” Clark said.
Then he began suffering fatigue and a severe headaches. He tested himself several times and one of the tests indicated the ongoing presence of the Lyme-causing bacteria.
He remembers thinking, “I can’t believe I’m so happy to diagnose myself with a disease.”
After three more months of antibiotic treatment, his symptoms vanished, Clark said.
Watching “Under Our Skin” could leave a viewer convinced that there’s something nefarious in the way the medical establishment is resisting classifying Lyme disease as a chronic, treatable illness. The New York Times does note that the movie’s style is “inflammatory” and, as Forbes magazine reported in a 2007 piece, there are concerns on both sides of the issue: “The mainstream doctors warn about an epidemic of bunk diagnoses and dangerous treatments. Insurers often refuse to cover the cost of treating chronic Lyme.”
Clark said he understands the medical community’s resistance.
“They’re following what they’ve heard and read,” he said. “But what’s being taught about Lyme is not what we’re learning on the cutting edge of research. … The world of science and medicine moves like a slow, muddy river.”
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KELLY JORDAN/The Times-Union
Shirley Hartman (left), a Jacksonville family physician, began treating a lot of Lyme patients after her daughter, Chelsea Matthews, 21, began battling symptoms that forced her to drop out of college. Now Chelsea is back at FSCJ studying to be a nurse.
12000 Alumni Drive, Jacksonville, Florida
Northeast Florida Lyme association lyme summit
Where: University of North Florida’s University Center, 12000 Alumni Drive, Jacksonville.
What: The conference is intended for medical professionals but is open to anyone interested in learning more about Lyme disease.
When: Patrons party at 6 p.m. Friday; screening of “Under Our Skin” at 8 p.m. Friday; medical conference, 9 a.m.-4:30 p.m. Saturday. Cost: Patrons party, $50; Patrons party and medical conference, $95; “Under Our Skin,” free.