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N.C. doctor faces board discipline over Lyme disease treatments
By TIM WHITMIRE : Associated Press Writer Apr 15, 2006 : 12:05 am ET
HUNTERSVILLE, N.C. -- Nearly a quarter-century ago, Dr. Joseph Jemsek was the first physician in the Charlotte area to diagnose a patient with AIDS. He became known for devotion to patients often marginalized because of the illness's association with homosexuality and drug use.
Today, the 56-year-old Jemsek is known for treating patients he believes suffer from chronic Lyme disease, a form of the illness the medical establishment doesn't believe exists. When given the standard blood test for Lyme disease, many of his patients test negative.
The dispute could cost Jemsek his license to practice. In December, the North Carolina Medical Board charged him with improperly diagnosing Lyme disease and treating it via long-term courses of intravenous antibiotics, which violates the care standard set by the Infectious Diseases Society of America, or IDSA. The state board will hear the case in June.
"That would be one of the greatest injustices in the history of the state," Jemsek said. "I don't shoot drugs -- I just prescribe too much tetracycline."
It's not just tetracycline that's gotten Jemsek in trouble, but a whole array of antibiotics, administered in varying doses, combinations and schedules, both orally and intravenously. His patients say the treatment is the only thing that provides relief of their joint pain, fevers, headaches and mental confusion -- a series of symptoms they say other doctors struggle to diagnosis and treat.
But many say Jemsek is on a dangerous path.
"There's not a great deal of published evidence that supports prolonged antibiotic treatment," said Dr. Paul Mead, based in Fort Collins, Colo., and the leading Lyme expert for the federal Centers for Disease Control and Prevention. "There is, however, evidence that these treatments can be harmful."
Doctors who diagnose patients with Lyme disease without solid evidence risk missing a correct diagnosis, said Dr. Eugene Shapiro, a pediatrics professor at the Yale University School of Medicine who helped draft the treatment guidelines Jemsek is accused of violating. Long-term antibiotic treatment also carries risk of infection with resistant bacteria and fungi, high costs and encourages the development of antibiotic-resistant "superbugs" that endanger the entire population.
"It's not that the people diagnosed with chronic Lyme disease don't have problems," he said. "It's that chronic Lyme disease is not the problem."
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Lyme disease is named after Old Lyme, Conn., where it was first described in 1975. Its most common symptom is a skin rash that appears around the site of a tick bite, and it can be accompanied by fatigue, as well as pains in the joints, muscles, head and neck. In the disease's later stages, it can affect the nervous system and the heart, and cause swelling of joints.
The Lyme bacterium is passed to humans by bites from infected deer ticks; the bulk of cases are concentrated in the northern United States.
In 2005, the most recent year for which data was available, there were more than 21,304 cases reported to the CDC -- but just 49 cases in North Carolina. "There is Lyme disease in North Carolina," said state epidemiologist Jeff Engel. "It's just rare."
The IDSA's care guidelines, set in 2000, call for a clinical examination of a patient, followed by lab tests that confirm a Lyme diagnosis. Prolonged intravenous antibiotic treatments should last at most for four weeks -- and only for patients with significant complicating neurological symptoms.
The IDSA also found no known cause of symptoms exhibited by patients who remained unwell after standard Lyme treatment, concluding there was no evidence they could be helped by long-term treatment with antibiotics and adding that "chronic Lyme disease" is not an appropriate diagnosis.
"In study after study, when patients who carried the diagnosis of chronic Lyme were re-evaluated in university medical centers, over 50 percent had no credible evidence of ever having had Lyme disease," said Dr. Gary Wormser, a member of the IDSA panel, in an e-mail interview.
The guidelines are being revised, but Shapiro said few major changes are expected. During the revision process, Shapiro said, an IDSA panel looked at letters from Jemsek urging reconsideration of the group's view of chronic Lyme disease.
"It's not like his letters were burned," he said. "Everyone read them."
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Jemsek admits there are no studies that prove long-term antibiotic treatment is effective. The only major study was stopped by the lead investigator, Boston University's Dr. Mark Klempner, because data showed no difference in the outcomes for patients who received antibiotics and those who received a placebo.
The study, according to Jemsek and chronic Lyme advocates, is flawed and unreliable. Klempner declined to be interviewed, but Shapiro and other Lyme specialists do not hesitate to cite his findings, published in 2001 in the New England Journal of Medicine.
Jemsek said he has seen his own trial-and-error methods -- different drugs, different combinations, different treatments -- work with too many patients to stop what he is doing. He is not bothered that in many cases his patients' blood does not test positive for Lyme disease.
"We're too married to our tests," he said. "Doctors just don't have time any more to think for themselves. ... I do the test, but I recognize the fallibility of the test. What's most important is how they (patients) respond to various therapies."
Doctors like Shapiro and Wormser take a dim view of Jemsek's reliance on anecdotal evidence and his sweeping assertions that the CDC and others are trying to sweep a burgeoning epidemic under the rug. While the number of cases reported last year was up 1,500 from 2004, the number of reported cases was lower in both years than the 23,764 cases reported in 2002.
"They're scared to death at the CDC, I think, that it's going to get out of control," Jemsek said. "I think the CDC fears they're going to have a mass hysteria, which they will because this is just getting bigger and bigger."
Jemsek's patients, many of whom are referred to him after seeing doctor after doctor without a diagnosis, swear by him. When he spoke to a crowd of nearly 100 at a March seminar on Lyme disease held in Raleigh, he was greeted with a standing ovation.
"He's honest, compassionate and definitely not afraid to stand up for what he believes to be true and right," said Beth Jordan, a Raleigh veterinarian and head of the N.C. Lyme Disease Foundation, an advocacy group she founded.
Jordan estimates she saw between 20 and 30 doctors in North Carolina and Virginia after falling ill in 1999.
"They would run the Lyme antibody test, it would come back negative and they would tell me I didn't have Lyme," she said. "I finally self-diagnosed. ... I could remember a tick bite I had eight months before. My symptoms were very characteristic. I just really believed I had this illness."
She started seeing Jemsek in 2002. "He's taken my health to a new level," she said.
Geri Brower, a 42-year-old Asheboro accountant who said she fell ill after a 2001 tick bite, has seen Jemsek for nearly four years. Jemsek said it took months of treatment and three or four kinds of antibiotics to find a combination that addressed Brower's palsy and severe mental confusion.
"We couldn't get her brain working," Jemsek said. "She had all kinds of co-infections."
Dr. Sharon Grundy, a general practitioner in Telluride, Colo., has referred multiple patients to Jemsek. She said Lyme is too new a disease for doctors to start drawing firm conclusions, adding she believes Jemsek's treatments are responsible.
"I don't think he's doing anything negligent. He checks labs appropriately, none of the antibiotic doses have been out of proportion to what's recommended," she said. "He's doing something out of the norm, and I think sometimes the medical establishment, they're not pro that."
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In Rhode Island, a Lyme epicenter, lawmakers passed a bill in 2002 to shield doctors who treat Lyme patients with long-term antibiotics from punishment.
The bill's author, Rep. Peter Ginaitt, D-Warwick, is a registered nurse and medical technician and said he understands why the establishment is leery of people like Jemsek.
"But when it comes down to Lyme disease, I am very much convinced from medical professionals and other people who have seen the benefit from a long-term antibiotic regimen," he said. "Sometimes you have to trust the gut of people who are seeing the benefit of something."
In North Carolina, which has no such law -- and no immediate prospect of one -- Jemsek awaits his date with the medical board.
"I've been open about this, I've never been clandestine," he said. "I knew I was at risk. We're doing things that make a difference. It's not like a renegade operation."
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