Few docs recognize "chronic" Lyme disease

NEW YORK (Reuters Health) - Despite lots of media attention, “chronic” Lyme disease is only recognized by a small group of doctors in Connecticut, where the tick-borne infection was first discovered.

That’s according to a new statewide survey, reported in the Journal of Pediatrics, that found just two percent of doctors in Connecticut said they had diagnosed and treated the controversial chronic version of the disease.

If you are online a lot, “you think every doctor in Connecticut believes in chronic Lyme,” said Dr. Henry Feder, of the University of Connecticut Health Center in Farmington, who worked on the study.

“What the poll shows is that’s not true,” he added.

Most medical groups agree that Lyme disease should be treated with antibiotics only for a few weeks, but some doctors and patient groups argue that longer treatments, lasting months or even years, may be necessary if symptoms linger.

Compounding the scientific controversy over whether chronic Lyme disease actually occurs, Connecticut’s attorney general sued the Infectious Diseases Society of America (IDSA) two years ago for barring physicians who advocate longer treatment courses from a guidelines panel.

While the guidelines were upheld by an independent review panel last April, that didn’t end the debate.

“There is a very small number of doctors who are very active on the Internet as well as politically and have a different point of view than the evidence dictates,” said Feder, who is a member of the IDSA but was not involved in establishing the guidelines.

According to the National Institute of Allergy and Infectious Diseases, rigorous clinical studies have shown that prolonged treatment is of little benefit to patients who have no signs of infection, but still suffer from fatigue and headaches.

Apart from making patients prone to diarrhea and fungal infections, long-term antibiotic treatment can also lead to serious infections if it’s delivered by an intravenous line.

According to the Centers for Disease Control and Prevention, about 38,000 confirmed or probable cases of Lyme disease occurred in the U.S. in 2008, mainly in Wisconsin, Minnesota and the Northeast where the ticks that carry it are widespread. In Connecticut, the rate translated to about 78 cases per 100,000 residents.

When diagnosing Lyme disease, doctors look for a red skin rash that is often found at the site of the tick bite and may also do a blood test for antibodies to the bacteria that causes the illness, called Borrelia burgdorferi.

If they find nothing, but still diagnose Lyme disease, they may actually be missing another severe disease, said Feder.

“If someone is going to get IV therapy for Lyme disease, there are dangers involved and they should get a second opinion,” he said, adding that Lyme disease is usually treated with only one antibiotic, such as doxycycline, taken by mouth.

He found half of the 285 doctors who answered his poll didn’t believe in the existence of chronic Lyme disease. Slightly fewer said they were undecided, but did not diagnose or treat the chronic version.

While the results could be swayed by the fact that many doctors chose not to respond to his mailed survey, Feder said he believed the findings were reliable.

Dr. Daniel Cameron, an outspoken opponent of the IDSA guidelines and past-president of the International Lyme and Associated Diseases Society, which was formed by advocates for chronic Lyme disease, could not be reached for comment.

Lyme expert Dr. Raymond Dattwyler, of New York Medical College, said he wasn’t surprised by the poll results.

“Chronic Lyme disease is just not accepted by the vast majority of physicians,” he told Reuters Health. “The majority of people who get the diagnosis of chronic Lyme disease have either depression, fibromyalgia or another chronic illness.”

“If you look at the symptoms that they report to be associated with chronic Lyme,” he added, “population studies have shown those are very common complaints among the general population.”

“The tragedy is that sometimes really serious, treatable diseases are ignored.”

SOURCE: Journal of Pediatrics, online September 1, 2010.