Few docs recognize "chronic" Lyme disease

By Frederik Joelving

NEW YORK | Fri Oct 22, 2010 5:33pm EDT

(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.

http://www.reuters.com/article/idUSTRE69L58A20101022

RESPONSE

Oct 23, 2010 1:09pm EDT

A review of the literature indicates Dr. Feder spent the better part of the last 15 years trying to explain away any possibility that a spirochetal infection can become chronic, disabling or more serious than the “aches and pains of daily living”.

He seems comfortable making up his own rules and dismissing, rediagnosing or undiagnosing patients (not even his own patients) claiming in part that the standard tests used to confirm a diagnosis are producing too many “false-positives”.

Perhaps he missed the journal article indicating tests missed at least 75% of patients who have Lyme (Johns Hopkins). Even Raymond Dattwyler should know better, as he once remarked, “You don’t have to have positive serology to have this [Lyme] disease.”

So how is it these two can make determinations so conclusively without having seen the patients they judge?

Perhaps the problem we have with accepting Feder’s latest survey results lies with where and how Feder has been collecting his data in the past?

It appears he spent an extraordinary amount of time on the Internet visiting online patient support groups and various web sites to gather information for one of his articles in his series of “no such thing as chronic Lyme disease”.

Then he took it upon himself to be the judge and jury about who was and wasn’t sharing accurate information. But, again, what were his conclusions based on?

Feder also reviewed actual Lyme reports at one point, basically indicating not only were patients missing the boat by not realizing they weren’t really sick after their “cost-effective treatment” was administered, but doctors (not himself, of course) must be blatantly incompetent since nearly half of their own Lyme patients, according to him, were incorrectly diagnosed.

Of the 146 case reports he reviewed, he contends, “56 (38%) were overdiagnosed, 12 (8%) were underdiagnosed, and 75 (51%) were correctly diagnosed”. He also claimed “treatment errors were made for 19 (25%) of these 75 patients.”

He went on to explain doctors were “misidentifying rashes as erythema migrans, ascribing nonspecific symptoms to Lyme disease, failing to ascribe fleeting objective symptoms to Lyme disease,” and were treating with “inappropriate antibiotic therapy for patients with Lyme disease.”

Again, where is the science that supports his universal one-size-fits-all diagnosis and treatment protocol?

The non-scientific approach to diagnosis and treatment seems to suit Feder and his cohorts just fine. For example, when asked back in 1997 how the appropriate duration of treatment for Lyme disease was established, Raymond Dattwyler replied, “two to four weeks has been the standard, so usually three weeks seems to have been adopted, although I think that is somewhat arbitrary.”

If Dattwyler and Feder want to base their conclusions on non-scientific guesses, why not allow doctors who are dealing with mounting numbers of sick patients, that are not cured with arbitrarily set protocols, do the same?

My question to Feder, Dattwyler and the IDSA would be- do you think you could throw a little science in the pot to back up your theories, especially before dismissing what is happening in the real world?

The growing numbers of chronically ill patients and their doctors deserve better.

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