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Strib story lays out background of Lyme-disease advocates’ win at Capitol

An article in today’s Star Tribune reports on the victory last month by Minnesota’s Lyme disease advocates. This well-organized group of patient activists wants doctors in the state to be able to prescribe long-term antibiotics for people with “chronic” Lyme disease without fear of professional reprisals.

Writes Strib reporter Maura Lerner:

With the help of some sympathetic legislators, activists from the Minnesota Lyme Action Support Group pressured the state Board of Medicine to forgo, for now, the ability to discipline doctors for using the unproven treatment.
It was extraordinary, in part because the board has never disciplined — or even received a complaint about — a doctor for using such treatments, said Rob Leach, the board’s executive director. Yet the board agreed to adopt a five-year moratorium to prevent legislation that might have tied its hands further.
“It was the lesser of two evils, as far as we were concerned,” said Leach. Advocates say that a few doctors have been disciplined in other states for using the unproven treatment, and that some physicians in Minnesota have said they won’t offer it because they’re afraid of facing the same fate.

As Lerner notes, there’s no scientific evidence that the treatment works. In fact, some medical experts, she reports, believe the treatment to be “reckless, unproven and potentially dangerous.”

Dr. Johan S. Bakken, an infectious-disease expert at St. Luke’s Hospital in Duluth, calls it “a sad statement when politicians begin to practice medicine without a license.”
The problem, he and others say, is that many patients blame a wide constellation of painful and disabling symptoms — from panic attacks to impotence to memory loss — on what they call “chronic Lyme disease,” without any evidence they were ever infected.
There’s also concern that overuse of antibiotics can weaken their effectiveness and backfire on patients.
“We understand that people are suffering and we don’t deny that, but you need to apply the right remedy for the right condition,” said Bakken. “Now this has all been carried into the political arena. The basic message becomes, ‘Don’t confuse us with the facts.'”

Lyme disease advocates see the controversy differently, of course. Lerner quotes the Minnesota Lyme Action Support Group’s medical advisor, Dr. Elizabeth Maloney, a onetime family physician in Wyoming, Minn., who argues that the whole issue remains a scientifically open question and, therefore, patients should not have their treatment options restricted.

Lerner also tells the story of a Minnesota woman who believes her chronic Lyme disease was not only real, but also “cured” after 14 months of antibiotic treatment.

“But to Bakken,” concludes Lerner, “the fact that some people feel better on antibiotics doesn’t mean that’s the right treatment. ‘There’s a very strong placebo effect,’ he said. ‘Beliefs can move mountains.’ ”

[Full disclosure: Maura is a long-time friend of mine.]

Comments (3)

  1. Submitted by Sharon Hawkes on 04/12/2010 - 08:25 pm.

    What Dr. Bakken doesn’t tell you is that “the right remedy for the right condition” means changing the diagnosis from Lyme to fibromyalgia (no known cause), CFS (possible infectious causes are only now coming to light), or depression (it’s all in your head). Bakken does not believe that Lyme can be a chronic condition (http://www.ncbi.nlm.nih.gov/pubmed/18714930). In every disease, there will be a minority who “believe” they have it, but don’t. Do those negate the thousands who report similar experience and have had positive serologies for tick-borne diseases? I have known far too many people who improved with the “right” long-term therapy to dismiss them as easily as Dr. Bakken, and note that his attitude is exactly why the legislation in MN was necessary.

  2. Submitted by Lynn Olivier on 04/14/2010 - 12:24 am.

    I would love to ask Rob Leach what happened to the hundreds of complaints filed against doctors for misdiagnosing and under treating Lyme Disease because if those complaints had been investigated we would have had this “controversy” over and done with in 1994. It was about then that the Minnesota Medical Board investigated Dr Eliott Frank who had started a clinic to treat about 200 Lyme patients and do research on Lyme Disease at Abbott Northwestern Hospital. He was sited for some improper paperwork but his punishment was probation with the stipulation that he not treat any more Lyme Patients, just Lyme patients. This had the intended effect that there would be no quarter for not toeing the over-diagnosed and easy to treat message that the insurance companies wanted sent.

  3. Submitted by Monique Dubos on 04/14/2010 - 12:01 pm.

    Full disclosure: I am the MN Lyme Action Support Group communications person who provided the Lyme advocate sources for Ms. Lerner’s story, so I know what information was given to her and what she left out. She was lead, step-by-step, through the evidence of IDSA guideline flaws – which are used by mainstream medicine to diagnose and treat Lyme disease – as well as the scientific basis for long-term antibiotic use in SOME Lyme patients. It is a bacterial infection, after all! Ms. Lerner talked for several hours to the MLASG medical advisor, who studies the emerging research and educates on Lyme diagnosis and treatment full-time, Dr. Elizabeth Maloney. Yet Ms. Lerner chose to omit most of the information given to her, thereby denying readers all the facts about how to treat a very real epidemic in Minnesota. All Minnesotans are at risk of contracting Lyme disease. Slanted stories like the one Ms. Lerner published don’t help doctors or those who get bit by deer ticks understand the risks of not getting immediate, appropriate treatment. That Susan Perry would copy her friend’s article verbatim, further fueling a political debate, is disheartening.

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