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.]