The politics of Lyme disease - WCAX.COM Local Vermont News, Weather and Sports-

The politics of Lyme disease

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The rural coastal community of Lyme, Connecticut, features a small public library; stone walls define old property lines within its wooded areas.

But the quaint New England town is best known for the debilitating disease that bears its name. Lyme disease starts with a tick bite and presents with a variety of signs, ranging from flu-like symptoms and fatigue, to neurological, kidney and heart problems, and often without the telltale bull's-eye rash.

For most, the disease lasts a few weeks and can naturally run its course, but that's not everyone's experience.

"By the time I got diagnosed, I was very sick. I was getting the flu constantly, intense chills, stabbing pains all over," said Rachel Nevitt, a Lyme disease patient.

Despite frequent checkups, Nevitt says she struggled with the disease's symptoms for 10 years before an out-of-state doctor diagnosed her with Lyme. She says she still gets brain fog, and struck by waves of incapacitation.

Here in the Green Mountains, stories like Nevitt's are becoming more common. Doctors are seeing the tick-borne bacteria spread all across Vermont, with the highest rates of infection in the south and along the western border.

Evidence of Lyme disease dates back 20-million years, but much about it remains a mystery.

Some patients say they find success taking antibiotics long-term. But the alternative treatment model carries controversy in Vermont. A recently-passed law protects doctors who prescribe long-term antibiotics for patients like Nevitt whose symptoms persist for months or years rather than weeks.

"I just want people to hear that there is another way," Nevitt said.

Many patients say they suffer from an ongoing infection, while most in the medical establishment say the disease is gone with permanent damage left behind. That divide is at the heart of the controversy.

Previously, Vermont physicians risked losing their medical licenses for prescribing long-term antibiotics because they are not recommended by the Centers for Disease Control and some medical associations.

Nevitt's spouse, farmer and state Senator David Zuckerman, fought for the change in Vermont law.

"It was certainly a step in the right direction, it was only a small step ultimately, but since there had been no steps, it felt like a good achievement," said Zuckerman, P-Chittenden County.

The law led the Medical Practice Board to write a new policy, which requires doctors to:

  • Document the basis for a Lyme or related disease diagnosis
  • Inform patients of available tests and their limitations
  • Receive consent in writing before beginning any treatment plan extending longer than a month

The policy became effective July 1, and promises not to punish doctors who follow guidelines accepted by the larger medical community or those from the International Lyme and Associated Diseases Society.

"In general, it's the board's position that we shouldn't be setting the standard of care in legislation. That's not the right way for it to happen," said David Herlihy, the executive director of the Vermont Medical Practice Board.

Herlihy says he's unaware of any Vermont doctor reprimanded for veering from treatment methods accepted by the medical community. Herlihy says the board issued the policy because of the legal mandate, and with significant reservations. He says it’s odd to see those without medical or scientific background playing a leading role in deciding appropriate treatment, especially given the board typically reviews complaints on a case by case basis not by setting a standard.

"There's an association that believes that long-term antibiotic treatment is appropriate and most of the medical world does not believe that to be the case," Herlihy said.

"There's no mandate; we didn't tell doctors what they have to do, we simply said, you have more options, not fewer," Zuckerman said.

Back on the farm, Sen. Zuckerman is not done. He calls for a new law requiring insurers to cover the costs of chronic Lyme care. He hopes the new law protecting doctors will open up treatment for patients, but is skeptical that the policy change will open most doctors' minds.

"I think there really still is a stigma that will be portrayed out to those doctors who explore these things and that's very unfortunate because we have hundreds if not thousands of people in Vermont who have gone undiagnosed or underdiagnosed," Zuckerman said.

Vermont is not the only state where patients have sought relief from politicians rather than physicians. In 2009, Connecticut-- where the country's first prominent cases came to light in Lyme-- passed a law protecting doctors. Similar measures are now on the books in New Hampshire and Massachusetts.

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