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Once bitten

The fight over what is — and what is not — Lyme disease
By DEIRDRE FULTON  |  September 17, 2008

"What’s wrong with them? Lyme documentary gets Under Our Skin," by Deirdre Fulton
The deer ticks that carry Lyme disease are tiny. Young ticks are often compared to pinheads (the item, not the insult); a full-grown adult is roughly the size of a sesame seed. But from these minute creatures, a huge, unresolved medical controversy has grown: Does chronic Lyme disease exist? If so, how is it treated? If not, what’s making so many people so very sick?

It’s a controversy that rages even while people suffer — people like Mainer Hazel Alderson, or the subjects in Under Our Skin, a documentary that will screen at SPACE Gallery this week. These are people who suffer from what they call chronic Lyme disease — but what others have diagnosed as everything from simple “post-Lyme disorder” (lingering symptoms without a persistent bacterial infection), to multiple sclerosis or Parkinson’s disease. In some cases, patients are told they have some type of psychological or psychosomatic illness.

“Sometimes...people are fine until they start reading the Internet,” says Gary Wormser, a Lyme expert and a member of the Infectious Diseases Society of America (IDSA). That organization is vilified by chronic Lyme patients and in Under Our Skin because it suggests, in a set of medical guidelines issued in 2006, that long-term antibiotic treatment — on which many chronic Lyme sufferers depend to make them feel at least somewhat healthy — is unsafe and not advisable. The IDSA also questions the very existence of the disease these people claim to have. “It’s true that many times we’re dealing with patients for whom we don’t really have the answers, but just because that’s the case doesn’t mean they have Lyme disease.”

The answers are hard to come by, due to a dearth of research dollars and a tendency for researchers to hoard their findings. And the situation will only get worse. Passionate advocates on both sides of this controversy have likened it to the one that raged over the AIDS epidemic during the 1980s.

Lyme disease is the fastest-growing, and most-reported, vector-borne disease (meaning it’s transmitted through a third party) in the country. In 2006, 19,931 cases of Lyme disease were reported to the federal Centers for Disease Control in 2006, more than double the annual rate in 1991, when the CDC first started tracking Lyme. Of those cases, 338 of them were in Maine. This year, there will certainly be more: “as many as seven in 10” deer ticks in a swath of Maine stretching from Kittery to Brunswick could carry the disease this fall, according to Charles Lubelczyk, a field biologist at Maine Medical Center’s Vector Borne Disease Laboratory.

The “lucky” majority of those who contract Lyme disease, named after the Connecticut town of its discovery, will catch it early. The burrowing bacteria Borrelia burgdorferi (similar in corkscrew shape and behavior to the bacteria that carry syphilis) will screw their ways into those people’s bodies, produce the trademark fever, joint pain, and “bull’s-eye” rash that are associated with Lyme; they will go to the doctor, get a prescription for approximately 14 days of antibiotics, and put the experience behind them.

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Related: Letters to the Portland editor, September 23, 2008, What’s wrong with them?, Photos: Deer Tick + Jenny Lewis at House of Blues, More more >
  Topics: News Features , Health and Fitness, Medicine, Contagious and Infectious Diseases,  More more >
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