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.
“If they get treated early and aggressively, usually there are no more problems,” says Constance Dickey, a registered nurse in Maine and an activist who runs several online support groups for chronic Lyme sufferers.
Sick and scared
But some people don’t get diagnosed soon enough, or else they experience ongoing or relapse symptoms. Their stories of sickness, shared in online forums, or with “Lyme literate” doctors, are frightening: a combination of debilitating symptoms such as joint pain, headaches, light and noise sensitivity, and cognitive malfunctions; neurological problems, arthritic symptoms, shaking, and lost or blurred vision; extreme fatigue that makes a simple trip to the store seem taxing.
“I try to make plans, but it never seems like I can,” Hazel Alderson says, because it’s difficult to predict the next time she’ll be bedridden.
All along, they endure multiple trips to multiple doctors, some of whom say things like what one doctor said to Alderson: “You just want attention.”
The Round Pond resident blames years of illness on chronic Lyme disease. What started with an unidentifiable “putrid smell and taste” in her mouth when she was 26 years old grew into a decade-long nightmare that’s saddled Alderson with more than $30,000 in medical bills, immeasurable emotional strife, and existence in a persistent state of medical uncertainty.
It was years before she got a clinical diagnosis of Lyme, through a comprehensive clinical screening in Lincoln, Maine (previously, doctors had suggested it was everything from MS to lupus to post-traumatic stress disorder from clinic work she’d done in Guatemala). Since then, she’s undergone traditional medical treatment as well as intense homeopathic therapies. She’s had two-month bouts where she barely got out of bed. She’s on disability. Her husband, Michael, is extremely supportive (“he’s never doubted I was sick,” she says) but in fourteen and a half years of romance, he’s never known Hazel healthy.
