“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.
“I hope this happens to no one else,” Alderson says emphatically.
Unfortunately, it has, and it will likely continue to, until medical professionals reach common ground on what exactly Lyme disease is.
Those who claim that chronic Lyme exists — they are represented organizationally by the International Lyme and Associated Diseases Society (ILADS) — accuse their societal rivals, the more established IDSA, of having too narrow a view of Lyme disease.
For example, the IDSA claims that most “chronic Lyme” patients need a second opinion. They’ve been told they have Lyme disease because some of their symptoms are in line with the illness, but they don’t meet the official criteria for a diagnosis.
“As far as I can tell, there is no chronic Lyme disease,” Wormser says. “The majority of people who have been told they have chronic Lyme disease have no evidence of having ever had Lyme disease.”
He bases such an assertion on diagnostic criteria — lab testing, mostly — that chronic Lyme advocates label as inconclusive. It’s common knowledge among medical professionals that patients with a bull’s-eye rash won’t show up positive on a lab test (the antibodies won’t yet be present) — but that the rash is a sure sign of Lyme and antibiotics are in order. However, if there’s no rash, but Lyme symptoms are present, the mainstream medical establishment relies on a blood test.