One day in 1997, Connie Dickey went jogging in Knoxville. Stopping to rest, she noticed she had picked up a passenger on one of her legs: a tick. She dispatched it, and continued on. The slight irritation at the site of the bite didn't linger long. "I didn't have any immediate ill effects," Dickey says. "I didn't think much about it."
She also didn't think much about it when she got the flu later that summer. Or the next year when, after the birth of her first child, she noticed severe neck stiffness and back pain. Things got worse after her second pregnancy: night sweats, more pain. Doctors suggested she might have osteoarthritis. Over the next few years, Dickey suffered a cavalcade of symptoms that she couldn't find any clear explanation for: hypertension, migraines, mental fogginess, "widespread body pain," she says. "Everything hurt."
After a third and final pregnancy, which she describes as "horrible," a battery of tests still couldn't pinpoint a cause of her ailments. She was on multiple blood pressure medications, but couldn't control her hypertension. Anything doctors suggested, Dickey agreed to. She had her gall bladder removed, to no effect. She had eight months of physical therapy for a possible herniated disc. She went on antidepressants and prescription pain medication, all while trying to raise her family. One doctor suggested she needed to see a psychiatrist.
"The pain was relentless," Dickey says now. "You never got a break from it. I thought, I can't go on like this anymore. I was only at the time 39. Do I have to go on through the rest of my life like this?"
Finally, through a series of contacts, she went to see another doctor, out of state. He diagnosed Dickey with something she was only vaguely aware of: Lyme disease, in its chronic form. He put her on intensive, long-term treatment with antibiotics. "I started treatment in March of '07 and by November of '07 I felt really good," Dickey says.
Her story is similar to those recounted in the 2009 documentary Under Our Skin, which will be shown at 7 p.m. Thursday, April 21, at Downtown West Cinema. Dickey and her friend Jenny Clark, who also suffers from chronic Lyme, organized the screening to raise local awareness of the disease. The film's director, Andy Abrahams Wilson, lived in Knoxville as a boy and is flying in to conduct a Q&A session after the screening.
Lyme is caused by tiny, spiral-shaped bacteria called borellia, which are carried by nymphal and adult deer ticks. While a tick is attached to a human host, the bacteria enter the bloodstream and begin to reproduce. The disease is named for Lyme, Conn., the town where it was first identified in the 1970s. Many doctors still think of it as primarily a Northeastern phenomenon.
Dr. Abelardo Moncayo, an epidemiologist with the Tennessee Department of Health, says Lyme is in the state, but at a low level—typically about 20 cases a year are diagnosed here, compared with thousands in states in the Northeast and Midwest.
But as the film makes clear, Dickey's difficulties in finding both a diagnosis and treatment are common. Lyme is officially considered a short-term ailment by the Centers for Disease Control. The very existence of chronic Lyme has been the subject of a fierce debate and political infighting among medical authorities.
There is no question that if identified and addressed quickly, Lyme can be treated in most people with a simple, short-term course of antibiotics. But if the borellia are allowed to spread for months or years, say sufferers of chronic Lyme and the small number of doctors who specialize in it, they can produce an array of neurological symptoms. The most common treatment, through years of trial and error, has become months-long courses of intense antibiotics. Many patients report positive effects from those treatments, but the CDC and the Infectious Diseases Society of America have not been able to replicate them. So doctors who diagnose and treat chronic Lyme have faced resistance and censure from medical boards and insurance companies.
"There's a lot of obfuscation and attempts to downplay the severity of the epidemic," says Wilson, the film's director, in a telephone interview from his California home. "There's a concern about the overuse of antibiotics, which is certainly valid. But it's, in many cases, saving people's lives, enhancing their lives."
His movie dramatically illustrates the toll that chronic Lyme can take on those it afflicts and their families. Its subjects include a tour events producer for U2, whose illness sometimes makes it hard to get out of bed; a California park ranger who was bitten by a tick on the job and eventually became so sick he was forced to retire; and the author Amy Tan, who has written essays about her experience with the disease.
"We had a flood of people who wanted to tell their stories," says Wilson, who became interested after a friend came down with Lyme symptoms. His own sister had struggled with chronic Lyme years earlier, but he admits with some embarrassment that he didn't take it seriously, thinking she was exaggerating her fatigue and pain. "This is a community of people who for so long have suffered in silence, who haven't had a voice, haven't had their story told. And are not being believed, are not being taken seriously."
Jenny Clark knows what that's like. The Maryville mother of four tells a story much like Dickey's, except she does not even remember noticing a tick bite. (This is not unusual, as the ticks in their nymphal stage are about the size of a poppy seed.) Over several years, there were migraines, night sweats, partial paralysis in her face, fainting spells, shooting pains in her limbs. After her fourth child was born, she says, "I felt like I was about to die."
She saw a neurologist and a rheumatologist. She was told she "more than likely" had multiple sclerosis—a frequent misdiagnosis for people with chronic Lyme—and then told she did not. One doctor said she was experiencing a series of small strokes. "They checked me for cancer, they checked me for arsenic, every test you could think of," she says. Finally, one doctor told Clark, "I think you're having some psychological problems."
"I'm sitting there thinking, ‘You have got to be kidding. You are fired!'" Clark says. "I thought, of course I'm depressed—because no one can tell me what's wrong with me. But that's not my problem."
Eventually, she connected with Dickey through a friend. Soon Clark, too, was going out of state for treatments. Both women now report substantial improvements. Dickey says most days she feels about 90 percent back to her old self, while Clark puts herself more at the 70 percent mark. Both are susceptible to relapses, which can occur under physical or mental stress.
Like many neurological and auto-immune diseases, chronic Lyme seems to affect more women than men. Wilson says he thinks that is part of the reason the medical establishment has been so slow to recognize it.
"What this illness highlights is our patriarchal system of medicine," he says. "It's usually a group of men who are the decision-makers, and it's very often women who are reporting illness, of their family, their children, and who are the health caregivers and caretakers. This definitely implicates that system."
Even among doctors who treat chronic Lyme there is disagreement about whether or to what extent the bacteria themselves are still present years later, or if there are co-infections or auto-immune dimensions to the disease that are triggered by the initial infection. Clark and Dickey say they mostly want to reach out to others who may be suffering undiagnosed, and to highlight the need for more research on both diagnosis and treatment. (For more information on Lyme, they suggest the websites canlyme.com and ilads.org. There is also a list of resources on the website for the movie, underourskin.com. The film itself is available through Netflix and at Lawson Mcghee Library.)
Dickey says, "We want to plant a seed for someone to spark a dialogue between them and their doctor."
[Reporter's note: In writing about the diagnosis and treatment of chronic Lyme disease, I should acknowledge that my own sister has been dealing with the severe effects of the disease for the past eight years. Like Connie Dickey and Jenny Clark and many of the people interviewed in the film Under Our Skin, she has benefited from long-term antibiotic treatment. —JFM]