Kim, a resident of rural Green County who works in Madison, doesn't blame her doctor.
"My doctor was concerned about me," she says. "She tried to find out what was wrong." Kim, who asked that her last name not be used discussing a sensitive medical issue, says her doctor ordered tests for Lyme disease and multiple sclerosis. Both were negative.
But Kim wasn't convinced about the Lyme. She'd heard about false negatives for this disease, a bacterial infection transmitted by deer ticks no bigger than a poppy seed. "But my doctor said if I actually had Lyme, I would be in much worse shape."
That was last November. By April, Kim was in "much worse shape." She had a constant low-grade buzzing through her body "that felt like I was holding a live electrical cord." And there were new symptoms: blurry vision, numbness on one side of her face, ringing in her ears, and assorted cognitive issues. "I wasn't processing information. I had trouble focusing. I would start a task and not complete it."
Lyme is a progressive disease, sometimes marked by a "bull's-eye" rash and flu-like symptoms in the early stage. It can mimic many other diseases, including Parkinson's, chronic fatigue, fibromyalgia, migraines, MS, ALS, arthritis and Alzheimer's. It can affect any organ in the body, including the nervous system and brain.
According to the Centers for Disease Control (CDC), Lyme is the fastest-growing infectious disease in the nation, with children and adults over 40 most susceptible. Wisconsin is one of 10 states where the disease is considered endemic, meaning it occurs throughout the state.
Lyme is particularly heavy in western Wisconsin. Statewide, there were 1,814 new cases in 2007, compared to 631 cases in 2000, a 287% increase. But even the CDC acknowledges its reporting system is flawed, possibly undercounting actual cases in endemic states by a factor of six to 12.
"Symptoms can be very general," notes Diep Johnson, an epidemiologist with the Wisconsin Division of Public Health. "Blood tests produce false negatives and positives." Johnson's office monitors state health department reports on Lyme before they go to the CDC. If a doctor's Lyme diagnosis doesn't meet official guidelines, the case isn't counted.
Still, the number of confirmed cases is rising.
"This has been a busy year for Lyme disease," says Dr. Nasia Safdar of the UW Hospital's infectious disease clinic. She acknowledges the controversy in the medical community and among patients: "There are challenges in Lyme disease diagnosis and variability in treatment approaches."
That's something of an understatement.
This spring, Kim returned to her doctor; she took another Lyme test and got another negative result. She decided to take matters into her own hands.
"I raise animals," says Kim. "I know how to get veterinary antibiotics and how to use them properly. I ordered a 60-day supply of doxycycline, and I began to recover."
Stories of Lyme misdiagnosis are not unusual, according to Dr. Steven Meress, an internal medicine specialist in Fond du Lac who treats Lyme disease and has a waiting list many months long. "Ninety-five percent of my Lyme patients have seen more than seven doctors before they come to me," he says. "Most have a history on average of receiving 20 or more different diagnoses."
By the time they come to him, many of Meress' patients are severely ill. They travel great distances, often paying out-of-pocket for treatment.
"Doctors need to learn how to recognize the Lyme symptoms and educate themselves about Lyme," says Meress. "They need to listen to their patients."
Meress is one of a handful of doctors in the Midwest affiliated with the International Lyme and Associated Diseases Society. The group has developed protocols for diagnosing and treating Lyme that differ significantly from those recommended by the Infectious Disease Society of America, which most doctors follow. These differences have turned Lyme into a big medical controversy.
"The politics surrounding Lyme disease are stunning," says Sara Brenner, a Madison resident who has had four incidents of Lyme since 2002, one of which she believes she contacted on an overgrown path near her east-side home. "People have difficulty getting diagnosed in a timely fashion, and then they get sicker and need longer treatment but can't get it."
Most doctors, she notes, rely on standards set by the CDC and the Infectious Disease Society. "But information coming from these groups is in contradiction to people's experience of the disease."
Physicians trained by the International Lyme and Associated Disease Society believe the Lyme infection can remain in the body indefinitely, eventually erupting into a wide range of debilitating and painful symptoms. They say that their "chronic Lyme" patients are responding to long-term antibiotics and other therapies and that many regain full health.
The Infectious Disease Society, meanwhile, says such symptoms are due to damage caused by the infection before it was treated. They call this "post-Lyme syndrome," an untreatable non-illness, not covered by most health insurance providers.
Tom Easton, a Madison small business owner, thinks he may have had the characteristic rash associated with Lyme disease seven years ago, when he was trying to get treated for a raging fever and headaches that developed after a family vacation near Spooner.
At the time, Easton didn't know much about Lyme. He didn't mention the red splotch to doctors, and no one asked. His test results were inconclusive. After two weeks on doxycycline, his fever subsided, but extreme fatigue and joint pain set in and continued for years.
"I slept a lot and still felt exhausted," says Easton. "Drinking green tea helped me get through the day."
One year later, Easton tested again, and it was positive. He says an infectious disease doctor told him that he had already been treated adequately. "He told me to get off the tea and have a better attitude, says Easton. "He said I had post-Lyme syndrome, and if I wanted to know what it was I could Google it."
Easton did Google Lyme. Eventually he linked up with an online support group that included Madison-area residents. There he learned about the International Lyme and Associated Diseases Society, and contacted one of its "Lyme-literate" doctors.
"There's still at least one week out of each month when I don't do well, he says. "It's a roller coaster that's gradually getting better."
This summer Kim also found a doctor though the Lyme society, one who "was okay that I treated myself. He said, 'You did what you had to do.'" Now this doctor is monitoring her further recovery.
"Lately," says Kim, "I'm feeling better. The feeling in my face has returned, my eyes are not blurry, and the cognitive issues are gone. I still get a low-level buzzing, but now it's more like background noise. I feel like I'm getting my life back."
Film tells the tale
Under Our Skin, an award-winning new documentary, makes its Madison debut at Sundance Cinemas from Oct. 9 to 15. The film focuses on the Lyme controversy through stories of those affected by the disease. Lyme advocates from around Wisconsin will lead discussions following the 7 pm screening on Oct. 9 and the 4:30 pm screening on Oct. 10.
