'Chronic' Lyme disease diagnosis causes rift
A high number of Lyme disease cases across Delaware, New Jersey and Pennsylvania has pulled some patients — and their health providers — into an often-contentious debate over treatment.
For most patients, a short course of antibiotics clears the bacteria infection that causes Lyme disease. The real argument centers on treatment for the 10 to 20 percent of patients who have persistent pain and fatigue, patients such as Terri Ayoub from Lewes, Del.
"I was losing my hair, my kidneys and liver weren't functioning properly, and we were getting kind of desperate," Ayoub said. "I'm sure there are some people who are cured in four weeks of treatment. But there are a whole lot of us out there that suffer constantly."
Eventually Ayoub was told she has "chronic Lyme disease," but critics call that a "dubious diagnosis."
When new deer tick nymphs hatch each spring, public health officials send out new warnings. Use insect repellent, they advise. Wear light-colored clothing and check for ticks.
"They are very, very tiny. They are very hard to see on your body. That's why our big message is prevention," said Delaware epidemiologist Paula Eggers.
About half of Lyme patients never get the classic bull's-eye rash and early symptoms -- headaches and joint pain -- can mimic other illnesses.
"So that's why a lot of the cases can go unnoticed until later when they manifest with the big swollen joints, cardiac problems neurological problems," Eggers said.
She trusts the Lyme information and education from the Centers for Disease Control and Prevention. "We don't really acknowledge the chronic Lyme disease term," she said. "What we do acknowledge is the post-treatment Lyme disease syndrome."
Patients and doctors who claim the "chronic Lyme disease" term are at odds with federal health officials and the Infectious Disease Society of America.
"One doctor said I was probably bored and I needed to get a hobby," Ayoub said. "It's offensive, it's highly offensive."
Lack of 'Lyme literacy'?
"They [patients] don't want that kind of brush off," said Lancaster County nurse practitioner Rita Rhoads. She says patients frustrated with traditional approaches to Lyme care seek out alternatives and find her. "I listen to their symptoms," she said.
Rhoads treats her patients with a mix of traditional and alternative medicine, including supplements and immune system boosters. She also offers patients antibiotics as long as they have active infection, she said.
Many of Rhoads' patients are from New Jersey and Delaware.
"As far as I'm aware there's no physician in Delaware who's what we call a Lyme-literate doctor," Rhoads said. She and other like-minded health providers follow guidelines from the International Lyme and Associated Diseases Society.
Rhoads and others believe Lyme infection can linger in the body.
"You have a major stressor in your life, a car accident a death in the family and all of a sudden ... it uncurls, becomes active again and reinfects you," she said.
Rhoads cites studies she trusts on Lyme infection in animals, but infectious disease physician Paul Auwaerter said there is no good science to back using antibiotics over months or years.
"There have really been no compelling evidence that there's a dormant infection or resistant infection after initial courses of antibiotics," he said.
Besides, he said, the practice has big health risks.
A recent patient developed a serious infection called C. difficile colitis and was hospitalized after treatment with long-term intravenous antibiotics, he said. Another patient nearly had to have a liver transplant after taking Chinese herbs that were purported to work against chronic Lyme.
Inaccurate diagnoses cloud issue
Auwaerter leads a weekly Lyme disease clinic at Johns Hopkins University but says many patients who consult with him do not have Lyme infection. Some get that diagnosis after testing at "Lyme specialty labs," Auwaerter said.
"These are labs that don't use validated testing but purport to test Lyme disease better than currently approved FDA testing," he said.
Auwaerter said multiple sclerosis, Parkinson's and fibromyalgia are just some of the conditions frequently confused with Lyme.
"I think it's an erroneous diagnosis often and I think that patients are better served by having a more accurate diagnosis of their problems," Auwaerter said. "Though Lyme disease seems quite attractive and [long-term] antibiotics offer a hope of a cure, it is a false hope."
Several state medical boards have censured health workers who prescribe long-term antibiotics. That's led to some statehouse fights over the right to treat and efforts to make insurance companies pay for certain kinds of care.
For more on the Lyme disease treatments debate watch our newsmagazine FIRST, Friday at 11 p.m. on WHYY-TV.