Lyme is tricky to diagnose and the symptoms can linger for months or years even after treatment, and doctors disagree with each other and activists on the basic facts of the disease. That makes it hard on those who have it.
The telltale bull's-eye rash that's one of the few clear indications that someone has Lyme disease. Photo by CDC/James Gathany
Meghan Hilliard didn’t even think about Lyme disease until she was diagnosed with it. Her doctors didn’t mention it either. All the athletic 26-year-old knew was that she felt physically sick and mentally drained. In early 2012, her knee started swelling; by April it was so big it was unrecognizable. She couldn’t use stairs. Busses had to lower their front steps for her to struggle onboard. Any joint movement sent her into what she called a “panic.” Whatever she had affecting her brain, too—she could no longer do basic math, had constant headaches, and couldn’t hold onto objects properly.
Meghan went to her urgent care doctor four times in addition to seeing an orthopedic doctor and a rheumatologist. Despite all of them telling her that her swollen knee was indicative of some sort of infection, nobody knew exactly what was wrong. She found all the doctors to be cold and dismissive. One thought she was looking to get prescription drugs. All of this was made worse by the fact that Meghan doesn’t have health insurance. Five months after her first doctor’s visit, she was diagnosed with Lyme disease and given antibiotics—the rheumatologist discovered it while testing her for lupus.
Lyme is an infectious disease that spreads to humans through tick bites. An early symptom is a bulls-eye-shaped temporary rash that appears around the area of the bite. Not everybody who gets Lyme notices the rash, and some of the other signs of the disease resemble the flu: fatigue, joint pain, chills, and mental confusion.
Many people, if they think of Lyme at all, probably consider it to be a rare disease, one of those hazards that modern medicine has pretty much wiped out. Last month, however, the Centers for Disease Control announced that Lyme is ten times as common as once thought: it strikes about 300,000 Americans a year. “Lyme disease is a tremendous public health problem in the United States,” the CDC’s Paul Mead said in a statement. But if it’s a problem that needs to be solved, doctors first need to decide on some basic facts about it.
First of all there’s a heated debate within the medical community over the existence of “chronic Lyme.” That’s a term for those who have lingering effects attributable to the tick bite after the infection should already have been cleared up. Some doctors don’t believe it exists; others swear it does and treat patients for it. The CDC calls it “post-treatment Lyme disease syndrome” and says it affects 10 to 20 percent of those who are treated for Lyme.
The other debate is over when to test somebody for Lyme disease and when one can be diagnosed with it. Often, if the bulls-eye rash isn't visible, a doctor won’t test for Lyme, because its flu-like symptoms could indicate many different things. In the case of writer Pamela Weintraub’s son, the doctor outright refused to believe he had Lyme. As a result, she explained in an article on CNN’s website,
“My family would spend the next decade struggling to get well. Along the way, we had to navigate one of the most vitriolic fights in medicine. As the scientific community fought over the very nature of Lyme disease, debating everything from who actually had it to what treatment worked best, misdiagnosed patients were left to wander the medical outback without a compass or any clear path back to health.”
The fight Weintraub references is waged in a community of websites and activists who constantly accuse one another of spreading misinformation. (For an example of how drastic the tone of the debate is, check out lymedisease.org.) It’s tiring not only for patients navigating these contradicting sources but also for those involved in the debate. When I emailed Phillip J. Baker, the executive director of the American Lyme Disease Foundation, he declined to comment, writing, “In my opinion, there have been far too many uninformative and misleading article about Lyme disease in the media of late. We don't need any more and quite frankly I am tired of having my comments misquoted to present a point of view that I do not support.”
A view of the bacteria Borrelia burgdorferi, which causes Lyme, captured by an electron microscope. Photo by CDC/Claudia Molins
One of the roots of this controversy is that Lyme’s symptoms can look a lot like the wear and tear of ordinary life. Dr. Paul Lantos of Duke University, who studies and treats Lyme, told me that 20 percent of the general population suffers from chronic pain, 15 percent have memory problems, and 25 percent have fatigue. If someone complains about those symptoms and doesn’t have the rash, a doctor probably won’t test for the infectious disease, though Dr. Lantos says that a swollen knee plus one of those symptoms should warrant a test. “A really high proportion of healthy people in the Northeast and upper Midwest have Lyme disease if there’s a presentation of a swollen knee,” he told me. “Most [doctors] in the Northeast would have no problem testing for Lyme disease in that situation.”
The trouble is, even if somebody tests positive for Lyme, it doesn't mean they have it. If you had Lyme once as a kid and it cleared up on its own (which happens), you will test positive for Lyme forever. You could have had it once upon a time, see the doctor because you have a particularly bad flu, and get misdiagnosed with Lyme. It’s a tricky combination of having the symptoms and a testing positive—for instance, if you actually have Lyme and don’t have a rash, it can sometimes be difficult to get diagnosed properly.
The fear of misdiagnosis causes doctors to shy away from testing, as Meghan found out, but her case also shows the dangers of not testing. She thinks she has arthritis in her knees and ankles, still has swelling in her legs, and gets tired very easily. Even Dr. Lantos, who does not believe chronic Lyme exists, says that arthritis, along with some other residual symptoms, can linger after the initial disease is treated.
Dr. Daniel Cameron, an internist who believes in chronic Lyme and has been treating patients for it since 1988, told me he experiences hostility from the medical community on a regular basis. He blames situations like Meghan's on doctors relying too much on organizations like the CDC.
“I think the CDC focused so much on the rash that they haven’t discussed enough what happens when all the other symptoms start from the very beginning,” he told me. Many doctors, he feels, are waiting for the CDC to give them the OK to test for Lyme when there’s no rash. The CDC, for its part, told me through a spokesman that “laboratory tests are not recommended for patients who do not have symptoms typical of Lyme disease.”
Dr. Cameron thinks doctors who have different views on Lyme should engage in more dialogue. That way, patients who are already suffering from confusion and physical pain won't be caught in the controversial crossfire. We rely on doctors to tell us what’s wrong with us when we’re sick, so the fact that so many cases of Lyme—or something that looks like Lyme—fall into a gray area is maddening.
“Over time [patients] get disaffected by [the medical system] and alienated by professional medicine and explanations,” Dr. Lantos said.
An aggressive way to fight Lyme was proposed last week by Stanley A. Plotkin, a professor of pediatrics at the University of Pennsylvania whose son nearly died of complications from Lyme. In a New York Times op-ed, Dr. Plotkin wrote that since Lyme is prevalent, dangerous, and tricky to diagnose, we should simply develop a vaccine for it—actually, we used to have one, he said, but it was pulled from the market after a group of test subjects sued the manufacturer, claiming it caused arthritis. (Later studies found no connection between the vaccine and arthritis.) Even potential cures for Lyme are controversial.
Meanwhile, Meghan is still overwhelmed by her ongoing symptoms and unsure of where to turn. “I still feel like shit,” she told me. “Not to the level that I once did, but I still don’t feel well.”
Gina Tron is the features editor for Ladygunn magazine and the creative director for Williamsburg Fashion Weekend. She is currently in the process of completing a book. Follow her on Twitter: @_GinaTron
More on what ails us: