When I first heard Duke University physician and cancer researcher Neil Spector talk about his Lyme disease ordeal, my heart skipped a beat. Spector had gone undiagnosed for years, he said, which had led to persistent poor health and a rare but serious complication that resulted in a heart transplant.
His story scared me. Earlier that week — this happened last spring — I’d picked up my daughter from college. Her bout of Lyme disease when she was 8 had gone undetected for a year, and although we had followed the prescribed treatment (a month of antibiotics), she would spend the next 12 years with seemingly disconnected and random aches and pains: Her joints would hurt, her eyes would blur, fatigue would overwhelm her. She suspected, she told me after leaving her dormitory, that she had chronic Lyme disease.
I made an appointment with a doctor whose Web site described his expertise in treating chronic Lyme. I assumed that we would follow another course of antibiotic treatment and that my daughter would soon feel well. After meeting the doctor, I wanted to learn more about the condition, and finally turned to Dr. Google, where I found that we were in a controversial and rabid world.
The nation’s top medical experts, including those at the Centers for Disease Control and Prevention and National Institutes of Health, say that 10 to 20 percent of people treated for Lyme disease, which is transmitted by infected ticks, will later develop post-Lyme syndrome, an autoimmune response triggered by the initial tick bite. These patients may experience a host of ongoing symptoms, ranging from joint pain to fatigue to vision disturbances.
But other professional and patient groups, such as the International Lyme and Associated Diseases Society, claim that these symptoms indicate chronic Lyme, the result of ongoing infection by the bacteria that cause Lyme. Such patients, according to self-described Lyme-literate doctors, may benefit from long-term, high-dose antibiotic treatment and even IV antibiotics, to rid the body of lingering bacteria. Clinical studies, however, show no evidence that such treatment is effective; what’s more, it can be unsafe.
A 2008 documentary, “Under Our Skin,” chronicles the dispute between Lyme advocates and infectious-disease experts.
The CDC says that as many as 300,000 people may be infected each year with Lyme. In addition to clinical diagnosis, blood tests are used to confirm Lyme, but, done too soon, they can lead to false negatives. The CDC notes that the body takes four to six weeks to make antibodies that the blood test detects.
Detecting the deer ticks responsible for spreading the disease is hard: They are about the size of a pencil tip, and they burrow in hair and hard-to-reach places. Infection is not immediate: A tick must be attached to the body for 36 to 48 hours or more for infection to occur.
Although it’s widely known that the bite of a Lyme-infected tick can produce a tell-tale red bull’s-eye rash, that rash does not always appear. The American Lyme Disease Foundation recommends that people see a doctor immediately if they begin to experience fevers, chills and widespread joint and muscle pain and if they think they have been exposed to ticks.
After a year of unexplained symptoms, including high fevers and severe joint pain, my daughter was tested for leukemia and other diseases — but not for Lyme. Our doctor assured me that, even though our house was in the woods, Lyme was not possible because my daughter had not had a bull’s-eye rash. I eventually consulted another pediatrician, who ordered the Lyme test; it detected the disease.
Spector encountered similar challenges. When we first met, he told me how his doctors repeatedly dismissed his symptoms as stress-related.
“I had all the symptoms [of Lyme]: unexplained weight loss and others that could not just be put in a package. Then I developed arthritis. As it turned out, I happened to be taking the same antibiotic that is used to treat Lyme, although for a different problem,” Spector said.
While on the antibiotic, Spector said, his arthritic symptoms disappeared, confirming for him that Lyme disease had been causing the arthritis. “When I told my doctors this was further evidence I had untreated Lyme, they told me the rapid resolution of my symptoms was merely a non-specific anti-inflammatory effect of that class of antibiotics,” he said. “I say that if it waddles and quacks, it’s a duck. In my case, I had an atypical story, and people just weren’t looking for it.”
The undiagnosed Lyme had taken a toll on Spector, leading to heart failure, a rare but known complication of the disease. Five years ago he had a transplant. Spector, 57, now heads the developmental therapeutics program at the Duke Cancer Institute.
For most people with Lyme, a 30-day course of antibiotics is enough to cure the infection. But according to Gary Wormser, an infectious-disease expert who helped develop the Lyme guidelines of the Infectious Disease Society of America, not everyone responds to this treatment. And for these people, a lifetime of health problems can ensue.
Paul Auwaerter, clinical director for infectious disease at Johns Hopkins, said he sees people “who have puzzling or medically hard to understand symptoms. We don’t have precise definitions for problems that might include chronic fatigue, musculoskeletal pain, poor and unrestorative sleep, subjective neurocognitive dysfunction, or ‘brain fog.’ ”
He said that Lyme disease “is capable of inflicting these symptoms on previously healthy people — not a large number, but a small minority develop a post-infection syndrome.”
There are no tests for this ongoing condition. And no real treatment. “What is the right approach to this?” Wormser asked. “We don’t have guidelines for medically unexplained symptoms. It is frustrating, and it is hard to fund research on this. I tell patients that doctors are really good at diagnosing severe, life-threatening cancer, or lupus, or renal failure. But doctors in general have a hard time putting a specific name on symptoms that are quality-of-life-threatening but not life-threatening.”
Wormser said that many people who come to him for help with what they describe as chronic Lyme have no evidence of ever having been infected with it. He does not doubt the reality of these patients’ suffering, but in the absence of a positive Lyme blood test, he does not believe antibiotics are an appropriate treatment.
Auwaerter has concerns about the safety of long-term, high-dose antibiotic treatment, too. “The clearest harm occurs in people who end up with long-term IV antibiotic therapy. Having a catheter like that puts you at risk for central-line infections or clots. And oral or injectable antibiotics can drive antibiotic resistance and create problems later in your life if you have a bacterial infection.”
I asked him about my daughter: It is very clear to me that she is in pain and struggling, but our primary-care doctor dismissed her symptoms and said there is “no such thing as chronic Lyme.” She offered no treatment for the ongoing joint pain and fatigue my daughter experiences. We continue to sort through ideas and strategies, even as a new semester of college has begun.
“In predisposed individuals, there is antigenic debris [bacterial and cellular residue from an infection] that doesn’t clear the body, and this may be the root of problems in people who have post-treatment syndrome. We are looking at drug combinations to eradicate persistence in animals, but nothing yet in humans,” Auwaerter said.
And if antibiotics don’t work, I asked, what does? I want help for my daughter; I want her on her feet and better. The uncertainty in not being able to do this is frustrating, and I can imagine the challenges patients face as they journey from doctor to doctor, looking for a cure.
“We just don’t know what would help, so we take information from other conditions that overlap or have similarities,” he said.
For many patients, Auwaerter says, the best treatment for symptoms that mimic chronic fatigue or fibromyalgia includes low-impact exercise, diet changes and cognitive behavioral therapy — but no antibiotics.
It’s important for people to press on, even if a doctor dismisses them. When I told Spector what my doctor had said, he exclaimed, “If you see a doctor who tells you something never happens, you need a new doctor. No one is that omnipotent; no one has the knowledge of human biology and pathology to make a statement like that. Saying that is the antithesis of what medicine is about.”
“The issue is emotionally charged on both ends — from established, ivory-tower academics who believe there is overtreatment in the Lyme community to the charlatans preying on patients,” he said. “The community says that the academics don’t see their real-world experience. Neither side sees the shades of gray in medicine, where nothing is black and white.”
Wormser suggests that Lyme advocates should push for more federal funds to research the symptoms patients describe.
In the meantime, Spector said, “we have people like your daughter, like me, people who feel lousy from all sorts of things, who don’t fit into algorithms that have a bar code associated with it. They fall between the cracks. People like us defy medicine as an exact science.”
For now, the best strategy is prevention. If you are in the woods or tall This version has been corrected.grass, wear long pants and sleeves. Check for ticks. Wear light clothes so that ticks are easier to spot, and use insect repellent. If you find a tick on your body, use tweezers to pull it slowly out, and save it in a jar. Watch for symptoms of Lyme and, if they occur, take the tick and see a doctor. Early treatment is very effective — and long delays may cost you for years.
Correction: A previous version of this article misspelled the first name of Gary Wormser, an infectious disease expert in New York, and the last name of Paul G. Auwaerter, clinical director for infectious disease at Johns Hopkins University. This version has been corrected.
Lynch Schuster is a freelance writer who lives in Maryland.