Impassioned debate, replete with criticisms and name-calling, rages over the cause of and treatment for lingering Lyme disease symptoms — a topic of local importance considering the infection is now found in every Pennsylvania county.
The spirochete bacteria, Borrelia burgdorferi, causes Lyme disease, with about 30,000 annual cases nationwide, but the mechanisms of infection continue to baffle medical science.
Key to the debate is the 10 to 20 percent of patients who continue experiencing Lyme symptoms — fatigue, joint and muscle pain and even heart problems — for months and even longer after antibiotic treatment. Such cases usually occur in people diagnosed months after the infection began.
Mainstream physicians say antibiotics eliminate the bacteria. But the infection can cause damage or an autoimmune reaction, resulting in lingering symptoms. A vocal minority of doctors, however, says symptoms persist because the bacteria survived the antibiotic treatment.
Both sides agree that an initial 10- to 14-day prescription of doxycycline, amoxicillin and others, sometimes longer, cures most cases. Symptoms may begin with a target-shaped rash around a blacklegged tick bite.
Citing abundant scientific studies and meta-analysis of Lyme disease studies, mainstream doctors and health institutions refer to persistent symptoms as “post-treatment Lyme disease syndrome.” The infection is gone but symptoms remain.
“After treatment, a small number of people still experience some symptoms, such as muscle aches and fatigue,” the Mayo Clinic states. “The cause of these continuing symptoms is unknown, and treating with more antibiotics doesn't help. Some experts believe that certain people who get Lyme disease are predisposed to develop an autoimmune response that contributes to their symptoms. More research is needed.”
‘Lyme-literate’ doctors
But a vocal minority of physicians uses different diagnostic centers and their own treatment centers, where antibiotics are administered, often intravenously, sometimes for months and years.
These so-called “Lyme-literate” doctors say post-treatment symptoms indicate chronic Lyme disease because they contend the bacteria is still present. They prescribe extended antibiotic treatments until symptoms disappear, with claims that symptoms often resume when the patient ceases taking the drugs. The terminology, including chronic Lyme disease, signals the physician’s treatment philosophy.
“There are two camps, unfortunately, that have been at war for the past 20-plus years, and it is a very bitter and contested situation, and one of the most contentious issues in the history of medicine,” said Kenneth B. Liegner, an internal medicine physician in Pawling, N.Y., in one of the nation’s most endemic Lyme regions. He also serves on the board of directors of the International Lyme and Associated Diseases Society, which has set treatment guidelines for chronic Lyme disease.
Both sides defend their positions by citing research. “But the data is clear, and I don’t understand why there is a controversy,” Dr. Liegner said. “The clinical findings are so obvious.”
He said some 300 peer-reviewed articles show that borreliae can be persistent even after treatment in mice, dogs, Rhesus monkeys and in “well-documented human cases.” “All you have to be is open-minded,” he said. “Those who insist there is no chronic Lyme disease have blinders on. Some go to great lengths to actually suppress the evidence, and this constitutes severe bias and intellectual dishonesty.
“There is still a refusal to acknowledge the complexity of the illness. Some people stake their reputations on the premise that chronic Lyme disease does not exist,” Dr. Liegner said. “That results in medical neglect. If they don’t like what we are doing, in using a long-term antibiotic approach, then they should develop better and reliably curative treatments.”
Diagnosis difficult
But keeping patients on antibiotics for months, even years, poses major health risks, including antibiotic resistance and potentially fatal Clostridium difficile or C-diff, which can infect the gastrointestinal system once antibiotics have destroyed protective bacteria in the gut, said Scott R. Curry, an infectious disease physician and clinical assistant professor of medicine in the University of Pittsburgh Division of Infectious Diseases.
A key issue is “the lack of an ironclad diagnostic tool” for Lyme disease and post-treatment symptoms. Such symptoms can involve other infections and various medical and psychological conditions, including depression, adding to complexities of Lyme disease, he said.
“There is no evidence that antibiotics given for a duration longer than established by clinical trials do any good for Lyme disease,” Dr. Curry said. “There is no evidence that chronic Lyme disease exists.”
His public comments, he said, typically draw angry responses from the opposition with the whole debate dissolving into accusations that infectious-disease doctors are in it just for the money. “But I don’t make any more money by telling people not to take antibiotics,” he said.
Andrew J. Nowalk, a pediatric infectious-disease physician and assistant professor of pediatric medicine at Children’s Hospital of Pittsburgh of UPMC, conducted research on Lyme disease a decade ago. “An enormous mythology” has arisen around Lyme, he said, including a cottage industry of alternative treatments.
He said Children’s Hospital has 400 new cases of Lyme disease annually with 1,200 total appointments, including patients seeking help after unsuccessful alternative treatments. “I saw one recently and wanted to just start yelling,” Dr. Nowalk said.
In that case, a mother brought in her teenager who’d undergone 10 years of antibiotic treatments for Lyme disease without reducing symptoms. Such treatments can affect dental development, among other risks. He halted the treatment immediately.
He said he rarely prescribes antibiotics for more than 28 days and hardly ever puts a pediatric patient on intravenous antibiotics.
But post-treatment symptoms “are hard to fight,” Dr. Nowalk said. That’s why he refers patients to other specialists, including behavioral psychologists and mental health experts if depression or other psychological problems occur. Post-treatment symptoms usually diminish in the course of months but some can persist even longer.
More research underway
Every county in Pennsylvania now has blacklegged (deer) ticks that carry the bacteria, prompting warnings to avoid tick exposure and be alert to symptoms. Lyme disease is fully embedded in Western Pennsylvania, states a study published last week in the Journal of Medical Entomology and prepared by the state Department of Environmental Resources and Indiana University of Pennsylvania.
A recent webinar, involving the Centers for Disease Control and Prevention, the Food and Drug Administration, the National Institutes of Health and the U.S. Department of Health & Human Services, was held to address controversies surrounding Lyme disease treatment. All embrace the mainstream strategy with the goal of determining once and for all whether the bacteria can survive antibiotic treatment.
The CDC has two studies underway to see if the bacteria can be found in sufficient numbers after treatment to cause infection. Efforts also are underway to develop better diagnostic tools for Lyme disease.
Still, the webinar cited four research trials of post-treatment Lyme disease syndrome showing that long-term antibiotic treatment “provides little if any benefit and carries significant risk.”
David Templeton: dtempleton@post-gazette.com or 412-263-1578.
First Published: April 28, 2015, 4:00 a.m.
