— 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 and also in other parts of the country.
spirochete bacteria, Borrelia burgdorferi, causes Lyme
disease, about 30,000 annual cases nationwide, but the
mechanisms of infection continue to baffle medical science.
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.
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.
sides agree that an initial 10- to 14-day prescription of
doxycycline, amoxicillin and other antibiotics (sometimes with
longer regimens), cures most cases. Symptoms may begin with a
target-shaped rash around a blacklegged tick bite.
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.
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."
vocal minority of physicians use different diagnostic centers
and their own treatment centers, where antibiotics are
administered, often intravenously, sometimes for months and
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, while claiming
that symptoms often resume when the patient ceases taking the
drugs. The terminology, including chronic Lyme disease,
signals the physician’s treatment philosophy.
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.
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."
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.
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
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.
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.
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."
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.
J. Nowalk, a pediatric infectious-disease physician and
assistant professor of pediatric medicine at Children’s
Hospital of Pittsburgh of the University of Pittsburgh Medical
Center, conducted research on Lyme disease a decade ago.
"An enormous mythology" has arisen around Lyme, he
said, including a cottage industry of alternative treatments.
Children’s Hospital sees 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.
case, a mother brought in her teenager, who hadd 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
he rarely prescribes antibiotics for more than 28 days and
hardly ever puts a pediatric patient on intravenous
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.
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 recently in the
Journal of Medical Entomology and prepared by the state
Department of Environmental Resources and Indiana University
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.
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.
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