: Diagnosis: Controversy
More than two decades since the threat of Lyme disease was recognized, doctors and patients are still warring over how to identify and treat it.
A hike, a bite, a rash: Lyme disease.
When a tick digs into a bare patch of skin and a telltale rash sprouts within a month, there’s scant doubt about the diagnosis — or the treatment, for that matter.
From a doctor’s perspective, those are the easy cases. Prescribe a few weeks’ worth of antibiotics and the germs transmitted by deer ticks typically retreat.
But what about the patient who shows up desperate for relief after being engulfed with headaches, joint pain, and malaise for years? Is it Lyme disease? And if the doctor thinks it is, what then? In some cases, desperate patients confront an equally desperate prescription: an order to take antibiotics for many months, even though there’s little scientific evidence that prolonged treatment does more good than harm.
A quarter of a century since Lyme disease first loosed a bolt of fear across southern New England, the insect-borne illness still engenders controversy among doctors, patients, and governmental regulators. And polarized positions have only hardened in recent months as luminaries in infectious-disease and neurology research released new guidelines on diagnosing and treating the disease.
Usually, discussions regarding expert recommendations are confined to the pages of arcane medical journals. But it is a sure sign of the passions excited by Lyme disease that Connecticut’s attorney general is investigating whether guidelines issued in November by the Infectious Diseases Society of America trampled antitrust laws.
‘‘Our interest was prompted by a number of complaints from healthcare professionals as well as patients,’’ Connecticut Attorney General Richard Blumenthal said in an interview. ‘‘The unresolved issues related to treatment combined with the prevalence and pernicious effects of Lyme give rise to a lot of public controversy.’’
It is a controversy that has grown as rapidly as the number of Lyme disease cases. Earlier this month, federal disease trackers reported that the nation's annual tally of infections more than doubled from 1991 to 2005.
In Massachusetts, the migration of Lyme disease has proved even more striking: In 2005, there were almost 10 times as many confirmed cases as in 1991. A resurgence of deer, a favorite host for ticks, and the continued encroachment of homes into their habitat has fueled the increase, specialists said.
A Lyme infection is usually heralded by the appearance of a circular rash, fever, fatigue, headache, and aching muscles and joints. If recognized early, a two- to four-week regimen of antibiotics is prescribed and symptoms typically vanish. That is the treatment recommended in the guidelines issued last fall by the Infectious Diseases Society and in May by the American Academy of Neurology .
"The cure rate with antibiotics is very, very high," said Dr. John J. Halperin , a New Jersey neurologist who helped author the neurology group's recommendations.
But the two medical associations are emphatic that antibiotics should not be used for longer than a month. And it is on that point that sharp divisions emerge between the traditional medical academies and other doctors who remain deeply suspicious of those mainstream recommendations. It is a debate that embodies not only differences on how to treat Lyme disease but even how to define it.
Dr. Raphael Stricker said he has watched patient after patient stream into his San Francisco office stricken with virtually the same symptoms: pain that leaps from one joint to another, muscle aches, depression, memory loss. Often, they are patients who never had the distinctive rash, or who had early symptoms but ignored them, or who were previously treated for the disease but continue to suffer complications.
Frequently, Stricker said, their complaints have gone unheeded by other physicians for months or years.
"If you listen to the patients and don't immediately say they're crazy, you hear that same pattern over and over again," said Stricker, president of the International Lyme and Associated Diseases Society , a medical association. "They've usually been to 10 to 20 doctors who can't diagnose them, and that's almost becoming a symptom of Lyme disease, unfortunately."
The recently released guidelines, he said, neglect such patients and reflect the work of "an old boys' network."
"It doesn't serve patient interest, it doesn't serve physician interest, it doesn't serve anybody's interest except the insurance industry because they can deny care based on these very restrictive guidelines," Stricker said.
Stricker and a New York doctor, Brian A. Fallon , contended in interivews that the Lyme bacterium may be able to persist, lurking in patients despite treatment. But Halperin disputed the notion that the germs can find a hiding place and then strike again. "It's a fascinating hypothesis," he said, "but there's no data to support it."
The dispute exists in part because blood tests used to diagnose Lyme disease show only whether a patient has ever been exposed to the bacterium, not whether the germs are still present.
To render a diagnosis of chronic Lyme infection, Stricker said he matches a constellation of neurological and joint symptoms with a history of tick bites or visits to regions infested with ticks that carry the dangerous bacterium.
Patients with long-term infections may need long-term doses of antibiotics, said Stricker, who concedes there isn't extensive scientific evidence supporting such care.
It is that lack of proof, the authors of the treatment guidelines said, that led them to recommend against prescribing antibiotics for more than a month to treat Lyme. Dr. Eugene Shapiro , who sat on the panels that drafted both sets of recommendations, said that specialists reviewed a wide spectrum of evidence, including material cited by Stricker's confederation.
They relied on gold-standard research, Shapiro said, not on anecdotal reports. Similarly, the Infectious Diseases Society said in a statement responding to the Connecticut attorney general's investigation that its guidelines hew to "widely accepted criteria" for making recommendations on how to treat diseases.
"If somebody said, 'I rode a motorcycle up the side of the building, I felt great, why don't you try it?' you're not going to do it, right?" said Shapiro, of Yale University. "If there was evidence that the benefit of long-term use of antibiotics substantially exceeded the risk, I'd jump right on the bandwagon and recommend them myself."
And the risk is not trivial, specialists said. Some Lyme disease drugs are given intravenously, raising the possibility of infections. Then there's the specter of resistance: If antibiotics are used too much, bacteria can evolve ways of outsmarting the drugs.
"Unfortunately, Lyme disease has become an answer for a lot of people, and you can't blame them for wanting to have an answer and particularly one where there's hope of treatment and therapy and a cure," said Dr. Paul Mead , a medical epidemiologist at the US Centers for Disease Control and Prevention . "But I fear sometimes people fall into a trap of accepting Lyme disease as this broad diagnosis that could explain any symptom."
Diane Blanchard said she can still recall the day in 1987 when a tick attached itself to the nape of her neck while she gardened on New York's Long Island. She never had the signature rash of Lyme disease, but a doctor diagnosed her with the condition in 1988, prescribing a three-week course of antibiotics.
Her symptoms, though, persisted for a decade, until she was told she had a lingering form of the disease. Nine years of on and off treatment with antibiotics ensued.
"None of us want to take antibiotics, but if it is the only remedy that is offered at this moment that gives us relief, that allows us to function, then we're stuck," said Blanchard, co-president of the advocacy group Time for Lyme. "We wish we could find a cure. Until we do, we must remain open-minded.
"This controversy with two sides taking different positions is not helping either side or any patient."
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