Lyme Time in D.C.: Unraveling How to Best Treat the Disease

By Claudia Kalb

Medicine is so much more than mere science, especially when it comes to the highly charged matter of Lyme disease. Since 1975, when Lyme was first recognized, two things have ramped up: the number of cases reported to the Centers for Disease Control and Prevention (27,444 in 2007) and the controversy over almost every aspect of the disease—how many people have it, how to treat it, even what, exactly, it is.

The debate has all the ingredients of a medical sensation: politics, science, ethics, and money. This week, the Lyme drama comes to a head with a daylong hearing in Washington, D.C., sponsored by the Infectious Diseases Society of America (IDSA). (Watch it here.)  

One of the most contentious issues to be aired is the proper use of antibiotics to treat the disease. Some patients, who have joined forces through local support groups and the Internet, believe a long course of drug treatment is critical to recovery of what they call “chronic Lyme disease.” The therapy can last a few months to several years. Most infectious-disease specialists, on the other hand, say that the vast majority of Lyme cases can be treated quickly. Lingering symptoms like fatigue and joint pain aren’t caused by Lyme, the doctors say, but fall into a category called “medically unexplained symptoms.” They argue that long-term antibiotic treatment is not only unwarranted, it’s unsafe.

The hearing was prompted by an antitrust investigation into IDSA by Connecticut Attorney General Richard Blumenthal. (Connecticut is home to the town of Lyme, where the disease was first identified.) This is highly unusual: A.G.s don’t usually go after esteemed medical organizations. But after hearing from concerned patients, who said IDSA’s 2006 treatment guidelines—which recommend against long-term antibiotic treatment and which are used by insurance companies to assess coverage—defined the disease too narrowly and were denying them the care they needed, Blumenthal launched his investigation. He charged that IDSA’s guidelines were approved by experts who had conflicts of interest with insurance groups or drug companies. The investigation ended last year with IDSA agreeing to assemble a new panel to review its guidelines and revise or update them if necessary.

Eighteen speakers, most of them physicians, are scheduled to appear before the panel today, which is chaired by Dr. Carol Baker, a pediatric infectious-disease specialist at Baylor College of Medicine in Houston. Baker has never treated Lyme patients. “To say I’m unbiased is an understatement,” she says. Among the speakers: attorney Lorraine Johnson, who was diagnosed with Lyme in 2002, and is now chief executive officer of the California Lyme Disease Association. Johnson says her symptoms—cognitive impairment, fatigue, shortness of breath, depression—improved only after she received intravenous antibiotics over a period of nine months. “After 30 days, I started getting markedly better,” she says. “You could really see the progress.” Dr. Ray Stricker, who treats about 1,800 Lyme patients in his practice in San Francisco, says long-term antibiotic treatment has helped the majority of his patients. “They’re pretty happy after being miserable,” he says. Stricker says IDSA members “don’t want to admit they’re wrong,” but they are limiting treatment. He believes the guidelines should be revised.

But infectious-disease specialists—nearly 9,000 of whom are IDSA members—vehemently disagree and point to NIH-sponsored studies that show little or no benefit to long-term therapy. Dr. Phillip Baker, who managed three of the NIH trials and is now head of the American Lyme Disease Foundation, says he is amazed that the scientific data haven’t resolved the debate. “I just can’t stand it,” he says, “so many people are being misled.” He and others, including Dr. Gary Wormser, chief of infectious diseases at New York Medical College in Valhalla, and chair of IDSA’s 2006 guidelines panel, worry about the side effects of longterm antibiotics, which range from diarrhea to life-threatening allergic reactions. Overuse of antibiotics can also lead to a growing public-health concern: drug resistance, which can spread throughout communities and make people vulnerable to disease. And then there’s cost: Baker says longterm therapy can total as much as $50,000 a year. Doctors who prescribe it, he says, are taking advantage of patients and benefiting financially. “The net result is that people are paying a lot of money for something that’s not doing them much good,” he says.

The focus of the hearing is science, and that’s what Dr. Eugene Shapiro, a Yale pediatrician who served on previous IDSA guidelines panels, plans to talk about. Many patients who have received diagnoses of chronic Lyme disease do not even have the condition, Shapiro says. And the ongoing symptoms they struggle with are simply unexplained and unrelated. “It’s understandable that patients feel frustrated,” he says, but the science should prevail. “What you need to realize is that our primary concern is the health of patients,” he says.

The new committee will listen to the speakers and read piles of letters and reports. “My dining-room table is completely covered by documents submitted by patients and physicians,” says Baylor’s Baker. The panel has three choices: do nothing, revise portions of the current guidelines, or rewrite them altogether. Baker says they plan to make a decision by the end of the year. No matter what the outcome, however, you can bet that there will be plenty of debate to come.