Mixed news on tick-borne diseases
Doctor Bernard Raxlen offered cautious encouragement about tick-borne diseases in a telephone interview last week from his New York City office Tuesday. Dr. Raxlen devotes most of his practice to the treatment of chronic Lyme disease.
Chronic Lyme disease and Post-Lyme Disease Syndrome are terms used to describe a variety of medical conditions that stem from what some contend is an established and untreated Lyme disease infection. It is a topic that has ignited fierce debate among the public and medical community regarding treatment options and the extent of the condition.
Dr. Raxlen was on the Vineyard to take part in panel discussions last night at the Chilmark Community Center and tonight at the Old Whaling Church following screenings of the documentary "Under Our Skin: The Untold Story of Lyme Disease" (See "Getting under the skin," Calendar, Page 6, Aug. 7).
The panel discussion is being sponsored by the recently formed Martha's Vineyard Lyme Disease Association in conjunction with the screening of the film.
Also on the panel are Dr. Daniel Cameron of Mt. Kisco, New York, president of the International Lyme and Associated Diseases Society (ILADS), and Island physician Gerald Yukevich.
"It's a real question," said Dr. Raxlen about whether chronic Lyme disease can be cured. "It depends on the individual, their age, sex, how long they have been exposed, genetic make-up, what systems have been affected.
"The question is how much previous damage has been done. Patients with long-term exposure with neurological problems often don't fare that well. You can arrest it, but to turn back the clock is another story."
Dr. Raxlen said that every case is different and recovery time cannot be predicted. "The idea is not to set a timetable but to follow the patient over the course of the illness" and make adjustments as conditions change.
Nonetheless, Dr. Raxlen held out hope for chronic Lyme patients. "I'm encouraged by long-term antibiotic treatment," he said. "I've seen mostly good and minimal ill following that."
Dr. Raxlen frequently treats patients with intravenous antibiotics for as long as 18 to 24 months. He has treated with oral antibiotics for even longer periods. He uses supplements to guard patients from ill effects of antibiotics on their systems.
Dr. Raxlen agrees that Lyme disease is a worldwide epidemic. He said evidence suggests that ticks and the diseases they carry have spread from the small area on the Connecticut shoreline where Lyme disease was first identified to countries around the globe. But he added that tick-borne diseases might have existed elsewhere in the world for many years without being recognized as such. The diseases are seen in Northern and Eastern Europe, he said, and although usually limited to cooler climates are now appearing in the southern U.S.
Asked about whether an effective vaccine is on the horizon, Dr. Raxlen said there are challenges but he believes it is possible. "It's tricky now," he said. "We've discovered the tick carries four and probably six organisms. A vaccine would have to cover all of those organisms." A vaccine developed several years ago was taken off the market because some patients were sensitive to it, he said.
"Now the tick is a loaded cannon," Dr. Raxlen said, listing the various diseases that ticks carry and are suspected to carry, including a viral encephalitis that has been diagnosed in Eastern Europe but has not appeared in the U.S. to date.
"If you live in a high endemic areas with gardens, grass, mammals, you have to be careful," Dr. Raxlen warned. "If you live in such areas and are going to high endemic areas for vacation...you're going to be exposed to tick bites, some of which will be infected, some of which will not."
Dr. Raxlen said that preventive measures such as applying repellent spray, wearing light socks, and doing tick checks can be useful, "but ticks are very slippery." He said that the best defense is for people to be educated on tick-borne disease, to know the symptoms, and be vigilant so they can seek prompt treatment. He said those suspecting they have tick-borne illness must be aggressive with physicians when necessary to demand definitive diagnosis and treatment.
"It's a very treatable illness and you're not mired in chronicity," he said, adding that many of his patients have been cured. "It is knowable. You don't want the Lyme fear, that's not good. If you pick it up soon you have a good chance of recovery."
Not all members of the medical community agree with the diagnosis and treatment of chronic Lyme disease.
In 2006 the Infectious Diseases Society of America (IDSA) issued updated guidelines on the diagnosis and treatment of Lyme disease. The most significant changes in the society's updated clinical practices guidelines, originally published in 2000, was the addition of information on additional tick-borne diseases, antibiotic dosage recommendations for high risk patients who do not exhibit Lyme symptoms, and an expanded discussion of so-called chronic or post-Lyme syndromes.
The report's conclusions, particularly with regard to chronic Lyme disease, prompted a lawsuit by the Attorney General of Connecticut that has resulted in an independent review of the IDSA's findings.
IDSA is a professional organization based in Alexandria, Virginia, with more than 8,000 members, including physicians, scientists, and other health-care professionals who specialize in infectious diseases. According to the IDSA, its purpose is "to improve the health of individuals, communities, and society by promoting excellence in patient care, education, research, public health, and prevention relating to infectious diseases."
The IDSA said the guidelines were updated in response to growing concern and confusion about Lyme disease, in order to provide guidance to physicians and patients based on the latest scientific evidence. They were developed by a panel of infectious disease specialists chaired by Gary P. Wormser, Chief, Division of Infectious Diseases and Vice Chairman of the Department of Medicine, New York Medical College, who also was the lead author.
The updated IDSA guidelines contain greater detail in the discussion of post-Lyme disease syndromes. As in the past, the guidelines do not recommend ongoing antibiotic therapy for those with chronic symptoms who have completed the recommended initial course of treatment for Lyme disease.
"After a thorough review of the literature, the panel concluded there is no convincing biologic evidence for symptomatic, chronic Borrelia burgdorferi (Lyme) infection after completion of the recommended treatment for Lyme disease," the guidelines state.
Furthermore, long-term antibiotic therapy may be dangerous and it also can lead to complications for the patient, such as blood stream catheter infection (for those on intravenous antibiotics) and Clostridium difficile colitis (a potentially severe infection of the bowel). Long-term antibiotic therapy may also foster the development of drug-resistant superbugs that are difficult to treat, said one of the panelists.
Dr. Wormser said. "People who continue to have symptoms that persist after appropriate antibiotic treatment for Lyme disease should talk to their physicians about whether the diagnosis was accurate or if they may have a different or new illness to be certain they get the proper medical care."