Lyme disease forum attracts top tick docs

By Nelson Sigelman - April 27, 2006

A Lyme disease conference and public forum this weekend will feature a panel of specialists in the field of prevention and treatment of tick-related diseases. The event is being underwritten by a Chilmark couple that has experienced the debilitating effects of a tick-borne illness.

The weekend's program will include a conference for Island health-care providers on Friday evening at the Mansion House in Tisbury, followed by a public forum from 11 am to 1:30 pm Saturday afternoon at the Katharine Cornell Theatre. The forum will be moderated by Dr. Bela Matyas, medical director of the Massachusetts Department of Epidemiology.

One of the topics expected to provoke wide discussion at both sessions is the prevalence and treatment of chronic Lyme disease, which can include 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.

Elizabeth and Michael Zane, who contributed the money that made the conference possible, have a deeply personal interest in tick-borne illnesses.

Michael Zane is the originator of the Kryptonite bicycle and automobile lock company. During the summer of 2004 his wife contracted babesiosis, a lesser-known tick-borne disease, and spent nearly two weeks in the hospital gravely ill, following a medical evacuation from the Island.

The Zanes are also part of an ad hoc group of Island property owners known as the Tick Task Force, a group working to reduce tick numbers and one of the sponsors of this weekend's conference along with the Martha's Vineyard Hospital and Dukes County.

The Zanes said that they hope this event will provide Island clinicians and the public with the latest and best thinking about the prevention and treatment of tick borne illness. "Let's spend money on education and prevention rather than emergency medical transports and health problems," said Mr. Zane.

Martha's Vineyard and Nantucket are considered hot spots for tick-borne illnesses. As a result, Island physicians are generally well-versed in the symptoms associated with a variety of diseases.

The ticks most people are likely to pull off their pant legs after a spring walk in the woods are the adult dog, or wood, tick which can carry Rocky Mountain spotted fever, a rare occurrence on the Vineyard. Dog ticks are also known to spread tularemia, sometimes called rabbit fever, a potentially fatal disease caused by the Francisella tularensis bacterium. Over the past several years, an unusually high number of pneumonic (airborne) tularemia cases have been diagnosed on the Vineyard.

The smaller deer tick, which is responsible for infecting humans with Lyme disease, the most publicized of tick-borne illnesses, is less prevalent. Deer ticks are also capable of transmitting a malaria-like disease called babesiosis, and ehrlichiosis (HGE), a disease related to Rocky Mountain spotted fever.

The weekend conference was organized by a steering committee of interested Islanders that included Dr. Ilene Klein, a primary care physician and county associate commissioner for health-care access. "We wanted people to be able to discuss not only prevention, diagnosis and treatment," said Dr. Klein, "but also the long term consequences of Lyme."

Touching on a topic that has no clear answers, Dr. Klein said there is a serious debate about whether chronic Lyme exists or whether there is a post-Lyme disease syndrome. She said the organizers wanted to be certain the panel represented a spectrum of viewpoints and clinical backgrounds.

The panel members are: Dr. Sam Donta, a specialist in infectious diseases with medical offices in Falmouth and Boston; Sam Telford III, associate professor of infectious diseases at the Tufts University School of Veterinary Medicine and well-known Island tick researcher; Dr. Robert Kalish, a rheumatologist at Tufts-New England Medical Center and Assistant Professor of Medicine at Tufts Medical School; Dr. John Halperin, clinical professor of Neurology, New York University School of Medicine; and Dr. Peter Krause, Professor of Pediatrics at the University of Connecticut School of Medicine and Director of Infectious Diseases at Connecticut Children's Medical Center.

Dr. Klein said the Friday evening conference is for clinicians only and would provide an opportunity to discuss advanced topics. More than 60 people have planned to attend including, most of the Island's doctors.

Dr. Klein said that the goal of the public forum, "Is to help people gain an understanding of the true clinical dilemmas that face both clinicians and patients in terms of diagnosis and treatment, particularly in the area of persistent symptoms."

Referencing a spate of heated letters to the editor written on the subject of Lyme disease, Dr. Klein said another goal is to create a more respectful dialogue even when people disagree. "We are excited," she said. "We think it is going to be great."

Rather than provide an open microphone during the forum, organizers have asked people to e-mail questions in advance to drilenejklein@aol.com in order to make the best use of the time.

This week, members of the panel described their interest in the forum. In response to an e-mail from The Times, Dr. Kalish said that with the confusion and controversy that exists in the area of Lyme disease it is an excellent idea to have this type of forum, in which people in the field with different areas of expertise and varying opinions can have a discussion.

To Dr. Kalish, it is especially fitting to have the conference on the Vineyard where Lyme disease and other tick-borne illnesses are so prevalent. He added, "I came to the Island to see rheumatology patients for much of the 1990s until about four years ago and I have a great fondness for the doctors and the community on the Vineyard."

Mr. Telford is also no stranger to the Vineyard, or Nantucket, where he has been studying deer ticks for many years. He said Martha's Vineyard has a real public health problem, perhaps not as bad overall as Nantucket but certainly in the same league as the Cape or Block Island. He said that although the Vineyard is larger in area and has many more people living year-round or visiting than Nantucket or Block, deer ticks are very habitat-dependent.

Not all areas of the Vineyard are equal as far as deer ticks go, according to Mr. Telford. "Chilmark, Gay Head, and Chappy are pretty hot because of wetter habitats that include indicator shrubs like highbush blueberry," he said. "Open fields or pitch pine stands as found in the state forest are really not very good for deer ticks (the ground dries out very quickly), even though a few ticks can always be found. So the key to Lyme on Martha's Vineyard is that because of the great heterogeneity of habitats, there are large spaces where risk is much less. Nantucket and Block are pretty covered with great deer tick habitat."

Mr. Telford said his biggest concern with respect to Lyme on the Vineyard is the potential incidence among Brazilian workers, many of whom work outdoors and are undoubtedly heavily exposed to ticks, and probably will not seek medical attention unless they are very sick.

Reflecting the divergence of opinion that exists regarding chronic Lyme, Mr. Telford said that, for a certain small fraction of Lyme cases, there is a persisting syndrome but whether that syndrome reflects persisting infection is not clear. "I believe that the regular Lyme serology is actually pretty good," he said. "If one has been sick for a few weeks and is negative, then it is most likely not Lyme disease and an alternative diagnosis needs to be entertained. Jumping around and trying "new" tests wastes time that could be better used looking for alternative diagnoses."

Dr. Donta said he has worked with Vineyard physicians and Dr. Klein in the past on Lyme disease cases. He said there is increased recognition of health problems possibly related to Lyme disease.

Dr. Donta said there has been some controversy about whether the symptoms some people have after they contract Lyme Disease is because there is still an infection or it happens as a result of the infection. "Really there is no way to answer that," he said. "My view is that it is a persisting infection because certain antibiotics help it and other antibiotics, and other medications don't help it, so I have to conclude that in the absence of better markers for whether you still have infection or not, that it probably is."

Dr. Krause said he agreed to be a member of the forum because Dr. Klein asked him to do so, and because of the opportunity to discuss tick-borne infection issues on Martha's Vineyard. "I hope to learn from others and to provide some insight regarding these infections, especially some recent work that we are doing to prevent tick-borne infections," he said.

Dr. Matyas said he expects some of the discussion will focus on diagnosis and treatment of Lyme disease and areas of agreement as well as disagreement. "I think it would be very helpful if we can provide some clarity on those areas regarding Lyme disease that are fairly well established as opposed to those that are somewhat controversial," he said. "And in those areas that are controversial, rather than try to come to a consensus, I think it is more realistic to try to better understand the nature of the controversy."