Island Takes Number One Spot in State for Lyme Disease Rate

By IAN FEIN

When it comes to Lyme disease on the Vineyard, either you've had it or you know someone who has.

The Health Report of Martha's Vineyard confirms what most Island residents have known for some time: Lyme disease, a debilitating bacterial infection transmitted by deer ticks, has reached epidemic levels on the Vineyard.

The problem is particularly profound up-Island, where 37 per cent of Chilmark residents and 34 per cent of West Tisbury residents said they have had a documented tick-borne disease.

"No question about it: there are places on the Island where Lyme disease is quite common," said Dr. Russell Hoxsie, a retired Vineyard physician who pioneered diagnosis and treatment of Lyme disease on the Vineyard 25 years ago. "The term epidemic is a little excessive to some people who figure, ‘Well it's one of those things on the Vineyard that you have to deal with.' But if it was polio there would be troops all over the Vineyard trying to figure out how to stop it."

The health report is a scientific study of health and health behaviors in the adult population on the Vineyard.

The study found that Islandwide, one in five full-time residents said they have had a documented tick-borne disease. More than 12 per cent of full-time residents and seven per cent of part-time residents said they have been diagnosed or treated for Lyme disease.

Island Health Report director Dr. Diane Becker - a professor of medicine at Johns Hopkins University in Baltimore, Md. - said that although the Lyme disease findings were not the most surprising aspects of the health report, they were certainly some of the most dramatic.

Dr. Becker said the results of the report's survey indicated what many people had been telling her: Lyme disease incidents on the Vineyard are significantly higher than those reported to the state.

"The state only counts numbers that are reported by Vineyard doctors," Dr. Becker explained. "Some people might have brief exposures and then leave the Island, so they're not captured in numbers. Others might be going off-Island for care. But we may be looking at a real gross under-reporting of the disease."

Experts agree that Lyme disease is notoriously under-reported. A Columbia University psychiatrist conducting a study on the Vineyard two years ago estimated that only one in 10 cases is actually reported to the public health agencies.

"The sad thing is that reporting has always been under," Dr. Hoxsie said. "In the past I reported almost as many Lyme disease incidents in my own single practice as the state reported for the whole Island. Obviously the incidence of it was higher than anybody realized," he said.

"Reporting is usually the last thing a doctor's office has time to do, but I think reporting has been getting better, so that will reflect in a higher number of cases," Dr. Hoxsie said.

In fact the cases reported statewide have exploded in recent years. Between 1990 and 1995 the statewide incidence hovered at around 200 cases per year. But between 1997 and 2002 the reported cases increased sixfold, from 300 to almost 1,800 per year.

The statewide incidence of Lyme disease dropped to about 1,500 in 2003, but Dukes County cases jumped over 55 per cent. The increase was enough to put Dukes County ahead of Nantucket for the most cases per capita in the commonwealth.

With epidemic levels of infection on the Island, some question whether the Vineyard community is doing enough to address the disease.

However, the Island Health Report found that almost 90 per cent of full-time residents and more than 75 per cent of part-time residents said they receive educational information about tick-borne diseases while they are on the Island.

"My experience as a private person is that awareness on the Vineyard is much higher than on the mainland," Dr. Becker said. "I get on the ferry and see tick signs everywhere. There's no question in my mind that physicians here are very, very aware of it and know the different types of treatment. Island doctors are probably much more likely to employ antibiotics than the average clinician is."

Dr. Hoxsie agreed, but said that diagnosing the disease is still difficult for Island doctors.

"Doctors here on the Vineyard and Nantucket probably know as much about clinical Lyme disease as anybody in the country," he said. "And everyone takes it quite seriously. The problem lies in the diagnosis, because there isn't a good test right off the bat. It is estimated that the rash does not appear in 25 to 30 per cent of infected people."

Aside from the telltale bullseye red rash that can appear within a few days of an infected tick bite, doctors do not have a clear-cut diagnostic test for Lyme disease.

Chilmark resident Susan Mosler began experiencing some of the characteristic Lyme symptoms - such as brain fog, headaches and neck and shoulder pain - in 1995, but went undiagnosed for another eight years. Time and time again she tested negative on the commonly used ELISA blood test and was told that nothing was wrong; finally a specialist in New York administered the Western Blot test in April 2003 and she tested positive.

"Why do people have to go off-Island to seek treatment from Lyme-literate doctors?" Mrs. Mosler asked in a letter to the Gazette this summer. "Why are Island doctors continuing to depend on unreliable testing?"

Mrs. Mosler's experience falls into a category some Lyme experts now refer to as chronic Lyme disease, where patients exhibit persistent symptoms that often recur years after standard treatment.

However, as with the discrepancies in diagnostic testing, doctors do not unanimously recognize chronic Lyme disease.

"The mainline authorities question the authenticity of chronic Lyme disease, which creates a huge amount of anger and dissension among those who believe it is a real thing," Dr. Hoxsie said. "The position of many doctors has been ‘if you catch it early enough it's not a problem,' but there's a lot of information that indicates there might be a real lasting effect to the central nervous system and arthritis," he said.

"A lot of that hasn't been spelled out, and in some areas it's been politicized, but there's a real need to do something," Dr. Hoxsie said. "There's a vast difference of opinion how to deal with it, which will take some time to sort out."