This is the first installment of a two-part account of a forum on tick-borne illnesses in Sag Harbor last week. Part two will appear next week.
Bitten by a tick as a child during a summer stay in Bridgehampton, Ally Hilfiger began experiencing full-blown flu-like symptoms and joint pain by age seven. Over the next 11 years, she was diagnosed by different doctors with diseases ranging from arthritis to fibromyalgia and multiple sclerosis.
“I spent a lot of my life in what is called the Lyme Fog,” Ms. Hilfiger told an audience of 100 people attending a forum on Lyme and other tick-borne diseases in Sag Harbor last Friday. “Nothing helped with the pain or the disorientation.”
At age 19, she saw a psychologist in Connecticut who said “this sounds like Lyme.” Earlier blood tests for Lyme, she recalled, had been “marginal or inconclusive.” With this diagnosis, however, “which included a co-infection” with babesiosis, she embarked upon a seven-year regime of antibiotics and IV drips.
She has been symptom-free for the past year. “I believe I went through this so I can stand before you and spread this message,” she said. “You must be an advocate for this disease. You must also know that tests can be wrong and doctors can make mistakes. You know your body and when things aren’t right you need to trust your instincts.”
The forum, “Lyme Disease in the Hamptons — What You Need to Know,” was presented by Time For Lyme, Inc. on August 19 at Bay Street Theater. Four panelists provided detailed information on the disease, including updates on the latest research, common misconceptions, prevention strategies and a personal story of mis-diagnosis.
Time for Lyme is a non-profit organization based in Greenwich, Connecticut, the mission of which is to fund and promote outreach for Lyme and other tick-borne diseases. According to co-founder Diane Blanchard, the group is dedicated to increasing awareness of the diseases through education and prevention programs.
The purpose of Friday’s program, Ms. Blanchard told the audience, was “to introduce you to some very important resources right here in your own community.”
The panelists included George P. Dempsey, M.D., a family practioner in East Hampton who has been studying Lyme among his East End patients since 2000; Darin G. Wiggins, M.D., chairman of the Department of Emergency Medicine, Southampton Hospital; Benjamin J. Luft, M.D., an academic physician, researcher and chairman of the Department of Medicine at Stony Brook State University, who is involved in research on the disease; and Ms. Hilfiger, the Time for Lyme spokesperson who told of her long struggle with the disease. The panel was moderated by Dr. Luft.
“My goal is to make Lyme disease manageable for those who live out here,” said Dr. Dempsey. While Lyme was first diagnosed in 1975 in Lyme, Connecticut, Dr. Dempsey said that records show that a Dr. John Walker wrote about Lyme-like symptoms on an island off the coast of Scotland in 1764. And Pliny the Elder, who lived between 23-79 A.D., wrote “Ticks: the foulest and nastiest creatures that be.”
There are now some 10 tick-borne diseases that have been identified and at least 32 percent of infected ticks carry more than one pathogen, making co-infections like Ms. Hilfiger’s very common, Dr. Dempsey said. Spring is the most active time for nymphs and is the time, he said, “when we see the most disease.” Nymphs tend to be down low, in leaf mulch and other warm, moist areas. Adult ticks, on the other hand, are capable of jumping and are often found in high grass or on animal trails. “They have a highly developed sense of smell and wait for an animal, such as a deer, to come by and then jump on it.” In general, ticks do not like dry environments, windy settings, beaches, rocks and pebbles, which is a good list of landscaping “do’s” that will help minimize the tick population on a property.
Through his highly graphic slides, Dr. Dempsey sought to reassure the audience that “not every insect bite is a tick bite and not every tick bite carries disease.”
A tick bite rash usually doesn’t hurt, it is not that itchy, the area tends to be warm and the bite site gets progressively larger. “If the rash lasts more than two or three days and is larger than a silver dollar, then it could be a tick,” he said. While the bull’s eye rash is believed to be the hallmark of Lyme, Dr. Dempsey was quick to point out with slides that there is a wide range of rash-like manifestations.