In case you hadn’t heard, fashion designer Ally Hilfiger — daughter of famed fashion icon Tommy — was in Sag Harbor last Friday, August 19. But it’s not a story the tabloids picked up on.
“I had Lyme disease fro 19 years and was undiagnosed for 11,” Hilfiger told a crowd of nearly 100 people who had gathered inside the Bay Street Theatre that afternoon. She was among four speakers — including physicians Dr. George Dempsey, Dr. Darren Wiggins and Dr. Benjamin Luff — who had come for a forum put on by Connecticut-based non-profit Time For Lyme.
Above (from left to right): Dr. Darren Wiggins, Ally Hilfiger and Dr. George Dempsey.
As isolated heads in the crowd nodded in empathy, Hilfiger (now 26) explained that she believes her case of Lyme went back to when she was seven-years-old and spending the summer in Bridgehampton. She had been bitten by a tick, but it hadn’t caused a bulls-eye rash.
Even so, “I had fatigue and joint pain, and eventually it turned into confusion,” she said, her brow furrowed. “Lyme disease had crossed the blood-brain barrier. I spent a lot of my life in ‘the fog.’”
She went on to say that she saw several specialists who misdiagnosed her case as multiple sclerosis and fibromyalgia, among other diseases. Finally, it was a specialist in Boston who treated her for Lyme and for seven years she was on antibiotics and IV drips.
“Today, it’s been a full year since I felt completely better,” she said.
The purpose of the day’s forum, she continued, was to give the East End community the impetus to act if symptoms of Lyme crop up.
“I want you guys to know that your tests can come back wrong,” she said. “You have a right to follow your instincts. The symptoms you are feeling are real.”
Dr. George P. Dempsey, who runs a family practice in East Hampton, said he’s “fascinated” with studying and learning more about Lyme disease, which he frequently treats at his practice on Pantigo Place.
Picking up where Hilfiger left off, he tried to fill in the details of tick behavior and anatomy, both of which he said are important for East End residents to be aware of so they know what to look for and what to avoid when it comes to the small, black critters. He explained that ticks typically have a two-year lifecycle and are more likely to carry Lyme in their second year, after they’ve had the opportunity to be exposed to more white-tailed deer and mice, where they pick-up the disease.
“About a third of ticks have more than just Lyme in them,” he said.
Dr. Dempsey went on to explain that ticks also have a sense of smell, which means they know when you’re around. “They smell animals and they like to go on trails,” he said, adding, “Ticks know where to go.”
The East End carries three types of ticks: deer ticks, dog ticks and Lone Star ticks. While he said the latter do not carry Lyme, they can be infected with a whole host of other diseases: anaplasmosis, ehrlichiosis, babesiosis, powassan virus, tick fever and Southern Tick-Associated Rash Illness (STARI) among them. “Now we have to figure out how many people with Lyme disease actually have other infections.”
For physician Darren Wiggins, who is the chairman of the department of emergency medicine at Southampton Hospital, Lyme is more prevalent than many people believe. He said Southampton Hospital treats 24,000 patients a year for the disease, most of these cases occurring in the summer months.
But, Southampton physicians have been trained to look for and test for Lyme, he went on. Regarding a symptom like facial nerve palsy, he said, “out here it’s Lyme disease until proven otherwise. In [other places like] Arizona, it’s not.” Meningitis could also be Lyme disease, he added, which is why “we do a lot more spinal taps than most ERs do.”
Lyme is easily treated in its early stages with antibiotics. It’s only when the disease progresses to stage three that it becomes hard to diagnose. (He said Lyme characteristics bear an uncanny resemblance to syphilis, and Babesiosis looks very much like malaria.) That being said, he cautioned people to take preventative action to avoid the disease progressing into stage three.
Increased fatigue and muscle pain could be Lyme, he said. (He emphasized that coughing, stuffy noses and diarrhea are not typically Lyme symptoms.) “Most people will also get a rash [if they have Lyme], and that’s usually when the tick is long-gone,” he said. “It’s typically about the size of a silver dollar. If it’s smaller, it’s probably not Lyme disease.”
Like Dr. Dempsey, Dr. Wiggins said this in no way means people should avoid the outdoors, even heavily wooded areas; but, they should proceed with caution. “Avoidance and prevention is 90 percent of what we’re doing,” he went on. “You have to strip to do a tick check. You have to check every crack and cranny, so do it with someone you love because they have to look everywhere.”
Dr. Benjamin Luff, whose interest in the disease hinges more on the research side of things, did say that he’s developed a vaccine that is now being tested in Europe. (While the FDA approved a vaccine in the U.S., it was only on the market from 1998 to 2002, when it was withdrawn by the manufacturer after some of those who got the vaccine claimed it caused health problems.)
“We believe it will be effective against all strains of Lyme disease,” he said, adding that he will know the results of the study in about three years. But already, early tests look promising: “Certainly in mice it’s really great!”
