“It’s been a crazy year for ticks,” George Dempsey, M.D., said at his East Hampton office late last month. “Several new cases a week.” Dr. Dempsey is now participating in an international research study of Lyme disease. “I’m excited to start getting some results. I think after the summer we will have some preliminary information. The more info we get the better.”
Working in the office formerly occupied by Dr. Joseph Burruscano, whom he called “the Holy Grail of Lyme disease,” Dr. Dempsey said, “We have 10 subjects . . . it would be nice to get 20.” In order to take part in the study, patients need to have a “brand-new case and a fresh new rash.” After a visit with Dr. Dempsey — with the tick, if possible — patients can be treated by whomever they wish, he said.
Not only has the doctor noted an increase in Lyme cases this year compared to previous years, he has detected an increase in other tick-related infections. He has also noticed that those with the “bull’s-eye” rash are tourists more often than year-round residents. He guessed that “many of them probably go back to the city and don’t know what is going on. The population has increased out here,” he said, and many people “are not aware of prevention measures.”
“I couldn’t walk, I couldn’t really hear,” said Marissa Fanelli, who lives on Shelter Island and has had Lyme disease and related infections since she was 15. Experiencing severe vertigo, fatigue, and pain because of nerve damage in her throat and ear in her 30s, she went to “doctor after doctor,” who suggested she had multiple sclerosis, lupus, and even a brain tumor before she was finally diagnosed with bartonella, a tick-borne disease, after meeting a facial-pain specialist while attending dental hygienist school in New Jersey.
For years, tick-related illnesses have been misdiagnosed as other diseases with similar symptoms, such as loss of facial muscle tone, severe headaches, neck stiffness, and shooting pains.
“If left untreated, it can result in severe debilitation and death,” warned Jesse A. Stoff, M.D., who spoke about Lyme to a little over 20 people at the Wild by Nature market in Hampton Bays last month. He has seen the complexities of the disease in the several new cases he encounters weekly at the East End Wellness Center in Riverhead. Dr. Stoff showed slides of bacteria in the spirochete family, explaining that they are hard to kill because of phased life cycles in which it lies dormant inside cells.
Regarding other common tick-borne illnesses, like babesiosis, bartonella, and ehrlichiosis, Dr. Dempsey said, “If there are 100 with Lyme disease, 30 will have other diseases as well.”
Charlie Mattson of Shelter Island, who has babesiosis, said in an e-mail message that the infection not only made him “feel like s*** for over a month,” but also had a strange, and increasingly common, life-changing effect: “I can no longer eat red meat,” he said. When he does, he vomits and sweats for three days. Some doctors think the symptom results from developing an allergy to animal protein. Mr. Mattson now has to “watch everything I eat, and most barbecues don’t have much in the way of chicken.”
Because there are several strains of bacteria with different protein patterns, Dr. Stoff explained, all tests don’t cover all variations.
“The lab tests are not precise,” Glenn Goodman, D.C., of Sag Harbor said. “Cutting-edge doctors will diagnose from symptoms, not lab tests.”
Dr. Stoff believes that “the ultimate test is a culture,” but the culture is slow-growing, and it can take up to five weeks to obtain results.
Bringing the tick along to the doctor’s office is helpful, Dr. Dempsey said. “If we know what we’re looking at, it saves a lot of grief. Many ticks are not a problem . . . just because they’re small doesn’t mean it’s a deer tick. It can be a baby tick.”
“I haven’t heard of any Lyme cases that are fatal,” he said. But other tick diseases and co-infections can be. He said ehrlichiosis is the worst, but that babesiosis can be very severe as well. “They are so sick,” he said of people with ehrlichiosis, which “blood work doesn’t always pick up. . . . I’m tipped off just by seeing them, but it is treatable.”
The Cost, the Numbers
Even with an IV for aggressive antibiotic treatment, Ms. Fanelli still suffers from constant nerve pain, fatigue, and brain fog (which she called “Lyme brain”). “The cost,” she said, “is ridiculous.” Last year, she spent more than $26,000 in medication alone, not including weekly blood tests and doctor visits. “Insurance companies don’t pay without a positive test,” she said. “We have to fight for better testing.” From her research and experience, she said, “most Lyme tests are negative.”
Working to educate herself and help others, Ms. Fanelli attends conventions held by “Lyme-literate doctors” and has traveled to Washington, D.C. “It’s horrific,” she said of the long-term symptoms, which in her support group of “Lymies” range from eye problems and arthritic pain to immune system disorders and even permanent paralysis. “It’s a lot more serious than people think. This time last year, I didn’t think I was going to make it.”
Ms. Fanelli found that she needed help from the Tick-Borne Disease Alliance, which supports initiatives to find cures and raises money for health practitioners who want to be educated about the latest research and co-infections.
Dr. Dempsey suggested donations to TimeforLyme.org for research into chronic Lyme conditions. “We have some great technology,” he said. “We can distinguish DNA by means that we couldn’t before, to find the genetic sequence down to the exact nucleic acid. . . . Ticks carry numerous diseases,” he said, “I don’t make many assumptions.”
The number of Lyme disease cases must be confirmed by a lab, Dr. Dempsey said, as it is a reportable disease, but only Suffolk County as a whole is tabulated: At a rate of 1,000 per two million people, the numbers don’t reveal the intensity of infections on the East End, particularly since in Suffolk “half a million never get near a tick.” He said it was essential to find better ways of diagnosing and identifying all diseases in ticks.
When a Tick Is Found
Although many ticks are simply too small to be detected, if a tick is found on the body, “safe removal is important,” Dr. Stoff said. Some recommend using iodine or olive oil to help release the tick’s grip on the skin, he said, but removal should involve tweezers. “Grab it just below its rear enlarged part, as close to the head as possible. Pull it straight out in one piece with gentle traction” while trying to avoid squeezing the blood of the tick into your system.
There are several schools of thought on treating Lyme disease, Dr. Stoff said. “If you live in a high-risk area, my recommendation is to take the antibiotics. . . . I’m not a huge fan of drugs in my practice, but I have not found any research indicating anything besides an antibiotic that can kill the bacteria.”
“It’s critical to pile in tons of probiotics,” he added. However, “ongoing antibiotics will not work,” Dr. Stoff said, for what he called post-Lyme syndrome — symptoms virtually identical to the initial illness but that appear after Lyme is successfully treated. “There are tests for post-Lyme syndrome which look at inflammatory markers in the blood.”
Dr. Stoff’s treatment plan, designed to “get the immune system back,” often includes progressive allergy desensitization to stimulate the balance of fighter T-cells. He also recommends supplements, including fish oil and vitamins C and D. He said there was a “huge difference between natural and synthetic stuff.” Diet, digestion, sleep, and avoiding stress are crucial.
Dr. Goodman uses herbs that “have extensive historic application as anti-microbials, and we also use homeopathic remedies.” His goal is to use remedies that provoke “regenerative nutritive action” to re-establish the immune system. Dr. Goodman has a practice with his wife, Dr. Suzanne Kirby, that offers alternatives and complementary approaches.
“I am not against the use of antibiotics,” he said. “However, there are instances where they are inadequate or ineffective.” He explained that in addition to killing bacteria, “the remedies help the cell to both eject the stored toxins and provide it with nutrients to increase the cell’s function.”
In Dr. Dempsey’s office, if a patient has a rash, “call it Lyme and treat it.” He said that most doctors will follow standard infectious disease guidelines, with antibiotic treatment ranging from 10 to 21 days, depending on the size of the rash and the severity of the symptoms.
Dr. Jerry Simon, who used to work with Dr. Burruscano, has a practice in that office as well, offering alternative treatments. “We are trying to treat it from all sides,” Dr. Dempsey said. “It is an art, leave it to us.”
According to Dr. Burrascano’s Web site, “Despite antibiotic treatments, patients will not return to normal unless they exercise. . . . A properly executed exercise program becomes part of the treatment, as it can actually go beyond the antibiotics in helping to clear the symptoms and to maintain a remission.”
Prevention is something all residents could be better acquainted with, Dr. Dempsey said — wearing clothing treated with permethrin designed to withstand 60 wash cycles, for instance.
“Stay out of the high grasses,” Dr. Goodman said, “and do the tick checks.”
Dr. Stoff warned against “dogs and cats that go outside and then come inside and bring ticks. . . . You can get Lyme disease from your own bed.” He said those with pets should have them wear tick collars and treat them with tick dip. “Do not let them into your bedroom.”
Dr. Dempsey’s long-term study is open to every age and gender, as long as participants have a rash, which he will biopsy. The organisms in the skin are analyzed for types and strains, and blood is drawn to be sent to a laboratory in California — “the only one in the world that does it,” he said. The research has been funded by a grant from the National Institutes of Health and sponsored through the State University of New York, the Rockefeller Institute, and the New Jersey School of Medicine. The study is being replicated near John Hopkins University in Baltimore and also in the Midwest.
Another way to help, according to Dr. Dempsey, is to push for financing for the United States Department of Health and Human Services. “It does not have the funds,” he said. “Science, that’s what I am into. We still have a lot to sort out.”