Tag Archive | "Lyme disease"

Back to the Woods

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Ticks have been a costly burden to the great majority of people who live on the East End, who rack up millions in health bills annually fighting diseases like Lyme and babeseosis. This is not to mention the physical suffering these diseases wreak on their victims: arthritis and joint pain, fevers and, quite likely, memory loss.

And for those of us who hope to avoid contracting the disease in the first place, there is the loss of the pleasure of living here: hiking, bird watching, even gardening become fearsome activities when you wind up plucking clinging ticks from your limbs.

All of this is to say that the residents of North Haven deserve a shot at what appears to be an effective way of reducing the tick population. Village residents on Tuesday implored the village board to take on a four-poster program that has been successful on Shelter Island. It’s expensive — about $1 million, according to sources — but, considering the personal expense of local residents who have dealt with treating tick-borne diseases, probably worth the investment.

Using North Haven as a control, Shelter Island was evidently able to reduce ticks by about 90 percent over four years. That’s a remarkable accomplishment. And one we imagine has Shelter Islanders enjoying the outdoors again.

David Roth

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web convo Roth_David_oo1

By Candace Sindelman

The Sag Harbor summer resident, co-chair of the Tick-Borne Disease Alliance (TBDA), and victim of Lyme disease talks about the “TBDA Diagnostic X Prize,” a global competition to develop a fail-safe diagnostic tool for Lyme and other tick-borne diseases.

What inspired the TBDA to team up with the X Prize Foundation?

One of the biggest challenges for patients with Lyme disease is lack of a good diagnostic tool. As a result, people don’t get diagnosed as early as they should. We want to eradicate the disease and promote awareness, and through better diagnostic tools make a big dent in relieving human suffering that comes from the disease. We have been working with the X Prize foundation for about a year.  They were so successful with their contest to jump start the commercial space industry, taking a small amount of money and leveraging it. They now have a focus in solving other world problems. Speaking to them they recognized how much suffering and confusion has come out of this disease and developed a competition. The winning prize could be $5 million, $7 million, 10 million, I don’t know yet. But it will be a large entrepreneurial opportunity and a way [for the winner] to harness the power of the market. Dozens have already contacted us to participate since they all think they have the greatest test since sliced bread. It’s terrific, it’s great competition.

What are the challenges in constructing a competition like this?

Defining what the competition is. In our case approximately 30,000 people are being diagnosed each year in this country, and a lot more cases aren’t reported. There’s a common belief in the Lyme community that a lot more people are sick than are captured by current testing technology whether due to an individual’s immune response or time the test is given. You figure the test that wins the competition will not only capture the same 30,000 but also all the other people that are ill and not being treated.

The second hurdle is to come up with a test that has the benefit of being tested on a lot of samples. One question is how do we get enough samples of the cohort population to test diagnostic tests?

The third hurdle at the end of the competition is that the best practices are used and there is the highest quality sample set. It’s critically important for the test to work, but that is not enough. The test should work for the masses, be cost effective, accepted by the medical community and replace the current government standard for testing that is accepted by insurance. It’s ambitious, but you have to think big.

Why do you think there is less awareness about Lyme disease than other diseases?

There is often a West Coast perception that this is an East Coast disease and that is not the case. I don’t know why there hasn’t been more awareness, and that is a big part of what the Tick-Borne Disease Alliance is trying to do. The X Prize Foundation markets the issues and brings a level of credibility.  I’ve been contacting major news networks and people I know. It’s been challenging because a lot of the stories have been done before. But I think as more people are diagnosed with the illness we’ll start to hear about more stories.

The Damage Lyme Causes

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By Karl Grossman

“We were just totally overwhelmed by it that we didn’t want to wait for the full festival to show it,” explained Jacqui Lofaro, founder and executive director of the Hamptons Take 2 Documentary Film Festival, to a full audience at LTV Studio 3 Cinema in Wainscott last month to see “Under Our Skin.”  She added: “It peels away the layers of what is an epidemic.”

The documentary is about Lyme disease.

It’s powerful, the winner of 20 film festival awards. The New York Times called it “heart rending” and stressed how it “takes aim at the medical establishment.” It takes aim and scores a bull’s-eye hit.

“Under Our Skin” is a kind of health counterpart of “Inside Job,” the 2011 Academy Award-winner for best documentary. “Inside Job” depicts the economic crisis we’ve undergone as a colossal crime perpetuated by greedy Wall Street corporations linked to and protected by figures in the federal government. “Under Our Skin” depicts a similarly colossal crime involving health care.

It documents how desperately needed treatment for long-term Lyme disease sufferers is being discouraged by health insurance companies linked to figures in the medical establishment —including physicians with whom they are connected financially.

Not only do these forces take the position that extended care of Lyme disease victims is unnecessary, holding that a few weeks of treatment with antibiotics is all that’s needed, but the film exposes how dedicated doctors who have provided needed long-term care have ended up being severely punished by the medical establishment.

It shows how the health insurers don’t want to pay for long-term care of Lyme sufferers, so our medical system has been twisted to claim such care is not needed and doctors who provide it have been losing their medical licenses. A huge scandal is exposed.

If Lyme disease is detected early, several weeks of treatment with antibiotics will, in most instances, take care of it. But, as the documentary relates, early detection is problematic. About half of people bitten by a tick carrying Lyme don’t develop the tell-tale bull’s-eye rash at the site of the bite. And tests for the disease are often unreliable.

Thus many people end up with chronic Lyme disease.

“Under Our Skin” presents a variety of long-term sufferers. The documentary follows the history of these victims, from their excruciating physical circumstances—“Pain, pain, pain, relentless pain!” exclaims one—to their care by the brave doctors who treat chronic Lyme sufferers. And, most importantly, it shows how through this long-term care they beat this hellish disease.

The documentary, produced and directed by Andy Abrahams Wilson, provides interviews with many of these doctors and presents footage of medical board proceedings to take away their medical licenses.

It examines what is behind this outrage including focusing on a panel of the Infectious Diseases Society of America which issued a key report calling for no long-term antibiotic therapy for Lyme. This report has been used by medical boards and other entities of the medical establishment to penalize doctors who provide care for chronic Lyme sufferers. The documentary notes the fiscal connections of six on this 14-member panel to health insurance companies and other conflicts of interest involving members.

After the 86-minute film was screened, there was a panel discussion at the LTV Studio on September 16 that included Dr. Joseph J. Burrascano, Jr. of Water Mill. He had been a top Lyme disease physician on Long Island providing treatment to chronic sufferers at his office in East Hampton, and is featured in the documentary. New York State health authorities took action — unsuccessfully — against Dr. Burrascano for his caring for long-term Lyme victims. His office is now closed. But he has gone on to be a major figure nationally and internationally in Lyme disease research.

Dr.  Burrascano commented that Lyme is not only a medical malady but also a “political disease” considering the “corruption” involved in the push against proper treatment when it becomes chronic.

For more information about “Under Our Skin” — including obtaining an inexpensive DVD copy for yourself  — visit www.underourskin.com

Tick Talk

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By Claire Walla

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!”