Tag Archive | "Lyme disease"

Noyac Hosts Last Tick Talk of the Season

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Jerry Simons discussed tick-borne disease diagnosis and prevention during a symposium at the November meeting of the Noyac Civic Council. 

By Mara Certic

As the days get shorter and temperatures drop, East Enders sometimes fall into a false sense of security, believing tick season is over for another cold winter. But with the ever-increasing number of tick-borne diseases and infections, medical professionals emphasize the importance of remaining vigilant against the virulent arachnids all year long.

In response to the growing number of infections, State Senator Kenneth P. LaValle convened a tick-borne disease task force last year to search for solutions to the problem, which is particularly prevalent on the East End. An advisory panel for Southampton Hospital’s Tick-Borne Disease Resource Center has come up with a multi-pronged mission to help reduce the number of tick-borne diseases and infections on Long Island and around the world.

In addition to facilitating treatment and educating medical professions about the various diseases carried by ticks, the panel has been charged with educating the public at several informative medical symposiums.

Jerry Simons, a physician’s assistant at East Hampton Urgent Care, gave the last such presentation of the year, on November 12 at the monthly meeting of the Noyac Civic Council.

Mr. Simons has been treating Lyme disease for almost 20 years.

“I saw my first Lyme disease patient in 1995,” he said at the meeting. Although the disease is named after a town in Connecticut, a lot of progress and discoveries made on Lyme disease happened out here on the East End, he said. “So it makes sense for the tick center to re-blossom here,” he added.

One of the difficulties of treating Lyme and other tick-borne diseases, Mr. Simons said, is figuring out what the exact strain of the disease is. Whereas people in the past have been told to look out for bull’s eye rashes, Mr. Simons noted that 30 to 50 percent of people with Lyme disease do not develop one.

“In 2014, like there are different types of flu germs or Epstein Barr, there are also different kinds of Lyme disease,” Mr. Simons said. Some of the literature says there are four different strains, whereas some claim there are as many as 12. According to Mr. Simons, those strains can then have up to four different subtypes of their own.

In addition to the many strains of Lyme, there are also diseases such as babesiosis, IA, Rocky Mountain spotted fever, ehrlichiosis and, most recently, the Alpha-gal allergy to meat.

“Sometimes it’s a matter of checking for the right germ,” Mr. Simons said, suggesting that anyone with a worrisome tick bite should ask for the Tick-Borne Disease Panel 3 work up, which tests for many different strains and diseases.

“But what I need you to remember is it’s not just Lyme disease,” he added.

Several medical publications have recently suggested that the ticks with the highest rate of infection in the world are those within a 50-mile-radius of Shelter Island.

“If you were in North Dakota and got a tick bite it would be a different story,” he said. Mr. Simons advocates getting treated with antibiotics right away, adding that they can prevent further, more serious problems four, eight or 12 weeks down the line. Also, spending $20 or $30 on early antibiotics could save thousands of dollars on blood work.

One of his pet peeves, he said, is when patients find a tick on themselves and wait to have it removed by a professional.  “You need to remove it immediately,” Mr. Simons said. Once removed, the ticks themselves should be taken to a doctor’s office, where they can determine the type of tick, its sex and whether or not it’s swollen, he added.

Inspecting the offending tick is one of the ways doctors can quickly and more efficiently diagnose patients, he said.

The bite of the Lone Star tick larvae, for example, can cause the Alpha-gal meat allergy and also other diseases in some cases. When bitten by an infected Lone Star tick, the alpha gal polysugar gets into the body. Once the enzyme is in your body, eating fatty red meats can cause a delayed inflammatory reaction, similar to a bee sting, Mr. Simons explained.

Whereas for some, the Alpha-gal allergy affects them only when they consume red meat, others can have reactions to dryer sheets, cosmetics, even lanoline strips on razors.

Recent research has shown people with Alpha-gal have very low glutamine levels, Mr. Simons said. Glutamine is one of the most abundant naturally occurring nonessential amino acids.

“You’re hearing it here first,” Mr. Simons said, “the advice is to run—not walk—to the store and get a big thing of glutamine.”

High doses of glutamine combined with six months to a year without any sort of meat contact could perhaps reverse the effect of the allergy, he said.

“It’s like in the ’80s when we were trying to figure out AIDS and HIV—you’re living in history,” Mr. Simons said.

For more information about tick-borne diseases call 726-TICK, or visit tickencounter.org.

Home Prevention

While ticks are most active from May through July, they will remain active until the temperature drops below 32 degrees. While the pests can be hard to avoid, here are some ways to keep ticks away:

  • Mice carry the most infectious ticks, so removing leaf piles and brush and other rodent retreats will help keep dangerous ticks away from the house.
  • Damminix tick tubes can be used to kill ticks on rodents. The product is available online, but DIY-ers can create the products themselves by putting cotton balls soaked in permethrin into cardboard tubes in mouse-infested areas. The mice, in turn, collect the cotton balls for their nests and the permethrin kills the ticks on contact.
  • Ticks are very unlikely to cross a 3-foot-wide wood chip boundary, so putting one around a house can help keep them away.
  • Ticks of all species apparently hate the smell of lavender; so dryer sheets and sprays imbued with the scent can also repel them.
  • Diluted DEET should be sprayed on shoes once a month, to keep ticks away.
  • Natural repellents, such as Buzz-Away can be applied directly to the skin.
  • Experts suggest spraying yards or lawns once a month from April to November, as well. Organic sprays are available from East End Tick and Mosquito Control.
  • Applying permethrin to clothes will kill all ticks on contact. Clothes pre-treated with permethrin are also available.

Tick-Borne Disease Task Force Makes Recommendations

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 By Mara Certic

A report issued last week by the Senate Majority Coalition Task Force on Lyme and Tick-Borne Diseases calls for the formation of a State Department of Health action plan in order to reduce the number of infections and increase detection, diagnosis and treatment. The task force was brought together in October to address the rising concerns about the spread of tick-borne diseases in New York State and included Senator Ken LaValle among its members.

According to the Department of Health, more than 95,000 cases of Lyme disease have been reported in the state since 1986.

Lyme disease is the most common tick-borne disease, but diagnoses of babesiosis and anaplasmosis have increased in recent years as well, the task force found. Suffolk County has the third highest number of cases reported each year in the state.

“We have had nine deaths from Lyme disease or tick-borne diseases [in New York State],” Senator LaValle said in a phone interview on Tuesday. “We think that this needs to be taken more seriously.”

The report states that one of the main concerns when it comes to controlling the tick-borne diseases is that few of the cases are reported. According to the federal Centers for Disease Control, only about 10 percent of cases of Lyme disease are actually reported.

The task force’s report suggested several educational initiatives the state could undertake that would encourage New Yorkers to report Lyme and other tick-borne diseases. A County Learning Collaborative has been suggested to encourage conversations of between counties that have long been troubled by ticks and those that have only recently seen outbreaks of these diseases.

The task force also suggested a general statewide educational campaign, as well as improving continuing medical and veterinary education about the topic.

This year, for the first time, the state Senate has secured funding in the state budget exclusively for managing tick-borne diseases. “For the first time, we’ve got some money and we’re going to be a pilot for the state with the 4-poster program,” Senator LaValle said. The 4-Poster systems work by attracting deer with food, and then applying the insecticide permethrin to the animals when they approach to feed.

Installation of these devices on Shelter Island and in North Haven will take place “A.s.a.p.,” the senator said. “We believe it works. We want to get information that we can share statewide.”

North Haven is included because “it’s small enough so we think we can do a good job in putting them there,” said Senator LaValle.

A re-evaluation of diagnostic testing has also been recommended, as has a review of medical insurance to minimize coverage limitations regarding tick-borne diseases.

The Senate has also taken legislative steps to deal with this problem; one piece of legislation, which has passed in both houses, ensures that no physician will be brought up on charges of misconduct based upon their recommendation of a treatment that is not universally accepted by the medical community.

“There have been some physicians that have used long-term antibiotic to treat Lyme disease,” explained Senator LaValle. “This was not a mainstream use and so some physicians were brought up before the health committees for medical misconduct.”

Senator LaValle said the Senate passed a resolution on Friday, June 20, calling on the federal government to increase funding for Lyme and tick-borne diseases. “Our resolution talks about two things,” he said.  “Number one: we need the CDC to treat this as a more serious illness. Number two: we could use some help with funding.”

Tick Control Services

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It would be nice if all the ticks would disappear at the end of the month of May, which also happens to be Lyme Disease Awareness Month, but that is not going to happen.

But Brian Kelly, the owner of East End Tick & Mosquito Control at 214 North Sea Road in Southampton, said steps can be taken to decrease the number of tick-related illness on the East End.

“It seems that the polar vortex and freezing temperatures did not kill off the ticks as many had hoped,” Mr. Kelly said in a press release. “I have flagged for ticks a few times over the past weeks and the population has not decreased.”

He advises clients to set up a schedule as early as possible to treat their property to reduce the incidence of Lyme and other tick-borne diseases.

East End Tick & Mosquito can be reached at (631) 287-9700, 324-9700 or 765-9700.

Lyme Disease Bill Advances

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By Stephen J. Kotz

Assemblyman Fred W. Thiele Jr. announced this week that the New York State Assembly has passed a bill he co-sponsored which would protect licensed physicians who prescribe long-term antibiotic therapy for Lyme disease from disciplinary action by the New York State Board of Professional Medical Conduct.

Throughout New York and East End of Long Island, there has been a dramatic increase in Lyme disease cases, which are often difficult to test for and even harder to treat. The bill would protect health care professionals with the authority to prescribe medication from disciplinary action against solely for prescribing, administering or dispensing long-term antibiotic therapy to a patient clinically diagnosed with Lyme disease.

“The extent and severity of the Lyme disease cases on the East End has escalated to the point of a public health crisis,” said Mr. Thiele in a press release. “Physicians should not be afraid to offer proper treatment. Early treatment can save lives.”

A senate version remains under review in that chamber’s Health Committee.

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!”