11/24/13 4:00pm
11/24/2013 4:00 PM
CARRIE MILLER PHOTO | Amber Abolafia of Orient plays with her daughter Dakota, 2, at Old Schoolhouse Park in East Marion, where she believes she was bit by a tick.

CARRIE MILLER PHOTO | Amber Abolafia of Orient plays with her daughter Dakota, 2, at Old Schoolhouse Park in East Marion, where she believes she was bit by a tick.

Between daily naps and popping medicine to help with achy muscles and joints, 25-year-old Lyme disease patient Amber Abolafia of Orient has spent the last six months doctor shopping – looking for a physician who’s truly knowledgeable about her disease.

“It’s scary,” she said. “Our doctors are not informed enough and I don’t think they have the tools to be informed enough. There is just so much more to learn about the disease.”

Her struggle with Lyme led her to join more than 50 other area residents  many of whom also have issues with tick-borne illness – for an opportunity to hear from health experts at a special East Marion Community Association forum held last Saturday at the East Marion firehouse.

Infectious disease specialist Dr. Rajeev Fernando of Southampton Hospital and Jerry Simons, certified physician’s assistant and expert contributor to the national publication Lyme Times magazine, spoke about illnesses common on the North Fork — and answered questions from anxious audience members.

The two have teamed up with Southampton Hospital to start the Tick Borne Disease Resource Center, which seeks to educate both health care professionals and the public about tick-borne illnesses — and the correct steps to take if one gets bitten.

The experts said differences in the way physicians test and treat patients can play a huge role in whether the patient is cured or left suffering and searching for answers.

“I am trying to just educate the local doctors and say, ‘This is what we should be doing,’ ” Dr. Fernando said.

In August, the Centers for Disease Control and Prevention reported an estimated 300,000 new cases of Lyme annually in the United States – a tenfold increase over the previous year’s estimate. Dr. Fernando said New York State leads the U.S. in reported cases.

“[The East End] is one of the worse tick areas in the country,” Mr. Simons said. “People in the area should be the smartest people on the planet about Lyme disease because it’s so bad out here.”

The experts spent most of their time discussing Lyme, which is caused by a spiral-shaped bacteria called Borrelia burgdorferi. The tick’s bite transfers the bacteria, which can cause fever, headache and fatigue and sometimes — less than half the time, according to Dr. Fernando — leaves a distinguishing bull’s-eye rash at the site of the bite.

If left untreated, the infection can spread to joints, the heart, the nervous system and the brain, Dr. Fernando said.

Like many other diseases, Lyme disease comes in different strains — and experts warned those attending Saturday’s forum that not all tests check for all strains. Where patients get tested can also play a role in whether they are properly diagnosed, Mr. Simons said.

Commercial blood testing labs, such as Quest Diagnostics, test only for strains required by CDC and Food and Drug Administration. Mr. Simons suggested instead that people find a lab that tests for almost all known strains of the bacteria, such as one of the labs run by Stony Brook University.

While being tested for Lyme, they said, patients should also ask to be tested for other tick-borne diseases, because ticks can carry more than one disease, potentially giving people what’s called co-infections.

“It’s not unreasonable to ask your physician for a four-panel tick-borne disease test,” Dr. Fernando said.

The test, known more commonly as a TBD4 test, checks for Lyme, babesiosis, anaplasmosis and ehrlichiosis – the four most common tick-borne illnesses in this area, he said. Three of these will show up in tests almost immediately, but it can take up to four weeks for Lyme to register in any of these tests, Dr. Fernando said.

“Unfortunately a lot of doctors aren’t exposed to this and they do the blood test too soon,” he said. This means that some infected patients may walk away without being diagnosed. Should someone get bitten and see any sort of rash, Dr. Fernando said his suggested protocol would be to start antibiotic treatment and “tell your doctor it’s going to take four weeks to do the test.”

Ms. Abolafia of Orient was one of those Lyme disease patients who was tested the second she walked into a doctor’s office – about six days after she believed she was bitten. Luckily, she tested positive, she said.

But because of her ordeal, she’s now worried that she may be in the category of people who suffer from what’s known as chronic Lyme.

Ms. Abolafi a said she has been tested three times for the disease – and has gotten mixed results. In the past six-plus months, despite consulting several different doctors, she said she’s taken only 10 days’ worth of antibiotics, the minimum standard course of treatment according to CDC guidelines.

“If I could give advice to anyone, keep pushing your doctor until you get the care you need,” she said. “It’s never going to get better unless you become your own advocate.”

Dr. Fernando said there’s controversy regarding the treatment guidelines for patients who test positive for Lyme.

CDC guidelines for treating Lyme disease state that patients should be put on antibiotic such as Doxycycline for 10 to 21 days but Dr. Fernando said the guidelines should not be used as the end-all for all cases.

“The patient in front of you is what matters the most,” he said. “It’s important to think outside the guidelines in some cases.”

He said about 25 percent of patients may come back within six months of treatment, some suffering from chronic Lyme disease.

But experts are still fighting over whether this chronic stage of the disease even exists.

“It’s very political,” the doctor said.

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10/09/13 12:00pm
10/09/2013 12:00 PM
DANIEL GILREIN COURTESY PHOTO | A female deer tick.

DANIEL GILREIN COURTESY PHOTO | A female deer tick.

Suffolk County is one step closer to better managing its growing tick population and the resulting health concerns.

The county Legislature passed a law Tuesday requiring Suffolk County Vector Control to aggressively address the increase in cases of tick-borne disease.

Approved 16-0, with one abstention, the bill requires county Vector Control, which is charged with controlling the spread of insect-borne diseases, to submit an annual plan to combat their occurrence. Outlined in the plan should be the measures being taken, work to be done and an analysis to determine the program’s effectiveness, legislators said.

The measure has the support of County Executive Steve Bellone, who was represented by a deputy executive at Tuesday’s meeting and now will sign the bill into law.

In recent years, Vector Control has focused mainly on mosquito-borne illnesses, such as West Nile virus, said county Legislator Jay Schneiderman (I-Montauk), the new law’s primary sponsor. But an individual is 300 times more likely to contract Lyme disease than West Nile virus, according to a press release from Mr. Schneiderman’s office.

Lyme disease is now the most widespread vector-borne disease in the U.S., but cases are often under-reported, according to the Centers for Disease Control.

“Most of us have been impacted in some way by tick-borne disease,” said county Legislator Al Krupski, a co-sponsor of the measure. “This is a problem that seems to be a recent phenomenon and the quicker we act on it to try and address it the better.”

Vector Control officials have about a year to develop a plan, which will be due next October, Mr. Schneiderman said. County residents will not benefit from the plan until it goes into effect in 2015, he said, adding that funding for the plan will be considered in the 2015 budget.

“But I don’t think [the budget] should be driving the train here,” Mr. Schneiderman said. “I think public health should be the main consideration. We’ll figure out what we should be doing and then let’s figure out how to pay for it.”

Mr. Schneiderman said he envisions a comprehensive plan that begins by studying the number of deer, rodents and ticks in the county, to better understand the role each plays.

“We don’t really have a handle on how many ticks there are or where they are,” Mr. Schneiderman said. “They are going to have to start getting counts. That is what Vector Control does with mosquitoes — they have a really good handle and hopefully they will be able to do the same thing with ticks.”

With data in place, he said, a viable plan will follow. He said simply focusing on deer, the target for tick control among many local communities, will not be enough.

“I think a real tick-control program has to go way beyond deer,” Mr. Schneiderman said. “It’s going to get into rodent control, clearing high grass areas and maybe even controlled burning in certain areas. There are a lot of things the plan could include.”

Mr. Krupski said he “would like to see [vector control] focused on more deer control, and to letting people do more effective deer control. Right now what can be done legally is just not effective.”

Some residents have voiced concern that the plan may include aerial spraying, as is done for mosquito control, Mr. Schneiderman said.

“I don’t honestly think that it will,” he said. “There is no product out there that will just kill ticks and I don’t think that is going to happen.”

Both legislators said they will be working closely with representatives from Vector Control as they piece the plan together.

After being bitten by several ticks so far this season and “luckily” not getting sick, Mr. Schneiderman said this new legislation is just the beginning of his work on the issue.

“I am not stopping here,” he said. “My next step is to try to convince the state that this is a health emergency. I want to assemble the people together to make that case to the state so we can get the door open for funding. And I want to correspond with our senators and Congressman Bishop to try and get federal attention to this issue.”

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10/04/13 5:00pm
10/04/2013 5:00 PM

The Suffolk County Health Department will be holding a public hearing Tuesday to listen to concerns from the community regarding how the county is distributing health care resources.

James Tomarken, the county health commissioner, will be present to listen to the public’s comments.

Topics of interest include the Vector Control division’s role in managing tick-borne diseases, a proposed new fee policy for county health centers and a proposal to establish a Long Island Commission on aquifer protection.

A general meeting will take place at 9:30 a.m. with the public hearing to begin at 2:30 p.m. at the Evans K. Griffing Legislative Auditorium located at 300 Center Drive in Riverhead.

A full agenda will be available online on the county website, according to a department release.

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10/04/13 7:59am

DANIEL GILREIN COURTESY PHOTO | A blacklegged tick, otherwise known as the deer tick.

Thomas Feeley Jr. would spend his days in the yard of his Southold home, gardening and watching a small creek that framed a portion of his backyard on Long Creek Drive.

He had scattered a few chairs on the property where he could sit and rest in the sun throughout the day with his small dog, Tobey.

Every evening, as the sun began to set, families of deer could be seen drinking from the creek, his daughter, Denise Feeley-Manarel, recalled as she packed up her father’s home Tuesday morning.

COURTESY PHOTO | Thomas Feeley Jr. (below) of Southold died in August of babesiosis, which he contracted from a tick bite.

Mr. Feeley died Aug. 29 of complications from babesiosis – a tick-borne disease. It is one of six tick-borne illnesses present on Long Island, according to area health experts.

“We don’t know when he got bitten,” Ms. Feeley-Manarel said. “The scary thing is you can be bitten by a tick with babesiosis and not get the bull’s-eye. We think he was sick with this for a week or two before he went to the hospital.”

RELATED: Next generation of sportsmen needed to manage deer population

She said it took four days to get the lab results from her father’s blood work, which confirmed the tick-borne disease. Six weeks later, he was gone.

“The poor man lived 87 years and was done in by a little tick and the complications that resulted from it,” she said. “He was so sick with it that he just didn’t come back.”

According to state Department of Health statistics by county, Suffolk accounts for 49 percent of the state’s babesiosis cases.

Eastern Long Island Hospital, Peconic Bay Medical Center and Southampton Hospital officials have confirmed an uptick this season in patients diagnosed with the disease, according to a previous Suffolk Times report.

Babesiosis is a curable illness spread by the blacklegged tick, otherwise known as the deer tick, said Daniel Gilrein, entomologist at Cornell Cooperative Extension of Suffolk County, in a recent interview.

The tick’s bite transfers pathogens that can trigger a severe anemia in humans, killing red and white blood cells and platelets in the blood — especially in patients who are missing a spleen and have a weakened immune system, said Dr. Gary Rosenbaum, an infectious disease physician with Peconic Bay Medical Center.

But Ms. Feeley-Manarel said that while the disease might be curable if caught early, the North Fork’s elderly population is particularly at risk because of their weakened immune systems.

“We wrote it off,” she said. “He’s old, he’s got arthritis, we thought he just had a virus. The furthest thing from our minds was something as deadly as babesiosis.”

While Ms. Feeley-Manarel said she finds deer to be beautiful animals, she now understands the role they played in her father’s death.

“It’s obvious there is a problem,” she said. “I see deer here every single day. I don’t want everybody to get their guns out, but maybe we could have a longer bow period and start a food bank or something like that.”

Southold’s estimated deer population is roughly 3,500 — or 65 deer per square mile — according to the Department of Environmental Conservation. To control tick-borne diseases like babesiosis, the Centers for Disease Control recommends limiting the population to 10 deer per square mile.

In an effort to combat tick-borne illnesses, county Legislator Jay Schneiderman (I-Montauk) has introduced a new measure to step up pressure on Suffolk County Vector Control, which is in charge of controlling the spread of insect-borne diseases.

The proposed law would require Vector Control to submit an annual plan of steps being taken to reduce the incidence of tick-borne illnesses — including active measures being taken, work that needs to be done and an analysis to determine the effectiveness of the program, according to a recent press release. The bill was approved in committee and is likely to be voted at on at next week’s meeting.

County Legislator Al Krupski has signed on as a co-sponsor of the bill, saying, “Lyme disease is an epidemic on the East End of Long Island. Most of us have been impacted in some way by tick-borne disease. Suffolk County needs to play an active role to control this growing health problem.”

Tests conducted after her father’s death, Ms. Feeley-Manarel said, revealed that he suffered not only from babesiosis but also Lyme disease — a better known tick-borne illness.

“The medical community really has to be very proactive with the elderly community,” she said. “It could be Lyme or something more deadly than Lyme. Lyme you can live with, the rest of them you may not be able to.”

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09/17/13 5:00pm
09/17/2013 5:00 PM
DANIEL GILREIN COURTESY PHOTO | An adult deer tick, which are known to  carry pathogens causing Lyme disease, babesiosis or anaplasmosis. Adult ticks are active in spring and late fall, according to Daniel Gilrein, entomologist at Cornell Cooperative Extension of Suffolk County.

DANIEL GILREIN COURTESY PHOTO | An adult deer tick, which are known to carry pathogens causing Lyme disease, babesiosis or anaplasmosis.

In an effort to combat tick-borne illnesses, county Legislature Jay Schneiderman (I-Montauk) has introduced new legislation to step up pressure on Suffolk County Vector Control, which is in charge of controlling the spread of insect-borne diseases.

The proposed law would require Vector Control to submit an annual plan that indicates steps being taken to reduce the incidence of tick-borne illnesses — including work to be done, active measures being taken and an analysis to determine the effectiveness of the program.

The division has reportedly focused mainly on mosquito-borne illnesses like West Nile, according to a release from Mr. Schneiderman.

Area hospitals reported a spike in tick-borne diseases, including Lyme disease earlier this year.

Nearly 300,000 cases of Lyme disease are reported nationally each year, while 1,000 cases of West Nile are reported, according to the Centers for Disease Control and Prevention.

Lyme disease is now the most widespread vector-borne disease in the U.S., but cases are often underreported across the U.S., according to the CDC.

It is estimated only 10 percent of total cases nationally are reported, CDC officials said.

“Towns and villages are struggling to develop plans to respond to the growing Lyme disease cases,” Mr. Schneiderman said. “The county should be playing a leadership role in prevention.”

County Legislator Al Krupski, a co-sponsor of the bill, called Lyme disease an epidemic on the east end of Long Island.

“Most of us have been impacted in some way by tick-borne disease,” he said in a release. “Suffolk County needs to play an active role to control this growing health problem.”

Mr. Schneiderman said the county has, however, done a good job preventing West Nile.

While mosquito and bird samples have tested positive for the virus, no humans have tested positive for West Nile so far this year, according to the county health department officials.

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10/11/12 2:00pm
10/11/2012 2:00 PM

BETH YOUNG PHOTO | County Legislator Ed Romaine speaking during Thursday’s tick task force meeting in Peconic. Seated are task force members (from left) Dr. Scott Campbell, director of Suffolk County Department of Health Services’s arthropod-borne disease laboratory; Shelter Island deer & tick committee chairwoman Patricia Schillingburg; Empire State Lyme Disease Association president Eva Haughie and DEC special assistant to the commissioner Vincent Palmer.

East Enders who have suffered the brunt of Lyme and other tick-borne diseases had their chance Wednesday night to explain their frustrations to a new county task force charged with coming up with concrete steps to control the spread of the diseases.

County Legislator Ed Romaine convened the 16-member Tick & Vector-Borne Disease Task Force earlier this fall in an attempt to focus on the health crisis facing the East End.

The committee held a public hearing at the Southold Recreation Center in Peconic Wednesday, at which several members of the task force got an earful from local people who’ve suffered from years of chronic Lyme Disease, ehrlichiosis, babesiosis, Rocky Mountain Spotted Fever and other serious illnesses.

Many in attendance said they’ve had difficulty getting doctors to take their chronic symptoms seriously and put them on the long-term antibiotics they need to go about their lives. Still others told stories of years and sometimes decades in which they suffered misdiagnoses before finally being correctly diagnosed with Lyme Disease.

“The insurance companies don’t want to pay for it…. Doctors that know what to do and have the guts to do it are afraid,” said Sue Ulrich of Shirley. “You don’t need any of those degrees to know you are sick.”

“If you’re a tourist, you should come here in a tank and don’t get out,” said Ugo Polla of Cutchogue, who added that ticks abound in vineyards and other tourist destinations. “Have the wine delivered, drink it and get out.”

“It seems like we just keep studying these things. We need action,” said Hugh Switzer of Peconic. “We need support for our supervisor and board for actions necessary to get rid of deer. We have friends who no longer want to visit with us. They say, ‘why would I want to come if every time I go outside I have to check for ticks.’ Our children won’t bring our grandchildren to see us.”

Read more about Wednesday’s tick hearing in the Oct. 18 issue of The Suffolk Times.