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Dr. Benjamin Luft

Stony Brook University Hospital. File photo

Most people only think about Lyme disease when taking a hike in a park, but for many doctors, the condition weighs heavily on their minds every day.

Dr. Benjamin Luft, director and principal investigator of Stony Brook WTC Wellness Program, is one of those doctors. He is currently working on two clinical studies examining the disease. One involves those who continue to present symptoms after being treated, and the other study involves Latinos on Long Island who work in the landscaping and agricultural fields.

In a recent phone interview, Luft said the clinical study involving Latinos is a straightforward one, where the aim is to help a population that has been underserved and understudied due to their work schedules. The other study is more involved.

After being bitten by a tick infected with a bacterium called Borrelia burgdorferi, many people with a bull’s eye rash or flulike symptoms may receive treatment and feel better; but there are those who will continue to suffer for a prolonged period, even years, with a variety of complaints like aches, pains and brain fogginess. Luft said at times there may be no clear signs of the disease in the body, but doctors may find evidence of it after thorough neuropsychological exams that can detect subtle abnormalities.

Dr. Benjamin Luft is one of the doctors at Stony Brook Medicine looking for answers when it comes to those who continue to suffer from Lyme disease after treatment. Photo from Stony Brook Medicine

“This study is really geared toward diagnosing and to find ways to be able to monitor the disease,” Luft said, adding in the future his hope is to conduct studies testing new ways to treat Lyme disease.

The doctor said it’s essential to receive a diagnosis because if Lyme disease is left untreated, it can lead to joint swelling, arthritis, neuropathies, meningitis or cardiac problems.

When Stony Brook University recently began making a more significant investment in its imagining facilities, Luft said he saw a chance to find an answer for those with chronic symptoms.

“I thought this is the opportunity to see what is going on in the brain of these patients with using X-ray techniques and radiological techniques which may give us some insight,” he said.

He said with cutting-edge neuroimaging studies researchers can look for evidence of inflammation in the brain which may be a reaction to the infection.

“That would be an important thing to do because it may give us another target for therapy,” Luft said. “A lot of the therapy that we now use is really just geared toward the organism itself, but it’s not really geared toward the body’s reaction to the organism which may also have to be treated in order to alleviate some of these symptoms.”

The doctor has studied Lyme disease for more than 30 years. When he arrived at SBU from Stanford University Hospital, he was involved in work with AIDs and age-related diseases, but he said at the university’s clinic in the 1980s many people complained of Lyme disease problems and there were no effective therapies at the time. Many of the first therapies and treatments used today were developed at SBU, he said, but there have always been people who haven’t responded well to those treatments.

“So that’s been something that’s been bothering me for many years as to why that is,” Luft said.

He said he will present initial data, which is promising, from the clinical imagining study at a conference in Barcelona, Spain, later this month and hopes to get more patients for the clinical study. Those who are interested can call 631-601-5615. Subjects must meet stringent criteria including not having any other disease, having serological evidence of Lyme disease and a clear history that they had the rash.

In addition to Luft’s studies, Dr. Christy Beneri, assistant professor of pediatrics at SBU, and her team are working on a pilot study to look at newer diagnostic tools to establish a better way to diagnose early Lyme disease.

“We also will be doing work on understanding tick epidemiology in our area and working with the local health department to understand potential new tick-borne pathogens,” Beneri said.

Stony Brook Lyme Disease Laboratory has been performing Lyme disease testing on clinical specimens since 1984. Both inpatients and outpatients can have a Lyme ELISA screening test and Western blots confirmatory test at Stony Brook Medicine. Almost 10,000 screenings were done in 2017 at the hospital, which has been actively working with state senators for funding for Lyme disease outreach and research, according to Beneri.

New one-stop clinic opens in Commack to provide care for 9/11 first responders

First responder John Feal gets a checkup at the Stony Brook WTC Wellness Program center, which opened a new facility in Commack, Nov. 28. Photo from Stony Brook WTC Wellness Program website

Accessing medical treatment on Long Island has become easier for 9/11 first responders.

Stony Brook WTC Wellness Program celebrated the official opening of its new one-stop health clinic in Commack Nov. 28. The program relocated from Islandia to the Stony Brook Medicine Advanced Specialty Care building, located at 500 Commack Road. The move allowed the program to expand from a monitoring facility into a 20,000-square-foot, integrative clinic where World Trade Center responders can receive more comprehensive medical treatment under one roof.

Dr. Benjamin Luft, program director and principal investigator, said the clinic is dedicated to caring for approximately 10,000 patients suffering from illnesses after volunteering at Ground Zero after 9/11. He said the responders suffer from a wide variety of conditions and the new location will provide the medical staff more resources. Among the new services available will be blood testing and imaging, which weren’t available in Islandia and caused patients to have to go elsewhere.

“This is ideal for the World Trade responder patient population, and the reason why is these patients who have been so severely affected by the World Trade Center disaster have a compendium of various abnormalities and disorders which are directly related to 9/11,” Luft said. “These included diseases ranging from psychiatry diseases to respiratory and gastrointestinal problems, to cancer.”

“The program is now a state-of-the-art facility that not only monitors you, but treats you and gives you top-notch medical care all in one facility.”

— John Feal

The doctor said the program has a research team dedicated to studying neurocognitive problems, autoimmune issues and cancer-related illness. The new Commack location has an in-house laboratory that will make accessing patients’ samples and processing them easier. He said many of the illnesses related to the disaster were not initially recognized, and the number of patients has grown approximately 8 to 10 percent each year since the monitoring clinic first opened on the Stony Brook University campus shortly after 9/11.

The day of the Commack grand opening, the Stony Brook WTC Wellness Program honored John Feal, a first responder and founder of the Fealgood Foundation. A Nesconset resident and Commack native, he said having the clinic where he grew up is special to him. Feal and members of his organization worked tirelessly to get the James Zadroga 9/11 Health and Compensation Act passed in Dec. 2010 and again in 2015. The act enables first responders, volunteers and survivors of the Sept. 11 attacks to receive health monitoring and financial aid.

Luft said at first the program treated many patients who lacked medical insurance coverage. “So when they got sick, they didn’t have health insurance or have someone to take care of their acute problems,” he said. “We established our clinic to do that at no additional costs to the patients.”

Feal, who was a patient at the Islandia clinic and recently had his physical in Commack, said he was impressed with the new location.

“The program is now a state-of-the-art facility that not only monitors you, but treats you and gives you top-notch medical care all in one facility,” Feal said.

He said having a one-stop clinic is important to many, especially for those who have become too frail to travel. Aging is an issue as many are now in their mid-50s or older.

“As we get further away from 9/11, the illnesses are getting worse,” Feal said. “One, because of age and, two, because with these illnesses, some latency periods and manifestations in the body take this long.”

The first responder said it was humbling to be honored for his work Nov. 28.

“We’re talking about human life, and I’m never going to apologize for anything I ever said or did, because at the end of the day I only care about helping those who are sick from 9/11,” Feal said. “And so many people are getting sick. It’s not ending anytime soon.”

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