Suffolk leads nation in tick-caused meat allergy alpha-gal syndrome

The morning after a barbecue in July 2021, Lisa Laskowitz woke up with “insane hives” over her chest and arms.

“My stomach was a mess,” Laskowitz, a real estate broker from Sag Harbor, recalled. “I was like, ‘What is going on?’ "

A blood test confirmed Lakowitz, 56, had alpha-gal syndrome, an allergy to many types of mammal meat — triggered by a tick bite. Two years later, she still must avoid red meat and has her blood tested periodically.

New data released by the Centers for Disease Control and Prevention shows that Suffolk County led the nation in suspected cases of alpha-gal syndrome between 2017 and 2022. And the agency said suspected cases of the syndrome are growing around the country. At the same time, a new CDC survey of clinicians found almost half had never heard of the syndrome.

On Long Island's East End, which has a large tick population, doctors have seen cases of alpha-gal for more than a decade.

"I've definitely seen an increase in the number of patients that I diagnose each year," said Dr. Erin McGintee, an allergist with ENT and Allergy Associates in Southampton who estimates she has treated close to 900 cases of alpha-gal over the last 12 years.

The CDC data showed that between 2017 and 2022, 90,018 people across the U.S. received a positive test result and were classified as having suspected alpha-gal syndrome. The highest number of suspected alpha-gal syndrome cases were identified in Suffolk, with 3,746, and Bedford, Virginia, with 1,511.

McGintee, an adviser on the Stony Brook Southampton Tick Borne Disease Resource Center, said she sees new cases every day. "I think people are quicker to recognize that when they're having an unusual allergic reaction," she said.

Symptoms of alpha-gal syndrome vary but can include hives or an itchy rash, nausea or vomiting, heartburn or indigestion, drop in blood pressure and dizziness or faintness. They may be mild, but in some cases could trigger anaphylaxis, a severe, life-threatening allergic reaction that requires immediate medical attention.

Alpha-gal syndrome is not a disease but an allergic reaction some people experience when they consume red meat or dairy products after being bitten by a tick. The syndrome is named for a sugar molecule found in most mammals. Ticks can transfer this molecule, which they likely have picked up from an animal they fed on, to humans. Scientists are still trying to determine why this triggers the allergic reaction in some people and not others.

Alpha-gal is not in fish, reptiles, birds or people, according to the CDC.

Deer, lone star ticks moving west

Virtually all of the known cases in the U.S. have been linked to the lone star ticks, which are plentiful on Long Island, according to experts, though they believe the syndrome can be caused by other tick species. As the deer population grows and moves west, so have the ticks.

"What we’re seeing in Suffolk County is that the lone star tick has been moving westward because they're very dependent on deer,” said entomologist Scott Campbell, chief of the Arthropod-Borne Disease Laboratory at the Suffolk County Department of Health Services. “The deer population increased first on the East End, and now they are becoming more prevalent, and that population is moving westward … and you’re seeing the trailing movement of the lone star ticks. The more hosts that the lone star ticks have to feed on, the more you will see them.”

Alpha-gal syndrome is diagnosed by evaluating symptoms and testing for antibodies. The number of people with positive test results in the U.S. grew from 13,371 in 2017 to 18,885 in 2021, according to the CDC. 

The CDC said 4% of all suspected cases reside within Suffolk County. The report did not include the number of suspected cases of alpha-gal syndrome in Nassau County.

McGintee said she thinks Suffolk's high numbers are due to a growing number of cases, awareness and over-testing. Not everyone who tests positive for antibodies will develop the allergy, she said.

In some cases, doctors may be ordering tests for clients who were bitten by ticks but had no symptoms of the allergy.

"We know that sometimes people will have a low positive alpha-gal test and they have never had an allergic reaction to meat,” she said. “I think we're seeing more positive tests, [and] not all of which are necessarily clinically relevant.”

Allergy can wane with time

Making sure you are not bitten again by a tick could be key to recovery from alpha-gal syndrome, experts said.

“If you can avoid repeat tick bites, often the allergy will wane with time,” said Dr. Erin Banta, an allergist and immunologist and clinical assistant professor at NYU Langone Hospital Long Island. “Unfortunately, if you do have subsequent repeat tick bites, that does seem to perpetuate the allergy in some cases.” 

Lone star ticks, known as aggressive hunters and biters, are believed to be the cause of most of the alpha-gal syndrome cases. But don’t discount the impact of black-legged ticks, said Campbell, pointing to some research that shows a possible link to alpha-gal.

Campbell said female lone star ticks lay 6,000 eggs, while female black-legged ticks lay 2,000 to 3,000 eggs. But while surveillance may show more lone star ticks in an area, they are not going to displace the black-legged ticks, he said.

Lone star and black-legged ticks behave differently when seeking a host, he said. 

If lone star ticks "can sense a carbon dioxide plume, a breath, they will actually move toward individuals, unlike black-legged ticks, which are basically an ambush hunter. They'll wait … for something to come by," he said. "Lone star ticks will actually move toward a potential host."

More tick awareness needed

Laskowitz, who sees McGintee for her alpha-gal allergy, said she is careful to avoid ticks and doesn't eat foods that might have meat byproducts hidden in them. But there have been some setbacks.

"If you go to a restaurant, you have to ask if the black beans are cooked in lard. Are you flavoring things with a pancetta?" she said. "I had to change all of my vitamins because many vitamins have gelatin, and gelatin is made from cows. So I have vegan vitamins."

The CDC said that between 2010 and 2022, more than 110,000 suspected cases of alpha-gal syndrome were identified across the U.S. Because so many cases are not diagnosed, the agency estimated that as many as 450,000 people might have been affected by the allergy.

A study released by the agency last week, which included a survey of 1,500 primary care physicians, pediatricians, nurse practitioners and physician assistants, showed 35% of respondents were "not too confident" about their ability to diagnose or manage patients with alpha-gal syndrome.

“I think it’s very important that the CDC has brought increased awareness of alpha-gal,” said Banta, who urged people to avoid tick bites, monitor for them and remove them as soon as possible. “We know all of those things help.”

And McGintee urged people who think they may have alpha-gal to be evaluated by an allergist and be wary of misinformation on the internet.

People are "avoiding foods that they don't need to avoid because they're reading incorrect information," she said. "They need to be properly evaluated and counseled on this allergy.”

By Lisa L. Colangelo

lisa.colangelo@newsday.com@lisalcolangelo

Lisa joined Newsday as a staff writer in 2019. She previously worked at amNewYork, the New York Daily News and the Asbury Park Press covering politics, government and general assignment.