Carla Cooper still remembers the day her life changed. It was in July of 2023, and Cooper, an Island ecologist, was in Menemsha when she ordered a hamburger and soft-serve ice cream. About two hours later, she was in agony, thinking she was going to die. “I was doubled over in pain. I had hives. I couldn’t breathe,” she said.   

After weeks of digestive issues and a battery of tests, she was finally told by a doctor what the issue was: alpha-gal syndrome. 

 Cooper is one of the hundreds of Islanders who have been diagnosed with alpha-gal syndrome, which more often than not leads to an allergic reaction to red meat and other mammalian products, such as dairy and gelatin. The syndrome, caused by a tick bite, is most closely associated with the lone star tick – a species that was first found on the Island in 1985 and gained a solid foothold in the last decade.  

 In just the past five years, the allergy has undergone a rapid rise on Martha’s Vineyard, causing concern among medical experts and potentially reshaping people’s relationship with the outdoors and food. The Vineyard is also on the leading edge in the number of cases of the syndrome along the East Coast, following in the footsteps of New York’s Long Island and outstripping neighboring Nantucket. 

 “It can be a huge, life-changing ordeal,” said Patrick Roden-Reynolds, the Island’s tick biologist and head of the Martha’s Vineyard Tick-Borne Illness Reduction Initiative (a.k.a. the MV Tick Program), which started in 2010 to develop educational outreach and fight back against tick-borne illnesses. “People can have serious reactions to it. You can lose your ability to breathe and lose life to this allergy,” he said.   

The Vineyard is no stranger to ailments from ticks – it has one of the highest rates of Lyme disease in the country and is the highest in the state. It is also on high alert for babesiosis, a disease that infects red blood cells and spreads by tick bites, and tularemia, a life-threatening disease that can infect humans through tick bites and contact with infected dead animals. But alpha-gal syndrome, in just a matter of years, has gone from relative obscurity to household malady.  

 In 2020, from the nine tests given that year at Martha’s Vineyard Hospital, there were just two positives – the first recorded on the Island. By 2022, the number of positive tests had risen to seventy-seven. The next year, that number doubled to 140. Last year, 523 came back positive from 1,254 tests.  

 “I don’t think a day goes by on one of my shifts where I don’t order a tick panel,” Aubrey Stimola Ryan, a physician’s assistant at the hospital, told the Vineyard Gazette last year. 

While the test results don’t represent the exact number of cases on the Island – some people may get tested multiple times – they show that alpha-gal now stands beside Lyme disease as one of the Island’s major health concerns.  

“It’s a very clear exponential trend,” said Lea Hamner, an epidemiologist
with the Inter-Island Public Health Excellence Collaborative, which formed in 2021 to tackle tick-borne illnesses and other public-health issues on the Vineyard and Nantucket. “It also indicates that our awareness of alpha-gal syndrome is going up.”   

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Alpha-gal syndrome is most commonly connected to the lone star tick, so named for the white spot on the back of adult females. It’s a species that has a long history in the United States. The first lone star tick was documented in the mid-1700s, but populations dipped and were largely kept to the southeast, south-central, and mid-Atlantic states. In recent decades, though, the tick has migrated as far north as Maine and as far west as Colorado and Wyoming.   

Lone star ticks were first found on the Vineyard at Long Point in West Tisbury in 1985. But it wasn’t until the 2010s when researchers realized just how common the species had become. At the time, they were contained to Aquinnah, Chilmark, and Chappaquiddick. From 2011 to 2017, the MV Tick Program completed 570 surveys, largely in yards, sampling for different ticks. By the end of that time frame, only two lone stars had been found outside that area: one in Edgartown and one along Lambert’s Cove Road in West Tisbury. In 2018, they began to creep in from the edges, but still hadn’t made much of a mark in Tisbury and Oak Bluffs. By 2022, lone stars turned up in five of the fourteen surveys in Tisbury, and one of the two in Oak Bluffs.  

“They are in all six Island towns and they’re only going to increase,” Dick Johnson, the former head of the MV Tick Program, said at the time. “It’s going to be a real shock to people in the next five years or so.”  

The lone star is particularly aggressive when compared to dog and deer ticks that Vineyarders are more familiar with. While other species of ticks usually lie in wait, hoping to attach themselves to a passerby, lone stars can actively seek out their prey. This is because the ticks can detect carbon dioxide emitted by humans and animals and will crawl toward the source. Roden-Reynolds said that the ticks aren’t running people down like a predator, but if you lie down on a beach towel or set up a picnic, it can give them enough time to wander over.  

Lone stars are also habitat generalists, meaning they are able to thrive in the woods just as well as lawns. They are active from March through October – coincidentally the Island’s busiest time of the year. And they have settled in seemingly with no problems due to the Vineyard’s ample habitat for the lone star’s favorite hosts: turkeys, deer, dogs, and, of course, people.  

Alpha-gal is spread differently than most tick-borne illnesses. Scott Commins, a doctor at the University of North Carolina School of Medicine and one of the foremost experts on the syndrome in the country, gave a presentation to nearly one hundred Islanders last fall on the subject. He said that researchers believe that lone star ticks carry what’s known as the alpha-gal carbohydrate.  

The carbohydrate is also found in all mammalian meat, with the exception of primates. When a lone star bites a human, the carbohydrate can be transferred into the person’s body via the tick’s saliva, Commins said. The human immune system will then make antibodies against alpha-gal, resulting in an allergic reaction the next time a person comes into contact with the carbohydrate.   

“The estimate is probably that there’s 450,000 cases [of alpha-gal syndrome] in the U.S. alone, and that is what begins to push [the allergen] to likely be the tenth most common food allergen,” Commins said.   

Because alpha-gal seems to be naturally found in lone star ticks, that means all stages of the tick life cycle can spread the syndrome. That is a major difference from Lyme disease, which is a bacterial infection that is spread to humans only after a tick has had its first blood meal from an infected host.   

The realization was startling for Islanders because that means the larval lone stars, which can be about the size of a speck of dirt, can trigger alpha-gal syndrome just the same as the easier-to-spot adult ticks. The larval ticks also cluster together, meaning a human that comes across them can walk away with hundreds of miniscule ticks on them at once. Once the carbohydrate is in their system, people’s sensitivity and reactions to alpha-gal can run the gamut, anything from stomach pain, hives, and a lightheaded feeling, to even their throat closing. “One of the hallmark symptoms is it is consistently inconsistent,” said Hamner.    

And there is a reason alpha-gal syndrome has earned the nickname “the midnight allergy.”

“You can literally have a hamburger for dinner at 7 p.m. and nothing may happen until midnight or 1 a.m.,” said Commins at his talk last year.    

For weeks after Cooper ate the hamburger in Menemsha, she was sick and short of breath. “I couldn’t walk to the end of my driveway,” she said.  

Eating a hamburger was the inciting incident for Jannette Vanderhoop too. A gardener living in Aquinnah, Vanderhoop is regularly exposed to ticks and suspected she had alpha-gal a little over a year ago before eventually being diagnosed. “I feel like it’s an occupational hazard for me,” she said.   

While Cooper has sworn off all products that contain the alpha-gal carbohydrate, Vanderhoop has been able to continue to eat dairy. But it has caused a shift in her eating habits. She has cut out red meat and pork and, after months of leaning on poultry as her main source of protein, she has ventured into more vegetarian cuisine. “My diet is definitely different,” Vanderhoop said. “I’m sick of chicken and turkey.”   

The thing people with alpha-gal learn quickly is just how widespread mammalian products are and how it can be difficult to avoid them. Vanderhoop finds herself checking the ingredients on Mike and Ike candies to make sure there is no gelatin in them, and Cooper has an entire folder of emails from different food companies responding to her queries about what’s in their products.  

Rebecca Miller, who owns and operates North Tabor Farm in Chilmark with her husband, got alpha-gal syndrome four years ago and had to stop taking her normal hormone supplement because it had a pork product in it. “It is a challenge, and it is a pain, but it’s waking us up to food and our relationship with food,” Miller said.   

The syndrome is particularly hard to navigate when going out to eat. Vanderhoop has had issues with the cross contamination of mammalian products. And Cooper has had a similar experience. While dining at a restaurant, she ordered a plain salad with oil and vinegar and it came back with bacon on it. “You don’t get too adventurous when you go to a restaurant,” she said.   

Even the fumes from cooking can trigger an allergic reaction for Vanderhoop, who can have trouble breathing and now regularly carries Benadryl. She’s not alone. In a 2020 study, Commins found that other patients have reported symptoms after being exposed to cooking fumes, though no blinded challenges have been published definitively linking airborne exposure to a reaction. Still, his paper advised patients to avoid places where meats are being cooked if it did seem to trigger a reaction.   

In response to the syndrome’s rapid spread, some Island chefs and restaurants are making an effort to cook more alpha-gal-friendly dishes. Catboat Coffee Co. and S&S Kitchenette in Vineyard Haven and the Pawnee House in Oak Bluffs have all advertised alpha-gal-friendly options for diners.  

Chrissy Kinsman, the owner of Pie Chicks Bakery in Vineyard Haven, offers an alpha-gal-friendly option for her weekly supper club, and she is considering making a vegan pie crust this summer. As the syndrome spreads, Kinsman feels that Island chefs have a duty to help people who are struggling. “You have to be responsible and deal with it,” she said. “We want to answer [the need].”  

The growing number of people with a meat allergy can also be hard for some Island farmers who make at least part of their income from meat and dairy.   

Miller estimated about one-third of her farm stand customers have alpha-gal, so she started making alpha-gal-friendly soup options. She also increased the number of chickens, and in the fall will have more turkeys.   

While there is no treatment for alpha-gal, people’s allergic reaction can wane over time, and some are able to successfully reintroduce dairy, red meat, and other mammalian products into their diets. The syndrome can wax too, though, and allergies can return or get worse over time if people are bitten by more ticks. 

Another bit of uncertainty: while many Islanders have relied on tick checks to prevent them from getting tick-borne illnesses in the past, that may not be enough with alpha-gal because it’s unclear how long a lone star tick needs to be attached to a person to transmit the carbohydrate.    

Roden-Reynolds and Hamner agree that the best course of action is to prevent bites from happening in the first place. “So many people have lived their lives here getting tick bites, and some of them accept that as reality,” said Hamner. “We need to convince people that it’s possible to not get tick bites.”   

Roden-Reynolds urges people to use permethrin – a synthetic insecticide similar to a natural insecticide found in chrysanthemums. He uses permethrin on his clothes and hasn’t had a tick bite in years. Insect Shield, a company that sells permethrin-treated clothes and will apply the repellent to people’s wardrobes, has such a close relationship with the Island that it offers a special discount to Vineyarders.  

Companies that spray yards for ticks have also started to pop up on the Island, and Roden-Reynolds has talked with plenty of people who want to see the species eradicated any way possible. While that’s an almost impossible task, the Island’s tick czar had a more straightforward proposition: cutting down the arachnid’s food supply. 

Martha’s Vineyard has one of the highest deer densities in the state with more than fifty-five deer per square mile. He urged more hunting of deer, turkey, and other game that were once staples of the American diet, depriving ticks of their favorite meals. 

“You want my bold opinion?” he said. “I feel like we are going to have to eat our way out of the tick problem.”