Hives. Stomach pain. Anaphylaxis. There are just some of the symptoms that more and more Islanders are encountering after being bitten by a lone-star tick.
Vineyarder Adriana Stimola is one who has struggled with alpha-gal syndrome, the tick-borne allergy to mammalian food products. The condition has caused an especially difficult couple of weeks for her family. “Both my husband and I had anaphylactic reactions in the last two weeks,” she said. “We have two small children who we’re pulling lone star ticks off all the time.”
Amy Wood, who has had alpha-gal for over six years, has had her share of crises as well.
“I even ended up going to the ER in the Frankfurt Airport in Germany, because I hadn’t been able to breathe for like nine hours on the plane,” she told The Times. “And of course they had no idea what was going on.”
Stimola, Wood, and dozens of other Vineyarders came to the Agricultural Society last Wednesday, forming the first meeting of a new alpha-gal support group intended to occur monthly.
Attendees had questions for a panel of medical and public health professionals, wondering when to get tested, which foods to avoid, and how to repel ticks.
Amelia Habrecht, a public health nurse at Island Health Care and support group organizer, told The Times that the group offers a comforting and educational space for people with alpha-gal.
“Many are looking for a community to kind of talk to, and discuss how they have to deal with [the allergy],” she said.
“Alpha-gal,” as many call the condition, is named for the carbohydrate alpha-galactose. Anyone can acquire an allergy to alpha-gal after being bitten by a lone star tick.
Many people must avoid mammalian food products that include alpha-gal, and some have had to cut beef, pork, and venison out of their diet completely. Severe cases can also force people to swear off dairy and gelatin, and even avoid certain cooking fumes and even some medicines.
The size of Wednesday’s crowd was one indication that Islanders are worried about the lone star tick.
Statistics from the Martha’s Vineyard Hospital also show a rising problem in the last several years.
In 2020, the hospital provided 78 blood tests for immune sensitivity to alpha-gal, and 32 people tested positive. These numbers roughly doubled in each of the next three years, with 382 tests yielding 140 positives in the first 10 months of 2023. Numbers are still trending upward. Up until July 20 of this year, the hospital has tested 386 people, with 149 of those tests showing sensitivity. (Tests do not necessarily indicate how many people tested positive — some patients could have tested multiple times).
The first meeting’s panel was made of wildlife biologist Patrick Roden-Reynolds, head of the Martha’s Vineyard Tick Program and an organizer of the group; otolaryngologist Dr. Ed Caldwell; and Dr. Gerry Yukevich.
The three confidently fielded concerns from the 47 attendees, though they often noted that medical professionals themselves still have many questions.
Panelists also shared online resources. Roden-Reynolds recommended the Martha’s Vineyard Board of Health’s page, www.mvboh.com/alphagal, as well as alphagalinformation.org, a site created by people with the allergy.
Caldwell — whose Island practice has over 250 patients with alpha-gal — told the crowd that the Vineyard is a regional hotspot for the challenging condition. The allergy was first discovered relatively recently, in 2006.
“Tick-borne illnesses as a whole have been poorly understood by the medical community,” Caldwell told attendees. “The Vineyard is unique in that, unfortunately, we are a ground zero for the Northeast for tick-borne illnesses.”
When attendees asked what treatments are available for the allergy, Caldwell simply advised doing one’s best to not be bitten. “The only treatment that is really tried and true at this point is avoidance,” he said.
When an attendee asked how long sensitivity to alpha-gal lasts, Caldwell said that more research was needed. “A lot of people ask me ‘How long do I have to avoid meats?’” he responded. “Big question, good question — we don’t have the answer.”
When asked how to know whether to get tested, Caldwell said to get tested the next day if you have gastrointestinal distress and rashes after eating meat. An anaphylactic reaction is an even clearer signal to consult a medical professional and get a test.
Alpha-gal can be frustrating to explain, said the panelists, because one person’s symptoms can differ greatly from another’s. Some people are vulnerable to anaphylaxis following one bite, while some people have no sensitivity whatsoever after multiple bites.
“Being an allergist, I feel strongly — like with all allergies — that you are genetically predisposed to allergy,” explained Caldwell.
Stimola told the group that on the blood test, which operates on a zero-to-six scale, she scored a three. However, she has experienced some of the most severe symptoms associated with the allergy, having a life-threatening reaction after inhaling cooking fumes at a burger night.
Many attendees asked whether they should carry an epipen.
Doctor Caldwell generally advised a better-safe-than-sorry approach, especially for those with respiratory symptoms. “If you think you need epinephrine, use epinephrine,” he said. “If you have any sense of airway tightening, or swelling on your lips or tongue, use epinephrine.”
“If you have a rash, I don’t think I’d use epinephrine,” he stated.
After using an epipen, Caldwell added, one should immediately take an ambulance to the hospital. “If you ever use epinephrine, the second thing you do is you dial 9-1-1 and you go by ambulance to the emergency room,” he said. “You do not have a friend drive you, you don’t have your mother drive you … and 99 percent of the time you get to the emergency room and they’ll look at you and go, ‘Why are you here?’ And then you can say ‘I injected myself with epinephrine,” and that should be the end of the conversation.”
Many at the meeting shared frustrating experiences with medical professionals, especially off-Island where doctors may have less experience with the allergy.
One support group attendee who spends lots of time in urban centers, said it took her five and a half years and seven emergency room visits before being diagnosed with alpha-gal syndrome.
Wood also recalled disappointing experiences off-Island. “My other primary care doctor [in Boston] had never even heard of [alpha-gal syndrome],” she told The Times.
After sharing her symptoms with doctors off-Island, Wood has in the past been prescribed anti-anxiety medication, as well as incorrectly diagnosed with irritable bowel syndrome.
She added that she has gotten proper help at the Martha’s Vineyard Hospital. “I have to be very grateful for a Dr. [Harvey Lederman] at the MV Hospital ER,” she said. “He was amazing. I asked for a test, and he gave it to me without any questions.”
Many in the group also asked how to keep lone star ticks away off of clothes and away from homes, a question in Mr. Roden-Reynolds’ wheelhouse. He recommended the insecticide permethrin, with some caveats.
“Permethrin’s the most effective one,” he said. “It definitely [comes with] some health consequences or considerations to make — aside from being toxic to pollinators and other insects, permethrin is toxic to aquatic life.”
“[But] that’s only an issue if your property is near surface water,” he continued, stating that the insecticide is stable once dried and treated, and stable in soil and vegetation. “So there’s no concern about it leaching into the groundwater,” he said.
Hambrecht told the Times that she reached out afterwards to attendees who signed up for a mailing list, and received overwhelmingly positive feedback.
“I got close to 30 emails,” she said, “and almost everybody responded saying ‘Thank you, I can’t wait for next time.’”
Attendee feedback has also informed Hambrecht’s plans going forward. “All of them want expertise, and speakers … like every [condition] that is new, there is a lot of info out there. But how do you know if it’s right or not?”
Hosting pharmacists is one idea, as gelatin or albumen found in medicines can trigger reactions in some patients.
Hambrecht would also like to organize a potluck where Vineyarders can share dietary tips.
She added that, if attendees permit, future events could be recorded for Martha’s Vineyard Television to be seen by a wider audience. “Many people are summer residents, or were here for two weeks, and are going to go home with a gift from the Vineyard,” she said of lone star bites.
The Vineyard is not alone when it comes to alpha-gal — Hambrecht shared on Wednesday that it is the county’s 10th most common allergy after sesame, affecting over 450,000 people in the US.
Those interested in joining or learning about the support group can email Hambrecht at ahambrecht@ihimv.org.
