Updated Nov. 3.
For Vineyarders, going out to dinner or enjoying a large meal can serve as a celebratory part of the day. But for an increasing number of Islanders, like West Tisbury resident Mark Baumhofer, preparing or ordering food has also become an exercise in avoiding some of the most common available ingredients — mammalian meat, dairy, and other products.
For the most severe cases of the tick-borne illness alpha-gal syndrome (AGS) — in which carbohydrate alpha-galactose, present in products from four-legged mammals, causes an allergic reaction — those affected can experience a delayed anaphylactic episode.
In such extreme cases, someone affected could wake up at night struggling to breathe after eating beef or pork for dinner.
There is also no current cure for AGS, though it is often not permanent, lasting from a few months to several years.
Baumhofer, who was bitten last summer, now carries an epipen. After consuming triggering foods, Baumhofer has experienced vomiting, significant gastrointestinal distress and pain, and days of fatigue.
Recent data from Martha’s Vineyard Hospital finds that Baumhofer is hardly alone.
For the third consecutive year, the Vineyard has shown a dramatic increase in positive tests for immune sensitivity to mammalian products.
In 2020, Martha’s Vineyard Hospital conducted nine tests on individuals to determine whether their antibodies reacted to alpha-gal. Just two of these tests were positive. In 2021, 78 tests were conducted, and 32 were positive. Positive tests have roughly doubled each year since. Out of 164 tests last year, 77 were positive. Already this year, 382 tests have been taken, and 140 came back positive.
Not every individual who tests positive for an antibody reaction to alpha-gal will show high enough antibody levels to qualify for AGS. And many who test positive will not or will barely show symptoms after consuming triggering foods. Also, the same individual can contribute multiple tests toward these statistics.
But according to the hospital’s Dr. Ellen McMahon, results on the Vineyard reflect an increased concern over AGS. “I would say that we are testing more for this disease, and have a heightened awareness of the disease found in lone star ticks,” says McMahon.
And though there are efforts to address lone star ticks on the Vineyard, there is still a substantial need to study the Island’s tick population and improve accommodations for those allergic to mammalian products.
Dr. Gerry Yukevich of Vineyard Medical Care says that alpha-gal syndrome, first reported in 2002, is an ongoing focus of immunologists, and that “[Island doctors] are still kind of scrambling the jets on this.”
For many people with AGS, the significant dietary adjustments can be difficult. That is certainly evident for Baumhofer.
“[The hospital] tested me for alpha-gal [syndrome], and it turned out I had a very high rating on their scale,” says Baumhofer. “Nothing from mammals [was allowed]; it was no meat from a mammal — beef, pork, lamb.”
Avoiding dairy can be a major challenge, as such ingredients are so common.
“Occasionally, at a friend’s house for dinner, there may [have been] some butter … I’ve had a few cases where there might’ve been some milk in something that wasn’t on the menu at a restaurant,” says Baumhofer. “So I’ve gotten really sick from it, two or three days at a time.”
On top of the physical effects, the experience of forgoing mammalian products has been troubling: “It’s very annoying. For one thing, you have to give up on all of the foods you like. I like cheese, I like butter. There’s nothing wrong with a nice hamburger — [but I] can’t have any of that.”
But what Baumhofer dislikes most is the social situations AGS has put him in. “We get invited over to a friend’s house for dinner, and there’s, say, eight or 10 other people there, and they’ve created a meal for everyone, and there’s really nothing that I can eat. And I don’t really want to have hosts go and change what they do just for me, so sometimes … I bring a salmon patty to grill when everyone else is having steaks,” he said.
Dining out can be a challenge as well, even after Baumhofer explains his diet to staff. In some cases, he has gotten sick after going out, and attributes that to chefs failing to accommodate his request. He has also had to send food back after, for example, observing non-vegan cheese on his plate.
As Baumhofer has addressed his AGS, he has become aware of a key Island authority fighting lone star ticks: the Martha’s Vineyard Tick Program, led by public health biologist Patrick Roden-Reynolds. This program works to eliminate ticks and educate people about various tick-borne illnesses.
Roden-Reynolds, who has now experienced two busy tick seasons on the Vineyard, has surveyed properties for lone stars. Now he is noting increased attentiveness toward AGS from Island medical professionals, community leaders, and residents.
This, he says, is largely due to the rate at which alpha-gal syndrome is rising. “From my point of view, Lyme disease is still the most common and probably the most prevalent tick-borne disease on-Island. We have the most cases [of Lyme] each year. But I would almost want to call alpha-gal syndrome the fastest growing. And I feel like that’s really just closely tied with the increased spread of lone stars across the Island,” he said.
Last year, in tick program surveys of 97 residences, 53 of the surveys turned up lone star ticks. “It seems like the Vineyard has it pretty bad,” says Roden-Reynolds. “Martha’s Vineyard is probably a hot spot for lone star ticks [in the Northeast U.S.].”
Roden-Reynolds says that while the first lone star tick on-Island likely was found in 1985 on Chappaquiddick, established populations of the species on the Island were first identified around 2010. Though lone star ticks are much more common in Aquinnah and Chappaquiddick, they have been identified in every Island town.
For addressing the burden on Vineyarders with AGS, both Roden-Reynolds and Baumhofer have noted buzz for the idea of a support group. For Baumhofer, finding good vegan food has been helpful, and he has recommendations for those who need diet adjustments.
“I’ve found that vegan cheese is really a pretty good product,” he said. “Impossible Meat makes a great burger. There’s a food truck over by the ice arena that makes a great Impossible burger — delicious.”
Fish and chicken meat are also options for those affected, if prepared separately from mammalian products. Roden-Reynolds is also planning another alpha-gal cooking class, after hosting the first such event last year with the Agricultural Society and South Farm.
There are a couple of ways Roden-Reynolds thinks a support group could form. “[It] would either have to come from a grassroots organization, just from the community itself, or something … initially organized by the town and then taken over by the community,” he says. “There are [people] out there who want to be a part of it.”
Baumhofer has several other changes that he wants to see on the Island, including increasing surveys and notifications at tick-prone areas. Baumhofer used to hike often at Cedar Tree Neck, where he says he was bitten. He also mentioned Land Bank properties.
“I would like to see the Land Bank be a little more proactive in requesting people [who] find a lone star tick on them in [a] particular property, that they let them know, and to list it … I think there are things that could be done to alert the public about the presence of lone star ticks.”
Baumhofer, Yukevich, and Roden-Reynolds all agree that anyone who thinks they have sensitivity to alpha-gal should get tested at the hospital. They also all recommended treating clothes with permethrin, a tick-killing pesticide available in stores and online.
Roden-Reynolds, who will tell anyone to both use permethrin and conduct regular tick checks, says that he has yet to receive a single bite on the Vineyard.