‘We can no longer eat burgers or ice cream, all because of a tick bite’
An insect-borne disease has taken over the famed Martha’s Vineyard and is forcing people to give up meat, dairy and even sugar.
In September 2020, deep into the pandemic, supply-chain disruptions to Martha’s Vineyard meant Andrew Keenan, a former chef, had gone months without being able to eat a proper cut of beef.
So when his local grocery store finally started selling high-quality meat again, he bought a pack of skirt steak for his family and cooked a slap-up meal for which he, his wife and his daughter were all “very excited”. He marinated it in garlic vinegar and cooked it medium-rare.
To this day, he has not forgotten it.
“I woke up at 2am with major stomach cramps and thought I had food poisoning,” said Keenan, 58. “I managed to go back to sleep but woke up four hours later and was covered in hives. I sat up in bed and almost fainted just from sitting up, that’s how low my blood pressure was.”
Keenan had gone into anaphylactic shock. He quickly took an antihistamine, rushed to the local hospital and underwent a series of blood tests. Days later the cause of the mystery illness was confirmed: he had alpha-gal syndrome, a life-threatening allergy to red meats and most dairy products.
Hundreds of people in Martha’s Vineyard, a large island south of Cape Cod, Massachusetts, in the US are living with this rare condition, which can be caused by a single bite from the lone star tick. It has transformed this exclusive, carefree summer spot into a place where residents practise veganism – not because they want to, but because they have to.
Sufferers cannot eat any food products that contains alpha-gal, a sugar molecule carried by the lone star tick and which is present in all mammals – except humans and some monkeys. This means cheeses, milk and meats from beef to venison are all off the menu. For some, even white sugar cannot be tolerated because it is processed using animal-bone char.
Alpha-gal symptoms including hives, stomach cramps, vomiting and breathlessness often start to appear several hours after eating foods containing the molecule, giving the syndrome its nickname “the midnight allergy”.
Such is the prevalence of the syndrome in Martha’s Vineyard that local restaurants and bakeries have introduced “alpha-gal-friendly” menu options, while grocery stores are selling more plant-based ice creams, cheeses and meats than ever before. Sufferers have set up an alpha-gal support group and regularly share advice on social media on how to avoid being bitten. Others have started to shun dining out, fearing they might fall ill from a slab of butter or a stray piece of cheese.
“I’m on a Martha’s Vineyard Facebook group and it’s a constant conversation,” said Megan DeLisle, the general manager of the Black Dog restaurant in Edgartown. “People are talking about it all the time. They get a tick bite and they’re scared, asking for advice.”
Her restaurant, she said, now offers an “alpha-gal entree” to cope with the demand, adding: “We’ll have local people come in and they’ll absolutely ask for alpha-gal entrees. No dairy, nothing with mammals.”
The lone star tick, an eight-legged arachnid no bigger than a shirt button, was first found on Martha’s Vineyard in 1985 but has become more established in recent years, feeding and breeding on the thousands of deer that roam the island’s lush woods and beach grass.
This is reflected in the rising number of alpha-gal diagnoses. Some 523 new cases were reported on Martha’s Vineyard last year out of 1,254 tests for the allergy, according to data from the island’s main hospital. In 2020, just two out of nine samples tested positive.
Keenan, a telecoms repairman who thinks he first developed the syndrome after stepping in a cluster of ticks in 2019, was the second person on the island to be diagnosed with alpha-gal, he said. At that time, none of the local doctors knew what they were dealing with. He said: “They were taking pictures. I was a case study. But they’re pretty good now.”
But whenever he ventures off the island, nobody is aware of the condition. “I went to the mainland for some dental work and told the doctor what I had but he and no one in his office had ever heard of it. That’s seven miles away from where I’m sitting right now.”
Keenan said he used to feel faint from the fumes released by a BBQ. “I’m a little better now,” he adds. Even so, he said his symptoms – diarrhoea, cramps and itching – can last days at a time whenever he accidentally eats something he shouldn’t.
In the most severe cases, anaphylactic shock can develop.
“Alpha-gal can be life-threatening for some,” said Patrick Roden-Reynolds, a biologist who leads the island’s tick-safety program. “Others may only get mild symptoms like hives. Reactions can be very different for different people.”
Kate Sudarsky, a 26-year-old teacher on the island, is one of the luckier ones. She was diagnosed with alpha-gal in 2021 after Keenan, her godfather, encouraged her to get checked for a mystery rash that had been bothering her for nearly a year.
But since her diagnosis she has never had an anaphylactic reaction, nor does she suffer from breathlessness – although she still carries an EpiPen with her. She said hives and an upset stomach are the worst of her symptoms.
The worst thing about the condition, she said, is how it’s reshaped her social life. She largely avoids BBQs and going out to dinner with friends because she cannot be sure that butter or white sugar hasn’t been used in the food she eats.
“It has had a huge impact on me,” she said. “I just can’t trust that a lot of places are able to accommodate my allergies. Or going over to somebody’s house for a potluck or a BBQ, you don’t want to be the social pariah asking people, ‘Is this vegan? What about that?’”
Sudarsky said that she missed cheese the most, as well as being able to grab a slice of pizza with her friends. Vegan cheese, she added, “is not good in any regard”.
Although the prevalence of alpha-gal syndrome on Martha’s Vineyard has rocketed in recent years, the island is “definitely not the worst off”, said Roden-Reynolds. Data from the Centers for Disease Control and Prevention indicates that the Midwest has the highest rates per capita, and the agency estimates that about 450,000 people are living with the disease in the US.
Yet experts fear the situation on Martha’s Vineyard is only going to get worse due to the island’s growing deer population. Roden-Reynolds said there are anywhere from 55 to 75 deer per square mile – up from 40 to 60 in 2011.
This is up to ten times the amount of deer needed for a healthy forest ecosystem, he said, adding: “Each deer this time of year probably has a couple of hundred ticks on them that are attached and feeding and producing new ticks for the next year.”
Locals have called for an increase in deer hunting to manage the island’s population. “Even doing some sort of hunting tourism-promotion thing here would be helpful in a way,” said Sudarsky.
Others have said that more accurate labelling is needed for food and medicines to indicate whether it’s “alpha-gal friendly”. Keenan said he had been prescribed drugs in the past only to find out through the manufacturer’s website that it contained an inactive ingredient he could not consume. He said: “I’m not sure why the hospital’s pharmacist or the doctors can’t provide that information.”
While there is no treatment for alpha-gal, people’s allergic reactivity can wane over time, and some are able to successfully reintroduce dairy, red meat and other mammalian products into their diets.
That day has yet to come for Keenan. He lives off a diet heavy in tofu and fish, and “eats way more chicken than I would ever want to”. But five years on from that fateful September night, he is still thinking about the meal that changed his life.
“I can remember it like it was the last steak I ever had,” he said.
The Times
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