The alpha-gal diaries

On the ever-growing list of frightening tick-borne illnesses, alpha-gal syndrome is the new bogeyman. The syndrome is imparted by the lone star stick – named for the white splotch on the adult female’s back – which has migrated up from the South and is now vying with the deer tick for species dominance in the Northeast. It is, in many ways, even scarier: the lone star lays about twice as many eggs as the deer ticks we’re used to, seeks its prey more aggressively, and has longer mouthparts that penetrate flesh more deeply. Unlike Lyme disease, which is usually treatable and takes about 24 hours for a tick to transmit to a host, the lone star delivers its alpha-gal molecules immediately, giving some victims an allergy to meat that can range from inconvenient to fatal. There is no known cure, though the allergy can fade over time.

Alpha-gal has been getting a lot of press this summer, but for those who contracted it as recently as a couple years ago, they had no idea why they were suddenly getting sick: diarrhea, full-body hives, shortness of breath, flu-like chills, vomiting. After all, they’d been eating meat all their lives. The allergy usually kicks in two to six hours after eating meat, making the connection particularly hard to pin down. For those who sought medical help, their doctors had no idea either, leading in one case to a half-dozen emergency room visits.

We spoke to four alpha-gal pioneers – a retiree, a carpenter, a nurse and a homesteader – about how their lives have changed since that fateful tick bite.

‘A life sentence’
No more Wendy’s Baconator, ice cream or her favorite wool blanket

Janet Minser, 68, a retiree who lives with her disabled brother in western Pennsylvania, had probably been having reactions for six or seven years before she figured it out in 2023. She’d just bought a quarter of beef – “organically raised, grassfed, wonderful meat.” She cooked and ate one pound of it, and two hours later, she “was covered in hives, head to toe, and my throat was closing up,” she said.

She went to the doctor the next day and had bloodwork done: she had alpha-gal syndrome.

Tick bites are a fact of life where Janet lives, and she’d been diagnosed with Lyme disease a decade earlier. But there was one particular bite that stood out in her memory – it had been in the middle of her back and she couldn’t get it out herself. Her mom, whom she was living with at the time, tried to remove it; her sister even came over to try. But Janet thinks the head was left in. She has a hunch that was the tick bite that changed her life.

In the intervening years, Janet would break out in hives, seemingly at random. She would have bouts of sudden, urgent diarrhea. She attributed her newfound shortness of breath to long Covid, but “I really don’t know.” In retrospect, it might have been the alpha-gal.

Once she had her diagnosis, it fell to Janet to do her research. She has had to avoid not only mammal meat, but also most dairy (sometimes found in potato chips); carrageenan (a seaweed extract used as a thickener, found in most ice cream, including non-dairy varieties); Jello; anything with marshmallows, including Rice Krispie treats; the collagen supplements she’d been taking to keep her hair from falling out, which she replaced with marine collagen; even a wool throw blanket she used while watching TV, which she ended up giving to her dog.

Even walking through three livestock barns at a county fair a couple years ago gave her brain fog, she believes, as a result of the fumes.

At church fellowship dinners, she has to bring her own food in a Tupperware. She has to check every restaurant she wants to eat at to see what oil they use (anything but beef tallow, like they use at Popeye’s, is okay). McDonald’s is out, and “I can no longer have the Baconator from Wendy’s.” She reads labels at the grocery store so carefully that she’s sure other shoppers are giving her curious looks. But who would imagine a bag of frozen fish sticks from Aldi contained beef?

“I don’t feel any different unless I expose myself to something. Basically it’s a life sentence. It’s not a death sentence, but it’s a very inconvenient lifestyle change,” she said.

It’s a lot, but it could be worse, she knows from her half-dozen internet support groups. She could be sensitive to her dog; to the glue that holds toilet paper together. She doesn’t wear makeup, but people report reacting to that, too.

There isn’t much help to be had from the medical establishment, many alpha-gal sufferers report. “The first so-called allergist I went to, even after I had the positive test result, he told me it was impossible for me to be allergic to meat because I’d been eating it all my life, and I must have been allergic to the salt and pepper that I used to season the meat,” said Janet. “Most of my information, unfortunately, has to come off the internet, because it’s like 90% of the doctors don’t have a clue.”

Alpha-gal can also complicate other health issues. When Janet told her cardiologist she had alpha-gal syndrome – and explained to him what it was – he responded that the condition could end up being life-threatening. If she needed a heart valve replacement in the future, she couldn’t get a pig or cow valve.

Through her network, Minser found a tincture called Alpha Knot made from Japanese knotweed by an herbalist in West Virginia, which she says has reduced her sensitivities. She took it twice daily for two weeks, and now only takes it if she’s concerned she’s been exposed to something. These days, if she eats something she shouldn’t, as opposed to spending hours in the bathroom, it’s “one and done.”

“I’m not as sensitive as I used to be. I can now eat a little bit of some of the harder cheeses,” she said. “I never was much of a milk drinker.”

‘I refuse to be chased indoors’
She spent months in and out of the ER thanks to a misdiagnosis, but she won’t let fear keep her from hiking

Lisa Kuprian, 56, a registered nurse and widow in Upstate New York, was in and out of the emergency room all summer in 2024.

“I kept having these crazy reactions where my face was swelling, my lips were swelling,” she said. Her doctors misdiagnosed her with angioedema – facial swelling that can be a side effect of blood pressure medications, which Lisa was on. “They just kept telling me like, ‘Oh, this could happen for months and months and months.’”

The diagnosis sounded plausible to Lisa at first. “But after a while, I think it was like my sixth visit to the emergency room and my third episode of anaphylaxis, I insisted on seeing an allergist.” No one thought of alpha-gal syndrome, including Lisa, whose background is in medical research. “If you look at the alpha-gal map, the maps that they had available, I live in Herkimer County; it wasn’t even on the map. Like, nobody here has alpha-gal syndrome. They do now.”

Five months and four doctors later, an allergist finally did a simple blood test, and she was diagnosed with alpha-gal syndrome in December 2024. “Even the allergist was like, ‘I don’t think you have this. We’re going to test you for lupus. We’re going to test you for mast cell activation syndrome, and something else.’ And she’s like, ‘And I’m going to throw in the alpha-gal test just in case.’ And it was alpha-gal the whole time.”

Kuprian remembers the tick bite. “The tick kind of like latched underneath my breast, and I didn’t notice it right away. And that tick bite was different than any tick bite I had ever had because it got very red, very itchy,” she said. “Actually it’s funny because that spot still sometimes bothers me if I’m having an allergic reaction.”

Now she carries EpiPens with her, which have to be kept at a certain temperature – not too hot and not too cold. She takes a Zyrtec every night before bed, because, as her allergist explained, “my histamine bucket is kind of full all the time.” When she tried to wean off the Zyrtec, she had an allergic reaction – to what, she has no idea. And she strictly avoids all mammal products, including wool, because she’s sensitive to lanolin. “An outdoor girl,” she had to get rid of all her wool socks and base layers, which were making her break out in hives.

A few months before she was diagnosed, Lisa had gone camping with her grandson’s Cub Scout troop. It was October and cold, so she wore wool base layers, including socks and hat. Her whole body swelled up and the itching was unbearable. They had to pack up and leave.

Now that she knows what’s going on and has it under control, said Lisa, “Actually, it’s not so much of a big deal.” She switched a lot of her personal care products and makeup, and changed how she ate. “But now I’m used to it. It’s like every day, it’s normal. You know, I don’t go to restaurants that often anymore.”

In fact, her new condition comes with a silver lining. “My cholesterol has gotten better, and you know, I’ve dropped a few pounds. I’m not eating hamburgers with bacon and cheese like I used to,” she said. “When my grandson comes here, he knows all about alpha-gal syndrome, and he hates having to eat clean food.”

Lisa keeps to a strict diet. “I don’t even dabble with trying to eat any mammal. It’s not worth it to me. I don’t have time to take an EpiPen and then go spend four hours in the emergency room. So I’m also dairy-free.”

Lisa joined some Facebook support groups at first, but eventually got turned off by posts about non-evidence based treatments. The most helpful information source she’s found is The Essential Guide to Alpha-Gal Syndrome by Lauren Iseley.

This summer, after months of having the condition well in hand, Lisa had a reaction after eating at a food truck, where she’d ordered shredded chicken and white rice. She chalks it up to a case of cross contamination; the truck also served shredded pork. Three hours later, her face swelled up.

Following her allergy protocol, she popped an extra Zyrtec and another antihistamine. If the swelling had progressed to her tongue or throat, she would have taken an EpiPen and gone to the emergency room, but it didn’t.

In the wake of her diagnosis, Lisa – “a big outdoor girl” who kayaks and hikes – found this spring that she was “a little bit afraid to go outside,” she said.

“But then I was like, ‘What the heck am I doing?’ Ticks are everywhere. I can’t avoid it.” So she wears permethrin treated clothing, and wears a lot more clothes outdoors than she used to. “I refuse to be chased indoors because of this.”

‘I can live with it’
Being pescetarian is no big deal – maybe even preferable

Seth Aylmer, 44, a carpenter and father of three, only started putting the pieces together a month or two after he started having weird symptoms: he’d get hives and sometimes vomit after eating meat. And whenever that happened, the spot where he’d gotten a particularly bad tick bite would swell up.

Seth works outside and estimates he’s gotten thousands of tick bites, but that one was the worst. He assumed it was because the tick had been under his toolbelt all day, pressing into him. (It could also be because the lone star tick has longer mouthparts than the deer tick. “Worst tick bite ever” is a common refrain among those who end up with alpha-gal.)

Finally, after a giant roast beef holiday dinner with his in-laws that left him vomiting and sick with flulike chills for an entire day afterwards, he made the connection. He was having a reaction to meat, and the tick bite had something to do with it.

This was 11 years ago, and alpha-gal syndrome was just beginning to attract attention in the Northeast. It wasn’t until six months later that Seth would hear about another guy in his area of Accord, NY, who also had the syndrome; he’d been hospitalized with anaphylaxis after eating meat.

Seth is pescetarian now. Though the allergy doesn’t prevent him from eating poultry, his past experience with vegetarianism taught him that when you’re not eating meat, “you develop a different system, and in my particular case, I just felt like I could digest things easier if I didn’t have chicken.”

He never got formally diagnosed. What was the point? “Having three kids and working, I just was sort of like, you know, I can’t even deal with this.”

He had dabbled with vegetarianism over the years, in high school, then traveling in France and during a year-long stay at an ashram, “and it’s actually kind of okay,” he said. “For me, it wasn’t so foreign, and there’s some aspects I prefer about it. The worst part about it for me is going to a social occasion and just being annoying and embarrassed that I can’t have X, Y and Z,” he said. “But personally, I’ve kind of just chosen to adapt to it rather than trying to figure out getting over it or fixing it, which I guess some people are doing now. It’s not a horrible end-of-the-world scenario for me. I can live with it, but it’s cool to hear people beating it. I find that encouraging.”

As the syndrome has exploded in the region, along with media coverage about the lone star tick’s northward expansion, people’s ears perk up when Seth mentions why he’s foregoing a burger at a barbecue.

“I’m sick of talking about it, but other people are interested,” he said. “I feel like people who love meat are absolutely horrified. Like, could this happen to me?”

He beat his meat allergy
‘Maybe micro-dosing worked, maybe I outgrew it’

Joe Gara, 50, of Matamoras, PA, knew he had some sort of meat allergy the second time it happened. (Joe is married to the writer.) Two consecutive Friday nights, he’d woken up covered in hives in the early hours of the morning. His neck, chest, armpits and whole upper body were all red and itchy.

This had never happened before. A Benadryl and shower calmed things down enough both nights to get back to sleep.

He’d had the same dinner both Fridays: pork. It had to be the pork.

Before that first episode, Joe hadn’t eaten red meat or pork for at least a decade. But this pork was special, because he’d raised the pigs on his homestead. Why, then, was his body rejecting it?

Initially, Joe was mystified. But when he came across a mention of the alpha-gal meat allergy in 2012, he knew that was what he had.

Joe, then 36 and expecting his first child, had suffered multiple bouts of Lyme disease. It made sense that, out and about on his homestead (he lived in Chester, NY at the time), he had also acquired another tick-borne illness.

That was fine, he rationalized. He’d just go back to being vegetarian. Perhaps this was karma’s way of telling him he had already had his share of meat. This was, after all, the guy whose dad used to call him “Bacon Man.”

“I decided that not eating mammals was not a big deal,” he said. “I could still eat poultry, eggs and fish, duck breast, seared tuna streak, yum!”

He still fed his family red meat, like the venison he took with his bow. “It seemed more right hunting for a deer that was not for me,” he reflected.

His new condition simplified the conversation around being vegetarian.

“At least now it was a medical condition. I wasn’t offending anyone any more by deciding to not eat meat – like my high school buddy’s mom who was horrified and felt she did something wrong when I wouldn’t eat her roast beef,” he said.

The decision to become vegetarian at age 20, after a three-week family trip to Greece, had marked a turning point for Joe. Joe’s grandfather, “Popou” – who had left home at 13 years old because of the Depression – was returning home some seven decades later with three generations to the tiny island of Kefalonia. The whole family stayed with Popou’s sister, Joe’s great-aunt.

The homecoming turned out to be eye-opening for Joe. “Popou tried to source a pig to have a meal with his family. He was unable to find a pig, so settled for a rabbit from the butcher shop,” recalled Joe. Meat was precious, Joe saw, and he felt that was as it should be.

After returning to New York and dropping his grandfather off, Joe saw fast food signs advertising 99-cent hamburgers with new eyes. “I couldn’t support this system,” he realized. “I would not eat meat.”

His new worldview set him apart from his family and most of his friends.

So this new meat allergy wasn’t all bad, he figured. “It would save me conversations that – however right – made me feel snooty.”

For about 14 years after contracting the allergy, Joe avoided meat and didn’t think much about it. In the early days, it seemed no one else had alpha-gal, or even knew what it was. There’d be the occasional headline about alpha-gal or the lone star tick, and “friends sent me links as if it was news to me.”

Then in September 2024, a 47-year-old New Jersey airline pilot died from the first-known fatal case of alpha-gal syndrome, going into anaphylactic shock hours after having a hamburger and a beer at a backyard barbecue. Suddenly, the tick-borne meat allergy had entered the general consiousness.

“Still, I only know two other humans who’ve ever had it,” said Joe. One of those, Jorge, a cooking instructor in his 60s whom Joe met at a wilderness survival class, had beaten it. “So maybe I could too,” he thought.

Jorge became a role model for Joe. “His Spanish accent and robust midsection gave him extra gravitas,” Joe said.

While teaching a backcountry cooking class, Jorge had mentioned that he’d overcome his meat allergy with two courses of acupuncture. After completing acupuncture, twice Jorge went to the grocery store, bought a bunch of meat, cooked and ate it. Then he got in his car and drove to the hospital, where he sat in his car and read the newspaper outside the emergency room, and waited. He was fine both nights, and fine since.

Jorge gave Joe the name of his acupuncturist in Virginia. Joe held onto it, but never seriously considered making the trip, “to get acupuncture to beat a meat allergy I wasn’t sure I really cared to cure,” as he put it.

But as Joe got more into wilderness survival, he began to realize that “if you really want to be able to survive in the woods, the effort it would take to sustain yourself would be incredibly difficult without eating red meat. So it was something to think about.”

In news stories coming out about alpha-gal, Joe had read about people beating the allergy by eating tiny portions of meat in the interest of developing a tolerance. It was worth a shot. Joe started occasionally taking one bite of venison at dinner, “chewing 30 times like the monks do before spitting it out.”

Then last November, “the universe gave us two does in five days during bow-hunting season. I made meatballs to celebrate the first one and ate one meatball during dinner.” He didn’t drink any alcohol; the “burger and a beer” warning echoing in his head. (The New Jersey pilot died after consuming that barbecue fare.) “I went to bed knowing there was Benadryl on-hand, a little terrified. I slept fine.”

A few days later, dinner was meatball subs. Joe had two meatballs, again no booze. He worked his way up to a burger, then a steak. “Then I was eating venison jerky throughout the day. Now I can eat and drink anything. Maybe micro-dosing worked; maybe I outgrew it.”

Or – almost anything. There was one episode after Joe was “cured.” He ate some storebought pork at a family lunch, “that I could clearly see was undercooked, and I had two to three drinks.” Around 8 p.m., his arms got itchy. He took a Benadryl and went to bed.

It was unsettling, but not a major setback. A few weeks later, at a reunion with his college buddies, Joe ate lots of meat and drank a few beers, with no reaction.

“I’ve thanked my friend who demonstrated it was possible,” said Joe. “I told my other friend how I beat it, or at least that it was beat, and he was like, ‘No way am I trying that.’”