Massachusetts more than a dozen other states in mandating doctors and blood labs to report cases of an unusual tick-borne syndrome known as .
The very dangerous and sometimes fatal condition makes those who contract it allergic to red meat and occasionally to mammal products like dairy. Reactions can be mild, but in many cases, they send patients into anaphylactic shock. In 2024, a pilot became the to die from alpha-gal after eating a hamburger at a barbecue.
The illness is caused primarily by the , and for more than a decade was most common in Arkansas, Kentucky, and Virginia, where doctors have long been reporting cases.
But now, as the disease spreads, up to may be living with the syndrome, according to a Stony Brook University report. Many are unaware they have it until that first allergic reaction.
Tony Haigh of Bella Vista, Ark., is living with alpha-gal. He considers himself lucky because he reacts to mammal products only by breaking out in hives.
鈥淚 had hives just covering my body for about three weeks, and it led me to, you know, try to get some testing done and figure this out,鈥� Haigh said, 鈥渁nd luckily was identified rather quickly in my case.鈥�
Allergist and immunologist diagnosed Haigh at the Allergy and Asthma Clinic of Northwest Arkansas in Bentonville. Merritt is known for her research on alpha-gal and helped develop the test to detect it.
Reactions range from hives to nausea and vomiting to anaphylaxis at worst, Merritt said.
鈥淭he hard part with alpha-gal is it鈥檚 usually delayed. And so, some people may not associate their reaction with the hamburger they had at dinner,鈥� Merritt said. 鈥淎nd it鈥檚 usually at 2 in the morning; they鈥檒l wake up with dizziness. That means their blood pressure is low 鈥� And when the blood pressure drops, they usually describe dizziness, but it happens very quickly, and so they may not have much time to get attention.鈥�
9 questions with Tony Haigh and Tina Merritt
Was your diagnosis scary? How did you clear up the hives?
Tony Haigh: 鈥淐ertainly scary. I carry an EpiPen now. I鈥檝e luckily never needed it, but I make sure I never travel without one and always have one in my truck if needed.
鈥淪topping red meat and all mammal products is, of course, the first thing that you do. But the first year that I had it was actually quite tough on me. And so, the remedy is just a lot of antihistamines. And now I eat a lot of chicken and eggs and vegetables.鈥�
How conscious are you of avoiding meat?
Haigh: 鈥淚t is very real. If I go to a restaurant, it鈥檚 absolutely a concern that there may be cross-contamination. If I have family or friends who are cooking a meal for me, they may think that, you know, they鈥檝e modified to help me, which I鈥檓 very grateful for. But oftentimes that turkey or chicken sausage that they鈥檙e substituting has a pork or beef casing.鈥�
Dr. Merritt, 鈥奱t the University of Virginia, you knew Dr. Thomas Platts-Mills. He was also studying allergies. He鈥檇 been contacted by somebody who had a cancer drug, and people were having adverse reactions. They couldn鈥檛 figure it out. He tested and found that some of the alpha-gal antibodies were in that cancer drug.
Tina Merritt: 鈥淚t was made in an animal cell line, and they had attached a carbohydrate that we found out later was alpha-gal. Then Dr. Platts-Mills figured out it was in the distribution of the ticks. So, the lone star tick distribution, so it was mainly in the Mid-South at the time. And so that was my area because I moved to Arkansas, and then a patient passed away from that cancer drug from their first infusion. And so, I called them, and I said, 鈥楬ey, we got to get this test going again.鈥� And so that鈥檚 how the test got developed. But he figured out it was tick bites. He figured out it was beef and pork-related. And it鈥檚 just kind of grown in information from there. But it was also described in Australia about 30 years before we did.鈥�
鈥奌ow does the tick get that molecule and then bite a human and deposit it? Does it ever go away?
Merritt:鈥娾�淭here鈥檚 a group in Mississippi that measured tick saliva, and they found the lone star tick and the blacklegged tick, which is more common on the eastern coast, they both contain alpha-gal in their saliva.
鈥淲e think it might go into remission if you don鈥檛 get bitten again. The hard part is if you get bitten again, your immune system develops a good memory, and you may not be able to go into remission.鈥�
Haigh: 鈥淎 fear of mine is getting bit by another tick that鈥檚 infected and having my symptoms get worse.鈥�
Cases on Martha鈥檚 Vineyard grew from two in 2020 to more than 500 in 2024, according to the Martha Vineyard Hospital. Some people there, even tourists, are taking up strict and sometimes permanent vegan diets so they won鈥檛 get the symptoms.
Merritt: 鈥淭he hard part is there鈥檚 a lot of mammal ingredients and several things that we use just in daily use. So, it could be problems with products. So, if your skin breaks out from your shampoo, is it the mammal ingredients? It could be. If you鈥檙e taking a medication, if it has a gelatin capsule, or even sometimes pills can have a binder. There鈥檚 one called magnesium stearate. There鈥檚 pre-gelatinized starch. So, I myself have alpha-gal. I was dizzy for six months before I realized the pill I was taking had magnesium stearate and pre-gelatinized starch.
鈥淚鈥檝e had it probably since third grade, but we didn鈥檛 know what it was back then. Stomach aches was my main symptom back then.
鈥淚n third grade, I was bitten by seed ticks at Girl Scout camp in Louisiana. And then I was calling my parents on hamburger day with stomach aches. I thought I was being punished on Good Friday for eating a hot dog.鈥�
What鈥檚 your advice to people scared of contracting alpha-gal?
Merritt: 鈥淭here are some plant-based insect repellents. There鈥檚 also DEET and permethrin. There鈥檚 even different clothing lines that have tick repellent in the clothes. Also, you can treat your own property if you feel like there鈥檚 a tick potential in your property. If you have pets, you can treat your pets. So, the main thing is just trying to reduce your tick bite exposure.鈥�
Are there people out there who are undiagnosed?
Merritt: 鈥淎bsolutely. I think a lot of people go undiagnosed, and they go to the gastroenterologist. They go to the dermatologist, and you know, they may not know this is what was the cause of their symptoms. I鈥檝e had patients that were having symptoms for five years before they found out that they had alpha-gal.鈥�
鈥奃o all lone star ticks have alpha-gal?
Merritt: 鈥淲e鈥檙e not sure. It鈥檚 very difficult to measure tick saliva, but the group in Mississippi did measure tick saliva, and the lone star ticks and the blacklegged tick contained alpha-gal in their saliva. And it鈥檚 present in the little, tiny seed ticks as well as the adult ticks.鈥�
鈥奌as this changed how you live your life?
Haigh: 鈥淚 try to not let fear impact my life too much. I still live an outdoor life. I鈥檓 not going to stop walking my dogs in the woods. I鈥檓 not going to stop mountain biking, but I鈥檓 more aware. One thing that I just really am glad about is that this is getting more attention. And people are becoming more aware of it.
鈥淧robably one of the most impactful things that could happen is having a food label, something like a gluten-free or a vegan food label would be hugely impactful for people that suffer with this.
鈥淎gain, you go to a restaurant and you don鈥檛 know about cross-contamination and you know people are using beef tallow and fry later, so you may think you鈥檙e doing the right thing and eat a French fry and have a reaction.鈥�
This interview was edited for clarity.
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