Massachusetts Takes Action on Tick-Borne Alpha-Gal Syndrome

Massachusetts has recently joined over a dozen other states in requiring healthcare providers and blood laboratories to report instances of an uncommon tick-borne disease called alpha-gal syndrome.

This potentially severe condition can lead to allergies to red meat and, in some cases, to mammal-derived products like dairy. While reactions can vary from mild to life-threatening, they can result in anaphylactic shock. In 2024, a pilot tragically became the first known fatality from alpha-gal after consuming a hamburger at a barbecue.

The primary cause of this illness is the lone star tick, which had been predominantly reported in places like Arkansas, Kentucky, and Virginia for over a decade. However, as the disease spreads, a report from Stony Brook University estimates that up to 450,000 Americans might be living with this condition, often undiscovered until their first allergic episode.

A resident from Bella Vista, Arkansas, Tony Haigh, is one of those living with alpha-gal. He feels fortunate, as his reactions to mammal products are limited to hives.

“I was covered in hives for about three weeks, which pushed me to seek testing and get answers,” he shared. “Fortunately, my case was diagnosed fairly quickly.”

Haigh was diagnosed by allergist and immunologist Dr. Tina Merritt at the Allergy and Asthma Clinic of Northwest Arkansas. Merritt has conducted extensive research on alpha-gal and played a crucial role in developing the detection test.

According to Merritt, reactions can manifest in various forms, ranging from hives and nausea to more severe cases of anaphylaxis. “The tricky part about alpha-gal is that reactions can be delayed. Some individuals might not connect their symptoms to the hamburger they had for dinner,” she explained. “Patients often wake up in the middle of the night feeling dizzy due to low blood pressure, which can escalate rapidly.”

Insights from Tony Haigh and Dr. Tina Merritt

How did you feel about your diagnosis? What helped alleviate your hives?

Haigh: “It was definitely a frightening experience. Now I carry an EpiPen with me. Thankfully, I haven’t had to use it, but I always have one nearby. Stopping the consumption of red meat and mammal products was my first step, and the initial year was quite a challenge. Antihistamines became my go-to, and now my diet primarily consists of chicken, eggs, and vegetables.”

How careful are you about avoiding meat?

Haigh: “It’s very much on my mind. When dining out, I worry about potential cross-contamination. Family or friends preparing meals for me often try their best, which I appreciate, but sometimes the substitutes they choose still link back to pork or beef.”

Dr. Merritt, you have historical insights into allergies and medicine. Can you tell us about Dr. Thomas Platts-Mills’ work in this field?

Merritt: “He discovered that a cancer drug was causing adverse reactions due to the presence of alpha-gal antibodies. The drug was developed using an animal cell line with alpha-gal attached. This led our research into tick bites, revealing links between the lone star tick and allergies related to meat consumption.”

How does the tick transfer the alpha-gal molecule to humans, and can the allergy ever go away?

Merritt: “Research indicates that both the lone star tick and the blacklegged tick carry alpha-gal in their saliva. It’s possible for the allergy to enter remission if one avoids bites, but once bitten again, the immune system might retain ‘memory’ of the allergy.”

Haigh expressed his concern: “I worry about being bitten by another infected tick and worsening my symptoms.”

On Martha’s Vineyard, cases surged from two in 2020 to over 500 in 2024. Some locals, including tourists, are opting for strict vegan diets to prevent symptoms.

Merritt pointed out the challenges of everyday living for those with alpha-gal: “Mammal-derived ingredients show up in many daily products. With skincare or medication reactions, it’s hard to pinpoint the cause. I myself have alpha-gal and didn’t realize a pill I was taking contained problematic components.”

What advice do you have for those anxious about alpha-gal?

Merritt: “There are plant-based insect repellents, and other options like DEET and permethrin. Some clothing lines feature tick-repellent fabric. It’s crucial to minimize ticks in your environment, especially if you have pets.”

Do you believe many people remain undiagnosed?

Merritt: “Definitely. Many individuals visit various specialists without a proper diagnosis, potentially struggling with symptoms for years without knowing they have alpha-gal.”

Do all lone star ticks contain alpha-gal?

Merritt: “It’s hard to say definitively, but testing has shown that both lone star and blacklegged ticks can harbor alpha-gal.”

How has alpha-gal altered your life?

Haigh: “I try not to allow fear to dictate my lifestyle. I continue to enjoy outdoor activities and remain proactive. It’s encouraging to see more awareness about this issue. Having clear food labels for those affected could be life-changing, especially in social settings where cross-contamination is a risk.”

This conversation has been edited for clarity.