AGS is just one of many tick-borne illnesses that are increasing in frequency. In fact, Lyme disease and AGS are only two of 17 mentioned on the Centers for Disease Control and Prevention’s (CDC) site, and rates are on the rise. Climate change is extending the warm months of tick season, increasing tick numbers, and giving them more chances to find us.
“Even if you don’t live in an area where ticks are a problem, you may get exposed on vacation,” says Georges Benjamin, M.D., executive director of the American Public Health Association. Scott Commins, M.D., Ph.D., an associate professor of medicine and pediatrics at the University of North Carolina at Chapel Hill, was on the research team that first linked AGS to ticks. “These are not symptoms that would bring you to the allergy office,” he says. Today his practice deals almost exclusively with AGS, because of both word of mouth and the syndrome’s prevalence in the area.
The number of people with AGS is hard to pin down—Dr. Commins conservatively estimates 50,000 in the U.S. Residents of the Southeast and the Midwest are most at risk, with the greatest number of cases in Missouri, Arkansas, Virginia, and North Carolina. “Alpha-gal syndrome isn’t on the radar everywhere, so your doctor may not be familiar with it,” says Jennifer Platt, Dr.PH, who co-founded the nonprofit Tick-Borne Conditions United with Maine native Beth Carrison. Carrison was diagnosed with both AGS and Lyme disease, while Platt contracted ehrlichiosis, a tick-borne disease that can bring on flu-like symptoms such as fever, chills, and severe headache.
What are alpha-gal syndrome symptoms?
As tick-borne diseases go, Alpha-gal syndrome is relatively new on the medical radar. Months after getting a tick bite they’ve totally forgotten about, a person will eat red meat and show symptoms hours later. While some people with AGS get hives and similar skin reactions, others have gastrointestinal issues like heartburn or diarrhea, or the cardiac symptoms Smith experienced. That January night, she didn’t have any idea that her dinner of spaghetti with meat sauce had set them off, or that it had all started with a tick bite months earlier, and the ER doctors didn’t either.
How does alpha-gal syndrome spread?
A handful of species carry the biggies among diseases: Black-legged ticks (a.k.a. deer ticks) spread babesiosis and Lyme disease; American dog ticks and brown dog ticks can give you Rocky Mountain spotted fever; lone star ticks spread ehrlichiosis and appear to be the biggest culprits in U.S. cases of AGS. “Lone star ticks can be aggressive,” says Platt. “They know you’re there and will actually come running for you.” Fortunately, not every bite results in an infection, says Dr. Commins.
Different tick-borne illnesses cause various nonspecific symptoms, such as fever, because the bacteria, viruses, or parasites ticks transmit can act on a number of systems in the body. Lyme disease is a bacterial infection the tick picks up from an infected animal it bites and passes on to you. Babesiosis is caused by a parasite passed from an infected tick.
AGS is different: The alpha-gal sugar is part of the saliva of some healthy ticks; in some people, a bite from one of these ticks induces an inappropriate immune response that sensitizes their immune system so the next time they encounter this sugar—when eating meat, for example—they respond with an allergic reaction to the meat. “Think about it like a pollen allergy that brings on sneezing and other symptoms of hay fever in the spring,” says Nicole Baumgarth, D.V.M., Ph.D., director of the Johns Hopkins Lyme and Tickborne Diseases Research and Education Institute. Pollen isn’t dangerous, but your immune system misfires as if it were.
People with AGS have to avoid not just meat but also a laundry list of products with hidden mammalian ingredients—things like gummies, lotions, and the blood thinner heparin. Some people even react to fumes from bacon frying, lotions, and perfume, which can be anxiety-inducing. “You need to constantly be on guard against accidental exposure,” says Carrison, who is especially sensitive to scent. “Recovery from a reaction can mean days to weeks of brain fog and diarrhea.” If Smith’s husband eats red meat, the two have to wait several hours before they can kiss.
Alpha-gal syndrome treatments
There isn’t yet a treatment for AGS; some sufferers take a daily antihistamine to deal with small exposures and minor symptoms and carry an emergency dose of epinephrine, says Dr. Commins. Even so, for outdoorsy folks like Barb H., tick bites are just part of the landscape. She was diagnosed with AGS in 2021, after a year of fatigue, diarrhea, and bouts of severe nausea. Finally, a body-wide rash sent her to an allergist, who asked if she’d ever been bitten by a tick. “I laughed pretty hard,” she says. As a widow in St. Charles County, MO, who tends seven acres, “between the dogs and the horses I’m always outside,” she says. A recent wasp sting restarted her GI symptoms and sent her to the ER. Still, she can’t give up being outdoors. She watches her diet and sprays cedarwood oil on herself to keep ticks at bay.
As scary as tick-borne illnesses are, there is hope. Dr. Commins has patients who have been very sick with AGS who are now adding pork and beef back into their diets. Carrison is in remission. “We really do think alpha-gal syndrome can go away over time,” says Dr. Commins.
How to protect against alpha-gal syndrome and tick bites
No matter where you live, follow these rules of the great outdoors:Know where ticks hang out (tall grass, wooded areas).
- Wear light-colored clothing so they’re easy to spot, and tuck pants into boots.
- Use a lint roller on your clothes when you get home.
- Check skin, especially armpits, groin, breasts, and folds.
- Shower immediately and watch for rashes.
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