A tick bite made my life a living hell
Alpha-gal syndrome is spread by bites from the Lone Star tick. ondreicka – stock.adobe.com
After seeing 11 doctors without answers, Ashley Courtney finally broke down in the shower in May 2021. For over a year—including while pregnant with her third child—she had suffered from terrifying heart palpitations, painful hives, and a poison-ivy-like rash covering her body.
“I was itching to a point where I felt mentally crazy,” said Courtney, 37, owner of CrossFit Fredericksburg in Virginia. “It would get worse and worse. I felt like I was allergic to existing. I thought, if I don’t get help soon, this is gonna kill me.”
It wasn’t until months later, when her hairdresser suggested she look into a little-known tick-borne illness called alpha-gal syndrome, that Courtney found an answer. This condition causes severe allergic reactions to certain meat products. The disease made national headlines last week after a New Jersey pilot died, marking its first known fatality. The Centers for Disease Control and Prevention estimates that up to 450,000 Americans, particularly in the eastern and southern U.S., have contracted the illness.
Alpha-gal syndrome, caused by bites from the Lone Star tick, can trigger symptoms ranging from stomach pain and brain fog to anaphylactic shock. People may react to meat, mammal-derived products like shampoo, candy, or Tylenol, and in some cases, even the fumes from cooking meat.
A Long, Frustrating Journey
Courtney’s symptoms began in September 2019 with red, itchy rashes that resembled eczema. “People asked if I changed my laundry detergent or was stressed. I said, no, something is wrong,” she recalled.
Her condition worsened: “oozing” skin inflammation, swollen lymph nodes, hives, and heart palpitations made her stop working out—a major blow for the fitness-focused gym owner. Over the next 18 months, she saw oncologists, allergists, and surgeons, but none could diagnose her. She visited the ER five times and even underwent a biopsy for lymphoma.
“I started wishing something was wrong so I didn’t feel so crazy,” Courtney said. The ordeal affected her pregnancy. Fear of eating triggered a small birth weight for her baby, and she didn’t sleep for nine months.
Finally, after her hairdresser mentioned alpha-gal syndrome in February 2021, Courtney convinced her previously skeptical doctor to test her—and the result was positive. She vaguely remembered a tick crawling on her neck in July 2019. Even though it didn’t appear to bite, its saliva was enough to transmit the disease.
Life After Diagnosis
Courtney now lives on a strict diet of eggs, chicken, salmon, rice, and vegetables, and receives shots during severe flare-ups. Social gatherings remain a challenge. “I didn’t want to go anywhere. You almost feel like a burden,” she said. Now, she carefully preps her meals before traveling or attending events, and checks restaurant menus to avoid cross-contamination.
Similar Struggles Across the U.S.
Debra Schaefer, 63, of Center Moriches, New York, had a near-fatal reaction in August 2023. After experiencing brain fog and dangerously low blood pressure, she went to a walk-in clinic, where she was sent home only to face another severe episode later that day. She was eventually diagnosed with alpha-gal syndrome.
Her husband, Robert, 58, also tested positive after a tick was found on him. The couple now follows a cautious diet, relying heavily on chicken and vegetables, and often cooks their own meals to avoid accidental exposure. Even contact with dogs or cross-contaminated restaurant food can trigger reactions.
“They can come six to 10 hours after you eat,” Debra said. “So people don’t connect that, ‘I ate this and then I got sick.’”
She urges anyone experiencing unexplained symptoms to get tested.
Alpha-gal syndrome is rare, puzzling, and life-altering, but awareness and dietary vigilance can help patients regain control over their health.
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