After the eleventh doctor couldn’t figure out what was wrong with her, Ashley Courtney broke down sobbing in the shower in May 2021.
She’d been dealing with terrifying heart palpitations, painful hives and a rash that looked like poison‑ivy all over her body for more than a year—right through the period she was pregnant with her third baby.
“I was itching to a point where I felt mentally crazy,” she told us, adding that the itching seemed to 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,” Courtney said, her voice set on a trembling grid.
After months of this baffling health nightmare, a hairdresser suggested looking into a little‑known tick‑borne disease that causes an allergy to some meat products: alpha‑gal syndrome. That violent allergy, which last week killed a New Jersey pilot in its first‑ever fatal case, has long made life miserable for up to 450,000 people in the US, according to the Centers for Disease Control and Prevention.
Up to 450,000 Americans have been infected, especially in the eastern and southern states, with Maryland, Virginia and North Carolina reporting the highest numbers, the CDC notes. People who have the illness speak of everything from near‑fatal health scares to social ostracization and maddening misdiagnoses. Many say they unknowingly caught the disease—from a park on Long Island to their own driveway—after a bite from the Lone Star tick.
Symptoms run the gamut: stomach pain, brain fog, even anaphylactic shock after touching meat or mammal‐derived products, including seemingly harmless items like shampoo, candy and Tylenol. To dodge these attacks, patients must follow a diet so strict it would make a vegan doctor‑attkins blush, with some reacting only to the fumes from cooking meat.
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### A frustrating mystery
When Courtney first began to develop red, itchy rashes across her body in September 2019, the news only made headlines a few months later. Initially, the rash resembled eczema, and people asked, “Did you change your laundry detergent?” “Are you stressed?” She replied, “No, something is wrong.”
Soon, she developed “oozing” skin inflammation, swollen lymph nodes, hives and punishing heart palpitations that forced her to stop her workout routine—a major setback for the fit gym owner.
“I felt like the whole world was attacking me,” she says.
Over the next eighteen months, Courtney saw eleven different doctors—oncologists, allergists, surgeons and others—yet none could diagnose her. “I’d go from doctor to doctor and everybody blew me off,” she recalls. Her condition escalated so badly that she went to the ER five times, had a biopsy to rule out lymphoma and scheduled a bone‑marrow biopsy.
Even her husband Steve, an ICU nurse and her most steadfast advocate, couldn’t solve the mystery. “I started wishing something was wrong so I didn’t feel so crazy,” she says.
This hellish ordeal unfolded while she was pregnant and disrupted her eating and sleeping patterns. The baby was smaller because she feared eating. “I didn’t sleep for nine months.”
Looking back, Courtney admits she was reacting to things like toilet paper, sugar and glycerin in lotions, all of which are mammal‑derived. “I would have a bite of a cupcake and have a heart palpitation because of the sugar,” she says, adding that refined white sugar is processed using bone char.
After her hairdresser suggested alpha‑gal syndrome in February 2021, Courtney convinced her doctor—who had previously dismissed the possibility—to test for it. The results came back positive.
Courtney vaguely recalls finding a tick crawling on her neck in July 2019, months before any symptoms appeared, while standing in her driveway. The tick never “latched” and may not have fully bitten her. “I just flicked it away and never thought about it again,” she says. “You can get it just from the tick’s saliva.”
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### Living with alpha‑gal
Now, Courtney lives on a strict diet comprised of eggs, chicken, salmon, rice and veggies, and she takes shots whenever a major flare‑up occurs. After the diagnosis, however, she found herself sidestepping social events to avoid seeming uptight or “needy” about food.
“When it was fresh, it was depressing ‑ I just wanted to stay home. I didn’t want to go anywhere,” she admits. “You almost feel like a burden. I sometimes want to keep it a secret.”
She now preps food for gatherings or travels and researches restaurant menus beforehand to avoid cross‑contamination of meat products. “The hardest thing was that I wasn’t an average case,” Courtney says. “I wish doctors would have taken me more seriously.”
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### Same disease, varying symptoms
Debra Schaefer, 63, of Center Moriches on Long Island, New York, was struck by a similar health scare while working as a summer camp counselor in August 2023. She experienced brain fog and a feeling of severe sickness, prompting her to visit a walk‑in clinic. The doctor declared her blood pressure dangerously low and urged her to go to the ER immediately. The ER staff administered an IV, gave her Benadryl and sent her home, but her blood pressure dropped dangerously low again hours later.
“I realized later that I was in anaphylactic shock,” she said. “It’s scary that the ER didn’t know what was happening.”
About six weeks later, a different doctor suggested testing for alpha‑gal syndrome, which came back positive. Schaefer remembered her husband Robert, a 58‑year‑old insurance salesman, spotting a tick on him at Terrell River County Park near their home in July 2023. Robert soon tested positive as well.
“My reaction is hives ‑ I get them from head to toe, and it will last weeks,” Robert explains. “It’s like poison ivy.”
“I was getting it from taking Tylenol PM because it has glycerin in it,” he says.
The couple now eats a lot of chicken and vegetables; when dining out, they often play it safe by ordering vegan. “When we go out, we really have to ask a lot of questions,” Robert says. “I bring my vegan cheese to the restaurant with me.”
For holiday meals or parties, they usually take on the cooking themselves so they know what’s inside. Or they eat before they go out. “Turkey and chicken are okay but we have to be careful how it’s prepared,” Debra adds. “Socially, it’s a pain in the neck.” Even a lick from a dog can trigger a reaction, as can cross‑contaminated food such as restaurant french fries, though most flare‑ups remain under control thanks to their dietary adjustments.
Ultimately, Schaefer notes that the allergy is confusing because symptoms typically appear six to ten hours after eating meat, making it hard for folks to link the two. “They can come six to ten hours after you eat,” she says. “So people don’t connect that, ‘I ate this and then I got sick.’”
If you’re experiencing any odd symptoms that you can’t pin down, she advises, “Go get tested.”
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