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 had been suffering through frightening heart palpitations, painful hives and a poison-ivy-like rash all over her body for more than a year — including while she was pregnant with her third child.
“I was itching to a point where I felt mentally crazy,” said Courtney, a 37-year-old 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,” she said.
After months of the baffling health nightmare, her hairdresser mentioned that she should look into a little-known tick-borne disease that causes an allergic reaction to some meat products: alpha-gal syndrome.
The violent allergy — which last week killed a New Jersey pilot in its first-known fatality — has long been a living hell for other Americans, with up to 450,000 people infected in the US, according to the Centers for Disease Control and Prevention.
Up to 450,000 Americans have been infected with the disease, largely in the eastern and southern US, with Maryland, Virginia and North Carolina having among the most reported case, according to the CDC.
People with the illness told The Post it has caused everything from near-fatal health scares to social ostracization and maddening repeated misdiagnoses.
Some said they unknowingly contracted the disease — which is spread by bites from the Lone Star tick — everywhere from a park on Long Island to their own private driveway.
Symptoms range from stomach pain to brain fog and even anaphylactic shock after contact with meat and mammal-derived products, including items as innocuous as shampoo, candy and Tylenol.
To avoid the symptoms, patients must adopt a diet so strict it would make a vegan Dr. Atkins blush, with some reacting just from the fumes of meat cooking.
A frustrating mystery
The mysterious illness hadn’t yet made headlines in September 2019, when Courtney first started getting red, itchy rashes all over her body.
“It looked like eczema at first. People said, ‘Did you change your laundry detergent?’ ‘Are you stressed?’” she said. “I said, no, something is wrong.”
She soon got “oozing” skin inflammation, swollen lymph nodes, hives and heart palpitations so intense she had to stop working out — a major blow for the fit gym owner.
“I felt like the whole world was attacking me,” she said.
Over the next year and a half she saw 11 doctors — oncologists, allergists, surgeons, the works — none of whom could diagnose her.
“I’d go from doctor to doctor and everybody blew me off,” she said.
It got so bad, she visited the ER five times, had a biopsy for lymphoma and one scheduled for bone marrow.
Even her husband, Steve, who works as an ICU nurse, and was her fierce advocate, couldn’t solve the mystery.
“I started wishing something was wrong so I didn’t feel so crazy,” she said.
The hellish ordeal unfolded while she was pregnant and kept her from properly eating and sleeping. “The baby was small because I was afraid to eat,” she said. “I didn’t sleep for nine months.”
“Looking back, I was reacting to everything — toilet paper, sugar, glycerin in lotions and fabrics — because they were mammal-derived,” she said.
“I would have a bite of a cupcake and have a heart palpitation because of the sugar,” she said, adding refined white sugar is processed using bone char.
After her hairdresser suggested in February 2021 that she might have alpha-gal syndrome, Courtney convinced her doctor — who had previously brushed off the possibility that it was — to test for it. The test came back positive.
Courtney now vaguely remembers finding a tick crawling on her neck in July 2019, months before any symptoms popped up, while standing in her driveway. But the bloodsucker never “latched” and may not have even fully bitten her, she said.
“I just flicked it away and never thought about it again,” she said. “You can get it just from the tick’s saliva.”
Living with alpha-gal
Courtney now lives on a strict diet of eggs, chicken, salmon, rice and veggies and takes shots when she gets major flare ups.
After her diagnosis, however, she found herself avoiding social settings because she didn’t want to be seen as 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,” Courtney said. “You almost feel like a burden. I sometimes want to keep it a secret,” she added.
Now, she preps her food before get-togethers or travel, and researches the menus of restaurants to avoid cross-contamination of meat products.
“The hardest thing was that I wasn’t an average case,” she said. “I wish [doctors] would have taken me more seriously.”
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.
“I had brain fog and then I felt very very sick. I went to a walk-in doctor, who said, ‘Your blood pressure is dangerously low, you need to go to an emergency room, now,’” said Schaefer, who works with special needs kids.
The emergency room doctor put her on an IV, gave her Benadryl and sent her home — but hours later, her blood pressure dropped dangerously low again.
“I realized later that I was in anaphylactic shock,” she said of the life-threatening allergic reaction. “It’s scary that the ER didn’t know what was happening.”
Roughly six weeks later, a different doctor suggested she get tested for alpha-gal syndrome and the test came back positive.
She then remembered her husband, Robert, had found a tick crawling on him at Terrell River County Park near their home in Center Moriches in July 2023.
Robert, a 58-year-old insurance salesman, soon tested positive for the disease too.
“My reaction is hives — I get them from head to toe, and it will last weeks,” he said. “It’s like poison ivy.”
“I was getting it from taking Tylenol PM because it has glycerin in it,” he said.
The couple now eats a lot of chicken and vegetables and 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 said. “I bring my vegan cheese to the restaurant with me.”
When it comes to holiday meals or parties, they often opt to do the cooking, so they know what’s in the dishes. Or they eat before they go.
“Turkey and chicken are okay but we have to be careful how it’s prepared,” said Debra. “Socially, it’s a pain in the neck.”
Even a lick from a dog can trigger an allergic reaction, along with cross-contaminated food such as restaurant french fries — but the flare-ups are largely under control due to their diet change.
Ultimately, she said, the allergy is baffling because there’s usually long delay between eating meat and the symptoms appearing.
“They can come six to 10 hours after you eat,” Schaefer said. “So people don’t connect that, ‘I ate this and then I got sick.’”
“Big picture, if you’re having any of these symptoms and you can’t figure it out — go get tested.”
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