Ashley Courtney found herself breaking down in tears in the shower back in May 2021 after seeing her 11th doctor, who still couldn’t give her answers. For over a year, even during her pregnancy with her third child, she endured terrifying heart palpitations, painful hives, and an awful rash similar to poison ivy that covered her body.
At 37 and running CrossFit Fredericksburg in Virginia, she explained, “It was so itchy that I was going crazy. The symptoms just kept getting worse and worse. I felt like I was allergic to their presence.” She feared that if she didn’t get help soon, her life was at risk.
After months of struggling without clarity on her health issues, her hairdresser suggested she might have alpha-gal syndrome, a rare tick-borne condition leading to allergic reactions to certain meats.
Tragically, this aggressive allergy led to the death of a New Jersey pilot last week and has been a nightmare for many Americans, with the CDC estimating that around 450,000 are affected in the U.S., primarily in the eastern and southern regions, especially Maryland, Virginia, and North Carolina.
People suffering from this syndrome report everything from severe health scares to feeling socially isolated and being misdiagnosed multiple times. Some have unknowingly contracted the disease from the bites of Lone Star ticks found in various places, even in their own driveways.
Symptoms can range widely—from stomach pain and brain fog to life-threatening anaphylactic shocks after consuming meat or anything made from mammals. Patients may need to follow strict diets that sound almost extreme, with some reacting just to the fumes of cooking meat.
An Irritating Mystery
Back in September 2019, before this disease gained any attention, Courtney began noticing red, itchy rashes appearing on her body. Initially, they resembled eczema, and people suggested she might have changed her laundry detergent or was simply stressed. “I said, no, something is wrong,” she remembers.
As time passed, her condition worsened, leading to “oozing” dermatitis, swollen lymph nodes, and severe hives, all of which forced her to stop exercising—quite a significant adjustment for a fitness enthusiast.
“I felt like the whole world was attacking me,” she admitted. Over a year and a half, she consulted 11 different doctors, including specialists like oncologists and allergists, but none could pinpoint her issue. Even her husband, an ICU nurse, couldn’t figure it all out. “I started wishing there was something wrong, just so that I wouldn’t feel so crazy,” she shared.
This ordeal, occurring during her pregnancy, kept her from eating and sleeping properly; she recalls that her baby seemed small because she was afraid to eat. “I couldn’t sleep for nine months,” Courtney said. Everything, from toilet paper to sugar and ingredients in lotions, seemed to set off reactions, since they all derived from mammals.
“Even a bite of a cupcake could trigger palpitations,” she explained, noting that refined sugar is often processed using bone char.
It wasn’t until February 2021, after her hairdresser’s suggestion, that Courtney got tested for alpha-gal syndrome, despite her doctor initially ruling it out. The test came back positive. She vaguely remembers discovering a tick on her neck in July 2019, just before her symptoms began, but brushed it off. “It can only be transmitted through the tick’s saliva,” she noted.
Living with Alpha-gal
Now, she adheres to a rigid diet, primarily eating eggs, chicken, salmon, rice, and vegetables, and gets injections to manage inflammation. However, following her diagnosis, she began to shy away from social gatherings to avoid coming off as “needy” regarding her food restrictions.
“When I was first diagnosed, I felt depressed. I just wanted to stay home. It almost feels like a burden,” Courtney expressed. Preparing her own meals and meticulously checking restaurant menus for cross-contaminations have become necessities.
“The hardest part is feeling abnormal. I really wish doctors had taken me seriously,” she said.
Same Disease, Various Symptoms
In a similar vein, 63-year-old Debra Schaefer from Center Moriches, New York, faced a health scare in August 2023 while working as a summer camp counselor. She felt faint and assumed she was just under stress, until a doctor told her her blood pressure was dangerously low, and she needed to head to the emergency room immediately.
After being treated with an IV and Benadryl, Schaefer returned home but felt her blood pressure plummet once again. “I later realized I experienced anaphylactic shock,” she said, expressing her disbelief that ER staff hadn’t recognized her condition.
Weeks later, after receiving a recommendation for an alpha-gal syndrome test, which confirmed her fears, she recalled that her husband, Robert, had found a tick on him back in July 2023, likely at a nearby park. Soon after, he too tested positive.
His symptoms included hives covering his body for weeks—something he compared to poison ivy. “Tylenol PM has glycerin in it, so I caught it from that,” he recalled.
The couple now primarily consumes chicken and vegetables and opts for vegan meals when dining out. “When you’re at a restaurant, you really need to ask a lot of questions about what’s in your food,” Robert advised, even going so far as to bring vegan cheese along.
During holidays or parties, they prefer preparing their meals to ensure they know exactly what’s in them. “Though turkey and chicken are generally safe, the cooking method matters,” Debra added. The couple experiences the social challenges of their condition, knowing even a pet’s lick or cross-contaminated fries can trigger reactions.
Allergies, it seems, are complex. Symptoms from meat consumption can take hours to appear, often making it difficult for individuals to connect the dots right away. “They might show up six to ten hours post-eating,” Schaefer explained. “If you experience symptoms like these, getting tested is crucial.”
