More than 34,000 people in the United States have tested positive for alpha-gal syndrome, according to a 2021 article. A publicly generated map by people who say they have the condition indicates the syndrome may have spread as far as Washington and Hawaii, though this it does not mean that victims have been bitten by ticks in those states.
Although the conditions present mildly for some, others experience hives, swelling, wheezing, diarrhea, or even anaphylaxis, which can be fatal. Unlike many other allergic conditions, symptoms can take several hours to appear after consuming meat products, making diagnosis of the syndrome difficult.
“It’s never predictable,” said Jennifer Platt, an associate professor of public health at the University of North Carolina at Chapel Hill and co-founder of the nonprofit Tick-Borne Conditions United. “I know people who spend the night in the emergency room parking lot, waiting for a reaction,” she said, adding, “I think of alpha-gal syndrome as Lyme 2.0.”
“There are so many parallels to providers telling patients it’s all in their head,” said Dr. Platt.
Even after treatment, some symptoms of Lyme disease, including pain and fatigue, can persist for months, according to the CDC. But some medical experts remain skeptical about this chronic version of the disease and disagree about its presentation, diagnosis, and treatment.
Some people with alpha-gal, especially in states where ticks were thought to be less common, described the frustration of seeking a diagnosis and being met with disbelief from medical professionals.
In Ms. Fleshman’s case, it took more than seven years and about a dozen trips to the emergency room before she finally found out what was wrong. At one point, an infectious disease doctor told him that he couldn’t have alpha-gal syndrome because there were no lone star ticks in the state of Delaware.