More than 34,000 people in the United States tested positive for alpha-gal syndrome, according to a 2021 document. A map publicly generated by people who say they suffer from the disease shows the syndrome may have spread to Washington and Hawaii, though that doesn’t mean sufferers have been bitten by ticks in those states.
Although the conditions are mild for some, others suffer from hives, swelling, wheezing, diarrhea or even anaphylaxis, which can be fatal. Unlike many other allergic conditions, symptoms can take several hours to appear after eating meat products, making the syndrome difficult to diagnose.
“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 response,” she said, adding, “I’m thinking of alpha-gal syndrome like Lime 2.0.”
“There are so many parallels to patients being told by their providers that it’s all in their heads,” Dr. Platt said.
Even after treatment, some symptoms of Lyme disease, including pain and fatigue, may persist for months, according to the CDC. But some medical experts remain skeptical of this chronic version of the disease, disagreeing about its presentation, diagnosis and treatment.
Some alpha-gal sufferers – especially in countries where ticks are thought to be less common – described frustration with seeking a diagnosis and encountering distrust from medical professionals.
In Ms Flashman’s case, it took more than seven years and about a dozen trips to the emergency room before she finally he realized what was wrong. At one point, an infectious disease doctor told her she could not have alpha-gal syndrome because there were no single star ticks in Delaware.