More than 34,000 people in the United States have tested positive for alpha-gal syndrome, according to a 2021 paper. A map publicly generated by individuals who say they suffer from the condition indicates that the syndrome may have spread as far as Washington and Hawaii, though this does not mean the sufferers were bitten by ticks in those states.
Though the conditions present mildly for some, others suffer hives, swelling, wheezing, diarrhea or even anaphylaxis, which can be fatal. Unlike many other allergic conditions, the symptoms may take several hours to appear after consuming meat products, making the syndrome difficult to diagnose.
“It’s never predictable,” said Jennifer Platt, an adjunct professor in public health at the University of North Carolina at Chapel Hill and a co-founder of the nonprofit Tick-Borne Conditions United. “I know people that 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 in terms of patients being told by their providers that it’s all in their head,” Dr. Platt said.
Even after treatment, some symptoms of Lyme disease, including pain and fatigue, can linger for months, according to the C.D.C. But some medical experts remain skeptical of this chronic version of the disease, disagreeing about its presentation, diagnosis and treatment.
Some sufferers of alpha-gal — especially in states where the ticks have been thought to be less common — described the frustration of seeking a diagnosis and encountering 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 her she could not have alpha-gal syndrome, because there were no lone star ticks in the state of Delaware.