More than 34,000 people in the United States have tested positive for alpha-gal syndrome, according to a document from 2021. A publicly generated map from individuals claiming to suffer from the condition indicates that the syndrome may have spread to Washington and Hawaii, although that doesn’t mean sufferers were begging in those states.
Although the conditions present mildly 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 consuming meat products, making the syndrome difficult to diagnose.
“It’s never predictable,” said Jennifer Platt, adjunct professor of public health at the University of North Carolina at Chapel Hill and co-founder of the nonprofit. Check conditions endured 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 in terms of patients being told by their providers that it’s all in their head,” said Dr. Platt said.
Even after treatment, some Lyme disease symptoms, including pain and fatigue, may persist for months. According to the Center for Disease Control and Prevention But some medical experts remain skeptical of this chronic version of the disease, disagree on its presentation, diagnosis and treatment.
Some alpha-gal sufferers, especially in states where ticks were thought to be less common, have 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 a dozen trips to the ER before she finally found out what was wrong. At one point, an infectious disease doctor told her that she couldn’t have alpha-gal syndrome, because there were no solitary ticks in the state of Delaware.