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Patients with meat allergy linked to tick bite want cases tracked in Maine

The U.S. CDC says cases of Alpha-Gal Syndrome are on the rise.

MAINE, USA — Last month, the U.S. Centers for Disease Control and Prevention released research revealing that a potentially life-threatening red meat allergy may impact almost half a million Americans.

Alpha-Gal Syndrome is linked to a bite from a Lone Star Tick, but federal health officials haven't ruled out other ticks, including the black-legged or deer tick. 

While experts at the University of Maine Tick Lab say the number of Lone Star ticks found in our state is minimal, some patients want the Maine CDC to track cases of Alpha-Gal among Mainers.

Beth Carrison was diagnosed with Alpha-Gal Syndrome a decade ago. But gastrointestinal problems and unexplained rashes had started years after she found an embedded tick.

But she couldn't figure out what was happening until a whiff of bacon in the grocery store caused excruciating hives. While she is now in remission, she is always on guard against ticks and other life-threatening exposures.

"I was anaphylactic within three minutes after being around somebody's perfume left on their coat from the night before that had a mammal carrier in it," Carrison explained.

Alpha-Gal Syndrome is a tick-borne illness that leads to allergic reactions from eating red meat, including beef, deer, pigs, or goats. Some people also develop allergies to dairy and other byproducts from processing those animals, like gelatin and cosmetics.

Primarily linked to a bite from the Lone Star tick, but other ticks, including the black-legged or deer tick, have not been ruled out. Experts at the University of Maine tick lab say that while Lone Star ticks have no established populations, more are being brought in from other parts of the country with higher numbers.

Unlike other food allergies, the wide-ranging symptoms, including lips, face, or throat swelling, can take minutes, hours, or even days. A total of 110,000 cases of AGS have been detected across the country since 2010, but recent reports by the US CDC found that number could be as high as 450,000. One federal study found more than a third of 15,000 doctors surveyed had no idea what it is or how to treat it.

"Physicians are not educated on Alpha-Gal Syndrome and the far-reaching impacts; they just aren't," Carrison added empathically.

Dr. Herb Cushing an infectious disease specialist who does infection control surveillance for the Northern Light Health System, disagrees.

He says patients with mild-to-moderate symptoms can be managed with antihistamines. Adding that newly updated diagnosis and treatment information for AGS on the CDC's website benefits patients and providers.

"If you walked into your primary care office and said 'I think there is something that I am eating with meat, and I am reacting to it. I am getting hives, GI symptoms; they will figure it out with you,'" Cushing explained. 

Carrison, who served on a federal Tick-Borne Disease Working Group that provided more than 70 recommendations on AGS to the feds, helped co-found Tick-Borne Conditions United, which offers education, training, support, and advocacy for AGS and other tick-borne diseases.

The nonprofit has launched a campaign to get Maine and states nationwide to add AGS to conditions reported to the U.S. CDC. Lindsay Hammes, the spokeswoman for the Maine CDC tells News Center in a statement.: 

"The Maine CDC will review and respond to any forthcoming legislation. We continue to provide education to the public and health providers on this condition as part of broader public health promotion involving tick-borne illnesses," Hammes said. 

Meanwhile, Carrison carries a medical alert card stating allergies to red meat, including drugs and medical devices containing mammal products. 

"I fear that I get in a car accident and can't speak for myself, and they start putting things on me, in me, and around me that will cause a reaction," Carrison explained.

She says she won't stop fighting to ensure patients and providers know the facts about this potentially life-threatening allergy. 

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