A rising number of Americans are claiming to suffer from an immune syndrome disorder and meat allergy caused by a sugar found in tick bites.
The disorder is known as Alpha-gal Syndrome, named after a carbohydrate found in most mammals except humans and apes — and the saliva of some ticks, according to the Springfield News-Leader.
Tick bites can lead to an allergy to Alpha-gal, meaning that eating meat that contains the carbohydrate can cause an allergic reaction.
Symptoms range from mild to the potentially fatal. People have described everything from anaphylaxis to chronic diarrhea, vomiting, or breaking out in hives.
Some people are so allergic that even the fumes from meat cooking nearby can trigger reactions, says Dr. Tina Merritt, who trained with the doctor who discovered AGS, developed the test for the allergy and herself suffers from it.
The CDC says that AGS may be triggered by the bite of a lone star tick in the United States, but other kinds of ticks have not been ruled out. Other tick species have been connected with the development of AGS in other countries.
It doesn’t trigger immediate reactions like shellfish or peanuts – and can often go years, even decades without being diagnosed.
The allergy was discovered in 2001 when Dr. Thomas Platts-Mills, a medicine professor at the University of Virginia, was working on a monoclonal antibody drug to treat cancer when he noticed it causing anaphylaxis in a few patients.
After a person treated with the drug, called Cetuximab, they realized that it had alpha-gal carbohydrate attached to the monoclonal antibody because it was grown using animal cells.
Platts-Mills, somewhat ironically, also contracted AGS and used his own blood to experiment.
Perhaps the most famous person to publicly acknowledge suffering from AGS is mystery writer John Grisham, who himself caught it after a tick bite and no longer eats meat.
He told Allergic Living his last outbreak came after eating rabbit meat in Paris in 2012 ‘It was pretty ugly.’
Jaclyn Scott, a woman who came forward as having the syndrome, said she believes it’s been with her since 2017. She has referred to it as ‘a horror show.’
Two days after frying bacon for her family, she said ‘I looked like I had been in a massive fight. I was almost anaphylactic. My brother rushed me to the urgent care.’
Scott says her symptoms include developing rashes, had a swollen belly and other skin sensitivities.
Doctors originally thought she had rheumatoid arthritis and thought doctors looked at her ‘like I am crazy.’
She is one of the people triggered by fumes of meat, which means she can’t go out to eat and had to even quit her job in a printing company because animal byproducts are used in the ink.
Scott says she can’t go to grocery stores without difficulty and has reactions to various lotions and medicines.
There are no official national or state-by-state case counts for AGS, but Merritt claims to have over 1,000 patients, many she sees remotely.
Information given to the CDC reported 34,256 positive cases between 2010-2018, but those are the most recent figures available, with states in the Midwest and south showing the most cases.
Dr. Erich Mertensmeyer, who has treated hundreds of patients, says that in some regions, anywhere from one to three percent of the population could have it.
The CDC recommends contacting an allergist if you show symptoms and checking clothes and other items for ticks, especially when going outdoors.