CRYSTAL CITY, Mo. (KMOX)-- 24-year-old Maggie Holmes was camping near Clearwater Lake in Piedmont, Missouri when she was bitten by a tick last August. Three days after the bite, she started having issues.
"My entire body just basically feels like it is shutting down," Holmes tells KMOX. "It starts to hurt really bad, joint paint, I can't move, I feel like I have a fever."
Already working with a personal trainer, Holmes was able to narrow down certain foods that would trigger the pain. In October, she was tested for Alpha-Gal Syndrome, a rare tick-borne illness, and it came back positive.
"The biggest life changing thing is: I am fume reactive," Holmes said. "If I go to a restaurant and they are cooking burgers or steaks I will likely have a reaction from that."
Alpha-Gal Syndrome is associated with having had a prior tick bite and then getting exposed by eating red meat.
"It could be months later, or years later, developing what appears to be like an allergic reaction," said Dr. Farrin Manian, infection diseases physician and chair of the Department of Medicine at Mercy St. Louis. "It could be mild, it could be very severe at times requiring people to go to the emergency room."
There's no real treatment for Alpha-Gal but Dr. Manian says some people can grow out of it over time but others do not.
Dealing with Alpha-Gal Syndrome has caused Maggie Holmes to rethink the way she lives her life. Even something as simple as going to the grocery store. There's an app called FIG where she can scan every item she buys to make sure it's safe for her to use. Basically anything with mammal byproducts do not play nice with Alpha-Gal.
"Anything with gelatin and glycerin almost always breaks me out in hives," Holmes said. "I hate to say this but it's actually in toilet paper. Some toilet paper brands use gelatin, which is a mammal by product, and I do react to that."
Maggie blogs about her condition on Facebook. She calls it, "Alpha Gal Diaries." She's been posting about helpful tips and tricks for people who have just been diagnosed or those just wanting to more about this rare tick-borne illness.
Alpha Gal Syndrome is a relatively new tick borne disease but it is becoming more common. "There may be 100,000 people each year in the country that might actually have it," said Dr. Manian. "I suspect there may actually be more that maybe haven't been diagnosed yet."