When Maggie Holmes went camping last summer, she hoped to return with some fun memories, not a rare illness that has drastically altered her life.
Holmes, 24, of Crystal City was bitten by a tick during the camping trip, which led to her contracting Alpha Gal Syndrome (AGS), which causes a variety of allergic reactions, including one to red meat.
If someone who has contracted the syndrome eats red meat, the reaction could be life-threatening, according to the Centers for Disease Control and Prevention website.
Between 2010 and 2022, about 110,000 suspected cases of AGS were reported to the CDC, although the number of cases could be higher, the website says.
Lone star ticks are known to cause the syndrome, but other types of ticks have not been ruled out, according to the website.
Holmes said she knows exactly when a lone star tick bit her and gave her the illness.
“I was bitten Aug. 12, 2023, while camping at Clearwater Lake in Piedmont,” she recalled. “I found the tick in me. It was in my ankle. It was lodged in pretty good. We used tweezers to get it out.”
Soon after that Holmes began experiencing health problems.
“After (the bite), that area was very itchy and sore and hurt,” Holmes said. “That lasted about six months. But, within three days, I had other reactions. I got GI (gastrointestinal) pain, very severe. I also had vomiting, trouble breathing and the hives.”
While Holmes knows much more about the syndrome now, it took time for her to realize what illness she was suffering from.
“I didn’t go to a doctor until October,” she said. “My mother-in-law, Michelle Holmes, is a nurse. She told me about Alpha Gal Syndrome, and she thought I could have it.”
Holmes recalls a specific incident that convinced her to see a doctor.
“The final reaction before I went to a doctor, I thought I was going into anaphylaxis,” she said. “I got better just before going to an emergency room, but I did go to the doctor.”
Holmes said her doctor did not believe she had AGS until he saw the results of her blood test.
“My doctor was skeptical,” she said. “He has tested other people for it and it never came up positive. They drew blood and sent it off. It took about a week. I did have it.”
Holmes said her doctor sent her to a Washington University allergist, who alerted her to the dangers AGS posed.
“The allergist recommended staying away from anything that has mammalian byproducts,” Holmes said. “That’s not only any red meat from a mammal, but other things made from mammals, like gelatins made from mammals.
“The byproducts are in things you would not necessarily think about, like laundry detergent, makeup and skin-care products. Also, dairy and several other types of food.”
She said she continues to experience problems from AGS and does not need to eat red meat or apply a makeup containing red-meat byproducts to experience a flare-up from the illness.
“I would say I’m still in the very beginning stage of it,” she said. “I’m kind of still figuring it out. I am very fume-reactive. For example, I made my husband meatballs (during the last week of February) and had a reaction. It’s very annoying.
“I can’t even walk into a steakhouse restaurant without getting a reaction. I have been able to go into a burger restaurant without having a reaction.”
Those with AGS may eat chicken, turkey and fish, but need to avoid many other types of food, Holmes said.
“It’s very hard,” she said, more so because of the byproducts inside red meat products. I would say the hardest things to give up are pasta and snack foods, like Cheez-Its and pasta, specifically fettucine alfredo.”
Holmes said she has experienced many symptoms from AGS.
“There are side effects not talked about enough – brain fog, like from COVID, short-term memory loss, vitamin deficiency due to your limited diet, joint pain, overall feeling awful after a reaction.”
Holmes said she hopes to someday get to eat red meat without a negative reaction.
“My allergist has told me there will be a time I can return to red meat,” she said. “I just don’t know when. I pray I wake up one day and it’s magically gone.”
Dr. Chandra Dommaraju
Dr. Chandra Dommaraju, a Mercy Jefferson Hospital physician who specializes in infectious diseases, confirmed that AGS cases are uncommon.
“It’s being noticed more recently, but it is very rare,” Dommaraju said. “(People) would likely acquire it in the spring or summer, but symptoms can come up anytime. The sexes seem to get it equally.
“The tick saliva will have Alpha Gal. When (those who have it) eat red meat, they could get any symptom from nausea, skin rash and belly pain to anaphylaxis (an extreme allergic reaction that can be deadly).”
He said no cure exists for AGS, and those who contract it must be prepared to deal with it for long periods of time – and the symptoms can reappear after finally leaving.
“You treat the reaction,” Dommaraju said. “There is no treatment to get away from the reaction to eating red meat. Fortunately, (the symptoms) go away after months or years. It can come back, too.”
Dommaraju said there are no sure ways to avoid lone star ticks, but people can take precautions when going into the great outdoors.
“Use common sense,” he said. “Wearing long sleeves, long pants and using insect repellant.”
Facebook page
Holmes said her ordeal led her to start a Facebook page about AGS.
She said she started the Alpha Gal Diaries Facebook page in January hoping to spread awareness about the illness, which is largely unknown to the public.
Holmes also said she started the page so those with AGS can support each other.
“I have 500 followers, mainly from the Midwest,” she said. “They’re exchanging recipes, ideas, advice, as well as support for one another.”
Holmes said those who visit The Alpha Gal Diaries also can learn about foods and products they can eat or use safely.
“You can find laundry detergent and other items made without mammalian byproducts,” she said. “My Facebook page has a vegan-product sponsor, L’avant Collective. They make cleaning products.”
Holmes said she intends to maintain The Alpha Gal Diaries Facebook page even if her symptoms subside.
“I think it’s so easy to be ignored about my situation, and I don’t want to stop educating people.”
Holmes is a photographer and owns Desert Luna Photography in St. Louis. She is married to Ryan Holmes.