Nikki Shaw doesn’t remember ever being bitten by a tick, but the Joplin woman said she was getting sick in July 2018.
“There were times when my husband had to pick me up off the bathroom floor. I was so sick I couldn’t walk,” Shaw said. “I was having muscle issues, just extreme fatigue, rashes, all of it. Finally, after several doctors and no one knew what was going on, I finally went to an allergist who was here locally and she said, 'I think you have this alpha-gal,' and we did the testing and it came back positive.”
Wendy Rich, of Joplin, was diagnosed with alpha-gal syndrome earlier this year, and she said the impact has been dramatic.
“It has changed every aspect of my life,” Rich said. “It started back in February. I’d wake up every morning and look like I had Botox. I’d go to work; I had these huge lips and we couldn’t figure it out. I hadn’t changed anything, but I’d go to bed, I’d wake up and I’d be swollen. So I finally went to my doctor, and she referred me to an ear, nose and throat specialist and the ENT ran the test. It was positive for alpha-gal.”
The two women recently formed the Joplin Area Alpha-Gal Awareness Group, which meets next at 5:30 p.m. Thursday, Oct. 3, at the Joplin Public Library. It will be the group’s third monthly meeting.
Its September meeting featured a talk by Dr. Tina Merritt, an allergist with the Asthma and Allergy Clinic of Northwest Arkansas in Bentonville, Arkansas, who discussed the allergy to mammal meat and mammal meat byproducts that can be caused by a tick bite.
Merritt was part of the team of doctors at the University of Virginia who identified the alpha-gal allergy in the mid-2000s and has been studying its causes and effects.
She said the allergy is difficult to diagnose because people usually start reacting between two and six hours after they’ve eaten beef, pork or other mammal meat, or been exposed to their byproducts. Another complication is that people don’t begin to show symptoms of the allergy for up to two months after the tick bite.
Merritt has the allergy herself. She believes she was exposed when she was a child, long before anyone knew about the allergy.
“I was bitten by a tick at Girl Scout camp in the fourth grade, and by fifth grade I was doubling over in pain on hamburger day,” Merritt told the group. “The doctors told my parents I was faking it, that I wasn’t really sick. But it’s probably within two months of the tick bite I developed symptoms.”
Merritt said she was on the team with Dr. Thomas Platts-Mills, a University of Virginia professor of medicine and microbiology who identified the mammal meat allergy while investigating the deaths of people who had been given an experimental drug to fight cancer.
The drug, which was produced using proteins from cows, proved generally effective, but a small fraction of the patients who received it died of mysterious causes. Merritt said her team determined the people who died were allergic to mammal meat products.
She said Platts-Mills connected the mammal meat allergy to ticks when he started becoming sick.
“He’s a hiker, and he turned out to be allergic to the cancer drug even though he had never had the drug,” Merritt said. “We didn’t know it was related, but he got bitten by a bunch of baby seed ticks in his hiking shoe and he developed a significant allergy to alpha-gal. He also developed a delayed reaction to eating red meat. He’d break out into hives about six hours after eating red meat.
“The first time it happened, he was visiting in England, and he put two and two together and figured out it was related to the tick bites. He ... calls me and says, 'Aren’t you allergic to beef and pork?' I said, 'You know I am, I have been since I was a kid.' He said, 'It’s tick bites," I said, 'No, it’s not.' It turns out it is.”
When the Lone Star tick bites a host, it transfers a sugar molecule called alpha-galactose, or alpha-gal, into the body that can cause some people’s immune systems to produce antibodies to it. The molecule is found in meat such as pork, beef, venison, bison and goat.
Merritt said there’s no treatment other than avoiding exposure to mammal meat products. People can usually eat poultry or seafood without issues, but beef and pork show up in a variety of other products, from candies to soaps.
“I travel some for work, and I take blankets to lay on and cover up with because you never know what kind of laundry detergent a motel uses,” Rich said. “... I’m sensitive to perfumes, to candles and fragrances. As a matter of fact, a few days ago, a couple of people had cologne on and my face doubled in size and I had hives and had to go home from work. Animal oils are sometimes used in fragrances to make the scent last longer.”
Merritt said the number of people diagnosed with the alpha-gal allergy remains relatively small. Probably thousands of people suffer from the symptoms but don’t know about the allergy.
Even many doctors and others in the medical community are unaware of it and its symptoms.
Rich said the public is welcome to attend the meetings to learn more.
“We just need people to come out and understand what this is and how it affects people,” she said.
The Joplin alpha-gal group shares information on a Facebook page at “Joplin Area-Alpha-Gal Awareness.” Another group meets in Northwest Arkansas. That group can be found by searching for “Alpha Gal Encouragers - NW Arkansas.” More information about the alpha-gal allergy can be found at https://www.cdc.gov/ticks/alpha-gal/index.html.