At deer camp last year, the crew with Red Dirt Roots Outdoor TV had a little more excitement than they bargained for when host Art Jillson’s tongue swelled to “the size of a tennis ball.”
“We were sitting around the campfire, and all the sudden he starts feeling weird and his tongue is swelling up. We barely got him to the hospital in time,” said Perry Faulkner, another of the show’s hosts.
It’s a different story for local taxidermist Vance Montgomery. He had a deer in his shop from Texas, and he said a tick from that deer bit him. It wasn’t his first tick bite by a long shot, but this one formed a hard spot, then overnight it became a cyst the size of a dime; soon it was the size of a baseball.
“My wife is a nurse, and I told her to look at it,” Montgomery said. “She said, ‘We’re going to the hospital.’ ... Ended up I had a staph infection. I’m pretty sure, almost 100% that’s when I got it.”
“It” is the alpha-gal allergy, sometimes called red meat allergy or mammalian meat allergy because those who have it will have an allergic reaction to eating any kind of meat or fats from mammals, be it pigs, goats, cattle, deer, elk, moose or any other mammal.
The allergy is linked to the bite of a tick that is common in Oklahoma called the lone star tick, and the allergy is better known year after year because more people are getting it. Surprise is common, for those who get the allergy, about just how many other people have it or know someone who does. Little is known about it.
“We put it out on our Facebook as a heads-up for hunters, and I couldn’t believe the reaction,” Faulkner said.
The closed membership-only Alpha-gal Facebook page has grown 298 members in just the past month, according to page administrator Mike Dee of Kansas City. Tulsa is the sixth-highest represented city on the page, which is international. Cities with the most members are Lynchburg, Virginia, and Sydney, Australia, he said.
“We get about seven requests a day,” Dee said. “When I first joined in 2013, it would take months to seven new members. ... You think it’s crazy now, just watch and wait.”
Researchers at the University of Virginia tied the tick to the allergy by chance, as the allergic reaction turned up in cancer patients given a treatment that contained the sugars in the early 2000s.
A team led by Dr. Thomas Platts-Mills published a paper on the allergy in 2008. Researchers report spread of the allergy is linked to expansion of the lone star tick, once most plentiful in the Southeast, but now more plentiful across the South, Midwest and north into Canada.
The UVA School of Medicine continues to lead the way on alpha-gal research, recently discovering aspects of the allergy that could lead to treatment, or a cure, but they also found link between the ticks and heart disease.
In simplified terms, alpha-gal is a sugar that exists in every mammalian species except primates. It also exists in the saliva of a lone star tick and, for unknown reasons some people will develop an allergic reaction to the sugar after being bitten by a tick.
Some are people who have been bitten numerous times by ticks with no adverse reaction.
Some, like Montgomery, are sure when they had a bite that was severe. Others, like Jillson, may have no reaction to being bitten by a tick, but had several trips to the hospital in anaphylactic shock before doctors figured out what was wrong.
He was tested for heart disease and several other possible maladies, he said.
“After the third trip to the emergency room, I said, ‘That’s it, I’m done,’ we have to figure this out,” he said.
A blood test at the Oklahoma Institute of Allergy Asthma & Immunology in Oklahoma City gave him the answer.
Dr. Dean Atkinson at the institute said he sees about three to five new cases each year. Some may have the allergy for life while others may see the symptoms disappear in two to five years, he said.
Some may have severe reactions to a small amount of meat or even react to products with gelatin in them or cross-contaminated foods from restaurant grills (like a turkey burger cooked on the same grill as beef hamburgers). Some say they have reactions to milk products, too.
“The current belief is that if you stay away from getting tick bites and stay away from red meats, it can go away after some time,” Atkinson said.
A blood test can reveal whether someone has the allergy, but Atkinson said he has had patients who no longer have a reaction to eating red meat but also still have a positive blood test.
“So it’s not 100%,” he said.
“People have written that they thought they had fibromyalgia and it was alpha-gal,” he said. “But, classically, it’s hives, other typical allergic reactions or the delayed anaphylaxis.”
“They just told me don’t eat any mammal meat, period. I can eat birds and fish but no mammal meat,” Jillson said. “It kills me because my freezers are full of every kind of wild game you can think of. I would have venison every other day or wild pork.”
It was a hamburger at lunch that led to the problem at deer camp last season, he said.
A factor of alpha-gal that makes it different from other allergies is the delayed reaction. Unlike a peanut or shellfish allergy that causes immediate issues, the meat has to be digested and then the body reacts to the sugars.
“I had the burger for lunch, and then it was 7 or 8 that night that I had the reaction,” Jillson said.
He hopes to find out about treatments or a way to lesson his symptoms. He keeps three epinephrine autoinjectors handy when he takes trips into the backcountry.
“I’m just hoping it will go away and not be a lifelong thing,” he said.
Montgomery said he is attempting to treat his allergy by eating just a small bite of red meat daily.
“It’s a struggle for me every day,” he said. “Every now and then a guy would like to have a hamburger, you know. I eat a lot of chicken and fish, turkey burgers, and turkey bacon and turkey sausage. I can eat duck; that’s my red meat now.”
Montgomery said it was just a few weeks after his trip to the hospital that he started noticing “sort of an indigestion” on days when we’d have his usual breakfast sausage.
“It was just making me feel sick, sort of an indigestion but different, it was respiratory. Sometimes it felt like I couldn’t breathe, sometimes it was like I was having a heart attack,” he said.
Montgomery said he thinks his allergy is relatively mild. He’s trying to reintroduce his body to meat a little bit at a time — not unlike the immunotherapy for people who get allergy shots that contain tiny amounts of substances that trigger allergic reactions, enough to stimulate their immune system but not cause a full-blown reaction.
“I take one bite of red meat a day. I’ve been doing that for about a year,” he said. “At first it bothered me some but now it doesn’t bother me at all. I might start doing two bites a day. Who knows? I made need to back off, or maybe I won’t have to worry about it ever again.”