WHEN LEAH Spears-Blackmon woke up on Sept. 3, 2017, and turned to her wife, Micah, she tried to speak but couldn’t. They’d just spent a fun Labor Day weekend celebrating Micah’s birthday and were staying with a few close friends and family at a cabin near Beaver Lake. But today, something was wrong. Really wrong. She saw it on Micah’s face, and felt it on her own when she reached out and touched her lips with her hand.“What in the world?” she thought. Her lips were swollen, her lower lip jutting out as far as the tip of her nose. When she opened her mouth, she felt a throbbing pain, something akin to getting hit straight in the face with a softball. She sprang from bed to check her reflection in the bathroom mirror.
“I was horrified,” she says now, recalling the moment over the phone—a little over a year after the incident. “It was scary. My lip was stretched so tight it was starting to hurt.”
When she looked at herself, she noticed some puffiness around her eyes as well and a nagging rash on her neck. But Leah was no stranger to mystery rashes and odd swellings. There was that one time at a wedding, back in June 2017, when her tongue was so swollen she couldn’t even clamp her teeth without biting the sides of her mouth. And then a few months later, one of her eyes ballooned to the point that she could barely even open it. She blamed it on seasonal allergies and bad mascara. But this time around, it was too severe to be something so run-of-the-mill. She was stumped. One of Leah’s friends called a doctor, Dr. Greg Kresse. Luckily, Dr. Greg had a hunch: alpha-gal syndrome, a type of food allergy that causes swelling, hives and rashes after consuming mammalian meat (and sometimes its byproducts). In other words, symptoms much like Leah’s.
The doctor asked what she’d eaten. “Nothing,” Leah said. She hadn’t even had breakfast yet. Dr. Greg doubled back. Well, what about yesterday? Leah mentioned the pizza she’d had at Micah’s birthday—a meat-lover’s concoction of pork, beef and a heaping helping of cheese. That clinched it for Dr. Greg. After the call, Leah took doses of Benadryl, Zantac and Prednisone, and when the blast of medication kicked in that evening, she felt somewhat normal again.
The lab work confirmed the diagnosis. For someone like Leah—someone who’s never suffered so much as heartburn after a tear-jerkingly spicy meal, much less been allergic to any ingredient—the news seemed out of the blue. But the thing worth noting about alpha-gal is that it is out of the blue, brought on by the bite of a pesky little tick called the “Lone Star” tick, named for the white dot found on the backs of females.
IN THE U.S., Lone Star ticks are mostly found in the southeastern and eastern parts of the country. According to the Arkansas Department of Health, reported alpha-gal allergy cases are 32 percent higher in the southern United States than other parts of the country. But, as mentioned on the department’s website, it’s impossible to tell what the real numbers are since doctors are not obligated to report the number of alpha-gal allergy patients who walk through their doors. It’s not a new thing, necessarily—it’s just become far more visible of late.
Alpha-gal is the more common name for galactose-alpha-1,3-galactose, a sugar that coats proteins produced by most mammals, save for apes, some monkeys and humans. When a tick bites a human and introduces alpha-gal into their bloodstream, the body’s immune system responds by pumping out antibodies that work to put up a fight. (Researchers hypothesize that Lone Star ticks have a specific enzyme in their saliva which prompts the body to think of alpha-gal as a threat.) In a way, the body develops an allergic immune response that is triggered every time it encounters and recognizes the antigen (in this case, the alpha-gal in meat).
The reactions vary from person to person, which is why alpha-gal syndrome is so hard to diagnose. Not to mention, the allergic reaction is often delayed, with symptoms showing up several hours after exposure. Symptoms include, but are not limited to, hives, stuffy or runny nose, headaches, nausea and gastrointestinal distress. But things could also take a more serious and life-threatening turn, like needing to be whisked off to the ER due to anaphylaxis.
The treatment? It’s a matter of completely eliminating mammal meat, which might seem like a clear-cut solution at first. But for those who are severely allergic, this not only means letting go of steak dinners, but also less obvious things like certain toothpastes and lotions. Even some flu vaccines contain pork-based gelatin, which can trigger an allergic reaction. Although there’s no cure, symptoms can lessen or disappear altogether over time, so long as patients are not exposed to another tick bite.
For Leah, whose cuisine of choice is Mexican and who runs a catering business with her wife, it was tough lifestyle change to get used to. On the phone, she waxes poetic about cheese dip and recalls the last time she dipped into a bowl full of it at a Little Rock restaurant and noticed how it aggravated the rash on the back of her neck.
“Not a lot of people know about [alpha-gal],” she says. “If you said to a server in a restaurant that you have alpha-gal, they’d be like, Wait, what? It’s kind of a funny term. I have told servers in different situations, Listen, I carry an EpiPen. I do feel like I have to be careful and really express the severity of it. With peanut and shellfish and things like that, typically the reaction is within a few moments. With alpha-gal, I could be long gone from that restaurant, in home and in my bed, waking up with a severe reaction. It’s not anything that they ever see, so it’s different.”
Over the holidays this past year, Leah coined the phrase “a gal with alpha-gal” and jokingly began throwing it around, often using it as a hashtag on social media when she’d stumble across a restaurant with particularly good service or a delicious alpha-gal friendly (read: dairy-free) cheese. The catchphrase ultimately became the title of her blog, which she kicked off last month at her friends’ bidding, after they pointed out the lack of a one-stop-shop resource for folks navigating a life with alpha-gal. Through her posts, Leah plans to share her experience with the allergy, as well as research and a slew of recipes.
“I’ll tell you this—the point of A Gal with Alpha-gal is to find the positive, because if you don’t, you can get really discouraged,” she says. “Removing dairy is something that’s really difficult. It’s a filler ingredient. But I’ll tell you what, my gut feels better. I’ve experienced so much relief. There’s the silver lining.”
A bite from any tick, not just the Lone Star variety, can be quite problematic, as ticks are known to transfer a slew of gnarly diseases. Prevention is always the best medicine. Here are a few tips to keep yourself protected from ticks when heading out for a weekend in nature:
-Wear a long-sleeved shirt and pants when hiking and camping in wooded areas, and tuck your pant legs into your socks.
-Look for clothing with insect-protection technology, like BugsAway. These products feature a built-in insect repellent, which works well to keep ticks—and mosquitos!—away from your body.
-Opt for light-colored clothing so you can spot ticks before they make their way to your skin.
-When hiking, stick to the center of the trail and away from grassy, brushy or wooded areas where ticks like to lurk.
-From time to time, check yourself—or better yet, have a friend check you—for ticks. Don’t forget often-missed areas like behind the knees, elbows, armpits, ears and neck. Ticks like to hunker down in warm areas of the body.
-If you bring your pets along for the hike, make sure to inspect them as well.