A tick bite gave me Alpha-gal syndrome. Now, I'm allergic to meat and its byproducts and only eat 1 meal a day.
Lon Wilhelms
- Lon Wilhelms got Alpha-gal syndrome from a lone star tick bite.
- The syndrome made her allergic to mammals and their byproducts.
- She starts her day with a specific coffee brand and only eats one meal a day — dinner.
This as-told-to essay is based on a conversation with Lon Wilhelms, about her experience living with Alpha-gal syndrome. It has been edited for length and clarity.
Everybody has a different story. For me, it started when I came down with COVID-19 in July of 2022, and all these things started going wrong with me. I had heart palpitations, hives, tongue and eye swelling, and I even fainted a couple of times.
No matter how much rest I got, things didn't get better. I wound up going through about four months of testing, with doctors searching for signs of celiac disease, Lyme disease, and many other things.
Eventually, I came back positive for Alpha-gal syndrome. And I had never heard of it in my life.
Alpha-gal is more than just a red meat allergy
Reuters
When I first got the call, the nurse who delivered the news said I just had to avoid eating hooved animals, like pigs and deer. She told me that Alpha-gal was commonly known as the red meat allergy, and that if I didn't eat those animals, I should be okay.
I was pretty curious about that. It seemed so odd to me. So I went online and started doing some research, and found out it could be about more than avoiding hooved animals.
For me, I found I was sensitive to anything that comes from a mammal. That includes meat and milk, but also many shampoos, cosmetics, lotions, medications, and even certain brands of bottled water.
And I found out it's not just as simple as eating vegan products. A seaweed that's commonly used in them has a similar chemical structure to the sugars in meat that I'm allergic to, and can also make me sick.
So I realized that in the five months since I had started feeling bad, I had been ingesting the things that were making me sicker.
I got overwhelmed very quickly
There are no national regulations that make manufacturers include information about mammalian meat on their product label. So I got overwhelmed really quickly, unsure of what foods I could trust.
For the first month after I found out, all I felt safe eating was Ritz crackers and peanut butter. It got so bad that my doctors had to start giving me injections to make sure I had enough nutrients to survive.
Part of the reason this was so hard for me to adjust to was because I had never heard of anything like this happening. So when the CDC released its report in July about how Alpha-gal is becoming more common, it made me hopeful that awareness would spread.
The more people hear about it, I hope, the more they'll begin to understand it.
CDC
The guessing game
The lone star tick is common in the rural part of the East Coast I live in. It's the species thought to be responsible for Alpha-gal.
I was last bitten by a tick two years before I was diagnosed. My bite took a while to heal, but I brushed it off, figuring I had just developed a bit of an allergy to tick bites. I never suspected anything more serious.
My doctor thinks my symptoms had stayed dormant for years because my immune system was strong enough to keep them down. But when I got so sick with COVID, it allowed the syndrome to push past my body's defense system and become active.
CDC
Some people can have milk or butter and be fine. Others can't even eat food that is prepared in the same place as red meat.
It's just this whole guessing game. Regardless, most of us take daily antihistamines, carry stronger products like Unisom melts, and keep EpiPens with us at all times, in case we have a severe reaction.
Oh, and if you're wondering, some of us can't even take certain types of Benadryl, because it has gelatin.
It's a wonderful community
Here's the thing about Alpha-gal: I've found not a lot of people understand it, and many doctors don't even understand it. It was really confusing and lonely figuring things out for myself early on.
But through all my research I found a Facebook group for people living with Alpha-gal. That was a game-changer.
The people there had already done all the heavy lifting for me, researching what products are safe and what products are dangerous. They took the time to learn the chemical names for the different animal byproducts and identify them on labels, or to mail manufacturers themselves with questions.
Now, there are pages and pages of brands that they've sorted through that I know I can eat. On my own, I might not have bothered eating foods I wanted to eat for fear of having a reaction.
It's because of this group that I did eventually learn how to start incorporating normal foods again. It's a really wonderful community.
Lon Wilhelms
Now, I usually eat one meal a day
Now, my diet is quite different from what it was before Alpha-gal, but it's better than it was early on in my diagnosis. I really miss cheese, but for other products, like butter, I've found some excellent plant-based substitutes.
I find it's easier for me to think about what I can eat. That includes birds and seafood. I mean honestly, I'm lucky to have that.
Most days now, I have my morning coffee with a brand I found through the Facebook group, I head to work, and then I come home to have a meal with a safe protein and some vegetables.
It might not seem like much, but I'm learning every day, and I'm just relieved to have what I can have now.
I hope other people never have to know this disease the way that I do. I hope they never get it. But they should learn what it is and how they can get it so that they're more vigilant when it comes to ticks.
You should avoid the pests at all costs. But if you do get bit, if it's possible, take the tick with you to the doctor to see if it's infected.
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