This story is a tiny bit about moving, but mostly about alpha-gal. Stick with me…
There was a time I swore I’d never uproot my children; that I’d of course raise them in the state and county they were born.
But here we are, once again in a different state, different home, different life than I’d expected.
It doesn’t surprise me anymore, but I smirk a little now when I hear people try to decipher “God’s will” or a certain “leading” through much prayer or soul searching.
I’ve told people this before: most of our life changes have been born of pain, either the discomfort-kind where the metaphorical shoe no longer fits because the foot has grown, or the kind where my very own physical body refuses to cooperate. This is a story of the latter.
Three years ago exactly I came home from a walk with the dog in the city park near our house. I’d developed hives—something I attributed to the early September snow and my brisk pace rounding the corners of the park loop. Hives are the worst kind of misery, because scratching never relieves the itch, and the itch itself is madness. During the early days of misery, I thought my immune system was breaking down. I cried at the doctor’s office and begged for help. She gave me a tiny prednisone pack and referred me to an allergist.
In the meantime, we went on a family camping trip. It was agony when it should have been exhilaration. We were leaving the city in the time of lockdown Covid, off to take cooling dips in Lake Powell, get sand between our toes, watercolor the sunsets. Instead the family dropped me off at another urgent care where I was given Hydroxyzine that knocked me out. I’d drowse off in the hatchback of the minivan or a deflated air mattress in the tent and awaken to kids laughing and roasting marshmallows without me.
By the time the allergist did his blood panel magic on me, it had been six weeks of chronic hives. The only thing he could find was that I had alpha-gal syndrome, a tick-borne disease. Did eating meat bother me? he wanted to know.
I didn’t think so—at least, I didn’t draw a strong connection between eating meat and having hives. I wasn’t sick to my stomach after eating a burger, and I don’t eat much meat anyway. He shrugged and told me to take two 24-hr Allegra per day, and more prednisone for flareups. If this didn’t work, he said, we’d try Xolair shots for chronic idiopathic (which means heck-if-I-know-what’s-causing-this) urticaria.
For two and a half years I did this, not knowing in any way how mammalian protein had any effect on my body. How could I be allergic to a food if the food caused me no immediate distress?
After so many years, I tested the waters of no Allegra. This was a total mind game, because the Allegra was my juju, my good luck charm. I swear I could get hives just by thinking them into existence at this point. It was the Allegra that worked as my calming cigarette, my tonic to appease the gods.
As I tried to wean off of the Allegra, I began doing some more research. I mostly didn’t even believe pork or beef affected me in any way, or that it had cause the hives. Up until very recently, I could not find much info on alpha-gal, so little studies have been done. But what I have found has been so eye-opening, so incredibly helpful, that I must share it:
Alpha-gal syndrome is an anomaly in the allergy world. What is known is that a tick must have been on an animal with alpha-gal in its system before it spreads it to humans. The tick that carries it mostly is the lone star variety, which is commonly found in the southeastern United States but is found in pockets throughout the country.
The tricky part of alpha-gal is that its symptoms do not present in the patient until many months after being bitten by the tick. It’s as if the protein builds up in one’s body until the immune system begins to attack it. Furthermore, once the body is poised to attack, the patient’s symptoms usually do not present until 2-6 hours after consuming mammalian meat. This delayed onset is why it usually presents in dramatic, unexpected fashion, and also why it is incredibly difficult to diagnose.
I had been in Missouri five months prior where I think I was bitten (ticks in April in southern MO are common). My onset of symptoms was in September. Some folks have gastrointestinal issues—mine was solely chronic urticaria. Hives present in 93% of alpha-gal patients. I also didn’t know that my symptoms weren’t caused only by pork and beef meat consumption, but also milk, cheese, gelatin, and other mammalian-derived products, including gel cap aspirin.
My allergist never suggested I stop eating pork or beef or mammal products because it seemed a non-issue during our honest office visit. Did those meats make me feel sick? Not at the time of consumption! How I wish now that he had given me a list of foods to avoid!
I have not had a recent blood test for alpha-gal markers. However, I have had other ongoing health issues I cannot help but wonder were triggered inside my body because of my immune response to alpha-gal. It is tricky—who will diagnose me? How can I be helped with something that is so unseen and unknown? Where and when will I find complete relief?
I don’t know the answers.
We moved out of Denver, and one not-so-small reason was because of a tick bite that messed with my health and complicated our pandemic experience. I’d thought the stress of homeschooling had brought on the hives, and Denver wasn’t looking like they had any plans for teachers and students to return swiftly to class. After we moved out of state, I began to heal and eventually teach school where my kids attended.
And now our family has moved again—and this story continues, and it will be told, too.
But to the hive sufferers: don’t discount a tick bite. If you cannot find a physician to run a blood panel, avoid mammalian meat and products to see if you get some relief. Take an Allegra. (Unsolicited advice, but the non-dangerous kind.) And move, if you have to—pain might very well lead to greener pastures.
