The Bite That Ended My Beef Addiction

I knew I had been bitten. Six Lone Star ticks showing like a constellation on my left leg all sunk in and drinking deep. They'd been there for hours and I hadn't noticed since I'd been working in jeans all day. To be honest, I'm not sure how they got there with all the peppermint oil and bug spray I'd applied for this very reason. Oh well, I thought as I removed the arachnids.

Oh well was the wrong reaction.

Oh well kept me from diving into the potential effects of the bites I'd received. I knew about Lyme, knew ticks were bad, but had no idea about the haunting reality I'd been submitted to.

For a few months, nothing seemed amiss. I ate what I wanted, lived life carefree. All that changed one night after eating a 7PM steak dinner with a friend. At first I was fine. Showered, went to bed with my wife around 10PM like normal. Started dreaming about reverse sear methodology when... hold on.... I woke up feeling... not right... There was no more Oh well. There was only rushing to the restroom to feel my body giving out on me in every sense as an unknown force took hold of my faculties to end my short 22-year life.

I started to cry out, barely a whimper in my weakened state, hoping my wife would hear me and call for an ambulance. Vision closing in as I sat there shaking. Next thing I know my wife is shaking my EpiPen in my face and asking permission to inject it. I'd forgotten about the Epi since my mastocytosis hadn't flared up enough to warrant its use in the 2 years since I'd been diagnosed.

She stabbed my thigh. My vision stopped dimming. 911 was on the way and I needed to make it to the hospital. We were sitting out in the truck (me vomiting, my wife calling my mother) when the ambulance pulled up and rushed me down HWY 380 to Texas Health Denton.

The staff was fantastic. Me shivering and convulsing while strapped to a gurney was the opposite. IV fluids and Zofran helped me stabilize as the epinephrine started to wear off. By 4AM I was released and in need of a meal.

Whataburger is open 24 hours. Don't expect a good burger at 4AM. I ate it anyway not knowing that beef had gotten me here in the first place. Thankfully, my body had some kind of tolerance built up with the recent exposure and last bits of Epi in its bloodstream. No additional reaction at this time.

But we still didn't know what had caused the reaction. My religious background said demon! but the Facebook groups my wife had rabbit-holed into made it clear what this delayed anaphylactic reaction to beef actually was. Alpha-Gal Syndrome.

We made sure: got a lab test (Alpha-Gal Syndrome Allergy Panel from Quest Diagnostics) and confirmed my IgE levels for beef were over 400x higher than baseline. I wasn't optimistic about ever eating beef again and that was crushing.

The allergist wanted to tolerance test me. I feared death and didn't come back. My parents stayed optimistic as they could, but they couldn't seem to relate to my situation no matter how hard they tried. My wife had to stop me from sneaking beef jerky once. It all felt like a fever dream, almost like a joke.

I've had AGS a little over 4 years now and it's still not a joke. There have been several moments where cross-contamination or a secret ingredient gets the best of me and I'll have to take 3+ Benadryl to feel good enough to sleep. Thankfully, my levels have decreased, but the false hope and tentative nature of AGS resolution is a sink I had to cut out to stay sane.

I'm not expecting to heal spontaneously. I'm expecting to always be aware, to always ask about food prep in restaurants, to mostly cook at home with whole food ingredients, to always communicate my nature to friends and family in hope that they remember (they don't) the severe consequences of accidentally serving me chicken tenders fried in tallow (It's NOT SAFE just because it's CHICKEN).

Those are baseline expectations. With enough time and reminder I have seen certain groups improve their behavior in the kitchen and with ordering food. I expect regressions because good behaviors aren't reinforced more broadly (these are white Southerners raised on BBQ).

I have hope in the professionals pursuing the true nature of the disease to be able to develop a therapeutic that works for patients broadly. I think that could solve some of the problem. I think awareness solves the major part, though, and sites like FDA docket FDA-2024-P-4512, which I was so excited to see come online, now sit apparently ignored.

Alpha-Gal shouldn't keep any person from living a healthy, socially-balanced life.