How New Ticks Bites Impacted Us

People with Alpha-gal Syndrome Describe What Happened When Ticks Bit Them Again

I have fume reactions all the time. 

1. My first fume reaction was a week after additional lone star tick bites. I was cooking beef gravy at work. My throat began to close and tickle, and I had shortness of breath and nausea. It was a mild airborne reaction, but the beginning of many to come. It is also when the smell of heated beef, pork, or dairy was no longer appealing, and it felt like I had a new superpower of smell. I could smell alpha-gal allergen offenders much more strongly from here on, and even in and household and bathing products.

2. While driving near Cook-Out or Burger King as their smoke billows out, my throat tickles and I cough in my closed up car. One time I was riding with others and we stopped at a light. I felt the tickle and shortness of breath. I asked if there was a burger place nearby. Everyone looked around and found one behind us.

3. The most serious fume reaction I’ve had was to my apartment neighbor’s grill. My dog needed to go outside, so I had to walk through the grill smoke, once on the way out, and on the way back in. Shortly after, he needed to go back outside, so I walked back through it twice more. I became very dizzy and fatigued, and also very weak. I lied down on the couch. I could not keep myself awake. I passed out. My dog woke me up later by barking and growling at me, which he never does. I knew something wasn’t right. No one else was home with me. I picked up my phone and wondered if I should call for help, but I was so weak no words would come out when I tried to speak to my dog, so I gave up and I dropped the phone back on the table. I could not focus or concentrate to dial for help. It was no use. I was too weak to get an epi-pen. My mind was also not thinking straight and I gave in to the worst that could happen, and accepted it, and fell back asleep/passed out again. Only later did I realize how serious this could have been.

4. I was at work and someone brought in fresh food with still steaming ground beef. They needed to talk to me, but meanwhile the smell of the hot beef was beginning to affect me. I began slurring, then losing balance and stumbling, then talking unnecessarily much, but with some confusion. I noticed my coordination was off. I felt a tingle on the top of my head, which is strangely my personal warning that my symptoms will progress. I was exposed for maybe 15 minutes total before I left. Driving home I noticed my cheeks became tight, eyes watering, a migraine starting, shortness of breath and cough, and my depth perception was hindered. I also began to feel nauseated, lightheaded, and weak. I felt some paranoia and panic setting in which I could not control. I knew it was the histamine increase and the way my body responds. I needed to get home safely, but I was so afraid it was too late. It took all I had to make it home safely. Looking back, I should not have been driving. The entire day following I was fatigued with aches and a migraine, and had to minimize my activities at work.

5. I volunteer at the animal shelter. Everytime I leave, after only being there an hour, I feel a thick tickle in my throat and shortness of breath. Sometimes my cheeks turn red. Up to 24 hours later I have symptoms related to this exposure, mostly consisting of migraines and extreme fatigue and aches.

Crystal J. Norton

My first symptoms (in retrospect) was heartburn and a feeling like there was a lump in my throat. I also was feeling warmth under my arm that I couldn’t explain. It was in january 2020, so it must have been awhile since my tick bite. Where I live there are ticks everywhere, and I’ve been bitten a lot. I looked up heartburn and followed recommendations: reduce acidic foods, don’t eat for 3 or 3 hours before going to sleep, and sleeping propped up with a few pillows. That seemed to help. In the early summer, I broke out in absolutely horrible hives. They were like blisters, and so itchy I couldn’t sleep. They lasted for weeks. A few months later, the same terrible outbreak of hives. lasted a few weeks, then disappeared. Less than a month after them clearing up, they came back. I was concerned, but it honestly didn’t occur to me to go to a doctor, as I’m the kind of person that never gets sick. Things were good until last spring where I went on a hike and found a tick stuck to me. I was starting to get migraines more and more often. and was getting terrible heartburn – bad enough to make me think I might be having a heart attack. Sometimes I would break out in hives after taking a shower, somestimes after eating at a restaurant. I had another really bad bought with hives. I was researching as much as I could on the internet, but I had not connected the dots to the ticks. Then i had a reaction where my lips swelled up and my tongue was tinglling. I knew something was really wrong, so I went to the immediate care. They gave me a shot of prednisone, watched me for a bit until they could see the swelling went down, and then sent me home with prednisone pills. That seemed to help, but the day after I finished the prednisone, my lips swelled up again and so I went back to the immediate care. They gave me a double dose of prednisone and gave me a referral to an allergist. When I got to the allergist, he listened to my symptoms and pretty much guessed right off that bat that is was alpha-gal. I was tested and came back positive. I don’t believe I have had any more tick bites, and my symptoms have more or less stabilized, but I have to avoid all mammal meat, by products, and dairy.
Susan R

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