The Crazy Allergy

Because some are asking questions about the alpha gal allergy, I’ll do a brief history of my dealing with it here. Many of you have followed my path through the years so you might want to just skip over this. For those wanting more info, google “alpha gal allergy” and you’ll get lots of info.

We lived in western Kentucky from 1997 til 2007 and ticks were terrible there. I think we all had several tick bites there, despite being very careful. We lived in the country and we could literally walk from the house to the car, never get on the grass, and still get a tick or two on us.

I believe the first time I went to the ER was either in 2000 or 2001. At that time, the allergy had not even been reported as a “thing”. The first time it happened, Vince was out of town. Chad and I had gone to town and had a burger and shake for lunch. During the late afternoon, I had been out working in the yard. It was after dark but not terribly late, I began itching and it kept getting worse and I began to get hives and when I felt my tongue getting “thick”, I knew it was time to go to the E.R. Chad knew how to drive but didn’t have his license yet so I asked him to go with me to the E.R. in case. He did. Of course, the doctors knew nothing about the alpha gal at the time but they treated it like they would a normal reaction of that type and sent me home.

It ended up happening two more times while we lived in Kentucky. The doctors were all sure it wasn’t something I was eating because it always happened about 8 – 10 hours after I ate and food allergies are usually immediate. I was given an Rx for an epi-pen and just lived with it.

We moved to MO in 2007 and I had it happen twice there. I had a very nice and caring doctor and we talked at length about it simply because it had happened so much. He didn’t feel like it was food related but told me as soon as I felt it coming on, to take a Benadryl and a cold shower.

After getting his advice, it happened one more time but I was visiting a friend in Louisiana. She and I had gone to dinner. As we were leaving, I started itching. We went back to her house. I told her I needed to go run some cold water over my hands because my itching generally starts with my hands, then goes up my arms to my chest area and by then, it’s on my feet and legs. I could see I was losing the battle and she didn’t live far from the hospital. Her granddaughter was with us so I said . . I’m fine – you stay here, I’m going to the E.R. That was the last time I had to go to the E.R. for it and that was on July 15, 2009. I know the date because (1) I didn’t have my insurance card with me and had to call Vince. I tried to call him; couldn’t get him, called Chad to see where Vince was and he explained to me that something had happened and Vince had to go in to work and he wasn’t going to be able to call me back for a while. So Chad sent me a copy of his insurance card and that worked since we had the same insurance and (2) July 15 is the date my nephew was killed in a car accident. My cell phone wouldn’t work in the E.R. so the nurse called my parents. I had to explain the whole situation to her so she would be sure to tell them I was really ok but they needed to come and get me. I knew getting a call from the E.R. would cause them to panic on that day.

Up to this point I still had no idea of the correlation with the tick bite and apparently neither did any of the E.R. doctors I had seen.

So . . we moved to Texas in 2011 and in about 2012 a neighbor had a cow butchered and gave us some of the ground beef. He said “I don’t know why the butcher put so much fat in this ground beef but it makes excellent burgers.” Vince grilled a burger, we ate it about 2 p.m. About midnight, I woke up itching and knew exactly what it was. I got up, took a Benadryl and a cold shower and sat, awake, waiting for it to pass before I was comfortable going to sleep. I thought . . it had to be something with the hamburger and then I remembered – the time it happened with my friend in Louisiana, I thought it was something at the restaurant but my parents and I had eaten a burger at our favorite greasy hamburger place at lunch that day. In Nevada, MO, both times I ended up in the E.R, we had eaten burgers at the local hamburger place. In Kentucky, I could only remember eating a burger once but my guess is, the other two times I had also.

When it happened in Texas, I googled something like “hamburger, hives, itching” and the alpha gal stories popped up. Dr. Platts-Mills is the doctor who discovered it and the first time it was reported was in 2002. I found an email address and by now, it was about 2 a.m. I sent him an email and said “I think I have it!” He wrote me back and we corresponded back and forth the rest of the night. Oh, how I wish I had saved all those emails.

I was able to be tested and got confirmation that I do have the tick bite disease, alpha gal.

As I said last night, there are people who have it way worse than I do. They have not been able to eat butter, drink milk, eat gelatin or anything made with beef broth. Some are allergic to everything mammal related – pork, lamb, beef, etc. I’m lucky mine isn’t worse than it is.

Last night I did a search for meds that contain beef products and most thyroid meds do and I’m taking those so I need to talk to my doctor about it.

Again, my case could be a whole lot worse. It’s definitely an interesting allergy and one I wish I didn’t have but I’m glad it’s me and not Vince or Chad. I think it’s easier for me to deal with it than it would be for either of them. All three of us had our share of tick bites in Kentucky.

I’ll close this with a funny story. Again, Vince was out of town and I found two ticks in my hair on the back of my head – maybe what started all of this. I had to get Chad to help me get them out and I told him “Pay attention to where they are and let’s watch and make sure there’s no bulls eye or signs of infection.” He insisted we use a Sharpie and draw a circle around where the bites were. Every morning he would check them and if the circle was fading, Chad would re-draw it. Now that I think about it, drawing on my head with a Sharpie may have been more dangerous than the tick bites. 🙂