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I was diagnosed by my very careful and thoughtful nurse in Cleveland at the VA hospital while going through treatments for cancer and a few other health issues. In conversation with her one Friday afternoon, I described an episode I had in June 2017. It was early August. The next morning, she called me at 8 and said she had an idea what caused the reaction that sent me to the ER. She told me to stop eating red meat. By Monday morning she had put together a display board with the path from the bite to the reactions I was having.
She sent my blood to the Mayo Clinic, evidently at the time the only lab in the US capable of correctly diagnosing the disease. It came back positive with levels that were 100’s of times higher than normal.
I ended up going through every allergy test they could put me through. Multiple physical exams by doctors from the VA and other hospitals. I was finally verified by physical exam by the head of epidemiology and vetted as authentic. He searched me for needle marks to verify I wasn’t a drug user.
I was the star of the epidemiology conference that December in Cleveland and was interviewed by a few dozen attendees. They all just wanted to witness a reaction as it was ongoing. Morbid scientific curiosity.
Early this year I had 7 episodes from the first Saturday in February to the last one on April 10 th. My sensitivity is off the charts. The triggers for me are no longer red meat and dairy products and gelatin. A simple sunburn can cause issues. I now can be triggered by nonspecific Alpha-Gal triggers.
The first episode came about 15 minutes after having my morning protein shake which has 8 ingredients that I’ve been using for five years. Very safe stuff. That morning, I added a new bulk supplement that I thought would be useful. N-Acetyl L-Cysteine (NAC) which is considered excellent for liver health, immune system support, and reducing inflammation. I had a reaction that sent me rushing to the ER.
Not even thinking the NAC was the culprit, I took it three days in a row. I didn’t have a full-blown reaction again but kept having issues. I stopped taking it and it took almost two weeks before I felt normal again.
The next two were both relatively mild and I dealt with them using my typical self-administered treatment of 7 to 10 Benadryl gel caps along with rhythmic pacing and breathing. Sometimes gasping. I do not know what caused them. They were both about a week apart and approximately 8:30 in the morning.
The next two episodes occurred in one day 11 hours apart. Both of those sent me to the ER. I had been looking for a morning snack that had good protein and nutrition. I decided to try Greek yogurt and cottage cheese. I researched both before trying them. I knew the cottage cheese might be a marginal one, but quality cottage cheese is typically free from bovine contaminants and should be safe. But once again, I was wrong. 10 minutes after eating ¼ cup I was on my way to the ER after downing 5 Benadryl so I could drive without shaking too much. That was at 7 in the morning.
That evening, I took a friend to dinner at a very Alpha-Gal safe restaurant. They know me and have a cook that has AGS. Dinner hadn’t even arrived before I started feeling the beginning of another attack. We quickly took our order to go. I dropped my date off at home and drove straight to the ER. By the time I got there I was getting pretty scary looking with all the welts.
That day I spent in total 7 ½ hours in the ER. I had two different doctors. The one in the morning gave me a prescription for something I couldn’t take because it had adverse reactions to one of the supplements I take every morning in my protein shake. The evening doc also gave me a prescription. It was totally different than the morning doctors. This is an ER that knows me well. Probably been their dozens of times since 2005.
The second episode that day was probably caused by fumes in the air from the kitchen. I most likely was so sensitized from the morning episode I was triggered by steaks being grilled. I’m not sure but I think that was the first time that happened. I’m normally pretty tolerant with that exposure.
The next episode was at 8:15 PM on April 2nd, 2025. It was a bad one, but I absolutely did not want to spend four hours in the ER. I OD’d on Benadryl. Twelve gel caps, constant motion of pacing, rhythmic breathing (much gasping), and 2½ hours later I was exhausted but it was winding down. The next day was just slow-motion recovery from the Benadryl and exhaustion.
The final episode was the following week on April 9th . Again, it followed the same order. I had dinner at 7:30. Dinner was a boneless, skinless chicken breast with a ¼ cup of basmati rice and two cups of steamed broccoli. With a little butter, along with small amounts of cheese, are dairy products I can tolerate. But again, about 8:00 PM I started feeling the start of an attack. I immediately got up and started getting ready to go to the ER. Before I left though I wanted to take a couple Benadryl to calm the initial storm so I could handle the 15-minute drive. I was standing in the kitchen trying to open the damn Benadryl, but my hands were shaking so badly I couldn’t get them open. Right in front of me were a couple pairs of scissors and a butcher block set of chef knives. Wisely, I didn’t grab one of those because suddenly, all sense of feeling left me. I remember collapsing but not hitting the floor. I wasn’t out long but by then it was too late. I was in a full-blown attack and no way out. I couldn’t get up to get my phone or get the epi-pen. Fifteen minutes on the floor before I could crawl into the bathroom. What a mess. My blood pressure had dropped so low I was unconscious.
Never went to the ER. By the time I could go, the reaction started to subside. So, what caused those last two reactions, I can only guess. Maybe it was butter, maybe something else. I just don’t know.
Haven’t had a full-blown reaction since but have had ongoing issues almost every day. Mostly skin issues with rashes, continuous itching that just moves randomly from one area to another. I had a doctor’s appointment after that attack, and I suggested that my hypersensitivity might be due to my immune system overreacting. I suggested that the overreaction may have also been the cause of most of the other health issues I had over the previous 15 years. Possibly even the cancers.
She just commented “You’d like to think so.”
On further reflection, was the tanning booth a contributing factor? I started late January for twelve sessions over five weeks.
Or was it the inclusion of MCT oil in my morning protein shake that I also started mid January. Was it the spider bites, or all the other unknown bites I got through that timeframe. I still have the sores from some of them. They don’t heal anymore. Takes months. Or, as I’ve learned from the research, was there a direct correlation between my workouts on Monday, Wednesday, and Friday afternoons and the reactions happening about 3 ½ hours after?
Or, Or, OR! What a shit storm of possibilities.
Was it a combination of multiple factors. Who in the world could sort that mess out.
In search of answers while my health and quality of life slowly deteriorates. For me, frustration breeds action. Especially research. In todays world we have access to an amazing array of information.
Because, after a certain point you just must do something. When it isn’t getting better. And it’s just getting very weary dealing with the daily issues. Sleep is very inconsistent. Focus is no longer strong enough. The disruption is becoming debilitating. Short term effects are now. Long term effects are coming or I’m already experiencing them.
I quit everything. I still have my morning protein shake. Without the NAC, of course. I make Eternal Chicken Soup and have that most evenings for dinner with salmon as an alternate protein. With a little rice and a lot of vegetables. My pantry is protein powder and bulk supplements. And RxBars which also seem
safe.
I have noticed a positive response to taking Cetirizine in the last month. I’ve upped the dose to two tabs a day. I didn’t even know what it did till I started this research, but it was prescribed by my doc during my last visit with her after the last attack. That was a significant clue in my following research. I need to reduce inflammation to break the cycle I’m in.
When you get tested for Alpha-Gal Syndrome you are placed on a scale of 1 to 10 with 10 being the most sensitive. I’m on a scale of my own.
I started to research what potentially happened to my system after those ten weeks. Querying the available AIs on the internet with questions pertaining to my unique situation. I think I’ve found some answers. But without professional evaluation I can’t be sure. It’s a first step to finding a protocol for me to follow that hopefully can stop or reduce the cycle I’m in.
Hopefully, some of my research will be helpful to someone else. Please take a look at the Q&A section (The link below this one in the Hub dropdown menu.)
