No one should ever listen to me when I talk about medical things. Got that? NEVER!
I probably wrote that I thought I was over alpha gal because I can eat anything I want to eat without having the itching, hives and breathing issues. My doctor here would not order a test, which costs $149 if I self-pay so I'm not real sure why she refused to do it. I haven't been tested since probably 2013 - 2014. I was so sure I was over it. So, so sure!
Vince always tells me I live my life through rose colored glasses and apparently, he's right. I was thinking to myself that the CDC would probably be calling me to see how I had cured myself of alpha-gal. That's not going to happen.
I asked our doctor that we use through a subscription to order the test and he did. I had the test last week, got the results back within a few days and my alpha gal numbers have actually gone up - not down. When I opened the email and read those numbers, I actually cried. I was so disappointed.
This morning I saw a new doctor who will be my PCP - hopefully for the rest of my days. She's younger - probably a few years less than 40. I know this because I mentioned someone and they had graduated high school together.
I handed the new doctor my test results. She looked at them and said "Your numbers are high! I've never had anyone with numbers this high." Of course, the tears came rolling down again. I'm just being a baby because I know my problems are few. This is not life threatening so long as I keep my new epi-pen handy. When I think of medical problems suffered by many, I know I'm one of the lucky ones .. this is a problem that can so easily be controlled - I'm just disappointed that I allowed myself to be convinced that I was over it - kinda unrealistic but . . those rose colored glasses cause me to do/think crazy things! :)
My numbers may be the highest she has seen but they could be a lot higher BUT, the numbers that show my "allergy level" don't have anything to do with how likely I am to react. I read that someone whose numbers are .4 may be more likely to react than someone whose numbers are 90. It's just crazy. There's an allergist a bit south of here who is supposed to be knowledgeable but I'm not sure what they can do other than tell me to not to eat beef, pork or lamb.
OK . . enough of me feeling sorry for myself.
I had never heard of this condition until you mentioned it a few years ago. I'm a retired medical transcriptionist so I was surprised to hear of it then. Nowadays, it seems if I read anything medical or if folks write in blogs or health columns, alpha-gal comes up frequently. So sorry your numbers went higher and upset you, but like you said, you don't seem to be fighting this issue frequently. Maybe the new nasal allergy spray would be helpful if you find it hard to give yourself shots. You do seem to do well with avoiding the antagonist meats now that you know what they do and that's probably 90% of the battle.
ReplyDeleteI'm ok with the shots but so far, I've been able to make it to the ER without having to give myself a shot. The GoodRx price on the epi-pens is about $200 and the GoodRx price for Neffy is about $400. They're even more if I use insurance! Crazy.
DeleteSo sorry your numbers went up. It is understandable that you'd be upset - I think when we feel that "something" is over and find out it's not, it's very disappointing. Glad you have a new doctor that you feel comfortable with. Wishing you all the best.
ReplyDeleteJudy, I'm so sorry your numbers have gone up. I know how you feel with this Alpha Gal syndrome. I remember when you first started having reactions and no one had any idea what it was. Can you believe that now we both have this and our reactions are about the same? And that it came from a tiny tick?! It's crazy! My allergist told me a couple weeks ago that there was no reason to check my numbers. He said it was too soon. I'm just curious if they have changed since diagnosis in July 2025. Hang in there, I'm right there with you!!
ReplyDeleteI'm very sorry for you but have appreciated being able to follow your journey. I went from about 2012 - 2014 without re-testing my numbers. It seems the numbers don't even mean much . . if you have it, you have it and since the numbers don't give you any indication of how likely you are to react, I probably won't test again . . unless you talk me into trying acupuncture or something and I want to see if I'm over it. But, that didn't work out so well for me this time! :)
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ReplyDeleteJudy, you see I haven't tried anything else! I'm afraid anything might make my symptoms worse! That would be my luck!
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