Alpha Gal Syndrome Update

 It has been since May 2025 that I was diagnosed with AGS, I will trust to your perspicacity to do that math on that one.  Well, over a year, nearly a year and a half, I guess.  What an up and down journey this has been.

 If you go back to my blog entry on June 22 of this year, it will describe some of my AGS journey as far as the medical happenings this year.  As a follow up I will add that since I have eliminated rosemary extract exposure I have done fairly well.  I am still quite quite sure I have MCAS, mast cell activation syndrome, and/or histamine intolerance due to several different symptoms; including the fume reactions. But the reactions are so different between mammal exposure and high histamine exposure.  Last month I had an accidental exposure to some sort of mammal because after trying a new brand of supposedly ground chicken, which in texture behaved suspiciously like ground turkey, I developed the heart palpitations and tachycardia that I associate with mammal exposure.  I took a couple of extra antihistamines and it settled down fairly quickly.  But I can tell when I have high histamine load because I get super tired, and develop tinnitus.  I realize that tinnitus is also associated with high blood pressure, but I have kept track of my blood pressure during my tinnitus and it isn't high. The tinnitus develops after I eat high histamine foods; salsa, regular tomatoes...etc.  Sometimes it just happens due to environmental triggers, I think; pollen, stress...whatever.  It is hard to figure out.  One thing I know is that I can have a few good days of no tinnitus, and then I think, "gosh, why am I taking so much antihistamine, when I am doing so well?" So I quit taking as much antihistamine, or skip  a dose.  Then pretty soon afterwards, like less than a day, I get a high histamine tinnitus, draggy, episode.  

I am still on the LDN (low dose naltrexone), 3 mg, soon to be 4 mg.  It suppresses the immune system so your reactions are not as bad.  I know it really helps because at one point I ran out of it before my next script arrived and I could tell the difference for sure.  I have been on the 3 mg dose for about months. At my last appointment at 417 Integrative Medical Clinic, the NP who prescribed me the LDN said we could kick it up to 4 MG, since I still have issues with high histamine foods.  I said I would finish the 3 mg script before I go up to the 4.  There are no side effects to the LDN to really speak of, at least that I have experienced.  Vivid dreams have been the worst that I have had, and those can be entertaining.  

That is is for now.  I guess there isn't much point in talking about how isolating this syndrome is, especially when one is fume reactive.  I believe the LDN has really helped with the fume reactivity; at least I can get around the grocery store with a deli without almost passing out.   

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