Julie G wrote:What are your continuing MCAS symptoms if you don't take the antihistamines?
Hi Circ! No, I've never tried mast cell stabilizers and probably should. As you might recall, Rudy Tanzi found that another mast cell stabilzer, sodium cromolyn stabilized abeta "in a dish" and prevented tau tangles. So, your recommendation is a good one, especially given our focus.
Yes I do recall that. After that news came out I tried using NasalCrom spray but it dried out my sinuses too much to continue with. Maybe I should use it along with some nasal aloe spray first, but they might just stick together and do nothing.
Julie G wrote:
Is ketotifen the only MCAS med you take? Who prescribes it for you? Has it halted symptoms? FWIW, if I don't take my zyrtec and singulair, I get very traditional allergy and asthma symptoms, running nose, post nasal drip, and chest tightness.
Actually I haven't taken any MCAS meds for a very long time. I think after I addressed the MARCoNS to the extent possible everything calmed down. Oh ya, and my repeating eczema went away about them too. I read that staph can cause eczema, and since I had staph colonization in my sinuses it made sense that might be the cause of my eczema too, so I switched to use only Mother Dirt shampoo in the shower, nothing else, and avoid body products with preservatives that kill the healthy skin biome. This seemed to stop the eczema in its tracks.
But I do now I still have some MCAS that can be triggered. For example on Thanksgiving I had two blue corn tamales with corn and squash inside -- a lectin nightmare -- that I pressure cooked, fantasizing it would kill any lectins
. Within half and hour my legs and belly were flushed from histamine.
I got my internist at the time to prescribe the ketotifen (!) through a local compounder that billed my insurance (!). They were capsules.
Julie G wrote:
Izzie's links have taken me down some interesting rabbit holes. I recall several allergy skin tests where I didn't react to histamine (despite no antihistamines onboard and loads of symptoms) leading me to wonder if my symptoms are modulated by a different mechanism, like cell mediated immunity. I'm also negative for all allergy testing. Bizarre.
Do you mean that you didn't react to histamine or that you didn't have a histamine reaction to allergens?
Hmmm, assuming no histamine after allergen exposure, or even no reaction to histamine itself (?), I don't think of this as bizarre at all, but rather the very description of non-allergic mast cell activation, where perhaps your mast cells are spewing others of the over 200 non-histamine chemicals they can release? Maybe I'm missing something there.
I think focusing on mast cell stabilization is the way to go if possible? Another thing you can try is Dr. Theoharides' NeuroProtek? Some people are sensitive to it and others not. There's a low or no polyphenol version some use.
I also find salicylate overload mimics or causes MCAS in me, which includes avocados, olives and blueberries! But lately I'm also tolerating salicylates much better! I have been amazed to be spicing my morning coffee with cardamom, cinnamon and ginger without issues! Cinnamon was always been horrible for me during my CFS/MCAS years.
All that said, this weekend I've filled my bucket a bit much and need to get strict and back to where I was before it.