i think when the cdc talks about post-lyme syndrome, they are saying there is no active infection and instead there are auto-immune things happening...they are wrong on the first point, in my opinion, but right about the auto immune stuff....pots, mcas, dysautonomia are all auto immune types of things...if you can get rid of infections then maybe/probably it will resolve...however the brain is stuck in an inflammation pattern, and i wonder if just an absence of bugs will cause it to stop over firing....ive been doing tests on triggers for me, and i now see that i get mcas issues from harmless things like vitamin c....
I agree the whole post lyme thing is a complicated soup. We all agree here that active infection after CDC treatment is real but even after effective treatment there seems to be a whole host of things that need to be addressed, healed, corrected. It’s one of the things I’m still finding hard to figure out. I think I still have some active infection but not nearly as much and I feel like I’m dealing more with things in the ‘other’ category.
I didn’t realize until recently that POTS was related to MCAS - I’ve had that my whole adult life so I don’t know yet how that ties in to my susceptibility to things in the first place.
And yikes! I read vitamin C was supposed to help. Tracking down triggers is so much work. I’m starting to think seriously about
looking into the allergen/sensitivity testing Astroman had done soon.
I’ve had mild POTS my whole life too! Then there’s all the sensitivities, skin stuff, bladder issues, nerve & heart stuff. I had to stop hot baths because they flare my bladder. I have had allergy testing and I’m allergic to almost all high histamine foods. I think I’m going to try low histamine diet and see if it helps further. It seems like there could be a genetic piece to this too.