I feel you. I was a personal trainer prior to this and haven't been able to as much as walk up a flight of stairs for 7 years without suffering long term brain damage. Fatigue isn't a problem for me, this whole disease is in my brain
I also react to the sun. Early mornings and late evenings are best and i try to get as much sun as i can during those times because it's healthy for us. However, between 10am and 3pm when the sun is strongest my dissociation is out of this world. I lose my ability to see color, rampantly hallucinate and get overflown with incessant, paranoid delusions.
My doc had me start with 2 antihistamines- xyzal, an H1 blocker and Famatodine, an H2 blocker. They don't do much but the xyzal reduces my reactions to food a bit. Obviously i employed a low histamine diet. He also wanted me to start up methylation treatment again- i had done it for over a year with no results but because of my snp's he wants me back on it
What has shown a slight bit of promise has been inositol. I researched mast cell stabalizers from Stephen Buhner and he mentions butterbur and inositol. The butterbur didn't do anything for me but the inositol takes a bit of the edge off. I'm highly sensitive to heat and humidity and if i take inositol during it, my reactions will decline slightly. These things haven't helped my baseline at all but they make my lows a little less low.
My dr. seems to believe that I'm a more severe mast cell sufferer so he is considering switching me onto dexamethasone, ritalin and another med i forgot. He said those are potent mast cell stabalizers. Of course I'm still on bartonella treatment but that hasn't shown any promise as of this point
Would the dexamethasone be low dose? Otherwise it can lower your immune function.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi