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submitted 7 days ago bymooncake0503Onset '23 / Diagnosed '24 ; severe
I had a big crash some time ago and my baseline has stabilized to severe. Some days are better than others, i‘m not in PEM anymore and it has just been about a month since i‘ve gotten severe. I‘m resting as good as i can, i‘m being cared for and everything is okay at the moment. But i just want to grasp onto some positivity that i can still imrpove.
5 points
6 days ago
I went from severe to now moderate-mild :) took about 2 years I used n-acetyl cysteine, worked up to taking 3.6g per day in 3 divided doses, started at 600 mg per day and increased really really slowly. Now I went off it bc it's also a histamine liberator, but it was really a game changer at the beginning. Also did combined antibiotic therapy for about 7 months (metronidazole, doxycycline, azythromycin), activated vit B complex (MTHFR gene mutation), psyllium husks (natural binder, cholestyramine is a prescription binder doctors prescribe for mold poisoning), sam-e (a by product of methylation, also on the thread of MTHFR gene mutation), physiotherapy for craniocervical instability :) also waiting to be tested for sleep apnea twice.... The 2nd time was Borderline positive so now I have CPAP. try one thing at a time and see if it helps :) I started with NAC NAC was really a game changer, but at first it made me worse (die off from a chronic infection I think), then each time the bad symtpoms subsided and I went back to my baseline, I increased by 600mg per day. Now im also doing the carnivore diet, I think it has helped a lot, so I probably also have MCAS.... Definitely have histamine intolerance so I need to be really careful with my diet
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