u/molecularmimicry

▲ 21 r/cfs

Has anyone not found a single treatment that works? 6 years ill, severe and hopeless

Sick with long covid/ME and POTS.

I’ve tried nearly all of the treatments that have been popular in the ME/LC community and support group I’m in. I’ve tried aspirin, beta blockers, fasting, keto, gluten/dairy free diet, low histamine diet, nicotine patches, IVIG (for 9 months), gabapentin, Lyrica, ketamine, antihistamines, LDN, ketotifen, GLP1s, baricitinib, Mestinon, ivermectin (yeah, I know), cromolyn, etc. probably forgetting a bunch but you get the idea.

You name it, I’ve tried it (unless it was too high risk). A handful of them helped marginally for a week or two but then I’d go back to my severe baseline.

I’m now incredibly discouraged and burned out. I continue to get sicker and sicker over the years - was mild for 2-3 years, then took a bivalent booster and that really accelerated my decline. I’ve been disabled/unable to work since 2023.

I know I shouldn’t feel this way and I’m happy for everyone who’s found relief but whenever I read about someone finding something that helped them, I can’t help but feel even more discouraged.

It’s like I’ve put all this effort and research and endured side effects (some really nasty ones with IVIG) and have nothing to show for it.

What else is there to do when nothing works?!

reddit.com
u/molecularmimicry — 7 hours ago

Has anyone else NOT found a single treatment that works? 6 years ill, severe and hopeless

I’ve tried nearly all of the treatments that have been popular in the LC community and support group I’m in. I’ve tried aspirin, beta blockers, fasting, keto, gluten/dairy free diet, low histamine diet, nicotine patches, IVIG (for 9 months), gabapentin, Lyrica, ketamine, antihistamines, LDN, ketotifen, GLP1s, ivermectin (yeah, I know), cromolyn, etc. probably forgetting a bunch.

You name it, I’ve tried it (unless it was too high risk).

I’m now incredibly discouraged and burned out. I continue to get sicker and sicker over the years - was mild for 2-3 years, then took a bivalent booster and that really accelerated my decline. I’ve been disabled/unable to work since 2023.

I know I shouldn’t feel this way and I’m happy for everyone who’s found relief but whenever I read about someone finding something that helped them, I can’t help but feel even more discouraged.

It’s like I’ve put all this effort and research and endured side effects (some really nasty ones with IVIG) and have nothing to show for it.

What else is there to do when nothing works?!

reddit.com
u/molecularmimicry — 7 hours ago
▲ 66 r/neopets

The koi cap might be my favorite pet day cap of all time - the koi outfit is exquisite 😍

u/molecularmimicry — 1 month ago
▲ 131 r/neopets

Achieve my goal of a cute 4L - had the most fun making her custom. Meet Fahe! :3

She's my pride and joy ;_; When I got back to pet trading, one of my goals was a pretty, fem 4L. I thought it'd take a long time to get there but sometimes things just line up. Super stoked about her n_n

u/molecularmimicry — 2 months ago
▲ 83 r/neopets

My little ethereal kitty kat 💫 ☁️

Just got this pet - Piur ("pure") through a trade and quite happy with how the custom turned out ^_^ The faceless pet thing is growing on me.

u/molecularmimicry — 2 months ago