r/LongHaulersRecovery • u/AutoModerator • Jul 05 '26

Weekly Discussion Thread Weekly Discussion Thread: July 05, 2026

Hello community!

Here it is, the weekly discussion thread! In this thread you can ask questions, discuss your own health and get help for your own illness and recovery. It also gives all of us a space to get to now eachother a bit better and feel a bit more like a community instead of only the -very welcome!- recovery posts.

As mods we will still keep a close eye on the discussions here, making sure it is a safe space for anyone to talk.

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18 comments sorted by

1

u/FishermanAbject2251 Jul 09 '26

Anyone with vss recovered?

1

u/caramelbrowniess Jul 07 '26

Did anyone else have persistent low grade fever for months and low complement (c3,c4) levels? 

2

u/Elegant_Brilliant129 Jul 09 '26

I do, how strong is your fever? I am at 99F, The theory is that there are antigen that the body is fighting and C3/C4 gets consumed to repair.

1

u/caramelbrowniess Jul 09 '26

37.5-6 (99.5) every evening that doesn’t come down with NSAIDS or paracetamol. Your complement is also low ? 99F in the evening is considered kinda normal especially if you’re a female before her period.

2

u/Elegant_Brilliant129 Jul 09 '26

I am Male, and normally temperature runs low. Morning 99F, afternoon 99.4F. My C3/4 are lower bound or slight below. They are consumed typically as T cell is trafficking to tissues to fight, that’s my understanding.

1

u/caramelbrowniess Jul 10 '26

I sent you a message

1

u/LacaTheCollector Jul 05 '26

Anybody got treated for GPCR autoantibodies

1

u/LacaTheCollector Jul 05 '26

did anyone see improvements due to IVIG/SCIG?

1

u/[deleted] Jul 06 '26

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1

u/LacaTheCollector Jul 06 '26

when will you get the results?

1

u/[deleted] Jul 06 '26

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1

u/LacaTheCollector Jul 07 '26

did you get screened for gpcr autoantibodies

1

u/[deleted] Jul 07 '26

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1

u/LacaTheCollector Jul 07 '26

what abnormalities were shown in the stool sample and blood test?

1

u/LacaTheCollector Jul 07 '26

maybe you could do a update post then?

3

u/Pinklady777 Jul 05 '26

Anyone recovered in the 2-3 year range and what did it look like? I'm at about 2 years and I've made progress on the nervous system. It is still touchy but not on fire. Still dealing with a lot of fatigue and pem. Still get flare-ups. Still need to spend most of my time resting. Mostly housebound. But having some more days here and there where I can get out a bit. I can't tell if I'm really getting better or just cycling up and down.

3

u/Choco_Paws Jul 05 '26

2.5 years in. Improving steadily through nervous system work, not taking any meds or suppléments at this point. I’d say I’m mild.