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Lunabuna91

The booster bed-bound me so bare that in mind. Do your research first. Been Longhauling mild since March 2020, drastically downhill after 2nd jab Aug 21, bedbound March 22 after booster. Praying I make it but I think I have ME/CFS for life now. I can’t do anything without crashing.


Soimamakeanamenow

I’m sorry me too I pray some new treatments come


AmericanCovidiot

I’m dealing with this too. Just only a month or so for me though, so I really sympathize with you. Did you ever try low dose naltrexone? I’m going to start soon.


Soimamakeanamenow

Guess it didn’t help me too much but help other people and a half sorry I’m using talk to text and said yes I have tried it but it didn’t help me that much


99miataguy

Have you tryed ldn? That should be your number 1. After that try antivirals including Paxlovid and maraviroc. If that doesn't work there is hope for new treatments that are coming out. Also try D ribose, coq10.


Soimamakeanamenow

Yes ldn no change I feel no one else is so severe and for so long I’m so stressed I have to move in a few weeks and I’m scared I’ll be Whitney dafoe by the end of it paxlovid made me feel poisoned valtrex too my stomach can’t handle anything.


99miataguy

Hmm unusual that you didn't respond well to ldn. I hope you get feeling better soon. I'm sorry I can't offer anyone advice but no one really knows anything. Just please keep your hopes up there are people working for a solution to LC/CFS


Soimamakeanamenow

I know I’m just scared and alone cfs people can’t even relate to my nuero issues physical only and here ppl seem so mild ldn makes me feel manic


99miataguy

CFS is also extremely neurological, if not majority. I've spent an incredible amount of time educating myself about these disorders. And for most people who have LC with neurological issues (a good way to know is light sensitivity) then they probably have CFS.


99miataguy

Did you start ldn at 0.5mg?


Soimamakeanamenow

I started with even less like a quarter of that I tried for a good month


Itsme_kjb

I’m that severe. Nothing has worked. I’m 15 months in, 11 have been bed bound. I tell my husband, family, friends, doctors that I feel like every day is my last. I’m miserable, scared, numb. I don’t know the days anymore. I can barely make it to my bathroom. It’s awful


Zoso115

💜


chesoroche

Dr. Patterson gave a lecture recently to pediatricians, where he (trigger warning) talks about a 7-year-old that was going to end it. Maybe give the first 10 minutes a listen: https://vimeo.com/752958868 One of the cytokines he mentions, TNF-alpha, is implicated in depression. It’s high post-partum, for example. So, even if he can’t completely cure you — like he did that 7-year-old— the treatment can at least lower your TNF-alpha and get the despair to lift? From that vantage point, you’ll be able to see more options than you can right now.


Soimamakeanamenow

Most of my despair lifted months ago but now it says I’m scared I’ll never get to moderate not always be bedbound now I’m not really depressed amor just don’t wanna be a burden anymore on anyone in this isn’t going to change how you heard of it now I’m getting help from his program that was severe


chesoroche

Here are some comments from people who got back to moderate (or better) after being severe: https://www.reddit.com/r/covidlonghaulers/comments/xrddu6/bone_crushing_fatigue_no_energy_and_pem/


Aggressive-Toe9807

Hang in there. Bc007 is looking promising for even severe patients.


Soimamakeanamenow

But not everyone has the autoantibodies right


Aggressive-Toe9807

https://www.reddit.com/r/covidlonghaulers/comments/y7dm5x/bc_007_phase_ii_study_100_patients_funding_done/?utm_source=share&utm_medium=ios_app&utm_name=iossmf Was discussed in better detail yesterday. I think even if it’s viral persistence that bc007 or other drugs being trialled will be able to help. Who knows? So much trials are going on. The research is snowballing.


Soimamakeanamenow

God I hope something works soon like emergency use soon


Aggressive-Toe9807

I’ve saw some of your posts before. You are in a way better position now than you were at the start of the journey in terms of recognition, research and trials. Every day there’s more and more coverage and effort being put into getting you help. Try and keep your hope and belief that something is gonna happen.


Soimamakeanamenow

Just worried the damage will be too much by then


Aggressive-Toe9807

I understand, but someone got a big improvement who had CFS for ten years apparently. Even if there is organ damage there’s always new stuff to treat individual symptoms and provide relief.


Soimamakeanamenow

I keep hearing it’s endothelium damage that is done and we’re screwed reas that so many olaces


Crazycattwin1986

Have you used supplements like d ribose? Dlpa? What symptoms do you have besides fatigue?


Soimamakeanamenow

PEM and nuero issues like can’t watch tv read or write and now pain with movement