Has anyone tried some form of antiviral cocktail regimen for their LC?

Posted by repl @repl, Jan 27 1:29pm

I’ve done a fair amount of research on chronic fatigue/post viral conditions, which is what long covid is. In these conditions, it has been found that viruses stay under the radar active creating all kinds of symptoms and disabilities and autoimmune conditions.

I’ve found some lessening of my symptoms with long term Paxlovid use. But I’m wondering if there’s even more antimicrobials/antivirals being tried and mixtures of things?
It seems most medicine is focused on the downstream symptom management but not the upstream cause of — let’s frickin kill this virus!!

I’ve read research that covid infects bacteria, gut bacteria too, so it could be a gut virus like Epstein Barr Virus that stays in your system causing LC.
Thinking maybe some type of antibiotic antimicrobials with antivirals cocktail might be a cure…

Similar to Lymes disease and TB where strong long term doses of antibiotics are used, I believe there could be a cure if the right concoction is discovered to clear the virus out.

I also think it’s short sighted that chronic fatigue syndrome isn’t formally recognized as a post viral condition that treatment can kill. And I think this short sightedness is causing many of us to feel left behind, hopeless and without answers because it’s causing a blind spot of not pushing to find this cocktail. The focus has been on the acute condition.

So back to my question, has anyone worked or tried some type of cocktail?

Interested in more discussions like this? Go to the Post-COVID Recovery & COVID-19 Support Group.

repl | @repl | Feb 5 11:36am

In reply to @repl "You’re welcome! I’ve actually been on it for 5 months at the half dose. I’m off..." + (show)

@repl

You’re welcome!
I’ve actually been on it for 5 months at the half dose. I’m off of it for 5 days now to see how my symptoms are doing without it.

I started with the 5 days and felt a difference, then was off of it for 2 weeks before convincing my doc to prescribe more as off label because I noticed within about a day to 2 days off my swelling in my body returned, my head would start to fog up again, and my whole body fatigue would come back, along with palpitations.

What I noticed when I took paxlovid, is I could feel when the meds kicked in about an hour or 2 after taking it, all of a sudden my energy would improve and my mind would clear, it was like I was lifted out of this horrible place of weakness, fog and sickness and into healing and feeling awake and alive again.

It gave me hope. Hope that with enough time of using it that maybe it could permanently change my body back into health and functioning again.

My doctor was pretty nervous about me taking it longer than approved for, so asked me to try taking as little to none as possible. I tried over the first 2-3 months of going off of it for a day a few times (as well as had difficulty getting the pharmacist to dispense more so had some gaps), and would notice my swelling immediately start returning with less energy. Then I’d go back on it the next day and my swelling would visibly shrink again. My husband definitely noticed these changes too. During a few times of not being able to get it filled due to pharmacy issues, I tried just taking the Nirmatrelvir by itself but didn’t notice any difference. It seems I had to take both Ritonavir and Nirmatrelvir to notice significant differences.

These past few weeks, I noticed my symptoms plateaued with no real improvements or changes with being on Paxlovid, or questioning if it was still working. So I’ve been off of it for 5 days now without having the fog descend and weakness take over again. My swelling hasn’t increased either so I’m grateful. I’m not gonna say Paxlovid is the cure all. I’m still at 60% of physical functioning but was at 0-5% (I was bed and couch bound). Now I have about 3 hours of being able to perform light tasks, then gotta rest on the couch, but my mind is back! I’d say my mind is back to 90% functional.

So my conclusion is Paxlovid helped me get my mind and energy back. And hopefully with more time my physical functioning will improve and maybe another few rounds of Paxlovid after a break will help or some other regime of antiviral cocktail 🙏🏻

What did you find was helpful going through the Mayo Clinic program?

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For clarification, my thoughts are that if someone tries Paxlovid for a 5 day trail and it helps with symptoms, then maybe long term use might be effective