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

I talked my doctor into trying off label Paxlovid for long term trial because it was really helping me, right away I felt the difference! Within 1-2 days my body and brain would feel the blanket of fog and heaviness tingle with renewed energy and alertness. My heart palpitations seemed to disappear. My full body edema started to decrease to where I could see a few tendons in my hands and feet. My constipation/bloat got better, And my constant dizziness went away…It helped a lot!!

I tried not taking it and I would started swelling and the fog and heaviness would descend within a days time so I’ve been on a half dose, meaning took only 1 nirmatrelvir, not 2 (that’s the smallest dose that I found therapeutic and sustainable). I was on it for 5 months but now I’ve noticed that although my symptoms have improved it’s not as effective as it once was, so I’m trying a few weeks off to see what happens.

The good news is my swelling hasn’t inflated me back to where I used to be, but I still have 40% swelling, my brain hasn’t become clouded over like it used to (no dizziness), and my energy is meh, but it’s been kinda meh for several weeks so hard to tell. Seems anytime I’m fighting off another bug, everything goes waay backwards edema, weakness, heart palps, etc.

I also tried some antibiotics while on it, but that’s cause I had diverticulitis (mild case caught early), it seemed the antibiotics really helped with the antiviral. I felt great for like 2 weeks! Then stated feeling poorly but was fighting off some other virus going around. I tried another round of antibiotics 3 weeks after the first to see if it would work again, but I didn’t see a difference and I think it irritated my GI. However, I was taking cipro/flagyl and maybe another antibiotic like rifaximin might work? Or lower doses?

Jury’s still out on if the long term Paxlovid has permanently lessened my symptoms or just time did that…

I too am trying to find the right concoction of treatment. Never giving up trying because I feel that we are the ones to help find us a cure! Along with our doctors willing to explore outside the box options based on the past as well as what’s being learned through current research. Everything starts with case studies.

I think that it’s possible they may never find a cure for covid…this wouldn’t be the first time this happened, we have many diseases in our lives that we don’t have a cure for, the best we can hope for is medication that help with the symptoms, it’s not a perfect thing but if they can minimize the symptoms then perhaps we can function better in our daily lives. I was told by a specialist that most things like disease and medication have to be in our lives for at least fifty years to see how they truly affect us.

I talked my doctor into trying off label Paxlovid for long term trial because it was really helping me, right away I felt the difference! Within 1-2 days my body and brain would feel the blanket of fog and heaviness tingle with renewed energy and alertness. My heart palpitations seemed to disappear. My full body edema started to decrease to where I could see a few tendons in my hands and feet. My constipation/bloat got better, And my constant dizziness went away…It helped a lot!!

I tried not taking it and I would started swelling and the fog and heaviness would descend within a days time so I’ve been on a half dose, meaning took only 1 nirmatrelvir, not 2 (that’s the smallest dose that I found therapeutic and sustainable). I was on it for 5 months but now I’ve noticed that although my symptoms have improved it’s not as effective as it once was, so I’m trying a few weeks off to see what happens.

The good news is my swelling hasn’t inflated me back to where I used to be, but I still have 40% swelling, my brain hasn’t become clouded over like it used to (no dizziness), and my energy is meh, but it’s been kinda meh for several weeks so hard to tell. Seems anytime I’m fighting off another bug, everything goes waay backwards edema, weakness, heart palps, etc.

I also tried some antibiotics while on it, but that’s cause I had diverticulitis (mild case caught early), it seemed the antibiotics really helped with the antiviral. I felt great for like 2 weeks! Then stated feeling poorly but was fighting off some other virus going around. I tried another round of antibiotics 3 weeks after the first to see if it would work again, but I didn’t see a difference and I think it irritated my GI. However, I was taking cipro/flagyl and maybe another antibiotic like rifaximin might work? Or lower doses?

Jury’s still out on if the long term Paxlovid has permanently lessened my symptoms or just time did that…

I too am trying to find the right concoction of treatment. Never giving up trying because I feel that we are the ones to help find us a cure! Along with our doctors willing to explore outside the box options based on the past as well as what’s being learned through current research. Everything starts with case studies.

@repl Could you describe in more detail how your dizziness feels? I once described my head sensation as dizzy, but at no time do I feel unstable or like I was going to fall. It is pretty much constant. My Doctor has told me that Paxlovid must be used within 5 days of COVID symptoms, but if your experience was different I would love to hear more. Thanks in advance.

Hi arichards3,
Sure! My head felt woozy, like if I got up too fast I’d have to be careful and catch my balance. Not so much dizzy as just really off, I couldn’t process things well and had trouble finding words, forgetful, or following along with playing games. This was all VERY concerning as my mind is super sharp and I never forget things. I’d say it’s similar to how I feel when I have to take Benadryl that really knocks me out and makes me woozy. My brain felt woozy for months until I took Paxlovid.

I noticed Paxlovid really cleared my head and energy within about 2 days. All doctors will tell you Paxlovid is to be used within the first 5 days of acute Covid. It’s what it’s approved for. But you could always ask if they might be willing to do a trial with you to see if it helped at all with your symptoms, in an off label way. I sent my doctor some articles showing how there are trials being used to see if long term use of Paxlovid may help with LC. I mentioned how I was miserable and couldn’t function in life, completely disabled from my symptoms and that I wanted to try this! I mentioned how there’s nothing out there helping me or anyone and if I was okay taking the risk, then please would he help me…. He agreed as long as we did regular bloodwork to make sure my kidneys and liver were fine, and they were.

If your doctor has problems with this, then I’d argue that one trial dose isn’t going to hurt anything and could potentially really help!
I think if you’re going to see a difference, you’d know within a few days, at least I did.

I hope you can try it, and I hope it might help!

Keep me posted!
Best Wishes!

@repl Thanks for such a quick and encouraging response. Our symptoms are similar. I have been through the Mayo program, feel better, but not 100% and had wondered about Paxlovid as a 'knock out punch'.

Do I understand you correctly that you have taken one round of Paxlovid, one and done, or are you continuing to take Paxlovid on a continuous low dosage?

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?