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.