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

Stanford also did a study of Paxlovid for LC. I figured it didn’t have a good outcome, because the study was a year ago, and I haven’t found results. These things go at glacier speed. I took a course of Paxlovid on my own, could only get the short course. No help. I took Acyclovir that I already had from a shingles outbreak. I had enough to take for a few weeks (protocol found online). It did not help me either.
That doesn’t mean it wouldn’t help someone else. I’ve tried just about everything I could manage to get my hands on myself, as well as what doctors prescribe for me.
So far (two years) I have not found the silver bullet.
I’m working with an Integrative medical group now, at least they acknowledge that my symptoms are real. Most of my treatments would be considered experimental by western doctors. But what else is there??
I also encountered the doctors who prescribe something or other, and tell you to come back 3-6 months later. No, at that point, you are NOT my doctor.

Both Stanford and NorthShore Group in NE Illinois abruptly cancelled their Paxlovid trials. Appears the Yale trial has uncovered some concerns with the protocol that need to be resolved. As a 71 YO now homebound female on my 3rd Long COVID episode I understand your frustrations. Let's try to maintain hope that later in 2024 there will be treatments and cures.

Thanks for that update. I could not find the outcome from the Stanford study.
Same here...I am pretty much home bound except for doctor appointments. With each new treatment I have hope, and then it lets me down. I am trying to stay hopeful that some help is on the horizon.

I'm HIV+ with an AIDS diagnosis and faithfully take a daily cocktail, for the past four years, had LC have lost ability to workout and run, my job, my expertise, my social network due, ad infinitum to LC. Thankfully LC filtered those "friends" who couldn't roll with me during these unimaginably tough times. So, for me personally - doesn't help whatsoever due to the severity of my symptoms. But, if you have the option, go for it. Make sure that you have your liver and kidneys tested frequently. The side effects (though not like the past) are far from pleasant

Dang, sorry non of the antivirals have helped! I know they definitely helped me but seemed to wane in effectiveness after a time.

I agree that finding relief has gotta be outside the box and off label treatments. At least trying something! Most doctors don’t even want to try… so frustrating.

I’m interested in what your symptoms are and what functional medicine things you’ve done that might be useful?

Hi Littlematters,
Ouch! LC on top of HIV/AIDES! Big HUGS to you! I think we all need some hugs of compassion and understanding…

It’s hard to navigate life when viruses are infecting our bodies - bringing life to a halt! I’ve been homebound for a year after some kind of weird flare up for my 2023 New Year. (I’ve had LC since Jan 2020 but most things resolved over time, but this last one cause heart palpitations, weight gain and muscle weakness/fatigue and brain fog). My earlier symptoms of asthma, and MCAS both got better, I’m hoping this one will too!

As someone who has been on a cocktail for HIV, were you taking Ritonavir? Or what has been your cocktail? Sounds like it helped you still resume life, until LC.

I’m hopeful they will find another cocktail for Covid virus 🙏🏻.

I’ve been taking Paxlovid with ~6 wk blood draws. It’s been fine so far. Although I’m taking a break to see if it’s lost its effectiveness. Do you have to change your cocktail for HIV every so often?

My symptoms are somewhat different than most. My hearing is distorted, ears feel clogged with pressure, and vision is blurry. Also, get congested sinuses (no mucus). I’m very, very dry..eyes, nose, mouth. Digestion wrecked with extreme constipation.
I’ve lost about thirty pounds. My symptoms keep me dizzy and unable to do normal activities.
I’ve had all kinds of tests (tested three times for Sjogrens.

Integrative medicine tries all sorts of treatments. I started with acupuncture and chiropractic. I had already tried those on my own, and never got any relief with different practitioners. Next was vitamin infusions. No real difference with that treatment either.
Now I have just started ozone therapy, and another vitamin infusion targeting nerve repair. Too early to say what the result might be.
My tests indicate Epstein Barr, but I don’t remember ever having it. Some new tests have not been read yet.
???
I keep looking for answers.

I’m curious about your Paxlovid treatment. Do you have a long term prescription? I wasn’t aware that was available.

Sorry to hear you’re going through all of this!

Have you tried any type of antibiotics by chance? Just curious because the constipation GI could be related to Covid infecting gut bacteria and EBV is a gut virus that can hang out in the GI area….

I know there’s rifaximin for SIBO and IBS, but maybe there’s a cocktail of an antibiotic and antiviral that could target both at the same time. There’s a website that discusses Dr. Lerner and CFS, with successful use of antivirals for 6 months for EBV, pretty high doses, with good success rates. Check out drmyhill.co.uk, it’s interesting to explore what they’ve been doing and finding.

I see an infectious disease doctor specializing in CFS,HIV, and long covid soon so hopefully they might have some answers 🙏🏻

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.