Did anyone with Long COVID, take Paxlovid ?

Posted by autumn1917 @autumn1917, Jul 8, 2023

Just wondering, if anyone with Long COVID took Paxlovid?

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autumn1917 | @autumn1917 | Jul 10, 2023

In reply to @bebold "I had covid in July of 2020 before there were any shots had a very mild..." + (show)

@bebold

I had covid in July of 2020 before there were any shots had a very mild case but ended up with long covid. I felt like my life was over even though I had a very very mild case. In July 2020, all of the testing was still done at your doctor's office and I never tested positive but covid was at its height and my doctor sent me home to isolate till I felt better. Which never happened. I never felt better. My pulse ox was rarely above 90. I would even go to the ER with my pulse ox in the high 80s and nobody did anything, they would just send me home because I didn't test positive. My doctor tried to get me into the local long covid clinic and they wouldn't accept me because I never tested positive.

Finally my doctor did an IGG which is only positive if you've actually had it, it's got nothing to do with whether or not you've gotten vaccines. It's not a blood test for immunity. And it came back high that yes indeed, I had had covid and now I had proof so that they could get me into the long covid Clinic!

Except by then it was already 2 years barely ever leaving the house except for doctor appointments. Pulmonologists, cardiologists, x-rays, heart x-rays etc., lung x-rays, MRIs, CAT scans, a partially collapsed lung and kidney stones! Then suddenly, I'm needing oxygen at night and an inhaler for asthma. Then I'm diagnosed with POTS and now I'm on high blood pressure medication. This was all new since covid. B the time I had the blood test to prove that I actually had had covid the previous year, and could actually be diagnosed with long covid, the clinic was full because people were testing at home now and didn't need proof that they had tested positive anymore. So my appointment with the long covid Clinic was hoing to be in 8 months.

I was fully boosted and all that stuff and then in August 2022 I got covid again. I tested negative again but a person I had been with on Friday had the exact same symptoms as me on Monday and she tested positive. Although you aren't supposed to be on paxlovid unless you tested positive it was very clear that I'm just not somebody who ever tests positive. I was put on Paxlovid anyway and I found my long covid symptoms after being on paxlovid improved. I finally got to go to the long covid clinic and that was sadly a waste of time. I had waited two and a half years for a 2-hour appointment that didn't help me. So now I'm at the 3-year mark. I'm on high blood pressure medication and I am now on a CPAP which my understanding is covid actually can be helped using a CPAP and I find my breathing and my life so much improved just having been on a CPAP for a month. I feel like I wish I could use my CPAP 24/7! It's possible I had sleep apnea before covid but covid is known to make either cause or make mild sleep apnea worse. I also have a chronic pain inflammation condition and covid took me out of remission back into a full flare going on 3 years now so I'm on crutches since covid in July of 2020 and just purchased an electric wheelchair.

It's so hard for me when I hear people say that covid is over. Whatever was left of my life it feels like it went away. But I started writing this to tell you that when I took the paxlovid last August with the second go-round of covid it actually helped. I think paxlovid ought to be looked at as treatment for long covid. I'm not the only one I've ever heard of that has had long covid then got put on the medication and got somewhat better.

So I don't know about Paxlovid causing long covid but I believe it can help it. If the inflammation of the vaccine causes you great distress then the inflammation of covid is going to destroy your life.

So if you're reading this and you find yourself in similar situation as I've been in get a sleep study! I've had no trouble adjusting to the CPAP and in a minute she put it on my nose in the sleep study test I felt like I could breathe for the first time in 3 years.

I don't know that I answered you a question and I kind of went off in the field but CPAP is right now my chance of living again. And yes I did just buy an electric folding wheelchair. But people/friends who are tired of hearing me say I'm sick, well, I'm afraid to start using the wheelchair for being further judged. Covid, long Covid, destroyed my life and covid has destroyed millions of lives. But we want to ignore all of us now.

I don't know if this helped you and I don't know if it helped anybody else to read this, but I count my blessings everyday that I've been using CPAP for a month now and then I've adjusted beautifully and I feel like I have somewhat a little bit of my life back. I even used it during the day if I'm just sitting watching TV because it really does help. Sleep apnea is caused by tissue in your throat closing your airway. "Obstructive sleep apnea." The inflammation of covid makes it worse and my body is 200% inflamed. I work at trying to regulate my diet with gluten and sugar etc. But sometimes, my best medication is dark chocolate M&Ms! Lol Take good care.

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Thank you for sharing your story. I’m so sorry. My long COVID is so mild compared to yours. I’m sorry I didn’t take Paxlovid when I had the chance.

longcovidcelsi | @longcovidcelsi | Jul 11, 2023

In reply to @bebold "I had covid in July of 2020 before there were any shots had a very mild..." + (show)

@bebold

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You're not alone. I got covid at the end of July 2020 as well and I've been totally debilitated since then. Was 33 and healthy/active. Now 36 with the stamina and functionality of a very old sick person. You should try testing resting lactic acid levels. It's the only thing that came back as out of wack. They think high resting lactic acid levels is causing some persistent longcovid symptoms (though not all).

BeBold | @bebold | Jul 11, 2023

In reply to @autumn1917 "Thank you for sharing your story. I’m so sorry. My long COVID is so mild compared..." + (show)

There's no such thing as mild long covid!

And having said that I'm 68 I'm not 26 and have lost the ability to run a marathon every weekend. The fact that I live with an autoimmune pain disorder that already elevates my cytokines normally has made this worse pain wise. My doctor is really good at trying to get treatment for me so I will definitely get those levels checked there's also a video on YouTube by a doctor Harmen I think about micro clot issues.

I don't think I said I'm actually scheduled for another CAT scan of my lungs tomorrow. I was in the ER with chest pain and though I was ignored again with my blood oxygen still being in the high 80s something showed up on my lung X-ray that appears to be more area of collapse. Even with CPAP with my oxygen threaded through it I can't get my O2 level up. So I feel tons better on CPAP, it's definitely worth getting tested as Covey can cause sleep apnea issues but body inflammation can also be treated with a CPAP machine and better oxygenation.

We can't compare. And long covid is not well treated not well studied in the world wishes that we would just go away. So sorry. We have each other and that's really important to me.

BeBold | @bebold | Jul 11, 2023

In reply to @longcovidcelsi "You're not alone. I got covid at the end of July 2020 as well and I've..." + (show)

Check micro clotting on YouTube too. They're a blood levels so now that I think of it I'm not sure my doctor ever did them. Hmm.

The long covid Clinic ordered pool therapy for me. I went three times and it was exhausting just getting in and out of a bathing suit especially a wet one.

By the time I got in my car my oxygen was so low I was too confused to drive sometimes for an hour or two I'd sit in the parking lot outside the pool therapy building. And really nothing she was doing it was addressing any of my covid issues.

I quit after three times sadly. And as I've been saying I am 68, I've been a disabled nurse my entire life so it's not like I've been running marathons and lost what you have. I am so sorry you're so young going through this and I hope you have more understanding people in your life than I feel that I do.

People in my life just get tired of hearing it so i just shut up. On the other hand I just now got off the ladder taking my curtains down so I guess that's good? It's my one thing for today but it was something. How so I'm doing a load of laundry so that's amazing. Today I put away laundry that I folded last week. Lol. At some point it's just the little things and sometimes I just need to laugh at the absurdity of life and really glad that my insurance pays for therapy and that unfortunate enough to have a therapist who lives with chronic health conditions and treats people with chronic health conditions. I feel very fortunate in the long run...walk.

As I said above we have each other who get it. Namaste for good days huh? I've been needing to wash my curtains forever now if I can just get the sheets back on my bed from last week. My best.

cindelee617 | @cindelee617 | Jul 12, 2023

In reply to @autumn1917 "I almost feel guilty complaining, because my LC is mild compared to many others." + (show)

Yes I did. Just my thoughts.
My intuition told me not to take it. I went against how I felt and took it. I believe that may of added to the issues.
No proof, just how I feel

gsgambhir | @gsgambhir | Dec 8, 2023

In reply to @jhamil01 "Suffering with long covid since 2020. A few months ago tried Paxlovid x5 weeks with no..." + (show)

Hi @jhamil01 , hope you are feeling better now. Would you mind telling which doctors are prescribing Paxlovid for treatment of long Covid. Were you part of a clinical trial? Thank you

lisajade4mayo | @lisajade4mayo | Dec 9, 2023

In reply to @gsgambhir "Hi @jhamil01 , hope you are feeling better now. Would you mind telling which doctors are..." + (show)

I’m replying just because I am in a similar situation. I had very adverse reactions to the vaccines. I was debilitated after my second Pfizer vaccine in April of 2021. I was told that I was insane even though I could barely walk. My inflammation markers were through the roof. I tested positive for RA even though I’d never had any signs of RA before in my life. I was an athlete. I kept trying to continue with life, but it was killing me. I didn’t respond to treatment for RA. I failed to mention that I started losing weight rapidly after vaccine #2. I got Covid in April of this year and because I was now considered immune compromised, I took paxlovid. Almost all of my post vaccine symptoms were gone and Covid was minimal. Fever went away in 24 hours. Never got to my lungs. The sad part is that my vaccine symptoms came back quickly. It took me a year to get on the 15 day paxlovid trial. I’m not on a trial per se because I am actually getting the medication and not a placebo. I just started two and a half days ago. My vaccine injury symptoms had progressed so I’m not feeling that amazing feeling yet. I’m trying to be hopeful, but it’s hard. I do not have long covid. This all started with the vaccines. Swollen joints, muscle wasting and pain. 15 pounds underweight. I know that Stanford, Yale and Mayo are doing the trial. I found a local physician in the Bay Area who is treating long covid and vaccine injuries. Bay Area in California. I don’t have any respiratory issues because COVID was so mild - likely from the paxlovid. I do feel like my life is over and I’m not sure what Plan X (by now) will look like if I don’t show improvement. I was in the ER a month ago due to so much weakness. It was looking neurological. I’m seeing a neurologist in a week. I’m trying to give this a shot. I feel that if I had been heard over the past two years that I would not be this bad. I went from being an athlete to ruined. I can’t even drive at the moment. I’m still trying to work because I’m self employed and work from home. If I stop working now, if I live, I will have used all of my savings for retirement. I will update when I can.

jhamil01 | @jhamil01 | Dec 9, 2023

In reply to @gsgambhir "Hi @jhamil01 , hope you are feeling better now. Would you mind telling which doctors are..." + (show)

I had it prescribed by a friend of mine and I was not enrolled in a clinical trial. It had no effect on my symptoms.
Otherwise I am still battling. I wish you luck.

dloos | @dloos | Dec 10, 2023

Paxlovid was not widely available when I had active Covid. I wish I could have taken it then. I have been sick for almost two years now. I did manage to get a short dose (regular 5 day dosage) after having Long Covid for over a year. It did nothing for me. I also took Acyclovir for a few weeks because I already had some left from a shingles outbreak. I have read that some people do get help from anti-virals late in the game. It has not worked out for me OR, I didn’t have enough to continue long enough.
I am now with an Integrative doctor group, which does have therapies for LC. So far, none of the therapy has helped me. Discouraging to say the least!

Forlorn Theressa | @theressa | Dec 12, 2023

In reply to @autumn1917 "I was wondering, because I had a mild case of COVID, Thanksgiving 2022. I picked up..." + (show)

I took paxlovid and boosted like many other long covid sufferers.
I got a “mild” case of covid in dec 22, from my spouse. I have long covid, which includes mast cell activation syndrome. I had a colonoscopy in July. I ended up with systemic inflammatory response syndrome and almost died, and in the hospital for a few days.
It was my 5th colonoscopy- so I was shocked- literally.
Anyway- I went to the Mayo Long covid clinic..and am still a virtual patient.
Yale has a great LC clinic. UNC has a great clinic. Many universities are starting up lc clinics. Research is happening.
They are finding that HIV anti virals may help. Also, they have found that sarscov2 stays in our bodies..which may be the cause of long covid. I follow a bunch of scientists from around the planet- and keep up on covid and lc. Don’t give up hope. I know that some treatment will be available in the future.

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