ME patient gets better on paxlovid [Reddit] [2023]

[godlovesatrier]

This ME patient here of 8 years:

https://www.reddit.com/r/cfs/comments/1373l64

got better taking paxlovid for 5 days, this was post covid but she says it improved her ME also. She got ME after swine flu in the uk she believes.

Dr Pridgen has postulated that Paxlovid can have an effect on a wide variety of different rna viruses, in much the same way that Molnupivarir does as well.

It's unclear if she's in remission but she does seem much improved - sounds like one whole level up at least.

I personally have seen huge differences in my ME symptoms pre and post Molnu courses. Of course Molnu carries a risk of cancer and it's unclear how large the risk is.

 

[Mary]

Unfortunately Paxlovid did nothing for my ME/CFS . . . I took it last February (almost a year ago! hard to believe). I don't know if it helped with Covid or not though fortunately I didn't develop any post-Covid sequelae that I'm aware of, just my usual ME/CFS crashing etc.!

 

[godlovesatrier]

That's good that you didn't get any long term effects Mary. I'm on day 16 and struggling with fatigue weakness and dizziness. Still got intermittent lung pain with asthma as well.

I think it only works if you have specific viruses causing the ME like specific entereoviruses in my opinion anyway.

 

[Mary]

That's good that you didn't get any long term effects Mary. I'm on day 16 and struggling with fatigue weakness and dizziness. Still got intermittent lung pain with asthma as well.

I'm really sorry to hear that @godlovesatrier ! I hope you bounce back soon!

I think it only works if you have specific viruses causing the ME like specific entereoviruses in my opinion anyway.

fwiw, I did test positive for Coxsackie B and another enterovirus several years ago . . .

 

[godlovesatrier]

That's interesting! I did not know! You may be one of the only milder ME patients I've seen who's got coxsackie b! Alas I still haven't been tested but likely will if it ever gets easy enough again.

Molnu for me I think is the reason I experienced 90% I think at the start of 2023, that and my microbiome was in a good state but I don't think it was the only reason why I felt so good. Anyway hoping to make a full recovery from covid it's a truly awful virus, it's really knocked me down, am at 60% currently, was 50% last week (couldn't bathe/cook/etc).

 

[alwayshopeful]

Paxlovid also seemed to help my ME/CFS. It relieved my Covid symptoms in a few hours after the first dose. I gained energy and reduced my ME fatigue with every dose. And it lasted for several weeks after I finished the paxlovid.. so interesting!! But the taste was atrocious!!

 

[Cipher]

Dr Pridgen has postulated that Paxlovid can have an effect on a wide variety of different rna viruses, in much the same way that Molnupivarir does as well.

I think it only works if you have specific viruses causing the ME like specific entereoviruses in my opinion anyway.

fwiw, I did test positive for Coxsackie B and another enterovirus several years ago . . .

It seems like Paxlovid is very selective to coronaviruses:

PF-07321332 also demonstrated >521-fold selectivity for coronavirus 3CL pro , compared with human cellular proteases, showing little or no activity against this panel of mammalian proteases as well as viral HIV protease (IC50>10 μM at human chymotrypsin and >100 μM at all other proteases tested). PF-07321332 did not inhibit enterovirus 71 (EV71) and human rhinovirus 1B (HRV1B) viral-induced CPE in human RD or HeLa cells, respectively (EC50 >100 μM), nor did it demonstrate cytotoxicity (CC50 of >100 μM). The activity of PF-07321332 seems selective to the coronavirus family.

Source

PF-07321332 = Nirmatrelvir
Paxlovid = Nirmatrelvir & ritonavir


You might find this thread interesting on the topic of long COVID & Paxlovid: Impact of extended-course oral nirmatrelvir/ritonavir (Paxlovid) in established Long COVID: Case series and research considerations (Cohen et al.2023)

 

[godlovesatrier]

really interesting @alwayshopeful I think some of us have strains/viruses that definitely benefit from these drugs especially where they are broad spectrum and non toxic unlike most of the other rna antivirals.

 

[Redtruck99]

@alwayshopeful and anyone else whose ME/CFS got better on Paxlovid:
There is now the RECOVER-VITAL, an NIH trial of extended Paxlovid for Long Covid, up to 25 dys. I am collecting data to investigate if it is working because it is killing EBV. So far, there are published case reports on improvement in Long Covid from the 5-day treatment. I have collected similar reports from people with primary EBV and with MS who say the same thing, while on Paxlovid their primary disease symptoms went away, then came back several days after they stopped Paxlovid. EBV is a suspected cause of ME/CFS. I would like to add some reports on ME/CFS improving from Paxlovid. EBV was finally declared the cause of MS in Jan. 2022. There are several published case reports of long-term MS remission due to the HIV Tenofovir prodrugs (Truvada, Vemlidy) with the theory it is killing EBV. If Paxlovid is also killing EBV, it would help speed the research to find a cure for EBV-associated diseases. I will send this report to the EBV researchers.
Let me know if there are any reports of ME/CFS improving from Paxlovid that I can get permission to include.
Here is the report https://bit.ly/PaxlovidEBV

 

[godlovesatrier]

Sadly if you're lactose intolerant like me, even tiny amounts of lactose give you diherrea and terrible abdominal pain for hours. So that's out. Paxlovid has 132mg lactose per capsule.

 

[Cipher]

Sadly if you're lactose intolerant like me, even tiny amounts of lactose give you diherrea and terrible abdominal pain for hours. So that's out. Paxlovid has 132mg lactose per capsule.

Supplemental lactase might solve that?

 

[Treeman]

I got COVID last week and have been taking paxlovid. I have noticed a very slight improvement in my health. Not earth shattering, but slightly more energy. Just took my last dose. See what happens next.

 

[Treeman]

I got COVID last week and have been taking paxlovid. I have noticed a very slight improvement in my health. Not earth shattering, but slightly more energy. Just took my last dose. See what happens next.

Within a day of stopping the medication the benefits stopped, dam!

 

[Redtruck99]

Within a day of stopping the medication the benefits stopped, dam!

I'm sorry to hear that! Hope you didn't get lasting problems after covid.
I haven't gotten any response on the research I did about Paxlovid making symptoms of MS and EBV disappear for some people, with the theory that it is suppressing EBV, Does anyone know how to get this to Cort Johnson? I have 2 of his blog posts on EBV in my report.
https://bit.ly/PaxlovidEBV

 

[greyheron]

Hi! I took a 15 day trail of Paxlovid (3 packs) in January 2024 for treatment of ME. I've experienced lasting improvement in my brain fog (concentration and awareness) but no improvement in my PEM or chronic fatigue. Based on this experience, I don't think it will be a lasting cure for us ME folk - at least taken as is for a short period of time.

 

[greyheron]

I'm sorry to hear that! Hope you didn't get lasting problems after covid.
I haven't gotten any response on the research I did about Paxlovid making symptoms of MS and EBV disappear for some people, with the theory that it is suppressing EBV, Does anyone know how to get this to Cort Johnson? I have 2 of his blog posts on EBV in my report.
https://bit.ly/PaxlovidEBV

HSV1 (Herpes 1) is also suspected as a cause of both Fibro and ME. I'll have to check out that link you posted.

 

[Tammy]

I'm sorry to hear that! Hope you didn't get lasting problems after covid.
I haven't gotten any response on the research I did about Paxlovid making symptoms of MS and EBV disappear for some people, with the theory that it is suppressing EBV, Does anyone know how to get this to Cort Johnson? I have 2 of his blog posts on EBV in my report.
https://bit.ly/PaxlovidEBV

@Cort

 

[Treeman]

I'm sorry to hear that! Hope you didn't get lasting problems after covid.

My daughter caught it first which gave me time to get ready for it. No lasting negative effects thanks.

 

[Redtruck99]

Hi! I took a 15 day trail of Paxlovid (3 packs) in January 2024. I've experienced lasting improvement in my brain fog (concentration and awareness) but no improvement in my PEM or chronic fatigue. Based on this experience, I don't think it will be a lasting cure for us ME folk. I do hope, though, that someone can get cured and tell us all about it!!!!!

Wow thank you for this information! I'm sorry it didn't have lasting effects.
An ideal trial would do an all-virus panel before and after treatment to detect the impact of any antiviral therapy.

Yes, HSV-1 is a disease driver in MS as well. VZV, HSV-1,2, HHV-6, CMV, and Lyme contribute to these infection-associated diseases.

 

[godlovesatrier]

I need the new Japanese covid antiviral. It hasn't got lactose in it. Until that's available I can't tes the theory. I'd do anything to get rid of my sound sensitivity and neurological injury. I don't like to call it damage because it's actually reversible. I can manage my physical symptoms with a variety of shops and other medication but for neuro I've only got low dose doxycycline and that's it. I'm not really very keen on taking abilify.