Long COVID ME/CFS patient goes into remission after 3 weeks on the antiviral sofosbuvir

Hip

Hip

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Some more long COVID sofosbuvir success stories (green) and failure reports (red):


Gogumin — 14 May 2023

Sex/Age: 21, male
Start of Long Haul: October 2022

Severity level: moderate, can’t study+work, can’t exercise
Primary symptoms: brain fog, fatigue, PEM, allergic symptoms

Sofosbuvir update: Day 6: Complete recovery from symptoms. Day 35(regarding the pills I took): Doing well.

Just want to add there are times when I stopped sofosbuvir for a few days. I felt a sore throat with brain fog at those times, so I started the pills again. Gonna take for a full 2 months.

I ended taking ledifos on 5/28. Sunday. This is to take antibiotics for my epididymitis.

Btw, by saying the resolution of the symptoms, I am not saying that I recovered to the optimum state pre covid. I was referring to, 'oh from here, I know I can become healthy' state.
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miachi77 — 26 May 2023

Gender and age: Female 43
Start of long haul: August 2022

Severity level: Pretty severe ...profound fatigue , i need to rest in bed most of the day .

Primary symptoms: Heart palpitations, brain fog, numbness in my legs off and on , digestive issues , severe food allergies , flu like symptoms ,insomnia , inability to exercise at all as it always causes a relapse . Sleeping almost comatose all day on my worst days .

Treatments tried: Low inflammatory diet, no sugar, gluten , dairy , alcohol , processed foods ....it's definitely helps . I get much worse when I mess up on my diet. Every kind of supplement ...the ones that seem most helpful are Thymogen , quercetin , B1 and B2 and B multi . Digestive enzymes , Hepacap liver support , Visbiome probiotics . Boluoke , lysine

I noticed a slight improvement when I added 15 MG of ivermectin twice a day and further improvement when I added in Truvada anti viral and 7 MG nicotine patch . After 7 days of adding in these three , I had more energy a clearer head and good improvement in heart symptoms and insomnia .

Unfortunately, I ran out of ivermectin and nicotine patch . I thought taking truvada alone would hold my improvement while I waited a few days for new supplies to arrive. Unfortunately the extreme weakness and fatigue came back after two days .

I then made the decision to try Sofosbuvir which had arrived from india . I regret that decision and I wish I had stayed with the Truvada , ivermectin and nicotine patch combo that was most definitely helping.

I took Sofosbuvir ( velakast ) for nine days . I had a bit more energy on it but the side effects were brutal . Depression , racing agitated thoughts , constant digestive upsets and generally feeling even more awful then usual

I had more improvements with significantly less side effects on the Truvada, ivermectin , nicotine patch combo so I have started back on that treatment and will update in the next week or so .
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Ilemni — 30 May 2023

(I'm formerly "TwiliChaos" on Reddit, and am finally responding here. I'm not a note-taker and thus hadn't been writing down my progress except when asked in DM)

Age/Sex: 25, Male
Start of Long Haul: May 2021

Severity: moderate for neurological tasks only

Primary symptoms: brain fog, difficulty concentrating, possible POTS

Treatments: none (from 3/2021 to 1/2023 I was in a "live to work" phase, so any LC impairments went unnoticed)

Sofosbuvir Update: Start date: April 12th, 2023, Ledifos
Day 14: somewhat improved sleep, probably coincides with getting a Coop pillow around this time
Day 20: no change
Day 21: brain fog mostly or completely gone
Week 5: some worsening on concentration and sleep. Although I've been taking it daily, I hadn't been stringent with the time of day, often off by 4 hours. I missed one day entirely at some point.
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Hip

Hip

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Another long COVID sofosbuvir remission report from Twitter:

@grandedameuk — 3 Jun 2023

I started this a month back & in 5 days my #longcovid symptoms went away. I didnt say anything in case of a relapse. Im day 27 & the only symptoms I get are occasional leg buzzing & involuntary toe twitches. No PEM No Crashes. Totally changed my life. LC is viral persistence.
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Osaca

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Andryr said:
I think it is taken by many here. It is a common anti-diabetes(type 2) medication.
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Oh yes, I know. The case reports aren't great and I'm definitely not presenting it as a useful treatment. I'm just rather suprised it actually showed any antiviral activity (or a big reduction in viral load) in this study even though to me it seems more likely that, that was because of other mechanisms, especially since the people were overweight.
 
Forummember9922

Forummember9922

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I have a question for smart people.

Let's just run with the hypothetical scenario that Sofosbuvir is healing some people with Long Covid and CFS. It is shown that it can be effective against single stranded RNA viruses of which covid itself is that type. I believe also the flu.

My question though is let's say an individual has LC or CFS after a jab- They are 'vax injured' as it's called.

Can inactivated covid 19 RNA from a vax somehow be a culprit? My main question - Would Sofosbuvir theoretically have any effect on copies of inactivated covid19 within the body since it is a single stranded virus?
 
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Osaca

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Without being smart, this is my opinion:

It would depend entirely on the method of action of Sofosbuvir. Sofosbuvirs method of action is inhibiting/blocking a very specific protein Hepatitis C (HCV) needs, namely NS5B (non-structural protein 5B). NS5B is critically needed for viral replication and as such Sofosbuvir is called a chain terminator. It is not an inhibitor of human DNA and RNA polymerases nor an inhibitor of mitochondrial RNA polymerase. The drug is a prodrug, meaning that is inactive and undergoes metabolic changes in the body to become an active medication. In the case of Sofosbuvir this change happens within cells, where it becomes a compound called uridine analog triphosphate, in this case soemthing called GS-461203. This compound is structurally similar to uridine, a naturally occurring nucleotide in the body. The triphosphate form indicates that it contains three phosphate groups. As such the drug is relatively specific to HCV. As such this is one of the rather rare cases where we actually know, or think to know, the exact mechanisms of a drug.

Here's, what I believe to be, an extremely good summary on all the details on Sofosbuvir: https://www.medicines.org.uk/emc/medicine/28539.

Regarding it's effectivity in SARS-COV-2, the reviews are mixed. Some studies suggest it could have an effect by binding to something that looks similar to NS5B in vitro, whilst the biggest study in vivo showed it had no effect. This 2020 study is a study looking at Anti-HCV drugs for repurposing for Covid https://www.sciencedirect.com/science/article/pii/S0024320520302253 and describes the possible method of action.

Interestingly, there's something like an Sofosbuvir analog for SARS-COV-2 called Bemnifosbuvir. Instead of becoming GS-461203, this drug becomes AT-9010 inside the cells. Unfortunately, the drug had mixed results and because the Covid emergency has been declared as ended we probably won't see more of it.

There's of course also Remdesivir which was originally designed for Hepatitis C and then trialled for other single stranded RNA viruses, including Covid-19. I think one could argue that Remdesivir is the better Sofosbuvir when it comes to Covid and possibly Long-Covid (and both are very far off from coming close to Paxlovid).

Now let's discuss your question. I haven't actually heard anybody say that the Covid-19 vaccine cause ME/CFS. Only that it can in some extremely rare cases it causes something that is similar to LC. The only thing that pops up in my mind regarding a possible jab and a ME/CFS connection, would be a vaccine that is actually somehow active, something that somehow pushes theimmune system over a clip, or perhaps something like the HPV vaccine, which is the main field of research of Jasper Mehlsen, who doesn't say that in some extremely rare cases it can cause ME/CFS, but rather something of a ME/CFS like disease.

Now let's talk about the very hypothetical scenario that Sofosbuvir would work for LC. Let's also assume that someone has Post-Vac LC, without ever having had an acute Covid-19 infection (this is the big "if" in this scenario).

Then the method of action of Sofosbuvir against LC would most likely be due to its intracellular mechanism stopping viral replication. If this would work if would at the same time mean that Long-Covid is caused by viral persistence of SARS-COV-2 (or in possibly even rarer cases viral persistence of some other single stranded RNA-viruses like enteroviruses). Autoimmunity or persistence of specific antigens without replication doesn't really make sense here. Even something like viral reactivation of Herpesviruses, as a driver, would be rather unlikely to be the mechanism in this hypothetical scenario. In fact even the opposite is the case, as in HCV patients treatment with Sofosbuvir leads to viral clearance and can actually cause other viruses to reactivate, for instance Herpesviruses https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6450183/.

As such it can a priori have no effect on Post-Vac Long-Covid because in that case no actively replicating virus exists.

There's four things that shoud still be mentioned in this hypothetical scenario of viral persistence:
  1. The Covid vaccines can in extremely rare cases cause myocarditis and pericarditis. This shouldn't be counted towards the Post-Vac count and rather towards something like vaccine damage or what you call "vax injured". As for any other substance there can sometimes be damage. For the Covid-vaccines this is hardly ever the case and terms like Post-Vac LC and "vax injured" shouldn't be used as synonyms.
  2. Many people experience a short-term adverse reaction to the Covid-19 vaccines. This is extremely normal, especially in younger people. However, some people seem to call this Post-Vac.
  3. Real Post-Vac LC is extremely rare. It's far rarer than the already rare scenario which some ME/CFS patients live in, where for example EBV seems to cause ME/CFS, but in 94% of the population it seems to cause no problems. As such it will be extremely hard to untangle.
  4. Someone gets a jab and also has or had previously had acute Covid. In these cases the mechanisms can mix up (for example the jab weaking the immune system making an acute infection more likely or weakening the immune system causing a previous infection to replicate) and what some people attribute to the jab, might actually be nothing but the "classical" Long-Covid. In this scenario the method of action will be the same.
 
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hapl808

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Osaca said:
If this would work if would at the same time mean that Long-Covid is caused by viral persistence of SARS-COV-2 (or in possibly even rarer cases viral persistence of some other single stranded RNA-viruses like enteroviruses).
Click to expand...

I think you also mention about vaccination after Covid infection, which highlights the same mechanism. Maybe vaccines are not causing the illness, but they dysregulate a delicately balanced immune system that was just barely keeping infections at bay. This may be the case with many neurological diseases that seem tied to relatively benign (so we thought) viral infections. So maybe your body has kept a virus at bay for decades, but as you age and your immune system weakens, the damage begins.

Since we have such little active info on what drugs are doing even when they work (metformin, Paxlovid, etc), it makes all of this incredibly challenging to untangle. More frustrating because there seems little urgency to untangle any of it. The USA has spent real money on exactly one virus as far as I can tell - HIV. More money will go into studying that in 2023 than we've spent on Long Covid in the last three years. Yet we have endless money for military saber rattling, bank bailouts, etc.
 
Forummember9922

Forummember9922

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Messages
190
Osaca said:
Without being smart, this is my opinion:

It would depend entirely on the method of action of Sofosbuvir. Sofosbuvirs method of action is inhibiting/blocking a very specific protein Hepatitis C (HCV) needs, namely NS5B (non-structural protein 5B). NS5B is critically needed for viral replication and as such Sofosbuvir is called a chain terminator. It is not an inhibitor of human DNA and RNA polymerases nor an inhibitor of mitochondrial RNA polymerase. The drug is a prodrug, meaning that is inactive and undergoes metabolic changes in the body to become an active medication. In the case of Sofosbuvir this change happens within cells, where it becomes a compound called uridine analog triphosphate, in this case soemthing called GS-461203. This compound is structurally similar to uridine, a naturally occurring nucleotide in the body. The triphosphate form indicates that it contains three phosphate groups. As such the drug is relatively specific to HCV. As such this is one of the rather rare cases where we actually know, or think to know, the exact mechanisms of a drug.

Here's, what I believe to be, an extremely good summary on all the details on Sofosbuvir: https://www.medicines.org.uk/emc/medicine/28539.

Regarding it's effectivity in SARS-COV-2, the reviews are mixed. Some studies suggest it could have an effect by binding to something that looks similar to NS5B in vitro, whilst the biggest study in vivo showed it had no effect. This 2020 study is a study looking at Anti-HCV drugs for repurposing for Covid https://www.sciencedirect.com/science/article/pii/S0024320520302253 and describes the possible method of action.

Interestingly, there's something like an Sofosbuvir analog for SARS-COV-2 called Bemnifosbuvir. Instead of becoming GS-461203, this drug becomes AT-9010 inside the cells. Unfortunately, the drug had mixed results and because the Covid emergency has been declared as ended we probably won't see more of it.

There's of course also Remdesivir which was originally designed for Hepatitis C and then trialled for other single stranded RNA viruses, including Covid-19. I think one could argue that Remdesivir is the better Sofosbuvir when it comes to Covid and possibly Long-Covid (and both are very far off from coming close to Paxlovid).

Now let's discuss your question. I haven't actually heard anybody say that the Covid-19 vaccine cause ME/CFS. Only that it can in some extremely rare cases it causes something that is similar to LC. The only thing that pops up in my mind regarding a possible jab and a ME/CFS connection, would be a vaccine that is actually somehow active, something that somehow pushes theimmune system over a clip, or perhaps something like the HPV vaccine, which is the main field of research of Jasper Mehlsen, who doesn't say that in some extremely rare cases it can cause ME/CFS, but rather something of a ME/CFS like disease.

Now let's talk about the very hypothetical scenario that Sofosbuvir would work for LC. Let's also assume that someone has Post-Vac LC, without ever having had an acute Covid-19 infection (this is the big "if" in this scenario).

Then the method of action of Sofosbuvir against LC would most likely be due to its intracellular mechanism stopping viral replication. If this would work if would at the same time mean that Long-Covid is caused by viral persistence of SARS-COV-2 (or in possibly even rarer cases viral persistence of some other single stranded RNA-viruses like enteroviruses). Autoimmunity or persistence of specific antigens without replication doesn't really make sense here. Even something like viral reactivation of Herpesviruses, as a driver, would be rather unlikely to be the mechanism in this hypothetical scenario. In fact even the opposite is the case, as in HCV patients treatment with Sofosbuvir leads to viral clearance and can actually cause other viruses to reactivate, for instance Herpesviruses https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6450183/.

As such it can a priori have no effect on Post-Vac Long-Covid because in that case no actively replicating virus exists.

There's four things that shoud still be mentioned in this hypothetical scenario of viral persistence:
  1. The Covid vaccines can in extremely rare cases cause myocarditis and pericarditis. This shouldn't be counted towards the Post-Vac count and rather towards something like vaccine damage or what you call "vax injured". As for any other substance there can sometimes be damage. For the Covid-vaccines this is hardly ever the case and terms like Post-Vac LC and "vax injured" shouldn't be used as synonyms.
  2. Many people experience a short-term adverse reaction to the Covid-19 vaccines. This is extremely normal, especially in younger people. However, some people seem to call this Post-Vac.
  3. Real Post-Vac LC is extremely rare. It's far rarer than the already rare scenario which some ME/CFS patients live in, where for example EBV seems to cause ME/CFS, but in 94% of the population it seems to cause no problems. As such it will be extremely hard to untangle.
  4. Someone gets a jab and also has or had previously had acute Covid. In these cases the mechanisms can mix up (for example the jab weaking the immune system making an acute infection more likely or weakening the immune system causing a previous infection to replicate) and what some people attribute to the jab, might actually be nothing but the "classical" Long-Covid. In this scenario the method of action will be the same.
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Thanks yes I can see you are not smart.... (Extreme sarcasm). Thanks for the detailed response I really appreciate it. Please have a CFS Podcast :)
It is surprising that sofosbuvir does work on things *besides* Hep C given that it was designed with such a precise purpose. (Hep C).

More frustrating because there seems little urgency to untangle any of it.
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Agree maybe because it's so invisible and without experiencing it you really can't appreciate the severity. Just imagine if everyone with CFS had their skin harmlessly turn green. All of the sudden it would be a visible illness and we would have a plethora of cures. And theories that we built the pyramids.
 
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Osaca

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Forummember9922 said:
Thanks yes I can see you are not smart.... (Extreme sarcasm). Thanks for the detailed response I really appreciate it. Please have a CFS Podcast :)
It is surprising that sofosbuvir works on anything *BUT* Hep C given that it was designed with such a precise purpose. (Hep C).
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I believe someone on this sub called it Dunning-Kruger knowlegde a couple of weeks ago and I find that quite fitting.

What gives you the impression Sofosbuvir doesn't work against Hep C? From all I know Sofosbuvir is regarded as miracle cure in the Hep C field and has completely changed the treatment landscape, with the only downside being the price. In combination with velpatasvir it's a first line treatment working for all genotypes.
 
Forummember9922

Forummember9922

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Messages
190
Osaca said:
I believe someone on this sub called it Dunning-Kruger knowlegde a couple of weeks ago and I find that quite fitting.

What gives you the impression Sofosbuvir doesn't work against Hep C? From all I know Sofosbuvir is regarded as miracle cure in the Hep C field and has completely changed the treatment landscape, with the only downside being the price. In combination with velpatasvir it's a first line treatment working for all genotypes.
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You misunderstood my post because i worded it poorly.
Changed *but* to *besides*
 
Dude

Dude

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218
Wanted to give a short update regarding my Sofosbuvir attempt. Unfortunately, I had no improvement after 28 days. But if I had Long Covid, it would probably be the first thing I would try. In my case, I do not assume a latent RNA virus.
 
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