Dr. Chia

[Martin aka paused||M.E.]

Interesting article on none-cytolytic enteroviruses. @Hip would an antiviral be effective only against lytic or also none-cytolytic infections? Thanks in advance!
https://me-pedia.org/wiki/Non-cytolytic_enterovirus

 

[Hip]

would an antiviral be effective only against lyric or also none-cytolytic infections?

I think it would depend on the mechanism of action of the antiviral. There are almost no antiviral drugs for enterovirus, really only just ribavirin, and interferon if you want to class that as an antiviral. Oxymatrine is an immunomodulator, not an antiviral (an immunomodulator works by boosting the immune response against a virus, whereas an antiviral works by thwarting the viral lifecycle).

Dr Chia found that ribavirin lowered enterovirus antibody titers and improved fatigue and other ME/CFS symptoms in a matter of weeks. However, patients relapse on discontinuation of this drug; and because ribavirin is toxic, you cannot take it long term.

 

[Martin aka paused||M.E.]

I think it would depend on the mechanism of action of the antiviral. There are almost no antiviral drugs for enterovirus, really only just ribavirin, and interferon if you want to class that as an antiviral. Oxymatrine is an immunomodulator, not antiviral.

Dr Chia found that ribavirin lowered enterovirus antibody titers and improved fatigue and other ME/CFS symptoms in a matter of weeks. However, patients relapse on discontinuation of this drug; and because ribavirin is toxic, you cannot take it long term.

So tenofovir would not work … ok thank you!
@Push Fwd

 

[Hip]

So tenofovir would not work

Tenofovir works, according to Dr Chia. He says it works for a subset of patients, but says less than 1 in 3 patients benefit from this drug. Dr Weir in the UK also used tenofovir for ME/CFS, but I don't know if he still uses it.

Nobody knows why tenofovir works, but tenofovir has potent immunomodulator properties, as well as being a HIV antiviral, so it may work via an immunomodulatory action against ME/CFS viruses.

Tenofovir is also antiviral for the human endogenous retroviruses (HERVs) that some studies have shown can be active in ME/CFS.


I know one person on this forum with CVB4 who did well on tenofovir 150 mg daily. After just a few months, he said PEM became a thing of the past, and he would no longer get any PEM.

Furthermore, his gains he made on tenofovir were permanent: the benefits remained even after he stopped this drug. Same thing happened with another PR member: tenofovir made major improvements, and those remained even after stopping.


I would really like to try tenofovir, but when I started taking even very low introductory doses, my mental health started to get worse, forcing me to stop. Unfortunately I find lots of immune modulating drugs worsen my mental health.

 

[Martin aka paused||M.E.]

Tenofovir works, according to Dr Chia. He says it works for a subset of patients, but says less than 1 in 3 patients benefit from this drug. Dr Weir in the UK also used tenofovir for ME/CFS, but I don't know if he still uses it.

Nobody knows why tenofovir works, but tenofovir has potent immunomodulator properties, as well as being a HIV antiviral, so it may work via an immunomodulatory action against ME/CFS viruses.

Tenofovir is also antiviral for the human endogenous retroviruses (HERVs) that some studies have shown can be active in ME/CFS.


I know one person on this forum with CVB4 who did well on tenofovir 150 mg daily. After just a few months, he said PEM became a thing of the past, and he would no longer get any PEM.

Furthermore, his gains he made on tenofovir were permanent: the benefits remained even after he stopped this drug. Same thing happened with another PR member: tenofovir made major improvements, and those remained even after stopping.


I would really like to try tenofovir, but when I started taking even very low introductory doses, my mental health started to get worse, forcing me to stop. Unfortunately I find lots of immune modulating drugs worsen my mental health.

That’s bad! I have mental problems too (now). Oh man, I wish I just had EBV or HHV6 or so…
Thank you so much for your help!

 

[GlassCannonLife]

@Diwi9 didn't respond either... Only to Valtrex

He says "I responded to the equilibrant and valtrex" in a post above - I also remember a thread from a few years ago pretty sure where he spoke about it.? I could be wrong but I thought (he right?) was one of the few on here that responded quite well - initially at least

 

[Martin aka paused||M.E.]

He says "I responded to the equilibrant and valtrex" in a post above - I also remember a thread from a few years ago pretty sure where he spoke about it.? I could be wrong but I thought (he right?) was one of the few on here that responded quite well - initially at least

Oh them my brain didn't work when I posted... Sorry

 

[GlassCannonLife]

Tenofovir works, according to Dr Chia. He says it works for a subset of patients, but says less than 1 in 3 patients benefit from this drug. Dr Weir in the UK also used tenofovir for ME/CFS, but I don't know if he still uses it.

Nobody knows why tenofovir works, but tenofovir has potent immunomodulator properties, as well as being a HIV antiviral, so it may work via an immunomodulatory action against ME/CFS viruses.

Tenofovir is also antiviral for the human endogenous retroviruses (HERVs) that some studies have shown can be active in ME/CFS.


I know one person on this forum with CVB4 who did well on tenofovir 150 mg daily. After just a few months, he said PEM became a thing of the past, and he would no longer get any PEM.

Furthermore, his gains he made on tenofovir were permanent: the benefits remained even after he stopped this drug. Same thing happened with another PR member: tenofovir made major improvements, and those remained even after stopping.


I would really like to try tenofovir, but when I started taking even very low introductory doses, my mental health started to get worse, forcing me to stop. Unfortunately I find lots of immune modulating drugs worsen my mental health.

Did you try oxymatrine in the past? Or did you also have the same mental health side effects. Do you think they are caused by an autoimmune mechanism, or potentially inflammation? It would be interesting to know your serum Th1/Th2 cytokine profile - have you ever had this tested?

 

[GlassCannonLife]

Oh them my brain didn't work when I posted... Sorry

All good - maybe him saying equilibrant (China's brand version) vs oxymatrine made you dismiss it

 

[GlassCannonLife]

My current functioning is low...in bed 20-22 hours. Yes, I do expect to be on AV's long-term based on my recurring immunological symptoms. Downturns are normally accompanied with sore throats, cold sores, and swollen lymph nodes.

Wow that's really rough. What level had you recovered to with all of the antivirals back in the day?

 

[Hip]

Did you try oxymatrine in the past? Or did you also have the same mental health side effects.

Originally when I had ME/CFS bordering on the severe level, and my mental health was correspondingly worse also, I could not take oxymatrine, as it greatly increased depression.

But many years later, when I had improved my health via a high-dose selenium protocol, I found I could take oxymatrine without side effect. Unfortunately, oxymatrine did not help.

Do you think they are caused by an autoimmune mechanism, or potentially inflammation?

Hard to say, but my guess would be these treatments may ramp up brain inflammation, which is linked to mental health conditions like depression, anxiety, etc.

It would be interesting to know your serum Th1/Th2 cytokine profile - have you ever had this tested?

I've never been tested for that.

 

[GlassCannonLife]

Originally when I had ME/CFS bordering on the severe level, and my mental health was correspondingly worse also, I could not take oxymatrine, as it greatly increased depression.

But many years later, when I had improved my health via a high-dose selenium protocol, I found I could take oxymatrine without side effect. Unfortunately, oxymatrine did not help.





Hard to say, but my guess would be these treatments may ramp up brain inflammation, which is linked to mental health conditions like depression, anxiety, etc.





I've never been tested for that.

Your selenium story is fascinating. So you are still doing that and it is still effective to the same extent? Ie you are virtually kept at a mild level of cfs purely with selenium supplementation for years on end?

@Martin aka paused||M.E., maybe you should try the high dose selenium just in case.? Seems harmless in the short term at least

 

[Martin aka paused||M.E.]

Your selenium story is fascinating. So you are still doing that and it is still effective to the same extent? Ie you are virtually kept at a mild level of cfs purely with selenium supplementation for years on end?

@Martin aka paused||M.E., maybe you should try the high dose selenium just in case.? Seems harmless in the short term at least

Hm ok why not

 

[Hip]

Your selenium story is fascinating. So you are still doing that and it is still effective to the same extent? Ie you are virtually kept at a mild level of cfs purely with selenium supplementation for years on end?

Yes, I am still taking 400 mcg of selenium every day on a empty stomach. I have not tried stopping it in recent years, but in the past, every time I stopped it, by health level would drop after about 5 days.

I guess I should retest stopping it at some point. But the trouble is, once I restart, it take another 10 days before my ME/CFS improves again. So then I lose about 2 weeks in a more severe state.

I would say before selenium I was moderate, but bordering on severe. But while taking selenium, it places me at the top end of moderate, nudging on mild. It a very noticeable improvement.



The other thing that has helped me is the high dose transdermal B12 oils, which deliver a systemic dose of B12 equivalent to an injection. These have improved brain fog and mental clarity a bit, but not really any other ME/CFS symptoms.

 

[GlassCannonLife]

Yes, I am still taking 400 mcg of selenium every day on a empty stomach. I have not tried stopping it in recent years, but in the past, every time I stopped it, by health level would drop after about 5 days.

I guess I should retest stopping it at some point. But the trouble is, once I restart, it take another 10 days before my ME/CFS improves again. So then I lose about 2 weeks in a more severe state.

I would say before selenium I was moderate, but bordering on severe. But while taking selenium, it places me at the top end of moderate, nudging on mild. It a very noticeable improvement.



The other thing that has helped me is the high dose transdermal B12 oils, which deliver a systemic dose of B12 equivalent to an injection. These have improved brain fog and mental clarity a bit, but not really any other ME/CFS symptoms.

Nice. Yeah it's tricky to try going off if it makes you worse for so long. What dosage of B12 do you take daily from the oils?

 

[Hip]

What dosage of B12 do you take daily from the oils?

One standard pump from the oil bottle dispenser one a week, which is the equivalent of around 2000 mcg B1 injection. Greg says to take one pump dose daily, but I find once a week is enough for me.

 

[Boba]

I received oxymatrine. I‘m not sure whether to take it or not. I think my problems are autoimmune, so no clue whether this makes sense, It‘s not recommended. Even if my problem is an RNA Virus like Covid, this doesn’t seem right. Any thoughts?

 

[Martin aka paused||M.E.]

I received oxymatrine. I‘m not sure whether to take it or not. I think my problems are autoimmune, so no clue whether this makes sense, It‘s not recommended. Even if my problem is an RNA Virus like Covid, this doesn’t seem right. Any thoughts?

I heard app two ppl with AI that they took it without any problems…
And: If the inciting pathogen is killed, then the autoimmune response would usually subside within a few months with anti-inflammatory treatment.
https://phoenixrising.me/archives/865

 

[Boba]

I heard app two ppl with AI that they took it without any problems…
And: If the inciting pathogen is killed, then the autoimmune response would usually subside within a few months with anti-inflammatory treatment.
https://phoenixrising.me/archives/865

Thank you! What would be an antiinflammatory then? NSAIDS?

 

[Martin aka paused||M.E.]

Thank you! What would be an antiinflammatory then? NSAIDS?

Er….. perhaps Boswellia @Learner1 ?