Tenofovir (Viread) / Raltegravir (Isentress) Cures ME/CFS Patient Sick for 20 Yrs + Tenofovir Poll

[Jesse2233]

I think he's been muzzled.

Anything's possible, but I'm more inclined to believe the multiple insults one outcome line of thought

What's your thinking on him being muzzled?

 

[nandixon]

One thing that I've noticed, as a former medicinal chemist, is that all of the drugs that have been found to be possibly helpful in ME/CFS, anecdotally or otherwise, are seemingly almost without exception also potent anti-inflammatory agents. (Anti-inflammatory here meaning having an ability to modulate pro-inflammatory and/or anti-inflammatory cytokines in a favorable anti-inflammatory direction. Note that some cytokines have both pro- and anti-inflammatory potential.)

And this anti-inflammatory action is shown to be unrelated to the presence of any pathogen (or is with respect to a different pathogen than the intended use of the drug). So, for example, certain antibiotics (e.g., macrolides) and antivirals (e.g., Valcyte), oxymatrine, LDN, etc, are all potent anti-inflammatory agents. (As an aside, it's nice to see that Dr Kenny De Meirleir is recognizing this and hopefully he'll have a chance to look at the JAK1 inhibitor, filgotinib, at some point.)

Anyway, this list also includes tenofovir. I can't remember if someone already referenced this study, but here's tenofovir’s effect on cytokines in normal PBMCs:

Tenofovir selectively regulates production of inflammatory cytokines and shifts the IL-12/IL-10 balance in human primary cells

I've sometimes wondered if finding at least a partially helpful drug treatment (not a cure) for a given ME/CFS patient is perhaps to some extent about finding one of the above drugs that modulates the patient's cytokine profile in a way that's favorable for that particular person.

 

[Jesse2233]

@nandixon Great observation. Do you think matching a drug to one's cytokine profile would be effective or is the reality likely to be more complex and simply call for trial and error?

Also can results from Ampligen / interferon and Rituximab / Clyclophosamide / plasmapheresis be explained through the same anti-inflammatory lense?

 

[nandixon]

@nandixon Great observation. Do you think matching a drug to one's cytokine profile would be effective or is the reality likely to be more complex and simply call for trial and error?

Good question. With this disease, probably more complex would be our luck.

Also can results from Ampligen / interferon and Rituximab / Clyclophosamide / plasmapheresis be explained through the same anti-inflammatory lense?

I imagine that's likely, although rituximab and cyclophosphamide may have more of a curative potential depending on whatever's really going on in ME/CFS.

 

[heapsreal]

Anything's possible, but I'm more inclined to believe the multiple insults one outcome line of thought

What's your thinking on him being muzzled?

They just shut the book on it without really opening the book. There was no further research to say if it was pathogenic or not and 85% is a pretty high percentage. The basic reply was, we dont think its an issue?? But they cant confirm one way or the other. We dont even know what type of retrovirus it is. Alot of unanswered questions on it.

 

[patient.journey]

They just shut the book on it without really opening the book. There was no further research to say if it was pathogenic or not and 85% is a pretty high percentage. The basic reply was, we dont think its an issue?? But they cant confirm one way or the other. We dont even know what type of retrovirus it is. Alot of unanswered questions on it.

I don't know how they don't think this is an issue , why they didn't say what retrovirus was found !!
What I know that the number of retroviruses in human blood was found can be counted in two hands by the most !

How can they just skip it , not talk about it and ignore it ?

Some one should start asking for answers to this part !

 

[patient.journey]

One thing that I've noticed, as a former medicinal chemist, is that all of the drugs that have been found to be possibly helpful in ME/CFS, anecdotally or otherwise, are seemingly almost without exception also potent anti-inflammatory agents. (Anti-inflammatory here meaning having an ability to modulate pro-inflammatory and/or anti-inflammatory cytokines in a favorable anti-inflammatory direction. Note that some cytokines have both pro- and anti-inflammatory potential.)

And this anti-inflammatory action is shown to be unrelated to the presence of any pathogen (or is with respect to a different pathogen than the intended use of the drug). So, for example, certain antibiotics (e.g., macrolides) and antivirals (e.g., Valcyte), oxymatrine, LDN, etc, are all potent anti-inflammatory agents. (As an aside, it's nice to see that Dr Kenny De Meirleir is recognizing this and hopefully he'll have a chance to look at the JAK1 inhibitor, filgotinib, at some point.)

Anyway, this list also includes tenofovir. I can't remember if someone already referenced this study, but here's tenofovir’s effect on cytokines in normal PBMCs:

Tenofovir selectively regulates production of inflammatory cytokines and shifts the IL-12/IL-10 balance in human primary cells

I've sometimes wondered if finding at least a partially helpful drug treatment (not a cure) for a given ME/CFS patient is perhaps to some extent about finding one of the above drugs that modulates the patient's cytokine profile in a way that's favorable for that particular person.

What you are saying is true , CFS , GWS , Arthritis , IBS , IBD and other kind of sickness would have adavantge of anti inflammatory agents u mentioned , Becaus these kind of illness have an up normallty in cytokines !

Those treatment would help , and I believe some of treatments coming by next year might help more like JAK2 I think , but it's like we are just going around the reason , treating the result not the cause .

Am with any thing that would help my health but am against the circle we are in .

We can't be sure all those agents are helping for the same reason as it's anti inflammatory only but it might be true , I really would go by retroviruses theory as it's the nearest to the truth and direct to be causing this for us !

 

[fingers2022]

One thing that I've noticed, as a former medicinal chemist, is that all of the drugs that have been found to be possibly helpful in ME/CFS, anecdotally or otherwise, are seemingly almost without exception also potent anti-inflammatory agents....

Anyway, this list also includes tenofovir. I can't remember if someone already referenced this study, but here's tenofovir’s effect on cytokines in normal PBMCs:

Tenofovir selectively regulates production of inflammatory cytokines and shifts the IL-12/IL-10 balance in human primary cells

Excellent, thanks for the link to that study.
So, Tenofovir gives us not one, but two chances - RV regulation and/or cytokine regulation.
Quids (or $$$) in!
No wonder I'm feeling good after my 1500m swim this morning and my 42 mile hilly bike ride yesterday
Check it out folks and get some more data on that poll

 

[IThinkImTurningJapanese]

No wonder I'm feeling good after my 1500m swim this morning and my 42 mile hilly bike ride yesterday

That's remission.

 

[Hip]

all of the drugs that have been found to be possibly helpful in ME/CFS, anecdotally or otherwise, are seemingly almost without exception also potent anti-inflammatory agents.

That anti-inflammatory action could well be an important part of the efficacy of tenofovir.

It's interesting that Dr Jamie Deckoff-Jones found tenofovir had an immediate benefit on her ME/CFS symptoms, appearing within days of starting this drug. And when she stopped tenofovir on various occasions, she found these benefits disappeared again within days (see her quote in this post).

The appearance and then disappearance of those benefit is too fast to be due to an antiviral effect (antivirals work slowly, taking weeks or months for them to start lowering viral loads). Which suggests those immediate benefits might be due to an anti-inflammatory action (as we all know when taking an aspirin, anti-inflammatory effects kick in within hours).

That's remission.

Note that even before starting antiretrovirals, @fingers was probably in a better state of physical fitness than many of the healthy population, even with his ME/CFS, as he explains in this post. So as @fingers says himself, he's not the best of examples in terms of gauging the benefits of antiretrovirals, as by most people's standards, his physical fitness level was excellent even with his illness.


I like to gauge the efficacy of an ME/CFS treatment by how many levels it can raise patients on the ME/CFS scale of:

Severe ➤ Moderate ➤ Mild ➤ Remission/Cured

That ME/CFS scale is detailed in this post. If a treatment can for example move you up from mild ME/CFS to remission, that's a one-level improvement on the scale. In the case of @fingers and @Hustler, they started with mild ME/CFS, and after antiretrovirals, moved up to a position where they feel in remission. So that's a one-level improvement.

I'd like to hear some stories from patients who managed a two-level or three-level improvement on antiretrovirals, and there maybe some of those out there.

 

[patient.journey]

That anti-inflammatory action could well be an important part of the efficacy of tenofovir.

It's interesting that Dr Jamie Deckoff-Jones found tenofovir had an immediate benefit on her ME/CFS symptoms, appearing within days of starting this drug. And when she stopped tenofovir on various occasions, she found these benefits disappeared again within days (see her quote in this post).

The appearance and then disappearance of those benefit is too fast to be due to an antiviral effect (antivirals work slowly, taking weeks or months for them to start lowering viral loads). Which suggests those immediate benefits might be due to an anti-inflammatory action (as we all know when taking an aspirin, anti-inflammatory effects kick in within hours).





Note that even before starting antiretrovirals, @fingers was probably in a better state of physical fitness than many of the healthy population, even with his ME/CFS, as he explains in this post. So as @fingers says himself, he's not the best of examples in terms of gauging the benefits of antiretrovirals, as by most people's standards, his physical fitness level was excellent even with his illness.


I like to gauge the efficacy of an ME/CFS treatment by how many levels it can raise patients on the ME/CFS scale of:

Severe ➤ Moderate ➤ Mild ➤ Remission/Cured

That ME/CFS scale is detailed in this post. If a treatment can for example move you up from mild ME/CFS to remission, that's a one-level improvement on the scale. In the case of @fingers and @Hustler, they started with mild ME/CFS, and after antiretrovirals, moved up to a position where they feel in remission. So that's a one-level improvement.

I'd like to hear some stories from patients who managed a two-level or three-level improvement on antiretrovirals, and there maybe some of those out there.

@heapsreal did have more than one level of improvement !

After all those years and this big fourm you would find couple of people who did try ARV , that why u won't have an answer to ur question of sever sick people getting better

 

[Hip]

@heapsreal did have more than one level of improvement !

I may be wrong, but I don't think so. I've talked to @heapsreal on the Health Rising forum about his experiments in tenofovir. He was one of the first people I know who tried it.

 

[IThinkImTurningJapanese]

@Hip, I hate looking at that list, but in my case you're right.

The medicine I'm taking has ONLY resulted in one level of improvement. I thought it was more.

 

[patient.journey]

http://forums.phoenixrising.me/index.php?threads/my-experience-on-antiretrovirals.41074/

It's the same story all over again

 

[Hip]

The medicine I'm taking has ONLY resulted in one level of improvement. I thought it was more.

I think you can't really judge an ME/CFS treatment just on just one or two patient stories, because usually the efficacy of the same treatment varies a lot from one patient to the next.

If we take oxymatrine, Dr Chia has examples of bedbound severe ME/CFS patients going back to work after oxymatrine treatment (being able to work usually means either mild ME/CFS or remission). So that's a two or three-level improvement from oxymatrine. But other patients only get minor improvements on oxymatrine, and many (about 50%) do not respond at all to oxymatrine. There is always a spectrum of responses in any ME/CFS treatment, so you really need to hear quite a few accounts before you start to get a handle on how effective a treatment really is.

Ideally you would want a study done, but with ME/CFS patients being second class citizen's, nobody bothers to conduct studies on the ME/CFS treatments that have shown efficacy in doctor's clinics.

http://forums.phoenixrising.me/index.php?threads/my-experience-on-antiretrovirals.41074/

It's the same story all over again

It is exactly the same story, because @Ellkaye and @Hustler I think are the same person.

 

[IThinkImTurningJapanese]

If we take oxymatrine,

Sophora flavescens、（Oxymatrine)

Toxic effects from use of the root may include nausea, dizziness, vomiting, constipation, spasms, disturbance of speech, irregular breathing, respiratory failure and death[25].

Damn, and I'm considering asking my Doctor about this, now.

Ideally you would want a study done, but with ME/CFS patients being second class citizen's, nobody bothers to conduct studies on the ME/CFS treatments that have shown efficacy in doctor's clinics.

Thank you for compiling information the way you have. Maybe, we can find an answer anyway.

 

[patient.journey]

If there is only 2 people who did try this or three this is not the patients mistake ! It's the medical system issue !


Why we don't get ARV trials like ALs or MS ?

 

[Hip]

If there is only 2 people who did try this or three this is not the patients mistake ! It's the medical system issue !

Several doctors are using tenofovir (or have used it in the past): Dr John Chia, Dr Willian Weir, and originally Dr Jamie Deckoff-Jones (who prescribed tenofovir + raltegravir for both herself, her daughter Ali, and a few of her ME/CFS patients).


One thing of interest: in her blog, Dr Deckoff-Jones says that both her and her daughter Ali seem to improve on tenofovir 300mg once daily + raltegravir 400mg twice daily:

We both improved during the three years we took antiretrovirals, but we were doing lots of other things documented on this blog. Since there was always the possibility that we might do better without them, eventually we decided we should find out. As it turned out, we didn’t decline when we stopped.

So like @Keela Too's story earlier in this thread, it seems that some people are getting permanent improvements on these antiretrovirals, that remain even when treatments is discontinued. I think this is an encouraging aspect of antiretroviral treatment: the idea that after taking these drugs for a year or so, it leads to some permanent improvements.


It's also worth reading about the experiences of Dr Deckoff-Jones's ME/CFS patients treated with tenofovir + raltegravir:

My experience treating six very informed patients was similar to what other doctors have reported, 50% improved subjectively. Two had adverse reactions to Viread, including one who had responded initially; both resolved quickly when the drugs were stopped. Two patients continued long term, one on two drugs and one who opted for Viread monotherapy. I didn’t see anything dramatic enough to make me very encouraged though.

So Dr Deckoff-Jones observed improvements in both herself, her daughter and three of her patients — nothing really dramatic, but nevertheless there were improvements.



Dr William Weir had better results, reporting here that 3 of his ME/CFS patients recovered whilst given tenofovir (but he does not state what their pre-treatment level of ME/CFS was, mild, moderate or severe), and another 3 of his patients did not respond at all (even after 5 months of treatment).



Dr John Chia said he has treated around 35 patients with tenofovir but that it's still early for many of them and he will have more information soon on their response rate. He says that for patients tenofovir helps, the results are significant. However, Dr Chia says that so far, less than 1 in 3 of his patients have responded to tenofovir.

 

[Keela Too]

So like @Keela Too's story earlier in this thread, it seems that some people are getting permanent improvements on these antiretrovirals, that remain even when treatments is discontinued. I think this is an encouraging aspect of antiretroviral treatment: the idea that after taking these drugs for a year or so, it leads to some permanent improvements.
.

I think I'd call my improvement a "long-lasting" one rather than "permanent". I am realistic about the fact that this could just be a window of partial remission. I have had boths ups and downs during the time since I stopped Viread/Tenofovir. My ability now is substantially higher than it was in 2015 - when I could hardly function at all. However I have had dips that halved the gain for a period of time.... thankfully I'm currently not in a dip.... BUT I am very aware that my well-being is still ... what's the word? .... tentative?

 

[Jesse2233]

I have received word (albeit secondhand) that some of Dr Weir's patients moved from 20 on the Bell scale to 80-90 using tenofovir monotherapy for 6 months. He has said that getting them through the IRIS is the toughest part because he doesn't use steroids in the fear it will make them worse again