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

[Jesse2233]

The more I think about it, the more I think Fluge / Mella should do a pilot study of an ARV cocktail in their Rituximab / Cyclophosphamide non-responders. There may very well be an infectious / autoimmune split (30% infectious / 30% autoimmune / 40% something else?) and the non-responders would be a great place to start testing that possibility.

That Dr Chia, Dr Weir, and Dr Deckoff-Jones have all independently reported benefit (and in some cases full recovery) from ARVs is significant and should not be ignored.

These ARV cocktails are relatively cheap and low risk to try (vs something like rituximab or IVIG, both of which costs $10-50k and can be fatal).

Imagine how many people could be potentially restored to the workforce if doctors just tried a cocktail in well informed and willing patients.

 

[patient.journey]

Man wouldn't it be great if Dr Weir, Dr Chia, Dr Nath, Ron Davis, and Ian Lipkin could all get in a room together and discuss this.

Without lipkin my friend ! Without this guy

 

[fingers2022]

@ Keela Too
I hope you don't mind if I ask if you tried antivirals first since quite a few people in UK are using them. I have only just got to hear of tenofovir. Do you know what is the determinant of whether your doctor sends you down the antiviral route or tenofovir.

I am in 6th month of treatment with Dr Bansal on acyclovir. May be beginning to see some improvement but I have been diagnosed as needing a mitral valve repair which is contributing to symptoms so it's difficult to estimate.

Aggressive rest is all that's possible for me at the moment.

I am glad you have achieved some improvement Sally. I wondered what your treatment was when I read your blog. I have a lot of reading to do to get to grips with this thread. Hope you continue to see improvement.

Hi Binkie, welcome to the thread. Some good learning for me here (thanks folks!), hope you find likewise.

I couldn't help smiling at your question in bold above. Personally, I've tried both public (NHS) and private (Dr.Weir) routes to anti(retro)viral therapy for ME. I drew a blank on both. 'Not in NICE guidelines' is the response from the former, whilst Dr.Weir is concerned about ethics given that some people regress on ART...fair enough, just wish we could have had the discussion via email before I trecked from Cornwall to Harley Street, incurring travel and accommodation costs as well as getting more knackered.
So, that leaves us with DIY routes - it is not doctors who 'determine' the course of treatment in ME, it is the patient. The science will not get there in our lifetimes so we have little choice but to experiment. Fortunately for me, I discovered via personal connections that we can get hold of the drugs online without prescription.

Fortune might favour the brave...who knows?

 

[Binkie4]

Thanks @fingers

I think I've read on here that Dr Weir prescribes tenofovir and has achieved some success.i wonder why he wouldn't prescribe it for you?

 

[Keela Too]

@Binkie4 This was suggested to me by a friend, and the concept of a retro-viral background to ME made sense to me - so I went with my gut feeling and took it. I went in with my eyes wide open. I was obviously one of the lucky ones.

 

[fingers2022]

Thanks @fingers

I think I've read on here that Dr Weir prescribes tenofovir and has achieved some success.i wonder why he wouldn't prescribe it for you?

Think you'll find it is prescribed. My understanding from my consultation (and as noted in my previous post) is that he has stopped due to mixed results. This can happen with any treatment, but I respect this decision given that it is off-label. So tragic that patients and well-meaning physicians are left in this situation.

 

[fingers2022]

@Binkie4 This was suggested to me by a friend, and the concept of a retro-viral background to ME made sense to me - so I went with my gut feeling and took it. I went in with my eyes wide open. I was obviously one of the lucky ones.

And we've also learnt from discussions here that the anti-inflammatory action of Tenofovir in reducing cytokine levels independently of any antiretroviral action might be another reason to try it.

 

[Keela Too]

And we've also learnt from discussions here that the anti-inflammatory action of Tenofovir in reducing cytokine levels independently of any antiretroviral action might be another reason to try it.

Yes - although it was only after taking it that I became aware of it's alternative possible mode of action.

 

[fingers2022]

The more I look at this, the more crazy it seems...(Bell)

=======================================================================
100: No symptoms with exercise. Normal overall activity. Able to work or do house/home work full time with no difficulty.

90: No symptoms at rest. Mild symptoms with physical activity. Normal overall activity level. Able to work full time without difficulty.

80: Mild symptoms at rest. Symptoms worsened by exertion. Minimal activity restriction needed for activities requiring exertion only. Able to work full time with difficulty in jobs requiring exertion.

70: Mild symptoms at rest. Some daily activity limitation clearly noted. Overall functioning close to 90% of expected except for activities requiring exertion. Able to work/do housework full time with difficulty. Needs to rest in day.

60: Mild to moderate symptoms at rest. Daily activity limitation clearly noted. Overall functioning 70% to 90%. Unable to work full time in jobs requiring physical labour (including just standing), but able to work full time in light activity (sitting) if hours are flexible.

50: Moderate symptoms at rest. Moderate to severe symptoms with exercise or activity; overall activity level reduced to 70% of expected. Unable to perform strenuous duties, but able to perform light duty or deskwork 4 - 5 hours a day, but requires rest periods. Has to rest/sleep 1-2 hours daily.

40: Moderate symptoms at rest. Moderate to severe symptoms with exercise or activity. Overall activity level reduced to 50-70% of expected. Able to go out once or twice a week. Unable to perform strenuous duties. Able to work sitting down at home 3-4 hours a day, but requires rest periods.

30: Moderate to severe symptoms at rest. Severe symptoms with any exercise. Overall activity level reduced to 50% of expected. Usually confined to house. Unable to perform any strenuous tasks. Able to perform deskwork 2-3 hours a day, but requires rest periods.

20: Moderate to severe symptoms at rest. Unable to perform strenuous activity. Overall activity 30-50% of expected. Unable to leave house except rarely. Confined to bed most of day. Unable to concentrate for more than 1 hour a day.

10: Severe symptoms at rest. Bed ridden the majority of the time. No travel outside of the house. Marked cognitive symptoms preventing concentration.

0: Severe symptoms on a continuous basis. Bed ridden constantly, unable to care for self.

========================================================================
At level 20, someone can be doing half of what they did pre-ME, yet they are confined to bed most of day!
Personally, I'm doing 25% of pre-ME activity (can't sustain any more), yet I'm doing 40-odd mile bike rides at a reasonable lick. I have detailed records of my activity going back to 1980, became ill 1991. What level would I be at?

Hang on, level 70 says '90% of expected except for activities requiring exertion' ... so no-one is expected to exert themselves? WTF does 'exertion' mean - hell that is such a scientific term!

This is just one example of some quack purporting to know something about ME, fatigue, physiology, science... Also, it highlights that we can't measure improvement subjectively (and certainly not at this level of non-rigour). Equally, physical performance measures don't completely cut the mustard. This would need to be resolved before any trial, otherwise we'd have another PACE debacle.

 

[ukxmrv]

The more I look at this, the more crazy it seems...(Bell)

=======================================

This is just one example of some quack purporting to know something about ME, fatigue, physiology, science... Also, it highlights that we can't measure improvement subjectively (and certainly not at this level of non-rigour). Equally, physical performance measures don't completely cut the mustard. This would need to be resolved before any trial, otherwise we'd have another PACE debacle.

I'm guessing you haven't been to any talks by Dr Bell when he has visited the UK?

http://me-pedia.org/wiki/David_Bell

 

[fingers2022]

@ukxmrv thanks.
The link is wrong, but got there in the end. Which part of the ME-paedia entry are you directing me to?
And, no, I can't say that I've ever been particularly motivated to attend any talks by anyone on the subject. Have I missed much?

 

[ukxmrv]

@ukxmrv thanks.
The link is wrong, but got there in the end. Which part of the ME-paedia entry are you directing me to?
And, no, I can't say that I've ever been particularly motivated to attend any talks by anyone on the subject. Have I missed much?

Sorry about the link not working. Fixed now.

Dr Bell has had a long involvement with CFS in the USA and been to the UK a few times. I've met him here.

You can probably track him down and ask him questions if you want to follow this up. I've had some correspondence with him in the past but don't know his current email address.

 

[heapsreal]

And we've also learnt from discussions here that the anti-inflammatory action of Tenofovir in reducing cytokine levels independently of any antiretroviral action might be another reason to try it.

It changes the cytokines in a way that it helps turn the immune system on to fight infections. Below a copy and paste of the paragraph of one of my previous articles posted.

Tenofovir also appeared to keep the balance of IL-12 and IL-10 stable. The drug enhanced the IL-12 levels, thus increasing their ability to respond to other infectious pathogens, and it kept IL-10 levels low, thus keeping the body from putting the brakes on the immune response.

 

[heapsreal]

It changes the cytokines in a way that it helps turn the immune system on to fight infections. Below a copy and paste of the paragraph of one of my previous articles posted.

Tenofovir also appeared to keep the balance of IL-12 and IL-10 stable. The drug enhanced the IL-12 levels, thus increasing their ability to respond to other infectious pathogens, and it kept IL-10 levels low, thus keeping the body from putting the brakes on the immune response.

Below from Wikipedia
IL-12 is involved in the differentiation of naive T cells into Th1 cells.[2] It is known as a T cell-stimulating factor, which can stimulate the growth and function of T cells. It stimulates the production of interferon-gamma (IFN-γ) and tumor necrosis factor-alpha (TNF-α) from T cells and natural killer (NK) cells, and reduces IL-4 mediated suppression of IFN-γ. T cells that produce IL-12 have a coreceptor, CD30, which is associated with IL-12 activity.


IL-12 plays an important role in the activities of natural killer cells and T lymphocytes. IL-12 mediates enhancement of the cytotoxic activity of NK cells and CD8+ cytotoxic T lymphocytes.There also seems to be a link between IL-2 and the signal transduction of IL-12 in NK cells. IL-2 stimulates the expression of two IL-12 receptors, IL-12R-β1 and IL-12R-β2, maintaining the expression of a critical protein involved in IL-12 signaling in NK cells. Enhanced functional response is demonstrated by IFN-γ production and killing of target cells.

 

[heapsreal]

IL-12 mediates enhancement of the cytotoxic activity of NK cells and CD8+ cytotoxic T lymphocytes.

These improvements in nk and cd8 t lymphocytes from tenofovir correlates with findings by Australia's griffith university which shows poor nk and cd8 function in cfsme.

Poor nk and cd8 t cells can leave cfsers open to infections. This could explain why multiple different infections have been implicated in cfsme. I also believe that medicine isnt very good at detecting infections unless very new or is extremely overt and causes sepsis, low grade chronic infections are rarely detected.

Id like to see more research on how tenofovir can improve nk function and cd8 t cells in cfs patients. I think current finding lend tenofovir to being more of an immune modulator IL12 and th1 stimulator with anti inflammatory effects, maybe directly by reducing infectious load or indirectly through changing cytokines, plus tenofovir is an antiretroviral??

 

[fingers2022]

Where to next? Wessely leading UK government mental health review?
I suppose anyone taking ARVs for ME must be totally mental, yes?

 

[Stretched]

Here’s a current article, helpful on Retroviruses by none other than Judy Mikovits, PhD; with a link to her original work on the XMRV publication:
https://worldmercuryproject.org/news/retroviruses-poorly-understood-agents-of-change/

 

[fingers2022]

Here’s a current article, helpful on Retroviruses by none other than Judy Mikovits, PhD; with a link to her original work on the XMRV publication:
https://worldmercuryproject.org/news/retroviruses-poorly-understood-agents-of-change/

She is one clever lady, and, unlike some of the other 'researchers' I happen to trust her. As she says, it's daunting, but hey I'm happy that she's looking into it all. It intrigues me why the likes of Lipkin seem to feel threatened by her. I guess it's because she is so much smarter than they are and doesn't have ulterior motives like they do. I would love to hear Lipkin respond to that. I know that some of you here seem to support him. Anyone know him? If you do, get him to respond - come on, let's shake this f...ing thing up before we die.

 

[Stretched]

She is one clever lady, and, unlike some of the other 'researchers' I happen to trust her... .

Likewise, agreed. The more I read on her research and from her recent book Plague, the more I’m in the Retroviruses camp. Dang, her work has been right on. Check out the last couple of sentences in the above reference, specifically

We extend Dr. Tenpenny’s alarming questions with knowledge of another family of exogenous human retroviruses, the murine related retroviruses which have now been confirmed in more than 6% of Americans and most likely entered humans via vaccines, and a contaminated blood supply causing the very diseases Dr. Stuart hypothesized. We ask, “Can the MMR vaccine containing avian/chicken retroviruses recombine with mouse sequences passed down from our parents (found in their polio vaccines) to produce a hybrid retrovirus or hybrid sequences?

Are we altering the genes of future generations in unknown ways through vaccines?

What’s coming through that needle can, indeed, be deadly.

My note: ...6% of Americans sure gets close to an oft-referenced, fanciful 20 million number, and that’s without all the statistical adjustments and non-reporting... .

 

[Max80]

I've been on tenofovir daily since 2008. I developed ME in 2014, so I have been on tenofovir throughout the whole of my ME. It has not made any difference (good or bad) for my ME symptoms, and I have no side effects from it.