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Tenofovir Alafenamide anyone?

godlovesatrier

Senior Member
Messages
2,513
Location
United Kingdom
Turns out IP modulates pro-inflammatory cytokines "up" so that might explain why Inosine makes people feel like shite.

As for the tenofovir I haven't tried taking it again. The worsening of general function didn't seem like a good omen. Think my focus now will be valtrex, reishi mushroom and Inosine pranobex.
 

godlovesatrier

Senior Member
Messages
2,513
Location
United Kingdom
Hey guys,

Been thinking a lot lately about combinations of drugs because of the issue with EBV causing cortisol levels to go high in an attempt to control inflammation which ebv hijacks to further proliferate causing a never ending cycle until the patient has full blown mono and ends up in hospital. This seems to be unique to maybe less than 1% of people.

I was thinking anyway, if the immune system needs to be stimulated to best kill the viruses (I haven't actually got any hard evidence for this just theory) then maybe Imunovir and TAF combined would be better, with a strong anti inflamatory. I guess the drug choice might be celebrex but it's too nasty on the stomach, so I am going to try trans dermal curcumin (THC) which should work just as well from b12oils.com.

I am not suggesting anyone try this or that I am going to try it!

At any rate I have been in a right mess lately, I had the bacillus crash which was a terrible reactivation, then I had a nasty cold which slowed everything down and then I had the booster reactivations. So I am like a viral ME soup right now. Took Imunovir on Friday and felt like sh**. Everything seemed to broadly reactivate and I got stuck back in a cortisol cascade.
As I don't have any valtrex I took TAF on Sunday morning about 4am and when I woke up I felt a lot better. I was also able to sleep after taking TAF and my mood has improved from depressed to quite happy and I feel way more energetic.

So I therefore believe it does work. But sadly it does seem to induce neutropenia, there's no way to really explain my gum abscess or my wisdom tooth being extracted on Day 6 (when I stopped TAF).

Imunovir modulates neutrophils and macrophages, so in theory that would stop neutropenia. Just a theory of course :)
 

fingers2022

Senior Member
Messages
425
Hey guys,

Been thinking a lot lately about combinations of drugs
My experience and hunch is that I need to add another RV to my Tenofovir-Emitricitabine combo. I think Bictegravir looks most promising, and Biktarvy is a combo of all 3 of these, so would be ideal. Problem is I can't get this without prescription and can't find a doc who will write me one. It seems you're better off in UK having HIV than ME.
 

fingers2022

Senior Member
Messages
425
Why do you think that would help? What's the reasoning?
There is also a paper recommending Biktarvy as a better choice for PrEP, but I think the insurance companies are blocking its use for this...don't quote me on that. If it were licensed for PrEP we could get it without prescription...bananas.
 

godlovesatrier

Senior Member
Messages
2,513
Location
United Kingdom
Do you have long covid or ME? Not that it matters there the same anyway. But just wondering why you've gone with RNA based antivirals. I'm not suggesting they don't work! I have a feeling they work just as well. But just wondering why you feel they might work best for you. Thanks.

I've continued with TAF today and I feel ok. I do feel a bit wired tho and am concerned this is me infected with covid. As my gf is currently in bed with it right now. Also last night I had to take famotidine becuase I awoke at 4am unable to sleep.
 

fingers2022

Senior Member
Messages
425
Do you have long covid or ME? Not that it matters there the same anyway. But just wondering why you've gone with RNA based antivirals. I'm not suggesting they don't work! I have a feeling they work just as well. But just wondering why you feel they might work best for you. Thanks.

I've continued with TAF today and I feel ok. I do feel a bit wired tho and am concerned this is me infected with covid. As my gf is currently in bed with it right now. Also last night I had to take famotidine becuase I awoke at 4am unable to sleep.
I've had ME for 31 years.
Tried everything.
A contact and now good friend of mine experimented with ART after legend Judy Mikovits's RV research around 2008. He says he is now cured and is off meds completely. I believe him...he is a very switched on guy.
I have followed his lead and taken ART since 2017...I qualified for world age group duathlon and triathlon champs this year...I'm nearly 65...looking at podium in both.
The thing is that I still have symptoms, so it's a big challenge...headaches, malaise, cramps, peripheral neuropathy...frequent colds, sore throats, loads of mucous from every orrifice...upper end lol! I have to modulate my training to fit in with being ill...but pre-ME I was an elite triathlete, so it puts iot into perspective...I am still quite good with a monkey on my back if that makes sense.
 

godlovesatrier

Senior Member
Messages
2,513
Location
United Kingdom
Where are you now on the EIPS scale?

You appear to be in remission to me, Working full time and also exercising (beyond what most people would be able to do)? Let me know if I have that correct.

Does this contact live in France by any chance? Might be the same person I spoke to.

Can you explain what drugs you took or start a new thread and explain it or signpost me to the thread that has teh info please? It would be nice to know how many years on ART, when it started to work, which symptoms disappeared, which symptoms you still deal with and what your life looks like now compared to before you started.

TAF update:

I'm taking 12.5mg before bed at the moment. It's very hard to explain but it does appear to be working as a lot of the symptoms I was having before I started have gone. Depression, brainfog (due to viral reactivation post booster). However as I have covid and I am fighting it off, I am not getting the full picture. According to a researcher I follow on twitter called Daniel Dugger TAF does not cross the BBB well and isn't any good at blocking SARS-COV2. However there's speculative evidence (two studies) that tenofovir does help with covid.

I'll report back but it's my hope that I can contine with the TAF because the side effects and cost are all amazing compared to valtrex. I need to review this thread to see which viruses it hits!
 

fingers2022

Senior Member
Messages
425
Where are you now on the EIPS scale?

EIPS irrelavent. I would score as 'normal' both before and after ART. The scale is all about function and nothing about how unwell you feel. My 'normal' is not the same as most folks' 'normal'.

You appear to be in remission to me, Working full time and also exercising (beyond what most people would be able to do)? Let me know if I have that correct.

If that is your definition of remission, then yes. If remission doesn't include modifying or limiting what you do because you aren't well enough, then no. For example my fellow triathletes and competitors train at volumes about 4 or 5 times what I do. I'm 65 in a few months time, they are similar ages. Many 'healthy' 20 year olds can't get anywhere near us.

If you have any doubt whether I have ME, you could maybe ask yourself why I am on this forum after having it for 31 years.? Why am I still interested? Why am I still trying to get some research going, and why do I keep putting the message out. I am not claiming recovery, nor am I selling anything.

Does this contact live in France by any chance? Might be the same person I spoke to.

Could well be.

Can you explain what drugs you took or start a new thread and explain it or signpost me to the thread that has teh info please? It would be nice to know how many years on ART, when it started to work, which symptoms disappeared, which symptoms you still deal with and what your life looks like now compared to before you started.

Think I posted above somewhere, but simply, I can only get PrEP, i.e. combo of Tenofovir Dysproxil and Emitricitabine (Tavin-EM). I did manage to buy some Raltegravir without prescription a few years back. Can't be sure it made much difference as my improvements are mostly subjective except for my training and performance data. It was quite a bit more expensive too. Been taking for 5 years and a bit. Improvement kicked in after 16 weeks (as documented by others), seemed to plateau afetr about 6 months. Have had a couple of breaks and deteriorated both times.

TAF update:

TAF? The newer form of Tenofovir? I take mine in the morning pretty much first thing with some high dose vit C. Lol, no particular rhyme or reason to timing or the vit C!

I'm taking 12.5mg before bed at the moment. It's very hard to explain but it does appear to be working as a lot of the symptoms I was having before I started have gone. Depression, brainfog (due to viral reactivation post booster). However as I have covid and I am fighting it off, I am not getting the full picture. According to a researcher I follow on twitter called Daniel Dugger TAF does not cross the BBB well and isn't any good at blocking SARS-COV2. However there's speculative evidence (two studies) that tenofovir does help with covid.

My symptoms of headache, dizziness, peripheral neuropathy, sore throats, swollen lymph glands, post exertional malaise have either eased a bit or not at all. My big improvement is recovery, energy levels and capacity for work (which is the definition of energy in physics - a tractor with a flat tyre could probably still pull a heavy trailer).

I'll report back but it's my hope that I can contine with the TAF because the side effects and cost are all amazing compared to valtrex. I need to review this thread to see which viruses it hits!

Cost-effective for sure, which viruses, who knows, need some decent research. My research proposal is to test efficacy then test mechanistic hypotheses.
 

godlovesatrier

Senior Member
Messages
2,513
Location
United Kingdom
Sure I wasn't calling into question your ME diagnosis btw. I was just genuiely interested to get more info as it better serves anyone else who sees it in the future.

As for ART in general, it's unclear why it works, Dr Chia and Dr Weir can't figure it out, but 33% of patients seeing big improvements means it's got to be one of the best things to give a go.
 

fingers2022

Senior Member
Messages
425
Sure I wasn't calling into question your ME diagnosis btw. I was just genuiely interested to get more info as it better serves anyone else who sees it in the future.

As for ART in general, it's unclear why it works, Dr Chia and Dr Weir can't figure it out, but 33% of patients seeing big improvements means it's got to be one of the best things to give a go.
Yes, sorry didn't think you were questioning that and not sure why I felt the need to explain!

Exactly, that is why I am proposing a study which firsts tests efficacy then tests mechanistic hypotheses. Indeed it seems that NIHR in UK have a funding stream targeting projects designed like this. There is also a lot of sense, and quite a bit of history, in drug repurposing. AZT was the first AIDS drug and previously used in cancer. Not sure Big Pharma likes the approach though.
 

godlovesatrier

Senior Member
Messages
2,513
Location
United Kingdom
Really good summary here for anyone that wants it. Diff between tenofovir and TAF, this is mainly a discussion around it's ability to help with covid19 but it explains how they both differ greatly:

The absence of positive signal between tenofovir alafenamide treatment[ [19], [21]] and COVID-19 outcome is intriguing because tenofovir disoproxil fumarate and tenofovir alafemanide both yield to the same active compound, namely tenofovir. While the former concentrates in plasma, the latter concentrates in the cells, in particular lymphatic cells [[34]].

These pharmacokinetics differences may provide an advantage for tenofovir disoproxil fumarate in reaching SARS-CoV-2 infected cells, in particular the endothelium [[35]] and highly vascularized organs such as the kidneys or the lungs. Tenofovir disoproxil fumarate and tenofovir alafenamide have a very different lipid metabolism and lipids play a fundamental role in viral replication [[36]].

Finally, tenofovir disoproxil fumarate has immunomodulatory effects[ [37], [38]], which could be of importance in limiting the cytokine storm during the second week of COVID-19, known as the "inflammatory" phase of the disease. For example, the administration of tenofovir disoproxil fumarate plus emtricitabine for 30 days was associated with a significant decrease of HLA-DR+ CD38+ co-expression on CD8+ T-cells, a marker of immune activation amongst 19 healthy volunteers [[39]]. Of note, HLA-DR+ CD38+ co-expression on CD8+ T-cells was significantly associated with COVID-19 severity in a cohort of 125 COVID-19 patients [[40]].

Therefore makes me think we'd only see benefits if we took PreP @heapsreal due to the above immune modulation which might be potentially highly advantegous in some ME patients.

I'm going downhill a bit with my own covid infection, I can't say that TAF has helped me much, I do feel worse after taking it but I can't see how that's a good thing really so I am stopping today.
 

fingers2022

Senior Member
Messages
425
Really good summary here for anyone that wants it. Diff between tenofovir and TAF, this is mainly a discussion around it's ability to help with covid19 but it explains how they both differ greatly:



Therefore makes me think we'd only see benefits if we took PreP @heapsreal due to the above immune modulation which might be potentially highly advantegous in some ME patients.

I'm going downhill a bit with my own covid infection, I can't say that TAF has helped me much, I do feel worse after taking it but I can't see how that's a good thing really so I am stopping today.
Interesting...do you have link to original or the reference?
 

Shanti1

Administrator
Messages
3,089
I've taken some glycine and sodium benzoate which had a dramatic effect on my muscles. I can only assume that ammonia levels were high due to crash??

@godlovesatrier would you mind sharing a little more on your use of sodium benzoate?
  • How much do you typically take at a time and how long between when you take it the beneficial effect?
  • Out of curiosity, have you ever had your ammonia levels checked?
  • Do you think that lowering ammonia is its only MOA?
I just got some to try :) Thank you!
 

fingers2022

Senior Member
Messages
425
Any updates @fingers2022?

...or anyone who is using these.

:)
Hi Judee
I have literally one hour ago just got back to UK from Ibiza, Balearic Islands, Spain. I went to take part in the World Sprint Duathlon Championships. I competed in the 65-69 category ...I was 65 imn February this year. This is the first championship event I have done as I had many years out of multisport/triathlon due to ME. However, the ART from 2018 allowed me to start traing half seriuosly again and even competing at a good level in my age group. I know that I do far less training than my competitors (I can see thios on Strava), as the ME restricts the volume I can do, and my recovery is not what it might be...but the ART has improved this. I still get payback every time I reain/exercise...I feel quite unwell, but I take this as a reasonable bargain for how good it otherwise makes me feel and I still get all the other health benefits of exercise, my body adapts to training as normal. I cam ein 5th place, only 2 mins behind the winner, and I was 3rd Brit, so I automatically quallify for next year in Townsville Australia.
Now many may say it's impossible for me to have ME and perform at this level (even at 65 it is not slow! 19mins for 5km run, 30 mins for 20km cycle, then another 2.5km run at same pace, all back to back). All I can say is that you or anyone asks me the usual questions about symptoms and the course of my illness. On my return to UK I have a sore throat and will probably go through a viral cycle for 3 weeks now...par for the course.