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

[Gzephyr]

Am on day 5 of 300mg Tenofovir (TDF) for chronic EBV. Feeling a mild immune response similar to when I come off my valacyclovir and get a viral flare. It’s been around the same severity for several days so I don’t think I’ll go into a full on flare. I’m slightly fatigued but it’s not really PEM. I have a good bit of extra physical energy than normal. Could be a coincidence but that seems unlikely.

 

[Forummember9922]

Am on day 5 of 300mg Tenofovir (TDF) for chronic EBV. Feeling a mild immune response similar to when I come off my valacyclovir and get a viral flare. It’s been around the same severity for several days so I don’t think I’ll go into a full on flare. I’m slightly fatigued but it’s not really PEM. I have a good bit of extra physical energy than normal. Could be a coincidence but that seems unlikely.

May I request an update on your experience ?

 

[fingers2022]

I did 3 months of Biktarvy - early June to early September. Ran out and have been totally meds free since. Up until the last couple of weeks, I've been pretty good, not clear of PEM, but with excellent energy levels, allowing me to train (triathlon - short distances, not what i did pre ME, but still pretty good and a good performance level for age - 65). Last few weeks there has been a circulating upper respiratory virus in SW England, and lots of my acquaintances have/had it. It seems to be taking 4 weeks, I am 3 weeks in, but still training with rest days.
All very anecdotal and experimental, but I think I am in a much better place having taken meds than if not. I took PrEP from 2017 up to this recent Biktarvy trial. If you are in reasonable shape and want a better quality of life I would say give it a go. I have had no side effects I am aware of.
I am in daily contact with the amazing gentleman who is kinda the subject of this thread. He has been my inspiration and support. He is now cured and on no medication, enjoying life after many dark years. I can vouch for this.
Best wishes everyone, Steve

 

[fingers2022]

How long before you started noticing improvement? And how fast before side effects diminished? I'm not using it now...just thinking about purchasing so far.

https://www.inhousepharmacy.vu/p-99900828-taffic-tablets.aspx (but expensive )

Thanks, I got Biktarvy from here. Yes not cheap, but not crazy expensive for a 3 month trial.
When I first took PrEP, it took 16 weeks before improvement...I didn't know beforehand, but this is the period consistently reported by others. I didn't get side effects at any point.

 

[godlovesatrier]

Sorry old thread but you said something years ago Hip about Tenofovir possibly inducing IL-10 well I researched this awhile back, tenofovir does immune modulate cytokines, which explains partly why they make me feel like shite. But I think most of the reason why TAF made me feel ill is because I was responding to it. I had to stop it though because I got an abscess in my mouth and my stool turned black and I was very concerned something was a miss. If I do it again it'll hopefully be under a drs supervision and for a six month trial.

If we look at this from an enterovirus perspective, then perhaps by inducing IL-10, tenofovir might have eliminated enterovirus from some crucial tissues such as the brain or spleen, and even though the infection is not fully eradicated, its grip on the body is now less.

But I personally feel like it might actually work for me. As I got on well with valtrex and Molnupivarir knocks out something that causes my physical fatigue but I now have symptoms of long covid ontop of whatever I had before which masks the improvements. I know tenofovir doesn't work for LC though so maybe I've missed the boat.

Anyway immune modulation is definitely a thing with these drugs.