Tenofovir Alafenamide anyone?

[godlovesatrier]

Today much better than yesterday. Eyes are working again. Brain fog much better. Weirdly I am experiencing muscle fatigue and some muscle pain today from the early hours. Which is weird.

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??

Anyway sore throats been gone now for about 48 hours. Am going to persevere in case I'm looking to quit too soon and chalk this dramatic worsening up to a bad crash. Also going to take it easy tonight. As I have done a lot since Saturday when I basically started the TAF.

 

[godlovesatrier]

Sadly I've got what feels like an abscess forming under my gum above my old wisdom tooth. Think I damaged the gum recently but I really don't know how.

Anyway my level of function is still pretty poor I'm at 60% and have been for 7 days. The issue is that normally I'm at 75%. Symptoms that have improved on taf are really my sore throat, everything else is worse since Tuesday.

Bottom line is brainfog is bad and it's difficult to concentrate and work. Which is always my problem. So I've got to stop the treatment. I think this is another treatment I'd return to in the future if I ended up unable to work. But I still worry time is of the essence with viruses.

I don't feel better after dosing either. Just much worse function for several hours.

Did you experience this on the drug @Shanti1 ?

I know heapsreal has had zero side effects. I guess some people might suggest I'm a responder to the drug which is annoying. But I've also read that patients have more neurological side effects from TAF than viread. So maybe that explains it. It's annoying to stop something but don't think I have much choice really.

 

[Shanti1]

Anyway my level of function is still pretty poor I'm at 60% and have been for 7 days. The issue is that normally I'm at 75%. Symptoms that have improved on taf are really my sore throat, everything else is worse since Tuesday.

Any change in your lymph node swelling?

Bottom line is brainfog is bad and it's difficult to concentrate and work. Which is always my problem. So I've got to stop the treatment. I think this is another treatment I'd return to in the future if I ended up unable to work. But I still worry time is of the essence with viruses.

I am also still working (from home). A drop in function, especially cognitive function, is also something I am not willing to endure for long. Just can't afford it. I suppose if I were fairly certain I would come out ahead in a few weeks I would endure it, but it is hard to know with TAF. Somehow with the Valacyclovir, I knew I would be better for enduring, I could feel it in my body.

I don't feel better after dosing either. Just much worse function for several hours.

Did you experience this on the drug @Shanti1 ?

I didn't want to take TAF before work, so I took it before bed to "sleep it off". I know I woke up worse.
I have been experimenting with a couple of other meds lately, but mean to get back to TAF soon. I will post here how it goes once I start taking it again.

 

[godlovesatrier]

So my lymph nodes did go up early on in response to TAF. But then came down and are fine now. There only very slightly swollen.

I just took some andrographis and nattokinase and haven't experienced a herx. Which makes me think the TAF is a very strong immune modulator. But the brainfog is still very bad like I just feel dizzy and it's much harder to focus.

Valac doesn't induce brainfog anymore. And famvir brainfog is very mild now. I guess those symptoms got better after a month of use. But as you say the data for TAF is thin on the ground

Interesting you felt worse. I feel worse if I take it before bed. But if I take it at 5pm I feel less crap when I get up. It's so frustrating because as you say it might work but when you're still working you can't endure a drop in cognitive function for long. Hoping my brainfog calms down tomorrow.

 

[godlovesatrier]

Just a thought too. This gum swelling is really bad. Even part of ym cheeks swollen. Wondering if I've got a bacterial infection now and that might explain the worsened brainfog since Wednesday. I felt great on Tuesday.

Thankfully I've got some antibiotics so I think I'll take a short course and see if my symptoms improve + gum swelling goes down as it's pretty bad I can't close my jaw a the moment. Seeing a dentist tomorrow as luck would have it but they won't give me antibiotics I expect.

Anyway just a theory but I wonder if my immune system has whacked the viruses but due to imbalance has allowed bacteria to multiply. Which might explain brainfog too or it might not.

I've driven ten minutes tonight to the train station and feel wiped out and weak. Hopefully some oat bran, egcg, glycine and benzoate and abx will sort me out. The gum issue feels like it could turn into an abscess.

 

[Shanti1]

@godlovesatrier @heapsreal
I took 1mg of TAF yesterday morning and felt ok during the day. My sleep time was increased from about 8.5 to 9.5 hours and my sleep was very heavy, hard to wake from. I think this is a med side effect, not a viral recognition/clearance reaction. I'm doubtful I will be able to tolerate TAF at therapeutic doses, but I'm going to experiment with it for a bit.

I think my EBV symptoms were largely caused by actively lytic EBV since they mostly resolved with valacyclovir. Apart from the lytic phase, EBV also has a "Abortive-lytic phase" through which it causes symptoms in infectious mono, and likely in ME/CFS. In this phase, viral DNA is transcribed into RNA and then the RNA is translated into viral proteins but it is an incomplete set of viral proteins and the viral DNA is not replicated by viral DNA polymerase, so you never get the formation of complete virions, just their evil proteins.

Valacyclovir, TAF, and Valganciclovir act as nucleotide analogs to halt DNA replication by DNA polymerase (TAF is best known as a reverse transcriptase inhibitor, but in the case of EBV it targets DNA polymerase), but they don't stop the DNA to RNA transcription mediated by RNA polymerase. So EBV in the abortive-lytic state can still make viral proteins that negatively modulate the immune system and incite inflammation.

From my understanding, a DNA-dependent RNA Polymerase inhibitor (DdRP) (DNA-dependent means the polymerase transcribes from DNA to RNA, as opposed to RNA to RNA) is what could stop the abortive-lytic phase, unfortunately, our cells use DdRPs for all mRNA production, so that type of antiviral is not practical.

Next best option for abortive-lytic IMO is to support viral immune recognition and Th1 function.

 

[DrUniverse]

Damn that Thread exploded
Tomorrow i will be part of the TAF Crew.

Thanks for posting your experience, very helpful!

 

[godlovesatrier]

Hey guys,

Sorry to hear Shanti. It might work but the effects became overpowering for me. My baseline isn't great now due to some antibiotics I've taken but it's still better than it was when I was on TAF. Which is saying something.

So yeah I did return to an ok place after stopping TAF but 3 days of abx and now some kefir I took yesterday have healed my gut but given me terrible brainfog. I can't win.

I don't feel like I lost anything by trying the TAF.

Good luck to you both.

 

[DrUniverse]

Damn you all sound not that happy.
So im sure i have only highly active ebv im really excited how it will impact.

 

[godlovesatrier]

Tbh my sore throat has vanished since I took TAF and I've yet to have it come back.

I'd say thats what it worked on and I think my sore throat is ebv causative to yeah...it should work for you.

 

[DrUniverse]

The study said even after removing TAF from the cells EBV was inhibited 72h post washout.

 

[DrUniverse]

@Shanti1 May i ask, do you think you have "only" active ebv?

@godlovesatrier Do you think you have other viral issues beside ebv ?

So for all of us valaciclovir helps to some point.

You all used the Tafero from alldaychemist ?

 

[godlovesatrier]

Can't say still waiting for my cmv blood tests. But so far just ebv based on testing

 

[Shanti1]

May i ask, do you think you have "only" active ebv?

Hi DrUniverse! Yes, I think active lytic was the primary problem for me because my EBV symptoms almost completely cleared with valacyclovir (brain fog, swollen lymph nodes, sore throat), I can still get breakthrough symptoms, which is why I wanted to try TAF. As far as I know, I do not have other viral involvement.

I still have fatigue, dysautonomia, and orthostatic hypotension left, but I don't think those are caused by active lytic EBV.

 

[godlovesatrier]

Oh and in my case I think I do have a secondary infection. Possibly bacterial but I've never found it and am still getting various tests to rule out infections.

 

[godlovesatrier]

Ok I just got my cmv titers back. Igg of 105. That seems like an active infection according to Dr Lerner. So looks like I have that going on and confirmed at least.

 

[DrUniverse]

Finally i took my first 1mg. Let's see what happens

So in your case @godlovesatrier Valcyte / Valganciclovir would be the best?! For cmv ebv
Damn but its like you have to sell a kidney to afford it

 

[DrUniverse]

And @Shanti1 so your nearly symtomp free and can live a near normal Life with valaciclovir?
What is your maintenance Dose?

 

[godlovesatrier]

Yay.

Famvir might work too. Famvir supposedly hits them all! But I don't think it hits ebv very hard.

I took 1g famvir on sat morning. Herxed all day long due to the intracellular half-life being 11 hours T that dosage. Felt better for it the next day. Hard to tell if this was a coincidence or not but I slept a lot on Saturday but did loads of Sunday.

Bare in mind I've taken famvir/valtrex for 2 months earlier in the year so viral load is probably more controlled. But I think for some unknown reason my viral load went up recently.

 

[Shanti1]

And @Shanti1 so your nearly symtomp free and can live a near normal Life with valaciclovir?
What is your maintenance Dose?

So after a year on valacyclovir and with the use of B1 and a few off label meds, my ME/CFS picture completely changed. Brain fog, severe cognitive impairment, lymphadenopathy, extreme thirst, and sore throat used to be my main symptoms. Now I never to rarely have these.

Now I have a new set of symptoms, primarily rotating around orthostatic hypotension/intolerance. The medication droxidopa has done wonders for me and I can now sit up without trouble as long as I also use compression. Standing and walking for too long are still problematic.

My maintenance dose for valaciclovir is 1g three times per day. I have tried to drop to 2 and some symptoms come back. I feel a little better if I go up to four, but my prescription is for 1 tid, so I will have to purchase some on my one if I want to take an extra. This is why I was interested in TAF, less expensive, single dose.