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Tenofovir Alafenamide anyone?

Shanti1

Administrator
Messages
3,089
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.
Interesting that my EBV titers have remained relatively unchanged from before starting valacyclovir in 2019 to my most recent test in June 2022. I think this is because it is an active battle for my immune system, as evidenced by break-through symptoms if I lower my valacyclovir dose.

June 2019
1660752936078.png


June 2022
1660752904981.png

1660752884380.png
 

godlovesatrier

Senior Member
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United Kingdom
Yes have heard this before with ebv.

I realised early on with valac that high doses were the only ones that would work. Dr Martin Lerner KNEW what he was doing. That becomes obvious as you realise how brutally crushing the reactivations can be on these drugs with lower dosing.

TAF was no different. I crashed one night and spent three days with crashing tiredness, my eyes were so dry and tired it was unbearable. Famvir does the same thing if I crash on that my ME is ten times as worse. Becuase the viruses reactivate but instead of my body becoming sick and gradually getting them under control the viruses fight the antivirals making me incredibly fatigued, brainfogged and barely able to function.

Valtrex caused me too many kidney issues. With long term dosing. I'm still debating valcyte.
 

heapsreal

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Interesting that my EBV titers have remained relatively unchanged from before starting valacyclovir in 2019 to my most recent test in June 2022. I think this is because it is an active battle for my immune system, as evidenced by break-through symptoms if I lower my valacyclovir dose.

June 2019
View attachment 48898

June 2022
View attachment 48897
View attachment 48896

I recall reading it can take time for viral titres to come down after antiviral treatment. I guess because it's just showing the immune response not the actual viral load. Have you also had T cell subsets tested as cd8 t cells can indicate active herpes infections along with the titre test?? 2 yrs you'd think something would have changed.
 

Shanti1

Administrator
Messages
3,089
I recall reading it can take time for viral titres to come down after antiviral treatment. I guess because it's just showing the immune response not the actual viral load. Have you also had T cell subsets tested as cd8 t cells can indicate active herpes infections along with the titre test?? 2 yrs you'd think something would have changed.

I'm not sure what other data is out there, but this study from Learner showed a decrease in IgM EBV antibodies (if they were initially present) over time in those on valacyclovir, but EA IgG did not decrease, at least at 6 months out: https://iv.iiarjournals.org/content/invivo/21/5/707.full.pdf. To be honest, I was expecting a decrease because I do feel better.

As far as T-Cell subsets, my NK cell activity is low, but I never had CD8 or any other subsets checked. I probably should as I think that is where some of my issue lies and low NK cell activity is the only truly abnormal finding I've ever had on lab work.

Have you tested for CD8 count?
 

heapsreal

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As far as T-Cell subsets, my NK cell activity is low, but I never had CD8 or any other subsets checked. I probably should as I think that is where some of my issue lies and low NK cell activity is the only truly abnormal finding I've ever had on lab work.

Have you tested for CD8 count?

Yes, a lymphocyte subsets count which show several different types of T cells and their counts. My cd8 and most other T cells are high. My nk numbers are within normal range but my nk function was really low. Usually it's says on the report a current or recent infection.
 

heapsreal

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Yes, a lymphocyte subsets count which show several different types of T cells and their counts. My cd8 and most other T cells are high. My nk numbers are within normal range but my nk function was really low. Usually it's says on the report a current or recent infection.

My different cd T cells have come down over time on antivirals but remain above normal range. If I go off antivirals they shoot back up. Had them tested atleast yearly since 2009.
 

Shanti1

Administrator
Messages
3,089
Yes, a lymphocyte subsets count which show several different types of T cells and their counts. My cd8 and most other T cells are high. My nk numbers are within normal range but my nk function was really low. Usually it's says on the report a current or recent infection.
My different cd T cells have come down over time on antivirals but remain above normal range. If I go off antivirals they shoot back up. Had them tested atleast yearly since 2009.
That is interesting, you are motivating me to have the testing done. I will ask my doc for it. Thanks!
 

fingers2022

Senior Member
Messages
425
Hi all, and Heaps. Just back after many years away. Started ART in 2017. Good recovery, still symptomatic. Since starting ART my VO2max has not declined with age. It has gone from 56 aged 59 at 60kg, to 53 aged 64 at 63kg – adjusted for weight these are pretty much the same.
I still get ‘viral’ symptoms. What do I mean by viral? Sore throat, swollen lymph nodes, drowning in mucous, peripheral neuropathy, persistent headache, bruising and cramps in fingers, dry mouth, itchy eyes, sore tongue...typical pattern for me, usually a bad period of about 3 weeks which seems to be a viral cycle, then I can have a reasonable patch for about the same duration. I try to keep active regardless but often have to rest completely in the bad patches. I always have PEM to varying degrees but accept this as an occupational hazard for the benefits of physical exercise.
I am limited to what ARVs I can take. Only the ones I can get without prescription, so this is essentially PrEP, which is Tenofovir + Emistricitabine. I believe if I could add in Bictegravir – the combo pill would be Biktarvy, which is only available with a prescription – then I could make further improvements.
I have interest from a UK research group to do a ART trial. We need some case studies for funding applications. Please post here or PM me if you have improved on ART and would like to be involved. Also lots of interest from an eminent group of international researchers, virologists, molecular biologists, clinicians, exercise scientists, data analysts.

Best wishes
Steve
 

godlovesatrier

Senior Member
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Hey @heapsreal @Shanti1

How did you get on with TAF? I had to stop due to the reasons above but my gums had become infected and I had to have a tooth pulled so that was really was stopped me I think. I recovered from the crash fairly quickly it seems. Does make me wonder though if it would be worth trying it again, but the brutal side effects from the crash I experience on all antivirals is just horrendous and no idea how to get round that issue. Problem is it's likely theraputic :/
 

fingers2022

Senior Member
Messages
425
Hey @heapsreal @Shanti1

How did you get on with TAF? I had to stop due to the reasons above but my gums had become infected and I had to have a tooth pulled so that was really was stopped me I think. I recovered from the crash fairly quickly it seems. Does make me wonder though if it would be worth trying it again, but the brutal side effects from the crash I experience on all antivirals is just horrendous and no idea how to get round that issue. Problem is it's likely theraputic :/
Hi GLAT
I would lovew to know more and understand your bad reaction. I have had no side effects whatsoever, only positives. Are you sure that your issues were due to meds? Cause and effect is difficult to prove.
 

Shanti1

Administrator
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3,089
Hi @godlovesatrier I could also not tolerate TAF, if I were to take it I would have to use the dropper method where I am getting a fraction of the dose, and I don't think that is worth it as I'm probably way under the therapeutic dose. So, I'm sticking with valacyclovir for now and experimenting with some immune stimulation. I had my updated COVID booster about 3 weeks ago, which put me into partial remission, same as the when I had the earlier vaccines. So obviously, I have a malfunctioning immune system that, when stimulated in the right way, leads to improvement.
 

godlovesatrier

Senior Member
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I've also found out that TAF doesn't cross the BBB very well, whereas Tenfovir does this better, so TAF may have been a bit of a waste of time for this reason, as I suspect it wouldnt have touch anything in the brain.

Yes I believe I could easily have a malfunctioning immune system as the root cause and it's not pathogenic. Unlike you tho I feel ten times worse if I get a vaccine. However if I get a cold I feel a lot better and I think it may even clear my brainfog.

At the moment my thoughts are about Rapamune and anti inflamatory peptides to bring down potentially aggressive inflamation all of which could be causing my primary symptom on exertion which is dizziness. PEM is there too I just have it controlled.
 

Shanti1

Administrator
Messages
3,089
@godlovesatrier That is disappointing that TAF doesn't cross the BBB. It has been shown that EBV can invade the nervous system. I do feel that it is in my CNS, as well as in my lymph nodes. Rapamune is interesting with its ability to induce autophagy and clear senescent cells. I hope it is a successful approach for you.
 

heapsreal

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Hey @heapsreal @Shanti1

How did you get on with TAF? I had to stop due to the reasons above but my gums had become infected and I had to have a tooth pulled so that was really was stopped me I think. I recovered from the crash fairly quickly it seems. Does make me wonder though if it would be worth trying it again, but the brutal side effects from the crash I experience on all antivirals is just horrendous and no idea how to get round that issue. Problem is it's likely theraputic :/

I just did the 1 month on it. Nothing really positive or negative.
I'm keen to use the valcyte or valgan again .
 

godlovesatrier

Senior Member
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2,513
Location
United Kingdom
Mitochondrion is in a protracted two month crash. And it seems to reactivate viruses for many. It also has a massive warning for infections saying that it stops neutrophil function. So I think it's full of massive warnings. I definitely won't be taking it now.

Something is definitely in my CNS. Although it might not be ebv but it could be. So hard figuring these things out. I'm going to give up for the time being as the bacillus subtilis has put me in a protracted flare. I can't currently get out of it and I was doing really well before this happened.
 

Judee

Psalm 46:1-3
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I have interest from a UK research group to do a ART trial. We need some case studies for funding applications. Please post here or PM me if you have improved on ART and would like to be involved. Also lots of interest from an eminent group of international researchers, virologists, molecular biologists, clinicians, exercise scientists, data analysts.

If you are talking about Aggressive Rest Therapy and haven't posted this request anywhere else you might want to in these threads:

https://forums.phoenixrising.me/threads/aggressive-rest-therapy-my-experience.46904/
https://forums.phoenixrising.me/threads/full-recovery-is-it-possible.52201/
https://forums.phoenixrising.me/threads/poll-did-strict-pacing-help-you.86426/#post-2381091

That way it might get more notice and interest.

It might also be nice if you started a brand new thread. It would be something participants of the study could use to document progress and compare notes with each other. It would also be a nice place to get updates on the study. I think a lot of us would follow the thread.

I "preach" ART but I live alone and have to take care of myself. I'm also ADHD and OCD so my attempts so far have only been somewhat committed. :oops:
 
Last edited:

DrUniverse

Godfather
Messages
154
Hi @godlovesatrier I could also not tolerate TAF, if I were to take it I would have to use the dropper method where I am getting a fraction of the dose, and I don't think that is worth it as I'm probably way under the therapeutic dose. So, I'm sticking with valacyclovir for now and experimenting with some immune stimulation. I had my updated COVID booster about 3 weeks ago, which put me into partial remission, same as the when I had the earlier vaccines. So obviously, I have a malfunctioning immune system that, when stimulated in the right way, leads to improvement.

1:1 the same except the Part with Covid Booster.
Still searching for the holy grail in immune stimulation agents.
 

Shanti1

Administrator
Messages
3,089
@DrUniverse have you tried oxymatrine or inosine? Oxymatrine was helpful for me, I had a fever for a week or so after taking it and it seems to help me keep the EBV under control. Inosine aggravated me too much, I didn't trust that it was a "worse before better" situation.