has anyone tried antiretroviral therapy?

[Julianasss]

Has anyone tried antiretroviral therapy?

 

[junkcrap50]

Yes. I took Descovy for 9 months and it did nothing for me. Very expensive and ineffective.

There's a lot of interesting research/facts on how EBV and other viruses can trigger HERVs, which was the reasoning behind trying it.

 

[gbells]

Descovy

I don't see the rationale for Descovy at all. It is an expensive PREP treatment for HIV.
https://www.rxlist.com/descovy-drug.htm#clinpharm

 

[aquariusgirl]

Isentress & Vemlidy. Loved the Vemlidy especially but insurance finally demanded HIV titers & wouldn’t pay for it otherwise so lost coverage

 

[andyman123]

Yes. I took Descovy for 9 months and it did nothing for me. Very expensive and ineffective.

There's a lot of interesting research/facts on how EBV and other viruses can trigger HERVs, which was the reasoning behind trying it.

You can get the equivalent on alldaychemist as Tavin or now even Tentide (Tenofovir Alafenamide). Tenofovir Alafenamide has a much lower mg as more of it gets into cells and thus much lower side effects to kidneys etc. I'm actually very surprised they have it so soon.

To anyone who specifically has problems with EBV, zidovudine is the drug to go with. Not only does it interfere with direct replication, it actually works to purge latent infected cells. I have plenty of literature to back up that claim.

I've only had a few medications seized by customs, they were the Tenofovir HIV drugs, back when I was trying everything and in immense pain. The reason being, likely, is that many of those newer drugs are still in patent and what you pay for in the United States for $1500-5000 a month you can get as cheap as $40-80 bucks on an online pharmacy.

 

[Hip]

Dr Chia finds tenofovir works for up to 1 in 3 ME/CFS patients. There are a couple of tenofovir success stores in this recovery and improvements thread.

Some ME/CFS patients find tenofovir hard to tolerate, and in these cases low doses can be used initially and the dose slowly built up. The full dose of tenofovir disoproxil fumarate is 300 mg daily, but patients often start on an eighth or a sixteenth of a 300 mg tablet.

As @andyman123 says, tenofovir alafenamide (TAF) may be safer than tenofovir disoproxil fumarate (TDF), as TAF appears to have less kidney and bone side effects. A dose of 25 mg of TAF is equivalent to 300 mg of TDF. Ref: 1

Tenofovir may be effective against the low-level infections found in ME/CFS. 1 Tenofovir is also effective against human endogenous retrovirus (HERV) infections, 1 which may be active in ME/CFS. 1 HERVs are naturally present in all humans, but are normally inactive; however enteroviruses and EBV can cause HERVs to activate. 1

Tenofovir can cause serious life-threatening side effects, including lactic acidosis, kidney problems and severe liver problems, see here. When taking tenofovir, regular kidney function blood tests are required.

 

[gbells]

Dr Chia finds tenofovir works for up to 1 in 3 ME/CFS patients. There are a couple of tenofovir success stores in this recovery and improvements thread.

Some ME/CFS patients find tenofovir hard to tolerate, and in these cases low doses can be used initially and the dose slowly built up. The full dose of tenofovir disoproxil fumarate is 300 mg daily, but patients often start on an eighth or a sixteenth of a 300 mg tablet.

As @andyman123 says, tenofovir alafenamide (TAF) may be safer than tenofovir disoproxil fumarate (TDF), as TAF appears to have less kidney and bone side effects. A dose of 25 mg of TAF is equivalent to 300 mg of TDF. Ref: 1

Tenofovir may be effective against the low-level infections found in ME/CFS. 1 Tenofovir is also effective against human endogenous retrovirus (HERV) infections, 1 which may be active in ME/CFS. 1 HERVs are naturally present in all humans, but are normally inactive; however enteroviruses and EBV can cause HERVs to activate. 1

Tenofovir can cause serious life-threatening side effects, including lactic acidosis, kidney problems and severe liver problems, see here. When taking tenofovir, regular kidney function blood tests are required.

Ok, it's another apoptosis blocking virus. That makes sense. We really need VTose. It would work.

 

[Julianasss]

Dr Chia finds tenofovir works for up to 1 in 3 ME/CFS patients. There are a couple of tenofovir success stores in this recovery and improvements thread.

Some ME/CFS patients find tenofovir hard to tolerate, and in these cases low doses can be used initially and the dose slowly built up. The full dose of tenofovir disoproxil fumarate is 300 mg daily, but patients often start on an eighth or a sixteenth of a 300 mg tablet.

As @andyman123 says, tenofovir alafenamide (TAF) may be safer than tenofovir disoproxil fumarate (TDF), as TAF appears to have less kidney and bone side effects. A dose of 25 mg of TAF is equivalent to 300 mg of TDF. Ref: 1

Tenofovir may be effective against the low-level infections found in ME/CFS. 1 Tenofovir is also effective against human endogenous retrovirus (HERV) infections, 1 which may be active in ME/CFS. 1 HERVs are naturally present in all humans, but are normally inactive; however enteroviruses and EBV can cause HERVs to activate. 1

Tenofovir can cause serious life-threatening side effects, including lactic acidosis, kidney problems and severe liver problems, see here. When taking tenofovir, regular kidney function blood tests are required.

How you feel and how you are being treated. did you have any symptoms - pain in the back of your head and burning of your body?

 

[Davsey27]

You can get the equivalent on alldaychemist as Tavin or now even Tentide (Tenofovir Alafenamide). Tenofovir Alafenamide has a much lower mg as more of it gets into cells and thus much lower side effects to kidneys etc. I'm actually very surprised they have it so soon.

To anyone who specifically has problems with EBV, zidovudine is the drug to go with. Not only does it interfere with direct replication, it actually works to purge latent infected cells. I have plenty of literature to back up that claim.

I've only had a few medications seized by customs, they were the Tenofovir HIV drugs, back when I was trying everything and in immense pain. The reason being, likely, is that many of those newer drugs are still in patent and what you pay for in the United States for $1500-5000 a month you can get as cheap as $40-80 bucks on an online pharmacy.

What are the chances custom seizes tenovir from alldaychemist ordered to the Us?

 

[andyman123]

What are the chances custom seizes tenovir from alldaychemist ordered to the Us?

I hate to say it but all of them were seized. I ordered 2 of Tenofovir. I had one package of AZT seized but can't be sure. I got 3-4 fda letters saying they couldn't give them to me.

You don't have to worry about customs seizing it and getting in trouble. Alldaychemist always refunded me.

Yeah, it sucks. tenofovir alafenamide is a premium drug and you can get it for pennies compared to thousands here in the states.

I was wrong previously, apparently (and particularly) tenofovir alafenamide is a super potent inhibitor of EBV. Might be worth a shot and it's safer.

Good news is they're getting to the point where they can eradicate viruses with gene therapy (and the use of antivirals). A lot of viruses are catastrophic to society. Keith Jerome and his team use adenoviruses, but I think the crispr has been shown safe enough that they can just inject it all over the body.

So keep trying s$&#, do not give up!!!! I got rejected meds from a few doctors, even something as safe as valacyclovir.

 

[Rim1]

You can get the equivalent on alldaychemist as Tavin or now even Tentide (Tenofovir Alafenamide). Tenofovir Alafenamide has a much lower mg as more of it gets into cells and thus much lower side effects to kidneys etc. I'm actually very surprised they have it so soon.

To anyone who specifically has problems with EBV, zidovudine is the drug to go with. Not only does it interfere with direct replication, it actually works to purge latent infected cells. I have plenty of literature to back up that claim.

I've only had a few medications seized by customs, they were the Tenofovir HIV drugs, back when I was trying everything and in immense pain. The reason being, likely, is that many of those newer drugs are still in patent and what you pay for in the United States for $1500-5000 a month you can get as cheap as $40-80 bucks on an online pharmacy.

Hello Andyman123.. I've looked for info about Zidovudine and the only ones I've found are 2 studies on its effect on MS and on EBV related lymphomas. Where is all the other plenty literature you mention? I want to start but I'm undecided between TAF and Zidovudine. Do you know which one is more potent against EBV latent "hidden" infections? Which one reaches the nervous cells better and which one has lower risks and side effects? Thank you.

 

[Pyrrhus]

To anyone who specifically has problems with EBV, zidovudine is the drug to go with. Not only does it interfere with direct replication, it actually works to purge latent infected cells. I have plenty of literature to back up that claim.

For treating an EBV re-activation, the drug of choice is usually Valcyte:
https://forums.phoenixrising.me/thr...ll-have-positive-ea.81697/page-3#post-2307914

Tenofovir is only weakly effective against EBV:
https://forums.phoenixrising.me/threads/input-on-treatment-protocol.81150/#post-2294340

Zidovudine (AZT) is generally no longer prescribed to people due to its distinctly negative effects on mitochondria.

 

[Rim1]

For treating an EBV re-activation, the drug of choice is usually Valcyte:
https://forums.phoenixrising.me/thr...ll-have-positive-ea.81697/page-3#post-2307914

Tenofovir is only weakly effective against EBV:
https://forums.phoenixrising.me/threads/input-on-treatment-protocol.81150/#post-2294340

Zidovudine (AZT) is generally no longer prescribed to people due to its distinctly negative effects on mitochondria.

Yes unfortunately Zidovudine has this effect in mitochondria. However I'm not talking about EBV-reactivation but for chronic latent EBV infection which may cause CFS (at least in a subgroup) as it happens in some autoimmune diseases. Valcyte and other antiherpetic antivirals don't work on that.

As for Tenofovir I saw a study which says it is a potent EBV inhibitor but I don't know if that's true https://www.pnas.org/content/pnas/early/2020/05/13/2002392117.full.pdf

Anyway, do you know any other antiretroviral which is also effective in EBV infected cells?

 

[andyman123]

For treating an EBV re-activation, the drug of choice is usually Valcyte:
https://forums.phoenixrising.me/thr...ll-have-positive-ea.81697/page-3#post-2307914

Tenofovir is only weakly effective against EBV:
https://forums.phoenixrising.me/threads/input-on-treatment-protocol.81150/#post-2294340

Zidovudine (AZT) is generally no longer prescribed to people due to its distinctly negative effects on mitochondria.

Actually tenofovir alafenamide is twice as potent against ebv as ganciclovir
"TAF was 35- and 24-fold and TDF was 10- and 7-fold more potent than acyclovir and penciclovir, respectively, and TAF was also twice as potent as ganciclovir."
from: https://pubmed.ncbi.nlm.nih.gov/32409608/

AZT induces apoptosis in infected cells. I think it has to do with inhibition of some of the EBV latency proteins.

Mods should restrict your account Pyrrhus, you post a lot of misconstrued or false info

I'm essentially back to 100% now, even without the use of antivirals. I try to help but people either fail to move on info or just can't seem to figure it out or comprehend.

 

[andyman123]

Yes unfortunately Zidovudine has this effect in mitochondria. However I'm not talking about EBV-reactivation but for chronic latent EBV infection which may cause CFS (at least in a subgroup) as it happens in some autoimmune diseases. Valcyte and other antiherpetic antivirals don't work on that.

As for Tenofovir I saw a study which says it is a potent EBV inhibitor but I don't know if that's true https://www.pnas.org/content/pnas/early/2020/05/13/2002392117.full.pdf

Anyway, do you know any other antiretroviral which is also effective in EBV infected cells?

If any of you are as sick as I was, why wouldn't you keep trying stuff until something starts to work?!

TAF, AZT, along with ACV and GCV are all relatively safe drugs.

 

[Rim1]

If any of you are as sick as I was, why wouldn't you keep trying stuff until something starts to work?!

TAF, AZT, along with ACV and GCV are all relatively safe drugs.

Thank you for answering.
May I ask you which one did you use to go back to your 100% ?
Inducing apoptosis of the infected cells or inhibit EBV latency proteins as you say, would be the most perfect thing but there is plenty of studies about AZT being toxic to the mitochondria and in some animal studies also cancerogenic. So I am concerned about using it. Is there any other drug that can do its job without the risks I mentioned?
TAF in the studies potently inhibits EBV lytic replication (which occurs in EBV reactivation which is a different thing from CFS) but I don't understand if it induces apoptosis of the infected cells or blocks the latent EBV activity. TAF looks safer to me that's why I ask.

 

[Rim1]

If any of you are as sick as I was, why wouldn't you keep trying stuff until something starts to work?!

TAF, AZT, along with ACV and GCV are all relatively safe drugs.

May I ask you which one did you use to recover?

 

[Judee]

I've only had a few medications seized by customs, they were the Tenofovir HIV drugs, back when I was trying everything and in immense pain. The reason being, likely, is that many of those newer drugs are still in patent and what you pay for in the United States

Are you still trying to order from overseas and are you still experiencing seizure of the Tenofovir? And also as Rim1 asked which did you find helped you to recover?

Edit: I wonder if he's not on the site anymore.