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

Has tenofovir benefited you?

  • Yes - I am in remission

    Votes: 1 0.9%
  • Yes - Significant improvement

    Votes: 4 3.7%
  • Yes - Moderate improvement

    Votes: 2 1.8%
  • It has not done anything good or bad

    Votes: 8 7.3%
  • No - Moderate worsening

    Votes: 3 2.8%
  • No - Substantial worsening

    Votes: 1 0.9%
  • I have not tried tonofovir

    Votes: 90 82.6%

  • Total voters
    109

fingers2022

Senior Member
Messages
427
DTG Is Dolutegravir ?

Do you know any one who did try this combination before ?

Am having severe flu for the first time in couple of years and for the first time in 7 years I got fever !

It's between 37.6-38 while I never had any fever more than 37.1 since the first month of this nightmare

I don't have brain fogs but I have nausea and much peeing but over all I feel gd with the flu symptoms

A lot of the other symptoms did disappear with the flu but not all

I will go under my trial for 3 months and might add Raltegravir soon

Lots keep each other's updated

Best wishes
Drink lots of water, mate.
 

fingers2022

Senior Member
Messages
427
You can cut tablets in half or quarters if you want to use a lower dose.

Dr Weir reports that signs of recovery in ME/CFS patients only appeared after 3 or 4 months on tenofovir, so it maybe some while before you see benefits.
I'm seeing this...5 to 6 months...pretty damn good.
Stick it out, keep going.
What else is there?
We are leading the way...my friend ...your friend, St.Iambannedfromhere is leading the way
Be brave, be honest...if it works tell us, if it doesn't tell us too, but stay objective
 

fingers2022

Senior Member
Messages
427
Truvadu comes with one dosage , I will see how it will go and might add isentress to it if nothing obvious changed until the 6th week
6 weeks is short, take your time, be patient.
Take side effects...tough it out, they will disappear quickly.
 
Messages
7
DTG Is Dolutegravir ?

Do you know any one who did try this combination before ?

Am having severe flu for the first time in couple of years and for the first time in 7 years I got fever !

It's between 37.6-38 while I never had any fever more than 37.1 since the first month of this nightmare

I don't have brain fogs but I have nausea and much peeing but over all I feel gd with the flu symptoms

A lot of the other symptoms did disappear with the flu but not all

I will go under my trial for 3 months and might add Raltegravir soon

Lots keep each other's updated

Best wishes
Hi Omar,
I think this is a good sign ,which showing that your system is going to respond.
for my infection for this 4 years, I just got one time fever,after that time fever I have around 1 week don't have any symptoms,and for this 4 years I feeling I m not feeling cold to cold weather,and I never get cold in this 4 years except 1 time fever.
I think if our body can respond normally,we can get better and better.
our immune system must be have something wrong,maybe arv drugs can suppress this virus,so our immune system can respond normally so you have fever.

we can work together to update our effect for arv drugs,I think we could find out more, and control this ,finally become cure.

Keep contact
Best wishes:)
 

patient.journey

Senior Member
Messages
443
Am on truvadu since couple of months

1) it took my general health from 5-8.5 as an average , less neurological problems , higher body performance which leads to normal days out but without extra walking or doing any sports or I will be down with pain and lymph nodes inflammation, I had multiple cold like symptoms which one of them remained for a 3 weeks and I had one real flu or flu like symptoms with low grade fever for me as am always under 36,7 and I did get over the 37 and that was an amazing period on my body symptoms which unfortunately came back after the flu feeling was gone

2) truvadu by it self didn't cure me or put me on remission so am searching into two things , adding isentress and taking some immune supporter treatment like gcmaf to rebuild my immune system , and am taking and searching for good probiotics to fix my gut issues which reflex on my hall health level that I can see on my tongue which is white because of the overgrowth of the bad bacteria in the gut that antibiotics and good probiotics do help with

ARV seems to help some patients and am one of them but routine testing should be considered monthly for kidney and liver + CBC and am doing that by my self , it's costing me a lot but the advantage is what is keeping me and the lack of other choices !

Regards
 
Messages
5
Am on truvadu since couple of months

1) it took my general health from 5-8.5 as an average , less neurological problems , higher body performance which leads to normal days out but without extra walking or doing any sports or I will be down with pain and lymph nodes inflammation, I had multiple cold like symptoms which one of them remained for a 3 weeks and I had one real flu or flu like symptoms with low grade fever for me as am always under 36,7 and I did get over the 37 and that was an amazing period on my body symptoms which unfortunately came back after the flu feeling was gone

2) truvadu by it self didn't cure me or put me on remission so am searching into two things , adding isentress and taking some immune supporter treatment like gcmaf to rebuild my immune system , and am taking and searching for good probiotics to fix my gut issues which reflex on my hall health level that I can see on my tongue which is white because of the overgrowth of the bad bacteria in the gut that antibiotics and good probiotics do help with

ARV seems to help some patients and am one of them but routine testing should be considered monthly for kidney and liver + CBC and am doing that by my self , it's costing me a lot but the advantage is what is keeping me and the lack of other choices !

Regards

Did you have a look at the second link I posted?
There might be some ideas for you there...
 

patient.journey

Senior Member
Messages
443
Did you have a look at the second link I posted?
There might be some ideas for you there...

I saw this before and I started my treatment after years of reading and the step to start ARV is not easy for me due multiple stuff

1) the resistance chance if it was a hitting one particularl infection.

2) the sourcing as I might not be able to complete my trial.

3) the cost of the treatment + the routine testing I do monthly.

4) the side effects and the extra caring of interactions if am going to take any other treatment for my blood pressure , an antibiotics etc ,, because those ARV treatment have a high list of interactions unfortunately and as I said before , there is no doctor to help putting a guideline treatment.
 
Messages
5
I saw this before and I started my treatment after years of reading and the step to start ARV is not easy for me due multiple stuff

1) the resistance chance if it was a hitting one particularl infection.

2) the sourcing as I might not be able to complete my trial.

3) the cost of the treatment + the routine testing I do monthly.

4) the side effects and the extra caring of interactions if am going to take any other treatment for my blood pressure , an antibiotics etc ,, because those ARV treatment have a high list of interactions unfortunately and as I said before , there is no doctor to help putting a guideline treatment.

I mean phytotherapeutic supplements with antiretroviral properties.
 

Sidny

Senior Member
Messages
176
I mean phytotherapeutic supplements with antiretroviral properties.
@YMRV The blog links you posted are in German, would you happen to know how to translate the page? I did see cistus mentioned in that blog which Dr. Klinghardt mentions as a possible antiretroviral. @Wally brought cistus to my attention. Thanks for posting that by the way.
 
Messages
5
@YMRV The blog links you posted are in German, would you happen to know how to translate the page? I did see cistus mentioned in that blog which Dr. Klinghardt mentions as a possible antiretroviral. @Wally brought cistus to my attention. Thanks for posting that by the way.
a download link for an english translation PDF of the treatment regime is placed right under the header of the blog entry.

if you access the blog page in web view (can be switched at the bottom if on mobile device), there is also an option to translate it into any chosen language on the top right side.
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
Tenofovir is helping me alot. No side effects at all or die off type stuff etc. Liver and kidney function trsts have been fine.
@godlovesatrier thanks for tagging this post, I was wondering when I was on the older tenofovir. Going by the dates, this was when I had improved significantly and continued until beginning of 2020 when famvir was cut due to import issues with covid etc.
 
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godlovesatrier

Senior Member
Messages
2,545
Location
United Kingdom
Some people on twitter are saying that TDF is better for covid due to the cells it saturates. But the side effects bother me a bit. My main issue is getting past the ebv startup effects. I have found a paper that proves my theory now, nice to be validated.

The trial study showed that patients treated with valac had a non productive ebv infection of the pharyngeal tissues. They then go onto explain the proteins involved re the non productive aspect. https://pubmed.ncbi.nlm.nih.gov/12964120/ " In many cases, the initial response to inhibition of replication was a persistent, nonproductive, EBV infection of the oral mucosa, characterized by limited expression of replicative EBV genes, especially BZLF1. ". I kept saying EBV was doing this in my case, because I kept getting the symptoms of acute ebv whenever I took antivirals. I've noticed tenofovir seems to be giving the quickest response maybe because it so strongly inhibits ebv compared to all the other anti viral drugs.

As I have had this happen and many others have, it proves you really do have to get quite sick (as Joshua Leisk also said) before getting better. Of course some people never experience this which makes me wonder if they are non responders to treatment and maybe don't even need it (??).

Also interesting you got on better with TDF (as did the author of the thread) because it does seem that TDF may have the edge over TAF. For covid they are saying PReP is required as TDF on its own isn't enough.
 

fingers2022

Senior Member
Messages
427
Does anyone know anywhere US residents can obtain PrEP online without prescription?

I use Dynamix International to import to UK - no prescription required for PrEP, but prescription is required for any ARVs not designated as PrEP, e.g. Biktarvy (PrEP + Bictegravir), which I would dearly love to try. Indeed research suggests that this is even a better option as PrEP...nonsensensical prescription requirements.

Also, does anyone have any views on pulsing the dosage? Any experience?

Thanks
 

Judee

Psalm 46:1-3
Messages
4,461
Location
Great Lakes
6 weeks is short, take your time, be patient.
Take side effects...tough it out, they will disappear quickly.
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.
but prescription is required for any ARVs not designated as PrEP, e.g. Biktarvy (PrEP + Bictegravir), which I would dearly love to try.
https://www.inhousepharmacy.vu/p-99900828-taffic-tablets.aspx (but expensive :()