Anyone here used HIV/AIDS treatment for CFS?

[undiagnosed]

Hi @a5610183, there have been a number of other folks like yourself popping up on various threads here recently. Do you have any specific information regarding antiviral drugs people are trying?

 

[thruth1]

I'm knew to the site,
But I'm strong believer that this illness is the result of a retroviral infection, the way it present itseof,the low cell mediated immunity that most of of share, I'm also strong believer that retroviral therapy will help, unfortunately we don't know exactly LIKE HIV wich one works better, and how , since all retroviruses associated with ME/CFS have later been dismissed or discredit.
But base in the little that we know from the small studies of ARV's in XMRV, MLV, HTLV, FAIRLANE LEUKEMIA , NÚCLEOTIDES ARV's are the ones with better action and inhibition of this type of retroviruses, also the fact that they replicate slower may explain why some people are using it intermittent and not every day.
I have done quite a bid research and found out that certain retroviruses are very low progresión on their owne but they use the envelope protein of certain type of herpes to replicate and to enter the cells.
This also may explain quiet a few things#1 why most of ME/cfs are associated with herpes viruses, and why many people have their onset after a viral infection with EBV etc, why many people tested positive back them to xmrv and still health with out onset , also explains why some of this NARV's and also antiviral work.
It may not work directly in the retrovirus as much, bu if the retrovirus is using the envelope protein of this viruses to replicate slowing Dow viral load and shading may slow down the retrovirus.

I do agree this retroviral medications should be taking under supervision of a physician to prevent further damage, they are very toxic.
There is a lot of suspicions again that retroviruses maybe involve not just in Me but other conditions.
I think there is enough evidence of that ( htlv-1 TSP/HAM, share a lot of neuroimmune similarities .
My doctor is a well know doctor in ME, I'm not sure if she will be willing to prescribe them for me and go thru with it, I'll talk to her ok my next visit, if she is not willing I'll try one of my other doctors.

 

[thruth1]

What I have read about HIV patients, please correct me if I was dis-informed, is that they can take daily this cocktail of drugs for the rest of their lives, sometimes 30-40 years and they can live a normal life, that HIV is nowadays less dangerous than other chronic diseases such as diabetes. Is this true or is just another medical propaganda shameless lie?
So if that is true this means that since these drugs can be taken 30 years on a daily basis, they are not so harmful?
If we wait and do nothing while our health situation is constantly degrading and our life is extinguishing - are we sure that this is better than trying to take these drugs?

U are absolutely right!!
A person with HIV can take a cocktail and live a very normal healthy life, as Nancy Klimas said in her interview when she said if she will have to chose HIV or CFS.. she will chose HIV with out hesitation.
HIV works on the immune system but is a much More subsetible virus to retroviral therapy than MLV viruses, they can use none nucleotide ARV's that are less toxic and have less effect on human DNA .
That's why many scientists believe that HIV need coinfection to progress to AIDS, many people propuse that the unknow pathogen that we may have , the retrovirus that we may have that deplete our cell mediated immunity is the co factor that an HIV PERSON need to progress to AIDS!!
To me make sense since HIV deplete your cd4's etc and has diferent mechanism that the retrovirus from MLV family, and if you have both your body is totally naked vulnerable to everything ..
that may explain why people don't respond to ARV"s and have that agressive HIV that progress to AIDS.

 

[thruth1]

Hi Sorin,

It's true that some people may have been better with ARVs (and it didn't work on some) but it doesn't mean that these people have had a HIV like virus. From what I read, ME/CFS is not immunodeficiency virus. You don't die because the immune system is weak when you have ME/CFS, actually I even read that you don't die earlier.

Hip said on PR that ARVs have a big spectrum of action, so they also act on herpes viruses. A lot of people have improved with antivirals. Was it because antivirals target retrovirus? I don't think so, rather than because it targets herpes and remodulate the immune system.

Is an retrovirus implicated in ME/CFS? I don't know but be sure that Ron Davis is doing the maximum to discover whatever is implicated.

Rose49 said "from Ron: We are testing for ALL viruses, bacteria, funguses and parasites. We are even testing for organisms that have never been seen before by doing elaborate sequence comparisons. First we eliminate the human DNA in the sample. Then we compare sequences of DNA (not human - those are gone) that we find in the individual to every sequence that's ever been done in the entire world. We do not require a perfect match, which means we can find organisms that have never been seen before because every organism is related to some organism that HAS been found. We are using very heavy computational analysis to do this."

Maybe following his research and read some threads about it would make you feel better.

When we were normal viruses bacteria fungus etc, caused no harm as they do with people that have healthy immune system, health NK cells and cell signaling, but since we don't all this grow uncheck, the exact factor of the symptoms it maybe each of this things candida, fungus, viruses, but the underlaying cause allowing them, is with out a doubt and immune disfuntion ( from immune disfuntion to deficiency it's only a matter of interpretation )

 

[a5610183]

Most people eat RAL and TDF have a great relief, but the only do not know is the resistance, do not know how long we can persist, but I know the longest to eat a year, and now also stable

 

[thruth1]

However, is it possible somehow to kill the viruses? Or the best that can be done is to stop reproducing them? If it is not possible to kill them then that means one should take the antivirals for CMV, EBV, HSV, etc... for the rest of the life?!?!
Because if we stop taking Valtrex that means the viruses are reproducing again... On the other hand the perspective on taking Valtrex daily for the rest of the life is not so good...

I guess even with the risk is better to take antivirals for the rest of our life but have a better chance of keeping this illness at bay

 

[undiagnosed]

Most people eat RAL and TDF have a great relief, but the only do not know is the resistance, do not know how long we can persist, but I know the longest to eat a year, and now also stable

Interesting. Ya my major issue besides the cost and toxicity is not knowing the efficacy of the drug and the possible development of resistance as you mentioned. How do people afford it?

 

[undiagnosed]

I started a group for members who suspect their chronic illness may have a retroviral etiology. If anyone here suspects a retroviral etiology, please join the group so we can better organize ourselves.

 

[thruth1]

I started a group for members who suspect their chronic illness may have a retroviral etiology. If anyone here suspects a retroviral etiology, please join the group so we can better organize ourselves.

We're is the group or the link???

 

[thruth1]

I started a group for members who suspect their chronic illness may have a retroviral etiology. If anyone here suspects a retroviral etiology, please join the group so we can better organize ourselves.

I'm 100% sure it's retroviral Ethiology!!
No doubts at all!!

 

[Daffodil]

@thruth1 maybe I posted elsewhere in this thread I don't know...but I took azt, raltegravir, and tenofovir for a few years cuz I was basically dying with this disease when the XMRV news came out.

I also heard several stories of people recovering using 1 or 2 of the HIV drugs.

my advice is: unless you have exhausted every other option, don't do it. although tenofovir provided a tiny bit of improvement (probably due to its action on HERV), I now have permanent cardiac issues thanks to the AZT and also need spine surgery (perhaps thanks to the tenofovir?)

I ended up going from bedridden/about to suicide, to 40% functioning on long-term antibiotics.

remember that retroviral etiology is suspected in many autoimmune diseases but no one has ever found anything concrete.

you are right in that a retrovirus would fit perfectly as the cause of this disease.....but my CD4 went from about 350 to 850 with just antibiotics + supplements

xox

 

[Daffodil]

This article might be of interest.

Meclchjorsen and his colleagues found that tenofovir offered two types of protection to the cells. First, it suppressed the production of inflammatory messengers, such as Interleukin-8 (IL-8). The authors note that other studies of tenofovir have not found an inflammatory effect, and so caution is warranted in interpreting the results. They stress, however, that because they used both tenofovir in its commercial form Viread, which is actually a modified version of the active drug tenofovir, and purified tenofovir, they feel their results are valid and deserve further testing.

Tenofovir also appeared to keep the balance of IL-12 and IL-10 stable. The drug enhanced the IL-12 levels, thus increasing their ability to respond to other infectious pathogens, and it kept IL-10 levels low, thus keeping the body from putting the brakes on the immune response.

https://www.poz.com/article

very interesting.

my doc said it acted on HERV. when I would try to stop Tenofovir, I would quickly become bedridden again even though the drug itself improved my condition only a tiny bit...hard to explain

anyway, when I began the antibiotic treatment, I asked my doc when he thought I would be able to stop the Tenofovir. I think he said 4 yrs? I stopped it in 3 1/2 if I recall correctly....and things went OK. I don't think I noticed any change in my condition.

So perhaps the HERV had settled down by that point?

 

[undiagnosed]

We're is the group or the link???

Are you able to view groups? If you go to the top of the webpage where all of the tabs are, you should see a Groups tab. When you click that does it show a listing of groups?

This is the link:
http://forums.phoenixrising.me/inde...suspected-retroviral-etiology.83/group-detail

If the link works and the group page loads, click the Join Group link to add yourself.

 

[thruth1]

@thruth1 maybe I posted elsewhere in this thread I don't know...but I took azt, raltegravir, and tenofovir for a few years cuz I was basically dying with this disease when the XMRV news came out.

I also heard several stories of people recovering using 1 or 2 of the HIV drugs.

my advice is: unless you have exhausted every other option, don't do it. although tenofovir provided a tiny bit of improvement (probably due to its action on HERV), I now have permanent cardiac issues thanks to the AZT and also need spine surgery (perhaps thanks to the tenofovir?)

I ended up going from bedridden/about to suicide, to 40% functioning on long-term antibiotics.

remember that retroviral etiology is suspected in many autoimmune diseases but no one has ever found anything concrete.

you are right in that a retrovirus would fit perfectly as the cause of this disease.....but my CD4 went from about 350 to 850 with just antibiotics + supplements

xox

Daffodil,
Our disease is not about the cd4 count, cd4 count goes down do to this active infections and viruses..
Our disease is about NK CELLS FUNTION, is about IMMUNITY, prior to the decrease of cd4 we already had IMMUNITY thru the floor that's what allow viruses bacteria to do the cd4 damage.
Our cell signaling cytotoxic to kill punch viruses and bacteria to totally kill them is what is impared.
NK CELLS,,, NK CELLS= IMMUNITY

 

[heapsreal]

Daffodil,
Our disease is not about the cd4 count, cd4 count goes down do to this active infections and viruses..
Our disease is about NK CELLS FUNTION, is about IMMUNITY, prior to the decrease of cd4 we already had IMMUNITY thru the floor that's what allow viruses bacteria to do the cd4 damage.
Our cell signaling cytotoxic to kill punch viruses and bacteria to totally kill them is what is impared.
NK CELLS,,, NK CELLS= IMMUNITY

If anything my cd4 count and cd8 as well as other lymphocyte t cells are constantly elevated. Nk cells within normal range but nk function very low.

Viread has definitely made a big impact but have also needed abx and avs because of immune dysfunction.

I dont know if its a herv or a RV or if arvs work by acting on the immune system, but arvs are helping. Is there actually anybody investigating/researching these issues??

 

[Daffodil]

Daffodil,
Our disease is not about the cd4 count, cd4 count goes down do to this active infections and viruses..
Our disease is about NK CELLS FUNTION, is about IMMUNITY, prior to the decrease of cd4 we already had IMMUNITY thru the floor that's what allow viruses bacteria to do the cd4 damage.
Our cell signaling cytotoxic to kill punch viruses and bacteria to totally kill them is what is impared.
NK CELLS,,, NK CELLS= IMMUNITY

I believe my doctor tests NK cell function indirectly by testing Perforin expression. He used to test NK cell function directly..i am not sure why he stopped.

I understand what you are saying.....but consider the fact that so many people have achieved remission of their MS (which is very similar to this disease technically) with antibiotics, some maintaining remission even after stopping the medicine. you can read about the Stratton protocol or the Wheldon protocol for example.

I have spoken to researchers who feel very strongly that this illness is strongly related to gut bacteria....including researchers who have done genetic sequencing on CFS tissue!

 

[thruth1]

@thruth1 maybe I posted elsewhere in this thread I don't know...but I took azt, raltegravir, and tenofovir for a few years cuz I was basically dying with this disease when the XMRV news came out.

I also heard several stories of people recovering using 1 or 2 of the HIV drugs.

my advice is: unless you have exhausted every other option, don't do it. although tenofovir provided a tiny bit of improvement (probably due to its action on HERV), I now have permanent cardiac issues thanks to the AZT and also need spine surgery (perhaps thanks to the tenofovir?)

I ended up going from bedridden/about to suicide, to 40% functioning on long-term antibiotics.

remember that retroviral etiology is suspected in many autoimmune diseases but no one has ever found anything concrete.

you are right in that a retrovirus would fit perfectly as the cause of this disease.....but my CD4 went from about 350 to 850 with just antibiotics + supplements

xox

Everything I have read about Azt is bad, even though inhibits XMRV ETC, side effect acidocis etc is really bad.
On the other hand have read encouraging stuff about combining viread( tenafovir) with insetres (raltegravir )..probably even better with an antiviral .
What Dr pridgen said about the one two punch to helpers viruses with combination than more than one drug to be more effective it may explain thesame thing that happens in HIV that combining more than one drug prevent resistance.
Unfortunately we don't know exactly how effective this ART's are on us, to many people with ME are reluctant to believe they may have a virus like AIDS, we should all pursuit more research and trials on ART's

 

[thruth1]

I believe my doctor tests NK cell function indirectly by testing Perforin expression. He used to test NK cell function directly..i am not sure why he stopped.

I understand what you are saying.....but consider the fact that so many people have achieved remission of their MS (which is very similar to this disease technically) with antibiotics, some maintaining remission even after stopping the medicine. you can read about the Stratton protocol or the Wheldon protocol for example.

I have spoken to researchers who feel very strongly that this illness is strongly related to gut bacteria....including researchers who have done genetic sequencing on CFS tissue!

I personally think this disease is related to an infectious disease, a retrovirus like AIDS that act changing your body methylation, messing up your cell mediated immunity, that is what keeps under control in our body the balance of everything, bacteria, viruses..
That is why we find so many bad bacteria in our systems but also the virus part, the only way that's explained is that we don't have IMMUNITY .
Our cells are desrrupted DONT comuicarte well.
Interestingly lots of new research show that is what happen with cancer to.
The immune system (NK CELLS) don't detect the cancer formation and don't have the cytotoxic to punch thru them an kill them.
I think that's what happen with ME,MS...

 

[Daffodil]

@thruth1 you could be right...it would fit with many of my experiences....but no one has found one yet...

maybe its different diseases....one with bacterial origin and one with retrovirus

who the heck knows

and maybe one with people who simply cant put herpes viruses to sleep

 

[a5610183]

@thruth1
You and I like the idea, must be a retrovirus