Anyone here used HIV/AIDS treatment for CFS?

[barbc56]

The evidence at least for Fibromyalgia is that FM amplifies painful sensations by affecting the way your brain processes pain signals and not a neutral immune condition. My neurologist says the same thing but being a neurologist, he may be looking at that part of the elephant. I need to look up any citations I've collected. Like me/ crs it can be precipitated by a virus but it's more frequently started by some type of physical injury or chronic illness such as arthritis.

I not aware that antivirals help with neurological disorders but I could be mistaken about that as well as the above.

 

[sorin]

I not aware that antivirals help with neurological disorders

Neurological disorders can be the result of strong viral infection with CMV, EBV and other herpes viruses. Not to speak about HIV neurological problems.

 

[sorin]

@sorin The two used are viread and isentress.
Those who did not initially improve, lowered the dose and then successfully continued.

@Countrygirl Thank you for this reply, is very interesting. Do you know for how long did they take Viread and Isentress and if they took them in parallel or only one, and what dose.
On the official web site of Viread it says it can cause serious side effects (liver, kidney, etc) while for Isentress it says it has a low rate of side effects (which are also minor I would say: dizziness, nausea, tiredness, etc - quite similar with what Valtrex side effects are). So Isentress looks very promising, if it would be so well tolerated like Valtrex for example (which I personally tolerate very well since 5 months), so if Isentress would be in terms of side effects like Valtrex then it would worth to try it.
Anyone here tried Isentress?
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P.S Seems Isentress could be used also for Multiple Sclerosis, https://www.mssociety.org.uk/ms-research/treatments-in-the-pipeline/raltegravir
and for herpes viruses https://www.poz.com/article/hiv-herpes-Isentress-19150-9272
So, why not use it for CFS?

 

[Countrygirl]

@Countrygirl Thank you for this reply, is very interesting. Do you know for how long did they take Viread and Isentress and if they took them in parallel or only one, and what dose.
On the official web site of Viread it says it can cause serious side effects (liver, kidney, etc) while for Isentress it says it has a low rate of side effects (which are also minor I would say: dizziness, nausea, tiredness, etc - quite similar with what Valtrex side effects are). So Isentress looks very promising, if it would be so well tolerated like Valtrex for example (which I personally tolerate very well since 5 months), so if Isentress would be in terms of side effects like Valtrex then it would worth to try it.
Anyone here tried Isentress?
----------------------------------------
P.S Seems Isentress could be used also for Multiple Sclerosis, https://www.mssociety.org.uk/ms-research/treatments-in-the-pipeline/raltegravir
and for herpes viruses https://www.poz.com/article/hiv-herpes-Isentress-19150-9272
So, why not use it for CFS?

It seems to vary from person to person. One who started viread just a few weeks ago( I don't know when they began exactly) has already seen an improvement while another, for example, took both for several months and achieved what they estimated as 95% health which has now been maintained for a year.

 

[Keela Too]

P.S Seems Isentress could be used also for Multiple Sclerosis, [url]https://www.mssociety.org.uk/ms-research/treatments-in-the-pipeline/raltegravir[/url]

Is Isentress another name for ralegravir like Viread is for tenofovir?

 

[sorin]

Is Isentress another name for ralegravir like Viread is for tenofovir?

Yes, I think so

 

[Keela Too]

Okay. Thankyou

 

[taa2]

It seems to vary from person to person. One who started viread just a few weeks ago( I don't know when they began exactly) has already seen an improvement while another, for example, took both for several months and achieved what they estimated as 95% health which has now been maintained for a year.

Do you know how ill these group of people are/were? I'm considering trying the HIV medicine tenofovir, can get it easily online safely in the UK. A clinic in London have tested to see if the HIV drugs from online are for real and all 100% safe. I don't really know if I should just go ahead and try it myself as my GP would think I'm mad for trying it for CFS/M.E. I guess i could just try it and get kidney function tests from my private doctor.

 

[Johannawj]

"For those of you who missed ECTRIMS the following are our results of the Raltegravir (Isentress) Pilot Study in Relapsing Multiple Sclerosis (INSPIRE) (NCT01767701), which we presented at ECTRIMS. The study was negative in that we did not show an impact of raltegravir on inflammatory disease activity in MS as measured by Gd-enhancing MRI."

http://multiple-sclerosis-research.blogspot.com/2016/10/researchspeak-inspire-trial-results.html?m=1

 

[sorin]

I don't really know if I should just go ahead and try it myself as my GP would think I'm mad for trying it for CFS/M.E. I guess i could just try it and get kidney function tests from my private doctor.

Did the GP present some support for his opinion? Why does he/she think that is madness to take tenofovir for CFS? Is your GP aware of what kind of disease is CFS or is one of those who think that "all of us are tired, myself I am more tired than you,..., you should try some more Gym or drink extra water, take some vitamins, go to a psychologist, etc"?
Also you should look at the prescription of tenofovir and see what are the mentioned side effects there. What are they saying?

 

[heapsreal]

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

 

[heapsreal]

I used tenofovir for several months and felt improvement from it but wasnt fully convinced what was helping so stopped it for several months and cfsme worsened. Currently have been on tenofovir for 9 months and im feeling better for it for sure.

On dr lerners score i was hovering around 6 out of 10, now im 8 or 9 out of 10. Im open to cfsme being a retrovirus but also open to the fact that arvs can strongly modulate the immune system as stated in the article i posted above.

Why it works would be interesting to know but really i dont care how it works, it just does. Waiting on research to prove how something works is just wasting our time as individuals and im willing to take the risks involved. I will say i think the risks of this treatment are low as tenofovir is taken by many people as a prophylactic treatment for hiv. Regular blood work to check general health is important as well as supplements to help protect the liver and kidneys like NAC can help lower risks.

Thats my experience so take it for what it is.

 

[frederic83]

I used tenofovir for several months and felt improvement from it but wasnt fully convinced what was helping so stopped it for several months and cfsme worsened. Currently have been on tenofovir for 9 months and im feeling better for it for sure

Are you taking tenofovir alone or do you have a additional regimen for your CFS ?

 

[sorin]

Currently have been on tenofovir for 9 months and im feeling better for it for sure.

Any serious side effects you noticed in these 9 months? Did you make some test now for liver, kidneys, etc? Did you take previously Valtrex?

 

[unknown virus]

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."
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Did Dr.Ron try to find new viruses? such as new RNA virus.

 

[heapsreal]

Are you taking tenofovir alone or do you have a additional regimen for your CFS ?

I have issues with varicella zoster virus/shingles and probably cmv going by previous years, so for that i take famvir 500mg twice a day. Abx off and on for sinusitis. This regime helps alot.

I have been getting head shingles reactivating every 6 weeks or so which causes bad headaches but i have a treatment plan i use for several days which stops it in its tracks. Lysine, zantac(3days) and cycloferon for 10 days which improves nk and t cell function that helps fight herpes viruses.

Otherwise antioxidants, hormones- dhea, pregnenolone and desmopressin.

Also alternate sleep meds as this has been one of my worst symptoms of cfs and this is helping.

The above has all helped but only so far. The addition of tenofovir has helped my function further.

Im working 4 days a week and the last couple of months i have had to do some heavy gardening to clean up our house after being unable to do so from cfs. This was mostly cutting trees down, its like a dam jungle. So most of my days off ive been putting in 4 to 6 hrs of cutting trees down. Ive also been doing some weight training a couple days a week.

I have the odd night of insomnia which smashes me for a day but quickly recover. But my activity has greatly increased. Im not 100 % of my pre cfs state but im doing pretty good none the less. Im always on the watch for cfs symptoms and may aggressively rest but only a day. If needed do the above virus crash treatment i mentioned above for shingles. Turns things around quickly.

 

[heapsreal]

Any serious side effects you noticed in these 9 months? Did you make some test now for liver, kidneys, etc? Did you take previously Valtrex?

No obvious side effects from tenofovir. I get liver and kidney function tested every 6 months and so far things are good. Ive also been on famvir for approx 7 years.

I do use tenofovir in an alternating type of way. I take a day or 2 off every week. I do this as others i have been in contact with who have used tenofovir successfully have done something similar. This is to help reduce any possible side effects as well as help with cost. There is some research showing arvs in hiv used in this way can be effective and also reduce side effects and cost.

I think nutrients like nac, lipoic acid and other antioxidants help protect liver and kidney function.

 

[sorin]

No obvious side effects from tenofovir. I get liver and kidney function tested every 6 months and so far things are good. Ive also been on famvir for approx 7 years.

I do use tenofovir in an alternating type of way. I take a day or 2 off every week. I do this as others i have been in contact with who have used tenofovir successfully have done something similar. This is to help reduce any possible side effects as well as help with cost. There is some research showing arvs in hiv used in this way can be effective and also reduce side effects and cost.
I think nutrients like nac, lipoic acid and other antioxidants help protect liver and kidney function.

Thank you for your reply. I started to take Valtrex 6 months ago and started to feel better, but not recovered. After 6 months I stopped to take it. Now there are 3 weeks since I stopped that and I am feeling more tired, looks like I am feeling slightly worse without it. I hope that I won't become dependent on Valtrex, since I am not sure what long term side effects can have. Did famvir help in any way for you? Did you decide to take tenofovir because famvir did not help? I am wondering if Valtrex which is mainly an anti herpes drug (anti CMV, HSV, etc) could have an effect against retroviruses as well or it does not have such a large spectrum of action?

 

[heapsreal]

Thank you for your reply. I started to take Valtrex 6 months ago and started to feel better, but not recovered. After 6 months I stopped to take it. Now there are 3 weeks since I stopped that and I am feeling more tired, looks like I am feeling slightly worse without it. I hope that I won't become dependent on Valtrex, since I am not sure what long term side effects can have. Did famvir help in any way for you? Did you decide to take tenofovir because famvir did not help? I am wondering if Valtrex which is mainly an anti herpes drug (anti CMV, HSV, etc) could have an effect against retroviruses as well or it does not have such a large spectrum of action?

I still take famvir and so far no side effects and blood work is good for liver and kidney function. The current herpes drugs wont eliminate the virus but reduce its ability to replicate and reduce viral load. For some once viral load is reduce, their immune sysyem can take over but for many cfsers they are drugs used long term.

I believe dr lerner thought that after several years its possible avs can eliminate herpes viruses??

Most herpes drugs have been studied for long term suppression therapy which is 12 months and shown to be very safe. A good dr would recommend blood work a couple times a year to be safe.

Famvir initially improved me greatly but not sustained. They have helped me keep my head above water and somewhat functioning for sure. Without them i regress quickly.

I dont think they work on retroviruses but reduce viral load of herpes infections allows a stronger attack from immune system on a possible retrovirus. In the book the broken marionette, it mentions famvir having arv effects, this was before the xmrv stuff came out.

Read my link several posts back as it shows another possible way viread may work, through its immune modulation effects. Can reduce certain inflammatory cytokines etc and improve other aspects of the immune system.

 

[a5610183]

Hi, I'm from Shanghai, China. I suffer from CFS (like-HIV). Here we call negative AIDS (yinzhibing). In China there are a lot of patients, and was suppressed, many people eat antiviral drugs to ease and stabilize. Hope that through this forum to get in touch with international friends