Antivirals for MLV-related Viruses (CFS type 1 to 4)

[Hip]

Given that the NIH/FDA paper has identified several MLV-related Viruses in CFS patients, and given that it may take some time before a commercial test is available for these, for people that may want to go ahead and take anti-retrovirals for MLV-related viruses, I'd like to start some literature research and discussion on which anti-retrovirals may work for these MLV-related viruses.

This paper indicates that for MLV-derived replication-competent retroviruses (RCR) - viruses derived from MLV for the purpose of gene therapy - the following drug combination effectively inhibits viral replication:

AZT (zidovudine)
Videx (didanosine)
Crixivan (indinavir)

Whether these MLV-derived RCR viruses are similar enough to the CFS MLV-related viruses type 1 to 4, I have no idea.

This paper (see paragraph 6) says that the experimental new anti-retroviral drug elvitegravir is effective against MLV.

Looking for some expert comments here...

 

[Rrrr]

good find!

also, there is the singh paper

3 meds found to work in vitro (check on the doses, i'm not sure about them!!!!!!!!!)
AZT: 300 mg, 2x/day
Raltegravir (Isentress): 400 mg, 2x/day
Tenofovir (Viread): 300 mg, 1x/day
(all three are covered by my medicare plan: Humana)

This below study by Dr. Singh states that raltegravir is the most effective against xmrv in vitro, and dr coffin and others have told me it is the one with the least side effects in vivo.

here is the article
http://www.plosone.org/article/info:doi/10.1371/journal.pone.0009948

here is the press release
"Anti-HIV drugs inhibit emerging virus linked to prostate cancer and chronic fatigue syndrome"
http://www.aidsmap.com/en/news/7783CFCE-5022-40C8-AE08-0A99D440CAC2.asp



i think we need to all be demonstrating everywhere with signs that say CLINICAL TRIALS NOW. like, how about in front of all the big pharma headquarters?

 

[Rrrr]

someone posted this earlier, don't recall where:

"I was reading Ila Singh's report on her testing different drugs in the test tubes with xmrv. She states that xmrv has limited genetic diversity compared with HIV, indicating less capacity to develop drug resistance mutations, suggesting that 2 drugs may be adequate. It may be possible to take only Ral plus one other antiretroviral drug to prevent drug resistance. I'm probably the only one who didn't see that. It is very encouraging to me because I have been concerned about all the side effects of AZT and Tenofovir. However, Dr. Deckoff-Jones thinks she is doing well because of adding the third drug (Ralt). As you can see I am trying to get my nerve up to take them."
__

separately.... another study

june 2010 paper on 3 antiretrovirals that work to inhibit XMRV
http://www.ncbi.nlm.nih.gov/pubmed/20335265

 

[Rrrr]

dr jamie deckoff and her daughter on antiretrovials:
http://treatingxmrv.blogspot.com/

also on ARV, and getting mixed results:
- phoenix rising's sue/daffodil
- pheonix rising's jimbo (only on raltegravir, and currently off of it)

 

[Rrrr]

and lastly, from joey's post last night:

Mouse retroviruses and chronic fatigue syndrome: Does X (or P) mark the spot?
Commentary by Valerie Courgnauda, Jean-Luc Battinia, Marc Sitbona,and Andrew L. Mason


http://www.pnas.org/content/early/20....full.pdf+html

"As we currently lack postulates to prove a causal association with a prevalent agent and a chronic disease with genetic predisposition, it would also be appropriate to conduct interventional studies. Indeed, the Helicobacter pylori hypothesis of peptic ulcer disease was only accepted after Barry Marshall showed that bacterial eradication with antibiotics cured peptic ulcer disease (21). Studies to gain proof of principle have been performed with antivirals in other chronic, idiopathic diseases linked to retroviral infection, such as primary biliary cirrhosis associated with mouse mammary tumor virus, another possible murine zoonosis (22). Trials using a combination of reverse transcriptase inhibitors led to significant improvements in clinical, histological, and biochemical outcomes in these patients, albeit with some evidence of viral resistance to therapy (23). Such studies are now feasible for CFS, because reverse-transcriptase inhibitors, such as tenofovir and emtracitabine, and the integrase inhibitor raltegravir can inhibit XMRV (24)."

 

[Hip]

Thanks very much for that information, Rrrr.

Regarding the efficacy of AZT, raltegravir and tenofovir against XMRV: I don't know that this implies that these drugs will also be effective against other MLV-related viruses, like CFS virus type 1 to 4. These 3 drugs have only been tested on XMRV, as far as I am aware.

AZT does work for both XMRV and the MLV-derived RCR viruses of the above paper, so AZT may have general efficacy against MLV-related viruses; but AZT is not the most potent of anti-retrovirals, and also AZT has a carcinogen question mark associated with its use.

It is likely that CFS patients that have tested negative for XMRV may nevertheless be infected with other MLV-related viruses, and so raltegravir and tenofovir, for example, might not work for these patients, but some other anti-retrovirals might.

 

[Mala]

I must say that it is good to have a protease inhibitor (indinavir) that potentially will work in ME-patients if they have MLV. I believe protease is the key to why we feel so bad.

 

[heapsreal]

i have read famvir have antiviral has properties but also anti retroviral properties, one place i read this was in the book, 'reviving the broken marrionette', can anyone back this up as there are a few cfsers getting good results from this drug which is quite safe for long term tretament.One infection not supposed to respond to famvir is hhv6, i have read several stories of people on famvir and their titres to hhv6 have gone down. This drug seems to be alot safer then alot of other drugs on the market.

cheers!!!

 

[Daffodil]

hi heap. i did read that acyclovir has some effect on HIV.

sue

 

[Daffodil]

i just read about a lady who almost had kidney failure on crixivan. i am really not looking forward to going through all of these drug side effects, especially the part where you lose fat in your face.

this is a lot to take in.

 

[nventor]

I have been taking Imunovir and (Famvir, which I noticed an immediate positive response to) for about 5weeks, HHV-6 titres came down somewhat in last weeks blood work, I feel somewhat better, but maybe lost a little ground in last several days.

Regards,
Roger

 

[Rrrr]

i think this is an important thread. let's keep the research going!!

 

[katieann]

3 meds found to work in vitro (check on the doses, i'm not sure about them!!!!!!!!!)
AZT: 300 mg, 2x/day
Raltegravir (Isentress): 400 mg, 2x/day
Tenofovir (Viread): 300 mg, 1x/day
(all three are covered by my medicare plan: Humana)

!! This is Great news about medicare and humana. It's what I have as well. But I was on the web site, trying to search for tenofovir and raltegravir and it kep showing up blank. It was so aggravating! So, thank you for this... now I know I can possibly be able to go on a persoanl test trial if and when I and my doc decide to!

even though I was tested and XMRV was found, I plan on getting retested, to assertain what strain I have (mlv's). Then I will consider and start the research on which ARV's might be more effective than others.

Until then, although my primary doc is Very supportive, she is not an infectious disease specialist, and although she treates HIV patients, she is not comfortable with prescribing the ARV's... yet. I am sure she'd be very supportive of what I decide to do.

But, I know need to consider where to find an open minded infectious disease doctor. I am in Colorado, but will travel to see one if I cannot find one closer to home (Within 300 miles or so).

If anyone has ideas, please email me? Is there an 'underground' list of open minded docs interested in helping us? =p

Thanks Rrrr!!

 

[acer2000]

Does anyone know the tissue penetration of these drugs? Esp the ones not in the singh paper? I'd be curious which ones have CNS penetration.

 

[Hip]

i have read famvir have antiviral has properties but also anti retroviral properties, one place i read this was in the book, 'reviving the broken marrionette', can anyone back this up as there are a few cfsers getting good results from this drug which is quite safe for long term tretament.One infection not supposed to respond to famvir is hhv6, i have read several stories of people on famvir and their titres to hhv6 have gone down. This drug seems to be alot safer then alot of other drugs on the market.

cheers!!!

Hi heapsreal. I cannot find any refs about Famvir (famciclovir) having anti-retroviral activity. Can you remember where you read this?

 

[Daffodil]

acer...here is a chart:

http://www.thebody.com/content/content/art54535.html?getPage=4

 

[gregf]

i just read about a lady who almost had kidney failure on crixivan. i am really not looking forward to going through all of these drug side effects, especially the part where you lose fat in your face.

this is a lot to take in.

Hi guys,

I am on side here about XMRV/MLV and ME.

But my understanding is that they can be very damaging to the liver and other organs. :worried:

And also, ARV treatment usually requires a mix of drugs that changes over time to be effective.

Considering the risks, we really should not be experimenting with this.
And we should be careful what advice we give or even imply in this place.

I wonder if we can get some expert opinion on this.

Greg/Australia/ME 5 years.

 

[Lanya]

I've been on Immunovir (also spelled Imunovir sometimes) for several years now and it really seems to help. Also been on low does Valtrex on and off, but that doesn't seem as clearly helpful. Neither one has brought my EBV or CMV titers down significantly.

Immunovir is an immune modulator, not an anti-retroviral. Does anyone know if it has ARV properties?

 

[calzy]

Dr. Klimas told me yesterday, she will not include AZT in her protocal when its established. AZT affects the mitochrondia (sp). and we are already deficient in that area.

 

[Daffodil]

gregf...i understand your point but i think you would have a different point of view if you were at end-stage CFS and every minute was agony. most doctors are recommending 3 drugs which should be enough for XMRV, which does not mutate quickly like HIV.

calzy..thanks for that info. wonder what she will use considering we need 3 meds. perhaps she is waiting for a newer drug to become available. i heard she is also working with a drug company.