Anti-Virals working for XMRV?

[Yawn]

Hi,

Sorry but I am too brainfogged to read the long threads on anti virals. Could anyone possibly sum up for me which if any have ben used and are showing positive results?

Thanks evaso

Yawn x

 

[Daffodil]

hi yawn. people are taking some combination of Raltegravir, Tenofovir, AZT, and Lexiva. some are on 2 drugs, some 3, and some 4.

the results so far are mixed. its a lot of up and downs. i was on 3 drugs but the AZT caused me a lot of cariac issues so recently stopped it.

i would say i am better on the drugs. my condition was very severe.

by the way, i have not yet tested positive for the virus.

best of luck
-S

 

[MEG]

Yawn....absolutely love your name for the forums! Oh, can I identify with that.

 

[MEG]

Yawn,
My first post went into cyber heaven~

I am taking Valtrex, twice daily. I was in horrible condition prior to the med....mostly bedbound.

I am now up and around the house. My husband felt I was improving after only one week! Since I still feel awful, he is a better barometer than I am.

I made bread last week, and cleaned a toilet!!!! Feel more "alive". I believe the antivirals are worth a try. Anything since we are so ill. I am also on oxygen, 2Liters/min. The doctors have NO explanation why my lungs are failing....no asthma, no COPD, No restrictive airway disease...just good ole CFS.

Take care of yourself....
~M~

 

[Esther12]

Hi Yawn.

It seems like only a few people have tried taking them (that we know of) and results seem mixed so far. Seeing as it's really just a collection of anacdotes, in the absence of consistent and dramatic improvements I'd accept that we're utterly clueless on the topic for now - there seems to be a general trend towards improvement for those on ARVs, but there are too many confounding factors.

There has been some talk of clinical trials taking place soon... but I wouldn't expect to be better by Christmas.

 

[grant107]

Meg, what dosage of valtrex are you on. I am taking one gram a day and I am in my seventh month. I have had a slight improvement. I am considering increasing my dosage but I get sick if I take 1.5 grams.

 

[Yawn]

Thanks for the replies,

Have the WPI put forward any recommendations? I guess not if people are trying different medications. Also am I right in thinking that you have to be closely monitored while on anti-virals?
It would be interesting to know if peoples viral load drops while taking them etc?

 

[omerbasket]

The 4 FDA approved drugs for HIV infection, which have been shown in studies to be efficient against XMRV in vitro (in a test tube or something like that) are: zidovudine (AZT), raltegravir, tenofovir and adefovir.

 

[omerbasket]

Thanks for the replies,

Have the WPI put forward any recommendations? I guess not if people are trying different medications. Also am I right in thinking that you have to be closely monitored while on anti-virals?
It would be interesting to know if peoples viral load drops while taking them etc?

1) The WPI didn't put forward recommendations about taking antiretrovirals. However, they really want to do clinical trials with such drugs.
2) You're right, I believe - you have to be monitored by a doctor, and I guess that would be twice as true if you'll have significant side effects.
3) Well, there almost haven't been studies about viral load drops with antiretrovirals (regarding XMRV) until now, but there is one interesting study that was performed by the WPI and the NCI, as well as by an oncologist who has Chronic Lymphocytic Leukemia (CLL) which wasn't treated for 3 years, and also have CFS. He started taking antiretrovirals (AZT, soon after that raltegravir, and I think that in some point also tenofovir) and there seems to be some improvement in his cancer measurments (still not enough time and not clear enough to tell that this is a real improvement) and there is also what seems as a big improvement on measurements of cytokines and chemokines that are realted to ME/CFS. He also feels better, and it's just 100 days (not long enough, I believe). Regarding your question, an interesting thing in that study was that before the study XMRV was detected in that doctor in his plasma and CLL cells, and after 100 days and infectious XMRV dissapeared.

You can see details about this study in the following PowerPoint file:
http://files.me.com/jdj88/p4f821

 

[urbantravels]

I think this thread needs to be more clear about the distinction between antivirals and antiRETROvirals. Different drugs with different targets.

 

[ahimsa]

I think this thread needs to be more clear about the distinction between antivirals and antiRETROvirals. Different drugs with different targets.

Thanks, urbantravels, that's just what I was thinking! Anti-viral drugs and anti-retroviral drugs do seem to be quite different categories but I don't have a clue about any more details than that.

Just as a curious side note, I remember that I was given a trial of one anti-viral drug about 19(?) years ago. This was during my initial post-"flu" onset, when I had no real diagnosis and they were thinking it was some kind of general post-viral syndrome. I looked up that drug that I tried so many years ago (amantadine, brand name symmetrel, which didn't really help me much). The information I found ( http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000564) mentioned that this drug is used for Parkinson's symptoms as well as for its antiviral properties:

Why is this medication prescribed?

Amantadine is used to treat Parkinson's disease and conditions similar to those of Parkinson's disease. It also is used to prevent and treat respiratory infections caused by influenza A virus.

I never would have thought that the same drug would be listed as helpful for influenza A and for Parkinson's disease--but then I know nothing about how drugs work!

 

[Francelle]

Do you mean antivirals or antiretrovirals? Aren't they different? That was my question and now I notice urbantravels has asked the same thing I was about to post!!!

 

[Daffodil]

yes antiretrovirals target retroviruses..antivirals is a general term for all drugs that act against viruses

 

[natasa778]

I am taking Valtrex, twice daily. I was in horrible condition prior to the med....mostly bedbound.

I am now up and around the house. My husband felt I was improving after only one week! Since I still feel awful, he is a better barometer than I am.

Meg, could you share how much valtrex you are taking? any other rx meds alongside valtrex?

 

[omerbasket]

yes antiretrovirals target retroviruses..antivirals is a general term for all drugs that act against viruses

Correct, and technically it is right to say that "antiretrovirals" are really "antivirals", because they are a subgroup of antivirals. It won't be correct to say that "antivirals" are really "antiretrovirals". Anyway, the most accurate thing to say here would be "antiretrovirals", altough, who is to say that we won't find that some drugs that are not considered today as antiretrovirals would be efficient against XMRV? I mean, doxycycline is an antibiotic, but it also has an antiretroviral effect...

 

[shannah]

altough, who is to say that we won't find that some drugs that are not considered today as antiretrovirals would be efficient against XMRV? I mean, doxycycline is an antibiotic, but it also has an antiretroviral effect...

Yeah, interesting isn't it. I've always wondered about vermox. My son did so well on that for the 3 days he used it. Apparently it's highly toxic though. I've always meant to try a 3 day experiment on myself to see what the effect was and just haven't gotten around to it with all the other things I'm constantly experimenting with. One of these days ...