New Update From Dr. Jamie: XMRV and antiretrovirals

[shannah]

entitled 'Hard Truths'

http://networkedblogs.com/cpl53

 

[shannah]

Disappointing. Hopefully there's something else waiting in the wings.

 

[LaurelW]

That was my experience with Ampligen too--I got so much better, but still got PEM, although it took a lot more to trigger it and I got over it much faster. But I'll take that over being this sick and feeling like I have PEM 24/7.

 

[Jemal]

Thanks for posting.
Too bad antiretrovirals don't seem to be the silver bullet for now. It would be wonderful to just take some pills and be done with it.

 

[lancelot]

Sorry to hear her PEM like that. hopefully, that doesn't set her back too long.

The current 3 ARV's used in HIV may not be the silver bullet for XMRV+ PWC, but an ARV made specifically for XMRV/MLV's may be....

 

[Jemal]

The current 3 ARV's used in HIV may not be the silver bullet for XMRV+ PWC, but an ARV made specifically for XMRV/MLV's may be....

Yeah, that's true. But it would be nice if they could just subscribe antiretrovirals that are already on the market. Developing something that works specifically against XMRV / MLV's might take another 5 to 10 years.

 

[eric_s]

It must be possible to speed this entire process up. Like that fact that we are now 1 year after Lombardi et al. and it will probably still take half a year until we get results from phase III of the XMRV SRWG. Such timeframes, like the one you mentioned, are not acceptable. I really hope if we all contribute, we could accelerate things.

 

[urbantravels]

There are a lot of antiretrovirals that were developed for HIV that turned out not to work for HIV but are still "on the shelf." Some of those might turn out to be useful against XMRV, and some have at least passed Phase I trials so would be starting at first base.

That's assuming that antiretroviral drug therapy is even going to turn out to be what we need.

 

[Cort]

I certainly applaud her honesty. Symptom presentation is obviously not sufficient for telling who is XMRV positive or not (see - me; quite functional testing positive while others with worse symptoms do not)...everythings a little trickier than one would wish.

I guess the fifty dollar question is what does it mean that these antiretrovirals are really not working well at all. Should we expect that if AZT and the other drugs knock XMRV out in a test tube that it would necessarily do so in the body? IS that a reasonable expectation? or Not? If it is then the XMRV theory is hitting a big snag. If it isn't reasonable then maybe its a matter of finding ARV's that work really well with XMRV and the attendant viruses that are there in the body....I know that there is a big jump from the test tube to the body....AZT has already made that jump with AIDS....does it mean it should make that jump with XMRV???

What if replication isn't the problem? Dusty Miller said all the virus had to do was put out proteins....to have an effect. Would AZT effect that? I would guess not.

 

[Sushi]

I certainly applaud her honesty. Symptom presentation is obviously not sufficient for telling who is XMRV positive or not (see - me; quite functional testing positive while others with worse symptoms do not)...everythings a little trickier than one would wish.

Because of this, KDM is doing stomach biopsies on patients who test negative, when he thinks they should be positive. He is getting more positives this way. Just more data that blood testing isn't completely accurate and the bugger is hiding in other reservoirs.

Sushi

 

[mojoey]

Thanks for that bit Sushi. That guy is one proactive son of a gun.

 

[eric_s]

This is interesting, i've never heard about that before. I would like to see some data about those tests one day...

 

[Cort]

Because of this, KDM is doing stomach biopsies on patients who test negative, when he thinks they should be positive. He is getting more positives this way. Just more data that blood testing isn't completely accurate and the bugger is hiding in other reservoirs.

Sushi

Reminds me of Dr. Chia - having difficulty finding enteroviruses in the blood and then finding them in spades in gut tissues....A CAA study is examining the 'microbrial biome' of CFS patients guts but I guess that is bacteria....

 

[mojoey]

Interesting you mention Dr. Chia. Rumor has it he's looking more into retroviruses now. Remember when XMRV news first came out, he was quite adamant about enteroviruses being the end all be all? I wonder if Dr. Hyde will ever change his mind, since he's so big on enteroviruses too.

Reminds me of Dr. Chia - having difficulty finding enteroviruses in the blood and then finding them in spades in gut tissues....A CAA study is examining the 'microbrial biome' of CFS patients guts but I guess that is bacteria....

 

[shannah]

Because of this, KDM is doing stomach biopsies on patients who test negative, when he thinks they should be positive. He is getting more positives this way. Just more data that blood testing isn't completely accurate and the bugger is hiding in other reservoirs.

Sushi

I wonder if KDM has been attending the latest talks and is privy to some unpublished information, consequently zeroing in on the gut. I know in the You tube sessions of the Norway/Sweden talks that were recently pulled down there were some remarks made suggesting such.

 

[Sushi]

I wonder if KDM has been attending the latest talks and is privy to some unpublished information, consequently zeroing in on the gut. I know in the You tube sessions of the Norway/Sweden talks that were recently pulled down there were some remarks made suggesting such.

I'm sure he is privy to more information than is being published, and he is also doing his own research--which he leaked a bit after those British articles. He was also on the faculty of the Univ of Nevada med school for 3 years so is in touch with the WPI researchers.

He does a lot of gut testing and does treat that along with XMRV.

Sushi

 

[lancelot]

Interesting you mention Dr. Chia. Rumor has it he's looking more into retroviruses now. Remember when XMRV news first came out, he was quite adamant about enteroviruses being the end all be all? I wonder if Dr. Hyde will ever change his mind, since he's so big on enteroviruses too.

A great doctor will always change their mind when presented with the facts. KDM changed his mind after initially sounding off against XMRV as a cause to CFS because he was still holding onto has H2S baterium theory. Peterson, Bell, and Cheney have all changed their minds dozens of times over 25years. If doctors and researchers held on to their initial theory, we would have gone nowhere(ie: dr. amand) or worse-hurt patients(ie: UK, Weasel).

Unfortunately, it's this evil human mental illness called big ego's that hurt humanity for personal gains.

 

[urbantravels]

If Dr. Chia is broadening his approach I might just consider going to see him. He's the one CFS doc of any repute here in LA, but I've been hesitant to try and see him because I felt his enteroviral theories were too narrow.

 

[lancelot]

If Dr. Chia is broadening his approach I might just consider going to see him. He's the one CFS doc of any repute here in LA, but I've been hesitant to try and see him because I felt his enteroviral theories were too narrow.

Me too. if he can broaden his practice to include XMRV/MLV's, i would go see him even with a 3-4 month waitlist.

 

[Snow Leopard]

A side note, I can confirm the LAX wheelchair service is rather excellent.