hiv like virus

[chris123]

could xmrv be the new hiv like virus
has anyone had hiv symptoms and tested negative

 

[ukxmrv]

Chris, do you mean negative to HIV? I had 2 HIV tests at various time - both negative. I've also been tested for HTLV. Postive for XMRV plus other viri.

 

[chris123]

i had all hiv symptoms but test negative? is xmrv sexually transmitted. what is htlv

 

[chris123]

xmrv

i feel life is over

 

[Esther12]

Hi Chris. The research around XMRV is pretty ambiguous right now. I don't think it's a good idea for people to feel too hopeful, or too depressed about it. Good luck.

 

[sleepy237]

Feelings are hard Chris. I empathise but life isn't over. There is hope. Hang in there. Drop by chat there is support around. Take care ~Sleepy

 

[Daffodil]

they'll probably cure this in 10 years with IL-7 or something. hang in there. its very different from HIV

 

[ukxmrv]

Chris, there are lots of things that could cause HIV type symptoms. Plenty of people find things that work for them. Even if it is another retrovirus we will get treatment eventually.

Don't give up. Start a thread introducing yourself and your symptoms, someone here may be able to help.

 

[*GG*]

i had all hiv symptoms but test negative? is xmrv sexually transmitted. what is htlv

I believe this is what HTLV stand for: Human T-cell lymphotropic virus

I believe it is more prominent in Japan. Not very familiar with it otherwise.

Try to keep your chin up, get more educated and start trying to figure out will help you now and in the future. How is your Vitamin D? Do you do fish oils? You probably have lots of inflammation, cannot usually be seen, so you should look into natural supplements that will help tamper that down.

GG

 

[chris123]

ukxmrv
how did you get xmrv

 

[chris123]

not many places test for xmrv in aus
and apparantely if your positive there is no treatment because not much is known about it

 

[Sushi]

not many places test for xmrv in aus
and apparantely if your positive there is no treatment because not much is known about it

Not sure if there is a test available in Aus. The Aussies will know. Most of us who have tested positive (including me) were tested in the States or Belgium. Most of us have no idea how we got it as they don't know exactly how it is transmitted. For sure in blood though.

While there are no approved treatments there are experimental treatments and if the research in the next 6 months pans out, the drug companies are going to be on it fast--actually some of them already are. They think that this is a much more simple group of retroviruses than HIV (and it is a group though people often say XMRV). They also don't really know its role in disease or lack thereof!

So this is not a sinking ship--chin up.

Best,
Sushi

 

[heapsreal]

not many places test for xmrv in aus
and apparantely if your positive there is no treatment because not much is known about it

if theres not too many places that test for xmrv, i wouldnt mind knowing just one.
I didnt think there was anywhere in australia to get tested???

 

[ukxmrv]

Chris,

If you read the other threads on this forum you'll see that lots is already known about XMRV and MLV's. It seemed like every day there a new paper was presented. We are having a summer lull now I think.

Some aussie patients are already getting tested through a doctor that Prof Meirleir knows in Melbourne. Blood is being sent for testing to Redlabs in Belgium. I know of several aussies who have been able to travel abroad for testing. All comes down to money and strength of course.

Several different anti-retroviral drugs have been tested invitro and shown to inhibit XMRV. Patients are already starting antiretroviral treatment and using other things. Early days. We need proper clinical trials of course.

 

[heapsreal]

ok, i know people have been sending blood over seas for testing but it is rediculously expensive from australia and yes then treating it off label with hiv drugs is expensive too. If i could afford it would i do it, hell yeah!

cheers!!!

 

[ukxmrv]

Heapsreal, agree about the costs.

You'll need to get an Aussie lab interested in doing the test.

Cipla the indian company make generic ARV's for HIV+ patients in India. Some of them are the ones tested invitro for XMRV. There will be companies that will make new generics for this new market as well.

We still need proper clinical trials from the major companies. Dr Mikovits is in talks.

 

[heapsreal]

I have seen AZt at low prices but not sure about it as i think its going to take a combo and azt can be nasty, plus i would have to find a doc willing to treat and monitor me. I have used cipla antivirals so i can vouch for them.

cheers!!!

 

[ukxmrv]

That's what I am doing Heapsreal. Learning as much as I can, taking note of where to get what and following the progress of other patients on ARV regimes to see how they get on (plus all the other possible ways of maybe treating xMRV). Lots to keep me occupied.

 

[heapsreal]

so are u considering AZT only treatment or waiting and looking into what combo's to use?

 

[ukxmrv]

I'll wait and see what combos of ARV's plus what other "not ARV" drugs are available. AZT doesn't bother me as I had HIV+ friends on it. The dosages are a lot less now.

I'd rather wait for a while and watch others progress. I'm cautious after decades of trying treatments and being harmed by even some of the more conventional of them. I'm sensitive to drugs anyway.