For the XMRV +; What are you upto?

[leaves]

Hey all,

I guess by now there must be quite a few XMRV+ people around. How are you all doing with this waiting? Are you like me not handling it very well? have you found any medicines (besides antiretrovirals) that help you?
I decided that I want to start taking antiretrovirals in December, then one year has past since my diagnosis, and if science hasnt catched up by then, my patience has run out.
Anyway just wondering about you all, and in need of some survival tips.
:sofa:

 

[Rafael]

I'm lucky because I've been riding a remission of sorts this past year...
So I don't feel as pressed to do something/anything immediately.
But I remember well the long time where I would have tried anything.
I am wondering why there aren't more XMRV+ folks showing up on the polls and surveys on PR ??
I did the XMRV + survey but haven't seen any stats yet (someone please direct me if I am missing stuff).
I was wondering about whether I should be discreet about being XMRV+ and then I decided that doing so actually builds "Stigma"..
... so now I tell everyone, I said it on a local radio show, I wear it like a badge.
Maybe I'll change my PR Profile to State = Positive (maybe it'll feel like having a title like Dr. or Sir) Watch out - I'm dangerous.
Publish that thing or I'll spit in some coffee mugs

 

[hensue]

where is the survey that we all took the positives and not postives? What happen to it? It could be vital in the research or subsets as they say.
I am positive and for some reason I have done nothing yet. Battling the heat and high blood pressure med that is making very fatigued.
Get that under control and maybe go to something real soon.

 

[jane doe]

Hi, Hey I just decided to take the xmrv blood test with vip a week or so ago, VIP told me they don't recommend one type of test over the other, they are both good in dif ways. So I decided to suck it up and pay more out of curiosity plus I was worried they may get deluged if the study comes out.

I am curious though, could you guys remind me --if the test comes back neg does that not nec. mean that I dont have xmrv? can it miss it? hensue didnt you have to take it a couple times? I want to be prepared in case it is neg what I should do, in a way I want it to be positive as at least will have the start of an answer and direction. A couple of years ago I took their comprehensive cfs profile at then redlabs and it did show nk cell abnormality etc like that seen in cfs, so odds seem to be......

 

[ZoeHines]

publish that thing or i'll spit in some coffee mugs

raoflmao love it!!

 

[*GG*]

Hi, Hey I just decided to take the xmrv blood test with vip a week or so ago, VIP told me they don't recommend one type of test over the other, they are both good in dif ways. So I decided to suck it up and pay more out of curiosity plus I was worried they may get deluged if the study comes out.

I am curious though, could you guys remind me --if the test comes back neg does that not nec. mean that I dont have xmrv? can it miss it? hensue didnt you have to take it a couple times? I want to be prepared in case it is neg what I should do, in a way I want it to be positive as at least will have the start of an answer and direction. A couple of years ago I took their comprehensive cfs profile at then redlabs and it did show nk cell abnormality etc like that seen in cfs, so odds seem to be......

From some of what I have read, perhaps you will not test postivie if you are more functional than not, I mean if you are really sick in bed-type then you will probably test postive. Just my take on the very limited reading I have done on the subject.

I have not had the test done, but hope to have it done in the very near future!

 

[LaurelW]

Hi,

That's what some people say, but I'm not sure it's always true. I got tested last year from my banked blood that was taken in 2005 within a month or two after I had been on Ampligen for a year and a half, and I was feeling 75% of normal, in other words, pretty decent and functional. And I came out XMRV+.

I've also heard that if you come up negative you may not end up being negative in the end, but if you're positive, you are probably definitely positive. I can't wait till they've got all this sorted out. I'm not fond of having a retrovirus (forever) but I sure want a cure and this it seems to be our best hope right now.

 

[Cookie Monster]

I was wondering about whether I should be discreet about being XMRV+ and then I decided that doing so actually builds "Stigma"..
... so now I tell everyone, I said it on a local radio show, I wear it like a badge.
Maybe I'll change my PR Profile to State = Positive (maybe it'll feel like having a title like Dr. or Sir) Watch out - I'm dangerous.
Publish that thing or I'll spit in some coffee mugs

Thanks for posting your thoughts on this Rafael and i too did pmsl at the last line :Sign Good one:

CM

 

[spacee]

Hey....I'm a newbie here (from ProHealth)

I'm going to get tested for XMRV end of August, first of Sept. A large part of the reason
is that if this virus is in the DNA, then my kids need info on it, if they get sick.

I don't think that I will be telling anyone in my small, rural town that I have it....IF
I do.

Glad to be seeing familiar 'monikers'. I have missed you guys!

 

[hensue]

Hey Jane,
No I did not take the test a couple of times. I took the test I think it was the second actual round of testing for xmrv in October and everything was new as far as sending out test. I had to wait longer than expected they were deluged with people wanting the test.
I kept in touch by email and Margureite at Vip kept me posted. Vip was taking a lot of precaution and at first my test came up inconclusive. After a couple of days I had an email Dr Lombardi himself was doing my blood test.
I forgot how long it took but by Christmas I new I was a def positive.

More people on here can tell you about false negatives. I was told if you come up positve forget ever being retested it would be positive.

I am like you when the study comes out everybody will want the test! Good luck

I know VIP took there time and were very cautious about testing. That I am glad of and knowing Dr Lombardi did my actual testing helped my feelings.
I have never been tested for the nk cell abnormality etc.

I hope that helps at all Jane. Post it as a question on the first thread and let false postive be your topic. A lot of very smart people on this board.

 

[jane doe]

thanks hensue for the info and encouragement, did you get the test as an individual or part of a study?

and welcome spacee, I think your plan on keeping your results on the downlow make sense until we see how this all plays out with xmrv....

 

[hensue]

I was not part of the study, it was right after everything was published in Science. Just knew I had it did not have the diagnosis of chronic fatigue just fibromyalgia. Diagnosed my own cfs it is all so similar.
Spacee so glad to see you on here. Keep us posted.
Susie

 

[katieann]

I'm going to get tested for XMRV end of August, first of Sept. A large part of the reason
is that if this virus is in the DNA, then my kids need info on it, if they get sick.

I don't think that I will be telling anyone in my small, rural town that I have it....IF
I do.

Glad to be seeing familiar 'monikers'. I have missed you guys!

Yeah, about that rural town thingy. I live in one with less than 900 people, the majority of the population being outside the city limits in ranch country. It's a difficult thing, and I wasn't sure what I would do. In the end, since I volunteer IT expertise to the local library, and since if I had children, I would want to know, I did let the library administrator know, and left it completely up to her if she wanted to continue having me do the IT work for her. She appreciated my candor, and was in no way freaked out etc... so I went ahead on in and fixed up their network. Of course, I haven't heard from her since... :tongue: But I am still cool with the fact that even if they do feel ... cautious, I am very ok with that as well.

Not sure if and who I will tell, I am so sequestered that I rarely have a need to tell anyone.. anything. But if anyone asks, I would tell them, if only for them to understand the dangers to them via the blood bank, and to let them know they might wanna consider banking personal blood for emergencies. That and to help them understand the appx. percentage of controls in our population that could be walking around with it and not know it. O yeah, and that to run away from anyone with an acute respiratory infection (especially the kids).

 

[leaves]

Hey all, thanks for all the replies
Hmm yeah it is weird eh, being positive for a disease noone knows about. Also these little things are so complicated; if someone asks me to taste her/his drink or food i dont know what to do or to say, beceause I dont know if i could infect the person. I guess I will just fake a cold. Or when i meet a cute boy ... I guess kissing is of limits too...

 

[VillageLife]

Leaves your so brave and dealing with this so well. big hugs xxxxxxx

 

[leaves]

Awww

Thank you sweetie We are all quite brave people here i'd say.
Big hugs back!
xoxox

 

[grant107]

I tell people I have a virus that is causing CFS. No one ever asks what kind of virus. If I said I have XMRV most people would not know it is a retrovirus.

 

[ukxmrv]

I am XMRV+ and it has been a rollercoaster of emotions since the Science paper was published. My test was through VIPdx and quite quickly so I have had months to come to terms with being positive. It's been very hard.

At the same time I look at the evidence and read all the points of view. Causality is not proven but for once I have some hope. My husband said to me "and you never thought the cause would be found in your lifetime".

After 27+(approx because I can't add up years right now) of an unrelenting and often very severe level of disability my life (apart from my husband, mother and other family members) was largely not worth living. I would have killed myself years ago if it was not for them.

Since the news and my positive test, I have read all that I can on recovery and treatment. At the moment I feel the hope and also an incredible impatience to get some treatment and hopefully a life back again.

 

[Tia]

Maybe I'll change my PR Profile to State = Positive (maybe it'll feel like having a title like Dr. or Sir) Watch out - I'm dangerous.
Publish that thing or I'll spit in some coffee mugs

LOL! That cracked me up!

 

[Tia]

Hey all, thanks for all the replies
Hmm yeah it is weird eh, being positive for a disease noone knows about. Also these little things are so complicated; if someone asks me to taste her/his drink or food i dont know what to do or to say, beceause I dont know if i could infect the person. I guess I will just fake a cold. Or when i meet a cute boy ... I guess kissing is of limits too...

But Isn't it just contaigious when inserted in your bloodstream? Therefor, saliva should be no problem, right? Like HIV: saliva is ok but blood is contaigious.