UK Childhood Onset - Negative Culture for XMRV

[Katie]

I got my results over the phone this morning and I'm negative by the new improved culture.

I'm not sure what to make of it, it's hard to muster up and emotion first thing in the morning that doesn't relate to how much I love a warm duvet on a cold morning, but I think I'm ok. This is one step of thousands that we're all going to take while we investigate XMRV and its potential link to this confusing disease.

I'll be having the antibody test in the spring so they'll be more news from me then.

I'm not telling family until Monday when they next expect news as I'm going to take a few days to absorb and process before I get their take on things.

 

[ukme]

Hope you're ok, it's one of those things that is difficult to know if it's a 'good' thing to have or not, given it's near impossible to get rid of. Take care x

 

[flybro]

Big hugs Katie,

They should rename this the seasaw sickness the amount of ups and downs we go thru.

Thanks for keeping us posted.

 

[Jenny]

Thanks for letting us know Katie - you have a next step - another test in the spring, so that's good to keep in mind.

It's such early days in testing - some of us have been through similar testing controversies and uncertainties with testing for Lyme. Lyme tests have been around for decades, and there are still heated arguments about the accuracy of tests.

Jenny
:Retro smile:

 

[Adam]

I've thought about you every day since your blog - wondering when you would get some news. Hope you are dealing with it OK. Maybe speak in chat. Take care Adam

 

[Abraxas]

I've thought about you every day since your blog - wondering when you would get some news. Hope you are dealing with it OK. Maybe speak in chat. Take care Adam

Likewise Adam. Thanks for sharing Katie.

 

[froufox]

Thanx for posting Katie and hope you're adjusting ok to your news - I know how you feel! Its such a rollercoaster ride. Lets see what happens with the serology test, it should be in a few weeks time hopefully so not too long to wait.

Take care

 

[fds66]

Have been thinking about you waiting for these results. Sounds like you have more of a wait for your serology results. Glad you have these results now. Don't know what to wish for you really - perhaps just strength to deal with whatever your results are now and whatever they may be in the future.

 

[Alexia]

Thanks for sharing your results Katie. People like you who took the risk of having the XMRV test without the serology test are having a difficult time because if negative there is a lot of uncertainty but soon you will know for sure. I admire all of you who had the courage to have the test even knowing that it can be a false negative and then the waiting time is long. But it seems the serology will be ready in some weeks and then you will know for sure.
Good luck,

 

[Min]

Thanks for posting Katy, either result would have been difficult for you. There is so much we should be learning about XMRV here in the UK, but it's existence just being covered up.

 

[Gerwyn]

I got my results over the phone this morning and I'm negative by the new improved culture.

I'm not sure what to make of it, it's hard to muster up and emotion first thing in the morning that doesn't relate to how much I love a warm duvet on a cold morning, but I think I'm ok. This is one step of thousands that we're all going to take while we investigate XMRV and its potential link to this confusing disease.

I'll be having the antibody test in the spring so they'll be more news from me then.

I'm not telling family until Monday when they next expect news as I'm going to take a few days to absorb and process before I get their take on things.

I,m sorry but I'm glad because you may have had it but you dont now.I have seen some stuff which suggests transient gammaretrovirus infections in animals.You were very brave to take the test and you have my very best wishes

 

[Katie]

Thanks everyone for your kind and heartwarming replies, it's certainly made this journey one I'm happy to share. It's ever so odd that I really don't feel disappointed or happy. I just feel peaceful and thankful that this result isn't hanging over me anymore and I feel strong to wait for the antibodies. I knew this was experimental so I knew what I was letting myself in for, no guarantees. I'm a little disappointed in the sense that I thought I couldn't help more by providing blood and tissue samples and do my bit for the XMRV investigation but other than that I'm ok.

You know, I'm probably going to accidently break a cup in a week or two and absolutely flip out, cry and rant! I'm sure that's healthy.

 

[usedtobeperkytina]

Katie, the reason you may not have reacted emotionally is because our brains have a built in mechanism, caused denial. Even if we know something, the reality of it sinks in slowly so we can take it without going over the edge. It's like the brain knows what it can take and when.

I hope the ultimate answer is what you are looking for.

For me, I am waiting. As Klimas said, I don't think I could take a piece of paper saying "negative" at this time, even if I know it could be a false negative.

Tina

 

[Kati]

Katie, I feel like you would like to know a reason why you've been sick all these years. It is hard to be patient in these times, but we must wait for all the tests to be available and hopefully you will be eligible for the WPI study coming up (hope that UK can send timely samples).

In the meantime we can be part of the negative club- :Sign Peace:

 

[_Kim_]

Katie, I feel like you would like to know a reason why you've been sick all these years. It is hard to be patient in these times, but we must wait for all the tests to be available and hopefully you will be eligible for the WPI study coming up (hope that UK can send timely samples).

In the meantime we can be part of the negative club- :Sign Peace:

One more from the -ve club here to say that I know. I know.

Waiting sucks. And getting a -ve result just means more waiting.

We can handle anything but uncertainty. Limbo is the most torturous place to be in.

You're probably right about delayed anger. I got my results over a month ago and just this week threw a fit about it.

Big hugs to you, dear Katie. You're not in this alone.

 

[Hope123]

Thanks for posting your results, Katie. Aside from the serology test, I would advise you to not give up on donating blood or tissue to the WPI (or any future CFS biobank). First, tissue diagnosis is generally a more accurate way to go than blood tests but avoided because of its sometimes invasive nature and difficulty of preparation. So what's not found in blood could be found in tissue. Second, the WPI and hopefully other groups are focused on finding the causes of illness for these conditions, whether it be XMRV or something else for people. XMRV is the focus now but I don't think it's the sole one.