Goodbye to It's All in Your Head: XMRV Positive

Lynn

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I received the serology results today. The test was positive. It is good to be able to have a reason for this kind of existence.

I think it will take me a few days to get used to the idea. I am most looking forward to telling my mother about it. She couldn't figure out why I didn't just buck up.

I sure hope there is treatment soon. I would like to get my life back!

Lynn
 

shannah

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So sorry Lynn but also congratulations!
(You know what I mean.)

Yes - bring on the treatment folks!
 

Lynn

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Yes, it took ten weeks for the results. VIPDx is overloaded. Someone at their office told me that they had received 2000 samples.

I am also glad the waiting is over. I think that although a retrovirus is ominous, it is good to think that there may be treatments in the near future.

Shannah, thanks for the congratulations. It brings hope!

Lynn
 

eric_s

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I'm glad for you too. I still have not taken the test. A bit afraid of how it would be, if i get a negative result and also i want to wait until we know more and there is maybe an approved test and insurance will cover it. So far, there's probably nothing i would change after a positive result, i don't want to take antiretrovirals at this point, but it certainly makes a big difference if you know you have someting and you can prove it to anybody. If XMRV turns out to be the cause of CFS and you can't have CFS without XMRV, i'm pretty sure i have it too, so i rather live without being 100% certain for a bit longer than maybe getting a wrong result from a test that's not totally reliable yet. But i understand why people want to take it.
 

Stone

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I'm so happy that you now have a name for this monster. I hope that soon you get to beat it to death or at least into submission. I'm thrilled that now you can walk into a doctor's office with your head up, so to speak.

Blessings,
Stone
 

Sushi

Moderation Resource Albuquerque
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Congatulations Lynn!

Did you test by culture as well, and if so, was that also positive? I am positive by culture and waiting for serology. I sent my sample on Aug 30th, so mine should be coming soon! It will be interesting to see whether people get positives on both serology and culture.

Waiting....
Sushi
 

ixchelkali

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I'm sorry that you don't have something that can be cured by simply "bucking up," but congratulations on getting a definitive answer that will help explain your illness to others, so that they may be able to understand how serious it is. Knowing that you're XMRV positive can strengthen your hope for a treatment in the not-to-distant future.

It's difficult to know what is an appropriate response to this news; I think we need to set Hallmark to work on it.
 

Forebearance

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Congratulations on getting your results back, Lynn. I'm sorry you have XMRV but glad you have an answer now.

Ixchelkali, I'd really like to see the greeting card Hallmark would come up with for this situation!
 
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I'm sorry that you don't have something that can be cured by simply "bucking up," but congratulations on getting a definitive answer that will help explain your illness to others, so that they may be able to understand how serious it is. Knowing that you're XMRV positive can strengthen your hope for a treatment in the not-to-distant future.

It's difficult to know what is an appropriate response to this news; I think we need to set Hallmark to work on it.
Hallmark Card

(front cover) So, it's in the cells?

They thought you were crazy, but you proved them wrong.
I hope the wait for treatments won't be too long.

If you need to jump for joy and you feel proud
Then, tell the world, make it loud.

If you find the shock is a too much of a blow
Then I'll be your friend, whenever you feel low.

Signed, your fellow soldier against ME/CFS.
 

Lynn

Senior Member
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Hallmark - too funny. Thanks for the poem Tina. Maybe when I am feeling better tomorrow I might take a stab at the greeting card as well. Seems like a great fund raising idea.

We could make an ad:

When you don't know what to get for the chronically ill patient that is hopeful they have a retrovirus, we have the right card whether they are positive or negative.

Lynn