posted
In addition to having lyme, I wonder if I might also have XMRV, the retro virus now suspected to cause chronic fatigue syndrome. Does anyone have any personal experience with this--being tested or getting treatment? I aleady have the info on the testing lab.
Posts: 702 | From North Eastern USA | Registered: Dec 2009
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posted
I would wait. They are having problems with the test. Lots of negative results and there is no treatment anyway.
Posts: 770 | From USA | Registered: Jul 2006
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merrygirl
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posted
I am awaiting the test kit and will be getting tested when it gets here.
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springshowers
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posted
I should know tomorrow after giving my blood last week...
Myco.. what are the problems with lots of negatives/
Can you expand on that?
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sutherngrl
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posted
I think I will wait until they learn a little more about this virus and maybe improve on the testing.
I see why you would want to get tested though. If it gives you answers as to why you are ill, then that is at the very least some validation.
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gwb
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posted
To those of you who are having the test done, since there isn't any treatment what is the purpose of having the tests? Is it just to satisfy your curiosity?
If that's why you're doing it I certainly understand as I'm very curious to know if I have it too. But after reading that there's no treatment for it (that I'm aware of) I kind of felt there's no use in knowing.
posted
Testing is not perfected yet according to those who have been tested. Many problems with the early tests so far and no treatment in the immediate future.
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springshowers
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posted
It was my doctor who put it on his list of work ups this last visit. I was good with that. Doing a bunch of other tests just to see where I am at and that one was added. I did not go looking to get it done. I did ask what the treatment would be. And there is no answer to that yet .. TBD>.. I was gives some examples of HIV drugs but not sure if it would actually be used....??
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gwb
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posted
springshowers, sounds like you've got a good doctor. Glad he's willing to do all these tests for you. Wish I could find a doctor who'd do tests for me without me begging them to do it.
Keep us posted on the test results and what treatments you end up getting.
gwb
Frequent Contributor (1K+ posts)
Member # 7273
posted
To those of you who are having the test done, since there isn't any treatment what is the purpose of having the tests? Is it just to satisfy your curiosity?
If that's why you're doing it I certainly understand as I'm very curious to know if I have it too. But after reading that there's no treatment for it (that I'm aware of) I kind of felt there's no use in knowing.
posted
I haven't been tested yet. But my pain doctor put me on Amantadine, an antiviral. Anyone else taking that???
-------------------- DOCTOR: "I don't think you are sick." PATIENT: "We are all entitled to our opinions. I don't think you are a doctor." Posts: 697 | From Northern California | Registered: Jul 2009
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merrygirl
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posted
for me it would be more validation that i am sick i guess. I think my doctor would "try" something. I am wiling to be a guinea pig of sorts. I think we are all guinea pigs to some extent.
So time will tell.
melissa
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springshowers
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posted
We all would love to know what might be the culprits that might be making us feel bad and just maybe there will be something that can be given for it. ..
Like Merry said.. there are many doctors willing to try this or that and many of us willing to be tried on...
I am one too.
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
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posted
I thought I read that anti-retrovirals were given for XMRV. I guess at least a positive result would make getting into a research study possible.
Posts: 702 | From North Eastern USA | Registered: Dec 2009
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posted
I think the Amantadine anti viral medication is helping a little bit. I take it twice a day. My doctor said she thought it would give me some energy. But I'm afraid the Bicillin is stealing that away!
-------------------- DOCTOR: "I don't think you are sick." PATIENT: "We are all entitled to our opinions. I don't think you are a doctor." Posts: 697 | From Northern California | Registered: Jul 2009
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posted
Springshowers was it VIP lab?? I had this done yesterday. Rifing for Retroviruses has made me so sick. Hopefully this is the key.
Posts: 67 | From cape cod | Registered: Aug 2006
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posted
I'm on a waiting list at VIP labs. I want to know what I'm all dealing with.
-------------------- You never know how strong you are until being strong is the only choice you have. Posts: 807 | From South Dakota | Registered: Jul 2005
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karenl
Frequent Contributor (1K+ posts)
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posted
My test came back negative ( Fry Labs).
Posts: 1834 | From US | Registered: Oct 2008
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posted
Wow I didn't know Fry labs tested for XMRV. I wouldn't get mine any where but VIP labs.
-------------------- You never know how strong you are until being strong is the only choice you have. Posts: 807 | From South Dakota | Registered: Jul 2005
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