XMRV results

Cort

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Thanks Patient 2! I would much rather be positive because I think if XMRV works out the government will throw alot of money at it and hence increase the possibility of a good treatment. (on the other hand the virus is apparently of a type that may limit treatment possibilities; ie we may not see a raft of treatments aka AID's. )
 
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George

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Thank You

Thank you Patient 2 for sharing all of this info with us. It's really nice of you. I don't mean to invade privacy it's just that I (probably all of us) are hungry for information.

I do hope that you are dealing with this information o.k. and if you have trouble in any way you know you can post your feelings here and get a bunch of good listener/readers (grins)
 
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George

Thank you Patient 2 for sharing all of this info with us. It's really nice of you. I don't mean to invade privacy it's just that I (probably all of us) are hungry for information.

I do hope that you are dealing with this information o.k. and if you have trouble in any way you know you can post your feelings here and get a bunch of good listener/readers (grins)
Thanks so much for your support! I know people are very supportive on this forums and I am very thankful for that! :)
 
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Levi

I read your background and noted the possible radiation exposure from Chernobyl. As a child, I had a large radiation exposure related to nuclear bomb testing. I have always been suspicious that it may be related to my particular case. I hope you find improvement in the future.
Yes, that is definitely a sore spot in my history. I also hope that Mike's doc will cure me or at least get me functional again. Sorry you had to experience that as well...
 

Cort

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Oh yes, Mike's doc thought Patient 2 was his most difficult case of the three patients being treated but interestingly he thought she had a bit different profile as I remember from other ME/CFS patients. She is however quite ill and quite disabled.

I guess we would have to devise a separate poll to get linkage.
 

flybro

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Radiation?

From birth 1965 up until I was 4 or 5, I was given so many x-rays, including barium meal x-rays. My mother was advised by military Dr's in Aldershot UK, that my radiation exposure was to high to carry on with more x-rays.

Whats the chances of this being relevant.
 

Kati

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I would also prefer to be positive for XMRV- that would certainly shut my dr up and she'd stop push the anti-depressant prescriptions at me.

I would also think the access to a retrovirologist would be easier than a CFS dr- since there is none around here. However we'd need to convince the HIV dr they are indeed retro-virologists... That might be another battle
 
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Very interesting, thanks for posting.

On one hand, I would rather not be infected with a retrovirus. On the other, getting a positive XMRV result would go a long way to explaining my illness. But it's not up to me. I either have the virus or I don't. The best thing I can hope for is that the test is accurate.

Personally I have decided to wait until at least antibody testing is available, and I would also like to wait until quantitative results are given (e.g. viral load or antibody titer).
 
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I'll have to wait for testing to head back through time to the dark ages (UK).

Can someone point me to an 'Idiot's guide' to classic ME symptoms please? Or the best thread to ask in, rather than going off topic here. So many questions.....
 

froufox

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Thanks for sharing your result Patient 2 and glad to hear you are happy with your result! At least that is one less thing to worry about and you can just get on with addressing the problems you do have.

I hope I test negative too but just intuitively I have a feeling that I will test positive, but what will be will be...
 

Daisymay

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Natural anti-retrovirals

I have had very good results with this doc and he is prepared to treat it with natural anti-retrovirals, so I am going for it. Don't see that there is anything to lose, and it will be quite a while before other options are available.

Sushi
Interesting Sushi, I'd be very interested to hear what natural anti-retroviral treatments your Doc suggests, if you feel up to posting.
 

Michael Dessin

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Thanks for posting your results

My one concern is that you have already been through three months of treatment, would the virus still show up?

I personally thought you would not have it, even at the start of treatment, but patient 1 and 3 very likely. The interesting thing, is your a tougher case than them.

I know after 3 months of treatment, many of the virus I had chronically for years were no longer able to detect. Even past antibodies is a concern for me, in not showing up.

I think this applies to many patients who are doing treatments, especially immune modulators and antivirals.

So there may be a chance the results can be skewed. I hope these labs ask if the patients are on current treatments.

Even HIV patients can get down to levels where they can't detect the virus.

Mike
 

Sushi

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Interesting Sushi, I'd be very interested to hear what natural anti-retroviral treatments your Doc suggests, if you feel up to posting.
Sure, but the way this doc works, it is individualized according to all the other things going on in the body. But he has had good results treating HIV "naturally." I am his first XMRV.

He tested me with the vial of XMRV against a host of remedies. The one that tested strongest--for me--was the Monastery of Herbs formula # 67. But again, each person would likely respond differently. The is a combo of a zillion herbs and nutrients, small doses, two bottles of liquid and one of capsules, taken with a lot of "energetic" precautions--fasting, no electromagnetics, no metal on the body, fast for 6 hours after, etc.

We'll see. I took the first dose last night and I am still here and typing! This, at least is good--it didn't do me in. We'll see.

Sushi
 
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Mike

My one concern is that you have already been through three months of treatment, would the virus still show up?

I personally thought you would not have it, even at the start of treatment, but patient 1 and 3 very likely. The interesting thing, is your a tougher case than them.

I know after 3 months of treatment, many of the virus I had chronically for years were no longer able to detect. Even past antibodies is a concern for me, in not showing up.

I think this applies to many patients who are doing treatments, especially immune modulators and antivirals.

So there may be a chance the results can be skewed. I hope these labs ask if the patients are on current treatments.

Even HIV patients can get down to levels where they can't detect the virus.

Mike
I did the test 2 months into my treatment. I just don't think treatment is that powerful to deal with retrovirus in such a short time. But yes, maybe my main problem is toxicity and EBV, which is plenty! I am looking forward to seeing what Patient 1 and 3 get as their results.
 
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cmam

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I have the same situation. They tested the blood sample on 11/6 and i just called the dr. and they have the test results. He was with a patient, so I'm hoping to hear back today. Even though I have an appt tomorrow, I actually want to get my results over the phone. I just want to know. I don't know if I'd be happy about it, but it sure would be validating after years of various people not believing that I'm sick. At least I'd have something concrete to battle.
 

Michael Dessin

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Yes

Patient 2
well, from my experience these virus can be controlled in as liitle as 8 weeks.

Regardless, I'm happy for you and I just want to see you well. :D

M
 
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cmam

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After, just saying I was sort of hoping for positive, my doctor just now e-mailed the results: Negative. Hmm...

I would say I'm functioning at about 70%. I work full-time, but get very tired. It is a pretty stressful job (mostly due to the egomaniacs I work with:) It is hard to be so tired as I have a 9 year old who needs a lot emotionally when I get home.

I guess now I'll proceed with the Methylation block and other alternative treatments to improve the various areas that don't function too well.

Are there directions on how I can post results?
 
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cmam

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Figured out how to post the test results....that was easy!

Forgot to mention that I had both tests done. Were the culture and the PCR the same ones they did in the Science study? Didn't that detect 67% and then they did other tests to come up with the greater than 90% results? I wonder what the difference was between the two groups?
 
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Mike

Patient 2
well, from my experience these virus can be controlled in as liitle as 8 weeks.

Regardless, I'm happy for you and I just want to see you well. :D

M
I asked doc how my viruses are doing and he still said it's an issue for me. So, i guess it goes along with me being a difficult case! Thus, I am leaning more towards not having XMRV to begin with.