Discussion in 'XMRV Testing, Treatment and Transmission' started by ABCFS12, May 16, 2011.
IS THERE ANYONE OUT THERE WHO IS XMRV POSITIVE AND NOT DOING ANY TREATMENT?
Yes quite a few are not doing treatments, and you have been explained quite well why on the other thread. Most doctors would say, you dont have this virus, despite your result, they would say your positive result is WRONG, and the test is flawed. Again untill we know more. Not a time to panic. i have been tested positive by both WPI, and The NCI in a UK study. testing positive 3 out of the 4 methods used. almost as conclusive as one could think of. Yet i still dont know if i am. Crazy as it sounds. JM is confident that i am. But i lead a fairly normal life. after having a bad time. early on in the illness ( ME CFS ) so people can go into remission, and partly recover. The muscle fatigue and bone fatigue. Is something i cant seem to recover well from. And its very unpredictable. i can do well for months, then start to get mild symptoms more frequent again. But compared to the past. which was like a living death. i am much better. I am a sign of hope for you, and possibly everyone. well that is, untill something goes wrong again. Which i feel is always just around the corner. But i pray not.
There are hundreds of people who have been tested and found XMRV+. There are maybe 20 people doing ARV's. So most people are not doing specific treatment for XMRV. This is very cutting edge stuff and very risky and expensive. We're still waiting on the science. The WPI is starting clinical trials in the fall.
Can you rephase the question please ABCFS12? Do you mean specific ARV's for XMRV.
Many of us are trying different non-specific things but only as we have been doing for years or decades.
i read that the dr from belgium is finding xmrv in his sickest patients. is this true? as far as i knew when i spoke to vipdx they said they are finding it in healthy controls too
Dr KDM is finding XMRV in his patients with ME and CFS.
VIP dx would be refering to the WPI studies that find a % of XMRV in "healthy" controls. We don't know how many of these controls are going to go on and develop ME or other illnesses that could possibly be related.
KDM is finding it in his sickest patients--yes--but he is also finding it in those who are less sick--including me. He is not finding it in all patients, however--the tests aren't that reliable yet and also some may not be infected.
He is also biopsying stomach tissues of some patients when he thinks it is warranted to look more deeply into severe digestive problems. He has found XMRV there (by PCR) in a number of patients as well as HHV6 and other infections.
For many patients he is giving treatment to enhance natural immune function (GcMAF for instance) as well as dealing with other abnormal test results in appropriate ways. Each patient's protocol is individual
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