On the positive side I am proud and thrilled to say that I am now (after nearly 3 years of treatment) over 85% better.
The fact that I can now actually sit here and type this (in record time!) and form rational thoughts is a true miracle for me!
I have a few "bad Lyme days" a month --- compared to the daily disabling headaches, pain, digestive issues, dizziness, Lyme fog, you-name-it that I started with.
Of course, there has to be a hitch --- starting last year came the fatigue, sore throats, swollen glands, and general feeling that I had been hit by a truck.
Now it seems that I have also been diagnosed with HGRV (I prefer that acronym to XMRV, since at least the word "human" is in this one --- thank you Dr Joe!).
Question ---- is there anyone else out there who also has been diagnosed with this retrovirus?
And, if so ---- is anyone using antiretroviral drugs for it? Or any other therapy?
PM me if you wish!
Thanks, and be well. Mari
Posted by LymeCFIDSMCS (Member # 13573) on :
You might look on Phoenix Rising or other ME/CFS sites -- there are a lot of people with primary ME/CFS who have tested pos. for XMRV/HGRV AND Lyme and co's. And JDJ's website on XMRV (can't post name: doctor -- but if you're not familiar, PM me) addresses treatment with antiretrovirals, though she tends to not agree with long-term antibiotics as much.
Did an LLMD diagnose you with HGRV/XMRV? If so, I am curious who it was if you're willing to PM me.
Posted by Al (Member # 9420) on :
Yes , I tested positive for xmrv and Lyme .Dr. would Not treat because of the problems with the research on xmrv. Current information says most but (NOT ALL) of the research was discredited. I think It will become like lyme , Study after study each one countering the other dragging it out for who knows how long. Your guess is as good as mine as to why, Drug Co's and Careers of researchers ??
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