I never thought I would see the day when I, a chronic fatigue syndrome patient, would be happy to be grouped back in with the CFS community. I was so pleased to get a Lyme diagnosis eight years after crashing with rapid onset, flu-like symptoms, brain fog, post exertional fatigue, aka CHRONIC FATIGUE SYNDROME.
Currently I am eagerly awaiting getting a PCR and culture test for XMRV and fervently hoping I test positive. Do I have borrelia? Yes. Do I have mycoplasma? Yes. Do I have c. pneumonia? Yes. Do I have babesia? Yes. Do I care with whom I am grouped? No, as long as they can find the basic cause and treat it. IF we find XMRV in Lyme patients that may begin to explain why some of us seem to never recover and always relapse while others with Lyme get well.
Here’s the thing. If XMRV acts like the other big retrovirus on the table, HIV, it will suppress your immune system so that you will not be able to recover from borrelia, babesia, bartonella etc.
A few months ago I was up at Reno for the IACFS conference. They wanted to sort out and move out the patients with a Lyme diagnosis. I have protested this for five years. I don’t think that is the solution. We have to have valid tests for the various infections including XMRV and find out what we really have. Then we can be grouped and accurately treated in some meaningful way.
I will post more when I get my lab results for XMRV.