• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

XMRV negatives according to VIP Dx

Hi everyone,
I am new to this forum. So far have recieved a warm connection which came along right at the perfect moment. Thank you thank you. I had been mentally aligning myself with CFS and felt pretty alone with the surprise results.
I spoke with Dr. Lombardi who sounded very impressive telling me about culture/PCR method of detecting XMRV. After a painfully long wait for the results, it came back neg.
I have yet to find a supportive doc that knows about this condition. I have had some that didn't want to know but here is a pill; didn't want to know and you aren't getting any pills and a few that saw dollar signs as I walked into their office with endless pills and tests. Yaaahooo!
This started after an eight week condition that matches in every way with EBV. My doc at the time, who knows that adults cannot get mono, refused to test for it. I have never recovered from that illness in spring 2007. I don't work anymore nor drive. I say a prayer every day for my wonderfully supportive husband who is taking the full weight of our joint responsibilites but he just cannot understand what it is like to be this sick. In the beginning my symptoms were as much fibromyalgia as they were CFS back then.
With the help of my naturopath, the fibro symptoms are rare but the CFS symptoms are far worse and seem to be continually getting worse.
I did have lyme with congnitve impairment and bullseye in 2003 but have tested neg for lyme several times also. Naturopath says he is over his head on this but offered that a very sick lyme pt of his recovered fully with Reishi tea so I am using that right now and a few hormones and diet, hot salt tubs.
I am in NW CT and looking for a doc that is educated in this condition somewhere in NY,CT,MA.
Anyone that would like to add a few words about how they feel when the neg dx arrived or a good doc that is within travel time for me, I would love to hear from you. Ah heck, I would love to hear from you period. Cattrina


Patient in training
Cattrina, welcome to the community- I have tested negative for the culture, but I am waiting for serology since this could test positive. Otherwise I am planning on stopping one drug that likely reduces the viral load to none and then get retested. Some people had to be tested a couple of times. I am also pretty sick and not working and was confirmed with mono in November 2008. Hang in there, you are not alone!