Herpes Vs. XMRV
- Thread starter Tia
- Start date
I think mine is herpes based. I've had neuralgia for 14? years, the pain spreads with activity. I have blood blisters elsewhere 
(and still no treatment on the NHS) but never any evidence of cold sores etc. My husband had shingles when I was first ill (before the neuralgia) and he had Bells Palsy when my hair started falling out, about 8 years ago.
(and still no treatment on the NHS) but never any evidence of cold sores etc. My husband had shingles when I was first ill (before the neuralgia) and he had Bells Palsy when my hair started falling out, about 8 years ago.
I've tested positive for viruses that are members of the Herpes family and also XMRV. This makes sense to me. HIV+ patients also tested positive for Herpes family viri. When Dr Peterson tested some of this patients he found them infected with many more viri than normal. We probably have numerous other infections (bacteria, yeast) just like HIV+ patients before they got treatment.
I have the herpes simplex virus and I would get at least 1 lip blister a year until I got ME/CFS 5 years ago. I have not had a single outbreak since becoming ill with ME/CFS. I also have very high EBV (EA,VCA and NA) and HHV-6.
i wonder if some of us fit into lerners ebv/cmv/hhv6 group and other have all that and xmrv or just xmrv. I dont know if im xmrv, but positive to ebv and cmv and responding to antivirals. I wonder if the herpes infections is a co-infection from an underlying immunodefiency, which could be xmrv. I almost have my lymphocytes down to normal but still have some energy problems and sleep problems, so i wonder if it just takes time to heal or there is damage done from these viruses.
cheers!!!
cheers!!!
Yes I have the herpes simplex as well as EBV and CMV plus XMRV. All good room mates in my body
so am i after the test dummy, lol, oh i am the test dummy im not good a tests but the other part i can do no worries, the dummy part, lol. Whats for morning tea, yum.
My uncle appears fully well after a LONG time on antiherpetic AVs. He seems to be the exception, though, and I'm hearing some things that make me wonder if I'm seeing very small issues that may indicate he's not quite 100%. It seems to me that the vast majority of people who improve on AVs get substantially better -- feel like they have their lives back -- but they're not 100% back to pre-illness condition.
My suspicion is that the herpes virus infections, and there's a whole host of them, are secondary to whatever is causing our immune dysfunction. By that logic, patients will feel a lot better when those infections are treated, but not 100% because we're still not treating the cause of the immune dysfunction.
My daughter now has a superficially normal life after a year on Valcyte, but she's actually only 70% or so. I'm a lot better after a year on Valcyte, but still largely housebound and need daily naps. I'm thrilled with how much better I am with Valcyte, but I won't be surprised if I don't get back to 100%
There may be a few of us who have only active herpesvirus infections, but I bet they're in the minority. Just my guess, though.
My suspicion is that the herpes virus infections, and there's a whole host of them, are secondary to whatever is causing our immune dysfunction. By that logic, patients will feel a lot better when those infections are treated, but not 100% because we're still not treating the cause of the immune dysfunction.
My daughter now has a superficially normal life after a year on Valcyte, but she's actually only 70% or so. I'm a lot better after a year on Valcyte, but still largely housebound and need daily naps. I'm thrilled with how much better I am with Valcyte, but I won't be surprised if I don't get back to 100%
There may be a few of us who have only active herpesvirus infections, but I bet they're in the minority. Just my guess, though.
btw heapsreal, fyi hh6 is very hard to detect in the blood serum, as it mainly lives in tissues, and the brain at that. People get false positives. HH6a is also found in predominately CFS, MS, AIDS, and Cancer patients.
When you say you have EBV, CMV, HH6, do you mean you have the active infection right now?
My blood-work shows hight tithers for these infections but not necessarily the active infection right now.
It also shows positive for one of the Herpes viruses and Parvovirus.
My blood-work shows hight tithers for these infections but not necessarily the active infection right now.
It also shows positive for one of the Herpes viruses and Parvovirus.
Nielk, I've had numerous tests over decades. EBV and CMV have at different times come up as active. The HHV6 I can't remember. Have not had virus tests in the last 5 years. I'm in the UK and need to pay privately to do these and cannot afford to do so.
Ive got quite a few of the herpe family of viruses .. CMV (HHV-5), i get cold sores at times (HHV1 or 2), and had mono (HHV-4) bad. I also carry HPV. For some strange reason i seem to be immune thou to chicken pox (HHV-3) (never had it thou been exposed to it many times).
I havent been tested for HHV6.
I havent been tested for HHV6.