How noteworthy is a positive EBV PCR test? And what would you do about it?

[5vforest]

I posted this earlier in a personal thread but I figure that I would move it out here to a new one.

I just got a PCR positive for EBV, which I was totally not expecting. Not that my symptoms don't necessarily match it, just that I was no more acutely sick on that day than any other day.

I don't think these levels are "high", but given the sensitivity/specificity of PCR I'm inclined to believe them and try some more treatment.

I've already taken Valcyte for 3 months with no effect. Not exactly sure what I would try now.

Some folks have suggested more Valcyte -- I am considering it.

I already started Transfer Factor PlasMyc and Reishi capsules. Why not, right?

I have a doctor who would consider trying IVIG to help support my immune system. Apparently they would ideally try it with 50% of their CFS patients if insurance covered it. I think I could get it... but isn't this kinda crazy?

I am open to any advice. This is the only real "lead" I have at the moment; everything else that doctors have suggested to me I feel is either a) too conservative and just treating symptoms, or b) super wacky.

Thanks all

 

[Judee]

I thought Dr Lerner used Valtrex for EBV and Valcyte for HHV6 and CMV.

I think Valtrex is also a lot less expensive than Valcyte though @Learner1 (if I remember correctly) actually had a harder time getting it approved by her insurance.

Hope someone smarter than I am will chime in though.

 

[5vforest]

I already have Valcyte covered, that's not the hard part fortunately

 

[Judee]

I was just thinking that maybe Dr Lerner found something about the Valtrex that worked better for the EBV.

 

[Learner1]

I was just thinking that maybe Dr Lerner found something about the Valtrex that worked better for the EBV.

I believe Valtrex is used if someone only has EBV, not other herpes viruses, like CMV, or Famvir. HHV6 or 7, Zoster, etc. If they have multiple viruses, Valcyte is more effective.

I was just thinking that maybe Dr Lerner found something about the Valtrex that worked better for the EBV.

I believe Dr. Lerner is deceased and it might just be possible that other doctors have been making discoveries about works in the past 10? 12? 15? years since Dr Lerner last practiced....

 

[5vforest]

Gonna shamelessly bump this post ..

 

[Pyrrhus]

I like to refer to herpesviruses as "Me too!" viruses, as they tend to re-activate whenever they sense that inflammation is occurring in the body.

These re-activations can be treated with anti-herpes medication, and sometimes that produces an increase in quality of life, but until the underlying inflammation is resolved, there is always the possibility of another re-activation.

There is a particular problem if the underlying inflammation is caused by a different viral infection. Although most viruses are too small to be seen under the microscope, herpesviruses are large enough to be seen under the microscope. So, if a patient has symptoms of a viral infection and a pathologist examines their blood under the microscope, all they might see is a herpesvirus. Then, they might erroneously conclude that the cause of the viral symptoms is a herpesvirus such as EBV.

Hope this helps.