• 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.

Accurate CMV by PCR - How long off Valcyte?

minkeygirl

But I Look So Good.
Messages
4,678
Location
Left Coast
I saw an infectious disease doc today and he has ordered CMV by PCR.

The problem is I've been on 450 mgs Valcyte for 3 weeks. I did not tell him at the appointment but he would be ok with it because he said he will support my taking if I got it elsewhere if the labs don't show any CMV in my blood.

My question is, could 3 weeks of 450 mgs change the levels of CMV in my blod, and if yes how long should I be off to get an accurate test?

I'm probably going to tell him tomorrow, I just want some info first.

Please TAG me so I get an alert.
 
Last edited:

leokitten

Senior Member
Messages
1,595
Location
U.S.
@minkeygirl having significant CMV DNA shedding in peripheral blood in ME/CFS is very rare.

CMV DNA shedding in peripheral blood (DNAemia) usually only occurs during acute infection in a person who is severely immunocompromised (AIDS, or post transplant).

The virus, just like EBV and HHV-6, usually stays in tissues and cells. Only HSV-1 and HSV-2 normally shed DNA in peripheral blood.

Having a highly elevated CMV IgG or and significant positive change in IgG between two time points is pretty indicative of a CMV infection that is active.
 

minkeygirl

But I Look So Good.
Messages
4,678
Location
Left Coast
I have high IgM for CMV. Because this doc is very mainstream this is the test he is using. He is not open to other theories of how to determine active virus. I did discuss the IgG with him.

At the very least he'll support me if I get Valcyte on my own.

And this didn't answer my question. Would being on Valcyte for 3 weeks alter the test just in case some CMV made it to my blood?
 

maryb

iherb code TAK122
Messages
3,602
Location
UK
@minkeygirl having significant CMV DNA shedding in peripheral blood in ME/CFS is very rare.

CMV DNA shedding in peripheral blood (DNAemia) usually only occurs during acute infection in a person who is severely immunocompromised (AIDS, or post transplant).

The virus, just like EBV and HHV-6, usually stays in tissues and cells. Only HSV-1 and HSV-2 normally shed DNA in peripheral blood.

Having a highly elevated CMV IgG or and significant positive change in IgG between two time points is pretty indicative of a CMV infection that is active.


@leokitten
Do you know of any research that I could show my doctor. Every time I ask for a test for viruses I'm told I I need PCR testing.
My IgG have come back raised for CMV,EBV and HSV but she still insists on PCR.
 

leokitten

Senior Member
Messages
1,595
Location
U.S.
I have high IgM for CMV. Because this doc is very mainstream this is the test he is using. He is not open to other theories of how to determine active virus. I did discuss the IgG with him.

At the very least he'll support me if I get Valcyte on my own.

And this didn't answer my question. Would being on Valcyte for 3 weeks alter the test just in case some CMV made it to my blood?

Sorry you didn't mention in your opening post that you have positive IgM. This is definitely indicative of an initial infection with that pathogen or one that occurred recently as IgM lasts a few months. It makes complete sense for a doctor to also do a whole blood PCR after seeing this just to make sure you aren't having an acute infection.
 

leokitten

Senior Member
Messages
1,595
Location
U.S.
@leokitten
Do you know of any research that I could show my doctor. Every time I ask for a test for viruses I'm told I I need PCR testing.
My IgG have come back raised for CMV,EBV and HSV but she still insists on PCR.

Best thing for you if you can is to go to an ME/CFS specialist, especially if you want to start Valcyte + Famvir or Valtrex combo which you should. Most mainstream doctors are too afraid to prescribe Valcyte.
 

maryb

iherb code TAK122
Messages
3,602
Location
UK
@leokitten Sorry I don't understand this,

"It makes complete sense for a doctor to also do a whole blood PCR after seeing this just to make sure you aren't having an acute infection"

Isn't the high IgM result already indicating an acute active infection? Can you explain?
 

leokitten

Senior Member
Messages
1,595
Location
U.S.
@leokitten Sorry I don't understand this,

"It makes complete sense for a doctor to also do a whole blood PCR after seeing this just to make sure you aren't having an acute infection"

Isn't the high IgM result already indicating an acute active infection? Can you explain?

Significant CMV DNA copies in the blood show that the infection is currently acute and the virus is undergoing full lytic replication in enough cells that it would show up in the blood. The number of copies of DNA is a good indicator of how acute the infection is and the viral load. Positive IgM is a bit more vague, it only can tell you that recently or in the last couple months there was active infection, not necessarily that an acute infection is happening now. This is why I believe it makes sense to do this test after seeing a positive IgM.