Positive EBV Antibodies Question

[Tammy]

Depending on what dr/researcher you talk have different interpretations, you will either get an answer that the virus is somewhere where blood PCR testing is ineffective (maybe in the nervous system or the brain tissue?)

Yes.........in the CNS or organs.........even thyroid.

 

[Galixie]

Also, were your EBV antibody titers elevated? Being positive for EBV by antibody titers is not the same as elevated titers; it's the latter that suggests active infection to ME/CFS doctors. If you were just positive but not elevated, that suggests just past infection with EBV.

They were high. The last set that included the numeric values showed this:
VCA IgG 392 (= or > 22 is positive)
VCA IgM 73.6 (= or > 44 is positive)
EA IgG 11.6 (= or > 11 is positive)
NA IgG 43.9 (= or > 22 is positive)

But signs don't point to a real viral infection because there is no virus in my blood and my symptoms revolve around anemia of chronic disease, not EBV.

My immune system seems to be stuck on the idea that there is a virus to fight (triggering the ACD), even though the virus itself has already been defeated.

To be honest, my hope is that the research happening on all autoimmune diseases will lead to both a better understanding of the ACD mechanism, and also a way to selectively alter the body's immune response. I believe those breakthroughs would make a huge difference not just for ME/CFS, but for all of medicine.

 

[Hip]

They were high. The last set that included the numeric values showed this:

I am not an expert, but those titers do not look high to me, except the VCA IgG titer which may be a little high. But your other titers are not much above the threshold for negative. Who was it that interpreted these results, and told you these were high titers?

You would really need to be tested by an ME/CFS doctor who specializes in herpesvirus ME/CFS, as they will be able to interpret your results properly.

 

[Galixie]

I am not an expert, but those titers do not look high to me, except the VCA IgG titer which may be a little high. But your other titers are not much above the threshold for negative. Who told you these were high titers, was it your doctor?

You would really need to be tested by an ME/CFS doctor who specializes in herpesvirus ME/CFS, as they will be able to interpret your results properly.

The virologist thought that my antibody results indicated a virus and even said that one of the antibodies could only remain high for as long as they've been if I were being continually re-exposed to the virus. But with the tests not finding any virus in my blood, he concluded that there was no active virus and that there was no valid treatment.

It was sort of a collective "Huh, that's weird" from both him and the hematologist. The take away seemed to be that my immune system is fighting a phantom virus and nothing can fix it.

Oh, and the hematologist was ready to send me over to the CFS clinic at Harborview, but when he looked for information to give me, he found that it had closed. So there seems to be a lack of CFS specialists in my area.

I think I'd rather find solutions to the problems I already know about than go looking for more problems.

 

[Hip]

I think I'd rather find solutions to the problems I already know about than go looking for more problems.

Perhaps you are a bit like me, and you don't like dealing with the whole tiring mechanics of doctor visits, blood tests etc. In my case, I often just order the drugs online, and try the treatments myself, being my own doctor.

I would not mind going to the doctor if I could see a good ME/CFS specialist, but in the UK there are almost no good ME/CFS doctors, so it becomes all the more tiring to have to explain everything to my primary care doctor who has very little knowledge about ME/CFS treatment.


But you should be aware that the way non-ME/CFS doctors interpret viral blood tests is different to the way ME/CFS doctors interpret them.

ME/CFS patients often have little or no virus in the blood (hence negative PCR blood tests), but their IgG antibody titers are often high. To a regular doctor, this does not make much sense, so like your doctor did, they will scratch their heads, and say "that's weird", and then just ignore it.

But to an ME/CFS specialist, those high IgG titers suggest an ongoing infection may be hidden away in the tissues (rather than the blood), and they will treat with antivirals or immunomodulators.

I am not sure if your elevated VCA IgG is high enough to be considered an active EBV infection, because this interpretation really needs to be done by an ME/CFS specialist who is familiar with this testing.



But certainly you can pursue other theories of ME/CFS and other treatments.