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What does this mean? (EBV TESTS)

Messages
24
Hi, I was diagnosed with Epstein-Barr Virus like 2 years ago, as symptoms continued I decided to repeat the tests, I am not doctor so I'm looking for advice on what this means:

2 Years ago:
Epstein Barr Virus (VCA) IgG U/ml = 139.0
Epstein Barr Virus (VCA) IGM U/ml = <10

Now:
Epstein Barr Virus (VCA) IgG U/ml = 188.0
Epstein Barr Virus (VCA) IGM U/ml = <10

So all this means is I'm still sick, right?

If so, am I contagious?
 

Ema

Senior Member
Messages
4,729
Location
Midwest USA
Hi, I was diagnosed with Epstein-Barr Virus like 2 years ago, as symptoms continued I decided to repeat the tests, I am not doctor so I'm looking for advice on what this means:

2 Years ago:
Epstein Barr Virus (VCA) IgG U/ml = 139.0
Epstein Barr Virus (VCA) IGM U/ml = <10

Now:
Epstein Barr Virus (VCA) IgG U/ml = 188.0
Epstein Barr Virus (VCA) IGM U/ml = <10

So all this means is I'm still sick, right?

If so, am I contagious?
To differentiate a chronic infection from a past infection, you need to test Early Antigen IgG. It's not possible to say whether those results represent a past infection or a reactivation without that test.

See the table here for additional details.
 
Messages
24
To differentiate a chronic infection from a past infection, you need to test Early Antigen IgG. It's not possible to say whether those results represent a past infection or a reactivation without that test.

See the table here for additional details.
Thanks
 

Hip

Senior Member
Messages
17,824
To differentiate a chronic infection from a past infection, you need to test Early Antigen IgG.

I think (but am not sure) for ME/CFS purposes, either an elevated EBV early antigen (EA) and/or an elevated EBV virus capsid antigen (VCA) can indicate an active EBV infection.

I have to consult my own roadmap of chronic fatigue syndrome treatment, because my memory is too poor to remember these things, but in the roadmap its says:
Epstein-Barr virus antibodies. Dr A Martin Lerner says ME/CFS patients have an active EBV infection when there are elevated ELISA antibodies in the EBV IgM VCA test and/or the EBV EA diffuse test. Ref: 1 2

Professor Jose Montoya says a Quest EBV IgG VCA test result of 1:640 or higher and/or a Quest EBV IgG EA test result of 1:160 or higher is indicative of an active EBV infection. Ref: 1

Note that:
EA = early antigen
VCA = virus capsid antigen (also denoted by CA)
EBNA = Epstein-Barr nuclear antigen


In Dr Lerner's paper he says:
CFS patients were considered to have active EBV infection if there were elevated enzyme-linked immunosorbent assay (ELISA) serum antibodies to EBV IgM viral capsid recombinant peptide antigen VCA p18 (Diasorin, Stillwater, MN) and/or EBV early antigen EA-D, a 47 kDa recombinant polypeptide
That's where I got the info to put in the roadmap.



@cfs_ebv_hiphop, does it say on your lab report whether your results are indicative of an "active infection", "past infection", or words like that?

If you do have an active EBV infection, you might want to check out Dr Lerner's antiviral protocol for EBV.
 
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Messages
24
I think (but am not sure) for ME/CFS purposes, either an elevated EBV early antigen (EA) and/or an elevated EBV virus capsid antigen (VCA) can indicate an active EBV infection.

I have to consult my own roadmap document, because my memory is too poor to remember these things, but in the roadmap its says:



In Dr Lerner's paper he says:

That's where I got the info to put in the roadmap.



@cfs_ebv_hiphop, does it say on your lab report whether your results are indicative of an "active infection", "past infection", or words like that?

If you do have an active EBV infection, you might want to check out Dr Lerner's antiviral protocol for EBV.
Interesting, do you have a link where I could find that protocol?
 

Hip

Senior Member
Messages
17,824
Interesting, do you have a link where I could find that protocol?

From the roadmap of chronic fatigue syndrome treatment:
Epstein-Barr virus infection. If your tests indicate you have an active infection with EBV, this may be causing or contributing to your ME/CFS symptoms. Dr A. Martin Lerner has shown that the antiviral drug valacyclovir (Valtrex) at a dose of 1,000 mg four times daily often improves ME/CFS symptoms, though usually the benefits only begin to become noticeable after around 3.5 months of treatment.1 The full improvements from this drug appear after 2 years of treatment.1 Valacyclovir can cause decreased kidney function or kidney failure, so it is advisable to test kidney function while on this drug. Those who experience side effects from valacyclovir can substitute with famciclovir (Famvir) at the same dosage; Famvir is usually much better tolerated.

In Dr Lerner's study on 142 ME/CFS patients with herpes virus infections, 75% of patients responded to the appropriate antiviral treatment (Valtrex/Famvir for EBV, and/or Valcyte for HHV-6 and cytomegalovirus); the average improvement in ME/CFS symptoms was a 2-point increase on the Energy Index Point Score scale (for example, as a result of antiviral treatment, an average patient may go from level 4 to level 6 on this scale).1

Professor Jose Montoya has found valganciclovir (Valcyte) effective when there is an active EBV infection. This drug needs to be taken for 6 month in order to see improvements.1 Valcyte can have serious side effects and thus patients taking it must be medically monitored.

More info on Lerner and Montoya's antiviral treatment for ME/CFS given in this post. Dr Lerner posits that the herpesvirus infections found in ME/CFS patients are not regular infections, but chronic abortive infections.
 
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Gingergrrl

Senior Member
Messages
16,171
@Ema or @Hip How would the "EBV PCR Quant (Whole Blood)" fit in with all of this? Mine is currently positive at 110 and it says, "The quantitative range of this assay is 100 to 1 million copies/mL". Both of my doctors said it is positive, and I am not doubting this, but am trying to understand what 110 means since there is no real range or titer? I will be re-running it at the end of Dec to see if the number has increased or decreased. Thanks in advance!
 

Ema

Senior Member
Messages
4,729
Location
Midwest USA
I think (but am not sure) for ME/CFS purposes, either an elevated EBV early antigen (EA) and/or an elevated EBV virus capsid antigen (VCA) can indicate an active EBV infection.

I have to consult my own roadmap document, because my memory is too poor to remember these things, but in the roadmap its says:



In Dr Lerner's paper he says:

That's where I got the info to put in the roadmap.



@cfs_ebv_hiphop, does it say on your lab report whether your results are indicative of an "active infection", "past infection", or words like that?

If you do have an active EBV infection, you might want to check out Dr Lerner's antiviral protocol for EBV.

A positive IgM VCA, not IgG, is indicative of an active infection. But the OP's IgM is neg.

"A diagnosis of Epstein-Barr virus(EBV) infection is made with a positive EBV EA antibody diffuse and/or a positive VCA IgM antibody."

http://www.treatmentcenterforcfs.com/documents/MECFSTreatmentResourceGuideforPractitioners.pdf

My experience with Lerner is that he typically measured the IgG titer after the initial round of testing.
 

Ema

Senior Member
Messages
4,729
Location
Midwest USA
@Ema or @Hip How would the "EBV PCR Quant (Whole Blood)" fit in with all of this? Mine is currently positive at 110 and it says, "The quantitative range of this assay is 100 to 1 million copies/mL". Both of my doctors said it is positive, and I am not doubting this, but am trying to understand what 110 means since there is no real range or titer? I will be re-running it at the end of Dec to see if the number has increased or decreased. Thanks in advance!

A PCR test measures copies of viral, in this case EBV, DNA in your blood per mL. So your result means that viral DNA was found in your blood. Typically this is not where the virus likes to hang out, so it is not a foolproof way to test either, unfortunately.

Obviously defer to your own doctor, but my understanding is that results under 5,000 copies/mL are of limited diagnostic value and may not be reproducible...at least according to Mayo's lab. ARUP doesn't report under 390 copies/mL either.

Sadly, all of this testing is subject to interpretation and fraught with problems. This article goes even further to say that there is no correlation between serological parameters and viral load.
 

Gingergrrl

Senior Member
Messages
16,171
A PCR test measures copies of viral, in this case EBV, DNA in your blood per mL. So your result means that viral DNA was found in your blood. Typically this is not where the virus likes to hang out, so it is not a foolproof way to test either, unfortunately.

So the PCR test strictly means that there are viral copies of EBV in the blood but (if I understand you correctly?), the virus does not generally hang out in the blood? Does it normally stay inside of the cells? What would be the most foolproof test for EBV (or are basically none of them reliable)?

Obviously defer to your own doctor, but my understanding is that results under 5,000 copies/mL are of limited diagnostic value and may not be reproducible...at least according to Mayo's lab. ARUP doesn't report under 390 copies/mL either.

I'll be doing a phone consult with him next week and have all of my lab results but have not discussed them w/him in detail. I bookmarked this post and all three of your links so I can review them before I talk to him. I definitely prefer not to go back onto an anti-viral but will if it's absolutely necessary.

Sadly, all of this testing is subject to interpretation and fraught with problems. This article goes even further to say that there is no correlation between serological parameters and viral load.

So even if the PCR/blood level was very high, it would not correlate with someone's viral load? I am not sure what that means unless it is referring to symptoms? I have zero viral symptoms (no fever, no sore throat, no swollen lymph nodes, no sick or malaise feeling, etc). My worst symptoms remain POTS/autonomic dysfunction. But I am also doing high dose IVIG which is protective against these viruses and my numbers might be higher without it. I really am not sure?!
 

Wonkmonk

Senior Member
Messages
1,006
Location
Germany
If so, am I contagious?

I think no one has commented so far on this question: I would say you are not, because IgM is negative, but even if you were, 98% of the population is infected with EBV by age 40 and once infected, they also have immunity (unless they are immunocompromised and in that case their "own" EBV reactivates), so the risk of infecting others is probably not a big problem. The exception would be if you have contact with a seronegative, immunocompromised individual, e.g. a pregnant woman. Then she might contract first infection of EBV and in an immunocompromised state, EBV can cause complications. But for immunocompetent people, even if they are not infected, it doesn't cause big problems and at some point in their lives, they will almost certainly get infected anyway.

That's at least my understanding, hope others will comment, too. And it is always important to check everything on this forum with a physician.
 

Gingergrrl

Senior Member
Messages
16,171
I think no one has commented so far on this question: I would say you are not, because IgM is negative, but even if you were, 98% of the population is infected with EBV by age 40

I was the one freak of nature who some how managed to not be exposed to EBV until I got severe mono at age 41 following a minor surgery. I had been tested in the past (due to chronic tonsillitis and other issues) and was IgM and IgG negative until getting Mono at 41 when I became IgM positive. Then for 3-4 years I stayed IgM, EA, and IgG positive.

so the risk of infecting others is probably not a big problem

During the time that I had severe mono, not a single family member or friend caught it from me including my (then) fiance nor my mother, both who had never had it to the best of their knowledge. Although I did everything humanly possible to isolate myself so no one was exposed.
 

Ema

Senior Member
Messages
4,729
Location
Midwest USA
But if I'm not mistaken, Dr Lerner also treats high IgG titers as evidence for active infection, at least for CMV and HHV6, but possibly also for EBV (I don't remember that exactly).
Yes, I would say that is true...Lerner definitely diagnosed me with CMV and HHV6 based on high IgG titers (and negative IgM).

However, I think that was an inference (that may not have been correct, or maybe reflected his hypothesis of an abortive infection) that the current viral testing really isn't able to support. If he had had time to really prove his theories, we might know more now about what these tests really reflect, but sadly his work was cut short by his passing.

In terms of EBV, there is better testing available to detect a reactivated infection, namely positives to the early antigen IgG. Without that, I'm, at least, unwilling to speculate about reactivation vs past infection.
 

Ema

Senior Member
Messages
4,729
Location
Midwest USA
So the PCR test strictly means that there are viral copies of EBV in the blood but (if I understand you correctly?), the virus does not generally hang out in the blood? Does it normally stay inside of the cells? What would be the most foolproof test for EBV (or are basically none of them reliable)?

I am totally confused about it all now myself after doing more reading!

But yes, the PCR test means that there are copies of viral DNA in the blood. The normal result for this test is negative for viral copies in the blood, and yes, the virus prefers tissues to blood, though will certainly be present in the blood during asymptomatic viral shedding or an active infection. Viral shedding can happen in anyone who has ever had the infection.

However, Quest says that there is a difference in PCR results depending on whether or not the sample was taken from plasma or whole blood.

Question 1. Why did I get a different viral load result in whole blood than in plasma?
These viruses, as well as some others we test for, establish latency within cells found in whole blood. However, these cells are not found in the plasma. PCR can detect latent virus; thus, we can detect latent and active virus (lytic phase) in whole blood but only active virus in plasma.

So that seems like it would be a relevant distinction...but I'm not sure how it could be clinically useful. It doesn't seem at all wise to treat a latent infection without symptoms unless you are an organ transplant patient with HIV or something.

So even if the PCR/blood level was very high, it would not correlate with someone's viral load?

It seems like that is what they are saying in that article, but I'm sure that is a point of contention among practitioners.

Let me know how it goes! I'm curious for sure.
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
I'm seeing a top ME/CFS specialist who diagnosed me with chronic EBV with a high VCA IgG and a positive PCR. He said I definitely had it, even though all other types of EBV tests were negative over the previous 18 months.

From what I understand, EBV doesn't behave the same way in everyone and has some oddities in its replication making it hard to find, especially in those of us whose immune systems aren't working well.

The doctor put me on 1.8g of valganiciclovir and my brain fog began to clear and energy improved. I'm still dealing with the autoimmunity the EBV seems to have caused.
 

Gingergrrl

Senior Member
Messages
16,171
@Ema would you say that the Early Antigen test is a better predictor of active EBV (that needs to be treated with an anti viral) than a positive PCR test? I'll def let you know what happens after my phone consult next week and am getting so confused re: this issue now!
 

Ema

Senior Member
Messages
4,729
Location
Midwest USA
I would say that they are both pieces of a puzzle that have to be interpreted by a professional taking symptoms and the whole picture into account. In your case, taking rituximab, as well.

I’m also curious what your IgG titers would look like after rituximab. If you have no B cells, does that mean no antibody response?
 

Gingergrrl

Senior Member
Messages
16,171
@Ema I believe I would still make antibodies b/c I asked my doctor (pre-Ritux) if I needed to be revaccinated for anything post-Ritux and he said absolutely 100% no. He said the vaccines are in the memory cells (this is from memory and not his words) and they are untouched by Ritux so I assume the antibody response would be similar?