Follow Up to Confusing EBV Test Results

Other posts have mentioned the confusion I have with EBV test results on interpretation charts. Although I have had high markers for EBV-IgG, EBV-IgM, EBVNA, the EBV DNA tests I have had by PCR all show no active EBV, according to three different doctors. But the antibodies have been high for years.

dcd, who posts a lot on this site, has questioned how a positive IgM could still mean negative. I agree. That is what is confusing. Below is a link, which I have trouble making active, to a test result interpretation chart provided by the Mayo Clinic. It is also found on several other sites.

If you take a look at the chart, you will see what I mean. Then add in what doctors have said. But trying to understand what EBV DNA results indicate are also confusing. I feel as bad as I did last year and about two years ago. Again, deep fatigue, but no swollen lymph nodes, no fever or other indicators of EBV. Yet, with the positive antibody tests, especially the IgM, it throws me. If you are dealing with potential EBV, it might help understand what you are dealing with. Or not.

The link is below. Sorry you'll have to cut and paste. And if you understand it better than I, would love to hear your nhoughts.

https://www.mayocliniclabs.com/test-catalog/Clinical+and+Interpretive/84421

i find the mayo clinic site in general a kind of middle of the road source -

its not quite at the bleeding edge of what is known - but its not at the other end of die hard medical conservatism either - somewhere in the middle - which i think makes it an OK source for basic info.

reading the article on the mayo clinic site linked - it seems to me that the overall message is that the test is not very reliable, and that there are a lot of provisos and assumptions built in.

to me it seems that there is an assumption, built into the interpretation chart that antibodies will form 6-8weeks after initial infection, but then the article also wans that this may not happen in 5-10% of cases - so already we can see clues to sensitivity below 90%

it also says that the approach has not been validated in people with immunosuppression - which is everybody with chronic infections - so again i would interpret that to mean we should expect sensitivity issues or accuracy problems with interpretation in Lyme patients.

unfortunately i would take this to mean the diagnostic value of EBV serology-based tests in lyme to be rather limited.
however, i would also take the positive IgM as indication that there is at least an elevated likely hood of some kind of EBV related issue going on - and that would bear further scrutiny.

if it were me i think i would pursue it with :

1, further forms of testing - ideally by different labs and technologies than already used
eg lymphocyte neutralisation tests or similar if they exist for EBV, or alternate PCR labs, any other methods with some proven science behind them.
i don't know which lab you used for PCR testing - but my impression is many labs offer this tests using PCR technology now - but through my own experiences i have found compelling evidence that they do not necessarily do what they say on the tin - and it is therefore wise to treat results with caution.

we should remember they are businesses first and foremost, and few are regulated in any meaningful way, so as consumers we have very few tools to evaluate how accurate they are - their target customers often have few other options and will therefore pay for their product/service whether is is proven of not.

sometimes all we can do is do 3 tests via different labs/ methods and try to reason logically though the results.


2, therapeutic trials of anti-virals known to be effective for EBV

-pharma antivirals ( not sure which are specific for EBV - but would look into it carefully - incl adverse reactions, interactions, counter indications etc before making up my mind if this is the option for me )

-monoluarin (many LLMD's suggest it is effective for viruses including EBV)

- Buhner herbs for EBV ( he has a book on herbal treatments for viruses - none of the herbs in it are particularly harsh or dangerous - so probably low risk, low cost option )

good luck

Thanks for link, Girlie.

Garzie - points well taken. A lot of what you mention are what makes me unsure of what the results all mean. And I still don’t understand if a negative EBV DNA means the EBV is not active or just not replicating. I’m going to ask a doctor if there is a difference. I do know when they see the results EBV is dismissed by them.

There have been several labs - Labcorp, R.E.D in Belgium and one more, that did the EBV DNA (PCR) testing. R.E.D. Is the one Dr. Jernigan uses and is, supposedly, cutting edge.

dcd- I watched the video you linked. Very interesting. She also mentions with infections she doesn’t think you should supplement with iron for anemia because it can set off autoimmune. Think I heard that. And my numbers on where she thinks Lymph’s, monos and neutrophils should be were right there as normal to her. EBV IgG in 200s. But that was two months ago. Her angle in dealing with it all by using naturals is also interesting.

running wild said...
Thanks for link, Girlie.

Garzie - points well taken. A lot of what you mention are what makes me unsure of what the results all mean. And I still don’t understand if a negative EBV DNA means the EBV is not active or just not replicating. I’m going to ask a doctor if there is a difference. I do know when they see the results EBV is dismissed by them.

There have been several labs - Labcorp, R.E.D in Belgium and one more, that did the EBV DNA (PCR) testing. R.E.D. Is the one Dr. Jernigan uses and is, supposedly, cutting edge.

.

i think all PCR tests will simply look for bits of viral DNA ( they are not sophisticated enough to determine what its doing ) - if they find lots - the interpretation will be that the virus is replicating - as in - making lots of copies of itself and thereby the virus is "active", viral load is high and not held in check by the immune system.

however, these are all relative concepts as, in reality, in any of us that have ever had it, it is usually still there in the background ( same for many viruses we have had - and particularly the herpes virus family of which this is a member).
but although its there in small numbers and these are probably replicating - its also getting mopped up by our immune system at about the same rate it is formed and so the viral load is minimal and not growing and therefore homeostasis is maintained and illness is not present. this is the normal state for humans.

in practice in all of these tests, they will have to set a threshold below which they feel the virus is unlikely to be causing a problem for the host.

tests sensitivity or usefulness come about from how wide the gap is (or how much overlap there is) between a result with which the host certainly has an issue, and a result with which the host is certain to have no issues. in many test technologies there is quite a bit of overlap.

i am afraid i don't know much about the specifics of this for viral PCR testing or PCR testing for EBV. Perhaps there are mechanisms where it can be in play and causing issues but just not show up in blood tests - eg like bart or lyme.

if you feel you have exhausted the testing routes you could opt for a therapeutic trial of anti-virals.
I think that's what I would do.

Just got back from the infectious disease doctor - one who would actually answer questions directly and listened.

First, I showed him my positive results for years with EBV IgM, IgG and EBNA and asked how the IgM could remain high on someone for years. He said it really does happen, and the fact it's been that way for so long with three negative EBV DNA tests tells him a story.

I then asked "Are you saying you feel confident that there is no EBV at play here because I do not feel good and am very tired all the time?" He said yes, but agreed to do another EBV DNA test to validate.

The overlapping symptoms of EBV and Lyme is just adds another question to the mix. While I could se he wasn't interested in talking about chronic Lyme, at least he may have knocked out EBV. If negative, the test would validate his thoughts. I'm trying to eliminate again, rather than get a diagnosis for something.