Do you have an active EBV infection? (POLL)

[sometexan84]

Hopefully this is pretty self-explanatory. Very intrigued to see the responses.

But remember there's a difference between the following (4) elements (they all mean different things):

EBV VCA IgM
EBV Early Antigen (EA) IgG
EBV VCA IgG
EBV Nuclear Antigen IgG

High Titers = Positive = High = Abnormal
Normal Titers = Negative = Normal

>>>> Please see my post below regarding the relevance of this Poll (and more info on EBV & ME/CFS)

 

[Judee]

I didn't vote because I haven't been tested recently but when I was tested it did not show as active. However, I have IgM deficiency so the doctor did not know if that would affect the test results since IgM is the one that shows active infections.

 

[sometexan84]

I didn't vote because I haven't been tested recently but when I was tested it did not show as active. However, I have IgM deficiency so the doctor did not know if that would affect the test results since IgM is the one that shows active infections.

That's ok, just use your last EBV test results to make the vote!

 

[keepswimming]

My last test results detected igG and igM, I don't think there's a option for that? The last test I had done was 7 months ago, and 12 months after contracting EBV (which triggered my CFS). However because my PCR came back normal I was told I didn't have an active infection, that it was just a throwback to the infection 12 months previously... I would be interested to know what the results would be now.

 

[sometexan84]

My last test results detected igG and igM, I don't think there's a option for that?

No option for that, you are correct. I'd probably tick that first option though in your case.

Also, are you sure your positive IgG was for Early Antigen (EA), or was it for VCA or Nuclear Antigen?

 

[keepswimming]

I have ticked the first one. These are my results, there wasn't a lot of detail on the results I was given...

IgG - Detected
EBNA - Detected
IgM - Detected
PCR - Negative

 

[sometexan84]

I have ticked the first one. These are my results, there wasn't a lot of detail on the results I was given...

IgG - Detected
EBNA - Detected
IgM - Detected
PCR - Negative

Nope, you did it perfectly!

That's an active primary infection btw. Although, your right, the lack of detail w/ the numbers missing... that makes it harder to interpret.... only slightly.

 

[keepswimming]

That's an active primary infection btw

I think EBV is at the root at my CFS. But because PCR was negative the hospital didn't think the other results relevant.

 

[sometexan84]

I think EBV is at the root at my CFS. But because PCR was negative the hospital didn't think the other results relevant.

I've heard this exact thing a bunch of times. Another HUGE point of friction that I am desperately trying to resolve.

Note there are no options available involving PCR testing. Also, some of the choices are incorrect.

As for PCR, I think it has to do w/ lack of standardization. No one knows what the cut-off is for positive negative, nor do they all use the same type of sample. PCR testing is all over the place right now.

 

[Wishful]

I could get a standard test done, but given how the typical testing is kind of meaningless (false negatives, and probably positives), I don't consider it worth an hour of driving...and the subsequent PEM.

 

[sometexan84]

I could get a standard test done, but given how the typical testing is kind of meaningless (false negatives, and probably positives), I don't consider it worth an hour of driving...and the subsequent PEM.

Tough it out man! I would get on a plane to freakin Bangladesh to get test or treatment if I had to. If it means getting one step closer to having my life back w/ 100% energy, there's nothing I wouldn't do.

 

[Heartl]

VCA IGM - Normal
EA IGG- 47.6 H
VCA IGG 750 H
NA IGG 150 H

 

[Wishful]

I would get on a plane to freakin Bangladesh to get test or treatment if I had to.

Me too, if there was a significant probability of benefit. All the doctors and tests so far simply convinced me that the chance of the present medical system coming up with a treatment that makes a difference is pretty much zero, and the chance of being worse off (side-effects, stress of visits, stress of disappointments) is probably slightly higher. The situation might be different if my ME was severe, or if I was young.

When I think of a cure at this point in my life, I don't really see my life changing much. Going through the hassle of a bunch of tests to maybe get a slight improvement is even less appealing of a goal.

 

[sometexan84]

VCA IGM - Normal
EA IGG- 47.6 H
VCA IGG 750 H
NA IGG 150 H

Awesome thx! I won't interpret, I want to see what you choose in the poll options. That's the whole point . I want to see how you interpret.

 

[sometexan84]

Me too, if there was a significant probability of benefit.

Man, if I ONLY did tests that I thought had a "significant probability of benefit", there is literally 0% chance that I would be where I am now, nearing full recovery. Majority of tests will be normal, swing and a miss. But if you're very purposeful w/ the testing, then you will hit on something important, w/ abnormal results. Multiple somethings.

And that's coming from someone NOT on insurance, I've had to pay for every single test I've done. So I've def been careful. But if I feel there's a 20% chance of getting relevant results, I do the test, absolutely.

Like CK Total (Creatine Kinase) test. I'm about to do that, and I'm feeling like maybe a 20%, maybe 30% chance I'll hit on something here? But I have reason to suspect. Plus, that's actually a cheap test.

All the doctors and tests so far simply convinced me that the chance of the present medical system coming up with a treatment that makes a difference is pretty much zero, and the chance of being worse off (side-effects, stress of visits, stress of disappointments) is probably slightly higher. The situation might be different if my ME was severe, or if I was young.

When I think of a cure at this point in my life, I don't really see my life changing much. Going through the hassle of a bunch of tests to maybe get a slight improvement is even less appealing of a goal.

That sounds sad to me. But I think I understand. And it's clear we're on totally different paths in life, you and I. Like, I would never settle for 90% recovery. But I also understand many are very happy just seeing improvements.

I just want to be able to exercise again . My CFS reached its peak when I was training for my first Spartan race.

 

[sometexan84]

Come on guys, need to get a few more results in before my big reveal!

 

[Wishful]

I'm surprised at the lack of response so far too, even if it's just "I haven't had any EBV testing done".

Hey moderators, would it be possible to have a "Hot Polls" (or whatever) listing on the main page to encourage more responses? Such data gathering is something that might help researchers, and thus might help all of us, with very little effort.

 

[sometexan84]

I'm surprised at the lack of response so far too, even if it's just "I haven't had any EBV testing done".

Hey moderators, would it be possible to have a "Hot Polls" (or whatever) listing on the main page to encourage more responses? Such data gathering is something that might help researchers, and thus might help all of us, with very little effort.

I second this! Or something like it. Gathering data from polls is sort of different from the regular threads.

 

[sometexan84]

Updated 8/4/20

At 24 Total Votes right now...

RESULTS: 14 out of 17 (82.4%) have Active EBV infection
(with 7 undetermined)

I will explain...

btw, I was really hoping for more results before I submitted this post. But, it's good enough.

I set this Poll up because after speaking w/ so many of you on this forum, it became very clear people did not know if they had an active EBV infection. In fact, many were sure they did NOT in fact have an active EBV infection. This is because either the patient or the doctor could not accurately interpret the test results.

I purposefully put choices in this poll that are actually incorrect answers. I wanted to see others' interpretations of their own results. I wanted to show others how important it is to be able to correctly interpret EBV test results.

Do you have an active EBV infection?
Red w/ strike-through are incorrect answers.

• Yes - I have high VCA IgM titers
  Votes: 531.3%
• Yes - I have high Early Antigen (EA) IgG titers
  Votes: 531.3%
• Yes - But my VCA IgM and Early Antigen (EA) IgG titers are normal
  Votes: 00.0%
• No - VCA IgM and Early Antigen (EA) IgG titers are normal
  Votes: 16.3%
• No - VCA IgM is normal and Early Antigen (EA) IgG titers are high
  Votes: 212.5%
• No - VCA IgM is normal and I haven't tested for Early Antigen (EA) IgG
  Votes: 16.3%
• I haven't had any EBV testing done.

Answer #3: No one has yet to mark this one, so that's good. It's incorrect because if you have normal results for IgM AND Early Antigen (EA), then the answer would be NO, you do NOT have an active infection.

Answer #5: If you have positive (or high) titer results for Early Antigen (EA), you almost always have an active EBV infection, even if IgM is negative/normal.

Answer #6: This is only HALF incorrect. It COULD actually be correct, but there's not enough information provided to make that determination. If you haven't had Early Antigen (EA) tested, then you don't know whether or not you have an active infection. So, this answer could in fact be "No", but w/out testing EA, there's no way to know whether you do or do not have an active infection.

So, here are the correct EBV lab interpretations to know:

VCA IgM Positive (Initial Infection, ACTIVE)
This means you have an active EBV infection and that this infection is not a reactivation of the virus, but the initial primary infection. And your body never subdued the initial virus.

Early Antigen (EA) IgG Positive (Re-Activated Infection, ACTIVE)
This means you have an active EBV infection. Now, it gets tricky here because people have been taught that if IgM is negative/normal, then you DON'T have an active EBV infection. However, if you have negative IgM and positive Early Antigen (EA), this means you have a RE-activation of the virus. So, you have an active EBV infection, it's just not from when you first got the infection, but rather it was dormant/latent, and got re-activated. This is where the confusion occurs.

*The whole idea here is to NOT confuse people. But, it should be noted that you can have positive EA IgG and VCA IgM. But IgM positive still means it's the initial infection.

Early Antigen (EA) IgG and VCA IgM matter. Positive for either means EBV is active.

VCA IgG and Nuclear Antigen IgG don't matter much at all.

That said, though the sample is small thus far .....
82.4% of us have active EBV infection

* Here's the caveat that I believe many want to know about...

Studies have been done showing positive Early Antigen (EA) titers in BOTH ME/CFS patients AND healthy subjects.

So, WHY, in some studies do healthy controls have elevated (EA) titers?

The answer is complex. But to this date, the main theory is that healthy individuals CAN have an active EBV infection. And that they don't get CFS symptoms because their EBV infection has not replicated in certain genes.

This hypothesis was given way back in 2010, that healthy individuals testing positive for Early Antigen (EA), have EBV replication in just the first 30 early EBV genes, which may not be enough to disrupt cellular metabolism causing CFS symptoms.

Whereas ME/CFS patients w/ the same positive testing for Early Antigen (EA) have EBV replication to middle and/or late EBV genes beyond the 50th linear gene, necessary for CFS illness.

That hypothesis was from 2010. Now here's something more people are familiar w/ as this was from an important 2019 study.

EBV-induced EBI2 gene is upregulated in CFS patients. So, this could suggest that EBI2 could be the culprit. And if an active EBV replication in Gene 2 (EBI2) is present, then CFS symptoms occur.

The point is this. Healthy individuals can have an active infection and not present any fatigue symptoms at all. Whereas someone w/ chronic fatigue can have the same test results as the healthy individual. The main difference being the gene expressions of that particular viral infection.

 

[Wishful]

The correlation is interesting, but it hasn't convinced me that "EBV is the Answer!" It might just indicate that some PWME have worse symptoms due to some form of viral infection. I did check a couple of threads about antivirals, and they don't seem to have all that high a success rate, so viral infections might just be a contributing factor for a subset of PWME.