What does this mean? (EBV TESTS)

[Ema]

@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?

That makes sense (kind of, lol!).

This article seems to support that, bolding mine:

Rituximab binds CD20, a 33–35 kDa nonglycosylated protein expressed on the surface of B-cells. CD20 appears at the pre-B-cell stage in the bone marrow; it persists through B-cell life cycle and is lost during final maturation to plasma cells. The exact role of CD20 is largely unknown, but recent data indicate that it could play an important role in Ca2+ influx across membranes promoting activation of B-cells [Cartron et al., 2004].

Because CD-20 is not present in the antibody-producing plasma cells the level of serum immunoglobulin is not expected to change after rituximab infusion.

 

[Learner1]

@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!

EBNA and EA. But they don't always show up. Negative PCR doesn't mean you don't have it. Both our doctor and my local doctor said even though my PCR is now negative, it doesn't mean it's gone. He said sometbing about PCR not being the best test.

Which memory cells did he mean?

 

[Tammy]

I learned more about the EBV from Anthony Williams book than any other information I've ever come across. ...........Secrets Behind Chronic and mystery illness....... The health information is not woo woo like some will say. He goes into lengths about the virus and the stages.............and how many different strains of the virus there actually are. He also explains how EBV has a partner in crime.......which is the streptococous bacteria which causes all sorts of sinus, allergies and gut problems. The EBV can hit any organ, gland,(ie.thyroid) and CNS causing brain inflammation which causes so many neurological symptoms. I have never heard about how a bacteria and a virus could actually work together. I wish more people were open to this info as I would really like to get their take on it. Anyone can listen to his radio podcasts for free on EBV and Strep..........on soundcloud.

 

[Learner1]

@Ema @Gingergrrl The attached show the various ways EBV can present a typically in ME/CFS patients. There are a variety of odd things that can happen.

 

[Ema]

@Ema @Gingergrrl The attached show the various ways EBV can present a typically in ME/CFS patients. There are a variety of odd things that can happen.

I agree, there is no real "typical" presentation across the population. I think the best you can do is look at all of the evidence available, including history and symptoms, and then decide the best course of action.

Almost everyone has been exposed. The trick is figuring out if it's responsible for symptoms or not and if stopping replication with antiviral drugs will actually produce much in the way of practical benefit. And if AVs do produce benefit in a patient, was it because of the antiviral activity or one of the other documented effects of the drugs? It's all a muddle.

In the case of the OP, there simply isn't *enough* information, in my opinion, to say definitively one way or another. An elevated VCA IgG could be indicative or acute, past or a chronic reactivated infection. In the absence of other testing, there's no way to know which of those it is.

It was definitely interesting to read that some MECFS patients have low EBNA antibody levels. Mine have always been high, but I'd be curious to know about others.

 

[Hip]

I recently was looking into Dr Martin Lerner's hypothesis of abortive herpesvirus infection as the cause of ME/CFS.

Abortive infections are those where the virus enters certain cells that it may not normally infect, and in these cells, the virus cannot replicate (cannot make more viral particles), but nevertheless the viral infection continues to smolder away in these cells.

Because no new viral particles are being produced in abortive infections, there are very few viral particles in the blood, which would explain why PCR blood tests often come back negative in ME/CFS patients. However the immune system still produces an antibody response to these abortive infections, and that's why Dr Lerner used antibody testing in his ME/CFS patients.

 

[Tammy]

From Anthony's book:

Epstein-Barr Stage Three:
"Once the virus settles into your liver, spleen, and/or other organs, it nests there."

"From this point on, when a doctor tests for Epstein-Barr, she or he will find antibodies and take these to indicate a PAST infection, when EBV was in its mono phase. The doctor will not find the EBV presently active in the bloodstream. The confusion here is one of the biggest blunders in medical history--this is how this virus has slipped through the cracks."

"the virus is, in fact ,still alive and causing new symptoms...........and its eluding the tests. That's because it's living in the liver, spleen, or other organs, and the test to detect this has not yet been invented."

 

[Gingergrrl]

This article seems to support that, bolding mine:

Thank you for the additional article @Ema and I have a lot of reading to do over the weekend before my consult next Thurs. How much of the reading I will actually understand is another story LOL

Negative PCR doesn't mean you don't have it. Both our doctor and my local doctor said even though my PCR is now negative, it doesn't mean it's gone. He said sometbing about PCR not being the best test.

How would you interpret a case like mine where the PCR is now positive? Did our doc tell you that the PCR is not the best test? I think he ran it (at least partially) b/c my overall IgM was elevated to see if I was fighting an infection but am not sure and plan to ask him about this.

When your PCR was positive, do you remember what the number was? Mine is 110 (from LabCorp) but I assume different labs have different numbers?

Which memory cells did he mean?

I honestly have no idea and need to understand this better.

The EBV can hit any organ, gland,(ie.thyroid)

I have always wondered about this b/c I got mono from EBV in early 2012 and was diagnosed with Hashimoto's in late 2013.

@Ema @Gingergrrl The attached show the various ways EBV can present a typically in ME/CFS patients. There are a variety of odd things that can happen.

Thank you Learner for the additional articles/links and I bookmarked them to read over the w/e.

Abortive infections are those where the virus enters certain cells that it may not normally infect, and in these cells, the virus cannot replicate (cannot make more viral particles), but nevertheless the viral infection continues to smolder away in these cells. Because no new viral particles are being produced in abortive infections, there are very few viral particles in the blood, which would explain why PCR blood tests often come back negative in ME/CFS patients. However the immune system still produces an antibody response to these abortive infections, and that's why Dr Lerner used antibody testing in his ME/CFS patients.

Thanks @Hip and that is really interesting! Do you know which antibody tests Dr. Lerner preferred, or felt were the most accurate, for abortive infections of EBV?

 

[Gingergrrl]

Epstein-Barr Stage Three:
"Once the virus settles into your liver, spleen, and/or other organs, it nests there."

That is so interesting and my very first appt w/my ME/CFS doc in 2014, he said that the EBV virus hides out in the tissues and is often undetectable on blood tests (except in my case I was positive on five different EBV blood tests at that time once the results came back)!

@Tammy Does your book discuss how EBV later shifts into autoimmunity or cancer?

 

[Hip]

Do you know which antibody tests Dr. Lerner preferred, or felt were the most accurate, for abortive infections of EBV?

To my knowledge there are no blood tests at present that can specifically detect an abortive infection. But Lerner proposed ME/CFS was caused by abortive infection, so if you go on that assumption, then raised antibody levels provide evidence for the abortive infection.

 

[Gingergrrl]

To my knowledge there are no blood tests at present that can specifically detect an abortive infection. But Lerner proposed ME/CFS was caused by abortive infection, so if you go on that assumption, then raised antibody levels provide evidence for the abortive infection.

Do you know which EBV tests Dr. Lerner felt were the most accurate in general? I apologize if this was already said and I missed it. I bookmarked a ton of stuff to read later over the weekend that I have not read yet.

 

[Tammy]

@Tammy Does your book discuss how EBV later shifts into autoimmunity or cancer?

Yes......re: cancer...he mentions it in his latest book......"Thyroid Healing". This book is just as good as his first in my opinion.........and it goes into more info........beyond just the thyroid. I would HIGHLY recommend this book. One of my favorite chapters is just on symptoms because he explains many symptoms and their cause: ie) how a virus affects different systems in the body and how that creates a particular symptom. This is just a sample: Cold hands and feet are from viral neurotoxins causing nerve sensitivity to low temps, plus a sluggish liver causing a circulation issue. Both books are fantastic.

Autoimmunity is discussed in both books..............but in all honesty........Anthony's take on autoimmunity is not in line with the medical community. His take on it though makes a lot of sense to me and seems pretty practical.

 

[Hip]

Do you know which EBV tests Dr. Lerner felt were the most accurate in general?

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.

 

[Learner1]

How would you interpret a case like mine where the PCR is now positive?

If it's positive with any other EBV test also being positive, I think he'd say its active. But I'm not the doctor...

Did our doc tell you that the PCR is not the best test?

As I recall, both he and my primary doctor did. But, it was in the context of it now being negative for me and me asking if it was gone. Both said "Not so fast..." After that, he renewed my Valcyte prescription for 3 more months.

I think he ran it (at least partially) b/c my overall IgM was elevated to see if I was fighting an infection but am not sure and plan to ask him about this.

Probably a good idea. He has a lot more experience than I do, and you are unique. I'd trust what he says.

When your PCR was positive, do you remember what the number was? Mine is 110 (from LabCorp) but I assume different labs have different numbers?

200

 

[JeanneD]

I was treated by Dr Lerner for reactivated HHV6 and EBV, with good success. I will add to this conversation what he told me a number of years ago -- High IgG titres are not uncommon within several of years of the original infection. IgGs hang around to help most people ward off reactivation in the first years. Therefore, it is not really possible to draw a conclusion based on high titres after a "recent" original infection. Severe symptoms of a herpesviral infection along with a high titre might be indicative at that stage.

A high IgG titre decades after the original infection is not common in a healthy person, but if the individual is perfectly healthy and shows no symptoms of herpesviral infection, the most likely conclusion is still that there is no reactivation.

A person with high IgG titres decades after the original infection and clear typical symptoms of herpesviral infection is likely to have a reactivation, or partial reactivation (or was it "non-permissive" infection? It's been too long) even without the EA, especially if there is immune dysfunction, of if the reactivation is not recent/acute, but chronic.

Given the OP had a recent infection, it is unlikely a high IgG titre indicates an active infection. IgMs only show up in the original infection and wouldn't be expected in a reactivation, so lack of them doesn't help diagnosis in a reactivation. Elevated EA could be expected in a recent reactivation, however, so that might be the best indicator.

My daughter, who has been fighting EBV on and off for 10+ years gets tested every 6 months and sometimes shows EA even while her EBV-type symptoms are relatively mild. With her history, she gets antivirals with a positive EA because historically she continues to get worse if they hold off on the AVs.

Bottom line: Herpesviral titre tests are not a black-and-white, yes/no diagnosis criteria. They are clues, along with symptoms, immune status, and history, all of which a good doctor should consider in making a diagnosis.

 

[Gingergrrl]

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.

Thanks and I am going to ask my doctor if he thinks we should check my EBV IgM and Early Antigen (EA) in addition to the PCR test since I have not tested any of them since the end of 2015 (except this very recent PCR test).

As I recall, both he and my primary doctor did. But, it was in the context of it now being negative for me and me asking if it was gone.

So it was more that a negative PCR test might not be the most accurate to say that the infection has gone inactive vs. the opposite scenario in my case? I'll definitely find out more next week.

200

Was 200 the highest that your EBV PCR ever went? Mine was always negative (the PCR not the other EBV tests) until right now it is positive at 110. It's all very confusing!

 

[Learner1]

Thanks and I am going to ask my doctor

If it's the doctor we share, from what I've seen, he is excellent at pinpointing the right labwork to run.

So it was more that a negative PCR test might not be the most accurate to say that the infection has gone inactive vs. the opposite scenario in my case? I'll definitely find out more next week.

Yes, that was my understanding.

Was 200 the highest that your EBV PCR ever went? Mine was always negative (the PCR not the other EBV tests) until right now it is positive at 110. It's all very confusing!

I had it tested twice. The first time it was 200, the second negative. I'd trust what your doctor says.

 

[Rlman]

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.



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.

I'm 30 and so far IGG and IGM negative for EBV. i researched this and one study said that apparently 1 in 10 kidney transplant recipients are EBV IGG/IGM neg so its not that uncommon to be neg. by the way did your IGM IGG and EA become negative after the 3-4 years of being positive @Gingergrrl ?

 

[Gingergrrl]

The IgM and EA finally went negative in 2015 (I had mono in 2012!) but the IgG never went negative. I don't know what any of them are now except the EBV PCR is positive. Will be checking all of them later in Dec to see what they are.