EBV Test Interpretation- Quest Diagnostics

[aussie777]

Hi all, I just got my EBV results this week and needed some help interpreting it. My doctors seem clueless at this point.

I attached a picture file of my results.

I was diagnosed 2 years ago with Mono and never got over the symptoms... just to give you some background information.

I noticed there is no IGM chart on this test; why is this? I can't imagine these results saying anything else except a positive result, am I right?

 

[Valentijn]

According to http://labtestsonline.org/understanding/analytes/ebv/tab/test/ it indicates a reactivation of the virus.

 

[barbc56]

What does your doctor say about the test results?

Barb

 

[Jonathan Edwards]

According to http://labtestsonline.org/understanding/analytes/ebv/tab/test/ it indicates a reactivation of the virus.

Does it say that Valentijn? I don't see where it says that. My understanding is that these results indicate that aussie777 has had a previous EBV infection. That is all.

 

[Valentijn]

Does it say that Valentijn? I don't see where it says that. My understanding is that these results indicate that aussie777 has had a previous EBV infection. That is all.

A prior infection would be negative on the EAD.

 

[barbc56]

I thought a positive result means you have been exposed, but not necessarily an active infection. Im not sure how the distinction is made between exposure and an active infection.

Is this the test I am referring to?

Barb

 

[Jonathan Edwards]

That is not what is written in this site though, Valentijn. My understanding is that EAD IgG responses can persist, as one would expect for IgG, for a variable length of time and to diagnose reactivation it is necessary either to look for an IgM response or to find evidence of viral proliferation. If the question is reactivation I think aussie777 is right to say that would need an IgM titre, which I suspect is not routinely provided.

My advice to aussie777 is that there is no point in getting this test done if your doctor cannot interpret it. You would need to be assessed by an immunologist who understands the test. My understanding, as the son of the woman in charge of EBV serology for the UK in the 1970s-1980s, is that interpretation will depend very much on your clinical state. There is no point in trying to get an answer except from a specialist who can make an assessment in that context.

 

[Jonathan Edwards]

In 1989 (the most recent reference I can find) Wohlrabe et al. conclude: 'Therefore, it seems to be impossible to define the threshold titre for EA antibodies indicating active EBV infection. For this purpose probably a titre increase should be demonstrated in paired sera.' Which suggests that these results only indicate an infection at some time in the past. I hope that makes it clearer.

 

[Gingergrrl]

@Jonathan Edwards I will give you my EBV results and hoping your interpretation can help with clarifying things for @aussie777 and others in this position.

I had severe mono in 2012 which led to all kinds of autonomic dysfunction and then ME/CFS. I was tested (in the U.S.) by a CFS specialist last month and was positive on five EBV tests (IgM, IgG, Early Antigen, Viral Capsid Antigen, and EBNA.) The sixth test (a blood PCR test) was negative but he said that was not surprising b/c EBV hides out in the tissues and not in the blood serum (I am paraphrasing and not directly quoting him!)

He said I had a viral re-activation and I am now on an anti-viral. I do not really understand the differences between the five EBV tests except that IgG alone just shows past antibodies but the others are for current re-activation. Is that correct... sort of?

 

[minkeygirl]

This is per Dr. Rey

If IgG is high and IgM is low, it means that you had an infection in the past.

If IgG is low and IgM is high, it means you have an active infection, but this is the first time.

If IgG is high and IgM is high, it means that you have had the infection in the past and you have an active one now again. Or you have an active infection and you have had it for a while.

Obviously if both are low, you don't have it and never did.

 

[Ema]

This paper from Holtorf may help to explain some of the confusion in interpreting the panel:

Numerous studies have demonstrated infections in chronic fatigue syn- drome and fibromyalgia. These include viral infections of Epstein bar (EBV), cyto-megalovirus, HHV-6, and bacterial infections such as mycoplasma, chlamydia pneumonia (CP) and Borrelia burgdorferi (Lyme disease).

There is controversy regarding the presence of active infection in these conditions be- cause physicians, including infectious dis- ease specialists, do not understand that the standard way to diagnose acute infections, an elevation of IgG and IgM antibodies, is not a sensitive means of detecting chronic infections in these patients (1,2,3,4,5,6,7,8,9 ,10,11,12,13,14,15,16,17,18,19,20,21).

With an acute infection, the body will start pro- ducing IgM antibodies against that infec- tion and then start producing IgG antibod- ies after a few weeks so there is an elevation of both IgG and IgM antibodies. Chronic reactivating infection, such as those men- tioned above, do not stimulate IgM anti- bodies as they are not new infections but rather intracellular reactivating infections, so most doctors, again including infec- tious disease specialists, will tell patients who have elevated IgG antibodies that they had an old infection or previous exposure and that there is no evidence of or they do not have an active infection because that is what they learned in medical school.

This standard way of detecting active infections has clearly been shown to be inaccurate and miss the overwhelming majority of patients with active infections (1,2,3,4,5,6,7,8,9,10,1 1,12,13,14,15,16, 17,18, 19,20,21).

https://www.holtorfmed.com/download...Chronic_Fatigue_Syndrome_and_Fibromyalgia.pdf

Dr Lerner also uses a high EBV-EA as a marker for reactivated infection and measures progress to antiviral treatment by those titers.

 

[heapsreal]

Hi all, I just got my EBV results this week and needed some help interpreting it. My doctors seem clueless at this point.

I attached a picture file of my results.

I was diagnosed 2 years ago with Mono and never got over the symptoms... just to give you some background information.

I noticed there is no IGM chart on this test; why is this? I can't imagine these results saying anything else except a positive result, am I right?View attachment 8128

Do you know if total lymphocytes are high or cd8T cells are high as they can be elevated from ebv but not specific?

 

[heapsreal]

can always trial an antiviral, retest and see whats happening and monitor your symptoms. Thats probably more accurate then any test.

 

[aussie777]

What does your doctor say about the test results?

Barb

My doctor tells me it is a past infection- however, if all my titers are positive what makes him say this?! A person going through the acute stage would have the same high level titers as me, right? It makes no sense to me. I'll I can say is doctors are incompetent, and rightfully so, at diagnosing and interpreting EBV results. There's not enough awareness out there. If only they were in our shoes. Personally, I know I am going through chronic mononucleosis resulting in CFS- my symptoms are the same as when I went through the acute part of the infection, only less intense. I still have yellow mucus and go through acute stage symptoms when I exercise or drink too much caffeine- it's as if my body has trouble regulating the virus when it is pushed too far. There's my rant for the day, sorry

 

[aussie777]

can always trial an antiviral, retest and see whats happening and monitor your symptoms. Thats probably more accurate then any test.

I just need a doctor willing to do so. After 5 or so MD's, I haven't found one that even has considered it. I did the Valtrex treatment myself through an online pharmacy for 2 months and had significantly positive results in regards to decreasing the severity of my symptoms. But, I can't do that anymore because I don't have the funds to continuously do it every single month for however long it takes- I'm still in university.

 

[heapsreal]

I just need a doctor willing to do so. After 5 or so MD's, I haven't found one that even has considered it. I did the Valtrex treatment myself through an online pharmacy for 2 months and had significantly positive results in regards to decreasing the severity of my symptoms. But, I can't do that anymore because I don't have the funds to continuously do it every single month for however long it takes- I'm still in university.

Online Is probably cheaper than locally.
can I ask which lab you got the titres measured? Dam hard to find a place here in oz that does it??

 

[Gingergrrl]

My doctor tells me it is a past infection- however, if all my titers are positive what makes him say this?! A person going through the acute stage would have the same high level titers as me, right? It makes no sense to me.

@aussie777 I totally agree and how could someone with first-time acute active mono have identical titers as someone like us and then we are told that it only shows past infection? I feel like only a CFS specialist really knows how to interpret these tests although even my local ND told me that positive IgM and EA show current re-activation vs. past infection.

 

[Valentijn]

That is not what is written in this site though, Valentijn. My understanding is that EAD IgG responses can persist, as one would expect for IgG, for a variable length of time and to diagnose reactivation it is necessary either to look for an IgM response or to find evidence of viral proliferation.

It can persist without active or reactivated infection, but 80% of the time it's elevated, that isn't the case. According to that site anyhow ... I can't say it's anything I've looked into extensively

And if taking the clinical picture into account, I can see not getting concerned about the positive results if symptoms are absent. But in the case of an ME patients, the EBV symptoms (swollen lymph nodes, sore throat, fever, fatigue) are actually part of the definition of our own illness.

Hence it seems to make sense to take the result somewhat seriously, instead of automatically assuming that someone highly symptomatic and with a positive result is one of the lucky 20% without an active infection in that situation. Yet that is what doctors will often rationalize even with very sick patients: "An abnormal result (which I don't really understand anyhow) isn't a problem if you're not sick, ergo it's never really a problem and we can just ignore that result."

Ideally there will now be more testing to rule out that 20% chance, but that isn't always feasible when someone is paying out of pocket for the testing, and/or dealing with reluctant doctors.

 

[Jonathan Edwards]

I realise that what I am saying is not popular with all. However, I prefer to base my thoughts on the work of people who have worked in government or university funded institutions and produced peer reviewed scientific papers, like my mother did, than on the opinions of commercial practitioners expressed on websites and handouts for patients, which are designed to sell to the patient what they want to hear.

I think it is worth thinking this through because I see a very real danger here. The key problem, as highlighted on PR, is that many doctors think 'ME' is not an illness, but a false belief. How you can falsely believe you have pain I don't know, but if the ME community does have false beliefs about infections then it's just too easy for doctors to assume that is all there is to it - false beliefs encouraged by quacks. I am not suggesting that all these EBV titres mean nothing. But what I think is likely is that they mean something more complicated than 'reactivated infection'. Somebody said that virus might not be found because it hides away in tissues. But in simple terms EBV infection hidden away in tissues is what all normal people have. It only becomes a 'reactivated' infection, if the virus starts being exported and gets into tissues other than B cells and causes symptoms directly - in which case you should find it there. If it is actually causing a sore throat, for instance, my guess is that you should find virus in saliva. Note that even normal people maybe have a bit of 'reactivation' with EBV in the saliva some of the time, because when I got mono at 18 my girlfriend was perfectly fine.

So why don't we try and think of a more subtle reason for linking these tests to some of the real causes that cause real MEs. Sjogren's syndrome is interestingly like CFS in that people have terrible fatigue and pain but nothing to show for it in the way of signs - except in their case dry eyes and mouth and some strange antibodies. They often have raised titres to all sorts of antigens. In lupus people have raised titres of antibodies to things they have never come across. So maybe the EBV assays are telling us something about an error in the way the immune response to virus is behaving. EAD IgG falls off long after infection in most normal people, yes. But that is not true for people with some immunological diseases. At least some people with ME look likely to have an immunological disease.

OK, so that is speculation, but I am going to suggest a test of the two theories. How many people with ME on PR are aware of having infected another person with EBV through close contact? This would not happen very often because something like 80% of the population are infected as infants and nobody knows about it. You would probably have to get pretty close to a teenager or young adult who had not had childhood infection - hence the old name of 'the kissing disease'. But has a case of infection of another person by a person with ME (more than 6 months after an initial infective episode) been documented?

 

[Gingergrrl]

@Jonathan Edwards I have to respectfully disagree with you as I was diagnosed with viral re-activation of EBV by one of the top CFS treatment centers in the US (OMI) and they are very up to date on the most current research.

I had high IgM and EA yet it has been 2.5 years since I had mono. My diagnosis was based on real science and not on a hand-out that I got on the internet. I have been on an anti-viral for three weeks and honestly have already felt some improvement.

Please know I am posting this with the upmost respect to you to further dialogue and all of this is very helpful to me in my treatment journey.

Also wanted to add there were many viruses that I had high IgG but NOT IgM and was told they were inactive and only showed past infection (unlike the EBV.)