Elevated EBV, HHV 6 -- what does this mean?

[Ema]

Yes, I know I have a messed up immune system. I was diagnosed with Celiac Disease 10 years ago. I have low white blood cells, all types. I seem to get these sinus infections and then I can't get rid of them.

You might want to get your IgG levels tested, both total and subclasses 1-4. Recurrent sinusitis is a common sign of primary immunodeficiency (and other things too!).

 

[halcyon]

No, please tell me anything you can think of that I should ask her.

I would ask for coxsackie B and echovirus antibody panels. Amity ordered both of these for me. These can both be done by LabCorp, the test codes are 816869 and 823361.

 

[heapsreal]

If your nk function or numbers are low it can leave you open to infections and reactivations.
the role of nk cells is too fight infections and cancer cells.

 

[Eeyore]

"chronic ebv" is redundant. EBV is ALWAYS chronic - as are all 8 members of the herpes virus family. The body never eliminates a herpes virus.

 

[Violeta]

I feel it's important to address viruses, especially epstein barr virus, as it is found to lead to autoimmunity and cancer. I chose to deal with it with herbal antivirals, herbal immune enhancers, and colostrum.

EBV and autoimmune diseases:
http://www.hindawi.com/journals/jir/2013/535738/

EBV and Hodgkin's:
http://www.uptodate.com/contents/the-role-of-epstein-barr-virus-in-hodgkin-lymphoma

EBV and liver:
http://www.hindawi.com/journals/av/2012/987471/

EBV and heat shock protein:
http://www.ncbi.nlm.nih.gov/pubmed/8986292

How EBV leads to autoimmunity:
http://selfhacked.com/2014/06/27/homing-fundamenal-cause-epstein-barr-reactivation/

So it doesn't seem wise to ignore it just because 90% of humanity has it.

 

[heapsreal]

Herpes viruses are never eliminated but reducing viral load and trying to prevent reactivation has helped many cfsers feel better.

 

[Ema]

"chronic ebv" is redundant. EBV is ALWAYS chronic - as are all 8 members of the herpes virus family. The body never eliminates a herpes virus.

That's how it is classified on the lab results so it makes perfect sense to use the same terminology here. You can infer the "active" or "latent" part, surely.

 

[duncan]

I think the question can be opened up to: Why are PWME generating labs that repeatedly demonstrate elevated values across a wide spectrum of pathogens?

I think the fact that we are out of range or positive for so many diseases is not normal, even if the levels revealed are not necessarily indicative or proof of active infections.

For instance, if I test for a pathogen, I'm pretty confident I will test elevated. In fact, those rare times I do not, I am surprised.

This would include EBV, HHV-6 & 7, coxsackie A & B, parvovirus etc, etc.

Are these not a hallmark of ME/CFS - these almost pervasive elevated titers?

Which brings me back to the thread title: What does this mean?

 

[Violeta]

I think the question can be opened up to: Why are PWME generating labs that repeatedly demonstrate elevated values across a wide spectrum of pathogens?

I think the fact that we are out of range or positive for so many diseases is not normal, even if the levels revealed are not necessarily indicative or proof of active infections.

For instance, if I test for a pathogen, I'm pretty confident I will test elevated. In fact, those rare times I do not, I am surprised.

This would include EBV, HHV-6 & 7, coxsackie A & B, parvovirus etc, etc.

Are these not a hallmark of ME/CFS - these almost pervasive elevated titers?

Which brings me back to the thread title: What does this mean?

It means a lot of our systems are messed up and our cells aren't functioning correctly. Expansion on that would probably take a book.

 

[IreneF]

I'm a pt at Stanford. I've had a couple courses of abs for M. pneumoniae that didn't help with my overall condition. I no longer pay attention to my Herpes titers but I am sticking to the Valcyte and anti-inflammatories colchicine and Plaquenil. I am willing to stay on them for years as long as my liver and kidneys behave. It is my no means a quick fix.

Dr. Montoya is talking more and more about inflammation and less and less about infection. It could be that some as-yet unknown underlying cause makes the antibody titers rise.

 

[Eeyore]

I think the question can be opened up to: Why are PWME generating labs that repeatedly demonstrate elevated values across a wide spectrum of pathogens?

I think the fact that we are out of range or positive for so many diseases is not normal, even if the levels revealed are not necessarily indicative or proof of active infections.

This is the fundamental problem - there really is no evidence that ME patients do have titers against anything at different levels or frequencies than the general population. The studies that have done have almost universally shown no difference, and those that showed anything were really borderline and within the margin of error. Studies of pathogens by Lipkin and others have shown nothing abnormal.

Despite a clear viral onset in my case 2 decades ago, I do not have unusually elevated titers to much of anything. I'm negative for all the herpes viruses except 3 (VZV) and 6 (had roseola as an infant). Never tested for 7 or 8, but good chance I have 7 as it's common. Negative for parvo. Negative for all the coxsackie viruses. Negative for lyme (on about 10 different kinds of tests - I live a few minutes from Lyme, CT, and my doc REALLY explored that from the day I first got sick). I used to fixate on my elevated HHV6 titers (1:40 IgG) - but eventually realized that they are not at all abnormal.

It is heartening to see Dr. Montoya looking at inflammation. I think that will yield much more interesting results. I have great respect for him. He is looking and he is thinking - and I think he's very smart - and we really need prestigious docs at major institutions to help us find what's really going wrong. If it's not a pathogen - and I believe that is likely - we need to look at other things or we'll just keep getting negative results that tell us nothing and perpetuate the false stigma of a fake disease that we all have to live with - I know we really all want to be able to see a doctor or even tell a friend and not get those skeptical looks where one realizes that the other person thinks he/she is nuts, a hypochondriac, or whatever else. We need a biomarker - and if there is no infectious biomarker to be had (and this is what we've looked the hardest for), then we need to look elsewhere. ME is real - so something is wrong - and if something is wrong - it MUST have a marker. I want to know what that marker is. It's impossible to feel like we do and have nothing abnormal - we just haven't found the abnormalities yet.

 

[SOC]

"chronic ebv" is redundant. EBV is ALWAYS chronic - as are all 8 members of the herpes virus family. The body never eliminates a herpes virus.

"Chronic EBV" is often used as short-speak for "chronically activated EBV". Yes, all herpesviruses remain in your body for the rest of your life. For people with healthy immune systems, those viruses remain latent. The point with PWME is that many, or most, of us do not have healthy immune systems and have chronically activated or frequently reactivated herpesviruses. That is a different situation from the usual latent infection healthy people have.

People with chronically activated or frequently reactivating herpesviral infections need antivirals. That's what antivirals are for. People knownto have reactivating herpesviral infections include transplant patients, HIV patients, and patients with immune dysfunctions such as PWME.

Extremely high antibody titres are not common in adults many years past the original infection. Antibody titres drop over time. That's why the authorities are now recommending shingles (chickenpox) vaccine boosters for people over a certain age -- because over time antibodies can diminish to the point of not being able to protect from herpesviral reactivation. When instead of slowly diminishing, antibodies increase dramatically over time, that's reason to investigate further, especially if you have immune problems.

 

[Eeyore]

Show me some evidence that ME patients have higher titers to herpes viruses - I haven't seen any.

The virology community seems to be moving more toward the idea that herpes viruses are always active at a low level. Infected cells are probably always producing some low level of virus. So far this has been best studied with VZV and also with the HSV's.

Titers to herpes viruses actually tend to increase with time, not decrease, as the viruses always chronically reactivate and continue to prime the immune system. Higher avidity antibodies are also selected. However, over longer time periods, old age causes a reduction in immunity. So having it longer means higher titers normally, but getting old means lower titers - so for most people titers will increase for a long time then start to taper off as age becomes more relevant. That's why high dose VZV vaccines are given to older people. It's probably not relevant until well into old age, without major differences throughout most of adulthood. Teens have very strong antibody responses.

 

[Valentijn]

I've had ME since I was a teen and I still don't have EBV, which is rare - the vast majority of people my age have it.

This doesn't seem particularly uncommon for ME patients. I also test completely negative for ever having had EBV, even though I certainly should have had it by now.

Is it a fluke, or is our immune system somehow dysfunctioning to the extent that we produce false negatives? Do we have a different version of it which doesn't show up on the tests and/or results in specific problems, such as has been found to possibly happen in MS patients?

 

[heapsreal]

This doesn't seem particularly uncommon for ME patients. I also test completely negative for ever having had EBV, even though I certainly should have had it by now.

Is it a fluke, or is our immune system somehow dysfunctioning to the extent that we produce false negatives? Do we have a different version of it which doesn't show up on the tests and/or results in specific problems, such as has been found to possibly happen in MS patients?

Many of the original lake Tahoe outbreak diagnosed with chronic ebv years later tested igg negative to ebv. Sounds like a part of the immune system being dysfunctional .

The above happened to me almost 20 yrs after Tahoe and on a different continent.

 

[Violeta]

ebv ab vca, igg 370.0 0.0-17.9 U/mL
c. pneumoniae igg serum 1:128 < 1:64
m pneumoniae igg abs 212 0-99 U/mL
HHV 6 igg antibodies 3.25 High

Quote, Eyeore:
This is the fundamental problem - there really is no evidence that ME patients do have titers against anything at different levels or frequencies than the general population. The studies that have done have almost universally shown no difference, and those that showed anything were really borderline and within the margin of error. Studies of pathogens by Lipkin and others have shown nothing abnormal.

Despite a clear viral onset in my case 2 decades ago, I do not have unusually elevated titers to much of anything."

Just to bring the topic back to baseline, the OP's numbers are clearly high.

 

[Eeyore]

Violeta - they aren't clearly higher than is common in the population, and they aren't clearly responsible for the symptoms.

 

[Eeyore]

@heapsreal mentions the NK cell testing - that may be worth looking into. I'd suggest you do it through Mayo Medical Labs (Mayo Clinic) - as they have the most accurate test of NK lytic function. Quest does not run the test at body temperature, which can matter in some cases (certain genetic variants code for proteins that are thermolabile). There has been a lot of interest in NK cells for many years with ME, and while there is nothing definitive, I think it's worth looking at. I've had mine tested and for years I got very abnormal results, but more recently not as abnormal - and I'm not sure why really.

 

[Eeyore]

@Valentijn - I had an equivocal test for EBV once from Quest. Since then I've been consistently negative. I was also tested when I first got sick a lot, and negative. I am HLA-A1/A1 though, which generally isn't very good for producing antibodies to EBV. People with A1 have more frequent cold sores and herpes outbreaks too, although I've never had either, and test negative for those viruses. Chicken pox was normal for me as a kid, and my titers checked as an adult were normal range as well. Clinically, nothing really seems too weird about my reactions to any herpesvirus. I also have the less functional allele of IL-28B, which has been correlated with increased susceptibility to herpesviruses (and others, especially hep c, which I also do not have), so you'd think I'd show more evidence if I were positive. People with A1/A1 are much more likely to develop acute glandular fever, which I never had, when exposed to EBV or CMV. HHV6 PCR testing in me was negative even when titers were at their highest.

 

[duncan]

@Eeyore, I am a little confused as to your position on PWME frequently testing with elevated titers (or otherwise out-of-range) for several pathogens.

At one point you seem to suggest this tendency is actually common, and one should not place much store in it.

But just in your last post, you seem to consider it noteworthy that your chicken pox titers fell in normal range.

So, do you think it meaningful if someone tests out-of-range a) for one or two infections, and b) for a multitude of infections?