I Tested High On Epstein-Barr

[sue1234]

I read through back posts about this, and was wondering if anyone from now has this problem? I had mono as a teen in 1978, but got well and went on with life. In the late 80s started my slow health decline with anxiety and glucose issues. POTS didn't hi until 2006, so don't think EBV has anything to do with my POTS, or does it? Did it reactivate at that time maybe? Anyway, I am not familiar with all the research on EBV and CFS, etc., so not sure what this means, if anything. My lab result was:

EBV, early antigen ab, Igg 34.2 (0 - 8.9)

Any thoughts from those familiar with this subject? I have NEVER been tested for this since I had mono in '78.

[looneymom]

Sounds like a good clue. Did they check the IgM? A possible theory is that it could be hiding in the cells or other organs and will come out to play when you have a new virus or infection in your body. Here's an article that might help.

http://www.endfatigue.com/book_notes/Fftf_chapter_5.html

[xRobin]

The research with CFS and elevated antibodies to some of the herpesvirus family such as EBV and HHV6 (and other viruses) is all over the map, with some researchers finding subgroups of CFS patients with consistently elevated titers, while others are not.

So, as I understand it, you get IgM antibodies during initial infection, then your body starts making IgG which gives you immunity. That's why people don't get mono twice.* Gradually IgG levels drop off. Most adults don't have elevated IgG titers to common viruses because they were exposed a long enough time ago that their levels have gone down.

An elevated level IgG level is difficult to interpret. Many clinicians will say it doesn't mean much. Healthy adults can have elevated IgG with no symptoms. But some CFS researchers are testing antivirals in patients with both elevated titers (IgG and IgM) and symptoms, with various levels of success.

I wish I had more succinct and helpful explanation. Most of this is at the research (not clinical) level. But, if you want to pursue this, an infectious disease doctor might be helpful.

I don't know about herpesvirus antibodies and POTS (I am new to POTS) but there is an overlap between CFS and orthostatic intolerance, though the symptom profiles are a little different.

*You actually can lose immunity if your IgG drops too low. Chicken pox and shingles stem from the same herpesvirus (varicella).

[lejones1]

I've had a similar issue with HSV1 (obviously another herpesvirus). I've had elevated IgM levels since I've had POTS - which can occur in healthy adults during cold sore outbreaks but I'm not getting cold sores and it seems to be constant. I've tried taking Valtrex a few times to see if it will help, but haven't been able to tolerate it.

I think the meaning of these levels is hard to intrepret and Robin gives a good overview of that. To slightly correct what she said...the EBV early antigen IgG level that you mention is different than just plain IgG. It is generally not elevated in healthy adults and usually means the virus is actively replicating in your body. http://www.cdc.gov/epstein-barr/laboratory-testing.html You could definitely consider trying antivirals.

So what's the connection? Well the herpesviruses all live in the nerves, so there's a possible connection there. And there's growing evidence that herpesviruses play some sort of role in triggering autoimmune disorders, like MS and Hashimoto's, so with the research suggesting POTS may be autoimmune there's another connection. I had a bad case of mono 18 months before getting POTS and my doctors seem convinced that was a triggering factor for me, so I've asked a lot about it it and the general consensus seems to be that for some people, there is definitely a connection between herpesviruses and POTS, but it's not entirely clear how it works. Molecular mimicry is one theory you could read about - basically the idea that some viruses can imitate certain cells in our bodies and trigger the immune system to attack itself rather than the virus.

Hopefully something good, like a new treatment idea, comes from this!

[Katybug]

Sue,

Hope this brings you some answers and avenues of treatment.

[TCP]

I had EBV in 1984 and the ME/CFS started. I had some autonomic symptoms over the years but it wasn't until 2006 that the POTS/Dysautonomia really kicked in. EBV may have re-activated in your case, but I think it started the autonomic dysfunction in me coupled with surgery around the same time. I now wonder if POTS and ME/CFS are one and the same thing. I was tested for EBV a few times over the years but results were negative.

Since writing this I have found out that I have long-long EDS and this predisposed me to getting ME and the EBV gave me Glandular Fever which triggered the ME and subsequent problems. If you check out any information about EBV it can cause many, many health problems.

[Chaos]

When I first became ill with this, I had a post-op infection that made me really sick and I never recovered from the illness. After 8 weeks, my doc did viral titers and several came back really high so he decided I must have had mono (at the age of 46!) and that's why I was still ill. My own research led to the POTS diagnosis and then last year I saw an ME/CFS specialist/researcher.

He said they think one of the tie-ins between ME/CFS and POTS may be that the viruses get into the baroreflex receptors and other portions of the autonomic nervous system where they hide out and then reactivate from time to time. The problem (he says) is that the viruses don't stay in the blood so blood tests and titer levels are not a good way to tell what's going on with them in the body but they are one way that the docs have currently to try to measure what's going on. They know the viruses get into the nerves and they think they get into the brain and bone marrow.

He said most adults will have a gradual dropping off of IgG levels over time after initial exposure to a virus but for some adults, they are finding that they are carrying high levels of IgG to several viruses as though the immune system can't fight off the viruses and is therefore constantly making antibodies. They are having some success, with some patients, by treating them with antivirals to help decrease the viral load.

This is where the NK cell FUNCTION test comes in. A lot of people with ME/CFS have been found to have decreased NK cell FUNCTION (not count). Since NK cells patrol for viruses and mutating self cells (tumor cells), having a low NK function would make sense along with high viral loads. A recent study released also suggests that ME/CFS patients have higher rates of cancer vs the national average, which also makes sense in this context.

If you want to explore this Sue, you probably want to see someone who specializes in CFS or "neuro-immune disease" or CVID or has some knowledge of it. Your standard immunologist probably won't be up on the latest research on this stuff and will blow you off. The specialists will usually run a large panel of tests looking at many different viruses, bacteria and perhaps fungal infections (based on your symptoms) to see what part of your immune system may or may not be working correctly.

[sue1234]

Looneymom, no they didn't check IgM. Thanks for the link, it sounds like everything is so complicated yet pertinent.

Katybug, thanks for the encouragement!

xRobin, lejones1, TCP and Chaos, thanks for all your stories and information. I am finding some of the same stuff as y'all have found, that some researchers don't worry too much about elevated levels. But, I also found quite a bit of Pubmed papers mentioning various viruses(EBV and the other herpes-related viruses) that reactivate and are sometimes linked to CFS, sometimes to various forms of neuropathy, and finally actually to dysautonomia. Because there weren't a lot of articles on the subject of dys., I didn't know if that happening was very rare or what. BUT, it has happened.

I had this test done as part of other testing done after my first visit with a Functional Medicine doctor. I saw her PA for the first visit for an in-depth history and initial labs. I will see the doctor next week. I can't wait to see what her "interpretation" is of this.

I've been telling my husband for years, that besides having the signs and symptoms of the POTS, I have also felt like I had the flu, just without any signs or symptoms! This might explain why.

[xRobin]

I've been telling my husband for years, that besides having the signs and symptoms of the POTS, I have also felt like I had the flu, just without any signs or symptoms! This might explain why.

Yeah, that's exactly how I feel - sick, like I'm coming down with something, except I feel that way all of time. Also, my lymph nodes are always sore. Like you, I had CFS for almost 20 years before POTS hit. Fun, huh?

Maybe Chaos will know more but I think there are only a few doctors in the country that treat with antivirals - Dr. Peterson in NV, Martin Lerner in MI (?), Montoya at Stanford and maybe some others I don't know. I'm not sure if the people who respond to antivirals see improvement in OI.

[Chaos]

There are some more that treat with antivirals as well, including Klimas, Rey, Kogelnik, Levine and some others. They have varying approaches to how they use them however.

My doc seems to think that for the people who are helped by antivirals that their OI symptoms improve as well. He's had a group that were able to return to work full time with treatment. They don't help everyone though.

There's a big study going on now on the role of HSV-1 (Herpes Simplex type 1, the cold sore virus) and it's role in Fibromyalgia and possible treatments for it.

That's how I've been describing my symptoms for years...like having a never ending case of the flu- without the fever and cough.

[Bigskyfam]

I tested positive for epsteinbarr in 1999. Never felt the same after. Diagnosed last year in the fall

[TCP]

Thanks, Chaos for all of that information. To me it makes perfect sense as viruses can hide in the body and stay activated or lie dormant. I don't think I'm going to see anyone in the UK with such up-to-date knowledge any time soon. We are so behind the times and maybe only get referred to a decent specialist if we can shell out many hundreds of pounds for travel, accommodation and treatment.

I was interested in a similar scenario in this article: http://simmaronresearch.com/2013/12/one-theory-explain-vagus-nerve-infection-chronic-fatigue-syndrome/

Thanks again for the detailed information. I wish you all well as I know how rotten this can be and I hope so much for help to come.

[Chaos]

TCP- Yes, you folks in the UK have really gotten the raw end of the deal on ME/CFS it sounds like. It's quite pathetic what you are being offered in the way of treatments. Hopefully enough research will start emerging from other places that the folks in your NHS will be forced to acknowledge their wrongs and start providing real treatments for you all. I'm so sorry for the way you are all being treated. Although, I must say the research coming out of Newcastle England is very exciting for both ME/CFS and autonomic dysfunction and the tie in between the two. They are doing some great research up there. Very exciting.

Frankly finding treatment here in the US is not much better unless, likewise, you shell out lots of money and travel cross country to find specialists who know more, but at least it's available.

Best wishes!

[xRobin]

I was interested in a similar scenario in this article: http://simmaronresearch.com/2013/12/one-theory-explain-vagus-nerve-infection-chronic-fatigue-syndrome/

Haha, the researcher actually a high school friend of mine!

He works in another field but is currently working on a small (pilot) study to look for inflammation in the vagal nerve in patients and controls via neuroimaging, in order to test his hypothesis. If he gets some preliminary data he'll hopefully follow it up with a larger study. Apparently it's very difficult to test for "smoldering" infections in nerve tissue because signs of infection can stay put there rather than spilling into an easy to access place like blood. One patient may show elevated titers and inflammatory cytokines in bloodwork and another may not.

Here's another article/interview if you're interested: http://simmaronresearch.com/2014/02/michael-vanelzakker-ph-d-talks-vagus-nerve-infection-hypothesis-chronic-fatigue-syndrome-mecfs/

I've heard some real horror stories about patient treatment in the UK. I am encouraged by all of the great research being done by many people. I don't know if you followed the Stanford/IACFS/ME conferences but there is good stuff in the pipeline, and I think the Invest In ME conference is coming up too? I think we all will eventually have access to decent clinical care. Let's all hang in there!

[TCP]

Yes, you are right about the poor services and treatment. The psychiatrists have got ME/CFS firmly in their grasp and only offer CBT and GET as possible treatments under the NICE/NHS guidelines and to date I know of no one who has actually been referred for such 'treatment'. At least some good studies have been completed and others ongoing. Their has finally been a pot of over a million pounds put forward by the Medical Research Council to look into the condition. I am looking forward to the day when the evidence is so overwhelming that the psychs have to back off.

[~elizabeth~]

When I first became ill with this, I had a post-op infection that made me really sick and I never recovered from the illness. After 8 weeks, my doc did viral titers and several came back really high so he decided I must have had mono (at the age of 46!) and that's why I was still ill. My own research led to the POTS diagnosis and then last year I saw an ME/CFS specialist/researcher.

He said they think one of the tie-ins between ME/CFS and POTS may be that the viruses get into the baroreflex receptors and other portions of the autonomic nervous system where they hide out and then reactivate from time to time. The problem (he says) is that the viruses don't stay in the blood so blood tests and titer levels are not a good way to tell what's going on with them in the body but they are one way that the docs have currently to try to measure what's going on. They know the viruses get into the nerves and they think they get into the brain and bone marrow.

He said most adults will have a gradual dropping off of IgG levels over time after initial exposure to a virus but for some adults, they are finding that they are carrying high levels of IgG to several viruses as though the immune system can't fight off the viruses and is therefore constantly making antibodies. They are having some success, with some patients, by treating them with antivirals to help decrease the viral load.

Hi, I'm wondering about all of this too. I had EBV in 1985, and have suffered with CFS type symptoms ever since. At the time, I had a bout of facial swelling with dyseasthesias, and was left with throat pain for years after. It probably triggered autoimmune thyroid disease, although there was a delay of some 10 years before I could get the condition diagnosed properly (GPs tested only TSH, rather than thyroid antibodies).

About 3-4 years ago, symptoms of autonomic dysfunction started to increase rapidly. First I had a loss of salivary function; a few months later, my eyes became red, painful and very swollen. A few months later, the POTS and facial erythromelalgia (EM) started quite abruptly. Since then, signs of autonomic dysfunction and pain have gradually got worse, the EM has now affected my feet badklyand now purple discolouration and pain is spreading gradually up my arms and legs.

Last year I had a work up for MCAS, and the immunologist found high IgG, polyclonal gammopathy and raise ANAs 1:160, with historical IgG against EBV. I'm increasingly of the mind that the historical infection and the neurological issues have to be connected. The small fibre specialist I saw kept on saying 'we have to find the cause of this' but the other neuros don't seem keen. I did raise trying IVIG with them, but they said it wasn't clear that risks would outweigh benefits.

I'm in the UK too, being seen at Queen Square. I am being taken seriously as they realise I'm in a desperate degree of pain from the EM and am refractory to all symptomatic relief. Just wondering who you saw about EBV and CFS, and whether this line of approach might yield anything if I can't persuade my neuros that this is an inflammatory condition.

[Chaos]

elizabeth- I PM'd you

[~elizabeth~]

Thanks xx

[castronovo112587]

I had an active ebstein barr(mono infection) in highschool. Since then my numbers have been through the roof but not the ones indicating an active infection. I believe many people with CFS have these high numbers.

[sue1234]

I saw the doctor yesterday, and I am going to start a course of an antiviral. She seems to think it might help, but even if it doesn't, she wanted me to be able to try and find out. I like this doctor, as she is testing things other doctors have not looked at, AND willing to try me on meds/treatments just to see if they help.

I can't wait to see if the meds help with my fatigue. It would be nice to have some mental/physical energy back.

She asked if I was still trying to get my vitamin D levels up(from the teens), and I told her I've been taking my vitamin D3 10,000 IU weekly, and even got some sun a couple of times last week. She said good, that vitamin D needs to come up to the 70s. I said I've been slowly working at it for a few years, really working hard at it this year, but it is slow to rise. She said "as it builds, it is just getting used up against the EBV", that vitamin D is actively involved in fighting infections. That would make total sense to me, as I cannot get my levels above 30ish(once). I am hoping the antivirals will knock the EBV down and at the same time I can get my vitamin D levels way up. Possibly that will keep the EBV forever low in the future.

[Katybug]

Hope this is a useful line of treatment for you, Sue. :-)

[looneymom]

Hi Sue,

I did not know this about vitamin D but it makes sense. Tyler's vitamin D had dropped down, and I went back up to the 10,000 mark with him. So glad that you have found a doctor that's willing to explore some other medications and treatments.

[corina]

Glad to hear you've found a doctor who's willing to work with you Sue!

[sue1234]

Thanks Looney and Corina. Yea, regarding vitamin D, it does make sense. Now that I really think about it, even though it is true that we all probably catch the flu and other viruses in winter because we are all cooped up together more, in summer our vitamin D levels are elevated(in general for "normal" people) and we all are less apt to catch the flu, etc., even though they are still around. I have got to make myself go out and get sun all summer and really build my stores up! It is just a challenge with the heat.

[Kris4444]

I am convinced that all of my problems started with EBV and continue because my titers are ridiculously high to this day. I have tried everything. Was on massive amounts of Valtrex. Nothing touched the titers. I had an immunologist suggest that I get IVIG therapy but my other titers IgG, IgM, were pretty normal so insurance wouldn't cover it. I finally just stopped obsessing over it because that is exactly what I was doing. I decided to get off of as many medications as possible. I'm feeling better than ever but I give the credit to my rheumatologist for not giving up on me and finally finding a medication to get my autoimmune condition under control which has helped everything else. I believe my autoimmune condition was created from my EBV. I was a fairly normal person before that horrible infection and I've never been healthy again since. I still believe my high titers will eventually end up causing major health issues but no one knows what to do about it and it isn't healthy for me to keep obsessing so I treat my body the best I can. I work out daily, eat right, no red meat...blah.