Maybe this is a chicken or egg question but wondering . . . .

[TiredPT]

Based on a suggestion from a thread, I started creating a timeline in preparation for my neuro appointment in April then started to wonder . . . .

Quix has discussed the known connection between chronic high Epstein Barr Virus titers and MS but does anyone know whether EBV is actually reactivated during an exacerbation???  Hiding the actual problem so that all the symptoms are just blamed on the reactivated virus.  I just feel what is really going on with me is MS but am struggling with the fact that I don't want to come off to the neuro as though I want it to be MS . . . . like so many others here, just looking for a name; would seem so much easier to deal with if there was a logical explanation instead of people continuing to tell me that it is in my head . . . . I JUST WANT TO SCREAM, YOU'RE RIGHT!!!!  MY HEAD IS WHERE I PERCEIVE THAT DESPITE THE FACT THAT I LOOK GOOD THAT I FEEL TERRIBLE!

[TiredPT]

Thanks for responding.  Went back and read my post and really wasn't clear in what I was asking . . . . will try better this time.

In MS, your body attacks itself and destroys the myelin sheath because it sees it as an outsider.  This is an immune response right . . . . if your body is trying to fight an outsider, will the antibodies to other things raise as another immune response?

I have never tested positive for the actual virus but every time I go through one of these episodes and the EBV titers are checked, I have extremely high IgG levels (anywhere from 10-20X of what is considered positive) and my prior physician would tell me that it was defined as "chronic reactivated or convalescent phase" mono despite the fact that the actual virus is never detected in my system.  I don't guess I understand what this means.  The levels that are always way high are:

EBV Ab VCA, IgG (last test was level of 2161 when >120 positive)
EBV Nuclear Antigen Ab, IgG (last test was level of 1197 when > 120 positive)
EBV Early Antigen IgG (2.35 when >1.1 positive)

EBV IgM results always negative

I keep trying to find literature on all this and the neuological manifestations of EBV and having trouble.  Maybe I'm just not looking the right spot.  Any resources you might direct me to would be helpful.  I'm trying to do the timeline and make everything as thorough as possible prior to the neuro appointment, hoping that MS, Lymes, whatever, I'll be able to leave the appointment with a plan rather than just more unanswered questions.

I hope this makes more sense and that I'm not being circular.  Thanks so much.

[Quixotic1]

No, the evidence is not that reactivations of the EB virus trigger a relapse.  The link seems to be in the dysfunctional response the body has to handling the virus in the first place.  This dysfunction is what seems to be a the root of the problem in MS.

Jen - states what you should do exactly.  Do not get into debating the empirical science with your doctor, nor into trying to teach him.  You need to present "what you are going through and suffering."  Present the problem, not your interpretation of it.

The antibodies that are active in a relapse are just what she said.  The are Autoimmune antibodies against parts of the nervous system not antibodies against the various viruses.

Quix

[jensequitur]

The best way to present the symptoms... is just to present the symptoms.  Don't talk about what you think it might be.  You feel how you feel - the doctor is there to make you feel better, not to tell you that it's all in your head.

As far as I know, no viruses are reactivated during an exacerbation.  When you're going through an exacerbation, the antibodies are more active in your CSF, and show up in a spinal tap - but the immune system is what's active, not the virus.

There are several viruses that show up consistently in an LP of MS patients.  Epstein-Barr, herpes simplex, and chicken pox are the three I remember as showing up most often.  However, these are all very common viruses - statistically I'm not sure how much of a difference it makes.