EBV and MS

[TiredPT]

I am a 33 w/o female with apparent recurrent exacerbations of EBV that began in 2002 a few months after the birth of my 1st child.  Had been sick since Thanksgiving with symptoms starting similar to sinus infection (facial pain and sore throat).  After 2 course of antibiotics and steroids, I was admitted to the hospital for IV hydration and further testing.  The mono spot was negative but the other EBV tests indicated either recent or chronic reactivated state -- don't remember ever having mono before.  Had no enlarged lymph nodes or spleen.  Since 2002, I have had several other similar episodes, but each keeps getting worse and leaving lasting deficits.  Last March (3 1/2 months after the birth of my son), I had an exacerbation that left me with extreme fatigue, brain fog, severe bilateral facial pain, significant vision changes (had to start wearing reading glasses) right eye worse than left, generalized weakness and a bunch of other stuff for months; again test came back indicating chronic reactivated EBV.  Saw a neurologist in June who saw swelling of the optic nerve and pupil changes that indicated a possible brain tumor or pseudotumor but MRI and lumbar puncture results were normal -- I have copies of the reports if this would help anyone.  I switched primary care physicians in September, and he repeated the tests for EBV at that time due to continued fatigue.  At that time, the IgG level was 2187 with positive being anything above 120.  Now this was a full 6 months after the supposed reactivation.  The facial pain gradually lessened, and the vision improved although a blurriness and feeling of fullness remain in my right eye.  In January of this year, I had another recurrence but this time I am having all these generalized neuro problems.  I had severe difficulty with memory, concentration, focus,  and word searching.  I have icy hot sensations in my legs (mid thigh down to feet) constantly and 50% time in my arms (mid upper arm down to hands).  I will have prickling pains in my legs and sometimes my feet have a vibrating or tingling sensation.  During the exacerbation, I had severe burning and cramping in my lower legs -- like you've exercised too hard for too long -- and knee and hip pain that made it difficult to sleep.  The cramping and joint pain has mostly resolved but the burning and icy-hot sensation running down my extremities remains.  The vision has also been affected, not as bad as last year but now having to return to reading glasses sometimes.
My question is . . . . . is this typical with recurrent EBV???  Each time to get worse with progressive deficits?  I am concerned that it could be MS even though the brain MRI and lumbar puncture were "normal."  I live in a rural area; my current physican is trying and has referred me to an opthamalogist and neurologist but I cannot be seen for a few months.  Hoping to get some insight as to whether this is a possibility or anyone else has experienced this prior to their onset.

I appreciate any feedback anyone can give me.   Thanks so much!

[EBVchallenged]

Thank you very much for caring!

[Lulu54]

Hi EBV,
Welcome to this forum - I think you will find lots of company here to help calm your nerves and quiet your fears.  Quix is off line for a few days to spend time with her sick mother - I don't want you to feel like you re being ignored.

Can you do me a favor and copy your background and question and begin a new post ?  That way everyone will see it, and not just those of us looking at these older threads.  There are a number of people here who know quite a bit about EBV and I'm sure they will be happy to jump in and chat with you about it.

In the meantime, please try to relax a bit - the stress is dangerous too!

My best, Lulu

[EBVchallenged]

Thank you sooo much for your postings! I was diagnosed with EBV in May with Capsid Ag IgG values of around 6. My Bun is higer than normal (22), my Globulin is consistently lower than normal (2.3), and my ALT (SGPT) was higher than normal (42) only in the moste recent tests. The rest of my blood profile shows no abnormalities.

My doctor was very quick in diagnosing EBV and is moitoring my blood work every 6 weeks to 2 months or so. The fatigue is ongoing and sometimes overwhelming, muscle and joint pain comes and goes, brainfog is almost always there, lack of my previous ability to focus, and to add to it all, I am severly depressed! I have fevers that come on during the day and get higher as the day progresses. It is a miserable existence. Aside from taking supplements to strenghten my immune system and exercising whenever I can, I feel my condition is getting worse, not better. My physician told me that an EBV episode can last up to 18 months, and that I have to be patient, take good care of myself, don't overexert myself and the prognosis will depend a lot on my metal attitude. I understand the psycho-somatic connection, but aside from HAVING to earn a living (single parent), feeling lousy most of the time, having NO drive, I am very concerned that I might be developing something more serious such as lymphoma, lupus, RA or God knows what! My father died of an aggressive form of leukemia, and I am very scared. Please respond, if you possibly can!

[TiredPT]

Thanks for all the information!

I saw an osteopath during the time between seeing an ENT and seeing the neurologist in June -- hoping that maybe the lasting facial pain was a structural problem.  Anyway, he did some manual adjustments, determined it was neurological then put me on dexamethasone and Valtrex.  I was only on the Valtrex for 10 days, maybe not long enough to know, but didn't notice any improvement in the facial pain.

They mentioned the possibility of Trigeminal Neuralgia (all my pain was in the 2nd branch region) but it just wasn't a classic presentation.  My pain was more of a constant ache, like I'd been punched in the face and it was equal on both sides.

The neuro symptoms in my arms, legs, face, etc, have only been present since January.  The WORST episode with the EBV titers was actually last March and the symptoms of low grade fever, nausea, facial pain, weakness, etc lasted for months but I was able to return to work after 10 days.  I guess what I mean specifically when I say that it seems progressive is more in the realm of FATIGUE.  I am a physical therapist and used to get up at 5-5:30 every morning and exercise, in addition to exercising with my patients at work.  After the episode in March, I have never completely recovered my energy.  Each time this happens, it seems that I loose a little bit more although the other symptoms may fade.  

[Jazzyfizzle]

Hello Tired,

I am one of the patients who had 4 elevated titers repeatedly and is being treated with anti-virals. I have been on them for over a year. I did see a dramatic improvement in fatigue and pain as Quix wrote about. I nowhere near normal or healthy still, but I spent much more time off the couch and up moving about.

In the last 6 months I have slacked off taking my anti virals like I am supposed to be, partially because I wanted to see what would happen, and partially because its a major pain taking so much medication every day. ;-)  I know.. bad. lol

After having what I consider a really good year for 2007 I hit a terrible spot in December and January that just passed. Was it because I wasn't taking my meds like before & the Ebv gained ground, or was it because I really have MS and it was a flair up, I dont' know. The doctor did not run any new titers. I wish he would have. He did run an Mri of the C Spine, but I do not have the results yet.

I do know, that for whatever reason- there was marked improvement overall on the anti-virals. I'm not one who ever questions whether or not I am having symptoms - if I am having symptoms they are not meak. lol
And having been such an active, outdoors person- any chance I get to get off that couch and participate, call me there. LOL

I do have the consistent lymph node swelling and pain under one armpit (it is always one area- so weird- guess there is where the Ebv lives in my body ;-)  )
and severe fatigue, joint pain, severe leg pain, memory & cognitive issues, muscle pain and weakness, muscle twitches/spasms.

All my problems began after the birth of a child also, and I had a few other factors in play. I wouldn't say mine has worsened each time, mine seems to be sort of the MS fashion - where my body reset at like 40% during the original phase, and then has periods of time where I am much worse - then they resolve. This is how it has happned for me if you would like to compare.

Such great information from Quix, I will have to save that. Give me buzz Quix if you would like.

Jazzy

[Quixotic1]

Well..........Epstein Barr Virus - EBV - is likely the most researched virus in history.  I did some quick reading on the effects of the acute infection and it CAN cause all of the symptoms that you mention.  The fatigue, the facial pain (likely Trigeminal neuralgia), optic neuritis, encephalitis (which can show up as cognitive difficulties), and symmetrical parasthesias (appearing similarly in both extremities at the same time.)

But, I will tell you, that in most of my reading and here on the forum that reactivated infections most typically result in severe fatigue, malaise, maybe some muscle pain.  A couple of these people have been treated with antivirals with good lowering of their symptoms as the levels came down.  Beyond that, no, I'm not aware of EBV causing major neurological meltdowns during all reactivations.  I don't know that it isn't possible.

In investigating the causes of mulitple sclerosis it looks like there will be a pool of causes, a group of which in the right order, triggers the inflammatory and immune damage that we know as MS.  Among these triggers are a stiking genetic susceptibility, racial predelictions for various forms of MS, ethnicity, a lack of Vitamin D or exposure to direct sunshine in the first 15 years of life, infection from one or more microorganisms,   It also appears that infection with one of the common human infections (the typical childhood diseases, measles, mumps, rubella, mono) later than usual in life may play a role.  EBV is the infectious organism with the most evidence found associating it with triggering MS.

EBV is a member of the Human herpes virus group.  Like all the herpes viruses it has a predilection for the nervous system and lives with our bodies for the rest of our lives after initial infection.  People who have persistently elevated EBV titers seem to have problems with handling the virus properly with their immune systems.  The virus seems to cause some "dysregulation" of the normal immune system that usually allows people to get over the virus and be done with it.

In the thousands of studies on the causes of multiple sclerosis, it was noted as early as 1971 that people with MS have a higher incidence of having EBV than the normal population and they tend to have higher antibody levels.  But, they have never found that EBV is THE cause of MS.  Rather, it seems to be one of many sequential triggers for the attack on the central nervous system.  It has the greatest amount of evidence for being involved in triggering MS.  Other infectious agents that have good data for being culprits include Human Herpes Virus # 6 ( this causes the childhood rashy illness called Roseola).  The last one which has good evidence for this is Clamydiae pneumonia.  (a note - one or two studies a decade ago implicated the spirochete that causes Lyme disease, but subsequent studies all over the world have not been able to reproduce this finding).

Okay, almost all people get infected by EBV during their lives.  The estimates range from 93% to as high as 98%.  For the great majority of people the infection is an unremarkable infection in early or mid-childhood.  However, some people have a more violent immune reaction to it and have the illness known as Infectious Mononucleosis.  A great deal of the symptoms of mono are from the marked immune reaction, the huge tonsils and lymph nodes, the muscle aches and the fatigue.  (In practice we treated people in severe pain from mono with steroids).  Also, it is unusual to see mono in the pre-adolescent years.  Both the history of having mono and having persistently elevated antibody titers appear to increase the risk of developing MS.

One way researchers have looked at this is through blood samples.   Several studies have looked back at blood samples frozen by labs.  One large study looked at about a 1000 people between early 1960's and early 1970's that they were able to trace down and find. They ran EBV titers on the frozen blood and matched these against people who later developed MS.  Approximately 95% of all the blood samples were positive for EBV.  100% of the people who developed MS were EBV postive.  When they crunched the numbers it appeared that those people "with the highest titers" in the frozen samples (I could not access this study for what the levels were of "highest titers) were 30 times more likely to develop MS than the people with lower titers.  A similar study was done in about 1988 with 83 people with MS and 166 without MS.  Again the  seropositivity in the ms group was 100% and that in the nonMS group was about 95% (statistically significant).  The MS group again had much higher titers on the earlier blood samples.

They have also looked at it another way.  It is unusual in MS to be negative for EBV antibodies.  However, looking at it in the opposite way, children with MS have a much higher than normal incidence of positive titers than their normal counterparts who haven't gotten EBV yet.  The data shows that the higher EBV titers can predate the onset of MS by more than a decade.  All studies that have looked at this have shown a marked increase in risk for developing MS in those people with markedly elevated EBV titers.

There are similar findings for two other diseases, both of which have much more direct evidence for being pure autimmune in nature.  These are Rheumatoid Arthritis and Systemic Lupus Erythematosis.

Because of the limit in posting size I'm going to post this now and then get to your symptoms without considering the EBV infection.

Quix

[TiredPT]

Thank you so much for the welcome and all the assistance that I see you are lovingly providing to all those in wonder . . . . . I saw you posted something to Birdie and will read to see if that answers my questions also.

[Quixotic1]

Hi, welcome to the forum.  You found the right place, even if I am partial to this group.  I am going to write a little blurb on the relationship between EBV and MS a little later.  Yes, there is one, but it is not fully understood.

I will also comment on the "progresive deficits" you speak of.  No, EBV will not do that to you over a long period of time.  Acutely it can, but I think you are talking about something else.

I'll try to write more later, maybe tomorrow.

Quix