Epstein Barr Virus (aka Mono) & MS???

[fibrotj]

I'm just wondering how many here have ever had the Epstein Barr Virus...aka "Mono?"   I have, although I'm not exactly sure when?  I was always so sick when I was younger, they probably misdiagnosed it at the time.  My 1st neuro had me tested for it, and I was positive.  Apparently, if you've ever had it, you carry the antibodies forever.  They can "trick" the T-cells into attacking your own immune system.  I think I quoted that right...as it's been awhile since I've read the article.  I've come across other articles since then, mentioning the link also.  Just thought it would be interesting to take a poll here.  We did so in another MS forum, and surprisingly, almost everyone in there has had EBV at one time in their life, or has tested positive for it.
~tj

[Mand125]

Hi there

I had glandular fever as a child, I was quite ill with it.
A couple of years ago I took part in a study about MS and Epstein Barr but I didn't hear anything further, I think it is still going on.

I don't know what my blood test showed re EBV

Mand

[fibrotj]

Sounds good to me Quix, however, let's be sure that everyone understands the difference between being positive for Epstein Barr Virus and Infectious Mono....starting with me!!  LOL!  I'm going to email my lab results to you to take a look at, OK?  (I don't want to post my personal info. in the forum because of confidentiality purposes.  Our topics often pop up in Google searches.)  Thanks!
~tj

[Quixotic1]

Well, I forgot that we can only choose one option.  I will think about which questions to include.

Any help here?

1) I have MS and had Mono prior to developing MS

2) I am undiagnosed and had Mono before my neuro symptoms began

3) I have MS and never had Mono

4) I am undiagnosed and never had Mono

In the comments please mention any other info about EBV and you.

How is that?  

I'll preceed the poll with the info on plain ole' EBV infections vs actual Mono

Any other ideas?

Quix

[fibrotj]

No, I don't mind at all Quix.  If you don't mind, I'll let you start it over, as I wasn't sure exactly how the "poll" worked, which is why I didn't ask the questions correctly in the first place.  Besides, you know much more about it than I do.  So, please do...re-do the poll for EBV/Mono....and thanks for all that great info.  I'll have to go back and read my lab reports again.  Maybe you can help me to figure them out...as I have no idea how to read the silly things!!  LOL!  ;)
~tj

[Quixotic1]

I havent read the posts yet, but this is an important fact to note.  96% of all Americans HAVE HAD the EB virus!  So asking about testing postive is not helpful info.

The critical association with MS appears to be with having the severe form of the infection called Infectious Mononucleosis or "Mono."

Mono is characterized by high fevers, severe throat pain with pus and very tender swollen lymph nodes.  It has a sever fatigue which may linger many months after the infection.  There is also usually a mild hepatitis and a swollen spleen as part of Mono.

Most people get the EBV infection as children when it is a mild, often not noticed infection.

So the better poll, would be to ask

1) I have tested positive for EBV

2) I had infectious mononucleosis ("Mono") before developing MS

3) I have EXTREMELY high titers for EBV (over 1000)

4) I test negative for EBV

5) I don't know

Let's start over with these questions.  No offense, but most people don't know the difference between positive antibodies (a prior EBV infection) and having had mono.

We can also talk about the meaning of persistent or recurrent high titers - hint - little is known.

Do you mind, TJ?

Quix

[Erin0313]

I had a very bad case of Mono when I was 7 years old. It made me sleep almost around the clock for more than 2 weeks. I had trouble even getting up to pee without help.

I was at a neuro who has published several studies/articles last week and that was a question that she asked me. She said that having mono as a CHILD is one of the 3 biggies for later developing MS. She didn't say that mono was the EB virus so I don't know about that but she did order a ton of tests that will be back in the next week or 2 so maybe that will be on there.

I worry about the whole mono link because my son also had it when he was around 7 or 8 and was almost as sick as I was a child. I guess that is strike one for him :(

Erin

[ChunkyMonkeysMommy]

I think Essdipity is right. I was told I tested positive for EBV, but had no idea that I had been sick because I always feel like ****, lol. My doc at the time (quack, quack) said that my levels as though I had had it withing the last six months (if I recall correctly). Anyway, based on that, came my first misdiagnosis of Chronic Fatigue Syndrome, because I also have PCOS and he said that they were linked as well. Thanks, doc! lol

[opie74]

I had the virus in 2001.  I had mono symptoms for about 6wks.

[essdipity]

I hope someone will correct this if I'm wrong, but I'm pretty sure that a distinction has to be made between the EB virus and mono. The virus is believed to cause mono, but it doesn't always. The huge majority of us carry the virus, but only a small minority get the disease. Mono is very debilitating and can take months to recover from, so it would be a rarity to get it and not go to the doctor for diagnosis and treatment. It isn't like the typical thing that can make us quite sick but is gone in a week or so.

Way back when, mono was called the kissing disease because it was thought to be transmitted by kissing. Not true, I don't think. But it was often found in adolescents and young adults. As I recall, mono is characterized by low grade fever and swollen lymph nodes, among other symptoms.

A blood test for EBV antibodies can show anything from next to none to a  very high level. I hope Quix will comment on what conclusions can be drawn from this and what diseases are associated with a high level. I think chronic fatigue syndrome is one.

ess

[fibrotj]

Sorry, that last question just read:

Positive for EBV

[uk2]

Yes when i was twenty now 33 had it on and off for a year ( mono is EB yeah) which cause gladular fever which i had.

Had two more minor bouts when 23/24 not suffered since but heard like the herpes virus it stays in your system and hides.

sam

[Trace420]

I was tested for it in the set of blood tests I just recently had. Negative.

Then again, I don't have a diagnosis of MS. Negative brain MRI (no lesions at all), and still a month away from my first appointment with a neurologist.

I read somewhere that as many as 95% of people in my age group have had it, though - so it's almost weird that I haven't. I guess my point is, though, that with the incidence of it that high, it might look there was a link with it and other conditions whether there was or not.

[HVAC]

Ever tested for EBV...YES
Positive or for EBV
Been battling it since they started testing me for MS two years ago