Would like information on anyone who has or knows anything about this subject.

I know that this is caused by a form of mono. I checked it out because someone mentioned to me that I may possibly have this. I know that there are shots that you can get from your doctor which may help. Good luck!

Yes I had that virus a few months ago when I got glandular fever - I don't know much about the actual virus, but my symptoms were:

-tonsillitis
-swollen glands (neck & groin areas)
-cold & flu symptoms

then I developed a rash, had chronic fatique and had complications with my liver. It was full on for about a month, but I started feeling better after about 3 months, but I have not gained back my full energy levels. Hope this helps! :-)

By the way...I'm not sure if there are actually shots to help it. When I had it I was told that because it was a virus, you have to let it run its course, and that there is no present cure. But if there were shots - I would've loved to have known about them!!

[This message has been edited by badgurl69 (edited 06-07-2001).]

this sound familiar for me! I had glandular fever caused from the Ebstein bar virus, and also a heart , liver and milt infection and a light meningitis...
I healed out the infections itself, but I heard that the tiredness can come back always! I heard from a friend about a therapy which only nature doctors are doing!I also searched the internet about stuff, and i found info´s about this therapy !it is called " Nosoden-Thearpy"...the only thing which helps...
I started with it (every week 2 injections, for 10-12 weeks) and now I´m total recovered!
per earlier you start, per easier it is.

I know how bad you´re feeling, cause the outside world can´t imagine how to cope...the most don´t believe it at all...
and all the doc´s tell you you should be allright!
please check out if there ´s anyone competent nature doc close to you, or look up the internet for this therapy...
Í was really glad to hear about it...don´t waste time...

What is the diference on ebstein bar virus and epstein barr virus.
Thanks you odulier@hotmail.com

i got the virus... sorry dont know much more

I had mono in the spring of 2003, as I understand it epstein barr virus causes it. Epstein Barr is a human herpes virus. I found some info today, but I am not sure of the guide lines about posting links to other site. Here is a brief version. There was a conference on CFS and some research was or had been done that suggests that CFS and MS are caused by a viral infection of the brain. The virus is hard to detect because it prefers to live in the brain. Hope it helps, now I don`t know if I have CFS or MS, they took an MRI of my brain and it showed abnormalities that suggested a series of small strokes or MS. Now I have to go to a neuroligist to get his opinion and recommendations. Good luck.

i belive the ebv comes first and you get the mono after. once you are positive with ebv, it's for life, you will always be positive.
if you go to any search engine, and type in ebv, you can get all kinds of info on this virus.

Would like information on anyone who has or knows anything about this subject.

On 6/06/2003 - diagnosed w/Epstein Barr Syndrom @ 3.25 ISR along w/Labrynthitus @ 6.01 ref. value I am trying to deal with this confirmed revelation and am trying to acquire as much information, as I understand there is nothing the Doctors can really do to help! Thank you! roseej

i have epstein barr virus, i am 21 diagnosed at 18 and it is harmless, if you have had mono more than once, get checked for it, this means chronic mono adn means you basically cant fight off antibodies w your weakened immune system adn you are not supposed to drink alcohol. i had chronic fatigue(still do) and thats when they diagnosed me after i was in bed for 2 wks. 3 yrs later, still tired alot but i have not been sick since adn there is no meds for this (as far as i know)......but this virus stays w u in your blood permanently so get checked if you have any syptoms..good luck , also i didnt know there was epstein bar and epstein barr ...good luck stacey

They are the same, one has just been spelled wrong.

Hello,

Over 90% of the worldwide population develop EBV. It is contracted usually by a childhood illness. It is a common virus which most of us carry as "dormant". We all have little "things" in us, like certain fungus, bacteria, etc. that are harmless, until, as stated by the other poster, our immune system is compromised and then these harmless fungus, bacteria, viruses, etc. become "activated" and cause us to become ill. Most times our immune system can bounce back and fight these conditions off and we recover. Mono is contracted because of EBV. You get EBV, THEN you can get Mono.

I was recently dx'd with CFIDS and I researched it until my eyeballs popped out of my head, that's how I ran across EBV. I also saw that Mono was the most common infection caused by the EBV antibody. And yes, the EBV antibody remains in our system always, although it doesn't show up as positive unless your immune system isn't suppressing the antibody.

I was tested for EBV, found positive for past infection. Now, here in lies the difference. If caught early, EBV can be treated, tho this is not usually the case. Most times, a person will come down with the symptoms of Mono which hopefully through early testing, EBV pops up and is treated, then it never bothers you again. However, when a past infection is detected and you now are showing positive antibodies for EBV, means that you will test positive for EBV for many years. This is what my doc told me. It's similar to being a carrier of HIV and showing positive for the diseases, though you may never have the symptoms and never be sick from HIV. EBV carriers are similar. When EBV is active, it is passed to other's through saliva, hence: Mono. If you have EBV and it is NOT active, you don't pass it, that's the difference between being a carrier of EBV and being a carrier of HIV. Which would you rather have?

EBV is believed to be the cause of many conditions, like, MS, Lymphoma, Non-Hodgkins, Mono and CFIDS. However, most research connecting EBV to CFIDS is usually "non relative" to EBV being the cause of CFS, according to research and medical opinion. I believe different.

When EBV "reactivates" from a past infection, and you are symptomatic of one of the conditions it can cause, and EBV anti-bodies remain positive in your blood for many years, this is refered to as "chronic EBV". This means that you most likely have an autoimmune disorder which is not suppressing the EBV anti-bodies, therefore you are more likely to contract viral and bacterial infections.

I also have FM (since 2001) and it seems that medical opinion regarding FM and CFS are similar. No cure, no known cause, and the "type" of illness that these two conditions classify as are well debated! One of my Rheumies considered FM to be a miriad of symptoms, while CFS was, according to her, an Infectious Disease. My second Rheumy said CFS and FM overlapped. When the fatigue from FM crosses over to exhaustion and becomes "chronic" along with the other symptoms of CFS, then FM becomes CFS. Okay? Now, I'm on my third Rheumy, and she believes the two are separate, and should be treated as so, but it is tough to find the right combination to treat FM and or CFS. Could take a long time to find what's right for you as far as treatment goes. She doesn't concern herself so much with what causes either condition, she does admit tho, that EBV "may" cause CFS. She says it's more important to focus on treating the condition, knowing there is no cure, we can't do much about that fact, nor can we do much about the fact that we really don't know what causes either of these conditions. She wants to focus on a specific treatment for each individual. Which, for me, is better than what my other Rhuemies have believed. My first Rheumy treated all FM patients the same. And she did not treat CFS at all.

I can tell you this also, besides now having "chronic" EBV, I am being tested for MS, since I have been showing signs of THAT disease. I also have possible peripheal nerve damage, and am being tested for that by way of an EMG. I have multiple herniated and torn lower lumbar discs, which has lead to some nerve damage, which now has gone so far that a Neurologist told me that surgery will no longer help.

I believe, all of these chronic pain conditions are "feeding" off each other, only to magnify my FM and CFS symptoms. I also question the affect of exercising on CFS patients. I have been in PT recently and everytime I exercise or exert myself, I'm "sick" for the next couple of days. Before, when I just had FM, exercise actually did help me feel "better".

It's all frustrating isn't it? :) As for EBV, check it out as much as you can. Learn about it so that at least you know what it is exactly if you have it. Knowlegde is power, sometimes it's totally necessary when dealing with some medical proffessionals, unfortunately.

Here's wishing you a good spirit,
tk