Hi rscott, Erin sent me your way from the arthritis forum.
In Feb 2003 I came down with an acute case of mononucliosis caused by EBV. I had been dx w/mono when I was 15 - typically you should only get it once in your life, but lucky me got it twice. Mono apparently can be caused by either EBV or the cytomegalo (sp?) virus - and if you're lucky enough to get it twice - the doc said that would be the reason why. One doctor told me many doctors misread the test results due to the way the readings are - I have no idea if that is really true.
But, I digress....I haven't researched EBV since I had it, but from what I did find was that there are NO answers when it comes to EBV. If you do a google search on it you'll find info contradicting itself all over the place....so, I guess what it comes down to is how YOUR body handles EBV and if you have any other underlying causes that may be making you feel like you are not getting better. You will see some people say, you get it, you get over it, it's gone. Other people say it's there for life and you will always have to be careful. You'll find info stating that if you DO NOT take care of yourself when you have it, it will drag on and on. Some say very strict dieting will be your cure all.
I think there has been studies done linking EBV to CFS and you'll probably find that on the web as well. I should probably do the reasearch myself and look at these links the other have posted.
If you have active EBV I would:
1. get time to take care of yourself - I was down and out for over 7 months and then had a pretty decent relapse by month 9 - my health and fatigue has been an uphill battle ever since.
2. get tested to make sure you don't have anything else causing additional problems - Because of my other issues with arthritis and autoimmune issues, it's anyone's guess what the culprit is for my situation. I had liver issues with Mono and then again this past year - they told me mono induced hepatitis disappears when the mono goes, so I don't know what to blame this time around for sure.....when my liver enzymes elevated again last december, I felt exatly like I did w/mono - unable to stay awake among other things.
3. look in to the various articles you can find about it and become as knowledgable as you can. though there are no drugs (that I know of) that can "cure" this, some people DO swear by certain types of eating habits that have helped them feel much better. It could be a bunch of hooey, I don't know.
4. know that it will/can take a long time to get over it you need to be patient. It takes so little to tire out when your sick w/this. My relapse was brought on by very little - so, take it easy, take it slow.
5. Find yourself an infectious disease doctor, oncologist, or whichever doctor is more familiar w/this type of disease rather than dealing w/just your PCP at least for a consultation and evaluation visit. I was dx by infectious disease when admitted to the hospital in 2003 - mono had caused the liver to swell and enzymes to skyrocket, my spleen was enlarging, and I was completely dehydrated. However, I wasn't treated by him beyond the hospital stay...so, I don't know who to recommend for sure.
I'm not sure if this was any help to you...I hope it was something...I am sorry to hear you are going through this...unfortunately, I know exactly what you are going through! I hope you feel better soon, take it one day at a time, and be patient. It's hard to have to work around something like this not know what your body suddenly can and cannot do and finding that walking to the mailbox and back is suddenly means for a very long afternoon nap.
Post Edited (CaMama) : 9/18/2005 10:02:04 PM (GMT-6)
Its not the epstein barr keeping u sick unless its active now, if they have done a test for past infection then thats a past infection and its not whats keeping you poorly now, i've been told the same massively high for EBV but thats in the past they did a test on it that people that feel normal have massively high for EBV aswell.
Once you are infected with a virus - any virus, not just EBV - you will always have some viral particles lurking in your body, waiting for the chance to get reproducing again. You can take that to the bank, inscribe it on stone, write it on the moon - no virologist will disagree. The body's immune system keeps the numbers down - white blood cells that have learned to recognise EBV are always patrolling, and it is these antibodies that the tests for EBV actually count.
My guess is, ( and this is just what I've heard mooted elsewhere, I have no idea how accurate it is) that the test results can actually mean more than one thing, if they come back abnormally high or low. For example, if the antibodies are busy beating off an EBV attack very effectively, you may feel well enough, but have so many spare antibodies floating around that it seems like you should be dying. What may in fact be happening is simply that something (not neccessarily the virus) has triggered that immune response. It is widely believed that autoimmune diseases may well start off when the immune system starts to mount an aggressive response to innocuous substances that in some way resemble some kind of pathogen. Alternatively, it may be that the immunoassay test does not recognise antibodies that are latched onto viral particles - so your immune system may be fighting the mother of all battles, you feel lousy, and yet the numbers come back as low !
Just to confuse matters, CFS sufferers may actually have a problem whereby whatever causes their fatigue also gives them the equivalent of an immunological "broken arm"; so no antibodies may not mean no active viral load, or many antobodies may not mean an effective response. That may well be a major part of the CFS puzzle. But the broken arm idea is a theory that the jury is definitely still out on.
So, you could have EBV and not get CFS, then without the handicap of an ineffective immune response you never get ill with EBV again. Or you could get EBV and recover, but develop CFS and always thereafter have to worry about overdoing things lest you suffer a relapse. (I know former EBV sufferers who have this problem.)
If you're not confused yet, you're just not paying attention. Clear as mud, eh.
My experience is, the people who state definitively that you cannot get it twice are the people who have only had it once....denial, anyone ?
It's a tricky puzzle, that is for sure - all these autoimmune issues are! They are so interlocking it can be tough to figure out which came first and where the cycle can be broken, if at all.
The doctor who said many of his collegues misread the test results said that there were variations on the reading - having in your system, having it active, etc.
I was told that most people (I think 80%ish) carry the EBV virus. You can get it as a toddler (apparently a high percentage of people contract EBV between the age 2-5 as a flu) or older as mononucliosis. (Technically, EBV causes Mono, not the other way around.) The intesities of it vary - as with any virus. The virus comes and then is supposedly just living and hanging out in your throat and periodically becoming active and though you are not sick, you are contagious through your saliva (a cough, a sneeze, a kiss.) But, as snohare said - those who say it doesn't affect you more than once haven't had it more than once!
Soooo, I guess because THEY say 80% of us are walking around with the virus periodically affecting others, and the bulk of the population is NOT in bed with mono per se, THEY assume you only are affected by this virus once?
In my case, I just cannot be sure what part, if any, EBV is playing in my life now. I've had arthritis since I was a child. My autoimmune problems tripled during my 2nd pregnancy 4 1/2 years ago, and I had mono 2 years after that. . . since then, I'm typically "not well." Needless to say, fatigue is a big part of my life and always has been.
A "chocolate cyst", eh ? I always knew that women had to have an organ devoted specifically to that food product...but what's its' Sunday name, I've never heard of it ?
Who's Mr Scott ? ( Note to Trekkies; I already know about that Mr Scott.)
Well, I'm SO glad to hear you found a doctor who gave you some answers! THat is a rare find. I hope these meds help put you on the mend asap.
Do you think this was contracted from snorkeling in New Orleans? Wow...when I was 15 I was my family when to Carson Nevada and they all got ice cream, I was so hot I just wanted a glass of ice water - BIG mistake. My abdomen fought a viscious war for a long time because of it! I contracted the parasite ghiardia (sp?) and almost failed 9th grade because I was out for so long before they figured out what was wrong with me.
Feel better soon! I wish you good health asap. It sounds like you've had more than your fair share of illness and deserve to get on the road to health.
Post Edited (KKeen) : 9/29/2005 7:34:02 PM (GMT-6)
My daughter has been ill with what i think is the epstein-barr virus.....going on now for 4 months. its reoccuring...again. i found this site to share with everyone:
we are also on a regimen of antiviral supplements.
hope this will be helpful to someone.
*Please refer to forum rules before posting links* Rule #4
Post Edited By Moderator (Foreign) : 1/5/2006 7:08:38 PM (GMT-7)
get yourself to another doctor.
You probably have mono and need rest, etc. Often the severe symptoms of mono only last between 2-6 weeks - but you should know if that is what you have and they should make sure it hasn't/doesn't affect your liver. It can take many many months before you feel better completely.
I had ebv when I was 18. I was actually hospitalized for a week in ICU with a nurse at my side 24/7. My throat looked like there was a football stuck in it, and my liver and splene were protruding from my stomach. It was the most horrible thing I ever could have imagined. I would not wish it on my worst enemy.
I have never been the same. Lived every day of 14 years with chronic fatique. I had read those articles about CFS and ebv, and wondered if I had CFS, but last February I was diagnosed with Narcolepsy. I do not know if the Narcolepsy is a result of th ebv, but I cannot begin to tell you how nice it felt to know that I was not a hypoconriac! My mother was convinced it was all in my head and that I was just lazy.
Wow, and I thought my experience in '03 was bad! I had Mono twice, once in 86 and the other in 03.....we can only assume that the first pass was thru cytomegalo virus and not ebv.
There is controversy out there that once you have EBV you don't get rid of it....good luck.**