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.