EBV flare up

hi. i'm 21 years old and about a month ago my doctor found EBV in my bloodwork.
i asked her to do bloodwork because i was having, and still am having- low to high fevers almost every hour of the day for 4 months now. along with the fevers are aches, chills, hot sweats, fatigue, dizzyness. i really just feel like i was hit by a truck. these fevers are really taking everything out of me.

i don't understand exactly how i have EBV and why this flare up has been going on now everyday almost every hour for 4 months! i literally cannot do anything because i feel so horrible all the time. i had to stop working, and put my life on hold. all i want to do is work, pay bills, go back to college, make friends and go out and have fun like a normal 21 year old should.
on top of this i have a horrible heart problem and the surgery was unsuccessful (i also posted about that in the arrythmia forum under svt)...and dont get me started on the other health issues or life problems i have.

i'm 21. i am way too young to just be sitting in my room feeling like a truck hit me every other hour.

i was wondering if anybody could enlighten me on how exactly i got the EBV, i did not have mono and my bloodwork is completely fine except for the EBV.
i was also wondering how long all your EBV flare ups lasted and if you experienced the same fever/symptoms as i have, and if there is anything i can do or take to help these symptoms. thanks.

[pamzilla]

figured i would add this in-

i will feel fine then BOOM out of nowhere i'll get the fevers and the other symptoms i mentioned above. sometimes it will last a few minutes, other times it lasts up to a few hours. but it always comes back like clockwork like i said above..almost every other hour...for 4 months now.

i'm just so sickly feeling and depressed because this is taking so much out of me and seriously limiting everything i can do

[sporque]

6 months - 1 years is the recovery time line for mononucleosis.  You may not have mono now, but having high EBV antibody levels suggest you had it 4 months ago and it's now resolving.  Symptoms can persist long after your blood work comes back normal.  The best thing you can do is not "over do" anything..Rest lots and eat lots of food.  Things will get better month to month.

[9DodgeFan]

Hello, and welcome!  Sorry that you're having such a tough time with this!  I'll do my best to answer your questions based on my experiences and what I've learned, but please keep in mind I'm not a doctor.  Anyway...
Your symptoms sounds right in line with typical mono/EBV.  I'm kind of wondering, did you actually have the monospot test?  Without those results or the EBV titers results, it's difficult to differentiate between initial mono and EBV reactivation.
Assuming you never had mono, it's basically impossible to tell when you acquired EBV.  If you have ever kissed anyone (Don't worry, I won't ask!), that's the "typical" way of getting the virus.  It can also be spread by sharing food/drinks, or even by touching a contaminated surface and then putting your fingers in your nose/mouth/eyes.  Then once you have it, you have it for life.  I've heard that about 90% of people have it by age 30, and the only tests they have can show if it's a "new" infection or a reactivation.  I know it's something you would really like to know, but it's honestly not that important.  What matters is that you have it.  So with that said, what can be done?
First, I think you should find an infectious disease specialist.  They are much more knowledgeable in EBV than a typical doctor, and since your case seems to be "holding on", I would highly recommend that.  Other than that, the main thing you need to do is get LOTS of rest.  You sound like you've already taken some steps, such as cutting down on working, but apparently it's not enough.  This may sound hard to believe, but I basically had to put my entire life on hold when I had a mono relapse, and it still took a while to get over it.
Continued below....

[9DodgeFan]

...continued-
Unfortunately, I'm sure your heart condition and all you're going through with that is definitely not helping things.  I wish I could give advice on that aspect as well, but I don't have any knowledge whatsoever about it!  Anyway, I think if you're able to get ahead of one of these issues, you'll probably see the others start to improve as well.  I know that's how EBV worked for me; it seemed to kind of compound with other things to just really beat me down.  And try not to be too discouraged, but it may take a while.  If you browse around on this forum, you'll find plenty of other people who have had similar struggles.  Don't hesitate to ask any more questions!

[pamzilla]

thanks for your input.
i see my primary in 2 days and i will talk to her about seeing an infectious disease specialist.

same as you, my whole life is on hold right now and its been on hold for months. i literally can't do anything :(
i don't know how much more i can rest lol i honestly don't leave my house...thats how horrible i feel.
my doctor gave me a full blood test and the EBV showed up.. thats how i know i have it. its never shown up in previous blood tests, so i'm guessing its new.
and it ***** so much to know i'll have this for life and never know when it will go away or come back.

[pamzilla]

6 months to a year? ugh i hope i dont feel like this for that long..it's already been 4 months of the symptoms on and off every other hour.
i really hope they start getting better month to month..so far they haven't.
thanks for your input

[9DodgeFan]

There could be a couple reasons as to why EBV never showed up before on blood tests.  The first case, like you said, it could be a new infection... in which case, you actually DID have (and maybe still have) mono.  The second possibility is that you actually have had EBV for a while, but it was never really brought up because there wasn't any reason to bring it up (if you weren't sick at the time).  And yes, you will have the virus for life, but that puts you in the vast majority of people.  In some people it never causes any more issues, but in others certain triggers (stress, compromised immune system, etc.) can cause re-activation.  But I think once you get "ahead" of it, you will really start to see things improve.  Let us know how things are going; if I can help in any way, I will!