...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!
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....
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.
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