Mononucleosis Support Group

Hi Hope,

Have your Dr's checked for other diseases or viruses that can mimic as Mono??

In this article (http://www.intelihealth.com/IH/ihtIH/WSIHW000/9339/10351.html), it mentioned this, "HIV infection, hepatitis viruses and even the parasitic infection toxoplasmosis can mimic infectious mononucleosis."

Perhaps you should insist on being tested for some or all of the above. You are your own best advocate. You care far more about you than they do, no matter how good a Dr. you have.

I cannot imagine what you must feel being on your 4th round. My heart goes out to you.

If you are experiencing depression, which I cannot imagine that you are not, perhaps the Dr. can prescribe an anti depressant for you at least until you are through this all. I think you will notice a difference within 3 weeks after having started them should you decided to go that route.

I will pray for you today!

Karen,
A warm welcome and I can sympathize with you how your feeling somewhat. I can't imagine 4 rounds and my one round of 3 solid months in bed did it for me. Of course, I ended up having other medical issues after and it seemed like non stop surgeries or problems. I felt so alone and lost at times. Like felin, I believe we ARE our best advocate and I know I wouldn't have been helped if I had listened to the many Dr's who wanted to ignore what I was feeling. Hang in there and I too, am so glad we have this place to share.

Hugs!

Karen,
My son has had mono since Feb of this year - missed his entire season on the golf team and when he went back to school at the end of April he spent every extra moment making up chemistry labs, etc. He is tired all the time and doesn't want to do anything. He will be a senior in the fall and I'm so worried about him. We have planned college visits and I'm hoping this is over with soon. I feel so bad for you too. I've seen what it can do to a normal, active happy person and it's terrible! In my thoughts...

OMG Karen, I'm also in my fourth bout!!! I thought I was the freak of nature... it's great to meet someone else. My doctor actually agrees that it's possible, as apparently the Epstein-Barr virus can become "re-active" in 6% of people. She suggests probiotics 3x a day, which do seem to help. Also, I have a prescription for Provigil, which is a wakefulness agent-- I try not to take it every day, as I'm also on prozac and I hate the idea of being on too many meds, but it also seems to help.

How far apart have your episodes been? How long do they usually last? When was your first one?

Hi Felin, Redangel, Daltsmom, Anastasia!

Well, I'm off to Vanderbilt (kinda like a Mayo Clinic) next Wednesday, and I'm hoping maybe they can sort out all the weirdness. I've had just about every test my GP can think of by this point, so hopefully these specialists will have some new ideas. On June 9th, I'm also having my tonsils out - a few ENTs I've talked to seem to think it may be possible for mono to reside in the tonsils, resulting in the relapses I've been having.

Right now I'm on month 10 (!!!!!) of this round, and I've gotta say, at this point, the mental struggle is by far the hardest. I feel like I've lost a lot of my normal life and who I am - my hobbies and interests have had to go by the wayside just to get through the day. When I'm up and around, I'm seeing a therapist, which, while it doesn't offer any solutions to the physical, it helps me stay a little more balanced in the mental realm (which I usually depend on triathlon training to do for me, but hey, that's not so realistic right now).

My first round was about nine years ago (wow! time flies), when I was a junior in high school. It lasted about 6 months where I couldn't get out of bed . . . Daltsmom, I made it through school, through, with an arrangement with my teachers where I would go to my morning classes one day and my afternoon classes the next day - in effect, only going to half a day of school each day. I don't know if your son is up to even that, but it did allow me to pass all my classes at that point and got me through to the summer months where I could fully recover.

Anastasia, my next two rounds were about a year apart (fall 2002 and fall 2003), and I really thought I was done until I got hit SO hard this past August. I was in the hospital a lot this time around, and lots of spleen pain. I will check out the probiotics . . . I'll also post if I get any new info from the doctors at Vanderbilt or from my tonsilectomy (yikes) in the next few weeks.

Thanks everyone, for your encouragement and posts. It's a huge help to have some human contact and conversation, even if it's just via computer!!!

~Karen

Hi Karen,

I'm really interested to hear how your tests go at Vanderbilt... for you, and also selfishly for me! It seems we have a lot in common-- I had my tonsils out three years ago for the same reason, they said I had "chronic tonsilitis" which might have accounted for my tiredness. I'm sure your doctors are on it, but just make sure to take care of yourself. When I had my tonsils out they hadn't healed two weeks later (I was singing in a friend's wedding, what a story) and one night the stiches burst and my throat started bleeding. The Dr wasn't sure why I wasn't healing as fast as I should, and that was time #3 we found my mono had re-activated, which apparently slowed the healing process. Again, I'm sure you'll be fine, just be prepared that it might take a bit to heal.

I really wish you all the best and I hope they can find something to help you. I've heard rumours of trials using anti-viral drugs, have the Drs at Vanderbilt mentioned anything like that??