Anybody have Epstein-Barr syndrome?

In My Humble Opinion
1

A co-worker (friend) of mine suffers from this condition and is looking for help dealing with this condition. My understanding of the condition is that it basically makes you unreasonably tired all of the time.

She took about a month off of work and has been back for about 2 months. She has only worked a few weeks without taking at least one day off. (Luckily we get more sick days as Vacation days. Hooray for unions!) The days she does work are often difficult to deal with.

Are there any Dopers who have had any experinece with this condition? Anybody who can offer any advice to her on how to deal with the difficulties this condition has brought into her life? Anybody who has had success?

Thanks.

2

Hello, my name is Rasa, and I have Epstein-Barr syndrome. (“Hi Rasa!”)

I was diagnosed with it about 2 years ago, and luckily it hasn’t affected my quality of life much since then. I had mono, and never seemed to get over it. A year later, they decided I had EB. Before the doctor figured out what was up was rough, as any time the slightest virus/bacteria/germ blew by, it hopped on board and stuck with me for a very, very long time. Some days, just getting out of bed was way too much for me to handle. I was in college at the time, and my grades and social life suffered; most people thought I was either lazy or anti-social, when in reality, I was so tired I wanted to cry half the time.

One of the least-mentioned byproducts of EB is depression. In my case, when I felt good, I’d be manic–I wouldn’t sleep, I’d be incredibly flighty and distracted and euphoric, and do generally ill-advised things. When I felt bad, I was the polar opposite. People don’t understand, and think that “it’s all in your head”, or that chronic fatigue is just a myth. Even my doctor couldn’t decide if I was bipolar (manic) or if I had EB. Heh, they eventually decided both.

Since then, I’ve learned to be more careful, try not to get too run down, and take better care of myself. I try to get enough sleep, eat well, and take my vitamins. I still take forever to recover from even the most minor cold, and I get really really tired sometimes, but it’s much more manageable now.

The best thing you can do for your friend is be there for him/her. I know when I was first dealing with this, most of my friends didn’t understand and used to tell me to “snap out of it”, and my professors thought I was lazy. People hear “chronic fatigue syndrome” and often think “yeah right”, so your friend might be going through the same things–depression, feeling useless, etc.

Just my $.02…

3

I have had this for over 15 years. Over the years it has been called Eptein-Barr syndrome, Chronic Fatigue Syndrome, and Fibromyalgia. I reached a point where I could barely get out of bed to go to the bathroom.

I recommend http://www.guaidoc.com

This tells how to use Guiafenesin, an inexpensive presciption medication, to treat this illness. It has done wonders for me. As soon as I finish this post, I’m going to drive myself to the post office. This is great progress for me, and I’m improving all the time.

As for what you can do for your friend right now, BELIEVE her. You would be surprised how many people don’t think this illness is real. Even doctors will dismiss patients with the statement, “You’re just depressed.” So be there for your friend, tell her you know this illness is real.

I hope you’ll check out the website I recommended. It is very different from other treatments you’ll find. The Dr. who discovered this treatment has a book for sale, but if you can’t afford it, all the info you need is on the website! Any Dr. can prescribe this medicine, and it is even available in a non-prescription form.

I’ll be happy to discuss this with you as much as you like. I wish you friend all the best.

4

Thanks for your replies. Luckily Colleen has a lot of people who do support and “believe” her, including a wonderul family. She just has bad days sometimes. She just doesn’t know anybody else who is going through something like this.

I do not know if she knows about Guiafenesin, but I’ll let her know. She asked me to start this thread to see how other people deal with the problem.

If either of you wish to discuss this with Colleen (she expressed an interest in corresponding), you can send me an email through my profile and I’ll forward it through to her.

Thanks.

5

I knew ther was a reason I liked you. Well, another one.
And in resposne to the op, support. Emotional support is the best htig you can give em.

6

I came down with both mono and EB around the same time. It was quite the killjoy, but I’ve pulled through. Still have lingering sleep-problems and intermittent depression (pretty good right now, but a year ago I was out of my mind). Your friend needs good medical care (which she appears to be getting) and good support from friends and family (whcih she also appears to have). Good luck to her!

jb

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I’d be happy to e-mail your friend. But I can’t figure out how to get your e-mail address. When I click on “Members” it says the list has been disabled.