Chronic Epstein-Barr Support Group

My teen daughter was diagnosed with CEB and has been fighting it for three years now. My daughter struggled in the beginning to get a diagnosis and was put on many medications. After months of being sick she ended up in the emergency room and after sevsral days of coming home then returning to the E.R. she finally received her diagnosis of CEB. It has been a trying time and one of the most difficult things she has faced is being a teen and struggling with feeling tired.

We are currently searching for a Dr. that can help us with her many issues with CEB, but have yet to find that physician.

My daughter has been hosptialized three times where she has received everything from a bone marrow biopsy to a colonoscopy, to neurologists it has been frustrating. Once the dignosis was made it allowed us to put things in perspective and allowed us to deal with the symptoms as they arrive.

My comment to anyone that has CEB is to make sure you trust your gut feelings and listen to your own body. Stress seems to be a huge factor in my daughters own life with CEB and at 16 the Dr.'s will sometimes ask what stress does she have (teenagers do experience stress peer pressure, school work etc.) We have found in her life that the better she can deal with her stress the better her health is in dealing with the CEB.

To anyone dealing with CEB I wish you well!!!

I know what your daughter is going through. I was her age when I found out I had it. I have nightmare stories about how unhelpful the school was because I was out all the time. The more unhelpful the school was the more stress I had. Which made me even sicker. It went on all four years of school. My parents pulled me out after a teacher said I was fakeing the whole thing. After mom pulled me out in 6 months I was feeling better. It was the less stress the better I got. Not to mention that I was getting all the colds and everything on top of it. Mom got me a full time tutor and I graduated and went one to college. I know the biggest stress of it is not knowing whats wrong and not being able to cure it in a few days. Back in 2004 I was told I had Lymphoma. I am fine now.

I am now 28 and still dealing with CEBV. I just had my 5 "out break" this year. I have to say I have a great Doctor. He was read studies that Valterx helps. CEBV is a herpes virus. Make sence. He put me on it a month agao. Yesterday I went in and he up me to 2 times a day. I am willing to try anything. I also found that once a month b12 shots help. This may sound silly but When your daughter feels somewhat better try Yoga. It helped alot and still does. Clearing your head and strenghting your body. If she has alot of muscle aches it may help. Keep the muscles in shape. I hope your daughter feels better.

Hello Amy it was so nice to hear from you. Your scenario sounds like my daughters. I understand your story about school. Some just do not have any idea how sick you can be at times from this CEB. I had considered homeschool for my daughter as it seems the stress would be less and she would be more able to concentrate on getting better instead of getting in trouble from school.

I just recently spoke with my daughters school and explained her situation to her teachers which always seems to help.My daughter does not want to homeschool because of the socialization and interaction at school so we will just hang in there and see.

I have to ask you though was it not difficult to get through college with the stress and peer pressures (not to mention the CE? I suppose I woory about that as my daughter has one more year of high school and then into college and if she has trouble now I have to wonder about the "new stress" she will be a part of in college.

My daughter like you catches everything that is going around. Did people ever try to make you think it was a mind thing. My daughter has to deal with that at times some try to make her think sh is making this up. At 16 this makes her a bit crazy. She has ealt with fevers of 103-104 and they want to make her think she can just make this up.

I think with CEB you have to become somewhat thick skinned and just let this kind of thing roll right off of you, or it adds to the illness process.

I found a Dr. now for my daughter and she will see him next week. I will certainly ask about the treatment and see what his opinion is of this. Thank You so much for sharing that with me as it helps with my awareness.

I am a nurse of 19 years and have seen a dealt with many things but I have to say CEB was all new to me until my daughter was diagnosed with it.

Do you find that your episodes are less severe than previous? Do you find stress as the main contributor? How do you just deal with life when you spend so much time with illness?

I suggested yoga to my daughter so it is funny you mention that....I think having an outlet for the stress has to be a positive and that just goes for anyone in general so that was why I suggested it to her. I know she loves tap, jaz and ballet but has had a hard time staying in it because was sick , so I like you thought yoga may be just the right thing. Thank You so very much for sharing with me it means so much to me to speak with you as you have gone through it and understand. May you stay healthy !!!!

Shery,

College wasn't that bad for me. I went part time at night when classes were smaller. I started at a JR college. I worked part time and went to school part time.

My family still treats me as if it is in my head. The only people who understand is really my mom, dad and my boyfirend. But they went to every doc. with me. In school my teachers were the problem. New stress is going to make it harder to get better. Just tell your daughter to worry about today. Deal with things as they come. In her case it would be the best thing. Getting her all worried about the future and how this illness will effect her is going to be stressful. Its going to effect her the rest of her life. CEB is going to stay with her. Sometimes it will be like there is nothing wrong and other times it would be hell. Short term goals made it easier. Getting through the day is hard enough.

As far as asking your doc about these treatments. I am sure he is a good doc but bring the study in with you and all the other info in. Sometimes these docs haven't heard of the newest treatments or studies yet. If you have the name of the study and what was found during the study it helps your doc. If you would like e-mail me aj_babbitt@yahoo.com. I will send you the info to print up and take to your doc. A good doc. will look at the info read it and may even do more research on it for you and let you know. Each person is diffrent. Thats what I did and I had better luck with docotors. I keep mine informed of everything I find. He will also find new things and let me know what they are, side effect and how it can help. He will ask me if I want to try it. My doc and I are a team when it comes to this illness. I am on my 5th episode this year and this is the worst of them so far. I have had time when they latest 10 days or soor even months. Some worse than others. But from everything I have read as I get older now I will have them more often and they will be worse. I am at risk for even more problem not just because of CEB but also haveing chemo. EBv has been linked to lymphoma and many other things. I also say something about haveing to many "out breaks" in one year maybe a sign of something else that maybe effecting my immune system. My doctor has mentioned maybe something autoimmune. Here goes more test. But this requires more research before we start tessting. Good luck with your doc next week.

As far as getting through life with this. Just on crappy day at a time. Enjoy your "feeling good" days and there will be. I promise, your daughter will have good days. "What doesn't kill you will make you stronger but you will be supprised what you can live through." Aladen. LOL

Big hugs to you and your Daughter.