January 21, 2007 10:34pm CST
I was diagnosed with Ebstein Barr when I was only 19. I went through three solid months of not even being able to walk very well and sleeping 20 hours a day and having the flu due to my immune system crashing. It still effects me today. Anyone else have this horrible illness?
• United States
22 Jan 07
Yes both the nervous and immune system. It is not cureable although it can be active or dormat. But it still stays with you all your life. It's a rare form of mono that is only detected in a certain test with the blood. Anyone having problems with chronic fatique on top of getting sick very easily could have it. Many doctors don't even know about it. I had to research my symtoms on line at the time I was really sick and found out about it and went in to see the doctor and told him to test for ebstein barr and sure enough that is what it is. I have to work at home now because I get sick too easily if I work with the public, then it takes me 10 times longer to get better. There is a 20 point scale and I was only a 3 and it has really affected my life. If I happen to run myself down too much it can become active again and if you get up past 10 points it very well could make you so tired and weak you could be disabled. Also I have fibromyalgia so I have muscel spazems, and found out later that many doctors believe that there are people with fibromyalso have ebstein barr and just haven't been tested because not a lot of doctors know about this rare form of mono and don't know that it does not show up on a cotton swab test.