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I CAN'T BELIEVE



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01/17/2008 07:21
savedbygrace
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HOW EPSTEIN BARR IS BECOMMING MORE WIDESPREAD. AND HOW MORE INFO IS COMMING OUT ABOUT IT.

BACK WHEN I WAS AGE 25 I BELIVE IT WAS AND NOW I AM 53. WHEN I WAS REST TED FOR IT THEY HAD TO SEND MY BLOOD WORK TO UCLA CAUSE THEY KNEW NOTHING ABOUT IT THEM. I WAS TOLD I WAS THE EIGTH PERSON IN THE WHOLE US OR A TO HAVE BEEN DIAGNOSED WITH IT.

AND NOW IT JUST AMAZES ME THE AMOUNT OF PEOLE THAT HAVE BEEN DIAGNOSED WITH IT.

THE ONLY THING I DON'T GET IS WHEN I WAS DIAGNOSED WITH IT, IS THAT IT HAS NOTHING TO DO WITH PAIN, AND BOY WAS I IN EXCRUTIATING PAIN FROM HEAD TO TOE, I COULDN;T EVEN GET UP OUT OF BED. I WAS BED BOUND FOR SIXTH MONTHS. THANK GOD WAS LIVING WITH PARENTS THEN, MY SON AND MY EXHUSBAND. AND WHEN HE WENT TO WORK AND ON THE VERY FEW AMOUNTS OF DAYS THAT HE WAS HOME WOULD KEEP AN EYE ON OUR SON. HE WAS 4 AT THE TIME.BUT WHEN HE WAS AT WORK I WAS LUCKY ENOUGH TO HAVE MY PARENTS TO HELP ME WITH OUR SON.

WELL HOPE TO HEAR FROM Y'ALL ON YOUR TORIES ABOUT THIS DEILITATING ILLNESS.

TRISH

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01/17/2008 08:38
bisja
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Hi I have been fighting the Epstein Barr virus for 16 months and I am 54, rotten stuff. I found out in Aug. 2006 also have Lyme. So am fighting both the igm of the virus finally went negative and am hoping it stays that way.
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02/19/2008 14:59
eef05b
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I was diagnosed with Epstein-Barr when I was 19. It was only a few months ago but I have been sick for a year. It has been the most frusterating and challenging year of my life but I have learned a lot. I am a junior in college and it is very challenging to be a student with a disease like this. Did you guys graduate college while you were fighting Epstein Barr?

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02/19/2008 16:45
bisja
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Nope is all I can do to do dishes and take care of my handicap son.
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02/19/2008 19:43
eef05b
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I'm so sorry to hear that. How old is your son? What is wrong with him? Sounds like you have a lot on your shoulders right now. How long have you been sick?
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02/19/2008 20:07
bisja
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hmmmmmmm 17 months now I have EBV and Lyme. My son is 26 he has cerebal palsy and autisim he also had the virus along with my husband too but they are better my son still has some bad days but mostly good. Tell me what are your symptoms you have been dealing with?
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02/19/2008 20:18
eef05b
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Wow, you must be such a strong woman. I have gotten to a point where my symptoms are more controlled than they used to be but I feel like I have completely lost myself. I used to be very social. I loved dancing and groups of people but I get very anxious when I am with people now. Some days I feel like I am in a fog and I can't get out. I cry at least twice a week, I was never emotional before I was sick but I think it is healthy to be in tune with your emotions. I feel the worst in the morning. Some mornings I cannot get myself out of bed, but most mornings I manage if I get 10 or more hours of sleep.

I feel socially awkward in a lot of situations. I cannot concentrate very easily. Sometimes I am afraid to drive because I get so distracted and I feel like I am in a daze. This scares me.

I have trouble with normal tasks but especially laundry.

I also have scoliosis and a great deal of back pain, which sleep helps with immensely.

I have trouble sleeping too on a lot of nights.

I have also noticed that my memory is worse and my perceptions are off. I will get angry with people that I shouldn't get angry with.

What are your symptoms? Is your husband healed?



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02/20/2008 03:18
bisja
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My husband is doing good now except he catches colds and flus easy which he never did before. I have alot of sinus problems lots of back pain jaws knotted I get exhausted very easy and spend more time down then up. I also have trouble sleeping and if I get 5 or 6 hours straight I think a miracle has happened. My problem is do not know what is EBV or Lyme but I talk to alot of EBV people who have the same symptoms. Seems like there are alot of symptoms. What do you do for pain and sleep? Do you take anything?
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02/20/2008 15:49
eef05b
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I had a lot of trouble sleeping a few months ago. I do better if I put myself onto a strict schedule, but there are no guarantees and definately no predictibility. I take a supplement called min chex from Standard Processing. It has helped me a lot. I took melatonin for a few weeks and that also helped me but it will only work for a few weeks. The Min Chex is really what has saved me. I also try not to watch TV within an hour before I go to bed, and I have been trying to drink hot tea at night because it is so soothing. Sleeping is a battle though. I am so sorry you have trouble. I know how miserable that can be.

I don't handle pain killers very well. I was on codeine for about a month last year and It was terrible. I hope i never have to take that stuff again. Sometimes I take tylenol or ib profen for the pain but if I can sleep i have found that my pain significantly decreases. It is hard though. A lot of days i feel like the pain is the reason for my exhaustion. I also have trouble with my jaw. I see a chiropractor occasionally and that helps some with pain and with my jaw. Do you have a lot of neck and shoulder stiffness? I ALWAYS have knots at the tops of my shoulders and the top of my neck.

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02/20/2008 19:22
bisja
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I have alot of jaw pain and neck and shoulder pain and low back.
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