Discussions By Condition: Gastrointestinal conditions

Anyone have ebv or Chronic epstien barr virus

Posted In: Gastrointestinal conditions 13 Replies
  • Posted By: Anonymous
  • February 5, 2007
  • 06:48 PM

I got this about 4 years ago and it wont go and stay gone. It is like mono but it lasted 2 years strong and now pops its ugly head every week or month or after a few months and basically whenever it wants. It has affected my glands, digestion, menstrual cycle to include heat flashes at age 32 and 3 to 4 cycles per year the past 2 years which are nearly nonexistant then, to my central nervous system, corpal tunnel, energy level, emotions, joints, ringing in ears, headaches, room spinning and dizzyness, exhausted all the time, it attacks everything. I wanted to see if anyone has info on this?

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  • I got this about 4 years ago and it wont go and stay gone. It is like mono but it lasted 2 years strong and now pops its ugly head every week or month or after a few months and basically whenever it wants. It has affected my glands, digestion, menstrual cycle to include heat flashes at age 32 and 3 to 4 cycles per year the past 2 years which are nearly nonexistant then, to my central nervous system, corpal tunnel, energy level, emotions, joints, ringing in ears, headaches, room spinning and dizzyness, exhausted all the time, it attacks everything. I wanted to see if anyone has info on this?I was told I had EBV in 2005. I have had to stop working. I have made many changes in my diet and life routine which has helped to control the symptoms. I need to rest often still but have a little better stamina than I use to. I wish their was more out there for people like us. I feel like noone understands what this is like. What is your take on this? M
    Anonymous 42789 Replies Flag this Response
  • Hello, I have just been diagnosed with EBV but have had symptoms for about 7 years. I actually believe that I was misdiagnosed with Apendicitis when I was in the military in 2000. My white count was extremely high and I was having pains in my abdomen. They did not check anything else, but rushed me into surgery. I, after surgery complained of fatigue, ab. pains, headaches, and diarhea until I was told by military doctors "that if I kept complaining about the symptoms I would be discharged". So, I stopped complaining about the problems, got out of the military in 2004 and have had reoccuring symptoms since then. Well, about 3 weeks ago I started feeling very bad, severe fatigue, dizziness, headaches, muscle pains, etc and my antigen count was 1:700. Needless to say, this is the first time I have ever been tested for this and I was told that it is the highest reading that they have ever seen. Not sure what that means!I feel for both of you and I know where you are coming from. I feel that this is a newer problem that is causing more sever problems recently. I hope that studies can be done to figure out long term effects of the virus and what lies ahead for those who indeed have chronic EBV, such as us. I also would like to add that I have had to ask for a medical withdraw from classes at my college (graduating this year...ugh) and have been able to occasionally walk around my house. It lasts for about 10 steps or so and I become so tired that I become dizzy and have to sit down right then.Hope to hear any of your other problems and how you feel about the virus. Larry
    Anonymous 42789 Replies
    • September 28, 2007
    • 07:29 AM
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  • I have had a chronic sore throat, plus severe fatigue, weak legs, constant runny nose, and many other symptoms, since I caught a throat virus. I have an idea that this could be Epstein-Barr virus.More info here" http://chronicsorethroat.wordpress.com/
    Anonymous 42789 Replies
    • January 28, 2008
    • 02:15 AM
    • 0
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  • Hello, I have just been diagnosed with EBV but have had symptoms for about 7 years. I actually believe that I was misdiagnosed with Apendicitis when I was in the military in 2000. My white count was extremely high and I was having pains in my abdomen. They did not check anything else, but rushed me into surgery. I, after surgery complained of fatigue, ab. pains, headaches, and diarhea until I was told by military doctors "that if I kept complaining about the symptoms I would be discharged". So, I stopped complaining about the problems, got out of the military in 2004 and have had reoccuring symptoms since then. Well, about 3 weeks ago I started feeling very bad, severe fatigue, dizziness, headaches, muscle pains, etc and my antigen count was 1:700. Needless to say, this is the first time I have ever been tested for this and I was told that it is the highest reading that they have ever seen. Not sure what that means!I feel for both of you and I know where you are coming from. I feel that this is a newer problem that is causing more sever problems recently. I hope that studies can be done to figure out long term effects of the virus and what lies ahead for those who indeed have chronic EBV, such as us. I also would like to add that I have had to ask for a medical withdraw from classes at my college (graduating this year...ugh) and have been able to occasionally walk around my house. It lasts for about 10 steps or so and I become so tired that I become dizzy and have to sit down right then.Hope to hear any of your other problems and how you feel about the virus. LarryI am 26 years old and have been in and out of the hospital 3 times over the past two years with severe EBV symptoms such as enlarged liver,spleen and pancreas. My doc says it is chronic and I have now developed chronic fatigue as well. My doctor has me on anti virals to control symptoms, and they do help a little but it's been 2 years and I continue to have flare ups and sleep 12-14 hours a day. Can't keep a job but state disability ran out, any advice from anyones else who suffers from chronic EBV? I used to be very active and avid runner, now doing the dishes is exhausting. I work so hard at being healthy but this virus just wont go away.
    Anonymous 42789 Replies
    • December 16, 2009
    • 07:57 AM
    • 0
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  • I am just a two month shy of my 21st birthday and I was diagnosed with EBV just a few months ago. I had mononucleosis when I was 7 years old which caused my EBV. I started having symptoms of EBV when I was 14. I had extreme exhaustion and headaches. I was told that the reason for my symptoms was because I was depress, which was never the case. Last year I was misdiagnosed with chronic sinusitis but with further testing it was found that I have EBV. Because I am overweight and I have not maintained a healthy life style I have had a difficult time dealing with the EBV. However, I have been eating better and exercising daily. I have not seen much improvement in my symptoms. I am currently facing chronic fatigue, headaches, aches in my joints, exhaustion, and server sinus and ear infections that I get every month. Because of the sinus and ear infections I cannot maintain the energy I need. I plan to stick with my lifestyle changes and hope for the best.Good luck to everyone facing EBV.Thanks,Amber
    Anonymous 42789 Replies
    • January 27, 2010
    • 09:44 PM
    • 0
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  • I was just diagnosed with CEBV after nearly a decade of hunting for "the cause" of all my meducal problems. Recently, my liver became enlarged and I suffered 9 infections from november 2009 - february 2010. I can identify with being so fatigued that even the dishes feel like an overwhelming chore. I choose to keep as active as possible and refuse to quit my (thankfully) home-based job, but some days are better than others and I find myself cramming tons of tasks into short periods of time when I feel I actually have enough energy to do them. Then I'm back to being exhausted. My antibodies were 10.75 with a reference range of 0.00 - 0.99. I developed CEBV 10 years ago, likely encouraged to become chronic by already existing auto-immune disease and have suffered severe fatigue and many other medical complications ever since.
    Anonymous 42789 Replies Flag this Response
  • I too was diagnosed with EBD in 2006 after a month long episode. I was completely frustrated by this disease. I am a type A personality and yes as said in many writings, I fit the typical patient as I often burn the candle at both ends. The only thing that I have found to help reduce these episodes is keeping all the factors in my life balanced, sleep, nutrition, exercise and stress. I take part in two yoga asana sessions each day (morning and evening) and I pay attention to my stress load at work and home. If I allow any of these factors to get unbalanced, I see the symptoms of EBD surface. My physician has advised that I will likely never rid my body of this desease so all I can do in order to live a normal and productive life is maintain the balance. I wish you luck with your journey. SB
    Anonymous 42789 Replies Flag this Response
  • Hi , I am 21 years old and I recently (four months ago) was diagnoised with EBV. I had to do online courses instead of attending a normal campus. I am now working two part time jobs, barely getting through one of them. It is really hard. I had it four months ago and it went away for a few weeks. Now I am back with this same issuse. I am wondering if I should go to my doctor and ask for medical withdrawl from work because of how this is effecting me. I am overweight and need to begin my healthy dieting and resting up. Maybe this can hopefully change. I thought I was alone until I read this.We need a support website for all of us suffering from this. It is a virus that noone really pays attention to.
    Anonymous 42789 Replies Flag this Response
  • I was diagnosed in January with Chronic epstien barr virus after a lot of blood tests. Because my doctor suspected I had Candida also, I went on a Candida diet. This has eliminated the dizziness and most of the fatigue and constant sinus infections. I still am very sensitive to sound and will develop flu like symptoms (severe aches, sore throat and fatigue) whenever I overexert myself or have a large amount of stress. Therefore, I try to get consistent sleep, I don't do any more activities than I need to and I watch my diet like a hawk and take garlic and acidophilus supplements. I don't eat sugar, yeast or mushrooms and I limit my starches.
    Anonymous 42789 Replies
    • September 12, 2010
    • 02:49 PM
    • 0
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  • I was diagnosed in January with Chronic epstien barr virus after a lot of blood tests. Because my doctor suspected I had Candida also, I went on a Candida diet. This has eliminated the dizziness and most of the fatigue and constant sinus infections. I still am very sensitive to sound and will develop flu like symptoms (severe aches, sore throat and fatigue) whenever I overexert myself or have a large amount of stress. Therefore, I try to get consistent sleep, I don't do any more activities than I need to and I watch my diet like a hawk and take garlic and acidophilus supplements. I don't eat sugar, yeast or mushrooms and I limit my starches.Hi, I had been ill for nearly one year was constantly at my doctor who told me i had post-natal depression then it was just depression then it was flu, I was tested for everything CBC, Glucose, Thyroid, Hormones you name it I had it done it never showed anything. This went on for over a year till I could take no more whenever I got out of bed I felt like collapsing, once I had done some housework you would have thought I had ran a marathon I was totally exhausted with no energy, it took me to get my clothes on in the morning, constant headaches, sore throat, no energy, body aches and a 3yr old to look after.Went to a different doc he took a throat swap, got results back it showed positive for epstein-barr virus and cytomegalovirus and I had felt that I was wasting their time!!! That was 9 yrs ago since then had tonsillitis, streptococcus pneumoniae twice, I cannot seem to shake the feelings of the EBV, everytime I exert myself or do too much I am on the brink of collapsing and I get constant sore throats and flu symptoms. Went back to doc and was told you cannot get the virus twice, he took bloods that came back" occasional reactive lymphocytes".What does this mean???? And why do I feel ill all the time I am only 34 yrs old and should have loads of energy.Any help or feedback would be great. Thanksxx
    Anonymous 42789 Replies
    • September 21, 2010
    • 07:51 PM
    • 0
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  • I got this about 4 years ago and it wont go and stay gone. It is like mono but it lasted 2 years strong and now pops its ugly head every week or month or after a few months and basically whenever it wants. It has affected my glands, digestion, menstrual cycle to include heat flashes at age 32 and 3 to 4 cycles per year the past 2 years which are nearly nonexistant then, to my central nervous system, corpal tunnel, energy level, emotions, joints, ringing in ears, headaches, room spinning and dizzyness, exhausted all the time, it attacks everything. I wanted to see if anyone has info on this?I have it too, and something else that my doctor and I can't figure out. It's been 3 years for me. can't work, can't really do anything. I have no life. today I started my first does of steriods that I'm praying will help even a little bit so I can work a part time job. I have spent countless hours on the internet researching Chronic ebv.this website is alright. you may have seen it already tho.http://cebv.org/
    Anonymous 42789 Replies
    • November 6, 2010
    • 06:31 PM
    • 0
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  • Note that if you test positive for EBV, but the EBV in your body is in a latent state (it is inactive, with low titers), then it is unlikely to be EBV that is causing your various symptoms. If your EBV is inactive, your symptoms are probably due to another virus or bacterium.I caught a virus that created a whole bunch of mental and physical symptoms; it was an enterovirus, not EBV. But it caused gastrointestinal symptoms, depression, emotional changes, fatigue, tinnitus, joint pain, dizzyness, anhedonia, "foggy" mind, anxiety, weak legs, and many others.Here are the symptoms of my enterovirus: http://chronicsorethroat.wordpress.com/On the other hand, if you really do have chronic Epstein Barr virus (which you would if your EBV titers were high), try an alkalizing diet - this can really help curb the EBV infection.
    Anonymous 42789 Replies
    • November 9, 2010
    • 11:19 PM
    • 0
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  • I was also diagnosed with EBV. I was diagnosed with it in 2007 after having a long battle with mono for about a year and a half. It sucks so much that there isn't anything they can really do. I was told to just rest often, take things slowly, take vitamins, and eat well. But, as a teenager, those are not always the easiest thins to do. If I do not get enough sleep, I wake up the next day with swollen lymph nodes and I just want to sleep the whole day away. It has been about 2 months since I have had an attack, but I have received one today after not sleeping long enough and staying up too late. It had been awful in some ways to have to change my lifestyle because I cannot do some things that normal teenagers do. But, I have made those changes in my life and I am doing better for it. I am now just greatful that it isn't something much more life-threatening. So you are not alone. We are here for you.
    Anonymous 42789 Replies Flag this Response
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