Epstein Barr Virus (EBV) Community
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This patient support community is for discussions relating to Epstein Barr Virus (EBV), chronic EBV, and infectious mononucleosis (mono).

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so ive been struggling with what my neurologist says is a flare of chroonic epstein barr. I tested positive with exposure in the last 8 months. I have been struggling because i keep having unbringing of symptoms, and i have been struggling with tons of anxiety from it. My doctor prescribes me Compazine for the nausea, He put me on Neurontin for my arms and legs constantly falling asleep, and it always feels like someones pulling my hair, so he wants me to try to neurontin, and he prescribed me ativan for the anxiety. Lately i havent been able to sleep, and i keep having heart palpitations, and suddenly stop breathing. I guess my question is, is epstein barr virus deadly, (as in can it affect numerous organs causing severe life threatening problems), and has anyone else suffered with numerous organs disfunctioning. (i have digestive  problems, and just recently lost 35 lbs, and am just now getting my appetite without having to take compazine.)., i was also just hospitalized for blood in stool, which they did a endoscopy, and didnt find anything, and i also had the flu so they kept me for a week. Im just having anxiety because i know i suffer from epstein barr, a vitamin D deficiency, and a creatine deficiency, and i have been tested extensively for things like lyme disease, and lupus, and have had no hits except the epstein barr, and my doctor says i am suffering from chronic fatigue because of it. Also, anyone else have positive ANA with epstein barr? Thanks so much for your answers!
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Avatar_f_tn
Hi Krissy820,

I'm so sorry to hear what you are going through. If someone has "Chronic Epstein Barr Virus" or "post viral syndrome", then that is pretty much a "Chronic Fatigue Syndrome / M.E." diagnosis. EBV is a nasty virus and high EBV titers are seen in many chronically ill patients.

I hope that you will check out our health pages, because we have a wealth of information on symptoms of CFS, tests that can help diagnose CFS (many other tests other than EBV testing), a video library of links to discussions with CFS experts and CFS treatments.

As far as your symptoms.... they are concerning and I'm not sure if you have Chronic Fatigue Syndrome. I can tell you though that CFS DOES affect every organ in our body.... but lab results don't reflect this (at least not that I'm aware of).  I can only tell you that I've never had the legs falling asleep sensation, the pulling hair sensation and/or stopped breathing. I have had heart palpitations, shortness of breath, digestive problems and weight loss. You might want to ask your specialist if you could try a strict gluten free diet for at least 2 weeks.

I do have a positive ANA result. Do you know what your titer is and what the pattern is ? (example: ANA titer: 1:640 -- speckled pattern). I am told that approximately 25% of CFS patients have a positive ANA result and "some" autoimmune problems.

I hope this helps.... if you could list your EBV results, your ANA results and other abnormal lab results.... that would be great. I do hope that you will consider checking out the second link and printing out the page to our "blood & diagnostic tests to help rule out CFS" and share that info with your physician and/or any other information that you think he or she would want to read.


http://www.medhelp.org/health_pages/Autoimmune/Increased-levels-of-EBV-antibodies-explained/show/648?cid=181 ---- Increased Levels of EBV Antibodies Explained

http://www.medhelp.org/health_pages/list?cid=39 ---- CFS Health Pages

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Avatar_f_tn
Krissy,

Do you have a lot of neurological symptoms? I have a lot of buzzing, tremors, random tingling and numbness. Also, has your neurologist done mris? I find that most people with EBV have flu like symptoms, but I have mostly neuro symtpoms.Do you have any of these symptoms?
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Avatar_m_tn
I to have had lots of neurological symptoms.  I have been battling for the last 8 months.  I have the tingling and numbness in hands and feet, hot flashes, etc.  The most concerning to me is the persistent oral thrush.  It is driving me crazy!  The first sign I had was a swollen prostate, which is very odd, can't wait to get over this stuff.  Let us know when you find a way to get better!
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Avatar_m_tn
yes i suffer from mostly neuro symptoms, such as hands and feet falling asleep. if you have this problem, ask your doc to put you on neurontin , it works great for me, but anyways, i notice that whenever i take my vitamin D, flinestone lol, and protein shake, i feel a million times better, even if i had a few drinks the night before. my doctor is also putting me on creatine for CFS, that the EBV had caused. i just hope these flare ups go away soon because they cause me such anxiety because i cant help thinking its going to attack my heart or brain or sumthin. i dunno, they need to find treatments for this asap/
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810264_tn?1239174497
hey man i to had blood in my stool has your doctor said anything about yeast overgrowth or candida? ebv isnt life threatening that i know of but it can make life difficult hang in there
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810264_tn?1239174497
oral thrush and swollen prostate can be tell tail signs of yeast overgrowth and candida plus doctors arent trained to diagnos or even look for this problem this affliction can be brought on by over use of antibiotics, stress, and environmental contaminates or a combinbation of all...
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1720676_tn?1309294127
How are you doing? I have the same simptoms as yours with sleepy members and blood stool and all stuff, but I don't have a doctor to help me with  this. Please tell me if you finded any resolution. Thank you
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Avatar_n_tn
I am so sorry to hear ya'lls awful history with EBV. I have been highly positive for a year now and they can't figure out what is going on with me. I have the heart palpitations and digestive problems. I also hurt all over. I am so tired of the unknown but feeling awful and no answers. Any help or suggestions? I also have the weakness and dizziness. It's very frustrating!
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