Epstein Barr Virus (EBV) Community
I have been sick for almost 8 months now with EBV
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I have been sick for almost 8 months now with EBV

In september I got so sick and tested posative for mono, I never even had the sore throat. After 3 months of not getting better I tested posative for epstein barr virus. It has now been almost 8 months now and I'm still sick. I just don't know what to do anymore. I have been to several doctors and had several test run like complete bloodwork,lupus,Ms, cat-scans, Mri's and everything has come back fine. I even had test for HIV and Hepatitus (hepatitis) C (both negative). All of the doctors act like the epstein barr virus doesen't even exist and that makes me worry that I have some kind of underlying condition. I just don't know what to do or where to go anymore. My symptoms arent as bad as the first 4 months but I still have extreme fatigue, low grade feaver off and on, Loss of appetite, light nausia, tingly face, sometimes dizzy, brain fog,. I am so fatigue I can't do normal everyday things like drive or grocery shop. I feel handicapped. Can the EBV actually really last this long? If so why do the doctors say no. If this was just CFS then why do I have feaver and nausia and loss of appetite? Every now and then I will have a good day but it always comes back. Any advice would be helpful! I just feel like the doctors just don't care. Oh yea I have lost 15 lbs due to loss of appetite and I really couldn't aford to loose any weight. This whole thing has me so scared and depressed!  I just want my life back. I feel like I'm just a shell of the person I used to be. Thanks for reading and sorry for the complaints. PS:this is my first time to post here
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Avatar_m_tn
I am right there with you except I have been dealing with it for three years now. I fully understand your frustration and the DR's yea they all suck if they do not know they just refer you to someone else who has no clue. On top of it all I have a condition (caused by this be it EBV or whatever it is) that is usually associated with HIV but tested negative 13 times so how is that for anxiety LOL
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Avatar_f_tn

Since you've had symptoms for over 6 months, it is time to talk to your physician about CFIDS (chronic fatigue immune dysfunction syndrome).

http://www.cdc.gov/ncidod/diseases/ebv.htm

http://www.cdc.gov/cfs/

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453276_tn?1249740038
My bloowork showed EBV too, I was so sick, blurred vision, could hardly walk confused disoriented. This all hit at one time out of the blue.  I was told by my Dr that EBV means that you have had Mono at one time.  Once you have Mono it lead to EBV which leads to depression/anxity, and chronic fatique.  One thing leads to another. I have researched this on line and it all says the same thing.  I told dr's I was not depressed, but I didn't realized that depression has all these physical symtoms (symptoms). Later on I actually got the depression like losing intersted in regular activities and hobbies.  I've been going to mental health for about 2 years. Have tried every med there is and ended back on effexor. It has alot of side effects one being weight gain. I am the unusual person that suffers more side effects.  Most people do really well on this drugs. You may want to try something natural first like St Johns warts on line or at GNC. If it works you can avoid the dangers and side effects of the acutal drugs. I will be on them the rest of my life.  My memory is shot, I fight to spell, I can hardly take care of my personal business. I lost my job after 5 yrs due to illness. My house is up for sale. I work from home but miss alot of work because I feel like **** or I'm so tired I'm in bed for weeks at a time. I've applied for Disability and been turned down, a lawyer has it now, waiting on a court date. Since the med's work great for most people, they don't understand why I need disability. It's a hard road and sometimes it takes a long time to find out which med is for you. If you don't feel like doing anything and have lost interest and are depressed get help NOW
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453276_tn?1249740038
EBV once having momo is in your bloodstream for life. It doesn't go away. Sorry I've been 7 yrs with it now along with everything else I meationed above.
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464237_tn?1315674393
Thanks for your response. I have also had bad reactions to medications like busperone,zoloft,paxil and I have xanax for the anxiety but I don't like to take it because it makes me even more tired and gives me bad dreams. I don't think that it is depression because I get constant low grade feavers. Also I still have so many interest and I wan't to do so many things but my body won't let me because I'm so tired and feel so sick and nausiated. I have lost so much weight. I will admit at times I can get depressed because I wan't my life back. Can being depressed cause feavers all of the time? Thanks so much for answering my post.
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453276_tn?1249740038
Estein Barr Virus IS NOT aids and has nothing to do with it!
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464237_tn?1315674393
I know it has nothing to do with aids where did that come from?
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465913_tn?1207530080
Hang in there, it will improve. It was 26 yrs ago when I was diagnosed with it, that time it took a little over a year to recover. LOTS of rest is very impt. as is water. You may consider ensure or something to help keep nutrients in you, your body needs them to heal. I also lost way too much weight, started drinking something like ensure - don't remember quite what it was and taking vitamins. It came back again 6 yrs later when I was 25, that time was really bad but I had been working 12-14 hour days, 6 days a week -  you can't ever do that with EBV.(Years ago they called it 'raggedy ann' disease - cuz you feel like a rag doll!)  And docs don't help so I went to a homeopathic doctor, he had me back to work full time in a year. Again, I was young, figured I could push myself and ended up with Chronic fatique and Fibromylagia (fibromyalgia) - kept going though, my brain decided I could overcome it. I had to stop working at the age of 36. Listen to your body, if you're tired, rest - don't push yourself. Let your body heal and try to get some kind of nutrition in you, I've been there, I know it's hard but you can get thru it. I'm 44 now, learned a lot from my mistakes, if you have a day you feel good - take it easy, just enjoy it - don't do things that will tire you, you'll heal quicker that way. If you can find a good, homeopathic doctor in your area - try it, I know it helped me when I was so weak I couldn't even dress myself. I manage now by keeping balance in my life, never overdo it, not even on those good days - although I'm really itching to cut down that dead tree in the backyard!!
I know you'll get better, try to stay positive - that's a big step in healing too :-)
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Avatar_f_tn
As soon as I read your post I knew I had to share some of my personal experience and knowledge of what has worked for me. Although I never have symptoms that last more than a week at a time and thats just if I get less that 8 hrs sleep.  #1 is water so important #2 light to moderate excersise at least once a week, and although you may not be up to it at first but believe me afterwards is when you feel the positive effects.  Yoga may also help. #3. dont eat fast foods or other foods that load your body with toxins.  Regular bowel movements also help detoxify the body. Also anything and everything else you can do to improve your immune system do it.  It's like fighting a war, you always have to keep your body one step ahead of the "bug" and after a while you start to feel the effects of the disease less an less. Pretty soon you're giving the bug a run for it's money and it will go dormant.
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Avatar_n_tn
I thought i have exactly the same symptom as yours except it didn't last more than a month. i first had it for 2 weeks and then it comes back ocassionally for 2 days. I had the same scare and started to change my life style. plenty of rest is 1 point but i'm still working full time cos i have a family to feed. next is to make sure you take some nutrient supplements or eat well balanced fresh foods. the 3rd point is regular exercise once a week min. lastly, on days that u feel good, make it better by doing something you fancy like hobby or catch up with friends etc. i am coping ok now though it comes back on n off.
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Avatar_f_tn
It is good that your hopeful, but I have been hopeful for September 2006 and just getting worse. I too have had postitive the EBV and CMV which they finally told me was Mononucleosis or kissing disease. After six months of getting worse and new symptoms I was told I probably had CFS chronic fatigue syndrome but only a specialist who  is working only with CFS could officially diagnose this but first I had to repeat all the tests again after one year which was WRONG. I went to the specialist at institut Ferran in Barcelona and was diagnosed with grade III-IV of Post Viral Chronic Fatigue syndrome.
I am still taking optivite B-12 shots every week which I suppose helps some. I take diazepam everynight as well for other symptoms which have developed as result like RLS. I take triptizol 25mg every night to help with the pain.
With every new symptom that develops you think what next? I have developed even an allergy from latex from my annual gyn visit. No more glass of wine to help relax due to the alcohol intolerance. I now know what is IBS.
I have learned that the best is listen to your body. Rest when you start to feel tired. I made the mistake of joining a gym last March 2007 to fight the ("I think you have CFS") so like cancer I wanted to fight it but it was the worst thing I could have done. The problem with this is I never feel un tired, just complete fatigue like I have jet lag with the first day of flu when you ache all over. That is just how it is. I have not felt good since August 2006. I never thought I would develop IBS because that only developed three months ago. Several times a month I have the swollen glands. I have to decline any dinner engagements I can´t last.
I am only officially diagnosed since Nov. 2007 but nothing really has changed. I bought the book Living with M.E. from Amazon and it explains it very well but we still do not have a pill for fatigue as for pain but when you have real pain the pills do not work so....
I try hard in the back of my mind to accept that my life is completly different now and I must accept it but it is impossible think I will never ski again or compete in swim competions as before or even have dinner parties let alone work again. It is a battle alone just getting most medical doctors to accept that it is a disease due to the bad name before, but look at it, Many illnesses and diseases do not have tests but we know that they are there like Autism, Asma, on and on. So many different symptoms and many times the doctors as soon as they hear I have been confirmed with PVCFS they just through their arms up and say well it is coming from that like the nuerologist for my dizzy spells and headaches.
Please go to someone who is specialist in your area on CFS or M.E.
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Avatar_f_tn
I can certainly relate to the posts from everyone who has been plagued with EBV symptoms. It is the worst thing that has happened to my health. I believe it has been the cause for so many things wrong with me.

I have seen sick since 2003. When I finally got test results for EBV I was so ill I had to leave work. 18 months later I still wasn't well enought to return to work. Just for clarificaton, I had mono when I was 19. I was hospitilized because I cold not keep down food or fluids. It is my understanding also that mono is caused by the EBV. Once you have contracted mono, the EBV lies dormant in your system. Unfortunately, it re-activated when I was 49 yo. I had been dealing with multiple, major stressors for severall years, working hard, and finally I just hit a brick wall. I don't understand the chemistry of it all, but I believe that this took a toll on me and the virus re-activated.

I can relate to nearly all of the symptoms people here have discussed except that the flulike symptoms were mild and not prevelant long. I was utterly exhausted. Everything was a struggle for me. I could barely get myself out of bed. I couldn't drive, cook, clean, stay awake for long during the day. Unable to sleep well at night even though I was exhausted. I felt like I was dragging weights around. My arms and legs felt like cement blocks. I had brain fog that was so embarrassing, I felt like a idiot. My muscles fatigued so easily even with little exertion. They burned as if I had been working out lifting weights at a gym.

My biggest concern now is that my muscles have suffered risidual effects in terms of the fatigue. Has this happened to anyone else where there muscles didn't recover?

My experience with doctor's has been that not much is known about EBV. Worse than that, no one seems too interested in it either. A shame really because nearly everyone has been exposed to the EBV which mean it lies dormant in their system. That means billions of us could have that virus activate at times of high stress. I suspect that this happens more frequently than we think without diagnosis's being made to identify this fact.

I was followed by a naturopathic physician who told me to leave work and rest or I wouldn't get well. I did that and still never regained my optimal health back. I loaded up on vits, minerals and amino acids that she recommended to boost a depleted system. I also lost weight...over 40lbs. I needed to loose weight, but I wasn't on a diet when this happened. I was just too fatigued to think about food. I also had thyroid antibodies at that time and was diagnosed with Hashimoto's disease.It took a while for my thyroid to get back in line, but it didn't make a difference with all those symptoms.

I don't know if EBV has any connection to Chronic Fatigue Syndrome or visa versa. Supposedly, CFS is a diagnosis of process of elimination. Doctor's can't find anything specific to point to your symptoms, so you end up with this catch all diagnosis. And then there are the docotrs who don't even believe that CFS exists. I suppose those patients have mental problems!!! Geeeez. It would not surprise me if someday it is determined that CFS is an autoimmune illness.

Anyway, interesting forum on EBV and I will continue to check in on it. If anyone has suffered muscle problems long after EBV I'd appreciate hearing form you.

Karen    
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Avatar_f_tn
hiya, i have sorta same problem, it all started on new years eve 2012, i was fine and bang on midnight i felt really sick with the shakes, woke up in the morning and the shakes had gone but nausea still there, i still have this now, i just dobt know what to do, im just an ordinary 15 year old girl but im soo scared to as what it is exactly? im hoping it will go, doctors cant seem to find out what it is, i have peptac acid medicine and it seems to work for a hlfew hours and soon returns,  any ideas on what it could be?
thanks
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