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Epstein Barr Virus (EBV) Message Board
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Old 01-08-2006, 02:17 PM   #1
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Mono/Epstein Barr

I recently tested positive for epstein barr, my doc thinks I had mono and now I'm dealing with the epstein barr virus. I did not know I had mono because my symptoms were not bad, I brushed them off and did everything as if I normally would. I had alot of anxiety about what was wrong with me once I start feeling really sick, which was about 2 weeks ago... one day I woke up and had sensitivity to light, fatigue, and random aches and pains. I got panic attacks while waiting for the blood test results, it was a really rough time. Now that I know I have epstein barr... I'm still having a rough time. I felt like I was starting to get better and then one night when I was trying to sleep all of a sudden I felt like I couldn't breathe. I went straight to the ER... I was breathing, but I had the sensation that the air was going no where. I guess I should also say 2 nights before this I woke up in a panic. I feel like I stop breathing when I fall asleep... but the ER docs told me it was probaby my nerves along with my chest feeling heavy from the fatigue. They did x-rays, the test that checks for ashma, and checked my pulse oxygen level (which was 100/100). My chest still feels really heavy and I have such a hard time falling asleep. They gave me medicine to calm my nerves and take the edge off but its a small dosage and I still have problems sleeping. I feel like I'm battling with myself. I know I need sleep but I cant or don't want to. I also have a weird sensation on my left side under my ribs... the ER doc also said my spleen might be enlarged but the discomfort seems to be getting worse. I hate being cooped up in the house, my family doesn't understand how depressed I am about this. I feel like I have no one to turn to. My boyfriend and his family are very understanding and caring but I can't expect my boyfriend to be able to be there for me 24-7. He has work and his own agenda. My parents just keep telling me its mono and that I'll get over it. And I understand that But it could take months, and i just can't take it anymore. Does anyone have any advice? I'm sorry this was kind of a rant... but I just feel like this thing is killing me, and I needed someone to talk to. Thanks.

 
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Old 01-08-2006, 04:46 PM   #2
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Re: Mono/Epstein Barr

Hiya Sweetpea.

I have Mono and active EBV. You wont die from this. All you need to do is sleep when you feel tired, drink and eat healthily and perhaps taking vitamins will help you. Some people with EBV are fine after they take vitamins. It might be worth a try taking these if it will help you to feel better.

EBV can cause your spleen to be enlarged but its usually in cases of active MONO where the spleen in enlarged. Just dont lift anything heavy as if the spleen is enlarged, it will cause you more pain.

Feeling exhaused, tired, experiencing hot flushes, breathing problems, stiffness in joints is ALL part of EBV and MONO. MONO is worse than EBV because EBV is a predessesor to MONO. However, one good thing here...if your doctor thinks you had MONO and the MONO test was negative this time, it means your body is already fighting this off hun so you should be better in a few weeks.

MONO usually sticks around for 3 months but in some people with weak immune systems it sticks around longer. EBV is always there but its only active when you first have it (like you have it now). However, EBV can flare up when under stress.

Sleep it off and take care of yourself. You have nothing to worry about. But you could ask your doctor for another test for MONO in 2 months time to see if you have the onset of MONO now. If you have onset of MONO it wont be picked up in blood test for 7 weeks. Also get tested for Lymes Disease as this can happen after EBV sometimes.

 
Old 01-08-2006, 05:21 PM   #3
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Re: Mono/Epstein Barr

Hey thanks for the reply. would it also cause a feeling of numbness in limbs?

I did get tested for lyme disease... it came back negative. They tested me for alot of things when I first got sick.

The feelings of weakness and numbness scare me I'm afraid I wont be able to move wheN i wake up tomorrow... Thank you for taking the time to type that all up.

Last edited by Sweetpea33771; 01-08-2006 at 05:37 PM.

 
Old 01-08-2006, 06:07 PM   #4
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kehorner HB Userkehorner HB Userkehorner HB Userkehorner HB Userkehorner HB Userkehorner HB User
Re: Mono/Epstein Barr

Has the weakness and numbness come on suddenly? You might look into Guillan-Barre syndrome, which can sometimes be associated with Epstein Barr virus.

 
Old 01-08-2006, 06:36 PM   #5
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Joez HB User
Re: Mono/Epstein Barr

I had mono too. and I felt very much similar to what u are feeling and the feeling does go away. Mono exists in a large number of people and it can be spread by saliva which is how I think I got it, from kissing. the good news is once u get the virus, u can't get it again and it can't kill u although u should avoid contact sports for some time. the tiredness does go away. some things which may help include drinking fluids, try juicing vegetables( I use the jacklalane juicer), and maybe a light box especially in the winter when sunlight exposure is less. also, don't forget to laugh, don't forget to pray. they both have helped me. I purchased this cd called laugh tracks. u can but it on the internet and it about 30 minutes of pure laughter which can energize ur body. try those things. good luck with everything.

 
Old 01-08-2006, 06:53 PM   #6
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Re: Mono/Epstein Barr

Thanks. You know I thought I was getting better and than it got worse. I've already been this way for about 2 weeks. I feel really weak right now, like my body is melting. I hate it so much! lol I'm a social person who likes to go out and now I'm stuck in the house. I've tried to go out but I usually end up getting tired and I usually respond by getting upset due to the fact I hate feeling that way. I have no clue where I got mono... probably college. My boyfriend didn't have it or anything, and I wasnt kissin anyone else lolol.. so I'm not sure.

 
Old 01-12-2006, 02:20 PM   #7
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Re: Mono/Epstein Barr

hello again, I've been feeling alittle better lately... my doctor said I am in the "recovery" stage. So that's good. But I've been feeling weird lately. At night I am so discomforted. My chest feels heavy and I feel like I can't breathe out my nose even though it is not blocked up. My doctor said it could be from my lymph nodes being engorged. She put me on a 6 day treatment of predisone to help with the inflammation. (I honestly don't trust her and think something else might be wrong... but that's just me being a worry-wart) I also posted ealier (I think) that I was to the ER and they did a bunch of tests. My body just feels numb, I can feel hot, cold, and pain tho... My feet are sticky and sweaty even tho they are cold. I was just wandering if anyone else who had mono or was recovering from mono had similar symptoms... My arms also ache where they meet my body... When I was at the ER a week ago they said my body was getting enough oxygen, I just find it odd I feel this way. And one other thing, I feel a knot in my side, and my doctor said it could be my spleen enlarged and I just feel it more because I'm so skinny. But yet, she gave me a follow up appointment 4 months from now. I really need to find a new doctor. I just need the peace of mind that this chest feeling is from the mono. I also still have my light sensitvity. It makes me mad because a couple days ago when I was on the phone with the nurse she was telling me that the pain in my side and chest heavyness was from anxiety. And yes, i'll admit I have gotten panic attacks before... but they had me believing that my chest felt this way all the time because of me being upset w/ anxiety! It was so frustrating thinking I was causing these symptoms. Then when I went in for my appointment she says nothing about anxiety. Once again thank you for any responses you give, I really appreciate it.

 
Old 03-07-2006, 03:20 PM   #8
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Re: Mono/Epstein Barr

Hello everybody who is suffering from EBV!
I am frustraded and angry. I barely don't know where to start, to talk about the HUGE subject EBV.
When I read some of the postings here, my forehead gets many wrinkles because of being angry. I guess, some people, who talk about EBV or make suggestions regarding "What to do when having EBV." or "What helps best." they have no clue, what they are talking about.

HOW can one suggest, to listen to laughing tapes or eat tones of vitamins or sleep enough or PRAY?!
Would one suggest that to a patient with HIV as well? Or a cancer patient? Why is it, that people don't take this illness serious? Why is it, that barely NO doctor - all over the world - has a real clue about this sickness??

I won't waste my energy too much here to talk for ever about it.

I am suffering from EBV since August 2004 and one thing is for sure:
only time...
only waiting....
only patience...
WON'T MAKE ME HEALTHY again!!!!

Fact is: this sickness is not popular enought yet what means it hasn't researched enough yet what means you still will here phrases like:
Well, I don't know what else to do...
You are maybe stressed out too much....
etc. etc.

I have been sent from A to B. I have seen sooooooooo many doctors and have seen soooooo many faces with questions so what?

I am very sorry if all my frustration comes out here and I wish I could post THE ultimative healing thing. I can't. :-(
I have read for HOURS on the internet to look out for help. Almost nothing...
Except, ....there seem to be a way to help people in Germany. I have written many emails and letters in the past days and it really might be that I will fly over there.

It is no wonder guru doctor or medication. As far as I know it is a HUGE bloodcheck and each patient will get a unique treatment. It is called micro immune-therapy.

Yes, if I would hear about this first time, I would probably thinK: oh yes, that IS the thing or what? Next question I would ask: how much does it cost?? (haven't we all been spending a lot of money for darn medication or other treatment??)

Well, guess what, people in Germany have a different health insurance system so that for most of the things they don't have to pay. In case of EBV treatment it might be that they have to pay for some, but not for everything. Lucky them....

Feel free to ask more about it. I will answer....if I have energy and if I can get up from my couch.
Maja

PS:I am sorry sweetpea, you have been feeling bad and you have to go throuhg this!

 
Old 03-07-2006, 05:47 PM   #9
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Re: Mono/Epstein Barr

Sweetpea - Thats all symptoms of Mono hun. Take it easy and rest as much as possible. Have a re-test in a week or two to see if Mono has gone. Once its gone your still feel symptoms or a few weeks later and the tiredness remains behind for a while.

 
Old 03-08-2006, 06:00 AM   #10
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Re: Mono/Epstein Barr

Sweetpea- I can truly relate. In 1984 I became so sick and weak I coudn't get out of bed. I was 27 yrs old and a mother. I was put in the hospital and was there two weeks with different tests everyday -- everything from CAT scans to spinal taps. I really thought I was dying because they couldn't diagnose my problem. Finally they told me it was Epstein-Barr virus, and I had never heard of it. Apparently it was new to them too.

I was sick for months, and it was 18 months before I was myself again. I won't give you any advice, because no medicine or vitamins helped me. EBV is a curse. God bless you, honey.

 
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