Epstein Barr Virus (EBV) Community
ebv is horrible
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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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ebv is horrible

let me tell u people ive had it for a year now. the symptoms you read about is only a quarter of it. my symptoms include white tonge, painful swollen lymph nodes , skin problems , testical pain , burning in buttocs, leg pain , lower back pain, hot flashes, mouth ulcers, dhiarrehia, red skin areas , all kinds of numbness and tingling in the body including the genital area. also eye

Ebv resembles all kinds of cancers and stds. i was brushed off and ignored by docs because they did no the seriousness of this virous and how long it actually affects you. i found it takes up to 2 years to go away after the age of 25 im 29 years old. I was treated very poorley at ers and doctors offices. There first assumption is aids , cancer or an std. when the docs tell you it goes away in 2 months its bull thats only  the beggining. maintain a good diet and multi vitamins everyday.
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41 Comments Post a Comment
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Avatar_m_tn
oh man. it took half year to find a soulmate my list includes same symptoms that you wrote and this has continued aprox. 7 months. had to say what sh.t virus this is.
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Avatar_m_tn
how have you been feeling?
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Avatar_m_tn
have to say a littlebit better. but still got skin problems,white tongue,sometimes mouth ulcers ,usually in the morning fatigue,my legs hurts when i stand, nodes im my groing, and badest is my mental health because i spent half year scaring std`s. but i now ihad tested for all all of them and id incist my sexparter to test also and he tested negative too. only thing that found ebv and not so high rates in mycoplasma. oh and ive got acne in in my back too and sometimes black spots on my visíon. this has been very tired time to me. hope you understand my scandinavian english.
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Avatar_m_tn
yup my mental is screwd up as well i go to theray now. does your butt burn too? with the chill in the scrotum? my doc told me to go to a neurologist
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Avatar_m_tn
i took like 52 hiv test thats how messed up in the head i was . im to scared to have sex anymore even with protection. i also keep getting bad acne on my back, my butt and chest
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Avatar_m_tn
yep butt on fire and thies too. this frustrting because doctors doesent seem to care. now im thinking to go to infection doctor maybe they can tell me littlebit more. ok here were are two teens with acne mental issues and nothing seems to help except time. im 24 years old but i feel im in my late 50`s.
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Avatar_m_tn
is your mouth also dry? my mouth is like saharan desert if forgot to brush the white stuff out of the tongue. god this is difficult to write english. its easy when i talk or thinking the words on my head. but everytime i has wrote the subzero throw me with a iceball.
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Avatar_m_tn
not anymore i had the dry mouth in the begginnig. docs cant answer me about the but burning. do you live in the united states?
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Avatar_f_tn
Hello,

I have some of the same symptoms that each of you mentioned. However, most of my symptoms are more neurological in nature. I have been to over 20 doctors and the only thing that I know that I have for certain are high EBV numbers, low Vitamin D, and a conflicting lyme test. I am taking antibiotics for "clinical lyme disease". Neuro thinks MS, Infectious disease doctor doesn't know or care one way or the other, Lyme doctor thinks lyme or MS. I don't know what to think. I don't have the white tongue symptom, but all of this started after an infection. I am supposed to have more mris in September of this year. I can only hope and pray that this is ONLY EBV and nothing else. I hope all of you get better. This 4th of July marks a year and it is very depressing for me. Take care.

Ginak
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Avatar_m_tn
i bet u it is just ebv i was checked for everything ebv brings out a ton of different things that resemble something else and it always comes down to the same thing ebv? save your money i went to different docs bout 45 times this year . all you get is a **** no care attitude and they say go home and rest. does your skin burn to ?
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Avatar_m_tn
ebv messes with your mind and when you here other assumptions that docs make like cancer or ms or lyme disease it stresses you out and makes the illness worse. when you stress lose appetite and sleep. and that aggrivates ebv and my lymph nodes swell up when i stress.

this virus has destroyed alot of things for me such as work, my relationships, and sex life i have no sex drive, and affects my judgement. how long have you been infected ginak?
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Avatar_m_tn
no i live in finland. yes my skin burns. but not all the time. its very annoying.
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Avatar_m_tn
i was also thinking to start eat healthy. i allready eat vitamins. but i have been so long time under the stress that beer is food now. it stinks
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Avatar_f_tn
I have been going through this for a year and i am tired of it all. My skin has hot sensations at some times and then cold sensations at other times. Whatever this is has certainly affected my central nervous system. I feel like my life has been at a standstill. The doctors only frustrate me even more. My thyroid has also been affected by this. My vitamin d levels are low as well. I too eat vitamins but they don't seem to be doing too much either.
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Avatar_m_tn
so you have burning skin or you just feel like have a fever? how old are you by the way? the older you are the worse it is.
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Avatar_m_tn
my left leg is always burning along with my butt . i wish i had the hot sensations any where else but my buttock. i gotta laugh i was almost suicidal i remember when the doc told me it will go away in 2 months lol. bull sh ...t
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Avatar_f_tn
Happy,

Were u seen by a neurologist as well? I have the burning sensations mostly in my lower extremities. My left foot is always buzzing. I wouldn't describe it as burning, but buzzing. It doesn't feel like I have a fever, but more buzzing than anything else. When was your last mri?

Gina
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Avatar_m_tn
I have the same symptoms as you and Ginak and many of the same blood work results I expect (listed in my profile). I haven't had swollen glands however. I've been for a couple of years now and the pain meds don't help much.

I can totally relate that I would give anything to transfer the burning butt pain to anywhere else on my body since it is aggravated when sitting and it is very hard to do much w/o sitting. I can only sit for brief periods since it is so painful, car rides are unbearable so I can't drive very far or very much, it has totally altered my life. Thankfully I don't have a commute or I would never make it.

I don't have any great suggestions, but I hope your pain/helath improves real soon.
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Avatar_f_tn
It feels good to have people talking on this forum. Jason, good to see you. How are you doing on the abx? I wish I could say that I am doing better, but I am not. I will have more mris in the next 2 months. I hope that you are doing well and that things get better for you. I am certainly still in the fight. Its been an emotional day for me because the 4th of July marks a 1 year anniversary. Its hard being around family and friends today. Well, take care and I hope both of you have a wonderful holiday!
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Avatar_m_tn
July 4th 2006 is now 3 years since my headaches began which I think are part of this nightmare and about 2 years with real pain/symptoms.  Never could have imagined I could be this way for so long.

I've been taking biaxin for couple of weeks, prior that my pain level had increased further, which is what helped me to start taking the abx. No improvement yet, but I am hoping.  Thanks for the well wishes and same to you/all.
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Avatar_m_tn
you have had active ebv for 3 years wowl ! im giving up hope i havent even made the 1 year mark i guess i got a long road ahead of me dam
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Avatar_m_tn
i have not been to a nuerologist yet i honestly dont want to waste any more money on a dumb responce . i pay cash to hear i dont know maybe it your mono. ticks me off every time! ive had tons off blood work ,ultra sounds and cat scans nothing but ebv shows up?
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Avatar_m_tn
my skin turns red under my nose ? anyone get reddning off the skin?
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Avatar_f_tn
dry mouth

I read somewhere that a dry mouth is common in people who have chronic viral infections.

I hope everyone here will check out the Health Pages (located to the right of your screen under "discussions"). There is a lot of information on EBV. Also, in MedHelp's fibro/CFS forum, we have a ton of information there as well... including links to the fibro/CFS experts (video presentations), treatments and the latest research on these conditions.
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Avatar_f_tn
Hello Happy,

I have not had any reddening of the skin. Most of my symptoms are all neurological, which to me is even more scarier! I really feel hopeless at this point!
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Avatar_m_tn
do you have tingling as well? what is your neuro symptoms?
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Avatar_n_tn
Guys, I have EBV and Adenovirus and an immune defficiency (Reiter's) as well. There is hope. I have had both for 6 or 7 months and have had pain in all areas you mentioned above and in my chest, lungs, eyes, and stomach and severe back pain at night as well. I started eating raw garlic a week ago. 3 pearls out of a clove 5 times a day. I stink like a pig but all of my symptoms have almost gone away completely. I feel 95% better for 4 days in a row now. I read that garlic was one of the best viral destroyers out there (even much better than any viral prescription medicine) and I thought what could it possible hurt I feel loike such **** all day. The day after the first day I started taking it I felt like I was dieing for 24 hours perhaps a detox or the viral symptoms moving out of the bodies tissues (I don't know or care, I just felt almost completely well the next day) 95% of my pain and sypmtoms are gone and I have my energy level back which is a huge miracle. I was so wiped out all the time I couldn't even function. Try it. I smash it with a spoon to get the enzymes activated, drown it in honey and drink it with a big gulp of water and down it goes. Not pleasant but I don't give a rip... I feel so much better!!!
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Avatar_m_tn
really? do you the the garlic pills will work *** well?
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Avatar_m_tn
Hey all, i just wanted to give a little hope! I'm an 18yr old female, that has been struggling with epv, for over a year now, and i can tell you i know where you're all coming from. I have tingling, numbness, heart flutters, neurlogical issues, intestinal issues, (i've lost 50 lbs, since i've been diagnosed), along with white tounge, and pretty much any symptom you can get from ebv, ive had. I went through a long journey being diagnosed though because my immune system is down from the EBV and, it causes me to have sinitus, and ear infections all the time so doctors assumed it was something wrong with my ears, and after seeing my neurolgist, and had EXTENSIVE  testing for every autoimmune system out there, the only diagnoses he could give me was EBV, and vitamin D deficiency, along with a carnatine defieciency. I would definetly see a neurologist though, he has helped me so much with finding medications that work for me and currently im taking, Neurontin, (which has worked WONDERS on the numbness and tingling thing), I'm also taking Compazine, for nausea, and it also helps with keeping my intestinal system in check, I also take Ritalin in the mornings when i feel like I'm 60 yrs old, and cant move. ANd lastly, i take Ativan to help with the anxiety from all the symptoms. Since starting my meds, i have been able to return to school full-time, and be a mom to my two yr old monster again. The only thing i fear is a relapse, and that it won't completely go away. Has anyone had a really good streak with this virus that suddenly went to ****? my reason for concern is because I am now suffering once again from sinitus, and a double ear infection, and im taking a z-pack, but im not feeling better, or like my normal self. Any advice would be great thanks! btw- EBV *****!!! lol
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Avatar_m_tn
wow 18 and you have all that . that *****. im approaching a year this month and i have all what u have . i dont take anything my doc just said ride it out
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Avatar_m_tn
yeah i couldn't ride it out, i started having hyperventilation attacks from the anxiety, and i couldn't eat from the nausea... it ***** big time.
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Avatar_f_tn
Krissy,

It helps knowing that I am not crazy with all of the neurological stuff that I have going on. I too have EBV and low vitamin D. I haven't had my carnitine checked, but i am sure that it would be low as well if i were to get it checked. Well, thank you for sharing your story. I share many of those same symptoms. I am waiting to have more mris in September to make sure that nothing else has come up as a result of the EBV. I haven't had mris since last year in September, so I really think the neuro is looking for something else workse. I can hope and pray that EBV is all that I am dealing with.

Take care,

Ginak
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Avatar_m_tn
i hope that verything goes well, im sure its just the EBV, it mimics ALOT of illnesses, but it puts a huge toll on you, let us know how things go for you!
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Avatar_f_tn
EBV, Like many of you have stated doctors  tend to overlook the illiness. Unfortunately,we are living in the age of massive diseases and frankly they do not seem to give a darn about those who have them.They connect EBV with fiboro in women,mono in everyone.I am tired all the time and I have gain weight.The medications that I am on for high blood pressure,high blood sugar,herated disk in my neck and back,carpal tunnel syndrome hands,numbness in my feet,depression dealing with shut off energy notices due to no money waiting for SSA   to approve for my physical ailaments I must play the back and forth dance with them this has been going on for a great while on and off 10 years 3 years and a lawyer.I am tired of asking for help and the church has turn me down for assistance because I do not have a steady income I just want them to pay for this months starting new program $545.00 and 358 a month until pay off and my son and his family is moving back home next week and they are due to shut the power off today and I have been praying to God for help. My Cats have fleas and I must remove them out the house before my grand baby move here with me. I am very tired.Everyone look at me and feels I am healthy and I do not win and complain about my illiness.Some folk think we are lying about our illiness.We are avoiding to work.But we are not i could have contracted it in 2005 I had to have 9 blood transfusions I was the "woman with the issue of blood of 2005 I bled so much could stop any more.the female doc I had was from a different country and felt that I didnt need help with my husband who was a multi stroke pt,parkensens disease,diabetes,high blood pressure and here I was bleeding to death.they could only issue me help if the doctor wrote that I needed help .She refused. I change doctors.One of the doctors from her country(India,Pakastine eastern ) explain  to me why the female doctor refuse the male doctors did not refuse it was that female They do not hire out side people to take care of their love ones they take care of them themselves. American gov in 2005 wanted that for us but it has been very difficult my husband died Aug 2006. My son has blame me for his death some what I could not care for a total care patient I had my own health challenges to deal with. If you do not take care of your self no one else will.
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992988_tn?1249422172
Wow... I can't believe I have finally found others like me. It started about a month ago with tingling hands and feet. Then the tingling spread up the calves and forearms. Now there is aching, stinging and numbness all over my body. About 2 weeks ago my lymph nodes in my neck started swelling and aching. I just went to my neurologist today for the results from an EMG test and massive amounts of blood tests. My EMG showed that I had inflammation in my peripheral nerves. My blood test were negative for heavy metals, vitamin deficiencies, autoimmune diseases, Lyme and Lupus, but POSITIVE FOR EBV. Has anyone else had a similar story?
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Avatar_f_tn

High viral titers (and bacterial) are often seen in chronically ill patients. You may want to consider copying and pasting your question for Prof. Garth Nicolson, an expert on these infections and the role they play in CFS, fibromyalgia and autoimmune diseases. Prof. Nicolson is answering questions in the autoimmune diseases (expert) forum here in MedHelp.

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Avatar_m_tn
EBV or MONO is worst illness I ever had !!! For 2 years I am not the same man !!! I got dizziness, mind lost hard to concentrate at all !!! I didn't feel my legs and arms and lips almost 6 months !!! I now have a fatigue worse in my life, dizziness and weak muscles like grand person !!! I was strong and do 100 exercises for arms in two minutes now I can not do 10 !!! I done all posible tests blood MRI EEG and all is normal but I feel like I am in concrete!
This is sad for me I didn't deserve this torture !!! I woke up in evening thinking I am dying feel all my body numb even the glass of water is hard so I can feel heaviness !!! My hair falls, my skin is scratched and dry, my eyes are dry to I have a heart irregular beat... So what a **** is with me ??? Epstein Barr destroy my life !!!!
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Avatar_m_tn
hi im 20 y old and have the same symptoms as many of the rest here have.
now i have been sick for about 3 months and feeling most of the time pretty fine (still have most of the symptoms and feeling sleepy most of the day).
but i have to say that the wors part of this was wondering if it is something else... :(  , it has been really hard mentally for me and i missed allot during that time/
hope we will get better soon!
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Avatar_m_tn
Hi! How's you ebv with that garlic treatment.... It sound interesting and considering it... Please letme know how it helped you from your almost 4 yeah old post. Would you please email me at edfranco1 @ msn *******
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Avatar_m_tn
How did the garlic treatment work for yo? I'm so interested in it... If you could please let me know so that I can recover as I too am so sick and tired of the symptoms ebv has caused. I am always suffering from lack of poor sleep as an addition to everyone's complaints. I need help. If you could call me 71 4 2 961154 thank you. My name is Chris
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Avatar_m_tn
got ebv, 2 months,it doesnt look to go away, symptoms:malaise,bones pain,dry mouth,candidiasis,gastritis, weakness,dizzyness sometimes,lightheadedness,doctors as usual just mind about symtomps but not the real cause, they say the virus will go away.. But when??? Any help would be appreciated thanks
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