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Epstein Barr Virus (EBV) Community
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Avatar universal

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.
73 Responses
Avatar universal
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.
Avatar universal
how have you been feeling?
Avatar universal
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.
Avatar universal
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
Avatar universal
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
Avatar universal
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.
Avatar universal
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.
Avatar universal
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?
Avatar universal
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
Avatar universal
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 ?
Avatar universal
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?
Avatar universal
no i live in finland. yes my skin burns. but not all the time. its very annoying.
Avatar universal
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
Avatar universal
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.
Avatar universal
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.
Avatar universal
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
Avatar universal
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
Avatar universal
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.
Avatar universal
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!
Avatar universal
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.
Avatar universal
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
Avatar universal
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?
Avatar universal
my skin turns red under my nose ? anyone get reddning off the skin?
Avatar universal
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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