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.
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.
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.
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.
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.
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 ?
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?
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.
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
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?
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.
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!
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.
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?
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.
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!!!
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
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.
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.
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?
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.
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 !!!!
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!
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 *******
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
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
i got diagnosed with ebv for the first time about 6 weeks ago, showed igM antibodies (suggesting acute infection) and later iGg antibodies. Had all the classic symptoms to start - lymphadenopathy, white exudate on tonsils, sore throat, swollen eyelids, fever, night sweats, headaches - but now, after these have all disappeared, i have been left with some strange symptoms:
1. White tongue, dry mouth - particularly dry when i wake up in the morning. the white covering cannot be brushed off with a tongue cleaner. otherwise no pain or sores in my mouth, so i dont think its thrush/candida, but i could be wrong?
2. Gastro problems - i eat well, but every morning have loose stools where it all seems to come out in one go (is this chronic diarrhea?). Then my stomach has gas /wind for the rest of the day. this is not normal for me.
These 2 troubling symptoms have been going on for over 3 weeks, has anyone else had them with EBV? could it be a complication of EBV?
try green tea ,st johns wort ,and coconut oil these are well known antiviral ,atibacterial,and antifungal. also licorice root and ginger root will help with stomach issues.kefir milk is made from kefir grains non dairy but will wipe out candida in the stomach and intestines may also help with thrush.this may help many of the people on this page.they have helped me with many of my symptoms allowing me to sleep at night and feel better than death.they actually slow down viral infections.
Does anyone know what happened to these guys, HappyGuy12, awnaw, ginak, jason?
I have many of the same symptoms after being diagnosed with acute infectious mono around 2.5 months ago.
Cant shake the feeling that its something else - although have tested negative for HIV several times upto 13 weeks post a potential low risk exposure, using both DUO tests and antibody tests.
I want to avoid getting trapped in a cycle like happyguy - "i took like 52 hiv test thats how messed up in the head i was".
Can these symptoms like chronic dry mouth, white tongue, persistent loose stools, peripheral neuropathy and now flaky skin problems ( sebhorreic dermatitis?) be EBV?
I strongly recommend you to forget about Hiv!! Hiv is not your problem! Mono is the worst diseases that i have ever had in my life! i am struggling with mono for about 9 months. do not waste your money by doing more Hiv test!
I am trying to forget HIV but i am finding it very difficult, due to symptoms I have which are not normally associated with mono - things like sebhorreic dermatitis, dry mouth/white coated tongue (possibly thrush), peripheral neuropathy, etc.
I had confirmed blood tests for acute EBV mono in November - so i know that I had this. My worry is that I was co-infected with something else (possibly HIV) at the same time.
I have had 4 DUO tests negative for HIV at 3,5,8 and 11 weeks - and 2 rapid antibody tests negative at 10 and 13 weeks. So, I have done the right tests at the right times. But , still I am very worried due to the symptoms still being present.
I promise to you that Hiv is not your problem (without any doubts)! I had exactly the same situation! i had for 6 DUO test and the last one was 9 month after my last exposure but i could not accept the results because symptoms of mono are very similar to the symptoms of Hiv!
Did you do a blood test for mono?
Still i have white tongue and peripheral neuropathy! mono is a complicated disease and everyone has a different symptoms! sometimes it takes more than one year for recovering from mono!
Anyway, try to forget about Hiv and just concentrate to boost your immune system for recovering faster!
Thanks for your words, they are comforting and reassuring.
Like you, I am also having trouble accepting my HIV negative results.
I think the main reason is because my health and physical condition is still not as it was before the exposure.
Yes, I had two blood tests (At different dates) for mono, the first was positive igM for EBV, then a few weeks later, positive for IgG. This shows that it was a new, acute infection. This was back in mid November 2014. The acute mono symptoms (sore throat, fever, night sweats, white inflammed tonsils, swollen eyelids etc) all finished around early December 2014. But now the other symptoms - white tongue, dry mouth, dry/flaky skin on face, loose stools, peripheral neuropathy, fatigue - all continue.
Today I visited a clinic again for another full panel STD test including HIV - it is 14 weeks post exposure. The doctor was very dismissive and said firmly that I dont have HIV, he was very keen to kick me out and he didnt want to hear about my symptoms. He then sent me to a counsellor instead who I spent half an hour with. This was actually useful, as the counsellor explained clearly that I need to forget about HIV, that my negative tests show conclusively I dont have it, etc.
So, I guess I need to find another explanation for my symptoms; but also, to focus on mentally getting back a calm and rational state.
You have given good advice. What do you recommend for boosting my immune system?
I already take Vit D, vit B12, iron supplements daily. I try to eat well and also take lemon/ginger with hot water in the morning, coconut oil, etc.
Let me know if you have any tips.
What is your situation now? Did you find out what is causing your symptoms - it is mono, or something else?
14 week HIV DUO test came negative, along with negative hep B and hep C tests. As I previously had a negative antibody at 13 weeks and a negative DUO at 11 weeks, I believe I am truely HIV negative, which is a relief - but what can be causing my current ill health and symptoms? Can it really be Epstein barr virus?
If it is, then it seems I am suffering the same situation as the first posters on this thread - happyguy, awnaw,etc - multiple SYSTEMIC symptoms along with general malaise, lasting for a long time after the initial mono diagnosis.
Wish we could hear from them again, to know if theyve managed to fully recover and how their health is today?
How are you?
As i told you before you are definitely Hiv negative! you had positive IgM antibody for mono, So without any doubts you are struggling with mono!!
Why you are bothering yourself?!! I beg you to forget Hiv!! Please do not make my mistake!! I was overwhelmed with Hiv for more than 6 months instead of trying to boost my immune system! you know that the worst thing for the immune system is stress and anxiety (that i had it during past 8 months).
Still i am suffering from mono after 8 months,i have good and bad days!
one thing more that i want to mention: if you feel that you are getting better do not start your routine activity immediately! you have to return to your normal life step by step! if not, i am sure that you will see reactivation of mono!
Now i am sure that mono is causing all my symptoms and i do not want to think about Hiv any more!
Please take look at this website, you can find valuable information about mono:
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