share your ebv symptoms

Hello,

When I was 15 I had very severe EBV/mono/glandula fever. I was horribly sick for 18 months with pretty much all of the symptoms listed. I'm now 36 and have no kids and a very nice relaxing job. Somedays I still can't make it through the day without a nap I struggle with any less than 8 hours sleep a night. I've had my bloods checked a few times and they all look fine. I'm just starting to wonder-could this life long on going tiredness be to do with EBV? Does anyone else feel this way? Any advice?

TIA 😃

hi everyone! i resinate with a lot of you and thankful i found this forum. i finally got diagnosed with chronic mono in february 2021. i had been sick a year prior to that. i just kept getting covid tests done because other than having body aches and fatigue i wasnt too alarmed. it wasnt until September 2020 i started getting really bad stabbing chest pain, body aches, thyroid swelling and extreme fatigue that i was diagnosed with pericarditis, which is inflammation around the heart.. it subsided a bit but happened again and got bad again in january 2021. this time i had a dr tell me it was pleursy, which is inflammation around the lungs. i was also referred to a cardiologist to see if anything was wrong. so after a year of 4 covid tests, 2 er visits, numerous GP visits, a few visits to the cardiologist, numerous blood tests, ultrasounds and ECGs they finally figured out its mono. Mine has been extremely painful, ive consumed so much advil. my spleen and liver still get flare ups and swelling. i still get random stabbing pain and body aches. im very clouded and makes work difficult (missed 2 1/2 months). its been one of the most frustrating health issues ive dealt with and im just waiting to get my body and energy back but doesnt feel like that will happen.

my symptoms with chronic ebv have been:

-nerve pain all over body (tingling, shooting pains, jolts) : YES

-back pain: YES

-neck pain and pressure YES

-sensitive scalp YES

-ringing in ears : NO

-mouth sores/bleeding painful gums: YES

-on and off sore throat: YES

-sharp pains in lymph nodes: YES

-rib pain: YES

-heaviness in rib/chest area: YES

-to the bone FATIGUE: YES

-dry eyes: YES

-extreme health anxiety: YES (granted I've had anxiety for a lot longer than I've had mono)

-one bout of mild oral thrush: NO

Hello, this sounds like you have had a terrible time! my friend finally got diagnosed with chronic EBV after a lot of years waiting and said is absolutely awful and everyones symptoms slightly different. But yes couldnt agree more, the GPs know nothing about it and think is just a sore throat!

i have just started getting symptoms which are quite varied triggered i think by cough and sore throat and then a week later felt i had the flu with muscle twitches, muscle pain and random foot pain and different joints different each day. Also feel quite permanently hungover with the lovely anxiety/panic attacks added in. But also sore throat lingering all the time in background. i feel like you say worried something sinister as so stressful even though been reassured by GPs but they are unsure if i have Post viral fatigue from EBV as Igg possitive but not to say i had it this time but in the past. also they think fibromyalgia or CFS/ME. so frustrating as if they dont know what am i meant to think. also i have had a baby four montha ago so they think thats caused all thus too

hello everyone 😃 does anybody have/had vision problems because of EBV?

hi!

wanted to ask anyone here because im starting to become hopeless. i have pretty much all the symptoms everyone describes includding the severe tinnitus, nerve pain etc and i have had EBV for almost ten years. I wanted to know if anyone else suffered from severe hair loss. My hair has never recuperated. I had rapunzel style hair and thickness and I have tried everything you can for EBV but it grows out thin and weak and maybe a third of what I had. wanted to know if this was common

Hi, I hope someone can help me. I have chronic Epstein bar virus. I don't know how dangerous it is? I heard it can cause Cancer? What I really don't understand is besides my test results I feel great, Im 47 and feel better than I ever have. I have tons of energy and never tired. I run and workout every day. No aches and pains. Blood pressure and glucose levels are excellent. Low BMI. I was tired and weak and had lots of aches and pains a few years ago but since I went on the keto diet I never felt better. lost 40lbs . What can I do about this chronic ebv ?

Hi,

Thank you for this forum and sharing symptoms! I would like to share mine too. Mine started the end of February/March. I remember a sore throat, white patches in the back of my throat (I wondered if it was strep), being so exhausted - then one morning I woke up with my neck swollen on one side and so much pain. I went to a walk-in - no mono test - and they ordered a CT scan of my neck - which showed lymph nodes swollen on both sides of my neck. A week later and the pain was still there, I went to another doctor. They did a mono spot which came back negative. They sent me to get an in-depth blood test which revealed I had a "recent mono infection." In months since, I've had a CT scan of my brain and an x-ray of my neck because of horrible migraines - that I suppose were related. For months, I was so exhausted I could barely move. It's mid September now and the grogginess has gone away. I still get mouth sores every now and then - and after reading some of these posts I assume it's still because of mono? I just got over a bad one on my tongue.

But I still have a lingering painful spot - lymph node - under my chin/jaw, which has me freaking out. It especially hurts when I touch it. I don't want to have any more radiation from another CT scan so I wonder if it's necessary. Can I ask if any of you had some lingering, painful glands? And how long before they went away?

i’m sorry to hear about everything that you’re going through I’m currently going through almost the exact same things and I’m waiting to get a DNAPCR test back. Before this I was working out five days a week and running a few miles a week as well.

I have been going crazy for a year and a half trying to figure out what was wrong. I even called the NIH and was working with them to try and help me.

I’ve probably been to 15 specialists and they all say that chronic Epstein-Barr is extremely rare. No one really wants to acknowledge it. I believe there’s a link between Epstein bar and Long Covid as well . Ive probably been to 15 specialists and they all say that chronic Epstein-Barr is extremely rare. No one really wants to acknowledge it. I believe there’s a link between Epstein bar and Long Covid as well. Still doing testing so not 100% sure what’s wrong but had elevated antibodies IGG

The fact that so many people have long Covid and ebv activation is present in a high percentage you will see a lot more money and research going into this area so a cure or therapy might be in site sooner than you think.

look at the HIV epidemic. All of a sudden rich people started getting the virus and a pill came along to help them. That’s because more money was going towards research and development.

I have been experiencing symptoms for over a month and my doctors visits have been only frustrating. I have cried because no one will listen to me. the only thing they seen was low b12 in my lab tests. my anxiety has definitely made this x10 worse for me. I can't convince myself I'm not dying. this has all made me feel better but feel bad that there are really doctors out there that just don't believe people when we say something is not right.

Hi guys, I'm so confused as to what is happening. 26M

Mid July 2022 I got what I thought was bacterial infection due to the symptoms severity and because I went to emergency which showed my crp was high (76).

In the 4 months since then, I've had 8 recurrences of, severe sore throat, high fever, slight dizziness and tiredness in my eyes, increasingly worse fatigue while ill.

In OCT i went to a private immunologist who suggested I do a test for EBV. My IgG antibodies were >750IU/ml while my IgM were <10 IU/ml. According to the doctor, this implies I had the virus recently and while it's not active (igM being low), my body is still dealing with the effects of it (igG > high). He said that in the next few months my IgG levels should drop to around 140-200iu/ml which is consistent with anyone who'se had EBV in their life. Until then I should limit exercise and was prescribed inosine pranobex and to just eat healthy, take vitamins if needed.

Since getting those tests, I was satisfied that I was just unlucky and would probably last a few more months. However, today I got yet another occurrence of the symptoms and googled "repeat mono". I wish I didn't. The research articles that come up about Chronic EBV make it sound like a terminal illness which can only be cured by bone marrow transplant and even then it's not certain?!

What on earth? Now I don't know if I've had this for years (I've always gotten ill more often than my family, friends etc and I always put it down to bad immune system.) I had my Tonsils removed 4 years ago cos I kept getting tonsilitis, now I don't even know. I did get a bit better since then and never had fatigue as a symptom until now so maybe this is new but I'm so scared of this chronic EBV prognosis.

I also feel mostly fine inbetween occurrences. So no fatigue until I get the sore throat, the fever and the headaches but it keeps happening pretty much every 2 weeks and lasts for about 10 days...

Don't know if its related but in the past 6 months or so I have also become even more prone to missing words, worse grammar (both spoken and written) and overall even worse memory than before (my memory or grammar was never ideal but it definitely feels worse now).

I want to do the EBV DNA PCR test to keep track but I cannot survive without exercise and even the slowest jog for 5 minutes triggers a new spell of 10 day illness.

Any advice appreciated if anyone has had similar to me, any positive news or anything to calm me down would be great!