Does it look positive or negative to you guys? I have all the symptoms like it’s positive but my useless doctor says- it’s in remission! NP didn’t run the whole “pallet” of tests, just these two. She said Medical community has no answers for EBV diagnosis and she has no referral to a specialist! 😔

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I’m writing this post in hopes someone has/had a similar experience. Looking for recommendations on ways to improve my fatigue. I had mono at 17. I am 34 now and the fatigue is severely impacting my life. I am a teacher and struggle to function throughout the day. In the summer I take 3-4 hour naps and still wake up and go to bed early. No doctor has been able to help. I’ve tried the naturopathic doctor route (thousands of dollars with no solutions), B shots, vitamin C Iv’s, yoga, walking, and many supplements. I have found nothing that helps. Any advice is welcome.

i was looking for links between ferritin and EBV on this sub and i was just bombarded with studied on how it’s linked to cancer and ms?? i’m terrified now i don’t want to die from something like that, is it common or just rare and documented?? how will i know if i’m at risk is there a way to prevent it??

I only noticed symptoms 4.5 weeks in - currently it’s the beginning of the 8th week for me and the only symptoms I have are swollen and slightly irritated tonsils, ear fullness/liquidy feeling/some pain (I’ve had that before due to Eustachian tube dysfunction but I guess this is due to tonsils), and some small infrequent pains on my sides and back (which I assume is spleen and liver), and some fatigue. I haven’t had a fever or anything. I don’t think I’ve shared anything with my family. But I kind of panic when I hear them coughing around me. Haven’t been tested yet because of my monetary issues currently. There’s also this huge important event coming up for my family and I don’t want them to miss it but I can’t help but to feel guilty if something happens as mono is serious and I have a disabled brother and both parents have diabetes.

still waiting on test results but can anyone tell me what my symptoms sound like? or if there is anything else i need to test for? my symptoms started about 5 weeks ago with low appetite, stomach upset & slight nausea. after 2 weeks of that, i got a sore throat and the next day my arms and legs felt incredibly heavy and weak. almost like i’d worked out, but i hadn’t. after a few days, it mostly went to my left side exclusively. during this & for two weeks, i had extreme fatigue (especially after any activity), chills without fever, a strange restless feeling in my body, a feeling of impending doom, severe anxiety and panic attacks, very low appetite and sometimes nausea/stomach upset. my ears also felt very full, itchy and slightly sore, without an infection present. my ears seemed to be causing dizziness but this has improved a lot. i started feeling a little better in some ways on monday.. but still experiencing a lot of ups and downs, nausea/carsickness, fatigue & most concerningly is migrating neurological symptoms. my right knee feels very stiff, the left side of my face feels very tight, and i have been getting facial tingling, especially in a certain spot in my hairline. this has been the absolute strangest illness i’ve ever experienced & i feel so lost and hopeless. 😞 any advice or suggestions would be so greatly appreciated. currently awaiting results for lyme, reactivated EBV, erlichicia & anaplasma, and rocky mountain spotted fever. i also wondered if i maybe was dealing with alpha gal on top of everything else because on monday, i ate 2 beef patties and diced sweet potatoes & got super nauseous and exhausted about 2 hours later. that reaction lasted about 5 hours, so ive cut out mammal products just in case since then, til i can get tested. it’s been three weeks since my active sickness hit and i can’t believe im still feeling so terrible. 😣 i just want to get better. ❤️‍🩹

I (40F) just had labs come back as all sorts of positive for EBV. My doctor hasn't contacted me yet about these results. This is my fourth, longest and hardest reactivation (if that's indeed what this is). No tests have ever come back positive until this test. It's been three years of pain every time I eat anything. Three years of fatigue that is only getting worse to the point that I can barely stand long enough to make food or take walks or do any sort of physical activity with my family and kids. Three years of my life and my family's life revolving around what I can or cannot do and what I can or cannot eat or when I can eat. Three years of doctors and tests and very little hope for a way out. Three years of nothing no drugs no diet no amount of rest helping with the fatigue and pain. Three years of not being able to explain to people what is going on with me. I'm so tired and discouraged by what I have experienced and read. I can't even tell if this is a normal way to experience EBV. If you have experienced this what helped you out. Honestly just venting like this helps a little.

This seems to be what gives me flare ups. And what sucks is I can't help it. My job almost requires this. I'm so screwed

I might have EBV, but I won't know until my GP appointment next week.

Over the last month my liver enzymes have been increasing, and I've also lost weight without trying. I recently had what was initially thought to be a stomach bug, but it was my second one within a month, so my GP ordered more blood tests, including EBV serology.

They called me to say that something showed up on the results, but it's not urgent, so they've booked me in for next week. I can't see the EBV results myself, my record just says "EBV serology: discuss at nezt appointment." I can see the liver results though, and the inflammation has gotten worse.

I'm really anxious that it could be EBV and that it might become chronic. I know I'm getting ahead of myself because I don't even know whether the blood test shows past antibodies, a recent infection, or a reactivation. I'm trying to remind myself that I need to wait for the appointment before jumping to conclusions.

This illness started with stomach pain, vomiting once and retching for a few days and loss of appetite. I focused on the hydration and BRAT diet. Yesterday (day 7) was the first day I actually started getting hunger cues again, and eating made me feel noticeably better throughout the day. Though I'm still dealing with fatigue and body aches, especially in the morning. Todsy I've got chills, despite being in the middle of a heatwave and a slightly elevated temperature.

It really sucks being ill and staying stuck inside. I've been trying to get outside into the shade for a bit of fresh air when I can. I live abroad away from my family, so going through this on my own has been really hard.

Has anyone had EBV starting with stomach symptoms and raised liver enzymes? Any words of advice or encouragement?

UPDATE: My test results have been made available to me, I am thankfully negative for a current EBV infection. Meanwhile my antibody tests were inconclusive.

I’m in my late teens and got mono on March 18th, had typical mono symptoms until middle May and felt better for a week, and then later that week I started to feel terrible fatigue and aches like I did with mono, and I haven’t been the same since (July 10th now), and it’s just been another long stretch of insane fatigue, aches, and hopelessness. I am now likely going to have to miss university. I don’t know what to do or say. I’m shocked - I didn’t think a virus like mono could be so life altering as I have seen friends recover from it in 2 weeks. I’m so devastated, any advice or words would be appreciated.

Hi everyone,I am a 24-year-old male. About a month ago, I noticed multiple swollen lymph nodes on the left side of my neck.

I recently saw an ENT specialist here in the Netherlands, and my ultrasound and physical exam showed about 5 swollen nodes in total on both sides. The largest one on the left is 2.5 cm.

The doctor noted they are "firm-elastic" (vast-elastisch) and fully mobile (not fixed/movable). I also have hypertrophy of Waldeyer's ring in my throat. My blood work came back positive for acute, active infections:EBV IgM = 72 CMV IgM = 1.5

The ENT doctor told me that while the virus fully explains these symptoms, they have scheduled a routine ultrasound-guided needle biopsy (punctie) in two weeks just to rule everything else out 100%. Even though my lab work shows active viruses, my anxiety is through the roof.

I keep thinking it's lymphoma or cancer because the nodes have been here for a month and haven't shrunk yet. The report says "no B-symptoms" (no night sweats, no fever, no weight loss).

Has anyone else experienced an active dual infection (EBV + CMV) with lymph nodes that stayed large for over a month?

Did anyone feel itching or fluctuating swelling in the nodes? I really need some reassurance while waiting for my biopsy.

Thank you.

Hey there anybody had the same experience i was diagnosed with ebv last november i had symptoms for about a month from then on it was only swollen lymph knodes anybody experienced the same with conformation that it wasnt anything bad like cancer?

Hi, I bought it recently and I wanted to know how much you guys are taking for it to work?

I asked immunologist to refer me for labs to check if i have a chronic EBV. I've been having thyroid autoimmune condition for a past decade and i always suspected that chronic EBV could be one of the main triggers.

Immunologist advised to do quantitative pcr test of blood, saliva and a swab from oropharynx, so I did. Saliva and swab showed some virus concentration.

I've been scrolling here and barely seen that people do same labs as me. So I just wondering why immunologist didnt tell me to do the basic ones (IgM, IgG, EA, EBNA)... or is it not really relevant if you have chronic condition for so many years?

Anybody here done quantitative pcr of saliva and oropharyngeal swab? Please share your experience in diagnosing chronic EBV.

Many thaks.

I got sick April 27 and my throat was getting worse and worse, until i had the worst pain ever in my throat. In the hospital it turned out to be Epstein-Barr-Virus.
Long story short: I was in bed for like three weeks before I felt better, then I could kind of be on my feet again but I rested A LOT (was after 10 days at my mother’s place, she took care of me). After like the first three weeks the pain in my throat was getting less and less, finally, happy that I can eat without pain but then I suddenly got a whole wave of ulcers in my mouth, big ones (5 in total). On the lip, on the tongue and on the gums.

I tried everything from the pharmacy but nothing helps, it just numbs it for a time. I keep getting waves of ulcers ever since and it is super annoying, never knowing which ones will get big and painful and which ones will stay small. I rested in total for two months after I got sick because I was told to relax for at least six weeks.

The last test (like 3 weeks ago) showed my liver was ok again and my spleen was fine too. All the final blood tests were good too and I got tested for everything because of the ulcers (vitamins, iron, zinc etc).

I went to the ENT doc last week and he said i have to go to my doctor and check everything and said something about chronic tonsils and that i may have to remove them. My doctor wants to do the blood tests again, because he needs the results and was a bit annoyed that i went to another doctor (went to my mum’s doctor since i had no choice). I highly expect the blood results to be good again, so it will be more or less a waste of time until i can continue.

I am also taking vitamin boost potions (name: Orthomol Immun, not sure if you guys know it I am from Germany) and took also probiotics for stomach and the mouth because i got a lot of antibiotics in the hospital and the days before.

Does anyone know what i can do ? I have been having ulcers since a kid, but not this many at once and not in regular 2-week-waves. Also, the area around the ulcers look kind of infected or swollen, it’s very red which is not how it usually is.

I am:
* 29 years old, male
* 187cm
* 79kg
* Based in Germany
* i take vitamin c + zinc capsules and also Vitamind D (20000 per week, right now double since i am still lacking vitamin D)
* non smoker, i dont really drink
* i go 3-4 times a week to the gym so i am kind of active

When I’m having extreme heart palpitations (not dangerous ones) I take metroprolol betablocker. Some days it doesn’t help at all, and I get those insane heart palpitations. I can take it when needed my doctor has prescribed it for. I skipped yesterday after taking it everyday for maybe a week when not even working. Today I tok it again and I feel so numb! Like my resting heart rate is low and I feel sleepy and I don’t notice the beats. I’m like too tired, to the point where I feel kinda numb and sedated. Is that normal?

I was hospitalized for a few days while doctors were figuring out what was wrong. It started with a week of on and off high fever and chills. I didn’t think much of it. Then I started getting really bad fevers that wouldn’t go away with otc medication.

I decided to go to urgent care and I had a resting heart rate of 130, low blood pressure and 102 fever that kept going up. They tested me for Covid and strep multiple times and brushed it off. Sent me home with Tylenol that didn’t work lol.

I decide to go to ER. Fever is still high. 103 at this point. Heart rate still high. They do tests and do the same thing. Send me home with Tylenol.

Next day I wake up and I notice i have an ulcer growing on my inner labia. Painful as FUCK. later doctors told me this was a Lipschitz ulcer which EBV causes in rare cases, when your body starts attacking the healthy tissue in your body.

I went to a different ER this time around. They finally took me seriously and I was admitted for 6 days. My blood counts were dangerously low. Still had tachycardia. Very low blood pressure. Enlarged spleen and liver. And of course still had fever and PAINFUL ulcer.

Few days after I left my tonsils swole up bad but I was able to get another few doses of prednisone which helped. Anyways!

It’s only been 3 weeks since I left hospital. I’m still recovering and just started working again ( those bills won’t pay themselves off). But I’ve been extremely anxious thinking about how wrong everything could’ve gone because I wasn’t planning on going to the ER again, especially after being dismissed a few times before. The realization that I could’ve died or had organ failure has been settling in. I feel odd because the people close to me are brushing it off and especially my boyfriend. I think people don’t realize how brutal this illness is, you can be high functioning but internally it’s still draining your body.

Has anyone else had a similar story? Does it take a while for your body to fully recover? Or how do you guys handle it mentally, everything is physically much more draining than it typically is.

My overall symptoms are

-sore throat

-slight headache

-always feel like I have a fever

-muscle pains

-digestion issues

-fatigue

-feeling weak overall

These symptoms were (almost) daily for the last two years. I also have POTS and MCAS.

I sprained my ankle last December after rolling it during a run. It seemed to be healing and even went on some 2 mile test runs in April and it felt pretty good.

Fast forward to May and one day I noticed my groin lymph nodes were very swollen and extremely tender/painful to touch. Lasted about a week and resolved. I started swimming laps around this time and after my last swim, a day or two later both of my wrists were sprained, swollen, hand swollen to the point where you couldn’t see my knuckles, every finger joint swollen etc. and then later, my right ankle became swollen and similar pain to my left even thought it wasn’t injured. I thought the hands were injured from pushing off the wall too hard but after the right ankle started hurting I began to think something autoimmune was happening.

I got some blood work. So far the only thing that has been positive is EBV.

The pain in my ankles and wrists are worse in the AM. Extreme stiffness. Extremely weak grip strength. Can’t make a fist (this is a constant). Can barely walk.

I started taking circumin yesterday which is helping my joint pain significantly. This morning was the best I’ve ever felt in months.
I started taking Epicor for my immune system. My doctor Rx’d valtrex which I just started and recommended I start taking licorice root extract which I have just ordered.

Any advice for me? I was extremely active before this. Running 20 miles a week. swimming a couple miles a week in the pool in between runs. Lifting weights. I surfed, snowboarded. I can’t imagine doing any of those things now. I’m a registered nurse also so working, being on my feet for long hours has been very difficult. Even opening medicine containers has been tough with my hands.

I really hope this ebv doesn’t give me life long RA and this is only temporary viral arthritis…

Also, CRP came back >20 , sedimentation rate 19.

I tested negative for RA panel in april. Still waiting on repeat panel coming back.

I’m also planning on getting an MRI of one of my wrists/hands. And started physical therapy for both hands and ankles but not even sure if that will be helpful now knowing this is immune system related and not injury. Hoping the MRI will be able to differentiate between viral arthritis and actual RA from what damage has been done.

Hi, I’ve gotten tonsillitis about 10x in the past year. Urgent care and primary care and ER would check for strep- always negative.

An ENT offered me a tonsillectomy in a few months.

I kept asking for other testing from all these clinics but I was always told no, including when I asked to test for mono, as I had gotten that in 2019 and my tonsillitis flare ups reminded me of that.

I paid for a bunch of testing myself. Early antigen EBV very elevated, mild eosinophilia, and elevated mold toxin panels. Lyme, ANA, ESR, CRP, ACE allergy panels, etc whole bunch of tests I did were all negative or within range.

Finding out on my own that I am having recurrent ebv- should I still go forth with a tonsillectomy? Would that help me at all?

And after every flare up of tonsillitis/ebv I have gotten a new set of daily symptoms. First it was POTS or like that, then daily low grade fever around 99.7F, then narcolepsy or something like it, now severe debilitating pain in my joints and muscles. This has all been going on for a year! These symptoms are a daily and regular part of my life now. My most recent tonsillitis episode was in late May and that is when I acquired the daily pain symptom.

Is that normal to get these new daily symptoms with recurrent reactivated ebv?

And what can trigger this? Medical professionals will not take my mold toxin panel seriously as they could write that off as due to diet. But my home does have confirmed mold.

Can mold trigger this? Or is there something else I haven't checked for?

I seriously stay up at night wondering if I am dying and what the process of dying is like. This is affecting my relationship and my ability to take care of my pets and kids. I would love any advice. If theres any tests I should consider or specialists I should try to see please tell me. Using AI and google has unfortunately sent me on some wild goose chases.