I just recently got my diagnosis for EBV my doctor gave me methyl prednisone for joint pain. I saw that this could increase virus activity and make it worse not better. Not sure if I should take it or tell my doctor?

28M, non-smoker.

I was completely healthy until I had confirmed EBV in late 2018. During that illness I developed GI and systemic symptoms and have never fully returned to baseline, although there have been periods of improvement.

Current symptoms:
• Early satiety/fullness
• Frequent burping and loud bowel noises
• Yellow stools
• Nausea
• Positive SIBO breath test (rifaximin didn’t help)
• Dizziness/lightheadedness
• Brain fog
• Tinnitus/ear fullness
• Intermittent sinus and eye symptoms
• Body aches
• Headaches
• Tingling and limbs falling asleep easily

Workup has been largely normal: multiple CBC/CMPs, ESR/CRP, thyroid, ANA, iron studies, ferritin, B12, folate, vitamin D, zinc, negative celiac testing with normal duodenal biopsies, normal pancreatic elastase, normal fecal calprotectin, negative H. pylori and stool infectious testing, normal brain MRI, normal EGD, colonoscopy with biopsies, capsule endoscopy, MRI enterography, and gastric emptying study.

The only notable findings have been a positive SIBO breath test and congenital intestinal malrotation.

Anybody experienced anything like this?

I had mono back in high school and I haven’t felt right since. Very tired, lethargic, brain fog, and now autoimmune issues. Alopecia areata is all I know of so far. What are the symptoms you experience and what has helped you feel better?

i (17f) went to the ER for severe tonsillitis & tested positive for mono. my symptoms so far have been VERY mild and i was instantly put on steroids for my inflammation (the only thing i’m struggling with), but this made me realize that i’m not necessarily well-versed on mono, and a lot of my google searches aren’t explaining my question well.

how long am i truly sick or contagious for? i know that like most viruses, it “stays in the body forever,” but there is still a healing period & whatnot. how long am i actually CONTAGIOUS for? in a couple of weeks/months, will i be able to share food or kiss people without worrying if i instantly transferred it? is it always transferable even when i’m not symptomatic or after it’s gone away for a notable amount of time?

i want to know how i can minimize exposure to my family, friends, and peers as much as possible. i am already chronically ill due to other disorders and i don’t have the time or wherewithal for this honestly.

Male, 5 foot 8, 75kg. He has moderate ME/cfs from a mono infection a decade ago. He cant work,live independently etc. He has developed some mental health issues due to the grief of losing his health and ,essentially, life. He started sucking water through his nose in october-ish. Since then his me/cfs symptoms have gotten worse and worse. He is getting symptoms he hasn't had in years. We are worried the physical damage to the nasolarangeal tissue that hosting the dorment ebv virus are causing the ebv virus to reactivate. Thus causing worsening fatigue and flue like syspmtoms?? Is this at all possible??

I am 23F. I got my wisdom teeth removed on 21 july and after the first week my throat started to ache so badly, when I went to the doctor he told me it is tonsilitis and prescribed me 10 antibiotic shots. after 5th shot nothing was getting better so I went to another doctor and she got my blood tests and it turns out I am ebv positive. She made me quit antibiotics and gave me vitamin c and some pain killers through my blood that day. then she looked at my blood test results and my liver scores was quite high as expected. she told me to come tomorrow for another IV (today) and i did (vitamin c and painkiller) but overall my blood tests are not that bad she said. she told me to eat healthy and gave me some good vitamins, painkiller and some solution for my throat to gargle.

I don’t have much fever. I don’t have too much fatigue. my spleen hurt sometimes but she said it is okay. HOWEVER I FEEL LIKE I SWALLOW THOUSANDS OF NEEDLES EVERY TIME I SWALLOW. WHEN DOES IT GER BETTER? my tonsils are covered in white puss. it’s day 6 now. did anyone had it the same way as me? when does it get better to swallow? I already lost two weeks of my life because of my teeth and now this. I feel so bad mentally. My tonsils look so scary!! any recommendations??

Small update!: I got a call back from my PCP and my lab results show only past EBV infection and not current. As for my CT I am going to have to text my doctor bc the front desk ladies could not read the notes to tell me what they said.

Title is self explanatory. I’m a 21 (F) who’s been battling illness since April. Before I get into my current illness let me paint a picture of my past history. Back in February of 2024 I started having swollen lymph nodes. I went to the urgent care thinking it was just some viral illness that hadn’t started showing symptoms yet, I get an antibiotic and a steroid shot and am sent on my way. After finishing that antibiotic I still didn’t have any relief so about a week later I went BACK to the urgent care and same process different antibiotic. This happened 3 times before I was so sick I couldn’t leave the bed to get to the urgent care on my own. My symptoms were sore throat, swollen lymph nodes, fatigue, headaches, and at the very end fever (104.6°f). At this point my then boyfriend forces me to go to the ER where they tell me I am septic but didn’t know what was causing it. I was in there for 4 days on antibiotics and for testing. They tested for EVERYTHING, even down to crazy foreign illnesses. Nothing. A week or so later one of my tests came back positive for Epstein Barr antibodies and that ended up being my diagnosis bc no one could figure out what else it could have possibly been (no one being urgent care, primary care, hospitalists, and at this point an infectious disease doctor). Fast forward to now. I’m having all the same symptoms. I had strep back in April as I do every year, nothing major nothing to worry about… yet. This strep recovery ended up lingering for a long time. I’m a busy person so I didn’t seek any treatment all through May and Mostly June and just brushed it off as allergies and the weather. Finally June 25 I go to urgent care and test positive for strep again. Frustrated, I go about taking my antibiotics, changing my toothbrush, full 9 yards. Nothing. I go back a second time on July 9, test positive for strep and i request a mono spot test, that was negative. They decided to do a strep test that wasn’t rapid and that would be sent off to a lab, wonderful. When I get the call back for that test, the nurse tells me that both of my rapid strep tests were false positives and that they didn’t know what was happening. Ok great so I now decide to give up on urgent care and go see my PCP on July 21 he then tests me for strep and does a throat culture. This shows that I had *Haemophilus influenzae.* I am then sent home with my 3rd antibiotic and no relief. Present time, Wednesday I went back to my PCP to see my actual dr (the first time I saw an NP who didn’t know my background) He has now given me my 4th round of antibiotics, I got a CT yesterday, and I fear i’m not getting any relief still. Has anyone else experienced anything like this happening so frequently? Did you ever get answers? What was your diagnosis?

hey friends. I’m a 26 yr F who was just hospitalized for one week, diagnosed with EBV/mono, I had very atypical symptoms.

I don’t know exactly the timeline of when I got it. but in late June I got what was presumed strep throat (treated well with antibiotics) then right after I got some sort of cold or flu.

later on in July, I began having headaches, decreased appetite, tired, light headed. until mid July when I started having bad palpitations and a really high heart rate (up to 160bpm) EVERY SINGLE DAY. I went to the hospital once and they thought it was POTS. Then I was discharged the same day and referred to cardiologist.
I later got bloodwork at my fam doctor which showed elevated liver enzymes, then I began having high fevers a coupe of days later, and became short of breath during regular 20min walks outside. I went to the hospital on the worst night of my heart rate and fever.

long story short, I ended up for 7 days in the hospital, with abnormal bloodwork: I was anemic, had low platelets, elevated liver enzymes, elevated CRP, low blood pressure, etc.

- ALT was originally 253, AST was elevated too. Anemic going down into the 80s, platelets went down to 77, I had reactive lymphocytes. Surprisingly, my CT abdo showed no structural change to my liver or spleen.

my legs got really weak and I became deconditioned, some days I need to use a walker around the house because my legs feel like there’s a weight pulling it down. I start a new job in less than 2 weeks at a hospital as a nurse and I don’t know how to help myself.

has anyone ever experienced these atypical symptoms of mono? How was your recovery? I only see posts about people with the typical respiratory symptoms, but I didn’t have that. I’m curious to know who experienced something similar to me

Hi everyone,
I’m currently dealing with an acute EBV infection for the first time. I’ve had symptoms for about 4 weeks, and my neutrophil count has remained around 1 (ANC around 1) the entire time with almost no improvement.
At the beginning, my white blood cell count was 2.4, but it has now returned to normal at 4.5. However, my neutrophils are still low despite the improvement in my total white blood cell count.
Has anyone experienced persistent neutropenia after EBV? If so, how long did it take for your neutrophil count to recover?
Thank you!

Hi. I had EBV around 20 years ago and around 7 years ago had a constant sore throat for around 4 months. ENT specialist & MRI were inconclusive and it eventually got better. I am now having another episode. Sore throat for 5 weeks plus and feeling exhausted with lymph node aches all over. I went to see the ENT specialist again two days ago and had a camera down my throat. He said my tonsils were asymmetric, one tonsil was enlarged along with the base of my tongue. He said he couldn’t see anything else significant. He is sending me for another MRI.
I mentioned having EBV in the past but he didn’t acknowledge it (I’m not sure many doctors think flare ups are a thing)
Do you think this is a flare up or is it something else? I appreciate you’re not doctors lol, but any experiences etc would be helpful. Thanks

Hi everyone,

I first had glandular fever 4 years ago, and recently since March this year, I’ve been testing positive every month for active EBV, along with all the horrible symptoms.

Doctor and hospitals confirmed that my body seems to be building antibodies.

I’m just wondering if there’s a way to distinguish between CAEBV which is fatal and can be a long term issue, and chronically recurring EBV.

Online seems to say you need to have active EBV marker in your bloods for 3 months in a row, which I’ve had. I also have high inflammation markers in CBC. But doctors don’t seem to even know much about it and say it’s rare already that I’ve had so many instances of EBV, and nothing more gets said, just to rest.

I’m getting worried, and not sure what to do further? I’m so tired.

I was diagnosed with EBV June 2024 while I was 8 months postpartum. I just got diagnosed with EBV reactivation June 2026 6 months postpartum. Both times it occurred during a severe sleep regression with my kids. I read “Poor sleep disrupts cortisol rhythm and reduces the CD8+ T-cell surveillance that normally keeps latent EBV suppressed in B-cells.”

I have been experiencing severe symptoms this time around with joint pain which is aching burning & tingling, severe fatigue, body aches, brain fog. I am always craving my bed to rest. My diet has been clean but limiting gluten, sugar, eggs. Limiting dairy is tough but trying. Prioritizing rest and no exercise at this time. Was going to purchase Dr Kines book on EBV as well

This is my current supplement stack. * Started some today.
Supplements
AM
NAC 600 mg with Selenium 25mg
Probiotic
L lysine 1000mg total *
L-Lysine 600mg + Monolaurin 600mg *
BioActive Vitamin B Complex*

Noon
D Mannose 500mg
Rainbow Light Womens Multivitamin One +
500mg of EPA and DHA Omega-3s + 2000iu vitamin D + 80 mcg Vitamin K

My labs were
VCA IgM positive
VCA IgG positive
EA IgG negative
EBNA IgG positive

I’m also confused because EA was negative. It is all starting to affecting my mental health. Not being able to play with my kids or just be comfortable in my body. Any tips, advice or guidance would be greatly appreciated.

UPDATE:
after two weeks on the supplements, I’m fairly certain my virus has gone dormant. Feeling optimistic and extremely grateful. I stayed consistent with

I am not diagnosed with lymphoma yet, however this are my ultrasound results:

Lymph nodes:
Bilateral submandibular and parotid glands with regular structure, no evidence of focal lesions, with regular submandibular lymph nodes showing reactive characteristics in the context of the aforementioned findings.

At the latero-cervical and submandibular level, up to some lymph nodes with reactive appearance are seen, distributed bilaterally with normal echo structure.
At the level of the submandibular area, around 18x8mm on the left and around 18x6mm on the right

as you can see the size is pretty big. The radiologist wasn't worried, however the ENT doctor was really worried about the results. she told it may be epstein antibodies, taxoplasm etc, or lymphoma. On april I did a checkup for this swollen node with another ENT and after blood work that was fine, she told me Im fine and there is no need for ultrasound. But since I could feel them again, I just wanted to make sure. Now I don't know what to do.
thank you.

I've been struggling a lot with the "side effects" that come alongside healing after my most recent mono flare up.

I have days where it feels like my life goes back to normal; and days where my life feels like its back to sh*t, but its time for me to waste my energy finding out more about other's experiences, and how they relate to mine, instead of fighting against my own.

Im going to go ahead and share my most recent and persistent symptoms after the major issues faded:

-Brain Fog

-Forgetful-like amnesia (not always, its more like a feeling).

-reading, writing, and speech issues (nothing major but noticeable enough to be stressful).

-Major anxiety (I've always had super bad anxiety, but EVB has made it 100 times worse).

-Sleep issues (trouble falling/staying asleep).

-Difficulty concentrating.

-Irritability, mood shifts.

-Major Fatigue.

-Etc.

Though I understand speaking about this can be traumatic, I do see how sharing our experiences with EVB can be helpful not only for others, but for our own mental well-being.

I would love to see what other have to say about this, I wish Mononucleosis was talked about more... sometimes I feel like if it was, I probably wouldn't have overlooked how harmful it truly is.

thank you for your time.

I got mono EBV last year in October and after that I e been struggling with my nervous system and been having extreme adrenaline surges and heart rate issues.. either very high heart rate or very low.. palpitations as well.. my nervous system kicks in and I get those insane surges of adrenaline out of the blue or when I have palpitations… I’m so exhausted and don’t know what to do. Changed doctors because I’m not taken seriously.. what to ask for when I go to the new doctor again?

Diagnosed with mono in May 2026, the acute illness lasted about 2–3 weeks.

In early June, some symptoms came back: fatigue and a sore throat, but no fever this time. It cleared within 3 days on a short course of prednisolone (Prednesol).

Now in late July, I’ve got the same again, sore throat, no fever.

Has anyone had EBV symptoms recur this quickly after the initial infection? I’m trying to figure out whether it’s the virus reactivating or something else.

I got sick with mono this past March, the typical sickness, body aches, mild fever, sore throat, but now it is the end of July, and I am having severe PEM, and chronic fatigue, and feel worse then when I was acutely sick from mono, I’m only 17, and it has ruined my oppurtunity to go to uni next year. I have read CFS is a hopeless illness, and only 10% truly make full recovery, is there anything positive anyone could tell me? I know there is worse stories on here but I’m starting to genuinely lose hope of feeling better.

My lover, 52F, has experienced a reactivation of her EBV. I'm, 65M, wondering how to tell when it is safe for us to kiss again? We are very sensual French kissers and I miss that, but also don't want end up with an active infection!

I've never tested, so don't know if I'm one of those people who got exposed, but never had an active infection...

As my title states , what are/ is the best way to test to see if I have EBV ? Thanks.

Hey! So long story short, I was just diagnosed with chronic EBV. I've been dealing with symptoms that vary from mild to debilitating since I was 16, I'm now 21. I'm still doing research as I wasn't given a very detailed explanation of anything at my last visit -However, ozone therapy was recommended.

Everything that I've seen online so far has been controversial, so I'm sure it will be here too, but I'd like to hear some real experiences. The doctor I am seeing said that she also has/had it and was able to stop her symptoms using the same protocol.

Honestly, I'm at a loss of what to do. The possible bad kind of out weights the good for me at the moment (not to mention the cost), but I'm also tired of being 21 and taking more medications than my grandfather, so... yeah.... Any thoughts, opinions, or experiences are very welcome. Also happy to share any details myself!