r/EBV

Hi everyone,

I was diagnosed with EBV about a year ago. My initial symptoms weren’t too severe, but ever since then I’ve been dealing with persistent tingling sensations.

It mainly feels like needle-like tingling in my hands and feet. Sometimes it also spreads as a sort of buzzing or vibrating sensation throughout my body. On bad days I even notice tingling in my lips and teeth.

I’ve read that neurological symptoms like this can happen after EBV, and I’m really curious if anyone here has experienced something similar.

If you had this kind of tingling, what helped you the most to reduce it or make it go away? Did anything in particular improve it over time?

Any experiences or advice would be really appreciated.

I (37f) woke up on February 10th with the sole symptom of a fever that persisted and got higher until I was hospitalized and diagnosed with EBV about 2 weeks later. Aside from slight pressure under my left ribs occasionally, fever and fatigue have been my only symptoms. I have since followed doctors orders of rest, haven’t returned to work, and have basically spent my time between the couch and my bed. In that time my fevers have gotten lower but I am still having regular temperature readings of 38.1 C. My doctor seemed unconcerned about this 3 weeks ago and was even convinced that I would be back to work by the beginning of June (I am a midwife in a hospital and work changing shifts, so this seemed overly optimistic anyway). Going on short walks to the grocery store or even just to drink a coffee with a friend still leave me bedridden the next day with fatigue.

I saw my doctor again yesterday and he still seemed somewhat unconcerned but referred me to a hematologist for more tests. I looked at my lab results today before I sent them to the hematologist and saw that my EBV EBNA and EBV VCA-IgM were positive at testing as well as a positive CMV-IgM. No other tests were made. I assumed that what my doctors told me - new infection and especially unpredictable because of my age - was correct but now I am reading that the EBNA would not be positive with a new infection so either this is reactivation or something else?

Have my doctors fumbled this whole thing? Was I given bad advice? I am waiting for the hematologist to give me an appointment but is that even the correct choice or should I find a new doctor and go to other specialists? For reference I live in Germany so I am unsure if or how the diagnostic protocol might different to other countries like the US.

Hi, I was diagnosed with IM on 17/1/2026 my EbV IgM result was >180 and IgG >30 I’m fatigued until today which I saw it’s quite common among many others (brain fog, dizzy mornings high resting heart rate, minimal effort is extremely tough etc ).

It might be helpful if you could describe whether you had a hoarseness in voice when speaking especially if I was doing a minimal effort like walking, weird headache (above ears), and blurred visions (mostly with black dots) with light sensitivity and slight pain behind eyelids, sometimes joints pain as well, night sweating (most of the nights), sometime diarrhea.

Anyone can relate?

32 years old male healthy

I’m 26 year old male and December 24 I started having gi issues out of nowhere and was diagnosed with gastritis, was super on and off and then February 11th I felt super ran down and had a mid day dizzy spinning episode that lasted 1 minute but ever since then I’ve been pulling to the left and waves of dizzy walking and standing but am fine laying down. Feb 16th had a bad sore throat for a few days and then fought through it until April 24th I had went to hospital and liver levels were elevated and I got back a positive mono spot screening. My EBV panel numbers are as follows

<9.00 Negative
9.00 - 10.99 Equivocal
&gt;10.99 Positive
Epstein-Barr Virus Viral Capsid Ag (VCA) Ab (IgM)
EBV VCA Ab (IgM) < 36.00 U/mL <36.00
U/mL Interpretation
<36.00 Negative
36.00 - 43.99 Equivocal
&gt;43.99 Positive

Epstein-Barr Virus Nuclear Ag (EBNA) Ab (IgG)
EBV EBNA Ab (|gG) 460.00 H U/mL <18.00
U/mL Interpretation
<18.00 Negative
18.00 - 21.99 Equivocal
&gt;21.99 Positive
Epstein-Barr Virus Viral Capsid Ag (VCA) Ab (IgG)
EBV VCA Ab (|gG) 653.00 H U/mL <18.00
U/mL Interpretation
<18.00 Negative
18.00 - 21.99 Equivocal
&gt;21.99 Positive
I had a VNG done and it showed a 44.50% right ear unilateral weakness and everything else tested negative on the VNG
I really want to know if this is still what’s causing my constant dizziness and GI flare issues being over 4 months of dealing with all of this. And when this will ever settle down! I haven’t been able to work or anything for weeks and am getting supper down and worried about this being forever. Any help would be amazing and hopefully a timeline if others have experienced similar. I just want to know if it’s the mono EBV that has caused this all

Hallo, ich bin mir nicht sicher ob mein Posting hier rein passt.

Über mich:
Ich bin m, 59 und kämpfe seit vielen Jahren oder gar Jahrzehnten mit einer mehr oder weniger "dezenten Erschöpfung" und allen möglichen Symptomen einer ME/CFS die quasi beliebig mehr oder weniger besser und auch wieder schlechten wurden.

Vorgeschichte:
Mit Anfang 20 hatte ich eine EBV-Primärinfektion d.h. ein sogenanntes "Pfeiffersches Drüsenfieber", es war damals kurz und heftig d.h. 2 Tage war kein festes Essen möglich und heftiges Symptome, danach ging es 2 Tage ziemlich schnell wieder besser und ich nahm an dass das dann weiter so geht ... leider nicht, "gefühlt" hat mich der Mist nie so ganz verlassen.
Meine Lymphknoten im Unterkiefer waren bis ich Ende 40 war quasi dauerhaft vergrößert aber alle Ärzte schoben das auf das EBV und es wäre "normal". Jeder Infekt kündigte sich quasi mit leicht schmerzhaften Lymphknoten an. Vor ungefähr 10 Jahen wurde die Lymphknoten dann langsam wieder kleiner um nun seit einem halben Jahr wieder ganz leicht vergrößert zu sein.

Verlauf:
Es gab Phasen in den letzten fast 40 Jahren in denen es mir eigentlich gut ging, ich konnte leichten Sport machen und fühlte mich eigentlich gut, mit Ausnahme nach grippalen Infekten, danach ging es mir wochenlang schlecht. Andere hatten 2 Tage Schnupfen, ich 2 Wochen Erschöpfung, Müdigkeit, übermässiges Schwiten, Hals-/Kopf-/Gliederschmerzen ... etc. p. p. . Ich konnte mich immer soweit erholen, daß ich ein halbwegs nomales Leben führen konnte, jedoch vor allem im Winter quasi "dauernd" mit Grippegefühl gelebt habe. In den Sommermonaten ging es mir dann meistens besser bzw. auch richtig gut, bis der erste "Rotz" wieder im Anflug war.

Ein Vitamin D Defizit habe ich vor knapp 10 Jahren festegestellt und nehme inzwischen VitD ein und kontrolliere einmal im Jahr den Blutwert.

Meine EBV-Werte sind mehrfach in den letzten Jahren gemessen worden und lagen immer "hoch" jedoch für eine durchgemacht Primärinfektion wohl normal.

EBV        VCA IgG-Ak (CLIA)           >750 u/ml
EBNY-1 IgG-Ak (CLIA)      206 u/ml

Auch der CMV wurde einmal gemessen und lag ganz knapp über dem "Grenzwert" was aber wohl auch als eher normal bewertet wurde.

Es wurde von einem Labormediziner ein leichtes CVID-Syndrom (Immunschwäche) bei mir vermutet, nachdem die dafür zuständigen Antikörper (IgG) nach einer Pneumokokkenimpfung nicht höher wurden sondern sogar etwas weniger. Therapie erfolgte keine, für eine "Immunschwäche" ging es mir immer zu gut.

Ich hatte (von Grippeinfekten etc. abgesehen) keine schlimmen "Crashs" d.h. das ich tagelang das Bett hüten musste o.ä. aber es gab immer wieder Phasen in denen ich "zu Tode erschöpft" bin/war und keinen klaren Gedanken fassen kann - ich nenne das dann den Zombie-Modus weil ich grade noch so funktionieren kann, aber sowohl physisch als auch kognitiv schon auf "Notstrom" laufe. Ich bin dann grade noch so fähig bin im Alltag zu funktionieren aber dann nach 7 Stunden Bürojob ohne Besonderheite nach Haus komme und dann eigentlich nichts mehr geht ausser sitzen und atmen, selbst das "Sehen" fällt mir dann schwer. Ich mache im Job dann "dämliche Fehler", vergesse was mir gesagt wurde etc. schreibe Mails in denen (trotz mehrfach "Nachlesen") manchmal ganze Sätze fehlen oder "verbaut" sind etc.

Ich schlafe dann 9, 10 oder 11 Stunden und stehe trotzdem wie gerädert auf (Schlafapnoe etc. ist größten Teils ausgeschlossen).

Ich weiß nicht wie ich ich das alles Einordnen soll, mein Hausarzt ist skeptisch und sieht mich (ohne es natürlich zu sagen) eher im Bereich "Hypochonder".

Kann der EBV vor "Jahrzehnten" immer noch dahinter stecken und was kann ich tun?

"One of the gp42 antibodies performed extremely well. Across all three experiments combined, EBV was undetectable in every one of the 13"

Hi everyone,

I had a flare up a month and a half ago of reactivated glandular fever, had cold chills, swollen lymph nodes, cold sweats, fatigue, dizziness etc. went and got tested by doctor and she said my blood counts show active EBV despite having it for the first time 4 years ago.

Time passed for a week or so and it eventually calmed down. Unfortunately it caused heart palpitations and tachycardia episodes, and insomnia which led to a lot of stress on my body after I “calmed down”.

So 10 days ago, I woke up with an insane sore throat / swollen tonsils with white pus all over them, just like my first experience of glandular fever. Fatigue, barely swallowing, swollen lymph nodes etc.

Doctor did a whole number of swabs and tests and no strep or tonsillitis shown, but my EBV levels were still active and current. A few days ago my tonsils got so bad that I had to go to hospital and get steroids and codeine, as I could barely breathe or swallow.

It’s now 2 days post steroids and the steroids are starting to wear off and my throat is on fire again. I’m doing all the things, sleeping a lot, taking tons of fluids and soups, lots of probiotics and immune products, on and off time off work (most days work from home but some days I take leave) etc. but it’s just not going away.

I feel like when I had mono 4 years ago it went away faster and there was some improvement every day, now there’s just not any improvement day to day. I really don’t know what to do…. I have major work duties come a week away and I’m trying to get better for them but I just have no idea what else I can do to fight this off.

I used to be on high strength antibiotics for 5 years due to recurrent UTIs and so now I’m worried I’m so immunocompromised that my body can’t fight off infections. Does anyone have any advice?

Hey everyone, I really need some reassurance from people who have been through this. I am a few weeks into a confirmed EBV/mono diagnosis, and I am experiencing a terrifying wave of new symptoms.
My main question is: Are severe, widespread body aches and an intense, rash-less, highly reactive itch normal for this stage? Here is my exact sequence of events:
• The Start: It began with a fever and a swollen lymph node. My doctor misdiagnosed it at first and gave me Zinnat (cefuroxime, an antibiotic).
• The Itch: Within days, more nodes popped up and I developed an intense, body-wide itch that started on my scalp. There is absolutely no rash, but my skin is completely hyper-reactive—the second I touch or scratch it, it flushes bright red. I would intensely itch and it started to fade but it pops back up from
Time to time
• The Steroids & Throat: I stopped the antibiotics on the 4th day, took two 100mg cortisone/prednisolone shots over the next two days, and then hit a brutal throat phase with severe white pus tonsillitis, neck pain, and sleep issues.
• The New Phase (Last 4 Days): My throat symptoms have finally completely resolved, but now I’ve been hit with overwhelming, brand-new symptoms. I have severe, radiating muscle and nerve pain all over my body—specifically in my neck, arms, sides, legs, and shooting through my shoulder blades. On top of that, every time I try to drift off to sleep, I get this terrifying sensation like I am fainting, and my body violently jolts me awake in seconds.
My blood work shows very high systemic inflammation (CRP is 17.4 and ESR is 29) and elevated liver enzymes (ALT 160.6, AST 59, Alk Phos 200.5), but my hemoglobin and basic counts are normal. Also my TSH was high chancing from 8 to 5 in the same week
Has anyone else had this exact sequence where a massive wave of moving nerve/muscle pain and reactive, rash-less skin itching hit after the core throat symptoms resolved? Is this widespread aching normal, and how long did it take to finally fade?

Hi, I'm 21.

I've been dealing with what seems to be mono symptoms for a month and a half and it doesn't go away (tonsils are swollen and painful, fatigue that keeps me from living my daily life with ease, muscle pain, mouth ulcers idk if it is linked but never had this before the other symptoms). Since last week my lymphatic systems seems to be going slow (swollen ankles, random cyst in elbow crease.

The symptoms started while I was dating someone so I first thought I had an sti. All tests came back negative (after waiting 6+ weeks).

In the meantime I got the ebv serology (detecting anti bodies) done and it came back saying equivoquial. 1st time was April 17th, 2nd time was May 7th. (IgM say 0.71 and 0.75)

Can the ebv anti bodies test be triggered by another herpes virus like cmv ? I wonder this virus infected me rather than ebv since my results are so confusing.

Has anybody gone through this before ? I'm starting to worry :/

Guys, I’m posting here because I feel like I’ve reached a dead end with a health problem that still feels unresolved and has completely changed my life over the last few years. I would genuinely appreciate if anyone with similar experiences reads this and replies.

Male, former competitive cyclist, trying to understand a chronic condition that gradually developed after a difficult period in late 2022.

In October 2022, I had a severe allergic reaction/shock and COVID around the same time. Later on, there was suspicion of EBV/mononucleosis as well, although we are not 100% sure because I only did the EBV blood tests in June 2023, where antibodies were elevated.

Because I was still competing seriously at the time, I probably made things worse by continuing:

- intense cycling training

- races

- altitude training camps

- overtraining in general

To this day, I still feel unable to function normally physically.

I cannot tolerate exercise normally anymore, and even walking or standing can trigger symptoms:

- standing for some time causes burning in my legs

- walking can also trigger burning sensations

- physical effort feels abnormal compared to before

One of the worst symptoms I had until around 1.5 years ago (which has improved somewhat but I still feel is still there in the background) was extreme general fatigue. I used to wake up in the morning feeling like I had not slept at all during the night. The exhaustion was overwhelming.

Main symptoms:

1. General fatigue / unrefreshing sleep
2. Burning sensation in legs (especially quadriceps)
3. Burning sensation in arms/hands
4. Muscles burn very quickly with effort (for example wall sit burns almost immediately)
5. Recurrent “sore/bruised” feeling in the same spots in both legs and upper hamstrings
6. Muscle tightness/pain without obvious exercise

Eye symptoms:

- Severe dry eye symptoms with pain and very red eyes

- Eye pain improved slightly with treatment, but redness still fluctuates a lot

Important:

- I am not progressively losing strength

- EMG was mostly normal previously

- Autoimmune blood tests (ANA, SSA, SSB etc.) were reportedly negative

- Doctors are currently investigating possible small fiber neuropathy / dysautonomia

Mentally, the fluctuations and uncertainty have been extremely difficult, and I would really appreciate hearing from people with similar experiences.

How did you know you had EBV reactivation?? I had mono in 2018 for the first time and ended up in the hospital with organ inflammation. I had it for the 2nd time a few years ago, not as bad as the first time but still comes with awful flu like symptoms. I’m sick currently and went to urgent care yesterday, tested negative for all the typical viruses but I didn’t think to have them test for mono because I didn’t have a fever yet (I did get one later in the day) so the doctor thought it was just allergies, but it feels exactly like the last time I had mono symptom wise so I’m pretty positive I have it again. The weirdest thing is I shared a drink this past weekend with my friend who I know for a fact I got mono from the first time, coincidence or not I have no idea. Is there a way to prevent this from reactivating and also is is super easily passed on to others? I share drinks with my toddler daughter we sleep together, etc. I’m terrified of her getting it now.

Like many after catching Covid, my EBV became reactive (confirmed through bloodwork by a functional doctor). I’m not sure the connection between EBV and HPV, if it’s the same thing or not, but as far back as I can remember I’ve always been susceptible to cold sores on my lip(s) and/or a cluster of blisters on my penis towards the start of it near the body (sorry if TMI). Typically I’d only get 1-2 outbreaks per year, usually one or the other, or both; and 99% of the time they would only happen when “provoked”. Such as I’ve always had a bad habit of picking my lips when they get chapped, and usually if I picked it in the right spot and it was more than just a layer of dead skin, it would immediately cause a cold sore to appear and usually take a week to subside. Same with down stairs, something about shaving down there would cause it every once in awhile. Neither would happen every time, but again usually I’d get an outbreak once or twice per year, and rarely would happen at random without shaving/picking lol.

I had a bad flare of symptoms in February just prior to getting the confirmation of reactive EBV. I had what I suspect was Covid in January which lead to this, I’m confident in that because I’ve went down this road before with Covid back in 2020 and 2 years of “long covid” to follow. Carnivore diet seems to put most to all symptoms into remission in short time, I just have a hard time sticking with it once I feel better. I think I just like the idea of knowing I can fix the issue whenever necessary, but being able to live my life and not be so limited to what I eat when I do feel good. Anyway, I can’t remember if I had these random outbreaks during my first 2 years of long covid symptoms, but I’m on my 4th outbreak since February.. It was a random cold sore on my lip at first, followed my 3 separate incidents with a cluster of blisters on my penis. Just had one clear up not even 2 weeks ago, and another popped up yesterday.

Is this my body trying to get something out, what’s going on? I will say due to being mostly strict with the carnivore stuff, the worst of the EBV symptoms are mostly non-existent; but when I get these random outbreaks, the fatigue and sluggishness briefly comes back for the first couple days of it.

Recently had mono at 27 and while my case was pretty mild (chills, sweats, fatigue, vertigo, and loss of appetite). It still took me out, I could just barely keep up with work and little else.

My EBV infection was recent, likely got it from a date, which bummed me out since I still feel some fatigue but I managed to get to 27 without catching the virus. Initially I thought mono went away but realized that while mono may go away EBV stays for good.

Doing more research I realized about 90-95% of adults have EBV virus, which made me think it was only a matter of time before I got it.

Did more digging and found that certain cancers and immune conditions are associated with this disease, and I thought well unless you are a hermit are you just screwed?

I really hate this, I've been a gym goer, shared food, drinks, made out and thought nothing of it. Now I have this virus :(

I’ve been experiencing uncomfortable pressure in my head that I believe is inflammation. Reason I say this is that whenever I put an ice pack on my head the the pressure seems to slight go away, then after some time it comes back. This has Been going on for 2 years and I actually experienced psychosis which I believe was do to the inflammation. I’ve gotten all types of scans done and everything appears to be normal. The only thing I show back positive for is ebv. Has this happened to anyone? My neurologist also said I had inflammation.

I got mono real nasty 5 years ago. I experienced liver failure, needed surgery on my spleen, and was hospitalized for weeks. I had symptoms that followed for about 3 more months and then slowly started getting diagnosed with new fun chronic illnesses.

My biggest stressor now is my interstitial cystitis diagnosis. I have tried everything conventional and unconventional to treat this illness with no results. Out of desperation I found several studies linking the use of valacyclovir in treating IC in a subset of people that are affected due to reactivation of EBV.

My doctor heard me out and prescribed me valacyclovir 500mg and it WORKED. For the first time in 3 years I've felt relief. I know this is a weird one and I will cross post to the sub for interstitial cystitis but figured I'd put this out there for anyone with IC and persistent EBV.

So, my EBV Charts are very wild.

I know they are for years like that but no one can or want so anything about it.

So my EBV IGG ist Always off >600, always since years.

That is not a huge Problem, i know.

But, my EBNA is always 40. Not more, just 40.

I was pointed to a Immunology Center. The Thing is, my Body controls this Virus with massive EBV IGG but can't get the full Control of it because i can't build up more EBNA.

IgM turns on and off in my Case.

Someone here with the same Problem?

Anyone prescribed for EBV? Did it help? Side effects?