r/EBV

I got tested for EBV 5 years ago and I just found the results again. I have two results that are almost off the charts.

primary at the time refused to tell me anything and no one else would because of insurance. I couldn't afford to go out of network. I've been unemployed on medicate not even disability, and inflamed since.

If there's anyone that that can get me out of this please let me know what to do next. I keep telling new primary doctors about the test but they just blow me off but I finally have the test.

Hi peeps,

I've done a routine blood test and wanted to get an EBV test check as well. Reason being, I have long-term nasal rhinitis; wanted to take a preventive test to have it checked. My GP said it is OK to have it checked but didn't strongly recommend it.

Should I seek an ENT doctor's endoscopy first before ordering EBV test or the other way round? Don't wish to spend extra if unnecessary hence the ask.

Thanks.

i originally went to the emergency room for bad ibs symptoms. i’m also recovering from a restrictive eating disorder, and i thought that was causing most of my symptoms. a few blood test later showed that my alt was 200 and my ast was 80.

due to my ibs flaring up so badly and many calls being made to the on-call nurse since i wasn’t feeling well, they admitted me for further testing. one of those was for mono, and it came back positive. i was very surprised at first and it caught me off guard. but after a lot of thought, everything made sense: increased fatigue episodes and headaches, my heat intolerance was way worse, ibs flaring up, dizziness, and probably a lot more that i can’t remember. however, i didn’t have any “flu like” symptoms like a lot of other people have.

this has been going on for a month or so now. i hope it gets better soon and we are following up with bloodwork in about two weeks. i’m also seeing a new gi specialist, which should help. i’m also already immunocompromised, which makes the situation a lot more hard and complicated.

if anyone has any advice, it would be greatly appreciated. what a whirlwind of 72 hours this has been…i’m just glad to be home and that everything is ok 🩷

What do you all think of getting the shingles shot .
I wonder if it will help or make me reactivate?

Does anyone have any leads on doctors in Maryland that can help with EBV-associated CFS? I'm willing to travel and pay out of pocket.

The doctors I've found here for the area are either child or young adult specific (I'm 42), retired, or have active disciplinary actions.

My history is 27 years of sickness (since I had mono at 15) and lymphoma survivor (a type with known EBV association). An ID doctor flagged my abnormal EBV blood work (IGG EA beyond reference range for many years) but he doesn't specialize in EBV. My oncologist thinks the bloodwork isn't significant since my PCR is negative but I beg to differ. And I've been to 2 naturopaths with bad experiences. I worry an ID doctor I have ID'd in Baltimore will dismiss me based on a negative PCR but will try - I'm not sure ID is the right specialty. I have a neurologist appt scheduled but it's a ways off and I have no idea if they're knowledgeable or it will be another disappointment visit. I recently got valtrex through my PCP and it's been very helpful, but they're uncomfortable with a high dose for a long time. Seeing other people's posts on their experiences is also discouraging. I just made the CFS association after all this time and very rough journey, on my own.

Thank you

Hello all, I am a severe health anxiety suffered and am looking to get your thoughts on whats going on. I am a 30 year old male, and had Mono when I was 15. 2 Years ago I was having elevated white blood cells for a while and my doctor ordered an EBV test just to see what was going on. All 3 titers on the test came back positive:

ebv Ab vca, IgG u/mL - 276

ebv Ab vca, IgM u/mL - 51.3

ebv nuclear antigen Ab, IgG - 148

I made the mistake of googling what it meant if all 3 titers were high and it led me down the rabbit hole of CAEBV. I had panic attacks and was convinced I had it. I eventually ignored it got over my fears but today my doctor ordered the EBV titers again as I recently had the Flu 3 weeks ago and lost some weight from it. Im assuming he just wants to be thorough but It brough those feelings of panic back. If the IgM comes back positive again do I have CAEBV? I cant seem to find how many cases a year get diagnosed but it seems rare. Thoughts?

Has anyone come across this pattern before, and what did you find out was the cause? I had 15 days of a bad sore throat and fatigue, recovered for 10 days, then became extremely ill for the past 4 days with fever up to 104, sore throat, swollen lymph nodes, etc...

Doctor ran tests on the 4th day of this recent sickness including the EBV panel (they did NOT include the early antigen, which I'm reading is key):

EBV Ab VCA, IgM is less than 36 (below Ref),

 EBV Ab VCA, IgG is 176 (elevated)

 EBV Nuclear Antigen Ab, IgG is less than 18 (below ref).

So, I'm reading that I could be in some sort of transient post-acute window before the nuclear antigen has turned positive, or I have some sort of autoimmune disease that is stopping me from making these antibodies?

Hi everyone

my name is Hannah and i am 23 years old.

I've been dealing with fatigue after an EBV infection for about 5 months now, and I'm looking to connect with others who are in a similar stage of recovery (roughly 3–8 months after the initial infection). Please do not write me if its shorter or longer than that. Thanks ;)

I'd especially love to hear from girls between 18 and 25, since I'm a girl myself and think it might be easier to relate to someone in a similar age group.

It would be great if you're from Germany or middle Europe, as it's easier with time zones.

It would be nice to share experiences, talk about recovery, and support each other with a positive mind. 💙

Hannah ;)

Can anyone help me determine if I have any form of reactivation?

V VIRAL CAPSID AG (VCA) AB (IGM): <36;
EBV VIRAL CAPSID AG (VCA) AB (IGG) >750 H;
EBV NUCLEAR AG (EBNA) AB (IGG): 171.00 H;
EBV DNA: not detected;
EBV EARLY ANTIGEN D AB (IGG) U/mL: <9.00

Is VCA IgG fluctuating during our lives? Does the number say anything about how significant the EBV levels are or were in the past?

Claude AI says : Typical patterns:

• Someone who had EBV decades ago and fully resolved it: IgG might be 20-40 — just above the reference, showing immune memory
• Someone with chronic/reactivated EBV: typically 50-150+ — showing ongoing immune engagement

Your 124 at reference <16, 8x the upper limit is notably elevated

• Places you firmly in the chronic/reactivated category
• Not just "had it once" — your immune system is actively producing large volumes of EBV-specific antibodies
• Consistent with what the ME/CFS literature describes in patients with herpesvirus-driven fatigue syndromes

Is this info accurate? Can it be so easily detectable in blood? I know we all know about EBV from the books, and not necessarily need more tests, but it's nice to see those things on paper.

Hi All

I’m looking to see if anyone has any tips for getting over post-viral fatigue from glandular fever (EBV) including how much of the day to rest, anything that helps achy legs, and vitamins/ foods that could be useful? I know that this may not get the right audience as those who have recovered successfully may not look at this thread anymore.

I first got symptoms (sore throat, mild fever, feeling unwell, fatigue) around 22-24 April and was diagnosed on 28 May. Annoyingly, I went for a long walk, and did a coupe of 5k runs 3 weeks after I first got ill as most of my symptoms went and I just felt a bit tired, thinking I had a bad cold and would get back into things (I used to run 40-50k per week). I hadn’t been diagnosed at this stage as that may have changed things for me.

Since the end of May I’ve been up and down with fatigue, mainly achy legs and low energy levels but have been able to socialise and do some normal life activities but it has still impacted me a lot. I’ve also been going through a break-up which happened a few weeks before getting the illness and the fatigue is definitely making me more anxious. Annoyingly my outlet for anxiety and sadness was running so it’s taken a bigger toll on me mentally.

Any help or support is welcomed and thanked! I know it won’t be a quick fix and compared to others I know I am lucky I can still do some activities, but want to do all I can to try and beat this.

I’ve been thinking about how some people, myself and family members included, seem to feel different after EBV or mono. Not just tired, but more reactive overall.

I wrote something exploring the idea that a strong viral infection may leave the immune system in a more activated state, which could affect cytokines, sensory receptors like TRPA1 and TRPV1, and the body’s stress response. I also touched on liver function and retinoid handling as a possible piece of the puzzle, which may keep the reaction loop going.

I’m curious if anyone else has noticed things like:

• food sensitivity
• skin or scent sensitivity
• feeling anxious
• trouble calming down or feeling exhausted after any type of stress
• feeling like the body never fully returns to baseline

Would love to hear if this resonates with anyone else. Trying to piece things together. Thank you!

https://medium.com/the-food-mood-link/why-so-many-people-feel-more-anxious-sensitive-and-stressed-after-covid-ebv-and-other-immune-a51eab869a94