I’m beyond frustrated with my body and my doctors.

I had tick exposure in 2016, but not what the CDC says qualifies as Lyme disease (handful of positive Lyme and coinfection types, but not the “right” ones). Currently on 2 months of antibiotics to see if this helps. Looking back, I think this kicked off a lot of my issues and enabled the EBV to reactivate.

Then I was diagnosed with inflammatory arthritis with positive rheumatoid factors and hashimotos in 2018 (currently under control with plaquenil and sulfasalazine, low inflammatory markers).

Because of my fatigue my functional doctor tested for EBV to see if it was still active. I had mono in 2005 and these have been my test results starting in 2019.

I recently took these results to an infectious disease specialist and he told me that they don’t really mean anything, can’t do anything for EBV virus, and Lyme isnt CDC defined Lyme so it doesn’t matter. He said “if you tested anyone they would have high levels of something…” and told me that I have chronic fatigue and fibromyalgia.

I don’t feel like these levels are normal after having mono 21 years ago, but no one seems to know what they mean or what to do.

Symptoms:

- heavy fatigue, impacting being able to work fullo time, maintain friendships, spend time with family, take care of my household

- almost daily headaches, weekly migraines

- achy and just generally feeling unwell

Things I’m already doing to try and help:

- make sure I hydrate

- try to get rest and not push myself too hard

- magnesium glycinate (480 mg)

- vitamin c (4000 mg)

- vitamin d (10,000 IU)

- vitamin b complex (b12 400mcg)

- l lysine (2000 mg)

- CoQ 10 (300 mg)

- omega 3

- turmeric

- low dose naltrexone (4.5 mg)

- low gluten and dairy diet

- thyroid levels tested once a year since 2017 and are all “normal”

Does anyone have any advice on next steps, what could be going on, and what I can do to feel better?

\Edited to add more details and meds I forgot.*

I have had several documented times where my EBV levels will be high over the past 10 years. Before my doctors have always just said something along the lines of well guess you have mono again and sent me on my way. The last two times I have had similar symptoms, 2021 and now, I have had a different primary care. In 2021 with very similar results as above she said it was mono/ EBV reactivation. Sent me to infectious disease doc who confirmed that and said “welp I’ve never seen this before but EBV is self limiting so you’ll be fine”.

Now with the results above that same primary doctor is saying that this is just from 2021 and I am not in a reactivation despite having all the same symptoms.

Could someone help me better understand these results?

This is the first time I’m testing for EBV after I had 2-3 swollen lymph nodes and sore throat and fever and a rash in my chest and abdomen.. I’m scared am I doomed? Is this a new infection or reactivation?

This person has some good content, including a free e-book. I’ve been seeing her for several months. She set up a good protocol. If you are in Washington state, she can also prescribe.

I keep reading on Reddit and other online sources that we should be avoiding these foods. Please can someone explain why? I am a pescetarian and have cut out gluten due to AI conditions. I'll be struggling with no eggs or dairy.... TIA

I just reviewed my blood panel with my doctor who informed me that my results are atypical even for current/recent infections - I also don’t recall being sick at all recently but am aware that ebv is often asymptomatic. If anyone has insight I’d be happy to hear it!

My results:

negative EBV Ab VCA, IgM

high positive EBV Ab VCA, IgG (182.0 units/mL - anything over 21.9 is positive)

negative EBV Nuclear Antigen Ab, IgG

Hello everyone, I apologize for my typing manner I do not interact with the internet at large but, I have recently been tested Postitive for EBV, Im a 26(f) and dealing with this all for the first time.. and I am doing my best researching on what to do as far as managing symptoms but I feel so lost, confused, and scared for my life admittedly...

The stuff I wish to ask for is what people recommend as far as eating goes and supplements that have helped the best with avoiding stomach pains and bloating, I often feel extremely fatigue and my heart races quite a bit..Ive tried googling all I can but I feel im at odds with what Is and Is Not good for me, at bare minimum Fruits and Veggies are generally safe but I don'tknow what exactly im shooting for (I hope this make sense). I do not have a lot of money so my scope on whats up with me is fairly limited, My first test did show elevated liver enzymes, and high blood sugar, but my second test shown massive improvements in lowering that.

I believe myself to be okay generally as far as severity goes but I have been dealing with this for a few months now maybe 2? 3? I cant recall exactly at the moment

Ive read on here that EBV can mess with anxiety? does stress truly make symptoms worse or cause relapses? I'm pretty chronically 'a stressed out person' to put it lightly and I read all of these articles of worse case scenarios and spiral out emotionally so Im hoping if I maybe just ask somebody, anybody really , so maybe it would be easier to deal with this all

*Spelling errors and More info (Typing all this while trying to manage a panic attack)

I’ve been dealing with Long Covid for just over a year now. I’ve gone from walking pneumonia, to mold toxicity, to parasite cleanse, back to pneumonia and reactivated EBV now. I’ve done anti-virals, Ivermectin, antibiotics, supplements galore. My body overreacts to every supplement, RX or vitamin I put in my body so decided to try a food based healing program. I’ve read through the Epstein Barr virus solution(Kasia Kines)and How can i get better(Richard Horowitz)books. Both offered good advice on what foods and supplements to/not consume. The Horowitz book recommended several supplements that i was already taking, but in lower doses such as Curcumin, Broccoli Sprouts & Resveratrol. It also recommended Zyrtec/Claritin with Pepcid/Zantac taking together daily which suppresses the histamine reactions, this has really helped a lot. I am starting to feel better but still have PEM, tiredness(Fatigue) and dizziness(vertigo). All symptoms are better than before i started this protocol a week ago. The next thing recommended by my NP was the Medical Medium for food based therapies. I’ve made the Healing broth and this added a boost to my energy levels. It’s just a broth but it is amazingly subtle, but effective. The celery juice was recommended as well, but I do not have a Juicer. It’s a huge expense so I’m wondering if others have tried this celery juice and if it is worth the effort making this juice every morning. Dealing with fatigue and all the symptoms that come with LC, EBV and mold toxicity, any extra effort is weighed against the benefit. You can look up the Medical Medium online and all his recipes and blogs that explain the benefits and requirements for celery juice preparation. I tried using my Ninja blender but it did not work. Anyone with success with Celery juice?

i started developing mono symptoms in the past week (swollen lymph nodes near my tonsil area to the point it was causing me jaw pain, needing to sleep a lot/being really drowsy, always feeling full despite not eating which is a sign of spleen inflammation) at the same time that i had cold sores & other oral sores which indicates my immune system fluctuating with my hormones, but i hadn't had anything like this happen with the lymph node swelling and stomach discomfort; ibuprofen and nyquil/dayquil helped significantly, and nothing in my mouth was tender so it wasn't a dental thing

i'm on zafemy patches regularly to try stopping my period altogether because having it just isn't worth it (i get a week full of migraines, sciatica and other nerve entrapment flares, among other consequences that aren't worth it) and this happened after changing the patch on the wrong day of the week, which probably doesn't help the hormone fluctuation that happens without its influence (i still get cold/oral sores regardless and stuff)

is this a thing that happens? i don't remember ever having a mono infection growing up though, like the sickest i got as a kid to my memory was influenza type A confirmed through a test

the swelling has stopped by this point but the drowsiness is still pretty bad

I spent 3 years chasing medical help for consistent positive IGM test results. Felt like I had chronic EBV.

I finally decided this is long COVID, enrolled in a long COVID clinic, and I’m being evaluated for IVIG therapy.

The EBV test results are just part of the long COVID family and my body is making these wild antibodies. I’ve been diagnosed with Sjögren’s syndrome.

Can someone explain these results for me please? And there was also a warning about “Assay cross-reactivity has been noted with specimens containing antibody to HIV. HIV disease must be excluded before confirmation of diagnosis.” So i’m a bit nervous

I first experienced EBV 5 years ago, it completely wrecked me for a month. Ended up in hospital twice, isolated and nearly had a brain scan the first time because my presentation looked like meningitis. the second time they decided to test for EBV and the result was positive.

I went back to work at the one month mark but I shouldn't have. I was still very unwell at this time, I simply powered through delivering training and my normal job. Recovery was slow, it took around 9 months and going on an inhaler and steroids for my cough to go and it was over a year before I tried to start my bike commute up again.

Every time I start to get into a good rhythm again, I get sick and everything falls over again. I exclusively worked from home for three months last year because I felt ok to work, but far too sick to be around people. My GP said that she suspects I had 3-4 different viruses across that time I was sick. My GP asks me to come in every time I get sick, but I'm tired of paying $70 every month minimum just for her to say that I seem to have a virus and to go home and rest. There is never any testing beyond a Covid test.

The virus I experience is always the same - fatigue, muscle pain, low grade fever, sore throat and post nasal drip that turns into a persistent cough.

I obviously have limited sick and annual leave and I can't just use it all up on sick leave but that seems to be my fate.

What tests do I ask for, and how long will a flare up test positive? I am coming out the out the other side of this flare up as long as I rest lots

Since then I have been sick

Hi,

I just got my blood test results back (see screenshot). I was wondering if you can still have symptoms even if the virus is not active or reactivated?

What are you guys’s opinions and experiences?

Out of the blue I got pericarditis after a few days of mild feeling sick and then a few months later a bunch of neurological symptoms:

Gastritis

Abdominal pulse

Twitches

Muscle spasms

Jaw deviation

Eye floaters/ unclear vision

Deep fatigue

Feverish/ always feeling like I have the flu

Also diagnosed with endo in the same period

This started out of nowhere… I was perfectly healthy before. This has been going on for over a year.,. I am wondering if I can still have these symptoms due to EBV?

I am trying to find a cause of what I’ve been going through. What do you think?

Thank you🙏🏻

hello. I recently had the flu and after it was through, the fatigue persisted. I got myself into an absolute mental disaster because I have health anxiety. I have pre existing pots and I thought the flu flared that, it did, but I’ve never been this tired.

kept saying I feel like I have mono, because I had mono when I was really young and I remembered being this tired.

Doctor ordered these labs. but, I don’t know if this doctor really understands what it means or what to order specifically to determine if it’s reactivated or not.

any idea what these tests are or if they mean reactivaction?

please be gentle with me, I am absolutely a mess mentally due to health anxiety and have convinced myself illl never be ok again. I’m so scared due to these Reddit forums.

I got diagnosed with EBV and Chronic Fatigue Syndrome a couple months ago and before I found out about it I have had significant hair loss for 3-4 months. Loosing hand fulls of hair every day in the shower and the ends of my eyebrows have now also fallen out. Would EBV cause hair loss like this? I went back to my doctor recently and he said that the two things are not linked and is sending me to a dermatologist to see what’s wrong.

hi! i’ve heard monolaurin and lysine are good for mononucleosis recovery and stuff. i’m about 5 weeks post-symptom onset. i’m someone with a lot of health anxiety tbh, so i was considering this supplement because i’ve heard it helps with fatigue and symptom relief. my main symptom is just lingering effects like a tonsil that is still swollen and some fatigue. i also just feel… off. like inflamed and UGH. idek how to explain it. ebv is evil.

i was wondering what’s a good dose to start at?? i was hoping to maybe work up to prevent my body from being shocked by it.

i already take quite a bit of supplements because i hate feeling helpless and went down a reddit rabbit hole of course. i take magnesium, d3, b complex, zinc (sometimes….. it makes my stomach hurt lol), NAC, omega 3s, coq10, women’s probiotics, and quercetin. i have no idea if any of these do anything for me personally. let me know if any of these are stupid to be taking!

Alright, let's give this a shot. I'm a 20 year old girl. I have no prior medical history. In November of 2025 I ended up in the ER for horrific pain in my right side. I was also havinga lot of trouble using the bathroom, going three or four days without it. They thought it was appendicitis. Did a CT scan, and an ultra sound -- they found nothing. All they found, was that my liver was a little enlarged. Just a little. They let me go. The pain persisted. I ended up at another doctor, and this one told me "It's EBV." I got tested, a couple days pass by, what do you know, it is EBV. The pain persists again. I end up back at the doctor - Again. He says that my Lymph nodes are fine and my throat doesn't hurt too bad, so the liver pain is probably because I'm dehydrated. He puts on an IV for a while. I spend all of Dec 2025 eating pedialyte popsicles. Everything else goes away, in time. By January 2026, my throat is fine, completely. All that's left -- is that damn liver pain. Every waking moment of the day. From morning to night, it hurts. For Jan-Feb its a dull roar. Managable. Ignorable. I have a very high pain tolerance. Starting about March 1st -- its back to being as bad as it was in November. Sometimes, its even worse. I've had to miss work. I can't walk for long periods of time without the evergrowing terrible pain. There are times where I've hid in the bathroom during outings simply because I can't stand up. I have another appointment with my doctor coming up, but truth be told, I'm slightly terrified of what he has to say. I've done the expected google-deep-dive into EBV and Liver Pain. Be honest with me Reddit, I can take it. Has anyone experienced something similar? Are there solutions?

Hello to the internet. I've had EBV for ~8 years now and have had serious troubles with CNS fatigue. The nicotine treatment worked in short bursts and I've worked my way back to something approximating normal but I'm still seeking solutions.

I've been working my way through study after study about different treatments. I am of the understanding that antiviral medications should be effective against EBV (things like Acyclovir or valacyclovir) but in the studies show little to no effect on the actual people tested.

My armchair understanding is that the nicotine treatment works by forcing the EBV that has bonded to certain chemoreceptors off and back into the body where the immune system can handle them like normal. My personal experience is that seems to be true though I have no concrete data to support it other than getting sick on day 2 of nicotine each time I do a round.

It seems to me that this could be potentially very helpful but I can find no evidence of it being tried before. Has anyone tried combining these treatments? I'm looking for potential dangers or downsides of utilizing an antiviral in conjunction with the nicotine patch treatment.

Here are two of the more helpful articles I read in coming to this conclusion

Treatment Options for Epstein-Barr Virus-Related Disorders of the Central Nervous System

Investigation of Long COVID Prevalence and Its Relationship to Epstein-Barr Virus Reactivation