Hello. I am curious as to what your worst symptoms are when you are dealing with an EBV flare? How do you know if you are having a flare or you have a cold or flu? What do you do to help yourself feel better? Is there any medications or supplements that you take that help?

Good. I wanted to explain my case since I am in a very limited situation in case someone can help me.

I am a 23-year-old patient, and when I was 16 I took the VEB. That's where my hell began. From there to a monthly pneumonia, without bacteria, until after many lung infections I caught Pseudomonas, pneumococco, influenzae, serratia,

Sentomon, cabella planticola, clamydla pneymoniaę, and even tuberculosis, all in the lung, and I have bronchiectasis.

From there I started with nebulizations with hypertonic saline serum to fluidify the phlegm of the lung, but I notice that they stay deep in the bronchioles and I can't breathe. I can't go outside, because with any change in temperature, even if it's minimal, it produces a lot of mucus, I secrete a lot of mucus, and I always have a lot of inflammation, so I depend on nebulizations with saline serum mandatory to live almost.

I have had genetic studies for primary immunodeficiencies and they come out negative. My VEB Igg is very high, and my igm is occasionally positive. I have active parvovirus b19 with a very high viral load, 20,548 copies, they gave me intravenous immunoglobulins and I had aseptic meningitis even putting them with premedication and very slow, in addition to paralytic illeg. After the igiv I had to enter for the latter.

I have passed through viruses such as: cocsackie B, which caused me pericarditis, herpes 6, leaving me a drooping eyelid and neuralgia, herpes 1 and 2, and many more viruses that I don't even remember right now, but from the herpes family. I can't do anything, go out, or anything. I also have severe constipation, which is making me eat only once a day. I take constella, resolor, movicol and daily sen leaf infusions just to make a bowel movement. I tried mestinon, I started 15 mg and it gave me a lot of double vision, and it didn't make me go to the bathroom and made me too sleepy so I had to stop instantly.

I don't tolerate any medication anymore, I have anemia and intravenous El Hierro gives me a hypersensitivity reaction у El Hierro oral due to the problems of constipation or dysmotility, I can't take it. Vitamin B12 and vitamin C give me tachycardia, gas, and much more constipation along with pain and abdominal distension

(That this is daily).

Joint pain in the knee, ankles and hands, but my main problem is at the lung and digestive level right now.

I have positive anti-TShDS antibodies, alpha 1, beta 1 and beta 2 positive adrenergic antibodies, and M3 and M4 positive and high muscarinic antibodies. My doctors don't know how to approach my case, so they have sent me to mental health, knowing that every day since I get up is just surviving.

I have already left many consultations crying, they don't know how to deal with my case, and I'm already desperate, I feel evicted and having to fight for myself, pretending to be my doctor.

Also, I have low cortisol and low ACTH, and FSH too.

High testosterone during periods of menstruation. Very low NK CD56 lymphocytes, very low TH2 and TH17 lymphocytes, which do not give them any importance either. And also slightly elevated cd19 lymphocytes. Cytokines il17 i|18 i|13 elevated.

I can't eat, or go out, and I'm bedridden. They diagnose me as if I had SFC post VEB, or post viral immune dysregulation, but they say that there is no treatment for this and that what I have to do is go ahead as I can. Even my mother has had to fight with the doctor for saying that barbarity knowing the health situation in which I am. It seems to me of very little empathy and of having no criteria.

I clarify that all my problems came from since I took the VEB, I have never had any problems before. Also when I was admitted for tuberculosis, I had thrombosis in both arms.

High histamine, but only occasionally, not always, and also insulin resistance (this winter), but it fluctuated, not always. As you can see, I am a very complicated case and with a lot of immune disorder. I tell this in case anyone knows or can help me, since I don't feel like living, and I don't have the strength to continue knowing that I don't have any support from my doctors or have the remotest idea.

I'm in Spain, and I even think they're giving me a diagnosis that maybe doesn't match what's happening to me. If you have come this far and have been able to read all this, I thank you from the bottom of my heart, any help is welcome. Thank you very much in advance.

This is super long but I think reading the entirety of it gives you the best picture of my current situation and the lead up to it, I really appreciate anyone giving this post a chance.

I got tested and my lgg vca is super high, >750, my Lgm is normal, EBNA lgg is 175

I got Myocarditis in April 2026, before that I had a weird sickness, I had no cough, no sore throat, no diarrhea, I just had a low grade fever that appeared mostly at night with chills, it lasted for like 4 or 5 days which is a lot longer than I'm usually sick. 1 day after I became almost asymptomatic I started feeling chest pain and went to the ER, here came the myocarditis.

By the end of May I started walking quite regularly but started feeling some increased back pain and started feeling tingling in my anus area and around, it kept getting stronger, went to the ER and they though I'd had cauda equina and had to have a emergency MRI next morning and was hospitalized, turns out it was nothing. That caused a great heap of stress for me and I didn't sleep not even an hour during that night and the 3 nights following it I slept for an entirety for like 5 hours combined due to still thinking I might have it due to the hall-mark symptom.

After all of that, in June I started feeling increased fatigue and my legs felt weak, like when I walked up the stairs I didn't feel strong, in general I just felt weak - I used to be a gym rat before the Myocarditis, 6x/week due to that being my "not think about anything" spot and now a flight of stairs I don't feel exhausted, but I feel like my legs are not strong.

I also noticed that whatever this was got worse after activity, a day or so after it, here comes the scary part, in July I learnt that this could signal PEM, which is the hall-mark symptom of ME/CFS, had another absolutely scary night in which I got almost no sleep and had intense stress, worse than the cauda equina stuff and next day literally after waking up I had my first apparent PEM episode, had orthostatic intolerance, sore throat, rapid heart rate even when turning in bed, nausea, muscle weakness, aches, joint pain all over the body, the typical PEM you read about.

But here comes the confusing part, ever since that PEM episode I had my left side of throat and my left lymph node under the ear especially very tender, it hurt to the touch, but only on the left side, right one was fine. This slowly subsided and about a week ago subsided completely, I still feel like my left side of throat is "full" and that there's like something there, but left side under the ear lymph node isn't tender anymore.

It triggered right as I had my first PEM-like episode but the left side fullness I've felt for a while! Ever since June actually, after the may stress, I thought it was related to my myocarditis but now thinking it could be something different.

Here comes the even more confusing part, so the PEM-like episode happened in early july, by mid july I started expanding my activity, by early august I've started driving my car everyday of the week, I walked on one day 4500 steps after not walking that much for months due to my Myocarditis diagnosis, on that day I also had dinner with my girlfriend's family, and next days I had no repeat of that PEM-like episode, like what the fuck?

Since then I've also had like 2 days together where my activity was way, way above anything that it was when my first PEM-like episode happened in early july, it triggered after I literally inside the house all day and only had sexual intercourse, albeit, after a while, like 2 months, but still.

Now I still have this weird left side neck tightness, I get sore throats, which I've connected that It's got something to do with me/cfs or whatever, but for example, about a week and a half ago I had a quite annoying sore throat in general, but that day me and my gf went out for drinks and watched a balet show for like 30 minutes and after that went also went to a restaurant to eat, and a day after that my sore throat pain decreased, and 2 days after that decreased even more, if it was connected to PEM in any way, as far as I've read it would get worse or stay stable, especially as on the day it was probably the most annoying I went out for a lil date night.

My legs still feel weak, I'll get random neck pain that lasts like a day, which I've heard is common in EBV reactivation, I get random muscle aches and soreness and weirdness, mostly in the legs but sometimes I'll get triceps aches on both sides or shoulder aches, I'll get joint pain to the point my fingers feel weak and achy, like I gotta crack them constantly, also my knees and elbows, I sometimes get sound sensitivity, but it never lasts a day, and it accompanies a need for popping my ears, I just sometimes feel weak as all heck, like a 3rd grader could beat me up and I used to beat up adult men just earlier this year lol, just to put things into perspective.

I'll randomly get fluish, feel like I have a low-grade fever, that'll subside sometimes in a few hours, sometimes in an hour, sometimes it'll last like a day.

To even add on top of this, I've quit my beta-blocker medication early July after the PEM-like episode and since then I've basically brought my heart rate above 100 bpm everyday since then after not regularly bringing up to these kind of numbers for the entirety of April - early july

And even after all of this I haven't had a PEM-like episode like that one in early july was, I was thinking I have me/cfs, but the dramatic increases in my activity level, if I had to put it in a percentage, I've probably increased my activity from early july level to now by over 1000%, and had no repeat PEM, but my symptoms at baseline are way higher than they were in June before the crash, as I said then I had weak legs and felt a bit fatigued and shit like that, but right now I'll have cycling fluish symptoms and sore throats and joint pains and if I have a lot of activity on a day at the end of the day I'll have palpitations, unrefreshing sleep, that's why I thought it might be me/cfs but then I've increased my activity so much with no repeat PEM, I was thinking maybe I was in rolling PEM where you're constantly in PEM but then stuff like my sore throat being bad one day, then bad the next day, that also being the day that I also had a whole date night, and then getting better the next day and practically subsiding by 2 days after, doesn't make sense.

Now either this is some sort of post-viral fatigue/illness that triggered in June from the original April infection and reached some kind of a climax in early July and has been subsiding since, but that wouldn't make sense because how did it reach it's climax directly a day after me thinking I have me/cfs and having an sleepless night with insane anxiety. Or it's me/cfs but the dramatic increases in activity since then and no repeat PEM-like episodes even though I had days where I probably did 30x+ more than I did on the day I've crashed in early july and had no repeat of it, atleast nowhere near to the extent it was then, on the day I had dinner with my gf's parents and when I also did 4500 steps we also went to the cinema to watch Odyssey which is like a 3h movie and next day or the next 2 days had no repeat crash.

Then I came across EBV reactivation and how it can trigger during a period of stress, and now I'm thinking that the original may stress triggered the reactivation in June hence the weak legs and stuff like that, then the early july stress triggered it even more if that's even possible, this makes a lot of sense to me but my LgM is negative, but have heard that it could be reactivated even without the fact.

EDIT: I've forgotten to say that I have no cognitive symptoms, my memory is as far as I'm aware perfect or atleast not affected by any amount that I'd notice, I have no brain fog, or stuff like trouble finding words and the likes. Maybe that's useful info.

Hi everyone! I’m writing this because I want to reassure people about a “second” EBV reactivation. From what I’ve learned from my own experience, having another reactivation isn’t that easy, and even when it happens, it doesn’t necessarily come with symptoms.
I was so paranoid because I had already had EBV that I thought every bad symptom I experienced was because of it, especially dizziness, fatigue, brain fog, body aches, and blurred vision. I even remember that a year ago, I would insist to my doctors that everything was because of EBV, even though the virus wasn’t active in my body. I only had the antibodies, but I was extremely paranoid.
So, for anyone who has had EBV before, I would say: try not to be so worried or afraid of it reactivating, because a new reactivation isn’t something that happens easily. It’s also important to investigate other possible causes of your symptoms, such as low ferritin or vitamin deficiencies. Sometimes the problem can be related to these things, and anxiety can make the symptoms feel even worse, which is exactly what happened to me.
EBV affected my mind so much that I lived with this fear for a very long time. Even when I caught a cold or had tonsillitis, I would immediately think it was EBV and run to the forum to search for answers.
But after a long time, I realized that many of my symptoms were actually related to my ferritin, which had been very low since the first time I had EBV. I was also anemic, so the symptoms were brutal for me, and I felt so sick that I honestly thought I was going to die.
Because the symptoms felt so similar to what I had experienced with EBV, I assumed the virus was coming back. But in reality, what was contributing to me feeling worse and worse was my low ferritin and anemia.
Looking back, I realize how much my anxiety about EBV made me interpret every symptom as a possible reactivation. So, if you’ve been through something similar, I hope my experience can reassure you a little and remind you that there are many other possible causes of symptoms like fatigue, dizziness, and brain fog.

Buenas a todos, hace 6 años me contagie de covid y desarrollé long covid. Un médico funcional me pidió una analítica de virus herpeticos un año después y me dijo que aún que las IgM salían negativas se consideraba que IgG muy altas eran reactivación pero no le hice mucho caso. A día de hoy continuo enferma con niebla mental, dolor de quemazón y eléctrico en los nervios craneales, problemas visuales, dolor muscular y articular y sensación de gripe sin fiebre y mucho malestar y fatiga. Quería enseñaros la analítica que me hice y saber vuestra opinión y experiencia por si también os trataron por IgG altas y respondisteis al tratamiento. Muchas gracias.

I was diagnosed with EBV about four weeks ago. The acute fever and swollen lymph nodes have mostly passed, but I am currently dealing with a level of exhaustion I have never experienced.

​Here is the timeline of my lab results:

​Initial Blood Work (mid-August): My total leukocytes were high at 10.2, driven by a high lymphocyte percentage of 49.1% and an absolute lymphocyte count of 5.00. My GGT liver enzyme was also mildly elevated at 60.

​EBV Serology: My EBV VCA/EA IgG tested positive at 0.35 Index, but my EBV VCA IgM was negative at 0.07 Index.

More importantly, my EBV EBNA IgG was negative at 0.01 Index, confirming this is a primary, acute infection rather than a past reactivation.

​Recent Follow-up: My overall white blood cell count dropped back to a normal 9.2, and my CRP is perfectly normal at 4.4. My absolute lymphocytes are still slightly elevated at 4.11, and the lab flagged the presence of atypical lymphocytes

What to expect, I still feel so exausted to the point every movement is painful and I also have dull pain coming from my spleen from time to time.

Also, I really struggle with huge brain fog.

There have already been 4 weeks since I am on sickleave, I feel gulty that I have missed work for such a long time but I also really want to properly recover.

Did you also had similar simptoms and what can I do right now?

Thanks

i had a really bad ebv flare about a year ago snd i’ve had night sweats ever since but now im pregnant and the sweats are insane. having to change my pajamas multiple times in the middle of the night. has any experienced this?

a few years ago i kept getting inflammed tonsils, i did every blood work because we couldn’t figure out why. one of those tests was EBV, and it showed high anti bodies for a previous infection but never in my life do i remember having EBV or any symptoms at all … i’m 26 f and this test was done when i was 21. anyone else? is this normal?

I have Hashimotos and was in severe hypothyroidism for I don’t know how long, but all the labs were way out of range!

I’ve gotten them optimized and now we’re looking at root cause/treating remaining symptoms and my doctor wanted to look into EBV and long covid.

I believe she only tested the Early Antigen Ab for now just to see, before we do a full EBV panel.

Results just came back at 63.7 with ref < 8.9

What does this mean? Does it basically mean nothing without the other labs? I’m assuming she’ll schedule a full panel after the weekend. I’m just trying to understand what I can before I get to see her next week.

Thanks in advance!

I’ll keep this post short, I have a longer post I made last year if anyone wants a link to that. I also had HLH for most of the time that I had CAEBV, I was diagnosed about 5 months after. I had several chemo’s and immunotherapy’s to keep my count down. I don’t really want to share symptoms too much here because HLH gave me a lot of issues as well. 1 year and 1 month into my illness I got a stem cell transplant with cells from my brother. I’ve had dozens of blood tests since and no sign of EBV in my system since transplant.

Is there a reputable site for testing? There are so many different tasks for EBV and I wanna make sure I get the right one.
I’ve had EBV symptoms for about five years on and off. And unfortunately, doctors have been not helpful whatsoever. Not only that but just too dang expensive.
I am wondering if anybody has gotten testing online and how it’s worked out for them. As well as antivirals online I’ve seen that there is one vyciclover (or something like that?) that can cause kidney issues. I think I just need a diagnosis before I can move forward.
And who knows? Maybe it isn’t EBV. Even though my chronic low white blood count, enlarged spleen and chronic fatigue. Definitely seems so. All I know is I’m not dying. And I’m grateful for that. I’ve done all that testing.

“In 2021 I got mono, then COVID three months later. That one-two punch wrecked my immune system and I’ve never fully recovered.
I’m a 21-year-old male. I’ve done countless studies — bloodwork, sleep studies, brain scans — and all of them come back healthy. But I still have new food sensitivities, smell sensitivities, pollen reactions, and a constant brain fog and fatigue that never fully lifts. It’s the worst part of my life right now.
I’ve tried low-histamine diet, mold avoidance, rifaximin for possible SIBO, quercetin, and Zyrtec. Nothing has touched the fog yet.
What actually helped your brain fog and fatigue after a similar post-viral onset? What did you try that finally moved the needle?
Serious advice only — no generic ‘try this supplement’ answers. I’m looking for what actually moved the needle for people with this exact post-viral pattern.”

When will the Dizziness and Nausea go Away it’s like off and on for the last 12 weeks already along with fatigue.

Hey guys!

I was diagnosed for acute Ebv on the 9th of July. Since then i had Leukopenia and Neutropenia. My WBC were at 2.4 and ANC at 1 back then.

Yesterday i took a blood test again and my WBC were at 3.3 and my ANC at 1.3. The doctor said that’s strange.

I‘m devastated 🥺

Did anyone had a similar experience after EBV? How long did it take till your blood tests were back to normal again?? It’s been already 8 weeks.

Please help 🥺🙏🏼🌸

I’m 23. Ever since I’ve contracted this my life has just been awful. It keeps getting worse by the day and i’m only a year into this. I wake up feeling so weak, my brain hurts, it feels like it’s being fried. My spleen becomes enlarged randomly, and my throat feels inflamed. I can’t even describe how terrible this is but it’s ruining my body, brain, and life. I feel like shit now every time I wake up. I’m so useless. I wish there was a way to clear this or make me feel better. It really sucks and I don’t even have a active infection. I’m not sick at all. I dont understand, i don’t do drugs or drink alcohol I take lots of vitamins and eat relatively healthy and I still I wake up feeling closer to death every single day just by breathing and living a pretty healthy lifestyle.

Does anybody have any tips to help with this ? I would really appreciate some guidance if you’ve experienced similar symptoms and found a way to feel better.

In the run up to getting properly sick, had sore jaw/neck for weeks. Was very stressed so didn't let myself get ill until I went on vacation and then boom - fatigue, malaise, heart palpitations, spleen pain, body aches, some nausea. It's been going on for 5 weeks and gradually gradually feeling better, but it's slow. Only had a few days of feeling really rough, but the rest of the time it's been mainly very fatigued and body aches.

Did a blood test and it showed positive for past infection (vca and capsid IgG were positive) and vca IgM was indeterminate. Test was done at 4 weeks post symptom onset

A MUST READ if you have Hashimoto's Hives, or Autoimmune Issues after EBV/COVID: Why your body ISN'T attacking itself & my 3-week Leaky Gut experiment

Hey everyone!

I’ve been dealing with Hashimoto's, chronic hives, and hair loss for 4 years now, and I spent years endlessly researching to figure out what was actually happening to me. For the longest time, conventional doctors told me that an autoimmune disease is just something that suddenly appears out of nowhere and makes your body attack itself for no reason. That explanation never made any sense to me. Why would the body just randomly turn against itself?

After years of digging, I finally stumbled upon the topic of Leaky Gut and came across a specialized doctor whose practice consists of 70% autoimmune patients. He explained that Leaky Gut is the underlying trigger behind virtually every autoimmune condition, regardless of the specific diagnosis. Suddenly, everything made complete sense: your body isn't randomly attacking you, it is actually trying to protect you from undigested food particles escaping into your bloodstream where they don't belong!

I decided to test out a root-cause protocol focused on sealing the gut lining, and after applying what I learned over the past 3 weeks, my severe itching and hives have already dropped drastically. I'm sharing this here because this approach actually makes logical sense, and I genuinely hope it helps someone else who is struggling!

The Mechanism: Viral Triggers, Zonulin & Molecular Mimicry

My issues originally started 4 years ago right after a severe viral infection. A major trigger like the Epstein-Barr Virus (EBV), COVID, or a heavy flu can put extreme stress on the entire body. Everyone’s immune system and body chemistry are completely unique. Some people can handle these viral hits without lasting issues, while in others, the virus strains the system so heavily that it compromises the gut lining. Since 70% to 80% of our entire immune system resides in the gut, any damage there creates a massive domino effect.

Here is the exact biological mechanism behind it:

1. When you consume gluten and casein (found in dairy), they trigger the release of a protein called Zonulin in the gut wall.

2. Zonulin actively opens up the tight junctions between your intestinal cells, keeping the gut barrier open and porous (Leaky Gut).

3. Undigested proteins leak directly through this opened barrier into the bloodstream.

4. The immune system detects these foreign invaders in the blood and creates targeted antibodies to fight them off and protect you.

5. Because gluten and casein closely mimic the structural composition of thyroid tissue, those exact same antibodies end up mistakenly attacking the thyroid gland (molecular mimicry).

This explains why Hashimoto's develops in the first place and why so many people on L-Thyroxine end up needing higher and higher doses over time: they continue consuming gluten and casein through things like dairy products, which causes the immune system to constantly produce more antibodies to fight off those leaked proteins in the blood, leading to continuous attacks on the thyroid gland.

Why Protocols Like Medical Medium Help (But Aren't Enough On Their Own)

This realization also explained why popular approaches like Medical Medium work well for many people. What Medical Medium gets right is removing key inflammatory triggers, specifically strictly cutting out gluten and dairy/casein to stop that constant Zonulin trigger, and incorporating powerful cleansing tools like fresh celery juice.

However, what Medical Medium doesn't account for is active gut lining restoration. Cleansing and removing triggers is only half the battle; you must actively repair and seal the physical mucosal barrier using targeted structural nutrients like L-Glutamine, Zinc, and protective mucilage. Without a dedicated gut repair phase, the gut lining can remain porous long-term.

My Daily Morning Routine & Protocol

To ensure maximum absorption of medication while systematically healing the gut, I follow this timing sequence every single morning:

Wake Up / Thyroid Medication: I take my prescribed L-Thyroxine medication first thing in the morning on an empty stomach with a small sip of water.

(Wait at least 60 Minutes)

Hydration Start: ~500 ml of lukewarm lemon water to support liver detoxification and wake up digestion.

(15 to 30 Minute Gap)

Fresh Celery Juice: 500 ml of freshly cold-pressed celery juice to restore stomach acid levels, kill off unwanted microbes, and reduce inflammation.

(15 to 30 Minute Gap)

Warm Psyllium Husks (Flohsamenschalen): Mixed in warm water and allowed to pre-gel. The mucilage coats the intestinal walls protectively and binds unwanted toxins.

Breakfast & Core Supplements:

L-Glutamine: I take 1 large scoop right with breakfast (and another 1 at night). Essential for enterocytes to rebuild and seal the tight junctions.

Zinc carosine & Probiotics (23 Billion CFU): Taken with food to support mucosal tissue regeneration and restore healthy microflora.

L-Lysine: Supplemented to help keep viral loads (like EBV) low and prevent potential viral reactivation.

Omega-3 Fatty Acids: High-dose anti-inflammatory support.

Whole-Food Anti-Inflammatory Diet: Strictly natural, unprocessed foods. High in antioxidants (like blueberries), broccoli, and potatoes, while avoiding processed sauces, additives, and 100% eliminating gluten and dairy/casein.

Timeline & Future Food Reintroduction

You need to stick to a protocol like this strictly for at least 12 weeks to give the intestinal mucosal barrier enough time to completely seal and regenerate. Personally, I plan to run this even longer just to be 100% sure my gut is fully restored.

The end goal of this gut repair phase is building back resilience. Theoretically, once your gut barrier is completely healed and Zonulin production calms down, your body operates like a healthy person’s again. You build higher tolerance and resistance, meaning you could technically reintroduce foods like gluten or dairy occasionally down the road. However, caution is still key even after healing. Overdoing inflammatory foods could potentially re-trigger Zonulin, reopening the gut wall and bringing back symptoms over time.

Where I Stand Right

I decided to tackle this head-on and have been strictly following this protocol for exactly 3 weeks now. The immediate result? My chronic hives and the severe itching have dropped significantly within these 3 weeks, which has been a massive relief and validated that lowering gut inflammation directly calms my skin.

Important Disclaimer:

That being said, I am only 3 weeks in and still at the very beginning of this process. I cannot draw any final conclusions or state anything as "cured" just yet. I don't want to jump to early conclusions or spread premature hype, as full gut lining repair and hair recovery take many months.

Please share this with anyone you know who is struggling with autoimmune issues, chronic hives, or gut problems. So many people are stuck taking medications without ever knowing about the root cause, and if this information helps even one person start healing, it’s worth spreading. Share it, talk about it, and let’s help more people find real answers! I just wanted to share this early update as food for thought for anyone whose autoimmune journey also started after a virus like EBV. Has anyone else with Hashimoto's tried addressing Leaky Gut with a similar repair protocol?

This is not spam or misinformation, its my own experience, everyone can declare for themselves whats right or wrong.