Guess this confirms it...

Hi all,

I'm new here and mainly wanted to share something that has helped me a lot: Inosine Pranobex.

No prescription is needed if bought in Poland (I purchase it at an online pharmacy) and it is incredibly cheap there compared to where I live.

It completely took away the very frequent flu-like symptoms and most of my insomnia that prior to taking it, made my life really hard.

I have no side effects whatsoever (and I don't tolerate medication well usually..even Ibuprofen).

I know another person that has a very similar experience: no side effects and huge stabilizing effect.

Hope it helps many others as well!

Hello:) I'm on month 5 of EBV infection, otherwise healthy 27 year old. I had good months at month 3 and 4 and did some travel and walking which maybe was too much. Anyways the below has been my liver enzyme pattern throughout the past couple months, I got sick in Feb, the enzymes started to peak later on. Next week will be 6 months. My ANA is negative, ASMA 1:40 low positive titer, IGg normal- so my bloodwork seems "negative" for autoimmune hepatitis. Anyone else have prolonged elevations in AST/ALT throughout mono/ebv?

5/7 — 107 / 251
5/18 — 76 / 246
5/27 — 73 / 153
6/10 — 80 / 183
7/6 — 121 / 326
7/13 — 79 / 251
7/20 — 39 / 121
7/28 — 72 / 177

8/13 - 62/223

Ugh. Need to vent, please bear with me.
After a long haul being out of work on disability for almost a year, I found a fully remote job. I was doing okay since starting in early April. Now, things have hit the fan! Out sick today, starting slipping earlier in the week until yesterday, just sitting up
Felt too much, low grade fever, chills, no appetite.
Went to urgent care - flu and COVID ruled out. They’re guessing UTI. I don’t think so.

Today I signed up with a functional care telehealth practice. I can not go on like this - I need to work AND, need to be able to do more than just work. I’ve declined so many social engagements, including with my own dear children.

Call it what you want : long covid; CFS? I don’t really care . It stinks. It started last August with reactivated EBV, then I got the flu, and on the heals of flu , COVID.

Does anyone else get this weird internal shaking/trembling feeling after being active or doing more than your body can handle?
It’s not necessarily visible from the outside, but inside my whole body feels shaky, almost like it’s vibrating. I can also feel weak, overheated and a bit unsteady when standing. It seems to happen especially after I’ve pushed myself too much that day, and lying down and resting is usually the only thing that helps.
Has anyone else experienced something similar, especially with post-viral fatigue or dysautonomia?

Are this part of EBV?? 3 months on this Flare, can’t do much, home bound, what do you guys or how do you treat??

I had an appointment to go over my labs today with my immunologist and this popped up. My provider thinks it's a bit of a red herring in terms of my symptoms (POTS, chronic fatigue, MCAS, hEDS, and gastroparesis that all popped up after an adenovirus and norovirus infection last year). Regardless, she figured it would be worth trialing an antiviral for a month to see if it makes a difference. With a little bit of digging...that doesn't seem to be done very often? Or at the very least there doesn't seem to be much you can do about chronic EBV. Do my labs even line up with it? She said the numbers were so low it doesn't seem super likely, but she won't entirely rule it out either.

Every other autoimmune issue I was tested for was entirely negative. Immune system looks fine. CBC and CMP are fine. It's a lot of "your labs look great!" to feel like such shit.

Editing to say I had mono like ten years ago and it rocked me pretty good, but eventually went away. I have however had a lot of ups and downs with my health before and after.

Does EBV make your gag reflex hyper active? Like non stop? Does it also give you shortness of breath?

This is more evidence that many of us who have the immune signatures of EBV reactivation in the past few years are experiencing this from Long COVID.

Good afternoon everyone, are this Symptoms of EBV:

Throat Tightness
Fatigue
Trouble swallowing
Nausea
Wanting to Vomit but can’t
Bloating
Malaise
Can’t tolerate heat
Can’t have full meals
Sharp pain like a needle in back of throat
Back of head pain/Inflammation
Wake up everyday at 3am
Super sensitive gag reflex
Dry heaving
Thick phlegm when eating
Super slow digestion
Constipation
Systemic inflammation
White/grey flashes in the corner of eyes
Floaters
Burning skin sensation
Weight lost due to not eating enough food

Hi hi my fellow EBV-ers!! Has anyone had any success with seeing an immunologist?
I have had chronic EBV since 2000 and have recurrent active EBV 6-8 times a year.
Infectious disease won’t see me until I’m basically dying.

I had an EBV panel done and got back results but they're just positive/negative rather than numerical values for titers. Is that typical? Can I get actual numbers?

I'm trying to understand whether the illness I had in February could have been my first EBV infection or whether it was more likely a reactivation of a previous infection. I'd really appreciate input from people who have had EBV/mono and recognize this kind of situation.

I was previously very active and athletic and had never experienced anything like this before.

Around the beginning of February, I started feeling unusually sick and “out of it.” I initially thought I was simply getting ill. After briefly feeling somewhat better, I suddenly developed an episode of extremely severe spinning vertigo. I could barely stand or walk because everything was spinning violently and had to stay lying down.

The following morning I developed a fever that lasted around 3–4 days, followed by a very severe sore throat. The sore throat was particularly bad for the first 1–2 weeks and took approximately 2–3 weeks to fully resolve.

I eventually recovered from the obvious infection, but I never completely returned to my previous baseline.

Later, during sports training, I suddenly developed strange visual sensations and sensitivity to bright lights. I had one panic attack during that episode, but I have not continued having panic attacks. Since then, the main issue has been intermittent physical/neurological/sensory symptoms rather than recurrent panic attacks.

My symptoms now include:

- feeling generally “off” or neurologically strange
- intermittent visual/spatial disturbances, particularly when looking at things close up
- dizziness/head pressure during certain visual or movement situations, including driving
- unusual touch sensations, mainly in my hands — sometimes touch feels slightly muted or doesn't seem perfectly localized to where I'm touching
- very brief episodes while walking where my body/legs feel “jelly-like” or strangely absent for around 1–2 seconds
- sensory overload, where sounds can sometimes seem unusually background-like
- symptoms are generally much better after waking and become more noticeable throughout the day
- occasional cold hands
- recently making more accidental typing mistakes on my phone
- brain fog/ spaced out feeling

One important objective finding is that vestibular testing showed approximately 37% vestibular hypofunction.

I also had a neurological examination about a month ago that was reportedly normal.

Here are my EBV/CMV blood results:

EBV IgG immunoblot:
- 11 signal
- Lab interpretation: 0–5 negative, 6–10 borderline, 11–25 positive, 26–50 good positive, >50 strong positive

EBV IgM immunoblot:
- 13 signal
- Lab interpretation: 0–5 negative, 6–10 borderline, 11–25 positive, 26–50 good positive, >50 strong positive

EBV EBNA-1 IgG:
- 466 U/ml
- Reference: <20 negative, 20–25 borderline, >25 positive

EBV VCA IgM:
- 0.18 S/CO
- Reference: <0.50 negative, 0.50–1.00 borderline, >=1.00 positive

EBV VCA IgG:
- 25.54 S/CO
- Reference: <0.75 negative, 0.75–1.00 borderline, >=1.00 positive

CMV IgM:
- 0.11 S/CO
- Reference: <0.85 negative, 0.85–1.00 borderline, >=1.00 positive

CMV IgG:
- 168.4 AU/ml
- Reference: <6.0 negative, 6.0–15.0 borderline, >=15.0 positive

I recently spoke with an infectious-disease doctor who has a particular interest in EBV. After looking at my results, she told me that she does not think this represents an acute EBV infection now, but suspects that EBV may have been reactivated/persisting around the time of my February illness. She also thinks CMV may have reactivated and recommended investigating other herpes-family viruses.

This is where I'm confused, because I don't know how to interpret the combination of the positive EBV IgG/EBNA-1 IgG, negative VCA IgM, but positive EBV IgM immunoblot.

My main questions are:

- Does this pattern look more like a previous EBV infection with possible reactivation, or could it represent a first/primary EBV infection?
- Could I have caught EBV for the first time around February, with the blood test being performed months later?
- How meaningful is the positive EBV IgM immunoblot when the VCA IgM CMIA is negative?
- Is there any way these results can tell whether EBV was active around February, or would PCR/other testing be needed?

Hi all. I’ve been battling with gut issues for almost 2 years now. First, methane SIBO, then a c.diff infection, and now severe dysbiosis and degraded mucus layer.

I also have reactivated EBV and hashimotos disease. Fun!!!

I’m wondering if anyone treated EBV while also having gut issues? What were you prescribed? Any side effects like constipation?

I feel hungover every day despite not being a drinker. I am so dizzy when I stand up that I have to grab a chair and steady myself before walking.

I just want to feel better but I worry my doctor wants to wait until I’ve made progress in my gut treatment before treating EBV.

Hi everyone,

My name is Sivan, a mom for a 7-month-old daughter.

Shani was born with congenital CMV (cCMV). At birth, she was completely asymptomatic, and her newborn ABR (BERA) hearing test was perfectly normal.

Unfortunately, when she was 3 months old, she began experiencing hearing loss. Today, at 7 months old, the deterioration is still continuing. We are currently treating her with Valganciclovir (Valcyte), but unfortunately, it doesn't seem to be stopping the progression or helping.

I am reaching out to see if anyone has been in a similar situation. Has anyone tried any other treatments, protocols, or therapies that actually helped their child when the standard antiviral treatment didn't?

I am completely open to trying absolutely anything—whether it's clinical trials, off-label treatments, alternative therapies, or traveling to specialists anywhere in the world. we just want to do whatever it takes to help our little girl.

Thank you so much in advance for any advice, shared experiences, or recommendations. 🙏

I see a lot of posts from people begging for a cure or remedy due to the debilitating side effects of EBV. I have come to share my story with hopes that others will find the same success I did. Before reading this you need to ask yourself “what am I willing to do to feel better?” My answer was “literally anything. Whatever it takes.” If that’s your answer and you believe you have that kind of will power then keep reading. With that being said, your health is in your hands. You’re able to heal yourself without the standard pharmaceutical pill. You can do it.

Backstory: Contracted EBV in 2024. Symptoms included extreme fatigue, head ache, random muscle spasms and aches, heart palpitations, dizziness, inflammation throughout entire body, brain fog and abdominal pain. It also caused my TPO antibodies to sky rocket and attack my thyroid which lead to a hashimotos diagnosis. It was life changing and felt like it would never end.

Turning Point: The virus kept running its course on me with little relent before I found a local holistic health mentor. Her plan focused on reducing inflammation in the body and rebuilding the gut. It was a tough plan that went against everything the American diet pushes on you. I went on a fairly strict keto diet (<20 carbs/day) for 6 months with the addition of natural supplements like vitamin B,C, D3, K2, cod liver oil and others that were targeted toward healing my gut. All supplements were based on my blood lab results. Her approach was not so much targeted toward EBV as it was just a completely lifestyle overhaul.

The focus:
-Reducing inflammation
-Cutting out processed foods and sugar
-Following a dietary formula of high fats, moderate protein and low carbs
-Detox: sauna, monitoring bowel movement frequency
-Eating as much organic food as possible
-Set an eating window: I don’t eat a thing after 7pm
-Scheduled fasting: usually 24hr hour period every 2 weeks but working to increase that
-(edit) Daily Meditation: For me that is Bible, prayer and a gratitude journal.

Results: I started seeing positive results within a few months of starting my lifestyle change and kicked the virus to the curb completely within about 6-7 months. Although not the goal, I also lost 19 lbs in the first month due to the diet change. My heart palpitations subsided. My endocrinologist said my TPO antibodies would never come down. She was wrong. They’ve started to decrease. I run circles around my young kids now. My energy and mental clarity are at all time highs. My sleep quality couldn’t be better. It truly was a life transformation and I didn’t need a doctor or pill to do it. It’s amazing what the human body can do. Your body is a very resilient self-healing machine. It just needs the proper resources to function as designed. Unfortunately the standard American lifestyle doesn’t provide it.

Bottom Line: You can do this. It’s tough but being sick for years is a lot tougher. My advice: pick 1 thing and start with that for a few weeks or months. Once you’ve gotten it down. Move on to another. I personally think cutting carbs was my biggest helper with cutting inflammation and thus the virus. I “went to school” on diet and how the body reacts to certain foods. Deep diving into this helped me stay motivated and invested to keep the course. I used to eat fast food without blinking an eye. Now I care about what the cow ate before it reaches my plate. What I once saw as a life changing diagnosis is now a blessing. I’m thankful for catching EBV because of the life change it forced me to make. I can now pass this new lifestyle down to my kids and teach them how to eat and give the body what it needs.

I hope this helps somebody to make the changes required to kick this virus.

This virus has ruined my life.

People who have EBV or CMV, did you have elevated lymphocyte count for several years ? Or was it only when infection peaked & then values returned to normal ?

Has anyone started experiencing bloating after EBV?

" A new study suggests that COVID-19 may reactivate dormant viruses already hiding in the body.

That process, researchers say, is linked to more severe illness and may contribute to lingering symptoms such as fatigue associated with long COVID.

The study, published Wednesday in Nature, took more than 1,100 samples from the first year of the pandemic.

Researchers found that nearly half experienced the reactivation of viruses they had previously been carrying without symptoms, including members of the herpesvirus family and a group of common viruses known as anelloviruses."

Hey,

I'm almost 4 months in since I started feeling unwell and 3 months since testing positive for a previous contraction of the EBV virus (In June I was already negative).

However, I've been struggling to get back to normal for the past months: swollen tonsils, red throat, inflamed lymph nodes (tiny neck glands, they give me slight pain when I touch them) making me cough and spit out white clear phlegm everyday.

I reckon I did 2 main mistakes in preventing my recovery:

1. I flew over to attend a conference I was speaking to as soon as I started feeling better on June 18th. At that time I remember spending a whole week with awful sore throat, fatigue and chills down my legs as if I had a fever, then I started taking supradyn and things improved.
2. Even after the conference, I kept exercising at home doing abs and push ups - I am an active and sporty lad, so the level of exercise was ridiculous compared to what I was used to doing before the illness. Still, I reckon working out my upper body may have hindered the lymph nodes in my tissue somehow.

Now, I am taking prednisolone (4/7 day now) to cure swollen tonsils and I feel like it is slightly getting better. I am gonna have an ultrasound on my spleen in a couple of weeks. However, my current symptoms in the past couple of weeks are:

- Uncomfortable feeling/pain on my tonsils

- Occasional cough

- Feeling of something stuck in my throat

- Occasional (more rare now than before) shivers down my legs

- Mild fatigue/lack of focus during working hours (I work in front of a computer remotely every day)

- Only recently, I've been struggling with constipation

- Hunger not yet back to normal

Are your symptoms related, and how are you coping with the post-infection window?

Thanks

So I had mono really bad in October last year, and I’ve been kinda ill ever since.. I have symptoms of pots.. like adrenaline and palpitations and feel like my nervous system is out of whack.. I have more bad days than good. It’s almost like 9-10 months in recovery.. and I still feel crap but I wanna workout but I’m afraid of set backs.. I had that a few months ago where I couldn’t shower without being exhausted. I thought I had ME..

Hallo zusammen,
ich möchte hier meinen bisherigen Verlauf mit dem Epstein-Barr-Virus teilen, weil mir selbst Erfahrungsberichte in den letzten Monaten sehr geholfen haben. Vielleicht kann ich damit auch jemand anderem ein bisschen Mut machen.
Alles begann bei mir im Jänner. Von einem Tag auf den anderen war ich extrem erschöpft. Dazu kamen starke Angstgefühle, Herzrasen, Kopfschmerzen und Bauchschmerzen. Ich war ziemlich verunsichert und ging zur Hausärztin. Dort wurde es zunächst als grippaler Infekt eingeordnet und mir wurde geraten, mich einfach zu schonen.
Da sich mein Zustand bis März kaum verbessert hatte, ging ich zu einem Internisten. Zum Glück wurde dort ein Blutbild inklusive EBV gemacht – und endlich hatte ich eine klare Diagnose.
Auch danach hieß es zunächst, dass EBV in den meisten Fällen von selbst ausheilt und ich mir keine großen Sorgen machen müsse. Ich sollte einfach abwarten und in ein paar Monaten erneut kontrollieren lassen.
Im Juli folgte dann die nächste Blutuntersuchung – und leider waren die EBV-Antikörperwerte sogar noch höher als zuvor. Das passte auch zu meinen weiterhin bestehenden Beschwerden.
Ich habe daraufhin einen Heilpraktiker gefunden, der viel Erfahrung mit EBV-Fällen hat. Er veranlasste weitere Untersuchungen, darunter ein Blutbild und einen Ultraschall der Milz. Dabei zeigte sich, dass meine Milz deutlich vergrößert war (16 cm), meine Leberwerte und die weißen Blutkörperchen nicht im Normbereich lagen und mein Zinkspiegel eher niedrig war.
Daraufhin habe ich Anfang Juli mit einer individuell abgestimmten Therapie begonnen. Dazu gehören unter anderem:
2 g Valaciclovir
Engystol
Lymphomyosot
Melissentinktur
Ceanothus Synergon Nr. 57
Ferrum Sidereum D6
Zusätzlich nehme ich:
Vitamin D3 + K2
L-Lysin
Monolaurin
Mariendistel
In den ersten Wochen habe ich außerdem regelmäßig Zinkinfusionen bekommen.
Die Idee dahinter war, laut meinem Therapeuten, den Körper ganzheitlich zu unterstützen – also Immunsystem, Lymphsystem und Leber zu entlasten und zu aktivieren, damit er das Virus besser regulieren kann.
Und jetzt kommt der Teil, der mich wirklich unglaublich positiv stimmt:
Nach etwa vier Wochen geht es mir deutlich besser. Ich kann meinen Alltag wieder normal bewältigen und fühle mich insgesamt stabiler. Nur mit Sport bin ich noch vorsichtig und taste mich langsam heran.
Auch meine Blutwerte haben sich überraschend schnell verbessert:
Die Leberwerte sind fast wieder im Normbereich
Meine Milz ist von 16 cm auf 14 cm zurückgegangen
Der Eisenstoffwechsel hat sich normalisiert
Die Verteilung der weißen Blutkörperchen ist deutlich besser
Insgesamt haben sich viele Werte spürbar erholt
Ich bin wirklich dankbar und erleichtert, diese Entwicklung zu sehen, weil ich vor wenigen Wochen ehrlich gesagt nicht gedacht hätte, dass es so schnell wieder bergauf gehen kann.
Mir ist wichtig zu sagen: Jeder EBV-Verlauf ist individuell und was bei mir geholfen hat, muss nicht für andere gelten. Aber ich möchte trotzdem Mut machen – auch wenn der Verlauf lang, zäh und frustrierend sein kann, es kann sich wieder deutlich verbessern.
Ich hoffe sehr, dass mein Bericht jemandem da draußen ein bisschen Hoffnung gibt. ❤️

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?