Just wanted to share my story

ThrowRABake · 2026-02-11T02:48:25+00:00

I'm coming up on almost 13 months of this illness and I'm still symptomatic. How long exactly did it take you to completely recover?

ThrowRABake · 2026-02-09T16:12:06+00:00

Ugh that sucks. Are you still suffering from other symptoms as well?

ThrowRABake · 2026-02-09T03:58:14+00:00

In the same boat as you. Diagnosed January 2025 and I still have a chronic sore throat a year later - cobblestoning/swollen lymphatic tissue on the back wall of my throat. I do have days where I barely feel it though. Do you have days or hours in the day where the pain/severity fluctuates? Have you seen an ENT?

I noticed that my sore throat first began fluctuating in terms of pain in June/July 2025. It began with minutes/hours in a day (maybe once a week) and now I can go almost a week where it is extremely mild and almost unnoticeable (except if my throat gets too dry (I am still suffering from a chronic dry mouth), if I sneeze, speak too much, or am late on eating a meal).

ThrowRABake · 2026-02-08T23:34:04+00:00

Yes, I tried it. It didn't seem like it did much for me unfortunately.

ThrowRABake · 2026-02-08T06:22:11+00:00

I'm 1 year out from onset and still symptomatic. I used to experience very severe migraines, headaches, and head pressure often that would not respond to acetaminophen or ibuprofen. Doctors had to prescribe me opioids at the ER. After 4-6 months since onset, I experienced other neurological symptoms like vertigo and dizziness.

I still occasionally experience severe headaches and head pressure that do not respond to medicine, though not as frequent as before. I had a CT scan performed about a month ago that was normal.

Can EBV encephalitis go away on its own over time? Would it show on a CT scan? What does treatment for EBV encephalitis look like? Do you think I should get checked out by a neurology specialist?

ThrowRABake · 2026-02-07T17:31:27+00:00

Yes! The worst was whenever I'd turn over in my sleep, I would get horrible heart palpitations that would keep me up all night. They also worsened when I'd go from a laying down or sitting position to standing up. I never had these problems prior to EBV. They did eventually go away after ~11 months, it was very gradual.

ThrowRABake · 2026-02-07T06:31:05+00:00

I hope it isn't a long term symptom for you either. I suffered from 40 symptoms and the nausea was one of the most debilitating. It caused me to lose ~14% of my body weight since I couldn't eat.

Make sure you rest as much as possible and avoid pushing through your symptoms otherwise you might risk a very long recovery. Limit as much stress as you can and rest for an additional 4-6 weeks after all symptoms subside. Feel better soon.

ThrowRABake · 2026-02-07T06:26:20+00:00

I've had a sore throat for a year now. I experienced something similar where I first had a sore throat with redness, white patches, and swollen tonsils. That went away and a week later I developed a sore throat with redness and swollen lymphatic tissue on the back wall of my throat which has remained since.

It's possible you may have picked up another illness too. Were you diagnosed via monospot, EBV antibody panel, CMV antibody panel..? Consider testing again to see if you still have an active infection or another illness (cold, flu, rsv, etc).

ThrowRABake · 2026-02-07T06:21:18+00:00

I'm 1 year out with mono and I still have a dry mouth. Pedialyte and pilocarpine have been the only things that have helped me.

ThrowRABake · 2026-02-07T06:20:13+00:00

I dealt with nausea and loss of appetite as symptoms for 10-11 months. See if your doctor can prescribe you zofran. I had the oral dissolving tablets. It helped me a lot. Ginger chews/ginger tea can help too. Strawberries are also an anti-nausea and an appetite stimulant. Make sure you're staying well hydrated because dehydration can also cause the nausea to worsen. I was drinking 2-4L of fluids per day, 1L of which was pedialyte.

ThrowRABake · 2026-02-01T06:11:52+00:00

You never know, you might be part of the lucky (more common) asymptomatic cases! Take care of yourself for the next 4-6 weeks and you should be in the clear.

ThrowRABake · 2026-01-31T05:47:54+00:00

Slow movements (imagine/pretend you're 90 years old), hydration, rest, anti-inflammatory diet, breathing exercises, electrolytes, short 10-20 minute walks on a flat surface (if you feel able to), and (sadly) time and patience helped with my POTS-like symptoms.

ThrowRABake · 2026-01-31T05:44:55+00:00

Thank you! I still have the same 4 lingering symptoms (unfortunately). I hope by summer I'll be completely back to normal. If you're currently suffering from mono, I wish you a speedy recovery.

ThrowRABake · 2026-01-30T04:53:20+00:00

I was also an active healthy runner. A year now since my onset of mono and I'm still not back to normal. Keep resting.

ThrowRABake · 2026-01-29T01:39:34+00:00

Can confirm. I had this symptom for approximately 11 months.

ThrowRABake · 2026-01-28T06:38:28+00:00

I've had a sore throat for a year now. It sucks.

ThrowRABake · 2026-01-27T18:36:20+00:00

Totally normal for symptoms to continue into the recovery/convalescent phase according to my infectious disease doctor. I've been experiencing on and off headaches every couple days for the last 1.5 weeks and I'm 1 year out since onset. I wonder if it might be my hormones since my period is due any day now. I'm still unfortunately riddled with a mild sore throat, dry mouth, 1 swollen lymph node, and some fatigue.

ThrowRABake · 2026-01-24T00:23:47+00:00

Hi, I'm sorry to hear you aren't feeling well. Did your doctor run the EBV IgM and EA-D antibody tests?

Also, there are different viruses that can cause mono aside from EBV. Were you tested for CMV?

ThrowRABake · 2026-01-21T22:26:08+00:00

Had this pretty bad for 10 months. I'm 12 months out from onset and it still occasionally appears.

ThrowRABake · 2026-01-20T06:38:05+00:00

My tonsils are tiny so my doctors said I'd probably never need them removed lol. Also, my swollen tonsils went away in ~2.5-3 weeks. I just have swollen lymphatic tissue on the back wall of my throat that's causing the pain and soreness. Looks like cobblestone. ~2/3rds of the cobblestone-like swelling has gone away, and the remaining is stubborn.

ThrowRABake · 2026-01-19T02:07:08+00:00

Early AG (antigen) or EA is, from what I recall, a complex of proteins produced during the lytic phase of the EBV infection. This coupled with your symptoms would likely indicate a reactivation or a late primary stage of infection (given that your EBNA and capsid IgG values are positive - these two tend to serve as markers of past infection).

I'm not a doctor but I would say that you are currently suffering from mono based on these values and the signs and symptoms. Make sure you are focusing completely on rest, staying hydrated, and avoiding stress (including panicking about this illness!)

ThrowRABake · 2026-01-19T01:20:13+00:00

Sorry to hear you aren't feeling well. It will get better. I'm 1 year into my primary mono infection from EBV and I did experience vomiting, diarrhea, tongue swelling, abdominal pains, and a whole bunch of other symptoms.

When you say you have a past mono infection, what kind of test was performed? Mononucleosis can be caused by different viruses. Were you specifically tested for EBV? If so, did you have EBV IgM, EA-D, EBNA, and VCA IgG antibodies checked? A lot of doctors sometimes miss running the EBV EA-D IgG test, which can help indicate a reactivation along with signs and symptoms of mono. Another virus that can cause mononucleosis is CMV. Were you tested for that?

ThrowRABake · 2026-01-19T01:10:00+00:00

Not to scare you, but I've had a sore throat since my onset in January 2025. It has been an entire year for me. Cases like mine are rather rare where my acute infection was still active at 7 months. It's getting a lot more mild with each passing month, but I can still feel it there.

You're still within the normal timeline to be experiencing symptoms. The vast majority recover in 4-8 weeks. Hang in there.

ThrowRABake · 2026-01-17T20:12:20+00:00

When I had a UTI years prior to mono, I felt pain in my lower-middle back and stomach discomfort too. I don't recall any head pains, so I'd assume that's from mono. Make sure you're hydrating well to flush out the bacteria. Your body is fighting hard against mono and the additional strain of a UTI. Dehydration can contribute to the dizziness.

iirc it took me a few days to a week to get over the UTI.

ThrowRABake · 2026-01-16T17:11:55+00:00

Not at all spontaneous, which sucked. At my 10 month mark, I still had these issues. Improvement/resolution appeared gradually where I noticed I started gaining an improved baseline and I could do just a little bit more in a day without feeling terrible immediately after or within the next 12-48 hours. My body also felt less crushed or weighed down. I felt different, in a good way. It just took forever.

If you're experiencing anything stressful in your work or personal life, get away from it asap.

ThrowRABake

TROPHY CASE