Hi All, was hoping i could get some advice. Sorry if this is long but has been bothering me a lot until i found this forum.
About 1 month ago I started to feel the onset of what i thought was a flu. I took a few days off, felt okay and went back to work and then all of a sudden was hit like a ton of bricks with the extreme exhaustion, headache, dizziness, blurred vision. My glands were swollen with 2 clear/white spots that look almost like ulcers, It was so bad i had to check into the ER.
They treated it as a flu and prescribed antibiotics. they didn't help at all. Every-time i would go to a GP they would treat it as a flu prescribing antibiotics, but because i knew in my body it was more then a flu i had to change doctors multiple times until i found one who would actually take my blood.
Ive been tested for nearly everything they could think of and also had CT scan and ENT. Everything has showed up normal and nobody can give me an answer. The only thing that showed up positive was my EBV test, however the doctors could not say that it was 100% it, as the IGg and EBNA antibody was positive but IGm was negative, meaning i had contracted it a long time ago even though I'm pretty sure i would remember having mono/glandular fever. They advised there was nothing else they could do to confirm whether I have mono.
Anyways the symptoms seem to match up, but not knowing for sure has been really UN-nerving for me. The worst of the symptoms for me has been this weird migraine/brain-fog/headache which seems to be affecting my vision. Its like my eyes cant focus on anything and has a weird reaction to light. Has anyone else had this? For so long? It hasn't gotten any better for a month now. Not knowing has made me so anxious, and my doctor has prescribed be prochlorperazine for this 'vertigo' which I'm really reluctant about taking as it is apparently an anti-psychotic medication? which scares me. I don't want to drown in medication.
I don't have an issue going through whatever i need to naturally to go through, but like a said, its the fact that i don't know if its mono or not. I'm worried its possibly something else with the same symptoms and i know its dramatic but im sure some of you can relate to the anxiety. I just don't know what to do anymore, if i should keep trying for other tests or just give up and hope that its mono... sorry for the long message and thanks in advanced.
Anthony
Hi.
Sorry you’re going through the unknown. I went through that too.
Thought I kept coming down with flus for about a month. Then at work it hit like a train, felt so faint and weak. Driving to the doctors I literally went in 4 hours before my appt because I felt like I was dying I didn’t want to wait at home any longer.
My EBV markers also showed past infection. I think it was mono but I didn’t test in time for the recent infection markers because it wasn’t that bad until it got really bad. Anyways. Long story short: I was so weak and sick I was off work for months. Doctors were useless. Kept saying depression or post viral fatigue.
Whether or not it was EBV or andifferent crazy virus I dunno but I went through what you’re going through. I would hang on to the prescription for any psychotic meds but if you need it dont feel bad just fill it out. But maybe wait and see?
Hope you feel better. Be patient and if you can - rest. Fully rest in bed and at home.
I suppose I should tell you an update instead of leaving it so gloomy. I am much better and back and work. Unfortunately 2 family members seem to have the same bug.. their story is similar to ours. It’s a awful thing to go through but slowly over weeks (or months) you will get back to your normal routine.
Hey there,
what you are going through sounds really similar what I went through (and am still going through). I did blood tests for a lot of different things and nothing wrong showed up, but I was weak, faint, dizzy, had brain fog, blurry vision, you name it. Mono can be a difficult thing to test for because if it isn’t done at the right moment it won’t show up. I wouldn’t be too worried if I was you, definitely sounds like mono and You already did other tests to clear other things out of the way.
The anxiety from this illness can really suck, but its just that And nothing more serious. It goes away When You start to feel better, And You will get there, just rest, rest, And more rest!
thanks so much for your reply and for sharing.
Hi Ant,
I went through all these same symptoms, it lasts for a long time and produces so many strange symptoms, you will recover even though it doesn't feel that way right now.
Hi Anthony, Wow, you're going through a really hard time, seems like the worst part for you is not knowing what's wrong, that would cause anxiety.
Mono can reactivate, but as I'm not a doctor, I also won't know for sure.
But all of your symptoms sound like mono, so this is a good place for reassurance, as this virus can be a rollercoaster ride in terms of symptoms and duration.
It's really a good sign, that you've been tested for everything, and nothing came up positive. 😊
Sounds like mono to me, and I would be frustrated too, if doctors couldn't confirm it, but hang in there and take it easy and try to ease your symptoms.
Hi Anthony,
So sorry to hear you've had such an awful month with these symptoms and worry. Really hoping and praying you feel much better soon. I'm no doctor or medical person but certainly a lot of the symptoms you describe I can relate to from my own experience of going through mono, in particular the fatigue and feeling drained and a kind of 'stunted' dizzy feeling, or a feeling that you know something is just not quite right but you can't fully put your finger on it.
I'm hoping that the doctors can offer some help and reassurance, if it is mono then it will get better Ant and this is the worst phase you are going through right now. Just take a step back and get plenty of rest if you can, I know it's not easy but please do put your health first above work at this time. And again if it is mono, don't panic if it takes a little while for recovery, than can happen and be normal but absolutely you will get better from it, and this stage of the first few weeks / month or two are certainly the most intense and worst, that was my experience anyway.
Things that helped me during recovery was taking vitamins and herbs, a good strong multi-vitamin per day (I take Immunace Extra here in the UK), a B50 or B100 complex vitamin per day (great for nervous system and energy levels), higher doses of Vitamin C (1000-3000mg per day) and immune boosting herbs like oregano, echinichea and siberian ginseng. These can help your body through a stressful time and hopefully to feel a bit better as you recover.
I really do empathise that not having a firm diagnosis is so hard and is a horrible thing to go through, do keep going to the docs and hoping someone can offer better insight and reassurance that you've had up until now - I know there are some people on the forums here who are good at interpreting blood results / markers for EBV, I'm not any good at that unfortunately but it certainly could be mono by the sounds of it, but do keep checking in with the doc.
I believe you're going to get better and get through this Anthony, just hoping that things settle down and you can get somewhere with the doctors. God is the great healer and physician I do believe and I believe that wherever it is mono or something else that absolutely God is going to bring you through it and get you well again - hang in there and do keep in touch and let us know how things are going.
Craig
.....oh, and almost all adults have had mono, many without knowing it was no-one, thinking it was a sore throat, so you wouldn't know for sure, if you have had it before.
Usually it's a once in a life illness, but it can reactivate in some individuals.
Also.. .I had been running a fever for 6 weeks, and had a second opining, and she thankfully tested for mono, and I was positive. Wow, that was so great to know what was wrong.
First doctor didn't test, guess because I'm not a teenager! So either I got it later in life, or it has reactivated.
Almost everyone has had the virus growing up, most people without knowing.
That's probably why doctors don't suspect mono with grownups, and frustratingly forget to test.!! Hope this makes some sense.
So as you say it’s a once in a lifetime illness .. this is my first time and has been 6 months now so I’m hoping you’re right .... that once I’m through this it won’t come back 😩
I hope you feel better soon Lori, and that this is the first and last time for you. Hang in there. 🍀🌼
Thank you Malene! I couldn’t go through this again. It’s been like solitary confinement .
I know. I've only had light symptoms compared to a lot of you, and even that's been soo frustrating, can't even imagine what you guys are going through. Hang in there Lori. Hope there's light at the other end of the tunnel for all of us.
Well I would start boosting your immune system now ... lysine is a great one . I only ever had light symptoms in the past just a slight flare up around the mouth . Now I see what it was due to but before this hit I had no clue .
Yes, I've heard about lysine, thanks, I'll think about boosting my system, I'm five months in, slight fever sometimes, and that weird off feeling, and a little more tired, and some depression....but functioning pretty normal for now, but you just never know. Feel better soon. 👍
How long before you really got sick? After the mouth thing?
I got really sick April and the mouth thing was an ongoing thing for many years now but never got the full blown Illness . Now I do have it though I’m seeing all the signs .
Sounds like mono to me Ant,i felt exactly like that and my ebv test showed past infection but I knew I had never had anything like this before so myself and doc presumed it was what I had now as the test was done a few weeks into my illness so would have shown as a past infection,ive had it for 15 months now and had 4 relapses with it,its nasty,im just satrting to feel a little bit normal again after the 4th relapse which put me back in bed for 7 weeks,like Craig says rest and vitamins is the best thing,i also suffer with vertigo not connected to this called Menieres(although ive had a lot of dizziness with this virus) and I take prochlorperazine for it,they are also used for nausea and migraines
I’ve not had the swollen glands or sore throat I do get the achy feeling in my legs though and the fatigue and depression boy ... it’s the worst !
Gosh 4 relapses ! How were you in between ?
I’ve just felt constantly awful now for 6 months .. I think I’ve 5 or 6 ok days where I’ve managed to do human things like go to events .