EBV? Don’t know please help

Ears, nose and throat
1

Hi guys,

Here is my story of what I think is EBV.  My hope is that someone can confirm if these are typical symptoms or offer what helped them recover.

On November 10, 2017 I was at work when I suddenly felt weak and hot and wobbly. My coworkers said I was pale as a ghost. I left work soon after and drove to my doctor. During my drive I got so fatigued that I was worried I would crash.. went to my doctor 2 hours earlier than my appt because I thought I was going to collapse. She diagnosed me with asthma (false.. never had it and the inhaler did nothing). 

The first week my symptoms were:

-extreme fatigue and weakness 

(Felt like I would collapse or die) 

-nausea 

-no appetite 

-extreme chills but no fever 

-strange sudden onset of morning anxiety. I would wake up with my heart pounding and an unexplainable fear and feeling of impending doom.

- strongest sense of smell and taste everything would make me feel nauseous couldn’t stomach any food first week. 

For the last few weeks, the following symptoms have come and gone:

-fatigue (comes in waves .. sometimes it’s less and sometimes it leaves me bed bound) 

-joint pain

-abdominal pain 

-weird sudden neck pains 

-persistent mild sore throat 

-back pain 

-shortness of breath 

-chest pain

-headaches (mild) 

-sensitive eyes to light 

-brain fog 

-nausea and lack of appetite (less often now but still occurs) 

-anxiety (from feeling trapped st home and sick for so long) 

I’ve had Abdominal ultrasound, chest x rays, EKG (ECG? Not sure which one is the correct one lol. For the heart), CT scan.. tons of blood work.. I should be a healthy person according to all my medical investigation. I feel terribly ill, nothing like I’ve ever experienced before. 

My monospot was negative. EBV was positive for IGG, indicating a past or recent infection. All other EBV antibodies were negative. My doctors isn’t sure what to think of the blood panel. 

Please advice, share your stories  

2

Hi vancityraincity,

from my my personal experience your symptoms sound typical for someone with glandular fever/mono.

my blood test also showed a past or recent infection to this horrid virus, 

I got my diagnosis dec2016, so it's been a year for me now. I'm 41. And I have never experienced an illness like it.

ive experienced two stiff necks, extreme fatigue, hot and cold, aches, burning thighs, tingling in arms and legs, nausea, breathlessness, very low mood, crying.

last January I was completely wiped out and could hardly move, it's been a really hard year, I would say a roller coaster, or zig zag recovery! It feels like 2 steps forward then 3 back, but slowly, very slowly you do get better!!

i eat as healthy as I can, avoid alcohol, sugar. I take vitamins, ginseng, probiotics.

and get plenty of rest, and when you find you have a bit of energy back, take it easy and still rest.

a year on I am doing a great deal better, I can now do food shopping, walk the dog, but I'm not quite normal yet. But it will,happen. It's happening right now, every day is a step closer.

there are so wonderful people on this forum who I'm sure will share their stories and advice, it helped me so much to know that this is normal for the virus and not to panic that it takes so long.

take care

Caroline.x

3

Hi Van City,

So sorry to hear you have been struggling and feeling so bad lately. I agree with Caroline that those symptoms can be common with glandular fever / mono / EBV. You're doing the right thing seeing your doctor about it all and make sure they keep monitoring you and doing blood tests etc when feeling this way.

It really is a horrible virus, it was over 10 years ago since I had it but I felt unwell and with low grade fever and fatigued to a level like I never had before. Gland pain in my neck and upper abdomen and groin were all factors for me too. It was awful and just didn't know what was happening or when it would get better. Just want to reassure that things do get better with it and that you will get better. Hoping your doctor can give you a clearer picture of if it is likely to have been EBV causing this, I think if you're not tested within the first few weeks of feeling unwell then it can possibly not show.

As Caroline says, just make sure you get plenty of rest and look after yourself through this time. Taking vitamins and herbs really helped me, a good strong multi-vitamin per day, along with B complex (great for energy levels and nervous system) and extra Vitamin C and D, and immune boosting herbs like siberian ginseng and echinicea can all help boost your system to cope with things better.

Really hoping 2018 can be a much better year - remember things will get better, don't panic if it takes a bit of time in terms of months rather than weeks from the time of initial infection, because it did for me and others I know, but that doesn't mean to say you won't get better because you definitely will - hang in there and hoping everything settles down soon - if it's EBV then this is definitely the worst phase you are going through and the intensity will lessen and it will become more bearable and full recovery will come.

Thinking of you and the forum here has lots of good folks like Caroline and others for offering good advice and emotional support too which is so often overlooked when dealing with such a virus,

Craig

4

I tested positive for EBV. You listed my symptoms. I also had a few others like headaches, sensitivity to noise, crying, and extreme weight loss. I'm 17 months in and am much better. I still have waves or short cycles is some symptoms. Not as often or as severe as in the past months.

I know one person who had same symptoms and they had checked her for every thing and told her she was fine. Once I told her our symptoms were the same she ask for EBV panel blood work. It came back positive. They told her the active virus was over but she has post viral fatigue. Strange they say post viral fatigue since all symptoms began with the virus and has just became less frequent and severe with time.

Good news is it does get better!

This forum has helped keep me encouraged. You will find goodwill, encouragement, and compassion from all of us. We seem to all be in different stages of recovery but all are recovering slowly but surely by God's grace.

Prayers,

Rhonda

5

Hey guys, 

Thanks for the responses. I actually have been reading almost every thread on this subject and the understanding and support here really have calmed me down multiple times, reassured me that I’m not going mental that this is something that has been experienced by others. Thank you for taking some time out of your day to show compassion and share your experience, it means the world to me and others I am sure. 

6

Hi Van,

These symptoms are very familiar, I too had never felt so bad, I tested positive for Epstein Barr/mono, then last February it showed that the virus was no longer active, I still didn't start to feel better until last September almost a year later. Hang in there.

7

Oh also have night sweats with no fever which also come and go. 

8

Today looks like a better day. Yesterday I seriously felt like I was dying. Went to the ER at 2 am for weakness and back pain and shortness of breath and nausea... when I got home I was so weak and terrified I wanted to go back but forced myself to stay home. So scary. 

Took vitamin C, D3, D12, and multivitamin. Woke up today feeling fatigued but bearable so I can actually walk to the kitchen and make myself something to eat. This virus plays with your head! When it’s bad you feel like you’re dying and when it’s better you feel crazy like was I just exaggerating yesterday? Hate it. 

9

Ahhhhh van city,

i can can sympathise so much with you, I remember those hard times too well! Just get through each day best you can just remembering there are better days ahead. 

My mum says it's just a blip in your life that you'll look back on as a distant memory, I can't wait for that, but things are looking up,for me already and others on here too.

you just need to hand on. It really does play with your head, I know. And it's horrid how it's up and down all the time, so cruel.

thinking about you and everyone else who's reading this.

happy new year!!!!

caroline xx

10

Same to you Caroline, Rhonda, Van, Mono too and everyone in terms of Happy New Year. Just hoping and praying that 2018 is a much much better one for everyone and that God protects us all and builds everyone up again after such a tough time in 2017.

Truly believing in Jesus Christ's wonderful and powerful name that 2018 is the year of recovery for everyone reading this message!!

Craig

11

You guys made me tear up, how can strangers be more supportive than your closest friends at home? Thank you.

Happy new year to you all, wherever you are. Wishing you all lots of health, because everything else is just gravy. 

12

Thanks Van, same to you too!! I agree it's a great forum here and I think the guys are so kind and understanding because they know what it's like to suffer with mono / EBV / other stuff too, I'm glad I came across the forum too and really and truly believing 2018 will be your year of hope, recovery and new strength from the Lord. Hang in there!

Craig

13

Hi vancityraincity,

comments used to make me cry a bit too. When my mum says to me you'll get better I tear up, in fact a lot makes me teary when I'm feeling particularly sensitive!

its true, my forum friends will understand a lot more than close friends, I'm not sure what some think?! Can't help that really!!

every day is a day nearer recovery.

thank you especially Craig for staying on this forum and the encouragement and advice you give everybody. And the hope that we need in those hard times. It makes a difference, YOU make a difference. As do all of you.

well wishes to you all!

Caroline.x

 

14

Hey guys. 

Really struggling right now. I’ve been crying all day, scared that I’m dying or that I’m never going to get better, feeling so weak like I’m abojt to collapse. I don’t even know if this is EBV. The panel said EBV IGG+ which means past infection but every other EBV test was negative. I am so scared and so weak. 

15

Most of us have voiced that we have struggled with these same feelings. We have all wondered if EBV could be causing all of the symptoms we are experiencing. Most have made many trips to physicians looking for answers. We all truly understand.

We all do what we can to find answers . Hang in there. There is hope and recovery. I know these words sound so empty when suffering so many symptoms.

Prayers, Rhonda

16

Hi vancityraincity,

all my doctor told me that my blood showed I had had glandular fever as a past infection and that I had already started making antibodies to it. I wasn't told about IGG? All I know is that I have been fighting a virus that has never made me feel like this before, so,it has to be mono/ glandular fever, or a similar strain.

i know it's hard. The crying and low mood is the worst, but it will lift. I promise it will. Symptoms will eventually go. Go easy and try take your mind off it. I played a lot of candy crush!!!

hope today is a better day for you.

caroline x

17

Hi Van,

Oh I really do want to reassure you that you WILL get through this and WILL get better, even though it may not feel like that now. I went through the same kind of terrible fears and emotions when going through the virus and I know many people on here have went through that too.

I really do understand it's so hard when you can't get a diagnosis, it's so frustrating and I would definitely still keep going back to the doctor on that one, but I know it's so tiring and weary, especially if you don't have good doctors that you can rely on to help you like I know I have had at times. It does sound like it certainly could be EBV but as you say you want to know for sure and to rule out other causes too.

Most important thing of all is that remember you WILL get better and God will help you through this and strengthen you again - 2018 is the year of recovery. Thinking of you at this hard time Van.

Craig

18

Thanks so much Caroline and Rhonda for your kind words of support as always. I'm really hoping and praying this can the year that God works in us to restore us and build us up again to full health, that would mean so much to us all I know! Happy new year to you all.

Craig

19

Hi Van,

I think we all remember the days of weakness and feeling ill, I remember telling people it is like a long lasting flu

Some of the  other EBV tests I believe are usually positive for a short period of time and then start to decline. I remember being in ER last December and they told me it was now a past infection(symptoms started in October) I thought why do I feel so terrible, I only started feeling more like myself 10-11 months in and still have to be careful not to overdo although I can get through a day now, A year ago I could barely get out of bed.

The feeling of being anxious and scared is part of the virus, (I never had this before) it lasted a long time and has now gone by, 

Caroline is right doing something such as internet games, music, TV, books, guided meditation anything to take your mind off the virus and pass time is good, it is a vicious and long lasting virus, but you will get better, as hard as it is to believe right now.

 

20

Hey guys, I’ve been having sharp neck pains and sharp ear pain that comes and goes throughout the day.. is this normal? Also still fatigued and joint pain. 

Hope you’re having a good start to your new year everyone.