Epstein barr virus / glandular fever. Please give me hope!

[Shel8487]

Hey has anyone tested positive for this please?

I am 27 had my baby 6 months ago was very healthy before and during pregnancy. We caught covid just before Christmas. 1 month later I started getting jaundice and extreme body aches a few times a week. A month on it was daily I was dizzy in so much pain I had to temporarily move In with my sister for help with my baby. Doctors kept telling me its probably exhaustion from being a new mum (even though my baby sleeps a solid 9 hours a night) it took me several attempts of crying down the phone for them to take me seriously about the pains in my body. My liver tests come back billirubin was high not caused by gilberts disease. Still told me not to worry it's probably just one of those things and it will get better with time.

I then went privately to see a hepatologist who ordered 10 tubes of blood to test everything and scanned liver. He said it has come back that I have extremely high igg antibodies for epsom barr virus 750 to be exact and he told me antibodies are only usually around the '20' mark so he is very shocked.

He told me this is more than likely the cause and I need to rest as much as possible and he will re test me in a few months to see if they are coming down. Apparently hes never seen such high antibodies for one virus before and is puzzled why.

I feel so horrific could someone please give me hope. I feel like a failure as a mother I'm in bed half the day and should be enjoying and doing so much more with my baby its breaking my heart. I'm in so much pain. I can be fine for a few hours then out of nowhere feeling dizzy bones throbbing etc feeling terrible. I an wondering if covid ended up setting this off for me? They tested all my vitamins and other things and that was all normal range.

I have seen this can go on for a long time does anyone have any tips to help please? It's so hard not being able to enjoy my maternity leave with my baby I feel like I'm being robbed of time with her because of how I'll I feel :(

Sorry for the rant

www.google.co.uk/amp/s/www.dailymail.co.uk/health/article-9358477/amp/Why-struck-Long-Covid-really-suffering-glandular-fever.html found this article if anyone is interested and comes across this thread

Didn’t want to read and run OP, I have no idea about these illnesses but what a rubbish situation you’ve been in. I just wanted to reassure you that you are not failing as a mother! The fact that the main thing you’re worrying about is your baby’s well-being despite being in such poor health just goes to show that you’re a good mum

I had glandular fever about 11 years ago.

I won't lie it was horrible and you're doing so well even doing anything with your baby with it.

I tested for it in Feb and had 3 months of essentially bed rest where I did the very basics like food shopping and cooking and that would wipe me out. Then another 3 months getting back to work on a part time basis that started at very few hours and built back up to full time at the end if the three months. I'll admit it was a real struggle and sometimes felt like I was just living to work as I had to rest so much around it.

After about 6 months I felt much better and my fatigue faded for the most part, the nausea and vomiting went as well as my spleen slowly went back to normal.

I've never quite managed to be as active as I was before I had it and I gained an awful lot of weight in the first 3 months that really hindered my recovery I believe.

However my colleague who I must have caught it from was only ill for 6 weeks and no long lasting effects. Which I'll admit made me very angry for a very long time.

Sorry OP not great news from me. I had glandular fever in my late 20s, it took me 6 months to feel better, as in do anything over than work and sleep. This was partly because I still had to go to work everyday, so didn't fully rest up but also because it's a horrible virus. I was diagnosed with post viral fatigue after and misdiagnosed with chronic fatigue syndrome and over 2 years later was still dealing with exhaustion episodes, I've been to many many doctors, years later I did a full blood panel with a private dr and found lots of deficiencies, and finally felt better after a few B12 injections. Honestly I'm a totally different person after recovering from the virus, my energy levels never recovered and I'm over 7 years down the line.

The NHS misdiagnosed with me lots of things through this time but to me it all happened after getting this virus. It's honestly why I'm so careful about covid, it took a year to get my life back and I'm not risking that again!

@CarelessSquid07A I have a very similar story! I caught it at work from an intern who barely had a sniffle and didn't have any lasting effects! I was ill on and off for a long time and have never managed to be as active as I was before. Sometimes I wonder if I imagined how active I was as it's so different to now.

So sorry to hear this Shel.
In 2010, following what we were told was swine flu, my then teenage son became more and more ill and unable to get out of bed. Despite several calls to the GP, no one listened to us about how unwell he was. He was prescribed Tamiflu and spent several days in bed until one day when he turned bright yellow and became delirious. I piled him into the car where a doctor guessed it was Epstein Barr Virus and blood tests confirmed this.
It took a couple of months for him to turn the corner but little by little he got better and is now in full health which is a relief.
I can only imagine how difficult this is for you with a young baby but honestly rest is what your body needs. That plus drinking lots of fluids was all my son could do. Do you have family support in this? Can you be signed off work and carry maternity leave forward? 💐

@aintnocoffeebigenough ah thank you so much that is very kind if you such a sweet message !

@CarelessSquid07A @SunnyAfternoonInWinter @Smileyoriley wow thank you all for replying and being so honest with me..Sounds like this could be a good while until things improve then but makes me feel better in a way that it is ok to feel like this. Did any of you feel better and then bad again? Last week I strangely felt almost back to normal for 3 days then I had a stressful day loosing a family pet and since then its like going back to square one absolutely awful again. I dont know if its coincidence or stress that brought it back on. I am just going to have to try my hardest to rest as much as possible.

Yes definitely there were good days followed by backwards steps that would make you wonder whether you imagine the good days.

It can also cause some seriously low moods at times. When I was first diagnosed I had tonsillitis as well which isn't uncommon and the antibiotics made me feel much worse I was so glad when I stopped those.

Keep your chin up, make things as easy for yourselves as you can, online shopping, cleaner if you can afford it etc. Or even a mother's helper or meals on wheels service.

My partner used to set me up with everything I'd need for the day to be close by so I wouldn't have to get about too much, a packed lunch in the coolest bit of the bedroom, some books beside me in the bed as part of my low mood was sheer boredom. I realise with baby it might not be as easy, but a nappy bag of things you'll need for the day in your room, a kettle etc for bottles if you're using them.

I used to get dizziness followed by horrible nausea so might be worth having baby in a sling when you're around the house in case that becomes a problem. I used to just sit down where I was til it passed and it was much worse on the days I did too much.

It will pass eventually just cling onto that. Hugs x

Yes, my son would try to rally round as he wanted to get back to normal but he definitely had to give in and just not push himself at all. He spent lots of time asleep which will be tough for you, but I think all the suggestions Careless makes are spot on. It didn’t spoil my son’s hectic social life at uni three years later and he’s absolutely fine now! Xx

@Shel8487 yea there were good days and bad, I found that following the chronic fatigue /
ME protocol helped so I didn't try and over do it on good days to help avoid low/bad days. Have you heard of spoon theory? I recommend googling it, I found it helpful to frame my thinking around activities & my days. Check the blood test results to see if you need b12 top ups, it hard to find the injections in the U.K. but I got my private GP to source some and give it to me. Honestly that was 2 years after my virus episode and it lifted my mood and levelled out my exhaustion / bad day episodes.

@CarelessSquid07A the tonsillitis thing is so weird! That was my first diagnosis at A&E even though I had my tonsils removed age 5! When I pointed this out the dr didn't have an answer and put me on antibiotics. Useless.

Very sorry OP, bad news from me also. I recovered full health eventually but had several years of ME following Glandular fever. The good thing is you know what's wrong. Somehow you need to focus on resting and recovering. You're not a bad mum. Rest now and get as healthy diet etc as possible and don't lose hope, you can beat this.

[quote SunnyAfternoonInWinter]@Shel8487 yea there were good days and bad, I found that following the chronic fatigue /
ME protocol helped so I didn't try and over do it on good days to help avoid low/bad days. Have you heard of spoon theory? I recommend googling it, I found it helpful to frame my thinking around activities & my days. Check the blood test results to see if you need b12 top ups, it hard to find the injections in the U.K. but I got my private GP to source some and give it to me. Honestly that was 2 years after my virus episode and it lifted my mood and levelled out my exhaustion / bad day episodes.

@CarelessSquid07A the tonsillitis thing is so weird! That was my first diagnosis at A&E even though I had my tonsils removed age 5! When I pointed this out the dr didn't have an answer and put me on antibiotics. Useless. [/quote]
Mine was terribly obvious, I had a tennis ball sized gland on my neck that came up overnight. I was absolutely petrified so actually initially the glandular fever plus tonsillitis diagnoses was a relief.

I was very lucky to have a great GP at the time and he'd been my doctor since I was a baby. He really knew me and it helped so much. He's retired now and I've never met another doctor quite as good although some are definitely close!

The vitamin B12 injections are available with the NHS, one of my family gets them regularly after being diagnosed with pernicious anemia although the diagnosis did take a couple of blood tests.

I also had B12 injections on the NHS, nothing to do with GF or ME though.

@CarelessSquid07A & @KindaNormal that great. My GP was useless and told me my levels weren't low enough and generally told me all my issues were "anxiety" . I had to go private for anyone to take me seriously.

Sorry - more bad news here, OP. I had it in my 20s and was nearly bedridden for 3 months and had to take things slowly for another 4 after that. (I also had a diagnosis of tonsillitis first and was accused of making it up despite my neck being swollen up ) It still flared up for years every now and then.

Vitamin B helped (osteopath, who had been a GP, recommended it along with vitamin C). I took supplements for years.

It must be very hard with a new baby. Good luck.

Sorry to hear you’re dealing with this with a baby I cannot imagine how hard that must be. I was diagnosed quite young, I was 10. It was truly awful, I think I was ill and off school for over 4 months. I was also very nearly hospitalised, I remember begging the dr not to make me go to hospital and promising to try to eat and drink. I couldn’t keep much down nor had any interest in food and drink. I lost a lot of weight and pretty lived off Mac Donald’s milkshakes which was the drs suggestion. Onto the good news, I fully recovered and didn’t have any long term problems. The only thing which rings a bell reading others experiences is that from my ten age years I do tend to pick up tonsillitis and when I do it is severe, over the years I’ve probably had at least 10 drs try to diagnose tonsillitis as glandular fever as I get so ill with it. Really hope you can take the time to rest, I know the mum guilt sets in, but resting now will likely speed up your recovery long term!

It's probably worth bearing in mind lots of people probably had GF but didn't know it as they recovered fine, so the stories you hear are likely to be from those who has a bad time of it.