Has any of you had bad complications from glandular fever or EBV (MY STORY)

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  1. If anyone has had any serious complications from glandular fever I would like to hear your story because I'm curious as a year and a half ago it put me in intensive care.

THIS IS QUITE A LONG READ, SO IF YOU'RE NOT INTERESTED DON'T READ.

So, a week after my 17th birthday, I woke up and had quite severe stomach pain, a long with that my face looked slightly yellow, I was throwing up and had no appetite as well as diarrhoea. At first I thought I may have appendicitis so we decided to dial the none emergency NHS line, and after telling them my symptoms, I got given an appointment at the walk in centre. Upon arrival , they did my blood pressure and heart rate and they were both through the roof. My heart rate was around 130 and I can't remember what my blood pressure was. After an ECG that came back fine and blood tests, they came to the conclusion I had an infection around my liver so was put on an iv drip and antibiotics. The 1st week in hospital involved ultrasound scans and more blood test and they found out my gaull bladder, spleen and liver were inflamed and my liver function was slightly lower than it should have been. And after a week of none stop antibiotics they noticed only a minor improvement In my blood tests. So after the 1st week I was (wrongly) sent home with an appointment in 3 days time for blood tests at the hospital. While at home, I deteriorated and continued without eating and had really bad diarrhoea as well as throwing up. 3 days later I went back to the hospital for blood test, but while there I threw up everywhere in front of a passing doctor and we explained everything to him, and he advised we to go back to a&e. After again, more blood test they found the liver function was worsening as well as my infection markers dropping and low blood platlets. They ordered a CT scan, as well as a camera..... both ends. Everything came back clear other than again.... the inflamed organs. After 3 weeks in hospital, the doctors still had no idea what was going on, and i seriously deteriorated so they put me in intensive care, and then later that night, blue lighted me to a specialist liver unit in Leeds. While at Leeds, my kidney function started to drop, which intern caused fluid build up all over my body which made moving almost impossible as I put on around 3 stone overnight. They also inserted a Cafiter which is extremely unpleasant. At Leeds, they decided to do a lymph node biopsy, liver biopsy and bone marrow biopsy and everything came back fine which left them again.... baffled. After not eating for 4 weeks they decided to feed me through a tube. while inserting it, I threw up in the doctors eye and the tube came out and I refused to have it re fitted. at this point they were considering dyalasis and liver transplant. They eventually decided to give me an extremely high dose of steroids which eventually made my liver and kidney function go back up and I was discharged from intensive care and put onto a normal ward for a week until finally being fully discharged. After being discharged I was kept on a dose of steroids that I had to cut down every week until I was completely off them and I also had regular check ups until around 4 months ago where I was also discharged from outpatients.

That came to the uncertain conclusion that all this was caused by an extremely rare case of glandular fever. Although my outpatient consultant doesn't believe that was it was. Thankfully tho, there was no lasting damage other than huge stretch marks everywhere that have left me extremely self conscious.

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  • Posted

    Well, physically I recovered fast. By 6 weeks I was no longer igm positive but my monospot was and my ebna was not. So i wasnt acute sick anymore but I wasnt fully recovered yet. That was beginning of January and besides being a little tired I feel normal again. I got sick the end of Nov. But...I developed awful anxiety and depression from mono. I was also diagnosed as having acute stress disorder caused by it (basically short term PTSD, same symptoms). It took me a while to get diagnosed with mono (6 weeks)and my brain went crazy with worst case scenario stuff bc I was so sick. But the mental recovery has been the worst thing I've ever been thru. I have never felt depression or anxiety this bad in my life and I've had an anxiety and panic attack disorder since childhood. I was doing a lot better but my dad passed away last week and it set me so far back. It made it all worse. I am an emotional mess right now. I'm surprised I'm not in a hospital somewhere strapped to a bed to he honest. I just wanna go back to October...I was happy, working out all the time, enjoying life

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    • Posted

      oh s**t, I'm really sorry to hear about your dad. and if you're really feeling that bad then you should definitely try to talk to someone.

      my experience with glandular fever wasn't that bad..... apart from almost dying of course. I never really suffered the after effects other than physical scars the complications caused. that's why I'm not sure if that's what it was. they never actually caught it active in my blood but they could tell it had been active before which wasn't really much help considering 90% of people have had it apparently.

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    • Posted

      Hi Jenna,

      Just wanted you to know I was still thinking about you and hope you are coping as best as possible at this very difficult time for you and your loved ones - remember to look after yourself too at this time that's important and hoping that you can good family / friends around who are being supportive at this tough time. Thinking of you.

      Craig

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  • Posted

    Hi Kyle,

    Oh my what an absolutely awful time you went through, I can only imagine the suffering and fear and pain and worries you must have been going through during those times in hospital and all the awful intensity of everything you faced. I know words won't be able to do justice to how low and horrendous a time that must have been.

    I had glandular fever about 12 years ago and I went through a real tough time with it, although thankfully nothing as horrendous as you and wasn't hospitalised or anything like that. As a person with only limited medical knowledge I could not possibly say if the severity of your symptoms could have been caused by glandular fever, certainly I know for sure this virus can cause real havoc in your body and affect your liver / spleen / glands, but it really sounds like you were pushed to a limit that most people thankfully don't have to experience with this virus.

    I just hope and pray that you are feeling much better now and you are able to get back on track with life again after such a tough time. I believe in God and know it was only down to Him I got through the glandular fever, so I'm believing that you are also going to reach full recovery even if not 100% there yet - hang in there and thinking of you Kyle.

    Things that helped me during recovery from glandular fever included taking vitamins / herbs - a good strong multi-vitamin per day (I take Immunace Extra here in the UK), higher doses of Vitamin C (1000mg to 3000mg per day) and a B100 complex vitamin per day, great for energy levels and nervous system. But of course be wise and careful to check any interactions with other medical conditions / medications when starting any vitamins / herbs / supplements.

    Believing that better times are ahead for you Kyle and what courage and strength you have shown to come through that dreadful time, do keep in touch and let us know how you are doing. The forum here is a really good one and there may be others on here who can share of complications relating to glandular fever that can empathise with your situation.

    Craig

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  • Posted

    thanks a lot for the reply, I appreciate it. funnily enough tho, its wasn't that traumatizing of an experience for me. the worst part must have been all the procedures, like doctors putting things in places no man ever wants them to go 🤣 .but it was a different story for my family, it caused an immense amount of stress for them. at first they thought it could have been the c word and thinking back on it, it never really scared me. I'm not sure if it was maybe because of how ill I was I just didn't process any of it.

    but I can say 1 good thing that has came from this bad experience, it made me appreciate all the hard work these underpaid NHS staff do, and inspired me to want to go into healthcare. so my plan is to go back to college, and hopefully, eventually go to uni, and study to become a paramedic. and if one day in the future I become a paramedic, being in hospital for 6 weeks would have been truly worth it.

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