I was in hospital for 6 weeks and they never found what was wrong

Digestive health
1

I have been out of hospital for around 6 months now but they never found out what was wrong so was just wondering if anyone has any ideas

So 7 days after my 17th birthday I went into A&E with bad stomach pains and throwing up when I got there they did my heart rate and blood pressure and it was extremely high so they wanted to keep me in and after further tests it showed my infection markers were high and they believed it was comming from around the liver after being in for a week and getting worse and many more blood tests they still had no idea what was wrong I was on constant antibiotics and the only thing new they found out was my gall bladder was enlarged but with no signs of inprooving and no idea what was wrong they discharged me after a week but a few days later I came back as I was getting much worse so they did more blood tests and scans over the next week or 2 and my blood platlets started to get low and my kidney and liver function was going down and I was collapsing so they decided to transfer me to a hospital in a different city and I was put into ICU and while I was in ICU nothing was getting better and my kidneys and liver had basically stopped working and they had done almost every scan and blood test possible along with getting loads of different doctors involved but they where still baffled. Cutting the long story short they put me on steroid tablets and gave me a blood transfusion and everything started to get better and I was let out a few weeks later and they diagnosed me with glandular fever but even my outpatient doctor said he's almost 100% sure it wasn't that and they will probably never know.

So I just wanted to know do you belive it was wrong of them to discharge me the first time with no idea what was wrong

And also does anyone have any idea what it could have been

2

Yes its glandular fever,  I doubt they would say it was without a proven test coming back positive for Epstein Barr Virus, that the correct name of the virus.

​You could be describing my sons's roller coaster ride with EBV, abnormal liver function, very low platelets, down to 12, low white blood cells, they put him in isolation room for a week to protect him from anybody carrying even common cold. and then discharged him with platelets at 20, there is a VERY GREY area there should he have been discharged while his platelets were at that level.  No treatment at that point as they seemed to think that his platelets would improve by themselves.

​Thanks to our local GP, he watched his platelets continue to fall until they got to 12, that level is potentially life threatening, urgent phone call at 7pm at night, take him to the hospital NOW.

​And yes steroids are the correct treatment for very low platelets when they are not improving on their own, son started off on 120mg and as his platelets started to rise very slowly, they started taking him off the steroids, blood tests every week to see where his bloods are going, only up to 38, they are still not happy with that level.

​Now suggesting that he may have an auto-immune, in other words his immune system is attacking his white blood cells, and destroying them faster than his marrow is making them,  

​Local GP tells us he has not run out of options yet, to treat auto immune, if its that, chemotherapy, and some really expensive drugs that he can only get on the public system after they have tried everything else.

​He is in the care of a specialist haemotogist, or blood specialist, our GP is helping with every thing he can think of as well.

​Next step is a platelet transfusion, and then a bone marrow biopsy.

​As I understand it only a very small percentage of people who get EBV about 5% get the very nasty form of it, which my sons seems to have been blessed with, our GP has confirmed this to us.

​It a nasty virus, but there is very little they can do, just like the common cold, anti biotics do not help, very little does, eat lots of protein, and take some multi vitamins to help support your system generally, and keep up with the weekly blood tests so your local GP can watch where your are going with those bloods.

3

Just a note, EBV doens't come back as a positive test when you first have it, they can only diagnose it after your immune system gets up and starts attacking it as I understand it. 

​I do know that my son had about 4 negative tests, and then a positive after about 2 weeks, that's when they decided he had EBV, did 2 MRI's, 2 cat scans, x-rays, lumbar puncture, and 100's of blood tests as they could not find anything wrong with him either, because he wasn't showing normal symptoms of EBV either, so its seems it can effect different people with different symptoms.

​He just had a headache from hell, and sweating like a waterfall, they even had to put him on a drip as he was soo dehydrated from all the sweating, he didn't develop the rash until about 6 weeks into his symptoms.

​Nurses were changing his bed every hour or so, they even had an entire laundry trolley for him I noticed outside his door, and also another trolley for wet bed clothes.

4

Sorry to hear about your son and yes I had bone marrow biopsies and everything and when they did the blood test to check for glandular fever all it showed was it had been activated before or something but apparently allot of people have it so they where never 100% sure it was that as they didn't catch it active in my system but like I said my consoltant said he's almost 100% sure it wasn't glandular fever

5

Hi Kyle,

Good thing is You are not alone and the worst thing is there are no diagnosis yet.

have you had any recent sexual exposure ? even kissing ? have you checked for candida / yeast infection ?

EBV & CMV are common virus, i am sure you will be positive on igg, which shows the past infection.

Whatever it is nearly issue what i am nearly gone thru and some of them who were. you need to follow candida diet.

hope this helps.