So what do doctors know.....

[Jonad724]

about viral meningitis. Well as it happens in my experience not a great deal. I contracted it in July 2002 (July 13th as it happens, sort of stuck in my brain if you see what I mean) and was seriously ill in hospital with the sort of stats that make nurses take a sharp intake of breath. My eldest daughter is a student nurse so i can speak from experience!

When I contracted the illness I was very fit, training for the South Coast Triathlon and generally very active. My fitness and the resillience of my body and heart apparently was a contributory factor in my survival. By the third day of the attack and after much IV morphine and not really remembering much the hospital decided that I was well enough to go home; I wasn't really in a position to argue but I am told that they said I would be OK in a couple of weeks. That was on the Monday, on the Thursday I was rushed back in under blues and twos with collapsing veins, rapidly reducing blood pressure and heart rate dropping. I wasn't kept it but was sent home later that night. Fortunately I had BUPA and was able to see an eminent neurologist quick quickly afterwards who sent me for a brain scan and concluded that I was by no means stable. He complained to the hospital and ordered me to stay in bed for six weeks, moving as little as possible and with instructions to me my family to call 999 if I felt dizzy, light headed or was difficult to rouse.

After the six weeks I felt very tired, very emotional and could barely walk. The locum GP at my surgery who saw me to sign me off said that I was obviously malingering as the effects of meningitis should clear after a month at worst. At which point I asked him point blank if he had ever treated a patient with VM, following a bit of waffle and a bit more pushing he finally admitted he that he hadn't. Duly pointed in the direction of the Trust's website I made an appointment to go back and see him the next day. Voila signed off for a month.

Then I had to repeat the whole exercise again, and again and again. Welll I say I in all of this but I don't actually remember and it was my wife that did everything but I'm sure you get the drift.

In December I went back to work, not really out of choice but my salary had been cut because I had been off work so long. I was advised not to undertake any strenuous exercise for up to 5 years because of the risk of instability in my brain. I had long periods when my brain 'dropped out' and I didn't know where I was, more than once when speaking in public, and even now I have to watch my working hours.

I see many people that have had VM after me (there's a Facebook group called 'I had viral meningitis' who have had the same experience as me, doctors that think it's either minor or they'll get over it in a month. 9 years later I still have side effects (headache, tiredness, mild photophobia,) and I have developed odd intolerances to things like cocoa and alcohol. Last year I was diagnosed with Mollaret's Meningitis which the doctor didn't know about either. So what do doctors know? Not as much as you'd have thought and don't be afraid to challenge them as say 'What do you know about viral meningitis and have you ever treated someone with it'. That way you'll see that you need to educate them to get the treatment you should have and a better understanding of this illness.

[JohnFionaEllie]

I have to say that our family has had a totally different reaction and experience from doctors and I really feel it all depends on the doctor / consultant who is on duty the day you are admitted to hospital.

My little girls of 8 yrs old has recurrent pneumococcal meningitis - bacterial meningitis and has had it twice - yes TWICE! The first time it was spotted immediately by ambulance crew and the hospital team they had on standby on her first admission in January 2007 - their quick thinking and fast work literally saved her life. We didnt have a clue it was meningitis - there was no rash. The consultant in charge was a locum from South Africa and knew instantly what to do - i.e what drugs to administer - she was given both aciclovir and ceftriaxone via IV until the lumbar puncture confirmed it was bacterial pneumococcal meningitis. She was then kept on ceftriaxone. She was in hospital for 2 weeks solid and then came home but had to return daily for another 2 weeks for her daily IV dose of ceftriaxone. It took a good few weeks for her to build her strength and we had temper tantrums (understandably) tears, wet beds and general tiredness constantly. She was given penicillin for 2 weeks to help keep away any other bugs and build her immune system up.

The 2nd time it was us - her mum and dad - who recognised the signs and rushed her straight to Barnstaple Hospital in July 2008 - we were on holiday at the time in Woolacombe. At first, they had suspicions of it being swine flu (the sysmptoms are very similar apparently?) but we arguably maintained to doctors and nurses that we know what it was and 'it' was back for the 2nd time and they did listen to us and put her on the ceftriaxone & aciclovir again until the lumbar puncture confirmed again it was pneumococcal - again. They had never seen a person who had had this horrid illness twice but the consultant liaised with Bristol intensive care to maintain her treatment. We were briefed to expect the worst one evening as her stats dropped rapidly and unfortunately she was too ill to be airlifted to Bristol intensive care and was kept at Barnstaple. The nurses were fantastic and kept a vigil morning and night by her bedside whilst we tried to sleep and rest. It wasnt until the fourth day that she began to come back to us - thank God. The consultant then advised that they were going to take her off the Ceftriaxone and administer Benzyl Penicillin as the bug seemed to react to this. I was a little concerned but trusted them as they had managed to save her before.

We were then transferred back to the Leicester Royal Infirmary - near where we live - but they immediately put her back on Ceftriaxone - which we thought was odd - shouldnt all consultants know the same way to treat this?

After another week in hospital she was discharged. We queried the fact that she hadnt been given any penicillin again but we were advised it wasnt needed.

We visited the outpatient department every three weeks to have bloods checked and general health checked. It then became apparent that for some reason, she had a resistance to building her own antibodies against certian strains of this illness (there are 100's) and so has been on a double dose of Penicillin twice a day ever since. The Consultant's at the Leicester Royal Infirmary have ensured that her eye sight, hearing and general bodily functions are all working well and she has been checked for a CSF leak also.

We are now on a yearly check and blood test check - if it is noted that her antibody levels have dropped, she will have the vaccines again to aid in building her resistance up. It still worries us that she has no antibodies to certain strains of this illness, but we have been advised that by taking penicillin every day it is maintaining a 'belt & braces' approach.

I really believe that doctors and consultant seem to work differently against this horrid illness and have their own beliefs on what works BUT as it is a matter of life and death when this strikes, I would confirm to anyone who has a child, father, mother, friend suffering from this illness to question the doctors again and again to ensure the right treatment and aftercare is given. Until you have been through it, I think you really dont know what to do........

[Jonad724]

That sounds like you went through a lot and I'm pleased your experience was better than mine. I was though talking specifically about viral meningitis which the medical community is by and large not up to speed about at all. Unfortunately my experience is not rare with most doctors dismissing the after effects or putting them down to stress psychological factors. It's not until you find s neurologist that has seen it before that things improve in my experience.