Meningococcal y strain

[lwhite6]

I am recovering from a bacterial form of meningitis meningococcal y strain. Apparently the y strain is extremely rare so there is very little information about this strain. I was wondering if there was anyone else who has had this particular strain?

[StrawberryCream]

I had Bacterial Meningitis and Septiceamia but the stain was never diagnosed. I would suggest you contact the Meningitis Now helpline because they would probably have info about the 'Y' strain. Regardless of what strain you had the after effects of Bacterial or Viral meningitis are similar with some with recovery time being lucky and experiencing a full recovery or having some degree of ongoing problems with a few of us having life changing after effects that will always impact on our lives as disabilities.

I am wondering whether you would like to share more about what happened to you and how you are now?

Best wishes

[lwhite6 in reply to StrawberryCream]

Hi again, I have already contacted the meningitis now helpline - it was them who told me how rare it was and they don't really have specific information on the y strain.

Here's my story ....

I am 41 years old, married with 2 children. On Sat 3rd Jan this year, I had what I thought was a migraine so I took some medication at about 4pm and went to bed to try and sleep it off. This is the last I remember until 4 days later waking up in ITU. According to my family after going to bed that evening I deteriorated rapidly - clearly in a lot of pain, high temperature, cold hands and feet, talking rubbish, very confused and then I had a seizure. I was rushed to hospital by ambulance and started on antibiotics that night. Sunday morning I was sedated and put on a ventilator before having a lumber puncture which confirmed menninchocal meningitis. Whilst in ITU I had 2 more seizures. Anyways, I finally came round on Wednesday and that evening was transferred to a ward. My memory was awful - I couldn't even remember my children's birthday, I had no memory of Christmas or new year and I couldn't even tell the time. I couldn't walk, my speech was slurred. My family thought I was brain damaged.

I spent a week on the ward and with the help of the physio got myself moving. My speech and memory improved.

I am now at home recovering - moving around much better, with the aid of a walking stick. I get so tired all the time though. My memory has vastly improved now. I sometimes need reminding of things but as time goes by I am hoping it will improve.

I am a bit concerned about by hearing, but I am waiting for an audiology appointment. Also waiting for neurology appointment.

That's my story xx

[StrawberryCream in reply to lwhite6]

Hi

I didn't know that you had already contacted Meningitis Now so am very sorry for that unhelpful information. I have just looked up Meningococcal Y on meningitis.org which is the Meningitis Research Foundations site and they have some info about it world wide and as you say in the UK it is relatively rare but has been some increase. I not aware of anyone else on here that has had that rare strain but even so there could be someone who will let you know that they have. However, there are lots of people who on here who have suffered Meningoccal Septicemia or Bacterial Meningitis who's experiences will not be dissimilar to yours and can identify with your recovery issues regardless of causative strain.

Thank you for sharing with me about what happened to you. Thank goodness your family quite quickly realized that you were seriously ill and called for an ambulance. That will have saved your life and hopefully a more positive outcome with hopefully not too much in the way of long term after effects as it was diagnosed as Meningitis and treatment was started ASAP. I too was virtually in a coma on arrival at hospital but my coma then went on for 3 weeks. The confusion, slurred speech, extreme weakness etc is usual when we come out of a coma having been so seriously ill. Likewise those closest to me were told I may be mentally and physically handicapped but clearly you and I were made of strong stuff and we fought back against the illness. Recovery is slow and does take time and you have to take each day at a time. It sounds as if you have already done amazingly well if it was only the 3rd Jan that it all started. Your strength will further improve and you need to give plenty of time for your body to rest and sleep. Again the fatigue is very normal when our bodies have been ravaged by such nasty infection. It takes weeks and months and sometime years to recover not just a matter of days like with the flu (and sadly many medical professionals think). Am pleased that a hearing test is being arranged as that is often overlooked as it is not always realized that Meningitis can damage the hearing. You have already made great progress with your recovery and there will be further recovery yet. I note that you have said you had seizures at the time of inflammation and infection in your brain. Although that may not occur again as epilepsy, if you are a driver, are you aware that you need to let the DVLA know and should not drive even if you have recovered enough that you feel well enough to do so until the DVLA advise that you can. If you do drive and are involved in an accident you will be breaking the Law and invalidate your insurance even if it wasn't your fault.

Best wishes x

[lwhite6 in reply to StrawberryCream]

It really helps to speak to someone who has been through the same as me. Apart from the medical effects sometimes I struggle emotionally. When I think about my husband and two beautiful girls seeing me like that and not knowing if I was going to pull through brings me to tears. Also, my mum said that one day when she came to visit me there was a machine displaying a red line, it was explained to her that it was a good sign because that line showed I was trying to breath for myself. The next day she came the line had gone, she sat there willing for it to come back. I just find it really hard thinking my family had to go through that.

I was wondering how long ago you were ill and if you are suffering any after effects?

I know about the DVLA. I have already contacted them. I have the form here to complete and send back

Xx

[YWurri]

My story is v.similar to yours lwhite6, didn't want to read and run but no time to reply properly right now.

I'll reply properly later, but you're not alone.

[MNClaireD Partner Meningitis Now]

Hi Everyone

Hope this will help:

Meningococcal meningitis is caused by a bacterium called the meningococcus. There are five main groups of meningococcus that cause disease around the world -– A, B, C, W and Y.

In the UK Group B is the most common strain of meningococcal disease. Groups W and Y have been rare causes of meningitis. However, over the last few years, cases in the UK caused by these strains have been gradually rising. The cause for this is not known.

Group C is now rare in the UK as we have a very effective vaccine given as part of the childhood immunisation programme. Group A is hardly ever seen in the UK, but is more common in other parts of the world e.g. sub Saharan Africa.

All these "groups" cause what we call meningococcal disease. Meningococcal disease describes two major illnesses - meningitis and septicaemia. These can occur on their own or more commonly both together. The signs and symptoms, treatment, recovery/after-effects are primarily the same for any type of meningococcal disease.

Hope this helps to explain the Y question.

[StrawberryCream in reply to MNClaireD]

Thank you Claire for your very helpful explanation of meningococcal meningitis and the various strains. I was told I had Bacterial Meningitis & Septiceamia but the strain was never confirmed because the specimen was 'lost' on the way to the lab! Must be a very big pile of lost specimens lurking somewhere in the hospital cos I've heard this loads of times when I was a nurse! But was def Bacterial and was treated as such. Does this mean that it also can be referred to as meningococcal meningitis or is bacterial meningitis & Septiceamia different??

Have only just stumbled across your response to this post stream hence my delayed query.

[MNClaireD Partner Meningitis Now in reply to StrawberryCream]

Hi Strawberry Cream

Most cases of bacterial meningitis and septicemia are caused by meningococcal bacteria. If your close contacts (anyone living in the same house as yourself at the time you became ill) were offered antibiotics at the time of your illness, then the doctors would be assuming that this was meningococcal.

However, there are other types of bacteria that can cause both meningitis and septicemia (e.g. pneumococcal). So the term meningococcal is used when there is confirmation or a high suspicion that this was the underlying cause.

If the cause is not found e.g. lost specimen (!) or commonly because someone has been given antibiotics before a lumber puncture has been performed affecting the results (often a lifesaving necessity), then the doctors are likely to use the broader term of bacterial meningitis and septicemia

Feel free to send me a personal message if you need any further info.

[YWurri]

Hello lwhite6

Just wanted to tell my story, and let you know that I too feel bad for putting my family through what happened, even though it was not our fault.

I was booked in for a planned c-section in January 2014, as had a crash section with my first baby 3 years previously and wanted a "nice, relaxing" experience. I was 32, healthy, and the baby was delivered without complication.

Apparently. I only say that, because I have no memory of it. I had my beautiful baby boy one lunchtime, and the next morning I was in ITU in an induced coma due to severe bacterial meningitis. I woke a few days later very confused, memory wiped (I too couldn't remember Christmas or New Year) and upset. I didn't know my name, where I worked, or that I'd had a new baby.

My memory came back remarkably quickly, but the days just seemed to drag in hospital. Every time I napped and woke, I thought it was a new day. It was all very scary, but after 9 days of strong IV antibiotics, I was more compus mentus and was able to meet my baby for the "first" time (I don't remember the birth or holding him for 9hrs after). I was discharged after 14 days, and completed my recovery at home with my supportive husband and 3 year old son.

I too have felt very guilty about missing the first two weeks of my baby's life/two weeks of my older son's life, and very emotional. It's all normal, though not easy.

You are doing remarkably well considering it was only a few weeks ago. At this stage, I cried and slept a lot (the brain's way of resting is sleeping I found).

A study was conducted on my case, as the strain/cause was so rare - only a handful of people have had it globally. The cause of my bacterial meningitis was Streptoccocus S Salivarius, potentially traced back to the anaesthetists' oral flora (he wasn't wearing a mask - it's not routine in UK hospitals apparently). We can't be 100% sure due to potential contamination of the sample sent to the lab (no mask worn by the person analysing it...!).

I wish you and your family all the luck in the world; I've made a full recovery and now just think I'm one of the lucky ones x

P.s Keeping a sense of humour definitely helped me!

[lwhite6 in reply to YWurri]

I'm so sorry it's taken me ages to reply to you, I've not been on this site for ages.

Wow, what a story you have - sounds like such an awful time you had! I can only imagine how upsetting it was for you when it should have been a time of such joy.

I'm so pleased you have made a full recovery! I'm well on my way there!!!

Louise x

[x-Jemspark-x]

Hello,

I've just read your post asking if anyone else suffered from y strain of meningitis, which I did in October 2013, like you I got the pain in my head which I thought was a migraine, and deteriorated very quickly. I haven't spoken to another person who has suffered the same strain as me so i'm glad you posted your story. I hope everything's going well for you

[lwhite6 in reply to x-Jemspark-x]

Sorry I didn't reply to your message, I haven't been on this site for some time.

Everything is going pretty well for me now. I just lack energy and fitness now which I am trying to improve by making sure I go walking or for a bike ride every day. I seem to have put on quite a bit of weight, I'm hoping this is due to the ridiculous amount of steroids they pumped into me and it will rectify itself soon. I still get tired very easily and have to make sure I pace myself with everything I do. Sometimes I overdo it but I just have to learn to slow down a bit.

I'm coping pretty good with day to day life now and am starting to come off the epilepsy meds now - with any luck I can get my driving license back in a couple of months.

I see you were ill a couple of years back - are you fully recovered now or have you been left with any long term effects?

Louise x