Lost faith in the medical profession. Bacterial meningitis.

[Bluecal]

Hi, I started feeling ill on 12th February 2023 with high fever, uncontrollable shivering, projectile vomiting and diarrhoea. Thought I had food poisoning, then the headache hit me which I put down to dehydration from the sickness. After 3 days I felt I was getting worse and made contact with GP practice. They called me and weren't happy with the symptoms and asked me to go to accident and emergency. My adult daughter took me there and the triage nurse said I had to go because the doctor said it was a GP problem as I'd been ill for 3 days. It had taken me all my effort to get dressed to go to the hospital and I just wanted to lie down, so went home again. That night the headache was so bad I couldn't even sleep a little bit through it, so called 111. Woman told me it sounds like a migraine and to have a candlelit bath to relax. Obviously didn't do this as I could barely make it to the toilet by this stage. I then started getting blisters all inside my mouth, on my lips and hands. I messaged my dad asking if he could take me to a walk in centre as I couldn't get a GP appointment. He came over and drove me straight to a different accident and emergency. I waited 13 hours and was told they were admitting me as I seemed to have viral meningitis. They did a lumbar puncture and a days later came in to see me saying it was all clear, there was nothing wrong with me, I could go home. By this stage I was worse than when I'd been admitted and was delirious, confused and hallucinating. My dad went mad and said it may have come back clear but there is clearly something wrong, I'm not taking her home, you need to get someone else to come and look at her. They called a different consultant who did an assessment and immediately put me on iv antibiotics and did more blood tests along with asking for further tests from the CSF from the lumbar puncture. Eventually came back that I had bacterial meningitis and sepsis, they had only tested for viruses and hadn't even had the results all back when they wanted to discharge me. I spent 10 days in hospital and due to the bacteria they found bacteroides fragilis, they did scans to see how it had got from the bowel into the blood and found I have diverticulitis. I am now back at home and feel better than I did but was basically discharged with no information or follow up appointments/ plan. I was told I'd get an appointment through in the post for a colonoscopy to check for bowel cancer but that it is. Nothing, no advice whatsoever. I have the worst night sweats ever, I went through the menopause 12 years ago so I know its nothing to do with that, and these are far worse than those were. I have a terrible pain in the back of my chest which I thought I was having a heart attack, they did an ecg and said it was normal, but noone can tell me what this pain is - they've guessed its thoracic spine sprain but who knows. I'm dizzy, permanently tired but can't sleep, and can't seem to hold a verbal conversation very well as I can't concentrate on what someone is saying to me. My youngest daughter is doing her a levels and i just fall asleep whenever she tries talking to me about her work, as I cant process what she is saying. I'm irritable and crying all the time. This just isn't me. I know its early days and I know I'm really lucky to have escaped as unscathed as I have.

Has anyone found anything that helped them no matter how bizarre, I'm willing to try anything. Ive been drinking what looks like swamp water trying to build up immunity, good gut bacteria etc. Ive been eating very healthily and doing all the things I can think of to try and help. Ive been into meditation for many years and have tried to do this but have been fairly unsuccessful although I keep trying. Ive been trying to walk a little each day to get some fresh air and a little exercise but this exhausts me. Any tips would be greatly appreciated.

[MissisF]

I'm so sorry you have had this horrible experience. I'm afraid that some medics forget that meningitis can affect older people. I had Bacterial Meningitis with sepsis a number of years ago and only survived because my GP was fresh out of training and recognised it. It is a very serious illness. I was on life support for several days, but like you was discharged with no advice whatsoever. Please take a look at Meningitis Now website. You are not alone

meningitisnow.org/?gclid=EA...

and perhaps ring one of their counsellors? I suspect it will take you many months to feel like yourself again. I too had hot sweats (they were horrible) and I think that is something to do with the body reacting to the massive infection you had. I was pre menopausal though so took HRT which helped = perhaps speak to your GP about that? Don't expect too much of yourself. I was 45 and took 6 months off work - I had a permanent headache but it did get better. It seems like you are doing the right things with diet and exercise and I am sure things will slowly improve, but emotionally this is huge so counselling may help? I do suggest you make a GP appointment and ask about the pain in your back. Might it be related to the lumbar puncture? It could be that and will just take time. Good Luck.

[agapelmh]

I'm so sorry. Meningitis is a lot to go through and it is compounded when you feel unsupported, alone, and uncertain of what lies ahead. My meningitis presented very similarly to you and it has only been about three months. I am still on IV antibiotics! On that note you may want to have follow ups and possibly an MRI to make sure all the infection has been eradicated. But give yourself grace and get plenty of rest! The dizziness and balance has the potential to improve especially as the infection leaves your brain and you practice physical therapy and balance exercises. You are very fortunate to be alive and to potentially have little longterm damage. Rest, short walks, and get the support and follow up you need. I was in hospital for a month and still had to do a lot of advocating for myself, and my husband has been playing advocate almost full time as well. If in doubt about something, keep fighting to get in checked out. This is no small sickness. Your body has and is going through a lot. It will get better but it will take time...like, lots of time!

[Quiltergirl]

I just read your post. I hope you are starting to feel better. I too had bacterial meningitis and sepsis, 4 years ago. I had a PICC and IV antibiotics for 2 months. I will never be the same. I was 58 and I had to resign from my nursing job. I was told to give myself 6 months to 2 years to recover. Be patient with your self, get all the help and support you can. I live in the US. I had a Infectious Disease physician and a Neurologist.

[menchild]

I am the greatest believer in homeopathic medicine. Its changed my life. You wd have to consult with a trained homeopath for constitutional medicine. I had bacterial meningitis and sepsis and was ill for a long time. Now can travel and socialise a lot more and have phone chats again. The medical doctors cant help much. Aftercare was non existent. I also had craniosacral therapy and that calmed my nervous system down. I have found sleep and rest help the most. I pace my life and try not to do too much in one day or if unavoidable following day quiet. I have learned to slow down n smell the roses. Be kind and look after yrself. Others dont understand but we who have contracted it do. Good luck.