I survived

[Misslouise]

Hi there, I am 4 years post meningococcal septicaemia. I am looking for others experiencing after effects of the disease. The chronic fatigue is debilitating and has taken over my life. I need answers to who the best specialists are to see to sort this out! To hear from other survivors who know what I'm dealing with would be great too! Sarah x

[Liz-D]

Hi Sarah.

I'm almost 4 years post Meningitis and I have Chronic Fatigue/M.E. In order for you to get a definitive diagnosis, you'll need to go to your GP, they should be able to refer you to any specialist near you. I think I was lucky as the Doctor who was in charge of the CFS/M.E department also looked after me when I was in hospital with Meningitis. I didn't come down with this straight away after the Meningitis, I had almost two years of relatively normal life after I left hospital, but I pushed myself. I started to get worse fatigue in late 2012 and was officially diagnosed in early 2013. In June 13 I had a severe Viral attack that put me back in hospital, suspected Viral Meningitis! It wasn't but it knocked me even further back and I'm now at the point where I can do very little before I'm a wreck. I know every case is different and I hope you get the support you need very quick. Good luck. ❇♥❇

[Misslouise in reply to Liz-D]

Thankyou so much for your response. I couldn't understand how it could get worse in the long term but I'm struggling every day. It's been a slow decline to now which life has hit the pause button. Have you found any answers? Sarah x

[msflem in reply to Liz-D]

I will be 2 years post bacterial meningitis coming in Dec. I have absolutely no support and I'm suffering from depression. I have had depression/anxiety for so long I don't know what normal is. I have requested to make an appointment with a neurophyscologist and hoping I will find some answers. One thing that's really killing me that I have absolutely no energy. If I could just lay in bed all day I probably would, but then if I even try to get any rest my wheels just spin of all the things I should be doing. One wish that I really want is for my family to understand what going through. They don't have a clue about the pain I suffer everyday. They are all miles away from me and it makes it even harder.

I live in Utah and if there is anyone out there who give me a direction on getting into some sort of support group it would be greatly appreciated.

Shell

[Misslouise in reply to msflem]

Hi shell, thanks for the reply I know how hard it is being away from family. Your not alone rest assured! I'm looking for answers to all this so what I find out I'll let you know. Google support groups there in Utah. There's plenty here in Australia so I'm sure you'll find something but even phone or msg contact is helpful. Keep in touch! Sarah x

[Jcrome]

Hi Sarah,

I'm only 3 months post vm and the fatigue is the worst thing for me - headaches aren't too bad but I'm off work with exhaustion and no sign of getting much better other than a few bright days here and there. I think in many ways the fatigue crosses over from Meningitis recovery to the same issues lots of other fatigue sufferers have, so I've been reading far and wide about other conditions and treatments.

I'm not a doctor by any means but from my research recently can I suggest a few avenues that I am also looking at (everything below is borrowed from books or blogs)..

1. Dr Sarah Myhill is a chronic fatigue expert, a former GP who has now dedicated her life to fatigue treatments. She runs a private clinic although she is not currently taking new patients. However her book gives a really good understanding about fatigue, and she along with other experts now uses a blood test to measure the Mitochondria system (the energy production) to prove physiologically what the level of fatigue is. Her work shows that patients with severe fatigue have the same mitochondria blood levels as chemotherapy patients. Her book is really encouraging and there are a number of vitamin deficiencies that are common with fatigue patients, which can be addressed, and other anti-oxidant supplements which she says can really improve things. See her website drmyhill.co.uk/ and her book on there.

2. Adrenals - Our adrenal glands, which produce cortisol and DHEA, are absolutely essential to our body keeping going and having energy, along with lots of other essential functions. Most fatigue sufferers, or a good chunk, have failing adrenal glands to some extent, known as adrenal fatigue. Failure of the glands can happen over time if you have been overdoing it/stressed for a pro-longed period, or can as a result of a serious illness/trauma etc. It supposedly can be addressed with rest, diet vitamin supplements, and in some cases it can be necessary to take a cortisol hormone tablet to help support the system. This website explains it in more detail.. adrenalfatigue.org/what-is-...

3. Qualified nutritional therapists, or Functional Medicine practitioners, can order lab tests which doctors often won't do to measure things like your Mitochondria system, Adrenals (it's a simple saliva test which costs about £100). It might be worth looking at local nutritionists to consider ordering one of these tests - it can give you the peace of mind to know there is some proof that physiologically your body isn't quite right, and can narrow down what you need to do. I've done the same and am waiting on a few test results - it is expensive but I am the kind of person who wants to know I've done EVERYTHING I can

Unfortunately with fatigue the main NHS treatments in UK still involve CBT, counselling and anti-depressants, which it seems are not often that effective, but what Dr Myhill suggests is that it is usually a failure of the mitochondrial system rather than mental health which is causing the fatigue.

Also, I went to have a blood test about 6 weeks ago as I have been losing weight, and the results showed that my Thyroid is in bad shape, and I'm now having to take hormones. I've never had an issue with my thyroid, and one of the key symptoms is fatigue, so I am hoping that once they started correcting my hormone levels this will be of some help. It might be worth asking your GP to run a test for this just in case. While you're there, it could be worth persuading them to also run a few basic vitamin deficiency tests, such as B12.

Hopefully this gives you a few options to narrow down things - I can't say from any experience that these treatments work, but I trust the work of Dr Myhill as she has run a number of research studies which are controlled and credible which seem to show her work is helping a lot of people.

Personally I have started a PALEO diet, which is caveman style eating, as its kind on the body and doesn't rely on sugars or refined carbs for energy, and I am having green smoothies every day along with a daily vitamin and some other supplements. Too early to tell if its working as I imagine progress takes months not weeks, but it's keeping me sane to know I am putting things in place to be as supportive of my body as possible.

I hope that helps, let me know any thoughts you have...

[Misslouise]

Wow, thankyou so much for that reply. I have had the blood tests and my thyroid was high but GPs and limited here with levels to be able to put us on medication. I'm now having b12 shots, first one was great but she won't give me more because I'm not deficient in testing. Will definitely get Sarah's book cuz I'm leaving no path uncrossed! Will post an update when I've been back to melb for specialist treatment, thankyou again, Sarah x

[legless7397]

I am now 8 years post meningococcal septicaemia, as a result lost both legs below the knee, I was back at work on a phased return and it took about 3 years before I was able to return to full time hours, the fatigue lasted quite some time and I have had a number of minor operations on the residual limbs, but still here to tell the tale.

Recovery is different for all of us some get through quicker and easier than others, my recovery was spent not looking at what I couldn't do I looked back over the previous weeks and saw what milestones or achievements I had made and it never stops, I recently fell in the garden and I was surprised at how quickly I was able to get back up, not the easiest thing to do when on prosthetic legs.

[Covenham]

Louise hi

I know I'm a rather late leaving a reply here but I've only just seen your post and wanted to say that I totally relate to where you are - well, where you were 10 months ago when you write it actually. I sincerely hope you've found help by now.

Currently, I'm 4 years post Viral Meningoencephalitis for which I was in Isolation in hospital for two weeks. I couldn't 'get my head around' how I was feeling worse four years on from being discharged! By worse I mean, the chronic fatigue, recurring chest infections (I had been diagnosed with a chronic lung condition called Bronchiectasis five months after being discharged from hospital with the Meningoencephalitis).

I'd lost all interest in life generally, I'd become almost housebound, rarely socialising and my family didn't seem to understand what I was going through - in short, it's been a nightmare!

However, I was finally (after 18 months!) sent to see a neurologist who really pushed things forward and one of the best things has been a referral to see an Immunologist. He diagnosed me with M.E. only 2 months ago but hey, I now have vitamin B12 injections weekly (they'll go down to once a fortnight soon) and I take daily remedies: Magnesium, Co-Enzyme Q10, Ginseng, Echinacea and L-Carnitine to help support my very compromised immune system.

I know now that I won't ever go back to being the person I was before that dreadful day in August 2011 but at least there seems to be a plan to action to help me get some of my life back. I feel very angry and also sad at times that I've lost the last four years of my life but I know there are others out there who have suffered far worse than me.

Please Louise take courage and know you definitely are not alone. This is a great site for information and caring support. Good Luck and Good Health. X

[Misslouise in reply to Covenham]

Left me in tears... Will write back when I've consoled myself.. X