Can anyone give me any information about listeria bacterial meningitis?

[Dynomite]

I just learned this is the kind I got in April 2013. I've always wondered how I got it.

[Gabr]

Hi yes I too had Listeria Meningitis plus Encephalitis in Feb 2013. Its very rare & my consultant had only treated one other case in 10 years so I am pleased to hear from someone else who has suffered from the same illness.

Listeria Men. is caused by food ie something we ate, I see you live in USA I'm in Bath England so no connection there! We had a holiday in Thailand & Cambodia i during the month before my illness but have been told that equally I could have contracted it in the UK as Listeria lives in the soil here.

No time to type more will continue later. Nice to hear from you!

[Dynomite in reply to Gabr]

Hi Gabr, yes I was told in the hospital that it is very rare but my husband couldn't remember the type and if I was ever told I didn't remember. I've read it's food born, but the docs in the hospital said it was a droplet exchange. I'm kind of confused by this and just want to know how I contracted it do I can avoid it ever happening again. About 9 months before I got sick there was a listeria outbreak brought on by contaminated cantelope, several people died, but other than that (and I think that's too long of an incubation period) I'd never heard of it.

C

[Gabr]

Hi there,

I was told that the incubation period for Listeria Men./ encephalitis is 90 days so it's probably something we ate up to 3 months before the illness showed itself. The doctors told me that listeria is found in the soil so it could have been on unwashed vegetables or salad etc also in some soft cheeses or pate. Some people can get Listeria & just have a slight upset tum or not even know they have it. Unfortunately in my case & yours we were unlucky & the infection spread to the brain. Someone once said to me you have not been unlucky you have in fact been very lucky to have had this illness & survived. This is very true & I do try to remind myself of this all the time.

I hope you are continuing to improve albeit a slow process. For my up to date symptoms see my reply to Kazzy on balance problems

Keep strong & positive x

[Dynomite in reply to Gabr]

I did see that, I'm sorry your balance is so bad, I was worried about the escalator thing but when I came to one I was fine. When you got really sick did it come on really fast? Did you think it was food poisoning or the flu or did you know it was something really bad? I had the stiff neck for about 8 weeks before I got really sick and headaches a couple weeks before. I'm just curious how similar our cases are being both listeria. And do you have any lingering pain issues?

[Gabr in reply to Dynomite]

Hi Dynomite

In answer to your questions, we were back from our holiday for a couple of weeks in February when I had a small op on my foot. During the two weeks following this my symptoms came on gradually. The very first thing was a numb feeling in my bottom lip. Also I had trouble concentrating ,my eyes wouldn't seem to focus properly. Then I developed a bad headache, our GP who visited, said she thought I had a migraine which would explain the headache, the problem with the eyes & the numbness which by now was spreading up my face. I also felt as though I was on a boat all the time with unstable balance, this I put down to wearing the thick surgical boot following the foot op. Never did we dream I had anything seriously wrong until one night I developed a really bad headache, vomiting, stiff neck & very high temperature also I was unable to stand or walk. At this point I was rushed into hospital & listeria meng/encephalitis was later diagnosed.. My life was saved by the quick action of the A&E doctors & 12 weeks of very aggressive antibiotics. You also asked about residual aches & pains. My main problems now besides the balance issues are that I feel quite disorientated when I concentrate on any one thing. I also have lost muscle tone particularly in my arms & get aches & pains in both arms & shoulders. My legs are weaker too & I am trying to build up strength walking & using my exercise bike. Apparently it is recognised that loss of muscle tone is a consequence of the illness. Saying all this though I have improved greatly over the past few months & hopefully this improvement will continue. I hope this helps & wonder if you suffered similar symptoms?

[Dynomite in reply to Gabr]

Hi Gabr,

I have the same issues with muscle loss, my legs are doing much better I can now walk a couple miles. My arms and shoulders however are a whole different story. My shoulders hurt all of the time, my arms are always sore like I lifted weights the day before and my joints in the shoulders, elbows , wrists and fingers hurt most of the time. My balance seems to be improving as I haven't fallen in a while but I'm still dizzy all the time but I think I'm getting used to it. And I totally know what you mean by being disoriented when trying to focus (or hear in my case) on any one thing. The harder I try the more illusive it becomes. Do you work? I've been trying to return to our business and it's oh so much harder than I expected. But I'll just keep on pressing forward and hoping for more recovery as time goes on. I find the less I dwell on it the better I am. Life is good though

[Gabr in reply to Dynomite]

Hi Dynomite

Sorry for delay in replying. In answer to your question I do work as a GP receptionist ( in a doctors surgery) . However I am still signed off sick & have been since my illness in February. I have now decided to retire. I was 60 yrs old this summer & since being off work ,although it has been a difficult time I have enjoyed the freedom to go away to visit family & a new granddaughter!

I loved my job but although it has taken me a while to come to this decision , it was always very busy & a key part was to multi skill & be on the ball all the time.

I am trying to look upon it not so much that the illness has forced me to give up my work but in a positive way it has opened up new freedoms & opportunities for me to do exactly what I like with my time

My husband is also retired. As others on this site, he has been very very supportive throughout my illness & recovery. I know it was a nightmare for him & all the family when I was very poorly at the beginning & it makes realise how lucky I am to have them.

I hope you continue to recover as I am , being 8 months following the onset of my illness. The dizziness is settling down. I am left with neuro & visual stress but hopefully this will improve given more time. As for the aches & pains I hope to get back to the Gym soon to regain my physical strength which has been lost

As you say life is good & as all this makes you realise- very precious!

With best wishes to you & to all who have experience of meningitis/encephalitis

Gill x

[Ming2405]

Hi Dynomite, my darling hubby Al contracted Listeriosis Meningitis and was like most VERY lucky to survive. He had x3 weeks of amoxicillin iv and was discharged 3 stone lighter and a very frail man. He suffered major hearing loss in his left ear and had related balance problems but his determination aided his recovery and within 5 weeks we were looking at his returning to light gym exercise. His luck however did not continue as he once again beat the odds but this time in a negative way, developing hydrocephalus ( only 3% of listeriosis meng patients are known to have this added issue). We spent most of the summer in Charing Cross hospital as the doctors tried to find a Shunt suitable( drain). He is once again home but we fear he will have permanent damage in the form of short term memory loss and disorientation. Don't be disheartened by my post, had he not developed the fluid on the brain, I feel he would have made an almost 100% recovery, so stick with it! listen to your body when it is tired! feed it well and try to keep a positive stance. Big hug and all the best for a full recovery. Xx

[Dynomite in reply to Ming2405]

Thank you for your reply. The crazy thing about listeria is trying to figure out where you got it, that's been driving me nuts. I was very healthy before contracting it, now I'm just trying to get some muscle strength back, the legs came around pretty quick but the arms are very weak and slow to return. I'm sorry to hear about the added issues your hubby is now facing. It is such a rollercoaster recovery isn't it? One week I feel as though I'm almost better (with the exception of the hearing loss, dizziness, and balance issues), then the next week I feel like I just got out of the hospital.

Best wishes to you and to your hubby's recovery.

C

[Ming2405 in reply to Dynomite]

If the only true thing I have from all this , it's for the suffers listen to their body. Al tried to push it too fast on occasion. Like you he was a very healthy man, albeit 66, he was a x4 gym bunny a week and walked 10 miles stretches with me as I prepared for a charity trek. The docs acknowledge the 3-90 days incubation but still feel the most recent trip to Spain (4 days begone admittance), most likely to be the time he contracted it. We are currently in A and E after a fall backwards down the stairs, so please please listen to your body's limitations and take care xx

[Gabr in reply to Ming2405]

Thanks for the advice I hope your husband is ok & not hurt following his fall. Yes I think we need to push ourselves to a certain extent but also be kind to ourselves & listen to our bodies when they tell us we need to rest. Good to hear stories on here from other Listeria Meng. Survivors.

[Dynomite in reply to Ming2405]

Hi Ming 4025

Sorry to hear about your hubby, I can totally understand how he fell, I've come so very close a few times, usually when I turn to the right and look over my shoulder, I wonder if that's what he did. I don't think I'll ever figure out where I got it... I've found that pacing myself (not always possible) is the best I can do, it's hard I've always been a doer not a watcher. I hope your hubby gets better, he's lucky to have you and I'm lucky to have my hubby, he helps keep me strong. I know it's not easy for him as I'm not nearly the woman I was before I got sick and he has to work a lot harder. Best wishes to you both.

[Ming2405 in reply to Dynomite]

Thank you Dynomite, sounds as if you have the same strong spirit my dear Al has. I am not going to lie, it can be hard from the partners perspective but you can rest assured your hubby will just be so thrilled you survived this awful bug. Life wil require adjustment but if you have love, you can do anything. Fingers crossed for a speedy recovery. Always here if you need to chat xx