Bacterial meningitis from listeria monocytogenes

Dear all,

My girlfriend was diagnosed with listeriosis 4 days ago. She was treated with antibiotics. A day after that, she felt her arms shaking and had more tests done. Doctors said it was BM and she was transferred in an isolated room. She has been on IV antibiotics and a few other drugs ever since. This is the third day she's going through that.

Her symptoms include fever, headache, pain in her arms, light sensitivity, drowsiness and dizziness. Last night she told me the fever had dropped. The doctors said that her condition is stable, but the inflammation isn't retreating. She is in a lot of pain. She is really scared and tired, but her mental condition is really good, she has full consciousness at the time being.

Unfortunately, I can't be there for her and I am really scared for her sake, but her family is by her side. That's why I am asking you. Is there anything you can tell me about her condition based on those facts? Also, what are the signs of improvement that I can look for?

I am losing my mind. She's the love of my life.

Please let me know. Thank you so much.

Antony

11 Replies

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  • Hi Antony

    It is a very frightening and difficult time for you with your girlfriend seriously ill with listeriosis and bacterial meningitis. It is a relief to hear she was in hospital already receiving antibiotics when they also diagnosed that she had developed bacterial meningitis. Meningitis is not like illnesses such as flu for which you take medications to keep your temperature down and to relieve aches and pains. Meningitis takes longer to respond and the recovery is much longer too. You have to take each day at a time and initially any signs of improvement will be incredibly small. I was in a coma for 3 weeks and was not expected to survive - but I beat the odds and did! I was still having temperatures after I came out of the coma and unbearably painful headaches etc. The good signs are that she is still conscious and mentally alert. You say that you are not able to be there with her and I guess for you this is a big heart wrench as you want to be at the side of your beloved. Three days is extremely early days and she is in the best place in hospital with the doctors able to treat any symptoms that develop while her body is fighting the meningitis. You have to try and not make yourself ill with all the stressing and worrying you are doing so that you can visit her and encourage her recipovery as much as you can.

    Very best wishes to you and your girlfriend.

  • Thank you so much for your reply. It means a lot to me. Your story is inspiring, you went through so much and you are here helping people like me. I really appreciate it.

    She's in a lot of pain, and I can't stand it. I want to do something but I can't. She keeps telling me that I'm already doing something, making her happy.

    I am really scared, I don't want to lose her. I will be there for her and I will help her recover. I can't be there now because we live in different countries. I will try and visit her as soon as she gets out of the ICU.

    I'm trying to give her courage but I'm running out. I'm devastated.

    Thank you for your wishes and your kind words.

    They have really helped.

  • Hi Antony

    That must be incredibly hard to be in different countries and not able to be by her bedside. As Schmooschmoo said the fact that they haven't sedated her into a coma or has the meningitis caused her to go into one (as I did) is a really positive sign. The headaches are horrendous and unfortunately do continue for sometime, but that is the norm with meningitis and does not mean she is going to lose her life. The headaches will continue for quite a long time after discharge even after the meningitis bugs have been eradicated from her body by the antibiotics. She will also be very fatigued and need to sleep a lot as well as this is all part of the recovery. Meningitis is not like the flu and the recovery usually goes on for months after discharge. She will continue to need lots of rest and will not be able to get back into the full swing of her life for sometime.

    I am wondering what country you are living in and what Country your girlfriend lives in? Here in the UK we are able to ring the Meningitis Now helpline as a source of excellent information and support. If you are not in the UK I would certainly suggest you look at the website where you can download lots of helpful information about meningitis. maybe there is an organisation in your Country but Unfortunately i can't even try to advise you without knowing where you are in the world.

    Please do try to hang in there as there are very positive signs of a good recovery.

    Best wishes

  • Hey StrawberryCream,

    I live in the UK, she's in France, but we're both from Greece. Thank you for letting me know about the helpline.

    Her pain gets worse and worse every day. She wants to give up, I'm always telling her to keep fighting, but it's killing me. She's been vomiting many times a day and her fever isn't going down. Her eyes really annoy her and she thought she was seeing shadows from one of her eyes. I don't see any signs of improvement. It's our 5th day in ICU and the symptoms get more intense. I think her condition is getting worse. She's sleeping a lot, which helps her with the pain, but really scares me. I'm afraid they might have to put her into a coma if the pain gets any worse.

    I spoke with a doctor in Greece and he told me that she's ought to start feeling better in a few days, but I'm not seeing it. I can't take it anymore, but I'm going to, for her.

    Could you please give me an estimated duration of her symptoms? Is she going to be out of there soon?

    Antony

  • Hi Antony,

    I had BM septicaemia 5years ago. I was hospitalised and isolated like your partner. I was on an IV of penicillin for 8 days. I ate and threw up routinely while it killed the bug. She's got every right to feel scared but at least she has her family there as I didn't have mine. She's going to be tired for a long time to come and it will take her a long time to recuperate what's happening to her body. I don't know much about her type of BM but I guess they're all fairly similar. If she has her limbs and her life then she's a survivor. I'm sure the medical team are doing the best they can to monitor her and keep her stabilised. There's a lot more information and research about it now than there was just 5 years ago. You will see her slowly improve and she will tell you herself how she's feeling. I wish you all the best and she's a lucky girl to have you care so much for her to write on here to ease your mind that she'll be ok. Pls do let me know how she's going in due course. We're all here to support you both!

    Much love, Sarah X

  • Hey Sarah,

    Thank you so much for your reply. I'm really sorry about what you went through.

    Her condition is still stable. She's in a lot of pain. She has full consciousness, we speak on the phone and text on a regular basis. She seems to be alright mentally. There might be a complication with the optical nerve, but still has her vision on both eyes.

    She's very weak, very drowsy but I can make her laugh, which helps us both.

    I am really scared that I might lose her. I had some kind of breakdown yesterday. I'm trying to be strong for her but it's difficult.

    Does anyone know the common duration for BM approximately?

    Would you characterize her condition as mild or severe?

    I have read everything there is on the internet.

    I didn't get specific answers.

    I will also ask my GP today.

    I will keep you posted.

    Thanks so much.

    Antony

  • Hi Anthony,

    Sorry that your partner has BM but sounds like it was diagnosed early and treatment not delayed. The most reliable predictor of BM outcome is consciousness and mental state and given your partner is alert and happy a full recovery is likely as the illness sounds like it did not advance to more serious levels. BM is almost always treated in ICU depts and although frightening this is quite normal. Length of treatment is variable also depending on how quickly the bacteria is succumbing to the antiobiotics. The fact that your partner is telling you her symptoms is wonderfully positive. Most BM patients are put into induced comas. I wish your partner a speedy recovery however even in the best cases that can take months. Your partner may not realise this now but is extremely lucky this was caught early. All the best. X

  • Thank you for reply.

    It's the fourth day now in ICU. The main symptom remains the painful headache. She said her eyes felt funny, and as it turns out there might be a complication. Also her arms are feeling weird. She's getting a lot of sleep, which I think is a good thing, because she forgets about the pain for a while. I don't care if the recovery will take time. I will be there for her. I just want her not to be in pain anymore. It's killing me. There is absolutely nothing I can do. At least I will be next to her when she gets out of the hospital. I just want to know how long she's going to be in pain.

    Thanks again.

  • Hi Antony,

    I understand how frightening this is...I do....my mum passed away from BM in may this year. My mum though, was paralysed on presentation to hospital, her illness was a lot more advanced than your partners. So I tell you this not to compare the patients but more so to tell you that I understand AND so that you will see how presentation to ER is very important to outcome. Now that you might feel a little relieved in that sense, perhaps you can ask her family or consult directly with doctors about the pain relief they are providing her. She should be given pain relief, however I'm not sure on what doses are allowed as to not compromise the effectiveness of the antiobiotics. What I found from first hand experience, being the patients loved one, is that you must be assertive with the doctors or they will not disclose any information. Doctors are both busy and in many cases, believe that the average citizen does not have the intelligence to understand their explanation (being cheeky here but very true), so if you or your partner or her family are unsure if something, not happy with the explanation etc, speak up. You have the right to know what is happening and how your partners medical improvement you witness compares to what they would expect medically. As it seems, your partner is improving but if her level if pain bothers you (and of course it does, I was livid when I found out the Drs hadn't given mum any pain relief after 24 hours in the ICU, I only found out because I asked). ASK, ASK, ASK.

    All the very best, life is precious.

  • Hi Schmooschmoo,

    I am so sorry about your mum, honestly.

    Thank you for sharing with me.

    My baby is clearly in a much better condition, she can get up, but she's dizzy. She takes a shower everyday, although I told her to keep her energy and rest. But I hope it helps her. I have no direct communication with the doctors. I'm on a different country and I don't want to annoy her family. They're going through so much right now. That's why I'm so scared, cause if she stops talking to me I won't be able to stand it, I will collapse. Thankfully, BM doesn't seem to be progressing. I don't know what I would do if I lost her.

    Life is in fact precious.

    Thank you so much.

    Antony

  • Hi Antony,

    Two months ago I was hospitalized with meningitis. I am luckily recoving. I have about two hours in the morning before I need to take pain medication for crushing head pain. I am able to go out of the house for a very short while, a few times a week, before exhaustion hits, so I dont go far. I spend most days in a quiet dark room. I dont want people fussing over me or being near me. I appreciate knowing I am loved, but I need solitude. My husband was worried and always thinking I was angry with him. This is far from true, I just need quiet, little conversation and peace. He is beginning to understand.

    Truthfully, I am surprised to read how long the recovery can take. I do know now it is normal to suffer with headaches, pain, light and sound sensitivities for many months.

    Your friend sounds like she is in good care. Healing will take a long time. Take a deep breath.

    Sending prayers for you both.

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