Please help chronic lung infection with antibiotic resistant strep pneumoniae

[Katielunghelpneeded]

I have a chronic lung infection with multi drug resistance strep pneumonie, started in March and still have it now in December. I'm 34 with 2 young children this is so scary and ruining my life. I also have ehlers-danlos which is a connective tissue disorder, and heart conditions which rule out a lot of the stronger antibiotics. My gp sent me to hospital were they sent me home with augmentin even though I had taken that at least 10 times, I now use inhalers daily eve though I never had asthma. Has anyone had one of these bugs and successfully gotten rid of it? What did you do? Please answer is you can and thank you

[islande]

I'm sorry you're suffering like this and have 2 kids to look after too no wonder your depressed. I've never had anything like this so can't help with symptoms. somebody will come along and help you.can you give the helpline a ring after the holidays.wishing you well.

[Katielunghelpneeded in reply to islande]

Thank you for your reply 😊

[Alberta56]

So sorry you're so ill. The inhalers should help to keep your airways as open as possible. Try to take a little gentle exercise when you can, though I imagine with children you get plenty of that anyway. I agree that phoning the helpline is a good idea. They are more likely to now about your condition than most of us. Very best wishes. xx

[Katielunghelpneeded in reply to Alberta56]

Thank you so much, I will give them a call for sure 😊

[Jake25]

Please ring the help line Katie wishing you well. Take care xx

[Katielunghelpneeded in reply to Jake25]

I will definitely Thank you 😊

[janedivney]

There are quite a few nebulised antibiotics available now which you might be ok with, because obviously they’re topical. Nebulising a drug daily or twice daily keeps the numbers under control & you out of hospital. I can think of gentamicin, ceftazidime, meropenem, tobramycin, colomycin… in fact I think co-amoxiclav can be nebulised too. Your hospital consultant needs to be a bit more creative, or seek advice from someone more experienced. A microbiologist would be a start

[Katielunghelpneeded in reply to janedivney]

Thank you I never realized this so very helpful, I have not seen a hospital consultant yet, I'm in Ireland and they have said June is when they can see me! My gp is pushing for them to see me sooner as I have run out of antibiotics I can take so on probiotics, real honey, garlic and supplements to try and help my body fight

[PaperQueen]

You poor luv and trying to manage to be a Mum too. I can't advise you but sending love and hope someone here or the ALUK helpline can. Be strong xx

[Katielunghelpneeded in reply to PaperQueen]

Thank you, I'm in Ireland but I will ring the helpline for sure I'm overwhelmed with all the replys 🙂 I have been keeping this to myself for so long and it's been hard

[Yvonneh1234]

I second that 💕xx

[Yvonneh1234 in reply to Yvonneh1234]

you can call 111 for advice with it been New Year’s Day I’m sure they will help wishing you a speedy recovery 😊xx

[Katielunghelpneeded in reply to Yvonneh1234]

I'm in Ireland but I will ring the helpline for sure thank you 😊

[Germantara]

I've haven't had that I hope you get sorted

[Katielunghelpneeded in reply to Germantara]

Thank you 😊

[Dottie11]

Great comments here. re infection. Think about bringing in advice from your Ehlers consultant also. Muscles are important in lung function and there might be a connection in regards how well you can cough muck up and off lungs. I have Hypermobility common type and understand how difficult Ehlers in. Good luck and take care.

[Katielunghelpneeded in reply to Dottie11]

My ehlers danlos consultant has not been great and basically discharged me to self management at this point 🙄 I have a great gp but she's trying to get consultants to see me the waiting lists are so long I'm in Ireland and it takes so long to see anyone and they refer you off to someone else, thank you for your comment as I never thought of the muscle side of things but makes sense has I get so much pain doing my huffing techniques etc 😊

[Dottie11 in reply to Katielunghelpneeded]

I totally understand where you are coming from re referrals. Re Ehlers, some thoughts. Contact their charity- Ehlers D Soc and join any forums . Others may have more info. Also google Alan Hakim. He might have written articles that can help. He is amazing and I was lucky enough to see him a long time ago. He no longers takes on new patients and is in London. I saw him private but as I say I am not Ehlers just Hypermobile which is easier. Take care. xx

[Bronchi1]

Sorry to read that and I can't offer much but in the past was told I was colomised with haemophilus and on a separate occasion had pseudomonas . Both nasty bugs that were not supposed to go away. Without tempting fate they have not been back for years and I think it's my lifestyle and diet that helped. Less stress and lots of supplememenrs pluss eating well. Harder with young kids. Dont give up hope, new drugs are always appearing .

[Katielunghelpneeded in reply to Bronchi1]

I have started probiotics, real honey, garlic, vitamin c and zinc to try and get my body to fight 😅 did you clear them with antibiotics or did they just go away eventually? Thanks for the reply and I am glad to hear that 😊

[Bronchi1 in reply to Katielunghelpneeded]

I had IV antibiotics and also left working in a busy office . Who knows if they are both gone or lurking but my focus is on staying well . Vit D is good, has anti inflammatory properties. Im on Fostair and Incruse now. Good luck.