Stenotrophomonas Maltophilia

[JANET-CAMPBELL]

Has anyone else had this in their lungs, I am 66 had asthma all my life now got mixed airways. 8 weeks ago I started with an infection which lab test called haemophilus infulenzae,prescribed amoxcycline, after 5 weeks and being much worse another lab test came up with the steno bacteria prescribed by microbioligist, Co-trimoxazole 1 week then 3 days off and thought I was at deaths door, had to find out information myself as nurse hadn't bothered needed 2nd week, just been today and am still not well same nurse did ring microbioligist and now on Lovofluxacin. She has been seeing me twice a week but I am wrong to think when she said she had never heard of it she should have done some research. I am very breathless even sitting I have never felt so ill. Any information on the bug would be helpfull.

[Hidden]

Hi Janet. Sorry you feel so awful. I know something about it as it was isolated in my lungs some years ago. Luckily I got rid of it (I had an active pseudomonas infection so was admitted for IVs.) S.maltophilia isn't very common, tho more so in cystics. It's one of the gram negative bugs which can form biofilms & are harder to eradicate than everyday ones. The two antibiotics you've had are the usual ones to treat it. Why are you seeing a nurse? I think it at least merits a GP to look after you, who can seek advice from your consultant if necessary. Don't take chances with it, like pseudomonas, s.maltophilia can colonise your lungs if it's not treated radically enough, so if you don't feel any better on the levofloxacin don't ignore it.

[JANET-CAMPBELL in reply to Hidden]

Thank you for your reply, I don't have a consultant and as you say I thought I should have seen the GP but our surgery is very nurse led. I have an appointment tomorrow and am going to insist that I get refered to hospital. I am a little better but my peak flow still goes down as low as 130 highest I have had this week is 180 usually I am 300. Even though I am very overweight I keep fit and go gym and swimming so have good blood oxygen levels. I just hope this 10 day course does it but if I get worse after this am going to insist I see a GP.

[Hidden in reply to JANET-CAMPBELL]

Janet, I don't want to worry you but I've been told to dial 999 if my peak flow drops to 50% or less of "best". I think that advice is fairly standard. So do make sure your GP is aware of your low peak flow readings. I think this nurse-led care is totally inadequate for someone like you.

[JANET-CAMPBELL in reply to Hidden]

Thanks for replying I have a fear of going into hospital with my asthma, so even at my worst these last few weeks have got myself through. I am probably my own worst enemy I think because I have had it all my life and my parents brought me up to just get on with it. I have told the nurse each time I have gone my peak flow and she puts it on the screen she just says well you know what to do if it gets worse! I am seeing her twice a week but she seemed to think that just 1 course would do and was surprised that I was still so ill. I worry incase it has done irreparable damage to my lungs. Sorry to burden you asking questions but I don't feel quite so alone with this now,

[Jandm]

Hi Janet. I have had steno and get recurrent infections with it, my consultant recognised this quite a few years ago when I had been unwell for sometime. It's not particularly common and I'm not surprised your nurse hadn't heard of it as most doctors don't know about it. My consultant prescribes a 6 week co-trimoxazole course which works for me (I am on prophylactic antibiotics which may be why I have a prolonged course). It is a rather resistant bacteria and I've found that it takes a long time before I get back to my usual baseline.

[Matman in reply to Jandm]

This Issue and Comment Thread is very interesting and important as so many Respiratory Suffers are jinxed by frequent exacerbating microbe infections.

If you've posted or commented above, do you have a view as to the reliability of the microbiology labs identification of the microbobes you've been mentioning or is the issue only with the treatment, not the diagnosis?

What I'm getting at is, could there be a case for getting a second independent (private) Lab - via a Private GP - to also run Tests to try and identify what bugs are causing issues if the NHS Lab (or the Treatment following the lab results) don't lead to rapid resolution?

[Hidden in reply to Matman]

Hi Matman

So costly..just have to keep on putting pressure..for emergencies I found the NHS pretty good.

[JANET-CAMPBELL in reply to Jandm]

Thank you for this especially about it taking a while to get back to baseline

[Keep-positive]

Hi Guys, I noticed this is an old post from 4 years ago ! Was wondering how you all are, my recent sputum result has shown stenotrophomonas maltophilia bacteria.

I have had a two week course of co-trimoxazol which has not worked and have been given another two week course ( co-trimoxazol antibiotics ) which I'm half way through.

I was wondering if you all managed to get rid of it as I was told it's difficult due to being resistant to many antibiotics.

I can't stop sleeping, I suffer from fatigue but now I am sleeping 85% of the day.

I normally have a constant productive wet cough which is now a really dry cough

[JANET-CAMPBELL in reply to Keep-positive]

Hi I've been on permanent antibiotics for 3years now ,no sadly it's still there just be proactive with Doc's and ask for hosp referral I have bronchiectasis finally had diagnosis after husband demanded a consultant good luck x

[Keep-positive in reply to JANET-CAMPBELL]

Oh so sorry to hear that Janet 😢 I also have bronchiectasis , since childhood, so have a consultant.

I've been on prophylactic antibiotics for a few years now, have had the usual haemophilus influenzae, Streptococcus pneumoniae etc but I'd never heard of stenotrophomonas maltophilia, I was wondering if it was the reason I'm "exceptionally" tired.

You take care, I wish you all the best x