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Pseudonomas

SeasideSusie profile image
20 Replies

Anyone been diagnosed with this bug?

I had a sputum test months ago which resulted in me being given a course of Amoxicillin. After a follow up test the surgery never got back in touch with me so I assumed all was well until at my COPD check the nurse mentioned I'd had two lots of ABs. I corrected her, told her I'd only had the one course then she told me my second sputum test still showed signs of infection and I should have had a second course of ABs. They couldn't be prescribed as it was a few weeks since the second sputum test was done and I was asked to send in another sample.

I find it very difficult to do and it took me 5 months to get another sample to them and there were still signs of an infection and I was given a 10 day course of Ciprofloxacin. As I've still got some slight symptoms I rung the surgery to ask if they wanted a repeat of the sputum test or would they just repeat the prescription. I spoke to one of the Drs who said the test showed Pseudonomas and suggested repeating the sputum test.

I got the impression from what the Dr said that it is something that can be difficult to get rid of. I've done a bit of googling but don't really like doing too much of that.

Anyone heard of it, experienced it, managed to get rid of it, is living with it?

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SeasideSusie profile image
SeasideSusie
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20 Replies
caz59 profile image
caz59

Hi SeasideSusie.

I actually have this rotten bug at the moment. I have had several bouts of pseudomonas over the years, and yes it is difficult to get rid of. I am very difficult to treat as I am allergic to a lot of antibiotics. I started to feel unwell a couple of weeks back and was put on Cefalexin 250mg, without a sample being taken. My Pseudomonas is usually in the urine, so I have quite a lot of water infections. I have the same argument with the doc every time, that this AB will not work for Pseudomonas, and anyway a sample hasn't been taken, so how do we know it is Pseudomonas, (sorry for waffling). He then upped the dose to 500mg and took a water sample yay!

Sample came back as Pseudomonas, and so put me on the right AB.

The point is, ive been walking about for over 2 weeks feeling crap and knowing I have this damn bug, and only just starting the right treatment.

I just hope the Ciprofloxicin will get on top of it quickly.

I had a bad bout of it last November, could not get rid of it and as I am very limited as to what I could take orally I had to go on a drip for 3 days. This doesn't happen usually, only if the AB are not working for you.

I have a lot of health issues and so I am susceptible to a lot of bugs with my immune system being very low.

Please don't worry to much about this bug, If you are strong in yourself and your immune system is strong, I am sure you will get over this easily. Hope this has helped.

All the best and hoping you will be ok for Christmas.

caz59 x

SeasideSusie profile image
SeasideSusie

Thanks very much Caz. I didn't do a lot of reading but I did read that you can get a Pseudomonas bug (I got the spelling wrong originally) virtually anywhere. Mine is in my lungs, so I take it yours is in the urine again?

I had Ciprofloxacin 500g x 2 daily. Have you had it before? There was a warning about dairy and not taking it within X hours before or after something to eat, also calcium supplements (I had to stop my Osteocare whilst taking it). I think it made some difference but there are certainly some symptoms still there.

I didn't realise I had this bug, being in my lungs it was not obvious that there was anything other than the COPD so originally, after the first course of Amoxicillin of course I couldn't tell them if my symptoms had cleared up hence the second sputum test and although a Dr looked at it and it was still showing infection somehow I got missed for being informed and a repeat of the prescription. I am assuming it was this Pseudomonas originally. At my next COPD check I will have a discussion with the nurse, she tells me far more than the Dr but that wont be for a few months yet.

Hopefully I can get a sputum sample soon, hard when you've not really got anything to get up, perhaps I should hang upside down for half an hour, that might do the trick LOL!

I hope your ABs kick in and get on top of it quickly for you.

cofdrop-UK profile image
cofdrop-UK

Hi Seaside Susie

The impression you got from your doc is correct - pseudomonas can be a sod of a pest to get rid of being a gram neg bacterium, and many cf and non cf bronchiectasis patients become colonised with it. However this is not the end of the world.

As pseudomonas pests are surrounded by protective biofilms many colonised peeps take Azithromycin 1 3 times a week or 1 a day or another prophylactic. These work in 2 ways - 1 they reduce inflammation and 2 they break down the biofilms - so when they 'kick off' the chosen antibiotic will be able to attack the little bs. Some folks also nebulise abs. If colonised it will raise it's ugly head sometimes and many folks need IVs.

It may be that if they give the correct treatment quickly enough you may erradicate it, but if it were me hun I would not allow them to drag their feet. Go upside down - do whatever - as long as you get your sample up. If the next course of abs doesn't do the trick I would be inclinded to ask for a referral to a respiratory consultant.

good luck hun.

love cx

SeasideSusie profile image
SeasideSusie

Thanks very much Cofdrop. The Dr I spoke to wasn't my own Dr who I prefer to see, my own Dr knows me well enough to know that I like everything explained. I'll do my best to get a sample for Monday and I'll print off your reply to remind me to try and take it further if it doesn't get cleared up.

happyfeet59 profile image
happyfeet59

I am colonised with pseudamonas and it is now resistant to Ciprofloxacin which I was taking at 750mg x 2wice a day. Some years ago I had 3 infections over 4 months and my GP's just kept changing the antibiotic (I was sending in samples as directed) the 4th GP finally gave me the Pseudamonas name and it has been trouble ever since.

I have bronchiectasis and now have a 'plan' and emergency antibiotics at home. But for many years i had to battle with GP's who would berate me for 'asking' for antibiotics. Finally I have a GP who knows me and trusts that I know my body and won't take abs unless I'm bad. If you have a GP like this go back and see him/her. Sometimes you get the trainee Drs who are always reluctant to prescribe abs.

cofdrop-UK profile image
cofdrop-UK

Hi happyfeet

Don't you have a respiratory consultant specialising in cf/bronchiectasis? If not I would defo ask to be referred as you should be monitored and you can be more assured your pseudo will be better controlled.

OMG so agree re baby doctors - my heart sinks when I see them! I have high temp - spiking in the main and getting up tons of nasty gunk at physio yet again. Don't bother GPs with it usually just get a sample down and start an ab - after all without a result my guess is as good as theirs and sometimes I can tell by the taste. Only saw doc because since IVs in July had so many GI problems I thought it best to check which they thought most suitable under the circumstances. She gave me doxy and explained I should take 2 now and 1 a day. I explained no I always have to take 2 a day. She finally agreed and like a fool I didn't look at the prescription. When I got it home she had given me 14 days - a 7 day course - as you will know not enough for bronchiectasis. If she had looked at my repeats she would have seen I am always prescribed 20.

By the way have you tried prophylactic abs?

Good luck

cx

happyfeet59 profile image
happyfeet59 in reply tocofdrop-UK

Hi Cofdrop - I should have read to the end of the thread before responding. See above!

Doseages are another thing - we bronc patients often need a higher dose than the average patient. I once got my 'resp specialist' GP to put the advised doseage of Cipro (750mg x 2wice per day) prominently on my records as I was fed up having to battle with other GP's in the practice. I also had a problem in hospital once when the consultant put me on 750mg and the pharmacist came round and cut it to 500mg (standard high dose) the nurses couldn't change it so I had to wait until the consultants rounds next day.

cofdrop-UK profile image
cofdrop-UK in reply tohappyfeet59

Oh hun I know just what you mean. In the past I have been given a prescription for amoxil 250 for five days, would you believe. I took one look at it and told him trying to sound jovial 'these just won't do - I may as well use them as a suppository' Luckily he did laugh and trying to be diplomatic so he didn't lose face but understood our needs at the same time, I just said 'as you know we bronch need higher longer doses as you will see from my repeats'. He couldn't say he didn't know even though he had just proved he didn't.

I think we are going to find it even more difficult in future to get some docs to prescribe correctly for us, as quite rightly they are cutting down on abs for the normally fit and well. Still the guidelines do state bronch should be treated the same as cf with regard to abs.

OMG how annoying for you the pharmacist changing his prescription - I bet your consultant was livid!

Samples are another thing - I always do my own MC&S paperwork and ask for cf protocol.

This is starting to look like a rant................

love cx

happyfeet59 profile image
happyfeet59 in reply tocofdrop-UK

MC&S? cf protocol? I've not heard of these! Are you in the UK? NHS protocol?

cofdrop-UK profile image
cofdrop-UK in reply tohappyfeet59

Yes hun I am in the UK. You know the Microbiology Form that the sample pot is placed in, you or the doc puts on details bronch etc. and will ask for Microbiology Culture and Sensitivity. Lots of bronchs, especially those who culture pseudo often write on CF protocol, meaning treat the same as CF, which means they keep it growing in the lab a few days longer to ensure all the nasties like psuedo have chance to grow.

I think the staff at the labs are really good and sometimes consultants liaise with cons in microbiology for advice in diff situations.

love cx

SeasideSusie profile image
SeasideSusie in reply tocofdrop-UK

At our surgery, when you are asked to take a sample in you just fill in the label on the pot yourself and put it into a lidded bin along with everyone else's pots to be collected that day.

I know blood forms are filled in by the nurse who takes the blood at the surgery. I've never produced a sample at the surgery whilst with the nurse, perhaps a form would be filled in then. But if you're just given a pot to take home then it just gets put in the collection bin.

I think I'll have to print off a fair bit of info from this thread as it may come in useful in the future.

cofdrop-UK profile image
cofdrop-UK in reply toSeasideSusie

That's what they do at my surgery too Suzie and before they are collected one of the nurses will then fill in and put on appropriate labels on the microbiology forms. I spoke to my GP and e xplained I seemed to have difficulty getting sample pot from reception and that if I had some and the forms it would save everyone time and I could get samples in much earlier. He agreed but had to ask practice manager if they could put on my notes I could have pots and forms on request, which they did.

Am now also on good terms with a nurse with masses of common sense. She tells me the reception are tight and any time I need pots, micro forms and labels I must see her. She has been just great. The only thing I have to change is the date and time sample taken.

We don't have the luxery of time, so it's very helpful to have this arrangement and get the sample in just before the van leaves for the lab and then get cracking with an ab. Saves everyone time and this lovely nurse 'gets that'.

love cx

SeasideSusie profile image
SeasideSusie in reply tocofdrop-UK

Hi Cofdrop. To be honest, I'm not sure what happens to the pots in the bin when they're collected. This bin is only for people who pop into the surgery with a sample. I can call in and get a pot at any time without even telling them why, so not even the Dr or the nurse would know I'm taking a sample in to be tested - last time I was asked to give one it took me five months - so not sure if a form would be filled in.

I'll make a note to discuss with my own Dr when I have my telephone appt in a couple of weeks about the microbiology forms when I just drop a sample in like that.

cofdrop-UK profile image
cofdrop-UK in reply toSeasideSusie

That's what most folk do at my surgery - just fill in details on pot and put it in with the rest of the samples, but before they are sent nurses fill in microbiology form. Microbiology wouldn't accept them without, but don't worry hun the nurses will do it. I just prefer to do it myself.

cofdrop-UK profile image
cofdrop-UK

Sorry flib our paths crossed again with similar info - better that than none at all :-)

cxxxx

happyfeet59 profile image
happyfeet59

Flibberti - My consultant is a Bronc consultant and I am nebulising gentamycin. I didn't mention it before as I didn't want to add more complexities to the op. I was talking about earlier experiences with Cipro and pseudamonas.

I am not taking azithromycin. It was being considered by the consultant but then I went into AF and had some heart issues. I think there may be some problems with Azithromycin and heart conditions.

SeasideSusie profile image
SeasideSusie

Hi Flibberti

You have it spot on :).

I was diagnosed early this year with moderate COPD but to be honest I think it really is only mild. I had a pneumonia jab a few months ago and that was when I took my very first sputum sample in - nurse wanted one before giving me the jab but I told her I find it very difficult to do but I was fine and she took my word for it. I did manage to do a sample a couple of weeks later and that resulted in a phone call telling me I had an infection and to pick up a script for Amoxicillin. I was asked to get back in touch with them if symptoms remained. I told them I had no symptoms so I wouldn't be able to tell them if they'd not cleared up! Anyway, a few weeks later I managed a second sample and that's the one that got looked at by the Dr but even though it still showed signs of infection it was ignored and I had no further treatment. The name of the infection was mentioned but I can't remember it, but thinking about it I now don't think it was Pseudomonas though. I'll ask my Dr as I have a telephone appointment in a couple of weeks to discuss my thyroid blood test results so I'll steer the conversation to these infections and try to find out.

I think whatever that infection was gave symptoms which made the COPD appear worse than it actually was because I felt somewhat better after the Amoxicillin, a mucousy cough I'd had for years went away, although the inhalers were helping with the breathlessness.

I can't say that I have any symptoms of this Pseudomonas, or if I do I don't know what they are. For my COPD I am managing on Spiriva in the morning and occasionally I feel I ought to take a puff of Bricanyl before taking the dog out if it's really cold or windy.

I don't have any rattling or wheezing and virtually nothing in the way of mucous, my main symptom is breathlessness and as long as I don't try to talk and walk or try to climb hills then I manage OK.

When I was told I had this Pseudomonas I knew I'd got a slight difference in how I was feeling but that was really just that I had a small plug of thick mucous that came as far as my throat and all I could do was swallow it back down and that's basically how it still is after 10 days of Ciprofloxacin.

Anyway, I shall do my best to get a sample ASAP and when I get to talk to my own Dr maybe I'll get a bit more info.

Just for info, what would be symptoms you'd expect to get with Pseudomonas in the lungs? I'm wondering if I'm not recognising something.

Sorry for the essay, I seem to have a touch of verbal diarrhoea LOL!

SeasideSusie profile image
SeasideSusie

Thanks Flibberti.Thankfully I have none of those symptoms, the only thing dfferent from normal at the moment is this thick small plug of mucous, not even got a cough of any description. No luck bringing it up so far today, I don't think there's the remotest possibility actually. Dr told me to have a curry, that sometimes works so I'll do that tonight, you never know LOL!

danwhite profile image
danwhite

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dafadil profile image
dafadil

Hi Seasidesusie I have had Pseudonomas for about 3 years it is very hard to get rid of.i suffer terrible with my lungs. I have just gone through scans and biopsy and I was on Ciprox for years and they don't work for me now. At moment am having IV fMor two weeks. this dosnt always work I just have to hope .I hope you go on well ,best wishes Monica.

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