Has anyone got rid of their Pseudomonas - British Lung Foun...

British Lung Foundation
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Has anyone got rid of their Pseudomonas

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i have been on antibiotics since january for this and its still there has anyone actually got rid of it or is it with me forever

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32 Replies
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From what I understand this infection will lay dorment once you get control of it but can pop up again when you start even a slight infection. This has been my experience of it. I've had it 3 times so far thankfully only once needing IVs.

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in reply to nanniesue

im assuming you have had samples that have said you dont have it which i havnt ....i havnt been on ivs ive had 2 types of oral antibiotics and the one im on now is through a nebuliser but it still comes back showing its there....

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I agree with anniesue, I've had it twice, although at the moment my lungs are stable (according to my consultant) but I know it will jump up and bite me again one day in the future. The problem is, WHEN? We never know and that's scary!! Hope you get the all clear soon. x

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in reply to Hidden

i havnt managed to get rid of this yet im starting to think mine isnt going to go

Hi mandy, sorry you have this troublesome bug, do not despair as many people have been able to manage it.

I was extremely unwell with it 6 years ago, also had strep pneumonia and haemophilis all at the same time. It frightened me so much that I started reading up on every possible way to help myself get better and eventually did get very well, mainly a complete change of diet including some raw salad with every meal.

I am not too good at the mo with haemophilis, only because a relative was coughing and I caught whatever it was but my sputum sample only picked up Haem, not any pseudomonas.

nannie and poems are probably right that it lies dormant but I'm not so sure as I had a few years feeling really well after it.

Get plenty of rest and I hope you get over it soon. x

Su

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in reply to zube-UK

someone else mentioned my diet and said i should be on a high alkaline diet but as i have problems losing lots of weight it would be impossible for me to be on that but i would be very interested to know what your eating and how its helped because mine isnt laying dormant every sample i send it shows its still there and im on a 3rd antibiotic which i now use with a nebuliser

zube-UK
zube-UK
in reply to Hidden

Hi again mandy, sirjames has given some good advice there.

My alkaline diet is based on "food combining" which means that you do not combine too many different types of food at each meal, this stops them creating acid.

The idea is to build up your body's natural alkaline reserve which keeps us feeling well, harmful bacteria and infection of all types can not thrive in a body that is a healthy alkaline level.

The easiest way I do it is to have a raw green smoothie every day and do not eat processed sugar or foods, I eat a great variety of fresh foods but combined right, veg, meat, fish raw cheeses, sprouted seeds, the lot ! I am 5ft 6" 9st.

Su

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in reply to zube-UK

yeah i did look up the alkaline foods but was just confused as my dietitian said i had to eat everything we shouldnt eat, fresh cream cakes chocolate high fat etc to put weight on and to be honest i have been doing that and was still losing it so they have got me on complan now and i prob dont need to tell you that i just feel sluggish and tired from it all so will definitely look at adding some good foods....thanks x

Hi Mandy, I just got rid of it (touch wood) 2 weeks ago after 6 months of antibiotics of which 2 months were on nebulised gentamicin twice a day. It really disabled me. It went once and came back. I had it in 2011 but not as bad as this time. I understand if it colonises the lungs, it can lay dormant for a couple of years before it strikes again and It's very difficult to treat.

Try searching for 'pseudonomas' in the search box - plenty folk have written about it. Do you have a COPD team where you live? See your gp and ask about a nebuliser. It worked for me where oral antibiotics by themselves failed. :)

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in reply to James48

I do have a COPD team i have had one of their nurses visit me every week since january which i know has gone way beyond what they are suppose to do she has been a rock to me...i was given 2 different types of antibiotic then as you say i was given the one im on now called colomycin which i have through a nebuliser and i send a lot of samples in but they come back every single time showing there is Pseudomonas so i have to ask myself the question why am i having antibiotics twice a day every day when they are clearly not working

Hi Mandy, pseudomonas forms a bio film round itself and is notoriously dificult to treat. Some people are on neubilsed antibiotics for 6 months and will go eventually. I had it from Feb till about 2 weeks ago. Keep on taking the antibiotics. Colymicin is one the best antibiotics.

blf.org.uk/Conditions/Detai...

patient.co.uk/doctor/pseudo...

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Thank you Sir James i get the impression you know what your talking about

When I was receiving chemotherapy several years ago I was on massive doses of antibiotics because of repeated lung infections. My immune system was so compromised that they had to stop the chemo. I was told that I had pseudomonas but that it 'hides' behind other bacteria and so it is difficult to diagnose. I was told that only that IV antibiotics would clear it.

It took a whole year and two lots of IV antibiotics before I was eventually clear- then I was given azithromycin for six months to keep my chest clear.

Your question was would it be with you forever and my answer is I have been clear of pseudomonas for three years. I have had lots of other bugs in my lungs since then but as far as I am aware there has been no more pseudomonas. Of course I don't know if it will be back, but if it does, I know that it can be treated- however long it may take.

I have worked hard to keep myself well with physio, a flutter device which keeps my lungs clear, moderate exercise and a sensible diet, but what has helped me most is a positive attitude. Don't let this get you down, take care and hope you feel better soon.

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in reply to loobyloo222

im on azithromycin and take colomycin through a nebuliser now and in october i see my consultant so going to have a chat with her because every sample i send off shows its still there and ive heard a lot of people do clear it up even if it returns

i totaly agree with you that a positive attidude is important and if im honest thats the bit i struggle with most because nothing seems to be getting rid of this so hopefully its time to change it....thank you x

Oh dear Mandy, this is such a tenacious bug. The usual antibiotics for it is Cyprofloxacin. I had 500 mg twice a day and 750 mg twice a day. But when I have it in hospital, they put me on intravenous, Gentomycin or Ceftazadine. The last bout in hospital, the first week I had pneumonia, I was getting on well and went back home; but the next day, I got very ill with pseudomonas. I was given Ceftazadine. Then I was told that I would have a pump attached to my arm that would deliver 24 hours/day some Ceftazadine. It took another fortnight. The hospital to home team came every day to replace the pump. This did the trick. But, as people affected with bronchiectasis or COPD, our lungs are vulnerable to infection, especially of pseudomonas.

Perhaps you ought to contact your consultant to say that after all this time it doesn't work. Don't suffer more with this, ask your consultant or go to hospital (Sometimes, being seen by somebody else who will seek through sputum and blood samples what the best course of action helps).

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in reply to helingmic

yeah i have had 2 different types of antibiotics and have now been on my 3rd colomycin for about 5 months through a nebuliser and its still there...i see my consultant in october and will have a chat with her about it because it seems to me the majority of people do get rid of this bug even for a short period of time which i havnt yet......thank you x

helingmic
helingmic
in reply to Hidden

Perhaps, Mandy, you ought to try to see your consultant nearer this time. Talk to your GP to try to get a nearer appointment. Pseudomonas needs to be treated without delay.

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in reply to helingmic

yeah ive had this since january and im on my 3rd different antibiotic and all my samples come back showing its still there....i definitely think its time to try something new x

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Mandy, I am in the rather unusual position of being on colomycin ( for 7 months now) because I was once colonised with pseudomonas about 12 years ago. Even though it hadn't shown in sputum tests for all that time, my consultant insists that it could still be there and they're just not picking it up on their tests. He feels this is possibly the reason why my bronchiectasis had gotten so troublesome. I find it hard to accept this line of reasoning and feel I should not be taking colomycin. I haven't had any major infections in the months I've been taking it but feel as if there's a constant low-grade infection there. I rarely feel well for more then a few days and my breathing is much worse then it used to be. Pseudomonas ?? I don't know but it does seem to be a persistent bug/bugger.

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in reply to Hidden

That logic seems bizarre to me surely if your samples come back clear then its not there...i do know it can hide behind other infections but i have never had a clear sample mine always shows Pseudomonas and at the end of the day these antibiotics we use are bad for us

...im on colomycin now its my 3rd antibiotic i take it through a nebuliser and i had to have my first lot of this in hospital because it can make your breathing worse !!!!! i dont know if you were checked out in the same way to begin with before you started yours but it can most definitely make some people have more problems breathing so not suitable for everyone

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in reply to Hidden

Bizzare to me too Mandy but for now I'm going along with it.

helingmic
helingmic
in reply to Hidden

I had Colomycin too. It didn't help me to get rid of the bug. I actually had to go to hospital to have an intravenous. I had Gentamycin, but it made me deaf - although the audiologist consultant said it was old age. Only a fortnight after stopping the drug, my old age evaporated and I can hear normally now!!!

Sometimes a consultant will give a mix a =of antibiotics intravenouslyto get rid of the thing. Pseudomonas is tenacious and it does remain in the background. I hope you get rid of it Mandy and Argana

Argana don't stay with that bug on the back burner. perhaps yo ought to go back to your consultant and ask for more detail of what's happening.

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in reply to helingmic

oh dear i was on an antibiotic that my consultant said could cause deafness so be aware of it so i have either already been on that or its the side effect of another..

why the consultant blamed your age is beyond me.....its one of the things i struggle with a lot to be honest because i just see gps etc messing up and making mistakes all the time and its at our expense

helingmic
helingmic
in reply to Hidden

It's easier to blame my age rather than his friend consultant!!! fortunately, I vociferated loud enough for the drug to be stopped in time, and I recovered my hearing! True, they would have continued on ly age rather than accept their mistake. I happened to ask for the British Formulary in hospital about this drug (Gentomycin). This was the second point that was made in the book in italics, so doctors would be aware. I mentioned it at the time to the consultant. He sent me to the audiology department where my age was mentioned!!!

webmd.com/a-to-z-guides/pse...

Might be worth a read?

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The thing that stuck out to me mostly reading the link you sent me was hand washing......i was in hospital for 7 days and only one person from the pharmacy washed her hands when she came into my room which i did find shocking at the time

happyfeet59
happyfeet59
in reply to Hidden

I ask everyone who approaches me with a view to hands on treatment if they have washed their hands. Unless they have pulled on gloves in front of me. Even the consultants (medical students love this!)

The only person who was 'put out' by my request was a care assistant (not nurse! although people think they are) who had just been helping a patient with a bedpan. He told me that the hand gel was no good against bugs so I said I wanted her to wash her hands at the sink.

Mind you, whats the point of washing hands if you are going to cough all over the patient! Lets ask for masks as well. Used to happen!

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Its astonishing how they dont do it......my mum was in hospital years ago and i washed my hands with the gel that was outside her room every time i went in and left.

No wonder we come out of there in a worse condition when the so called professionals dont do what they are telling us all to do and lets not even start on the cleaning regime.

Im bound to end up in hospital at some point and i will be taking plenty of gel and wipes etc next time and will take a leaf out of your book by reminding them !

Mind you clean hands was the least of my worries as one nurse tried to give me and the 88 year old woman in the next bed medication we shouldnt have had and that lovely 88 year old told the nurse straight that she would prefer to die of natural causes not an aided suicide which made me howl with laughter ! very scarey

i have pseudomonas in both my ears i have had it for three years. i saw my doctor and he gave me sofradex. i use baby wipes to wipe the outer of my ear and have used cotton tips just on the outside of my ear the discharge of pseudomonas in the ears is like a bright yellow sometimes green if its really bad. im taking a probiotic to see if that helps. it is resistant to most antibiotics my dr told me it is quite hard keeping it under control.

Hello, one question please!

How easy is for a person being treated for pseudomonas to transmit it to someone recently diagnosed with hiv?

Is this possible?

The two persons never came in direct contact they only touched and hugged the same pet. Thank you.

Nofrills
Nofrills
in reply to yperoxos

My doctor said I can't give it to anyone else because they don't have bronchiectasis.

I got rid of it. I was diagnosed with bronchiectasis at 15 years old. In 1974 I started producing thick green phlegm. My doctor put me on three consecutive courses of cipro without effect. Sent me to my lung doctor, who said it was very hard to get rid of. Sent me to an infectious disease specialist. In the month prior to my appointment, I swam pool lengths for 30 mins. every day. By the time of the appointment the sputum had improved. The specialist said the swimming had helped and it was now colonized and I was back to my normal self. My lab tests continued to show pseudomonas until about 2007, and has not returned. To this day, I still swim 30 minutes 3 times a week.

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