I have Bronchiectasis (diagnosed 18 months ago) and life long asthmatic. Suffering repeated lung infections treated by antibiotics usually amoxicillin. Sputum cultures usually come back negative! Have had a bad infection for 2 weeks now and sputum test confirms colonisation with pseudomonas. Dr. Rang me last evening to give me the news and I pick up a new antibiotic today. I knew that there was something lurking because I felt quite ill and breathless and also had a wheats/yeasty taste when I coughed!
I have read quite a bit about this infection and I am scared! Reading some of your posts/experiences is encouraging though. Any further infor/advice is invited.
I am 57 and work as a social work manager in child care. I am worried about continuing working in public services as this exposes me to ongoing risk of further infection. I am self employed and need to take sometime out of work whilst I recover but not entitled to any benefits because of my savings. Any advice here would be helpful.
Thanks in advance.
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DunCaan
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Firstly don't panic, this bug is well known to me and there are various ways of dealing with it. I would think the oral antibiotic you have been prescribed is probably Ciprofloxacin, which I think is the usual first treatment. I nebulise Colomycin which is another tried and tested way of trying to evict this bug.
One consultant told me this bug never leaves once it has become a squatter, however I recently tested negative for it.
As regards to trying to avoid infections, buy the 'flu and cold blocker from Boots and the First Defence and use them routinely. They do help.
I'm sure you will soon be feeling much better and send you warm wishes.
Hi Kerrieblue, I am most interested in your Reply here. I've just been told that I will be starting a course of Colistin, via a home nebuliser very soon.
My last three sputum tests have come back showing a positive pseudomonas infection, even though I have been taking Ciprofloxacin.
I was diagnosed with Bronchiectasis in 2012 and have only seemingly been colonised with this wretched pseudomonas since February this year. I say 'seemingly' as I think it may have started well before then.
However, I was delighted to hear you say that you have managed to evict your colonisation by using the nebulising method, as I'd also heard that pseudomonas were almost impossible to clear - so, well done.
How long does each Colomycin course last? How many times a day do you nebulise for?
I took your suggestions of buying: Cold & Flu' Blocker and First Defence from Boots - many thanks.
I have also started taking Allicin Pure Garlic tablets (they don't smell awful!) and Bio Acidophilus Forte (this is rather expensive and it needs to be kept in the fridge) to keep my digestive tract healthy, especially when I take any antibiotics.
Keep well and best wishes to you and DunCaan for the original Post.
I have been on nebulised colostin for a good while now, and I am keeping reasonably well. I am trying to change to Promoxin which is much quicker to nebulise but is more expensive, sadly my consultant seems to be dragging his heels over this.
I also take multi vitamins, probiotics, and Manuka honey every day. I buy a jar every month and hubby will have to get a part time job as it has just gone up to £45 a jar, but I do think it helps to keep the bugs at bay.
Try to use the Cold and flu blocker every time you go out.
You are welcome to PM me if you would like to chat.
Thanks Kerrieblue for your response. ciprofloxin seemed to work wonders for first 36 hours - got rid of the nasty green stuff but since then I have been up and down with my lungs filling up throughout the day - clearer and less thick but lots of it. Tired and fed up at the mo. See consultant on Wednesday. Will let you know how I get on.
Hi Duncaan please don't be scared! There is a lot that can be done, colonisations are a pain to get rid of, keep having repeat sputum tests and take your ABs, I don't know if you have been offered steroids but they do a marvellous job. Can't help re benefits but sure someone will be along that can. You take care xx
hello, there are quite a few of us on here who have bronchiectasis ( we tend to call it bronch and ourselves bronchs ) . Some of us are colonised with pseudomonas. I have had it since 1986. It is not anything to panic about and it is better not to google it because the information does not relate to pseudomonas in bronchiectasis but community aquired infections in elderly or very vulnerable people, whose systems are compromised.
Firstly, do you have a good consultant who specialises in bronchiectasis. This is crucial as most doctors now know a lot about COPD which is similar but very different in its problems and needs. They are not sufficiently trained in bronch unless they have a particular interest.
lab tests on sputum often come back clear because, especially with pseudomonas, the organisms die off if it is not tested quickly and many labs do not have the ability to isolate the funny bacteria which we get.
Pseudomonas needs treatment withspecific antibiotics. Oral ciproxin is the usual one, or azithromycin taken long term three times each week. Some drugs like colomycin, or ceftazidime, are nebulised long term to keep down colonisation. And there is always IV if you have a really bad episode. I have had bronch for 63 years and have only had IV 3 times.
Of course you need to clear the mucus from your chest which is the best way of keeping the bugs down, keep active, eat the right food, keep away from people with viruses (First Defense up the nose before going into crowded spaces is a good idea)
Most of all, don't worry, get control of it and your medics and enjoy your life.
I think google is the most awful thing, i have just been crying from reading 20 percent perish with pseudomonas after 5 years of diagnosis but your post has helped me stop cry so thank you!
I am 25 year old and have bronchicestasis and pseudomonas and primary ciliary dyskensia which is where all these issues have come from.
i am taking gentamicin nebuliser twice daily as i cannot tolerate colisistin and i feel my lung function has got much worse since being diagnosed with pseudo and most days i feel like there is no hope, i can't even imagine myself getting old if i am struggling now.
Is there any tips you suggest and i'm from the uk so have the Usa managed to find a cure for this yet.
Hi, sorry to read you have Pseudomonas. I's a horrible, disabling infection to have.
I am colonised with it have it and a couple of years ago had many infections in a row. After much nebulisation of Gentamycin lasting months it finally went.
Touch wood I haven't had it since but I understand it will comeback sometime. I read that someone who had it said it came back after 10 years! It is very hard to get red of as it forms a bio film round itself which many antibiotics cannot penetrate. It will go eventually so hang on in there.
i have just had a sputum culture come back today after being on nebulised gentamicin for 7 months and it's come back as pseudomonas mucoid heavy growth.
I literally feel like there is no hope, funnily enough the sputum was actually clear so i was hoping it had all gone. 😩
Hi, My disabled son developed pseudomonas back in 2012 after a stay in the hospital for a surgery He has had rounds of Cipro and recently had an infusaport placed for IV Rocephin. I actually read about silver colloidal that some were nebulizing to eradicate the bug. I did try it and his last sputum didn't show pseudomonas any longer after all of these years of having it. Maybe it is a fluke and it will come back, but I am going to continue with a maintenance of 7 days each month of nebulizing it and hoping to keep it gone....best of luck to each of you Thea-mother of Michael- USA
TheaB - The use of Colloidal Silver - please be aware that the British Lung Foundation have no knowledge of any research being done on this form of treatment in the UK. It isn't in any guidelines that they are aware of, nor would they ever recommend anyone tries a treatment like this when it hasn't been recommended by their consultant.
Please take care.
Also, The U.S. Food and Drug Administration (FDA) has said that colloidal silver isn’t safe or effective for treating any disease or condition. There is more reading here -
Well, I for one don't put my trust in Pharma or the FDA...they have their place, but other options are out there. I did a lot of my own research and read about the risks and we each have to decide for ourselves what we think will be best for us and our loved ones. I appreciate your input, concern and further information. You take care as well
I too am life long asthmatic and diagnosed with bronciectasis about 4 years ago, I used to get continuous infections, one was pseudomonas I was given the correct antibiotics and it did go, I was checked several times to make sure it was clear. My infection was streppacocos which I seemed to be plagued with.
Good news is that after being put on a permanent antibiotic it has changed my life. Not always infection free but so much better.
I work in retail so am surrounded by people all the time. I do get very paranoid when people are sneezing etc around me, but make sure hands are clean and definitely agree with first defence spray.
Can't help with money side, but just to say health wise it can get better with correct treatment. Shirley
Hi Shirleyj, I had a double lungtransplant 8 years ago and now I am suffering from this bacteria pseudomonas. What anthibiotik did you take to get rid of this bug? Please let me know! Thanks, Susanne
Hi Meinname...the antibiotic that is prescribed for Pseuodomonas is Ciprofloxcin ...but this has to be prescribed by a doctor ( preferably Consultant) as it does have some bad side affects on some people
Love Sohara
Hi DunCaan, I too have bronchiectasis and also used to have repeated infections. It may be a silly question, but have you looked to your hygiene regime, it is all too easy to reinfect oneself. After a course of antibiotics , you should as a matter of course change your nebuliser mask and tubing and wipe everything down with anti bacterial wipes or spray. You could also ask for an alternative antibiotic to ring the changes. Sputum cultures have quite a short shelf life, (I think it's about 3 hrs.) but a blood test can show positive where sputum can show negative. More than three infections in a six month period usually warrant a long term antibiotic such as Azithromycin. Hope some of this may help. Whatever happens, don't panic.Talk to your consultant there is always something that will help. Mike.
Thanks Mike for your reassuring words. Helpful as today I am feeling low having to continuously clear my lung. I see consultant on Wednesday - 1st appointment. Hope he is good. Will keep you informed. Oh and good advice re: avoiding reinfecting through hygiene regime. I use hand sterilising gel throughout the day.
I know mask use is fading out BUT I can't stress the importance on using one... try to buy a cotton or silk one.. they were plentiful on facebook when covid was at its worst and I read that people were trying to avoid wearing them as they had breathing problems ... its not worth the risk ... I hardly went out in all of the 2 years it was rife but when I did I and my other half always wore a mask ... and guess what neither of us caught it ... If you have Bronchiectasis you definitely need a specialist consultant so put your foot down with your GP if you haven't been referred..
Don't worry about upsetting .. its your body and you have to keep it safe .. to keep on top of it ...
Also if the meds are making you breathless don't put up with it ... its important they have whole range of treatments they can try ..
I don't know where innthe world you are but I'm with The Royal Papworth in Cambridge UK... THEY ARE THE BEST ,,, gentle, kind, understanding and very efficient... I recommend them very highly
I have bronchiectasis ( and am 57!) and have had pseudomonas in the past. My understanding is that although the bug can be hard to clear it is not necessarily that aggressive. I had treatment with ciprofloxin originally and when I have had subsequent chest infections often it is other usual bugs (like hemophilus) which cause the problem and so usual antibiotics work. It is very frightening reading about it on the net and I agree with what others say that it is only a major issue if you are very weak or immunocompromised.
I know what your going through ,I go have had this bug ,I was treated with doxycycline antibiotics and predisoline ,,,,I have to say I was pretty poorly poorly for some weeks ,but once the medication kicked in I felt much better ,like you I am asthmatic and have Bronchietis ,make sure you have you have your flu jab ,and ask for a pneumonia jab to ,but please remember you can't have the flu jab while on antibiotics ,good luck ,wishing you a speedy recovery ,
Hi DunCaan, I too have Bronchiectasis. I too was told I had colonisation in my lungs. Scarry, I did not know what to say or ask. I was 64 and thought I was never going to feel better. I was taken into hospital 4 times with pneumonia and when my organs began to fail my husband thought he was going to lose me. However, once I was diagnosed with a second CT scan (it took 2 years). I did get help from my Consultant and I am now on Azithromycin 3 days per week. This wonder pill (an antibiotic) has given me my life back. I feel really well and have only had an asthma attack with a really nasty lung infection once in the past year. There is hope DunCann you can get help.
I must ask, have you a Consultant? an Asthma nurse you can ring if you are in doubt about your condition? Emergency medicines at the ready? All these things will help you feel in control again. If the answer is no. Ask your GP to refer you to a local consultant who knows about Bronchiectasis. I did and it was the best thing I ever did. I am now on annual check-ups. So good luck and if you need any further help you have come to the correct forum. Just ask, I or someone else will answer you. They are a nice helpful lot on this forum. Take care. Maximonkey
Thanks Maximonkey for your response. Good to hear from fellow sufferers experience. I see my consultant for 1st time on Wednesday - fingers crossed that he is good one! Best wishes
Please try not to be too scared by pseudo. Many bronchs are colonised with pseudo and there are medications which can help to keep it in check. My colonisation is heamophylus and unfortunately I cannot take prophylactic drugs like Azith. Lots of us who are colonised nebulise antibiotics.
One thing to note is that the normal sputem samples we put in would only be 'cooked' for a couple of days and pseudo usually takes longer to grow. I sometimes put on the form cf protocol, whereby if you are lucky it will given longer.
Agree with others here to stay away from lots of sites on the internet. Not this one of course. Bronchiectasis R Us is another very reputable forum packed full of knowledgeable bronchs.
Cofdrop thanks again for replying to my post. Still worried about the future! Seeing consultant on Wednesday - hope I have confidence in him. Best wishes
I have had Bronchiectasis now for some years and a lifetime of Athsma/Pleuresy/pneumonia. I have always used Doxycycline but this time around they are hurting all my joints and feel more unwell on this than I have ever done, has anyone else had these problems.
I've had pseudomonas in my lungs which have colonised, had iv antibiotics in hospital for 2 weeks and nebulised collistin antibiotic at home for over a year, still got the pseudomonas. I've started brewing and nebulising colloidal silver and also drinking it. I've started to feel a little better lately and believe the silver is at least natural and can't harm my liver or the 1 kidney I have so am seriously considering stopping tge pharmaceutical medications.
Ihave a Pikk iv w antibiotics and pump now going on 14days for colonized Pseudomonas. This is the 4th time in about 8 mos. NOT good., If it is colonized in you u. they may prescribe oral Cipro 750mg twice a day for 14 days or even longer, which seems to make it more tolerable but willnot cure it. Keep up your lung clearance. I use an Afflo vest and saline in nebulizer 2x day but shower after each whihc is exhausting but so far the only way to get it out, coughing it up in shower. See a good Pulmonary Dr and also get an Infec tious Disease DR they can work together on your meds. So Sorry u have this too, it is a horrible disease.
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He has had rounds of Cipro and recently had an infusaport placed for IV Rocephin. I actually read about silver colloidal that some were nebulizing to eradicate the bug. I did try it and his last sputum didn't show pseudomonas any longer after all of these years of having it. Maybe it is a fluke and it will come back, but I am going to continue with a maintenance of 7 days each month of nebulizing it and hoping to keep it gone....best of luck to each of you
Thea-mother of Michael- USA
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