Hi. Has anyone with bronchiectasis found out they have the Pseudomonas bug? If so, did you have to have a special test or was it found in a sputum sample? Thank you 😊
Pseudomonas: Hi. Has anyone with... - British Lung Foun...
British Lung Foundation
Mine was found in my sputum sample and I was sent straight in for iv drugs as I hadn't responded to high doses of antibiotics and can't take ciproflaxin ,good luck x
I have Bronch and the dreaded Pseudo bug keeps on coming back to haunt me from time to time in last ten years!
It is usually picked up through sputum sample. I had it back in Aug and had two weeks of antibiotics, if it grows back again, my consultant said they would have to consider IVs which are now done at home, not sure how that works out but I'm guessing they want to avoid patients going into hospital unless absolutely necessary.
I'm also allergic to Cipro and Azithromycin which are two drugs they use to eradicate Pseudo.
Is this the first time it has been picked up for you?
I hope you are not too poorly from symptoms X
HelloThank you for your reply! I haven't been diagnosed with it but getting really poor care from my GP that I'm trying to do my own research 😒 I feel so poorly and have only been clear of infection once in 18 months and that was only for 2 weeks and it's back again 😪 I've been referred to see a consultant but received a letter saying there are no appointments at the moment but are trying to recruit more doctors. Guess I'll just keep going. Put my big girl pants on and smile! Thanks again and I hope that you are OK x
I totally agree with Littlepom, don't take no for an answer.
It needs to be dealt with relatively quickly from my experience with Pseudo and my GP, as good as she is, wouldn't have s clue, everything is usually managed treatment wise by my Bronch specialist consultant.
So sorry to hear about you feeling poorly, I get so breathless with it, that's when I know I have it, hardly no other symptoms and sputum is usually clear in colour and very unlike my usual Bronch infection when it is full on symptoms.
I really do hope they manage to eradicate quite quickly, that's a long time to be feeling so unwell.
It only recently came back after some 6-7 years for me.
I hope you feel better and get it sorted soon 💐
I have lived with it since 1986. Once it has colonised it lurks in there even if lab tests are showing that there is none there. The aim is to keep the numbers low enough to be able to lead a normal life and not have exacerbations. Usually 14 days 750 mg oral ciproxen or ongoing nebulising an antibiotic such as colomycin, tobramycin, ceftazidime or meropenem or occasional I V which can now be self administered at home once set up by the opat team at the hospitalThis is why I do hope that you have a bronch specialist who is an expert in dealing with it and will decide which route to take.
It is no good relying on the GP who knows virtually nothing about bronch or a general respiratory consultant who knows hardly any more because they are not sufficiently trained and see very little of it.
If you don't have a bronch specialist look on the internet for one, usually at large teaching hospitals. Take the name to your GP and insist on a referral. Don't take no for an answer.
Thank you so much. I did some Googling and my closest is 2 hours away though would travel anywhere at the moment to get proper help. Hope you are ok x
Believe me it is well worth the journey to get the right treatment. I have been travelling well over an hour each way to my con in Bham since 1982. The stark difference was brought homw to me when I was in my local hospital after i nearly died because a pneumothorax in my lwft lung meant that my more severely damaged right lung couldn't cope. The lead respiratory consultant there said ' bronchiectasis is a disease of the airways, what makes you thinl that you have lung damage?' 😱 oh how my specialist did laugh when I told her!Keep pushing. When you get the right support from the right consultant your condition will be managed so much better and your quality of life improve no end.
I have bronchiectasis and have had pseudomonas frequently over the years. As has already been mentioned once colonisation sets in its just keeping the levels as low as possible. I can’t take Cipro so have colomycin in a nebuliser twice a day. It’s being particularly difficult at the moment and I have klebsiella as well! My consultant is keeping me on colomycin until at least February - slow but sure is his approach.
I was very poorly a few weeks ago, my sputem was clear but doctor phoned to say I had a very nasty bug, like you mines always been green if infection this is the first time it's been clear. He did not say what the bug was but I was put on co-Trimoxazole for 14 days. I had to wait 2 weeks after finished the course and send another sample in. Waiting results as present.
Thank you for your reply. Mine is permanently either green or yellow. At the moment there is a really nasty taste when I cough. I’ve just finished Doxycycline but it hasn’t touch it. I hope you get your results soon and that you are ok. Stay well over winter.
Hi It was picked up in sputum test . I felt really ill. GP hit it hard with ciprofloxacin. That was 10 years ago. As far as I am aware I have not had it since! Good luck.
found in a sputum sample on one occasion a few years ago. Mostly nothing ever grows in my sputum samples. As pseudomonas is likely to remain as a coloniser in one's lungs along with haemophilus I have doxycycline as my standby antibiotic, but ciprofloxacin if the doxy proves ineffectual.
Hi.. Found in a sputum sample. Had ciprofloxacin but too strong an antibiotic for me so never again.Pseudo seems to wax & wane but if it's not ruling the roost(I. e 3 positive results) doctor leaves. Good luck. X
I have Pseudomonas originally picked up in sputum sample. First coven Ciprofloxacin with IV Ceftazadine, then given Meropenem IV in hospital and put on Colomycin in a nebuliser. When I was told to have a break and submit a sample it came back. I will now use the nebuliser with Colomycin until spring and then stop and test again.
Wow it really doesn’t sound nice. Does it make you feel poorly? Thanks for your reply.
When it flared up fully yes, generally just under par , it seems to have completely knocked out my get up and go. I’m trying to build up plenty of exercise to see if that helps. The nebuliser with the Colomycin does seem to keep it down. I will be using it all winter now without a break. Hope you get it sorted soon.
Hi, thanks for your reply. I’m not lazy but struggle with the exercise as I also have fibromyalgia. I walk my 2 dogs every day and do my housework, then I’m ready for bed! I do want to do more exercise but think it’s going to have to be Pilates or yoga. Stay well! 😊
I also walk my dog and a bit of gardening when I can. I am going to try to swim more often and I agree yoga and Pilates seem perfect. I can’t manage many gym type exercises. I think all we can do is what we can a little at a time and slowly try to build it up. If you walk your dogs you are doing more than recommended anyway, 30 minutes 2/3 times a week I do more than that daily with the dog.
I’ve had pseudomonas many times, once six iv courses of ceftazadim didn’t clear it, but simultaneously taking Ciproxin and Septrin Forte did. I now keep three antibiotics, and do sputum test after finished course. This year has been bad, so was going to be taken to hospital by daughter to set up for i.v. at home, but she badly injured leg and ankle few days before, eventually had op that pinned and plated it, told could be several months before can use it. So as widow living alone have to wait. In September had pseudomonas, cleared by Septrin, then sputum showed Stenotrophomonas Maltophilia, further Septrin course cleared that but pseudomonas back, so now taking azithomycin. Feel off, go hot then cold, but not raised temperature. Found best respiratory consultant in area by paying to look on line at all possible. I have PCD, including bronchiectasis, that was born with. consultant was seeing virtually useless, and have to explain to new doctors what it is. It’s on Health Unlocked separately, but recently they included me in BLF. Good luck to us all, now going to Nebulise, Jean xxx
Hi Jean. Thank you for your reply. You have a lot going on, I do hope that you & your daughter are ok. That’s one thing I find strange. Through all these chest infections & feeling really grotty, I never have a temperature? Going to bang on doctors door tomorrow. It’s so hard to find a clinician who understands it. You take care of yourself xx
Mine wasn’t picked up on several sputum tests but I was pretty much permanently on antibiotics. A bronchoscope also failed to find it. It was eventually found when I was having my sinuses cleared out during an infection. They were reluctant to do it when I had the infection but it would have been difficult to find a time I didn’t. If you get more relief from cipro than other antibiotics then it’s a very real possibility. The course must be at least two weeks though. This needs sorting by a Bronchiectasis specialist not your GP. Good luck.
This is what I’m finding interesting, that a lot of the time it is being picked up with sinus issues. I have a septal button & titanium plate across the bridge of my nose as it was broken by my wonderful first husband. I get so many infections in my nose and I’m wondering if it is lurking in there and hence, giving me chest infections. I’ve only had amoxicillin, doxycycline & Clarithromycin. Clarithromycin Is the only that cleared it up but it returned 2 weeks later. I’m a bit fed up at the moment! Thanks for your reply & hope that you are ok.
I was nearly a year before mine was diagnosed and another six months before I had a course of iv antibiotics followed by colomycin nebulised. I’m immune compromised so often ended up in hospital during that time. My infections often started in my sinuses and then went down to my lungs. I’m still on the colomycin over four years later and have only had one infection during this time. However I suspect that had also been because of being isolated. You really need to be getting your sputum checked to see which bug you have. Think you may need a few more of those big girl pants.
Mine's been picked up from a sputum sample. As I was just about to start my winter Doxycycline, GP said no need for anything else. Got a second opinion from the RESP team who said the same. I'm feeling much better already, having been on the Doxy for two weeks. I was extremely breathless and my oxygen dropped to between 85 and 90. It's now back up to 93 - 97. xx Moy
Hi it’s picked up in some of my sputum samples but only if I’ve had a break from antibiotics before hand. The antibiotics throw off the results on Petri dishes. If I take antibiotics it’s difficult to culture a true representation of what’s going on. I’m now on promixin twice daily and for doing a number of years. Spit is generally always dirty yellow/green so think lots of bugs there that I’m learning to live with as I’m not feeling unwell just my usual level of breathlessness. Prior to being on promixin and when feeling pretty poorly I had a number of iv courses to help kickback bacteria numbers due to colonisation it’s difficult to eradicator it fully
Mine was detected from sputum, I frequently go for IV antibiotics and., like others, can’t tolerate Cipro which is the preferred oral antibiotic. Joy x
Hi this was the start of my lung problems, whilst investigating, by bronchoscopy why there was a partial collapse of my lung they found pseudomonas. Treated with ciprofloxacin and two years on has not returned but the damage resulted in bronchiectasis and later a diagnosis of asthma.
Hello Lexilou, just seen your post. I am a 68 year old young at heart lady! I have had pseudomas colonised in my lungs for at least the las t three years, my previous GP mentioned it was showing on my sputem sample when I had a chest infection. He gave me several courses of anti biotics, my symptoms improved but I was left with a productive cough and the pseudomonas still showed on the last sputem test he did, he said not worth treating! So I carried on for a year, coughing up stuff , then I moved and went to the GP in my new area who sent me for a CT scan which showed bronchiectasis and of course a sputem test showed the pseudomonas. Unfortunately this was Feb 2020 so I have never seen a specialist although a lady rang me twice for a ten minute consultation which I can only describe as a farce. When I ring my GP surgery, I just get to speak to the receptionist or a health assistant. I had a telephone appointment with a physiotherapist who explained how to clear my chest, so what I have been doing is clearing my chest as completely as I can twice daily.That seems to help a lot. . I have now got an actual appointment in December at the hospital with a consultant Sorry to ramble on, so to cut a long story short I have not taken anti-biotics since Feb 2020 although the pseudamonas has always been there. Best of luck with your situation, but do keep clearing your chest. Best wishes.
Hello lovely, thank you so much for your response. You sound like you have been through the mill too. The medical care over the past 18 months has been horrendous. I’m so glad you have an appointment and really hope you get somewhere. Please let me know how you get on (only if you don’t mind!), interested because I care & because garnering knowledge is always helpful. I’ve been told they no appointments & I have to wait! I also have a lung nodule which I’m having rescanned in March. Thanks again & the best of luck. Stay safe & healthy x
Hello againl I will happily let you know how it goes, they described the appointment as a follow up and said I should get there half an hour early in case I have a chest x ray, so I've no idea what format the appointment will be . It's not until 8th December so I'll probably ring them up beforehand and get more info (if I can get through). Even though you can't get an appointment I would suggest you get info from the Lung Foundation about clearing your chest of mucous that's what I did before anybody contacted me from the hospital. Best wishes, take care. x
Yes wife had that a few years ago and had a test for it
Hi there, I have Bronchiectasis and I had pneumonia a few years ago. It was caused by pseudomonas and I didn't feel better until about one and a half years later. I do suffer from Lupus as well, so maybe that contributed to the slow recovery. Pseudomonas can be acquired from water. I try to avoid getting Pseudomonas by drinking boiled water only. As far as I remember it was found in a sputum sample, but I can't remember if a blood test showed it as well. Do you have it at the moment?
Hi. I have bronchiectasis and have had pseudonomas previously. Had to spend 7 weeks in hospital on iv antibiotics. Once they become colonised the trick is to try and keep them down as much as possible. Unfortunately I can't tolerate the nebulised antibiotics and orals are not effective enough so spend alot of time in hospital on iv antibiotics. Having moved from a hospital where there were bronchiectasis specialists to one that doesn't have any I deteriorated so have learnt the hard way that you need to be under a specialist. Have now moved again so that I can once again be under a Bronchiectasis specialist. It really does make all the difference. I'm afraid it's a condition that I have found that neither GPs or general respiratory consultants fully understand and as Littlepom always says, you really do have to be proactive and fight hard sometimes to get the correct care. Hope everything works out for you.
Hi Lexilou, If I feel a flare up coming on I take a sputum sample down to my gp surgery and insist it is sent to the lab to be tested so I'm given theright antibiotic, ( I always tell the receptionist it was the advice of a specialist , that often shuts them up ha ).Asked receptionist for some specimen bottles, make sure you write your details with it, and hand it in, don't take no for an answer.
I've had bronchiectasis since childhood , Have had so many different bacteria , but funnily enough was just told on Thursday I have pseudomonas, been given Ciprofloxin, I'm a bit concerned about one the side effects it has on your tendons.
Good luck 🤞
I was intrigued to learn that you have had pseudo for the first time since having Bronchiectasis as a child.
Does it feel different to having your usual Bronch infections?
I hope you don't mind me asking, I always find that we are all learning so much about our conditions from our lung buddies on this forum, this is far better than Google!
When I have been an inpatient in the past with Pseudo and have had to have IVs (mainly because I'm allergic to the two oral anbx that treat it), the hospital always kept pseudo patients very seperate because it can be quite contagious apparently.
I had also heard about it growing in water, something Jackieswiss just mentioned in her reply, but never thought of drinking my water boiled.
Ps Cipro really did mess up my tendons, my inflammation markers hit sky high and I can't believe I persevered with the pain for a good eight days or something when I was taking Cipro and didn't realise it was the drug that was doing it!
Lots of people can tolerate Cipro but I just wanted to mention that you will know if you're allergic and don't wait all that time like I did, I am sure that the tendon pain has never gone away and I am talking about me taking Cipro some 15 years ago.
Hope you feel better soon 💐
Hi Bionic Lady, so sorry to hear you are still suffering from the effects of the Cipro 😧 !
I was in hospital for one night in July but sent me home the next day because there wasn't a bed for me in the ward.
My respiratory nurse had a look at my test results and thought I should be back in hospital to receive the proper treatment, but again was sent home the following morning by the consultant in the emergency care ward.
I live in the UK and it was during the heatwave I was extremely breathless and in severe pain just breathing.
Had a temperature then was actually shaking with feeling cold , I had never experienced this before, I'm wondering if it could have been the pseudomonas then because my sputum was never tested.
I've noticed for the last few months I have been sleeping so much and when clearing my chest I’ve noticed the disgusting taste so decided to get a test done last week.
My gp surgery say your sputum only needs tested once a year ??? I wouldn't take no for an answer from the receptionist, got my result on Thursday and was shocked to hear it was pseudomonas.
I actually started drinking bottled water after hearing that pseud can grow in water.
I'm very rarely out so have no idea how I acquired this.
As you say B lady, I have found out more from this group , after all these years of living with bronchiectasis I am still learning.
Hope you and all our group members keep as well as expected 💕🌷💕
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