Well just got my results back.... they were long awaited whilst my dr ‘read’ them. I week and a half in fact.
Been told the infection is
Pseudomonas Aeruginosa. I’ve read up it’s a superbug and many antibiotics can’t shift it.
So unhappy that I’ve had to wait.
I’ve been given Ciprofloxacin 500mg 1 twice a day, that I’ve started tonight.
Any advice would gratefully received x
Oh dear Dawnsunny. Love and sympathy xxx
Have you had this winter?
No I haven’t but lots of people have on here so am sure someone will reply xxx
Hope you feel better soon, take care. Love Bernadette 😳 xxx
Thing is I don’t actually feel ill, I’m coughing a bit and mucus is darker and a little more than normal.
I have mild Bronchiectasis. I’m sure I’ve read some bad things about this infection but can’t remember details.
I’m worried it’s getting worse tho?? x
Dawnsunny Pseudomonas is an extremely nasty bug. I have had pneumonia caused by it. A bad dose can be life threatening. Ciprofloxacin is the antibiotic that works with the infection. I have bronchiectasis and I ended up in hospital with the Pseudomonas bug while I had a trachie in. I have been mainly on that med for lung infections since my first attack some 15 or so years ago. I am glad that you do not feel sick but if your temp goes up you seek medical assistance immediately.
Gosh that’s so very scary, I’m not sure what to do to prevent it getting worse, I have real problems with the breathing exercises and can’t get up mucus ☹️. So atm Ive just started my antibiotics and just praying 😞, I’m so angry at the surgery not taking things serious and making me wait almost a week before giving me the antibiotics I needed.
Would you have started your rescue ones, even if they weren’t the right ones whilst you wait for the results? Just so I know for future infections x
Dawnsunny yes take the antibiotics that you have on hand if you do not have the cipro. I was like you for many years when I was first diagnosed could not get up mucous. And I have an autoimmune problem so that does not help in my case in terms of infections. These days with the worsening of my bronchiectasis I have too much mucous! So for me it has been ongoing infections. But that may not be the case for you everyone is different. It would be upsetting for you having to wait for the meds. It is a good plan to always to have some on hand. I hope your infection settles quickly for you. Take care. x
Hi Dawnsunny,
I have been colonised with pseudo since 1986. When it becomes troublesome I take cipro 750mg twice a day for 14 days. Once it is in there it is usually lurking, even though it doesn’t always show up on the lab plates. Best thing is to make sure that you clear as much mucus as you can out of your lungs to keep the numbers down and take cipro quickly, for at least 14 days as soon as you feel that it is having a party.
How do you get it littlepom?
It’s in the atmosphere. so it’s just a matter of bad luck. Loves hot and damp places most so hence likes to settle in our damaged lungs. You can’t pass it on to anyone. There is another hard to shift bug called non tuberculosis mycobacter which is colonising more and more people with damaged lungs and airways in the same way. Luckily I have avoided this so far.
Some people can get it on their skin if they have a wound or skin condition. This is why I avoid jacuzzis like the plague. My GP used to say that they were pseudomonas soup makers!
Hi Dawn
Sorry to hear you have grown pseudo. Pseudomonas can be eradicated but many people are colonised. This isn't as dramatic as it sounds. If colonised it can just lay around dormant and then come out and party, in much the same way as being colonised with haemphillus. It can be a nasty so and so, especially in CF and non CF bronchiectasis.
Cipro is a 'go to' oral antibiotic for pseudo but I would just say watch out for sore tendons. I get tendonitis with Cipro but am lucky enough to be able to do my IVs at home.
Don't despair - hope the Cirpro helps and you feel better soon. I agree I don't feel as unwell often with pseudo as with some other nasties but funnily enough my consultant knew last time straight away because I looked so unwell.
cx
Good info cofdrop.
I’m just trying to understand it.... but yes thank you all xx
It has come as a shock to you Dawn. Please let us know if we haven't explained anything well. It is very important you feel you do understand. It's easier now for us to 'get it', that's because we have muddled through for years and years, well before the internet, but there is no reason now for us not to be clear enough. Please tell us and ask anything you want. If we can't answer we can find out for you and we would all be happy to do so.
The only daft question is the one you don't ask.
cx
I guess I’m not understanding your first paragraph. Words like colonised, heamphillus CF etc.
But thank you so much for taking the time to explain xx
Really sorry Dawn but thank you for letting me know so I can attempt to put it right
Heamophylus is short for Haemophylus Influenzae which is a bacteria which we get within the lungs. It is what they call a gram negative bug (which means it has a biofilm around it) which psuedo also has.
CF is cystic fibrosis. (A genetic cause of bronchiectasis). People with CF have bronchiectasis but not all people with bronchiectasis have cystic fibrosis.
There are some bacteria in the lungs which will make you feel ill but once treated with antibiotics the bacteria will be killed.
With pseudomonas, as with heamophilus sometimes these bacteria can be eradicated. Colonised means these bacteria inhabit the lungs permanently but don't always make us feel ill. Sometimes they build up their numbers and then make us feel unwell and need antibiotics.
I am hoping yours is a one off infection.
I hope my feeble attemps at an explanation hasn't confused things more for you, but if so please let us know.
I am not medically qualified, so please if anyone thinks my explanation is in any way incorrect, please correct anything - I'm not that easily offended. You can also speak to the nurses at BLF Dawn.
Best wishes
cx
That’s what we’re here for. Ask away anytime. Xx
Just finished a cpurse of coprofloxin after doxy did not work no tests done though. Feeling better but not there yet. I thought i might have aspergillus because i have been cleaning in a bungalow for an older person and the place had 3 years of dust and mould. So not going there again.
Take care hope they work for you
So sorry you have a bad infection.. hope the antibiotics work for you.
Take good care xx
Pseudmonus is a naturally occuring bacteria. It is present in the environmet and we come into contact with it every day. Mostly our bodies deal with this. If you have reduced immunity or a condition like copd it can become a problem in the lung
It is often accuired in hospital through personal ventilation. Some types of this bacteria can be drug resistant. Ciprofloxin is one of a small group of antibiotics thst still control this.
The bacteria can suvive with or without air. And often can be found underneath mucus. Therefore it is important as part of the control to clear any mucus daily.
As you can see many people may well have this and not even know until it flares up. I hope the tablets work and you feel better.
Hi. I thought that Cipro was the only oral drug for pseudomonas as l have a heart condition l am not allowed to take this so at present am hospitalised and on infusions and nebulised colomycin. l don’t think there is anything else for me unfortunately so they are having a go at eradicating it. Keeping my fingers crossed.
I was diagnosed with pseudomonas aeruginosa and staphlococcus aureus a couple of weeks ago. Prescribed flucloxcicillin 500mg four times a day for seven days. I feel a lot better but am wondering if the bug has gone or not. You would think the dr would ask you to submit another sputum sample, just to make sure its gone. Hardly any sputum now though and cough much less.
Take care dawnsunny. the people on this sight may not have a certificate to say they are qualified but they give advice that you can understand and will help no matter what the situation and if they don't have an answer they will point you in the right direction. It's like a being wrapped in a warm blanket and offered a cup of tea. X
Don't worry. It all seems very frightening at first but you learn to live with it. I have Bronchiectasis with colonised pseudomonas and I'm now on 3x a week antibiotics (Azithromycin) which keeps it under control pretty well. Can't emphasise enough how important it is to get the mucus up and out (don't swallow it!), otherwise it will become infected. You really need to see a specialist. The average GP surgery is not very knowledgeable about this. A chest physio will show you how to get it up successfully. It can be hard work and it is tiring but well worth the effort. Exercise is good at bringing it nearer the surface to then cough out. Good luck. There is some good advice on this forum and I have needed it and used it in the past.
Thank you , all the replies have been so supportive.
I do worry about not being able to bring up the mucus and therefore causing more damage.
I’m just waiting for a new referral to my consultants Bronch physios, hope it’s soon! X
I called my consultant today, just to relay what infection I had, as it’s the first time and a very scary one by all accounts I wanted to check my gp was treating it right. He says it needs ‘eradication therapy ‘ this involves taking cipro for 6 weeks!
He did tell me to stop it straight away if I get any tendinitis in my heel and call him back straight away.
I’m wondering then if I’ll need to have IV ??
Ive also been to register with another Dr, can’t trust the one I’m with to do the right thing and Swiftly.
I pray things go ok x
Hi Dawn have you managed to shift your bug?i also have it I am in hospital now om my last day of iv antibiotics and don't feel any better and I can't have cipro as they make my breathing even worse I am feeling totally lost hope you are feeling better this is pure hell kind regards scooter
Hi, I’m so very sorry to hear you are having such a bad time .
After the 6 weeks of Cipro antibiotics finished and another test showed it still to be there we did nothing.
The consultant has told me to just carry on with the carbocisteine and to use my flutter to clear mucus.
He has said that whilst I don’t have any other symptoms to just carry on, that the Pseudomonas is dormant for the moment. I so pray it stays that way as I can hear from others that its not nice when it plays up 😞.
I guess the only thing I can do is carry on eating healthy drinking lots of water and exercising, and to try not to catch an infection.
What symptoms did you have to cause you to end up in hospital?
How long have you had Bronchiectasis?
Hope you get through this soon 🙏🏻
Hi Dawn thanks for your reply you seem in the same situation as me all.my previous sputum test come back positive and I was doing the same as you but was gradually getting worse and worse since xmas and then 2 weeks ago had to call an ambulance as could not breath at home and now they are sending me home with another oral antibiotic saying I will feel better soon I just find it hard to clear the Mucas I also have a flutter and an aero sure thing but still struggle but at the moment my sats are 94 but it's when I move I realy get out of breath.so we are both stuck with this awful bug then but after reading things on this site I am not as scared as at first thought I be dead very soon then I get in a panic and it makes things even worse.so have you been feeling ok since your last post?i have had copd for about 7 years but always had asthma and copd seems to run in the family and I am only 46 with lungs aged about 150 I think they just don't seem to tell you anything or listen to anything I say and I live alone and have been housebound since xmas and every time I rang the doctor I had to try and get a sputum sample in the them and the time I managed to get the antibiotics I was nearly dead then felt ok for 2 weeks then it came back and have had to beg the doctor for more antibiotics feeling like a drug addict begging for drugs and I just got worse and worse hence ending up in hospital and now I am praying that when I go home I not be ill again it's a vicious lonely scary circle and my doctor seems to know nothing about are bug I just feel lost but your post and others gave me some hope as they all just do my head in I really don't feel with it sorry if this had come out wrong and hope you are keeping well and have the support that I think we need to cope with this kind regards scooter
Morning Scooter, I totally feel your anxieties. I too can feel really down and scared . Are you under a consultant? There’s also the nurses at the BLF, you can call up any day and chat to someone that knows how we feel and can offer advice on health and can put us in touch with support groups. I do find speaking with people helps so much.
I’m looking into meditation, the panic I feel when can’t breathe (I’m asthmatic too ) makes me worse so I need to learn to relax and slow my breathing down.
I’m surprised you don’t have a rescue pack of antibiotics at home?, I have these and bottles and forms so I can send in a sample for testing. Then if I start my antibiotics I call the surgery and let them know so they can organise a new pack ready for the next time. That would certainly help you, I’d be so angry having to battle with dr surgeries when I am already stressed and poorly.
If you can get to any of the support groups when your feeling better or ask your local pulmonary rehabilitation group for help, they will teach you most things to help when you feel like this.
And of course ask as much as you need on here.
Wishing you well scooter. 🍀
Blimey that was fast thankyou,I havnt seen a consultant for over 4 years when I first got the bug and had appointment for February then they cancelled and now it's July but the time I saw the last one I thought what a waste of time and I not realy sure what they do anyway I've got more information of this site I don't even know what pseudo I have I will ask when they come round in a min I just always get in a panic when they come round I still don't feel with it but they say my oxygen is ok so I be fine but I feel like I have the flu still but am better than when I came in and I will ask if I can have some antibiotics for home that would be a good idea but I don't know if I could phone someone like blf I get to nervous I hate even having to ring about getting my medication ordered but I think I gona have to ask for some help as I have turned in to a prisoner in my own home and never go out.can you tell me if you have been feeling ok or do you still think you have some symptoms as I think I just been getting worse and worse for ages and I am scared I just gona end up back here again soon and wondering why they are not trying to get rid of the bug and after reading about it am wondering why they havnt tried 2 antibiotics at the same time?they just want me out of the way but I think I be exactly the same in a few weeks so are you feeling well?😳🤒🙏
Ha, yes I’m free early morning I’ve just taken voluntary redundancy, was worried about how this will progressed, so thought I’d best whilst offered.
January of 2017 I had ?a virus where I was in bed for 4 days, felt sooo bad, almost hallucinating, my family have never seen me like this, I usually battle through any illness and keep going. This was when I started to cough up blood. I’m wondering if this was a flare up?
I haven’t, thank the Lord, had this since. Daily I feel ok, a little breathless but nothing that stops me doing things. I’m still able to walk daily and include a slight hill.im coughing up mucus, more of late but my consultant says if no other symptoms then don’t start antibiotics and don’t send in a sample.
My physio says that lots can carry Pseudomonas etc, so it will show up in our samples, but it’s dormant when no other symptoms.
I also read a book written by a man with Bronchiectasis and he says he was told to ‘keep well’. That way infection can be kept at bay. So to aid that I do the healthy eating, walking, and water. I dab a barrier cream on my nose if going out. I take supplements. Not sure if all this is right but I’m not stopping it if it seems to be working! I don’t believe you can eradicate some bugs.
Yes you def need to get out there, get as much help as you can. Write all your questions down and make that call that way it will reduce the stress of the call!
Scooter do you have Facebook?
Where are you on your Pseudomonas journey?
I have asthma and I am on my 3rd IV treatment for pseudomonas. Whoever I feel better my IDD stops my antibiotics theni get it again 2 weeks later.
Hi, mine is strange in comparison to what I read from others.
I have been told I’m colonised with Pseudomonas, because I have had this in my routine sputum samples over the past year. Because I haven’t had any symptoms I haven’t been treated with anything.
I’ve won battle with pseudomonas
Pseudomonas and Colomycin nebs
pseudomonas lung infection - and scared!
