I was misdiagnosed for approximately 3 months of going back and forth the GP with shortness of breath … told it was viral then anxiety ,hormonal ,sensitivity to the beta blocker I was on for menopause palpitations took me off that as HRT has resolved this withdrawal was horrendous till one locum said let’s have a sputum sample and I came up positive for peseudonymous I had 3 rounds of AB amoxicillin and doxycycline but still suffering breathlessness so was prescribed seretide and salmol I have also since been put on carbocisteine to relieve mucus
Just before Xmas I had another infection and was put on clairthromycin this has been on going since June last year can pseudomonas damage your lungs this badly if not caught early?
I have had CT scan a week ago which I am waiting the results from I’m at the end of my teather as I haven really been diagnosed with anything I’ve been waiting for a lung function test with my GP since November
Just wondering if anyone else has had a similar experience
Tia x
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Ask- no insist- on being referred to a consultant. Not many GPs have the training or the nous to manage lung complaints. Clarithromycin is brutal, but it's strong. Much more likely to deal with pseudomonas. Type in pseudomonas in the topic box, or phone the help line 03002225800 to get some advice from people who know much more about it than I do. The sooner this is dealt with the better. (I had to wait 6 months to see a consultant and the NHS is in a worse state now, so the more relevant advice you can get meanwhile the better.) Good luck and best wishes.
I agree completely with Alberta56, insist on a respiratory consultant referral now, don't wait untill you feel desperate or for it to be suggested. Gp's have little to no knowledge of respiratory and lung conditions, it's a whole load of guessing, try this and see!! In the mean time sadly, you suffer, the NHS wait can be long, so the sooner you are on the list the better, sending you lots of good wishes, I hope you get some answers and helpful treatment very soon Nicola x and definitely ring the helpline as well x
I wholeheartedly commiserate, many of us have been where you are now although not all of us have pseudomonas. Unfortunately its a very stubborn bacteria and can be managed & controlled to keep the levels down. It needs very specific antibiotics (I'm sure amoxicillin isn't one of them). Carbocysteine will at least soften the lung mucus making it easier to expel - and expel it we must, cannot leave it lingering in tge lungs in the perfect warm wet environment for the bacteria to multiply . I think you'd definitely benefit in calling the professionals on the helpline ASAP. They can give you advice & guidance on what to get from your medics The CT scan should show what's going on in your lungs and show any damage - I only hope a consultant will interpret the scan not the gp.
Thinking of you and hoping that diagnosis comes soon then the appropriatetreatmentfor ongoing infections and pseudomonas.
PS the registrar I was seeing when I was referred showed me my scan and explained everything. (Small Airways Disease on top of the asthma).
I agree,get gp to refer you.carbocysteinr thins mucous making it easier to get up - it's important go dedicate a bit of time,perhaps twice a day or so,while ill to getting it up or it will keep getting infected.if u look on aluk website,you'll see videos on lung clearance techniques eg acbt= active cycle of breathing technique,huffing,postural drainage etc.doing ths should put you more in control and improve breathing lessen coughing etc in betweenPersonally I use disposable cups so u can see how much,colour × thickness to keep a record+ see improvement if antibiotics are working.i dispose of with tissues in,in nappy or dog poo bags knotted.its not as awful as it sounds. Dont let yr antibiotics run out if stoll feel ill+ looks infected,see dr for an extended course if u need them.stop- start just allows infection to escalate x
As others have said here, push for a referral to a respiratory consultant ASAP. The helpline here are fantastic. They will give you top advice and encouragement.
It’s a bug that can floor you very quickly… fatigue, sheer exhaustion, loss of appetite and generally feeling unwell and my skin colouring looks pale. There is the potential to develop lung scarring with every infection so try to clear as much mucous from your lungs as you can at least a couple of times a day… a chest physio can help with techniques as some work better for others. There’s also YouTube videos you can search for chest clearing.
It’s important that you try to send sputum samples in at the onset of symptoms or phlegm changes colour, thickness consistency etc. especially before starting any antibiotics.
I have severe bronchiectasis and deemed to be colonised with pseudomonas therefore my gp is happy to send my samples to the lab as long as I have 2 of the following 1) generally feeling more unwell fever etc 2) changes in sputum colour, secretions volume or consistency 3)breathing is more laboured or oxy sats lower than my base line.
Of late however, I’ve had it rare it’s ugly head especially after being on different antibiotics for tooth extraction and another for ear infection. Could be coincidental but I suspect the other antibiotics were suppressing certain bugs and allowing the pseudomonas to flourish.
I take nebulised antibiotics long term to try to eradicate or keep the pseudomonas numbers low.
hello Tia, I'm sorry you are having such an awful time, but I can only repeat what everyone here says, insist on a referral to see a respiratory consultant, then you will know what you are dealing with, have correct medication and be shown how to chest clearance. even if you are already doing this, having someone go through it helps massively. before I was eventually diagnosed cf, I had 5 GP appointments until I was eventually referred. At the time, I believed GP's knew everything, I was so wrong!! x
My husband has bronchiectasis and had numerous chest infections last year. Several courses of oral antibiotics and steroids failed to get rid of the pseudomonas. His consultant told him that oral antibiotics do not reach the deep seated pseudomonas bacteria. He had to go into hospital for a 2 week course of IV antibiotics in September. This did the trick and he now takes Azithromycin 3 times a week. He has had one chest infection since but tested negative for pseudomonas.
Goodness, what an inefficient lot you have 'looking after' (ha!) you! Can you access your CT result on-line? I am registered for internet access to my health records so can check results myself. I agree with Alberta though, ask to be referred to a consultant if your GP can't come up with proper answers. Best wishes, I do hope you get some answers soon and a proper care plan. Sally xx
I take low dose antibiotics weekly but still do get the nasties which they treat with strong antibiotics but my immune system is messed up so I’m waiting to go on bio meds so getting an infusion soon. Don’t worry the antibiotics will sort them out as long as you recognise when you’re under the weather as they’ve caught me out a few times when I haven’t felt ill but my sputum has told me as unfortunately I don’t get much sputum so that’s how I now know.
thank you all ..I will get the CT results in approximately another 1-2 weeks the radiologist will send the findings to the GP as you have all advised I will request a referral to a respiratory consultant
This makes my blood boil. These antibiotics won’t clear pseudomonas. You need ciproflaxin. It’s an evil one though so make sure you read the leaflet. You will need at least two weeks course. Failing that I’m afraid it’s iv antibiotics. If it comes to that ask a bout doing them at home. I hope you feel better soon. Good luck.
The side effects are devastating and despite what doctors tell you are not rare they just go unreported. I got poisoned and disabled by this drug 3 years ago and my condition is getting worse. There are many support groups on Facebook and other social media networks for people who have had their lives destroyed by this stuff. Doctors have received several updates on warnings not to prescribe this drug unless absolutely last resort but I have not met a doctor yet that has read the warnings
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