Advice needed re cultures

[24cc]

My consultant has thought for 2 or 3 years that I have a mycobacterium infection (NTM); the CT scans show progressive deterioration, I am aware my chest is not as good as it was a year ago and I produce more mid green sputum than I did a year ago with occasional haemoptysis. I have provided countless samples myself and via a bronchoscopy (and the bronchoscopy stirred things up so much I was admitted the very same day with a chest infection in December). But I heard yesterday that still nothing has grown from any of my samples. Does anyone here have an idea why they can't work out what is wrong with me? I'm beginning to wonder if I have something other than bronchiectasis and an NTM. All I know is that I am deteriorating and no one can/will do anything to help. Thanks for any suggestions.

[Patsy164]

Hi 24cc sorry nobody has answered your post it is probably because they don’t have an answer. Could you tell us what medication you are on and do you see a consultant for you bronchiectasis.

I have bronchiectasis with pseudomonas and severe asthma. I was really bad for many years and was taken in hospital December 2019, since then I was given 2 more tablets azithromycin and carbocisteine and saline nebules, which help. Before that I was suffering a great deal with many infections taking lots of antibiotics and steroids.

[Hidden]

Lab tests are notoriously bad at producing accurate results on which bacteria are causing the trouble in bronch. I am concerned that your consultant ‘thinks’ that you have an NTM. After so many tests this should have shown up. Also, you don’t mention pseudomonas which colonises so many of us and needs aggressive antibiotic treatment. Either by two weeks of oral ciproxen, long term nebulised antibiotics or occasional two week courses of IV antibiotics. Only a bronch specialist can decide.Your symptoms certainly sound as though some bacteria is having a party in there and is not being treated properly.

Check that your consultant is a bronch specialist and not just a general respiratory consultant. This is crucial because general respiratory consultants don’t have sufficient training or experience in bronch and tend to treat it like copd. Also GPs are way out of their depth.

If your consultant is not a bronch specialist find one as close to you as possible. They are usually based at large teaching hospitals. Take the name to your GP and insist on a referral. Don’t take no for an answer. I know that it is difficult with the pandemic but you need to get the ball rolling. The longer the state of your bronch is neglected the more your condition will deteriorate. We have to be so pro active in our own interests and vociferous in sourcing the right treatment and management. Good luck.

[24cc in reply to Hidden]

Thanks so much for your reply. I've only ever had a consultation with my named consultant once. All the countless other consultations have been with other doctors in the team and there's only one of them that I have seen twice. My named consultant lists bronchiectasis as one of his interests on bupa. My gp respiratory nurse couldn't even pronounce bronchiectasis so I've given up with them. No one has mentioned pseudomonas as a possibility. I'll ask about it at my next consultation in early February. I'm getting quite anxious about the unexplained deterioration the CTs are showing and I can feel.

[Hidden in reply to 24cc]

It is ridiculous that pseudo has never been mentioned. The doctors who have been seeing you obviously do not know anything about bronch. As far as a consultant is concerned I do think that you should start again and find a proper bronch expert. You are really being neglected and this us why you are going down the slippery slope.

[Hidden]

You’ve had an excellent reply from LP as always, but a couple of additional things crossed my mind. My understanding is that bronch patients should have their sputum cultured in line with cf patients (the neck of the patient woods I come from), which generally means for longer periods than considered ‘standard’, so it’s worth just confirming whether they’re following those guidelines. It definitely sounds like you’ve got an untreated infection, the issue is determining what, and that’s not always easy, although the obvious culprit would be pseudo, particularly if you’re not on any regular antipseudomonal treatment. I would also be asking have I grown anything at all, rather than taking the culture is clear as gospel, because it’s not necessarily the same thing: I frequently get told by junior docs that the child’s culture is clear, when what they mean is nothing obviously pathogenic, which isn’t the same thing. Yeast can culture in sputum (Candida species) and are often considered incidental, but can occasionally be causing problems in certain circumstances. The same with fungus generally, so I’d be making sure they’ve properly cultured for that, too. We were in a situation where the child had been manky for months and we were really struggling, only to move, and the new hospital process fungal samples twice as long as our old cf team. Lo and behold, fungus eventually found, along with confirmation she has a more antibiotic resistant strain of pseudo. That was November 2019, and although she cultured the fungus a second time in Feb 2020, it hasn’t materialised since in 20+ cultures despite all the clinical evidence telling us it is definitely still present and requires regular, ongoing management. There’s a suspicion she may have a second one that we’ve yet to culture at all in almost 2 years, but the treatment is thankfully the same. The reality is that treating blind is a staple of managing most superlative lung conditions, because sometimes you just don’t catch the bugs that are causing the issue on the day. That doesn’t mean they should do nothing, though, and just shrug and give up if nothing is changing. I also fully appreciate that access to tests and treatments in NCFB is (stupidly) not as good as it is for cf, but it’s not unreasonable or extreme to expect them to have properly tested your sputum for all possible pathogens, including fungus, for the correct amount of time, in line with the guidelines (see below)

You say this has been going on for really quite some time: have they just kept sticking you on the same antibiotic or have they tried different ones? Has any antibiotic at all made even a slight difference? How long are the courses they’re giving you? If your named consultant is genuinely a bronch specialist, they should be abiding by best practice, but it’s always possible they only have an interest rather than much in the way of actual expertise. If you’re that way minded, the British Thoracic Society guidelines for the management of non-cf bronch are available online and list the accepted best practice, including for the diagnosis and treatment of infections. It’s a long but very good read. I would also phone the secretary, tell them that you have an ongoing, untreated infection, that you’re very concerned, and ask for a review with your actual named consultant rather than the team reg or whoever else it is you’ve been seeing.

NTM are difficult, both to culture and treat, but it’s worth bearing in mind that the full time to process an AFB (the specific test for NTM) is around about 12 weeks, so the December sample won’t actually be fully cooked as yet. If none of the above apply, e.g. they’ve tried different antibiotics, they’re giving you courses of 14 days minimum, they’re confident there’s no fungal involvement, and yet you constantly remain the same or slowly worsening, it would make NTM the more obvious answer. No doctor would be quick to go down the NTM route blind, however I’d argue 18 months isn’t quick, and it doesn’t mean they shouldn’t do it in the face of a clinically worsening patient if they’re confident they’ve ruled out everything else they possibly can. At the point you’re coughing up green for months, I would generally expect pseudo or another typical pathogen to show up easily. The only other thought I had was if they’d sent for a TB culture? Remote chance, but again, it is a possibility.

[24cc in reply to Hidden]

Thanks for all the information. I only ever have antibiotics when I have a flare up; they improve the immediate situation but I'm always left that little bit worse with the underlying gunk. The cultures this time can have only had 6 weeks to grow. There was talk of treating me for NTM empirically but that seems rather drastic given how nasty the cure is. I'll raise the issue of a fungal infection and will be brave and query the doctor's experience in bronchiectasis. It'll be another phone consultation so I may find it easier to be assertive! Thanks again.

[Izb1]

Hi 24cc, you have been given some good advice on the replies here. I found that with bronch you are diagnosed and then left, nobody seems to look after you properly and getting the right meds are crazy. My gp is very good but just doesnt know how to treat it , the same can be said for the hospital consultant. You have to be quite adamant on getting things done which can be very wearing. Dont let things go and keep mithering, otherwise things get left and you get poorly. Good luck and I hope you find out what is wrong and get the right treatment x

[24cc in reply to Izb1]

Thanks for your help. I'm determined to find someone who actually knows about bronchiectasis.

[Izb1 in reply to 24cc]

I must say I have learned more from this site than any doctor or hospital. My sinus's got infected not long after diagnosis and that was left for far too long before either gp or hospital consultant sent me to ent, this has left me with alot of problems. I have been waiting for a sinus op for nearly two years and with covid now it will be left again. This is something that I have learned to live with but not pleasant , losing my sense of smell ( well before covid) and constantly blowing my nose as I have an overpruduction of mucus, is embarrasing and wearing. If this would have been dealt with straight away I am sure my chest wouldnt have become so bad. This why you cant afford to leave things. Good luck and take care and dont give up x