I have Bronchiectasis. I cough all day & expel thick green mucous. Today, again I was refused antibiotics by my French GP, citing I did not have all the symptoms of an exacerbation, temperature, difficulty breathing, plus he could not hear crackling in my lungs. He said coughing was normal, take honey & a nasal spray. He & another GP tell me that if I take too many antibiotics, then when I really need them, they will not work.
A Bronchiectasis specialist recommended co-amoxiclav as a therapy which I have taken in the past and successfully gave me respite for 6 weeks.
My question is whether there is a definitive definition of an Exacerbation & whether others have been refused antibiotics.
My thoughts were to take co-amoxiclav when cough is worse until the drug no longer helps. Any thoughts very welcome.
Thank you
Written by
Breester
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Oh dear, how my heart sinks when I read posts like yours. It is incredible that in 2020 there is still such dire ignorance about bronchiectasis amongst most GPs and many general respiratory consultants. I, and quite a few others on this site are lifelong bronchs. In my case diagnosed at 3 and now aged 70. Together we can tell you that your GP is so wrong. He is confusing this chronic, progressive and very complex condition with chest infections in the normally well population.
Also, the story of getting used to antibiotics is tosh when applied to bronchiectasis, for which they are essential in large doses for extended periods.
You do not need a fever to be having an exacerbation with bronchiectasis, crackling is sometimes heard and sometimes not. Thick green mucus and the cough which means that there is a considerable amount in there are the signs that an exacerbation is present and needs treating as soon as possible.
To suggest honey and nasal spray is frankly laughable.
To withold antibiotics is a dereliction of the duty of care towards you and next to criminal in my opinion.
You need to find a bronchiectasis specialist as soon as you can. Only they have the training and sufficient experience in dealing with the condition. I don’t know the referral system in France but you need to do it now. In the UK they also instruct the GP how to treat you and which antibiotics to give you.
Not a general respiratory consultant because they tend to treat it like copd and it is very different.
The specialist will decide which antibiotic to be used as a first go to when there is an exacerbation. He or she should insist that you have a supply of the right antibiotic in the correct dose and course to start as soon as you feel an exacerbation coming on.
There are many antibiotics and co-amoxiclav may not be the right one for you which is why the green mucus keeps coming back.
You also need advice on daily self management of the condition, how to empty your lungs every day to get rid of the fluid in which the bacteria grow, etc. The specialist should have a physiotherapist to help you.
To be at the mercy of this ignorant GP can only result in your going down the spiral of infection until you get really sick.
I’m afraid that with bronchiectasis we have to be very proactive in our own interests and vociferous in sourcing the right treatment.
Stick up for yourself.
Good luck.
I see that you say that your consultant is a bronch specialist. You need to get in contact with them through their secretary, tell them the problem and get them to sort the GP out.
Thank you so much for your reply. Before writing here, I sent an email to the specialist as you suggested.
Sometimes I lose heart and wonder if I’m even going mad for asking when time & again, antibiotics have been refused. I wonder if in my own country, I would be more proactive. My intention now is to return to the GP this week to insist on help and a referral.
Your first reply reinforces my view that the locum I saw today, is out of his depth. Your support is invaluable to me. GA
Not necessarily for everyone. Many people with BE never have clear sputum. We are all different. I understand docs always about the colour but it matters what is normal and abnormal for the patient concerned.
i was interested because i spent a good part of my working life reading the sputum culture plates every day. we cultured onto basic blood agar and the onto a medium with lysed blood which grew the more exacting organisms such as Haemophilus and that was incubated for 2 days .but rarely more. as the sputum was digested and diluted only organisms in large numbers should grow and rarely encountered
ps.aeruginosa . it' s can be present in small numbers as a contaminant in badly taken specimens. All sorts of bugs lurk in the mouth .
s
So were we wrong in not routinely incubating longer?. We were based on site and the only delay came from local GP surgeries.This was 30 yrs ago and things change but we never looked specificallywith selective medium for Pseudomonas then. I do not know what they do now.
Me neither. I only know it appears to take longer to come back in primary care if cf protocol is asked for.
I thought as you have worked in microbiology you might be interested in this link and understand it much more than I ever could. I thought it interesting re speed of samples to culture and room temperature/refrigeration (deterioration of some bacteria).
I saw your mini convo and sent Jaybird the standards along with the Health protection agency general standards for sputum analysis via a DM earlier this afternoon. Interestingly, the cf lab recommendations don’t always exceed the timescales set out for other respiratory cases (in the HPA guidelines, which are referred to in the BTS guidance under microbiology, non cf bronch patients are actually included with cf patients in relation to how sputum samples should be tested, so the standard for both should be exactly the same as long as the form identifies the patient has ncfb), but generally speaking, our experience is that many centres with experience of cf do culture samples beyond the guidelines. We had a sample ultimately positive for pseudo pending on the system for 10 days whilst inpatient before coming back, and we’ve been told pending usually means it’s still being cooked, rather than there being an issue with identification/speciation as has also happened a couple of times: if they’re struggling to identify beyond genus, the system says some version of ‘bacteria family x, species pending’ if/until they know what’s what. Under normal circumstances and regardless of which hospital of the 3 we’ve used, I’d expect a result for standard bacteria back one way or another within a week. If we haven’t had anything by day 5, that’s usually a solid indicator it’ll be coming back positive for something - only once have I ever seen it take longer than 5 days but come back clear. The reason I use 5 days as the cut off is because that’s the longest processing time on a sputum sample and therefore the first point at which you can get a definitive all clear on the bog standard bacteria. RBH run fungal for 4 weeks as standard, though, and on all samples submitted, so you’re never really in the clear until that’s back, and can tack on another 6 to 8 weeks if it’s also gone for AFB looking for myco!
Thank you for that Charlie. Re NCFBE and CF samples I think the emphasis here is on the ‘should’ be the same. I feel it largely depends on the lab concerned. I always preferred to fill in my own micro forms so that BE was emphasised. The docs do it now. As you say they sometimes want to check for fungal.
thank you so much for the standards leaflet . I downloaded it but I have only scanned it so fa, as my keyboard went awol and wouldn't work at all . It has been cutting out every few words or so and then went off completely . leaving me with two sick devices I tried to order a new keyboard from argos who said were not delivering but had a" way of dealing with people like me ( being shielded)" took all my details and said some one would call me back within 5 Days Tthey didn't . so ignoring their new system . so I am still out a fully functioning keyboard It is not ideal but works with patience
I must remember that medical advances have been made since I left work ! so I will try to stop living in the past and your download will be a start . I feel that we didn't do a good job then and really I don't know how the lab has coped with all the changes . But we were always having changes in methods which we coped with. But then 20 years is a very long time and means many changes . So I will try to stop thinking about what we did routinely !
Littlepom’s post is spot on. The only thing I would add is that as LP has stated not every exacerbation presents with a temperature. When I grow HI, strep p, amongst others I can have a very high temp. However when I grow pseudomonas, which takes longer to grow in the lab, I don’t have a high temperature at all. The antibiotic is dependant upon how sensitive the bacteria is to it and a good guide, although it is only a guide, are the results which come back from the lab from a sample.
Here’s a link which will give you an idea of what you should expect from a proactive clinician.
As to refusal, yes it has happened, usually if you get a GP who is ignorant to BE. That’s where the experience of being a diplomatic, knowledgeable patient about your own condition comes into its own! I once saw a locum and he gave me a prescription for Amoxil 250mg 3 times a day for 5 days. Difficult because you want him onside but you know he’s out of his depth. I explained that as he knew the guidelines stated 14 days high dose abs for bronchiectasis. Well he couldn’t say he didn’t know and so prescribed correctly. It was only when I received the prescription in my hand that I told him I might as well have used the 250s as suppositories for all the good they would have done. Luckily we were on good terms by then and he laughed.
Good luck with training these docs or finding others who know what they are talking about and are proactive. You only get one go at this, so don’t put up with being short changed.
Thank you cofdrop. I’m thinking to print out the French notes & take them to my next appointment. Your response helps me to be braver and tackle self-doubt.
Looks like you have been given good advice Breester, its not easy tackling your gp but they can be so wrong sometimes, as Cof says be diplomatic. My old doctor insisted I had asthma and treated me for years with meds that made me worse and would never give me anitibiotics until I was gasping. You must put your own health at the top and get them to listen. Good luck x
Agree entirely with Littlepom and Cofdrop's comments.
I would add that personally I wait for say 3 flags of infection before reacting with visits to the doctor or self-administering 'rescue antibiotics'.
In way more than half of the cases where I have felt some early warning signs of infection they go away again within a couple of days - presumably dealt with by my immune system (even though I'm told I have secondary immunodeficiency it still seems to work pretty efficiently to me!)
Typically my flags of infection are feeling unwell, drop in motivation/energy levels, sputum colour (beyond light buff or light green), increased sputum volume, breathing restriction, wheezing/crackling, increased coughing, headache, chest pain, blood in the sputum, temperature/fever, night or day sweats. I would react immediately to the chest pain flag (maybe wait a day, unless unusual location or intensity) and I would react immediately to a showing of blood that was more significant than the mere blobs I have very occasionally experienced.
It takes a bit of experience though before one feels confident to effectively 'ignore the signs for another day' and I sort of learned how to get the balance right with a couple of errors in the earlier days - ie I regretted at the time not having reached for the antibis - but in the long run it was a useful 'learning the boundaries' for my own body experience.
Best of luck - once your general pulmomologist or general practitioner admits that you know more about your disease than she/he does you'll know you've done a good job!
Hi, i have Broncactasis too the physio at BRI gave me an AerobiKA to use to help the muck to come up. First i use my ventolin then nebulizer with saline through it followed by my AerobiKA, its very good at getting the muck up also with the saline it lubricates everything and makes you cough less. Hope this helps you.
Sorry new to this but I cough all day , worst in the morning, cough up mucus mostly clear, been on going for at least three years now, just wondering about anything that might help but dont know what an Aerobika is ?
Hi Fruitcake, I'm in the same boat as you. except my cough is 2 weeks on and 2 weeks off. I cough for 2 weeks straight then it stops for 2 weeks straight then it starts again for 2 weeks and so on. I have boderline coped. Peppy05
Thank you for your response. I have tried an oscillating/flutter device, which never seems to help. Mostly after drinking & eating which seems to agitate an already sensitive throat because of continual coughing & expelling, do I cough the most.
It is a viscous cycle. Thinking AB + huffing will break the cycle.
I’ve just read the above and it is all very good advice. I have bronch but have had 18 months without infection which is amazing. I see a bronch specialist at the Brompton and always carry doxycycline to take with feeling unwell and mucus colour change. The consultant had to write a firm letter to the GP advising that I take in a sputum sample whenever I felt the need. My temperature often drops to as low as 35. 2 when I'm getting an infection So a high temp not always an indicator. A good specialist is essential.
Interesting, so glad to read your post. I have Bronch. and never have a temperature over 35.3, i seem to produce little mucus no matter how I proceed, but have chest pains, back pain, and a pain on one side by my ribs.I have had pneumonia, and am often breathless. I also have asthma. I attended pulmonary rehabilitation and enjoyed this, but had to stop as the physio conducting the beep tests noticed my feet were turning abnormally.
I have had my 6 month review with my respiratory consultant by phone and my GP surgery is close to all but e-consult so feeling a bit alone at the moment in shielding.
I was glad to read your post and that of Pjmf. I think we are classed as having untypical bronchiectasis. but I do have my doubts sometimes. see my post to Pjmf
it gets a bit lonely shielding doesn't it ? I welcome the weekly supermarket man with open arms ------ well as open as you can be 2m apart !
I know what you mean, i have a waitrose priority slot and last week Quentin delivered, very nice! I had the last of my meds delivery this week, my local cycle club have carried out this task and were so pleasant, i shall miss them, have been passed to NHS responders now. They phoned to say firmly that all requests must be done by my surgery and not myself, i replied ‘ good luck, i have not managed to get through to them since March!’
it is surprising the people who offer help. i live in a group of 11 houses and nobody offered until the neighbour who lives furthest away heard me clapping for the nhs and came to ask if I needed anything. he did shopping for his parents his wife parents and then me too while their delivery grocery order has been with Sainsburys for years. his wife was still working but he was furloughed so they went shopping for three households . now they are both working and I get Sainsburys and that is with priority and usually find a slot somewhere.I am lucky to do that. I think I had a sympathetic Gp. Don't get a regular GP anymore . and don't know most of them . didn't know this one I spoke to.
good luck with your shopping. have you heard of Mutual aidcountrywide volunteer groups . they could help you if you cannot get Nhs volunteers
we are all different i think I was told I had bronchiectasis when my consultant retired/ I get the crackles but I rarely get infections. my temp like yours is lower and my normal is also always lower at 36.4 or less . ( these do vary from people to people I believe by about I degree) mt sterioid inhaler keeps mucous down. when my inhaler stopped working despite saying there was 40 inhalation left. I had stickier mucus ,a constant cough and then purulent sputum I. thought about antibiotic but left it and changed inhale.r No mucous ,and better after 24 hrs. I I had lung abscess 30 yrs ago thought to be due to due to inhaling dust from demolition of building next to place of work, and 2 PE since.
I have never been refused antibiotics. I also am given steroids when my sputum is green. If it isn't dealt with you could end up with pneumonia. You need a second opinion, and l can guess you feel pretty rough. If necessary go to A&E. I feel quite worried about you.
Good luck, and hope you feel better soon. Gillypotter x
If you need anti bio tics a sputum sample would tell he doctor if you need them. Have you tried that? A nebuliser might help. A one cord chest expander might assist to loosen the mucus.
I am sorry, you've been refused antibiotics. It seems that is happening all around the world. The W.H.O. needs more sick people for the pandemic to be believable, (they are the world dictator now) and anyone with lungs problems is written as covid case, but that will be a "conspiracy theory" for many people here. You have to find another GP, and ask for the prescription, they can assess what strength of the antibiotic you need, after you tell them how it worked in the past and for how long. Keep trying. Don't go to hospitals. People have been put into an induced coma and then on ventilators. Those vents have more than 90% mortality rate. Wish you good luck!
Thank you for this. Think I need to take an interpreter to consultation to get across how the recommended therapy worked for me. Sadly my French falters in nitty gritty detail.
Hi, I live in France and am under the care of a pulmonary specialist as opposed to my GP (who is very good). Specialists must know better so maybe try and get a referral.
Yes this is my way forward. The specialist in Toulouse has perfect English. Covid has reduced their consultation availability I understand. But in the end I will get there. Pity though doctor 5 minutes away with no waiting times is unhelpful.
Totally agree with Littlepom. He has summed up the issue brilliantly. If you live in France, is it not easier than here in England to "shop around" for a GP? And also, do you necessarily have to be referred to a consultant by a GP, or is this not your choice and your decision? Bon courage.
Yes you can shop around. The route to specialist is more & more preferred though by referral from your GP. The service is excellent for the majority as you probably know. My GP is a very thorough professional with a blind spot. My hope is to work with her.
Difficult.. Not even concensus here. I usually wait a day or two to see how I feel, & will have a simple blood test to show if CRP is raised as well as submitting a sputum sample. The respiratory consultant suggested the blood test, as often my sputum test is negative. Hope you get sorted soon!
The only problem with CRP for me is that the inflammation shown could be from my lungs, arthritis or both and Breester could encounter the same problem, having PMR. Agree though in general a useful guide.
Absolutely terrible situation but great advise given by members. I am lucky that I have a fantastic specialist and GP's that although didn't know a great deal about the condition listen to my specialist and most importantly listen to me. We know when we have a chest infection or and exacerbation and we know that all the symptoms are not always the same. Be forceful and confident when next speaking to your GP and I hope you are successful and you feel better soon.
My wife's BE was discovered by a CT scan the results of which she was advised to take immediately to her GP. Fortunately there was a locum in that day and his comment was "how was this ever missed?". The answer was that her GP simply did not recognize BE, and had let her have severe chest infections for years. Clearly there is a lack of awareness and the patient must push for second opinions.
After reading all the above, I now feel an exact definition does not matter. I cough uncontrollably & expel. I found a therapy (an AB), recommended by a Bronch specialist that worked and my coughing stops for a few weeks. This is a huge physical relief for me, and my OH who has to watch & listen.
My takeaway is to be more proactive & stay closer to the specialist and ‘educate’ an other wise very efficient GP.
I used a teaspoon of menthol rub in a big bowl half filled with bowling water.
Put my head over the top and a towel over my head and the bowl deep breath in through the mouth and out the nose so no mucus is inhaled from the nose. You will cough and splutter but this clears me..
Antibiotics knock my system for six bloody things..
I have also changed sugar for honey in my drinks..
As a kid i had asthma i beat it.
For lung capacity excercise take as deep of a breath as possible slowly hold for 10 and breath out fast.. do this and hold your breath for longer periods..
I can swim 2 lengths under water in a swimming pool..
Mutley69 what lung condition do you have now ? swimming 2 lengths under water would be very good for a normal healthy person let alone someone with lung desease, hence my question.
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