Hi everyone, I am 31 and was diagnosed with bronchiectasis in august 2012. It followed a 2 year period of having chest infections that wouldn't quite go away. At first they thought it was asthma but after trying inhalers and peak flow tests it showed that was not the case. I then had spirometery tests done and a ct scan which showed bronchiectasis. I saw the consultant once and was discharged. I then proceeded to get chest infections again and was sent back to the consultant (I have a different consultant this time round). I saw him at Christmas and he recommended physio and to see an ENT specialist. Since the middle of february I have had 4 chest infections, all of which have been Haemophilus Influenzae. I get an infection, have 2 weeks of amoxicillin (500 3 x a day) and then about 12 days after finishing the antibiotics I start to go down hill again. The first 3 infections my syptoms stopped after a week or so, i stopped coughing and no mucus was coming up at all. The most recent infection (still H.I) has been different. I had a really sore throat and very runny nose (not had this before with previous infections) to begin with then the thick sticky green mucus started (apologies for the detail!). By then end of 2 weeks of amoxicillin the colour had changed to a light yellow but it was still there, 3- 4 times a day where as previously the mucus would stop completely and only come back 12 days later when I went down hill again. So now i'm about 10 days post amoxicillin and it's starting all over again, mucus is now more green and thicker and when I cough I have an unpleasant taste. I handed in a sputum sample yesterday and I doubt i'll hear back until after the bank holiday.
I just really do not know what to do now. I saw the ENT specialist who is doing a scan of my sinuses but he didn't think there was a problem with my nose/throat but would do the scan just to rule that out. I don't see my consultant until June and I am really worried about what is going on and if my bronchiectasis is getting worse as 4 infections (possibly 5 if I have one now) since february isn't very good. I worry about what damage is being done. I am assuming that the results of the sputum sample will come back with H.I again. I had a telephone conversation with my consultant and he suggested a different antibiotic if it came back. I just wanted to know if anyone else suffers with H.I and how you get rid of it? In terms of my bronchiectasis I do daily physio and that's it. I take antibiotics when I get an infection only. I really need some help as it just doesn't seem to go away, it seems that the amoxicillin just isn't strong enough to get rid of it for good. I am just so desperate to feel well again, I have 2 children 7 and 5 and I just want to get on top of this illness. I've checked out BRUS and most people seem to get to a point where they are fairly stable with this condition but i'm just not getting there and I'm really worried any help is gratefully recieved. Thank you and sorry for the long post!
Written by
hollybobs
To view profiles and participate in discussions please or .
The ability to reply to this post has been turned off.
36 Replies
•
Hi Holly, I'm no expert but I've had bronchiectasis for many years. From what you describe it seems obvious that you need a stronger antibiotic and possibly for a longer period. You haven't had bronchiectasis for that long and your lungs probably aren't damaged too badly so hopefully once you get the right medication, you will begin to feel much better.
It sounds as though you might need IV antibiotics to get rid of the bug. Can I suggest that you call the BLF helpline (click on the red balloon ) and talk to one of the specialist nurses. They can tell you what you need to do and to say to your doctors to get help.
I have very unstable bronchiectasis but finally it has been realised I have an immune system but it doesn't work! I'm just waiting to start immunoglobulin therapy to see if that makes a difference.
That's interesting Judith - just answered hollybobs in the question section. Going to see immunologist tomorrow. Had IVs last July - hurrah dampened down the HI for 3 months but as I am odd with drugs gave me GI problems for months grrrrr.
Thank you everyone for your replies, you have all been really helpful. I'm going back to the GP tonight so I'll mention all the things you have all said and hope we will get somewhere this time.
Hi Holly, I also got bronchiectasis and airways inflections for more than two years. I need to take Fluimucil A600 every morning and Mucoflux cap twice a day to thin the mucus. I also blow acapella before chest PT daily to make the mucus a bit easy to get out. Another important thing is to do physical exercise daily. So, I spend a lot of time and effort to live with the condition. My respiratory specialist said I need to continue to do the above things daily for the rest of my life. My mucus was tested every four months. After they discovered bacterial, they did drug sensitivity test. Unfortunately, even I took about 1000mg of antibiotics for one and a half year, the bacterial are still there and those antibiotics became less effective. As antibiotics could not kill the bacterial, I can only clear the mucus everyday so there will not be too much bacterial grow in the mucus.
Also sputum tests would be favoured to show exactly which bug causes the green stuff. In this way, the right antibiotic can target the bug. Ask your Consultant, because Amoxycillin is only a first line fo drug. I'm burnt out on this drug, it doesn't work at all. As others say, Intravenous antibiotics, stronger and directly poured into the vein can do the trick well.
i had a new system, a PICC (peripherally inserted central catheters) put in my arm and attached to a bottle hanging over my neck. I had this for a fortnight at home and the bug went. I was monitored by the new Hospital to Home team who changed the bottle every day. Hope you get the help you need.
Hi All just had my daily read of questions, and realise that I have been put on the back burner re my bronchiectasis. I have MS and have had repeated chest infections for many years before being diagnosed 5yrs ago.
I have been fairly stable apart from one collapse last year which put me in hospital for a short while, I found the whole process very confusing but was assured by the fact I had 4to 6 monthly app with Consultant, that was until this year when I was referred to respiratory nurses I have tried phoning them but get through to answer phone and they do not get back to you, I feel quite alone and feel I am missing out on new resorces and medication.
This is totally unacceptable inhaler. You should be monitored by a respiratory consultant with a special interest in cf/bronchiectasis. Are the nurses specialist cf nurses, 'cos there are only about 4 specialist bronchiectasis nurses in the whole of the UK. In any event I don't suppose it matters since they do not get back to you anyway.
If it were me hun I would ask GP to refer me to a respiratory consultant with a special interest in bronchiectasis. If you pm me the name of a city you have access to, I may be able to find you an adult cf centre and consultants and you can ask your GP to refer to them.
Sounds like you are being short changed and deserve much better.
Hello c I always love reading your replies to folk on here. It always seem sound and reassuring, also very helpful. Could I bother you to please also inbox me re consultants that are worth visiting in my area. It's Very near Preston Lancs where I live. Thank you x
I have all my papers out ready to phone appointments after the holiday. What I don't want is to have to phone when I am ill having a relapse of my MS or lung prob.
I manage my symptoms myself by starting steroids when sputum changes or very breathless but am really in the dark and considering I used to be a Nurse looking after others I now find I have no one to look out for me, my Husband s great but has no medical knowledge .
I will get in touch with the professionals to try to get something in place.
You can check out what consultants at your local hospital have a special interest in or check them out on Dr. Foster. Best to know who you want before you ask for referral. Maybe your MS consultant and respiratory consultant could liaise as you have complex issues to cope with. cx
I am exactly the same. Recently diagnosed with bronchiectasis after several chest infections which turned out (after sputum tests) to be caused by haemophilus influenza. It's a bugger of a bug and Like you I get about 10 days clear and then it all starts again. I cannot count how many infections this bug has given me. However, my consultant believe it or not (and backed up by my GP) said he doesn't see any reason to clear my lungs of it!!!!!! have you ever heard such nonsense. I am considering asking for a second opinion. Can anyone suggest anywhere? love fleur x
I have just been told by my immunologist he doesn't think I will ever get rid of the HI which I am colonised with, but my consultant is doing his very best, along with microbiology to keep it under control (next step nebbed tobra). I am just wondering just how much your consultant has done to try and eradicate the HI. Again I would stress what a difference it makes to get a consultant who specialises in cf/bronchiectasis. Again if you pm me with a city you have access to I may be able to find a cf unit for you and cf consultant.
With regard to your 5 day course of antibiotics. Clearly your GP has very little knowledge, if any, of the BTS guidelines for non cf bronchiectasis. Take a look at page i5 with regard to recommendations with regard to antibiotics in bronchiectasis. 5 days - you may as well use them as a suppository!!!!!!
I would be very greatful if you could supply the same for me on cf/bronchiectasis., you may be able to find a cf unit for me and cf consultant. I live in Kent
The immunologist was excellent flib and is doing some tests, although going through everything he feels it is not my immune system. As I thought HIB is out 'cos it's for type B (the type for kids to prevent meningitis) and the respiratory is non type, which I had read up on in any event, so no surprise there. Said he would use it if nec (I think if checks show I have no antibodies for type B) ((you know how difficult it is to take everything in at consultation)). Askd about the pertussis in it and he said there wasn't - it has been taken out and is not a live vaccine. Learnt something new - there are two vacs for 2 different strains of pneumonia and he is checking me out for antibodies for both.
Anyway apologies to hollybobs for highjacking - will chat about it to you later flib. Sorry for delay in replying - had birthday celebrations with spiking temp. Actually it was lovely - think we just get used to feeling crap or missing out!. Speak soon.
So I saw the GP last friday. He said that after my 3rd lot of amoxicillin I should have been moved on to something else. He has put me on 200mg of cefixime twice a day for two weeks. I asked about going to the RBH and he said that it was down to my current consultant to make that referral. He said that GP's can't really step on their toes and that it should come from the hospital. The problem is I don't see the consultant until 17th June. We spoke to consultants secretary yesterday who was taken aback when we asked if he would refer me on to the RBH. She went away for ages then came back and said what were we hoping to gain out of moving to which we just said that it was a specialist hospital, leaders in their field with someone who was specialised in my condition. She said that the consultant would review my notes and either she would let me know before my appointment or it would be something we discussed at my next appointment. From my point of view i'm worried that waiting 5-6 weeks will be more harmful to me but I just don't seem to be in a position to do any more. This is so frustrating and 6 days in to my antibiotics things don't really seem to be changing. I still bring stuff up about 4 -5 times a day and although it's changing colour it's still really sticky and quite lumpy which i'd have thought would have got better now. I just don't know what to do x
I would start a new thread if I were you as this thread is 7 days old and folks probably don't trawl through pages - you will get more responses that way. Hope to get back to you later hun as I am just off to melanoma clinic.
Hello there! I noticed you have not updated recently on your status/diagnosis. I was searching the internet for articles etc & stumbled across you!
I have been sick for 3 yrs. Chronic cough & lung infections. Treated over & over w antibiotics/steroids. Tried inhalers, etc. To no avail. Initially it was thought maybe it was bronchiectasis. On CT it appeared maybe so(?) Then I finally had a high resolution image CT 64 slice. It was then decided Bronch was not my problem. They did, however, see spots "nodules" on nt lungs. So I underwent a bronchoscopy. That's when they found H flu. I was treated azithromycin for 70 days (yes, you read that correctly 2mos!!) w/steroid. I felt, eh, a little better... maybe. Soon as I came off it. Sick again. As you said, copious thick thick sticky tacky GREEN. They tried 2 other abx's. Still sick. Cough is endless. Next culture grew MRSA- methicillin resistant staph aureus. Imagine that! After 70 days I was resistant to it!!!
On a side note: in the past 2 yrs, had sinus surgery to correct post nasal drip. Plus, I was allergy tested and I am now on allergy shots. I use allergy meds daily, use neti pot to clean out sinuses. Nasal sprays. They look great! No issue's, no drainage. NOTHING!
So, I have seen numerous lung docs. Now they are doing another bronchoscopy. I had it Monday. still waiting on all the pathologies and cultures to come back.
Just curious if you actually battled this and won?????
I realize this was written a few years ago- so maybe you don't even need to check anymore.
I had really bad bacterial pneumonia that showed that bugger HI. Just wondering did any antibiotic work out for you? At this moment my lungs seem a bit clearer but i think it's moved to my sinuses. I've never had lung probs before, just in the process of getting diagnosed. I just feel if i got rid of this HIof my issues would be under control a bit more. Still producing the thick green stuff 8 weeks after the pneumonia.
Did you ever get rid of it? Or are you controlling it?
I too have two kids 7 and 9 and am just so fed up of it.
It drags you down..but you will get a bit better soon.you have children that need you..so the strenght comes from determination to fight the illness ...Carol moran....Rachel.........have hope.
Hi. Just joined and have had same problem I have been given LEVOFLOXACIN 500mg daily for 7 days Within 24hrs noticed a significant improvement Really works against HIB chest infections I have bronchiectasis and chronic lymphocyte leukemia so have weakened immune system
New research is taking place carolann & hopefully new nebulised antibiotics will be available over the next 5yrs. Type EMBARC into the search box & you'll see previous posts on this.
Don't worry for long posts you are obviously very stressed and that doesn't help people like us !! I was diagnosed 3 years ago and have suffered eith infections. However took measures in hand to work on prevention strengthen and management as there is no cure . I joined a choir now do an hour cardio work out and Pilates twice a week to expand airways and precise thoracic breathing it really has helped lung capacity you must keep them moving. It's also fun to meet other people and have fun. You have a lo ng time to live with the problem please don't let it beat you . Yoy will gave flare ups but yiu will be fitter to cope with them. I am 68 and have had it since l was ten. Also don't eat processed food lots of veg and fruit ! Good luck
Hi - sorry to hear you have been through this. It sounds all to familiar with me. Post H1N1 influenza 2009 - I was treated as if i had asthma, had surgery on my sinus area, was treated with puffers of varying types etc etc . Eventually was told i have mild bronchiectasis and adult aquired tracheomalacia. The only antibiotic that is quickly effective for me is ciproxin - its a strong antibiotic and you can have this for flare ups 3-4 per year if needed according to 3 respiratory specialists that i have seen [I live in Australia]. Good luck. ELAINE
Im sorry to hear your case. Basically I heard that HIB is pretty muh antibiotic resistent and they don't respeond the fistline antibiotics anymore. Most consultantnst at NHS are useless in my opinion as they are not well informed and updated with ongoing research data out there. So still they use guideline medicine which is a malpractice and do not work for some patients with antibiotic resistent strains. My best suggestion is you will have teach to your consultant to look for best antibiotic combinations of 2nd or 3rd line version if available to kill this bug completely.Its pretty much like now turinging into antibiotics resystens strains of TB related cases..Otherwise these people will waste you in doing the same-book based testing and not using their head to find out better combinatorial therapy for you. I assume Amoxiciliin+ ciprox may work well ?
The ability to reply to this post has been turned off.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
any help is gratefully recieved. Thank you and sorry for the long post! 
xx
Bronchiectasis and Working 
Bronchiectasis consultation
