Bronchiectasis & chronic chest infections

[Lexilou70]

Hi. Just found this thread & am finding it very interesting. I've had 10 courses of antibiotics in 14 months and still have my chest infection. I'm at my wits end. I have thr drs again Monday. I am always given a week's course of either Amoxicillin or Doxycycline. Does anyone know if I need a longer course to get on top of it. I have no life as I am always poorly. Thank you in advance of any replies. x

[RoadRunner44]

Hello, I have bronchiectasis and have doxycycline as a recue pack in case of a flare up and Its always for 14 days My consultant has always said we need a 14 day course of antibiotics for a bronchiectasis exacerbation. If you are not under the care of a consultant and you keep on getting these regular infections I think you should ask your doctor for a referral to a bronchiectasis specialist. Good luck and keep us posted as to how you get on.

[Lexilou70 in reply to RoadRunner44]

Thanks so so much. I was only diagnosed in July after demanding a CT scan. I can now go armed to my new GP on Monday xx

[cofdrop-UK]

I echo our Road Runner’s comments. It sounds to me your GP hasn’t got a handle on bronchiectasis. The guidelines state a sputum sample should be given but that a high dose of abs should be commenced for 14 days straight away. These can then be changed if the results show the bacteria are sensitive to a different antibiotic. You would think the penny would have dropped with him/her that 10 courses in 14 months @ 7 day courses with no improvement, they need to change tac or request specialist advice.

Agree too with RR re referral to a bronch specialist. If it were me I would check out online at a hospital in a large city you have access to (these are more likely to have specialist centres) and check out a consultant with a special Interest in cf/pcd/bronchiectasis. Contact them and inform them you note they soecialise in your condition and would they consider accepting you as a patient. If yes, then ask your gp to refer. Once under specialist care you will hopefully have an improved QOL.

Good luck cxx

[Mrbojangles in reply to cofdrop-UK]

Once again an example of how General our GP’s are!Some are loathed to admit they don’t know the answers and to them gaining a second opinion is pride damaging.

Forget pride and refer to the specialists i say!

[Lexilou70 in reply to cofdrop-UK]

Thank you so much for your reply x

[ck101]

Some of these GP’s think they are consultants. One told me at a visit that he had given me the same advice as a consultant would have which would have cost €250!

[cofdrop-UK in reply to ck101]

He’s arrogant and deluded xx

[Hidden]

Cofdrop UK said it all. Your GP is way out of their depth. Bronchiectasis is a complex condition and can only be handled properly by a bronch expert who will tell your GP which antibiotics to prescribe for you or even treat you directly from the hospital. Don't accept no for an answer when you request a referral to a specialist.Don't forget that it is CRUCIAL that you empty your lungs of as much mucus as possible every day, whether you are unwell or not. This is the only way that you will deprive the bugs of a warm wet pool in which to breed and reduce the number of infection exacerbations.

[Lexilou70 in reply to Hidden]

Thank you so much for your reply x

[Patk1]

Id reiterate all the above.yo clear mucous from lungs - read up on active cycle of breathin+ huffing techniqueTake a fresh specimen to drs with u.do try to protect yrself from covid,colds and flu as bugs drop into lungs + cause bacterial infections,which cause more damage.xx

[Lexilou70 in reply to Patk1]

Thank you x

[carolgardner]

I agree with everyone, I was diagnosed 6 years ago and went straight to a lung clinic and have a smashing Consultant I have a nurse too who I can call on at any time, GPs have no idea about this lung condition so don’t know how to treat it, I hope that you get sorted soon. Carol

[Lexilou70 in reply to carolgardner]

Thank you. After hearing all your responses I'm so frustrated! Will be pushing for a referral tomorrow.

[helenlw7]

I have bronchiecstasis and was having one chest infection after another until my favourite lung man prescribed antibiotics as a prophylactic, firstly doxycycline but that didn’t really stop them, then azithromycin which I take 3 times a week. I’ve only had one chest infection since I started these about 5 years ago and that was when the said lung man advised me to stop taking azithromycin between May and September because ‘people don’t get chest infections in the summer!’ Needless to say I got the worse chest infection ever! I’ve been on them continuously and I’ve not had an infection since.

[Lexilou70 in reply to helenlw7]

Oh no, hope you are well now. Thank you so much x

[helenlw7 in reply to Lexilou70]

My breathing is the best it’s been for a long time, although I am on 4 inhalers.

[Hidden]

Is that your kitty in the pic then?

It has similar markings to our ginger tabby Babys mate Percy who has a white bib and socks and they are the same age as well 17!

[Lexilou70 in reply to Hidden]

Hi. Yep thats Rolly. He's half Maine Coon & is the most amazing cat. He thinks he's a dog & actually has a sense of humour. He's huge! x

[Hidden in reply to Lexilou70]

Is he spoilt as Baby is!

[MoyB]

I was in a similar position to you before I was diagnosed with COPD, Asthma and Bronchiectasis. The infections kept coming. I kept swallowing a week's worth of antibiotics. The infections came back. etc etc etc.

I was so unwell that I asked the GP to refer me to a specialist. He said it would be a long wait. So I asked for a private referral. He said, 'Yes, that's what I would do if it was me.'

Two weeks later I saw the consultant. He recommended a CT scan. I told him my first appointment was covered by Simply Health insurance, but nothing beyond that and no money there for scans etc. He said, 'I'll transfer you onto my NHS list then, and I'll get your

CT scan done asap - which he did.

With the Bronchiectasis diagnosis came instructions to the GP to ALWAYS prescribe two weeks of antibiotics. The 'go to' antibiotics are Amoxicycline, Doxycycline and Clarithromicin. I am unable to take Azithromycin so I take Doxy. through the winter - from November to April.

I agree with others that, like the doctor I had at the time, your GP doesn't have a handle on your condition. I would push as hard as you can to be seen by a specialist or ask for a private referral if you have the funds for it.

I am sure that you could feel better than you do now with the correct treatment. Good luck!

xx Moy

[Lexilou70 in reply to MoyB]

I've had to ask for every xray/ct scan. My lump is 6.5mm and is being scanned again March. If I hadn't have asked for CT scan I wouldn't have known. The 1st scan didn't show bronchiectasis but the 2nd did! So I think it's the GPs fault for not treating all my infections properly. I'm not leaving the drs room tomorrow until she's done everything I ask for! I hope you are keeping well x

[MoyB in reply to Lexilou70]

They found a 6mm nodule in my lung last year and my consultant said they only follow up anything over 7mm (I've checked this out and he is not fibbing!) but I asked, 'How will we know when it gets to 7mm if it's not ever going to be checked out?' He said that there is a greater risk from the radiation when having repeated CT scans than there is in waiting as the nodule is unlikely to grow that much in 4 years and so it would be picked up on my next CT scan. I wasn't best pleased with the answer but am not sure that I can argue with him. I'm interested that they are scanning you again - maybe because you are .5mm closer to the 7mm? What part of the country do you live in?xx Moy

[Lexilou70 in reply to MoyB]

Hi. My report stated initially a 3 month follow up and now its a 6 month follow. The report said this was as per the BTS guidelines. I just looked at them online & it says offer CT surveillance for nodules >5 - <8mm. I'm in East Anglia. I think it depends on the radiologist/doctor. xx

[MoyB in reply to Lexilou70]

Now that's interesting as the stuff I read said only nodules over 7mm to be followed up. I wonder if there's new guidance - I must have a look! Lucky you to be getting the scan. I wish I was. It's surprising how the different areas work, considering it's all under the NHS.My husband has just had a pacemaker implanted at Eastbourne hospital. When they did the MRSA test they asked him to swab his armpit.

On Friday we went to the Royal Sussex hospital in Brighton where he will be having his heart valve replaced. They did the MRSA test by making him swab his groin. I commented on the difference and the nurse said she would follow it up as she had never heard of the arm pit being swabbed.

Ah well, they like to keep us guessing about things, I suppose.

Take care and keep as well as you can. xx Moy

[Hidden in reply to MoyB]

Thing is when they shove antibiotics down you without investigating it's like putting a plaster on a deep wound.

[MoyB in reply to Hidden]

I know what you're saying, but if they don't give enough antibiotics to zap the bugs we are worse off, aren't we? If we do a sputum sample at the same time they can soon tell us whether or not we are on the right meds or if we need to stop them. Just how I see it - others will have different opinions, I'm sure. xx Moy

[Kristicats]

Have you sent any sputum samples in. They are needed to see what bugs your lungs are growing therefore the correct antibiotics prescribed. Two weeks abs should be px prescribed for bronchiectasis .