Anyone with bronchiectasis?

I found I was allergic to house dust mite, after allergy tests from the respirologist. I was up coughing all night. I removed all the carpet in my bedroom, wash sheets( organic) twice a week, wash floor daily. Changed my mattress. I also wash duvets and pillow twice a month, and only use allergy resistant ones. All time consuming and fiddly, but my cough has completely gone, after having it and tests for years.

I find this post interesting as I was diagnosed with bronchiecstatis 5 years ago following a long lasting ‘coughing virus’ which ending up with one episode when I coughed up what seemed at the time quite a lot of blood. After tests bronchiecstatis was the diagnosis.
I was given breathing exercises but no medication, was told I needed 10 day’s antibiotics should I get a chest infection in the future.
Luckily that cough cleared up about a year after the diagnosis. I had another virus with persistent cough in February 2023 and had several appointments with the GP but on each occasion they said my chest was perfectly clear listening on a stethoscope so they wouldn’t prescribe antibiotics. Instead they either prescribed nothing or on the last occasion prescribed a steroid nasal spray, antihistamines etc which did nothing. On that occasion I was also sent for a chest X-ray ……… which showed up an infection on one lung so was finally prescribed antibiotics. A follow up X-ray was clear and the cough went after lasting 9 months.
I don’t think my GPs (never see the same one twice) seem to treat this diagnosis with any seriousness at all ?

Hello, after having a CT scan, I was also diagnosed with Bx (thanks for this shorthand, much easier!) last summer. I had a constant cough with greeney/brown phlegm that I just couldn’t shift for about 6 months. I was told that my Bx was mild, affecting one main tube to one lung and a few smaller areas in both lungs. The consultant prescribed antibiotics and explained that whenever I started producing coloured mucus I should take 14 days (v important) of antibiotics and that I would be given an emergency pack to cover these instances. Presumably due to my ‘good health and lung function🙄’ I wasn’t told about any exercises or equipment that would help, but he did mention an online website that I duly registered with and then completely forgot about!

On the whole I still feel healthy, but am very prone to picking up infections and as such have needed antibiotics three times so far. I now only cough when I’ve caught something and have managed to catch one cold without it getting to my lungs - a very small result!

I’m hoping I’ll be able to control this horrible thing - I do Pilates, a Yoga/Ballet combo class most weeks, plus a few walks. I’ve started using Dual Defence nose spray from Boots at the first sign of anything, as it says it helps stop colds/flue like symptoms, so worth a try! I also take a daily Vitamin C effervescent tablet if I start feeling coldy. If I do start to produce coloured phlegm I have to take a sample to my Drs so that they can send it away for testing, then if it’s positive I then take my emergency pack. This seems to work well, however I’m a bit concerned about taking so many antibiotics when the general advice is to take less!

Thanks Liz46, I will definitely google NTM and thanks everyone else for all the advice, I will now also look into chest clearing exercises.

Good luck Mizuna and thanks for starting this topic xx

Thanks Mizuna for starting this subject. I've lived with Bx for about 20 years now. It seems to have got worse in the last year so I'm really interested in all the posts here

The prohyllactic antiobiotics, which I take three times a week have made a dramatic difference in reducing chest infections over the years.
Since I am immunocompromised they also play a role in keeping other infections at bay.

For those who are concerned about taking antibiotics, the ones I take are low dosage.
In circumstances like this, you have to way up the pros and cons.

I have had Bx all my life (75 this week) but diagnosed as asthma or bronchitis when I was young. Coughing all the time and lots of excess mucus. All I can say is basic antihistamines are good for easing nighttime coughing.

Hi, forgive me for jumping in a post about Bx but hope I can be helpful. My husband had IPF so lung scarring and mucus. He was recommended Fisherman's Friends to reduce mucus congestion by his consultant and our daughter found they worked so well when she struggled with mucus with Covid.
He always had a rescue packet of Doxycycline antibiotics to start immediately he had a chest infection.
May I suggest singing? We have a Singing for Lung Health group here which teaches breathing exercises and singing for anyone with a lung condition. It has been fantastic and helped him so much, both mentally and physically. Any singing for fun group would be helpful and worthy trying.

My father was diagnosed with Aspergillosis after using spent mushroom compost when gardening. He also developed emphysema not connected with the compost. Be careful with bags of compost and dampness in houses. Those spores are dangerous to lungs.

My good friend had a Bx diagnosis after a referral to the respiratory clinic by a locum GP after many years of being pooh poohed by the regular GP. She now takes an antibiotic 3 days a week between Sept and May. And her constant violent cough has disappeared.

Mizuna, a very helpful thread, thank you for posting. I too have Bx and emphysema. Lots of helpful information from everyone.

Nannan2

Do get the doctor to also check for adult onset asthma. I think that lots of us struggle on and think we don’t want to bother anyone but no need to be shy. Get your bloods done and an X-ray plus Spirometry. If there’s a wait for any of the apppointments, be clear that you will happily have a cancellation even at short notice.

With my newly prescribed inhalers I now have an extra 19% of oxygen in my body which helps enormously!

🌷🌷🌷

Thank you for all your input. Bx seems to vary such a lot that I'm not surprised it's overlooked or goes undiagnosed. Your various stories and experiences are fascinating and I'm learning so much from them.

I was diagnosed with Bx about 8 years ago after being hospitalised a couple of times with chest infections. Mine came about as a result of having TB at some point in my life and the residual scarring then caused Bx. I never knew I’d had TB. I’m on carbocisteine with azithromycin 3 times a week. I also use a nebuliser which I received from the hospital, when I have a chest infection. I’ve for some reason never been able to cough any phlegm up.

I’m unfortunately also immunosuppresed due to the number of doses of steroids I’ve been prescribed when I’ve had chest infections.

My consultant also “banned” me from swimming as he said the warm damp atmosphere was a breeding ground for infections.

Apart from being a breathless at times I keep reasonably well.

Vitamin D is a must all year round.

You can get more info. from the British Lung Foundation (it’s got a new name which I can’t remember!).

I was diagnosed with adult asthma and small airways disease last year - since then I continued to have endless chest infections plus hacking cough with copious amounts of mucus and an ever growing box of inhalers, pills and lozenges, but nothing seemed to help.
In desperation I was on the Internet looking for miracle "natural" cures (as you do!!) when I saw this advert about a small porcelain SALT PIPE, containing totally natural salt crystals, from an ancient salt mines in Eastern Europe .
Personally I rinse my mouth out and gargle regularly with salted water already, so the salt advert caught my eye!!. It arrived in 2 days!
By putting the small china salt pipe to your mouth and breathing in normally, the salted air gently passes through your airways. Breathing out through your nose - just as if you were sitting by the seaside on a breezy day!!! By the end of the first day of use, my coughing was considerably better and felt drier. One week later my coughing has finally stopped and the mucus has ceased and dried up - so I am no longer using the salt pipe regularly but working towards getting life back on track again! - My friends and family can hardly believe the transformation!!!!!! Hopefully it may help others too, to feel more comfortable. This is simply my personal experience . Please check the use of a salt pipe with your doctor before use.

I have seen adverts for salt pipes. Has anyone else used one?
Salty sea air has always been good for chest infections.

TB hospitals often were at the seaside with open windows to the sea air. The Seabathing Hospital in Margate...now luxury flats... was almost on the beach. I must read its history

I suffer from sinusitis on top of everything else and years ago, while in Berlin, I suffered a bout along with an asthma flare up.
I was recommended a salt, nasal spray in a pharmacy. Amazingly it helped.
So HelterSkelter, you are not wrong in thinking salt has a beneficial effect.

We have a family nebuliser. Often, my son and I were advised to have saline only, minus the Ventolin in it to help alleviate asthma symptoms.
There is definitely a benefit in using saline.

This has been such an interesting and informative thread to read - thanks Mixuna!

I think so many of us have had the ‘winter cough’ (? 100 days) I’ll bet I’m not the only one who has been reading with interest.

My cough started on 3 January. I was given a 7 day course of Ampicillin to ‘clear it’ and sent for a chest x-ray as the doctor could hear crackles in my left lung. The x-ray was normal thankfully but the cough worsened with sticky green phlegm (apologies if you are eating your breakfast) so more antibiotics were prescribed. Erythromycin this time for 7 days.

I thought it had begun to clear but then I had pain on my right side of ribs whilst breathing in. I could hardly get my arm in the sleeve of my coat to walk to the doctors again. I was only able to shallow breath. The doctor listened to my chest and told me I had crepitations in the right lung and said I had developed pleurisy. Ouch! Strong painkillers to enable the pain to subside so I could take deeper breaths (and yawn again!) plus a laxative to cover expected side effects of the tablets.

The cough still hasn’t really gone away but it’s much less than it was.

This morning about 6am I was woken by a squeaking sound. Took me a moment to realise it was coming from me! Each expiration made the same squeaky sound. I was lying on my back so I turned on my side and went back to sleep.

However if this continues I think I may need to chat again with my GP. Armed with the knowledge I’ve gained on here! She is fast becoming my new BF. when I left the surgery with my pleurisy diagnosis she helped me into my coat and just said “would you like a hug?”. I cried, she was so kind, of course knowing everything that’s happening at home.

Anyway I just wanted to say how much I appreciate everyone’s posts on this thread it has really opened my eyes about lung function.

After having. CT scan for an entirely unrelated condition, I was told that I had bx. I’d never heard of it. I don’t cough, suffer with my chest or from breathlessness, and have not suffered with asthma since I was twelve. It seems it doesn’t need treating, but I now worry that it will rear its ugly head at some point. If I had been left in blissful ignorance, I wouldn’t have given it a thought!

Greyduster 😁

Urmstongran 'This morning about 6am I was woken by a squeaking sound. Took me a moment to realise it was coming from me! Each expiration made the same squeaky sound. I was lying on my back so I turned on my side and went back to sleep.'

The paramedic at the weekend said to me, 'You sound like you've got an entire orchestra in your lungs.' 😄

Not sure I deserve any thanks for starting the thread; I only asked a question. But I'm in awe of how it's developed and how obviously helpful it is to so many of us. And I hadn't even heard of bx a week ago!

55Mizuna I have this and I was advised by Consultant to wear a FFP3 mask when I'm working in my garden..the usual paper masks don't work properly as the spores can get through. X

Thank you NannyCl, I've yet to return to my allotment but will bear that in mind.

Urmstongran, it sounds as though you have a lovely GP. I was amazed when I was able to see one last May. After being on vast quantities of AB for Mycobacterium Intracellulare, I didn’t want to take any more unless I really had to. I had a very bad reaction to the tree pollen but didn’t want to start on my rescue pack of doxycycline.
I sent a Patchs asking for advice and received a message telling me to go in. She checked my lungs, BP etc. and said that, if I used my rescue pack, to replace it straight away.
I haven’t had any AB for my lungs for 5 years now.
Our surgery is pretty bad. We just see nurses if we are lucky enough to get through.

I emailed our surgery for a repeat prescription of Carbocisteine. Had a message back to say a doctor would ring me. He was amazing, gave me so much time and obviously understood bronchiectasis, talked it through thoroughly. I dared to ask if it would impact on my long-awaited knee replacement operation in June and he said it's down to the anaesthetist, of course. I've found a lung health forum on which plenty of people have had the same/similar op, with a spinal block which is what I would go for. Some were given large doses of antibiotics to support lung function after the op. I'm desperate to get off crutches as I'm into my third year on them.

Mizuna, I had a spinal block for my hysterectomy, a general anaesthetic is not an option for me.

However, be aware, the anaesthetist told me, as he was administering it, that he might change his mind at the last minute. It all depended on my vitals.
🤞 for you.

Ah, thanks Marydoll, that's very helpful. To be honest they can do whatever they want with me as long as the op doesn't get delayed again!