Bronchiectasis Foundation

Hello to all

Hi everyone. Was just diagnosed late last year, and still trying to learn as much as I can about this illness. I am a trained nurse but had never heard of bronchiectasis. My GP, unfortunately, seems to have little experience in this field. So, I feel a bit lost, but glad to have found this site and community. Currently I am starting my 7th consecutive course of Doxycycline to treat a chest infection (exacerbation) that I've had for last 9 weeks. Last year a similar infection lasted 6 months. My question is/are; is this standard for the illness? And, does anyone have tips or ideas of what I could be doing to limit the duration of infections. I do not smoke, eat a balanced, plant-based diet, drink lots of water, and get exercise in the form of walking. I must say, I am encouraged to read of other members exercise regimes. ☺

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I had a series of exacerbations 12 months ago over a 6 months period. In the end my GP ran full blood tests and referred me back to the consultant, I was low of folate and iron ~ a 3 month course to resolve that helped enormously.

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Now that's interesting Elaine. It's been a long time since I had a full blood workup. I think I'll ask for one. And if everything is fine at least I know my starting point..........on my track to fitness. 😵

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Hi Tam, I was also fairly recently diagnosed with Bronchiectasis. I found it very interesting to read the British Thoracic Society's guidelines. (2010) new guidelines are being published this Autumn. If you read the guidelines, and the NICE guidelines, you will see that Doxycyline is the "go to" antibiotic. However, it also states very clearly that if infections don't clear then there should be sputum tests. You should also have been referred to a Respiratory Physiotherapist. Which happened to me as soon as I was diagnosed. You have to learn how to clear mucus from your lungs. There are also some great video's on youtube about how to do active cycle breathing and mucus clearing techniques.

You should also try and get referred to a Bronchiectasis specialist, not all respiratory consultants are equal! This is known as orphan disease for good reason.

I was actually prescribed Azithromycin to take 3 times a week for anti-inflammatory and Prophylactic purposes. However, I also have quite bad asthma, so I have a fairly complicated drug regimen which may be very different to other peoples.

Hope this is slightly helpful

R

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Hi Risabel. Thanks for your reply. I will check out these guidelines. Good to know my GP is on the right track with the Abx. I've done four sputum tests in last couple of months, all positive for haemophylus influenzae. A Respiratory Physiotherapist has never been mentioned, but I did, last night, look up Active Cycle Breathing on youtube. I was amazed at how effective it was, so definitely something to add to my arsenal, and I will ask for referral to physio.

My GP has suggested that I consider IV antibiotics, then long-term, low dose Abx for prophylactic use. I am just so fearful of developing antibiotic resistance. I think when I get rid of this current infection I will try to be more vigilant about keeping my distance from people who obviously have resp. bugs. I think fresh air in wide open spaces is the way to go. I am fortunate to live by the sea, where the air is always fresh and clean.

Thanks for your great advice. I'm so glad to have found other people who can share their knowledge. Tam

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I also get prescribed co-moxiclave or azythromicine! Works every time! Several times the doctors have diagnosed my with asthma but have then later found it to just be the bronchiectasis playing up in different areas of my lungs, they just called these flare ups and would give me the blue inhalers until it passes!

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Hey Tam :)

I, like you, get really frequent and severe infections. I was diagnosed with bronchiectasis last December and have had bronchitis 5 times and laryngitis 4 times this year alone. I also feel quite lost, as it seems that none of the doctors I have seen here (I live in South Africa) know enough to give me any advice past just telling me what I am suffering from. I would also love to know whether such frequent infections are the norm here, or whether I should be pursuing any other causes of these infections. I am so scared that I am doing further damage to my lungs every time I get ill. My ENT did suggest that I may have Primary Ciliary Dyskinesia, but does not want to pursue a diagnosis as he says it is a very expensive procedure and, as there is no cure, he feels it would be a waste of time even if I did get a diagnosis.

I also follow a very healthy lifestyle (non-smoker, non-drinker, very little processed food, vegetarian) and find myself almost getting angry when I am always sick yet people who follow an unhealthy lifestyle do not get sick nearly as often as me!

As far as exercise goes, I do horse-riding but really struggle with the dust. I have ridden since I was three though (I am now 26), and am just not willing to give it up! I just have to be careful about not pushing it when I am unwell. I have tried jogging, to try to strengthen my lungs, but I find the motion causes me to start choking on mucus so I get grossed out and stop! I did recently speak to a personal trainer about how I can maintain my fitness, and she said under no circumstances should I do any form of exercise when I am sick. I found this to be quite a depressing answer! She was possibly being a bit dramatic though...hopefully :/

Good luck with figuring out more about this disease and fitting your lifestyle around it.

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Hi Lau, yep, "lost" sums up how I feel too. I have found far more information online than my GP or consultant have provided. I know it sounds selfish, but thank goodness for fellow sufferers and their willingness to share their knowledge and experience.

I too worry that infections are doing further damage to my lungs, and can not understand why my bugs (haemophylis influenzae) will not respond to antibiotics. I have always been acutely aware of the health consequences of repeated, and sometimes unnecessary antibiotics, and now I find myself taking them like smarties! I wonder if nebulized antibiotics might be a better way to treat an infection as the drugs are then directed at the bugs, instead of the whole digestive system being exposed to them. Does anyone have experience of this way?

I agree the exercise aspect is frustrating. I know I need to rest during an exacerbation, but when infections last for weeks or months I then find that the lack of exercise causes my mood to plummet.

Oh dear, I'm in danger of moaning. Lol. As you say, it's a case of fitting your lifestyle around the illness.

Take care, Gill

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Hey Tam!

I'm sorry you're feeling as lost as me :( with regards to antibiotics, my GP eventually told me he is no longer giving me antibiotics when it is "just" bronchitis and laryngitis 😝 so now I just call him for a sick note if I really need it and try sleep it off (it does take way longer to clear up, but even with antibiotics it would come back as soon as I finished the course, so at least now I'm not an antibiotic junkie!)

On the plus side with regards to exercise, I bit the bullet today and joined the gym and itwent really well! I'm not sure what the machine is called, but you have a platform for each foot and you walk/run on it? I found that the bouncing motion really helped to clear my chest without me getting completely knackered like with jogging! Maybe you could give it a go?

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I find that little to no dairy makes a change as well as staying out of sudden temperature changes! Not wearing jumpers too thick or getting too cold as I find my self getting sick after that! Being that I am in school becoming sick is always happening so as you are a nurse you may find that micro-bugs people have your are more likely to get chest infections from them even if they never had one ( hope that make sense )

Ask your GP/Consultant for a respiratory physiotherapy device called an accapella, I find this to help brilliantly to clear mucus and make my chest feel lighter! If they won't reactive you one then I would defiantly ask for physio as it works wonders!

Hope this helps and I have had mine since I was a baby and I am now 16 so I believe I am getting quite good at finding ways around the constant antibiotics and hospital trips! 😂

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Many thanks for your reply song lover. So much good advice. I agree about dairy. I have avoided it for many years. Nowadays it is so much easier to do without dairy as there are so many great alternatives. I particularly like oat milk. Over the last few years I've realised that my temperature regulation system is pretty ineffective, and getting too cold is easy and results in hours of feeling dreadful. Hot drinks work better than hot water bottles for warming up, I find.

I don't work anymore and actually have very little contact (except fleetingly) with people. It's usually out in the fresh sea air that I meet peeps, and still manage to catch their bugs. Peeps around here like to share!

I will definitely talk to my GP about physio, and also mention the accapella device.

Many thanks for your great advice. It's such a help for someone who's newly diagnosed to be able to connect with someone like yourself.

Thanks for sharing, and stay well. Gill

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This is actually new to me as I have never met anyone who has this disease and it's interesting how they are treated by their GP's! Keep in touch and if you have any questions about anything please ask and I will be happy to answer! Starting to consider my self a pro at all things bronchiectasis 😂

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Hello everybody, I'm new to this forum, but have had brochiectasis for 40 years now! Your experience with chest infections seems sadly all too familiar to me. Some go quickly, but others last for months. Knowing the correct antibiotic seems like guesswork. However, on the exercise front, I've kept hillwalking, which I would recommend, as nobody as ever told me to stop. The other thing I was able to do in year 1, was to move from a damp climate (Nottingham) to a colder but drier climate (Edinburgh). I know not everyone can make that sort of move, but in the absence of effective treatments, perhaps a shorter distance move could be beneficial to some people?

I'm waiting for a delivery of an upgraded nebuliser, which I am only going to use for saline solution twice daily. Once get my new regime up and running, I hope to post my experiences on here next month.

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Hi Arthur, it's heartening to hear of your hillwalking. Walking in the fresh air by the sea or in the countryside is important to me too. I'm fortunate to enjoy good sea air, winds and, of course, cold weather, just across the coast from you in Fife. If I have a brisk walk of two to three miles in the sea air, followed by a hot shower, then lie down for thirty minutes, I can then clear my lungs well.

I have been reading all the info I can find online re. bronchiectasis, clinical trials, studies, guidelines etc. I find it difficult to deal with when I am not in control of my health, and dislike handing over control and leaving decisions to my GP. My health, my responsibility. So I like to be as informed as I can be, and take measures to manage my symptoms when possible. But these flare-ups (infections) are hard to tackle. I spoke to my local pharmacist about nebulising antibiotics instead of taking them orally, since I'm not happy about repeatedly exposing my whole body to the side effects, but he said that it's not something that's customarily done by the NHS!

I will be really interested to hear how you get on nebulising saline solution. The studies I have read point to improved mucous clearance, which would be great. I know you can buy hypersonic and isotonic saline solution, but I believe you can also make your own solution with sea salt and filtered water, although I'm unsure of the quantities. Can I ask which you plan to use?

Gill

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Thanks for your encouraging words. I'm only on day 3 of my planned new regimen. I am making up my own 7% saline solution with low-sodium salt. 4ml max is my aim. I was on a clinical trail some years ago which included nebulising saline, and throughout that trail it felt easier to breathe, which meant I could get to sleep easier, and be more relaxed in company. So even if I am only tackling the phlegm in my throat and upper lungs, I feel a lot better, which makes the exercise well worth it.

I think I know why the NHS is not keen to prescribe nebulisers for all bronchiectasis patients. I think too many would regard the nebuliser as a replacement for breathing exercises rather than an adjunct. So they could spend a lot of money to make some people worse!

Hope to get back to weekly hillwalking, once all these Edinburgh festivals have ended soon.

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Interesting to see moving from a damp climate to a cool dry climate has helped, I've noticed this in myself that I am so much better in a dry climate and the cooler the better since I'm always too hot and can't' control my body temp. Wondering just how much town/city pollution impacts this disease in the longer term, there's clearly an effect in the immediate exposure.

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