Newbie!: Hi there everyone, I was... - British Lung Foun...

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Newbie!

Jools7770
Jools7770

Hi there everyone, I was diagnosed with Bronchiectasis July 2018 and was jus fine eating healthily and exercising until I caught something on a flight in October and since I honestly don’t think I have felt well. If I exercise I ache all over with a flurry feeling (not doms!) and have had so many antibiotics I am not happy! I want to eat well to live well. What do you guys think about plant based diet? Oregano oil? Garlic? Any ideas that can help? I am off to Royal Brompton Tuesday as I haven’t yet seen a bronc. Specialist. Fingers crossed! I look forward to hearing from you x

12 Replies
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Hi, I've heard from others that oregano oil is useful.

It's great that you will see a specialist and the Brompton is one of the best for lung issues so I think you'll be in good hands.

Write down all your questions and how you feel etc before you go an take that with you as it's very easy to forget things in the moment, I've done that so many times!

And take a notepad and pen with you so you can take notes.

Good luck I'm sure after the appointment you'll have a far clearer picture of things.

Oh and Manuka honey, very good for the winter months!

Hi, Jools7770 and welcome. All the best for your appointment tomorrow, Do let us know how you get on.

Jools7770
Jools7770 in reply to Ergendl

Thank you for you best wishes 🙏🏻 I am grateful to have found people to chat to! I will let you know what Professor Loebinger says 👌👍🙏🏻

cofdrop-UK
cofdrop-UK in reply to Jools7770

You have got a good consultant there jools. Check out Patient Priorities Bronchiectasis, (which I had the good fortune to be involved with as one of the volunteers in the patient advisory group) click on bronchiectasis top left and scroll down to Videos (advanced technical). Your consultants interview is about the 5th one.

You will find the BTS guidelines and the ERS guidelines are very similar as many of the same consultants worked on both.

europeanlunginfo.org/bronch...

Cx

Jools7770
Jools7770 in reply to cofdrop-UK

I can’t find the videos cofdrop 🙄

cofdrop-UK
cofdrop-UK in reply to Jools7770

They are at the bottom of the page which comes up with the link. Hope you find it ok.

Cx

Hi Jools7770 and welcome to the site, there are plenty of us on here with bronchiectasis. I was fine until December 2017 and caught a bad cold, since then I havent been right and no amount of medicine seems to help. I am waiting a sinus op as it turns they have been infected for a good part of last year. I have a very good diet and keep away from processed foods. I eat plenty of garlic, ginger and turmeric. I use a good greek oregano oil and take vit c, d , k2 mk7. I also take mucodyne and use seretide inhaler along with omerprazole. I think you will have a better idea of your condition when you see your specialist. Have a look back on previous posts that contain the word bronchiectasis, you will learn alot. Irene x

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Hi Jools

Welcome to the bronch club. i am one of those who has been living very well with this condition since I was 3. 65 years. You are in very good hands. Your consultant is joint chairman of the committee which wrote the latest guidelines for bronch. The other is my consultant here in Birmingham. Listen to what he says. Get a plan for your ongoing treatment and management. This will mean recognising when an exacerbation is coming on and the type of antibiotic treatment you will have. The MOST important thing that we can do for ourselves is daily lung clearance. Hopefully you will see the department physio to learn how to do this. There is a set way but you will eventually adapt it to yourself and also figure out the best times of day to do it so as to fit it around your activities. This is crucial because you need to get rid of the warm fluid in your lungs which is where the bacteria love to party. It is AS important as antibiotic therapy. Keeping active and doing whatever form of exercise suits you best also helps to get rid of everything.

As far as diet and supplements are concerned - a lot is written about it. I don’t think that any of it makes much difference but if a person feels a benefit, why not? Eating well is always good for us lungies.

The only thing that did make a terrific difference to my susceptibility to viruses and the almost inevitable following exacerbations is Vit D 3. For some reason, people with lung conditions do not seem able to make vit D in the sunshine or take it from their food. There has been no research on this but there is so much anecdotal ecidence from patients with lung conditions of the benefits of taking vit D 3 that there must be something in it.

Good luck with your appointment. Get him to explain anything that is puzzling you and make sure that he always sends a copy of your follow up letter to you Also make sure that your GP knows that you are seeing the expert, reads the letters and cooperates with his instructions!

Onwards and upwards from now on!

Hi and welcome. Hope your appointment goes well. I started taking vitamin D3 and B complex and eat more healthily. I also find that moderate exercise helps- no overdoing it! When I tried to go back to my gym I found I kept getting ill again I changed to fostairnexthaler last year and that has been a great help as it has finer particles that reach to the depths of the lungs. X there’s great advice on this forum from people with lots of experience of the condition. I’ve listened to them and benefited

Hi Jools. Best of luck today! x

Thank you - it’s tomorrow 🙄👌🤣

Hi Jools, quite new to the site myself was diagnosed probably 2 years ago now but have been struggling for the last 6years or so and was initially treated for asthma which I probably have as well. I have trouble with frequent exacberations and have had 8 courses of AB and pred in the last 12 months. Just started pulmonary rehab, will see if that helps at all. Let us know how you go, Take care 😀

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