I've had bronchiectasis for over 30 years

@dogtag I’ve just come across this thread and found some invaluable ideas thank you to you and every other responder. I’m intrigued as to whether you have other symptoms such as daily chronic joint and muscle pain, chills, fevers, fatigue, weight loss and brain fog. Continual coughing and lung pain is bad enough but to endure all the other symptoms together is debilitating. I have a secondary autoimmune disorder called sarcoidosis which perhaps is the instigator of all other symptoms. After 30 years I have relented and agreed to take 10 mil daily of prednisolone which has helped the joint pain tremendously. At this stage of my life at 67 I’ve had to take long term leave from work bc frankly my inflammation markers sit at 181.1 daily which renders me useless. This still happens where there is no lung infection. I found mullein tea really helps and manual drainage positions invaluable too. However I don’t have the strength to exercise or live like a ‘normal’ person doing daily chores and living life to the fullest. I refuse daily antibiotics because I fear of developing resistance. I’m frankly a little angry at the health industry especially hospitals I’ve frequent bc everything I know now is due to my own research. I needed to take my life back into my hands so that I can start living again. I worked out cold drinks, ice is a no no I take VitD C B6&12 liquid iron magnesium Glysinate. I drink mullein tea daily and make myself a tepid watermelon orange ginger apple cayenne pepper. I’m down to 55 kilos and trying to bring up my weight by snacking in decent food every 3 hours regardless of no hunger. Did you suffer the same symptoms as me and if so how do you deal with them? TIA

@tasha777
What is the issue with cold drinks and ice? Curious.

@irenea8
Wondering too, as I am constantly needing to drink cold water.

@tasha777 Welcome to Mayo Connect. To be able to answer your questions, we need a bit more information. You have sarcoidosis, and also bronchiectasis, correct? The fevers and chills you describe, as well as many of the other symptoms, are typical of someone who has an infection like mycobacteria avium complex (MAC, also know as NTM non-tubercular mycobacteria) or pseudomonas.

I understand your concern"...I refuse daily antibiotics because I fear of developing resistance..." However, sometimes it is necessary to use specific antibiotics to treat opportunistic infections that arise from our diseases. NTM & Pseudomonas infections do not show up in routine blood tests, sputum samples must be taken, and specially cultured in a lab for up to six weeks to determine what you have, and the best course of treatment.

Have you had sputum cultures done recently? This is especially important if you are on long-term steroid therapy, which suppresses your immune system and makes you more vulnerable to infection.

Also, if you have bronchiectasis, do you have a pulmonologist familiar with treating it?

@sueinmn Thankyou for your early response. I’ve only ever had one sputum culture done in the past and they found Moraxella which I was treated for. I have multiple CT scans and X-rays per year to determine infection. Even with no infections I still get chills almost on a daily basis, feeling frosty on the inside, shakes and general malady so I use a heated blanket to keep myself warm. And break that cycle. The difference is the fevers. If I have one I start the antibiotics regime asap.
I am currently being treated by a heart and lung specialist who put me onto daily prednisolone which has limited the joint and muscle pain. I resisted this regime for years cause I researched long term use of this drug and was appalled by the side effects however the quality of my life got the better of me.
I was seeing a pulmonologist some 20 years ago but found I was getting nowhere. I’ll have to revisit this issue. I will ask for a sputum test next time I have a fever? When is the best time to have this test?

@irenea8 for me it instigates the coughing and chills. In Chinese medicine they say cold water is not good for your general health. Anything colder than your blood temperature is discouraged.
Phlegm and Mucus: The spleen is responsible for fluid metabolism. When weakened by cold, it fails to process fluids properly, leading to the accumulation of mucus and respiratory issues.
If I have room temp water let alone fridge temp it will start my coughing.

Wow. Sorry you have been burdened with this for so long. I, myself, just developed BE 18 months ago, and I'm 80 years old now. I feel very lucky, actually. I don't see where you mention you are on an airway clearance procedure each day, such as nebulizing or Brinsupri, or the Breztri inhaler. Unless I mis-read, you only discuss exercise and diet. Are you nebulizing at all each day? I have to do so twice a day plus the other things I mention above.

@nygirl4159 thank you for responding. The answer is no I’ve never been given the option of a nebuliser or Breztri. I will ask when I see my respiratory team at the hospital next week. I rely on mullein tinture and drainage posture positions to thin the sputum for me to be able to cough it up. I hope you continue to manage your BE. At times it can be very debilitating

It’s so inspiring to listen to your story. I wish you more strength to keep on going because you seem to be doing a great job. Did you do anything along the lines of airway clearance, nebulisers, Mucinex or any of the traditional western medicine approaches? My mum has bronchitis and she suffers with significant cough episodes which hinder her ability to sleep. Do you have any suggestions for this at all? She also suffers from breathlessness. I wonder if you have experienced this at all.

My I ask you:
I have suffer Bronchiec and Broncholitys for over 5 years, I could not handle inhaler neither other traditional meds, so free of them.
I handle my lung deceases, with many chinese herbs, plus herbals teas os mullein, thyme, greek oregano whatever reduces bacterial grows in me.
I have to use a lot of humidifiers at home in Western Australia, because I come from a tropical country.
My question is this, I am planning to go my native country, but people from western countries and use inhaler in forums said that tropical humid weather is bad for you, also I will have to travel 14 hours by plane. I am worried if I will survive this ordeal and if I would suffer more in tropical weather.
Please I would much apreciate your anwer.
Many thanks