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Do you need to sanitize your toothbrush every day?
MAC & Bronchiectasis | Last Active: Jun 5 10:15am | Replies (77)Comment receiving replies
I just joined group about three months ago and I have not seen her tell people not to take antibiotics. She warns about getting sputum test to identify pathogen and to then do susceptibility testing before taking antibiotics. Is this not reasonable? She may have changed since you were there and I am so sorry people have gotten hurt by following something she said.
I am part of several groups and have gotten a lot of value from Lung Matters though I test all recommendations through my own experience of my disease profile and use only what actually works in my case. No one should follow anyone blindly. Lung Matters has done a lot of hard work to help others and that is commendable. Take what makes sense and test it against your own experience and what you see and hear on reputable forums like this, NTMir and Bronch350.
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Yes, Lung Matters has a number of good tips about dealing with bronchiectasis. They are a proponent of airway clearance, which is the cornerstone of bronchiectasis treatment. In that way, they've done a tremendous service to the suffers of this disease. Leaving a sputum before abx treatment is also sound advice.
The rest of the "protocol" might be good in theory. You know what is said about theory: "In theory, there is no difference between theory and practice. In practice, there is." There's an authoritarian air to the advice. If you don't follow these exactly you are doomed type of attitude. Things are not black and white but lungs matters would want you to believe and behave otherwise. If your post is the least bit controversial or contrary to their teachings it will be deleted and sometimes the user banned. A hostile environment is not what a bronchiectasis sufferer needs.