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Tue, Mar 17 8:38am · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Hi everyone! I have looked back through the last couple pages of this post but didn't see much relating to the Corona Virus. Can you all tell me what special things you are doing:

1). What are the best masks to buy?
2). I thought I saw a long time ago someone suggested to buy like "an air filter necklace" that they used on the plane, but it seems it could be helpful right now more than the plane.

Thank you for your help if you can.
Amy

Oct 22, 2019 · Starting Arikayce - nervous in MAC & Bronchiectasis

Hi everyone. I have been on the Big 3 antibiotics for 3 years. Does anyone know what would happen if you stop the antibiotics all together and eat right and exercise? Do you think it can stay under control?

Oct 22, 2019 · I was recently diagnosed with Bronchiectasis. in MAC & Bronchiectasis

Hi everyone. Does anyone know what happens if you go off the antibiotics all together? I have been on antibiotics for 3 years and still have MAI. With diet and exercise do you think it could stay under control? Has anyone heard of anyone doing this? Thank you!

Sep 3, 2019 · Starting Arikayce - nervous in MAC & Bronchiectasis

To everyone: What do you all know about the effectiveness rate of Arikayce? I thought in the video it mentioned 30% conversion rate. However, my doctor told me 60%. Has anyone heard any updated information, or what understanding do you all have about the effectiveness rate? Thanks for your help.

Sep 3, 2019 · Starting Arikayce - nervous in MAC & Bronchiectasis

@angiejohnson…1). So, do you expect to be on Arikayce your whole life? I am 48. I've been on big 3 for a little over 2.5 years. I am hoping Arikayce is going to help me get rid of this. 2). Are you still taking the other two regimens from the Big 3 besides Rifampin? Thank you for your help.

Sep 3, 2019 · Starting Arikayce - nervous in MAC & Bronchiectasis

Thank you @rits for your detailed update. It sounds like you are doing well killing your bacteria…you must be SO happy!! Keep us posted. 🙂

Sep 3, 2019 · Starting Arikayce - nervous in MAC & Bronchiectasis

@angiejohnson Hi. I was wondering two things: 1). Have you lost your voice the whole time, or has it come back? 2). Has the Arikayce not worked yet to kill your bacteria? Is your doctor hopeful that it will. I was told in 3 months the infection could be gone…I don't know if this is overly hopeful. Thanks for your help if would reply back. And, I hope your infection goes away soon if it hasn't already!

Aug 23, 2019 · Starting Arikayce - nervous in MAC & Bronchiectasis

@heathert, did you have any side effects from being on the Big 3 for 3 years? Thanks!