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Posts (174)

May 15, 2019 · Best Shower heads for MAC in MAC & Bronchiectasis

@kathyhg Here is the list of sample questions to ask your doctor. https://www.ntminfo.org/questions-to-ask-your-doctor/

May 15, 2019 · Best Shower heads for MAC in MAC & Bronchiectasis

Check out this website: https://www.aboutntm.com/ It might help. I am also looking for a website where they give you questions to ask your doctor. I know there is one but cannot remember where. I've been off meds and MAC free for 2 years now so it was a while ago but I definitely remember the confused and scared feelings!

May 15, 2019 · Best Shower heads for MAC in MAC & Bronchiectasis

@kathyhg @sueinmn Here's what I found and I'm not quite sure what to make of it. "It will be difficult to establish markers that predict the optimal duration of antimycobacterial therapy in a disease in which relapse-free cure may not be the best variable to define treatment success and cure is not even defined. In many patients with NTM pulmonary disease, classical outcome definition of relapse-free cure is not achievable, either because eradication of mycobacteria is not possible or because recolonization will occur." Source: https://www.atsjournals.org/doi/full/10.1164/rccm.201507-1392LE

May 15, 2019 · Best Shower heads for MAC in MAC & Bronchiectasis

@kathyhg The normal protocol is 3 negative cultures then continue meds for one year from 1st negative culture. Does that make sense?

May 15, 2019 · Best Shower heads for MAC in MAC & Bronchiectasis

@sueinmn Late reply. "once your lungs are colonized with MAC, it is not totally eradicated by treatment – just knocked down to undetectable numbers". Interesting. I've read quite a few studies but haven't seen this. I am going to look further into it. I agree with just living life and not worrying about the source of MAC/NTM. It is everywhere in the environment and my specialist said I would need to live in a bubble in order to avoid it. I've been off meds and MAC free (or perhaps MAC undetectable?) for over 2 years so far!

Mar 3, 2019 · Are Nebulized saline and Aerobika beneficial? in MAC & Bronchiectasis

@elainet Good for you! I am not good about using my nebulizer daily since it seems to bring up nothing unless I am sick (that's usually when I use it). I've been MAC free for two years and also have bronchiectasis. I have had pneumonia twice and a few bouts of bronchitis caught from the germy grandchildren. Will be going in for a bronchoscopy soon since my latest CT scan showed some consolidation. Crossing fingers it is negative! Also, I am going to try to use my nebulizer daily even if it doesn't seem to do anything.

Aug 21, 2018 · Possibility of resolution of mild bronchiectasis in MAC & Bronchiectasis

I found this most interesting!

“Earlier diagnosis of even mild disease will also change the outcomes, including the possibility of complete resolution. The definition of bronchiectasis may also need revision as the disease may not be permanent in all cases. With these changes, research needs to be encouraged and this frustrating disease should not be orphan any more.”


Apr 23, 2018 · Symptoms? in MAC & Bronchiectasis

@lauriefrancis Oh, that's rough! So sorry your mom is going through this. What do the doctors say? The wheezing and shortness of breath could be caused by the MAC or bronchiectasis. How do her lungs look in the CT scan? I've not heard of headaches or the other issues with MAC but maybe someone else will chime in here. @windwalker can you help?