← Return to Options if MAC goes untreated
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MAC & Bronchiectasis | Last Active: 5 days ago | Replies (96)
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Replies to "Do you happen to know where you read that? I always try to make certain I..."
@cwal I went through my stack and located the study, it is one of the foundational studies supporting and cited in the 2020 NTM Guidelines. My memory was more conservative than the actual study results, which note that 51.6% of those stable for 3 years achieved spontaneous clearance. I highly recommend that everyone read the 2020 guidelines and the studies cited therein.
Hwang JA, Kim S, Jo K-W, Shim TS. Natural history of Mycobacterium avium complex lung disease in untreated patients with stable course. Eur Respir J 2017;49:1600537.
Crossref, Medline, Google Scholar
I want to add that this is a patient-based support group and none of us are providing medical advice. No one should be relying on my comments, or any other member’s comments, for their treatment decisions. We are all sharing our experiences and resources as acts of generosity, and to the extent that shared information is of interest, it should only be a starting point for each of us to do our own research and analysis, discuss with our medical team., etc. I really appreciate this group, it has been a tremendous resource for me precisely because of other’s candor. For me, I don’t want anyone to hesitate to share their thoughts on a topic for fear of being labeled “mistaken” or “bad information”.
Lastly, while I understand the significance of “researched evidence based info” the 2020 NTM treating guidelines themselves note throughout how little evidentiary support there actually is for the guidelines. And to me much of the available “science” on NTM is of uncertain value given they are frequently small, single center review studies of incomplete medical records. We are all in waters that have been relatively unstudied, and for me, that necessities an open mindset. Again, I want everyone to share whatever thoughts, opinions, experiences, and resources they’ve got. It is all valuable to me.