Options if MAC goes untreated

Linda-
It appears I did not send properly my original reply, I don't see it here on this thread.
To keep it short and for confirmation did it take two years to rid yourself of the MAC?
Have you had a positive culture(s)at any time after that period when your cultures showed you eliminated the MAC?
You apparently did build a "brick house."
Barbara

@blm1007blm1007 I read a while back in a study that spontaneous clearance of MAC takes on average 2 1/2 years, so Linda’s 2 year time frame seems on point. Off the top of my head I believe the study said that in a group that had stable CT’s for three years, 38% achieved spontaneous clearance, again with average timeframe of 2.5 years. The trick of course is having a stable CT. And even then the majority don’t spontaneously clear. Still, the percentage of those with a stable CT that do clear is not insignificant.

Hi Sue, @sueinmn Thanks for the response and tips from others as well. I do use postural drainage, breathing techniques and will restart Aerobika. Airway clearance is most important I was told, and I eat healthy meals and snacks and try to keep up my BMI. I often wear masks in crowded places, use nasal irrigation to help with occasional sinus issues and after being out in crowds. Exercise too but I could do more at times. I will use NAC once in the mornings now since twice a day might have lowered my diastolic pressure. Trying to figure that out.

Fortunately I don’t have MAC or cavities to treat at this point, and was told that my BE is mild despite the coloured mucus that must be cleared each day. BE can leave me feeling fatigued at times. I pace myself if that is the case.

I guess the cilia in my lobes / lungs were destroyed or partially destroyed by infections but the specialist says I only have mild Bronchiectasis.

I’m fortunate that my lung function etc is normal. I’ve read about the various scales that are used to assess severity of BE. I have mild BE now, but with age and possible infections over the years, that could change? That’s why I’m adamant about doing the airway clearance each day. I was told it can potentially help clear infections.

Nebulizing with saline is not something that has been recommended to me, although I have a lot of mucus to expel, but no asthma or other health challenges at present. I’m grateful for that.

I was wondering if nebbing might be something to consider to help avoid MAC or are there some risks to it at this stage for anyone without MAC? Thanks again. I welcome the suggestions or tips.

I sure wish I had known about nebulizing with saline when my BE was still mild! I think it would have been a game changer.

Do you happen to know where you read that? I always try to make certain I am relying on researched evidence based info. Not that I think you are mistaken or giving bad information- just like to read it for myself.

@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.

Hello forum. So happy to have found all this wisdom and grateful for being able to share the MAC experience. I was diagnosed with MAC in Oct 2024. My main symptom is coughing up blood which I did last night for about 20 min until I reached clear sputum. This is now the 5th time since April 2024. I’ve been to the ER twice but now am getting used to it and Dr says it’s part of the diagnosis but it happens at the most impossibly inconvenient times
Ex: night before Thanksgiving, right before I have to get on an airplane like now, etc. The first visit to ER after coughing up about 1/4 cup of blood is when they noticed the “several small cavitary nodules in lower and upper right lung” Am just getting used to Pulmonary hygiene which still needs refining - it’s the part I’m resisting and need help with. I’m very active but Dr said no more hot yoga which is awful because I’ve been doing it forever. Speaking of which, on the three occasions I’ve done a handstand and plow (both inversions) I began to cough up blood so not sure what that means other than the lungs are being affected by the compression of the yoga asana. Also nose is running constantly. The shortness of breath is getting uncomfortable too and I’m having constant heart palpitations which Dr says is from Azithromycin (Cardiologist says heart looks perfect) Given that everyone has a different experience of this condition I’m wondering how to think about the progression of things: do I expect more blood? Increased shortnesss of breath? More inhalers? Dr doesn’t give a clear picture but maybe this disease is not linear - at least he says my case isn’t serious but that seems hard to believe with all this coughing up of blood. I started titrating the 3 antibiotics (first Azithromycin, then Ethambutol, have yet to add Rigampin) on Oct 20, 2024 and felt better initially but not feeling great now. Also wondering about altitude as I love to ski. One last question: has anyone read “Reducing Exposure to NTM” by Joseph Falkinham? Be well everyone. Many thanks Joanna

Hello forum. So happy to have found all this wisdom and grateful for being able to share the MAC experience. I was diagnosed with MAC in Oct 2024. My main symptom is coughing up blood which I did last night for about 20 min until I reached clear sputum. This is now the 5th time since April 2024. I’ve been to the ER twice but now am getting used to it and Dr says it’s part of the diagnosis but it happens at the most impossibly inconvenient times
Ex: night before Thanksgiving, right before I have to get on an airplane like now, etc. The first visit to ER after coughing up about 1/4 cup of blood is when they noticed the “several small cavitary nodules in lower and upper right lung” Am just getting used to Pulmonary hygiene which still needs refining - it’s the part I’m resisting and need help with. I’m very active but Dr said no more hot yoga which is awful because I’ve been doing it forever. Speaking of which, on the three occasions I’ve done a handstand and plow (both inversions) I began to cough up blood so not sure what that means other than the lungs are being affected by the compression of the yoga asana. Also nose is running constantly. The shortness of breath is getting uncomfortable too and I’m having constant heart palpitations which Dr says is from Azithromycin (Cardiologist says heart looks perfect) Given that everyone has a different experience of this condition I’m wondering how to think about the progression of things: do I expect more blood? Increased shortnesss of breath? More inhalers? Dr doesn’t give a clear picture but maybe this disease is not linear - at least he says my case isn’t serious but that seems hard to believe with all this coughing up of blood. I started titrating the 3 antibiotics (first Azithromycin, then Ethambutol, have yet to add Rigampin) on Oct 20, 2024 and felt better initially but not feeling great now. Also wondering about altitude as I love to ski. One last question: has anyone read “Reducing Exposure to NTM” by Joseph Falkinham? Be well everyone. Many thanks Joanna

Hello forum. So happy to have found all this wisdom and grateful for being able to share the MAC experience. I was diagnosed with MAC in Oct 2024. My main symptom is coughing up blood which I did last night for about 20 min until I reached clear sputum. This is now the 5th time since April 2024. I’ve been to the ER twice but now am getting used to it and Dr says it’s part of the diagnosis but it happens at the most impossibly inconvenient times
Ex: night before Thanksgiving, right before I have to get on an airplane like now, etc. The first visit to ER after coughing up about 1/4 cup of blood is when they noticed the “several small cavitary nodules in lower and upper right lung” Am just getting used to Pulmonary hygiene which still needs refining - it’s the part I’m resisting and need help with. I’m very active but Dr said no more hot yoga which is awful because I’ve been doing it forever. Speaking of which, on the three occasions I’ve done a handstand and plow (both inversions) I began to cough up blood so not sure what that means other than the lungs are being affected by the compression of the yoga asana. Also nose is running constantly. The shortness of breath is getting uncomfortable too and I’m having constant heart palpitations which Dr says is from Azithromycin (Cardiologist says heart looks perfect) Given that everyone has a different experience of this condition I’m wondering how to think about the progression of things: do I expect more blood? Increased shortnesss of breath? More inhalers? Dr doesn’t give a clear picture but maybe this disease is not linear - at least he says my case isn’t serious but that seems hard to believe with all this coughing up of blood. I started titrating the 3 antibiotics (first Azithromycin, then Ethambutol, have yet to add Rigampin) on Oct 20, 2024 and felt better initially but not feeling great now. Also wondering about altitude as I love to ski. One last question: has anyone read “Reducing Exposure to NTM” by Joseph Falkinham? Be well everyone. Many thanks Joanna