Is there any successful story?

I thought that MAC was curable but that bronchiectasis was not, and that lungs with bronchiectasis are just more susceptible to contracting MAC again. No?

That is 100% correct! My question is - for a patient with bronchiectasis, with AWC, is it possible to prevent a relapse or reinfection?

This caught my attention "I am also using a mucus clearing device".
Wondering what device you are referring to?
Barbara

The one I am using is el cheapo Air Physio mucus clearance device. It seems to help somewhat. I really won’t know how good it is until I am scanned and they tell me my left lung is clear. I really can’t feel it, I can feel oxygen getting into the lungs which is something I didn’t feel when I was infected.

I am MAC free! That’s a positive for you. I did the Big 3 and then Arikayce. After many years that health issue has gone packing!! Good luck! irene5

Good luck!

I started testing negative for MAC in October, after only 20 Arikayce treatments which were added to rifampin, ethambutol, clofazimine and azithromycin daily. I am now on the 3x/week Arikayce tx because I lost my voice completely after 7 days of daily tx, despite pre-treating with glycerine and water, and post tx saline gargle and hot drink. I discontinued ethambutol in October because despite regular vision testing with no changes, I was sent for a visual evoked potential test which showed optic neuritis even before vision changes occurred. Ask your ophthalmologist if this test is available to you. Hopefully, the optic neuritis will reverse with the discontinuation of ethambutol. I have continued, fortunately, to test negative without the ethambutol and hope that this continues.

I think this is an excellent question that I am curious about also. I too have heard that there is a potential to “cure” MAC (albeit roughly 60%, so not everyone). But I have also heard that we never fully get rid of the MAC that it lurks at undetectable levels, in which case maybe it grows to detectable levels again, maybe not. Definitely having BE is a risk factor for “reinfection” but is this because of the mucus that gets trapped in our lungs (providing a cozy place to live for new bacteria) or because the structural damage provides lots of places for the initial MAC to dig in hide at low levels? Off the top of my head, I feel like from what I have read the consensus seems to be that “reinfections” are generally new infections, certainly in year 2 after treatment or later. Obviously if it is a new strain then it’s straightforward to say it is a new infection. But if it is the same strain, how can one know? We all know that just because a sputum sample is negative doesn’t mean there is no MAC. And certainly after treatment, if sputum is negative and CT stable, I can’t imagine anyone is getting a bronchoscopy simply to check for MAC. So how do we know MAC is gone-gone? I realize it may not matter. If your symptoms are gone or manageable, your CT stable (or even improved!), and your sputum negative, I think many of us would probably say “good enough”. But I do see the word “cure” batted around by various doctors, especially as regards those of us on the younger side of the patient population, and the more I learn, the more I question whether “cure” is an accurate description of what one can actually hope to accomplish under even the best case scenario. This is a question that is beyond the expertise of my current doctors who are not NTM specialists. It is on my list of questions for NJH.

You have excellent response @bayarea58 . I agree that if we can put it as dormant or under control, it is good enough. Normal, healthy people also have bacteria in their lungs.
For your doubt, NJH will test what bacteria species it is. So it will tell whether it is a different, new infection or it is old infection that recurred.

@carolj68 I am curious about your drug regimen: rifampin, ethambutol, clofazimine and azithromycin daily. I have been reading about clofazimine as a potential replacement for amikacin but in your case it seemed you needed the amikacin to convert. Can you speak to your use of clofazimine? Was it included with the initial Big 3 treatment in hopes of converting without Amikacin? I read a study just last night that replaced rifampin with clofazimine in harder to treat patients (cavitary, advanced disease) but your doctor seemed to add it to the Big 3, like they do with Amikacin. I am just learning about clofazimine and trying to get a better understanding of its use with MAC. I have cavitary disease and I understand that while some ID doctors are starting to drop rifampin (and there is study done but I don’t think results out yet on just two drugs for non-cavitary disease) with cavity disease a third drug is still felt necessary, raising the obvious next question of options for this third drug. Amikacin seems an obvious choice but its known toxity levels seem to preclude long term use for many. I recently read that there is a clinical trial underway studying clofazimine for treating MAC but I don’t have any details in terms of the when/how of its tested use. My understanding is that it’s being looked at as a less toxic alternative to amikacin. I think we could all get behind a less toxic option to amikacin.

Anyone that has experience with clofazimine I would be interested in hearing about it. How was it part of your drug protocol and what was your experience.

Thanks!