Is there any successful story?

Let me add something that may be obvious but I think worth noting: This group is likely somewhat of a biased patient population. We may be more symptomatic, more frequently dealing with infections and other challenges, more vigilant, more data and research oriented, more anxious and need of support, or just overall more curious than the average patient. I can easily believe that those who were one-and-done “cured” 5, 10 of more years ago, even if they were part of this group during their “treating” years, are no longer checking in, at least not with any regularity. So just because those “success stories” may not be posting here doesn’t mean they don’t exist. I am not saying they do exist — I have no idea — but I think this is another good reason to seek out a MAC specialist with significant experience treating MAC. In my opinion these specialists are likely the best source for knowing what’s happening on the ground, long term. I am not aware of any study tracking reinfection rates beyond a few years (which I do think is problematic given the high reinfection rates over time).

You are such a wonderful new addition to our group - which I always say is "full of wonderful people who would rather not be here."

When you say, "I am not aware of any study tracking reinfection rates beyond a few years (which I do think is problematic given the high reinfection rates over time)"...I hear you...In the ideal world, researchers and doctors would have all the time and money they need to devote to studying illness and disease, but we all know that doesn't happen. The real problem with the research and study of rare diseases is that dollars are scarce. Compared to Asthma & COPD, Bronchiectasis is a rare disease, and NTM/MAC is far more rare, even though it may not seem like it to us. A choice must be made in most cases between developing new knowledge and treatments and following known patients over time (in our very mobile society.)

And this analysis is right on point: "This group is likely somewhat of a biased patient population. We may be more symptomatic, more frequently dealing with infections and other challenges, more vigilant, more data and research oriented, more anxious and need of support, or just overall more curious than the average patient." In fact, if I had not become a mentor on Connect and in this group, after I lived with my infections and Bronchiectasis, I might well be one of those who only checked in occasionally.

So you will see me say, day after day, in many of our discussions, that every person has a different experience with MAC & Bronchiectasis, different underlying conditions, and a different tolerance for risk in their lives.

Frequently I remind people in other groups, like Joint Replacement or Osteoporosis of the same thing - only (some of) those with problems come looking here for solutions. Even fewer actually post here - maybe one out of 10 members who are reading our discussion actually comment.

I try to remember to respect that aspect in our members, and try to never say "you must", or "never" or "always" and rarely say "you should"...

All that said, I feel like a success story, MAC & Pseudomonas free for over 5 years, with stable Bronchiectasis, and finally controlled Asthma - but knowing that can change at any time. I am forever grateful for all I have learned here, and for all those who have supported me, not just in this group, but the several others where I spend time.

My Dad was always fond of saying "There but for the grace of God go I" and never passed on the opportunity to help, support or cheer up someone else - family, friend or stranger - it is what the other volunteer Mentors and I try to do here each day.

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.

@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!

@laureltn, thanks so much for your long message. I realize that NTM is not curable, like high blood pressure or diabetes, it is chronic disease. I agree with everything you said - prevention is the key. But high daily maintenance is the best strategy to control it and co-exist with it.
It is so admiring that you hold such a positive and active philosophy - seems Appalachian Trail is so amazing! You must enjoy it a lot and I wish you continue this amazing activity! And I wish you can stay free for a much longer time after your second treatment. In my experience, exercise is necessary but balance may work better. I started jogging in Jan 2022 and by April I can run 10K a day ,but in June my NTM was developed. Of course that is my personal experience.
The mystery for me is I went to NJH for all tests and except silent Gerd, all other tests are negative. My immune is also normal. So I always hope there is a cure for me, but the doctor also confirmed even with surgery, it is not a 100% guarantee.
I will hold a realistic expectation and perform daily maintenance. The great thing for NB patients is that some of them are good for 10 years after 1st treatment.

You are amazing if you can run 10k miles a day! Inspiring, and that bodes well for your healthy future. I do want to add, though, that both high blood pressure and type 2 diabetes CAN and ARE routinely reversed with lifestyle changes. And who knows what other diseases that are considered “incurable” are ultimately not! Just putting out that ray of hope. A friend of mine with very high cholesterol whose doctor said he needed to go on statins immediately reversed it completely in a matter of a couple of months without the statins. His doc was dumbfounded, of course, since most medical training is drug-oriented and most doctors are taught little about the healing possibilities of diet and other common-sense strategies. Luckily, with BE we already know that airway clearance, a lot of which is just age-old yoga postural and breathing practices, is immensely helpful, along with things like exercise and diet. And for me the best stabilizer of my mild to moderate BE, is hot water, a warm, soupy diet, followed by breathing and other exercises. So far no medication needed, and the hard knocks of bleeding episodes with hospitalization made it clear that those simple life habits can make all the difference and must be maintained. And to be clear, I know only too well that drugs have their place in disease treatment—antibiotics taken daily for two years saved my life from TB at age 20 and I get all vaccines and flu shots available, and go through the recommended round of antibiotics during exacerbations. I am forever grateful for these drugs, yet know that in many instances drugs are overkill, and stem from the bias of typical medical education. Learning all that I can to mitigate symptoms, worsening, with lifestyle changes is where I wish to put my attention. And even though I am no longer being able to eat ordinary meals as I was able to as recently as fifteen months—and miss that—it’s not too high a price to pay for relief from constant bouts of choking and monthly bleeds.
Wishing you all the best,

Aida