Is there any successful story?

@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.

It's good you went to NJH. I was seen by Dr. Kasperbauer in 2020, but she released me back to Vanderbilt because she said I was well on the way to being cured. Both my doctors thought I'd be a "one and done" because of my overall fitness, health, etc. I'm not immunocompromised either, unless you count the decline that comes with menopause and aging. We finished the AT in September of 2022. I may be the first BE/NTM patient to finish the whole thing, with at least 600 miles while on the Big 3. 🙂

Even though my treatment followed all the protocols, it's possible the MAC was still there, just dormant. I was developing resistance the second time around, so we dropped rifampin and added Arikayce and that did it. One day at a time!

HI Laureltn, I wish I had great energy like you, even with Big 3! That is all we need, isn't it? I also saw Dr. Kasperbauer in NJH!! I will switch to Arikayce this year ( after six month, the insurance company will approve it) and hopefully it can help me!! Same as you, I think my MAC was developed when I was approaching menopause period. My lung was clear in 2018 with an X-RAY. The hormone level really counts a lot!

Just bronchiectasis. I asked my doctors why they did not tell me to exercise many years ago, and they told me they stopped doing it generally because no one listened. I always exercised, so it was not an issue for me. I never stopped— even when not feeling great I force myself on the bike (stationary or road or gravel) at least 4x/wk. Thanks for the prayers. Good luck to you too.

That is great for you ! But marathon runners also get MAC. It may happen to anyone. You can find immune normal people with it, young boys with it, children with it, anyone! That is why I say it is an opportunitic disease.

I am currently finishing up the first 7 months of the big three. I was sputum culture positive plus had all the tell tale CAT scans to validate the DX. But, what I am hearing is that we are never truly out of the woods re MAC????? Even after completing treatment for a year of the antibiotics, it seems that the lungs are still harboring a latent colony and may resurface later in life? Is this correct? I am not immunocompromised but not sure that is what makes the difference. Any clarification would be appreciated

It will be a chronic disease, like diabetes or blood pressure. The best we can do is diligent airway clearance to put it under control. SUE also stresses AWC for many times. Some peole did really well, they are off antibiotics without recurrence for 5 or even 10 years. I hope more of us can be like this!

I have just come off the big three as well as Arikayse nebulised. In order to try to keep the MAC at bay I am nebulising with a saline 6 mixture, with the hope it will keep my lungs clean and clear. That’s my plan, time will tell how effective it will be.

I am also using a mucus clearance device, with exercise to aid in lung clearance.

Yes let's do AWC and any measure to combat this disease! I hope there are more success stories in this community to boost confidence of everyone!
I also learn from Rick to put a realistic expectation - maintain a high quality life may be successful enough! Everyone is different so we must set up different goal based on our unique condition!