Struggling with news of ntm

NTM is something most of us never heard of until, suddenly, they have it. The most important thing you can do in a complicated case like his is to find a pulmonologist who has a lot of experience treating MAC and multiple infections, many of them see very few cases where asthma progresses to these infections, and naturally want to treat. But as infectious disease doc explained, treatment can be complex, and some people are able to improve without the antibiotics. Biologics often reduce the ability to fight infection, has anyone suggested stopping them for now?

Given the complexity, it might be a good idea to seek care at a specialty center like Mayo, National Jewish Health, or another Bronchiectasis & MAC Center. Here is a list, perhaps one is near you:
https://connect.mayoclinic.org/discussion/the-bronchiectasis-care-center-network-33-centers/

Hi @janaa1, welcome to the Mayo Clinic forum, this is my first post here as well, but I’ve been perusing closely here since my diagnosis of Bronchiectasis and MAI (Mycobacterium avium-intracellulare) in late 2025. I’m really sorry to hear that your partner is going through this, especially at such a young age. I was also diagnosed at 35 (just turned 36), and it can definitely feel overwhelming at first. In my case, my wife and I also have a beautiful, but very active toddler at home, so learning how to navigate my diagnosis while keeping up with both family and work life has been a challenge. Over time though, I’ve found it becomes a process of learning, making adjustments, and gathering as much information as I can.

I have not started my MAI treatment yet as I’m also investigating gastro/colorectal issues I’m currently having, but may need to start soon if the Cipro antibiotic round I’m on does not calm the BE (Bronchiectasis) flare up I’ve experienced through the starting months of the year (just finished and so far so good). From what I’ve gathered here and from my doctors, responses to NTM treatment can vary quite a bit from person to person.

As Sue expressed above, it is strongly advised to find a care team (pulmonologist, infectious disease, or both) that is experienced with Mycobacterium related illnesses. This may or may not be easily accessible depending on where you live, but even consulting with Mayo and/or National Jewish Health remotely for guidance is a great start. In my case, I’m fortunate enough to live 2 hours away from Mayo Jacksonville which has a specialized Bronchiectasis and MAC clinic, but I’m also on the books for meeting a local pulmonologist they've referred me to who is specialized in BE and NTM per their advice.

Like many conditions and illnesses, I’ve learned that the course of its affects and the treatment decisions can look very different for each person. I'm not sure if your partner is having a similar experience, but one thing I’ve personally struggled with is being diagnosed relatively young. Virtually all of the specialists I’ve met have expressed surprise, as NTM and BE are already relatively rare conditions and even less common in younger patients. But spending time on this forum has helped me realize how many others are navigating similar paths regardless of age.

More than anything, I just want to say that you and your partner are not alone in this. This community has been one of the most resourceful and supportive places I’ve found since my diagnosis, both for information and encouragement. Wishing you both the very best as you move forward.

janaa1 @janaa1, Adding a couple of links you may find helpful as the treatment journey continues.
https://www.ntminfo.org/wp-content/uploads/2019/06/NTMSupplementalGuide.pdf

A few things to note: If there is any way he can wean off the Advair, that is what NJH suggested for me. Inhalants with steroids can cause NTMs since they interfere with lung immunity. Also, if he can get to NJH-highly recommend, especially for the multiple infections! I was diagnosed with Azithromycin resistant M.Abscessus and my local ID doctor started me on 3 harsh antibiotics. Three weeks later, I was at NJH for scheduled appointments. Here is what they told me:
1. Talk to Dr (that understands NTM infections) and hopefully wean off the steroid inhalant and maybe start on Anoro. My Insurance would not cover Anoro, so my local pulm put me on Airsupra with shorter acting steroids.
2. ID doctor at NJH told me my count was only 32 (over 400 is considered high) and I could go off the anti-biotics and do watchful wait. There are people that have been on watchful wait for many years. I know of 2 that have had low counts for over 15 years.
3. I was nebulizing twice per day with 7% saline but my local ID doctor told me I could go to 3% saline and the NJH ID doctor suggested I go to 7% saline 2/day. I hope your BF is nebulizing.
I sure hope this helps. Your BF is very lucky to have you. Keep us posted.

@kathyjjb Clarification: 1. ID doctor told me she wanted me to wean off the inhaled steroids due to adverse effects on lung immunity.

My thoughts to you all. I have been there and struggled with the news. This is a great place to be for education and support. John Torrence has been a wonderful source of info and postive vibes. He can be found at
https://www.bronchiectasisandntminitiative.org/
I have been fighting this disease for 1.5 years now and with all the airway clearance my lungs showed improvement. I try to do airway clearance with albuterol and 7% saline twice a day. for sure once a day.
I am training for a trip to Spain to walk the Camino de Santiago for 6 days with a goal of 100 miles.
I have found ways to do many things along side the airway clearance with a portable nebulizer.
Find what works for you. Dont be afraid to ask questions.

@amap2025 Would you please share where you got the portable nebulizer and brand. Good luck with your Camino de Santiago trip. That's wonderful!

It is the DeVilbiss Traveler. I searched for the best price online. My insurance only covered one nebulizer
Thank you

Thank you all for your kind messages. We’re still at the stage of trying to figure out what is happening so all of these messages are helpful. The hardest part is the fact that he is young and healthy and this came out of no where, even doctors are shocked. He is so afraid of starting treatment because of how difficult everyone says it is. Will it have permanent side effects? Will he be able to live normally during the treatment especially with a demanding job? He was also told there is no guarantee it will make things better. He is using Aerobika and nebulizing religiously, anything to avoid treatment. He wears a mask to go everywhere and only stays in a room with an air purifier because his lungs are so sensitive. They lowered his advair dose but still trying to figure out how to slowly adjust his asthma medication. Does it get better? At the moment, it feels like a lifelong sentence. Thank you all so much.

I was diagnosed 10 years ago now. So mid 40’s when started. Actually did far better with the treatments when I was younger and the disease was just discovered. I had no side effects the first few rounds. Managed to knock it back twice and then have a few years with no meds. On my third time with recurrence and struggling a bit with side effects now. But also am now taking 4 diff drugs and a daily puffer as the big 3 were not getting it under control. Will be starting on a 5 th in may if cultures still positive.
I have a great team so and blessed that way. Going to a respiratory rehab trial in may to try to get better quality of life and lung function improvement.
Just got to keep trying to stay active and positive as what other option is there.
Good luck with your meds.