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Hello all. Four months ago, a chest CT scan showed that I have BE with a suspected NTM infection and a lung cavity. This was a huge shock because I am very active, fit and otherwise healthy. I was regularly swimming 1.5 miles/wk and walking 25 miles/wk with no breathing issues. I only had a very mild occassional cough.  Over the past 4 months, I have had many additional tests and a second CT scan confirming pulmonary M. Abscessus infection (cavitary form). My doctor recommends starting treatment with oral Clofazimine, inhaled Amikacin and oral Omadacycline. Needless to say, I am overwhelmed and scared about this disease, the notoriously stubborn infection, and the side effects from the intense treament. Is there anyone out there who has had experience with this bacterial strain and this antibiotic regimen?  

Hi Megster. 

Nausea is one of the most common side effects of taking multiple antibiotics. I have had patients say that they use ginger candy or tea to help settle the queasiness of the tummy.

Also, if your nausea gets too bad, reach out to your health care provider. There may be some prescription antinausea medicines that may be helpful. 

After being on the three antibiotic regimen for MAC the last month, a low grade queasiness is my constant companion . Yes, I take the meds with a bit of food which helps the stomach pain, but nothing has helped the nausea feeling which is present even on the days I don’t take the meds. Anyone else deal with this? How have you coped? It’s quite discouraging and definitely doesn’t help the already reduced appetite. Thanks ! 

Das23,

I love reading about your hikes. I do short walks on trails and no longer go on longer hikes for several reasons.  You inspire our group on a regular basis with your workouts. 

I train on weight machines at least 2 mostly 3 days a week. I use a stationary bike that exercises arms and legs 3-4-5 days a week. Now that it's not so hot I'll be back on the hiking trails a couple days a week---Keeps me going

Hello! This week is Telehealth Awareness Week, and its goal is to highlight the transformative impact of telehealth on patient care. This national campaign, organized by the American Telemedicine Association, promotes awareness and understanding of telehealth services across healthcare settings and specialties. Are you currently using telehealth? Some healthcare providers utilize this service beyond the initial visit; others do not utilize this service at all.  Please share your experiences, both good and bad, with our community. 

Maggie,

I agree with your words, “ scary but good”. Modern medicine is changing every day with the emergence of AI.

Maggie,

You are not alone… I enjoy yoga, walking but find weight lifting 🏋️‍♀️ a challenge. I have purple weights , awaiting me to pick them up but I just can’t get into regular weight lifting as well.  We can encourage one another to get lifting:) 

TomK,

Hello! I am so glad you were able to enjoy a week at the beach and you were able to protect yourself from the sun. Thank you for sharing your experience with the community. Hopefully, the process for obtaining Clofazamine will get easier in the near future. 

TomK,

Hello! It sounds as if you are in great hands. Some pulmonologist wait awhile before enlisting the support of an Infectious Disease doctor. I am so glad you are getting the healthcare you need and deserve. 

Well, it has been 3 weeks on clofazimine. No major issues to report except for it can upset your lower tract on occasion. We live not too far from the AL Gulf beaches. Our family spent Labor Day week there. I bought some log sleeved SPF 50 shirts, wore a hat and used plenty of sun screen on all exposed flesh regularly and never had an issue with sunburn. Your mileage may vary. Getting the RX had to be accomplished through the ID doctor for it is not distributed by the manufacturer in the US.

The pulmonologist referred me to the ID doctor the same day I was given the diagnosis of m. abscessus. The pulmonologist does the lung capacity testing, takes X-rays, initiates CT scans and does the bronchoscopies when asked by the ID doctor. The ID doctor works with him when the results come back on the samples gathered to find out which medication will work the best.  During the treatment period the ID doctor does regular bloodwork to check if there is any issues with the drugs to the kidneys and the liver. She also will get aggressive with the insurance companies when they turn a procedure or a medication down, and she usually wins. I am currently on my third round of antibiotics for NTM. I probably see the ID doctor 2 to 3 times more than the pulmonologist. 

All good info. I think a lot of people assume

when their sputum is anything but white or clear they definitely have an infection and panic. Know your own body, triggers and keep in close contact with your Dr. 💯 

All of that so very important. Consistency is the key. I work all areas and pay close attention, trying not to ignore any of it. Pace and protect to the best of my ability. 

Always so important, but not always easy. I know it should be priority but I find strength training the hardest part to be consistent with. I do Yoga daily but getting on that elliptical machine and using my weights is more difficult to stick to. Being tired vs pushing through knowing I’ll get stronger…ugh. I already have severe osteoporosis so I know the importance. It’s the one area I struggle with. 😔

Yes! It was wonderful to hear Dr. Chalmers give his talk on the highlights of the conference! I was especially excited about all the new research going on for us. The studies of MAC and antibiotics is always important. I was really surprised by the information about the work on  AI being used to read CT scans to identify bacteria and type of infection in the lungs. Scary but good. 

Megster,

Hello! I am sorry to read about your decreased appetite/ nausea. Have you discussed anti-nausea medication and or an appetite stimulant with your doctor? There are several options of these drugs in both categories. Have you tried fresh ginger , ginger tea or small amounts of ginger ale? Also, you can adjust the time of the day for taking the medication to see if this helps. 

Maggie,

Hello! I am so glad that Brensocatib is working for you. There are risks with every drug, every supplement. As you mentioned, we must evaluate if the benefits of the drug outweigh the risks. 

Hello! Were you able to attend the online webinar on The Highlights from the European Respiratory Society Conference? It is great to hear of the increasing interest in the Bronchiectasis/ NTM field. Maggie had inquired about the BEST BE Study. Was there a specific part of the conference that piqued your interest? We would love to hear your feedback. 

Thank you, I will try to be patient 😂

I’ve been taking it since the beginning when it was released. Ive only had mild side effects (hair thinning ) and feel the benefits outweigh the negatives. I have s experienced positive results in energy and lung soreness. I’ve already had two lobectomies and need to try and save the rest of my lungs. I want a better quality of life. 🙏

Did  you googlel the side effects?  I don't like them so will not take it.

Christina, what type of blood test were you thinking of in your note?  Thank you

Maggie,

Stay Tuned- more information will be able in the near future. 

Maggie,

You are most welcome! We cannot rush to a conclusion of having another infection based on a one time discolored sputum- we must look at the whole picture as mentioned above. :) 

Ron,

Hello! I am glad that the other two antibiotics worked for you. I hope that you enjoy any part of the conference live sbd or the replay. Have a pleasant day! 

Thank you. I believer that Pseudonymous has colonized. I have seen an infectious disease specialist. I did not react well to tobramyacin ... made me cough uncontrollably. I was on two (one after the other) IV antibiotics in late Dec, early Jan. They seem to have worked ... until now. (I signed up for the National Jewish seminar today but due to the time difference, Denver to New Jersey, will probably get the replays)

This is a wonderful question…I’ve often panicked when my sputum turns yellow and assume it’s an infection.! Thank you for the color chart. 
Maggie 

Thank you! I really want to be part of this study. Is there a way to contact someone about the recruitment process? 

Sterling,

Maggie, 

Hello! The Bronchiectasis and NTM Association is collaborating with Insmed on a new study called BEST-BE — Brensocatib Effectiveness, Safety, and Tolerability in Bronchiectasis.  This is a multicenter, prospective observational study following adults with non-CF bronchiectasis for 2 years while they receive brensocatib. It will look at exacerbations, quality of life, safety, and tolerability in real-world patients.  The study is specifically designed to include people with concurrent NTM lung infections, as well as immunocompromised individuals. Below is the press release, dated August 11th, 2026. Stay tuned- more detailed information to be posted in the near future. Bronchiectasis and NTM Association announces collaboration with Insmed on first-in-disease observational study evaluating real-world effectiveness of brensocatib in non-CF bronchiectasis

Hello!  I suggest that you check our National Jewish Health website in a few weeks to see if they post it.  We do not post all conference videos in our newsletter.

Hi everyone, I watched Dr. Chalmers highlights from the European Respiratory Society Congress today. He mentioned the BEST study, a research study following people on Brensocatib. Does anyone have any information on this? I’d like to be involved. Thanks! 
Maggie 

Our lungs are a key part of our health and a primary concern for most people in this community, but healthy aging means caring for your whole body. Below is part 2 of Systems Review for Healthy Aging; I posted part 1 yesterday. This is your friendly reminder to check in with each of these areas:

❤️ HEART & CIRCULATION

• Do I know my blood pressure and cholesterol numbers?

• Am I staying physically active within my abilities?

• Have I discussed any new chest discomfort or swelling with my healthcare provider?

BONES & MUSCLES

• Am I maintaining strength and balance? Am I doing appropriate weight-bearing or resistance activities?

• Am I getting enough protein and nutrients?

• Have I had appropriate bone-health screening?

🧠 BRAIN & COGNITIVE HEALTH

• Am I staying mentally and socially engaged? Am I keeping my brain active through reading, hobbies, learning, or social activities?

• Am I getting adequate sleep?

👀👂 VISION & HEARING-  When was my last vision and hearing check?

🦷 ORAL HEALTH- Am I keeping up with regular dental care? Do I have any dental pain, dry mouth, difficulty chewing, or swallowing?

🧴 SKIN- Am I noticing new or changing spots, wounds, rashes, or areas that don't heal?

🩺 REPRODUCTIVE & URINARY HEALTH- Am I keeping up with age-appropriate screenings?

Have I discussed new urinary or reproductive symptoms with my healthcare provider?

💚 HEALTHY AGING IS MORE THAN A NUMBER- Aging well with BNTM isn't about doing everything perfectly. It's about protecting your health, maintaining independence, noticing changes early, and continuing to live a meaningful life. It is about not avoiding an issue- preventative measures are far easier to deal with than curative measures.

Your lungs are important; so are your heart, bones, brain, vision, skin, bladder health, relationships—and everything in between.

What body system will you check in on today? Please let us know if you have any suggestions for the community.

They said it might be posted in the future.  Where would I find it and when?  Would a notice come out in your newsletter?

Hi Ron. Pseudomonas can be a pesky infection and often requires back-to-back treatments. (Search Eradication Therapy for Pseudomonas in PubMed, and you can read all about it.) There can be conflicting approaches to how best to remove Pseudomonas, and about half the time, it is one of those infections that people treat and live with forever, unfortunately. So here are my thoughts: the chest X-ray may not show much (as you stated), but a sputum test and some bloodwork may give your doctor an idea if the Pseudomonas is a lingering infection. Other than the oral antibiotics on occasion, those who live with Pseudomonas in their lungs have a prescription for inhaled Tobramycin that they complete each month. 

I don't want to get ahead of my skis, so first thing... ask about the sputum test and bloodwork. Get your answers. Then, put a treatment plan in place with your doctor. If you have an ongoing infection, it might be worth your time to get an infectious disease specialist (ID) weighing in. Keep us posted. In the meantime, keep up that airway clearance (as you are doing), drink plenty of water, exercise each day (whether a little or a lot - depending on energy level), and eat foods that will fuel your body. 

Tim,

You are most welcome! Let us know what your doctor says…research on eligibility is ongoing on this subject- you never know what the future holds. 

Hi all. 

If you are curious about the details of the NJH event, you can find out more here. 

Stay up to date on additional offerings to our community by subscribing to our newsletter! 

Thanks, KSmiles!  I’m not compound heterozygous, so I probably don’t qualify.   But I’ll take it up with the guy I’m seeing at Mass General.  
Tim

I have attended the conference virtually many times on the past. I feel that these conferences are very worthwhile, you learn something new each year. I don’t think they offer scholarships but you can email the contact person on the website announcement to see if they offer any scholarships or if you will be able to see recordings online in the future.

I'm wondering if anyone signed up for the conference this Saturday discussing Bronch. & NTM?  I see there is a $25. charge for online.  Is there anyway to see it without having to pay?  It sounds interesting.

Tim,

It is great to see that Trifecta has been approved for more conditions since it is a “ miracle drug “.  My recent CFTR gene was negative; I do not take this drug. 
Info on Trifecta eligibility:

• F508del/F508del (homozygous): eligible.
• F508del/another CFTR mutation (heterozygous/compound heterozygous): eligible if the person has CF.
• Only one F508del mutation but does not actually have CF: being a carrier alone does not make someone eligible for Trikafta. 
• Please discuss lab testing for CFTR genes with your healthcare provider if you haven’t already done so. I am looking forward to witnessing other new drugs becoming available for respiratory patients in the near future. 

Hi all,

Has Trikafta been approved for people who are heterozygous for the delta508f gene for CF?  If so, is anyone here taking it?

Tim

HEALTHY AGING WITH BNTM: A WHOLE-BODY SYSTEMS REVIEW 🫁❤️

Hello! When you live with bronchiectasis and NTM, lung health can easily become the main focus. But healthy aging means caring for your whole body—not just your lungs.  

Think of this as a friendly reminder to check in with the different body systems that help you stay strong, independent, and active. I will start with the immune system, digestive system and the metabolic system.

🛡️ IMMUNE & INFECTION PREVENTION

• Am I up to date on recommended vaccinations?

• Am I practicing good infection-prevention habits?

• Am I consuming the right foods to boost my immune system?

🍎 DIGESTIVE & NUTRITIONAL HEALTH

• Have changes in appetite, swallowing, digestion, or bowel habits been evaluated?

* Am I maintaining a healthy weight and getting adequate protein and nutrients?

🩸 METABOLIC HEALTH

• Are my blood sugar and cholesterol being monitored when appropriate?

• Am I maintaining a healthy level of physical activity?

• Are medications and supplements still appropriate for me?

🤝 SOCIAL HEALTH- Am I staying connected with family, friends, or my community?

• Do I have support when I need it?
• Am I maintaining activities that give my life meaning?

Healthy aging isn't about having a perfect body or never having health challenges. Healthy aging is about checking in, noticing changes, staying engaged, and getting appropriate care when something doesn't feel right. For those living with BNTM, your lungs are one important piece of the puzzle—but YOU are the whole picture.

I will focus on other body systems tomorrow.  Do you have any questions on Immune, Digestive, Metabolic, or Social Health?

Jenny,

Local libraries are a great suggestion. Some libraries offer inter generational programs; some offer classes that only get a small number of attendees. You can borrow books, magazines, videos as well- a reason to get out of the house briefly throughout the winter months. 

Hi Magg,

I live in NW Pennsylvania, and I have also been anxious about the impending changes of weather from warm and welcoming to cold and miserable. It is challenging to get outside, socialize, and find safe and easy things to do in the winter to begin with and being susceptible to the many germs makes it that much harder. I am so sorry you feel so isolated as the winter weather takes over. I loved the suggestion Alyssa gave of hosting something at your home. That would be a really great way to have control of your environment while also being able to socialize comfortably. I am sure you are not alone in feeling the isolation and it would be a great opportunity for others in your circle/community feeling that may be feeling the same. 

If this is something you are interested in but don't know where to start, I suggest reaching out to a local library and seeing if there are any locals/regulars that they may know that would be interested in a small get to together. You might also find some resources like online events, in person events on a smaller scale, and other ways to get involved/participate in a comfortable environment. I live in a really small town and have recently been taking advantage of all the amazing things my local library offers. 

Please, also take advantage of joining our monthly coffee breaks if you have not done so already. It's a great way to connect with others going through the same barriers and can offer some advice, comfort, and feeling of community. 

Patricia,     Great question- you want a personal referral from your Pulmonologist, gastroenterologist if possible. You want a registered dietitian who truly understands the needs of an NTM patient. It may take sometime to find someone in your area but it is certainly worth the time and effort to find the right person. I wish that I had found the right dietitian early on in my diagnosis. Preventative measures are far easier to deal with than curative measures. Have you watched any of the videos on Nutrition by Michelle MacDonald? https://m.youtube.com/watch?v=30L2Ha4W_Nk&ra=m