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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

Thank you Delia!

I do have a question, if I may :) how do I find a nutrionist? i am looking both on the Northwestern Medicine website (my doctors are in this medical group) and in my insurance. The nutrionists that come up are MD's specializing in Pediatrics, Diabetes, or other Gastroenterology conditions and that doesn't seem to be what I'd be looking for. Any help on how to find the right type of nutritionist would be great! 

Hi Magg!

This is a great question. The good news is that you have so many options! I personally think that there is value in mixing up your workouts. I really think that weightlifting is extremely valuable and translates well to doing everyday tasks with a little more ease. I also recommend walking frequently. Before picking an exercise routine, talk to your doctor and see what recommendations he/she might have. Also, start slow and increase a little more each time. Please let us know how things go! Remember, moving your body is essential.

Good reminder to check insurance coverage before getting any tests, other than the routine tests done. I had all of the  above labs done in the past and the doctor did not put it the right ICD/ diagnostic code on the lab requisition. The correct diagnostic codes include diagnosis such as possible vitamin deficiencies, history of anemia, being underweight, a recent significant weight loss and other codes. 

Patricia,

You are most welcome! I have been down the road that you are now traveling. Please reach out at anytime with any questions you may have. 

I hope you're able to get access to a nutritionist. If not, even asking your doctor some of these questions might help. Sending well wishes!

Thank you! Yes, I will have regular labs along the way. I appreciate the feedback & will look into a nutritionist. 

Patricia,

Hello! I am sure that it is a "little scary," to say the least, to take these antibiotics for an extended period.

Rifampin is best taken at night, 1-2 hours before you go to bed. Rifampin will discolor your urine to an orange color. Rifampin has many drug interactions, so make sure that your supplements are reviewed by your doctor or pharmacist.  I am glad that you don't drink alcohol since this is one drug that absolutely does not mix well with any alcohol.

Azithromycin can be taken with or without food- I always prefer to take it with food. Discuss any antacids you may be taking with your pharmacist while taking this antibiotic.

Yes, it is recommended to take probiotics, but not within a 2-hour timeframe of taking your antibiotics.  Do you have access to a registered dietitian to assist you on your journey?  Dietitians are covered by some insurance plans. I assume that your healthcare provider informed you that you will need regular lab work while on these drugs.  I hope that the initiation of taking these drugs goes smoothly. Please check in to let us know how you are doing. 

Magg,

Hello! I walk outdoors as much as I can on good days.  I also do light weights at home and a yoga class once a week.  Below is a link to information on exercise, including the different forms of exercise.  Exercise is so important for our physical and emotional well-being.  I am looking forward to hearing about your exercise plans. Exercise | Bronchiectasis and NTM Association

what exercises do you do and what is the best exercise you have fund

Hello,

I will be starting Rifampin and Azithro, but chose not to add the Amikacin at this point. (they only offered the IV and am concerned about the side effects and it makes it very difficult to work full time and get to the hospital for the IV infusion 3x week). 

Should I be taking a probiotics as well to help maintain healthy gut bacteria?

Is there a suggested schedule of when/how to take the meds + probiotic? 

Any other foods I should increase or remove from my diet to help? (I do not drink alcholol and do not take other meds other than daily vitamins).

I appreciate any help or feedback as this is a bit scary to do.

Thank you,

Patricia

Alyssa,

 I am so happy to read that your parents are nearby ; additional support for all is a great gift 🎁 for all. 

My parents recently moved to North Carolina, and my kids are thrilled! For the first time, we were able to celebrate Grandparents Day together, and it was good for everyone’s soul. Since moving away from our extended family, it has been difficult to see my kids miss out on building a close relationship with their grandparents. I love that Grandparents Day gives us an opportunity to celebrate this special bond.

My aunt lives in an assisted-living community. She had been struggling to cook and clean for herself while living alone at home. After becoming seriously ill and being discharged from the hospital, she moved into assisted living. At first, she was very disappointed that she couldn’t return home. However, once she settled in, she enjoyed it so much that she decided to make it her permanent home.

Now she has her own space, nutritious meals prepared for her, help when she needs it, a variety of planned activities to enjoy, and unexpected friends!

Hi Magg,
As the winter months get closer, I would ask my physician for a deep dive into my immune system by requesting bloodwork from a CBC panel and beyond.  Check for Zinc, Iron, Ferratin, Vitamin C, and Immunoglobins (IGM, IGG, and IGA). Knowing your immune system is functioning properly may help you feel less anxious about socializing. Be sure to check your insurance coverage on these test before hand. 

I’m sorry you’re going through this. It’s completely understandable to feel the weight of these challenges. Balancing the need for safety, human connection, and friendships can be incredibly difficult, especially during the winter months. You are certainly not alone in having these feelings.

I think Katie offered some great suggestions. What are your thoughts on hosting gatherings at your house? For example, you could consider starting a monthly book club, a crafting circle, or simply a social gathering. This way, you can control the number of people you interact with and arrange the space to allow for spreading out.

Another idea is to join existing groups that share your interests or even try something new. My mother-in-law felt very isolated during her recent retirement years, so she started learning how to play Mahjong, which helped her connect with others.

Magg,

Below is the link to Coursera- there are so many free courses available online :

https://www.coursera.org/

Magg,

Hello! The correct link to the blog article did not appear in the post above. You can search the menu above for blog articles. The title of the article is It’s okay not to be okay w NTM/ Bronchiectasis. I think it is about the 10th blog article. 

Magg,

Hello! You are certainly not alone with your feelings. I fully understand your concerns. Do you walk? Can you walk with others from your senior center for 30 minutes every week on a set day? It would a social event even if you are just walking in the parking lot of the senior center. Have you considered going to a restaurant when it first opens at 11am or at 4pm when noone else or very few people are there? I have been super cautious for years since a family member has been going through chemo as well. However, I did get tired of the isolation and I do get out at the quietest times . Have you checked out Coursera for online classes- a lot of the courses are free. Social isolation is not good for any of us, the recent surgeon general compared social isolation is as bad as smoking many cigarettes per day. I choose not to attend crowded events throughout the winter months.Each person makes a personal decision about which risks they are willing to take. Please check in with us regularly- we are “ here” for you. Below is a blog article that may offer you some tips.
https://social.bronchandntm.org/discussion/general-discussion/sociaization?returnUrl=%2F

I was wondering if anyone has the same issue.  I live in the northeast where soon it will be winter and we are inside.  I find I am more isolated because when you go out to a restaurant or senior center church etc.  you are with people and a lot of germs and I get sick.  I am not wearing a mask I cant breath well with a mask on.  Does anyone else have the same issue.  I know some of you have small groups you belong to but my friends really dont understand my condition and think I am to concerned so I find my hobbies reading and texting but I miss human contact.  I live alone and my children are away

Magg,

Thank you for sharing your experience- I am so happy to read that it you had the best winter in awhile!!!😍. Weather changes do bother many of us- barometric pressure changes, high humidity, dew points of over 70 bother me  a lot.