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BronchandNTM360social welcomes new member Vinny Test User who
joins 5,271 current members of our community.
We're glad you're here!
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Sleep is an essential part of the healing process. Sleep provides restoration within our bodies. It impacts our ability to perform our daily tasks such as airway clearance, treatments, preparation of highly dense nutritious foods , energy to exercise and so much more. The blog article below reviews the basics of sleep, including the different phases of the sleep cycle. Please share your experiences and tips for a better night’s sleep with the community. https://www.bronchiectasisandntminitiative.org/BronchandNTM360social/Community-Discussions/Blog/Article/150/Sleep-and-Healing-for-NTMBronchiectasis-Patients
Das23,
You are most welcome! The comments above is what basic online research says, it is challenging to analyze every product that we encounter of whether or not the specific product can increase the chances of NTM. The researchers have studied toothbrushes, other household items but not enough research has been published for our community to fully understand what’s a potential risk and what is not. They are currently researching more on water products, bottles, samples and more.
We cannot live in a bubble. We must pick and choose what we think is worth a possible risk. We need to have a decent/ good quality of life.
Thanks for the research Katie
ncares,
Great question. I did a little research:
- It does NOT add liquid water or mist into the air like a humidifier
- It generates very tiny, electrically charged water particles (nano-sized hydroxyl radicals) from moisture already present in the air
- These particles are designed to help reduce odors, bacteria, and some viruses on surfaces and in air
The key concern for NTM patients
are linked to:
- Aerosolized water droplets (showers, hot tubs, humidifiers)
- Standing or biofilm-containing water systems
Is Nanoe-X likely safe for NTM patients?
Based on how the technology works:
- It does not create wet aerosol droplets like a humidifier or steam
- It does not use stored or recirculated water reservoirs
- The particles are extremely small and not a growth medium for bacteria
That means it is very unlikely to increase NTM exposure risk
Apparently Toyota (in Europe) includes a Panasonic technology in the air conditioning system in some of its cars. Nanoe-X technology feeds trillions of nano-sized, atomized water particles into the ventilation airflow. These hydroxyl radicals have been proven in independent laboratory testing to have wide-ranging beneficial effects when used in enclosed spaces. Inside vehicles such as the Corolla (in Europe), these can include: -
- Inhibiting the activity of airborne bacteria and viruses
- Helping prevent the spread of mould
- Inhibiting pollen and other allergens, such as those linked to pets
- Breaking down hazardous substances found in particulates (PM2.5)
- Eliminating common, unpleasant odours
Since this puts water into the air, I wonder whether this type of technology is safe if you have NTM? I don't know if any cars in the US have this technology.
https://newsroom.toyota.eu/toyota-focuses-on-new-technologies-for-the-2024-corolla-range/
Is it just allergies… or something more? 🌿💭
This time of year, it’s easy to blame allergies—maybe your cough picks up a bit, you feel more tired, or your breathing just feels a little off.
But sometimes… it’s not just allergies.
When Dr. Reddy joined us for our March Coffee Break, we spent time talking about exacerbations (flare-ups) and how important it is to recognize those early changes. This feels like a great way to keep that conversation going.
A few things to watch for:
• Increased coughing or a noticeable change in your cough
• More mucus, or mucus that’s thicker, darker, or different than usual
• Increased fatigue or feeling run down
• More shortness of breath than your normal
• Chest discomfort or tightness
What might lean more toward allergies:
• Itchy eyes, nose, or throat
• Sneezing and runny nose
• Clear, thin mucus
• Symptoms that improve when you’re away from triggers
The key? Knowing your baseline.
With bronchiectasis and NTM, your “normal” matters—and when something shifts, even slightly, it’s worth paying attention.
We also have a helpful section on exacerbations on our website (link at the bottom of the post) if you’d like to take a closer look. This is one of our regular check-ins as a community, because recognizing those early signs can make a big difference.
💬 Thinking back to that Coffee Break—what stuck with you? Have you ever thought something was allergies, but it turned out to be more?
Let’s keep the conversation going—your experience could help someone else catch it sooner.
https://www.bronchiectasisandntminitiative.org/Learn-More/I-am-a-Patient-or-Caregiver/Exacerbations
Hello! Warner temperatures have arrived in many parts of the USA. Have you been able to get out for a walk or some type of exercise? The link below reviews the benefits of regular exercise: https://www.bronchiectasisandntminitiative.org/Learn-More/I-am-a-Patient-or-Caregiver/Exercise
Hello! Are you looking for some inspiration today? Below are a list of 65 Spring related quotes: https://www.keepinspiring.me/spring-quotes/
Let us know if you find a favorite one that inspires you! 😍
Hello! Uplifting drug development news to share!!!The information below was posted by Dr M. Flammer, Chief Medical Officer at Insmed:
We are taking another step forward today to bring meaningful progress to people living with MAC lung infection. We shared positive topline results from our Phase 3b ENCORE study, which demonstrated encouraging and consistent results that provide a meaningful difference for those living with this serious infection.
Hello! Do you understand the difference between health care disparities and healthcare inequities? Health inequity and health disparity are related but differ in meaning. Health Disparities refer to measurable differences in health outcomes between groups, often influenced by factors such as socioeconomic status, geography, or race. Health Inequity focuses on the unjust and avoidable differences in health outcomes that arise from inequalities. It emphasizes the moral and ethical dimensions of health differences, highlighting that these inequities are often rooted in social injustices and discrimination. Disparities are about measurable differences, while inequities address the fairness of those differences.
Disparities can arise from various factors, including environmental influences, whereas inequities stem from social determinants such as poverty, education, and access to healthcare. A health disparity might be the higher prevalence of respiratory issues in a specific group compared to others. A health inequity would be the roadblock that prevents that group from getting quality healthcare, leading to worse health outcomes. Let us know if you have any questions.
Health inequity and health disparity are related concepts but differ in meaning. Health Disparity refers to measurable differences in health outcomes between groups, often influenced by factors like socioeconomic status, geography, or race. Health Inequity focuses on the
unjust and avoidable differences
in health outcomes that arise from inequalities. It emphasizes the moral and ethical dimensions of health differences, highlighting that these inequities are often rooted in social injustices and discrimination. Disparities are about measurable differences, while inequities address the fairness of those differences. Disparities can arise from various factors, including environmental influences, whereas inequities stem from social determinants like poverty, education, and access to healthcare.A health disparity might be the higher prevalence of respiratory issues in a specific group compared to others.A health inequity would be the roadblock that prevent that group from getting quality healthcare, leading to worse health outcomes. Let us know if you have any questions.
Happy Saturday! I hope that you have a pleasant day!
@DAJ....Thanks for the update DAJ
Spring has finally sprung!!! Yippee 🥳! Today marks the first day of spring, as of 745am. I hope that you are excited about being able to get out and about more frequently. Getting out for short or long walks is so good for our lungs, and our emotional wellbeing.https://www.calendardate.com/spring_2026.htm
Thank you for sharing your results so far! This is exciting stuff! @@DAJ
Today is World Storytelling Day, and what better time to honor the power of your story. 💙
If you are living with COPD, bronchiectasis, NTM, or another lung condition — or caring for someone who is — your story matters more than you may realize. The hard days, the small wins, the setbacks, the strength it takes to keep going… all of it can mean something deeply important to someone else reading along.
Sometimes sharing your story is more than just opening up. It becomes a hand reaching out to someone who feels scared, overwhelmed, or alone. It shows others that even when life is not easy, there is still courage, resilience, hope, and a way to keep moving forward.
You may never fully know how many people are encouraged by your path, your honesty, and the ways you endure and thrive. But it happens every day in this community.
So for World Storytelling Day, we would love to hear from you. What has your journey taught you? What would you want someone newly diagnosed, or a fellow caregiver, to know? Your voice could be exactly what someone else needs today. 💫
@Storyteller
meant to say the 10 mg has not been shown
to prove lung function from declining over time. The higher dose has.
My pulmo also told me the lower dose is not even used in Europe , due to this disappointing finding,
Has anyone else heard of this? I would rather start ona lower dose of any med.
Thank you for posting the link.
Post-bronchodilatora common test that determines how well your lungs are working, was measured at 1 year in the ASPEN study. People taking placebo saw a decline of 62 mL compared with 50 mL for those taking BRINSUPRI 10 mg.
The following link for Brinsupri patient information from the studies has a chart showing the difference in lung function decline between 10 mg and 25 mg.
https://www.brinsupri.com/brinsupri-study-results/
Storyteller,
You are the only one who knows your body, your sensitivities. I would discuss starting the lower dose with your healthcare provider and work your way up to the higher dose if you don’t experience any sensitivities/ adverse effects. Please keep us posted.
My pulmonologist told me the lower dose has not been shown to reduce lung function, as has the higher dose.
I would rather start with the lower dose, as I am extremely sensitive to many drugs’ side effects.
has anyone else been told this about the 10 mg, dose not being effective for lung function improvement ?
Hello! An interesting but technical research article below on the reasons why some respiratory patients do not take or stay with the medications that their healthcare provider prescribes: https://journal.copdfoundation.org/jcopdf/id/1575/Determinants-of-Medication-Nonadherence-Among-Diverse-Adults-With-Chronic-Obstructive-Pulmonary-Disease
Let us know if you have any questions.
Hello! An interesting but technical research article below on the reasons why some respiratory patients do not take or stay with the medications that their healthcare provider prescribes: https://journal.copdfoundation.org/jcopdf/id/1575/Determinants-of-Medication-Nonadherence-Among-Diverse-Adults-With-Chronic-Obstructive-Pulmonary-Disease
Let us know if you have any questions. Determinants of Medication Nonadherence Among Diverse Adults With Chronic Obstructive Pulmonary Disease.
It's National Let's Laugh Day. What makes you giggle or snort or tee-hee? Like they say, laughter is good medicine. (click on image)
It's National Let's Laugh Day. What makes you giggle or snort or tee-hee? Like they say, laughter is good medicine.
Hello! An interesting but technical research article below about the determinants of non adherence of medications for respiratory patients: https://journal.copdfoundation.org/jcopdf/id/1575/Determinants-of-Medication-Nonadherence-Among-Diverse-Adults-With-Chronic-Obstructive-Pulmonary-Disease
Let us know if you have any questions.
Health inequities in respiratory patients exist in different forms, impacting their access to care and health outcomes. Individuals from lower socioeconomic backgrounds often face barriers such as limited access to healthcare, and environmental pollutants, which exacerbate respiratory conditions. Certain racial and ethnic groups experience higher rates of respiratory diseases due to many factors, including discrimination in healthcare access and differences in treatment quality.Occupational health risks, such as exposure to harmful substances, affect workers in specific industries, leading to higher incidences of conditions like asthma and chronic obstructive pulmonary disease. Access to respiratory healthcare can vary by region, with rural areas often lacking specialized services and resources, leading to poorer health outcomes. Are you or a loved one experiencing health care inequalities in your area?
Health Equity Matters for all BNTM patients. Everyone deserves the opportunity to live their healthiest life, get quality healthcare — no matter their zip code, income, race, education, or background. Health equity means removing barriers, addressing disparities, and ensuring access to quality care for all. Fairness in health isn’t a privilege — it’s a right. Have you experienced unfairness in healthcare practices in your community?
During this month’s Coffee Break, we talked about exacerbations—a sudden worsening of symptoms in bronchiectasis or NTM lung disease. If you’re curious to learn more on the subject, check out this previous episode of the Bronchiectasis & NTM Association Podcast: https://copdf.co/exacerbations-podcast.
In this episode, Dr. Tim Aksamit, Medical Director of the Bronchiectasis & NTM Association, answers the top five questions about exacerbations submitted by the 360social community. Listen to learn how to recognize an exacerbation, track your symptoms, understand the role of the environment, and more.
Today is Impact Lung Health Day. Our BNTM team of advocates are meeting with our representatives in DC today. It is a long day of continuous meetings to increase awareness on BNTM and to educate our representatives on how BNTM impacts our lives. Our overall “ ask” is to secure more funding for research on BNTM. We are aiming for better treatments, coverage for pulmonary rehab and more.
The greater the number of patients, the greater the impact will be. Let us know if you would be interested in joining the group for the annual event in March of 2027.
NULL
Barnco,
Hello! I am sorry to read about your reoccurrence after an extended period of time. Reoccurrence is very common in the NTM community. Do not believe everything that you read online. Do you have access to a top doctor, one of the BNTM Care Center Networks?
Hi barnco24, I'm sorry to read you have MAC again. We have ways to help you in many forms. In addition to the community support you receive here on BronchandNTM360social, you can call one of our Patient Ambassadors directly toll-free at (833) 411-5864. Our Ambassadors are patients and caregivers with experiences similar to yours and understand what you are going through. You can also email us at contactus@bronchandntm.org to get more information. Although our Ambassadors can’t provide direct medical advice but can assist you with additional information and resources. You're not alone, and we're glad you're here!
Do you feel like speaking Irish/ Gaelic for the day? ☘️💚 Below are commonly used words/ phrases: https://happyirishwanderers.com/best-irish-phrases-you-need-to-know/
Let us know if you have a favorite Irish ☘️ phrase.
Top of the morning to you! Happy St. Patrick’s Day to our BNTM Community! 🍀Did you know that St. Patrick’s Day began as a celebration of hope and resilience? St. Patrick, the patron saint of Ireland, is remembered for bringing faith, perseverance, and new beginnings to the Irish people during difficult times. Over the years, the day has grown into a celebration of strength, community, a little bit of luck and more.💚Living with bronchiectasis and NTM takes patience, and determination every single day. But together, we create something powerful — a community where people support each other, share knowledge, and lift one another up.So today, I am sending a little Irish luck your way:
☘️ Luck for clearer lungs
☘️ Luck for healing and hope
☘️ Luck for brighter tomorrows
Let’s celebrate the strength and spirit of every person in this group. You are never walking this path alone. May your day be filled with hope, encouragement, and a touch of Irish luck. 🍀
Hi,
Recently found out I have MAC again (successfully treated m.avium species 10 years ago) but now have intracellular species and seems to be macrolide resistant. I have been looking at some very negative outcomes online for this scenario and wondering is there is anyone else out these who is experiencing this and what to expect moving forward for treatment plan .
We're headed to Washington, D.C. to IMPACT Lung Health this week!
Each year, the COPD Foundation mobilizes lung health advocates for a day of meetings on Capitol Hill. We work hand in hand with our COPD community members to ensure that every member of Congress knows what COPD stands for and why they should support funding for research, public health education, and improved access to necessary treatments like oxygen, non-invasive ventilation, and pulmonary rehabilitation.
Learn more about IMPACT and our policy priorities at copdf.co/IMPACT
Hello! I am very sensitive to chemicals and would not feel safe inhaling such chemicals. If you do decide to do so, please boil the water that you are using for at least 10 minutes to make sure the water has been cleaned of possible mycobacteria.
This is a great question and something that comes up in our community from time to time. While some people enjoy essential oils, it’s important to remember that strong scents or diffused oils can irritate sensitive airways, especially for those living with COPD, bronchiectasis, or NTM.
The COPD Foundation generally encourages checking with your healthcare provider before using essential oils, particularly if you are using oxygen or have noticed that fragrances trigger coughing or shortness of breath.
Everyone’s lungs can react differently, so it can be helpful to talk with your care team and also hear about the experiences others in our community have had. If you’ve encountered scents that bother your breathing, feel free to share what you’ve noticed.
With BE is it safe to inhale doterra essential oil breathe in a cup of boiled water?
Hello! Saint Patrick’s Day is around the corner. Below is a list of 50 Irish dishes if you are feeling up to cooking. Let us know if you have a favorite Irish dish to share with the community: https://www.tasteofhome.com/collection/st-patricks-day-party-recipes/
✈ Safe travels to our lung health advocates heading to Washington, D.C.!
This week, some wonderful members of our community are making their way to Washington, D.C. for IMPACT Lung Health 2026 and Hill Day. They’ll be meeting with elected officials and sharing something incredibly powerful—their real stories of living with COPD, bronchiectasis, NTM, and other lung conditions.
That kind of advocacy matters more than people realize. When lawmakers hear directly from patients and caregivers, it puts a real face and voice to the challenges our community experiences every day—things like access to oxygen, pulmonary rehab, better treatments, and continued research that can change lives.
IMPACT Lung Health brings together advocates from across the country who are willing to step forward and speak up for all of us living with COPD, bronchiectasis, NTM, and other lung diseases. It takes courage, heart, and a lot of dedication to do this work, and we’re incredibly grateful.
To everyone making the trip this week—thank you for raising your voices for the lung health community. Wishing you smooth travels, meaningful conversations on the Hill, and maybe even a few good laughs along the way with our terrific crew.
We’ll be cheering you on from back home. 💙
And when you get back, we’d love to hear how it went!
If you’d like to learn more about IMPACT Lung Health 2026, you can check it out here:
https://www.copdfoundation.org/Take-Action/Get-Involved/IMPACT-Lung-Health.aspx
Hello! We have been dealing with major fluctuations in weather throughout many parts of the USA. Weather changes do have an impact on many individuals with respiratory conditions. My energy levels vary with some weather changes. Do weather changes impact your energy level? Below is a blog article on this subject: https://www.bronchiectasisandntminitiative.org/BronchandNTM360social/Community-Discussions/Blog/Article/52/Energy-Management-The-Key-to-Living-with-NTMBronchiectasis
Hello! Do you have any specific questions about pulmonary rehabilitation? Below is a blog article on commonly asked questions on pulmonary rehabilitation. https://www.copdfoundation.org/COPD360social/Community/Questions-and-Answers/Check-In-Commonly-Asked-Questions-About-Pulmonary-Rehab-1.aspx
Anyone know if when we're watching or listening to a webinar, can the host see us? Only I have always assumed not and taken my phone with me to all sorts of places
Agree with the cream Katie. A factor that my doctor and I considered was my liver. Creams bypass the liver.
Hello! What are some benefits of pulmonary rehab?
-Increased energy
-Decreased breathlessness
-Improved well-being
-& more. Pulmonary rehabilitation—a powerful, often underused therapy that can benefit people with chronic lung diseases.
Together we could create a brighter future for people living with bronchiectasis
We’re looking for adults to join The AIRTIVITY® Study to see if an investigational medicine - designed to target the harmful inflammation that contributes to bronchiectasis – can help improve the lives of people living with the condition. Join the movement – to find out how to take part, please contact the study team, visit theairtivitystudy.com
https://airtivity.researchstudytrial.com/?cookie_consent=yes&utm_source=patient_advocacy_group&utm_medium=Bronch_NTM_newsletter&utm_campaign=patient_recruitment&r=16
Together we could create a brighter future for people living
with bronchiectasis
We’re looking for adults to join The AIRTIVITY® Study to see if an investigational medicine - designed to target the harmful inflammation that contributes to bronchiectasis – can help improve the lives of people living with the condition. Join the movement – to find out how to take part, please contact the study team, visit theairtivitystudy.com
https://airtivity.researchstudytrial.com/?cookie_consent=yes&utm_source=patient_advocacy_group&utm_medium=Bronch_NTM_newsletter&utm_campaign=patient_recruitment&r=16
It is not our intention to serve as a substitute for medical advice and any content posted should not be used for medical advice, diagnosis or treatment. We make every effort to support our members, our medical professionals cannot and will not provide a diagnosis or suggest a specific medication; those decisions should be left to your personal medical team. While we encourage individuals to share their personal experiences with COPD, please consult a physician before making changes to your own COPD management plan.
Community posts are monitored by the 360social Community Manager, as well as staff respiratory therapists, educators, and other medical professionals.