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Every cruise Ihave been on and has me with distilled water when I asked. I have used that to clean my nebulizer parts.

TomK,

Hello! Welcome to the community- I am glad you found us. I am sorry to read about your ongoing NTM infections; I have been there with a reoccurrence after a 2 year break.
You sound like a trooper with a positive attitude. This NTM journey can be very challenging at times- we are here to support you in any way we possibly can. I hope that you will check in regularly to let us know how you are doing . You are not alone on this journey- you have a community that understands what you are dealing with. Please let us know if you have any specific questions. 
Have you had time to watch NTM Educational videos? The links below are presentations by Dr. PamelaMacShane, https://social.bronchandntm.org/resources/detail/17      https://social.bronchandntm.org/resources/detail/18

Welcome, Tom K.  We're glad you've joined us!

Good afternoon. New member here. I was diagnosed with m. abscessus and bronchiectasis in Feb 2025. After 14 months on nuzyra and clarithromycin a CT scan showed I now had MAC. I was taken off the first drugs and put on rifabutin, ethambutol and azithromycin. After 12 months I had  a bronchoscopy which now showed the m abscessus has returned and brought along a friend, pseudomonas aeruginosa. They discontinued the azithromycin and tried me on levofloxacin but I had to discontinue it after 14 days.  I just started round 3 with Arikayce Aug 24, Nuzyra Aug 27 & clofazimine today.  I think the pulmonologist and ID doctors want to run another CT scan and bronchoscope in 4 or 5 months.  

I will let you know how the clofazimine goes.

🫁 INFECTION CONTROL 101: Protecting Your Lungs Starts with the Basics

Do you remember what we learned during the pandemic regarding infection control precautions? The everyday things we do to prevent infection really can make a difference. For people living with bronchiectasis and NTM (BNTM), infection prevention is especially important. You don't have to live in a bubble — but a few simple habits can help reduce your exposure to respiratory germs and other infections.

🧼 YOUR EVERYDAY INFECTION-CONTROL CHECKLIST:

• Keep your respiratory equipment clean- nebulizers, masks, tubing, spacers, and other respiratory equipment can harbor germs if they aren't cleaned properly. Follow your healthcare team's instructions for cleaning, disinfecting, and replacing equipment.
• Be mindful of shared spaces- crowded indoor spaces can mean more exposure to respiratory viruses. During times when respiratory illnesses are circulating heavily, consider improving ventilation, avoiding unnecessary crowds, or wearing a well-fitting mask.
• Clean your hands- wash your hands regularly with soap and water, especially after being out in public, before eating, and after coughing or blowing your nose.
• Practice good cough etiquette-cover coughs and sneezes with a tissue or your elbow and wash your hands afterward.
• Stay home when you're sick- if someone around you has a respiratory infection, give yourself some distance when possible.
• Keep vaccinations up to date-talk with your healthcare provider about recommended vaccines.
• Pay attention to water and environmental exposures- NTM bacteria are naturally found in the environment, including water and soil. Video on Environmental Precautions with Environmental Precautions expert, Jennifer Honda, PhD- https://www.youtube.com/watch?v=LEB1VRoH2Rs

💙 Infection control isn't about fear. It's about control. You can't eliminate every exposure — instead, focus on the small, consistent habits you can control. 🫁 Protect your lungs. Protect your health. Preventative strategies are far easier to deal with than curative strategies. Do you have any additional suggestions?

Please let us know if you have any infection control questions.

Very high dew points here today, between 72-75. These high dew points do not agree with me whatsoever… not a good day for an outdoor walk. I know that this too shall pass, dew points will drop and I will be able to get out and about again. Listening to our bodies is essential to create the best possible quality of life for ourselves. Have a pleasant evening.:)))

Vinny,

Thank you so much for posting the links. 
I hope that members and healthcare providers will make good use of these valuable apps. There is so much important information now available at one’s fingertips.  Very little information was available when I was initially diagnosed- we have come along way.😍

Thanks, Ksmiles123.  You mentioned the app, so I wanted to share that the mobile app, CareCentral: Bronchiectasis & NTM is available in the App Store and Google Play. I included the links below. There are a lot of great features in the app, including BronchandNTM360social, and we have a lot more planned.

Apple App Store: CareCentral:Bronchiectasis&NTM and Google Play: CareCentral:Bronchiectasis&NTM

🍂💙 HELLO! September has arrived… and with it comes a new season, cooler mornings, changing weather, beautiful fall days for us to enjoy. We may have days when our lungs make plans for us. We may have treatments, airway clearance, appointments, medications, and maybe “new symptoms” to think about. But we also have sunny days to enjoy, people to love, places to go, laughter to share, and moments to treasure.

So, as we enter September: 🍁 💧 Keep your airway-clearance routine going. Even when life gets busy, consistency matters. 🫁 Listen to your lungs. You know your “normal” better than anyone. If something changes, don’t ignore it. And perhaps the most important reminder of all: Don’t let Bronchiectasis or NTM take September away from you.

Take the precautions you need. Make the adjustments you need. Rest when you need to.  Ask for help when you need it. 💙Here’s to crisp mornings, beautiful September sunsets, and finding those little moments that make us smile.

Throughout the month, our educational focus will be on Infection Control Basics, Healthy Aging, Fall allergies, Telehealth, Oxygen Awareness Day, and our new Bronchiectasis and NTM App. Please let us know if you have any specific questions. 

Alyssa,

You are most welcome! Outdoor time is possible throughout the summer months with a little planning, mindfulness of how our bodies feel in different temperatures.

This is such a helpful explanation! Thank you for breaking it down so clearly. I love the “moisture cup” example; it makes humidity vs. dew point so easy to understand. Great reminder that outdoor time can still be possible with a little planning and flexibility.

Weather forecast/ predictions can be confusing for some individuals. Meteorologists on the news focus more on reporting humidity than discussing the details of the current dew point. Below are a few weather tips. 

Don’t let the humidity percentage tell the whole story! Many of us see 80% humidity and immediately think, “That’s terrible for my lungs!” but please do remember to check the DEW POINT.

Relative humidity tells you how full the air is with moisture at that particular temperature. The dew point tells you how much moisture is actually in the air.

An example : 80% humidity + cooler temperature = dew point around 64°.  That may feel very different from: 80% humidity + hot temperature = a much higher dew point

Humidity = how full the moisture “cup” is.
Dew point = how much moisture is actually in the cup.

The dew point can be a more useful number to watch when deciding how comfortable outdoor air may feel.

☀️ So before skipping your walk, outdoor lunch, or time with family:

✔️ Check the dew point
✔️ Check the temperature
✔️ Check the AQI/air quality
✔️ Consider pollen, smoke and other irritants
✔️ Pay attention to how YOUR lungs feel.
There is no single dew-point number that is “dangerous” for everyone with bronchiectasis or NTM. Some people tolerate humid air well, while others notice more coughing, chest tightness, breathlessness or fatigue.

A high humidity percentage does not automatically mean you need to stay indoors. 💚 Know your numbers. Listen to your body. Then make your outdoor plans accordingly.

Because respiratory illness shouldn’t mean missing out on the great outdoors — sometimes it’s about choosing the more comfortable hours, not avoiding the outdoors altogether. Please let us know if you have any questions.

Tori,

I am sorry to read your update- rules vary amongst the different cruise lines. Did you contact Pari Customer Service via phone or email? 

Unfortunately I have tried multiple handhelds and feel like none of them have been very efficient and they have all leaked. 

for a 10 day trip I feel like I need to make sure that I am able to get saline/medication treatments effectively.

I have done some more  research and you can’t bring any sort of plug in sterilizer on the ship.

Unfortunately I have tried multiple handhelds and feel like none of them have been very efficient and they have all leaked.

Brandon,

Great post! Happy According to Hoyle Day! ♠️to you and the community!!! This site provides valuable information at one’s fingertips for free. The information is available on many different formats- podcasts, videos, symptom tracking print outs, blog posts, explanatory material and so much more. We are here to assist you in navigating the sire to find all the valuable information, your BNTM guidebook/ rule book. Please let us know how we can assist you. We are truly here to support you. :)))

Thank you, Katie! This has definitely been a popular one. We’ve had quite a few people reaching out and asking when the recording would be available, so I’m really happy we can finally say, here it is! 

Dr. Kasperbauer did such an incredible job. There was so much great information packed into this Coffee Break, and now everyone can watch it when it works for them—pause it, come back to it, or watch it again if something really catches their attention.

I hope everyone gets a chance to check this one out. It’s definitely worth the watch!

Thanks again, Katie! ☕

Brandon,

Thank you for the recording. This is a great opportunity for members who are unable to attend the coffee break to listen to the presentation on Watchful Monitoring of NTM. 

Tim,

Hello! Which portable did you purchase that you are pleased with? I ordered one on Amazon that wasn’t good and I sent it back. I don’t feel comfortable writing the brand name here   bashing the company. It is very important to check the ratings and reviews. We don’t have time to waste returning items.:) 

I also use a hand held nebulizer that works great

I'd suggest getting a portable for under $50.  Amazon has dozens of them and I use one that works great.

MFLUSIVA , a new one on the market is the only one that contains mRNA. 
https://www.fda.gov/vaccines-blood-biologics/vaccines/mflusiva

1. For someone 65+- If you’re looking for a non-mRNA vaccine, the options I would discuss with your clinician are 

2. 1. FluZone High-Dose inactivated vaccine

   2. Fluad — adjuvanted inactivated vaccine
   3. Flublok — recombinant protein vaccine
   4. Flucelvax — cell-based inactivated vaccine

3. I hope this helps. As mentioned previously, some individuals can tolerate high dose flu vaccines while others may not be able to tolerate it, based on other current comorbidities. 

KateB,

Hello! Wishing you a good day with the Demo Trial. Please let us know how it goes. Thank you for sharing the information on the payment options. :)

Recently Libairty was the guest speaker at one of our Ntmir group leader support groups. I expressed interest in a personal demo. Today, one of the durable medical equipment companies that carry the Libairty vest is going to provide a personal demo. 
When I inquired about Medicare coverage they indicated with your pulmanologist's order Medicare should cover it and it you have a supplement insurance plan then it would be $0 cost to patient. If you are a cash pay client or insurance doesn't cover it for some reason they have a monthly plan and a hardship request can be made to see if the company can help. The goal is to get any patient who needs the best to get one. 

Which of these flu vaccines DO NOT use mRNA? Thanks. 

Vinny,

You are most welcome! It is important to know what type of flu shot you are getting and it is the right one for you. Some individuals over 65 may not be able to tolerate the high dose flu shot. It is important to discuss the type of flu vaccines with your healthcare provider. 

Thanks for sharing this info.

I desire for you to get the most accurate information possible. Below is the contact information for Pari Customer Service: We strive to provide immediate answers about our inhalation systems and therapy by telephone or email. Contact us at 804-253-7274 or 1.800.FAST.NEB (327.8632) and let us know how we can help at customerservicepari.com.

Do you have the basic Pari or the Pari Trek S?

The Trek S is designed to use the PARI LC Sprint reusable nebulizer cup. 

PARI does make a PARI LC D Disposable Nebulizer, but I would not assume it is interchangeable with your Trek. PARI lists it separately from the LC Sprint used with the Trek S. 

• Keep the nebulizer and medications in your carry-on, not checked luggage.
• Icontact PARI directly and ask whether a disposable cup is specifically approved for your exact Trek model.

You are most welcome! I didn’t know what type of nebulizer you were planning on bringing. I have the PariTrek as well. Can you contact the cruise company and ask if they will provide distilled water and a way to boil water? They may provide the water but depending upon the carrier if they would provide you with access to boiling water. I recall a few patients being able to use their drizzle pot or hot pot on board but I don’t recall which cruise ship they were on. Hopefully, other members who have taken a cruise will chime in. I will research to see if I can find more information for you. 

Thank you!

I will look into that!

I am taking my Pari Trek portable nebulizer and unfortunately the disposable cups don’t work well with it so I do need to figure out how to clean them.

Tori,

Hello! Welcome to the community. I have not traveled on a cruise since my diagnosis. Disposable nebulizer cups is one option. Baby Brezza one step sterilizer dryer mini has been mentioned in the past. 

Diane 78,

Wishing you the best at your appointment. Please keep us posted.

A review of questions to ask your health care provider: 

1. What medicines will I be taking? What is the dosing level for each medicine?
2. When and how should I take each medicine?
3. What side effects are common for these medicines? What side effects should I immediately report?
4. What airway clearance techniques or devices do you recommend?
5. Should I take any over-the-counter medicines, supplements, or vitamins to help me manage symptoms?
6. Can I exercise? What kinds of exercises do you recommend?
7. How often should I schedule visits with you? How often should I repeat testing (e.g., chest x-ray, pulmonary function tests, sputum sample, lab work)?
8. What precautions should I take? Are there any activities I should avoid?
9. 
   

Thank you for the input. I will be seeing my doctor in September and will discuss more options. 

Hello,

I am new to the group and was diagnosed with mild Bronchiecstasis last year.

I have a question about cleaning my nebulizing equipment while traveling… specifically on a cruise.

I usually sanitize by boiling my equipment in distilled water after cleaning with hot soapy water but obviously won’t be able to do that on a ship.

Any advice or suggestions would be greatly appreciated!!

Thanks!!

Thanks for sharing this pic, Jenny! Great reminder. Be present, be intentional, soak it all up!

Pam,

Great advice- thank you! Catherine Hepburn used to say, “ Nature brings solace”. We do need to have good diversional activities, such as quality time in nature to remind us of all of the natural joys that surround us.
I love the name “ Katy dids”. Katie 😍

Ron,

Thank you for sharing your airway clearance routine with the community. It takes time to figure out what works the best for our lungs but we do figure out an effective plan over time. 

Like your praying mantis, I saw a beautiful leaf, about 1 1/2 inches in breadth, on my patio screen door, a leaf I thought, until it began to move. I had to look it up, and as I don't recall ever seeing one, I was delighted to learn it was a Katydid. My grandson and I were on the patio a few evenings prior, and I told him to listen to the sound. I said those are crickets rubbing their legs together. Reading about katydids, which I learned are a type of cricket, I believe the sound we heard was from katydids, not crickets. It seems that immersing ourselves in nature, watching birds, looking at plants and flowers as we take our much needed walks, seeing bunny rabbits dash around and squirrels leap through the trees, all these things keep us mindful of that which is outside ourselves where we can have worries about our health issues. Take a step back and enjoy the beauty of the world, and let your mind be rested and your heart be full of peace, all the while taking good care of yourself.

I use a nebulizer, first with levalbuterol,then 7% saline. I take a break from the nebulizer and use a VibraPEP. Then I go back to the nebulizer and use ohtuvayre, and lastly budesonide. TWICE a day. While using the nebulizer with the levalbuterol and saline, I also use a SMARTvest. So there is significantly more you can do. And I am still searching for additional ideas to help bring up my phlegm.

Thank you for sharing the symbolism of a praying mantis!!! We all need to be reminded of believing that life events / challenges do pass and better days be on the horizon. :) 

Good advice from the Praying Mantis😀

Hello!  Did you know there are different types of flu vaccines?  WHAT ARE THE OPTIONS?

🔹 Standard-dose flu vaccine
Traditional injectable flu vaccine. Available for many age groups beginning at 6 months, depending on the specific product and current approvals.

🔹 Cell-based flu vaccine
Made using animal cell culture rather than eggs. Availability and approved age groups may vary by season and product.

🔹 Recombinant flu vaccine — Flublok
Made using recombinant technology rather than growing influenza virus in eggs. Its approved age range and availability should be confirmed for the 2026–27 season.

🔹 High-dose flu vaccine — Fluzone High-Dose
Designed for adults 65 and older. It contains more antigen than standard-dose vaccine to produce a stronger immune response. Product availability and recommendations may change, so confirm current guidance. 

🔹 Adjuvanted flu vaccine — Fluad
Also designed for adults 65+. It contains an adjuvant, an ingredient intended to strengthen the body’s immune response to vaccination. Confirm current approval, availability, and recommendations for 2026–27. 

IF YOU ARE 65+

CDC recommendations for adults 65+ may prefer enhanced flu vaccines, such as high-dose, adjuvanted, or recombinant vaccines.https://www.cdc.gov/vaccines/index.html
Have you discussed what type of flu shot you will be getting this year with your health care provider? 

Investing time in our own well being is essential to a good quality of life. Many individuals, including myself have put the needs of others before themselves. It takes awhile to transition to put ourselves first but it pays off in the long haul- as the airline stewardesses say” you need to place your own oxygen masks  on first before you can help others “. 

The literature on iron and NTM infections does need to be expanded. Another link on Iron and mycobacterial infections: Agoro R, Mura C. Iron Supplementation Therapy, A Friend and Foe of Mycobacterial Infections? Pharmaceuticals. 2019; 12(2):75. https://doi.org/10.3390/ph12020075

The concern is biologically reasonable: mycobacteria need iron, and they have sophisticated systems for taking iron from the host. Research on mycobacterial infections shows that excess available iron can sometimes promote mycobacterial growth, while iron deficiency can also impair the immune response.