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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. 

Alyssa,

Hello! Thank you for the reminder about the upcoming nutrition webinar. This topic is of utmost importance for our community. Too much protein powder, or protein powder with many chemicals, can be harmful to our health, especially our kidneys.  Protein bars can also be loaded with too many chemicals and too much sugar. This presentation will certainly be worthwhile.  

Diana,

Hello! I am glad you have joined our community. Below is a link for two educational videos on NTM, presented by Dr.Pamela McShane. Scroll down 5 spaces to see NTM Part 1 and Part 2. https://social.bronchandntm.org/resources?audience=patients Six weeks seems to be a short duration of antibiotics. Did your Pulmonologist discuss the reason for a 6 week round of antibiotics?

Below is a link for newly diagnosed patients:https://www.bronchandntm.org/For-Patients/Learn-More/Diagnoses-and-Evaluation/Newly-Diagnosed

Hello Linda,

I hope that all is well with you. I do recall Michelle MacDonald mentioning this and I have read a  few articles on this subject.

While iron is essential for many biological processes, excessive iron can promote mycobacterial growth, potentially increasing infection risk. JAMA Network

Eating a well balanced diet and a MVI without Iron for those who can tolerate vitamin supplements is the best option. Let us all support one another to keep as healthy as possible on our BNTM journeys. 

Michelle MacDonald, previously a clinical dietitian supervisor at National Jewish Health has mentioned avoiding iron in several of her webinars. She said there is not a lot of research on it, however, it seems that iron can promote bacterial growth. She recommends taking a multivitamin without iron. However, there are certain conditions that do require iron supplementation, and one should discuss this with their medical team.

Warm regards,

Linda Esposito

Hello everyone!

Our next BronchandNTM360social Coffee Break is Wednesday, September 9, 2026 @ 2:30pm EDT.

Joining us this month is Dr. Patrick Flume, MD to provide an overview of our Bronchiectasis and NTM Care Center Network structure and standards.

Resources:

https://www.bronchandntm.org/For-Patients/Find-Care-and-Support/Care-Center-Network/General-Information

We will open the call fifteen minutes early, so please join us if you wish to speak casually with us or other community members. Any health-related discussion will be held until the start of the meeting.

The meeting registration link is here: BronchandNTM360social Coffee Break Registration

Looking forward to seeing you soon!

Kelly C,

You are most welcome! Let us know if you have any other questions.:) 

😃 Hello-Thank you so much, so very appreciated! 

Kelly,

Hello! I am so glad that you were able to finish the 18 month cycle of antibiotics and you are doing okay. There are many different brands, price points of vitamins with and without iron at your local pharmacy , a vitamin shop, a health food store, or an online.  Please see the link before for a few brand recommendations. Iron is also very constipating for many people- a topic that few want to discuss….Eating fresh fruits such as kiwis and more vegetables everyday will boost your immune system. Taking infection precautions is of utmost importance as well. Wishing you the very best! I am happy that you found our site. https://proteinjug.com/best-womens-multivitamin-without-iron/

Hi everyone,  so happy to have found this group. Thank you so much for the warm welcome.  I have recently completed my 18 month  antibiotics  treatment course. I'm looking to boost my immune system with a daily multivitamin. I was wondering if I should avoid a brand with iron as I remember hearing the ntm bacteria use it to replicate?  Thanks again and I wish everyone the best. 

Singer,

Hello! There are small water-flow meters that can measure the gallons passing through a particular faucet or shower, rather than measuring the whole house. 

For the shower-You want an inline digital water-flow meter that installs between the shower arm and shower hose/head. It can display flow and/or cumulative gallons.

Many inexpensive meters are designed for garden hoses, so I would not automatically use one on a shower unless it’s rated for potable water and hot-water temperatures. 
For a sink- There are also small inline meters that can be installed on the water supply line going to the faucet. Some are specifically designed for water filtration systems and can totalize gallons.

I am not allowed to endorse any particular company but I read that the DigiFlow 6000R tracks accumulated gallons and is designed for relatively low household flow rates.  I hope that this information helps you. 

I am using SafeWater Products filters.   The company gives a greatdiscount for Bronc. patients. However. I can't trust two months or three months recommendation for when to replace them..  too many variables.  

 Does anyone know of a meter that can be attached to the sink and or the shower to count the gallons of water going through it?

Thanks for doing this Brittany. I don't have any questions today--but I'm sure I will. Having this resource will be great

Welcome to the community DorisJeanne! We’re glad you’re here!

Brittany,

I am looking to forward to the new Medicare Information site.  The multiple Medicare Plans with different alphabetical letters, the Advantage plans, and the enrollment period can be confusing to many individuals.  This resource will be so helpful in assisting with everyday Medicare questions.  Thank you for organizing this for our BNTM community.