Discussions
Discussions
Hello! Memorial Day officially kicks off the start of the summer season. I hope that you have some great plans scheduled. If you are not feeling well and are unable to get out and about as you would like to, we are here to support you. We have assistance available for you in many forms. In addition to the community support you receive here on BronchiectasisandNTM360, you can call one of our Patient Ambassadors directly at (833) 411-5864. Our ambassadors are real live patients with experiences similar to yours and understand your concerns. You can also email us at contactus@bronchandntm.org to get more information on any specific questions you may have. Our ambassadors can’t provide medical advice but may be able to assist you with additional resources.
Below is a blog article on Summer Precautions- there has been an update on the time recommended to boil water that was mentioned in a previous post. Please let us know if you have any questions. I hope that you make the best of each day going forward. :)
Summer Precautions for People with Bronchiectasis and NTM Lung Disease
For many people living with bronchiectasis and NTM lung disease, allergy season can increase coughing, mucus, chest tightness, post-nasal drip, fatigue, and breathing irritation. Even “mild” allergies can place extra stress on sensitive airways.
Common allergy triggers may include:
• Pollen
• Mold
• Dust mites
• Strong fragrances & chemicals
• Smoke & poor air quality
• Pet dander
• Seasonal outdoor changes
Helpful reminders during high allergy days:
💧 Stay hydrated to help thin mucus
😷 Consider a mask outdoors during heavy pollen days
🪟 Keep windows closed when pollen counts are high
🧺 Wash bedding frequently in hot water
🚿 Bathe after being outside
🌬 Use air purifiers or clean HVAC filters if possible
💤 Prioritize rest and sleep
Always talk with your healthcare provider before starting new allergy medications or supplements, especially if you have multiple respiratory conditions. You are not alone in navigating the overlap between allergies and chronic lung disease. 💙
Does anybody have a pulmonologist in San Diego who they have found to be an expert in bronchiectasis?
Hello! Early heat waves are occurring in parts of the USA today. Do you understand the meaning of the dew point, heat index and how it can impact individuals with respiratory issues? The blog article below defines such terms used by meteorologists that may assist you in better understanding the weather forecast. Many people listen to the temperature only and do not pay attention to the dew point number. Being prepared for changing weather patterns will assist you in planning throughout the summer months. Why Weather can Worsen your Lung Condition
Hello! Springtime can bring on an increase in respiratory symptoms for some individuals. Many respiratory symptoms overlap in different respiratory disorders. Do you understand what causes wheezing? The blog article below reviews the causes of wheezing and treatment options.
Wheezing and the Bronchiectasis/NTM Patient
Please let us know if you have any questions.
Hello! I have great news to report on the time required to boil water to get rid of NTM. Jennifer Honda, PhD ,BNTM water expert presented an update at the recent NTMir Patent Conference. The research study, referred to as the BANTER study, Boiling Assessment of NTM in Tap Water Evaluation Regional, included top BNTM experts throughout the country including Dr. Joseph Falkinham , National Jewish Health and 7 other BNTM experts. The new recommendation is to boil water for 3 minutes!!! Wow! What a time saver. We don’t have to be concerned about boiling water for 10-15 minutes anymore when we are at home and or out and about. I look forward to hearing more positive updates that will lessen the time we need for daily therapies.
I started taking the newly approved BE medicine Brensupri in February of 2026. I'm interested in any feedback from others who are also using this medicine.
Thank you
Hello! Many respiratory symptoms overlap. How is bronchiectasis like asthma? Bronchiectasis inflammation is usually the result of a lung infection. Your immune system responds to infections. They release chemicals that cause airway inflammation. When this happens, it can damage the tissues lining the airways and eventually lead to airway scarring.
This scarring causes airways to become abnormally dilated. This causes mucus secreted by airway cells to become thick and sticky. The accumulation of thick, sticky mucus in the airways creates a breeding ground for germs to collect. This is why people with bronchiectasis are prone to repeated lung infections.
Bronchiectasis and asthma are both associated with an immune response. They both can cause flare-ups. Common symptoms of both are shortness of breath and coughing. Asthmatic airways are hypersensitive. This makes them “spasm” when you’re exposed to your asthma triggers. It also caused increased mucus production. This is what causes shortness of breath and coughing due to asthma. These flare-up episodes are both treated and controlled with asthma medicine.
Repeated respiratory infections worsen airway inflammation. Mucus can become thick and obstruct the airways. This is what triggers bronchiectasis flare-ups. This is what causes shortness of breath and coughing due to bronchiectasis. These episodes will not respond to asthma medicine. Treatment usually entails antibiotics and other treatments.
Unlike asthma, bronchiectasis sputum tends to be colorful. It may be yellow, green, or even bloody. Bronchiectasis may also present with fatigue, fever, chills, weight loss, and night sweats. Do you have both asthma and bronchiectasis? Let us know if you have any questions.
Hello all -
I'm new to this site and I'm glad you all are here to share with.
I would like to hear about measures you take to protect your lungs when traveling. I have gotten flare ups in the past when my son, his wife and my grandchildren have flown here for a visit (to Florida from Minnesota), usually in March, and also when I go on trips.
Thanks!
Hi everyone - just joined. I have had Bronchiectasis for almost 10 years. Over the past 3, I've been medicated 4 times for flares which resulted in recurrent C Diff. After a year of daily Vancomycin my ID doc decided to stop. Since stopping I've had a lot of gut issues - bloating, loss stools, gas and a lot of discomfort. Wondering if anyone shares this experience and if so, has anything helped? Thank you so much. Also working with a Gastro on SIBO testing and will know those results soon.
Has anyone purchased an under mattress wedge to help with nighttime acid reflux? It seems it might work better than a wedge pillow.
Hello everyone,
I'm new to the Bronchiectasis & NTM community and wanted to introduce myself. I have recently started learning more about bronchiectasis and NTM and I’m here to better understand the condition, treatment options and day to day management.
I’m especially interested in hearing about others’ experiences,what has helped you manage symptoms, any tips for maintaining lung health and how you navigate treatments or lifestyle changes.
It can feel overwhelming at first so I am really glad to have found a space like this where people share knowledge and support one another. I’m looking forward to learning from you all and contributing where I can.
Thank you in advance for any guidance or advice!
Best regards,
wajo23
Sleep is essential for healing and for functioning on a daily basis. Simple daily tasks, such as meal preparation, bathing and other activiites of daily living require menatl and physical energy. We do not have the energy if we are sleep deprived.The article below reviews specialists who assist individuals with sleep disorders You've Done Everything Right. So Why Are You Still Not Sleeping? - National Sleep Foundation
Multiple CTs have shown possible NTM MAI but every bronchoscopy and sputum labs have been negative. I have had the fundiplication Ctiff surgery, 4 sinus procedurbues and continue to have heavy thick sputum daily with non-stop coughing. I use 7% sodium to nebulize and when necessary Acetylcysteine with Albuterol. I also take Brinsupri (just started a few weeks ago). I was diagnosed with with Bronchiectasis in 2016 and have struggled for years. Any suggestions/ideas what/where I can find help/answers.
I am a newly diagnosed case of bronchiectasis. So far, no NTM present. Yesterday, all of a sudden, I had severe chills, body aches, fatigue, and fever. As the afternoon progressed, my chest and entire abdomen started to hurt, and it was somewhat painful to take a deep breath. It was incredibly painful to cough. I went to an urgent care, where they did an X-ray that did not indicate pneumonia or anything else abnormal. They also ran a urine test to check for UTI. A sputum sample from about two weeks ago had indicated haemophilus, which my pulmonary doctor chose not to treat because I was feeling okay. The attending PA at Urgent Care prescribed doxycycline, which I started to take last night. Today, the fever is mostly gone, and the pain has subsided. No issues breathing. The fatigue is still present but not as bad 24 hours ago. My question is, is abdominal and chest pain, radiating also to my back, typical of an exacerbation? I have never had that sort of pain before, it was intense, and I was rather scared. Any advice on your experiences is appreciated. Thank you.
BiomX just dropped a study for a drug to treat Pseudomonas, which was disappointing, but Clarametyx is now also working on clinical trials for a drug to treat Pseudomonas in the lung. Here is a link from a recent news release if you haven't seen it.
Hi all, Just had a Bronchiectasis flare a couple of weeks ago. I am on Albuterol via nebulizer. Pulmonologist also said use Sodium Chloride 7% solution for nebulizer 1-2 times a day to help thin mucus. Medicare Part B rejected the Sodium Chloride. Pharmacist said she has only had one person get Part B to cover it when the patient is on a maintenance respiratory drug such as a steroid. Otherwise the doctor office said I just have to pay out of pocket for the Sodium Chloride. Medicare has been absolutely no help answering any questions. What has been your experience in getting this? Very frustrating for sure.
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
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/
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 .
With BE is it safe to inhale doterra essential oil breathe in a cup of boiled water?
I have recently been diagnosed with mild bronchiectasis. I am reading what i can online about it, but there is just so much to take in.. When i'm well i don't have much of a cough, and then when i do cough its very dry, and difficult to bring anything up. I want to get into a good daily routine but just finding it hard to get into and understand whats best for me, feels like ACBT doesn't clear anything (i had a 30min chest physio app to show me this). With two young kids its so hard to find time for myself and I'm starting to realise with bronchiectasis its important to find time for yourself to be able to manage things well. Any reassurance that things will get easier to understand and how best to manage self care when feeling a bit lost at the start would be appreciated!
Hello, I was recently diagnosed with bronchiectasis and potentially NTM (awaiting sputum sample results). We currently have a trip planned for out of the country (Spain and Greece) for mid-May. Right now I am coughing a great deal, despite religiously doing my airway clearance (sodium chloride 3% solution, Acapella device, huff coughing). I am getting very concerned about traveling, because if I have a coughing attack when trying to go through customs I am very concerned that they will not let me into the country. It will also be very difficult to sleep in the same room with my husband since the coughing flares at night. There doesn't seem to be any way to make myself stop coughing. I really don't know if I am in an exacerbation or if this is my new reality. Previously, I coughed a fair amount, but it was usually triggered by laying flat or reclining. Now it is more unpredictable and much more prevalent. Does anyone have any advice? I am going back to see the Pulmonary PA (doctor unavailable until June) tomorrow to discuss but am interested in others' experience, particularly when traveling. Thank you.
Hello, I was recently diagnosed with bronchiectasis and potentially NTM (awaiting sputum sample results). Based on everything I read, I requested a referral to the UNC Bronchiectasis & NTM Clinic, in order to take advantage of the expertise and integrated care available at a specialized clinic. However, I was not accepted into the clinic (reasons not provided). Has anyone else experienced this and do you have any advice for how to get accepted into the clinic? Thank you.
I'm sure I heard on a webinar something about HRT and NTM/BE. Does anyone know of any studies into the effect of HRT on post menopausal women who get NTM? I'm wondering if it might help prevent NTM in the first place, but then once you've got it, or had it, I'm then wondering if the HRT has a positive or negative effect on stable conditions or any medications when not stable.
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