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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.

https://clarametyx.com/clarametyx-biosciences-anno...

Windy,

Hello! Welcome to the community. You can purchase saline online on Amazon, priced at $29.00 per box, or at stores like Walmart.. There are several different brands posted on Amazon in a similar price range.

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?

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