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Hi, I got diagnosed with bronchiectasis in December after having problems with my breathing / coughing for years. I take 1 inhaler a day with a pill at night and complete airway clearances once a day. I’m 26 and do regular exercise biking 30 mins a day and completing 10k steps as well as occasionally running. I did play football etc but have had to stop due to breathing difficulty. My peak flow was originally at 500-550, but now is at 650-700. However at times I still find it hard to breathe when relaxing etc and struggle to breathe automatically at times. Is this normal? After reading many articles etc I’m very worried / anxious about my bronchiectasis getting worse as I get older if it will affect work, my social life and relationships. Does bronchiectasis always get worse as you get older and is there anyway around it? Many thanks
Just learned that I have tested positive for MAC again. I went through antibiotic treatment for 11 months in 2018. I have felt good until I had COVID in July of 2022. During COVID I developed a cough. Now MAC . My question for anyone who was treated for MAC just to have it come back. What was your treatment the second time?
I orginally had MAC in 2008, was treated with azithromycin, refampin, and ethambutol. Cleared in 2010 by the ID doc to stop meds. Ten years later, I'm back with another MAC. He put me on Azithromycin and Ethambutol for life. Said I was too prone to catching something again. Recently I had to stop the Ethambutol because of my worsening eyes. I am wondering if anyone is in a similar situation and what drugs are you taking. I need to find a replacement for the Ethambutol. It cannot be Refampin due a reaction to another drug I am on for migraines.
The link below offers suggestions for better cleaning recipes which are less irritating to our respiratory system https://www.lung.org/getmedia/3030b2d9-02f0-4be4-ab86-d6bd86f88b88/ALA-Safe-cleaning-products-MHE-program-August-2022.pdf
Have you had a sleep apnea test at home or in a hospital setting recently?
I have been trying unsuccessfully for months to arrange a way for Medicare Part B to pay for the 7% sodium chloride in 4ml vials that I use twice daily through a prescribed nebulizer to treat Bronchiectasis. I have consulted with my pulmonologist, pharmacist, Medicare directly and even a respiratory specialty hospital. Everyone says that this should be covered but has not been able to provide specific information to make it happen. Can anyone help?
Sleep hygiene is of upmost importance when you are dealing with an infection and or a chronic condition. The link below offers some suggestions. The one that I disagree with is not to take a nap. It is okay to take a nap in the afternoon if you are not feeling well, very tired, etc. We must give ourselves permission to get the rest that our bodies need. https://cci.health.wa.gov.au/~/media/CCI/Mental%20Health%20Professionals/Sleep/Sleep%20-%20Information%20Sheets/Sleep%20Information%20Sheet%20-%2004%20-%20Sleep%20Hygiene.pdf
Have you been in a pulmonary rehab program? If so, what were the greatest benefits for you?
https://www.copdfoundation.org/Learn-More/Pulmonary-Rehabilitation/What-is-Pulmonary-Rehabilitation.aspx
Do you understand the benefits of zinchttps://www.healthline.com/nutrition/zinc#sources
Do you understand the difference between a nutritionist and a registered dietician?
https://www.medicalnewstoday.com/articles/nutritionist-vs-dietician#nutritionist-vs-dietitian
How much vitamin D are you taking on a regular basis? Most of us have a low level to begin with. A level lower than 20 is considered to be deficient.
50,000 units of D2 is recommended once a week for 8-12 weeks, then levels are rechecked. Maintenance levels of D3 are in the 4,000 u daily. Again, it is based on your current level.
Please discuss the details with your health care professional. We have all learned of the great importance of Vitamin D from the pandemic.
Hello! Are you currently taking Rifampin? This drug discolors secretions, such as your sweat, tears and urine to an orange, red or brown color. I realize that most meds suggest that you avoid alcohol, but this one really means it. Labs must be checked regularly while on this medication.
If you wear contacts, consider disposable contact lenses. https://www.webmd.com/drugs/2/drug-1744/rifampin-oral/details
Zithromax is in the drug class of macrolides. Patients should have an EKG and regular hearing checks while taking Zithromax
https://www.webmd.com/drugs/2/drug-1322-3223/zithromax-oral/azithromycin-250-500-mg-oral/details
The cough has had a foul odor for a while now. The doctors say that is normal and what I have dead says it is. Does anyone have any ideas about dealing with it day to day? I don't smell it, but those around me do.
Has THE BIG THREE for MAC been a problem?
I was on the big 3 for Bronch and MAC and it made me sicker than the disease itself. But my pulmonologist just told me about a trial for patients with MAC who are not responding to standard treatment.They are using a new drug called epetaborole.You can check it at
NTMNJ@njms.rutugers.edu. The website can be found at www.macro2study.com/macro2
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Are you currently using a nebulizer? Below is an excellent re on nebulizer usage:https://www.copdfoundation.org/Learn-More/I-am-a-Healthcare-Provider/The-101-Library/Nebulization-101.aspx
Are you presently using an inhaler? The excellent article below includes links to videos which demonstrate proper usage :https://www.copdfoundation.org/Praxis/Community/Blog/Article/1845/Don-t-Forget-to-Check-the-Technique.aspx
I just joined this forum. I am 67 years old, and was diagonosed with bronchiectasis about 5 months ago. I use a nebulizer twice daily, 7% Hypersal and it seems I taste salt in my mouth and on my lips throughout the day and was wondering if anyone else experienced that?
Many of us have lower Vitamin D levels. The goal, if possible is to be around 60. Below is a list of foods, higher in vitamin D. https://www.healthline.com/nutrition/9-foods-high-in-vitamin-d
Do you understand the term dysbiosis? It refers to the imbalance of good and bad bacteria in our system. The article below explains it in detail:https://www.news-medical.net/health/Dysbiosis-and-the-Microbiome.aspx
Hello! Are you taking prebiotics? There are plenty of foods that will provide you with the prebiotic fibers your body needs. The article below mentions some of these foods. An apple is one of the foods on the list. As the old cliche goes “ An apple a day will keep the doctor ⚕️ away”
https://www.healthline.com/nutrition/19-best-prebiotic-foods#19.-Seaweed
Which of these foods do you enjoy the most?
Hello! Are you taking prebiotics? There are plenty of foods that will provide you with the prebiotic fibers your body needs. The article below mentions some of these foods. A apple is one of the foods on the list. As the old cliche goes “ A apple a day will keep the doctor ⚕️ away”
https://www.healthline.com/nutrition/19-best-prebiotic-foods#19.-Seaweed
Which of these foods do you enjoy the most?
Do you understand the difference between soluable and non soluable fiber and how they effect your gastrointestinal system? https://www.mayoclinic.org/healthy-lifestyle/nutrition-and-healthy-eating/in-depth/fiber/art-20043983
Are you currently using inhaled Amikacin? How often are you seeing an audiologist?
Below is some basic information about Amikacin from Drugs.com https://www.drugs.com/mtm/amikacin.html
Are you interested in reading an article on Mycobacterium Abcessus, written by Dr. David Griffith? https://pubmed.ncbi.nlm.nih.gov/34314673/
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