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Effects of mycobacterium avium
Hi,
I have mycobacterium avium and bronchiectasis. I like doing sports but I have a very long recovery time, so I cannot do much or often. Is that due mainly to avium or to bronchiectasis? I mean, should I treat the avium, would that improve my recovery significantly? Anybody out there has any experience of before and after avium?
Thank you very much for any comment 🙂
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@ceciliase Welcome to Mayo Connect and our great support group.
How much have you learned about Bronchiectasis (a permanent lung disease) and MAC or mycobacteria avium complex (a treatable infection) in your journey so far?
What treatment(s) have you started and how/when was your infection diagnosed?
These details can help those of us who would like to share our experiences with you.
I was diagnosed with NTM MAC in 2002 at age 53. After 18 months of treatment with ethambutal, biaxin & rifampin I was NTM free. Over the years gradually I have contracted lung infections and pneumonia. I didnt even start inhalers or nebulize until 2013. It has been more progressive since 2013 & relentless since Dec 2023 when I got covid / pneumonia. I was only told I had bronchiectasis in 2023. I was very active until covid, and last few months i was put on oxygen supplementation. I am going to NJH at end of August & hoping to get Brensocatib prescribed. I have also signed up for a similar drug research study in case I do not get the brensocatib. I am 76 years old now, and if I were to give one piece of advice, it would be to make sure you get to an approved NTM bronchiectasis Clinic.
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8 ReactionsI was just diagnosed with MAC about a week ago so im searching everywhere for answers/tips/cures. here is says its a treatable infection and my question is how? right now im only using 7% saline in a nebulizer and a flutter valve. My pulmonary dr says it's a "wait and see" disease of what to do next. Is this true or can I be doing something else to help myself?
@rockinkranch "wait and see" is perfectly reasonable for many with MAC. Here is a great resource for people new to the diagnosis.
https://www.ntminfo.org/wp-content/uploads/2019/06/NTMSupplementalGuide.pdf
Whether and when to treat with antibiotics is covered on pages 10-15.