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← Return to Remission: When do you consider yourself in remission from MAC?
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Remission: When do you consider yourself in remission from MAC?
MAC & Bronchiectasis | Last Active: Feb 13, 2023 | Replies (87)Comment receiving replies
At risk of losing my ticket to ride here I’ll report not nebulizing for months and remaining concurrently symptom free. Go figure?
Replies to "At risk of losing my ticket to ride here I’ll report not nebulizing for months and..."
Wow. That is great! But your news would be more meaningful if I knew more about the extent of your disease. Symptom free for a few months is great but bronchiectasis is incurable snd progressive. Do you have bronchiectasis? If so, is it mild, moderate or severe? Did you (do you) have a mycobacterial infection? Nodules or cavities? Pseudomonas? Fungus? Any other? If you did have any lung organisms, were they treated with antibiotics?
Have you had a recent sputum test? Ct scan? If so, what did they show? All clear?
I realize I am asking you to share your private health info but there are people on this forum who have had lobes removed because of bacteria growth and while your success in being symptom free is wonderful news, your decision is not one others should even consider much as EVERYONE would love to stop any treatment as you have done.
It would help to know where you started and where you are now.
I too am curious about bronchiectasis/mac and the ability to one day not having to nebulize daily (tho I do have it down to once daily) and skipping a day once in a blue moon. Will follow your progress closely. Your wit has uplifted me many a day. Please stay on board!
Hey Don. My Mayo dr who has since retired once told me that he has only seen a handful of patients beat mac and that was only after being on antibiotics for 10 years. I have tested negative for Mac since 2014, and had been on monthly maintenance antibiotics for 9 yrs. I was taken off of the monthly rotating antibiotics in Dec of 2021, and now seven months later; I have MAI and aspergillus. The real deal is: although I tested negative for all of those years; the mac is still always with us, it is just at an undetectable level. My going off of the monthly meds was not a good idea, but it was my dr's idea, not mine. I am working on getting back on my prophylactic regimine. I wouldn't stop with the saline either, I got super lax with it, and I feel like that contributed to get this infection again. It is common for patients to get weary of their meds and nebulizing and take vacations from them. It is ok to do that, it just cannot be a very long vacation. Stay smart, and stay well. Hugs!
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Now that's living dangerously!