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Just found out I have mycobacterium abscessus!
MAC & Bronchiectasis | Last Active: Apr 12, 2023 | Replies (118)Comment receiving replies
I also have just been diagnosed with micobacterium abscessus from a recent sputum culture. I was diagnosed with MAC back in 2013 and was on the "Big 3". I have been MAC free for 4 and 1/2 years; however, this has just shown up in my lung from cultures from both NJH and Stanford. I am seeing pulmonologist on Friday to discuss further. Like you, I am anxious as this is described as "rapid growing". My doctor from NJH said since there were so few colonies, she would not put me on any medication at this time. I will let you know what my Stanford pulmonologist recommends when I see him this Friday. Thanks for reaching out, as I , too, do not know anything about this.
Replies to "I also have just been diagnosed with micobacterium abscessus from a recent sputum culture. I was..."
I have had a similiar situation happen to me where a MAC subspecies showed up in my sputum..it’s really nerve wracking when u get bad news..mine showed up last Oct, and is still showing on a recent sputum, but no side effects..this is the third bacteria over the years that come snd go..I’m sure this one will eventually do the same..I’m hoping the same will happen with you❤️🙏🏻
Hello, and welcome - receiving this kind of news is very upsetting, especially when you begin to read about MAC - just remember that you have this community to share your questions and concerns. As Jennifer (@megan123) told you, there has been some change in treatment protocols for MAC over the past few years, especially in looking closely at the number of "colonies" identified in the cultures when deciding whether to start antibiotics.
That said, since you are seeing the pulmonologist today, if the recommendation is the same - watch and see - you may want to ask about using increased airway clearance and hypertonic saline (7% vs the usual .9%) to try to keep the bacteria under control. Here is an article for you, with links to the underlying studies: https://bronchiectasisnewstoday.com/bronchiectasis-experimental-treatments/hypertonic-saline-solution/
Many on this group, including me, have managed to forego the rigorous "Big 3" and stay healthy... I managed to avoid any exacerbations for 18 months, my recent setback has been brought under control within a short time without antibiotics.
Good luck today!
Sue
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Hi @thielmann1 and welcome. Allow me to tag @irene5 @dolson0730 @megan123 @pop55 @windwalker and @alleycatkate and invite them back into this discussion.
Thielman, I can understand the anxiety at reading the description "rapid growing". I also read in another post that you've also just started chemo for recurrent breast cancer. Is your pulmonologist aware of that?