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@nannette

@ehliny: Thanks for your info.I guess this is what worries me about not being near big hospitals like Mayo and The Jewish National. Is the right decision being made to start the antibiotics…do you know why even if you were diagnosed and had no symptoms they say not to do the antibiotics…that’s what so confusing. Nan

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Replies to "@ehliny: Thanks for your info.I guess this is what worries me about not being near big..."

Nan, My understanding is that MAI/MAC can NOT be cured .. it can merely be “stabilized” .. thus the MAI/MAC IS going to present in your lungs .. BUT IF you are STABLE .. you do NOT need antibiotics. ie .. I took 4 antibiotics for 30 months .. I am now “stable” . When Dr. Aksamit lets me look at my Xray .. there are plenty of pockets in my lungs .. BUT they are stable from the last Xray .. thus I do not need antibiotics at this time.

BUT if the MAI/MAC currently in my lungs go to town and “colonies” grow .. show up in my next sputum culture that is analyzed .. DARN .. I might have to go back on antibiotics. That is why it is important to have a GOOD Pulmonologist who knows about MAI/MAC .. it is like a puzzle they have to put together: the Xrays from one time to the next .. the sputum cultures .. MRI as required .. they put this all together!

I hope this helps just a little bit! Right now I have “no symptoms” of MAI/MAC .. BUT that darn mycobacterium is certainly in there in my lungs .. just not creating/growing “colonies’ at this time that show up in sputum samples. This is my understanding of it .. I stand corrected if anyone else has a better explanation! Blessings to all!

A steady dose of 3 to 5 different antibiotics over a 18 month period can do lot of damage. As long as you are not ill, not coughing up blood, suffering from night sweats, losing weight, and generally feeling awful, most physicians will opt not to treat. It might be worth one trip to Mayo Clinic in Rochester to see what Dr Aksamit would recommend. That’s what I did. (I live on Eastern Long Island). He reassured me I was doing the right thing for myself.

I do not know your whole story, but taking antibiotics also removes
the good bugs in your system, therefore leading to more problems. only
take the med for as short a time as necessary, or not if dr says do
not.

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