Hello All, one of our group asked me my opinion on our disease .. I thought I'd share it with you.

.. it means that after being on antibiotics we can become "stable" .. but we are not really "cured" of MAC/MAI. Unfortunately it can come back. That is why we need to have follow up appointments with our doctors.

If I am understanding Dr. Aksamit correctly .. the mycobacterium CONTINUES to stay in our lungs even after the antibiotic treatment. An example: I went off antibiotics May 2014 after taking 4-5 antibiotics for thirty months. I continued to give sputum cultures and have follow up appointments. I then had this correspondence with Dr. Aksamit on 1/12/16: "The below is the sputum result. MAC is present although smear is NEGATIVE. So, I would re-assess on return as we spoke of and not change our recommendations at this point. I am not convinced that this is an unexpected finding. I continue to believe that we should not consider restart of antibiotics at this point in time.

What this means is that mycobacterium WAS present in my lungs per the sputum sample and report .. BUT NOT colonizing .. so Dr. Aksamit felt I was STILL stable and did not need to go back on antibiotics in January 2016. I now see him again in November 2016 and will see how I am doing.

I always get copies of ALL my sputum cultures. When I was on antibiotics the reports would say:
MYCOBACTERIUM- MANY COLONIES .. OR TWO COLONIES .. OR ONE COLONIES ETC (the 1/12/16 report just said it was present .. but negative)

So I hate to get too technical since I am not a doctor .. I can only speak from my own experience .. but my understanding with our disease is we can become stable but not cured. I hope this clarifies things?. Hugs to all! Katherine

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