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Hi Barbara,
My ID doctor is very good so he did tell me about the improvements, however, I do read my results as soon as they are available from either Quest for the cultures or Advent Health for the CTs. It is always best, I think to look at the results and have questions ready before your next visit with the doctor. Quest results show a number like you mentioned. I went from 4+ to 1+. The CT, shows multiple cavities that have shrunk and no new ones. I always go to the same place so they add a comparison from the last scan.
We learn as we go so you are correct about knowing what to ask next time.
I am fortunate with my ID doc but ready to fire my pulmonologist. Although I had very good news, I do still have a collapsed upper left lobe which the pulmonologist doesn't even address. My ID doc is frustrated with him also for various reasons. He has referred me to IDC in Orlando because they have a team of doctors specializing in MAC and I could get in with a good pulmonologist. Also, he said that he is unable to prescribe clofazamine (must be a university dr) and he wants me on that if the next culture is still positive.
It is so important to have good doctors, familiar with treating MAC and willing to openly communicate with us.
Replies to "Hi Barbara, My ID doctor is very good so he did tell me about the improvements,..."
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Mary-
Thank you for your reply.
I asked about the reading because for me two times the results were in a colony count that went from approximately 3 colonies to 7 colonies. That was in early 2024. Then the same lab reported the last sputum result in a 1+.
With your indication that you went from 4+ to 1+ helped me to know that my load must be low, still. My testing at NJH showed a low bacteria load in October 2023 and my last test results 1+ were in October 2024. Since starting full air way clearance I definitely am sleeping better and have not had the same dark color sputum that would come up prior to October 2023 and in October 2023. My bacteria is Mycobacterium intracellular, In October of 2023 the NJH doctor did not want me to start the antibiotics since it was a low bacteria load. Fortunately I do not have cavity showing...hope I can avoid that. My last C Scan showed improvement in two areas but also new plugging in the lower lobe. Working harder on that area now and with how I am feeling...I think I am getting it done. My Pulmonary Function Test is off the scale in the right direction continuously.
My one outward continuous symptom is the need to clear mucus often throughout the day of which I do by drawing it up, meaning sucking it up and out. It is worse after I eat. I have not been on antibiotics as yet but they have been prescribed and I have been debating what to do for myself and I need to make a firm decision. I am concerned that my pulmonologist will quit on me if I do not take the antibiotics. 'She last said to me when she told me she wanted me to start the antibiotics "You come to me to treat you why won't you let me treat you?" I guess I will find out when I message her next week if I decide not to start the antibiotics.
Having written this reminded me of what NJH determined in October 2023 regarding the antibiotics and I need to consider that in my decision of starting them or not starting them since it appears the bacteria load still appears to be low.
Thank you, happy to have had you show me that information and glad you went from 4+ to 1+
Barbara