Newly diagnosed and scared

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

Does anyone else have experience with the Clear Lungs supplement by Ridgecrest? In the patient education program of last week’s BE/NTM conference at NYU Langone, the doctors uniformly stated there was no data supporting any supplements for BE/NTM (in response to a patient audience member’s question). That is certainly not definitive, but I do put a lot of weight in the panel’s opinion. Interested in patients opinions/experiences re supplements for BE/MAC.

I agree with you. And the last thing I want is anything that dries up or reduces the natural mucus being created in my lungs due to the bronchiectasis. Hope springs eternal and a tablet to make it all better sounds so simple and elegant.

How was the NYU conference? Anything new and interesting being presented? Maybe it will be on YouTube soon.

@scoop I only attended the patient portion, which is on You Tube:
https://m.youtube.com/watch?v=Pr61jfiR7Q4
I am going for genetic counseling soon so found that discussion particularly interesting and one not covered in a similar depth in prior presentations I have attended. The presenters all had a lot of ground to cover and spoke super quickly so I actually think watching on you tube where you can pause, go back, etc., will be an easier way to digest. I have already re-listened to several of the speakers and plan to re-listen to all of them to make sure I didn’t miss anything. In addition to the genetics discussion, another stand out piece of information came through Linda who attended in person. She learned that in addition to US treating guidelines, which should be coming out first or second quarter of 2025, there will also be simplified and more straightforward standards of care published that those who cannot get to one of the newly designated care centers (1st batch to be announced soon) can take to their local doctors and say “I NEED THIS!”. That seems invaluable and I hope the standards of care come out soon, but apparently will be after the US guidelines are published so maybe later part of the year.

Good info! Thanks for the link.

Agree! Seems the culture and advertisement industry has done a good job on training our brains to think taking a pill will cure things. That would be great if it were true.