Hello Cila, I am ABSOLUTELY not advocating this for ANYONE .. this is just me! I also have sleep issues .. don't know if it is age .. using the antibiotics .. who know what it is. I do NOT want to get started on prescription sleep meds so what I have done is over the counter .. because I am small .. 5'2 .. 116" .. I bite in half the tablet type "Unisom". You can get the blue tablet in generic much cheaper. It is not a panacea .. but I have found it has helped me. Just my biology .. don't know if it will help anyone else.

I know you are in a tough period of time .. so just try to find ways to "fill your cup" .. for each of us it is different. A walk in a park .. reading a good book .. talking to a supportive friend .. working in the garden .. meditation .. a nice bubble bath. Whatever fills your cup .. remember .. you can't pour from an empty cup. You have nothing to give yourself or anyone else if you are trying to run on "empty". Figure out what works for you .. AND DO IT!! YOU ARE IMPORTANT! You are worthy of taking the time to fill that empty spot within you right now that is filled with fear. Fill it with joy and peace .. figure out what works for YOU .. and then DO IT!! Remember "Happiness is an Inside Job" .. nobody can do it for you .. each person must find it for themselves. But I am sending you Lots of Positive Energy to get you started on that Journey! Sending Hugs! Katherine

Thank you so much Katherine, I'm also 5'2 same weight as you are and try to think positive about this disease. Thanks to all of you who take time to share your experience. God Bless you all.

Hello Janet, I so agree with you. That is why I emailed Dr. Aksamit. I feel such a responsibility for accuracy on our Forum .. I know we all are depending on each other not only for support .. but also for good information.

I was just delighted at the speed with which beloved Dr. Aksamit responded to me! I want to quote him accurately so I am going to copy and paste his reply so you all can come to your own conclusions. We each must do our own "Due Diligence" and make our own decisions on just what we must do but I wanted to clarify my understooding that with my Bronchiectasis and MAI/MAC I could be "stabilized" .. but not cured of the MAI/MAC.
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Per Dr. Timothy Aksamit, Mayo Clinic, Rochester MN:
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I have made a few more minor edits.
Dr. A

As far as MAC treatment / stabilization / cure goes; my position is unchanged. I would caution that there is a bit of semantics here. Specifically, for those patients able to take three mycobacterial drugs for MAC (non-cavitary, macrolide susceptible), sputum clearance rates are approximately 90% (92% in our experience).

If these same patients take three drugs for 12 or more months after the MAC is gone away in the sputum, it stays out of the sputum in about 2/3 of patients. All patients have persistent abnormalities on their CXRs and Chest CT scans even after 12 months of sputum conversion (that is, the MAC has gone away in sputum).

Point is that if we were to do a lung biopsy under anesthesia at the end of therapy I judge that we would potentially see changes of MAC. So, if it goes away in sputum ('sputum conversion') but changes on CXR / CT scan persist does that mean that it is cured? I do not know that answer but I can say that we continue, even during and after treatment, to be exposed to MAC from the environment all the time. For those patient that have NTM come back with either MAC or another NTM, we understand that these NTM are different germs than the original. In this regard I generally tell patients as we discussed that I believe this is treatable but not necessarily curable (even though it goes away in sputum and does NOT return in sputum in most).

Odds are in your favor that if we can complete a full course of therapy that the MAC will go away and stay away (in sputum) for at least half (2/3) patients.

I understand that this is a confusing topic and could gladly expand further either on clinic follow up or through correspondence. I judge that you have received good information but the information needs to be taken in context.
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UPDATE: Unfortunately I posted a personal reply opinion from Dr. Aksamit. He preferred that I post an opinion with a few edits .. see the above corrected version. I carefully compared the two versions and they are essentially the same opinion .. merely punctuation etc changes. His basis opinion is unchanged.

Hope this above information from Dr. Timothy Aksamit helps all of us on our shared journey! Katherine

Love your message here, katemn! "FILL YOUR CUP"! For sure "Happiness is an Inside Job"! Each of us needs to find the joy in our lives. Joy is sometimes hidden really deep, but it is there!

Wow @katemn. Thanks for taking the time to contact Dr. Aksamit and please pass our thanks on to him for providing an answer so quickly and giving you permission to share it.

Thanks Katherine and Dr Aksamit,great explanation that clears it up for us and gives us great hope for our futures! 🙂

Thanks Katherine for getting us that information. And so quickly, too!!