← Return to MAC/NTM is Different for Everyone, Treatment might be different too

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@susanp64

Good morning! This group has been so encouraging to me. Thanks to this group I have started nebulizing with saline. I have learned different methods of airway clearance. I have read two recommended books on how to approach this condition with a good attitude and incorporate medical treatment, exercise, diet, laughter/fun and other treatments like acupuncture. I just had my first acupuncture treatment. I have learned to accept this diagnosis and now view it as part of my life and not the defining thing in my life. I am not on antibiotics yet, but I have come to understand that I most likely will be on them at some point. I know when that time comes I will find the support of this group to as invaluable as it has been this far.

I have more peace about this diagnosis than I have had since I learned of it. Part of that peace comes from knowing that I have a community who will give me sound advice. Thank you for reminding us all of our responsibility to each other.

Now I need some of that sound advice. 🥰 I have only had one sputum culture (September 30, 2022). Nothing grew in the culture. My pulmonologist hasn’t suggested another culture. Should I request one? I had a CT in May of this year and things seem stable. I’m still waiting to hear from Dr. McShane at UT Tyler for an appointment. I know if she accepts me as a patient I can’t get into see her until next March unless there is a cancellation. I’m praying that I can see her sooner rather than later.

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Replies to "Good morning! This group has been so encouraging to me. Thanks to this group I have..."

Hi, NTM/MAC is very slow growing...have your symptoms increased? Is it making you cough more, feel more fatigue so you don't do things, etc? These are a couple considerations for you considering getting a sooner appointment or another sputum test. What I've heard through this site is that not all people end up taking the Big 3 meds because it hasn't affected their life as much but are perhaps being monitored.

hello susan , i am new to the forum and am wanting to read up on this condition.. i had one pos sputum culture but have been plagued with pneumonia over the past 5 months. has resolved but the MAC dx is just over the hill. my CAT scans are text book for MAC. Could you share the names of the books you have read re this condition and if it has been helpful to you?

thanks