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

Am a retired mental health therapist, overwhelmed with info, have rare lentiflavin microbacteria. I reached out to gp as I felt the need to have a fiend in Prozac. Helps with anxiety. I am trying to find pulmonary doc to keep me well with airway clearance, saline, diet and exercise. No meds as no nodules or holes! United Health care wanted $150 dollars for saline, will use Good Rx for $18.00. Lesson learned try discount cards.

I thought people visiting here who may be new to MAC/NTM might be interested in this fairly recent video from National Jewish Health, which covers the decision of when to watch and wait and when to treat quite throtoughly:
https://www.youtube.com/watch?v=6JgZCii7JuA

Thank you Sue. I was just diagnosed yesterday with MAC/NTM and am very overwhelmed at a lot of conflicting information. I'm very much a logic/information person who then makes decisions based on the latest information I have. I appreciated your calm and pragmatic approach with getting information and understanding that it will be unique to each person. It can be a lot of "noise" to sort through, and I appreciate the links and information.

A big question around NTM is when/whether to treat with antibiotics.
Here is yet another great discussion about the difference between patients. This video is well worth the 40 minutes, and answers a lot of questions that are asked here - right from the experts.

Here is the latest from NJH (National Jewish Health):
https://www.youtube.com/watch?v=bcvHKHzi4Q0

Dr Daley is one of the foremost experts on NTM, and he clarifies when to use "watchful waiting" and when and how to treat.
Sue

The "noise" and conflicting information are what brought me to Mayo Connect almost six years ago. Welcome to a club nobody would choose to join - but I'm very glad we are all here together to support one another.

My three mantras, learned at the hands of two excellent doctors are:

"Daily airway clearance, with saline nebs and/or a bronchodilator if indicated, is a valid form of treatment for some people with MAC. When it isn't enough, it's time for the "big guns" - antibiotics. They are difficult, but not to be feared."
"Bronchiectasis is a disease you live with, not die from. You need to figure out what works for you and keep going. Take reasonable precautions and get on with living. Don't let fear get in the way of living your life."
"MAC/NTM is everywhere. You cannot eliminate exposure unless you literally live in a sterile bubble. Figure out which risks are the highest for you and minimize them. Ignore the rest."

Feel free to ask questions of any of us at any time. We were all new at this one day.
Sue

Your three mantras (except I still fear if I ever have to do the Big 3) are what I've come to realize myself after much worry and self doubt. I had to live and learn this stuff for a while to understand it, and I had to wade through it myself without the good guidance that should come from our physician. The information on this site and my own knowledge search has proven well. Thank you Sue.

I may come from a slightly different perspective, where I do not expect the physician to provide much detail - that used to be the province of the "wise and loyal staff nurse" who has gone the way of the neighborhood druggist, the milkman, and the mechanic in the corner gas station.

I got my best instruction on airway clearance, sputum samples and other things MAC from my first pulmonologist's experienced RN, who he was only able to keep by threatening to quit our clinic (both have since retired.)

Now I go to a "specialty center" within our network, where there is one respiratory therapist for five docs, one RN and one PA to assist them with all that must be done. The nurse and RT earn exactly half of what they would be paid in the hospital, so needless to say, there is often turnover. The PA's generally only stay until their "spot" opens up in medical school. And the doc is allotted 30 minutes for each patient -including a pre-read of often extensive medical history and completing their notes (one hour for an initial consult, 20 minutes for a "simple follow-up").

I am fortunate to have this forum, ability to sift through technical research, and the time to do it.

Please understand that the "Big 3" are less scary than cancer treatment, life with diabetes, and many other conditions. No denying it's unpleasant, but the alternative of losing lung function or even part/all of a lung are far worse.

Is airway clearance working for you to keep the infection tamped down?
Sue

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.