New to MAC and considering treatments options: What did you do?

If your doctor does not mention airway clearance, it is time to change doctors. The guidelines for treating NTM are online. Anyone can look them up and any doctor can write a prescription. It takes a trained NTM specialist to know the rest. Please, find an institution with NTM department where pulmonologists, ID specialists work as a team along with respiratory physical therapists, pulmonary function lab and NTM microbiology lab. There you will get your respiratory functions tested to decide if you have any deficiencies, then you sit with a PT to teach you how to do airway clearance with special devices and medical grade saline solution. It has to be done correctly to benefit. The equipment must be cleaned and sterilized properly to prevent reinfection. They will teach you how to do it. You may be one of the lucky ones who clear up the infection without ever having to take the harsh antibiotics. Obviously, your infection is caught in its infancy, so you stand a very good chance. If going to NJH is a possibility for you, I recommend you start there. They know what to do like we know how to eat and drink. They have been doing it for ever and will schedule you to stay for a few days as outpatient. It is worth the time and cost. You will know you called the right place as soon as you speak to them. Beyond their testing and recommendations there is nothing for anyone else to add. I know that from experience. I wasted valuable time with local doctors who were not NTM specialists and my condition worsened until I discovered NJH and made the trip to them.
Best of luck.

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Wow! Well, could you please tell me
1. how to find an NTM specialty department/institution (hopefully) nearest to me
2. the link for those guidelines that list the airway clearance as part of treatment

I appreciate your info and being direct to the point!

Is NJH National Jewish Hospital? Not familiar with the initials since I am new to this blog and all of this

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Thank you for the link.

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I got the link and I am in the process of reading the info there. I wondered what happened to cause someone else to reply instead of you. I thought you were the "monitor" for this group. Have I been addressing the wrong area?

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Maybe I can share a little about how Mayo Connect works? We are a group of people who are living with a variety of conditions, sharing experiences and helping one another along the way.

The MAC & Bronchiectasis group where you are posting has about 1000 members, some more active than others. Overall, I have lost track, but there are over 100,000 members participating in 70 groups.

Here are the roles of the participants in Mayo Connect:

There are just a couple of Mayo employees who are the "Moderators" of this entire system. Their job is to ensure that each poster gets some response, that posts are in the most appropriate place to get the best response, and that community guidelines are followed.

They are assisted by about 2 dozen "Volunteer Mentors" who are tasked with keeping discussions moving along. These are members who have a little extra time to devote to keeping Connect humming along. I am privileged to be one of those people, so you will see me frequently in this group, however I have no special expertise or magical powers - just a bit of acquired knowledge and a desire to help where I can. It is impossible for me to answer every post or question, even if I do know the answer.

Finally there are our awesome "Members" who step in and assist each other by responding to any question where they know the answer. This is the backbone and heart of Mayo Connect - people supporting each other on their journey. You are welcome to do the same, as you learn more on your journey with MAC/NTM.

I hope this answers your question. As a volunteer with many other responsibilities in my life, sometimes I am not on Connect for hours or days at a time - you wouldn't want to wait that long for a reply, would you? Also, be assured that if someone posts incorrect information, other members will soon step in to post the right information.

I hope you will continue to lean on Connect as you find your way through the maze that is MAC/NTM and its management!
Sue

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Thank you for all your replies and information. I am currently in the throes of coming to grips with my Dx and all the conflicting information from different sources. I also feel kind of lost on which way to turn to obtain the true information I need. I currently don't have any severe symptoms, only what has always been sinus type symptoms (I have Chronic Rhinitis or Vasomotor Rhinitis) that I've had for as long as I can remember. Although my CT Scan shows changes, I am still able to perform rigorous exercise without difficulty or shortness of breath. I do not have bronchiectasis per CT Scan but do have "tree in bud" and "ground glass". It makes for a confusing picture for me to know what is right for me to do at this point. As you can probably guess, not much guidance has been provided by my current Pulmonologist other than to not worry about it at this point. That really does not help me since I'm more of a person that wants to head off trouble "at the pass". At the very least I feel I need a second opinion to hopefully give me a better understanding of what I should do next.
Thank you for your patience and explanation regarding the blog. I've never done a blog before. If you have any pointers for me on a second opinion I would be grateful.

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Thank you for all your replies and information. I am currently in the throes of coming to grips with my Dx and all the conflicting information from different sources. I also feel kind of lost on which way to turn to obtain the true information I need. I currently don't have any severe symptoms, only what has always been sinus type symptoms (I have Chronic Rhinitis or Vasomotor Rhinitis) that I've had for as long as I can remember. Although my CT Scan shows changes, I am still able to perform rigorous exercise without difficulty or shortness of breath. I do not have bronchiectasis per CT Scan but do have "tree in bud" and "ground glass". It makes for a confusing picture for me to know what is right for me to do at this point. As you can probably guess, not much guidance has been provided by my current Pulmonologist other than to not worry about it at this point. That really does not help me since I'm more of a person that wants to head off trouble "at the pass". At the very least I feel I need a second opinion to hopefully give me a better understanding of what I should do next.
Thank you for your patience and explanation regarding the blog. I've never done a blog before. If you have any pointers for me on a second opinion I would be grateful.

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If I understand correctly, you have neither Bronchiectasis nor an infection at this point.

One question that we would never have asked 4 years ago, but which is relevant now, have you had Covid, even a mild infection? Doctors are seeing a lot of lung changes, especially "ground glass opacities" after Covid infections. Many seem to resolve themselves over time, without turning into something more serious.

What led to the CT scan that showed the irregularities?

I think, at this point, the "wait and watch" approach is what most doctors would recommend. Did you pulmonologist suggest a follow-up CT in a year?

In the meantime, the best things you can do are stop smoking or vaping if you do either, stay as healthy as you can with diet, exercise & rest, and report any changes in your lungs to the doc promptly. Are you comfortable with that approach?
Sue

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