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

Posted by Sue, Volunteer Mentor @sueinmn, Jul 31, 2023

What is the point of this discussion?
Let's stop scaring one another when we talk about treatment. Based on the severity of our infections, some people NEED antibiotic therapy to regain their health. Others of us are fortunate to be able to maintain with airway clearance, saline nebs, diet and exercise.

What do we have in common?
We have MAC or NTM, usually with Bronchictasis, COPD, or another chronic lung condition.
We have struggled to find a health care team that understands these rare conditions and how to treat them.
We came to Mayo Connect seeking answers and support.

How are we different?
Based on our own experiences, we each have a personal point of view on how MAC/NTM and Bronchiectasis "should" be treated.
Our conditions vary greatly in severity and symptoms.
We each bring our own "hotdish" of age, other conditions, drug tolerance or allergies, etc.
A treatment that works for me may be intolerable to you and vice versa.
Let's remember that Mayo Connect is here to provide evidence-based information, as well as to share personal journeys.

So what to say when talking about treatment?
It is perfectly okay for me to say "I had a bad reaction to Drug A" but not to say "Nobody should take Drug A!" if Drug A is the medically accepted protocol for treating a condition.
Likewise it is okay to say "There is a risk of X Side Effect" and even better to say "Y% of people experience this side effect." Or "Here is how to recognize this side effect..."

And it is wonderful to talk about all the additional ways we have found to stay healthy, as long as they are medically sound.

What have you personally found to be the most, or the least helpful in our support group?

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

dorma | @dorma | Aug 4, 2023

In reply to @liangni1 "@dorma:l had been diagnosed MAC and bronchiectasisend of last year.I had taken the 3 antibiotics since.My..." + (show)

He said he was going to, but after waiting several weeks, I called, and there was no order for anything. I have recently changed doctors. I did have a bronchoscopy last year, but he never told me anything...or about my last CT scan. Thus; the new doctor. As of last night, I stopped the Rifampin. The side effects were getting worse. I've been on the 3 for 13 months. I have an appointment the 29th of this month with the new doctor.

liangni1 | @liangni1 | Aug 5, 2023

In reply to @dorma "He said he was going to, but after waiting several weeks, I called, and there was..." + (show)

I suggest you find a pulmonologist who treats MAC, or a doctor in the infection department. Many pulmonologist doctors have no concept or experience with MAC. Never looking for a family doctor for your lung disease.

donnajones | @donnajones | Aug 5, 2023

In reply to @liangni1 "@dorma:l had been diagnosed MAC and bronchiectasisend of last year.I had taken the 3 antibiotics since.My..." + (show)

No, I was just on the Abxs for a year and then that was it. No sputum culture after that. I would have liked follow up to ensure I was clear of it.

dorma | @dorma | Aug 5, 2023

In reply to @liangni1 "I suggest you find a pulmonologist who treats MAC, or a doctor in the infection department...." + (show)

He IS a pulmonologist! That is why I am so disappointed with him.

bonniehanson | @bonniehanson | Aug 5, 2023

Is there a discussion group for mycobacterium abscesses??

liangni1 | @liangni1 | Aug 5, 2023

In reply to @dorma "He IS a pulmonologist! That is why I am so disappointed with him." + (show)

Not every pulmonologist has knowledge and expertise of MAC lung disease .I searched north Orlando fl area ,found 30 some pulmonologist but only one has expertise of MAC lung disease.When you search the web read information about their expertise.

dorma | @dorma | Aug 5, 2023

So true. the new one was recommended by an extremely good hospital nurse. I'm hopeful.

Sue, Volunteer Mentor | @sueinmn | Aug 5, 2023

In reply to @bonniehanson "Is there a discussion group for mycobacterium abscesses??" + (show)

Hello Bonnie and Welcome to the MAC & Bronchiectasis group.
We have discussions of M Abscessus in several places here, but the most recent active one is
https://connect.mayoclinic.org/discussion/now-infected-with-mycobacterium-abscessus/
HERE IS A SEARCH TIP FOR EVERYONE! Connect kindly had this lovely feature added a few months ago to help us find relevant info more easily.
Scroll to the top of this discussion, and click on "< C & Bronchiectasis" you will move up to the main page for our Support Group. The search box there directs you just to discussions inside our own group, not all of Connect. You can type in "Abscessus" and a list of all our own posts containing the term will show. Each one also tells you how recently there was activity in that discussion.
Let me know if this helps you
Sue

irene5 Irene Estes | @irene5 | Aug 6, 2023

In reply to @liangni1 "Not every pulmonologist has knowledge and expertise of MAC lung disease .I searched north Orlando fl..." + (show)

Who is the Orlando area pulmonologist who treats/has knowledge of MAC? Thank you. Irene5

irenea8 | @irenea8 | Aug 6, 2023

In reply to @sueinmn "Hello Bonnie and Welcome to the MAC & Bronchiectasis group. We have discussions of M Abscessus..." + (show)

I do not see "< C & Bronchiectasis" anywhere to click on.

View More View Less

Please sign in or register to post a reply.