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.

judi55 | @judi55 | Sep 4, 2023

In reply to @liz440 "I stopped all dairy for 3 weeks per dr.s advice to see if it made a..." + (show)

Thank you for sharing.

reneemc | @reneemc | Sep 4, 2023

Anyone who can share effects of Arikayce?

Rick | @rstel7272 | Sep 4, 2023

In reply to @bbeers "Hi, I'm waiting on the results of my Bronchoscopy . Dr. suspects MAC. I had TB..." + (show)

That 1-5 is not true. Get a good Dr or 2 (or 3,4+), do your ACT's and stay active. I'm in year 6 and plan on being around quite a while.

Sue, Volunteer Mentor | @sueinmn | Sep 4, 2023

In reply to @bbeers "Hi, I'm waiting on the results of my Bronchoscopy . Dr. suspects MAC. I had TB..." + (show)

You said "...I have read that once diagnosed with MAC you have 1 to 5 years to live,..." I think you could find 100 or more people in this group to dispute that. It used to be (maybe 10 years ago or so) that if you hard severe cavitary MAC or M. abscessus that life expectancy was not great.

Over the five years I have been active in this group, so much has changed! There are new antibiotic protocols to treat infections. The importance of daily airway clearance has been proven. Use of inhaled 7% saline can help to knock down MAC, bring up more mucus, and improve lung health.

While there are undoubtedly people whose MAC, lung damage or other conditions are so severe that their life expectancy is shortened, my ID doc stresses "MAC and Bronchiectasis are not diseases you die from, they are conditions you learn to live with."

So, all that said, many of us with mild cases of MAC choose a "wait and watch" strategy. We do rigorous airway clearance, exercise and eat well, stay as healthy as we can. We hope our MAC doesn't get worse. If mine does get bad again (like it was 5 years ago) I will consider a return to the antibiotics, or maybe sign up for one of the new drug or non-drug trials that keep cropping up. And I fully intend to live another 10 or 15 years or longer...
Sue

suzyqueue | @suzyqueue | Sep 5, 2023

In reply to @bbeers "Hi, I'm waiting on the results of my Bronchoscopy . Dr. suspects MAC. I had TB..." + (show)

I would get another opinion. I was strong enough to fight it off too and ended up with MAC eating a 10 cm cavity in my upper left lung within 30 - 45 days of no treatment. I would see how the treatment does for you with side effects before taking the word from anyone that the treatment is worse. I find that untrue. The damage MAC can do is what's worse. Best of luck in your decision.

bbeers | @bbeers | Sep 5, 2023

In reply to @suzyqueue "I would get another opinion. I was strong enough to fight it off too and ended..." + (show)

I’m new to this website, so not sure how I respond to people who have responded to my post. Can you tell me what I need to do.

Thank you
Barbara

Rick | @rstel7272 | Sep 5, 2023

In reply to @reneemc "Anyone who can share effects of Arikayce?" + (show)

I know many people who did well for the full 12-18 months.
I only lasted 4 1/2 months, finally had to stop due to the excessive coughing during the last
7-14 minutes of treatment. Dr said stop since he was unaware of any partial treatments that
they do now.

bbeers | @bbeers | Sep 6, 2023

In reply to @sueinmn "You said "...I have read that once diagnosed with MAC you have 1 to 5 years..." + (show)

Thank you Sue for the information. Once I find out if I do have it I will have the conversation with my pulmonologist . The reason he told me that the side effects were worse than leviquin is because I gave him a hard time about taking that medication because of the known side effects. I've been fortunate in my life to have only had to take amoxicillin . He did tell me there was quite a bit of damage to my lung and he took out a lot of mucus so I'm expecting the worse and hoping for miracle.