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Mentor

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.

Rick | @rstel7272 | Sep 7, 2023
In reply to @sueinmn "You said "...I have read that once diagnosed with MAC you have 1 to 5 years..." + (show)
@sueinmn

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

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During my 5 year journey, As Dr's have suspected some other cause, I have been tested literally head to toe and I am lucky that I have no other issue besides a bad lung. I look forward to a long retirement at a bit slower pace but still active.

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dorma | @dorma | Sep 7, 2023

Update; I really like the new lung doctor. I had stopped taking the 3 meds about 2 weeks before I went, and he was pleased with that. He said he was amazed that I took them for 14 months. He will do another lung CT scan, and bronchoscopy in January. I really hope I don't have to start over.

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Mentor
Sue, Volunteer Mentor | @sueinmn | Sep 19, 2023

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):


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

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1 reply
shar1120 | @shar1120 | Sep 25, 2023
In reply to @nana43 "Hi MaryJane! The first few months were rough for me on the Big 3. I lost..." + (show)
@nana43

Hi MaryJane!
The first few months were rough for me on the Big 3.
I lost a lot of weight initially but holding steady @ 105 now( 13 months on treatment). I found that taking meds at night helped with nausea and other side effects. I also started morning fruit smoothies which helped with weight gain. I also take probiotics every morning which helps!
The 6 month sputum culture is standard. If you obtain culture conversion -(No NTM detectable) at that juncture, the clock starts and you are one year from that point. I attained in November of last year.
I hope this helps!
Dee

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What are the Big 3 you all talk about? Just curious

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nana43 | @nana43 | Sep 25, 2023

The big 3 antibiotics-
Azrithtomycin, rifampin, &
Ethambutol.
Standard treatment for MAC

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lauraadam2425 | @lauraadam2425 | Sep 26, 2023

The best thing for me belonging to this support group is I am not alone! I realized how many of us are out there and we are all different. Some can take the meds, some can't. Some techniques work for some and not others. I like the fact that everyday I learn something new. Thank you all for your kindness and encouragement.

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Mentor
Sue, Volunteer Mentor | @sueinmn | Oct 13, 2023

Yet another reason why MAC/NTM is different for everyone.

This small, new study was just presented at an NTM conference this week.
https://www.medpagetoday.com/meetingcoverage/chest/106752
The three specific organisms identified in this article are as common in the environment as NTM, and are commonly found in the nose, mouth and respiratory tract. They do not require antibiotic treatment unless they are causing specific infection, but common antibiotics do eliminate them.

What is the takeaway?
First, more research is, of course, required to see if this holds across a larger and more diverse population - the study was in South Korea.
Second - and to me most important - the billions of bacteria in our body can be both helpful and harmful. The three specific bacteria identified in this study are common in the human body, and infrequently cause illness that requires treatment. Overuse of antibiotics kills off these and other non-lethal bacteria or renders them antibiotic resistant. This is why it is so important not to use them unless absolutely necessary.

Yet another piece in the puzzle that is MAC/NTM.
Sue

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liangni1 | @liangni1 | Oct 14, 2023

Thank you Sue.This information is very helpful and important.

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Mentor
Sue, Volunteer Mentor | @sueinmn | Feb 10 12:53pm

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:

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1 reply
Mentor
Sue, Volunteer Mentor | @sueinmn | Mar 2 11:40am

Here is another point of view on Bronchiectasis and infections:
https://connect.mayoclinic.org/discussion/pulmonologist-versus-infectious-disease-dr/?pg=5#comment-1025910
I especially liked the comment: "Bronchiectasis is a chronic disease that forces you to live with compromises, whether you treat it or not. There are fewer and less onerous compromises if you treat it. My vision and hearing, as well as my susceptibility to muscle-related injuries, have been negatively impacted by my meds over the last decade, but I can breathe. Breathing is better than the alternative."

Nobody LIKES to take antibiotics, but sometimes it is necessary. The alternative - no longer breathing - does not appeal to me!
Sue

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