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.

sadies1mom | @sadies1mom | Jul 3 7:36pm

In reply to @rstel7272 "I think it is important that we discuss the side effects of the potent pharmaceuticals we..." + (show)

I agree. I have not taken the antibiotics. I recently had my second bronchoscopy in two years, with the pathology being sent once again to national Jewish Hospital. They will do the sensitivities test that I guess testS The bacterial load among other things to determine which of the current medications Might work best for me I will discuss with my Doctor Who I very much Trust whether it's worth the risk, because I'm stable. I'm sorry I have this disease the pain in the butt

sadies1mom | @sadies1mom | Jul 3 7:51pm

In reply to @squire123 "Ponte Vedra Beach, just way south of Jacksonville. Mayo Clinic still overwhelmed with excovid patients, can't..." + (show)

I am Floridian also and I was so surprised about mayo Jacksonville since I am a patient here I I have a patient number. They will not take a patient with Mac disease. Apparently they don't have enough doctors who are specialized in it. I did go to Mayo Clinic in Minnesota. You can get an appointment there; but it's inconvenient. I've been treated by a Doctor Who was at Vanderbilt and is now at Saint Thomas in Nashville who spent his first 10 years in Minnesota mayo. He is really exceptional. But it was an infectious disease doctor in Tampa who was so fantastic at giving me so many tips for treating the disease . Within one hour she was able to tell me probably 20 things to do for myself – practical things that are extremely effective. So the doctor does matter.

cwal | @cwal | Jul 4 6:07am

In reply to @rstel7272 "After symptoms reappeared, multiple tests for Mac and C were negative then an oral sputum RESPIRATORY..." + (show)

Aspergillus grew in a regular Respiratory culture? I thought it took much longer for fungi to grow?

db5210120683 | @db5210120683 | Jul 5 8:58am

In reply to @sadies1mom "I am Floridian also and I was so surprised about mayo Jacksonville since I am a..." + (show)

I , like you , live in the Tampa area. I , like you, was unable to get an apt. with Mayo. in Jacksonville. Can you share with me who the Dr. was you saw in Tampa? So are you living in Tampa and travel to Nashville? I have been recently diagnosed with MAC and am terified of starting the anti-biotics. Thanks for any help you can share.

lindabourassai | @lindabourassai | Jul 5 11:18am

In reply to @sadies1mom "I agree. I have not taken the antibiotics. I recently had my second bronchoscopy in two..." + (show)

I also went to National Jewish Hospital and they did the test to determine which antibiotic work for me. This is very useful information because if you get any other bacterial infection the report will inform your current doctor which antibiotic she/he should prescribe.

nick52 | @nick52 | Jul 5 11:28am

In reply to @db5210120683 "I , like you , live in the Tampa area. I , like you, was unable..." + (show)

I have been diagnose with Mac in 2013 but the Mac wasn’t active and idn’t cause any problem since. My infectiologue (infection specialist) said we don’t need to put you on the antibiotic cocktail. If you start to have problem with the Bacteria then we will think about it. If the bacteria isn’t giving you to much problem you might think twice. I’m in NB Canada

Sue, Volunteer Mentor | @sueinmn | Jul 10 4:31pm

DON'T MISS THIS WEBINAR! Dr Pamela McShane provides a very visual explanation of how this is true, along with a great graph of the 4 parts of airway clearance, and how each feature benefits. Well worth the 1 1/2 hours to watch it!

mariegrace | @mariegrace | Jul 24 9:03am

In reply to @sadies1mom "I am Floridian also and I was so surprised about mayo Jacksonville since I am a..." + (show)

Can you share the practical things you are doing that are effective??
Thank you.....all the best
Marie

Nancy C | @nac1 | Jul 24 5:03pm

In reply to @sueinmn "DON'T MISS THIS WEBINAR! Dr Pamela McShane provides a very visual explanation of how this is..." + (show)

Sue, what type of nebulizer do you use and where can you buy it?
Thanks,
Nancy C

mariegrace | @mariegrace | Jul 25 8:39am

All the information posted is valuable. Everyone is different and their treatment course will be different.
I dont find information "scary" so please do not discourage posting of experiences with this disease.

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