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 | Jul 26 9:03am

In reply to @cwal "Aspergillus grew in a regular Respiratory culture? I thought it took much longer for fungi to..." + (show)

(1,3)-Beta-D-Glucan (Fungitell) - ARUP Lab Test Directory
ARUP Laboratories
https://ltd.aruplab.com › Tests › Pub
The Fungitell test is indicated for presumptive diagnosis of fungal infection and should be used in conjunction with other diagnostic procedures.

Must be ordered by your pulmonologist. Test can be preformed on sputum or blood, usually both. Further tests done on a bronchosopy sample can also be done. They want to be certain because the treatment is harsh and expensive and insurance required

Sue, Volunteer Mentor | @sueinmn | Jul 26 9:46am

In reply to @nac1 "Sue, what type of nebulizer do you use and where can you buy it? Thanks, Nancy..." + (show)

Hi Nancy, I hesitate to recommend a single nebulizer because everyone develops their own preference based on their life and severity of their ailment.
For many years, at home I have relied on the cheap Medicare covered machine by Pari Vios - I call it the "big green machine" because mine happens to be that color. I am on my 3rd one in over 20 years. Pluses - inexpensive, powerful, reliable. Minuses - big, relatively noisy and not easy to take along.
My current preferred lightweight, portable compressor nebulizer is the DeVilbiss Traveler with battery pack. Pluses - light, reliable, long battery life, can plug into auto too. Minuses - not as powerful, compressor gets weaker after 3 years or so depending on use.
Handheld, mist-type nebulizer - None currently. The only one I ever liked is discontinued. Most of the ones for sale are not reliable, or not suitable for 7% saline, or begin to leak quickly.

One thing to remember, whichever nebulizer you buy, read the manual about changing the filters - then change them MORE often, because multiple daily uses they need it sooner. My daughter killed one this winter by not doing it because a clogged filter taxes the compressor.

What is everyone else's go-to nebulizer?

kdiago1564 | @kdiago1564 | Jul 26 10:16am

Hi all,

Reading through the threads I have a question about the number of bacteria colonies and how that aids in determining whether or not to undergo antibiotic treatment. I am currently being treated at NYU Langone under the care of Dr. Addrizzo-Harris. I did sputum induction and the AFB smear was negative but the culture came back positive for MAC/MAI. I know a few of you have mentioned having sent the culture to NJH so they could analyze the number of bacteria which does logically seem like an important piece of information in all this.

My questions are:
- Does anyone know if NYU Langone can perform that level of analysis in their labs?
- Do you have to request this before you have your sputum induction appointment?
- Does this need to be approved by insurance or does insurance not cover this?
- How is this coordinated between the labs?

Sue, Volunteer Mentor | @sueinmn | Jul 26 10:29am

In reply to @kdiago1564 "Hi all, Reading through the threads I have a question about the number of bacteria colonies..." + (show)

Hello, as you know, we are simply other patients like you.
As to your questions, if I wanted to know, I would definitely call the clinic. My insurance has always covered all the tests ordered by pulmonology, but it may depend on youd policy - that is a question for your carrier.
Coordination - if your sample goes to Langone and they do not do the test you need, they ship it to NJH and the results are reported back to them. Mine take a circuitous route in my state - clinic lab to state dept of health lab (as mycobacteria can indicate TB which is a reportable public health risk) to NJH. And the results are eventually reported back to my doc and me on the patient portal. (This is not uncommon - few labs do every possible test anymore - many are routinely sent off to specialty labs. A few examples tissue biopsies certain cancers, risk panels that include metabolic tests for some illnesses.)

Nancy C | @nac1 | Jul 26 11:58am

In reply to @sueinmn "Hi Nancy, I hesitate to recommend a single nebulizer because everyone develops their own preference based..." + (show)

Thanks Sue! I think I recall that you used a nebulizer that you sterilized by putting it into a microwave. I use a Phillips Respironics that has a plastic tube leading to a mouthpiece that sprays a .7 mist. I have to sterilize with hot water and 99% anti bacterial soap. It takes a lot of time. I want something easier. Any recommendations?

kdiago1564 | @kdiago1564 | Jul 26 12:32pm

In reply to @sueinmn "Hello, as you know, we are simply other patients like you. As to your questions, if..." + (show)

Sue,

Thank you for taking the time to respond to each of my questions. I have reached out to NYU to ask what their process is for colony count and whether they obtain that info somehow.

So interesting how all the labs coordinate for all the various compliance reasons in addition to getting the results that are necessary!

Have a great weekend,
Kate