1. < MAC & Bronchiectasis

(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

Posted by Katherine, Alumni Mentor @katemn, Nov 21, 2011

I am new to Mayo online .. I was hoping to find others with .. MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and/or BRONCHIECTASIS. I found only 1 thread on mycobacterium accidently under the catagory "Lungs". I'm hoping by starting a subject matter directly related to MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) I may find others out there!

I was diagnosed by a sputum culture August 2007 (but the culture result was accidentally misfiled until 2008!) with MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and BRONCHIECTASIS. I am now on 5 antibiotics. Working with Dr. Timothy Aksamit at Rochester Mayo Clinic .. he is a saint to have put up with me this long! I was terrified of the treatment . started the first antibiotic September 3, 2011 ... am now on all 5 antibiotics for 18 mos to 2 years. Am delighted at the very bearable side effects!

I wrote on the 1 thread I found: If you google NON-TUBERCULOUS MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) you will learn a LOT about the disease. But PLEASE do NOT get scared about all the things you read .. that is what I did and nearly refused to do the treatment until after a 2nd Micomacterium was discovered! Educate yourself for "due diligence" .. but take it all with a grain of salt .. you are NOT necessarily going to have all the terrible side effects of the antibiotics! Good luck to you!

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January 2017 Update

One of our great Connect Members .. @Paula_MAC2007  .. had a wonderfully helpful idea that I wanted to share! Her idea .. as you read through the pages to gather information on our shared disease of MAC you can develop a personal "file cabinet" for future reference without the necessity of reading all the pages again!

If you have the "MS Word" program on your computer:
- Document Title Example:  Mayo Clinic Connect MAI/MAC Information
- Then develop different categories that make sense to you such as:  Heath Aids .. Videos .. Healthy Living .. Positive Thinking .. Baseline Testing and Regular Testing .. Antibiotics ..
Tips for
- As you read the pages .. copy/paste/save things of interest into that MS Word document under your preferred categories for future reference.

Then as you want to refer back to something in the future .. YEAH!  You have now created your own personal "file cabinet" on MAC/MAI!  Go to it!

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

heathert | @heathert | Feb 19, 2021
In reply to @anniepie "Hey Irene @irene5 -- I'm a fellow "drybie" too. Have been since a month after first..." + (show)
@anniepie

Hey Irene @irene5 -- I'm a fellow "drybie" too. Have been since a month after first treatment for NTM. (Had lots of phlegm -- yuck, LOL -- before treatment started). Even 10 days of sputum induction couldn't do it now. I have scans every 6 to 12 months and bronchoscopies every 6 to 12 months instead.
It sounds like things have been different since the Arikayce started! I will start it in 2 weeks I think.
All the best, Annie

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@anniepie I am also a drybie, just get the tiniest of bits that come up occasiionally. Take care Heather

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1 reply
glendamoseley1 | @glendamoseley1 | Feb 19, 2021
In reply to @heathert "@anniepie I am also a drybie, just get the tiniest of bits that come up occasiionally...." + (show)
@heathert

@anniepie I am also a drybie, just get the tiniest of bits that come up occasiionally. Take care Heather

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Not sure if this helps at all, I was always dry until my Dr had me hook my aerobika to my nebulizer when I nebulize 7% saline. It made a big difference!

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3 replies
cavlover | @cavlover | Feb 19, 2021
In reply to @glendamoseley1 "Not sure if this helps at all, I was always dry until my Dr had me..." + (show)
@glendamoseley1

Not sure if this helps at all, I was always dry until my Dr had me hook my aerobika to my nebulizer when I nebulize 7% saline. It made a big difference!

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Hi, started bringing up so much more stuff when I started using the nebulizer with 7% saline. The only thing I dread is using the flutter for 10 minutes after. My doc didn’t recommend the aerobica that hooks up to a nebulzer.

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cavlover | @cavlover | Feb 19, 2021
In reply to @sueinmn "The sputum culture is the "gold standard" test for NTM - mycobacteria are an extremely slow..." + (show)
@sueinmn

The sputum culture is the "gold standard" test for NTM - mycobacteria are an extremely slow growing bacteria. Once positive, the susceptibility to specific antibiotics must also be tested.
I too have wondered about PCR testing for mycobacteria, so I went wandering down the dark hole of research....again.
What I found is that is is being tried, but so far there hasn't been a comprehensive large scale study. The best research I have found so far is here: https://jcm.asm.org/content/53/3/930

If you can wade through it, the conclusions seem to be:
PCR testing has promise for diagnosing TB & NTM, but currently the application is limited because specific DNA sequences need to be tested for. So if a strain is known (eg M tuberculosis) the tests are pretty accurate, if not (eg M. avium, strain unknown), not so helpful.
More testing is needed to determine whether PCR testing is effective in identifying low levels of bacteria in the specimen. And side-by-side comparison of PCR and sputum assays of the same sample need to be compared.
Something to watch for in the future!
Sue

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Hi Sue, do doctors do a sputum test when diagnosed with bronchiectasis even if you don’t have any symptoms?

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1 reply
kathyhg | @kathyhg | Feb 19, 2021

I’m far from an expert in any of this but I had to respond to your post about using the aerobika (flutter) after the nebulizer. I recently started connecting the nebulizer to the aerobika and use them both at once. They are made to connect but I’d never thought of it before reading about it here. Besides saving time, I find that it is much more effective in clearing my lungs as I’m using the aerobika for much longer than I used to when I used it after the nebulizer.

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1 reply
Anonymous217382 | @anonymous217382 | Feb 19, 2021

Hello all. My lung CT with contrast somehow came back as normal...well, as always "Hyperlucent Lungs." Will the doctors still do a test for MAC I wonder? Something is causing this condition. Can't believe nothing showed up. Thank-you, and hope everyone has a pleasant weekend.

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cavlover | @cavlover | Feb 19, 2021
In reply to @kathyhg "I’m far from an expert in any of this but I had to respond to your..." + (show)
@kathyhg

I’m far from an expert in any of this but I had to respond to your post about using the aerobika (flutter) after the nebulizer. I recently started connecting the nebulizer to the aerobika and use them both at once. They are made to connect but I’d never thought of it before reading about it here. Besides saving time, I find that it is much more effective in clearing my lungs as I’m using the aerobika for much longer than I used to when I used it after the nebulizer.

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My flutter does not connect to my nebulizer. My doctor doesn’t use the aerobica.

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1 reply
irene5 Irene Estes | @irene5 | Feb 20, 2021
In reply to @anniepie "Hey Irene @irene5 -- I'm a fellow "drybie" too. Have been since a month after first..." + (show)
@anniepie

Hey Irene @irene5 -- I'm a fellow "drybie" too. Have been since a month after first treatment for NTM. (Had lots of phlegm -- yuck, LOL -- before treatment started). Even 10 days of sputum induction couldn't do it now. I have scans every 6 to 12 months and bronchoscopies every 6 to 12 months instead.
It sounds like things have been different since the Arikayce started! I will start it in 2 weeks I think.
All the best, Annie

Jump to this post

@anniepie Good luck to you. To “help” the Arikayce I use my Breo prior to treatment. Irene

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irene5 Irene Estes | @irene5 | Feb 20, 2021
In reply to @anniepie "Hi people, how long do you all have to wait for results from your sputum tests..." + (show)
@anniepie

Hi people, how long do you all have to wait for results from your sputum tests or bronchoscopies to see if you still have NTM in your lungs ?
I've often waited 8 or 9 weeks to get the results. It drives me crazy waiting so long !
(And it sucks too -- instead of doing the 100 year old dish-culturing tests they do in Australia, they could do Real-time PCR tests with a much shorter waiting time for results. They are not very kind to us !)

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@anniepie Some results come back within a few days, but MAC generally takes several weeks for culture results to be posted. Irene

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cmi | @cmi | Feb 20, 2021
In reply to @anniepie "Hi people, how long do you all have to wait for results from your sputum tests..." + (show)
@anniepie

Hi people, how long do you all have to wait for results from your sputum tests or bronchoscopies to see if you still have NTM in your lungs ?
I've often waited 8 or 9 weeks to get the results. It drives me crazy waiting so long !
(And it sucks too -- instead of doing the 100 year old dish-culturing tests they do in Australia, they could do Real-time PCR tests with a much shorter waiting time for results. They are not very kind to us !)

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My results on sputum from Bronchoscopy done October 2, 2020...were given to my pulmo & id docs in FEBRUARY 2021. I had given up figured some lab rat (overwhelmed during covid pandemic) dropped, lost, or flushed my sputum culture inadvertently. My docs were diligent in requesting the lab (somewhere in Texas) to give the sensitivity results...the AFB came back lighting quick so they knew I had MAC...it was the sensitivity that was the hold up. End of story was...in February they find out that I have 2 species of Avium camped out in my lungs. Lucky for me..they are not resistant to Azithromycin...so I continue on the 3 drugs. Four months is a long time to wait...now I’m curious about PCR...will ask my docs next time they culture my sputum. Not looking forward to that because I am totally bone dry...have no idea how they propose to get another sample other than by Bronchoscopy.
Best wishes for all of us.
Regina

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