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.

extracare808 | @extracare808 | Aug 31, 2022
In reply to @detsdum "New to this group, recently diagnosed with MAC, haven't started treatment yet. I am healthy, active,..." + (show)
@detsdum

New to this group, recently diagnosed with MAC, haven't started treatment yet. I am healthy, active, good immune system, never sick, take no meds. Thinking about something a few days ago. Evidently this bacteria thrives in warm moist air. For the last 25 years I have slept with a CPAP, exclusively inhaling warm moist air for 8-9 hours daily. I have now turned off the heat and humidifier and will discuss with the pulmonologist next week. Not suggesting the bacteria homesteaded because of the CPAP, but question the continued use of the humidifier now that MAC is diagnosed. Any CPAP users here that have thought about this and/or have received guidance from their doctors?

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Not sure about CPAP devices, but my docs at NJH absolutely advise against the use of humidifiers because of the potential for inhalation of NTM bacteria harbored in the small water particles generated by the humidifier.

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1 reply
detsdum | @detsdum | Aug 31, 2022
In reply to @extracare808 "Not sure about CPAP devices, but my docs at NJH absolutely advise against the use of..." + (show)
@extracare808

Not sure about CPAP devices, but my docs at NJH absolutely advise against the use of humidifiers because of the potential for inhalation of NTM bacteria harbored in the small water particles generated by the humidifier.

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Makes perfect sense to me.

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Mentor
Sue, Volunteer Mentor | @sueinmn | Sep 1, 2022
In reply to @sweethighland "Hi Sue, I always have this color sputum. As you know I have B.cepecia colonized and..." + (show)
@sweethighland

Hi Sue, I always have this color sputum. As you know I have B.cepecia colonized and wondering if I have infection from it. It shows 2+ in last culture. Doctors, both pul and ID are not treating 🙁 I cough when I have mucus. After airway clearance, cough tend to stop. I'm confused. I apologize for sending you my sputum, it is not a good sight to look at. I want to know if you have the same color.

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Sorry, I will repeat, we are not doctors and cannot make a diagnosis or treatment recommendation for anyone else. I believe your doctor recommended that you focus on symptoms - breathing, fever, shortness of breath - and concentrate on managing that, because eradication is unlikely. It is not useful to compare sputum colors between patients as we are all individuals with our own unique characteristics.

What I have found most useful is to listen to and trust my docs. Then let the rest go and live my best life. So, if I get a fever, more coughing, inability to clear mucus using airway clearance, increased shortness of breath, I follow my "emergency" plan - worked out with my primary, ID doc and pulmonologist. Otherwise, I just do my daily self-care (which may be different than yours) and go on with life.

For example, I have had some long days this week, tomorrow is my "rest day" - my alarm is shut off, and I will do limited strenuous activity, maybe even nap in the afternoon for a bit.

Have you and your doc worked out a plan of what to do if symptoms - fever, shortness of breath, inability to clear lungs or increased fatigue - happen?
Sue

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1 reply
sweethighland | @sweethighland | Sep 1, 2022
In reply to @sueinmn "Sorry, I will repeat, we are not doctors and cannot make a diagnosis or treatment recommendation..." + (show)
@sueinmn

Sorry, I will repeat, we are not doctors and cannot make a diagnosis or treatment recommendation for anyone else. I believe your doctor recommended that you focus on symptoms - breathing, fever, shortness of breath - and concentrate on managing that, because eradication is unlikely. It is not useful to compare sputum colors between patients as we are all individuals with our own unique characteristics.

What I have found most useful is to listen to and trust my docs. Then let the rest go and live my best life. So, if I get a fever, more coughing, inability to clear mucus using airway clearance, increased shortness of breath, I follow my "emergency" plan - worked out with my primary, ID doc and pulmonologist. Otherwise, I just do my daily self-care (which may be different than yours) and go on with life.

For example, I have had some long days this week, tomorrow is my "rest day" - my alarm is shut off, and I will do limited strenuous activity, maybe even nap in the afternoon for a bit.

Have you and your doc worked out a plan of what to do if symptoms - fever, shortness of breath, inability to clear lungs or increased fatigue - happen?
Sue

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Thank you very much Sue. No, I don't have a plan as you mentioned, but I will ask my pulmo when I see him this month. I have noticed that I easy get tired than before. I was well till April, 2021. The pulmonologist then did not know much about bronchietasis and I didn't receive proper instructions to mange the disease. Only last Oct, I was diagnosed after seeing a new pul. I'm new to all this and still learning. Thank you for your suggestions.

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molnarviolin@gmail.com | @mikemolnar45 | Sep 5, 2022

My MAI was detected accidentally on a CT scan for lung cancer. However, I was complaining about bronchitis for several years. A sputum sample verified the identification. I have been on 3 antibiotic since Jan 2022 and will continue for 18 months.
I raised Gouldian finches and owned an African Grey Timneh parrot. Go figure!
I am responding well to treatment.

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1 reply
Mentor
Sue, Volunteer Mentor | @sueinmn | Sep 5, 2022
In reply to @mikemolnar45 "My MAI was detected accidentally on a CT scan for lung cancer. However, I was complaining..." + (show)
@mikemolnar45

My MAI was detected accidentally on a CT scan for lung cancer. However, I was complaining about bronchitis for several years. A sputum sample verified the identification. I have been on 3 antibiotic since Jan 2022 and will continue for 18 months.
I raised Gouldian finches and owned an African Grey Timneh parrot. Go figure!
I am responding well to treatment.

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It's wonderful to hear that you are responding to the antibiotics.
I must ask, since birds can be a source of MAC, what did the docs have to say about continuing to have birds?
Sue

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molnarviolin@gmail.com | @mikemolnar45 | Sep 6, 2022

The docs NEVER asked me about possibly having birds. I got rid of them a little more than a dozen years ago. Intriguingly, I developed bronchitis and never made the connection, not until I recognized the Latin word AVIUM in MAI after it was detected. So, I made the connection on my own. When now I give this explanation to a physician they say, “Of course.”

Bummer.

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1 reply
Mentor
Sue, Volunteer Mentor | @sueinmn | Sep 6, 2022
In reply to @mikemolnar45 "The docs NEVER asked me about possibly having birds. I got rid of them a little..." + (show)
@mikemolnar45

The docs NEVER asked me about possibly having birds. I got rid of them a little more than a dozen years ago. Intriguingly, I developed bronchitis and never made the connection, not until I recognized the Latin word AVIUM in MAI after it was detected. So, I made the connection on my own. When now I give this explanation to a physician they say, “Of course.”

Bummer.

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We learned it years ago - diagnosed with asthma in the 1990's, the Internal Med doc asked - when I said we had parakeets, she also asked about others in the family - both my kids also have asthma (80% of my family has it, so we never thought about what makes it worse.) She told us the birds needed to go... Later as a young adult, my daughter had several large birds & her asthma flared again - lesson learned again...
Sue

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sue22 | @sue22 | Sep 15, 2022
In reply to @windwalker "@catherine123456, and @lainey, I have moved from two locations that I found myself always extremely sick...." + (show)
@windwalker

@catherine123456, and @lainey, I have moved from two locations that I found myself always extremely sick. I left Virginia because I always got pneumonia and mac there. I left Tucson Az because I got mac there too (Az is a known hot-bed for mac.) plus I had difficulty with the altitude. My oxygen levels increased by 6 by moving to sea level. I think Virginia was too humid in the summer and too damp and cold in the winter. After it rains there, the dampness just stays and makes for a lot of molding rotting leaves. In other words, lots of fungals. I now live near the ocean in S.C. Rainwater drains away quickly in the sandy soil so it doesn't feel damp. It does get humid here in the summer, but it is a short duration compared to many states. I have never felt better as far as having clear lungs and negative test results for mac & pseudomonas since I moved here. Moving here was the best thing I could have done for myself. I am still short of breath and energy though, but at least not coughing any longer.

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Hello @windwalker . I hope you are doing well.I was searching through old discussions to see if anyone was commenting on moving to reduce the risk of re-infection. I live in south central PA, but spend months each year in coastal SC low country ( Hilton Head). I am very concerned that this may be a risky ( hot humid with lots of brown water lagoons ) environment for me, but do not know how to assess if I can mediate the risk( shower filter, boil water, no water activities etc) or is it just in the air everywhere. It is a beautiful place, but we are deciding if we should sell our condo to keep me safe.
I see you said you moved to SC and feel it was a good idea. How did you determine it was a good place for a MAC/ BE patient? Thanks you very much if you can share on that topic.

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BlueSplashGirl/ Carolyn | @bluesplashgirl | Sep 16, 2022

Here is one testing place I have found and not yet researched:
https://mytapscore.com/products/mycobacterium-water-test

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