(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.

rvan | @rvan | Dec 19, 2020

In reply to @colleenyoung "Welcome, @rvan. Have you been diagnosed with MAC or do you suspect you might have it?" + (show)

I suspect I might , will know better after a bronchoscope in the new year 🙁

irene5 Irene Estes | @irene5 | Dec 19, 2020

In reply to @jr2366 "Hi Irene so I saw a pulmonologist since last December I was sick with pneumonia I..." + (show)

@jr2366 You are never alone with this group Jennifer! Lung nodules with nodular MAC are common and a sign of inflammation. The Arikayce plus the BIg 3 ( 2 in my case) has resolved my largest nodule. Irene

Jennifer | @megan123 | Dec 19, 2020

In reply to @jr2366 "Thank you so much I was just told filtered water from my refrigerator is good as..." + (show)

@jr2366..Hi there...please be careful drinking water from your fridge..it holds slot of MAC bacteria, including Absessus..if you are filtering make sure you have a 0.2 micron filter attached..I’d still be nervous to drink water from my fridge

ginak | @ginak | Dec 20, 2020

In reply to @jr2366 "Thank you so much I was just told filtered water from my refrigerator is good as..." + (show)

@jr2366 Hi Jennifer, about the filtered water from fridge. There was a discussion on here a while back about this with research articles that state, filtered water from fridge is NOT safe, no matter how much you change your filters. I’m sorry I don’t know how to go back and find it, maybe someone else can jump in who remembers. Because the fridge holds water in the line close to the motor which keeps it at an optimum temperature to colonize.
Also, the filters have to be able to filter to .2 micros, (I think). The discussion also included water coolers and coffee makers like Keureg and such. I hope other members who remember this discussion will add to this post.
Perhaps things have changed in the past 4 years and I haven’t kept up to date.
Gina

ginak | @ginak | Dec 20, 2020

In reply to @jr2366 "Hi Sue I was sick back in December 2019 and every X-ray and ct scan I..." + (show)

@jr2366 Your story sounds a lot like mine. Except I had that lung surgery at NYU to cut out the nodule and do the biopsy. It was very painful, especially every time I coughed! That’s how MAC/MAI was diagnosed. I’ve never gone on any meds because my yearly CT scans show the nodules “wax and wane” and are relatively small, also, aside from the cough, I have no symptoms from MAC.

lindam272 | @lindam272 | Dec 20, 2020

@jr2366 You can search this site for keywords by clicking on the magnifying glass at the top of the page and typing the word you want to search. It will bring up all times it was mentioned.
Filtered water from the refrigerator is one of the highest sources of NTM because of the warmth the mechanism in the refrig generates to bring you cold water and ice. I never drink anything but bottled water no matter where I am and I never use ice anymore.
Potting soil is another high source of NTM so I always wear a mask now when potting plants. There are many sources of information by Googling NTM, MAC, bronchiectasis, etc. This forum is an incredibly good source and will lead you to other sources as well by reference. There were just 19 pages when I found this connection. So grateful for everyone who has provided information! @lindam272

jr2366 (Jennifer) | @jr2366 | Dec 21, 2020

In reply to @colleenyoung "Welcome, @rvan. Have you been diagnosed with MAC or do you suspect you might have it?" + (show)

Colleen I’ve been diagnosed with MAC

jr2366 (Jennifer) | @jr2366 | Dec 21, 2020

In reply to @ginak "@jr2366 Hi Jennifer, about the filtered water from fridge. There was a discussion on here a..." + (show)

Thanks Gina I guess my Kerig is a no no

jr2366 (Jennifer) | @jr2366 | Dec 21, 2020

In reply to @ginak "@jr2366 Your story sounds a lot like mine. Except I had that lung surgery at NYU..." + (show)

So gina I’m now on the Arikayce praying this works after 1 year to 18 months . I’m on day 6 ugggh so long to go . So Gina I already had a lung biopsy that was painful also why did they do surgery? And did you do any biopsies before your surgery as well I’m just trying to see why you had the surgery

lynn55 | @lynn55 | Dec 21, 2020

In reply to @jr2366 "Hi Sue I was sick back in December 2019 and every X-ray and ct scan I..." + (show)

Hi Jennifer, Sounds like you have had a rough year. It does get easier but there is no denying life is different. I was first diagnosed with COP in 2014 following a diagnosis of pneumonia that did not respond to antibiotics. A CT scan showed opacities and nodules. A bronchoscopy with cultures found MAC. Prednisone calmed my lungs but showed extensive bronchiectasis. Over the last 6 years I’ve had a PICC line in for treatment of MAI and been on the big 3 for 2 years for MAC. Right now my pulmonologist and ID doc are doing the wait and see approach as I feel good. Still have some nodules but they are so much smaller. So some advice. I am a rehab nurse and learned early on exercise was so important for my lungs and wellbeing. I do breathing exercises everyday and 30 minutes on a stationary bike. 2 walks a day. So far my lung function is normal and my goal is to keep it there. Learn your body and follow your instincts if you feel something is off. Good luck with the medication. You are not alone.