(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.

Jo Ann K | @jkiemen | Sep 4, 2018

@honeybtorres I would definitely be seeing a pulmonologist and Infectious Disease Specialist. What meds were you getting

beverly1945 | @beverly1945 | Sep 4, 2018

In reply to @ginak "@vestafit Hi, I’m in NYC also. What Dr were you seeing? I see Dr. Kamelhar. He..." + (show)

I see a Pulmonoligist at NYU Dr Adams I adore him I worked at NYU are you going on Oct 31 to the conference about NTM .What are the exersizes ?

Terri Martin, Volunteer Mentor | @windwalker | Sep 4, 2018

In reply to @beverly1945 "I see a Pulmonoligist at NYU Dr Adams I adore him I worked at NYU are..." + (show)

@beverly1945 Hi Beverly. I just want to remind you to type in an @name when you reply to a post. Look at how I started my text to you here. You will notice that others are doing it and the @name appears in blue. This will connect your comment to the conversation and your reply will reach the person you are talking to. Thank you, and I hope you are feeling alright tonight.

beverly1945 | @beverly1945 | Sep 4, 2018

In reply to @windwalker "@beverly1945 Hi Beverly. I just want to remind you to type in an @name when you..." + (show)

@windwalker888 like this ?

Terri Martin, Volunteer Mentor | @windwalker | Sep 4, 2018

In reply to @beverly1945 "@windwalker888 like this ?" + (show)

@beverly1945 Yes! Like that.

Terri Martin, Volunteer Mentor | @windwalker | Sep 4, 2018

In reply to @heathert "Hi all, I just found this article about garlic killing bacteria in the lungs. Very Interesting,..." + (show)

@heathert I too had read something recently about the antibacterial properties of garlic. I bought a bottle of garlic tablets two weeks ago, as I would have trouble fitting it into my daily diet. I did roast a bunch of cloves last week with a roasted chicken. Man! They were good!

heathert | @heathert | Sep 5, 2018

In reply to @windwalker "@heathert I too had read something recently about the antibacterial properties of garlic. I bought a..." + (show)

@windwalker I have read that you should eat it raw but squashed producing Allicin. Lets just say that I often smell of garlic now.

heathert | @heathert | Sep 5, 2018

Hi all I have just started inhaling saline 7%. I have been told to use 4ml, nearly a teaspoon, saline which only takes a few minutes to inhale. Is it the same for all of you on saline?

Terri Martin, Volunteer Mentor | @windwalker | Sep 5, 2018

@heathert Yes, mine is 4ml. I am about to do mine!

Terri Martin, Volunteer Mentor | @windwalker | Sep 5, 2018

Can I please vent? I am feeling REALLY pissed off right now. My husband volunteered our services as a babysitter for our neighbors behind us. The girls came over ages 6 and 9. They brought the cold virus into my home and now I am sick. I am praying it doesn't land me in the hospital because it usually does. Then, he turned around and volunteered us again for tomorrow night!!! I am going to insist that HE go over to their house and watch the kids. I had been doing so good for the past year and a half, that I think he has forgotten what happens to me when I get around sick people. Grrrr!

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