(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.

Katherine, Alumni Mentor | @katemn | Feb 15, 2017

Hello Posted by @laneyk, 1 day ago
Hello everyone. I have a praise report. I am 6 months off the meds and got sputum results today. No bacteria found. I am feeling so much better than I was 2 years ago. There is light at the end of the tunnel and life after MAC. I wish everyone could have the results I have had with this disease. I have not had the nerve to ask about reoccurrence, but I think I will in March when I see the doctor again.

Hello Elaine, I am answering you on the Main MAC & BRONCHIECTASIS page .. because EVERYONE needs to see your wonderful news!! I am so happy for you .. now just live your life .. don't worry about what MIGHT happen .. just delight in what IS!! Be in the here and now .. be joyful! We will be joyful with you! Sending you a hug! Katherine

milindohope83 | @milindohope83 | Feb 16, 2017

God Bless you dear, let the battle be done!!! Lots of love your way. Anita

milindohope83 | @milindohope83 | Feb 16, 2017

You have fought the good fight. My prayer are with all who struggle to be well. Best to you and your family1 Anita

Terri Martin, Volunteer Mentor | @windwalker | Feb 16, 2017

In reply to @katemn "@maryjo2sell, Maryjo, thank you so much for the great info! Where did you find the best..." + (show)

Hi! Are you talking about Dr. Leventhal?

maryjo2sell | @maryjo2sell | Feb 16, 2017

Hi all. Mary Jo here. Now going to Mayo Florida next week. Had an appointment today but my grand daughter thoughtfully gave me strep throat so had to cancel for a week! It has been so quiet on the site I thought all had been cured! Just want to add that we can put all sorts of stuff in our home for filtration, but still have to exist outside of our bubble. Fountains, misters, sprinklers, anything with water outside contains these mycobacterium. You can avoid some contact- don't sit under "cooling misters", give lots of "leeway" to fountains, go the other direction if sprinklers are running, but the main thing we can do is try to exercise, eat right, gets lots of rest, avoid stress (Haha) and try to build up our immune systems. Right now mine is definitely down as I have had shingles and then strep. Hope Dr. Leventhal has some magic to work on me next week 🙂 Happy, healthy thoughts to all. Stay positive even though sometimes that is very hard.

Terri Martin, Volunteer Mentor | @windwalker | Feb 16, 2017

In reply to @maryjo2sell "Hi all. Mary Jo here. Now going to Mayo Florida next week. Had an appointment today..." + (show)

Hi Mary Jo. My goodness ,it sounds like you have been through the wringer girl! You got a double whammy with two things that can make you feel pretty crummy. I hope Dr. Leventhal can get you squared away. I will be curious to know what you think of him. I will be seeing him in June for my six month check-up. Hang in there chicky! Hugs -Terri M.

maryjo2sell | @maryjo2sell | Feb 16, 2017

In reply to @maryjo2sell "Hi all. Mary Jo here. Now going to Mayo Florida next week. Had an appointment today..." + (show)

Thanks Terri- It has not been one of my better months. But I always remember that others are worse off than I( well at least I try to think that way!). My grand daughter lives with us for now and is 5 years old. She is a joy even with all the diseases:). I am really looking forward to my appointment next week. I laughed when I called to see if Mayo had received my medical history from Duke- they said "yes, all 79 pages of fax". Yikes! That is scary! Have a good day.

tessie | @tessie | Feb 16, 2017

In reply to @katemn "Hello Posted by @laneyk, 1 day ago Hello everyone. I have a praise report. I am..." + (show)

Katherine, congratulations and good work! I'm trailing behind you - June 10 presumed is my last day of MAC meds. I struggle with bouts of diarrhea once in awhile, and am beginning to wonder if, indeed I'm able to continue with meds. I listen to my body, took a day off meds, afterward right back on them following doc's instructions. What are we doing, or what have we done to our stomach thru all this? I think eating snack sunflower seeds/almonds isn't agreeing with me. I believe my cramps happened with raw food. I'm hoping to kick the disease in the butt - Lord love us.

Katherine, Alumni Mentor | @katemn | Feb 16, 2017

In reply to @katemn "Hello Posted by @laneyk, 1 day ago Hello everyone. I have a praise report. I am..." + (show)

Hi @tessie, I think that part 'listening to our bodies' is SO important! We have been living in those bodies a LOT longer than any doctor has been treating us .. but as you said 'then right back following doctor's instructions'! Can't think of a better combo! It is smart of you to think through cause and effect .. raw food .. stomach cramps. That is exactly how I figured out my migraine triggers .. watching cause and effect.

In terms of the diarrhea .. have you seen any cause and effect there? For me personally I found 'regularity' by taking daily FIBERCON .. I took a cheaper generic form and that really helped me a lot .. twice a day worked for me. I am assuming you are taking a 30 to 50 billion probiotic daily for stomach health? Tessie, with your great attitude you will indeed "kick those critters in the butt"!! Hugs to you! Katherine (love that visual!)

boomerexpert | @boomerexpert | Feb 16, 2017

In reply to @katemn "Hello Posted by @laneyk, 1 day ago Hello everyone. I have a praise report. I am..." + (show)

Wow...what a milestone! Phew! Very happy for you in case you can't tell...!

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