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.

Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 10, 2018
In reply to @flib "Weight loss is one of my big concerns. I don't tolerate dairy well plus it increases..." + (show)
@flib

Weight loss is one of my big concerns. I don't tolerate dairy well plus it increases mucus...so I just ignore people who tell me to drink milk shakes. I have very little appetite, do best with breakfast, so eating is more a chore than a pleasure. Any suggestions would be welcomed.

Jump to this post

@flib It will be hard to put on weight as long as there is active infection going on. When my weight was rapidly falling off of me, I drank dairy- free powdered protein shakes. I would add frozen blueberries to it and put in in my Ninja blender. I would also add mayonaise, sour cream and butter to mashed potatoes to add calories. Eat many snacks. If you are totally animal product free, you will have to Google some ideas.

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alleycatkate | @alleycatkate | Jul 10, 2018

Hello All..I have come across an excellent article from National Jewish Health on how to reduce exposure to Non Tuburculous Mycobacterium. Talks about no humidifiers, no refrigerator door water, raising hot water heater temperatures...etc. Very instructive of ways to avoid this bacteria and worth a read. https://www.nationaljewish.org/getattachment/professionals/Newsletters/NTM-TB-Insights-Newsletter/NTM-TB-INSIGHTS-September-2015.pdf.aspx

REPLY
11 replies
Flib | @flib | Jul 10, 2018
In reply to @flib "Weight loss is one of my big concerns. I don't tolerate dairy well plus it increases..." + (show)
@flib

Weight loss is one of my big concerns. I don't tolerate dairy well plus it increases mucus...so I just ignore people who tell me to drink milk shakes. I have very little appetite, do best with breakfast, so eating is more a chore than a pleasure. Any suggestions would be welcomed.

Jump to this post

Thanks Terri. Today I drank almost two shakes, thought I'd burst. Honestly, I could eat a lettuce leaf and feel full. I'll have to see if I can find some science as to why so much weight is lost with an active infection.

REPLY
alleycatkate | @alleycatkate | Jul 10, 2018
In reply to @flib "Weight loss is one of my big concerns. I don't tolerate dairy well plus it increases..." + (show)
@flib

Weight loss is one of my big concerns. I don't tolerate dairy well plus it increases mucus...so I just ignore people who tell me to drink milk shakes. I have very little appetite, do best with breakfast, so eating is more a chore than a pleasure. Any suggestions would be welcomed.

Jump to this post

@flib Hi Flib....Dense foods like avocados. Lately when I am lazy I mix up "Garden of Life" Raw Protein Vanilla powder with a little cashew milk and tiny bit of banana in the blender. Great source of protein. Load up on Quinoa with sauteed veggies with olive oil. I like to start my day with Steel cut oats with a nut based milk, some frozen blueberries or fresh fruit and some crushed nuts on top. Beans and sunflower seeds are great toppers for your salads. When I get real lazy I pop in an Amy's vegan meal...non gmo and streamlined for any allergy or ethical preferences. Bon Appetite!! Go for the Dense Foods!! Oh...snacks of sliced apples (organic) with almond butter.

REPLY
Flib | @flib | Jul 10, 2018
In reply to @flib "Weight loss is one of my big concerns. I don't tolerate dairy well plus it increases..." + (show)
@flib

Weight loss is one of my big concerns. I don't tolerate dairy well plus it increases mucus...so I just ignore people who tell me to drink milk shakes. I have very little appetite, do best with breakfast, so eating is more a chore than a pleasure. Any suggestions would be welcomed.

Jump to this post

Thanks Nick. I'll order the milk thistle now and I'll try the tea.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 10, 2018
In reply to @flib "Weight loss is one of my big concerns. I don't tolerate dairy well plus it increases..." + (show)
@flib

Weight loss is one of my big concerns. I don't tolerate dairy well plus it increases mucus...so I just ignore people who tell me to drink milk shakes. I have very little appetite, do best with breakfast, so eating is more a chore than a pleasure. Any suggestions would be welcomed.

Jump to this post

@flib From what I have read, for some reason, mac causes malabsorbtion.

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 10, 2018
In reply to @flib "Weight loss is one of my big concerns. I don't tolerate dairy well plus it increases..." + (show)
@flib

Weight loss is one of my big concerns. I don't tolerate dairy well plus it increases mucus...so I just ignore people who tell me to drink milk shakes. I have very little appetite, do best with breakfast, so eating is more a chore than a pleasure. Any suggestions would be welcomed.

Jump to this post

@alleycatkate, Thanks for stepping up with these healthy suggestions!

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 10, 2018
In reply to @alleycatkate "Hello All..I have come across an excellent article from National Jewish Health on how to reduce..." + (show)
@alleycatkate

Hello All..I have come across an excellent article from National Jewish Health on how to reduce exposure to Non Tuburculous Mycobacterium. Talks about no humidifiers, no refrigerator door water, raising hot water heater temperatures...etc. Very instructive of ways to avoid this bacteria and worth a read. https://www.nationaljewish.org/getattachment/professionals/Newsletters/NTM-TB-Insights-Newsletter/NTM-TB-INSIGHTS-September-2015.pdf.aspx

Jump to this post

@alleycatkate There is a list posted on the Discussoon Board about all of the ways to avoid catching mac and avoiding reinfection. I feel like people are not visiting the Discussion board where there is a wealth of info. But, on the other hand, this post is a great intro for newcomers, & reminder for us 'old-timers'. I am delighted, Kate, that you are digging for info.!

REPLY
alleycatkate | @alleycatkate | Jul 10, 2018

@windwalker ...Thank you...I have never seen the Discussion Board...I will check it out!

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2 replies
ginak | @ginak | Jul 10, 2018
In reply to @alleycatkate "Hello All..I have come across an excellent article from National Jewish Health on how to reduce..." + (show)
@alleycatkate

Hello All..I have come across an excellent article from National Jewish Health on how to reduce exposure to Non Tuburculous Mycobacterium. Talks about no humidifiers, no refrigerator door water, raising hot water heater temperatures...etc. Very instructive of ways to avoid this bacteria and worth a read. https://www.nationaljewish.org/getattachment/professionals/Newsletters/NTM-TB-Insights-Newsletter/NTM-TB-INSIGHTS-September-2015.pdf.aspx

Jump to this post

@alleycatkate Thanks, very interesting read!

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