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.

Jane S. Brown | @macjane | Jul 11, 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.

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Thank you.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jul 11, 2018
In reply to @alleycatkate "@windwalker ...Thank you...I have never seen the Discussion Board...I will check it out!" + (show)
@alleycatkate

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

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@alleycatkate the “discussion board” to which @windwalker refers is the home page or main page of the MAC & Bronchiectasis group here: https://connect.mayoclinic.org/group/mac-bronchiectasis/

When you go to the Group’s homepage, you will see all the topics that have ever been started by members. The most recently active discussions are listed first. Simply click VIEW MORE as you scroll down to see all the topics. The Group page is a fabulous archive of all the discussions and a treasure trove of information.

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nick52 | @nick52 | Jul 11, 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.

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@flib it sounds like a congestive liver! Try Milk Thistle!Nick

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nick52 | @nick52 | Jul 11, 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

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@windwalker sorry I can’t find that discussion Board! Not too good with this site but i’m learning lol Nick

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 12, 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

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@nick52, if you scroll to the very top of this thread page you will see highlighted in Blue Letters; 'Mac and Bronchiectasis Group', a page should pop up with the picture of two women facing each other on the cover page. Underneath that image is a blue tab bar. The first tab says 'Discussion'. I would like for everybody to explore this site more so that you are exposed to more resources.

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alleycatkate | @alleycatkate | Jul 12, 2018

Hello...Came across an article on Saline as an inhospitable host to MAC. This appears to me to support what Terri @windwalker talks about when she suggests (or her Dr suggests) that all with MAC should be nebulizing saline. I also interpret it to support her suggestion of a salinity solution of 7% (and that a lower percentage of saline is not effective on M Avium. (minimum of 6% needed) Wish I had medical training and could navigate these articles better. It is published by National Institute of Health. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4850692/ Would appreciate any input on this. Thanks. Kate

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33 replies
mary1944 | @mary1944 | Jul 12, 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

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I'm having problems with vomiting and weakness. I couldn't take Rifampin because I was vomiting and now on moxifloxacin and vomiting again. Have no appetite. Also on clarithromycin and ethambutol. Any suggestion

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pfists | @pfists | Jul 12, 2018
In reply to @alleycatkate "Hello...Came across an article on Saline as an inhospitable host to MAC. This appears to me..." + (show)
@alleycatkate

Hello...Came across an article on Saline as an inhospitable host to MAC. This appears to me to support what Terri @windwalker talks about when she suggests (or her Dr suggests) that all with MAC should be nebulizing saline. I also interpret it to support her suggestion of a salinity solution of 7% (and that a lower percentage of saline is not effective on M Avium. (minimum of 6% needed) Wish I had medical training and could navigate these articles better. It is published by National Institute of Health. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4850692/ Would appreciate any input on this. Thanks. Kate

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Yes its one of the easiest methods to keep our lungs clean.
Have you heard about the men that worked in salt mines, their lung conditions cleared up.
I actually visited a hymalayan salt cave created here in Minneapolis.

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boomerexpert | @boomerexpert | Jul 12, 2018
In reply to @alleycatkate "Hello...Came across an article on Saline as an inhospitable host to MAC. This appears to me..." + (show)
@alleycatkate

Hello...Came across an article on Saline as an inhospitable host to MAC. This appears to me to support what Terri @windwalker talks about when she suggests (or her Dr suggests) that all with MAC should be nebulizing saline. I also interpret it to support her suggestion of a salinity solution of 7% (and that a lower percentage of saline is not effective on M Avium. (minimum of 6% needed) Wish I had medical training and could navigate these articles better. It is published by National Institute of Health. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4850692/ Would appreciate any input on this. Thanks. Kate

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You got it right...this study found 3 levels of salt (salinity) resistance (from least to most resistant): Group 1 includes “salt-sensitive” species (growth up to ≤3 % salt); Group 2 includes the “salt-intermediate” species (growth up between to 4 and 6 % salt), while Group 3 includes “salt-resistant” species (growth up to >6 % salt)

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