(MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS

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:

  1. Document Title Example:  Mayo Clinic Connect MAI/MAC Information
  2. 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
  3. 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!

KateMN

@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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@nick52 I need to clarfy what this is. The saline (sodium chloride) is by prescription only. In comes in small plastic individual dose vials that are certified to be sterile. It is then inhaled with a nebulizer. It is a fine mist that does not place liquid into your lungs. It is absorbed. The benefit of using this is that it keeps phlegm thin so that it is easy to cough up. Plus, mac & pseudomonas look for thick phlegm to colonize on. The saline helps to make the lungs inhospitable to mycobacteriums.

Liked by tdrell, jaejack

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@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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My doctor has me on 3% saline. Says she doesn't think my lungs could tolerate 7%.I'll be seeing her 8/31 and let everyone know how that goes.

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@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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I like "bacteria stinkers". Any other nasty names out there to share?

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@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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@alleycatkate, just want to re-iterate that saline thinned mucous comes up better than thick and sticky. It will help the aerobika do it's job.

Liked by alleycatkate

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@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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@alleycatkate So glad you are feeling better. I had the same experience and have had years of mac free sputem results.

Liked by tdrell, alleycatkate

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@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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@nick52 You may be confused with neti pot or something. Water is not added to the saline. It is prepackaged in sterile vials.

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@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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@marilyns Hello, and welcome to our group. Our saline discussion is totally different than Navage. The Navage is a devise used to rinse out your sinuses. (never rinse your sinuses with straight tap water because of microbes) The saline (sodium chloride) is inhaled into the lungs using a nebulizer, a small machine that turns the liquid into a fine mist. It is the same little compressor that people with asthma use to inhale albuterol. Did this help?

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@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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@flib How about Nasty Critters?

Liked by alleycatkate

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@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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@flib Interesting what your dr thought about your lungs not tolerating it. The 3% will help with thinning mucous. Maybe you can work your way up to 7% to help get rid of mac.

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@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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@nick52 …the saline that i get is a pharmaceutical product with a prescription. It is in tiny pippets sold at the pharmacy and is measured in single treatments, with a 7% dilution, and it is sterile. I know you can make your own but this is much simpler and with no worries.

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@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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@nick52
The prepackaged vials are steril for nebulizing, but if you are using a neti pot for sinuses I would use boiled water because I heard that Mac can still be in distilled water according to National Jewish.
Shari

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@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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Thank you

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@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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@pfists thank you very appreciated!

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@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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@mary1944 no appetite it could very well be a liver congestion.  Your liver can also have problem digesting the antibiotic med. it is very hard on the liver. No test exist to detect a congested liver. Try Milk Thistle to help your liver for at least 30 days.

 The best is Hübner Milk Thistle in liquid. You can use Clear Lungs from Ridgecrest for decongestion of the lungs. For weakness you may want to try Whey Protein ISOLATE it has to be an ISOLATE whey protein. Vials of Ginko biloba is good for energy and has

Windwalker sayGiseng if your health permit!  I will keep you in my prayer for you to find the best solutions.  Practice meditations to relax! Nick

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@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 can't find this.

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