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(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.

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Terri Martin, Volunteer Mentor | @windwalker | Mar 1, 2017
In reply to @katemn "Dear All, just found a really neat website that I'd like to share .. check it..." + (show)
Profile picture for Katherine, Alumni Mentor @katemn

Dear All, just found a really neat website that I'd like to share .. check it out and maybe incorporate some of it into your life? I really liked it! Hugs to all! Katherine

New Year’s Resolution Challenge: Cultivate Mindfulness .. be sure to click one the 4 items in blue
We challenged you to cultivate mindfulness through:
Morning Gratitude
Yoga
Meditation
Self-Compassion
https://connect.mayoclinic.org/discussion/live-qa-new-years-resolution-challenge-cultivate-mindfulness/

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<br><br><br><br><br>All good stuff! Thanks Katherine!<br> <br><br>

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lindam272 | @lindam272 | Mar 1, 2017
In reply to @katemn "Pamela, I reposted this is MAC & Bronchiectasis as I saw it under "Harmonica Therapy" Posted..." + (show)
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Pamela, I reposted this is MAC & Bronchiectasis as I saw it under "Harmonica Therapy"

Posted by @pamelasc1, 1 hour ago
This is just a general question to the group: I will be ending my 18 months of being on the meds for MAC end of April. I do cough some, but infrequently and do not bring up much of anything. How am I going to get a sputum sample? Before, I had no trouble with that as I was coughing all the time. I just began using a nebulizer in the AM to see if that would bring up stuff, but so far it has not. If I can not get it myself, will I have to have a bronchoscopy? I dread that as I had it done once, but that was years ago and they used no sedative or anything! Maybe it is less invasive now? Can anyone suggest all the ways to bring up sputum? Before stopping the meds, I do want to know if the MAC has been beaten back. Thanks, Pamela

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Thank you, Katherine and Mary Jo! That does put it in perspective! Linda

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Terri Martin, Volunteer Mentor | @windwalker | Mar 2, 2017
In reply to @katemn "Posted by @pamelasc1, 22 minutes ago Thank you Katherine and Steve for the information as to..." + (show)
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Posted by @pamelasc1, 22 minutes ago
Thank you Katherine and Steve for the information as to how best to get the sputum up - lovely subject! - I will ask my doctor about adding the saline to my nebulizer. As to the Aerobika approach: can I purchase this device online or do I have to get a prescription? Pamela

@pamelasc1, Pamela, I wanted to get us back on our own MAC & Bronchiectasis Forum so am going to answer here.

I saw that actually Steve was adding Albuterol to his nebulizer ... which opens up the airways .. mention this to you doctor .. that could help also! In terms of he Aerobika .. you can just purchase it online.

I would love @decosmo and @maryjo2sell to jump in with their thoughts .. BECAUSE I took a chance and purchased mine on Ebay for half the price .. just $54 with shipping. BUT with my particular lung situation to get a forceful "flutter" I had to turn the "+" sign to maximum. SO my question to @decosmo and @maryjo2sell .. my Aerobika looked absolutely legit when I compared it to the website https://www.monaghanmed.com/Aerobika .. AND it came with full instruction booklet etc in a plastic bag .. AND it is getting up more sputum than I am able to get up with just my normal coughing .. BUT I am hesitant to recommend this particular Ebay sellar for half the price unless someone who purchased for full price tells me they have NEVER needed to go to the max "+" setting. So I am satisfied with it .. I cleaned it per the instructions .. I used antibacterial dishwash soap .. rinsing VERY carefully and air dry. But I just want to hear from @decosmo and @maryjo2sell and any other Aerobika users. Help! Hugs! Katherine

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<br><br><br><br><br>Yay! We are all three JAX Mayo girls! Terri M.<br> <br><br>

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Terri Martin, Volunteer Mentor | @windwalker | Mar 2, 2017
In reply to @jentaylor "Hello all, I am very curious & I'm wondering if any of you know if you..." + (show)
Profile picture for jentaylor @jentaylor

Hello all, I am very curious & I'm wondering if any of you know if you can get repeated MAC infections after treating it??! What are ways to avoid getting MAC again? I read about the water faucet issues on this forum which I've never heard or read about elsewhere! I'm learning SO much by reading everybody's posts! I'm so grateful for being a part of this forum!!! ~Jen

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Hi Jen. Yes, MAC can re-infect a person after treatment. It lies dormant in your body. I am curious to know the longest period of time a person has gone post-treatment before they became re-infected, if ever?

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Terri Martin, Volunteer Mentor | @windwalker | Mar 2, 2017

Thank you for posting this. I just finished watching it. Very inspiring! I love Dr. Keller; he is the one that did my first & only blood gas test. I was dreading it, but it was totally painless! (because he is the best!) I pray that I can hold on to my original lungs long enough to see the day they use stem cell regenerated lungs. Less chance of rejection issues. hope this day finds you well Katherine. Hugs! Terri M.

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lindam272 | @lindam272 | Mar 2, 2017

Good morning, all! I just saw a reference to this book, Beating Brochiectasis: How I Went From Diagnosis to Full Recovery in Just One Year by Daniel Pecaut in the Bronchiectasis News Today and ordered it. For $4, it's worth it if I just read one thing that makes my life a little easier. Thought I would share with you all in case you have any interest as well. https://www.amazon.com/Beating-Bronchiectasis-Went-Diagnosis-Recovery/dp/0998406201/ref=sr_1_1
Blessings on your day! Linda

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beatitnow | @beatitnow | Mar 2, 2017

Thank you, Linda!!! It's always nice to be able to read something encouraging!! 🙂

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Katherine, Alumni Mentor | @katemn | Mar 2, 2017
In reply to @lindam272 "Good morning, all! I just saw a reference to this book, Beating Brochiectasis: How I Went..." + (show)
Profile picture for lindam272 @lindam272

Good morning, all! I just saw a reference to this book, Beating Brochiectasis: How I Went From Diagnosis to Full Recovery in Just One Year by Daniel Pecaut in the Bronchiectasis News Today and ordered it. For $4, it's worth it if I just read one thing that makes my life a little easier. Thought I would share with you all in case you have any interest as well. https://www.amazon.com/Beating-Bronchiectasis-Went-Diagnosis-Recovery/dp/0998406201/ref=sr_1_1
Blessings on your day! Linda

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@lindam272, Linda, this is just great! PLUS for a Kindle download it was only 99 cents! I will start reading it tonight! Thanks for the heads up! So many of us have bronchiectasis .. any help will be a help! Hugs! Katherine

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heathert | @heathert | Mar 2, 2017

Hi everyone, heres an article about a new test for bacteria. May this mean less Broncs?

FDA clears test to help manage antibiotic treatment for lower respiratory tract infections and sepsis
On February 23, 2017, FDA cleared the expanded use of the Vidas Brahms PCT Assay to help health care providers determine if antibiotic treatment should be started or stopped in patients with lower respiratory tract infections, such as community-acquired pneumonia, and stopped in patients with sepsis. This is the first test to use procalcitonin (PCT), a protein associated with the body’s response to a bacterial infection, as a biomarker to help make antibiotic management decisions in patients with these conditions.

“Unnecessary antibiotic use may contribute to the rise in antibiotic-resistant infections,” said Alberto Gutierrez, Ph.D., director of the Office of In Vitro Diagnostics and Radiological Health at the FDA’s Center for Devices and Radiological Health. “This test may help clinicians make antibiotic treatment decisions.

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Katherine, Alumni Mentor | @katemn | Mar 2, 2017
In reply to @heathert "Hi everyone, heres an article about a new test for bacteria. May this mean less Broncs?..." + (show)
Profile picture for heathert @heathert

Hi everyone, heres an article about a new test for bacteria. May this mean less Broncs?

FDA clears test to help manage antibiotic treatment for lower respiratory tract infections and sepsis
On February 23, 2017, FDA cleared the expanded use of the Vidas Brahms PCT Assay to help health care providers determine if antibiotic treatment should be started or stopped in patients with lower respiratory tract infections, such as community-acquired pneumonia, and stopped in patients with sepsis. This is the first test to use procalcitonin (PCT), a protein associated with the body’s response to a bacterial infection, as a biomarker to help make antibiotic management decisions in patients with these conditions.

“Unnecessary antibiotic use may contribute to the rise in antibiotic-resistant infections,” said Alberto Gutierrez, Ph.D., director of the Office of In Vitro Diagnostics and Radiological Health at the FDA’s Center for Devices and Radiological Health. “This test may help clinicians make antibiotic treatment decisions.

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@heathert .. WOW! Heather .. this is really interesting!! My husband has actually had Sepsis TWICE!! Once as we were walking out the door at Mayo Clinic Rochester MN! It was so scary .. I had never ridden in an ambulance in my life before! This was an instance when my ability to be an Advocate took hold! I always carry a thermometer with me when I am with him .. the hospital had patients in the Emergency room lined up in the HALLWAYS waiting to be processed! People lined up at the Nurse's Station waiting to be spoken to. When I took my husband's temp and it was 101.5 .. AND he has CLL .. I marched right up to that Nurse's Station .. pushed in front of a Policeman (who was NOT very happy!) and said "My husband has CLL .. he has a temp of 101.5 .. you get him into a room RIGHT NOW and an IV antibiotic RIGHT NOW!!". I was NOT going to be denied!! I was SOOOO correct .. it turned out he had SEPSIS and could have died!!

Having had so many life experiences like this may be why I am SO big on being on being our OWN best advocates!

A link to this is: https://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm543160.htm

Again Heather, thank you for this information! Hugs! Katherine

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