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!

++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
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 | Mar 2, 2017
In reply to @windwalker "Thank you for posting this. I just finished watching it. Very inspiring! I love Dr. Keller;..." + (show)
@windwalker

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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WOW! Terri!

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Mar 2, 2017
In reply to @windwalker "Thank you for posting this. I just finished watching it. Very inspiring! I love Dr. Keller;..." + (show)
@windwalker

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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<br><br><br><br><br>I know! It is amazing! Right now they are using a lab in Maryland that <br>takes in 'dirty' donor lungs that would otherwise be unsuitable for <br>transplanting, and cleans them. They have equipment that can keep <br>the donor lungs alive hours longer now while they do the cleaning process. <br>This way there are more lungs to go around. The Mayo in Jacksonville has <br>been breaking ground to build it's own organ rejuvenation center. It all <br>blows me away! Gotta love science! I have to say; my disease intrigues me more <br>than it scares me.<br> <br><br>

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heathert | @heathert | Mar 3, 2017

No worries, there seems to be alot of people who say they have had stem cell treatment (cells from blood or fat from bone marrow),, some say it worked and some say it diddnt. Lets hope they get this working well soon along with some great new antibiotics.

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Terri Martin, Volunteer Mentor | @windwalker | Mar 3, 2017
In reply to @heathert "No worries, there seems to be alot of people who say they have had stem cell..." + (show)
@heathert

No worries, there seems to be alot of people who say they have had stem cell treatment (cells from blood or fat from bone marrow),, some say it worked and some say it diddnt. Lets hope they get this working well soon along with some great new antibiotics.

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<br><br><br><br><br>Amen to that!<br> <br><br>

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Mar 3, 2017
In reply to @heathert "Hi everyone, heres an article about a new test for bacteria. May this mean less Broncs?..." + (show)
@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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<br><br><br><br><br>Your husband is lucky indeed to have you! What is CLL?<br> <br><br>

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Terri Martin, Volunteer Mentor | @windwalker | Mar 3, 2017
In reply to @lindam272 "Good morning, all! I just saw a reference to this book, Beating Brochiectasis: How I Went..." + (show)
@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?s=books&ie=UTF8&qid=1488470221&sr=1-1&keywords=pecaut
Blessings on your day! Linda

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<br><br><br><br><br>Hi Linda, please let us know if this book was helpful.<br> <br><br>

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david1952 | @david1952 | Mar 3, 2017
In reply to @katemn "Hello All .. @decosmo and @maryjo2sell An update on the Aerobika. As I mentioned .. I..." + (show)
@katemn

Hello All .. @decosmo and @maryjo2sell An update on the Aerobika. As I mentioned .. I ordered a 2nd Aerobika from a medical supply company after being concerned that I had to place the dial at the maximum level to create enough resistance/ "huff coughing" to be effective. Well I received the 2nd Aerobika .. cleaned it carefully as I had the one from Ebay. Then I traded off from one to the other in "huff coughing" to see what difference I could find. If I am 100% honest I just couldn't find much difference .. at MOST the difference might be in favor of the medical supply Aerobika of perhaps 5 to 10% greater resistance. If I were to GUESS .. the medical supply one came with a bit more fancy hand outs .. but the EBAY came with the proper full Aerobika Instructions for Use .. so MAYBE Ebay gets "Returns" that are just fine but Medical Supply companies can't resell???? So frankly if money is a BIG issue for someone .. if you Private Message me .. I will share with you the Ebay vendor I purchased mine from. BUT if not .. I would purchase your Aerobika from a medical supply just to be safe! (also .. I am HOPING that the fact I must put the dial at the Maximum means my lungs are pretty darn decent??)
Hugs! Katherine

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Thanks Kate, Hearing your routine was really helpful!!!!!
David

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pamelasc | @pamelasc1 | Mar 3, 2017
In reply to @katemn "Dear All.. wanted to share a tip with you in case you might need it. I..." + (show)
@katemn

Dear All.. wanted to share a tip with you in case you might need it. I was traveling to an area that had TERRIBLE POLLUTION ( equivalent to smoking a pack of cigarettes per day!) I was very aware of various masks including the 3M N95 but did my "due diligence" and found this (I got a kinda cute one!):

http://www.cambridgemask.com/buy-a-mask/international/ Where I purchase mine .. bought two of them .. shipped from the UK .. was SO happy with them. Very easy to breathe through .. in fact on the plane home was across from a woman with a TERRIBLE cough .. so I wore mine the whole way home and did NOT catch her cold! So I would highly recommend this mask to anyone of us with our poor immune systems. I have since CAREFULLY washed one of mine (did not even use the 2nd one) .. let it air dry and it is ready for use again.

I have SINCE found it at good old Amazon .. just can't believe it .. you can find ANYTHING at Amazon .. did not even look on Amazon at the time I purchased!! Hope this helps someone! Hugs! Katherine
https://www.amazon.com/gp/product/B01KK2NSVK/ref=as_li_qf_sp_asin_il_tl?ie=UTF8&tag=cambridgemask-20&camp=1789&creative=9325&linkCode=as2&creativeASIN=B01KK2NSVK&linkId=f4be07a257cb28b462c1db1dc0c037ab

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Katherine - as to this mask, what size did you order? Any suggestions as to how to know what is the best size? I have a narrow face. Pamela

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Katherine, Alumni Mentor | @katemn | Mar 3, 2017
In reply to @katemn "Dear All.. wanted to share a tip with you in case you might need it. I..." + (show)
@katemn

Dear All.. wanted to share a tip with you in case you might need it. I was traveling to an area that had TERRIBLE POLLUTION ( equivalent to smoking a pack of cigarettes per day!) I was very aware of various masks including the 3M N95 but did my "due diligence" and found this (I got a kinda cute one!):

http://www.cambridgemask.com/buy-a-mask/international/ Where I purchase mine .. bought two of them .. shipped from the UK .. was SO happy with them. Very easy to breathe through .. in fact on the plane home was across from a woman with a TERRIBLE cough .. so I wore mine the whole way home and did NOT catch her cold! So I would highly recommend this mask to anyone of us with our poor immune systems. I have since CAREFULLY washed one of mine (did not even use the 2nd one) .. let it air dry and it is ready for use again.

I have SINCE found it at good old Amazon .. just can't believe it .. you can find ANYTHING at Amazon .. did not even look on Amazon at the time I purchased!! Hope this helps someone! Hugs! Katherine
https://www.amazon.com/gp/product/B01KK2NSVK/ref=as_li_qf_sp_asin_il_tl?ie=UTF8&tag=cambridgemask-20&camp=1789&creative=9325&linkCode=as2&creativeASIN=B01KK2NSVK&linkId=f4be07a257cb28b462c1db1dc0c037ab

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@pamelasc1, Pamela, I had read on the website: SIZING " We have found that the best way to choose the mask is by weight. MEDIUM: 33 – 64kg= 73 to 141#" that is a pretty good leeway .. so I purchased the Medium .. and I am pretty small .. 5'2 and 116#. Hope that helps! Hugs! Katherine

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Katherine, Alumni Mentor | @katemn | Mar 3, 2017
In reply to @heathert "Hi everyone, heres an article about a new test for bacteria. May this mean less Broncs?..." + (show)
@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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@windwalker Terri, CLL is a blood cancer .. a leukemia. He has been on a new chemo, Imbruvica for the past two years and has been doing quite well .. we have been told it NOT a cure but is "life sustaining" .. we are delighted! Hugs! Katherine

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