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.

irene5 Irene Estes | @irene5 | Mar 8, 2017

Just signed up. Thank you. Irene

REPLY
gaylejean | @gaylejean | Mar 8, 2017
In reply to @katemn "Dear All, Just read a really interesting article on Bronchiectasis .. not saying it was fun..." + (show)

Never received an answer I posed about MAC. Is this something ALL NET patients are predisposed to or only those with pulmonary NETs? Reading all this kind of freaks me out.

REPLY
Katherine, Alumni Mentor | @katemn | Mar 8, 2017

@gaylejean, I am REALLY sorry you have not received an answer .. I guess we were all hoping/waiting for someone to jump in who knew what NET was? I just googled it and found: What is a Lung NET? Lung NETs are an uncommon type of tumour that start in the lungs. These tumours can occur at any age with the average onset in the 4th to 6th decade of life. They tend to grow slower than other types of lung cancers. They are made up of special kinds of cells called neuroendocrine cells. Other terms you may come across are pulmonary NET, bronchial NET or carcinoid or lung NET or carcinoid. ‘Pulmonary’ and ‘bronchial’ are both medical terms relating to the lungs

GayleJean, do you mind if I post your question under "Lungs" .. perhaps you might get more of a response from there .. people with the same issue? I will also post the definition I found. I really hope you find others who can support you. So sorry! Katherine

REPLY
4 replies
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Mar 8, 2017
In reply to @katemn "Sputum Test Results Posted by @windwalker in MAC & Bronchiectasis, 18 hours ago Hi ALL! Good..." + (show)
@katemn

Sputum Test Results
Posted by @windwalker in MAC & Bronchiectasis, 18 hours ago
Hi ALL! Good news to share. Got my last sputum test results yesterday. All Clear! No organisms found!! Yay!!! That is especially great news to me because I tend to get three different kinds. MAC, pseudomonas, and aspergillums

@windwalker Terri, I am posting this on the Main Forum .. BECAUSE I want you to get ALL the congratulations you so well deserve!! I am SO happy for you! YEAH!! Way to go girl! Big Hugs to you! Katherine

Jump to this post

<br><br><br><br><br>Thanks Katherine! I am pretty jazzed about it.<br> <br><br>

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Mar 8, 2017
In reply to @katemn "Sputum Test Results Posted by @windwalker in MAC & Bronchiectasis, 18 hours ago Hi ALL! Good..." + (show)
@katemn

Sputum Test Results
Posted by @windwalker in MAC & Bronchiectasis, 18 hours ago
Hi ALL! Good news to share. Got my last sputum test results yesterday. All Clear! No organisms found!! Yay!!! That is especially great news to me because I tend to get three different kinds. MAC, pseudomonas, and aspergillums

@windwalker Terri, I am posting this on the Main Forum .. BECAUSE I want you to get ALL the congratulations you so well deserve!! I am SO happy for you! YEAH!! Way to go girl! Big Hugs to you! Katherine

Jump to this post

<br><br><br><br><br>Thank you!<br> <br><br>

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Mar 8, 2017
In reply to @katemn "Dear All, As I have said to Colleen .. it is much easier for me to..." + (show)
@katemn

Dear All,
As I have said to Colleen .. it is much easier for me to give than to receive .. as such I am oh so aware of the caring and support you all feel for me .. but truthfully it sometimes makes my journey more difficult for me if your support is more than just a silent hand over heart message of positive energy .. know that I will receive that positive energy and become stronger for it .. energized by my dear Forum. That is what I need from you right now .. not the need for me to return any actual posts of support and caring .. I know you care without your posts.

That said I have some news to convey. I have been very ill since February 5. At times too ill to reply to your posts .. and as Colleen told me .. the Universe knew .. and there were NO POSTS during that early period! It was too funny! Finally toward the end of that silent period one unnamed member said .. to paraphrase .. "Why, with no posts for so long .. I thought everyone had been cured of MAC!" So for those 9 days it was pretty rough. Since then, my only activity has been to answer my Mayo Connect. Your posts have been my "happy place" .. even though many of you are going through tough times .. we all remind ourselves of "the journey" .. it's downs .. BUT it's many UPS!

I finally got an appointment at Mayo Clinic in Rochester for March 7 due to a cancellation.

So the news:
Yesterday was a tough day. Today is a better day. Yesterday I saw Dr. Timothy Aksamit at Mayo Clinic who I have a world of confidence in. The news was not great .. can always be worse .. good news was that my MAC has NOT returned! BUT it turns out that as a result of my compromised immune system and my Bronchiectasis .. I have developed a different bacteria .. Like Mac .. it is not curable .. only treatable. .. called Pseudomonas Aeruginosa. Several of our MAC & Bronchiectasis members have the same bacteria.

Dr. Aksamit is going to first try 500 mg Cipro 2x a day for 28 days .. which I have heard referred to as a "cannon" antibiotic .. hopefully that will "stabilize" this new bacteria as my MAC has been stabilized since May 2014.

If the Cipro does not work .. then I go on a 28 day on 28 day off cycle of an inhaled antibiotic called Tobramycin. Obviously I am hoping the Cipro works!

Jump to this post

<br><br><br><br><br>Katherine, it breaks my heart that you were so ill. The jig was def up when <br>you disappeared from this site. How are you feeling and doing now? -Terri <br>M.<br> <br><br>

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Mar 8, 2017
In reply to @katemn "Dear All, Just read a really interesting article on Bronchiectasis .. not saying it was fun..." + (show)

<br><br><br><br><br>Yeah, I read it too. It spelled doom and gloom for me because I have <br>multiple serious issues with my lungs. A dead duck so to speak. I am not buyin' <br>it, (because I don't want to). Folks, you don't know me, so you cannot imagine <br>the humor I said this with. -Terri M.<br> <br><br>

REPLY
Katherine, Alumni Mentor | @katemn | Mar 8, 2017
In reply to @katemn "Dear All, As I have said to Colleen .. it is much easier for me to..." + (show)
@katemn

Dear All,
As I have said to Colleen .. it is much easier for me to give than to receive .. as such I am oh so aware of the caring and support you all feel for me .. but truthfully it sometimes makes my journey more difficult for me if your support is more than just a silent hand over heart message of positive energy .. know that I will receive that positive energy and become stronger for it .. energized by my dear Forum. That is what I need from you right now .. not the need for me to return any actual posts of support and caring .. I know you care without your posts.

That said I have some news to convey. I have been very ill since February 5. At times too ill to reply to your posts .. and as Colleen told me .. the Universe knew .. and there were NO POSTS during that early period! It was too funny! Finally toward the end of that silent period one unnamed member said .. to paraphrase .. "Why, with no posts for so long .. I thought everyone had been cured of MAC!" So for those 9 days it was pretty rough. Since then, my only activity has been to answer my Mayo Connect. Your posts have been my "happy place" .. even though many of you are going through tough times .. we all remind ourselves of "the journey" .. it's downs .. BUT it's many UPS!

I finally got an appointment at Mayo Clinic in Rochester for March 7 due to a cancellation.

So the news:
Yesterday was a tough day. Today is a better day. Yesterday I saw Dr. Timothy Aksamit at Mayo Clinic who I have a world of confidence in. The news was not great .. can always be worse .. good news was that my MAC has NOT returned! BUT it turns out that as a result of my compromised immune system and my Bronchiectasis .. I have developed a different bacteria .. Like Mac .. it is not curable .. only treatable. .. called Pseudomonas Aeruginosa. Several of our MAC & Bronchiectasis members have the same bacteria.

Dr. Aksamit is going to first try 500 mg Cipro 2x a day for 28 days .. which I have heard referred to as a "cannon" antibiotic .. hopefully that will "stabilize" this new bacteria as my MAC has been stabilized since May 2014.

If the Cipro does not work .. then I go on a 28 day on 28 day off cycle of an inhaled antibiotic called Tobramycin. Obviously I am hoping the Cipro works!

Jump to this post

@windwalker,Terri and All, still pretty sick. Just one day on Cipro. BUT no more about me .. LAST discussion! PERIOD! I appreciate all your concerns but my focus is on YOU! PERIOD! Hugs to ALL! Katherine

REPLY
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