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.

Mentor
Terri Martin, Volunteer Mentor | @windwalker | Mar 8, 2017
In reply to @katemn "Dear All, I HIGHLY suggest those of you who have Bronchiectasis or MAC sign up for..." + (show)
@katemn

Dear All,
I HIGHLY suggest those of you who have Bronchiectasis or MAC sign up for newsletters at: https://www.nationaljewish.org/ .. look at the bottom to sign up.

REALLY interesting info on: Attached you will find the November 2016 issue of NTM-TB Insights newsletter. Articles in this issue include:
Has the Time Come to Require Nontuberculous Mycobacteria Reporting?
Centers for Disease Control and Prevention (CDC). Reported Tuberculosis in the United States, 2015. Atlanta,

NTM-TB Insights Newsletter November 2016

***NOTE: ALREADY 11 states have Required Reporting for Nontuberculous Mycobacteria!! I didn't even know that!!

Hugs! Katherine

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<br><br><br><br><br>Will sign up. Thanks! <br> <br><br>

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Mar 9, 2017

<br><br><br><br><br>Hi Nanc, I don't have throat issues, but wanted to let you know that I feel <br>for you; that has to be annoying as heck.  -Terri M.<br> <br><br>

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Katherine, Alumni Mentor | @katemn | Mar 9, 2017
In reply to @katemn "Dear All, Just read a really interesting article on Bronchiectasis .. not saying it was fun..." + (show)

Terri, I understand what you mean .. I was hoping someone with similar issues would jump in. Katherine

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tdrell | @tdrell | Mar 9, 2017

Katherine....we all are sending our positive vibes that you will feel better soon. Did i recall you saying you sat near someone ill while on a trip? Terrid

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5 replies
Katherine, Alumni Mentor | @katemn | Mar 9, 2017
In reply to @tdrell "Katherine....we all are sending our positive vibes that you will feel better soon. Did i recall..." + (show)
@tdrell

Katherine....we all are sending our positive vibes that you will feel better soon. Did i recall you saying you sat near someone ill while on a trip? Terrid

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@tdrell thank you Terri, but the trip was totally unrelated! Hugs! Katherine

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Jennifer | @megan123 | Mar 9, 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!

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Sending u luv and strength

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Mar 9, 2017
In reply to @katemn "Dear All, Just read a really interesting article on Bronchiectasis .. not saying it was fun..." + (show)

@gaylejean Also, feel free to join our NET group. Just go the NET group home page and click on "Following" at the top of the page (in dark blue letters) and you will receive posts from all of our members and information about what is new with NETs. Teresa

REPLY
pamelasc | @pamelasc1 | Mar 9, 2017
In reply to @tdrell "Katherine....we all are sending our positive vibes that you will feel better soon. Did i recall..." + (show)
@tdrell

Katherine....we all are sending our positive vibes that you will feel better soon. Did i recall you saying you sat near someone ill while on a trip? Terrid

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Dear Katherine .. you are such a leader and mentor for so many of us... learning you have been so sick takes the wind right out of our sails.. I hope you will begin to feel better soon. I was diagnosed with pseud but the doctor never told me it was NOT curable...it cleared up within about 3 weeks with the drug Levofloxacin. Can you tell me how Dr. Aksamint knew you had the pseud ... were you coughing really badly, or did he just test the sputum and find it...was he able to test for pseud and MAC in the same sample or did you have to submit two samples... your diagnosis now makes me realize that I could get pseud again so I am curious as to how you first had signs that something was amiss. Am sending you good thoughts for healing quickly, Pam

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ilgrp4e | @ilgrp4e | Mar 9, 2017

So my mom just got her bronchiactisis and myobacterium avium. But she also take many meds for her rheumatoid arthritis. She just started taking the antibiotics for the myobacterium but is getting fever up to 103, nausea, diarhea which is making her incontinent, uncontrollable chills, sweats, rapid heart beat and shortness of breath. All side effects since she started taking pills. Had to go to er and the doctors said nothing's wrong w her. I'm sure this are from the meds. Waiting on her infectious disease doctor to call her back. Has anyone had to stop the antibiotics from having these side effects? Is there other kind to help treat? I'm freaking out for my poor mom. I need all the help or advice I can have. We are in Chicago so if anyone knows of anything please tell.
Thanks

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47 replies
marier | @marier | Mar 9, 2017
In reply to @ilgrp4e "So my mom just got her bronchiactisis and myobacterium avium. But she also take many meds..." + (show)
@ilgrp4e

So my mom just got her bronchiactisis and myobacterium avium. But she also take many meds for her rheumatoid arthritis. She just started taking the antibiotics for the myobacterium but is getting fever up to 103, nausea, diarhea which is making her incontinent, uncontrollable chills, sweats, rapid heart beat and shortness of breath. All side effects since she started taking pills. Had to go to er and the doctors said nothing's wrong w her. I'm sure this are from the meds. Waiting on her infectious disease doctor to call her back. Has anyone had to stop the antibiotics from having these side effects? Is there other kind to help treat? I'm freaking out for my poor mom. I need all the help or advice I can have. We are in Chicago so if anyone knows of anything please tell.
Thanks

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Yes they had to change my medicinre i was alergic it

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