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 5, 2019
In reply to @lisesoleil "Hi, thanks i known the bacterias are in environmental but it is special then my mother..." + (show)
@lisesoleil

Hi, thanks i known the bacterias are in environmental but it is special then my mother got the sames of me after one year diagnosis me. She have 80 years old and she don't want the traitements because she see me how i feel badly somes times...but she will meet a doctor who will help her to change the idea...i hope...we will see...
Thanks again.

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@lisesoleil Hi there. You can click on my picture and read about my treatment plan. There are other inhalable medications available now also. Be sure that both you and your mom have a suseptibility test done to see what will work on your particular strain of mac.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Mar 5, 2019
In reply to @sounder27 "Your suggestions have spurred me to consider becoming more disciplined in my approach to my multi..." + (show)
@sounder27

Your suggestions have spurred me to consider becoming more disciplined in my approach to my multi faceted problems. It seems one is responsible for the other like a cascade of physical effects that influence the others. Sometimes it’s difficult to find the point of origin and begin there to improve the big picture. Thank you for pointing out the place to begin the improvements and encouraging me to action on my own behalf. I am grateful for finding this forum to share our experiences regarding our methods and products that improve the quality of our day to day coping with all the health issues that we share.

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@sounder27 I know what you mean. I remember when I first found this site. It was a Godsend. I have never known such a wonderful group of people as the members we have here.

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Mentor
Sue, Volunteer Mentor | @sueinmn | Mar 5, 2019
In reply to @lisesoleil "Hi, thanks i known the bacterias are in environmental but it is special then my mother..." + (show)
@lisesoleil

Hi, thanks i known the bacterias are in environmental but it is special then my mother got the sames of me after one year diagnosis me. She have 80 years old and she don't want the traitements because she see me how i feel badly somes times...but she will meet a doctor who will help her to change the idea...i hope...we will see...
Thanks again.

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@lisesoleil Hi, Lise - My husband & I both have bronchiectasis from different causes, but only I have contracted MAC. He got a different infection. Our daughter also has bronchectasis, but currently no lung infection.
We are a family with 3 generations that have bronchiectasis - our University will be studying my daughter, brother, husband and me to see if they can identify any genetic link.They say it is unusual, but not totally unheard of.
I am tolerating the 3 antibiotics, but when my mother had MAC in her 80's she was unable to take any of them. The infection is very slow to grow in most people, so hers was not treated, and it did not cause her death a few years later - it was from a different illness.

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1 reply
lisesoleil | @lisesoleil | Mar 6, 2019

Thanks you, for sharing your story....it helps me to understands...

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mariierod123 | @mariierod123 | Mar 6, 2019
In reply to @sueinmn "@lisesoleil Hi, Lise - My husband & I both have bronchiectasis from different causes, but only..." + (show)
@sueinmn

@lisesoleil Hi, Lise - My husband & I both have bronchiectasis from different causes, but only I have contracted MAC. He got a different infection. Our daughter also has bronchectasis, but currently no lung infection.
We are a family with 3 generations that have bronchiectasis - our University will be studying my daughter, brother, husband and me to see if they can identify any genetic link.They say it is unusual, but not totally unheard of.
I am tolerating the 3 antibiotics, but when my mother had MAC in her 80's she was unable to take any of them. The infection is very slow to grow in most people, so hers was not treated, and it did not cause her death a few years later - it was from a different illness.

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My twin sister and i both have this they said mine was gone a year ago after using antibitics for 18 months now they saiy it hss returned i refise to use the antibitics sgain as i gained 40 piunds using it it doesnt cure anything and creates stomach issues also im lookimg for an alternate treatment

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Mar 8, 2019
In reply to @america "Hi Janice! I live in the Tampa area! I am going to Mayo Clinic next week...." + (show)
@america

Hi Janice! I live in the Tampa area! I am going to Mayo Clinic next week. I will let everyone know how my testing go. I hope I will be tested negative but we’ll see. I wish you well. Rita

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@america Hi Rita! How did your Mayo visit go?

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america | @america | Mar 8, 2019

Hi Terri! I a little disappointed with my result. I have pseudomonas and my Mac is growing again... I also have an infection in my right lobe.. I’m still trying to accept
It and go from there. Because I cannot tolerate Toby every 28 days .... I will be using it 7 days and break for seven. I also need to go back in May. 🙁 Rita

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3 replies
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Mar 8, 2019
In reply to @america "Hi Terri! I a little disappointed with my result. I have pseudomonas and my Mac is..." + (show)
@america

Hi Terri! I a little disappointed with my result. I have pseudomonas and my Mac is growing again... I also have an infection in my right lobe.. I’m still trying to accept
It and go from there. Because I cannot tolerate Toby every 28 days .... I will be using it 7 days and break for seven. I also need to go back in May. 🙁 Rita

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@america Oh Rita, I am sorry your news was not good. I hope that your pseudomonas goes away as quickly and easily as mine did. Hang in there Rita, conquering mac takes a long time. Sending you a BIG cyber hug !

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1 reply
mariierod123 | @mariierod123 | Mar 8, 2019
In reply to @america "Hi Terri! I a little disappointed with my result. I have pseudomonas and my Mac is..." + (show)
@america

Hi Terri! I a little disappointed with my result. I have pseudomonas and my Mac is growing again... I also have an infection in my right lobe.. I’m still trying to accept
It and go from there. Because I cannot tolerate Toby every 28 days .... I will be using it 7 days and break for seven. I also need to go back in May. 🙁 Rita

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I have thst also is it part of mac how are they treating u?

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boomerexpert | @boomerexpert | Mar 8, 2019
In reply to @america "Hi Terri! I a little disappointed with my result. I have pseudomonas and my Mac is..." + (show)
@america

Hi Terri! I a little disappointed with my result. I have pseudomonas and my Mac is growing again... I also have an infection in my right lobe.. I’m still trying to accept
It and go from there. Because I cannot tolerate Toby every 28 days .... I will be using it 7 days and break for seven. I also need to go back in May. 🙁 Rita

Jump to this post

@america do you trust your docs implicitly?

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