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 | Jan 24, 2017
In reply to @ginak "Thank you Terri, I'm going to check those out. I'll also continue to read through these..." + (show)
@ginak

Thank you Terri, I'm going to check those out. I'll also continue to read through these pages to see if I find anything.
Irene, I'm still teaching. I have another 2 years to go until I retire. With all the dust at work, and being in an old school building, I was wondering if that could have been where I got it. Does anyone have any ideas where they might have gotten in.? My Dr said it's a bacteria that's "every where" and I've read some people were saying hot tubs.
I hate to say I'm glad I'm not alone. It was very disheartening when I got my diagnosis and no one I spoke to had ever heard of it. I was very hopeful when I saw this forum and read about so many other people. I wish none of us had it but I'm happy to have found a place to talk about it.
Thank you all.
Gina

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<br><br><br><br><br>Awe....I really appreciate this note of encouragement. I attend a lung <br>transplant support group at the Mayo and have met other survivors and <br>'Thrivers'. I will meet with them on the 7th. Pretty sure it will be an <br>inevitable step I will have to take some day myself; and I am trying to get <br>myself used to the idea and gain confidence. I joined a gym today to build up my <br>body for the fight.<br> <br><br>

REPLY
Katherine, Alumni Mentor | @katemn | Jan 24, 2017
In reply to @ginak "Thank you Terri, I'm going to check those out. I'll also continue to read through these..." + (show)
@ginak

Thank you Terri, I'm going to check those out. I'll also continue to read through these pages to see if I find anything.
Irene, I'm still teaching. I have another 2 years to go until I retire. With all the dust at work, and being in an old school building, I was wondering if that could have been where I got it. Does anyone have any ideas where they might have gotten in.? My Dr said it's a bacteria that's "every where" and I've read some people were saying hot tubs.
I hate to say I'm glad I'm not alone. It was very disheartening when I got my diagnosis and no one I spoke to had ever heard of it. I was very hopeful when I saw this forum and read about so many other people. I wish none of us had it but I'm happy to have found a place to talk about it.
Thank you all.
Gina

Jump to this post

Terri, it must be because you are: " it because I am returning replies straight out of my mailbox?"

It only works if from your email you hit VIEW & REPLY.. then when you read the post inside our Forum .. THEN you hit the heart below the Post.
like I just did at https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/?pg=23#post-247612

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jan 24, 2017
In reply to @ginak "Thank you Terri, I'm going to check those out. I'll also continue to read through these..." + (show)
@ginak

Thank you Terri, I'm going to check those out. I'll also continue to read through these pages to see if I find anything.
Irene, I'm still teaching. I have another 2 years to go until I retire. With all the dust at work, and being in an old school building, I was wondering if that could have been where I got it. Does anyone have any ideas where they might have gotten in.? My Dr said it's a bacteria that's "every where" and I've read some people were saying hot tubs.
I hate to say I'm glad I'm not alone. It was very disheartening when I got my diagnosis and no one I spoke to had ever heard of it. I was very hopeful when I saw this forum and read about so many other people. I wish none of us had it but I'm happy to have found a place to talk about it.
Thank you all.
Gina

Jump to this post

<br><br><br><br><br>You mentioned that that woman ended up traveling a lot. That is also <br>encouraging to me because I would LOVE to travel, but don't have the stamina to <br>do right now.<br> <br><br>

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jan 24, 2017
In reply to @ginak "Thank you Terri, I'm going to check those out. I'll also continue to read through these..." + (show)
@ginak

Thank you Terri, I'm going to check those out. I'll also continue to read through these pages to see if I find anything.
Irene, I'm still teaching. I have another 2 years to go until I retire. With all the dust at work, and being in an old school building, I was wondering if that could have been where I got it. Does anyone have any ideas where they might have gotten in.? My Dr said it's a bacteria that's "every where" and I've read some people were saying hot tubs.
I hate to say I'm glad I'm not alone. It was very disheartening when I got my diagnosis and no one I spoke to had ever heard of it. I was very hopeful when I saw this forum and read about so many other people. I wish none of us had it but I'm happy to have found a place to talk about it.
Thank you all.
Gina

Jump to this post

<br><br><br><br><br>Thank you, Terry D!<br> <br><br>

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jan 24, 2017
In reply to @ginak "Thank you Terri, I'm going to check those out. I'll also continue to read through these..." + (show)
@ginak

Thank you Terri, I'm going to check those out. I'll also continue to read through these pages to see if I find anything.
Irene, I'm still teaching. I have another 2 years to go until I retire. With all the dust at work, and being in an old school building, I was wondering if that could have been where I got it. Does anyone have any ideas where they might have gotten in.? My Dr said it's a bacteria that's "every where" and I've read some people were saying hot tubs.
I hate to say I'm glad I'm not alone. It was very disheartening when I got my diagnosis and no one I spoke to had ever heard of it. I was very hopeful when I saw this forum and read about so many other people. I wish none of us had it but I'm happy to have found a place to talk about it.
Thank you all.
Gina

Jump to this post

<br><br><br><br><br>I tried using the 'view & reply' button but it takes me to older posts <br>and I can never find the post I wanted to reply to. It's ok. just know that I <br>LIKE everybodie's posts!<br> <br><br>

REPLY
maryjo2sell | @maryjo2sell | Jan 24, 2017

Katherine, I think you mentioned wanting to try the Aerobika. I highly recommend it. I love mine. I have 2. They vibrate well to loosen the stuff and they are so much easier than an Acapella to clean. Always clean with distilled water. I have had mine for at least 2 years.
Can I ask a question here? I get a lot of emails from the forum, some I would answer or make a suggestion. But I find trying put the answer with the question impossible. I always just scroll to the last page, write stuff out and click post reply. Is that way to do it? Mary jo

REPLY
4 replies
Katherine, Alumni Mentor | @katemn | Jan 24, 2017

@maryjo2sell, Maryjo, thank you so much for the great info! Where did you find the best price to purchase yours?

Question: Are you working from the Daily Digest?
1. if so just hit 'VIEW & REPLY' just under that particular post .. then you can reply/answer .. or "LIKE/heart" .. (do NOT nit REPLY BY EMAIL . that will not go on the Forum)

Question: Are you working from individual emails?
1. if so just hit 'VIEW & REPLY' just under that particular email .. it will take you to our Forum .. then you can reply/answer .. or "LIKE/heart"
https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/?pg=23#post-247625

Hope this helps .. if it doesn't .. just let me know! Hugs to you! Katherine

REPLY
9 replies
Katherine, Alumni Mentor | @katemn | Jan 24, 2017
In reply to @ginak "Thank you Terri, I'm going to check those out. I'll also continue to read through these..." + (show)
@ginak

Thank you Terri, I'm going to check those out. I'll also continue to read through these pages to see if I find anything.
Irene, I'm still teaching. I have another 2 years to go until I retire. With all the dust at work, and being in an old school building, I was wondering if that could have been where I got it. Does anyone have any ideas where they might have gotten in.? My Dr said it's a bacteria that's "every where" and I've read some people were saying hot tubs.
I hate to say I'm glad I'm not alone. It was very disheartening when I got my diagnosis and no one I spoke to had ever heard of it. I was very hopeful when I saw this forum and read about so many other people. I wish none of us had it but I'm happy to have found a place to talk about it.
Thank you all.
Gina

Jump to this post

Terri, see my response to Maryjo below .. does that help? Hugs Katherine
++++++++++++++++++++++++++++++++++++
* Question: Are you working from the Daily Digest?
1. if so just hit 'VIEW & REPLY' just under that particular post .. then you can reply/answer .. or "LIKE/heart" .. (do NOT nit REPLY BY EMAIL . that will not go on the Forum)
Question: Are you working from individual emails?
1. if so just hit 'VIEW & REPLY' just under that particular email .. it will take you to our Forum .. then you can reply/answer .. or "LIKE/heart"
https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/?pg=23#post-247625

REPLY
tdrell | @tdrell | Jan 24, 2017
In reply to @ginak "Thank you Terri, I'm going to check those out. I'll also continue to read through these..." + (show)
@ginak

Thank you Terri, I'm going to check those out. I'll also continue to read through these pages to see if I find anything.
Irene, I'm still teaching. I have another 2 years to go until I retire. With all the dust at work, and being in an old school building, I was wondering if that could have been where I got it. Does anyone have any ideas where they might have gotten in.? My Dr said it's a bacteria that's "every where" and I've read some people were saying hot tubs.
I hate to say I'm glad I'm not alone. It was very disheartening when I got my diagnosis and no one I spoke to had ever heard of it. I was very hopeful when I saw this forum and read about so many other people. I wish none of us had it but I'm happy to have found a place to talk about it.
Thank you all.
Gina

Jump to this post

Windwalker...I am friends on Facebook with the lady who has the double lung transplant...and I see from her posts that she goes to a variety of cities in the USA....CHicago...washington...door county wisconsin....the list goes on and on.terrid

REPLY
milindohope83 | @milindohope83 | Jan 25, 2017
In reply to @jillnc "Hello - I thought I'd post an update as my ID Drs here in NE were..." + (show)
@jillnc

Hello - I thought I'd post an update as my ID Drs here in NE were unsure if there was a protocal to be desentatize to one of the drugs I found out I was allergic to last fall. As I was weened off predisone, for an autoimmune issue, I started developing an itchy rash to Ethambutol. My ID Drs put me in touch with an allergist. Depending on what she says about me having RSV right now, I am supposed to be desentized a week from today. The allergist says she's never done this particular drug before, but has done a lot of others. It'll take all day at an outpatient center and maybe a part of the next, will have to see since she hasn't done this one before. I should note I have had clear cultures of MAC since August and I've been off Ethambutol since mid Oct. My timing of my mayo clinic trip, the holidays and restricted days the allergist does this have resulted in the longer than normal wait, but was assured by my ID Drs that a few months in the world of MAC isn't bad because of how slow it grows and my last cultures in Nov were clear. I know I haven't read ALL information on this page, but wonder if anyone has been desentized to this drug before and how it went for you? (I know results are different for everyone). Thanks.

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You have to be very careful with Tylenol. It is an effective pain medication for minor to moderate pain. By taking extra Strength Tylenol (2) 500mg tabs every 4-6 hours. is tough on your liver over time. Nsaids reduce swelling and inflammation as well as pain, but take about 6 hour apart. It is so painful when your hip starts to go south, but some stretching as tolerated do help along with ice packs. Best of luck my dear, I know how painful hip pain can be.

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