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.

ginak | @ginak | Aug 30, 2017
In reply to @ling123 "@colleenyoung Colleen, yes, I do receive daily digest every single day. Just no email notifications for..." + (show)
@ling123

@colleenyoung Colleen, yes, I do receive daily digest every single day. Just no email notifications for any posting from this group, MAC & Bronchiectasis. I can see it under Groups in my profile. Does that mean that I'm following it, or do I need to click Follow?

Jump to this post

It says +Following

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ling123 | @ling123 | Aug 30, 2017
In reply to @ling123 "@colleenyoung Colleen, yes, I do receive daily digest every single day. Just no email notifications for..." + (show)
@ling123

@colleenyoung Colleen, yes, I do receive daily digest every single day. Just no email notifications for any posting from this group, MAC & Bronchiectasis. I can see it under Groups in my profile. Does that mean that I'm following it, or do I need to click Follow?

Jump to this post

Colleen, I see a list of topics for the MAC group.Yes, I see +Follow under the group name.

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nick52 | @nick52 | Aug 30, 2017
In reply to @kathyg "Hello, Kate What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with..." + (show)
@kathyg

Hello, Kate

What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with MAC, found out via a phone call from my Mayo doctor last night. I have been coughing for over 14 months and I just kept trying to get someone to tell me why..... Now that I have the diagnosis, what do I do? My first reaction was to try to get more information and that is how I stumbled across your posting. My doctor, Dr. Mullen at Mayo in Rochester, is a very nice man and he explained that some of the side effects of the treatment can be worse than the disease. So, I rejected the idea. When I saw your post saying that the reality may not be as bad as the hype, it gives me a different perspective. Would you be willing to share more of your experience with me? The doctors can only tell you what the books tell them unless they have had a patient who has gone through the process. Even then, different folks can have differing reactions. I am a 58 year old, recently retired (in part due to the coughing with the embarrassing results), I am overweight so the shortness of breath was attributed to that.....

Thank you, Kathy

Jump to this post

Hi Kahy,
Have you tried natural herb called Clear Lund from Ridgecrest. It clears my lungs and stop my coughing. I do not take antibiotics.

REPLY
nick52 | @nick52 | Aug 30, 2017
In reply to @kathyg "Hello, Kate What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with..." + (show)
@kathyg

Hello, Kate

What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with MAC, found out via a phone call from my Mayo doctor last night. I have been coughing for over 14 months and I just kept trying to get someone to tell me why..... Now that I have the diagnosis, what do I do? My first reaction was to try to get more information and that is how I stumbled across your posting. My doctor, Dr. Mullen at Mayo in Rochester, is a very nice man and he explained that some of the side effects of the treatment can be worse than the disease. So, I rejected the idea. When I saw your post saying that the reality may not be as bad as the hype, it gives me a different perspective. Would you be willing to share more of your experience with me? The doctors can only tell you what the books tell them unless they have had a patient who has gone through the process. Even then, different folks can have differing reactions. I am a 58 year old, recently retired (in part due to the coughing with the embarrassing results), I am overweight so the shortness of breath was attributed to that.....

Thank you, Kathy

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Cindy try Clear Lungs (natural herbs) for you MAC coughing. I use it and it is working well. I do not cough a lot. When you cough it is because you lungs need to reject obstructions. Keep eating more alkaline food for your rhumatstist. Good luck!

REPLY
nick52 | @nick52 | Aug 30, 2017
In reply to @kathyg "Hello, Kate What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with..." + (show)
@kathyg

Hello, Kate

What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with MAC, found out via a phone call from my Mayo doctor last night. I have been coughing for over 14 months and I just kept trying to get someone to tell me why..... Now that I have the diagnosis, what do I do? My first reaction was to try to get more information and that is how I stumbled across your posting. My doctor, Dr. Mullen at Mayo in Rochester, is a very nice man and he explained that some of the side effects of the treatment can be worse than the disease. So, I rejected the idea. When I saw your post saying that the reality may not be as bad as the hype, it gives me a different perspective. Would you be willing to share more of your experience with me? The doctors can only tell you what the books tell them unless they have had a patient who has gone through the process. Even then, different folks can have differing reactions. I am a 58 year old, recently retired (in part due to the coughing with the embarrassing results), I am overweight so the shortness of breath was attributed to that.....

Thank you, Kathy

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I got mine in 2009 after a big pneumonia. They also found a cancerous tumor in my right breast that same year. Thank God it was stage 1

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 30, 2017
In reply to @ginak "Hi all, I haven't been receiving any emails lately and thought I somehow removed it. Perhaps..." + (show)
@ginak

Hi all, I haven't been receiving any emails lately and thought I somehow removed it. Perhaps no one has been posting that much any more. Just checking in to be sure I'm still connected.
Thanks
Gina K

Jump to this post

@ginak here you go.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 30, 2017
In reply to @ginak "Hi all, I haven't been receiving any emails lately and thought I somehow removed it. Perhaps..." + (show)
@ginak

Hi all, I haven't been receiving any emails lately and thought I somehow removed it. Perhaps no one has been posting that much any more. Just checking in to be sure I'm still connected.
Thanks
Gina K

Jump to this post

@ginak, You are right, Gina. The forum did go quite for a bit. I had wondered the same thing. "Hey, where did everybody go?"

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Moderator
Colleen Young, Connect Director | @colleenyoung | Aug 30, 2017
In reply to @ling123 "@colleenyoung Colleen, yes, I do receive daily digest every single day. Just no email notifications for..." + (show)
@ling123

@colleenyoung Colleen, yes, I do receive daily digest every single day. Just no email notifications for any posting from this group, MAC & Bronchiectasis. I can see it under Groups in my profile. Does that mean that I'm following it, or do I need to click Follow?

Jump to this post

@ling123, please click the +Follow so that it changes to +Following. That will ensure you don't miss any posts.

REPLY
ling123 | @ling123 | Aug 30, 2017

@colleenyoung Colleen, it is showing Following now. Thanks.

REPLY
2 replies
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 30, 2017
In reply to @colleenyoung "@ginak @ling123 That's odd because according to the daily digest there have been 5-25 posts every..." + (show)
@colleenyoung

@ginak @ling123 That's odd because according to the daily digest there have been 5-25 posts every day since Aug. 25 except Aug . 27. Do you both receive the Daily Digest?

Jump to this post

@lindam272 and @colleenyoung The post has gone notably quite since Katherine passed. Many are grieving, some recently returned to the forum and are just learning about it for the first time. One member called me yesterday, and said that she just recently learned about it. She was due to catch a plane and missed it because she was crying so hard. Katherine's passing hit everybody hard. She was so beloved by our members, and I am sure that it just doesn't feel the same without her. I get it, because I miss her too.

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