(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.

Hi everyone. I am going to be evacuating the area in the next day or two due to hurricane Florence. Please keep an eye out for each other. I will check in as I can.

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@windwalker

Hi everyone. I am going to be evacuating the area in the next day or two due to hurricane Florence. Please keep an eye out for each other. I will check in as I can.

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Be safe terri! I’ll say a prayer for you!

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@windwalker

Hi everyone. I am going to be evacuating the area in the next day or two due to hurricane Florence. Please keep an eye out for each other. I will check in as I can.

Jump to this post

@windwalker Stay safe. We will try to stay out of trouble while you chase hurricanes around!

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@windwalker

Hi everyone. I am going to be evacuating the area in the next day or two due to hurricane Florence. Please keep an eye out for each other. I will check in as I can.

Jump to this post

@windwalker Take care.

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@windwalker

Hi everyone. I am going to be evacuating the area in the next day or two due to hurricane Florence. Please keep an eye out for each other. I will check in as I can.

Jump to this post

Stay safe Terri.

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@windwalker

Hi everyone. I am going to be evacuating the area in the next day or two due to hurricane Florence. Please keep an eye out for each other. I will check in as I can.

Jump to this post

@windwalker Terri, I just heard on the radio this afternoon about the need to evacuate residents ahead of the hurricane and was wondering if it would affect where you live. Looks like it would. Please be careful, stay safe and take good care of yourself. Let us know how is everything when you get to your destination.

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@ling123

@windwalker Terri, I just heard on the radio this afternoon about the need to evacuate residents ahead of the hurricane and was wondering if it would affect where you live. Looks like it would. Please be careful, stay safe and take good care of yourself. Let us know how is everything when you get to your destination.

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@ling123 Thank you Ling. I think we might be spared. Will know more tomorrow. Planning to go to Florida.

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@oldkarl

@windwalker Stay safe. We will try to stay out of trouble while you chase hurricanes around!

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@oldkark LOL! Thanks Karl!

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@windwalker

Hi everyone. I am going to be evacuating the area in the next day or two due to hurricane Florence. Please keep an eye out for each other. I will check in as I can.

Jump to this post

Be safe @windwalker !

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@windwalker

@ling123 Thank you Ling. I think we might be spared. Will know more tomorrow. Planning to go to Florida.

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@windwalker ...Be safe.

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