(MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS

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:

  1. Document Title Example:  Mayo Clinic Connect MAI/MAC Information
  2. 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
  3. 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!

KateMN

@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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@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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@windwalker ……Terri…hopefully you never got a cold from the neighbor kids so are in tip top shape to evacuate!! As you no doubt know take plenty of cash, medical supplies .batteries and water with. Hopefully have a place to stay….sending the white light for safety ,health and a quick return! Tdrell terri

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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 Somehow I thought you were in Florida. I might have gotten you confused with someone else.

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How do I set my account to see the newest posts first.

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@526laura

How do I set my account to see the newest posts first.

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Hi @526laura, to see the newest posts, select "Newest to Oldest" at the top of the discussion. At the moment, you make the selection per discussion. In the second phase of improvements, we will have a feature that will allow you to set your preference for your account so that you can always see the order you want. Stay tuned.

Here's further information about customizing the order you view posts: https://connect.mayoclinic.org/discussion/new-customize-the-order-you-view-posts-see-new-posts-first/

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@526laura Hi Laura. If you click on your picture or name, it should take you to your account. There, you should see a list of options. Click on the 'notifications' option and that will bring up the list of posts. Another way is to tap on 'view and respond' button, then scroll to the top of the page nd you will see numbered blocks with the last one saying 'last'. Click on that one and it will show the last thread. Then click on the numbered ones as you want to go back in that order.

Liked by ling123

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@ling123

@windwalker Somehow I thought you were in Florida. I might have gotten you confused with someone else.

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@ling123 LOL, many people think I live in Florida because I am down there frequently. I only live 2 1/2 hrs from the Mayo in Jacksonville. I am supposed to be down there by Thursday.

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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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@ling123 Hi. Ot's looking like we will be spared of the hurricane. They lifted the mandatory evacuation today. Whew! Unfortunately, it is headed straight for my daughter. : (

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@windwalker Hooray! No hurricane! Keep my fingers crossed that your daughter and her family won't get affected too badly.

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@windwalker

@ling123 LOL, many people think I live in Florida because I am down there frequently. I only live 2 1/2 hrs from the Mayo in Jacksonville. I am supposed to be down there by Thursday.

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So @windwalker Terri, do you live in Georgia or South Carolina?

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@ling123

So @windwalker Terri, do you live in Georgia or South Carolina?

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@ling123 South Carolina, 21 miles north of Savannah.

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@tdrell

@windwalker ……Terri…hopefully you never got a cold from the neighbor kids so are in tip top shape to evacuate!! As you no doubt know take plenty of cash, medical supplies .batteries and water with. Hopefully have a place to stay….sending the white light for safety ,health and a quick return! Tdrell terri

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@tdrell Still have the cold, darn it. I think the hurricane is going to bypass us. They lifted the mandatory evacuation. I am still headed to Florida on Thurs to see the pre-screening of the PBS Mayo movie.

Liked by ling123

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@windwalker

@tdrell Still have the cold, darn it. I think the hurricane is going to bypass us. They lifted the mandatory evacuation. I am still headed to Florida on Thurs to see the pre-screening of the PBS Mayo movie.

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@windwalker Hi you mentioned a movie in Florida about PBS Mayo movie curious where and what is that about ?

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@windwalker

@526laura Hi Laura. If you click on your picture or name, it should take you to your account. There, you should see a list of options. Click on the 'notifications' option and that will bring up the list of posts. Another way is to tap on 'view and respond' button, then scroll to the top of the page nd you will see numbered blocks with the last one saying 'last'. Click on that one and it will show the last thread. Then click on the numbered ones as you want to go back in that order.

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That was very helpful
Thanks

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