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.

sounder27 | @sounder27 | Nov 1, 2019
In reply to @rits "Candy, Tues, Thurs and Sat. (Coughing up gook this a.m. from last night's treatment). I didn't..." + (show)
@rits

Candy, Tues, Thurs and Sat. (Coughing up gook this a.m. from last night's treatment). I didn't want to take it on M,W,Fri when I take the oral antibiotics.

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rits Thanks

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america | @america | Nov 1, 2019
In reply to @pfists "@american Rita that's great news I'm so glad your feeling better! Shari" + (show)
@pfists

@american
Rita that's great news I'm so glad your feeling better!
Shari

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Thanks!! How are you? Talk to you soon 🙂 Rita

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migizii | @migizii | Nov 1, 2019
In reply to @rits "Thanks for the link! The second speaker, Dr Pamela McShane, U of Chicago, is my doctor." + (show)
@rits

Thanks for the link! The second speaker, Dr Pamela McShane, U of Chicago, is my doctor.

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I was at the training and she was excellent! You are very fortunate to have her as your doctor!

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Nov 2, 2019
In reply to @anniepie "Thanks Judy @judyhodgern ! Your reply is really appreciated. I almost laughed and cried when I..." + (show)
@anniepie

Thanks Judy @judyhodgern ! Your reply is really appreciated.
I almost laughed and cried when I read the facial skin and eye discoloration can be long lasting when taking Clofazamine and -- laugh or cry -- it affects between 75% and 100% of people who take Clofazimine. I mean -- where do they get all these awful drugs from to treat NTMs???? (Laugh). We really do have to put up with a lot and my heart goes out to everyone

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@anniepie, @judyhogem, Hi all. Just want to add that not all drug treatments are horrible for everyone. My treatment plan had zero side effects (can click on my photo icon to read about mine). Depending on what your susceptibility tests show, you may not need the harsh meds to treat mac. I have tested negative for three years now.

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1 reply
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Nov 2, 2019
In reply to @rits "Thanks for the link! The second speaker, Dr Pamela McShane, U of Chicago, is my doctor." + (show)
@rits

Thanks for the link! The second speaker, Dr Pamela McShane, U of Chicago, is my doctor.

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@rits Hi. Thank you for posting the video with Dr. Pamela McShane; you are so lucky to have her as your physician. I found the video interesting and easy to follow.

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2 replies
rits | @rits | Nov 2, 2019
In reply to @windwalker "@rits Hi. Thank you for posting the video with Dr. Pamela McShane; you are so lucky..." + (show)
@windwalker

@rits Hi. Thank you for posting the video with Dr. Pamela McShane; you are so lucky to have her as your physician. I found the video interesting and easy to follow.

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I cannot take credit for posting the videos which were shared by tdrell. I was referred to Dr McShane by another outstanding pulmonologist at the U of Chicago when my sputum sample came back positive for MAC. Yes, I am very lucky to have her for my physician. In addition to her doctoring, she is so optimistic that I told her that I was going to record her if she called again. She had called to reassure me with respect to a scary fungus (mucor) which showed up in a sputum sample. We have a great rapport and I think people can see from her video that appointments with her are not only productive but fun.

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2 replies
Brenda R. | @brigby | Nov 2, 2019
In reply to @rits "I cannot take credit for posting the videos which were shared by tdrell. I was referred..." + (show)
@rits

I cannot take credit for posting the videos which were shared by tdrell. I was referred to Dr McShane by another outstanding pulmonologist at the U of Chicago when my sputum sample came back positive for MAC. Yes, I am very lucky to have her for my physician. In addition to her doctoring, she is so optimistic that I told her that I was going to record her if she called again. She had called to reassure me with respect to a scary fungus (mucor) which showed up in a sputum sample. We have a great rapport and I think people can see from her video that appointments with her are not only productive but fun.

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@rits Hello, I had Mucor show up in a sputum sample too, but doc thinks it was just a contaminant (since I’m not deathly ill). Let’s stay in touch.

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1 reply
tdrell | @tdrell | Nov 2, 2019

@rits...when l googled Dr McShane....it read that she is in Marquette Michigan also?? That is ...if accurate or up to date a long long commute....what do you know about it??? curious...tdrell

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1 reply
tdrell | @tdrell | Nov 2, 2019
In reply to @windwalker "@rits Hi. Thank you for posting the video with Dr. Pamela McShane; you are so lucky..." + (show)
@windwalker

@rits Hi. Thank you for posting the video with Dr. Pamela McShane; you are so lucky to have her as your physician. I found the video interesting and easy to follow.

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@windwalker ….was not sure how to list the link to the 2019 NJH workshop videos....so that members would see....if you are able to...would appreciate ...my tech skills are atrocious. take care...be well...thanks....terri @tdrell

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1 reply
rits | @rits | Nov 2, 2019
In reply to @tdrell "@rits...when l googled Dr McShane....it read that she is in Marquette Michigan also?? That is ...if..." + (show)
@tdrell

@rits...when l googled Dr McShane....it read that she is in Marquette Michigan also?? That is ...if accurate or up to date a long long commute....what do you know about it??? curious...tdrell

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I don't see anything in her profile (uchicagomedicine.org) that mentions any location other than U of Chicago in Hyde Park. Must be another doctor.

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