(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.

Sophie | @sophie1019 | Dec 26, 2016

In reply to @kwilbur "There is always a solution isn't there? My best time is afternoon when I really have..." + (show)

My vision is great and,so is my hearing. I go back to the eye doc in February. Also if you hsve a smartphone, my pulmonogist recommended i download the color blindness test, the meds could possibly make you colorblind.

irene5 Irene Estes | @irene5 | Dec 26, 2016

In reply to @kwilbur "There is always a solution isn't there? My best time is afternoon when I really have..." + (show)

Yes, that is correct. I was advised by my doctor to download the colorblind test as well. I am required to go for an eye exam every six months. Irene

marier | @marier | Dec 26, 2016

hi my name is marie i also have mac and am looking for help i live in tampa fl and i have no-one that can help me any suggestions

marier | @marier | Dec 26, 2016

In reply to @debbiec "Local South Florida pulmonologist has confirmed MAC. Treatment to be discussed at next doctor's visit. Internet..." + (show)

hello my name is marie i also live in tampa and looking for a dr i also have mac can you help

lindam272 | @lindam272 | Dec 27, 2016

In reply to @kwilbur "There is always a solution isn't there? My best time is afternoon when I really have..." + (show)

I did that yesterday, thanks to this group!

lindam272 | @lindam272 | Dec 27, 2016

Marie - I just joined this forum also and live in Arizona so can't help from that standpoint. The woman who started this forum is on vacation until early January. I began here by reading all 19 pages of posts. A bit daunting, but I did it over the course of 3 or 4 sittings and took breaks when I felt overwhelmed. I just finished yesterday. There is a ton of information here that will help you. I "favorited" the links to further information and resources, put the items that might be helpful for purchase on a wish list on Amazon (have since ordered pretty much all of them!) and just focused on the discussion. Now I will go back and read the additional information. I will do what I can to help until someone in the FL area jumps on here. You will probably have most of your questions answered through the posts. This is a very supportive group. You are not alone now! You have a bunch of people here to help you. Peace and Love, Linda

Colleen Young, Connect Director | @colleenyoung | Dec 27, 2016

In reply to @kwilbur "There is always a solution isn't there? My best time is afternoon when I really have..." + (show)

Hi @lindam272, I'd like to add my welcome. I'm so glad you found us here on Connect's oldest and longest discussion. There's a wealth of information being exchanged, and lots to read -- 19 pages of discussion! As you start treatment and perhaps have questions, you'll find the answers here. If this group doesn't have the answers, they go searching for them. @Paula_MAC2007 @kaystrand @kwilbur @heathert @tdrell will you join me in welcoming Linda?

Colleen Young, Connect Director | @colleenyoung | Dec 27, 2016

In reply to @debbiec "Local South Florida pulmonologist has confirmed MAC. Treatment to be discussed at next doctor's visit. Internet..." + (show)

Welcome @marier. We have a few Floridians on this forum. @cathyt @dixer @boomerexpert @coylemel333 do you have any recommendations for a MAC specialist in the Tampa area?

Marie, you can also call Mayo Clinic Jacksonville for recommendations http://mayocl.in/1mtmR63
When were you diagnosed? Are you receiving treatment?

boomerexpert | @boomerexpert | Dec 27, 2016

In reply to @debbiec "Local South Florida pulmonologist has confirmed MAC. Treatment to be discussed at next doctor's visit. Internet..." + (show)

Hey Marie! If you live near downtown and TGH, or near St. Joe's hospital off Dale Mabry, those docs will be better than the rest in the area - they're a bit far for me so can't access them myself. I live in Palm Harbor and have yet to find someone who demonstrates excellence. I will let you know if I find someone recommendable.

heathert | @heathert | Dec 27, 2016

In reply to @kwilbur "There is always a solution isn't there? My best time is afternoon when I really have..." + (show)

Hi @lindam272 welcome to our group, I hope you can find lots of great information here, MAC/MAI is quite complicated, please dont hesitate to ask us anything, we are all in ths together and help each other along the way.