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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
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!
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HugInterested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
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@irene5 Try leaving the 888 off when sending me pm.
@irene5 Thank you for sharing this great news with me. So happy for your daughter and your family. I'm sure you will be able to enjoy the wedding. Your love for your child will beat MAC any day!
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1 Reaction@honeybtorres, Hello Honeyb. Thought I would check in on you. How are you doing? Have you gotten any definitive answers or test results?
I have had bronchiestis for 6 years. What is MAC? My dr has never mentioned it.
Hi @taya and welcome to Connect. You may have noticed that I merged your post into this discussion on MAC. Click VIEW AND REPLY
so you can learn more about MAC and all that it entails.
I also wanted to connect you with other users of Connect with MAC who may be able to share their experiences with MAC.
@windwalker, @sophie1019 and @megan123 all have MAC.
You mentioned that you have bronchiectasis, how have you been feeling? Also, what led you to investigate MAC?
@taya Hello Taya. To answer your question, mac is short for mycobacterium avium complex. It is a nasty infection that people with bronchiectasis sometimes get. This group is mainly comprised of people that have it or have had it. I hope you will read over the many posts that have been written here and on the Discussion board. You will find lots of info on our pages. Keep in mind that not all people with bronchiectasis get mac, though most will at some point in their life. It would be a good idea for you to learn all that you can about it so that you can try to avoid picking it up or learn how to identify it should it ever come up. I wish I had known that hot tubs were so dangerous for patients with bronchiectasis. I feel certain that is how I caught MAC. How are you doing now with your bronchiectasis?
America, hi guys. I have complain a little. The past two weeks I have been so sick. My most beautiful little grand daughter gave me her cough. It’s the worst cough ever! I coughed and coughed until I started coughing up blood. I got mad because this is my time to feel good. I start my Tobramycin again on Sunday. But I know we sometimes stumble but pick up and move again. I have been so week and and tired that I did not even want to leave my house. I will try to be more vigilant now that I know how sick I can get. Thanks for listening Rita
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3 Reactions@america Rita, I'm so sorry you got sick being around your grandaughter who, I'm sure, brings you much joy. I hope you see this message of love and support. For some reason the @ america didn't tag you. Hope today is good for you! Margie
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1 ReactionWell lookie there, it tagged!
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1 Reaction@windwalker Good morning all. I am looking on Amazon to buy an Acapella green PEP device and not sure which one to get. They talk about one you can take apart in 2 sections to clean and another 1 that you don't take apart to clean. I know I've seen this discussed in our threads but i can't seem to use the magnifying icon to look up subjects of interest. That's one reason I tagged you Terri @ windwalker. Another question. Since I'm not feeling comfortable w my doc right now and am thinking of looking for another, what are you guys being told about getting immunization shots for pneumonia and/or the flu? Plz dont suggest I ask my doc!! I've gotten eye,ear exams on my own, a vest and 7% saline and nebulizer on my own!! Thanks and have a great day to all!
Margie