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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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I just got the book too.. excited to read it to help my mom 🙂
Carmen
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2 ReactionsQuick question. So been back and forth with my mom with her doctors in the meds for Mac. So now they're doing the two week intervals but she just started the Rifampin on Friday and this is the pill that is making her really really sick she lost 3 pounds in 3 days getting fever so I call the nurse and she suggested to stop that pill. So I got to wait for the doctor to call back but I'm guessing that maybe they'll replace that certain pill with maybe it different antibiotic. I'm just a little concerned because I know that these three antibiotics are the ones that work with treating mat so if she gets one switched his it harder and even possible for her to be treated still just wondering if anybody here has had that specific pill replace and his okay on it?
Thx, Carmen
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1 Reaction@lbigboy, Linda I just LOVE that! "My husband and I chose JOY in the midst of our circumstances." You are way ahead of my husband and I .. all we can get to is DENIAL .. that has worked well for us .. but MAN .. JOY is SO much better .. good for you! YEAH! I am going to work on that .. I really like that! I am a positive person but have never looked at it that way .. kinda tough in some of life circumstances .. BUT something to work towards .. thanks for the thought! Hugs! Katherine
@ilgrp4e there is an inhaled medication given when others aren't working properly: Amikacin - ask about it when next w/doc
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2 ReactionsHard to operate with a splitting headache for sure. Simply put: Folks with autoimmune disorders, & folks taking drugs that suppress the immune system (like chemo, and drugs for RA) I believe to be the most likely to acquire a MAC infection (for these folks, it's considered an opportunistic infection). However, in the past few years, folks with healthy immune systems have joined our little club (aren't they happy....) so MAC now, officially, impacts anyone anywhere, regardless of immune status.
Boomer, you'd think that soon, MAC would get more attention and research money now that REGULAR people are getting it! It would be so interesting to know what the real numbers are. I wonder since it is very different for everyone, (cavities and nodules are SO different) if it isn't many different diseases, and they just don't know yet. I still believe if all were right, they could cure NON Tubercular Mycobacterium like they did Tuberculosis. TB was more important to cure due to being contagious. If MAC was found to be contagious would they find a cure? I sort of think so!!Thanks for listening.Kay S
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1 ReactionI agree kaystrand. MAC isnt even on the top 12 bacteria that needs to find new antibiotics for, we need to get it on that list!Wish I knew what to do about this except getting the word out. I do wonder if the cavities are caused by reflux and then the bugs get in.Hopefully we will get more information quicker now katherine has started this fantastic forum. Most of us have had reflux and nose problems, I wonder if the docs even know this.
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2 ReactionsThe book is fantastic!So much great info. But I am struggling with the no sugar bit.
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1 ReactionIt's categorized as an infectious disease meaning it's transmittable...b/c it's not a human to human transmission it's considered less dangerous...that's what we must work to change.
@irene5, Irene love that positive self talk .. you go girl! Hugs! Katherine