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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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Yes that is true about the healthy people with that bacteria in them. My ID doctor explained it like this. If your skin were swabbed there would be all kinds of bacteria living on it including staph and strep. That is a far cry from being infected with staph or strep and those resulting symptoms. I am infected with MAC and have MAC disease. That’s the difference.
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1 Reaction@unicorn, Christa, not saying that yours is GERD, (acid reflux) but it certainly could be. Acid reflux caused heart palpitations in me. I was put on heart meds as a pre-caution. I got the reflux under control, and am now off the heart meds. Doing fine now. Sometimes the heart gets stressed if it is not getting enough oxygen and works overtime.
Tell them we need this agent. I also sent a letter to Texas A & M about the substance they worked on with the university of Munich. The one that helps to open Mycoplasma Cell wall so Antibiotic can get in and KILL IT. I got this response. Yes, we continue to collaborate with various groups, including those in Munich to work on interventions for MAI/MAC. This is an ongoing process, but funding has been difficult and time consuming to obtain. We will continue to work on this as funding permits. If you know of additional funding that can support this work, please let me know.
Thank you for your interest in our work.
I hope you all can see this. Who can we press for Funding. the NIH/NHLB institute?? Or does Mayo have a program?
I am 99.9% sure it is from ingestion - e.g. inhalation of those bugs. I am the queen of vacuuming and am sure I have sucked in more than my share of “dust.”
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1 ReactionYou are never alone! And that is very comforting!
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1 ReactionIt is through ingestion/inhalation - but the crux is that it needs a susceptible host which is where we all come in. TB is not dependent on a “susceptible” host. That is the difference between contagious and not. We all have that commonality.
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1 Reaction@ling123 - Mycobacteria avium complex - with avium being the key word - airborne. It's the mist from the shower, misters, water sprinkers, and the dirt in the air. Potting soil is a huge incubator of MAC and I wouldn't be surprised if that was my delivery into my lungs. I love working outside and potting plants. Now I wear a mask to do any kind of yard work or potting that works up the soil. Of course, living in AZ doesn't help from that stand point but it beats Upstate NY. Linda
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1 Reaction@pkayh Hi. To the best of my knowledge, mac germs are everywhere, but are more concentrated (higher colony count) in different places. For example, they usually colonize in warm pipes and resevoirs. i.e. your hot water tank, water in the ice-maker tank and old water filters. There is a link on this site 'How to Avoid reinfection.
Yes and they would have even more sticky stuff in their lungs than we do.
@ling123, I think that disturbed soil increases your odds of inhaling it because people have been known to get MAC from potting soil. There are billions of MAC in one teaspoon of peat. I also learned that pseudomonas can be caught by just touching plants. Wash hands everybody!
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