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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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I'm working on the latter...Publisher's Clearinghouse Sweepstakes...
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1 Reaction@irene5 That's what I assumed. The key is the "susceptible host". And we certainly are. I think TB is contagious because someone with TB can give it to another without getting it directly from the environment (water, soil, etc). MAC doesn't go from person to person. Anybody who is susceptible can get it independent of another person as long as the environment is there. That is my understanding of it.
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1 ReactionYou better win
That’s funny! I waited for years for Ed McMahon to pull up in my driveway!
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1 ReactionI also have another rather rare disease - Anklyosing Spondylitis - a type of arthritis not heard of often. Those AS people have gotten together, made a newsletter, and collected enough money (from sufferers, I think) to fund some research. They have found several genetic markers.
My understanding is there are over 100 varieties of MAC types of bacteria. They normally live in the environment, not in people. There are many antibiotics in nature and the MAC become good at becoming immune to various antibiotics as they encounter them, so when people with MAC take antibiotics, the bacteria can quickly become immune to them. The hope is to find one they can't become immune to so quickly.
Yes, you are right, but the air contains dust, which is soil (especially Arizona, where I am) !
Yes, I add about 1 ml saline to the 3 ml albuterol 4 times a day when I use my nebulizer. I'm not sure how much saline to use. As far as art, I have mostly done watercolor, but have done some oils and acrylics. It's a hobby that is compatible with sitting.
Hi Jen, I am also in the medical field and I think like you. My mother has been diagnosed with MAC/MAI with the bronchiectasis. There is a child a week being diagnosed with just the bronchiectasis in New Zealand , most of them from the surrounding islands. The doctors are saying that now they are susceptible to get MAC. From what I have read bronchiectasis is : the lung damage (cilia) that prevents or inhibits you to cough up and out the bacteria around us. So the bacteria- Avium complex (depending what bacteria is found and if its MAI or MAC) sits in the sputum, mostly in the middle or lower lobes and GROWS. Now you have MAC/MAI. This reminds me of MRSA, and other "opportunist bacteria" that are all around us, but now people's own immunity cant fight it any longer. I want to know what is damaging the lungs to fight this off. My goal is to get patients to fill out more information who are diagnosed with this, to find a connection. The kids in New Zealand have had whooping cough and other "child" ailments that lead to the cilia damage or bronchiectasis. hmmm.
Yes, you sound a lot like me. Do a little, rest, do a little, rest, etc. I am in a stock club, too. I do go once a week to a painting group, but I don't seem to paint at home. The trouble is, even though these activities involve sitting, you always have to get up and get something. It's the same with cooking. Fortunately, my husband does most of the cooking. I have to spend a lot of time with my breathing activities - Vest machine, nebulizer, Acapella, cleaning equipment, exercise (I force myself to go to the Fittness Center, but it exhausts me). But I fear if I don't I will be able to do less and less.
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