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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'm not sure about the conclusion that only those who are immunosuppressed get MAC. I think anyone with weakened lung and/or brochi can get MAC. I'm not immunosuppressed. But I have brochiectasis. Although I've only been diagnosed with it 2.5 years ago, I believe I've actually had it for many years prior to that but was mis-diagnosed as allergies. I was also believed to have been exposed to TB in childhood (my skin test for TB is positive) although never developed TB. But that exposure left scarring on my lungs. These are all things that make me more susceptible to MAC than other people without those problems.
I think the word "susceptible" is the most accurate term for most of us. Immunosuppressed applies to other conditions where people get MAC. (e. g. Aids)
This is a great place to reiterate facts I've provided before on the issue of immuno-compromised vs. non in the contraction of NTM's - although it was most prevalent in HIV/AIDS patients with compromised immune systems, NTM's are now found in persons with healthy immune systems. This means that it has grown stronger over the years, and no longer needs a downed immune system to gain a foothold. For me, this is why we need a registry, just as the one currently in effect for NTM's cousin TB; docs & researchers must get a more accurate handle on how quickly this is spreading, and more of the general population.
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1 Reaction@boomerexpert You are right. When I was first diagnosed with MAC, I did a lot of google search to find out about it. Most of the search results pointed to HIV/AID patients as the victims of MAC. So obviously the medical community is probably still holding that belief and consider people like us, who do not have AIDS or are not HIV positive but have MAC as some kind of exception..
@katemn and to all: ambroxol mucosolvan can be purchased online from the Philipines: http://www.muramed.com/store/detail/ambroxol-hcl-mucosolvan-tablet
@ling123 - there's a bit more to it. It was found in HIV/AIDS patients first in the 90's - then it was found in others with compromised immune systems like those with RA/Lupus/Crohns or who have been on immunosuppressing chemo treatments - now it's infecting people with no history of being immunocompromised. It's spread and voracity are growing, with no concomitant surge in research.
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1 ReactionI checked it online and its $0.88 per tab.
hi Katemn.....during my visit to have my situation evaluated at NJH in January.....and when they concluded my issue was GERD....not an NTM/ MAC infection they gave me new fluid guidelines......whereas for 30 years as part of my Asthma protocol, I always drank water to flood myself and my thick mucus with.....BUT since the test at NJH showed l did not have asthma, but that my GERD was causing mischief in my lungs, I now have to carefully limit fluid intake....especially before bedtime with aspiration of gastric contents into my lungs more likely. And interestingly my mucus continues with the same consistency .Tdrell
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1 ReactionCheck this like its a site that sells ambroxol http://brandmedicines.com/index.php?main_page=product_info&products_id=659
windwalker....before mid/later 40's options for folks with TB were so limited. Rest and fresh air and proper nutrition and not getting other diseases were about all a person with TB could do......if people could not "get to the mountains" for all of the above....into the Sanatoriums.....I recall driving by one in Chicago in the 50;s....a huge place.....by then no longer in use thanks to the antibiotics that came out mid to late 40's . My mother ...an RN...would tell us that as student nurses in the 30's, they would be assigned to care for TB clients there....and all the masking and isolation gowns they would have to don. Where was your grandmother in the Sanatorium???
someday if you have nothing else to do....look up on NJH site their "history" ..thought it was interesting. Tdrell
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