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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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@windwalker, Tdrell and Lindam272 Linda, I like MANY of you was misdiagnosed with Asthma for YEARS prior to a correct diagnosis of MAC .. OOOOOH these doctors!! Hugs! Katherine
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1 ReactionHi! I'm new here, diagnosed last January, and my name is Filis. Thank you for this info. I'm also concerned about MAC in bottled water, is it safe to drink and to make ice? What about ice and drinks at restaurant fountains? My doc told me a mixture of vinegar and water kills MAC on surfaces, faucets, etc. anyone else told this? How do you have the water tested for MAC? Thank you-all the best, Filis
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1 ReactionYou never cease to amaze me with all your knowledge and years of research. Thank you beyond words, Terry
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1 ReactionYes indeed, I've seen vinegar mentioned in a few posts as a means for killing the bacteria...If I recall, a 30 minute straight vinegar soak for shower heads recommended...don't remember the frequency. You can check posts or Google it.
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1 Reaction@afcardieri, Fillis .. Hugs! Katherine
From my File Cabinet:
I LOVED THIS NOTE OF SANITY FROM MEMBER @maryjo2sell .. Mary Jo .. Just to join the discussion I think sometimes we can get carried away with prevention and protection from mycobacterium. We can filter our water pipes at home, then go to a restaurant and drink their water and use their ice cubes. We take a walk and pass water vapor from an air conditioner or a beautiful, decorative fountain. We work in our yard and get bacteria from the soil. There is no bubble. We should be cautious, but I don't think any of us truly know how we got our NTM. (non-tuberculosis mycobacterium). I got mine (Kansasii) years ago and was asked did I go to a foreign country. No-and I still have no idea how I got it while my husband and kids did not. I keep my faucets cleaned out and my shower heads, but I just went to a hotel when I went to Mayo. I doubt they cleaned their shower heads! So some prevention is good, but we have to live. (p.s. p.s. from Katherine .. After I read Mary Jo's note I thought about I had just been to a movie the night before .. had a soda out of THEIR faucet with IT'S biofilm and had ice cubes from THEIR machine .. had not even thought about it! Plus had dinner at a restaurant before that .. just think about that .. heavens protect us!! Mary Jo is SO correct in bringing sanity to our conversation!)
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1 ReactionI will obey and stay away from alcohol, will miss my bloody marys, sigh. Thank you, Lindam
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1 ReactionYes, that is all so true. We have gone back and forth on this issue in my house forever it seems. Why did half of my family get giardiasis when we lived on the Canadian border of New Hampshire and half did not? It was a parasite that had gotten into the water system there. We all drank that water. So does that mean that half my family will get MAC because we are, perhaps, genetically predisposed - who knows? I worry about that now because I am so sick with it and wouldn't wish it on anyone, especially my kids. The point is we need to concentrate on living in the present the best we can - and above all try very hard not to let MAC define us!
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1 Reactioncall in a year is what I was told, and the lady on the phone said it could be longer than a year!, thank you, Windwalker
-- Barb
I will not drink.
-- Barb
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1 ReactionWindwalker, I did go find an additional mouth piece and will order more. Thank you all, for these great words.
--Barb S
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