(MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS

Posted by Katherine, Alumni Mentor @katemn, Nov 21, 2011

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:

  1. Document Title Example:  Mayo Clinic Connect MAI/MAC Information
  2. 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
  3. 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!

KateMN

@windwalker

@america Awe, Rita, I am sorry you got sick again. You were on a good upward trend. Children can be our krytonite. You are not alone. I have a lung infection that came on last week. I was doing fine until I started back on the toby. This go around, it gave me a cough and irritated my lungs to the point of green infection setting in. My head hurts non-stop and I have chills. I stopped the toby and I cannot reach my dr because he is out of town. I hope we both get over this crud fast. Hugs – Terri

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@windwalker terri…soooo sorry you have been stricken with the green grunge….have you reached your Dr yet?? Please take care and scale back on ALL activities. Terri aka tdrell

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@irene5 …sooo sorry you were so sick at the wedding…but you certainly gave it a try….what a wonderful family/support system you have…take care terri aka tdrell

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@margiebanks

@alleycatkate Haha I actually laughed out loud on your last statement! Thanks for your excellent tutorial re cleansing. I knew you had the green but didn't know which one. Did your doc advise this 2 piece Acapella PEP instead of the 1 piece so you could disinfect it better? Just curious.Thanks Kate!

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@margiebanks Margie…My Dr did not favor either the one or two part acapella. The 2nd piece is just the removable mouthpiece so I would not think there would be a whole lot of difference between the one or two part acapella. I just went with the more reasonable $ one. Kate

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@alleycatkate Kate, I was leaning towards the Acapella based on price too. Another nagging thing…I haven't been diligent w disinfecting my nebulizer each and every time. I need to try and do better w that and a PEP. Looking back at previous posts (if I were tech savvy I'd share) I found info about using a baby bottle sterilizer and more info on the Aerobika. I just bought one on eBay for 34.99 total. Unopened and by the manufacturer Monaghan, looks like the real deal. They are double the price thru an Rx and I'm winging it here! I'll let ya know how it all works out! (Was so excited to find it at a decent price I forgot to look at the bottle sterilizer) Anyway, thanks for always getting back to me and sharing info!
Margie

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@margiebanks Margie….I have been just tossing my nebulizer into a pot of boiling water after each use. It's the acapella cleaning that is a little much. I had seen the suggestion for baby bottle sterilizer before. Certainly more of a draw now with the acapella. I will be curious to see your response to the acapella. It does a great job in removing phlegm that I am dead sure I would not be able to do on my own.

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@heathert

@helem Helen I totally understand the germ freak thing, others do not understand at all but we have to avoid germs totally. My daughter has a cold and I am very concerned, washing my hands alot and wearing a mask.

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So nice to hear from you. I found all of the updates in junk mail! Please stay well. I try to think if I get sick I’m not normal like other people. I’ll cough for three months.

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@taya

What about the shingles vaccine? It is very expensive, is it worth the $?

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If you’ve ever had shingles, you would get the vaccine. It can go into your eyes and it is VERY painful for some people.

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@macjane

I love how you think!!!!!!! Jane

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Thanks so much! I am trying to find my way!

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@windwalker

@irene5 Try leaving the 888 off when sending me pm.

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Have you heard about the new FDA approved medication for MAC called Arikayce?

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@jasmine321

Have you heard about the new FDA approved medication for MAC called Arikayce?

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What is it?

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@jasmine321 Yes I was in the trial for Amakacin inhaled and I think it is called Arikayce. I think it did a good job while I was on it, I had a clear sputums finally.So glad it is approved. It was easy to take.

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@alleycatkate

@margiebanks Margie….I have been just tossing my nebulizer into a pot of boiling water after each use. It's the acapella cleaning that is a little much. I had seen the suggestion for baby bottle sterilizer before. Certainly more of a draw now with the acapella. I will be curious to see your response to the acapella. It does a great job in removing phlegm that I am dead sure I would not be able to do on my own.

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@alleycatkate that's a great idea! I nuked water in a big bowl until it was boiling and put a little soap and my nebulizer parts in. Also, started putting the mouthpiece deeper into my mouth when breathing so the saline wouldn't be lost catching on my tongue. I'm finding I have a more productive cough this way.
Margie

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