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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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The first trial for home use using Nitric Oxide for chronic resistant NTM/MAC starts in Jan 2021, first results expected 6 months later. Keeping my fingers crossed for success with this new therapy. https://www.beyondair.net/news-media/press-releases/detail/127/beyond-air-initiates-patient-screening-for-lungfit-go
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7 Reactions@poodledoc Yay! Thanks so much for posting the article! Fingers crossed here for everyone!! Nan
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3 Reactions@poodledoc Made my day! Thank you for that info. Fingers crossed! irene5
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3 ReactionsYes this study is a really big deal, in particular for those of us with colonized m. Abscessus!
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2 Reactions@poodledoc Thank you!
Poodledoc, Wow! That is awesome news!
Hi my name is Jennifer I’m 54 and I was just diagnosed with Mac I don’t know much about it, however my Dr put me on Arikayce I took my first treatment today I’m nervous about this whole thing my dr says I need to be in this every day for at least 1yr to 18 months . Can anyone give me some advice on anything they know about this lung disease and medicine if you’re have for me I would appreciate it a lot thanks so much 👍
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1 Reaction@jr2366 welcome to this knowledgeable and caring group. I am sorry you were diagnosed with MAC but glad you found Mayo Connect. I don’t know much, but I know Arikayce is taken after other treatments didn’t work or the patient was unable to tolerate the Big 3 as the medications are called. Arikayce requires training with a nurse and is very expensive. I have never heard of someone being “ put” on Arikayce. It’s a big deal! I had to fill out paperwork with my ID doctor and be ok’d by the company for the trial. And then I had to be be trained virtually by a nurse on how to use it. You said your doctor “put” you on it. Are you seeing an ID doctor? I read your posting like four times to make sure I read it correctly. When I was first diagnosed with MAC I went to a pulmonologist and then an infectious disease doctor. I am perplexed. Do you have symptoms? Again- welcome. You will find lots of answers here. irene5
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1 ReactionHi Jennifer, I will repeat Irene's welcome to Mayo Connect. We are a community of people living with a great variety of conditions. We share our experiences and help each other along the way. We are not medical professionals, and do not give medical advice, but do talk about our challenges and successes.
I agree with Irene that it sounds unusual to begin treatment with Arikayce, can you please tell us about your symptoms, how you were diagnosed and what the doctor told you about this treatment?
Sue
@jr2366 dear Jennifer, welcomeon this sight! We all have our own experience! It would be a good thing if you can share with us your symptoms and if you had any other lung problem before. It would be easier to share our experience with you. I wll keep you in my prayer! Nic!
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