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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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@migizii I think you were responding to me about the study. If you were, when I clicked on the link they asked me to put in my zip code to find the study in my area. We’re you able to do that? Or maybe I sent the wrong link, I might have sent the link after I put my zip code. Maybe you could google the WILLOW study and see if you find something in your area.
Gina
When I click on the link I posted it takes me to the main page. There is a button that says “SEE IF YOU QUALIFY”. When I clicked that button that is where it asked for my zip code.
@sueinmn @jkiemen That’s what I saw also.
@mariierod123 The nearest to you looks like Clearwater. I’m not sure how far that is.
I did that but I live so far away from any of the sites according to the US map I saw that it didn’t let me go on.
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1 Reaction@boomerexpert I live in Clermont.
I live in over 55
Kings Ridge!
Love it here!
Oh my Clermont is an hour away from where I live!!
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1 Reaction@boomerexpert I am going to the Valspar golf tournament in your beautiful city next week. Any chance you are going to the tournament?
@deborahwolf I am not...not big on golf...ironic as my father owned a course in PA... However, I live just 5 mins from Innisbrook so perhaps we could meet for a cocktail one day after the tourney...!
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1 Reaction@janovr glad you love it! I too live in a 55+ community...Highland Lakes in Palm Harbor. Unfortunately don't know where Clermont is...how far from PH?