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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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Thanks @nick52 I will have a look at the site, I know it all works for me. 🙂
https://www.google.ca/search
Dear fFollowers,
I am a little confuse when I read your results on Sputum test. According to my lung Dr. These sputum tests are not that accurate. I ask for a test because of what you are all ,talking a lot about it and my result was negative. As you know result of my
lab test after a bronchoscopy was positive for a MAC 3 years ago. This summer the sputum was negative and in the fall I had a bronchoscopy. As you know I am and never been on the antibiotic cocktail since the discovery in 2009 after a severe pneumonia. Tomorrow
i have my last appointment before we leave for Florida and I should get my result of the bronco lab test in sept.
I feel so lucky to live in Canada. All our medical service here are all free of charge because our government cover all cost. It is a privilege. I sympathise with you who have to pay 5000$ for test. Wow!
thank you, making a list, too bad someone doesn't have a sensitivity test for these types of things
thank you, now looking at Naet test
darn it, I was afraid chocolate would be one - adding it to the list
I have sinus infection so getting a new nebulizer -- maybe that will hope. I cough so hard my insides feel like they are ripping. I make it 1 to 4 minutes only. Even tried taking a break but no luck. Thank you.
Thank you, Nicole - that is a lot of good information. If you don't eat eggs for breakfast, what do you eat?
Thank you - so thankful for all this info. I will try to do better at visiting. Jacksonville, FL, Mayo Clinic's pulmonary group is not taking appointments, sigh. They are suggesting Lakeland -I call every 3 weeks to Mayo Clinic. I am again on 3 big antibiotics, now a sinus infection so prednisone regiment and antibiotic amox for 10 days. Just seem to be weaker every time.