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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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@alleycatkate I did evacute 2 1/2 westward to Augusta, Ga. We got zero hurricane effects in my little town of Bluffton. Most people here did not evac. I don't take chances. I am relieved for those of us who were spared. Now concentrating on sending relief to the Bahamas.
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5 Reactions@windwalker Terri, Ive been delinquent and haven't been on this site in a while. However, I thought of you because of the hurricane, so I came by. I'm really glad you were ok.
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2 Reactions@lorifilipek We are fine. Thank you so much for thinking of me. How are you doing?
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3 Reactions@windwalker I've been holding steady without needing antibiotics. I'm exercising most every day and working in the yard in Michigan as my "meditation." The dirt doesnt' seem to be bothering me (yet). How are you? Are you still bicycling?
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2 Reactions@windwalker What a relief to hear that your town was not affected by the hurricane. Thanks for letting us know.
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1 Reaction@windwalker ,,,,,,Terri smart not to take chances,,,glad it all worked out,,,,still lots of stress on the mind and body...lay low and pamper your self...tdrell
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1 ReactionHi everybody, I hope you are all doing well. I haven't heard from some of you for a while -- @america how are you going Rita? I think of you often (we both have hypothyroid and primary immunodeficiency to contend with as well as MAC/MAI).
I wanted to ask everyone / anyone if you also had problems with cholesterol meds being really affected by Rifampin? None of the Statins or Ezetimibe work anymore for me while I'm on the big 3. My cholesterol levels are now very high and my general doctor doesn't know what to do about it. Has anyone had this? (Rifampin can definitely cause it). What did you do about it? I would appreciate any help you can give me, Annie
Hi Terri and everyone! It’s been so long since I’ve been here. But I just want to say that I am doing great!!! I have been so much better for the last 2 months!!! I hope you all are doing good or getting better every day. Hugs to all Rita.
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4 Reactions@anniepie ..Hi Annie...you may hate my suggestion but it is how I control my high cholesterol without any medication...It brings my very high numbers down to just borderline. Cut out all animal products, all dairy products...all fat except a good 1st press extra virgin olive oil. (hard to find a real one but California Olive Ranch extra virgin is one at Walmart and Costco's own brand, Kirkland extra virgin olive oil is another...cold pressed) If you can eliminate all of those foods with processed oils/butters/fats and animal meat/fat, you should be able to bring your numbers down naturally. It may seem drastic especially if you have a typical American diet...but you will be healthier too. My x endocrinologist fired me cause I refused statins. Not only did I control my cholesterol levels naturally, but my (Graves disease) hyperthyroidism also resolved itself. So...haha no need for my pushy Doctor!! 🙂 Good luck ...I hope you can get it worked out. Kate
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3 Reactions@america Great to hear from you Rita. Good news -- hugs to you too