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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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@windwalker Terri, it is very possible. I used to cough a lot and had to carry water wherever I went. Then I went through months of allergy shots and the coughing subsided significantly to barely noticeable. The interesting thing is that it didn't come back when I was diagnosed with MAC 5 years ago. But it came back earlier this year and has reached a level almost the same as I had years before. I don't know what is going on. The only thing I know is that I feel very healthy still and nothing else has changed for me physically. I have an followup appointment with my pulmonologist in December. If there is no change in my lung condition by then, I'll be happy to just live with it because I know that the allergy shot treatment must have worn off by now and there is not much I can do about it.
I have an adjustable bed...no coughing here...
@ling123 For what reason do you not do another round of allergy shots?
Windwalker. Thanks so much for your good wishes. I have had a little setback with the Arikayce treatment. After 10 days I spiked a fever for 2 days with a rusty/Smokey cough and headache that lasted about a week and a half. Pulmonologist wasn’t sure if it was a reaction to the Arikayce or a virus. He advised that I wait until symptoms subsided and then try the Arikayce again which I will be doing this week.
@windwalker Thanks so much Terri I would miss all of you also if I left, so I will not be leaving.. You and I definitely go way back ,along with others on this site, you are all like family to me and have helped me no end along the way. Being able to help others with MAC-MAI is also wonderful, I know how I felt when I was diagnosed, so scary. Right back at cha with the love and appreciation!!!!!!
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3 Reactions@sounder27 All the best with restarting the Arikayce, hopefully it was a virus.
@sounder27 How long have you had these allergies for , just while you have had MAC or longer
Heathert. I was diagnosed with bronchiectasis and Mac about 5 years ago after a cat scan for a possibly perforated esophagus. I had been coughing and short of breath for a year or so, which was attributed to post nasal drip and my afib. As far as the allergies go, I’ve had them for many years ...well before I was diagnosed with Mac. Especially have trouble in large gatherings when people wear colognes. I also have sensitivities to foods and many antibiotics. I use fragrance free everything...soaps, detergents, and all natural clothing and bedding. Unfortunately, my condo has carpeting in the bedrooms and it is a costly proposition to put in hardwood floors. Won’t be doing that for awhile.
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2 Reactions@sounder27 thank you for that. Everything else complicates what is causing what. Very tricky for us.
I have gone through the "build-up" phase and the "maintenance" phase. The whole process took about 5 years to complete. I don't believe you can repeat it and receive better or even same result. And I doubt the doctors would even let me repeat it. I understood from get go that the treatment might or might not work and, even if it worked, it might not last forever.
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