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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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@jkiemen Thanks for replying. Fatigue is an understatement, laugh. All the best with your scans in March Jo Ann.
I saw my doctor yesterday and my blood tests show my thyroid T4 is down -- I have hashimoto's hypothyroidism. This is probably making the fatigue even worse. We're waiting 3 more weeks to do another test, then if it is still down we'll increase my usual dose of levothyroxine. It's the Rifampin/Rifadin that does this -- but it can be fixed with dose adjustment of the thyroid meds. It shows how important it is to get your thyroid levels checked while on the big 3!
Hi all, I am new to this forum and sure could have used it months ago. I have read through many of the posts and I am blown away by the wealth of knowledge contained here!! I have been on the Big 3 for 17 months today...I am seen my a local pulmonary doctor and after my visit with him last week, I have to decide if I want to go on the inhaled Arikayce with him managing my care or do I want a second look with someone at National Jewish Institute. I had another on bronchoscope in September and was called right away to say the infection is still present. After going over the sensitiviy results last week, it shows the infection is not immune to Rifampin, Ethambutol, and Azithromycin so far. I guess that is good news. Just wanted to say hello and thank you all for your honesty and generosity in sharing your personal journeys with this crazy lung disease.
Take care, Yaggi01
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2 Reactions@yaggi01 I had exactly the same as you, on the big 3, 2 years and infection still there, bugs not immune to big 3, I then went on Amakacin and became bug free, went offAmakacin but stayed on big 3 and last scan nodules returned. I am thinking Amakacin inhaled worked for me but time will tell. Good luck.
@heathert thanks so much for your reply!! I am very encouraged by your reply and I will pray that the new inhaled antibiotic has been the heavy hitter you needed!! I have a month to decide if I just go for it with my regular pulmonary doc or go for a second opinion. Lots of thinking and researching in the next month. Take care!!!
Yaggi01
@yaggi01 Yes for me I think it worked, with very little side effects. Take care
I am in month 6 on the big 3 - I find the overall fatigue has improved, but I still have to modify my activities. Now if I try to do too much in a day, or on successive days, I hit a "wall" of fatigue that just stops me in my tracks. Still trying to figure out the weight loss piece, I have no appetite, and most days wouldn't remember to eat if my husband didn't remind me. Even with whole milk or cream blended into my coffee concentrate, smoothies, cheese, yogurt and other high calorie snacks, I am down to 106 and still losing a pound a month.
@sueinmn Hello Sue. As the mac gets beaten down; your weight should come back along with your appetite. Have you discussed the weight loss with your dr?
@sueinmn Also, have routine sputem tests for pseudomonas. That infection is what took my weight down fast. That does not take long to grow and you can get an answer fairly quickly. When was your last sputem test?
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@yaggie01 Hi there, and welcome to our group. I was happy to see that you have read many of our posts and are gathering your information. It is the smartest thing you can do. You will find that YOU will be your own best advocate. Are you able to navigate our site alright? Do you know about using the Discussion Board to find topics? Or entering key words in the 'search' box at the very top of this thread? I am here to help. I am glad that you are going on the Arikayce. Meds delivered straight to lungs are supposed to be better for your body. I didn't really get well after 10 yrs of being extremely sick; until I was put on inhaled tobramycin. That was my magic bullet. (Btw, I never got on the Big 3). Will you please stay connected with us and report back how you do on the Arikayce? Thnx!