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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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HugInterested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
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I was diagnosed with bronchiectasis in 2012. Had MAC in 2013 and took 3 antibiotics for a year. My pulmonologist ordered sputum culture last week because I’ve been having dry and sometimes productive coughs for a month. I have MAC again. My chest X-ray looks worse than the last one taken 3 years ago. What can you say about lung lavage?
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1 Reaction@jasmine321 Hi Jasmine, welcome to our Connect group. Well, that is certainly disheartening news after having been on those antibiotics for a year. I believe you when you say you have mac again, but I am curious how your dr. got such a fast diagnosis? It takes 6-8 weeks to culture a sputem sample and you mentioned that you had the sputem test done last week. Have you had a chance to read over some of our older posts or read our topics in the Discussion Board? It is located on the 'Mac and Bronchiectasis' home page. There is a wealth of info in our threads (conversations). My next reply to you will be about lavages.
@jasmine321 There several members on thos site who were treated successfully with lavage. @pfist (Shari) I believe is one of them. Are you familiar with the procedure? I know that it is done with bronchoscopy and they squirt a small amount of saline into your lung and then suction it out. It is a lung cleanse of sorts to remove phlegm (and with it, mycobacterias) and mucous plugs. It is sometimes used for people who have the type of mac that causes cavities in the lung. How confident are you that your doctor knows how to treat this disease? Do you know what specie of mac you have?
@america Wow girl, you made my night! It's all about proper care and attitude. Big hug!
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1 Reaction@windwalker888 Terri I had lavage done - no success for MAC removal, but I am just one person.
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1 ReactionMy doctor is a very good pulmonologist. He told me he is considering bronchoscopy. My sputum culture is growing Mac aveum. From what I learned, treatment is a cocktail of antibiotics, around 3, and duration of treatment is at least 12 months. I guess recurrence is always a possibility.
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1 Reaction@jasmine321 Mine grew the same. I started the Antibiotics about 2.5 years after the diagnosis. I am on month 11 of treatment. I think my Pulmonologist would like up to 18 months if tolerated. He says the bacteria is so slow growing that you need long term antibiotic to catch all the bacteria in its various stages when susceptible. So far tolerating with occasional stomach aches and fatigue. I am still working full time with it.
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1 ReactionAre you taking anything like probiotics, to help prevent effects of long term antibiotics?
@jasmine321 always, and from only a wellness center or natural food store...not the poor quality stuff found at the supermarket or drug stores...
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1 ReactionThank you. I’ll follow your advice