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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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Yes, thank you. When we lived in the Berlin/Gorham area of New Hampshire from 71 to 86, we did not know to check for radon. Ignorance is bliss! Every house we are looking at to buy now in Connecticut as we want to get back to our family, has high radon when we have it checked. Yet people have lived in these same homes for years and never checked. The sellers always tell us they will have it mitigated, but we are fearful of radon because of my MAC/bronchiectasis and my husband's sarcoid.(probably got that living at chimney level in Berlin). We are losing beaucoup money with each home we have thoroughly inspected and ultimately cancel. We certainly don't want to hasten our demise. Thank you for your response.
Thank you.
Hi, All ---dis the saline a prescription? or something you can get over the counter? Neither my pulm doc nor my ID doc has said anything about it. Thanks - Barb S
Hi, Barb, The saline is a prescription.
@colapyrus Jan, I spoke directly to one manufacturer .. who FINALLY admitted the reason a baby bottle sterilizer was NOT recommended was MERELY because they had NOT done testing on that method! You must do what you feel is right for you .. but I have used the baby bottle sterilizer method for 30 months of inhaled Amikacin nebulizers and now with inhaled Tobramycin. Please others jump in with their knowledge and experience .. I feel once again our Forum is way ahead! Plus I think I remember someone saying at the 2017 Conference they mentioned using the bottle sterilizer method? Hugs to all! Katherine
@lindam272 Linda, here it's about homes being built with groundrock of granite beneath them. As I mentioned, when we moved (1987) it was a HUGE issue and no one bought property without testing for radon. It was quite costly have installed the necessary filters to get rid of it.
JK
@irene5 I believe, from when we were hearing a lot about this, that the filtering equipment you have get installed does pretty much take care of the radon but I too would be hesitant since you have diagnosed problems where radon could make them worse. Here in NH they also test the water because most of us, except those living in the cities, have wells so there can be radon in there even if not in the air of them home. I guess when it is in the water it can particularly do harm when taking a shower or anytime you are running the water where it gets atomized.
JK
Contentandwell, I am 69 also and my doc said exercise absolutely essential for MAC disease, for airway clearance. He is forcing me to get into terrific shape! I have broken hip, bad foot, and bad knee, so the pool it is. I also walk my big dog a lot. I like being skinny because definition shows quickly. i am skinny because of 2 years on the MAC drugs, but other than walking, really slacked off on exercise because of all the joint issues. But now I don't care, I am moving! Anything is better than coughing up blood again. And yes, exercise is good for everything! That's why the Chinese people live to 90's, they never stop moving, working. My parents played tennis, My mom died 94, my dad is 103 1/2!!! We have to move, even when so so tired...
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3 Reactions@unicorn .. Christa You go girl! So proud of ALL our wonderful Community of fantastic Women! Hugs to all! Katherine
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1 ReactionThank you so much for that info. The worst thing I got from the water in Berlin, was giardia. Bad bad and ugly parasite. Thank you again.