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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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Thanks so much
Thanks so much I’m going to check it out
👍 thanks I will check this out
Thanks so much @poodledoc -- I have now written to BeyondAir about this trial. I will let you all know what happens if I hear back. Annie x
Hi Terri @windwalker. I'm back now. (Sorry I haven't been online for a while. Fell off the horse -- as they say -- but I'm trying to ride again!) The Pulmonologist had me start back on the drugs at a lower dose at the moment. Unfortunately nearly all the TB / NTM drugs can cause long QT heart problems in susceptible people. And my Cardiologist says it's inevitable I will get long QT from the drugs again. So my primary care doctor is now monitoring my EKG every week. It has been a very tense time for me. (Should I continue with the drugs when I have refractory NTM now anyway, and these drugs could make my heart stop at any time???).
I am taking the drugs but having a few days off for Christmas!
What a year! Hope everything is okay for you -- please take care
Love from Annie x
Merry Christmas, everyone! Hope next year is better than this one!! @anniepie, my best wishes to you. Please take care!
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3 Reactions@anniepie Oh, Annie...what a dilemma. I hope you can work out a medication regimen that you feel comfortable with. Good luck and my best wishes to you. Kate xxoo
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3 ReactionsWhat a hard decision! I will say that when I was on the meds, I did stop for a few one week intervals, with the docs' blessing, to allow my body to recover a bit. No heart issues, but fatigue and nausea that made life miserable.
Good luck with being able to tolerate, for a time anyway, to get things back on track.
Do you also neb with 7% saline? I think this has kept my MAC at bay for the past year without more antibiotics.
Sue
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3 Reactions@anniepie I have just been diagnosed with the long QT issue, my QT was 458 and now it is 478 so I have been having lots of tests, I go back to cardiologist on 15 Jan to get results. These drugs are very hard on us, but also can save our lives. I did not know they can make your heart stop, that is scary. We are in this together Annie. I will let you know what happens. Take care Heather
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2 ReactionsHi it’s jennifer what is Qt issue and please tell me what made the head stop omg please take care of yourself and let us all know how your doing