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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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keep it coming@justjanet its making me hungry which is a good thing! Ice cream definitly works, my hubby was addicted to it , a large plate a night,and when he stopped he lost 6 kilos!
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1 ReactionHey heathert! With those darn critters in us .. we need to find some fun in this process! Whatever it takes .. we will do it .. with a chuckle along the way! Sending you a hug! Katherine
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1 ReactionLove ya Janet! We are indeed partners in crime! Katherine
Janet. Very generous of you. I will check out the list.
@tdrell, just an update ...
The two days (Thursday & Friday, September 15th & 16th, 2016) before your conference on Sept 17th, there is a conference at the same location for health care professionals who diagnose and treat patients with Nontuberculous Mycobacteria (NTM). Here's the link
https://www.nationaljewish.org/Calendar/2016/2016-NTM-Providers
So lots of information going around!
Paula
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1 ReactionTerri, thank you for this very good advice. Flib<br><br> <br><br> <br><br> <br> <br><br>
Boomerexpert...are there specific questions you would like me to ask at the conference if time and format allow?
Yes, Terri. What can we patients do to help persuade funders to do the<br>research needed to find better treatments than the decades old one's<br>currently in use.<br><br>Thanks!<br><br>Terri
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1 Reaction@tdrell and @boomerexpert - I'd like to see new drug(s) for NTM that can be inhaled right into the lungs!
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1 ReactionRe the conference.
Perhaps we need some statistical data gathered to try to help understand why some people get MAC and most don't. There must be more commonalities to all of this that is being missed. If we knew the cause, perhaps a better cure would become more apparent. Perhaps reoccurance could be stopped.
We are getting the same drugs they've been using to treat NTMs for years with no advances. There is no critical mass to our numbers, and so no money in trying to figure this out.
I think a better look at the possibity of "hidden" MAC, all the folks walking around with a cough, tired, not yet diagnosed. Also, they talk 8% growth rate. As our population ages with the boomers, is this growth rate perhaps much higher?
What about surgery. It's seems to be a pretty sure cure. Why isn't more done? Maybe too expensive or only allowed if drugs fail? There are some people on here MAC free for a few years, but let's face it, with drugs only it frequently comes back. Surgery seems to be an endgame for the disease. I'd like to get rid of this for my future years, not live on drugs that have many side effects long and short term.
It seems someone must be asking these questions and gathering info for the conference, but perhaps not. I cannot go due to a previous trip plan.
I'm sure someone going to the conference with MAC can better formulate these ideas.
Thanks. Comments and additions welcome.
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