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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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@lindam272 by "susceptible host" do you mean immunocompromised? If so that's no longer the case...folks with healthy immune systems are now being infected...
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1 ReactionRight! The immunocompetent have become “susceptible” hosts. I have read about different reasons for being susceptible whether it be body type, chest structure or whatever. I don’t think there is a definitive reason yet. What I have read is that nine times out of ten there is a comorbidity with MAC.
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2 ReactionsFor me @tdrell it's the biggee...why is NJ doing no research - or pushing for it - on effective treatments, and when will they change that tune...
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1 Reaction@irene5, I would have to agree with your statement Irene. How are you doing now? You are number one on my mind.
@boomerexpert, It could be that the mac is morphing into a stronger bug.
Thanks. You are kind! My mom always said, “if you don’t have anything good to say, don’t say anything at all.” So I try not to burden people. My doctor and I had a discussion about that just the other day. It is hard for me to go from caregiver to being taken care of- I hate it! The big three is not a walk in the park, but I am determined to persevere. I was recently registered for medical marijuana. I haven’t used any yet - so not a party animal! 🙂 I also don’t like my children worrying so much, because that’s my job - to worry about them. The good news is I try to stay positive and set a goal to do one thing everyday, even if it’s only a small thing. And when you have ten kids, thirteen grand babies, three German shepherds, a black and a yellow lab not to mention a caring albeit not so well husband - well, lonely I will never be! Thanks for asking! I have faith that someday we will all be cured! 🙂
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2 ReactionsDon't know the reason b/c too little research being done...there's much "they don't know" and many docs complicit in keeping it that way via apathy
@jkiemen have contact info for either/both Jo Ann?
Agreed! And what is up with that? I wouldn’t wish this on my worst enemy, but if one of them had this they might be a little less apathetic. My doctors have all been very concerned though. I think they are stuck between a rock and a hard place with funding not to mention lack of documentation with the CDC.
The only way we will get this pushed is to find a famous person that has this I guess. Or find a famous person to be an advocate. Maybe a parent or sibling had it. Or one of us needs to win the lottery or do something to become famous.
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