1. < MAC & Bronchiectasis

(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

Posted by Katherine, Alumni Mentor @katemn, Nov 21, 2011

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!

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 21, 2017
In reply to @unicorn "Who coughs up blood, hemoptysis...I need to know how to handle this. I went to er..." + (show)
@unicorn

Who coughs up blood, hemoptysis...I need to know how to handle this. I went to er twice, but don't bother now, seems to stop on its own, but need to hear others stories. Just to scary, afraid to travel. Did big 3, but can no longer tolerate pills, wiped out my bowels, rashes, hair thinning, eyesight reduced tinnitus, extreme weight loss, too tired to get up, although I did,( have big dog) Every symptom. Honestly, I was trying to die, even considered trying to get pneumonia!! It is just no way to live. So now, no pills, nebulizer and exercise, but I cough up blood and it is terrtifying. It is rare though...

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@kaystrand Funny, I was always more germ conscious than most, even when I was little. Now, I am borderline germaphobe! I don't even want to kiss my own husband on the mouth. That is mainly because he always has some kind of non-serious lung thing going on, but it may likely make me sick.

REPLY
irene5 Irene Estes | @irene5 | Aug 21, 2017
In reply to @unicorn "Who coughs up blood, hemoptysis...I need to know how to handle this. I went to er..." + (show)
@unicorn

Who coughs up blood, hemoptysis...I need to know how to handle this. I went to er twice, but don't bother now, seems to stop on its own, but need to hear others stories. Just to scary, afraid to travel. Did big 3, but can no longer tolerate pills, wiped out my bowels, rashes, hair thinning, eyesight reduced tinnitus, extreme weight loss, too tired to get up, although I did,( have big dog) Every symptom. Honestly, I was trying to die, even considered trying to get pneumonia!! It is just no way to live. So now, no pills, nebulizer and exercise, but I cough up blood and it is terrtifying. It is rare though...

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Unfortunately, if we are on proton pump inhibitors for GERD, stomach acid won't be killing anything because these meds reduce stomach acid. I think that's why so many of us have the question, " Which came first, GERD or MAC?"

REPLY
Kay Strand | @kaystrand | Aug 21, 2017
In reply to @unicorn "Who coughs up blood, hemoptysis...I need to know how to handle this. I went to er..." + (show)
@unicorn

Who coughs up blood, hemoptysis...I need to know how to handle this. I went to er twice, but don't bother now, seems to stop on its own, but need to hear others stories. Just to scary, afraid to travel. Did big 3, but can no longer tolerate pills, wiped out my bowels, rashes, hair thinning, eyesight reduced tinnitus, extreme weight loss, too tired to get up, although I did,( have big dog) Every symptom. Honestly, I was trying to die, even considered trying to get pneumonia!! It is just no way to live. So now, no pills, nebulizer and exercise, but I cough up blood and it is terrtifying. It is rare though...

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But Terri, we are not inhaling or drinking the pedicure water as it has no vapor right? How would it get to your lung? Not through our feet!

I guess the stomach acid question is one for a microbiologist. I might try to contact one with some of these questions. There are some at NJ.

KayS

REPLY
ginak | @ginak | Aug 21, 2017
In reply to @unicorn "Who coughs up blood, hemoptysis...I need to know how to handle this. I went to er..." + (show)
@unicorn

Who coughs up blood, hemoptysis...I need to know how to handle this. I went to er twice, but don't bother now, seems to stop on its own, but need to hear others stories. Just to scary, afraid to travel. Did big 3, but can no longer tolerate pills, wiped out my bowels, rashes, hair thinning, eyesight reduced tinnitus, extreme weight loss, too tired to get up, although I did,( have big dog) Every symptom. Honestly, I was trying to die, even considered trying to get pneumonia!! It is just no way to live. So now, no pills, nebulizer and exercise, but I cough up blood and it is terrtifying. It is rare though...

Jump to this post

Kay, I was just thinking the same thing about the pedicure water. But I wouldn't think it was close enough to our face to worry about inhaling the vapor! I keep saying this disease is like a science fiction movie and the more I learn about it the more I think THAT! It's just too crazy! We could drive ourselves insane worrying about all of this! Terri I, also, was a bit of a germaphobe and now my sister makes fun of me and says "see where it got you"! Oh well, we can just do the best we can!

REPLY
Lisa Y | @tutti | Aug 21, 2017
In reply to @unicorn "Who coughs up blood, hemoptysis...I need to know how to handle this. I went to er..." + (show)
@unicorn

Who coughs up blood, hemoptysis...I need to know how to handle this. I went to er twice, but don't bother now, seems to stop on its own, but need to hear others stories. Just to scary, afraid to travel. Did big 3, but can no longer tolerate pills, wiped out my bowels, rashes, hair thinning, eyesight reduced tinnitus, extreme weight loss, too tired to get up, although I did,( have big dog) Every symptom. Honestly, I was trying to die, even considered trying to get pneumonia!! It is just no way to live. So now, no pills, nebulizer and exercise, but I cough up blood and it is terrtifying. It is rare though...

Jump to this post

Terri, thank you so much for your advice and encouragement. It was a big help, I needed that. It seems as I go through this treatment process I'll be doing good staying positive and something happens and I get so upset. It takes me a while to get my positive attitude back. There is no one to talk to, to compare notes. There is next to nobody that's even heard of it.
You were right the 8 wks of 2 iv drugs was hell. And today the next bout started, the inhaled amikacin and the new oral antibiotic went great! So far so good. Hope it stays that way! Those bumps in the road are tuff. Thanks again you wrre a great help. God bless you! Big hug....Lisa

REPLY
heathert | @heathert | Aug 21, 2017
In reply to @unicorn "Who coughs up blood, hemoptysis...I need to know how to handle this. I went to er..." + (show)
@unicorn

Who coughs up blood, hemoptysis...I need to know how to handle this. I went to er twice, but don't bother now, seems to stop on its own, but need to hear others stories. Just to scary, afraid to travel. Did big 3, but can no longer tolerate pills, wiped out my bowels, rashes, hair thinning, eyesight reduced tinnitus, extreme weight loss, too tired to get up, although I did,( have big dog) Every symptom. Honestly, I was trying to die, even considered trying to get pneumonia!! It is just no way to live. So now, no pills, nebulizer and exercise, but I cough up blood and it is terrtifying. It is rare though...

Jump to this post

@tutti,Lisa I hear you too, getting our heads around all this is so difficult, you are not alone. We must all fight that nasty anxiety monster which is doing us harm. I hope the antibiotics and Amakacin go well for you, I found the inhaled amakacin worked well. Heather

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 21, 2017
In reply to @unicorn "Who coughs up blood, hemoptysis...I need to know how to handle this. I went to er..." + (show)
@unicorn

Who coughs up blood, hemoptysis...I need to know how to handle this. I went to er twice, but don't bother now, seems to stop on its own, but need to hear others stories. Just to scary, afraid to travel. Did big 3, but can no longer tolerate pills, wiped out my bowels, rashes, hair thinning, eyesight reduced tinnitus, extreme weight loss, too tired to get up, although I did,( have big dog) Every symptom. Honestly, I was trying to die, even considered trying to get pneumonia!! It is just no way to live. So now, no pills, nebulizer and exercise, but I cough up blood and it is terrtifying. It is rare though...

Jump to this post

@kaystrand Kay, I believe it said through a cut or something like that. It could enter your system that way. Personally, because I am somewhat of a germ phobe anymore, I just avoid known sources altogether.

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 21, 2017
In reply to @unicorn "Who coughs up blood, hemoptysis...I need to know how to handle this. I went to er..." + (show)
@unicorn

Who coughs up blood, hemoptysis...I need to know how to handle this. I went to er twice, but don't bother now, seems to stop on its own, but need to hear others stories. Just to scary, afraid to travel. Did big 3, but can no longer tolerate pills, wiped out my bowels, rashes, hair thinning, eyesight reduced tinnitus, extreme weight loss, too tired to get up, although I did,( have big dog) Every symptom. Honestly, I was trying to die, even considered trying to get pneumonia!! It is just no way to live. So now, no pills, nebulizer and exercise, but I cough up blood and it is terrtifying. It is rare though...

Jump to this post

@kaystrand Kay, please let us know what you learn about the stomach acid.

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 21, 2017
In reply to @unicorn "Who coughs up blood, hemoptysis...I need to know how to handle this. I went to er..." + (show)
@unicorn

Who coughs up blood, hemoptysis...I need to know how to handle this. I went to er twice, but don't bother now, seems to stop on its own, but need to hear others stories. Just to scary, afraid to travel. Did big 3, but can no longer tolerate pills, wiped out my bowels, rashes, hair thinning, eyesight reduced tinnitus, extreme weight loss, too tired to get up, although I did,( have big dog) Every symptom. Honestly, I was trying to die, even considered trying to get pneumonia!! It is just no way to live. So now, no pills, nebulizer and exercise, but I cough up blood and it is terrtifying. It is rare though...

Jump to this post

@ginak Gina, just remember, she is not sporting this crud in her lungs. She might feel differently if it was her.

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