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.

ijustdontbreathewell | @ijustdontbreathewell | Mar 27, 2017
In reply to @colleenyoung "Hi new members, @nanny2aak and @retyured. Welcome to the MAC & Bronchiectasis group. You'll notice that..." + (show)
@colleenyoung

Hi new members, @nanny2aak and @retyured. Welcome to the MAC & Bronchiectasis group.
You'll notice that I moved your messages to the main discussion thread, so that you can meet many members and benefit from their collective experience and wisdom.

Nanny2aak - would you mind telling us what state or country you live in. This will help members provide guidance on finding doctors and treatment centers.

Retyured - some members have bronchiectasis and MAC, others have one or the other. Can someone help explain "Is bronchiectasis a result of chronic MAC or a contributing factor?"

Jump to this post

bronchiectasis is a widening of the bronchial passages, it is irreversible and usually also involves some rigidity, it can occur for many reasons, but is not always present with MAC. I would not say that they are directly correlated but sometimes both are present in the same patient.

REPLY
ijustdontbreathewell | @ijustdontbreathewell | Mar 27, 2017
In reply to @katemn "thank-you for being here Posted by @ijustdontbreathewell in MAC & Bronchiectasis, 25 minutes ago I was..." + (show)
@katemn

thank-you for being here
Posted by @ijustdontbreathewell in MAC & Bronchiectasis, 25 minutes ago
I was just told very rudely and with absolutely no compassion at an urgent care that I have pnuemonia and MAC at an Urgent care. I watched my mother and my aunt die of MAC and of auto-immune disease. I don't know why I did not notice that I had it, until it was slapped in my face. I know what to expect, I am hoping things have changed. And I thank each of you for just being here.

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@ijustdontbreathewell .. do you have a first name? .. more personal. I hope you don't mind but I am going to answer you on the Main MAC Forum .. I am hoping you will receive more answers from our wonderfully supportive members.

@ijustdontbreathewell, I am SO sorry this has happened to you .. that you were treated in this manner by Urgent Care. Just DOESN'T have to be that way. If you CHOOSE a "helping" career .. then HELP .. have compassion and caring .. or in my opinion get out! When/if you become that callous .. you are no longer are suited to be in a "helping" career. That is just my opinion. I don't feel you should have found out your diagnosis in this manner. It is especially tough for you having watched family members go through this. BUT you now have found a community of lovely people who have walked this same MAC journey. We will walk it with you. If you read the past pages of the Forum you may find out things that you didn’t even know despite watching your family member's path. After reading .. feel free to ask any questions .. we will do our best to answer and help you along the way. We are glad you found us! Hugs to you in this tough time! Katherine

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<br><br><br><br><br><br><br><br>I live in NC, and I work for a very large “teaching” hospital, nationally recognized supposedly, I am beginning to wonder for what? My colleagues are advising<br> that I get to another hospital. I am going to look into FL, someone on here said there was a Mayo in FL. Well, at least I know that we have a thorough and great Forensic department. If anyone is familiar with the Mayo FL please advise, I have a good friend<br> in FL, and that is where I am from originally.<br> <br><br><br>

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Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 27, 2017
In reply to @katemn "thank-you for being here Posted by @ijustdontbreathewell in MAC & Bronchiectasis, 25 minutes ago I was..." + (show)
@katemn

thank-you for being here
Posted by @ijustdontbreathewell in MAC & Bronchiectasis, 25 minutes ago
I was just told very rudely and with absolutely no compassion at an urgent care that I have pnuemonia and MAC at an Urgent care. I watched my mother and my aunt die of MAC and of auto-immune disease. I don't know why I did not notice that I had it, until it was slapped in my face. I know what to expect, I am hoping things have changed. And I thank each of you for just being here.

+++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++

@ijustdontbreathewell .. do you have a first name? .. more personal. I hope you don't mind but I am going to answer you on the Main MAC Forum .. I am hoping you will receive more answers from our wonderfully supportive members.

@ijustdontbreathewell, I am SO sorry this has happened to you .. that you were treated in this manner by Urgent Care. Just DOESN'T have to be that way. If you CHOOSE a "helping" career .. then HELP .. have compassion and caring .. or in my opinion get out! When/if you become that callous .. you are no longer are suited to be in a "helping" career. That is just my opinion. I don't feel you should have found out your diagnosis in this manner. It is especially tough for you having watched family members go through this. BUT you now have found a community of lovely people who have walked this same MAC journey. We will walk it with you. If you read the past pages of the Forum you may find out things that you didn’t even know despite watching your family member's path. After reading .. feel free to ask any questions .. we will do our best to answer and help you along the way. We are glad you found us! Hugs to you in this tough time! Katherine

Jump to this post

@ijustdontbreathewell, indeed there is a Mayo Clinic in Jacksonville, Florida. Here's the contact info. http://mayocl.in/1mtmR63
Other members from FL include @maryjo2sell @dianeray @boomerexpert and @nikolaiw. Also @Paula_MAC2007 pulmonologist moved practice to Florida.

REPLY
boomerexpert | @boomerexpert | Mar 27, 2017
In reply to @katemn "thank-you for being here Posted by @ijustdontbreathewell in MAC & Bronchiectasis, 25 minutes ago I was..." + (show)
@katemn

thank-you for being here
Posted by @ijustdontbreathewell in MAC & Bronchiectasis, 25 minutes ago
I was just told very rudely and with absolutely no compassion at an urgent care that I have pnuemonia and MAC at an Urgent care. I watched my mother and my aunt die of MAC and of auto-immune disease. I don't know why I did not notice that I had it, until it was slapped in my face. I know what to expect, I am hoping things have changed. And I thank each of you for just being here.

+++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++

@ijustdontbreathewell .. do you have a first name? .. more personal. I hope you don't mind but I am going to answer you on the Main MAC Forum .. I am hoping you will receive more answers from our wonderfully supportive members.

@ijustdontbreathewell, I am SO sorry this has happened to you .. that you were treated in this manner by Urgent Care. Just DOESN'T have to be that way. If you CHOOSE a "helping" career .. then HELP .. have compassion and caring .. or in my opinion get out! When/if you become that callous .. you are no longer are suited to be in a "helping" career. That is just my opinion. I don't feel you should have found out your diagnosis in this manner. It is especially tough for you having watched family members go through this. BUT you now have found a community of lovely people who have walked this same MAC journey. We will walk it with you. If you read the past pages of the Forum you may find out things that you didn’t even know despite watching your family member's path. After reading .. feel free to ask any questions .. we will do our best to answer and help you along the way. We are glad you found us! Hugs to you in this tough time! Katherine

Jump to this post

Mayo in Fl very good...so is Chapel Hill in NC...Raleigh/Durham no expertise w/MAC

REPLY
ijustdontbreathewell | @ijustdontbreathewell | Mar 27, 2017
In reply to @katemn "thank-you for being here Posted by @ijustdontbreathewell in MAC & Bronchiectasis, 25 minutes ago I was..." + (show)
@katemn

thank-you for being here
Posted by @ijustdontbreathewell in MAC & Bronchiectasis, 25 minutes ago
I was just told very rudely and with absolutely no compassion at an urgent care that I have pnuemonia and MAC at an Urgent care. I watched my mother and my aunt die of MAC and of auto-immune disease. I don't know why I did not notice that I had it, until it was slapped in my face. I know what to expect, I am hoping things have changed. And I thank each of you for just being here.

+++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++

@ijustdontbreathewell .. do you have a first name? .. more personal. I hope you don't mind but I am going to answer you on the Main MAC Forum .. I am hoping you will receive more answers from our wonderfully supportive members.

@ijustdontbreathewell, I am SO sorry this has happened to you .. that you were treated in this manner by Urgent Care. Just DOESN'T have to be that way. If you CHOOSE a "helping" career .. then HELP .. have compassion and caring .. or in my opinion get out! When/if you become that callous .. you are no longer are suited to be in a "helping" career. That is just my opinion. I don't feel you should have found out your diagnosis in this manner. It is especially tough for you having watched family members go through this. BUT you now have found a community of lovely people who have walked this same MAC journey. We will walk it with you. If you read the past pages of the Forum you may find out things that you didn’t even know despite watching your family member's path. After reading .. feel free to ask any questions .. we will do our best to answer and help you along the way. We are glad you found us! Hugs to you in this tough time! Katherine

Jump to this post

<br><br><br><br><br><br><br><br>Thanks , I have not had time or actually the strength to google it, Jacksonville?, uh Floridians don’t consider that Fl, we consider that Yankee territory,<br> I was hoping for Miami, J I have people to stay with and to help with my care and welcome my dog,<br> in south FL.  So, if anyone knows of a good MAC person in S FL please advise.<br> <br><br><br>

REPLY
boomerexpert | @boomerexpert | Mar 27, 2017
In reply to @katemn "thank-you for being here Posted by @ijustdontbreathewell in MAC & Bronchiectasis, 25 minutes ago I was..." + (show)
@katemn

thank-you for being here
Posted by @ijustdontbreathewell in MAC & Bronchiectasis, 25 minutes ago
I was just told very rudely and with absolutely no compassion at an urgent care that I have pnuemonia and MAC at an Urgent care. I watched my mother and my aunt die of MAC and of auto-immune disease. I don't know why I did not notice that I had it, until it was slapped in my face. I know what to expect, I am hoping things have changed. And I thank each of you for just being here.

+++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++

@ijustdontbreathewell .. do you have a first name? .. more personal. I hope you don't mind but I am going to answer you on the Main MAC Forum .. I am hoping you will receive more answers from our wonderfully supportive members.

@ijustdontbreathewell, I am SO sorry this has happened to you .. that you were treated in this manner by Urgent Care. Just DOESN'T have to be that way. If you CHOOSE a "helping" career .. then HELP .. have compassion and caring .. or in my opinion get out! When/if you become that callous .. you are no longer are suited to be in a "helping" career. That is just my opinion. I don't feel you should have found out your diagnosis in this manner. It is especially tough for you having watched family members go through this. BUT you now have found a community of lovely people who have walked this same MAC journey. We will walk it with you. If you read the past pages of the Forum you may find out things that you didn’t even know despite watching your family member's path. After reading .. feel free to ask any questions .. we will do our best to answer and help you along the way. We are glad you found us! Hugs to you in this tough time! Katherine

Jump to this post

Try the Cleveland Clinic - has a So FL site. Also try https://www.ntminfo.org/patients/physician-referral-list - I found my doc there...he knows his stuff

REPLY
ijustdontbreathewell | @ijustdontbreathewell | Mar 27, 2017
In reply to @katemn "thank-you for being here Posted by @ijustdontbreathewell in MAC & Bronchiectasis, 25 minutes ago I was..." + (show)
@katemn

thank-you for being here
Posted by @ijustdontbreathewell in MAC & Bronchiectasis, 25 minutes ago
I was just told very rudely and with absolutely no compassion at an urgent care that I have pnuemonia and MAC at an Urgent care. I watched my mother and my aunt die of MAC and of auto-immune disease. I don't know why I did not notice that I had it, until it was slapped in my face. I know what to expect, I am hoping things have changed. And I thank each of you for just being here.

+++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++

@ijustdontbreathewell .. do you have a first name? .. more personal. I hope you don't mind but I am going to answer you on the Main MAC Forum .. I am hoping you will receive more answers from our wonderfully supportive members.

@ijustdontbreathewell, I am SO sorry this has happened to you .. that you were treated in this manner by Urgent Care. Just DOESN'T have to be that way. If you CHOOSE a "helping" career .. then HELP .. have compassion and caring .. or in my opinion get out! When/if you become that callous .. you are no longer are suited to be in a "helping" career. That is just my opinion. I don't feel you should have found out your diagnosis in this manner. It is especially tough for you having watched family members go through this. BUT you now have found a community of lovely people who have walked this same MAC journey. We will walk it with you. If you read the past pages of the Forum you may find out things that you didn’t even know despite watching your family member's path. After reading .. feel free to ask any questions .. we will do our best to answer and help you along the way. We are glad you found us! Hugs to you in this tough time! Katherine

Jump to this post

<br><br><br><br><br><br><br><br>Thanks so much for the link, I will try Chapel Hill first, someone said that Duke is not so great, I will ask the guys that I know in pulmonary down the hall<br> if they know any of these at CH.  But it is good to know about S FL as well, I really don’t know how much longer I will be able to be self- sufficient and will need to be home.  On my way to harass medical records for copies of absolutely everything they have<br> ever even thought about having …..<br> <br><br><br>

REPLY
cbest | @cbest | Mar 27, 2017

Just got told I probably have MAC. I have been a respiratory therapist for 45 years and this is the first I have encountered this disease. So yes I am scared to death while I wait to see an Infectious disease dr. Would never have known I had anything until an episode of coughing up blood as I was working just before Thansksgiving. But it may have been a life saver since they did a CT. I have been treated from asthma and bronchitis almost cont. for a year or more now. My airways were so irritated and I just never seemed to get better or over the cough. No one looked for anything else. Any information and support will be appreciated.

REPLY
12 replies
tdrell | @tdrell | Mar 27, 2017
In reply to @colleenyoung "Hi new members, @nanny2aak and @retyured. Welcome to the MAC & Bronchiectasis group. You'll notice that..." + (show)
@colleenyoung

Hi new members, @nanny2aak and @retyured. Welcome to the MAC & Bronchiectasis group.
You'll notice that I moved your messages to the main discussion thread, so that you can meet many members and benefit from their collective experience and wisdom.

Nanny2aak - would you mind telling us what state or country you live in. This will help members provide guidance on finding doctors and treatment centers.

Retyured - some members have bronchiectasis and MAC, others have one or the other. Can someone help explain "Is bronchiectasis a result of chronic MAC or a contributing factor?"

Jump to this post

retyured......I think our leader Katherine is the past has said that her specialist at Mayo's has said re which comes first....Mac or bronchiectasis.....it is like which comes first..the chicken or the egg??terrid

REPLY
boomerexpert | @boomerexpert | Mar 27, 2017
In reply to @katemn "thank-you for being here Posted by @ijustdontbreathewell in MAC & Bronchiectasis, 25 minutes ago I was..." + (show)
@katemn

thank-you for being here
Posted by @ijustdontbreathewell in MAC & Bronchiectasis, 25 minutes ago
I was just told very rudely and with absolutely no compassion at an urgent care that I have pnuemonia and MAC at an Urgent care. I watched my mother and my aunt die of MAC and of auto-immune disease. I don't know why I did not notice that I had it, until it was slapped in my face. I know what to expect, I am hoping things have changed. And I thank each of you for just being here.

+++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++

@ijustdontbreathewell .. do you have a first name? .. more personal. I hope you don't mind but I am going to answer you on the Main MAC Forum .. I am hoping you will receive more answers from our wonderfully supportive members.

@ijustdontbreathewell, I am SO sorry this has happened to you .. that you were treated in this manner by Urgent Care. Just DOESN'T have to be that way. If you CHOOSE a "helping" career .. then HELP .. have compassion and caring .. or in my opinion get out! When/if you become that callous .. you are no longer are suited to be in a "helping" career. That is just my opinion. I don't feel you should have found out your diagnosis in this manner. It is especially tough for you having watched family members go through this. BUT you now have found a community of lovely people who have walked this same MAC journey. We will walk it with you. If you read the past pages of the Forum you may find out things that you didn’t even know despite watching your family member's path. After reading .. feel free to ask any questions .. we will do our best to answer and help you along the way. We are glad you found us! Hugs to you in this tough time! Katherine

Jump to this post

If you're losing steam fast, recommend you go where you have support...sounds like that's So FL. Found this doc w/Cleveland Clinic: http://my.clevelandclinic.org/staff/19076-ignacio-echenique

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