(MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS

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:

  1. Document Title Example:  Mayo Clinic Connect MAI/MAC Information
  2. 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
  3. 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!

KateMN

I was just diagnosed with Mac after spending a week in the hospital with flu b and had a bad cough went to see pulmonologist and put me on inhalers and neubulizer breathing treatments at home.Sent out sputum to check for TB and told me I have Mac! Scared not coughing anymore??? Wants to start antibiotics on Monday??

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Hey turbo, so glad you found our group. I know its a scary thing to have but if you read the past posts you will learn so much. Knowledge is power! Come back with any guestions you may have. Everyone here is so kind and compassionate, you will see. Im not a night owl but some of us are so come back any time. Take care!
Becky

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@turbo

I was just diagnosed with Mac after spending a week in the hospital with flu b and had a bad cough went to see pulmonologist and put me on inhalers and neubulizer breathing treatments at home.Sent out sputum to check for TB and told me I have Mac! Scared not coughing anymore??? Wants to start antibiotics on Monday??

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Welcome to the MAC forum, @turbo. I’m so glad you found us. This can be a scary time. I’m encourage you to read through the past messages of this discussion thread. You will see that many of the members have been treated with antibiotics. Allow me to introduce you to a few members to get you started. Please meet @heathert @Paula_MAC2007 @21042 @lindam272 @beatitnow and @kaystrand. They will accompany you as you start treatment on Monday.

As you read through the past posts, you may have questions for particular members. Simply add their @username in your message and they will be notified by email that you’ve referred to them specifically.

Turbo, were you coughing a lot before and now the coughing has stopped? This worries you?

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@turbo

I was just diagnosed with Mac after spending a week in the hospital with flu b and had a bad cough went to see pulmonologist and put me on inhalers and neubulizer breathing treatments at home.Sent out sputum to check for TB and told me I have Mac! Scared not coughing anymore??? Wants to start antibiotics on Monday??

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Turbo….have they done a CAT scan of lungs??? Have they had 2 of 3 sputum specimens that grew the MAC??? I have more questions re why the rush to treat the MAC…my local doctors were in a rush to start me on the antibiotics….but I went to National Jewish Health in Denver….they said NOT to take the meds. Terrid

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@turbo

I was just diagnosed with Mac after spending a week in the hospital with flu b and had a bad cough went to see pulmonologist and put me on inhalers and neubulizer breathing treatments at home.Sent out sputum to check for TB and told me I have Mac! Scared not coughing anymore??? Wants to start antibiotics on Monday??

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They did a cat scan in the hospital then I was referred to a pulmonologist after I got released took a sputum they sent it out for TB but came back negative then 2 weeks later I got the news I have Mac!! Trust my doctor just surprised I work in a hospital as Med surg Tech so I know so medical stuff!! Thanks for responding to me look forward to receiving information about this!!❤️

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@chinasmom

Hey turbo, so glad you found our group. I know its a scary thing to have but if you read the past posts you will learn so much. Knowledge is power! Come back with any guestions you may have. Everyone here is so kind and compassionate, you will see. Im not a night owl but some of us are so come back any time. Take care!
Becky

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Thanks for having me have medical knowledge as I wk in a hospital as Med surgical Tech for 18 years!! Had MI in2011 have ICD but I wk full time very active just got sick flu b respiratory problems and bam find out I got MAC!! I’m 57 and not ready to sit down!! Glad I looked this up so I can learn about it!! ❤️

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@turbo

I was just diagnosed with Mac after spending a week in the hospital with flu b and had a bad cough went to see pulmonologist and put me on inhalers and neubulizer breathing treatments at home.Sent out sputum to check for TB and told me I have Mac! Scared not coughing anymore??? Wants to start antibiotics on Monday??

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@turbo First: welcome…you have a MACfamily here! (get it…like Mcnuggets?…bad, eh?). Second, do not start antibiotics until a bronch is done and the specific antibiotic to which your MAC is sensitive is determined…this takes time, but since you’re not coughing you’re not spreading it so you have some time. Third, don’t berate yourself for not knowing about MAC as a medical professional….lots of docs know little to nothing about it which is why it’s spreading so prolifically.

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@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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@justdontbreathewell where the heck do you live?

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I have been treated for MAC twice in the last 10 years . I also have bronchietis as well as fungus which I am being treated fo now with noxafil as well as copd. Need some guidance as well as help in locating treatment and doctors to address all lung issues.

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A family member was recently diagnosed. I’ve done some reading but not clear on the bronchiectasis. Is that a result of chronic MAC or a contributing factor?

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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?”

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@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?”

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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.

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@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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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
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
in FL, and that is where I am from originally.
 

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@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

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@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.

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@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

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

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