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.

Katherine, Alumni Mentor | @katemn | Aug 27, 2016
In reply to @katemn "Dear All, FYI .. I will be out of town with limited internet access from 8/31..." + (show)
@katemn

Dear All, FYI .. I will be out of town with limited internet access from 8/31 to 9/18.

PLEASE watch for new people .. help and support them as I know you will! But especially during my absence! We have always been a caring community so I worry that someone will feel afraid and alone during my absence. Just watch out for each other. You will all be in my thoughts .. sending you all an advance hug! Katherine

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Winnie, you are well on your way toward working through this with that great attitude of yours! You are so right in understanding the destructive nature of stress in relationship to our poor bodies plus our psyches. We must always remember our body is our friend .. it is in there doing it's level best to keep us healthy .. and we must do our level best to work with it .. by doing your healthy daily walks .. daily "healthy self talks" .. healthy eating. We have to help our bodies help us!

Do some thinking about "what fills your cup" .. remembering that you "can't pour from an empty cup". For each person filling their cup is different .. for some it is sitting down with a cup of tea and reading a good book .. another it is volunteering .. another it is a walk in a beautiful area .. another it is chatting with someone positive .. each person is different. Think through what it is for you .. THEN go about filling your cup! You deserve it! Plus it prepares you for whatever lies ahead .. AND teaches you self care! As you said .. be kind to yourself! I will be thinking of you while I am away. A big hug to you! Katherine

REPLY
heathert | @heathert | Aug 27, 2016
In reply to @katemn "Dear All, FYI .. I will be out of town with limited internet access from 8/31..." + (show)
@katemn

Dear All, FYI .. I will be out of town with limited internet access from 8/31 to 9/18.

PLEASE watch for new people .. help and support them as I know you will! But especially during my absence! We have always been a caring community so I worry that someone will feel afraid and alone during my absence. Just watch out for each other. You will all be in my thoughts .. sending you all an advance hug! Katherine

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such wonderful advice@ Katherine! sometimes we all need reminding of this so thanks for bringing me back to where I should be.

REPLY
Katherine, Alumni Mentor | @katemn | Aug 27, 2016
In reply to @katemn "Dear All, FYI .. I will be out of town with limited internet access from 8/31..." + (show)
@katemn

Dear All, FYI .. I will be out of town with limited internet access from 8/31 to 9/18.

PLEASE watch for new people .. help and support them as I know you will! But especially during my absence! We have always been a caring community so I worry that someone will feel afraid and alone during my absence. Just watch out for each other. You will all be in my thoughts .. sending you all an advance hug! Katherine

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heathert, just in posting to each other I think it always reminds each of us where each of us truly want to be on our individual journeys .. I think that is the beauty of our Forum! I guess I have confident that we all will find our individual ways .. like lovely little snow flakes .. each one different .. each journey different .. each one special! Hey! I feel like I know you .. do you have a first name? I feel funny posting to an @! But don't worry .. if you don't feel comfortable using it .. not to worry .. our Forum is all about being where you are. Do what is best for you. Sending you a Hug! Katherine

REPLY
Melody Coyle | @coylemel333 | Aug 27, 2016
In reply to @debbiec "Local South Florida pulmonologist has confirmed MAC. Treatment to be discussed at next doctor's visit. Internet..." + (show)
@debbiec

Local South Florida pulmonologist has confirmed MAC. Treatment to be discussed at next doctor's visit. Internet research has me worried about possible side effects affecting my ablity to get through work week & be care giver to sick husband. Am wondering if I should seek top notch specialist in local medical/university centers. A penny for your thoughts... Have Rheumatoid Arthritis & have been taken off 9 yr. treatment of Humira which is suspected of having compromised my already weak immune system. Any R.A./MAC patients out there?

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We're do you live in Florida I live in Naples Florida

REPLY
cowboy1997 | @cowboy1997 | Aug 27, 2016
In reply to @katemn "@katiemknor Hi Katherine, I love how you're such an advocate for us! Your passion and positive..." + (show)
@katemn

@katiemknor Hi Katherine, I love how you're such an advocate for us! Your passion and positive attitude is so appreciated. I understand your suggestion of getting a second opinion. I failed to give you an accurate picture of my medical journey.

Originally I started with a pulmonologist referred to me by my ENT that did nothing but scare me (not needed here, I'm already scared). Fortunately for me my brother in law taught at Tulane 's medical school and referred me to his former colleague Dr Covitz a Pulmonologist who now teaches and works in Chicago (post Katrina). I'm comfortable with my doctor, but now realize I need a good infectious disease doctor...it sounds so scary. If it turns out to be MAC I agree that I need a doctor that specializes with MAC patients.

The waiting for test results and having time on my hands is the worse part for me. I'm 50 years old and I've always been super active. I've been taking several long walks during the day and look for inspiration...in people like you! Thanks! Winnie
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@katiemknor
Thank you for sending me the above private message Winnie. However, I hope you don’t mind that I have placed it on our Forum because I think you have things to add to our storehouse of knowledge as you go along on your journey .. plus I see that Kathryn from our Forum has ALREADY reached out to you to support you! That is the wonderful way our Forum works! Private messages truthfully kind of defeat the wonderful purpose of our sharing Forum .. hope you are ok with that! I think in time you will be really happy with the kindness and sharing you will find from others here on our Forum .. PLUS I am quite sure you will “play it forward” as you are a little further along on YOUR journey! That is just how this Forum has worked .. wonderfully!

Now to details .. I am SO glad you have at least started with a pulmonologist .. BUT in NO way should they have scared you!! Phooey!! I am SOOO glad Kathryn responded to you .. SHE is a teacher .. REALLY in your same boat .. AND still teaching!! You two should really try to stay in touch.

I really think if you “put your energy into what you can control” which is researching a good MAC doctor to get a second opinion .. that will help fill the time .. take you mind off the wait .. plus be sure to read the back pages of this Forum. That is doing your “Due Diligence” in case it is MAC .. so you will be educated about the process. Knowledge truly IS power .. take that power BACK .. into your OWN hands .. educate yourself so that you know what is happening to your body. It truly does help!

Winnie, I would encourage you to post here on the Forum .. once you do .. you will start to receive any new messages from other people .. you will then be kept in the "loop" .. how 'bout that! Neat system huh?

Then keep coming back to the Forum .. really good people here who will be here for you whatever the outcome of the journey. Sending you a Hug! Katherine

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What does MAC stand for? I had a cough for 18 yrs before I was diagnosed with silent Reflux. Had surgery cough went away. Now 5 yrs later I had Cervical Spine surgery and I have cough back! Surgeon told me he would move my Esophagus to one side for the surgery. Now I'm wondering if he messed up my Reflux surgery?<br><br>

REPLY
Katherine, Alumni Mentor | @katemn | Aug 27, 2016
In reply to @katemn "@katiemknor Hi Katherine, I love how you're such an advocate for us! Your passion and positive..." + (show)
@katemn

@katiemknor Hi Katherine, I love how you're such an advocate for us! Your passion and positive attitude is so appreciated. I understand your suggestion of getting a second opinion. I failed to give you an accurate picture of my medical journey.

Originally I started with a pulmonologist referred to me by my ENT that did nothing but scare me (not needed here, I'm already scared). Fortunately for me my brother in law taught at Tulane 's medical school and referred me to his former colleague Dr Covitz a Pulmonologist who now teaches and works in Chicago (post Katrina). I'm comfortable with my doctor, but now realize I need a good infectious disease doctor...it sounds so scary. If it turns out to be MAC I agree that I need a doctor that specializes with MAC patients.

The waiting for test results and having time on my hands is the worse part for me. I'm 50 years old and I've always been super active. I've been taking several long walks during the day and look for inspiration...in people like you! Thanks! Winnie
++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++=
@katiemknor
Thank you for sending me the above private message Winnie. However, I hope you don’t mind that I have placed it on our Forum because I think you have things to add to our storehouse of knowledge as you go along on your journey .. plus I see that Kathryn from our Forum has ALREADY reached out to you to support you! That is the wonderful way our Forum works! Private messages truthfully kind of defeat the wonderful purpose of our sharing Forum .. hope you are ok with that! I think in time you will be really happy with the kindness and sharing you will find from others here on our Forum .. PLUS I am quite sure you will “play it forward” as you are a little further along on YOUR journey! That is just how this Forum has worked .. wonderfully!

Now to details .. I am SO glad you have at least started with a pulmonologist .. BUT in NO way should they have scared you!! Phooey!! I am SOOO glad Kathryn responded to you .. SHE is a teacher .. REALLY in your same boat .. AND still teaching!! You two should really try to stay in touch.

I really think if you “put your energy into what you can control” which is researching a good MAC doctor to get a second opinion .. that will help fill the time .. take you mind off the wait .. plus be sure to read the back pages of this Forum. That is doing your “Due Diligence” in case it is MAC .. so you will be educated about the process. Knowledge truly IS power .. take that power BACK .. into your OWN hands .. educate yourself so that you know what is happening to your body. It truly does help!

Winnie, I would encourage you to post here on the Forum .. once you do .. you will start to receive any new messages from other people .. you will then be kept in the "loop" .. how 'bout that! Neat system huh?

Then keep coming back to the Forum .. really good people here who will be here for you whatever the outcome of the journey. Sending you a Hug! Katherine

Jump to this post

Hello cowboy1997. welcome to our Forum! MAC/MAI stands for Mycobacterium avium complex. The only way you can be diagnosed with it is to have a culture done with mycobacterium taken from your lungs .. it is then cultured. IF mycobacterium is found .. then the process begins. I would NOT put the cart before the horse! If you are concerned you FIRST step would be to google and find an Infectious Disease Pulmonologist who deals with MAC. THEN ask how may patients that doctor has worked with in the past twelve months .. if that satisfies you .. then make GET ALL your medical records from past doctors so that NO unnecessary tests need to be done .. and make an appointment for a SECOND OPINION.

It is IMPORTANT that you NOT go digging for a diagnosis on your own .. you nor I are NOT doctors .. we cannot diagnose ourselves. All we can do is do our "due diligence" and find the correct doctor to do THEIR job .. our job is to NOT worry ourselves to death about the "what if"! I know this is a tough time not knowing just what is going on .. but truth is .. you can't really know right now. Put your energy into what you can control .. which is find the right doctor .. and letting go of what you CANNOT control .. which is the final diagnosis! Sending you a hug on this kinda tough time in your journey! Katherine

p.s. "cowboy" .. I was born and raised in Montana .. didn't leave until I was 23! I know all about cowboys!

REPLY
cowboy1997 | @cowboy1997 | Aug 27, 2016
In reply to @katemn "@katiemknor Hi Katherine, I love how you're such an advocate for us! Your passion and positive..." + (show)
@katemn

@katiemknor Hi Katherine, I love how you're such an advocate for us! Your passion and positive attitude is so appreciated. I understand your suggestion of getting a second opinion. I failed to give you an accurate picture of my medical journey.

Originally I started with a pulmonologist referred to me by my ENT that did nothing but scare me (not needed here, I'm already scared). Fortunately for me my brother in law taught at Tulane 's medical school and referred me to his former colleague Dr Covitz a Pulmonologist who now teaches and works in Chicago (post Katrina). I'm comfortable with my doctor, but now realize I need a good infectious disease doctor...it sounds so scary. If it turns out to be MAC I agree that I need a doctor that specializes with MAC patients.

The waiting for test results and having time on my hands is the worse part for me. I'm 50 years old and I've always been super active. I've been taking several long walks during the day and look for inspiration...in people like you! Thanks! Winnie
++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++=
@katiemknor
Thank you for sending me the above private message Winnie. However, I hope you don’t mind that I have placed it on our Forum because I think you have things to add to our storehouse of knowledge as you go along on your journey .. plus I see that Kathryn from our Forum has ALREADY reached out to you to support you! That is the wonderful way our Forum works! Private messages truthfully kind of defeat the wonderful purpose of our sharing Forum .. hope you are ok with that! I think in time you will be really happy with the kindness and sharing you will find from others here on our Forum .. PLUS I am quite sure you will “play it forward” as you are a little further along on YOUR journey! That is just how this Forum has worked .. wonderfully!

Now to details .. I am SO glad you have at least started with a pulmonologist .. BUT in NO way should they have scared you!! Phooey!! I am SOOO glad Kathryn responded to you .. SHE is a teacher .. REALLY in your same boat .. AND still teaching!! You two should really try to stay in touch.

I really think if you “put your energy into what you can control” which is researching a good MAC doctor to get a second opinion .. that will help fill the time .. take you mind off the wait .. plus be sure to read the back pages of this Forum. That is doing your “Due Diligence” in case it is MAC .. so you will be educated about the process. Knowledge truly IS power .. take that power BACK .. into your OWN hands .. educate yourself so that you know what is happening to your body. It truly does help!

Winnie, I would encourage you to post here on the Forum .. once you do .. you will start to receive any new messages from other people .. you will then be kept in the "loop" .. how 'bout that! Neat system huh?

Then keep coming back to the Forum .. really good people here who will be here for you whatever the outcome of the journey. Sending you a Hug! Katherine

Jump to this post

Thanks for the info. Cowboy was my Yorkshire Dog for 13 wonderful years.

REPLY
Katherine, Alumni Mentor | @katemn | Aug 27, 2016
In reply to @katemn "@katiemknor Hi Katherine, I love how you're such an advocate for us! Your passion and positive..." + (show)
@katemn

@katiemknor Hi Katherine, I love how you're such an advocate for us! Your passion and positive attitude is so appreciated. I understand your suggestion of getting a second opinion. I failed to give you an accurate picture of my medical journey.

Originally I started with a pulmonologist referred to me by my ENT that did nothing but scare me (not needed here, I'm already scared). Fortunately for me my brother in law taught at Tulane 's medical school and referred me to his former colleague Dr Covitz a Pulmonologist who now teaches and works in Chicago (post Katrina). I'm comfortable with my doctor, but now realize I need a good infectious disease doctor...it sounds so scary. If it turns out to be MAC I agree that I need a doctor that specializes with MAC patients.

The waiting for test results and having time on my hands is the worse part for me. I'm 50 years old and I've always been super active. I've been taking several long walks during the day and look for inspiration...in people like you! Thanks! Winnie
++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++=
@katiemknor
Thank you for sending me the above private message Winnie. However, I hope you don’t mind that I have placed it on our Forum because I think you have things to add to our storehouse of knowledge as you go along on your journey .. plus I see that Kathryn from our Forum has ALREADY reached out to you to support you! That is the wonderful way our Forum works! Private messages truthfully kind of defeat the wonderful purpose of our sharing Forum .. hope you are ok with that! I think in time you will be really happy with the kindness and sharing you will find from others here on our Forum .. PLUS I am quite sure you will “play it forward” as you are a little further along on YOUR journey! That is just how this Forum has worked .. wonderfully!

Now to details .. I am SO glad you have at least started with a pulmonologist .. BUT in NO way should they have scared you!! Phooey!! I am SOOO glad Kathryn responded to you .. SHE is a teacher .. REALLY in your same boat .. AND still teaching!! You two should really try to stay in touch.

I really think if you “put your energy into what you can control” which is researching a good MAC doctor to get a second opinion .. that will help fill the time .. take you mind off the wait .. plus be sure to read the back pages of this Forum. That is doing your “Due Diligence” in case it is MAC .. so you will be educated about the process. Knowledge truly IS power .. take that power BACK .. into your OWN hands .. educate yourself so that you know what is happening to your body. It truly does help!

Winnie, I would encourage you to post here on the Forum .. once you do .. you will start to receive any new messages from other people .. you will then be kept in the "loop" .. how 'bout that! Neat system huh?

Then keep coming back to the Forum .. really good people here who will be here for you whatever the outcome of the journey. Sending you a Hug! Katherine

Jump to this post

Cowboy! .. I NEVER meet anyone from Montana so just had to mention that! Katherine

REPLY
boomerexpert | @boomerexpert | Aug 28, 2016
In reply to @debbiec "Local South Florida pulmonologist has confirmed MAC. Treatment to be discussed at next doctor's visit. Internet..." + (show)
@debbiec

Local South Florida pulmonologist has confirmed MAC. Treatment to be discussed at next doctor's visit. Internet research has me worried about possible side effects affecting my ablity to get through work week & be care giver to sick husband. Am wondering if I should seek top notch specialist in local medical/university centers. A penny for your thoughts... Have Rheumatoid Arthritis & have been taken off 9 yr. treatment of Humira which is suspected of having compromised my already weak immune system. Any R.A./MAC patients out there?

Jump to this post

Yep..I'm eavesdropping sort of.received this as we all do with post on<br>discussion board.wanted to respond as I live in the Tampa Bay area.<br><br>Terri<br><br> <br><br>

REPLY
dixer | @dixer | Aug 28, 2016
In reply to @debbiec "Local South Florida pulmonologist has confirmed MAC. Treatment to be discussed at next doctor's visit. Internet..." + (show)
@debbiec

Local South Florida pulmonologist has confirmed MAC. Treatment to be discussed at next doctor's visit. Internet research has me worried about possible side effects affecting my ablity to get through work week & be care giver to sick husband. Am wondering if I should seek top notch specialist in local medical/university centers. A penny for your thoughts... Have Rheumatoid Arthritis & have been taken off 9 yr. treatment of Humira which is suspected of having compromised my already weak immune system. Any R.A./MAC patients out there?

Jump to this post

I live in ocala FL

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