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!

++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
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.

terryb1 | @128128terry11t | Jan 8, 2017
In reply to @katemn "@128128terry11t Terry, OH what a tough time you have had! But I am SO glad you..." + (show)
@katemn

@128128terry11t Terry, OH what a tough time you have had! But I am SO glad you have found us! Please do stay on this Forum .. you will find such kind supportive people .. PLUS if you take the time to read the past pages you will find a wealth of information on just how to handle the antibiotics .. potential side effects .. just plain healthy living and positive thinking! We are all on this same journey .. gathered together to help each other. I would PLEASE advise you NOT to "private message" .. by each of us sharing our fears .. symptoms .. ideas .. tips .. just thoughts even .. we help each other on our shared journey. Gathered together we strengthen each other .. as it has been said 'The whole is greater than the sum of its parts.' .

Be SURE to take your Rifampin FIRST thing in the morning on an EMPTY stomach .. it is notorious for sleep disturbance. You should have been told that in my opinion! As you read through the pages you will read that! You will also read about the various baseline testing you should have ASAP.

I also have Bronchiectasis .. cough up blood periodically. The first time I spoke of this to my beloved Dr. Aksamit of Mayo Clinic, Rochester MN .. he did not seem in the least concerned .. just asked me the quantity .. if fresh .. darker .. clots? Since it has never been in excess of perhaps 1/2 tsp in total fresh blood .. an occasional blood clot .. only darker blood later on as I cough up the last of it .. he has never been concerned. SO .. if your coughed up blood is within these parameters .. do NOT be afraid .. it is just a part of Bronchiectasis!

As I just mention to another Forum member: (RIFAMPIN INTERFERS WITH LIVER ABSORBSON OF SYNTHROID) .. so be aware of this if you take that med .. you may have to increase your Synthroid. Keep getting it checked. Frequently need to increase 25mg. Also make SURE you do NOT get a generic .. name brand only .. generics can vary!

You need NOT feel desperate .. we are here for you .. gathered together to help you through this tough time. Sending you a BIG Hug! Katherine

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You made my day.  I thought I was the only one with a severe computer skills deficiency.  I just hit "respond", write and send it off.  I can only hope that it reaches the intended destination.I am looking for a heart under reply to acknowledge that I have read an email.  I have a MAC so if someone is out there reading this, would enjoy knowing where to find the "heart".Terry

REPLY
Katherine, Alumni Mentor | @katemn | Jan 8, 2017
In reply to @katemn "@128128terry11t Terry, OH what a tough time you have had! But I am SO glad you..." + (show)
@katemn

@128128terry11t Terry, OH what a tough time you have had! But I am SO glad you have found us! Please do stay on this Forum .. you will find such kind supportive people .. PLUS if you take the time to read the past pages you will find a wealth of information on just how to handle the antibiotics .. potential side effects .. just plain healthy living and positive thinking! We are all on this same journey .. gathered together to help each other. I would PLEASE advise you NOT to "private message" .. by each of us sharing our fears .. symptoms .. ideas .. tips .. just thoughts even .. we help each other on our shared journey. Gathered together we strengthen each other .. as it has been said 'The whole is greater than the sum of its parts.' .

Be SURE to take your Rifampin FIRST thing in the morning on an EMPTY stomach .. it is notorious for sleep disturbance. You should have been told that in my opinion! As you read through the pages you will read that! You will also read about the various baseline testing you should have ASAP.

I also have Bronchiectasis .. cough up blood periodically. The first time I spoke of this to my beloved Dr. Aksamit of Mayo Clinic, Rochester MN .. he did not seem in the least concerned .. just asked me the quantity .. if fresh .. darker .. clots? Since it has never been in excess of perhaps 1/2 tsp in total fresh blood .. an occasional blood clot .. only darker blood later on as I cough up the last of it .. he has never been concerned. SO .. if your coughed up blood is within these parameters .. do NOT be afraid .. it is just a part of Bronchiectasis!

As I just mention to another Forum member: (RIFAMPIN INTERFERS WITH LIVER ABSORBSON OF SYNTHROID) .. so be aware of this if you take that med .. you may have to increase your Synthroid. Keep getting it checked. Frequently need to increase 25mg. Also make SURE you do NOT get a generic .. name brand only .. generics can vary!

You need NOT feel desperate .. we are here for you .. gathered together to help you through this tough time. Sending you a BIG Hug! Katherine

Jump to this post

Annie, you're HERE! You're IN! All you have to do now is post .. just like you did with this one! Any questions .. comments .. tips .. whatever! Welcome! Hugs, Katherine

REPLY
terryb1 | @128128terry11t | Jan 8, 2017

Thanks. I found the heart. I didn't know that you had to go to post. Kept looking for it in the email. Duh! Terry

REPLY
Katherine, Alumni Mentor | @katemn | Jan 8, 2017
In reply to @katemn "@128128terry11t Terry, OH what a tough time you have had! But I am SO glad you..." + (show)
@katemn

@128128terry11t Terry, OH what a tough time you have had! But I am SO glad you have found us! Please do stay on this Forum .. you will find such kind supportive people .. PLUS if you take the time to read the past pages you will find a wealth of information on just how to handle the antibiotics .. potential side effects .. just plain healthy living and positive thinking! We are all on this same journey .. gathered together to help each other. I would PLEASE advise you NOT to "private message" .. by each of us sharing our fears .. symptoms .. ideas .. tips .. just thoughts even .. we help each other on our shared journey. Gathered together we strengthen each other .. as it has been said 'The whole is greater than the sum of its parts.' .

Be SURE to take your Rifampin FIRST thing in the morning on an EMPTY stomach .. it is notorious for sleep disturbance. You should have been told that in my opinion! As you read through the pages you will read that! You will also read about the various baseline testing you should have ASAP.

I also have Bronchiectasis .. cough up blood periodically. The first time I spoke of this to my beloved Dr. Aksamit of Mayo Clinic, Rochester MN .. he did not seem in the least concerned .. just asked me the quantity .. if fresh .. darker .. clots? Since it has never been in excess of perhaps 1/2 tsp in total fresh blood .. an occasional blood clot .. only darker blood later on as I cough up the last of it .. he has never been concerned. SO .. if your coughed up blood is within these parameters .. do NOT be afraid .. it is just a part of Bronchiectasis!

As I just mention to another Forum member: (RIFAMPIN INTERFERS WITH LIVER ABSORBSON OF SYNTHROID) .. so be aware of this if you take that med .. you may have to increase your Synthroid. Keep getting it checked. Frequently need to increase 25mg. Also make SURE you do NOT get a generic .. name brand only .. generics can vary!

You need NOT feel desperate .. we are here for you .. gathered together to help you through this tough time. Sending you a BIG Hug! Katherine

Jump to this post

@128128terry11t, Terry, LOVED the way you put it! At age 73 now I say my "gratitudes" .. I have a good life with many things to be grateful for! Hugs! Katherine

REPLY
Kathryn S Wilbur | @kwilbur | Jan 8, 2017
In reply to @katemn "I was told no .. BUT I always felt that my lungs were weakened by a..." + (show)
@katemn

I was told no .. BUT I always felt that my lungs were weakened by a serious bout with pneumonia in 2003. I was seriously ill for three months .. put on five rounds of antibiotics .. 3 rounds of steroids by my internist. NOT ONCE was my sputum cultured to see which antibiotic was effective against whatever bacteria was affecting me! At that point I was not educated to the point of DEMANDING a culture .. too little to late. I was SO ill! Finally was diagnosed with MAI/MAC in 2007 via a sputum culture.

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Katherine, please excuse me for using this address - I know there is another which I can't find right now. Could I be taken out of the forum l until a later date? I can't keep up. I am focusing on getting a French Academic Team ready for a competition in March. I have to watch my diet and energy level closely - I recoup on weekends. I know I will be back in contact as my lungs continue to keep me at less than 80% of my energy level but the alternative seems harder to face if I want to keep working. So I want you to know and all the other contributors to this forum how much their experiences have helped me but now I am unable to keep up with the Thank you all for your understanding. I will be back! Kathryn

REPLY
Katherine, Alumni Mentor | @katemn | Jan 8, 2017
In reply to @katemn "I was told no .. BUT I always felt that my lungs were weakened by a..." + (show)
@katemn

I was told no .. BUT I always felt that my lungs were weakened by a serious bout with pneumonia in 2003. I was seriously ill for three months .. put on five rounds of antibiotics .. 3 rounds of steroids by my internist. NOT ONCE was my sputum cultured to see which antibiotic was effective against whatever bacteria was affecting me! At that point I was not educated to the point of DEMANDING a culture .. too little to late. I was SO ill! Finally was diagnosed with MAI/MAC in 2007 via a sputum culture.

Jump to this post

@kwilbur, Hello Kathryn, Good luck on your Team in March! Below is how/what I was told to do with your situation .. hope it helps! Do keep us posted and come back WHEN it is right for you .. we will still be here! Hugs to you! Katherine

**I understand that the volume of emails from Connect can get overwhelming at times, especially when dealing with your health. You can control your account settings here: https://connect.mayoclinic.org/account
You can: - Turn off all email notifications
OR - Select to receive only those groups and discussions you follow

Please let me know if you need further help in how to do this, but writing to me here: https://connect.mayoclinic.org/contact-a-community-moderator/

PS: You can also click unsubscribe at the bottom of any email you receive from Connect.

REPLY
Katherine, Alumni Mentor | @katemn | Jan 8, 2017

Dear All! As I watched this I realized I was NOT diaphragmatic breathing .. I was shallow upper breathing!  I plan to make a note and place it where I will see it .. THEN do it several x a day! Hope you find it helpful!

Belly Breathing Helps to Strengthen Lungs
https://bronchiectasisnewstoday.com/social-clips/2016/11/16/ten-key-facts-about-bronchiectasis/


3 IN .. 3 HOLD .. 4 BREATHE OUT

2 MIN. SEVERAL X PER DAY

REPLY
2 replies
Katherine, Alumni Mentor | @katemn | Jan 8, 2017

@david1952, David just read about the important with Bronchiectasis for having our Vitamin D tested at intervals! Thought I'd share that with you. Katherine

REPLY
heathert | @heathert | Jan 8, 2017
In reply to @katemn "Dear All! As I watched this I realized I was NOT diaphragmatic breathing .. I was..." + (show)
@katemn

Dear All! As I watched this I realized I was NOT diaphragmatic breathing .. I was shallow upper breathing!  I plan to make a note and place it where I will see it .. THEN do it several x a day! Hope you find it helpful!

Belly Breathing Helps to Strengthen Lungs
https://bronchiectasisnewstoday.com/social-clips/2016/11/16/ten-key-facts-about-bronchiectasis/


3 IN .. 3 HOLD .. 4 BREATHE OUT

2 MIN. SEVERAL X PER DAY

Jump to this post

thanks @katemn I need reminding at times too.. Great video!

REPLY
Katherine, Alumni Mentor | @katemn | Jan 8, 2017
In reply to @katemn "@128128terry11t Terry, OH what a tough time you have had! But I am SO glad you..." + (show)
@katemn

@128128terry11t Terry, OH what a tough time you have had! But I am SO glad you have found us! Please do stay on this Forum .. you will find such kind supportive people .. PLUS if you take the time to read the past pages you will find a wealth of information on just how to handle the antibiotics .. potential side effects .. just plain healthy living and positive thinking! We are all on this same journey .. gathered together to help each other. I would PLEASE advise you NOT to "private message" .. by each of us sharing our fears .. symptoms .. ideas .. tips .. just thoughts even .. we help each other on our shared journey. Gathered together we strengthen each other .. as it has been said 'The whole is greater than the sum of its parts.' .

Be SURE to take your Rifampin FIRST thing in the morning on an EMPTY stomach .. it is notorious for sleep disturbance. You should have been told that in my opinion! As you read through the pages you will read that! You will also read about the various baseline testing you should have ASAP.

I also have Bronchiectasis .. cough up blood periodically. The first time I spoke of this to my beloved Dr. Aksamit of Mayo Clinic, Rochester MN .. he did not seem in the least concerned .. just asked me the quantity .. if fresh .. darker .. clots? Since it has never been in excess of perhaps 1/2 tsp in total fresh blood .. an occasional blood clot .. only darker blood later on as I cough up the last of it .. he has never been concerned. SO .. if your coughed up blood is within these parameters .. do NOT be afraid .. it is just a part of Bronchiectasis!

As I just mention to another Forum member: (RIFAMPIN INTERFERS WITH LIVER ABSORBSON OF SYNTHROID) .. so be aware of this if you take that med .. you may have to increase your Synthroid. Keep getting it checked. Frequently need to increase 25mg. Also make SURE you do NOT get a generic .. name brand only .. generics can vary!

You need NOT feel desperate .. we are here for you .. gathered together to help you through this tough time. Sending you a BIG Hug! Katherine

Jump to this post

Bronchiectasis .. just listened to a GREAT video .. give it a try! Really good info! Thanks to Mayrjo I am learning SO much more about my own Disease Bronchiectasis than I've ever taken the time to learn! Frankly when first diagnosed I read a lot .. but kind of forgot about it .. just cough away. This is really helpful .. thank you Maryjo! Hugs! Katherine

WONDERFUL INFO FROM M.D. Dr. William Girard of University of Texas Health

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