(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!

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

@katemn

@pfists So glad you found our Forum, you have had a tough time of it! You are SO lucky to have gotten an appointment with Dr. Aksamit at Mayo Clinic .. he is just wonderful .. you are going to love him .. you will be in good hands! I also had MAC abscesses and Bronchiectasis .. he will know just what to do! I would encourage you to read the past pages of our Forum .. you will learn SO much about our shared disease .. meet some really wonderful and supportive people! We are all this same shared journey together. Hugs to you! Katherine

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Hi Katherine, I wonder if Dr. Askamit would treat me any differently than
my Dr at the Jax Mayo. Will have to discuss with my dr when I see him in June.
-Terri M.
 

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@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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Amazing how many drs will treat without a sputem culture. I went 15 yrs
with lung illness before I was given a sputem test!! I didn’t know to ask for
one either. That was before internet,
 

REPLY
@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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Same here Terry!
 

REPLY
@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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David, I think most of us on this forum has both. You are in the right
place. -Terri M.
 

REPLY
@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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Strange, but a whole weeks worth of emails from this site from the first
week in Jan, suddenly appeared on my computer. I apologize for not responding
sooner, Terry. I hope you are doing so much better these days. Hugs -Terri
M.
 
 

REPLY
@katemn

@jentaylor Hi Jen, I think this is just so great! You will come back to our Forum with all kinds of notes and information to share! Can’t wait to hear all about it .. but I will be a proud Grammy watching my final little one walk across that stage getting her college diploma! Both wonderful events! Keep good notes to share! Hugs! Katherine

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@windwalker, Terri .. and all, you may see Dr Aksamit in person but I doubt you can possibly feel his tremendous personal caring and warmth from the podium .. I feel it in his hugs .. just love that man! If anyone gets a chance to see him personally or chat with him .. you can tell him PERSOALLY that your “Mayo Clinic Connect Mentor Katherine” thinks he “walks on water” .. AND that she is only missing this event because of her granddaughter’s college graduation! I think he will get a chuckle out of that! Hugs to all! Katherine

Liked by tdrell

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@katemn

@pfists So glad you found our Forum, you have had a tough time of it! You are SO lucky to have gotten an appointment with Dr. Aksamit at Mayo Clinic .. he is just wonderful .. you are going to love him .. you will be in good hands! I also had MAC abscesses and Bronchiectasis .. he will know just what to do! I would encourage you to read the past pages of our Forum .. you will learn SO much about our shared disease .. meet some really wonderful and supportive people! We are all this same shared journey together. Hugs to you! Katherine

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@windwalker, Terri, I do NOT think ANY good doctor should be offended if you RESPECTFULLY say:

Have you heard or are you are aware that Mayo Clinic has a wonderful support system for all kinds of medical issues including lung diseases? I was lucky enough to find one for my MAC disease! It is called Mayo Clinic Connect MAC & Bronchiectasis. This particular MAC Forum is Mentored by a woman by the name of Katherine who has been seen by Dr. Timothy Aksamit Mayo Clinic in Rochester Minnesota. She has so repeatedly spoken highly of him that I chose to go to the 2017 NTM & Bronchiectasis Physician/Patient Conference Friday, May 19, 2017 at Georgetown University in Washington, D.C. to hear him speak. I was very impressed.

Doctor, may I REQUEST that you consult with Dr. Aksamit on my complex medical case since I know that Mayo Clinic is FAMOUS for their doctors working as a team effort in working with patients. After dealing with the medical community for over 20 years without a good resolution for my health .. this is why I came to Mayo Clinic .. you are “mecca” .. I know I am in the right place .. and that you will do the right thing for me!

Terri, practice your little speech until it sound natural .. then DO IT!! Keep me posted on how it goes! Remember, Girl, YOU are your own BEST advocate! YOU are the only one who cares about you body as much as YOU do .. TAKE CARE OF IT! Hugs! Katherine

REPLY
@katemn

@pfists So glad you found our Forum, you have had a tough time of it! You are SO lucky to have gotten an appointment with Dr. Aksamit at Mayo Clinic .. he is just wonderful .. you are going to love him .. you will be in good hands! I also had MAC abscesses and Bronchiectasis .. he will know just what to do! I would encourage you to read the past pages of our Forum .. you will learn SO much about our shared disease .. meet some really wonderful and supportive people! We are all this same shared journey together. Hugs to you! Katherine

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All my Drs here at home were glad I was going to Mayo as they were stumped about my high fevers.  It was a relief to me to have the second opinions as well knowing my drs were on the right track.  Drs. Should want to help patients in anyway possible.  I just phrased it as I was wanting a second opinion.

REPLY
@katemn

@pfists So glad you found our Forum, you have had a tough time of it! You are SO lucky to have gotten an appointment with Dr. Aksamit at Mayo Clinic .. he is just wonderful .. you are going to love him .. you will be in good hands! I also had MAC abscesses and Bronchiectasis .. he will know just what to do! I would encourage you to read the past pages of our Forum .. you will learn SO much about our shared disease .. meet some really wonderful and supportive people! We are all this same shared journey together. Hugs to you! Katherine

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@jillnc .. Jill, you are SO correct! Good doctors will NOT be offended by a request for a second opinion! In my opinion only a doctor who is insecure will! Thanks for jumping in with a confirmation of your experience! Hugs! Katherine

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@jentaylor

Hi, it’s Jen, the newer member! I read someone’s post regarding the 1 day conference in DC on May 19th. I live only 3 1/2hrs away so my husband can tag along & do the driving. I wanted to make sure you all to know that the registration is FREE!!! And since it starts at 8:30am, I booked a room at the Days Inn on Connecticut Ave. it is the Northwest side of town which is where Georgetown University is located. I must say, I don’t know how nice the hotel is but it’s the best deal I could get & it has good ratings by Trip Advisor who I trust. The rate is $189+tax. That is nearly 1/2 of the rate that the Conferamce set aside a group of rooms at the Marriott which was VERY expensive! Someone mentioned that if anyone else was going, we could meet up in DC & say hello or have dinner together! I to copy the link & post it here but it isn’t working for me! Here’s the name to look up: NTM/Bronchiectasis Physician/Patient Conference 2017

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189 on Connecticut Ave is a good deal!

REPLY
@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

@david1952, David, haven’t heard from you in a while .. wondering how you are doing? Just let us know so we don’t worry! Hope all is well! Hugs to you! Katherine

REPLY
@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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Hi Kate and all,Having a good month – gained 2.5 lbs.!  Appetite getting better.   Still testing positive for MAc after 6 months on meds, but cough is moderating, so that’s good!Blessings to all,David

REPLY
@katemn

@jentaylor Hi Jen, I think this is just so great! You will come back to our Forum with all kinds of notes and information to share! Can’t wait to hear all about it .. but I will be a proud Grammy watching my final little one walk across that stage getting her college diploma! Both wonderful events! Keep good notes to share! Hugs! Katherine

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Folks….when you register for the Washington DC conference….could you ask if they are videoing it ?? To be shown to the public in the future?many thanks terriD

REPLY
@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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@david1952, David, so good to hear from you .. and even better to hear such good news! Good for you! Check in occasionally whenever you feel like it .. good news or whatever .. we are always here for you! Sending you a hug! Katherine

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Hello All, I am a very curious person .. always open to learning new things .. just happened upon the below .. thought I’d share it in care anyone is interested .. I went to the bottom of the page .. asked to subscribe .. think it will be interesting to see what medical things are being written about! Who knows what I’ll learn! Hugs! Katherine

Mayo Clinic in the News Weekly Highlights
http://inthenews.mayoclinic.org/2015/04/09/mayo-clinic-in-the-news-weekly-highlights-159/

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