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.

Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jan 21, 2017
In reply to @katemn "@pamelasc1 , Pamela, so glad you contacted me! The below link will take you to our..." + (show)
@katemn

@pamelasc1 , Pamela, so glad you contacted me! The below link will take you to our Forum .. then you can read the past pages .. and/or post any questions you might have. Hope things go well for you in April .. keep us posted! Go to the below link .. PLUS I am going to repeat this post in that same Forum .. then you can just hit "Reply" to get started with any question you might have .. that should work just fine! Welcome Back! Hugs! Katherine
https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/?pg=20

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<br><br><br><br><br>Hello Pamela, I am catching up on older posts; so excuse me if I am <br>repeating anybody. It sounds like you would benefit from nighttime oxygen when <br>you visit them. You can rent a portable oxygen concentrator online. I would <br>recommend the Sequel Eclipse 3 because it is the only one with a continuous flow <br>option. you can have it delivered right to their house. Of course, RUN IT PAST <br>YOUR DR FIRST.<br> <br><br>

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jan 21, 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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<br><br><br><br><br>Terry, do you use nebulized albuterol by any chance? If so, that can cause <br>all of those symptoms you mentioned. If you are using that, there is an <br>alternative kind that does not cause those side effects. I am on that myself. It <br>is called Levalbuterol.<br> <br><br>

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jan 21, 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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<br><br><br><br><br>Amen!<br> <br><br>

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jan 21, 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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<br><br><br><br><br>I know of two good nebulized antibiotics that treat mac and other nasties. <br>They are Tobramycin and Colistlin. They are generally used to <br>treat those with cystic fibrosis because they catch all of the bad <br>"critters". So far, the tobi is working for me.<br> <br><br>

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jan 21, 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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<br><br><br><br><br>Good question. I am going to ask my dr about that when I see him next. (in <br>June)<br> <br><br>

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colapyrus | @colapyrus | Jan 21, 2017

I have been diagnosed recently with MAI and bronchiectasis but have very few symptoms. I have been reading the the previous posts (pages 1-10, 18-23) and have not read about many people having surgery to take out the damaged part of the lungs. My culture was negative for MAI for the first month and then it showed positive at the end. I'm assuming that means I don't have a high concentration of the bacteria in my lungs yet. The sample came from a bronchoscopy so I think it is reliable. My doctor has mentioned that I might be a good candidate for surgery but I'm not sure what that means. I haven't been to see an Infectious Disease dr yet or surgeon to talk about treatment but I thought I would ask the question here since you have been in the trenches so to speak. If they took out the right middle lobe (where the bronchiectasis is located) would I still be put on the meds treatment? Would they probably want me to be on the meds until I have the 12 months of negative sputum results before the surgery? Just wondering if anyone has any thoughts on this? Thanks. Jan

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4 replies
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jan 21, 2017
In reply to @colapyrus "I have been diagnosed recently with MAI and bronchiectasis but have very few symptoms. I have..." + (show)
@colapyrus

I have been diagnosed recently with MAI and bronchiectasis but have very few symptoms. I have been reading the the previous posts (pages 1-10, 18-23) and have not read about many people having surgery to take out the damaged part of the lungs. My culture was negative for MAI for the first month and then it showed positive at the end. I'm assuming that means I don't have a high concentration of the bacteria in my lungs yet. The sample came from a bronchoscopy so I think it is reliable. My doctor has mentioned that I might be a good candidate for surgery but I'm not sure what that means. I haven't been to see an Infectious Disease dr yet or surgeon to talk about treatment but I thought I would ask the question here since you have been in the trenches so to speak. If they took out the right middle lobe (where the bronchiectasis is located) would I still be put on the meds treatment? Would they probably want me to be on the meds until I have the 12 months of negative sputum results before the surgery? Just wondering if anyone has any thoughts on this? Thanks. Jan

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<br><br><br><br><br>Hello Jan, I feel like your questions are better suited for your doctors <br>because there may be too many variables to consider. Your dr would need to <br>do more extensive testing to determine if surgery would be a good option for <br>you. In the meantime, I would google all of the info I could on the subject. I <br>have found that when I research medical things; that a lot can be learned if you <br>look up some of these specialists drs that work at teaching medical instutions. <br>When you look them up, they list the publications they have contributed to. They <br>are usually short articles where they comment on treatments, studies, etc. <br>Please keep us posted. -hugs!  Terri M.<br> <br><br>

REPLY
pamelasc | @pamelasc1 | Jan 21, 2017
In reply to @katemn "@pamelasc1 , Pamela, so glad you contacted me! The below link will take you to our..." + (show)
@katemn

@pamelasc1 , Pamela, so glad you contacted me! The below link will take you to our Forum .. then you can read the past pages .. and/or post any questions you might have. Hope things go well for you in April .. keep us posted! Go to the below link .. PLUS I am going to repeat this post in that same Forum .. then you can just hit "Reply" to get started with any question you might have .. that should work just fine! Welcome Back! Hugs! Katherine
https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/?pg=20

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this is a reply to "windwalker"  who mentioned the use of a rented portable oxygen device when I am at higher altitudes.  Can you tell me how it works? Is it a mask you put over your face and sleep with all night?  I will talk to my doctor about it and I thank you VERY much for bringing this to my attention.  Pamela    

REPLY
pamelasc | @pamelasc1 | Jan 21, 2017
In reply to @katemn "@pamelasc1 , Pamela, so glad you contacted me! The below link will take you to our..." + (show)
@katemn

@pamelasc1 , Pamela, so glad you contacted me! The below link will take you to our Forum .. then you can read the past pages .. and/or post any questions you might have. Hope things go well for you in April .. keep us posted! Go to the below link .. PLUS I am going to repeat this post in that same Forum .. then you can just hit "Reply" to get started with any question you might have .. that should work just fine! Welcome Back! Hugs! Katherine
https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/?pg=20

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this is in reply to Terri M. who wrote about being able to walk farther eventually, but  using nebulized tobramyscin.  Can you answer a few questions for me:I understand you are using the tobramycin now, but did you first begin with the 18 month regimen of the 3 basic drugs?  How long did you take those, before going to the tobramycin?  Will you be using it now for the rest of your life?  Did the MAC return at any point after that initial treatment?  If you have been stable, how long have you been stable with no coughing?   Thank you!  Pamela   

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tdrell | @tdrell | Jan 21, 2017
In reply to @kwilbur "I, too, have a cavitary nodule in my right upper lobe but it has decreased in..." + (show)
@kwilbur

I, too, have a cavitary nodule in my right upper lobe but it has decreased in size. So I keep waiting. I don't know if I have MAC but continue with cscans every three months. Your testimony is encouraging. The bronchiecticus (the spelling defies me!) is something I can live with, but I am concerned about being able to work while taking meds if I do have a bronchoscopy and am diagnosed with MAC. I just celebrated half a year of working with a holiday party for over thirty people. Your story and others' experiences have truly helped me from panicking. When and if I do begin taking medication I certainly will be back for advice!

Happy New Year 2017 to us all! Kathryn

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Windwalker...A plug for Denver National Jewish Health ! Terrid

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