(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

@boomerexpert

Call for comments to the FDA! https://www.bronchiectasisandntminitiative.org/BronchandNTM360social/Community-Discussions/Blog/Article/64/The-FDA-NEEDS-to-Hear-from-You
Here’s what I emailed to the bunch of em’ listed (using the guidelines given at the site above):

“I have bronchiatisis and MAC (and RA…but who’s counting…). Current treatment for bronch (and MAC) is grueling, toxic to the system, and very old school (piling on more heavy antibiotics as what the medical community has currently doesn’t work well anymore…).

I understand you have refused to approve Linhaliq (I am not associated with Aradigm), an inhaled version of ciprofloxacin that has already undergone several clinical trials. Something that could work far better without toxically engaging the rest of my system in treatment (as is the case w/current oral treatments – nausea; extreme fatigue, significant weight loss), and I understand you won’t approve it for reasons such as:
• concern over antibiotic resistance over time (do you think that won’t happen with current treatment protocol?)
• the question wasn’t posed properly (you’d approve for reduction in frequency of exacerbations vs. prolonging initial onset)
• time to first exacerbation is not considered the most appropriate outcome for the bronchiectasis population as it may not adequately reflect whether patients truly do better and feel better on the new treatment (a treatment that extends the time before first exacerbation would be very welcome….we’ll be happy to partake in another clinical trial to prove that with it we can stay well longer).
This shows a significant lack of patient focus, since we need something better than the current treatment devised 25 years ago…and we don’t care in which way it works best, we care that it’s been shown to work.

I, as one of the millions of us w/bronch (many like me with MAC as well)…and the number is growing exponentially…have watched as little meaningful research is done to devise 21st century treatments (that we know can be easily created with just the will to do so) while losing lung function, and getting sicker rather than better (given the current treatment is as bad as the infection). I implore you to reconsider, and do whatever it takes to get us something – this year – that works better than a decades’ old treatment. As I’m sure you hear daily, our lives are literally counting on it.

Thank you.
Terri Benincasa”

Hope all will write…comment period closes Friday.

Jump to this post

@boomerexpert , what an incredible advocate you are! Thank you!

Liked by heathert

REPLY
@windy935

My name is Mariah and I have lived with myobacterium avian and bronchiectasis since 2011–and probably a number of years before then. As some have noted, it was a constant cough that took me to my internal medicine doctor who sent me for a lung x-ray. She thought it was pneumonia and so I started on 10 days of an antibiotic. The x-ray was repeated in 6 weeks–no change. So I had an MRI–I was afraid it might be lung cancer, but my internist assured me that the findings did not fit that of lung cancer. My pulmonologist reviewed the various treatments for MAC and I decided to wait. But, after a year and the symptoms becoming worse I started on the 15 month 3-drug regimen to which I was very faithful although I disliked some of the side effects.

I am now living with bronchiectasis and have seen lung function decline although the tests seem to reveal I am doing okay. Last summer we visited Yosemite and Sequoia. The elevation was very difficult for me–the first time that has occurred. I know my tolerance for exercise is much less, but I persist in walking daily, yoga, etc.

I am happy to be in touch with others who have MAC and know it occurs more in women than in men.

Jump to this post

@tdrell , Do you still get occasional flare-ups?

REPLY
@windy935

My name is Mariah and I have lived with myobacterium avian and bronchiectasis since 2011–and probably a number of years before then. As some have noted, it was a constant cough that took me to my internal medicine doctor who sent me for a lung x-ray. She thought it was pneumonia and so I started on 10 days of an antibiotic. The x-ray was repeated in 6 weeks–no change. So I had an MRI–I was afraid it might be lung cancer, but my internist assured me that the findings did not fit that of lung cancer. My pulmonologist reviewed the various treatments for MAC and I decided to wait. But, after a year and the symptoms becoming worse I started on the 15 month 3-drug regimen to which I was very faithful although I disliked some of the side effects.

I am now living with bronchiectasis and have seen lung function decline although the tests seem to reveal I am doing okay. Last summer we visited Yosemite and Sequoia. The elevation was very difficult for me–the first time that has occurred. I know my tolerance for exercise is much less, but I persist in walking daily, yoga, etc.

I am happy to be in touch with others who have MAC and know it occurs more in women than in men.

Jump to this post

@ling123, Hello Ling. Thank you for the kind words. I have been through hell this past week, but, I am coming out of it, thank goodness.

Liked by ling123

REPLY
@boomerexpert

Call for comments to the FDA! https://www.bronchiectasisandntminitiative.org/BronchandNTM360social/Community-Discussions/Blog/Article/64/The-FDA-NEEDS-to-Hear-from-You
Here’s what I emailed to the bunch of em’ listed (using the guidelines given at the site above):

“I have bronchiatisis and MAC (and RA…but who’s counting…). Current treatment for bronch (and MAC) is grueling, toxic to the system, and very old school (piling on more heavy antibiotics as what the medical community has currently doesn’t work well anymore…).

I understand you have refused to approve Linhaliq (I am not associated with Aradigm), an inhaled version of ciprofloxacin that has already undergone several clinical trials. Something that could work far better without toxically engaging the rest of my system in treatment (as is the case w/current oral treatments – nausea; extreme fatigue, significant weight loss), and I understand you won’t approve it for reasons such as:
• concern over antibiotic resistance over time (do you think that won’t happen with current treatment protocol?)
• the question wasn’t posed properly (you’d approve for reduction in frequency of exacerbations vs. prolonging initial onset)
• time to first exacerbation is not considered the most appropriate outcome for the bronchiectasis population as it may not adequately reflect whether patients truly do better and feel better on the new treatment (a treatment that extends the time before first exacerbation would be very welcome….we’ll be happy to partake in another clinical trial to prove that with it we can stay well longer).
This shows a significant lack of patient focus, since we need something better than the current treatment devised 25 years ago…and we don’t care in which way it works best, we care that it’s been shown to work.

I, as one of the millions of us w/bronch (many like me with MAC as well)…and the number is growing exponentially…have watched as little meaningful research is done to devise 21st century treatments (that we know can be easily created with just the will to do so) while losing lung function, and getting sicker rather than better (given the current treatment is as bad as the infection). I implore you to reconsider, and do whatever it takes to get us something – this year – that works better than a decades’ old treatment. As I’m sure you hear daily, our lives are literally counting on it.

Thank you.
Terri Benincasa”

Hope all will write…comment period closes Friday.

Jump to this post

@boomerexpert, I am so glad that we have your experience to help us fight for recognition, finding better treatment, and more research.

REPLY
@windy935

My name is Mariah and I have lived with myobacterium avian and bronchiectasis since 2011–and probably a number of years before then. As some have noted, it was a constant cough that took me to my internal medicine doctor who sent me for a lung x-ray. She thought it was pneumonia and so I started on 10 days of an antibiotic. The x-ray was repeated in 6 weeks–no change. So I had an MRI–I was afraid it might be lung cancer, but my internist assured me that the findings did not fit that of lung cancer. My pulmonologist reviewed the various treatments for MAC and I decided to wait. But, after a year and the symptoms becoming worse I started on the 15 month 3-drug regimen to which I was very faithful although I disliked some of the side effects.

I am now living with bronchiectasis and have seen lung function decline although the tests seem to reveal I am doing okay. Last summer we visited Yosemite and Sequoia. The elevation was very difficult for me–the first time that has occurred. I know my tolerance for exercise is much less, but I persist in walking daily, yoga, etc.

I am happy to be in touch with others who have MAC and know it occurs more in women than in men.

Jump to this post

@heathert , Ouch! I’ll bet you saw stars when you bit down on that olive pit.

Liked by heathert

REPLY
@windy935

My name is Mariah and I have lived with myobacterium avian and bronchiectasis since 2011–and probably a number of years before then. As some have noted, it was a constant cough that took me to my internal medicine doctor who sent me for a lung x-ray. She thought it was pneumonia and so I started on 10 days of an antibiotic. The x-ray was repeated in 6 weeks–no change. So I had an MRI–I was afraid it might be lung cancer, but my internist assured me that the findings did not fit that of lung cancer. My pulmonologist reviewed the various treatments for MAC and I decided to wait. But, after a year and the symptoms becoming worse I started on the 15 month 3-drug regimen to which I was very faithful although I disliked some of the side effects.

I am now living with bronchiectasis and have seen lung function decline although the tests seem to reveal I am doing okay. Last summer we visited Yosemite and Sequoia. The elevation was very difficult for me–the first time that has occurred. I know my tolerance for exercise is much less, but I persist in walking daily, yoga, etc.

I am happy to be in touch with others who have MAC and know it occurs more in women than in men.

Jump to this post

@nick52 , Thanks Nicole. Can always use good vibes. I sent my husband along to Ca. without me for the second week of our vacation. I opted to stay in Tucson with my many girlfriends (I used to live here) sending him up the road without me; cut my stress level way down LOL! He doesn’t do well with these kinds of situations. I guess because he hates seeing me in such pain and he cannot fix it. I hope to make it down to Fl. to see you before you go home.

REPLY
@windy935

My name is Mariah and I have lived with myobacterium avian and bronchiectasis since 2011–and probably a number of years before then. As some have noted, it was a constant cough that took me to my internal medicine doctor who sent me for a lung x-ray. She thought it was pneumonia and so I started on 10 days of an antibiotic. The x-ray was repeated in 6 weeks–no change. So I had an MRI–I was afraid it might be lung cancer, but my internist assured me that the findings did not fit that of lung cancer. My pulmonologist reviewed the various treatments for MAC and I decided to wait. But, after a year and the symptoms becoming worse I started on the 15 month 3-drug regimen to which I was very faithful although I disliked some of the side effects.

I am now living with bronchiectasis and have seen lung function decline although the tests seem to reveal I am doing okay. Last summer we visited Yosemite and Sequoia. The elevation was very difficult for me–the first time that has occurred. I know my tolerance for exercise is much less, but I persist in walking daily, yoga, etc.

I am happy to be in touch with others who have MAC and know it occurs more in women than in men.

Jump to this post

@irene5, Thank you Irene! All of these well wishes from our group helps me feel better; in my heart anyway.

REPLY
@windy935

My name is Mariah and I have lived with myobacterium avian and bronchiectasis since 2011–and probably a number of years before then. As some have noted, it was a constant cough that took me to my internal medicine doctor who sent me for a lung x-ray. She thought it was pneumonia and so I started on 10 days of an antibiotic. The x-ray was repeated in 6 weeks–no change. So I had an MRI–I was afraid it might be lung cancer, but my internist assured me that the findings did not fit that of lung cancer. My pulmonologist reviewed the various treatments for MAC and I decided to wait. But, after a year and the symptoms becoming worse I started on the 15 month 3-drug regimen to which I was very faithful although I disliked some of the side effects.

I am now living with bronchiectasis and have seen lung function decline although the tests seem to reveal I am doing okay. Last summer we visited Yosemite and Sequoia. The elevation was very difficult for me–the first time that has occurred. I know my tolerance for exercise is much less, but I persist in walking daily, yoga, etc.

I am happy to be in touch with others who have MAC and know it occurs more in women than in men.

Jump to this post

@windwalker It’s a relieve to hear that you are on amends. Sending you positive thought and hugs.

Liked by heathert

REPLY
@boomerexpert

Call for comments to the FDA! https://www.bronchiectasisandntminitiative.org/BronchandNTM360social/Community-Discussions/Blog/Article/64/The-FDA-NEEDS-to-Hear-from-You
Here’s what I emailed to the bunch of em’ listed (using the guidelines given at the site above):

“I have bronchiatisis and MAC (and RA…but who’s counting…). Current treatment for bronch (and MAC) is grueling, toxic to the system, and very old school (piling on more heavy antibiotics as what the medical community has currently doesn’t work well anymore…).

I understand you have refused to approve Linhaliq (I am not associated with Aradigm), an inhaled version of ciprofloxacin that has already undergone several clinical trials. Something that could work far better without toxically engaging the rest of my system in treatment (as is the case w/current oral treatments – nausea; extreme fatigue, significant weight loss), and I understand you won’t approve it for reasons such as:
• concern over antibiotic resistance over time (do you think that won’t happen with current treatment protocol?)
• the question wasn’t posed properly (you’d approve for reduction in frequency of exacerbations vs. prolonging initial onset)
• time to first exacerbation is not considered the most appropriate outcome for the bronchiectasis population as it may not adequately reflect whether patients truly do better and feel better on the new treatment (a treatment that extends the time before first exacerbation would be very welcome….we’ll be happy to partake in another clinical trial to prove that with it we can stay well longer).
This shows a significant lack of patient focus, since we need something better than the current treatment devised 25 years ago…and we don’t care in which way it works best, we care that it’s been shown to work.

I, as one of the millions of us w/bronch (many like me with MAC as well)…and the number is growing exponentially…have watched as little meaningful research is done to devise 21st century treatments (that we know can be easily created with just the will to do so) while losing lung function, and getting sicker rather than better (given the current treatment is as bad as the infection). I implore you to reconsider, and do whatever it takes to get us something – this year – that works better than a decades’ old treatment. As I’m sure you hear daily, our lives are literally counting on it.

Thank you.
Terri Benincasa”

Hope all will write…comment period closes Friday.

Jump to this post

@windwalker thanks T…we all have the experience and grit to fight for better treatments and public awareness of this quickly growing infectious disease…one doc at a time…one letter at a time…one new person educated on it at a time.

REPLY
@windy935

My name is Mariah and I have lived with myobacterium avian and bronchiectasis since 2011–and probably a number of years before then. As some have noted, it was a constant cough that took me to my internal medicine doctor who sent me for a lung x-ray. She thought it was pneumonia and so I started on 10 days of an antibiotic. The x-ray was repeated in 6 weeks–no change. So I had an MRI–I was afraid it might be lung cancer, but my internist assured me that the findings did not fit that of lung cancer. My pulmonologist reviewed the various treatments for MAC and I decided to wait. But, after a year and the symptoms becoming worse I started on the 15 month 3-drug regimen to which I was very faithful although I disliked some of the side effects.

I am now living with bronchiectasis and have seen lung function decline although the tests seem to reveal I am doing okay. Last summer we visited Yosemite and Sequoia. The elevation was very difficult for me–the first time that has occurred. I know my tolerance for exercise is much less, but I persist in walking daily, yoga, etc.

I am happy to be in touch with others who have MAC and know it occurs more in women than in men.

Jump to this post

@windwalker @nick52…where in FL will you be? I’m in the Tampa Bay area

REPLY
@windy935

My name is Mariah and I have lived with myobacterium avian and bronchiectasis since 2011–and probably a number of years before then. As some have noted, it was a constant cough that took me to my internal medicine doctor who sent me for a lung x-ray. She thought it was pneumonia and so I started on 10 days of an antibiotic. The x-ray was repeated in 6 weeks–no change. So I had an MRI–I was afraid it might be lung cancer, but my internist assured me that the findings did not fit that of lung cancer. My pulmonologist reviewed the various treatments for MAC and I decided to wait. But, after a year and the symptoms becoming worse I started on the 15 month 3-drug regimen to which I was very faithful although I disliked some of the side effects.

I am now living with bronchiectasis and have seen lung function decline although the tests seem to reveal I am doing okay. Last summer we visited Yosemite and Sequoia. The elevation was very difficult for me–the first time that has occurred. I know my tolerance for exercise is much less, but I persist in walking daily, yoga, etc.

I am happy to be in touch with others who have MAC and know it occurs more in women than in men.

Jump to this post

@windwalker i am looking forward to see you! I have a nice spare room for you two.  How are you feeling now? Hope the pain has diminish a bit at least! Does your jaw hurt or just your teeth? I was mess up big time with my first jaw surgery.   I had to have

a second surgery of 10 hours to correct the butchery done to my jaw in Portland Maine. So be careful girl!  Do not let anyone convince you of a surgery unless you are absolutely sure you are in the right hand. This was not very well known in 1985 today  good

oral surgeon has the best of the technology. Relax and use heat if it helps!  Gros bisou!

REPLY
@windy935

My name is Mariah and I have lived with myobacterium avian and bronchiectasis since 2011–and probably a number of years before then. As some have noted, it was a constant cough that took me to my internal medicine doctor who sent me for a lung x-ray. She thought it was pneumonia and so I started on 10 days of an antibiotic. The x-ray was repeated in 6 weeks–no change. So I had an MRI–I was afraid it might be lung cancer, but my internist assured me that the findings did not fit that of lung cancer. My pulmonologist reviewed the various treatments for MAC and I decided to wait. But, after a year and the symptoms becoming worse I started on the 15 month 3-drug regimen to which I was very faithful although I disliked some of the side effects.

I am now living with bronchiectasis and have seen lung function decline although the tests seem to reveal I am doing okay. Last summer we visited Yosemite and Sequoia. The elevation was very difficult for me–the first time that has occurred. I know my tolerance for exercise is much less, but I persist in walking daily, yoga, etc.

I am happy to be in touch with others who have MAC and know it occurs more in women than in men.

Jump to this post

@winswalker i am in Largo close to Clearwater.  We are about we are about 20 miles from Amelie arena.  We are going there to watch hockey game.  We are going on the 9th of February.

REPLY
@windy935

My name is Mariah and I have lived with myobacterium avian and bronchiectasis since 2011–and probably a number of years before then. As some have noted, it was a constant cough that took me to my internal medicine doctor who sent me for a lung x-ray. She thought it was pneumonia and so I started on 10 days of an antibiotic. The x-ray was repeated in 6 weeks–no change. So I had an MRI–I was afraid it might be lung cancer, but my internist assured me that the findings did not fit that of lung cancer. My pulmonologist reviewed the various treatments for MAC and I decided to wait. But, after a year and the symptoms becoming worse I started on the 15 month 3-drug regimen to which I was very faithful although I disliked some of the side effects.

I am now living with bronchiectasis and have seen lung function decline although the tests seem to reveal I am doing okay. Last summer we visited Yosemite and Sequoia. The elevation was very difficult for me–the first time that has occurred. I know my tolerance for exercise is much less, but I persist in walking daily, yoga, etc.

I am happy to be in touch with others who have MAC and know it occurs more in women than in men.

Jump to this post

@windwalker ….absolutely get flare-ups….so may not be using the muscle relaxant prior to sleep but will….vary dose between half or whole. It was diagnosed in the Dental section of the medical school. I was referred to a private dentist for RX. The treatment was bite splint and muscle relaxants. He used a nurse anesthtist.sp? who was supposed to hypnotize me. Well the visiting dentist in the corner who was earning CEUs ended up hypnotized but not I. I think the Nurse wanted to shoot me…but I was not able to give up control in a cold room, with itching skin and an impatient person.tdrell

REPLY
@windy935

My name is Mariah and I have lived with myobacterium avian and bronchiectasis since 2011–and probably a number of years before then. As some have noted, it was a constant cough that took me to my internal medicine doctor who sent me for a lung x-ray. She thought it was pneumonia and so I started on 10 days of an antibiotic. The x-ray was repeated in 6 weeks–no change. So I had an MRI–I was afraid it might be lung cancer, but my internist assured me that the findings did not fit that of lung cancer. My pulmonologist reviewed the various treatments for MAC and I decided to wait. But, after a year and the symptoms becoming worse I started on the 15 month 3-drug regimen to which I was very faithful although I disliked some of the side effects.

I am now living with bronchiectasis and have seen lung function decline although the tests seem to reveal I am doing okay. Last summer we visited Yosemite and Sequoia. The elevation was very difficult for me–the first time that has occurred. I know my tolerance for exercise is much less, but I persist in walking daily, yoga, etc.

I am happy to be in touch with others who have MAC and know it occurs more in women than in men.

Jump to this post

@tdrell, yeah, those don’t sound like ideal conditions for hypnosis.

Liked by tdrell

REPLY
@boomerexpert

Call for comments to the FDA! https://www.bronchiectasisandntminitiative.org/BronchandNTM360social/Community-Discussions/Blog/Article/64/The-FDA-NEEDS-to-Hear-from-You
Here’s what I emailed to the bunch of em’ listed (using the guidelines given at the site above):

“I have bronchiatisis and MAC (and RA…but who’s counting…). Current treatment for bronch (and MAC) is grueling, toxic to the system, and very old school (piling on more heavy antibiotics as what the medical community has currently doesn’t work well anymore…).

I understand you have refused to approve Linhaliq (I am not associated with Aradigm), an inhaled version of ciprofloxacin that has already undergone several clinical trials. Something that could work far better without toxically engaging the rest of my system in treatment (as is the case w/current oral treatments – nausea; extreme fatigue, significant weight loss), and I understand you won’t approve it for reasons such as:
• concern over antibiotic resistance over time (do you think that won’t happen with current treatment protocol?)
• the question wasn’t posed properly (you’d approve for reduction in frequency of exacerbations vs. prolonging initial onset)
• time to first exacerbation is not considered the most appropriate outcome for the bronchiectasis population as it may not adequately reflect whether patients truly do better and feel better on the new treatment (a treatment that extends the time before first exacerbation would be very welcome….we’ll be happy to partake in another clinical trial to prove that with it we can stay well longer).
This shows a significant lack of patient focus, since we need something better than the current treatment devised 25 years ago…and we don’t care in which way it works best, we care that it’s been shown to work.

I, as one of the millions of us w/bronch (many like me with MAC as well)…and the number is growing exponentially…have watched as little meaningful research is done to devise 21st century treatments (that we know can be easily created with just the will to do so) while losing lung function, and getting sicker rather than better (given the current treatment is as bad as the infection). I implore you to reconsider, and do whatever it takes to get us something – this year – that works better than a decades’ old treatment. As I’m sure you hear daily, our lives are literally counting on it.

Thank you.
Terri Benincasa”

Hope all will write…comment period closes Friday.

Jump to this post

Well done✌️✌️

REPLY
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