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.

irene5 Irene Estes | @irene5 | Feb 7, 2018
In reply to @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'..." + (show)
@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

So I did the hour interview with the research company. Even though it was mostly comprised of questions requiring personal responses as to my MAC journey, I certainly did my very best to advocate for all of us.

REPLY
boomerexpert | @boomerexpert | Feb 7, 2018
In reply to @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'..." + (show)
@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

I'm confident you did! Glad you let them know just how poorly treated this infection is and how many folks are getting it.

REPLY
irene5 Irene Estes | @irene5 | Feb 7, 2018
In reply to @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'..." + (show)
@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

That I did!

REPLY
nick52 | @nick52 | Feb 7, 2018
In reply to @lindam272 "To those who are using Ridgecrest ClearLungs - Did you notice a gradual decrease in mucous..." + (show)
@lindam272

To those who are using Ridgecrest ClearLungs - Did you notice a gradual decrease in mucous over a period of time or an immediate result? I just started using it a couple of weeks ago taking 2 capsules every 4 hours most days and haven't seen any change in my level of mucous so I'm curious. Thanks so much! Linda

Jump to this post

@lindam272. In my case I saw the difference after few hours I would cough the sputum but if  you haven’t felt a difference it might not be for your problem.  I also realized through the years that when I was eating any fat like cheese, oily food like fried

food , chocolate or anything my liver needed to digest I would have more mucus so i would take Milk Thistle in  liquid (brown liquid) to help the digestion of it so I had to discontinue the oily or fatty food or sugary food.  My experience has told me it is

not only one thing that caused mucus problem.  My major problem was mucus in my throat so It depends is it only mucus in your throat, is it mucus in your lung that  gives you problem breathing.  I found out that food has a lot to do with it .  When I take

clear lungs it was when I was feeling I was wheezing or  with some exercices my breathing was a little more difficult then I would take clear lung  to cough the sputum (the blue cover not the red cover)

 It was working for me.  If it hasn’t work for you after few weeks ??? You may have to reevaluate what could cause mucus?  Keep up the good work lindam you will find where the mucus is from?  I wonder if you are taking probiotics?

REPLY
Jo Ann K | @jkiemen | Feb 8, 2018
In reply to @lindam272 "To those who are using Ridgecrest ClearLungs - Did you notice a gradual decrease in mucous..." + (show)
@lindam272

To those who are using Ridgecrest ClearLungs - Did you notice a gradual decrease in mucous over a period of time or an immediate result? I just started using it a couple of weeks ago taking 2 capsules every 4 hours most days and haven't seen any change in my level of mucous so I'm curious. Thanks so much! Linda

Jump to this post

My main problem always seemed to be the mucus in my throat. It never seemed to come up from the lungs,

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Feb 8, 2018
In reply to @lindam272 "To those who are using Ridgecrest ClearLungs - Did you notice a gradual decrease in mucous..." + (show)
@lindam272

To those who are using Ridgecrest ClearLungs - Did you notice a gradual decrease in mucous over a period of time or an immediate result? I just started using it a couple of weeks ago taking 2 capsules every 4 hours most days and haven't seen any change in my level of mucous so I'm curious. Thanks so much! Linda

Jump to this post

@jkiemen , sounds like post nasal drip. Could be allergy to something. Like Linda said, many times it is a food allergy. If you haven't already, try reading books by Dr. Andrew Weil. I credit him for my path to wellness.

REPLY
ling123 | @ling123 | Feb 8, 2018
In reply to @lindam272 "To those who are using Ridgecrest ClearLungs - Did you notice a gradual decrease in mucous..." + (show)
@lindam272

To those who are using Ridgecrest ClearLungs - Did you notice a gradual decrease in mucous over a period of time or an immediate result? I just started using it a couple of weeks ago taking 2 capsules every 4 hours most days and haven't seen any change in my level of mucous so I'm curious. Thanks so much! Linda

Jump to this post

@jkiemen It's exactly the same with me. I constantly need to clear my throat and would cough up thick stuff. But it never feels like it comes up from the lungs. Before my bronchiectasis diagnosis, every doctor I saw thought it was postnasal drip that caused the mucus in my throat. I tried just about everything for allergies and sinuses. Nothing really worked. I do have allergies. But the mucus does not just come when I'm in an environment where allergens exist. To this day, nobody can tell me exactly what causes the mucus. I think it is the combination of bronchiectasis, allergies and postnasal drip. I have more mucus when I first wake up in the morning and when I'm cold. I think being horizontal makes it easy for the mucus from the bronchioles to collect in my throat. Being cold would cause postnasal drip. I have given up on trying to find the cause. Bronchiectasis has no cure anyway. Allergy meds and shots have not helped long term. So it will just be waste of energy looking for answers.

REPLY
irene5 Irene Estes | @irene5 | Feb 8, 2018
In reply to @lindam272 "To those who are using Ridgecrest ClearLungs - Did you notice a gradual decrease in mucous..." + (show)
@lindam272

To those who are using Ridgecrest ClearLungs - Did you notice a gradual decrease in mucous over a period of time or an immediate result? I just started using it a couple of weeks ago taking 2 capsules every 4 hours most days and haven't seen any change in my level of mucous so I'm curious. Thanks so much! Linda

Jump to this post

Which particular book of his do you recommend? Thank you.

REPLY
Jo Ann K | @jkiemen | Feb 8, 2018
In reply to @lindam272 "To those who are using Ridgecrest ClearLungs - Did you notice a gradual decrease in mucous..." + (show)
@lindam272

To those who are using Ridgecrest ClearLungs - Did you notice a gradual decrease in mucous over a period of time or an immediate result? I just started using it a couple of weeks ago taking 2 capsules every 4 hours most days and haven't seen any change in my level of mucous so I'm curious. Thanks so much! Linda

Jump to this post

One ENT I saw said it could be GERD and I tried Ranitidine and that didn't do any thing. He also said it could be the MAC and it could be in the throat causing inflammation, it is a little less since I have been on the antibiotics.

REPLY
egayle187 | @egayle187 | Feb 8, 2018
In reply to @lindam272 "To those who are using Ridgecrest ClearLungs - Did you notice a gradual decrease in mucous..." + (show)
@lindam272

To those who are using Ridgecrest ClearLungs - Did you notice a gradual decrease in mucous over a period of time or an immediate result? I just started using it a couple of weeks ago taking 2 capsules every 4 hours most days and haven't seen any change in my level of mucous so I'm curious. Thanks so much! Linda

Jump to this post

Please do not give up looking for answers. Now that we have this forum, we can educate ourselves and take advantage of new research.
I recently read Dr. Jamie Koufman's book, The Chronic Cough Enigma. It has questionnaires to help find the cause of for each individual. She introduces the concept of Airway reflux that fits my symptoms well. The diet is strict and you can't lie down for three hours after eating, but it is worth trying. Coughing all the time is exhausting, but finding and addressing the cause of your mucus will give you a new lease on life.

REPLY
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