(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!

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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:

  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

@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

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Thank you so much. I will definitely check that one out!

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@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

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@ling123 Lol. I NEVER noticed I did it until about 10 years ago in a class I was taking, the professor brought it to my attention and suggested I go to an ENT. The Dr said I had acid reflux. I wish they had known then that it could cause nodules and lead to MAI. My husband used to complain I coughed at night. Since using my Aerobika I don’t THINK I do the throat clearing as much or cough at night (I also sleep with a wedge).

Liked by ling123

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@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

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@ginak I never thought about the possibility of having acid reflux until I found this site. My pulmonology doctor said if I had acid reflux, it would be a silent one because I don’t have any typical symptoms. I had it checked out and I don’t have it. My poor husband has had to live with this for 20 some years. He had asked me if I had tried any stronger cough suppressant other than cough drops. But he stopped asking after I was diagnosed with bronchiectasis and MAC and was told by my pulmonary doctor that suppressing coughs that can help bring up the mucus from lungs would be conducive to creating hot bed for MAC bacteria. So now both us have learned to live with this. I figure there are much worse things that humans have to endure.

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@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

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Sorry to interrupt, but do u mean the bottle itself is a red cover. Have seen this on ridge rest . Looking for blue cover then. What is the difference?????

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@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

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I just ordered it myself. Ordered the red bottle extra strength . What type did u order???

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@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

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@megan123. I use the blue one because it RELIEVE CONGESTION.   The red one doesn’t if you use it to balance mucus levels the diet of low mucus must accompanied it during treatment.  If you eat mucus forming all the time I don’t know how effective it would be.

 

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@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

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@megan123 the blue bottle Extra Strenght

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@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

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I ordered the extra strength one….meant blue bottle. Lol✌️

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@lindam272

And this yesterday – This is a town hall that you can participate in by phone:

Dear Community Members,

We are excited to announce our second Town Hall teleconference: A Dive into Bronchiectasis and NTM! This event will take place via teleconference on Monday, March 5, 2018 from 2pm to 3pm EST, with expert speaker Dr. Tim Aksamit from the Mayo Clinic. This is a unique opportunity for community members to learn about exacerbations, treatments and comorbid issues as well as to ask an expert questions surrounding issues with chronic lung conditions. Click here to learn more about this event, including how you can register to participate for free.

If you missed the first Town Hall teleconference (Bronchiectasis and NTM 101) with Dr. Kevin Winthrop, the recording is now available on BronchandNTM360social. Click here to access it.

Not a member of BronchandNTM360social yet? BronchandNTM360social is an online community for individuals affected by Bronchiectasis and/or NTM, including patients, family members, caregivers, physicians and other healthcare providers. It serves as an online home for community members and provides a comfortable venue to share thoughts and ideas, ask questions, start discussions, read and comment on blogs, and communicate with peers, thought leaders and community managers. We encourage you to sign up today!

Lastly, if you have a lung infection due to NTM (Nontuberculous Mycobacteria) such as MAC (Mycobacterium Avium Complex) – Ashfield Healthcare would like to speak to you! Ashfield Healthcare will be conducting 60-minute telephone interviews as part of an important market research initiative to understand your condition and how you take your treatments. If you are interested in participating or learning more about this opportunity, please contact David Pascual at David@just-worldwide.com or 1 (609) 955-2128. If eligible for this market research, you can complete this interview from home and you will be compensated for your time following the discussion.

Questions? Email info@bronchiectasisandNTMinitiative.org.

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How can I join in on the call on March 6th. I would like to learn more about what Dr Aksamit has to share about this condition I have. Thanks, Barb

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@lindam272

And this yesterday – This is a town hall that you can participate in by phone:

Dear Community Members,

We are excited to announce our second Town Hall teleconference: A Dive into Bronchiectasis and NTM! This event will take place via teleconference on Monday, March 5, 2018 from 2pm to 3pm EST, with expert speaker Dr. Tim Aksamit from the Mayo Clinic. This is a unique opportunity for community members to learn about exacerbations, treatments and comorbid issues as well as to ask an expert questions surrounding issues with chronic lung conditions. Click here to learn more about this event, including how you can register to participate for free.

If you missed the first Town Hall teleconference (Bronchiectasis and NTM 101) with Dr. Kevin Winthrop, the recording is now available on BronchandNTM360social. Click here to access it.

Not a member of BronchandNTM360social yet? BronchandNTM360social is an online community for individuals affected by Bronchiectasis and/or NTM, including patients, family members, caregivers, physicians and other healthcare providers. It serves as an online home for community members and provides a comfortable venue to share thoughts and ideas, ask questions, start discussions, read and comment on blogs, and communicate with peers, thought leaders and community managers. We encourage you to sign up today!

Lastly, if you have a lung infection due to NTM (Nontuberculous Mycobacteria) such as MAC (Mycobacterium Avium Complex) – Ashfield Healthcare would like to speak to you! Ashfield Healthcare will be conducting 60-minute telephone interviews as part of an important market research initiative to understand your condition and how you take your treatments. If you are interested in participating or learning more about this opportunity, please contact David Pascual at David@just-worldwide.com or 1 (609) 955-2128. If eligible for this market research, you can complete this interview from home and you will be compensated for your time following the discussion.

Questions? Email info@bronchiectasisandNTMinitiative.org.

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If you go to this page, there is a link for "click here" which allows you to register for the event. https://www.bronchiectasisandntminitiative.org/BronchandNTM360social/Community-Discussions/Blog/Article/66

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@lindam272

And this yesterday – This is a town hall that you can participate in by phone:

Dear Community Members,

We are excited to announce our second Town Hall teleconference: A Dive into Bronchiectasis and NTM! This event will take place via teleconference on Monday, March 5, 2018 from 2pm to 3pm EST, with expert speaker Dr. Tim Aksamit from the Mayo Clinic. This is a unique opportunity for community members to learn about exacerbations, treatments and comorbid issues as well as to ask an expert questions surrounding issues with chronic lung conditions. Click here to learn more about this event, including how you can register to participate for free.

If you missed the first Town Hall teleconference (Bronchiectasis and NTM 101) with Dr. Kevin Winthrop, the recording is now available on BronchandNTM360social. Click here to access it.

Not a member of BronchandNTM360social yet? BronchandNTM360social is an online community for individuals affected by Bronchiectasis and/or NTM, including patients, family members, caregivers, physicians and other healthcare providers. It serves as an online home for community members and provides a comfortable venue to share thoughts and ideas, ask questions, start discussions, read and comment on blogs, and communicate with peers, thought leaders and community managers. We encourage you to sign up today!

Lastly, if you have a lung infection due to NTM (Nontuberculous Mycobacteria) such as MAC (Mycobacterium Avium Complex) – Ashfield Healthcare would like to speak to you! Ashfield Healthcare will be conducting 60-minute telephone interviews as part of an important market research initiative to understand your condition and how you take your treatments. If you are interested in participating or learning more about this opportunity, please contact David Pascual at David@just-worldwide.com or 1 (609) 955-2128. If eligible for this market research, you can complete this interview from home and you will be compensated for your time following the discussion.

Questions? Email info@bronchiectasisandNTMinitiative.org.

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@lindam272 Hi Linda, a suggestion to post this as a separate topic? I almost missed it but decided to check in on this thread. I imagine most people won't be doing that. Thanks! Jen

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@lindam272

And this yesterday – This is a town hall that you can participate in by phone:

Dear Community Members,

We are excited to announce our second Town Hall teleconference: A Dive into Bronchiectasis and NTM! This event will take place via teleconference on Monday, March 5, 2018 from 2pm to 3pm EST, with expert speaker Dr. Tim Aksamit from the Mayo Clinic. This is a unique opportunity for community members to learn about exacerbations, treatments and comorbid issues as well as to ask an expert questions surrounding issues with chronic lung conditions. Click here to learn more about this event, including how you can register to participate for free.

If you missed the first Town Hall teleconference (Bronchiectasis and NTM 101) with Dr. Kevin Winthrop, the recording is now available on BronchandNTM360social. Click here to access it.

Not a member of BronchandNTM360social yet? BronchandNTM360social is an online community for individuals affected by Bronchiectasis and/or NTM, including patients, family members, caregivers, physicians and other healthcare providers. It serves as an online home for community members and provides a comfortable venue to share thoughts and ideas, ask questions, start discussions, read and comment on blogs, and communicate with peers, thought leaders and community managers. We encourage you to sign up today!

Lastly, if you have a lung infection due to NTM (Nontuberculous Mycobacteria) such as MAC (Mycobacterium Avium Complex) – Ashfield Healthcare would like to speak to you! Ashfield Healthcare will be conducting 60-minute telephone interviews as part of an important market research initiative to understand your condition and how you take your treatments. If you are interested in participating or learning more about this opportunity, please contact David Pascual at David@just-worldwide.com or 1 (609) 955-2128. If eligible for this market research, you can complete this interview from home and you will be compensated for your time following the discussion.

Questions? Email info@bronchiectasisandNTMinitiative.org.

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@barbjh click on the link that @joan912 provided.

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@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.

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@Nanette, Thank you Nan. It is still an ongoing saga for me…….

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@boomerexpert

FYI all. Just received notice from NTMandBronch360 (to which I subscribed a while back) as follows:
If you have a lung infection due to NTM (Nontuberculous Mycobacteria) such as MAC (Mycobacterium Avium Complex) – Ashfield Healthcare would like to speak to you! Ashfield Healthcare will be conducting 60-minute telephone interviews as part of an important market research initiative to understand your condition and how you take your treatments.
If you are interested in participating or learning more about this opportunity, please contact David Pascual at David@just-worldwide.com or 1-(609) 955-2128. If eligible for this market research, you can complete this interview from home and you will be compensated for your time following the discussion.

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@nannette, I am wishing you luck on your CT scan. Please keep us informed. -hugs!

Liked by tdrell

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@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.

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@windy935 Mariah……did your Dr do sputum cultures…..did you get a baseline vision test done prior to starting on meds? Tdrell

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