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 | Feb 22, 2018
In reply to @lindam272 "And this yesterday - This is a town hall that you can participate in by phone:..." + (show)
@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.

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Feb 27, 2018
In reply to @windy935 "My name is Mariah and I have lived with myobacterium avian and bronchiectasis since 2011--and probably..." + (show)
@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.......

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Feb 27, 2018
In reply to @boomerexpert "FYI all. Just received notice from NTMandBronch360 (to which I subscribed a while back) as follows:..." + (show)
@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!

REPLY
tdrell | @tdrell | Feb 27, 2018
In reply to @windy935 "My name is Mariah and I have lived with myobacterium avian and bronchiectasis since 2011--and probably..." + (show)
@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

REPLY
tdrell | @tdrell | Feb 27, 2018
In reply to @windy935 "My name is Mariah and I have lived with myobacterium avian and bronchiectasis since 2011--and probably..." + (show)
@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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@windwalker .....sorry to miss your question re flare ups of my myofaschial ...sp...pain dysfunction.....yes....when I phone banked and use my cell phone against ear ....awful pain within hours...and if I chew gum...tdrell

REPLY
killelea | @killelea | Mar 5, 2018

Hello, I'm new to all of this( both the illness and the internet group). I was diagnosed with MAC 6 months ago. I'll go for the 6 month checkup soon. I'm 74 and female. former smoker. I guess I have the profile. I'd welcome any good sources for study or any good suggestions about how to fight it. Thank you.

REPLY
18 replies
liliane | @liliane | Mar 5, 2018
In reply to @killelea "Hello, I'm new to all of this( both the illness and the internet group). I was..." + (show)
@killelea

Hello, I'm new to all of this( both the illness and the internet group). I was diagnosed with MAC 6 months ago. I'll go for the 6 month checkup soon. I'm 74 and female. former smoker. I guess I have the profile. I'd welcome any good sources for study or any good suggestions about how to fight it. Thank you.

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Hello @killelea ! Welcome to this very helpful group. I too was diagnosed with MAC as well as bronchioectasis 2 years ago. For 14 months I followed the prescribed antibiotic regimen.Three potent doses of antibiotics taken 3 times a week. I am happy to report that my last bronchoscopy and cultures all came back negative. Aside from the sequelae, which is bronchioectasis, I am able to lead a normal and active life.
Follow your prescribed treatment very carefully and tweak how you take the antibiotics to minimize your side effects. I found that by dividing the doses throughout the day and not taking the meds prior to going to bed, I was able to avoid the reflux and stomach upset, for example. But each person is different and you will find what works for you. Speak to your physician about probiotics. I was placed on VSL#3 and it was wonderful for maintaining my intestinal flora alive and well during the long haul.
Best of luck to you. There is light at the end of the tunnel!
Liliane DDS

REPLY
irene5 Irene Estes | @irene5 | Mar 5, 2018
In reply to @killelea "Hello, I'm new to all of this( both the illness and the internet group). I was..." + (show)
@killelea

Hello, I'm new to all of this( both the illness and the internet group). I was diagnosed with MAC 6 months ago. I'll go for the 6 month checkup soon. I'm 74 and female. former smoker. I guess I have the profile. I'd welcome any good sources for study or any good suggestions about how to fight it. Thank you.

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You can fight it by being proactive and advocating for yourself. You also need to eat a well balanced and nutritional diet. You need to exercise even if it is difficult for you. Start slowly. You know your body. Listen to it and it’s infinite wisdom! Make sure you have a good infectious disease doctor. Go back and reread all the posts on this site, especially those from our former mentor Katherine who has sinced passed and those from our new mentor @windwalker. You will have to make your own informed decision about your treatment. Good luck.

REPLY
Jane S. Brown | @macjane | Mar 5, 2018
In reply to @killelea "Hello, I'm new to all of this( both the illness and the internet group). I was..." + (show)
@killelea

Hello, I'm new to all of this( both the illness and the internet group). I was diagnosed with MAC 6 months ago. I'll go for the 6 month checkup soon. I'm 74 and female. former smoker. I guess I have the profile. I'd welcome any good sources for study or any good suggestions about how to fight it. Thank you.

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Only problem can be serious allergy to most potent medicines.

REPLY
Jane S. Brown | @macjane | Mar 5, 2018
In reply to @killelea "Hello, I'm new to all of this( both the illness and the internet group). I was..." + (show)
@killelea

Hello, I'm new to all of this( both the illness and the internet group). I was diagnosed with MAC 6 months ago. I'll go for the 6 month checkup soon. I'm 74 and female. former smoker. I guess I have the profile. I'd welcome any good sources for study or any good suggestions about how to fight it. Thank you.

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I read everything and so appreciate all the advice. Will read and listen. Very hard to know answers to so many questions. I will be talking to Mayo Clinic on Wednesday.

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