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.

lainey | @lainey | Mar 7, 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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Thank you! I will check into that.i do think the probiotics really are legit.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Mar 7, 2018
In reply to @killelea "thank you for your response - I'm just learning as much as I can and praying..." + (show)
@killelea

thank you for your response - I'm just learning as much as I can and praying about how to use all the good ideas.

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@macjane You know it!

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Mar 7, 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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@lilane, If any of us are on albuterol, that too can cause palpitations. My dr. switched me to levalbuterol instead. It is missing the ingredient that causes that.

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boomerexpert | @boomerexpert | Mar 7, 2018
In reply to @nick52 "@killelea Welcome to the group. A short version of my case. I was diagnosed with Bronchiectesis..." + (show)
@nick52

@killelea Welcome to the group. A short version of my case.
I was diagnosed with Bronchiectesis (2009)and MAC (2014) in along with some related esophagus issues called dysphagia (2017) . I have never taken the antibiotic cocktail. My main problem was the mucus. Since I’ve been diagnosed with asphagia in 2017 after a video deglutition xray I have to thicken my liquid because it was the caise of my bronchietasis. I am also taking Dr Ohirra professionnal probiotic and had a bronchoscopy in september 2017 to wash the lungs and I do not have the MAC anymore. Since I am thickening my liquid and take those strong probiotic I have no more mucus. If you take the cocktail you may want to keep your immune system strong by taking probiotic 4 hours before or after the antibiotic is ver safe not to interfere. Put your faith in God to guide you to the best solution to stay healthy!

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@lainey how about partially frozen jello that you can drink? Yum!

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liliane | @liliane | Mar 8, 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.

Jump to this post

Excellent suggestion. I will ask my physician about levalbuterol. Thank you!

REPLY
chinasmom | @chinasmom | Mar 11, 2018
In reply to @nick52 "@killelea Welcome to the group. A short version of my case. I was diagnosed with Bronchiectesis..." + (show)
@nick52

@killelea Welcome to the group. A short version of my case.
I was diagnosed with Bronchiectesis (2009)and MAC (2014) in along with some related esophagus issues called dysphagia (2017) . I have never taken the antibiotic cocktail. My main problem was the mucus. Since I’ve been diagnosed with asphagia in 2017 after a video deglutition xray I have to thicken my liquid because it was the caise of my bronchietasis. I am also taking Dr Ohirra professionnal probiotic and had a bronchoscopy in september 2017 to wash the lungs and I do not have the MAC anymore. Since I am thickening my liquid and take those strong probiotic I have no more mucus. If you take the cocktail you may want to keep your immune system strong by taking probiotic 4 hours before or after the antibiotic is ver safe not to interfere. Put your faith in God to guide you to the best solution to stay healthy!

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@lainey, hello to all in the group and I hope everyone is staying strong. I know it is very hard to drink something your body is rejecting. Our gag reflex is automatic and mine is extra sensitive. So I add some juice to my water to flavor it and using a straw might help to get past the gag reflex while drinking thickens liquids. Best of luck and good health!
Becky

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Jane S. Brown | @macjane | Mar 11, 2018
In reply to @nick52 "@killelea Welcome to the group. A short version of my case. I was diagnosed with Bronchiectesis..." + (show)
@nick52

@killelea Welcome to the group. A short version of my case.
I was diagnosed with Bronchiectesis (2009)and MAC (2014) in along with some related esophagus issues called dysphagia (2017) . I have never taken the antibiotic cocktail. My main problem was the mucus. Since I’ve been diagnosed with asphagia in 2017 after a video deglutition xray I have to thicken my liquid because it was the caise of my bronchietasis. I am also taking Dr Ohirra professionnal probiotic and had a bronchoscopy in september 2017 to wash the lungs and I do not have the MAC anymore. Since I am thickening my liquid and take those strong probiotic I have no more mucus. If you take the cocktail you may want to keep your immune system strong by taking probiotic 4 hours before or after the antibiotic is ver safe not to interfere. Put your faith in God to guide you to the best solution to stay healthy!

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Great idea. Jane

REPLY
nick52 | @nick52 | Mar 11, 2018
In reply to @nick52 "@killelea Welcome to the group. A short version of my case. I was diagnosed with Bronchiectesis..." + (show)
@nick52

@killelea Welcome to the group. A short version of my case.
I was diagnosed with Bronchiectesis (2009)and MAC (2014) in along with some related esophagus issues called dysphagia (2017) . I have never taken the antibiotic cocktail. My main problem was the mucus. Since I’ve been diagnosed with asphagia in 2017 after a video deglutition xray I have to thicken my liquid because it was the caise of my bronchietasis. I am also taking Dr Ohirra professionnal probiotic and had a bronchoscopy in september 2017 to wash the lungs and I do not have the MAC anymore. Since I am thickening my liquid and take those strong probiotic I have no more mucus. If you take the cocktail you may want to keep your immune system strong by taking probiotic 4 hours before or after the antibiotic is ver safe not to interfere. Put your faith in God to guide you to the best solution to stay healthy!

Jump to this post

@chinasmom how thick is your is it Nectar?

REPLY
nick52 | @nick52 | Mar 11, 2018
In reply to @nick52 "@killelea Welcome to the group. A short version of my case. I was diagnosed with Bronchiectesis..." + (show)
@nick52

@killelea Welcome to the group. A short version of my case.
I was diagnosed with Bronchiectesis (2009)and MAC (2014) in along with some related esophagus issues called dysphagia (2017) . I have never taken the antibiotic cocktail. My main problem was the mucus. Since I’ve been diagnosed with asphagia in 2017 after a video deglutition xray I have to thicken my liquid because it was the caise of my bronchietasis. I am also taking Dr Ohirra professionnal probiotic and had a bronchoscopy in september 2017 to wash the lungs and I do not have the MAC anymore. Since I am thickening my liquid and take those strong probiotic I have no more mucus. If you take the cocktail you may want to keep your immune system strong by taking probiotic 4 hours before or after the antibiotic is ver safe not to interfere. Put your faith in God to guide you to the best solution to stay healthy!

Jump to this post

@lainey what do you use to thicken your water?

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Jane S. Brown | @macjane | Mar 12, 2018

What happens if you are allergic to on the antibiotics? Five are mentioned but could someone name these?

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