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.

cila | @cila | Sep 11, 2020
In reply to @nick52 "Jennifer @meagan123 It is true that Ontario and Quebec are the worst province in Canada but..." + (show)
@nick52

Jennifer @meagan123 It is true that Ontario and Quebec are the worst province in Canada but also the most population. Saddly travellers and too many people didn’t listen to the government advice to stay home! Stay Safe ! The only way to win he war against the virus! They just ignore the order until the gov. Implemented fine to be paid! It was a bit too late then. Oh! Well we can only control ourself not the others so stay safe! I buy my ClearLung extra strenght in US at The Vitamine Store is the cheapest 39$/ 120 capsule. They have it on Ebay but very expensive. The company is Ridgecrest and the product is Clearlung EXTRA STRENGHT Very important. Try THE NATIONAL NUTRITION.ca in Ontario. They do mail even during the pandemic here are there number 1-800-526-9772. I saw that they have a product called flush but I don’t about that one but ClearLung Extra Strenght is a must for Bronchiectasis lung. I maintain my lungs with this and having a very normal life. I never wanted to take the cocktail and my infectiologue never recommended it! Hope this will help! You can check any natural store that sells vitamine they may have some!
Love Nicole

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Nick, i got me a clear lungs extra strength. how many you take a day? they are expensive and how can you if they work? I have MAC for 3 yrs now. I would like to take other medication. Are you better now? Thanks Cila.

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1 reply
Beth Kiefer | @mrf5629 | Sep 11, 2020

Thx Nic. I do have to worry about my liver because I am alpha anti-trypsin deficient (carrier MZ only thank goodness so not as deficient as some but my doctor thinks this is why I developed Bronchiectasis. It also negatively effects the liver.

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1 reply
nick52 | @nick52 | Sep 11, 2020
In reply to @cila "Nick, i got me a clear lungs extra strength. how many you take a day? they..." + (show)
@cila

Nick, i got me a clear lungs extra strength. how many you take a day? they are expensive and how can you if they work? I have MAC for 3 yrs now. I would like to take other medication. Are you better now? Thanks Cila.

Jump to this post

Cola I had great experience with Clear Lungs. At the beginning I did it twice a day 2 caps. I had hardly mucus after but nowI take as needed. I haven’t had any bad experience breathing since. I always have some to make sure I decongestion my lung right away. I stop when my breathing is good no wheezing. I have bronchiectasis and they found a MAC in the la culture after a bronchoscope.I haven’t had any test or other treatment since. It’s been 2 years. I thank God every day. If your symptoms are bad you can follow the directions on the bottle. You must have a good healthy diet no fried food. Once an a while I do but I treat myself with Milk Thistle, Colustrum, and clear lungs when I wheeze a bit because of the mucus forming. I stay away from citrus fruits, all sweet drinks like cola...Etc, citrus juice and dairy products, It isn’t good for acid reflux and gives me mucus when I cheat.i decided not to cheat too often lol ! Hope this help! Do not hesitate if you have any other questions! Nic

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1 reply
nick52 | @nick52 | Sep 11, 2020
In reply to @mrf5629 "Thx Nic. I do have to worry about my liver because I am alpha anti-trypsin deficient..." + (show)
@mrf5629

Thx Nic. I do have to worry about my liver because I am alpha anti-trypsin deficient (carrier MZ only thank goodness so not as deficient as some but my doctor thinks this is why I developed Bronchiectasis. It also negatively effects the liver.

Jump to this post

That is what my doctor said also It is related but I decided to help cleaning my liver and my family doctor then gave me Milk Thistle it might help. If your liver is congestion it leave too much bile in your stomach and the acid goes to your lungs according to him. Milk Thistle is a flower so it isn’t dangerous. Do some research on it.

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1 reply
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Sep 11, 2020
In reply to @nick52 "That is what my doctor said also It is related but I decided to help cleaning..." + (show)
@nick52

That is what my doctor said also It is related but I decided to help cleaning my liver and my family doctor then gave me Milk Thistle it might help. If your liver is congestion it leave too much bile in your stomach and the acid goes to your lungs according to him. Milk Thistle is a flower so it isn’t dangerous. Do some research on it.

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OMG! Nick52! I have been thinking about you and wondering how the heck you have been. What is going on with you girl??!

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Sep 11, 2020
In reply to @sueinmn "I do love it. Yesterday I thought I might need an albuterol neb due to shortness..." + (show)
@sueinmn

I do love it. Yesterday I thought I might need an albuterol neb due to shortness of breath, but after 2 days of the tea I'm back to being fine without extra meds.
Sue

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That is good news. I can forfeit meds too by drinking the tea and get relief.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Sep 11, 2020
In reply to @kathyhg "How may cups do you drink a day. To find it helpful?" + (show)
@kathyhg

How may cups do you drink a day. To find it helpful?

Jump to this post

Kathy, I would drink one cup a day, two if having a very bad day. I would drink it when my chest felt tight or I was coughing excessively.

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2 replies
Granny | @goddard | Sep 11, 2020
In reply to @nick52 "Cola I had great experience with Clear Lungs. At the beginning I did it twice a..." + (show)
@nick52

Cola I had great experience with Clear Lungs. At the beginning I did it twice a day 2 caps. I had hardly mucus after but nowI take as needed. I haven’t had any bad experience breathing since. I always have some to make sure I decongestion my lung right away. I stop when my breathing is good no wheezing. I have bronchiectasis and they found a MAC in the la culture after a bronchoscope.I haven’t had any test or other treatment since. It’s been 2 years. I thank God every day. If your symptoms are bad you can follow the directions on the bottle. You must have a good healthy diet no fried food. Once an a while I do but I treat myself with Milk Thistle, Colustrum, and clear lungs when I wheeze a bit because of the mucus forming. I stay away from citrus fruits, all sweet drinks like cola...Etc, citrus juice and dairy products, It isn’t good for acid reflux and gives me mucus when I cheat.i decided not to cheat too often lol ! Hope this help! Do not hesitate if you have any other questions! Nic

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Unfortunately the dong quai in Clear Lungs has estrogenic properties, so those of us with estrogen positive tumors Are advised to avoid. A wonderful website re contraindications and side effects of herbs and botanicals is contained in MSKCC.org , Website for Memorial Sloan Kettering Cancer Center. They have All About Herbs App, very informative.

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2 replies
kathyhg | @kathyhg | Sep 12, 2020
In reply to @windwalker "Kathy, I would drink one cup a day, two if having a very bad day. I..." + (show)
@windwalker

Kathy, I would drink one cup a day, two if having a very bad day. I would drink it when my chest felt tight or I was coughing excessively.

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Thanks! I’ll try it

REPLY
alleycatkate | @alleycatkate | Sep 12, 2020
In reply to @goddard "Unfortunately the dong quai in Clear Lungs has estrogenic properties, so those of us with estrogen..." + (show)
@goddard

Unfortunately the dong quai in Clear Lungs has estrogenic properties, so those of us with estrogen positive tumors Are advised to avoid. A wonderful website re contraindications and side effects of herbs and botanicals is contained in MSKCC.org , Website for Memorial Sloan Kettering Cancer Center. They have All About Herbs App, very informative.

Jump to this post

@clpc Thanks for that great botanical site!! Kate

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