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(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.

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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)
Profile picture for Beth Kiefer @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.

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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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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)
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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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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)
Profile picture for Sue, Volunteer Mentor @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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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)
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How may cups do you drink a day. To find it helpful?

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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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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)
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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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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)
Profile picture for Terri Martin, Volunteer Mentor @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

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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)
Profile picture for Granny @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.

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@clpc Thanks for that great botanical site!! Kate

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Mentor
Sue, Volunteer Mentor | @sueinmn | Sep 12, 2020
In reply to @kathyhg "How may cups do you drink a day. To find it helpful?" + (show)
Profile picture for kathyhg @kathyhg

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

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Usually two, sometimes just one. I find it helps loosening mucus and with shortness of breath. My husband drinks it too, but adds a bit of honey.
Sue

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Mentor
Sue, Volunteer Mentor | @sueinmn | Sep 12, 2020
In reply to @mrf5629 "Thank you Sue. Which do you think works better? The licorice root or the Breathe Easy?" + (show)
Profile picture for Beth Kiefer @mrf5629

Thank you Sue. Which do you think works better? The licorice root or the Breathe Easy?

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I don't use licorice root because the tea works for me & I get a much lower dose of licorice, so less concern about BP.
Sue

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

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clpc, Thanks for posting. It appears dong quai will increase estrogenic effects. Any drug that does that will decrease testosterone as well. It was hard for me to locate that info on the MSKCC.org site. Here is a direct link: https://www.mskcc.org/cancer-care/integrative-medicine/herbs/dong-quai Bill

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