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 | Sep 24, 2017
In reply to @auntnanny "I'm not sure if this is the place to post but..... hopefully some will have answers..." + (show)
@auntnanny

I'm not sure if this is the place to post but..... hopefully some will have answers for me. I have bronchiectasis and went through a "flare" -- took clindamycin as that had been the last antibiotic used but this time, it really didn't seem to work. I contacted Mayo's and my pulmonologist was out. Someone filling in for him sent me Bacterim. I had a sputum test run and the results say pseudomonas. Bacterim is not on the list of recommended antibiotics for this. Does anyone have experience with pseudomonas and is it hard to be rid of it. I'll fax this report to Mayo's Monday morning and see where they want to go with it. Just questioning for others with experience with this bacteria. Thank you.....

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@nick52, I plan on making my own soon. You can get the 'seeds' (that is the culture medium) at a good health food store. The culture compounds on itself daily and you end up with an abundance of it. I Googled the process of making your own. It is super easy!

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Sep 24, 2017
In reply to @auntnanny "I'm not sure if this is the place to post but..... hopefully some will have answers..." + (show)
@auntnanny

I'm not sure if this is the place to post but..... hopefully some will have answers for me. I have bronchiectasis and went through a "flare" -- took clindamycin as that had been the last antibiotic used but this time, it really didn't seem to work. I contacted Mayo's and my pulmonologist was out. Someone filling in for him sent me Bacterim. I had a sputum test run and the results say pseudomonas. Bacterim is not on the list of recommended antibiotics for this. Does anyone have experience with pseudomonas and is it hard to be rid of it. I'll fax this report to Mayo's Monday morning and see where they want to go with it. Just questioning for others with experience with this bacteria. Thank you.....

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@heathert, I have never had kombucha, will have to try it.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Sep 24, 2017
In reply to @auntnanny "pfists Mayo's called me this morning and have called in cipro for me to pick up..." + (show)
@auntnanny

pfists Mayo's called me this morning and have called in cipro for me to pick up tomorrow. Guess we'll see how that goes. Thanks for the encouragement

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@auntnanny, Jan, the Cipro did the trick for me. I hope it works for you as well.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Sep 24, 2017
In reply to @auntnanny "I'm not sure if this is the place to post but..... hopefully some will have answers..." + (show)
@auntnanny

I'm not sure if this is the place to post but..... hopefully some will have answers for me. I have bronchiectasis and went through a "flare" -- took clindamycin as that had been the last antibiotic used but this time, it really didn't seem to work. I contacted Mayo's and my pulmonologist was out. Someone filling in for him sent me Bacterim. I had a sputum test run and the results say pseudomonas. Bacterim is not on the list of recommended antibiotics for this. Does anyone have experience with pseudomonas and is it hard to be rid of it. I'll fax this report to Mayo's Monday morning and see where they want to go with it. Just questioning for others with experience with this bacteria. Thank you.....

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@nick52, Jet.com sells Clear lungs, by California law, a warning was added to this product. You may want to go to that site and look to the bottom right. Tell me what you think. I know about most of the herbal ingriedients, and know they are safe and effective, but I plan to look up the chemical compounds. FOLKS, not all herbal or over the counter products are safe at all times; they can combine badly with medications you are already taking for example. Always check with your physician before taking suppliments.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Sep 24, 2017

@nick52, Vitaminlife.com also sells Clear Lung, it too has the warning at the bottom.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Sep 24, 2017

@nick52, I looked up each individual ingredient in Clear Lungs, seems that the one ingredient, licorice, can be dangerous to many people with other underlying health issues. If more than three grams a day is used, it can lower potassium levels and cause high blood pressure. People with heart, liver, or kidney disease should not take suppliments with licorice. Also, people with diabetes should avoid it also, along with people who use corticosteroids; which is most patients with COPD. One needs to discuss this licorice ingredient with their doctor before use. Gosh, licorice! Who knew??

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38 replies
tdrell | @tdrell | Sep 24, 2017
In reply to @windwalker "@nick52, I looked up each individual ingredient in Clear Lungs, seems that the one ingredient, licorice,..." + (show)
@windwalker

@nick52, I looked up each individual ingredient in Clear Lungs, seems that the one ingredient, licorice, can be dangerous to many people with other underlying health issues. If more than three grams a day is used, it can lower potassium levels and cause high blood pressure. People with heart, liver, or kidney disease should not take suppliments with licorice. Also, people with diabetes should avoid it also, along with people who use corticosteroids; which is most patients with COPD. One needs to discuss this licorice ingredient with their doctor before use. Gosh, licorice! Who knew??

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Windwalker...I think too much black licorice affects the heart rate. Tdrell

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Sep 24, 2017
In reply to @windwalker "@nick52, I looked up each individual ingredient in Clear Lungs, seems that the one ingredient, licorice,..." + (show)
@windwalker

@nick52, I looked up each individual ingredient in Clear Lungs, seems that the one ingredient, licorice, can be dangerous to many people with other underlying health issues. If more than three grams a day is used, it can lower potassium levels and cause high blood pressure. People with heart, liver, or kidney disease should not take suppliments with licorice. Also, people with diabetes should avoid it also, along with people who use corticosteroids; which is most patients with COPD. One needs to discuss this licorice ingredient with their doctor before use. Gosh, licorice! Who knew??

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@tdrell, it does. I now wonder if that isn't what was giving me SVT events? Chinese licorice root was the first ingredient in my tea at 300 mg. I was living on that tea for years. It did help open the airways though. There is a warning about people taking corticosteroids should not take licorice. Who knew that our benign little candy could be dangerous?

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Sep 24, 2017
In reply to @jkiemen "Check out this article about research into new treatment options https://academic.oup.com/jac/article/72/suppl_2/i1/4110809/Treatment-of-Mycobacterium-avium-intracellulare Jo Ann Kiemen" + (show)
@jkiemen

Check out this article about research into new treatment options
https://academic.oup.com/jac/article/72/suppl_2/i1/4110809/Treatment-of-Mycobacterium-avium-intracellulare
Jo Ann Kiemen

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@jkiemen, Hi Jo Ann. I read this article, looks hopeful. Plus, it gives access to many other published research articles. I saw where the first one on the list references list was Katherine's doctor Dr. Aksamit at the Rochester Mayo Clinic.

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tdrell | @tdrell | Sep 24, 2017

Windwalker....after I wrote the post I consulted "Dr Google" and was amazing at the effects from Licorice....blood pressure etc...wish I knew how to copy and paste it.tdrell

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