(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.

@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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@pfists, I had read that about the 'dgc Licorice', problem is; the lables do not tell which kind of Chinese licorice they use. It just says 'Chinese Licorice Root'. @ling123, I know you are reading this and probably think we are over-reacting to it. I am not worried about it for myself because I use my tea in moderation. It is just that we have to be careful about what we promote.

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@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 you are right there, I really dont think my tea had enough in it to be a problem but others may be different.

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@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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I don't think there are two kinds of Chinese licorice roots. The article I cited says the Latin name for the Chinese licorice roots is Glycyrrhiza Uralensis and Latin name for the other types of licorice (produced outside of China) is Glycyrrhiza glabra. So I take it to mean that there is one kind of licorice grown in China. But I do agree with you wholeheartedly that moderation is the key word. And when we speak about the effects, positive or negative, we only speak about our own experience. Everybody needs to make their own decisions as to which route their should take on the path to healing and only use our experiences as reference not as guidelines.

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@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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@ling123, You are right Ling, I looked it up again. All I know is, I love it. Upon further reading on wikipedia; it states that it is also a wonderful detoxifier.

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@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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I agree with you Ling. everyone is different. When you try medical  herb you must find out if it is adequate for you with your medications and other health problem you have.  Also, you must be very sensitive and aware of your body to know if the herbs

makes a difference right at the first time you take it.  Only you can find the right dose for you even the doctor will tell you "find your own dose" to make it works. I am lucky because my doctor was the best cardiologist and he was the best of all here.  

He left the traditionnal medecine to treat patients with his natural approach.  I learned a lot from him in the 15 years but now he is retired.  He says the creator  make this earth with all the natural product to cure all disease.  He believed in the natural

healing but! But! If the medications was better he would prescribe it. i never had any from him but others did.  He says that traditional medecine cure one thing but create another problem with side effect to often.  That is the reason he started his own practice

because he needed to complied with the hospital rule. He was the best of the best here.  He said, ALL MUST BE TAKEN WITH MODERATION , even food! Since I have no other health problem then the MAC, I do not take any prescribed chemical med. so when i use herbs

it is always for the present problem like a cold or a virus or whatever.(rare). The only long term is primerose oil for my breast. (Cancer 2009) . For me it works and I  take it all year long but takes breaks here and there for few days.   I am very aware

of my body and I observe my body reactions how it reacts, heart beat, my breathing does it make a difference...etc.. everyone is different.

I like it when everyyone give ideas and what they have tried and  the discussions. I will share what is working for me but that doesn't mean it would work for you.  It might only be an option for you to considered.

Question?

Does anyone have had " broncospcopy"  mostly every 2 years to clean the lungs? That is  for those who had it for more than five years.

Nick

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@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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@nick52 Thanks for sharing your experience. Appreciated it.

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@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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Dear Windwalker,

Have you taken the antibiotics?

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@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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Dear pfists,

Thank you for sharing Dr Stephen's  book "herbal antibiotics " that sound interesting. I will google it and try to order the book. Thanks

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@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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Dear pfists, 

The books name is herbal antivirales or antibiotics?

Nick52

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@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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@nick52
Hello the book in reference is "Herbal Antibiotics" by Stephen Bruhner.
The book explains the treatment of all bacterias including mycobacteria.
I also have the antivial one but haven't really read it yet.
"Herbal Antibiotics" explains why antibiotics aren't working well anymore, why we have antibiotic resistant bacteria now and they are on the increase and what herbs work for all the different bacterias.
I purchased some of the herbs online at @woodland Essence. The ones I purchased were Cryptolepsis and Biden. Hope this helps!
Shari
@pfists

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