(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.

Hi all, Today's member spotlight features @irene5, a member well known to members of the MAC & Bronchiectasis group. Read her interview with fellow member @rosemarya to learn more about Irene: how she stumbled upon Mayo Clinic Connect, her tribute to @katemn and appreciation for everything she's learned about living with MAC from all of you.

– Navigating unknown territory with others: Meet @irene5 https://connect.mayoclinic.org/page/about-connect/newsfeed-post/navigating-unknown-territory-with-others-meet-irene5/

+Follow the About Connect page to see all the Member Spotlights and be notified when new spotlights are published: https://connect.mayoclinic.org/page/about-connect/tab/newsfeed/

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@sueinmn

Beth - In my area it is available in the tea aisle at Walmart, of all places. The companion, if you are on antibiotics & suffering nausea, is their ginger tea. I alternated between the 2 for 2 years! Finally got cool enough to start brewing Breathe Easy for my afternoon break - just put some in my "Grandma Bag" to take to my daughter's, where I provide kid wrangling while she works from home.
Sue

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

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@nannette

@mrf5629 Beth, yes, I take it in capsule form and bought it a vitamin shoppe right near my doctor's office. I, too, have a had a terrible cough for two and a half years and I, also, decided to take the problem into my own hands because NEITHER of the two pulmonologists seemed to care about my cough at all. I got it with the 2018 flu that almost killed me. So I decided to do what Daniel Pecaut did in his book, Beating Bronchiectasis, gathered up my own team and tried to do most of the things that he did in his book but I didn't do all of them. I did go to an acupuncturist for a year to see if that would help with the cough. It didn't really but it might have helped in other ways. I then found a functional medicine doctor which I now wish I had done years ago. They're doctors, generally, but have added integrative, and alternative solutions to problems. They look at the WHOLE patient not just the symptoms. Anyway, went to this wonderful doctor and he started with allergies and it turns out I'm allergic to everything....trees, grasses and weeds. He was right in that he thought this might be an exacerbation of sorts to the cough. So I've been giving myself allergy shots for a year now, as well as exercise five days a week for at least 30 minutes and am taking other supplements, too. And at my last CT scan which was a month ago (the first one in two years), the nurse practitioner looked at it (because I hardly ever see the real doctor who's the specialist for bronchiectasis) and said "there's no progression"! and then she said "whatever you're doing, keep doing it." So, not to knock the western medicine doctors but the past two years I've have been totally on my own trying to figure out this lung disease and coughing. I didn't succeed like Daniel Pecaut (yet) but I've had no progression and I consider that a win! I also do the saline solution just about everyday (that I learned from this forum. My local pulmonologist didn't really prescribe it but I made him find it and give me a prescription. And then I nebulize with glutathione almost every day (it's not cheap). My pulmonologist would not help me with that either. When I asked him about he kind of rolled his eyes and said "oh that's the stuff you get at the health food store". Well glutathione happens to be the single most important antioxidant in the human body says my functional medicine doctor and he gives me the vial of glutathione that I mix with my saline solution. So I can't pinpoint what exactly gave me 'no progression' but I think it's probably a combination of a lot of things just like Daniel Pecaut. And Daniel Pecaut had a Mayo doctor who stuck with him through his year of non-western medicine journey which I think is so admirable. And he looked at Picauts CT scan at the end of his year and gave him the results. Complete reversal. So I might not be there yet but I'm sure as hell working on it. Sorry to ramble but I wanted to let you know there's hope sometimes in all of this mess but you really and truly do have to be your own advocate. There is no question. Western medicine is a great thing but it's not the be all and end all. I think you have to mix in alternative and integrative therapies. And the cough is still not completely gone but I'm not giving up. One day I will get rid of it. Nan

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Thanks Nan. I checked on line and see this is available at the local Walgreen's which is good because they always have the buy one/get on for half price deal. 🙂

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@mrf5629

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

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Beth here is information about LICORICE

"Products containing licorice root extract can raise blood pressure, cause water retention and decrease potassium levels if consumed in excess." The 84-year-old man visited the emergency department for a high-blood pressure emergency, which was found to be induced by consuming homemade tea made from licorice root.

That's because licorice root and black licorice contain a compound called glycyrrhizin, which can cause the body's potassium levels to fall. This, in turn, can lead to health effects such as high blood pressure.

“Glycyrrhizin can cause potassium levels in the body to fall. When that happens, some people experience abnormal heart rhythms, as well as high blood pressure, edema (swelling), lethargy and congestive heart failure,” the site noted.

In this case you can buy “DGL / Deglycyrrhizinated Licorice root. This licorice does not have Glycyrrhizin and is safe. You can order it on the web on Organika.com.

Have you tried “Clear Lungs extra strenght” by Ridgecrest. It helps to clear the lungs to breath better. You can get it on the web write Ridgecrest Herbals clear lungs.

I buy my product at Vitamine shoppe or Nature’s food patch when I go in the states. You can also order from them Vitamine Shoppe.com/sale and many more. Most Natural store like Nature’s food patch also sell them and you get exactly what you need. In Walmart or drugs store you can get them but it will contain Glycyrrhizin . You can also get good guidance at thise places or by phone.
I hope this is helpful to you. Make sure you get tested for the virus also. We never know even if we are very careful. Good luck Nic

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@nick52

Beth here is information about LICORICE

"Products containing licorice root extract can raise blood pressure, cause water retention and decrease potassium levels if consumed in excess." The 84-year-old man visited the emergency department for a high-blood pressure emergency, which was found to be induced by consuming homemade tea made from licorice root.

That's because licorice root and black licorice contain a compound called glycyrrhizin, which can cause the body's potassium levels to fall. This, in turn, can lead to health effects such as high blood pressure.

“Glycyrrhizin can cause potassium levels in the body to fall. When that happens, some people experience abnormal heart rhythms, as well as high blood pressure, edema (swelling), lethargy and congestive heart failure,” the site noted.

In this case you can buy “DGL / Deglycyrrhizinated Licorice root. This licorice does not have Glycyrrhizin and is safe. You can order it on the web on Organika.com.

Have you tried “Clear Lungs extra strenght” by Ridgecrest. It helps to clear the lungs to breath better. You can get it on the web write Ridgecrest Herbals clear lungs.

I buy my product at Vitamine shoppe or Nature’s food patch when I go in the states. You can also order from them Vitamine Shoppe.com/sale and many more. Most Natural store like Nature’s food patch also sell them and you get exactly what you need. In Walmart or drugs store you can get them but it will contain Glycyrrhizin . You can also get good guidance at thise places or by phone.
I hope this is helpful to you. Make sure you get tested for the virus also. We never know even if we are very careful. Good luck Nic

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@nick52 I take 1 chewable table of DGL every day about 20 minutes before dinner to help with GERD. It really seems to work for me! It also helps with mucus production. https://www.healthline.com/health/digestive-health/dgl-for-acid-reflux#benefits

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@windwalker

Hi Sue! Don't you l
just love that Breathe Easy tea? I do!! It is always in my suitcase, I don't leave home without it.

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

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@nick52

Beth here is information about LICORICE

"Products containing licorice root extract can raise blood pressure, cause water retention and decrease potassium levels if consumed in excess." The 84-year-old man visited the emergency department for a high-blood pressure emergency, which was found to be induced by consuming homemade tea made from licorice root.

That's because licorice root and black licorice contain a compound called glycyrrhizin, which can cause the body's potassium levels to fall. This, in turn, can lead to health effects such as high blood pressure.

“Glycyrrhizin can cause potassium levels in the body to fall. When that happens, some people experience abnormal heart rhythms, as well as high blood pressure, edema (swelling), lethargy and congestive heart failure,” the site noted.

In this case you can buy “DGL / Deglycyrrhizinated Licorice root. This licorice does not have Glycyrrhizin and is safe. You can order it on the web on Organika.com.

Have you tried “Clear Lungs extra strenght” by Ridgecrest. It helps to clear the lungs to breath better. You can get it on the web write Ridgecrest Herbals clear lungs.

I buy my product at Vitamine shoppe or Nature’s food patch when I go in the states. You can also order from them Vitamine Shoppe.com/sale and many more. Most Natural store like Nature’s food patch also sell them and you get exactly what you need. In Walmart or drugs store you can get them but it will contain Glycyrrhizin . You can also get good guidance at thise places or by phone.
I hope this is helpful to you. Make sure you get tested for the virus also. We never know even if we are very careful. Good luck Nic

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Thx Nic! Good to know!

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@mrf5629

Thx Nic! Good to know!

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@mrf5629 Beth, you could also try Milk Thistle to help your liver for better Digestion! Nic!

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@lorifilipek

@nick52 I take 1 chewable table of DGL every day about 20 minutes before dinner to help with GERD. It really seems to work for me! It also helps with mucus production. https://www.healthline.com/health/digestive-health/dgl-for-acid-reflux#benefits

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Clear lung is also good and helps for Mucus! I do not have mucus anymore unless I eat fat food. Milk Thistle and clear lungs if necessary! Acid reflux ca be the cause of the MAC according to my specialist so it is the first thing to treat! Hope this help!

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