(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.

nick52 | @nick52 | Sep 11, 2020

In reply to @mrf5629 "Thank you Sue. Which do you think works better? The licorice root or the Breathe Easy?" + (show)

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

lorifilipek | @lorifilipek | Sep 11, 2020

In reply to @nick52 "Beth here is information about LICORICE "Products containing licorice root extract can raise blood pressure, cause..." + (show)

@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

Sue, Volunteer Mentor | @sueinmn | Sep 11, 2020

In reply to @windwalker "Hi Sue! Don't you l just love that Breathe Easy tea? I do!! It is always..." + (show)

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

kathyhg | @kathyhg | Sep 11, 2020

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

Beth Kiefer | @mrf5629 | Sep 11, 2020

In reply to @nick52 "Beth here is information about LICORICE "Products containing licorice root extract can raise blood pressure, cause..." + (show)

Thx Nic! Good to know!

nick52 | @nick52 | Sep 11, 2020

In reply to @mrf5629 "Thx Nic! Good to know!" + (show)

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

nick52 | @nick52 | Sep 11, 2020

In reply to @lorifilipek "@nick52 I take 1 chewable table of DGL every day about 20 minutes before dinner to..." + (show)

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!

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)

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.

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.

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)

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