(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.

smileygirl47 | @smileygirl47 | Mar 19, 2022

In reply to @tdrell "smileygirl47....l recall reading about the incidence of people who had had open heart being afflicted months..." + (show)

Thanks for the info, Terri. I will check out the article. My infection was discovered 28 months after the open heart surgery. So far the infection site appears to be contained in my chest wall. It is not in my blood; however, the cultures are still growing regarding my bones and muscles. So far, no damage has appeared in my heart or lungs. I'm alive, very upset about this whole scenario, fighting with everything I have to get my life back again.

tdrell | @tdrell | Mar 19, 2022

In reply to @smileygirl47 "Thanks for the info, Terri. I will check out the article. My infection was discovered 28..." + (show)

Am thinking that after all these years dealing with folks who have had the
aftermath of this issues, there will be set “protocols”keep me posted if
you have time

gemsplace | @gemsplace | Apr 2, 2022

Just starting the big three and wonder which way to do the dosages. All at once at night, or spread out through the day?

Amanda Roe | @amandajro | Apr 2, 2022

In reply to @gemsplace "Just starting the big three and wonder which way to do the dosages. All at once..." + (show)

Hello @gemsplace and welcome to Mayo Clinic Connect. There is quite an active discussion for those with MAC/MAI so wanted to move your post there to help you more easily connect with members like you. Your post is now here: https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/?pg=756#chv4-comment-stream-header

That said, @heathert has shared about her experience with taking the big 3 and thought she may be able to come back in and connect with you as well. @america and @irene5 have has also shared about their experiences with the big 3 and may be able to share more with you.

How have you decided to start?

mattiepepper | @mattiepepper | Jun 19, 2022

I take 2 capsules of Clear Lung extra Strength 3 times a day. I have for several years. Does anyone know if there any side effects? I am not aware of any. Thank you

Sue, Volunteer Mentor | @sueinmn | Jun 19, 2022

In reply to @mattiepepper "I take 2 capsules of Clear Lung extra Strength 3 times a day. I have for..." + (show)

I also am not aware of any, however it contains a number of herbs that could each potentially have side effects or interfere with other medicines.
According to the manufacturer, the capsules contain: ClearLungs Extra Strength Herbal Blend (750 mg/cap):Dong Quai root, Ophiopogon root, Poria fungal body, Chinese Asparagus root, Chinese Skullcap root, Gardenia fruit, Luo Han Guo fruit, Platycodon root, Tangerine mature peel, White Mulberry root bark, Zhejiang Fritillary bulb, Schisandra fruit, Chinese Licorice root, Availablend Bioavailability Complex Sichuan Pepper, Ginger root, Black Pepper, Habanero Pepper, Vegetable capsule, microcrystalline cellulose, silica.

The quantities do not seem to be specified (which if often typical in Chinese herbal medicines.)

When I am recommended an herbal medicine, I look up each ingredient and its potential side effects, then I look for any interaction with each medication I take. For example, here is what WebMD has to say about long term use of dong quai, which is just one ingredient: "Taking dong quai in higher doses for more than 6 months is possibly unsafe. Dong quai contains chemicals that might cause cancer." (https://www.webmd.com/vitamins/ai/ingredientmono-936/dong-quai)

Just something to consider when using any supplement or drug ...
Sue

mattiepepper | @mattiepepper | Jun 19, 2022

In reply to @sueinmn "I also am not aware of any, however it contains a number of herbs that could..." + (show)

Thank you for your thoughtful reply.

kathyhg | @kathyhg | Jun 20, 2022

In reply to @mattiepepper "I take 2 capsules of Clear Lung extra Strength 3 times a day. I have for..." + (show)

What is the purpose of the Clear Lung? Is it helpful?

lweirdo1 | @lweirdo1 | Jun 20, 2022

Not sure this is still going on. I am a MAC fighter looking for any help or ideas you can pass along. On three meds three times weekly. It's a tough fight!

mattiepepper | @mattiepepper | Jun 20, 2022

In reply to @kathyhg "What is the purpose of the Clear Lung? Is it helpful?" + (show)

Sorry, not sure if your question is directed at me? If it is I was diagnosed with IPF in 2000. I was given a life expectancy of 3 to 6 months. I don't say, nor advocate that Clear Lung is what changed my life at all. However, it certainly hasn't hurt. I do notice when I don't take the supplement I experience shortness of breath. The comments from the 'mentor' was helpful and if you are taking the supplement and/or considering I'd encourage you to take her advice and talk with you primary or specialist.

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