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.

janovr | @janovr | Jan 29, 2019
In reply to @nick52 "@sounder27 i would like to share my experience with you. Just like you my specialist for..." + (show)
@nick52

@sounder27 i would like to share my experience with you. Just like you my specialist for infection didn’t want to give me any of the big 3 cocktail because of the severe side effects. In order to prevent being sicker I used alternatives medicine. I discover what is call Clear Lungs to keep my lungs clean of infections. I started taking Probiotic to clear the infection and used ClearLungs extra strenght. I use RIDGECREST the blue cover. Make sure this is written on it. RELIEVE CONGESTION, SUPPORT FREE BREATHING, KEEP AIRWAYS OPEN, BALANCE MUCUS LEVELS. there is a verison with a red cover it doesn’t have the RELIEVE CONGESTION in it. You can call Ridgecrest for any concern or questions 1-800-242-4649. They are located in UT (usa) . You have a directions on the bottle and I use that if I feel I am really congested. I take some for prevention when I start a cold or have a dry cough or wheeze a bit or have a bit of mucus. I am very alert to my body so I use it when I feel I should. If I eat mucus forming food like ice cream or dairy product or pizza etc. I might take some if I hear a wheezing ( sorry I am french lol).
To me clearlungs is a savior. II am feeling very good! I have Bronchiectasis and had MAC. I am very stable but I also watch to have a balance diet. If you have stomach or a lot of mucus, I recommend you buy this book “Super Woman RX” by Tasneem Bhatia,MD. Follow her menu after you will identified the Powe type you are. Very interesting and it made a difference in my life. BUT THIS IS ME! I was diagnosed in 2010 with bronchiectasis after a severe pneumonia. MAC was discover few years later after a bronchoscopy. There is more alternative medicine outhere if you search for a solution. Good luck and keep searching for a solution. Do not hesitate if you have more questions. The Divine energy is always there to help! I will keep you in my prayor for your solution. Have a nice day Nicole

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@nick52

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janovr | @janovr | Jan 29, 2019

I say DITTO TO EVERYTHING @nick 52 stated. Clear Lung is THE BEST. I have told so many of this product I should have stock in the company. I cannot take the Big 3. Clear Lung has kept my lungs stable!

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1 reply
Flib | @flib | Jan 29, 2019
In reply to @janovr "I say DITTO TO EVERYTHING @nick 52 stated. Clear Lung is THE BEST. I have told..." + (show)
@janovr

I say DITTO TO EVERYTHING @nick 52 stated. Clear Lung is THE BEST. I have told so many of this product I should have stock in the company. I cannot take the Big 3. Clear Lung has kept my lungs stable!

Jump to this post

@janovr I've gotten serious about taking Clear Lung.I've taken it every four hours for two days and have barely stopped coughing. Honestly, sometimes so hard I think my head will roll across the floor. My question is this: is the intense coughing a sign that the herbs are working or an allergic rejection. Does there come a day when, if you stay on it,l the coughing dwindle, even goes away? I need a small dose of encouragement. Thanks,Flib

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1 reply
janovr | @janovr | Jan 29, 2019
In reply to @flib "@janovr I've gotten serious about taking Clear Lung.I've taken it every four hours for two days..." + (show)
@flib

@janovr I've gotten serious about taking Clear Lung.I've taken it every four hours for two days and have barely stopped coughing. Honestly, sometimes so hard I think my head will roll across the floor. My question is this: is the intense coughing a sign that the herbs are working or an allergic rejection. Does there come a day when, if you stay on it,l the coughing dwindle, even goes away? I need a small dose of encouragement. Thanks,Flib

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@flib

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2 replies
janovr | @janovr | Jan 29, 2019
In reply to @janovr "@flib" + (show)

I am so sorry your coughing is so extreme. Mine was not that severe but enough. I also HIGHLY recommend
Broncolin / with Propolis . It is an all natural Cough syrup. Order from Amazon.
Both cured my cough in less than 3 weeks. I rarely cough and just take a maintenance Clear Lung as needed if I feel a twinge starting to develop. Bless you! 🙏

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1 reply
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jan 30, 2019
In reply to @sounder27 "That’s just it. I haven’t gotten anywhere near to figuring this out. I am beginning to..." + (show)
@sounder27

That’s just it. I haven’t gotten anywhere near to figuring this out. I am beginning to get discouraged. There do not seem to be any pulmonary doctors in the Rhode Island area that have any solutions to offer for addressing the whole body. I went into hospital to have an ablation for the afib and the anesthesiologist would not proceed because of the mucous buildup from the Mac/bronchiectas and the length of time for intubation. I need to get rid of the mucous. Will the clear lung do that?

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@sounder27 Hi. I am sorry that you are struggling with your health issues. You may want to ask your dr to prescribe 7% inhable sodium chloride (salt water) that helps to clear up the mucous. Are you on antibiotics?

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1 reply
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jan 30, 2019
In reply to @janovr "@flib" + (show)

@flib, Girl! We just can't seem to get you to feeling better or rid of that cough. Have you been sputem tested for pseudomonas lately? That is usually the cause of constant coughing when you have bronchiectasis.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jan 30, 2019
In reply to @donut "They say that is what I have now after I have had MAC, taken the "Big..." + (show)
@donut

They say that is what I have now after I have had MAC, taken the "Big 3", had Lung Abscess in hospital for 20 days of multiple ivs.
now they way I have Mycobacteium Gordonae and pseudomonas aeruginosa infection again. They have me on Levequin again. Which is so painful to my joints.

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@donut It is probably the pseudomonad that has you so sick. There are other drugs that will knock it out besides levaquin. I cannot take levaquin due to stomach cramps. Ask your dr for an inhalable alternate for the levaquin. Ask about tobramycin. Or Cipro (comes pill form and inhable by a different name).

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sounder27 | @sounder27 | Jan 30, 2019
In reply to @windwalker "@sounder27 Hi. I am sorry that you are struggling with your health issues. You may want..." + (show)
@windwalker

@sounder27 Hi. I am sorry that you are struggling with your health issues. You may want to ask your dr to prescribe 7% inhable sodium chloride (salt water) that helps to clear up the mucous. Are you on antibiotics?

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No not on antibiotics. Because of afib the macrolides are out. Would a Himalayan salt inhaler be similar to the sodium chloride? Also what about doxycycline?

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1 reply
Flib | @flib | Jan 30, 2019
In reply to @janovr "I am so sorry your coughing is so extreme. Mine was not that severe but enough...." + (show)
@janovr

I am so sorry your coughing is so extreme. Mine was not that severe but enough. I also HIGHLY recommend
Broncolin / with Propolis . It is an all natural Cough syrup. Order from Amazon.
Both cured my cough in less than 3 weeks. I rarely cough and just take a maintenance Clear Lung as needed if I feel a twinge starting to develop. Bless you! 🙏

Jump to this post

@janovr My fourth day on Clear Lung, I believe. Very little coughing today and the most energy I've had in a long time. Thank you. This has given me some hope. I'm taking 2 pills every 4 hours. I tried to find the one with the relieve congestion on the label; couldn't. I'll call the company tomorrow. Feeling happy today! Flib

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