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!

++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
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.

pamelasc | @pamelasc1 | Jan 19, 2019
In reply to @pamelasc1 "Hello - I have a question about taking "Clear Lungs". I would like to try it...." + (show)
@pamelasc1

Hello - I have a question about taking "Clear Lungs". I would like to try it. Can anyone tell me the brand they take, if it is liquid or in pill form, how much, how often, etc. I was told there were several companies so I wanted to be sure to use the brand that some of you say has been quite effective. Thanks, Pam

Jump to this post

Can anyone give me some information on Clear Lungs, what brand, what form (liquid or pill) and if you use it only when sick, or all the time? Thanks, Pamela

REPLY
2 replies
egayle187 | @egayle187 | Jan 19, 2019
In reply to @pamelasc1 "Can anyone give me some information on Clear Lungs, what brand, what form (liquid or pill)..." + (show)
@pamelasc1

Can anyone give me some information on Clear Lungs, what brand, what form (liquid or pill) and if you use it only when sick, or all the time? Thanks, Pamela

Jump to this post

@pamelasc1 ...I use Dr. Tobias's Lung Meister which is in pill form and works for me. I've gotten off oxygen and haven't had an exacerbation in a whole year. I also sleep upright to get rid of acid reflux.

REPLY
nick52 | @nick52 | Jan 19, 2019
In reply to @pamelasc1 "Can anyone give me some information on Clear Lungs, what brand, what form (liquid or pill)..." + (show)
@pamelasc1

Can anyone give me some information on Clear Lungs, what brand, what form (liquid or pill) and if you use it only when sick, or all the time? Thanks, Pamela

Jump to this post

@pamelasc1

Dear Pamela,
It is a pleasure to give you information on 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 do not let my body take over. 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 for prevention if I hear a wheezing ( sorry I am french lol).
To me clearlungs is a savior. I have never taken the big 3 cocktail. I do not take any medication neither. I am feeling very good! I have Bronchiectasis and had MAC. I am very stable but I also watch to have a balance diet. I also take acidophilus non dairy and Milk Thistle I buy from HÜBNER. If I 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. If you have digestion or a lot of mucus or acid reflux. Very interesting and it made a difference in my life. BUT THIS IS ME! Acid reflux can be the cause of bronchiectasis.
Good luck and keep searching for a solution. The Divine energy is always there to help! I will keep you in my prayor for your solution. Have a nice day Nicole

REPLY
3 replies
janovr | @janovr | Jan 19, 2019
In reply to @nick52 "@pamelasc1 Dear Pamela, It is a pleasure to give you information on ClearLungs extra strenght. I..." + (show)
@nick52

@pamelasc1

Dear Pamela,
It is a pleasure to give you information on 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 do not let my body take over. 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 for prevention if I hear a wheezing ( sorry I am french lol).
To me clearlungs is a savior. I have never taken the big 3 cocktail. I do not take any medication neither. I am feeling very good! I have Bronchiectasis and had MAC. I am very stable but I also watch to have a balance diet. I also take acidophilus non dairy and Milk Thistle I buy from HÜBNER. If I 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. If you have digestion or a lot of mucus or acid reflux. Very interesting and it made a difference in my life. BUT THIS IS ME! Acid reflux can be the cause of bronchiectasis.
Good luck and keep searching for a solution. The Divine energy is always there to help! I will keep you in my prayor for your solution. Have a nice day Nicole

Jump to this post

I agree with everything stated above. I should have stock in Blue Label Clear Lung I have recommended it to so many people with lung issues.
GREAT STUFF!

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jan 19, 2019
In reply to @yaggi01 "@windwalker yes, I will be glad to let you know how it goes if I go..." + (show)
@yaggi01

@windwalker yes, I will be glad to let you know how it goes if I go that route. I live in Kentucky close to the Tennessee line. My pulmonary doc suggested he would refer me if I want a second look. I know you go to Mayo Clinic in Jacksonville and could you tell me who you see? Jacksonville is about 10 hours from us and would probably be the closest of all the clinics I see mentioned in this group. Thanks in advance for sharing the info.
Take care, Yaggi01

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@yaggi01Hi. I see Dr. Jack Leventhal at the Jacksonville Mayo.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jan 19, 2019
In reply to @hydrang3a "@windwalker ...I respectfully disagree with your statement “once you have Bronchiectasis there is no going off..." + (show)
@hydrang3a

@windwalker ...I respectfully disagree with your statement “once you have Bronchiectasis there is no going off antibiotics”. Although Bronchiectasis is a lifelong condition....many people with Bronchiectasis live healthy antibiotic free lives. Bronchiectasis is not an infection and if it is treated as one your body will become immune to the antibiotics and result in ineffective applications for later infections....... . In addition antibiotics wrack havoc with your entire body killing off important life giving cells in your eyes, ears, brain, and digestive system...virtually every organ in your body. It’s bad enough we have to endure the side effects of 18-24 month MAC antibiotic regimens.....we don’t need to suggest people take antibiotics indefinitely. Life long antibiotic use for those void of infections in the opinion of most physicians does more harm than good.

Jump to this post

@hydrang3a Hi there. I had removed my post that you and Ling did not agree with (life long antibiotics). I removed it seconds after I had posted it, but I guess it doesn't go away as fast as it posts. I was hoping that no one had seen it. The night I had posted it; I was not in my right mind. I was and still am 7 hours from home using ambien to sleep in a less than ideal situation. I am with my daughter who just lost her closest, dearest friend to suicide. My mind was not in a good place and I apologize to you all. Most of you will not need life long antibiotic treatment, but there are those that do. (Me included) There are mac patients out there that are not on antibiotics long enough. I hear from those types in my private messaging on a regular basis. Some are desparately and gravely ill; largely for not being medicated enough early on in their disease process. I am talking about those whose drs put them only on a two week to one month run of antibiotics. Anyway, I apologize again for running off track. It was a negative post that I regretted the instant I posted it.

REPLY
2 replies
america | @america | Jan 19, 2019
In reply to @windwalker "@hydrang3a Hi there. I had removed my post that you and Ling did not agree with..." + (show)
@windwalker

@hydrang3a Hi there. I had removed my post that you and Ling did not agree with (life long antibiotics). I removed it seconds after I had posted it, but I guess it doesn't go away as fast as it posts. I was hoping that no one had seen it. The night I had posted it; I was not in my right mind. I was and still am 7 hours from home using ambien to sleep in a less than ideal situation. I am with my daughter who just lost her closest, dearest friend to suicide. My mind was not in a good place and I apologize to you all. Most of you will not need life long antibiotic treatment, but there are those that do. (Me included) There are mac patients out there that are not on antibiotics long enough. I hear from those types in my private messaging on a regular basis. Some are desparately and gravely ill; largely for not being medicated enough early on in their disease process. I am talking about those whose drs put them only on a two week to one month run of antibiotics. Anyway, I apologize again for running off track. It was a negative post that I regretted the instant I posted it.

Jump to this post

Hi Terri! I have a question for you you. I had to get off the the Toby again. I love using the Toby because it’s directly to my lungs but my throat get so irritated that it hurt to swallow. Is there anything that I can use to coat my throat because of Sjogrens? And have you heard of Levaquin? Please I need some help! Thanks Rita.

REPLY
1 reply
heathert | @heathert | Jan 19, 2019

@windwalker, we all have those times Terri. The not with it times. You got on to it quick .

REPLY
ling123 | @ling123 | Jan 19, 2019

@windwalker no worries. We all know that in general antibiotics taken long-term do more harm than good. But there will always be cases where the conditions are dire enough nothing short of antibiotics works. Somehow I had a feeling as I read your posting that you might have meant to say something different. Now I know you did. Thanks for clarifying that.

REPLY
pamelasc | @pamelasc1 | Jan 20, 2019
In reply to @nick52 "@pamelasc1 Dear Pamela, It is a pleasure to give you information on ClearLungs extra strenght. I..." + (show)
@nick52

@pamelasc1

Dear Pamela,
It is a pleasure to give you information on 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 do not let my body take over. 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 for prevention if I hear a wheezing ( sorry I am french lol).
To me clearlungs is a savior. I have never taken the big 3 cocktail. I do not take any medication neither. I am feeling very good! I have Bronchiectasis and had MAC. I am very stable but I also watch to have a balance diet. I also take acidophilus non dairy and Milk Thistle I buy from HÜBNER. If I 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. If you have digestion or a lot of mucus or acid reflux. Very interesting and it made a difference in my life. BUT THIS IS ME! Acid reflux can be the cause of bronchiectasis.
Good luck and keep searching for a solution. The Divine energy is always there to help! I will keep you in my prayor for your solution. Have a nice day Nicole

Jump to this post

thanks so much Nicole for the information on Clear Lungs... is it possible to go down to one capsule a day if feeling well and do you take it always, whether sick or not? Also, can I put the powder in juice? I have a hard time with large capsules. Pamela

REPLY
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