(MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS

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:

  1. Document Title Example:  Mayo Clinic Connect MAI/MAC Information
  2. 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
  3. 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!

KateMN

@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.

@windwalker

@sueinmn Hello Sue. As the mac gets beaten down; your weight should come back along with your appetite. Have you discussed the weight loss with your dr?

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Thanks Terri, I had my last sputum test Christmas week, results are not back yet as it was sent to our state health dept by the clinic, and they are slow to report. My doc is able to check interim results on line, and does so very frequently. Last time I had pseudomonas, he called me after 7 days, but when it was finally negative, it was 3 weeks to confirm…Approaching that so I expect to hear from him shortly. Because I am small, he felt in December that my weight was "still within normal range", but I have lost 20 pounds in 16 months, and definitely feel puny, plus even with effort I am not maintaining physical strength. If this is my new normal, I don't like it. Seeing my regular doc this week, and will see what she thinks about the loss.

@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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@yaggi01 I don’t know which part of the Tennessee line of Kentucky you are near, but when we lived in Tennessee (Clarksville) I was seen at Vanderbilt and thought the ID doctor I saw there was thorough, knowledgeable, and kind. I’m sure the Mayo in Jacksonville is exemplary as well. (irene5)

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

@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.

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@hydrang3a I agree with you about bronchiectasis and antibiotics. I'm an example of living a normal life with bronchiectasis but without antibiotics. It is true that, since bronchiectasis has no cure, those of us who have it will always be vulnerable to being infected with MAC. But I don't think antibiotics can be safely used long-term simply to prevent MAC from happening. And I don't believe the doctors would even be willing to prescribe antibiotics if you are not yet infected with MAC or your infection is not progressing enough to affect your daily living. There are just too many cons with using antibiotics long term.

Liked by heathert

@sueinmn

I am in month 6 on the big 3 – I find the overall fatigue has improved, but I still have to modify my activities. Now if I try to do too much in a day, or on successive days, I hit a "wall" of fatigue that just stops me in my tracks. Still trying to figure out the weight loss piece, I have no appetite, and most days wouldn't remember to eat if my husband didn't remind me. Even with whole milk or cream blended into my coffee concentrate, smoothies, cheese, yogurt and other high calorie snacks, I am down to 106 and still losing a pound a month.

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@sueinmn Thanks so much for replying Sue, your advice was very helpful to me. I hope you can get your weight under control very soon. Yes agree with others — have read in research literature that when the fight against the bugs succeeds, symptoms like the weight loss will slow or stop. My weight loss has been much smaller so far, but when I had a bad illness when young a specialist put me on glasses of sweetened condensed milk, or powdered milk with sugar, every day to help avoid losing too much weight. Healthier versions of this might use full cream milk topped up with cream and sweetened. And have plenty of honey every day. (Honey was historically used for lessening TB symptoms. You could also add a good Probiotic powder to the milk – that can help reduce the gut effects of taking antibiotics if you have it 12 hours before or after them).

@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

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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

@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

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@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.

@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

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@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

@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

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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!

@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.

@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.

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@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.

@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.

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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.

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

@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.

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