(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

@megan123

Hi Nick…I'm from Toronto…we aren't in great shape as well probably do to the size of the city and our premier's slow response and Prime Minister to the situation…but anyway…can u tell me where u get your extra strength Clear Lungs..couldn't get it in Florida..

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Jennifer I forgot how to send a private message! I wonder if you got my answer about the place to buy Clear lungs in Canada

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@nick52

Jennifer I forgot how to send a private message! I wonder if you got my answer about the place to buy Clear lungs in Canada

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Hi Nick…can u resend the message again when u have a minute…tks🇨🇦

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@megan123

Hi Nick…can u resend the message again when u have a minute…tks🇨🇦

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@megan123 I buy my ClearLung extra strenght in US at The Vitamine Store is the cheapest 39$/ 120 capsule. They have it on Ebay but very expensive. The company is Ridgecrest and the product is Clearlung EXTRA STRENGHT Very important. Try THE NATIONAL NUTRITION.ca in Ontario. They do mail even during the pandemic here are there number 1-800-526-9772. I saw that they have a product called flush but I don’t about that one but ClearLung Extra Strenght is a must for Bronchiectasis lung. I maintain my lungs with this and having a very normal life. I never wanted to take the cocktail and my infectiologue never recommended it! Hope this will help! You can check any natural store that sells vitamine they may have some!
Love Nicole

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@sueinmn

@nick52 Glad to hear you made it hzome safelt. All,of our Canadian friends were ordered home – many well ahead of planned dates. Did youmencounter issues along the way? One friend found closed rest stops, but the others seem to have done just fine. I wish you an early Spring.
Sue

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@sue volunteer mentor. Thanks Sue! We had a good trip home and we are very safe here only 4 active cases in the South of the province. But like all of us I stay home without going out because of the virus and because it still very cold here and don’t want to get the flu either. Better play it safe than being sorry! I am very worried for all of you in the states because you have almost one million cases that is very scary for us who have lungs issues, stay home stay safe and my prayers are with you all! I am doing very good! No more issues with my lungs and my slummy throat! Soooooi glad! Take care!

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@anniepie i just want to share what my doctor (infectiologue) said to me for MAC . If we were doing bronchoscopy to everybody 80% of the population have it in their lung but it is not active on every one. It is when he start colonized (being active) the problem comes. The cocktail hasn’t been proven totally efficient And the secondary effects isn’t worth the cause in your case. He also said that our acid stomach reflux is mostly the cause according to the scientists he was told at his last conference. So I took care of my stomach first then all possible allergies. With Clear lung extra strength I use it only when I feel a slight difference in my breathing. I ignore the MAC so do not worry too much even if you tested positive as long as your stomach is find no reflux, no sputum and slime throat and your breathing. I recognized that the symptoms are not the same for everyone but it is worth to share my experience. I have no fear from it anymore! Have a Lovely year 2020! Stay home ! Stay Safe!

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@nick52

@anniepie i just want to share what my doctor (infectiologue) said to me for MAC . If we were doing bronchoscopy to everybody 80% of the population have it in their lung but it is not active on every one. It is when he start colonized (being active) the problem comes. The cocktail hasn’t been proven totally efficient And the secondary effects isn’t worth the cause in your case. He also said that our acid stomach reflux is mostly the cause according to the scientists he was told at his last conference. So I took care of my stomach first then all possible allergies. With Clear lung extra strength I use it only when I feel a slight difference in my breathing. I ignore the MAC so do not worry too much even if you tested positive as long as your stomach is find no reflux, no sputum and slime throat and your breathing. I recognized that the symptoms are not the same for everyone but it is worth to share my experience. I have no fear from it anymore! Have a Lovely year 2020! Stay home ! Stay Safe!

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Hi Nick….I have been using Extra Strength Clear Lungs everyday, only 1 pill as a preventative..if I notice an exacerbation which I don't anymore, then I would increase the dosage…maybe this as well as Nac, Oil of Oregano, and Vit D 6,000 plus K, has helped, even with colonized Pseudomonas, MAC, Bronchiectasis….

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@megan123

Hi Nick….I have been using Extra Strength Clear Lungs everyday, only 1 pill as a preventative..if I notice an exacerbation which I don't anymore, then I would increase the dosage…maybe this as well as Nac, Oil of Oregano, and Vit D 6,000 plus K, has helped, even with colonized Pseudomonas, MAC, Bronchiectasis….

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Thinking of everyone — hope we're all getting through this awful time safely. Best of luck, Annie

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A new study titled "Vitamin D Deficiency Linked to Poor Lung Function in Adults With Bronchiectasis" was just posted on "Bronchiectasis News Today". Results revealed that the average levels of 25-hydroxyvitamin D or 25(OH)D — the major form of vitamin D in the blood — were significantly lower in adults with bronchiectasis than in healthy individuals, 14.7 vs. 19.8 nanograms (ng)/mL. In addition, nearly three quarters (73.1%) of the patients with bronchiectasis had vitamin D deficiency, with 25(OH)D levels under 20 ng/mL.
Bottom line from the study was, vitamin D deficiency was common in adult bronchiectasis patients and it might be related to severe radiological findings on chest [CT] and poor lung functions,” the researchers wrote.
I would suggest anyone with Bronchiectasis get their blood level checked before taking any supplements. Bill

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@poodledoc

A new study titled "Vitamin D Deficiency Linked to Poor Lung Function in Adults With Bronchiectasis" was just posted on "Bronchiectasis News Today". Results revealed that the average levels of 25-hydroxyvitamin D or 25(OH)D — the major form of vitamin D in the blood — were significantly lower in adults with bronchiectasis than in healthy individuals, 14.7 vs. 19.8 nanograms (ng)/mL. In addition, nearly three quarters (73.1%) of the patients with bronchiectasis had vitamin D deficiency, with 25(OH)D levels under 20 ng/mL.
Bottom line from the study was, vitamin D deficiency was common in adult bronchiectasis patients and it might be related to severe radiological findings on chest [CT] and poor lung functions,” the researchers wrote.
I would suggest anyone with Bronchiectasis get their blood level checked before taking any supplements. Bill

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I am very fastidious about keeping my D level up to about 50. Lack of vitamin D can play havoc in many ways

Liked by lorifilipek

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This is about taking prednisone to clear up what might be inflammation in my bronchial tubes… I have MAC, bronchiectasis and pseudemonas but those are all under control as of today. About 6 weeks ago, after feeling great for many months, I noticed I was getting breathless with very little activity. I am taking Lung Health and NAC along with Vit D. This came out of nowhere. Finally spoke to my lung doctor who thinks it might be this inflammation and he wants me to take prednisone for two weeks to see if that will help. Has anyone taken prednisone? Can anyone give me insight as to going this route? I am not coughing, I feel well in all other regards and at rest my oxygen is at 96. Thanks so much, Pam

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@pamelasc1 Hi Pam, I can only answer from my own experience here – I had MAC & pseudomonas, but didn't know it. I also had an asthma exacerbation and my primary doc put me on prednisone to try to get it under control. The MAC got worse & worse, I got sicker & sicker, ended up getting diagnosed and treated for over 18 months and am fine right now – except some shortness of breath I attribute to seasonal allergies plus asthma. My pulmonologist says to increase my levalbuterol nebs, not introduce steroids.
There are others on this forum who have been advised that say no steroids ever with bronchiectasis because they suppress the immune system, and there is some evidence that people on immunosuppressants are more susceptible to mycobacterial infections. (see https://www.nationaljewish.org/conditions/ntm-nontuberculous-mycobacteria/ntm-nontuberculous-mycobacteria-overview/causes )
Anyone else want to tell us their experience?
Sue

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@pamelasc1

This is about taking prednisone to clear up what might be inflammation in my bronchial tubes… I have MAC, bronchiectasis and pseudemonas but those are all under control as of today. About 6 weeks ago, after feeling great for many months, I noticed I was getting breathless with very little activity. I am taking Lung Health and NAC along with Vit D. This came out of nowhere. Finally spoke to my lung doctor who thinks it might be this inflammation and he wants me to take prednisone for two weeks to see if that will help. Has anyone taken prednisone? Can anyone give me insight as to going this route? I am not coughing, I feel well in all other regards and at rest my oxygen is at 96. Thanks so much, Pam

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Prednisone is a drug that people love and hate. Being a corticosteroid, it relieves inflammation so we lung patients breathe better. But it has bad side effects, although most are associated with long term use rather than the short burst your doctor is recommending. My doctor says that mycobacterium like steroids so she doesn't want me to take them. I would need to be really, REALLY sick to take prednisone which, being an oral med goes throughout the body. I do inhale Symbicort which has a steroid as one if its drugs. My doctor doesn't like it but my lungs are in such bad shape that I can't function without it.

With our history of lung bacteria, I would hesitate to take prednisone. Budesonide, the steroid in Symbicort, is available as a nebulized drug which means it would go directly into the lungs with very little going into the blood and then throughout the body. Or, you might try one of the many inhaled bronchodilators to see if they would help. Pred should be a last resort.

Jmo.

Liked by lorifilipek

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@rits

Prednisone is a drug that people love and hate. Being a corticosteroid, it relieves inflammation so we lung patients breathe better. But it has bad side effects, although most are associated with long term use rather than the short burst your doctor is recommending. My doctor says that mycobacterium like steroids so she doesn't want me to take them. I would need to be really, REALLY sick to take prednisone which, being an oral med goes throughout the body. I do inhale Symbicort which has a steroid as one if its drugs. My doctor doesn't like it but my lungs are in such bad shape that I can't function without it.

With our history of lung bacteria, I would hesitate to take prednisone. Budesonide, the steroid in Symbicort, is available as a nebulized drug which means it would go directly into the lungs with very little going into the blood and then throughout the body. Or, you might try one of the many inhaled bronchodilators to see if they would help. Pred should be a last resort.

Jmo.

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Very well said!

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@pamelasc1

This is about taking prednisone to clear up what might be inflammation in my bronchial tubes… I have MAC, bronchiectasis and pseudemonas but those are all under control as of today. About 6 weeks ago, after feeling great for many months, I noticed I was getting breathless with very little activity. I am taking Lung Health and NAC along with Vit D. This came out of nowhere. Finally spoke to my lung doctor who thinks it might be this inflammation and he wants me to take prednisone for two weeks to see if that will help. Has anyone taken prednisone? Can anyone give me insight as to going this route? I am not coughing, I feel well in all other regards and at rest my oxygen is at 96. Thanks so much, Pam

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Hi everyone, I do take prednisone but it’s a very low dose and even though it works against my immune system… I still take it for RA everyday. It helps with the inflammation. I also do the nebulizer with albuterol 3 times a week. Be safe all. Rita

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@rits

Prednisone is a drug that people love and hate. Being a corticosteroid, it relieves inflammation so we lung patients breathe better. But it has bad side effects, although most are associated with long term use rather than the short burst your doctor is recommending. My doctor says that mycobacterium like steroids so she doesn't want me to take them. I would need to be really, REALLY sick to take prednisone which, being an oral med goes throughout the body. I do inhale Symbicort which has a steroid as one if its drugs. My doctor doesn't like it but my lungs are in such bad shape that I can't function without it.

With our history of lung bacteria, I would hesitate to take prednisone. Budesonide, the steroid in Symbicort, is available as a nebulized drug which means it would go directly into the lungs with very little going into the blood and then throughout the body. Or, you might try one of the many inhaled bronchodilators to see if they would help. Pred should be a last resort.

Jmo.

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@rits Very well explained. I agree. I take Budesonide 2x daily as an inhalant, through my sinus cleansing device called a “Navage.” I hate that I must resort to it, but I suffer in my sinuses, and then my lungs, if I don’t comply. Which mycobacterium sub-species do you have? (I culture m. Abscessus, MAC, MAI.) I also regularly culture Acintobacter and M. Abscessus in my sinuses.

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