(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

@ginak

Hi All, just some info I read about for anyone suffering from the chronic cough that comes with MAC. Not talking about the productive cough to rid the lungs of excess mucus, but the annoying, constant cough that sometimes even leads to gagging. I just read an article in the ASHA Leader. (That’s the professional magazine for Speech Language Pathologists.) When The Coughing Won’t Stop, November 2019. It talks about receiving Behavioral Cough Suppressant Therapy, (BCST), from a Speech Language Pathologist, (SLP), that specializes in voice and upper airway disorders and has received additional training in BCST. I AM an SLP and have never heard about this before. I found it very interesting. 80% of patient’s benefit from BCST therapy to learn how to control and minimize the coughing that interferes with everyday life. They talk about the cause being hypersensitivity to outside stimuli; perfume, smoke, dust, change in air temps, talking, laughing, etc., and can also occur in certain areas of the brain. Hypersensitivity can also be caused by coughing! So coughing makes us cough more! Only problem is physicians are not aware of this therapy, (surprise), so they don’t know to recommend it, AND there aren’t many SLPs trained or educated in it. I thought everyone would find it interesting and there may be some who would really benefit from this type of therapy.
Gina K

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@ginak Wow thanks for that info, very informative, so maby it is not from the MAC but just our sensitivities, which I have had all my life and maby notice it more when I know I have a lung problem.

Liked by ginak

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@ginak

Hi All, just some info I read about for anyone suffering from the chronic cough that comes with MAC. Not talking about the productive cough to rid the lungs of excess mucus, but the annoying, constant cough that sometimes even leads to gagging. I just read an article in the ASHA Leader. (That’s the professional magazine for Speech Language Pathologists.) When The Coughing Won’t Stop, November 2019. It talks about receiving Behavioral Cough Suppressant Therapy, (BCST), from a Speech Language Pathologist, (SLP), that specializes in voice and upper airway disorders and has received additional training in BCST. I AM an SLP and have never heard about this before. I found it very interesting. 80% of patient’s benefit from BCST therapy to learn how to control and minimize the coughing that interferes with everyday life. They talk about the cause being hypersensitivity to outside stimuli; perfume, smoke, dust, change in air temps, talking, laughing, etc., and can also occur in certain areas of the brain. Hypersensitivity can also be caused by coughing! So coughing makes us cough more! Only problem is physicians are not aware of this therapy, (surprise), so they don’t know to recommend it, AND there aren’t many SLPs trained or educated in it. I thought everyone would find it interesting and there may be some who would really benefit from this type of therapy.
Gina K

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Ginak. That’s certainly something to think about. I have coughed unproductively until I gag and my nose runs!! It seems to be especially bad when I’m trying to fall asleep…so annoying. Also I do have many allergies to things such as perfumes, dust, going outside in winter etc. This training may be worth a try.

Liked by ginak, ling123

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@ginak

Hi All, just some info I read about for anyone suffering from the chronic cough that comes with MAC. Not talking about the productive cough to rid the lungs of excess mucus, but the annoying, constant cough that sometimes even leads to gagging. I just read an article in the ASHA Leader. (That’s the professional magazine for Speech Language Pathologists.) When The Coughing Won’t Stop, November 2019. It talks about receiving Behavioral Cough Suppressant Therapy, (BCST), from a Speech Language Pathologist, (SLP), that specializes in voice and upper airway disorders and has received additional training in BCST. I AM an SLP and have never heard about this before. I found it very interesting. 80% of patient’s benefit from BCST therapy to learn how to control and minimize the coughing that interferes with everyday life. They talk about the cause being hypersensitivity to outside stimuli; perfume, smoke, dust, change in air temps, talking, laughing, etc., and can also occur in certain areas of the brain. Hypersensitivity can also be caused by coughing! So coughing makes us cough more! Only problem is physicians are not aware of this therapy, (surprise), so they don’t know to recommend it, AND there aren’t many SLPs trained or educated in it. I thought everyone would find it interesting and there may be some who would really benefit from this type of therapy.
Gina K

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@ginak Thank you for sharing the information about coughing. I'm allergic to many things, both indoor and outdoor kinds. My throat is constantly in a irritated state. I can go for hours without coughing even once. Then the throat gets itchy and I immediately feel the need to cough. I have tried to suppress it by sipping water. Sometimes it works and sometimes not. When I cannot control it with water, holding the cough would only lead to eventual violent eruption of longer and stronger coughs. At times, I do suspect that my allergies are only part of the reason that I cough. The other part is kind of mental, because sometimes when I realize that I haven't coughed for a while, my throat will immediately feel itchy. Also I don't cough in my sleep although my throat must have felt the same as when I'm awake. So it is definitely a combination of physical and mental aspects that induce the cough.

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@sounder27

Ginak. That’s certainly something to think about. I have coughed unproductively until I gag and my nose runs!! It seems to be especially bad when I’m trying to fall asleep…so annoying. Also I do have many allergies to things such as perfumes, dust, going outside in winter etc. This training may be worth a try.

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@sounder27 I also have trouble with coughing when I'm lying down. But once I fall asleep, coughing stops. I have water by my bedside at all times to try to lubricate my throat. Very annoying. Wish it would stop.

Liked by ginak

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@sounder27

Ginak. That’s certainly something to think about. I have coughed unproductively until I gag and my nose runs!! It seems to be especially bad when I’m trying to fall asleep…so annoying. Also I do have many allergies to things such as perfumes, dust, going outside in winter etc. This training may be worth a try.

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Hi All! I have coughed for 5 years and thought it will never end. I have one vocal cord and Sjogrens plus RA so I thought that’s how it’s going to be for the rest of my life. But I stopped all the coughing 3 months ago and I still can’t believe it myself! In July I was tested negative for Mac and pseudomonas and that’s when I stopped coughing. I am not sure if it’s meds or results but it stopped at the same time. I still sip water at night because of the dryness in my throat because of Sjogrens but no coughing. So I do believe it will get better. Hugs to all Rita

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@america

Hi All! I have coughed for 5 years and thought it will never end. I have one vocal cord and Sjogrens plus RA so I thought that’s how it’s going to be for the rest of my life. But I stopped all the coughing 3 months ago and I still can’t believe it myself! In July I was tested negative for Mac and pseudomonas and that’s when I stopped coughing. I am not sure if it’s meds or results but it stopped at the same time. I still sip water at night because of the dryness in my throat because of Sjogrens but no coughing. So I do believe it will get better. Hugs to all Rita

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Well that is just awesome! Yay!!

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@america

Hi All! I have coughed for 5 years and thought it will never end. I have one vocal cord and Sjogrens plus RA so I thought that’s how it’s going to be for the rest of my life. But I stopped all the coughing 3 months ago and I still can’t believe it myself! In July I was tested negative for Mac and pseudomonas and that’s when I stopped coughing. I am not sure if it’s meds or results but it stopped at the same time. I still sip water at night because of the dryness in my throat because of Sjogrens but no coughing. So I do believe it will get better. Hugs to all Rita

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@american
Rita that's great news I'm so glad your feeling better!
Shari

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Rita, This post of yours makes me especially happy because I remember how miserable you felt when you first joined us. I know how relieving it is not to cough any more. I hope you are enjoying the beach and everything else. Big hug to you!

Liked by anniepie

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@ling123

@ginak Thank you for sharing the information about coughing. I'm allergic to many things, both indoor and outdoor kinds. My throat is constantly in a irritated state. I can go for hours without coughing even once. Then the throat gets itchy and I immediately feel the need to cough. I have tried to suppress it by sipping water. Sometimes it works and sometimes not. When I cannot control it with water, holding the cough would only lead to eventual violent eruption of longer and stronger coughs. At times, I do suspect that my allergies are only part of the reason that I cough. The other part is kind of mental, because sometimes when I realize that I haven't coughed for a while, my throat will immediately feel itchy. Also I don't cough in my sleep although my throat must have felt the same as when I'm awake. So it is definitely a combination of physical and mental aspects that induce the cough.

Jump to this post

@ling123 Hi Ling! Well, that is an interesting aspect to coughing, in that some of it could be pyscological. Could it also become a habit maybe?

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@sounder27

Ginak. That’s certainly something to think about. I have coughed unproductively until I gag and my nose runs!! It seems to be especially bad when I’m trying to fall asleep…so annoying. Also I do have many allergies to things such as perfumes, dust, going outside in winter etc. This training may be worth a try.

Jump to this post

@sounder27 Hi. I had high sensitivities to all that you stated and then some. I felt as if I needed to live in a bubble to avoid it all. I was like that for yrs until I was treated for mac & pseudomonas. These sensitivities are a hallmark symptom of mac infection. Fortunately, this all went away once the infection went negative. I hope that happens for you as well.

Liked by sounder27

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@heathert

@anniepie Thank you so much. I will be trying some vitamins, I wish there was some sort of protocol to follow tho. I will definitely stay on mayo and help where I can. Hugs to you too Annie

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@heathert, I hope you will always be with us on this Mayo site. I would miss you too much if you left. I mean it. You and I go way back already. Having a disease with so many uncertainties; it is nice to have the constant of having our familiar comrades. That goes for the rest of you 'long timers'. You know who you are! Sending my love and appreciation out to all of you.

Liked by ling123, anniepie

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@windwalker

@ling123 Hi Ling! Well, that is an interesting aspect to coughing, in that some of it could be pyscological. Could it also become a habit maybe?

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@windwalker Terri, it is very possible. I used to cough a lot and had to carry water wherever I went. Then I went through months of allergy shots and the coughing subsided significantly to barely noticeable. The interesting thing is that it didn't come back when I was diagnosed with MAC 5 years ago. But it came back earlier this year and has reached a level almost the same as I had years before. I don't know what is going on. The only thing I know is that I feel very healthy still and nothing else has changed for me physically. I have an followup appointment with my pulmonologist in December. If there is no change in my lung condition by then, I'll be happy to just live with it because I know that the allergy shot treatment must have worn off by now and there is not much I can do about it.

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@ling123

@sounder27 I also have trouble with coughing when I'm lying down. But once I fall asleep, coughing stops. I have water by my bedside at all times to try to lubricate my throat. Very annoying. Wish it would stop.

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I have an adjustable bed…no coughing here…

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@ling123

@windwalker Terri, it is very possible. I used to cough a lot and had to carry water wherever I went. Then I went through months of allergy shots and the coughing subsided significantly to barely noticeable. The interesting thing is that it didn't come back when I was diagnosed with MAC 5 years ago. But it came back earlier this year and has reached a level almost the same as I had years before. I don't know what is going on. The only thing I know is that I feel very healthy still and nothing else has changed for me physically. I have an followup appointment with my pulmonologist in December. If there is no change in my lung condition by then, I'll be happy to just live with it because I know that the allergy shot treatment must have worn off by now and there is not much I can do about it.

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@ling123 For what reason do you not do another round of allergy shots?

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@windwalker

@sounder27 Hi. I had high sensitivities to all that you stated and then some. I felt as if I needed to live in a bubble to avoid it all. I was like that for yrs until I was treated for mac & pseudomonas. These sensitivities are a hallmark symptom of mac infection. Fortunately, this all went away once the infection went negative. I hope that happens for you as well.

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Windwalker. Thanks so much for your good wishes. I have had a little setback with the Arikayce treatment. After 10 days I spiked a fever for 2 days with a rusty/Smokey cough and headache that lasted about a week and a half. Pulmonologist wasn’t sure if it was a reaction to the Arikayce or a virus. He advised that I wait until symptoms subsided and then try the Arikayce again which I will be doing this week.

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