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Katherine, Alumni Mentor
@katemn

Posts: 1501
Joined: Nov 21, 2011

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

Posted by @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

REPLY

@windwalker

@suzie2017, I am no doctor, but I feel like given his weakened state, they should only tackle the pseudo with one drug. I don't know all of the specifics of what is going on with him; but that is my gut feeling about it. I am glad to hear that he has put some weight back on.

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Right now he is not taking any antibiotics whatsoever. His doctor said he will not treat the pseudo until it flairs up again. He was (about 3 -4 weeks ago) receiving Zosin by IV for pseudo. Right now he is doing well except for fatigue. I know that another flair up is probably around the corner but I will enjoy him feeling pretty good for now.

@windwalker

@flib No, you don't exhale back into the mouthpiece. It's almost like smoking.

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@terri. Thank you. The smoking analogy is very helpful.

@oldkarl

I just noticed something while reading this line. It may be helpful for whomever started it. Apparently there are at least a couple kinds of bronchiectasis. One is Chronic. For quite some time, Mayo clinic and other clinics and schools have said that Chronic Bronchiectasis is almost a certain obligate positive sign of some forms of Amyloidosis. I know I have it, and I have some form of Gelsolin, apparently. I have talked with others who have been diagnosed with Chronic Bronchiectasis, and also with various forms of Amyloidosis. gelsolin, AL, HATTR, Multiple Myeloma, LECT2, even Alzheimer's. Also others which I have forgotten. Two things. Write down your conversations with others who share any part of your diagnosis. You never know when yours or their disorder will catch up to the other's, and you will wish you could remember who it was so you could go back and ask more. Also, Some things are never their own background disease, like Chronic Bronchiectasis.

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@oldkarl Excellent info and advice. Thank you.

@windwalker

@flib No, you don't exhale back into the mouthpiece. It's almost like smoking.

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@windwalker888
Hi Terri.. I was reading this link and wondering about the saline treatments and if I'm doing them wrong.
I do them by continuously holding the mouthpiece in my mouth inhaling and exhaling, this is the same way I do my asthma medication or antibiotic medications in the nebulizer.
When I have been in the hospital and using a medication by nebulizer the respiratory therapist never said do it otherwise.
Also I use the 7% saline from the pharmacy and it only takes 10-15 minutes for me. Just wanted to make sure I'm doing it right or not.
Thanks!!
Shari

@pfists

@windwalker888
Hi Terri.. I was reading this link and wondering about the saline treatments and if I'm doing them wrong.
I do them by continuously holding the mouthpiece in my mouth inhaling and exhaling, this is the same way I do my asthma medication or antibiotic medications in the nebulizer.
When I have been in the hospital and using a medication by nebulizer the respiratory therapist never said do it otherwise.
Also I use the 7% saline from the pharmacy and it only takes 10-15 minutes for me. Just wanted to make sure I'm doing it right or not.
Thanks!!
Shari

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@pfists – Hi, Shari! I have bronchiectasis, MAC and cystic fibrosis. I do breathing treatments at least twice a day – more if I'm sick and need additional clearance of my airways. It takes me about 10 – 15 mins also for the saline portion of my treatment, breathing slowly in and out with the mouthpiece in my mouth. The link that was provided by @alleycatkate yesterday has a link for a 3 min video that is a good resource to watch. It sounds like you are doing it properly. Linda

Liked by pfists

@oldkarl

I just noticed something while reading this line. It may be helpful for whomever started it. Apparently there are at least a couple kinds of bronchiectasis. One is Chronic. For quite some time, Mayo clinic and other clinics and schools have said that Chronic Bronchiectasis is almost a certain obligate positive sign of some forms of Amyloidosis. I know I have it, and I have some form of Gelsolin, apparently. I have talked with others who have been diagnosed with Chronic Bronchiectasis, and also with various forms of Amyloidosis. gelsolin, AL, HATTR, Multiple Myeloma, LECT2, even Alzheimer's. Also others which I have forgotten. Two things. Write down your conversations with others who share any part of your diagnosis. You never know when yours or their disorder will catch up to the other's, and you will wish you could remember who it was so you could go back and ask more. Also, Some things are never their own background disease, like Chronic Bronchiectasis.

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@oldkarl Hi Karl. Are you possibly confusing chronic bronchiectasis with chronic bronchitis? I have never heard of chronic bronchiectasis.

Liked by ling123

@windwalker Absolutely not, I am not confusing Chronic Bronchiectasis with chronic bronchitis, and neither are the folks on this line who speak of bronchiectasis, and neither is Mayo Clinic who diagnosed mine and others. chronic bronchitis can be a result of simple acute Bronchiectasis. Chronic Bronchiectasis can result in death if the infection spreads into other areas, according to Mayo. If I understand it properly, Bronchiectasis is when the tissue of the bronchi are loaded with fibrils from pulmonary Amyloidosis and cannot operate properly. Bronchitis is an inflammation of the bronchi. Huge difference. Chronic Bronchiectasis (not acute) is quite rare, probably around 10 diagnoses per million per year would be my guess. And many doctors will never know about it, and certainly not diagnose it. It is rather common among certain Amyloidosis cases, especially Light Chain forms like mine, Gelsolin.

@oldkarl Thank you for clarifying that Karl.

@windwalker

@heathert Gosh girl! I don't know if I could stand myself if I ate raw garlic. No kisses for you! LOL

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@windwalker oh come on I dont want to be the only one! haha

@windwalker

@heathert my saline treatment takes about 30 mins to get through.

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@windwalker timed mine yesterday and it took about 15mins.

@flib

Thank you. The thing that confuses me is blowing back into the mouthpiece and into the nebulizer. I've also read to never return the mist to the nebulizer.

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@flib. @windwalker Hi…Now I am confused about blowing back into the nebulizer. The video I posted shows to just keep the nebulizer in the mouth and blow back into it. ?? Hope that is not wrong. That is how I have been doing it.

@alleycatkate I cannot speak for every piece of equipment, by my nebulizer is made to both inhale and exhale through the mouthpiece. There are holes just out of the lip area so the moistened air is always available but will not build up much pressure when you exhale. Works very well for me.

Liked by alleycatkate

@oldkarl .. Thanks so much! I very much appreciate your information. Kate

@windwalker

@megan123 Hi Jennifer. He has gone to every appt with me. He knows. He just wasn't thinking at the time. I reminded him again. I may talk to the mom of the kids and explain it to her. That way, she will think before asking us the next time. They are are building a house and she has constant errands….. I don't mind watching her kids, but we are coming into cold and flu season.

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Just be careful and look after yourself

@windwalker

@oldkarl Hi Karl. Are you possibly confusing chronic bronchiectasis with chronic bronchitis? I have never heard of chronic bronchiectasis.

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@oldkarl I'm with @windwalker Terri. I have never heard of chronic being used with bronchiectasis. I thought bronchiectasis IS chronic. Once you are diagnosed with it's for life. There is no cure. When you put chronic and bronchiectasis together, it is as if bronchiectasis can be transient and curable. That makes no sense to me.

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