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!

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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:
- 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.

heathert | @heathert | Nov 7, 2017
In reply to @windwalker "@joan912, Hello Joan. I'd like to commend you for being such a good advocate for your..." + (show)
@windwalker

@joan912, Hello Joan. I'd like to commend you for being such a good advocate for your husband. I feel like your husband shouldn't worry too much about Dr. Scrodin's age/experience, because the Mayo only takes on the best to work there. Sometimes 'older, more experienced' isn't always the best thing. Sometimes the older ones get complacent and do not keep up with current trends in medicine. Your doctor will have a team working with her in the way of radiologists, etc. Your husband is going to the best place for what he has going on. On my first initial visit to the Mayo, I had to hand carry in all of my medical records and films and they scanned them into my file there. Your husband needs to bring his test results for the mac, and his Ct scan, and anything else he had done recently. (if you have not already sent his records over) The tests they are likely to do are: bloodwork labs, sputem test, chest x-ray, and breathing tests, and final doctor office visit to sum up what the tests reveal and a plan for treatment. The doctor will compare results to that of his past doctor. Since his other tests are so recent, you may be able to get away with her just looking over what he has had done already and get opinion on treatment. You will be receiving an itinerary in the mail soon that will tell what tests are being scheduled. Your husband being a doctor himself can determine if he really needs re-testing and ask about that. They probably will definitely want to do a sputem test along with a suseptibility test unless they are confident that the lab that did his last one at diagnosis was a competent one. If his last tests were done well, maybe ask for them to be reviewed for a second opinion on a treatment plan and not have to repeat the tests. I hope you will let us know what you find out. Please tell your husband best of luck to him from his friends on connect.

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Wow fantastic news, they really are getting on with this quick smart, yehaaaaaa! Thanks @unicorn

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heathert | @heathert | Nov 7, 2017
In reply to @bschaper2 "Wow, I have been gone too long from this site. Nicole, love your video above. Question..." + (show)
@bschaper2

Wow, I have been gone too long from this site. Nicole, love your video above.

Question 1 - for those of you that use the saline inhalation 7% twice daily -- how the heck to you get the whole vial inhaled without coughing to death? I usually only make it 1/4 to 1/3 through it before I am coughing so bad that I just cannot finish. Is this normal?

Question 2- do you all believe that certain foods cause more mucus and if so, what foods, please?

Thanks - Barb

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Thanks @nick52 I will have a look at the site, I know it all works for me. 🙂

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nick52 | @nick52 | Nov 7, 2017
In reply to @jazzmindavis "OMG I was just diagnosed in July of this year. I was terrified. I have started..." + (show)
@jazzmindavis

OMG I was just diagnosed in July of this year. I was terrified. I have started my antibiotics 2 weeks ago. My question to you is...when you started your antibiotics did you have any chest discomfort in the first few weeks? I've been told I have a hole in my right lung and I find I'm having discomfort from time to time...regards
Jazzmin

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https://www.google.ca/search?q=can+aspiration+cause+bronchiestasis&ie=UTF-8&oe=UTF-8&hl=en-ca&client=safari
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nick52 | @nick52 | Nov 7, 2017
In reply to @bschaper2 "Wow, I have been gone too long from this site. Nicole, love your video above. Question..." + (show)
@bschaper2

Wow, I have been gone too long from this site. Nicole, love your video above.

Question 1 - for those of you that use the saline inhalation 7% twice daily -- how the heck to you get the whole vial inhaled without coughing to death? I usually only make it 1/4 to 1/3 through it before I am coughing so bad that I just cannot finish. Is this normal?

Question 2- do you all believe that certain foods cause more mucus and if so, what foods, please?

Thanks - Barb

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Dear fFollowers,

I am  a little confuse when I read your results on Sputum test.  According to my lung Dr. These sputum tests are not that accurate. I ask for a test because of what you are all ,talking a lot about it and my result was negative. As you know result of my

lab test after a bronchoscopy was positive for a MAC 3 years ago. This summer the sputum was negative and in the fall I had a bronchoscopy.  As you know I am and never been on the antibiotic cocktail since the discovery in 2009 after a severe pneumonia. Tomorrow

i have my last appointment before we leave for Florida and I should get my result of the bronco lab test in sept. 

REPLY
nick52 | @nick52 | Nov 7, 2017
In reply to @joan912 "I have a question for those folks who go to the Mayo Clinic in Rochester. My..." + (show)
@joan912

I have a question for those folks who go to the Mayo Clinic in Rochester. My husband has been diagnosed with MAC and bronchiectasis. He wants another opinion from a more specialized doctor than those we have here in Kaiser. I contacted the Mayo Clinic and he has an appointment on November 29. He will be seeing Megan M. Dulohery Scrodin, M.D. She specializes in NTM and bronchiectasis, among other areas. This seems to be good, but my husband, who is also a medical doctor, feels she may be a bit young and not experienced enough. He is wondering whether when you're seen there (at least initially), are you seen by the main doctor as well as others for the initial consultation? Also, what tests will be performed? He just had a CT a couple of weeks ago, so I do not think they'll schedule another one so soon.
On another topic, I was told that the tests would be taken over 2-4 days, and I'm scheduling 3 days, hoping that will be enough. It will be expensive to go there, but I want my husband to get all the tests that are required. One person who went to Arizona Mayo said they talked him into taking extra tests which ended up costing significantly more. I was quoted an initial cost of $5000 (all this will be out-of-pocket, Kaiser not granting a second opinion, and we're not on Medicare yet). I hope this will not be exceeded. I would appreciate anyone's experience with this.

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I feel so lucky to live in Canada.  All our medical service here are all free of charge because our government cover all cost. It is a privilege. I sympathise with you who have to pay 5000$ for test. Wow! 

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Barbara Ann | @bschaper2 | Nov 8, 2017
In reply to @bschaper2 "Wow, I have been gone too long from this site. Nicole, love your video above. Question..." + (show)
@bschaper2

Wow, I have been gone too long from this site. Nicole, love your video above.

Question 1 - for those of you that use the saline inhalation 7% twice daily -- how the heck to you get the whole vial inhaled without coughing to death? I usually only make it 1/4 to 1/3 through it before I am coughing so bad that I just cannot finish. Is this normal?

Question 2- do you all believe that certain foods cause more mucus and if so, what foods, please?

Thanks - Barb

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thank you, making a list, too bad someone doesn't have a sensitivity test for these types of things

REPLY
Barbara Ann | @bschaper2 | Nov 8, 2017
In reply to @bschaper2 "Wow, I have been gone too long from this site. Nicole, love your video above. Question..." + (show)
@bschaper2

Wow, I have been gone too long from this site. Nicole, love your video above.

Question 1 - for those of you that use the saline inhalation 7% twice daily -- how the heck to you get the whole vial inhaled without coughing to death? I usually only make it 1/4 to 1/3 through it before I am coughing so bad that I just cannot finish. Is this normal?

Question 2- do you all believe that certain foods cause more mucus and if so, what foods, please?

Thanks - Barb

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thank you, now looking at Naet test

REPLY
Barbara Ann | @bschaper2 | Nov 8, 2017
In reply to @bschaper2 "Wow, I have been gone too long from this site. Nicole, love your video above. Question..." + (show)
@bschaper2

Wow, I have been gone too long from this site. Nicole, love your video above.

Question 1 - for those of you that use the saline inhalation 7% twice daily -- how the heck to you get the whole vial inhaled without coughing to death? I usually only make it 1/4 to 1/3 through it before I am coughing so bad that I just cannot finish. Is this normal?

Question 2- do you all believe that certain foods cause more mucus and if so, what foods, please?

Thanks - Barb

Jump to this post

darn it, I was afraid chocolate would be one - adding it to the list

REPLY
Barbara Ann | @bschaper2 | Nov 8, 2017
In reply to @bschaper2 "Wow, I have been gone too long from this site. Nicole, love your video above. Question..." + (show)
@bschaper2

Wow, I have been gone too long from this site. Nicole, love your video above.

Question 1 - for those of you that use the saline inhalation 7% twice daily -- how the heck to you get the whole vial inhaled without coughing to death? I usually only make it 1/4 to 1/3 through it before I am coughing so bad that I just cannot finish. Is this normal?

Question 2- do you all believe that certain foods cause more mucus and if so, what foods, please?

Thanks - Barb

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I have sinus infection so getting a new nebulizer -- maybe that will hope. I cough so hard my insides feel like they are ripping. I make it 1 to 4 minutes only. Even tried taking a break but no luck. Thank you.

REPLY
Barbara Ann | @bschaper2 | Nov 8, 2017
In reply to @bschaper2 "Wow, I have been gone too long from this site. Nicole, love your video above. Question..." + (show)
@bschaper2

Wow, I have been gone too long from this site. Nicole, love your video above.

Question 1 - for those of you that use the saline inhalation 7% twice daily -- how the heck to you get the whole vial inhaled without coughing to death? I usually only make it 1/4 to 1/3 through it before I am coughing so bad that I just cannot finish. Is this normal?

Question 2- do you all believe that certain foods cause more mucus and if so, what foods, please?

Thanks - Barb

Jump to this post

Thank you, Nicole - that is a lot of good information. If you don't eat eggs for breakfast, what do you eat?

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