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.

Mentor
Terri Martin, Volunteer Mentor | @windwalker | Nov 11, 2017
In reply to @boomerexpert "@windwalker oh for sure...HH is not known for its medical care for sure...such vaca spots are..." + (show)
@boomerexpert

@windwalker oh for sure...HH is not known for its medical care for sure...such vaca spots are not designed for year 'rounders...hope you can move in the near/mid future...

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@boomerexpert , The drive is 2 1/2 hrs. We don't mind it though. it is one straight shot down I-95 and we enjoy the better shopping and restaurants. I was going every 6 months, but now once a yr. I go back next June, unless I become ill.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Nov 11, 2017
In reply to @bschaper2 "I have another question. Someone here said don't drink tap water, drink spring water. Why not..." + (show)
@bschaper2

I have another question. Someone here said don't drink tap water, drink spring water. Why not purified water? And I use distilled water in my Keurig - is that ok? Thanks you - Barb

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@bschaper2 , Golly girl! you are on top of things!

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Barbara Ann | @bschaper2 | Nov 12, 2017
In reply to @bschaper2 "I have another question. Someone here said don't drink tap water, drink spring water. Why not..." + (show)
@bschaper2

I have another question. Someone here said don't drink tap water, drink spring water. Why not purified water? And I use distilled water in my Keurig - is that ok? Thanks you - Barb

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@windwalker - I have a long way to go and this site, with all of you contributing, have helped more than you will know! Thank you!

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Barbara Ann | @bschaper2 | Nov 12, 2017
In reply to @bschaper2 "I have another question. Someone here said don't drink tap water, drink spring water. Why not..." + (show)
@bschaper2

I have another question. Someone here said don't drink tap water, drink spring water. Why not purified water? And I use distilled water in my Keurig - is that ok? Thanks you - Barb

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@128128terry11t - I stopped that way back, not sure who suggested it here. I keep bottles of water on my sink in bathroom and sink in kitchen which helps me remember, do not use tap water, too.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Nov 12, 2017
In reply to @bschaper2 "I have another question. Someone here said don't drink tap water, drink spring water. Why not..." + (show)
@bschaper2

I have another question. Someone here said don't drink tap water, drink spring water. Why not purified water? And I use distilled water in my Keurig - is that ok? Thanks you - Barb

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@bschaper2 Hi Barb. So glad you are finding this site helpful. That comment confirms that we are all doing something worthwhile here. Have you been able to navigate through the site and find good input and resources?

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Nov 12, 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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@bschaper2 , Barb, I used to cough so violently that I would constantly pull muscles in my torso. My sputem tested positive for pseudomonas. Once that was treated, my cough went away completely.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Nov 12, 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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@nick52, Nicole, you are lucky indeed for socialized medicine.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Nov 12, 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

@nick52, Nicole, I know all of this info can be confusing. That is because many doctors have different theories for testing and treatment. The Gold Standard (although not official) for testing sputem is by taking samples three days in a row (refrigerate the samples) If all three come back positive, then that is a pretty good indicator for full blown infection. Some MAC goes away by itself, but has the chance of returning at any time.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Nov 12, 2017
In reply to @bschaper2 "I have another question. Someone here said don't drink tap water, drink spring water. Why not..." + (show)
@bschaper2

I have another question. Someone here said don't drink tap water, drink spring water. Why not purified water? And I use distilled water in my Keurig - is that ok? Thanks you - Barb

Jump to this post

@bschaper2, Barb, try visiting this site for more info about MAC/NTM at http://www.ntminfo.org

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charleycroch | @charleycroch | Nov 13, 2017

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