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!

++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
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.

Moderator
Colleen Young, Connect Director | @colleenyoung | Jan 7, 2018
In reply to @franthony "How do I post in this forum? I just joined today, and was just diagnosed with..." + (show)
@franthony

How do I post in this forum? I just joined today, and was just diagnosed with MAC, after being treated for pseudomonas, and having my 12 year diagnosis of non- smoker's COPD emphysema to bronchiectasis. I am a little confused by this all, and as a side note, I have been perfectly fine through this transition in diagnoses. Thanks.

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Dcoburn and Pkayh, to find out about pulmonologists specializing in bronchiectasis and MAC at Mayo Clinic AZ, please call 480-301-8484. Experts from all 3 campuses work together.

You may also be interested in reading this discussion on Connect:
* Physician recommendation - Arizona Mayo Clinic https://connect.mayoclinic.org/discussion/physician-recommendation-arizona-mayo-clinic/

REPLY
nick52 | @nick52 | Jan 7, 2018
In reply to @jkiemen "If we have this information maybe we can compile it in a letter to the companies..." + (show)
@jkiemen

If we have this information maybe we can compile it in a letter to the companies doing the Nitric Oxide studies. Novoclem Therapeutics uses a nitric oxide technology for the treatment of Cystic Fibrosis and other respiratory diseases. http://www.novoclem.com awhitaker@novoclem.com

Contacts
Contact: Chris C Miller, Ph.D. 778-899-0607 miller42@mail.ubc.ca

Locations
Canada, British Columbia
Diamond Centre Recruiting
Vancouver, British Columbia, Canada, V5Z-1L8
Contact: Chris C Miller, Ph.D 778-899-0607 miller42@mail.ubc.ca
Sponsors and Collaborators
University of British Columbia
Novoteris, LLC
Investigators
Principal Investigator: Jeremy D Road, MD Professor

CONTACT
Steven Lisi, Chief Executive Officer
AIT Therapeutics, Inc.
Steve@AIT-Pharm.com

Bob Yedid
LifeSci Advisors, LLC
Bob@LifeSciAdvisors.com
(646) 597 6989

Johannes Lehmann of Technical University of Munich demonstrated that the new inhibitor blocks especially the enzymes Pks13 and Ag85, which play a key role in the development of mycomembranes. beta lactone EZ120

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Lol thanks Colleen

REPLY
nick52 | @nick52 | Jan 7, 2018
In reply to @franthony "How do I post in this forum? I just joined today, and was just diagnosed with..." + (show)
@franthony

How do I post in this forum? I just joined today, and was just diagnosed with MAC, after being treated for pseudomonas, and having my 12 year diagnosis of non- smoker's COPD emphysema to bronchiectasis. I am a little confused by this all, and as a side note, I have been perfectly fine through this transition in diagnoses. Thanks.

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@colleen. Did you get my private message?

REPLY
chinasmom | @chinasmom | Jan 8, 2018
In reply to @pkayh "I was surprised to find a person with exactly the same things I have. I have..." + (show)
@pkayh

I was surprised to find a person with exactly the same things I have. I have never met anyone who has bronchiectasis, let alone MAC also ! After a lot of nighttime coughing, I had a broncoscopy in 2002 after which I had a diagnosis of bronchiectasis and MAC. My doctor explained that the goal was to avoid a worsening of the disease, I have done pretty well at that, but it has progressed over these 16 or so years. I also have ankylosing spondylosis (arthritis) which is not much fun either. My doctor (s) think this arthritis has stiffened my breathing cartiledge so my lungs don't expand properly.

I will be 80 this year and have been able to live a pretty normal life, even with those diseases. I am an artist, which is a fortunate activity not requiring a lot of movement.

I am now taking Azithromycin and ethambutol for a year in hopes of getting rid of my MAC. I seem to not be adversely affected by the antibiotics.

Anyway, I appreciate knowing there are others in my shoes to talk to.

pkayh

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@pkayh, Good day. Your words are very familiar. For years, before my diagnosis, I have said even taking a shower is exhausting. I couldn't figure out why. But I've cut back to every other day just to conserve energy.
You asked about how to thicken liquid. There is a powder I think it's called thickit. You can buy it at cvs or other places with a pharmacy. Medical supply stores would carry it too. You just add it to your liquid and stir. I used it in nursing homes for patients with swollowing issues many year's ago.
Becky

REPLY
Jo Ann K | @jkiemen | Jan 8, 2018
In reply to @boomerexpert "@franthony You just did! And welcome! And if you wish to post a reply to someone..." + (show)
@boomerexpert

@franthony You just did! And welcome! And if you wish to post a reply to someone specifically, just do what I did here and start with their @name

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Good advise .. I wonder should we be disinfecting our toothbrushes anyway? Can they also have MAC on them

REPLY
irene5 Irene Estes | @irene5 | Jan 8, 2018
In reply to @boomerexpert "@franthony You just did! And welcome! And if you wish to post a reply to someone..." + (show)
@boomerexpert

@franthony You just did! And welcome! And if you wish to post a reply to someone specifically, just do what I did here and start with their @name

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I don’t know about MAC on a toothbrush, but it is always recommended that you change out your toothbrush after strep. Having raised ten children I know that one only too well! Kids keep reinfecting themselves when they don’t change out the toothbrush. So it would only make sense to disinfect your toothbrush or keep a supply of new ones handy.

REPLY
joan912 | @joan912 | Jan 8, 2018
In reply to @boomerexpert "@franthony You just did! And welcome! And if you wish to post a reply to someone..." + (show)
@boomerexpert

@franthony You just did! And welcome! And if you wish to post a reply to someone specifically, just do what I did here and start with their @name

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I put my toothbrushes in an ultraviolet container after I use them to be disinfected.

REPLY
pkayh | @pkayh | Jan 8, 2018
In reply to @pkayh "I was surprised to find a person with exactly the same things I have. I have..." + (show)
@pkayh

I was surprised to find a person with exactly the same things I have. I have never met anyone who has bronchiectasis, let alone MAC also ! After a lot of nighttime coughing, I had a broncoscopy in 2002 after which I had a diagnosis of bronchiectasis and MAC. My doctor explained that the goal was to avoid a worsening of the disease, I have done pretty well at that, but it has progressed over these 16 or so years. I also have ankylosing spondylosis (arthritis) which is not much fun either. My doctor (s) think this arthritis has stiffened my breathing cartiledge so my lungs don't expand properly.

I will be 80 this year and have been able to live a pretty normal life, even with those diseases. I am an artist, which is a fortunate activity not requiring a lot of movement.

I am now taking Azithromycin and ethambutol for a year in hopes of getting rid of my MAC. I seem to not be adversely affected by the antibiotics.

Anyway, I appreciate knowing there are others in my shoes to talk to.

pkayh

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Thanks for the information.

Pat

REPLY
pkayh | @pkayh | Jan 8, 2018
In reply to @franthony "How do I post in this forum? I just joined today, and was just diagnosed with..." + (show)
@franthony

How do I post in this forum? I just joined today, and was just diagnosed with MAC, after being treated for pseudomonas, and having my 12 year diagnosis of non- smoker's COPD emphysema to bronchiectasis. I am a little confused by this all, and as a side note, I have been perfectly fine through this transition in diagnoses. Thanks.

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Thanks so much.  I will call this Mayo number and see what I can find out.  I would also like to hear from some who can recommend a specific doctor.

REPLY
nick52 | @nick52 | Jan 8, 2018
In reply to @pkayh "I was surprised to find a person with exactly the same things I have. I have..." + (show)
@pkayh

I was surprised to find a person with exactly the same things I have. I have never met anyone who has bronchiectasis, let alone MAC also ! After a lot of nighttime coughing, I had a broncoscopy in 2002 after which I had a diagnosis of bronchiectasis and MAC. My doctor explained that the goal was to avoid a worsening of the disease, I have done pretty well at that, but it has progressed over these 16 or so years. I also have ankylosing spondylosis (arthritis) which is not much fun either. My doctor (s) think this arthritis has stiffened my breathing cartiledge so my lungs don't expand properly.

I will be 80 this year and have been able to live a pretty normal life, even with those diseases. I am an artist, which is a fortunate activity not requiring a lot of movement.

I am now taking Azithromycin and ethambutol for a year in hopes of getting rid of my MAC. I seem to not be adversely affected by the antibiotics.

Anyway, I appreciate knowing there are others in my shoes to talk to.

pkayh

Jump to this post

@pkayh you can also order it on the internet.  Check for simply thick or thicken up by nestlé but use the CLEAR. I could send you few packet for you to try if I get your address.  Send me a private message.  Talk to Colleen how to do that.

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