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.

nick52 | @nick52 | Jan 3, 2018
In reply to @jkiemen "Just to put it out there. How many people in this group were able to take..." + (show)
@jkiemen

Just to put it out there. How many people in this group were able to take the 3 antibiotics for at least a year?

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I agree with you ncgirl!

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Jo Ann K | @jkiemen | Jan 3, 2018
In reply to @jkiemen "Just to put it out there. How many people in this group were able to take..." + (show)
@jkiemen

Just to put it out there. How many people in this group were able to take the 3 antibiotics for at least a year?

Jump to this post

Excellent!!!

REPLY
unicorn | @unicorn | Jan 3, 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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Chris Miller is the guy that accepted me into the canadian trial, but had to drop out because our insurance does not cover canada. lHe's a nice guy, but said his partners were nervous about the lack of coverage. Canadian are not wanting to cover Americans anymore, because we keep sneaking across the border to get free health care, who knew....

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Jo Ann K | @jkiemen | Jan 3, 2018

Then we need to get one of our centers to be an investigational site.

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1 reply
nick52 | @nick52 | Jan 3, 2018
In reply to @dcoburn "I have just started my MAC journey and the pulmonologist I saw yesterday recommended a chest..." + (show)
@dcoburn

I have just started my MAC journey and the pulmonologist I saw yesterday recommended a chest wall oscillation therapy vest to clear the mucous from my lungs, twice a day for ten minutes. Sure beats all those horrible anti-biotic treatments - if it works! He said that Medicare would pay for it. Not sure whether they would buy it for us (those on Medicare) or pay for the rental. It is quite expensive. Since I am a new member, I was not able to put in the link, but, if you're interested, google for chest wall oscillation therapy vest.

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Thanks for the info dcoburn! Keep us posted!

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nick52 | @nick52 | Jan 3, 2018
In reply to @cathyxyz "I have been part of the chat group for about 5 months, and I would like..." + (show)
@cathyxyz

I have been part of the chat group for about 5 months, and I would like to reply to this question in my opinion. I started on the medications prescribed for me about 6 months ago after having pneumonia. I found after a few months, I couldn't do it. I had felt fine after recovering from pneumonia, speed walking an hour a day, traveling, etc. I did not have a cough. The doctors really scared me into taking the medications. The damage the high doses of antibiotics did to my body and misery it caused were not worth it for such a long time ahead of me in their plan. I just dropped it because I don't believe them. This is just my own opinion. I have read a lot about some doctors who build up the immune system that fights for us every day. There are many epidemics that have spread throughout the world where thousands die and yet thousands don't even catch it even if they have not had any vaccinations because they have a strong immune system. Presently, I am building up my immune system with various things such as vitamins C and D in large doses. I know the body only absorbs so much, but that is just a small example of what I am taking. I have herbs, high does of Colostrum, some Nitric Oxide, and learning more and more. The medical profession would never, ever, have a part in this and that is what we have. Our medical profession is so valuable and life saving to our society, we treasure what they say, and I do too, but they might be wrong sometimes.

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Dear Suenfl,
I am in Largo close to Tampa. It would have been a pleasure to meet you! I know some of you live in Florida. I wonder if we can meet. Let me know those who are interested.

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nick52 | @nick52 | Jan 3, 2018
In reply to @cathyxyz "I have been part of the chat group for about 5 months, and I would like..." + (show)
@cathyxyz

I have been part of the chat group for about 5 months, and I would like to reply to this question in my opinion. I started on the medications prescribed for me about 6 months ago after having pneumonia. I found after a few months, I couldn't do it. I had felt fine after recovering from pneumonia, speed walking an hour a day, traveling, etc. I did not have a cough. The doctors really scared me into taking the medications. The damage the high doses of antibiotics did to my body and misery it caused were not worth it for such a long time ahead of me in their plan. I just dropped it because I don't believe them. This is just my own opinion. I have read a lot about some doctors who build up the immune system that fights for us every day. There are many epidemics that have spread throughout the world where thousands die and yet thousands don't even catch it even if they have not had any vaccinations because they have a strong immune system. Presently, I am building up my immune system with various things such as vitamins C and D in large doses. I know the body only absorbs so much, but that is just a small example of what I am taking. I have herbs, high does of Colostrum, some Nitric Oxide, and learning more and more. The medical profession would never, ever, have a part in this and that is what we have. Our medical profession is so valuable and life saving to our society, we treasure what they say, and I do too, but they might be wrong sometimes.

Jump to this post

I agree with you cathyxyz

REPLY
Bidgee | @josephene | Jan 4, 2018
In reply to @jkiemen "Just to put it out there. How many people in this group were able to take..." + (show)
@jkiemen

Just to put it out there. How many people in this group were able to take the 3 antibiotics for at least a year?

Jump to this post

I was but only kept mac under control. Asoon as I stoppedac galloped ahead. Have now had 11 weeks IV Amakacin therapy & am back on big 3....how long for I dont know...Bidgee.

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nannette | @nannette | Jan 4, 2018
In reply to @jkiemen "Just to put it out there. How many people in this group were able to take..." + (show)
@jkiemen

Just to put it out there. How many people in this group were able to take the 3 antibiotics for at least a year?

Jump to this post

@jkiemen, I'm not on here often but I did the big three for a year and did fine. I took probiotics twice a day. The only side effect thus far (I finished in April of 2017) has been ringing in my left ear. So one of the drugs probably did that. I think I'm holding steady but my next move is going to be herbal antibiotics. It's worth a try. Nan

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jan 4, 2018
In reply to @jkiemen "Just to put it out there. How many people in this group were able to take..." + (show)
@jkiemen

Just to put it out there. How many people in this group were able to take the 3 antibiotics for at least a year?

Jump to this post

@nannette, Hi Nannette! You have been on my mind lately. How have you been feeling?

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