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.

pfists | @pfists | 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 @lindam272
I have been on the two herbs Criptolepsis and Bidens for a year now with nothing but great results. My MAC went from positive to negative last May and stayed that way. I credit the change totally to the herbs. I started out slow but worked up to 30 drops of each tree times a day.
I had the bad kind of MAC too the "abcessus."
Please keep us updated how you are doing with them.
I also figured when I stayed what have I got to lose and I'm so glad I gave them a try. I have to say I haven't had one negative effects from the herbs.
Take care
Shari

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Jennifer | @megan123 | 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 thought I've read that you can't kill MAC. Lays dorminant, but can resurface...just asking

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boomerexpert | @boomerexpert | Jan 4, 2018
In reply to @suenfl "I am in Florida. I would love to take part in a nitrous oxide trial here,..." + (show)
@suenfl

I am in Florida. I would love to take part in a nitrous oxide trial here, as many of you would. The problem is funding. The Canadian one that I know of, there may be others, has funding for 10 local people. I have MAC, diagnosed in July, 2017, but traced back to my open heart surgery in Nov, 2015. I was telling all of my Drs then, what symptoms I was having and they blew me off. No one paid any attention until I had pneumonia 5x in 7 mos. Taking the normal triple antibiotic therapy, but I am so sick from theses drugs. A lot of people are getting this, we need the drug companies, researchers, etc. to take notice and get some clinical trials started. Also Drs need to be more aware of the signs an symptoms so they can diagnose it correctly. Any of you that feel up to making phone calls, call everyone you can think of that can help directly or direct you to someone who can. It all comes down to getting the money to do the research.

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@jkliemen @irene5 @heathert @unicorn @dcoburn @cathyxyz @ling123 @suenfl @ncgirl @nick52 @josephene @windwalker we must all contact the FDA, inform them of the extreme need not only b/c the problem is growing exponentially (now impacting folks who are not immunocompromised), but the inefficiency of the current old-school regimen (just pile on more ineffective antibiotics to make the combo a bit more effective). A reminder that if there were a reporting requirement for this infection as there is for TB, the numbers would explode.

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irene5 Irene Estes | @irene5 | Jan 4, 2018
In reply to @suenfl "I am in Florida. I would love to take part in a nitrous oxide trial here,..." + (show)
@suenfl

I am in Florida. I would love to take part in a nitrous oxide trial here, as many of you would. The problem is funding. The Canadian one that I know of, there may be others, has funding for 10 local people. I have MAC, diagnosed in July, 2017, but traced back to my open heart surgery in Nov, 2015. I was telling all of my Drs then, what symptoms I was having and they blew me off. No one paid any attention until I had pneumonia 5x in 7 mos. Taking the normal triple antibiotic therapy, but I am so sick from theses drugs. A lot of people are getting this, we need the drug companies, researchers, etc. to take notice and get some clinical trials started. Also Drs need to be more aware of the signs an symptoms so they can diagnose it correctly. Any of you that feel up to making phone calls, call everyone you can think of that can help directly or direct you to someone who can. It all comes down to getting the money to do the research.

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Couldn’t have said that better!

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sharonestabrook | @sharonestabrook | 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 am new to this sight. I am 69 and have been diagnosed for 8 months. I have GERD also, but otherwise healthy. I am not on any meds. Can you advise me which probiotic to take? There are so many to choose from.

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unicorn | @unicorn | Jan 4, 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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druginfo@fda.hhs.gov I just wrote to FDA. Told them they probably have people on their staff that have mac and don't know it

REPLY
unicorn | @unicorn | 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

Hi Sharon, I'm 70 diagnosed for 5 years. We all have or are getting gerd, probably the pills fault. I also have hiatal hernia, also probably the pills fault. I think any probiotic works, I just get them at Trader Joes. xo

REPLY
boomerexpert | @boomerexpert | Jan 4, 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

Jump to this post

@unicorn love it! will use it in my email as well!

REPLY
boomerexpert | @boomerexpert | Jan 4, 2018
In reply to @jkiemen "Then we need to get one of our centers to be an investigational site." + (show)
@jkiemen

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

Jump to this post

yep!

REPLY
boomerexpert | @boomerexpert | Jan 4, 2018

@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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