← Return to (MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

Discussion
Comment receiving replies
@pfists

@windwalker888
Hi Terri
I went to the website for the Nitric Oxide study being done and they concluded another small study that was very encouraging for us with NTB. They are now doing one more 10 person study.
One person went 7000 to 500 colonizing NTM
The other person went to 0 colonizing NTM. That was in just three weeks time.
Let all hope and pray that this option becomes available to our community here!

Here is a link
https://globenewswire.com/news-release/2017/09/13/1120291/0/en/AIT-Therapeutics-Adjuvant-Nitric-Oxide-Treatment-Shown-to-be-Safe-and-Effective-in-the-Compassionate-Use-Setting-in-Cystic-Fibrosis-Patients-with-Non-tuberculous-Mycobacteria-NTM-I.html

Jump to this post


Replies to "@windwalker888 Hi Terri I went to the website for the Nitric Oxide study being done and..."

Hopefully this will be useful for people with MAC. This seems to be much less intensive than the Big 3 antibiotic treatment, and perhaps, even more successful.

Glad to see an entity in the US is taking this up...research on it has been ongoing for years in the UK.

Wow seriously?
We in the US seem to be always behind the eight ball in these sort of things.
Europe is non GMO, non mercury in filling ect.

@pfists, Thank you, Shari. Lets keep our fingers crossed!

Hi all,
I thought I'd bring back the discussion @boomerexpert started a while ago about advocating for research. Please see:

- NTM/MAC/MAI: We must advocate for ourselves https://connect.mayoclinic.org/discussion/we-must-advocate-for-ourselves/

 

 

That is perfect. I will certainly start doing more advocation. Maybe I will start with the CDC.

Jo Ann K

 

@colleenyoung , Colleen, that is absolutely what we all should be focusing on right now. We have kicked the can around enough about the disease. We all need to DO something about it! How many of you have visited the http://www.NTMinfo.org?

Reminder to all: I started this thread last year for the express purpose of organizing advocacy https://connect.mayoclinic.org/discussion/we-must-advocate-for-ourselves/