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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Apr 14 3:02pm | Replies (9325)Comment receiving replies
Hi all good news re : Nitric Oxide Treatment, I got a reply from my email to them, here it is:
Thanks for your email. AIT is moving as quickly as possible to provide our nitric oxide treatment for NTM patients. At this time we are conducting a phase 2 trial in Israel. We hope to begin a phase 3 trial in the United States in 2018 that will lead to US FDA approval. We have a lot of work to do and all of the employees are dedicated to succeed. I will add you to our email list so that you will be up to date on our progress.
I will forward any updates I get onto this site. So amazing that they are able to work so fast with such a promising treatment.
Heather 🙂
Replies to "Hi all good news re : Nitric Oxide Treatment, I got a reply from my email..."
@heathert , Hi Heather, just curious; what affiliation sent you this e-mail? WHO is doing this research? Thanks!
@heathert Heather, please disregard that last reply of mine. I did see where you got your info. That sounds very encouraging. I am praying for new, effective treatments to be released in 2018. We cannot afford to wait.
@heathert , it would be nice to know which countries ahead of us gets approval. That way; we can go to that country and get the treatment if our own takes too long to pass it through the FDA.
Very True @windwalker, hopefully the FDA will speed up approval, as there is such a need.
Is someone using inhaling saline, do you cough? I got back from NJH and saw Dr. Huitt. she took me off the 4 meds. got me do the aerobka. They did the sputum culture and she said it will take 6 to 8 weeks. Both my lungs have bronchiectasis. Cila
@cila, Hello Cila, I have been doing the inhaled saline for two years now. I do not cough, but that is due to an antibiotic that got rid of my pseudomonas. It apparently killed everything else that caused me to cough violently for the last 12 years also. I feel like all of us with these lung health issues should be on the saline. It is good lung hygeine. Are you doing the saline now?
Hello Terr M, yes I'm dong the saline and the Aerobika. I do 2x a day salne and 3x a day Aerobika. Dr. Huitt took me off the 4 antibiotic second day I was there. My sputum culture will not be ready until 6 to 8 weeks she said. It seems I feel much better since I stop the big 4. I hope I don't have to take them again. How many times you do the saline? Do you have Bronchectasis? About Aerobika do you use it? I also have bad acid reflux and she wants me to learned to control the aspiration into my lungs. Terri, don't get tred of my many questons pls. Thank you so much! Cila
To all of you?
Video deglutition today reveals I am doing aspiration whwn I drink. Does everyone do aspiration into your lungs???? Is this part of the bronchetasis ?
Hi nick52, I'm doing aspiration when I drink. They told me I have to sip a little bit of liquid instead of drinking. I have bronchiectasis. Cila.
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Thanks very much for doing this on our behalf, H!