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Fri, May 3 9:28am · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@pfists @jkiemen @heathert @windwalker Thanks for following up on this Shari. We could have guessed as much from their website — they seem to want to focus mostly on active cystic fibrosis.
Fairly similar numbers of people are diagnosed with NTMs each year compared to the numbers diagnosed with active cystic fibrosis. But those with active cystic fibrosis are diagnosed far younger, often as children. (NTMs are regarded as ONLY an 'old people's disease', although that isn't true — 50% are younger than 65 and some are children).
There's been research around for 15 years that NO can reduce pseudomonas aeruginosa, but Vast has a new and better delivery system to try out.
The Vast Therapeutics study we looked at showed success with NTMs (https://cysticfibrosisnewstoday.com/2018/05/24/vast-therapeutics-bioc51-fares-well-mouse-studies/ or https://www.prnewswire.com/news-releases/vast-therapeutics-formerly-novoclem-announces-results-showing-eradication-of-all-in-vitro-tested-multi-drug-resistant-bacteria-and-a-99-reduction-of-nontuberculous-mycobacteria-ntm-in-animal-model-300652648.html).
Past methods for inhalation of ordinary NO gas didn't work to get rid of NTMs or TB, but this new controlled release system Vast has developed does seem to be effective with NTMs.
It's a shame that people with NTMs haven't got the political clout to lobby drug companies to promptly pursue successful research results for NTMs. I wish there was something we could all do about that!!!
Anyway, there seems to be another study with NO for people with NTMs underway at University of South Carolina in 2018-2019, although it's not clear if they're using the new controlled release systems or not: 'A Proof of Concept Study of Inhaled Nitric Oxide for Adults With Pulmonary Non-Tuberculous Mycobacterial Infection' — https://clinicaltrials.gov/ct2/show/NCT03748992 . (Principal Investigator: Patrick Flume, Medical University of South Carolina). Does anyone know anything about this trial?

Sat, Apr 27 11:11pm · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@heathert @spencersok @jkiemen @pfists @windwalker Yes I hope this works well and they can bring it to the market as soon as possible — I am praying for this to help us all

Wed, Apr 24 9:56pm · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@jkiemen Thanks SO much Jo Ann! This looks really interesting — it could be a good option, either as an alternative treatment or an adjunct to other drugs for difficult NTM bugs. And I hope it might also potentially be a good intermittent treatment or preventer in the future. Hugs and all the best, Annie

Thu, Apr 18 2:47am · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@becky33 That is really wonderful Becky. And I agree you are a real inspiration to us all! (Please now do everything you can to improve your immune system. After we finish the antibiotics, the research shows there is increased risk for up to 2 years. So I suggest taking a good broad spectrum probiotoc and inulin powder as a prebiotic every day — you can order these online. And take up to 4000 iu per day of vitamin D3. Both of these help the innate immune system of older people). Hugs and the best of luck, Annie

Tue, Apr 16 8:04pm · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

I wish all of you have a safe and well Easter

Wed, Mar 27 9:15pm · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@phyllistamara Good luck — many of us are in there together with you.

Mon, Mar 4 12:33am · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@hsletter Hi Helen — this forum site automatically goes to the OLDEST message when you sign in. To get the latest 2019 threads in this forum go to the bottom of the 2011 message from @katemn on the front page. On the left side you will see the page numbers. On the right side you will see a box with | oldest to newest | in it. Use the small down arrow in this box to select | newest to oldest | instead. The recent posts will all come up then — your recent post along with recent messages from other people.
Good luck with your treatment. You are right, the longer people with coughing and phlegm symptoms leave this illness untreated the worse it usually gets (as that study showed — 95% of cases!). So, in my experience anyway, it's best to get onto the treatment as early as possible. The antibiotics do have risks, and do need to be monitored, but most of the common side effects can be managed. I agree it's essential to take a strong broad spectrum probiotic every day, but to work properly it needs to be taken with high fibre powder such as Inulin powder — you can order this online. We also need to continue with strong probiotics even after we finish the 1 or 2 years of antibiotics to help our weak immune systems. Again, all the best to you, Annie