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Great source for MAC (NTM) information is,,,,

Posted by @windwalker, Sat, Dec 2 7:20am

Good morning everyone. I have just spent the last hour and a half on a site called: Pubmed.gov. It is a great place to look up all things MAC or any other medical issue. I could spend DAYS on there! I learned that Japan has the highest incidence of MAC in the world. They are extremely cutting edge people so I was hoping that they might have answers for better treatment. I will keep digging. One thing I did read concerning Japan’s epidemic of MAC; is they are very concerned at the lack of attention to this disease in the research departments. We ALL should be concerned about this.

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unicorn
@unicorn

Posts: 87
Joined: Jun 10, 2017
Posted by @unicorn, Sat, Dec 2 8:53am

good morning everybody. If my bloodwork is acceptable, then I have been accepted into the clinical trial up in Canada . They use nitric acid inhalant one hour 3 times a day to combat the bacteria. They only took 10 people and I am paying my own way, but worth it! It lasts 3 weeks. I will keep you posted as to progress or problems. From Malibu to Vancouver in January, brrrr! Hopefully this will become available to all soon if it works. Wish me luck!! xoxo

pfists
@pfists

Posts: 54
Joined: Dec 27, 2016
Posted by @pfists, Sat, Dec 2 9:47am

@unicorn
Wow that is great news to be one of ten people accepted into the study! We will be waiting to hear about all the details, do keep us posted.
I would be interested in knowing if it goes well and nitric oxide is opened up to Mac patients here in the US how it would be administered. Would you be able to bring the system home and administer it or would you go to the hospital or clinic three times a day for treatments. It would be a bit problematic to go in the times a day for teatments for many. If you could find that out let us know.
Best of luck to you!!!
Shari

ling123
@ling123

Posts: 157
Joined: Apr 06, 2017
Posted by @ling123, Sat, Dec 2 2:06pm

@unicorn Good luck. Can’t wait to hear about your experience.

Posted by @windwalker, 6 days ago

@unicorn Hi Christa. You are such a pioneer. Please do keep us posted on that treatment. Hugs!

unicorn
@unicorn

Posts: 87
Joined: Jun 10, 2017
Posted by @unicorn, 6 days ago

Hi terri, thank you! i am not actually in yet but he just wrote me and said he would review all and chat with colleagues and let me know. Someone askkd what the treatment entails, it is breathing nitric oxide for an hour, then 2 hour break, then breath another hour, then another 2 hour break, then breath for a final hour, 3 total in a day. This goes on for 3 weeks m-f, fun fun fun. On weekends I can shop!!
He said I might be good because most participants are late stage and I am not quite, so hopefully,,,,xoxo

Jen_b
@jenblalock

Posts: 104
Joined: Jan 02, 2017
Posted by @jenblalock, 6 days ago

Good luck! I hope this does the trick for you and I’m excited to read your updates.

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