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

Posted by Terri Martin, Volunteer Mentor @windwalker, Dec 2, 2017

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.

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

unicorn | @unicorn | Dec 2, 2017

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

REPLY
5 replies
pfists | @pfists | Dec 2, 2017
In reply to @unicorn "good morning everybody. If my bloodwork is acceptable, then I have been accepted into the clinical..." + (show)
@unicorn

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

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@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

REPLY
ling123 | @ling123 | Dec 2, 2017
In reply to @unicorn "good morning everybody. If my bloodwork is acceptable, then I have been accepted into the clinical..." + (show)
@unicorn

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

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

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Dec 6, 2017
In reply to @unicorn "good morning everybody. If my bloodwork is acceptable, then I have been accepted into the clinical..." + (show)
@unicorn

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

Jump to this post

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

REPLY
unicorn | @unicorn | Dec 6, 2017
In reply to @unicorn "good morning everybody. If my bloodwork is acceptable, then I have been accepted into the clinical..." + (show)
@unicorn

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

Jump to this post

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

REPLY
Jen_b | @jenblalock | Dec 7, 2017
In reply to @unicorn "good morning everybody. If my bloodwork is acceptable, then I have been accepted into the clinical..." + (show)
@unicorn

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

Jump to this post

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

REPLY
unicorn | @unicorn | Dec 16, 2017

Hello everyone" Well I got in the clinical trial for Nitric Oxide in Canada, and then out again. We have no health insurance outside the country, no medicare no blue cross. No one will sell us health insurance if you are doing a clinical trial, so that was it. Very sad and disappointed. One of the docs from the trial said he has worked with individuals before but he needs a doctor here to support him and help him with FDA and a room for 3 weeks to teach how to administer the gas. I wrote all my docs , even National Jewish in Denver and I think they all lthink it was a little crazy. Meanwhile we get worse, or take those organ crushing pills. Masschusetts General said they only use pill therapy and would not consider anything else, I said great, it doesn't work.So phooey...frustrated!!! and I know I can't spell Massachusettes...stupid indian word anyway. Hope all well xo Christa the clueless unicorn

REPLY
2 replies
pfists | @pfists | Dec 16, 2017
In reply to @unicorn "Hello everyone" Well I got in the clinical trial for Nitric Oxide in Canada, and then..." + (show)
@unicorn

Hello everyone" Well I got in the clinical trial for Nitric Oxide in Canada, and then out again. We have no health insurance outside the country, no medicare no blue cross. No one will sell us health insurance if you are doing a clinical trial, so that was it. Very sad and disappointed. One of the docs from the trial said he has worked with individuals before but he needs a doctor here to support him and help him with FDA and a room for 3 weeks to teach how to administer the gas. I wrote all my docs , even National Jewish in Denver and I think they all lthink it was a little crazy. Meanwhile we get worse, or take those organ crushing pills. Masschusetts General said they only use pill therapy and would not consider anything else, I said great, it doesn't work.So phooey...frustrated!!! and I know I can't spell Massachusettes...stupid indian word anyway. Hope all well xo Christa the clueless unicorn

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@unicorn That's too bad ...had no idea you would need medical insurance for a clinical trial.
Thought they would covere the cost and somtimes compensated the patient doing the trial.
Must be very disappointing. Lets just hope the the trial gets going as planned and has some great results.
Thanks for keeping us informed!
Shari

REPLY
Jo Ann K | @jkiemen | Dec 18, 2017
In reply to @unicorn "Hello everyone" Well I got in the clinical trial for Nitric Oxide in Canada, and then..." + (show)
@unicorn

Hello everyone" Well I got in the clinical trial for Nitric Oxide in Canada, and then out again. We have no health insurance outside the country, no medicare no blue cross. No one will sell us health insurance if you are doing a clinical trial, so that was it. Very sad and disappointed. One of the docs from the trial said he has worked with individuals before but he needs a doctor here to support him and help him with FDA and a room for 3 weeks to teach how to administer the gas. I wrote all my docs , even National Jewish in Denver and I think they all lthink it was a little crazy. Meanwhile we get worse, or take those organ crushing pills. Masschusetts General said they only use pill therapy and would not consider anything else, I said great, it doesn't work.So phooey...frustrated!!! and I know I can't spell Massachusettes...stupid indian word anyway. Hope all well xo Christa the clueless unicorn

Jump to this post

I didn't think one would have to pay either. That makes it really hard to get help. There is another company that completed a trial in Israel that was suppose to be looking to start a trial here and also another one I found last week that was going to also apply to the FDA for a trial of Nitric Oxide. They use this therapy already for patient's with Pulmonary Hypertension from what I hear. So there must be some data on how to deliver the agent safely.

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