1. < MAC & Bronchiectasis
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WOW!!

Posted by clynnford @clynnford, Feb 17 12:44pm

I am shocked, stunned and overwhelmed with my latest sputum report!!
NO MAC PRESENT!!!!
No Rx treatment ever, I am a bit skeptic... but I want to believe.
Same sputum came back representative of lower respiratory tract with scant Pseudomonas aeruginosa and....
NO Mycobacterium species isolated after 6 weeks incubation!!
Bronchiectasis remains according to the CT scan.

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

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Mentor
Sue, Volunteer Mentor | @sueinmn | Feb 21 9:53pm
In reply to @gigiv "@narelled23, no I do not. But when I see my pulmo next month, I am going..." + (show)
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@narelled23, no I do not. But when I see my pulmo next month, I am going to ask him very pointedly. Hekeeps up with research. I know scientists are working on it, I am just not sure how reliable it is right now. I can be patient. I want something that works well and that has been established as safe.
Best wishes of great health to all of us!

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@gigiv As of today, I have only identified on Phase 1 clinical study that enrolled 10 people. The study iss supposed to end this summer, so look for a report around the end of the year.

The American Lung Association has issued the following caution:
https://www.lung.org/lung-health-diseases/wellness/public-health-issues-lung-health/stem-cell-therapy

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2 replies
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irenea8 | @irenea8 | Feb 22 7:29am
In reply to @gigiv "@clynnford, you nebbed 3 years, that's very good. However, I have been nebbing 7% for less..." + (show)
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@clynnford, you nebbed 3 years, that's very good. However, I have been nebbing 7% for less than a year (will be 1 year mid-April), before that 14 months on 3%. That seems really short to me. It probably means that if I were to give more samples in the months to come, they might show Pseudos and NTMs. So, I am in no rush of doing so. My pulmo had told me in October my lungs sounded really good and that I could stop nebbing 7%. I told him no, absolutely not and he smiled. Anyway, I feel empowered that I had that sample free of beasties, but I am not naive and I am fully aware it will always be an ongoing battle.To be completely honest, it's probably not only the 7%, most likely the Airocide (NASA technology) air filters and the 2mm water filters play a big part in reducing my exposure. And my commitment to exercise most likely plays a part. A lot of work goes into it. I also do red light therapy, maybe it helps, maybe not. But I will continue with all of the above. My goal is to one day have stem cell therapy on my lungs to reverse bronchiectasis (I firmly believe it will be available and effective at some point), to quality for that I will probably need to have zero pseudo and zero NTM, so thatmotivates me to keep on fighting the good fight.
Best wishes of great health to all of us!

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@gigiv
how do you use the red light therapy for your lungs?

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1 reply
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gigiv | @gigiv | Feb 22 8:34am
In reply to @irenea8 "@gigiv how do you use the red light therapy for your lungs?" + (show)
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@gigiv
how do you use the red light therapy for your lungs?

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@irenea8, I expose my chest to a FDA approved red light panel (red light and infrared light) 3 times a week for a few minutes front and back. When I started using it, I felt it was really helping, I felt it made me turn a corner. Maybe it was placebo effect. Some physicians in Europe believe it will completely revolutionize medicine, others don't give it much credit. I use it cautiously. But again, we are all different. I cannot prove that it helped. Again, it could all be placebo. Or not. I don't use it for a long time. At first, I was using it for a little bit longer, now I just do 2 minutes front and 2 minutes back.
Best wishes of great health to all of us!

REPLY
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gigiv | @gigiv | Feb 22 8:38am
In reply to @sueinmn "@gigiv As of today, I have only identified on Phase 1 clinical study that enrolled 10..." + (show)
Profile picture for Sue, Volunteer Mentor @sueinmn

@gigiv As of today, I have only identified on Phase 1 clinical study that enrolled 10 people. The study iss supposed to end this summer, so look for a report around the end of the year.

The American Lung Association has issued the following caution:
https://www.lung.org/lung-health-diseases/wellness/public-health-issues-lung-health/stem-cell-therapy

Jump to this post

@sueinmn, this is why I said " I can be patient. I want something that works well and that has been established as safe." Meanwhile, it gives me hope and motivates me, and that's super important.
Best wishes of great health to all of us!

REPLY
Profile picture for narelled23
narelled23 | @narelled23 | Feb 28 7:14pm
In reply to @sueinmn "@gigiv As of today, I have only identified on Phase 1 clinical study that enrolled 10..." + (show)
Profile picture for Sue, Volunteer Mentor @sueinmn

@gigiv As of today, I have only identified on Phase 1 clinical study that enrolled 10 people. The study iss supposed to end this summer, so look for a report around the end of the year.

The American Lung Association has issued the following caution:
https://www.lung.org/lung-health-diseases/wellness/public-health-issues-lung-health/stem-cell-therapy

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@sueinmn

Thank you, Sue. 🙏

REPLY
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narelled23 | @narelled23 | Feb 28 7:16pm
In reply to @gigiv "@narelled23, no I do not. But when I see my pulmo next month, I am going..." + (show)
Profile picture for gigiv @gigiv

@narelled23, no I do not. But when I see my pulmo next month, I am going to ask him very pointedly. Hekeeps up with research. I know scientists are working on it, I am just not sure how reliable it is right now. I can be patient. I want something that works well and that has been established as safe.
Best wishes of great health to all of us!

Jump to this post

@gigiv
Very best health to you, too. 🙏

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