1. < MAC & Bronchiectasis

Negative sputum results without treatment

Posted by sayaboleh @sayaboleh, May 12, 2019

Has anyone had spontaneous sputum conversion without taking the big 3? I was told recently that my latest samples produced no pathogens -- i.e. MAC organisms. That is great news of course -- I had no idea that would happen but found some studies that 40- 60% can spontaneously convert without the benefit of treatment. I was diagnosed about 8 years ago and just assumed I would always have it. I have had no symptoms other than a flare up recently when I caught a cold, hence the sputum samples to figure out what was going on. I was given a long explanation by my pulmonologist which was a little difficult to follow. Would love to hear from others if they know anything about this.
Mary

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janovr | @janovr | May 15, 2019
In reply to @sayaboleh "I was thinking that as well! I remember when I was first diagnosed and there was..." + (show)
@sayaboleh

I was thinking that as well! I remember when I was first diagnosed and there was much discussion about treating with the big 3 even though I had no symptoms. I was told that there was a risk involved with not starting treatment although it was not clear what that was! I was almost ready to go down that road again recently. It would seem that my cold was a blessing in disguise as I would never have produced any samples for testing otherwise. I still have Bronchiectasis but it is such a load off my mind not to have MAC as well.
Mary

Jump to this post

🎉🎉🎉🎉I have just received the BEST PRESENT EVER!
NO MAC IN MY LAST SPUTUM CULTURE!
Thank you Jesus for my healing as I stopped the BIG 3 MEDS, 4 years ago after only 3 months due to SEVERE SIDE EFFECTS of losing 40 lbs. in that short period of time!
Jan/Fl!

REPLY
4 replies
irene5 Irene Estes | @irene5 | May 15, 2019
In reply to @janovr "🎉🎉🎉🎉I have just received the BEST PRESENT EVER! NO MAC IN MY LAST SPUTUM CULTURE! Thank..." + (show)
@janovr

🎉🎉🎉🎉I have just received the BEST PRESENT EVER!
NO MAC IN MY LAST SPUTUM CULTURE!
Thank you Jesus for my healing as I stopped the BIG 3 MEDS, 4 years ago after only 3 months due to SEVERE SIDE EFFECTS of losing 40 lbs. in that short period of time!
Jan/Fl!

Jump to this post

Yay ! That is the best news! What a beautiful new day!

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | May 15, 2019
In reply to @janovr "🎉🎉🎉🎉I have just received the BEST PRESENT EVER! NO MAC IN MY LAST SPUTUM CULTURE! Thank..." + (show)
@janovr

🎉🎉🎉🎉I have just received the BEST PRESENT EVER!
NO MAC IN MY LAST SPUTUM CULTURE!
Thank you Jesus for my healing as I stopped the BIG 3 MEDS, 4 years ago after only 3 months due to SEVERE SIDE EFFECTS of losing 40 lbs. in that short period of time!
Jan/Fl!

Jump to this post

@janovr Woo Hoo Girlfriend!!!!! That is awesome news! Thank you for sharing that; we all need this beacon of hope. Stay well my friend.

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | May 15, 2019
In reply to @pfists "@windwalker Terri Yes I just got one a couple of weeks ago and will see my..." + (show)
@pfists

@windwalker
Terri
Yes I just got one a couple of weeks ago and will see my Pulmonologist in July for another one and a CT scan.
It was kinda low this last time but with me it's hard to tell what's what. I have asthma bronchectasis and some aspergillus showed up in last scope. I'm getting treated for the aspergillus with a anti fungal now. The asthma complicates things because I'm highly allergic to aspergillus.
With these studies on spontaneous conversion of MAC is sounds the younger and heavier you are the better.
Does anyone know any studies on people being treated for MAC with antibiotics and what percentage of those people get well and stay well?
My understanding is that it comes back a lot of the time but I'm not clear on what those percentages are.
But it is good news that around 50% spontaneously convert from MAC!
Shari

Jump to this post

@pfist and everyone else.... I feel like eventually, most of us will test positive in the future; just because that is the nature of the beast (bronchiectasis). I have tested negative for mac since 2014, but I have been on maintenance antibiotics ever since then.

REPLY
pfists | @pfists | May 15, 2019
In reply to @janovr "🎉🎉🎉🎉I have just received the BEST PRESENT EVER! NO MAC IN MY LAST SPUTUM CULTURE! Thank..." + (show)
@janovr

🎉🎉🎉🎉I have just received the BEST PRESENT EVER!
NO MAC IN MY LAST SPUTUM CULTURE!
Thank you Jesus for my healing as I stopped the BIG 3 MEDS, 4 years ago after only 3 months due to SEVERE SIDE EFFECTS of losing 40 lbs. in that short period of time!
Jan/Fl!

Jump to this post

@janovr
That's wonderful news!!!

REPLY
sayaboleh | @sayaboleh | May 15, 2019
In reply to @windwalker "@sayboleh Hi Mary. So GLAD you are mac-free!" + (show)
@windwalker

@sayboleh Hi Mary. So GLAD you are mac-free!

Jump to this post

thanks Terri. I think we could all do with some good news now and then. I will be at the NTM conference on Friday and will report back if I hear anything new and exciting.
Mary

REPLY
1 reply
marilyns | @marilyns | May 15, 2019
In reply to @janovr "🎉🎉🎉🎉I have just received the BEST PRESENT EVER! NO MAC IN MY LAST SPUTUM CULTURE! Thank..." + (show)
@janovr

🎉🎉🎉🎉I have just received the BEST PRESENT EVER!
NO MAC IN MY LAST SPUTUM CULTURE!
Thank you Jesus for my healing as I stopped the BIG 3 MEDS, 4 years ago after only 3 months due to SEVERE SIDE EFFECTS of losing 40 lbs. in that short period of time!
Jan/Fl!

Jump to this post

Congratulations! He is the great healer!

REPLY
1 reply
pfists | @pfists | May 15, 2019

Hi all
I just wanted to post this article on Mogradex
It's in the pipeline with testing being done for NTM patients to use with or without antibiotics.
It enhances your own immune system without the the toxic side effects of antibiotics.
Have any of you heard about this? It is another to keep our eyes on like the nitric oxide treatment.
Here is a link
http://boston.big3bio.com/2018/04/02/spotlight-qa-rob-neville-ceo-savara-pharmaceuticals/
Here is part of the article:

Molgradex is an inhaled formulation of recombinant human GM-CSF. GM-CSF is not an antibiotic. Rather than targeting bacteria directly, GM-CSF stimulates the innate immune system in the lungs. The attraction of this approach is that we expect it can be used both with or without antibiotics and that the mechanism will not be affected by antibiotic resistance by the bacteria.

What do study results indicate so far?

Neville: In animal studies, GM-CSF has been shown to kill NTM with similar efficacy compared to commonly used NTM antibiotics, and the simultaneous use of GM-CSF with antibiotics may further improve the antibacterial effect.

Shari

REPLY
3 replies
alleycatkate | @alleycatkate | May 15, 2019
In reply to @pfists "Hi all I just wanted to post this article on Mogradex It's in the pipeline with..." + (show)
@pfists

Hi all
I just wanted to post this article on Mogradex
It's in the pipeline with testing being done for NTM patients to use with or without antibiotics.
It enhances your own immune system without the the toxic side effects of antibiotics.
Have any of you heard about this? It is another to keep our eyes on like the nitric oxide treatment.
Here is a link
http://boston.big3bio.com/2018/04/02/spotlight-qa-rob-neville-ceo-savara-pharmaceuticals/
Here is part of the article:

Molgradex is an inhaled formulation of recombinant human GM-CSF. GM-CSF is not an antibiotic. Rather than targeting bacteria directly, GM-CSF stimulates the innate immune system in the lungs. The attraction of this approach is that we expect it can be used both with or without antibiotics and that the mechanism will not be affected by antibiotic resistance by the bacteria.

What do study results indicate so far?

Neville: In animal studies, GM-CSF has been shown to kill NTM with similar efficacy compared to commonly used NTM antibiotics, and the simultaneous use of GM-CSF with antibiotics may further improve the antibacterial effect.

Shari

Jump to this post

@pfists Shari, That is very exciting news. It sounds promising!

REPLY
heathert | @heathert | May 15, 2019
In reply to @pfists "Hi all I just wanted to post this article on Mogradex It's in the pipeline with..." + (show)
@pfists

Hi all
I just wanted to post this article on Mogradex
It's in the pipeline with testing being done for NTM patients to use with or without antibiotics.
It enhances your own immune system without the the toxic side effects of antibiotics.
Have any of you heard about this? It is another to keep our eyes on like the nitric oxide treatment.
Here is a link
http://boston.big3bio.com/2018/04/02/spotlight-qa-rob-neville-ceo-savara-pharmaceuticals/
Here is part of the article:

Molgradex is an inhaled formulation of recombinant human GM-CSF. GM-CSF is not an antibiotic. Rather than targeting bacteria directly, GM-CSF stimulates the innate immune system in the lungs. The attraction of this approach is that we expect it can be used both with or without antibiotics and that the mechanism will not be affected by antibiotic resistance by the bacteria.

What do study results indicate so far?

Neville: In animal studies, GM-CSF has been shown to kill NTM with similar efficacy compared to commonly used NTM antibiotics, and the simultaneous use of GM-CSF with antibiotics may further improve the antibacterial effect.

Shari

Jump to this post

@pfists Thanks for that info, fingers crossed!

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