Negative sputum results without treatment

Posted by sayaboleh @sayaboleh, Sun, May 12 10:51am

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

Liked by heathert

@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

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@pfists Thank you posting this Shari. This does sound promising, lets pray it works!

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@sayaboleh

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

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@sayaboleh Hi Mary. That is great that you are going to the NTM conference this year. Another member, @deborahwolf, is also going to be there. You two should try to meet up while you are there. I hope you gals come back with some new info and update us on what might be coming down the pipeline.

Liked by sounder27

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@marilyns

Congratulations! He is the great healer!

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@marilyns AMEN!

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Waiting and hoping some one will post info on the conference Friday,

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My CT scan show multi areas of bronchiectasis with many nodules. They are doing sensitivity test to determine what med to give to me. I didn't have much symptoms until recent pneumonia. Now I hear wheezing sound when I breath and I am just so tired making it difficult for me to work 5 days. Reduced the work days to 4 days a week. Wondering if it would be better to take early retirement at 62 to focus on my health.

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@poppins

Waiting and hoping some one will post info on the conference Friday,

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@poppins Hi. We have two members that I know of that are at the conference. They said they would check back with us and share what they learned.

Liked by heathert

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@mingsin

My CT scan show multi areas of bronchiectasis with many nodules. They are doing sensitivity test to determine what med to give to me. I didn't have much symptoms until recent pneumonia. Now I hear wheezing sound when I breath and I am just so tired making it difficult for me to work 5 days. Reduced the work days to 4 days a week. Wondering if it would be better to take early retirement at 62 to focus on my health.

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@mingsin Hi there, and welcome to our group. Is this your first diagnosis or experience with lung issues? How are you feeling? (I know tired, anything else?)

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@mingsin

My CT scan show multi areas of bronchiectasis with many nodules. They are doing sensitivity test to determine what med to give to me. I didn't have much symptoms until recent pneumonia. Now I hear wheezing sound when I breath and I am just so tired making it difficult for me to work 5 days. Reduced the work days to 4 days a week. Wondering if it would be better to take early retirement at 62 to focus on my health.

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@mingsin To try and answer your question about continuing to work….that would depend on how you feel and can you afford to? Also, would it be better to mentally be work focused, for some, it is. I went on disability when I was in my late 40's. For me, working while being severely fatigued just made me sicker and sicker. My husband retired at age 57 and began collecting his SS at 62. He could afford to and has investment properties and invests in the stock market. He did the numbers and he found he came out ahead retiring at 62. Not everyone has the financial cushion he has that would make that a beneficial option. You may find at some point that you have no option but to retire and collect your SS. I hope that is not the case for you, but, you should make future plans for that in case that comes to pass. The bottom line is, your body will tell you when enough is enough. When I went on disability it was the best thing I could have done for myself. I am pretty sure I am doing as well as I am now because of it. It freed up time for me to take trips to the Mayo Clinic which greatly improved my health. It eliminated work-related stress. It allowed me to rest more instead of constantly pushing forward when I had no energy. I was fortunate in that I inherited a home that I made a rental and that supplements my SS. If there is any way you can boost your passive income, it would be a good idea. I hope this has helped you in some way. Please keep me posted on what you do.

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@mingsin
@windwalker
Those are really good ideas from Terri.
The only things I could add is
If you just got over pneumonia it can take al quite awhile to get your energy back and maybe you will feel more energy down the road.
Also quite awhile ago I went on Social Security disability because my RA affected me so bad. But I was allowed through SS Disability to continue working at reduced work days I worked 15-20 hours a week at the same place I was working and collected SSDI. Since then I did eventually have to just quit my job because of lung complications.
You would have to see if you qualify for SSDI. There is a lot of paper work and it takes awhile but this may be an option for you depending on you qualifying and and your job allowing even less hours.
Best to you!
Shari

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@windwalker

@sayaboleh Hi Mary. That is great that you are going to the NTM conference this year. Another member, @deborahwolf, is also going to be there. You two should try to meet up while you are there. I hope you gals come back with some new info and update us on what might be coming down the pipeline.

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Still fresh from the conference which ended yesterday. It was harder than I thought it would be to find Deborah since I didn’t know what she looked like? Also there was a lot of folks! Dr. Huit pointed that out.. The first meeting she went to in 1994 had only 20. I’ll try and post some initial thoughts. It was quite intense and very technical in part. Overall I don’t think there were any major developments reported except perhaps for some work being done on phages. Apparently the medical world was quite excited about a 15 year old girl in England who had a lot of complications from a double lung transplant and recovered rather miraculously through the use of phages developed specifically for her. This happened a few weeks ago and was the first successful such use to treat NTM. I thought that was the most promising albeit challenging and very early.
A speaker from Toronto mentioned that NTM is a ‘reportable’ disease in Canada and someone in the audience questioned why it isn’t in the US. Does anyone know anything about what that means? I’m not clear about the ramifications. I heard about a research registry; wouldn’t that do the same while maintaining privacy?
Will post more when I get home or at the airport if my flight gets delayed due to the storm blowing through Dallas!
Mary

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@sayaboleh

Still fresh from the conference which ended yesterday. It was harder than I thought it would be to find Deborah since I didn’t know what she looked like? Also there was a lot of folks! Dr. Huit pointed that out.. The first meeting she went to in 1994 had only 20. I’ll try and post some initial thoughts. It was quite intense and very technical in part. Overall I don’t think there were any major developments reported except perhaps for some work being done on phages. Apparently the medical world was quite excited about a 15 year old girl in England who had a lot of complications from a double lung transplant and recovered rather miraculously through the use of phages developed specifically for her. This happened a few weeks ago and was the first successful such use to treat NTM. I thought that was the most promising albeit challenging and very early.
A speaker from Toronto mentioned that NTM is a ‘reportable’ disease in Canada and someone in the audience questioned why it isn’t in the US. Does anyone know anything about what that means? I’m not clear about the ramifications. I heard about a research registry; wouldn’t that do the same while maintaining privacy?
Will post more when I get home or at the airport if my flight gets delayed due to the storm blowing through Dallas!
Mary

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@sayaboleh….NTM is not a reportable disease In Canada…wrong info given

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@megan123

@sayaboleh….NTM is not a reportable disease In Canada…wrong info given

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You're right. I must have misheard. Dr. Aksamit did clarify that it is indeed 'reportable' in 11 states in the US but not well! This article from NJH names them and provides more background on public health implications.
https://www.nationaljewish.org/NJH/media/pdf/NTM-TB-INSIGHTS-November-2016.pdf

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@poppins

Waiting and hoping some one will post info on the conference Friday,

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@poppins Were you looking for anything specific? There were a lot of presentations and very technical and detailed info as well. I am trying to sort through my notes. there were some sessions I found more interesting than others. I found the presentation by Dr. Koh of S. Korea quite fascinating — suggestions that East Asians are way more susceptible than Europeans and N. Americans. Dr. Thomson from Australia presented some info on the dangers of shower heads (or not), which I thought was very relevant. She advised against using filters of any kind! Unless the filters are changed every 2 weeks. She recommends replacing plastic with metal shower heads and to soak heads in vinegar for 60 minutes every 6 months at minimum. She cited a study done in 2006 (easy to find I'm sure) of environmental risk factors. Dr. Aksamit mentioned a spontaneous negative conversion rate of 10-15% and I suspect that comes from drug trials where there are control groups. I did speak to Dr. Koh about that since the studies showing much higher rates have come from S. Korea. He acknowledged that with exercise and good diet, etc. that there is a much higher chance of that happening.
Mary

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@mingsin

My CT scan show multi areas of bronchiectasis with many nodules. They are doing sensitivity test to determine what med to give to me. I didn't have much symptoms until recent pneumonia. Now I hear wheezing sound when I breath and I am just so tired making it difficult for me to work 5 days. Reduced the work days to 4 days a week. Wondering if it would be better to take early retirement at 62 to focus on my health.

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@mingsin I'm sorry to hear about your diagnosis and your recent pneumonia. I know it must be hard to deal with and have a full-time job. I can speak to my own experience and maybe that would help. I agree with Terri of course. It is a very personal decision. I quit my job 3 years ago for reasons other than health – just did not like it any more and had a very disagreeable boss! I do have a myriad health issues and they all come to bear 6 months later.The next two years were spent traipsing back and forth to the hospital for multiple surgeries and procedures unrelated to MAC/bronchietasis. My husband left his job about the same time too and we were both very thankful that we could afford to do so to focus exclusively on my health and recovery. It would have been very hard and had I still had a job I would have gone on disability. Is there a way to cut back your hours even more or even take a short leave of absence? There is a chance you might feel better later. If your finances permit and you have good retirement benefits (health insurance is an issue if you don't qualify for Medicare although Obamacare is a great alternative) then early retirement might make sense. My health is a lot better now and I am really enjoying not working.
All the best.. Mary

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@sayaboleh

@poppins Were you looking for anything specific? There were a lot of presentations and very technical and detailed info as well. I am trying to sort through my notes. there were some sessions I found more interesting than others. I found the presentation by Dr. Koh of S. Korea quite fascinating — suggestions that East Asians are way more susceptible than Europeans and N. Americans. Dr. Thomson from Australia presented some info on the dangers of shower heads (or not), which I thought was very relevant. She advised against using filters of any kind! Unless the filters are changed every 2 weeks. She recommends replacing plastic with metal shower heads and to soak heads in vinegar for 60 minutes every 6 months at minimum. She cited a study done in 2006 (easy to find I'm sure) of environmental risk factors. Dr. Aksamit mentioned a spontaneous negative conversion rate of 10-15% and I suspect that comes from drug trials where there are control groups. I did speak to Dr. Koh about that since the studies showing much higher rates have come from S. Korea. He acknowledged that with exercise and good diet, etc. that there is a much higher chance of that happening.
Mary

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Thank you for the information.

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