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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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Jennifer | @megan123 | May 19, 2019
In reply to @sayaboleh "Still fresh from the conference which ended yesterday. It was harder than I thought it would..." + (show)
@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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1 reply
sayaboleh | @sayaboleh | May 20, 2019
In reply to @megan123 "@sayaboleh....NTM is not a reportable disease In Canada...wrong info given" + (show)
@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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sayaboleh | @sayaboleh | May 20, 2019
In reply to @poppins "Waiting and hoping some one will post info on the conference Friday," + (show)
@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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2 replies
sayaboleh | @sayaboleh | May 20, 2019
In reply to @mingsin "My CT scan show multi areas of bronchiectasis with many nodules. They are doing sensitivity test..." + (show)
@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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poppins | @poppins | May 20, 2019
In reply to @sayaboleh "@poppins Were you looking for anything specific? There were a lot of presentations and very technical..." + (show)
@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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pfists | @pfists | May 20, 2019
In reply to @sayaboleh "@poppins Were you looking for anything specific? There were a lot of presentations and very technical..." + (show)
@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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@sayaboleh
Thanks for the info on the conference.
The info on the shower heads is very helpful. I was just wondering if I should use a filter with the new shower head I got from Shower Clear. You can get filters for your shower to filter out chlorine especially because the chlorine in water is bad on your lungs. I guess according to the conference information all filters are not good then? Is that including water filters?
Shari

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2 replies
annya | @annya | May 20, 2019

In Decemeber 2017 I was diagnosed with MAC after a bronchoscopy. I had two more positive specimens with positive MAC diagnosis in January, February. Then in June my doctor told me that the April 2018 specimen was negative and it has been continuously negative since that time. I had no drugs for the MAC. I was using herbs like NAC, Glutithione, Turmeric, and Colloidial Silver. I was so shocked and still am. I just thought I would share this miracle with you since you had this conversation going.

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1 reply
pfists | @pfists | May 20, 2019
In reply to @annya "In Decemeber 2017 I was diagnosed with MAC after a bronchoscopy. I had two more positive..." + (show)
@annya

In Decemeber 2017 I was diagnosed with MAC after a bronchoscopy. I had two more positive specimens with positive MAC diagnosis in January, February. Then in June my doctor told me that the April 2018 specimen was negative and it has been continuously negative since that time. I had no drugs for the MAC. I was using herbs like NAC, Glutithione, Turmeric, and Colloidial Silver. I was so shocked and still am. I just thought I would share this miracle with you since you had this conversation going.

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@annya
That's great!!
My story is similar to yours I went from over a year of positive tests to negative without drugs.
I also use colloidal silver and NAC and some other herbs I found out about from the book Herbal Antibiotics by Stephen Buhner.
Good to hear others have the same experience.
Shari

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1 reply
Flib | @flib | May 20, 2019
In reply to @alleycatkate "Just saw this article on the positive effects of NAC on bronchiectasis. I have taken this..." + (show)
@alleycatkate

Just saw this article on the positive effects of NAC on bronchiectasis. I have taken this supplement for several years and seems helpful. https://bronchiectasisnewstoday.com/2019/05/09/n-acetylcysteine-potentially-beneficial-bronchiectasis-patients/

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@alleycat thanks for the NAC tip. I have a bottle sitting around with other bottles of who knows what. I'm going to open it up and start using it.Flib

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annya | @annya | May 20, 2019

I have a Big Berkey Water system and got the shower head for the shower to protect my lungs from airborne germs. I like both of them. You can learn about them on youtube.

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