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

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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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@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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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

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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@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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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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I've been taking 600mg of NAC (Jarrow N-A-C Sustain) twice a day for about 5 months now or my MAC without starting antibiotic treat yet.. It took a couple of months, but I went from debilitating coughing all day to hardly coughing even lightly now. I don't know how that affects my MAC count, but I feel so much better. Here's a recent study, published in April 2019 about how NAC has been shown to help for bronchiectasis and may disrupt the biofilms in MAC: https://respiratory-research.biomedcentral.com/articles/10.1186/s12931-019-1042-x. I also take one tablet of apo-Lactoferrin (by Life Extension) each evening to kill the MAC. I try and take the NAC on an empty stomach with a little bit of pink grapefruit juice. I don't know if the grapefruit juice increase the effect or not.

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@pfists

@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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@deborahwolf Hi Deb! How was the conference? Do you have anything to share about it?

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@pfists

@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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Hi Shari — I have posted the slide on the use of filters — the speaker was referring to water filters and she claims that they are bad if you are susceptible to MAC. Having said that I was at a support group yesterday and I brought this up. As it turns out there was an engineer in the group who disputed this. I have never used water filters of any kind and don't plan on doing so. However, I think it does give one pause, given the ubiquity of these products. The manufacturers claim that they filter out 99.9% of bacteria and as the speaker said, the .1% is the mycobacteria. I have not heard of chlorine being bad and that using a filter there would help. The speaker did not mention that. I think it prudent to avoid things known to be bad for us — hot tubs, humidifiers, street misters, indoor pools etc. I take very quick showers now and try to keep everything ventilated. I may soak the shower head in vinegar one of these days. I guess it all comes down to how much you are willing to change your life and how much of a burden it is to institute those changes.
Mary

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@pfists

@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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@annya @eileent
That is so great to hear. I wish there was more research on these products and other lifestyle factors that may help convert us to negative and keep us that way. Someone mentioned at the conference that there was really no data to back up the effectiveness of airway clearance devices… Isn't that strange? Reminds me of the stories from a few years back that there was really no research data to back up the effectiveness of daily flossing! And yet, dentists and the like keep asking you to do that. Mary

Liked by Brenda R.

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@sayaboleh

Hi Shari — I have posted the slide on the use of filters — the speaker was referring to water filters and she claims that they are bad if you are susceptible to MAC. Having said that I was at a support group yesterday and I brought this up. As it turns out there was an engineer in the group who disputed this. I have never used water filters of any kind and don't plan on doing so. However, I think it does give one pause, given the ubiquity of these products. The manufacturers claim that they filter out 99.9% of bacteria and as the speaker said, the .1% is the mycobacteria. I have not heard of chlorine being bad and that using a filter there would help. The speaker did not mention that. I think it prudent to avoid things known to be bad for us — hot tubs, humidifiers, street misters, indoor pools etc. I take very quick showers now and try to keep everything ventilated. I may soak the shower head in vinegar one of these days. I guess it all comes down to how much you are willing to change your life and how much of a burden it is to institute those changes.
Mary

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@sayaboleh Hi Mary, I enjoy and appreciate your insightful comments, thank you. You were at the conference, correct? Can you tell me was there any discussion of soft tissue/skin NTM infections?

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@sayaboleh

Hi Shari — I have posted the slide on the use of filters — the speaker was referring to water filters and she claims that they are bad if you are susceptible to MAC. Having said that I was at a support group yesterday and I brought this up. As it turns out there was an engineer in the group who disputed this. I have never used water filters of any kind and don't plan on doing so. However, I think it does give one pause, given the ubiquity of these products. The manufacturers claim that they filter out 99.9% of bacteria and as the speaker said, the .1% is the mycobacteria. I have not heard of chlorine being bad and that using a filter there would help. The speaker did not mention that. I think it prudent to avoid things known to be bad for us — hot tubs, humidifiers, street misters, indoor pools etc. I take very quick showers now and try to keep everything ventilated. I may soak the shower head in vinegar one of these days. I guess it all comes down to how much you are willing to change your life and how much of a burden it is to institute those changes.
Mary

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@sayaboleh
Mary
Thanks for info on water filters!
For now I will not put up the shower filter up to remove the chlorine.
I guess I will keep taking short ventilated showers like you. I know I am super sensitive to chlorine smell or any chemicals or scents for that matter. I do have asthma also and can feel my lungs react negative to them.
I do drink spring water as I heard that's better than filtered water.
I will watch for the conference to be put on YouTube. I guess I heard it will take a couple of weeks to edit it.

Shari

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@sayaboleh

@annya @eileent
That is so great to hear. I wish there was more research on these products and other lifestyle factors that may help convert us to negative and keep us that way. Someone mentioned at the conference that there was really no data to back up the effectiveness of airway clearance devices… Isn't that strange? Reminds me of the stories from a few years back that there was really no research data to back up the effectiveness of daily flossing! And yet, dentists and the like keep asking you to do that. Mary

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There is research on air clearance devices like the Smartvest. It shakes the mucus lose. It decreases hospital visits and exacerbations.

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@annya

There is research on air clearance devices like the Smartvest. It shakes the mucus lose. It decreases hospital visits and exacerbations.

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@annya Yes. There were 3 different versions at the conference, one of which (afflovest?) had a compressor built-in. I actually tried the Smartvest at the support group meeting a few days ago which was provided by the sales rep. I am not sure that it does anything for me although it works for a lot of folks. I don't think the doctors at the conference were saying not to use them — on the contrary. Just that there was very little data to support their effectiveness. They also do not recommend any particular one over the other, except to experiment and see what works for you. I find the nebulizer and 7% works quite well for me provided there is mucus — I suspect I have very little. The Aerobika doesn't really do much for me either. Interestingly, one of the participants in the support group said her pulmonologist at National Jewish told her she did not really need the vest since she is so active. I feel that if you know you have mucus and has trouble getting it out and have not tried the vest — it is worth investigating and trying it out. –Mary

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@pfists Shari — I forgot one other thing the engineer said about shower heads. He does a monthly hot water routine — turn the tap on as hot as possible and let it run for 10 – 30 minutes (very unscientific!) I know that Mycobacteria is killed by 140 deg. water so maybe it works. Apparently he has not any any reinfection and he claims that doing that does the trick. The Australian speaker also advises letting your taps run at very hot temperatures for about 5 minutes before using for the day — to clear out overnight stagnation. Even longer if you have not turned on your water for a long time. I'm afraid I'm not too good at remembering to do any of this. Mary

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@brigby

@sayaboleh Hi Mary, I enjoy and appreciate your insightful comments, thank you. You were at the conference, correct? Can you tell me was there any discussion of soft tissue/skin NTM infections?

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@brigby Thanks for your kind words! Yes I was at the conference. And no I did not hear any discussion about skin infections other than anecdotal mentions of rashes which may be antibiotic side effects.Mary

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