Is there research on disrupting the MAC biofilms that hide/protect MAC

Posted by cate123456 @cate123456, Sep 9 11:36am

MAC is so difficult to treat because it can hide in the protective biofilm it creates. I have many friends dealing with Lyme disease and it's co-infections who have to go to Lyme specialist doctors. Many of these doctors address the biofilms that hide the Lyme. Here is a good article by one of the M.D.s who specializes in Lyme and deals with the biofilm problem. Not sure if these would also work on the MAC biofilms.
i can't find any research or article on "disrupting" MAC biofilms. I wonder if Lyme biofilms are made of same stuff as MAC biofilms.

Anyone had a doctor talk or deal with the biofilm problem?
https://www.treatlyme.net/guide/lyme-disease-biofilms

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

@cate123456 This is a very interesting question. I am listening to the Medical University of South Carolina NTM Patient conference as I type this. The medical researcher was just addressing this issue. Specifically, they are trying to develop "phages" that can deactivate each specific mycobacteria. It is turning out to be more difficult that originally assumed because they have found thousands genetic variations in the bacteria, each of which requires its own phage.

As we often say, "stay tuned for further developments."
Sue
PS We will provide a link to the recording when it is available.

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Sue,
Yes the whole phage research is very intriguing. I’ve been in touch w Dr Hatful at U Penn who is doing much of the research to see if I could send my MAC in for a phage matchup as Dr Falkinham has sent all the Virginia MAC phages they’ve found to him. But it looked too complicated to do right now.

UCSan Diego actually has established a whole Phage library of the various phages to be used in the future for NTM. But I believe right now they aren’t even doing any phage trials. Grrrr….
Or did you hear differently today ??L

Have you read the story of the one guy that was almost dying w lung disease and they saved him with phage IV therapy.? If not, I’ll find the article for you.
It’s very exciting and makes sense as the best way to treat NTMs.

Did they discuss the biofilm problem?
Thanks

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@cate123456

Sue,
Yes the whole phage research is very intriguing. I’ve been in touch w Dr Hatful at U Penn who is doing much of the research to see if I could send my MAC in for a phage matchup as Dr Falkinham has sent all the Virginia MAC phages they’ve found to him. But it looked too complicated to do right now.

UCSan Diego actually has established a whole Phage library of the various phages to be used in the future for NTM. But I believe right now they aren’t even doing any phage trials. Grrrr….
Or did you hear differently today ??L

Have you read the story of the one guy that was almost dying w lung disease and they saved him with phage IV therapy.? If not, I’ll find the article for you.
It’s very exciting and makes sense as the best way to treat NTMs.

Did they discuss the biofilm problem?
Thanks

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There was a reference to a phage trial, possibly at Medical University of South Carolina? I think the way to find out would be through ntminfo.org

Yes, biofilm was touched on but the flew through everything in 3 hours, so not a lot of depth.
There will be a recording available, it usually takes them a couple weeks to come out.
Sue

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Unfortunately, not enough light is shed on NTM biofilm. I’ve listen to a pulmonologist from another country talking about the effectiveness of herbal oils like cloves, oregano and cinnamon in treating NTM nodules deep in the lungs.
I’ve enjoyed reading the Lyme Biofilm treatment article. Thank you for sharing the article with all of us. I wonder why such approaches are not attempted with NTM patients in the US. What do we have to lose? It is better to try them than be on harsh antibiotics with severe side effects for years.
In the conference, they mentioned Host Directed Therapy. It triggers specific immunity against NTM. I was hoping to hear that they were entertaining the notion, at least, of using mRNA to boost specific immunity to the specific stains of NTM just like they did for COVID-19. The technology was developed years ago to treat cancers and proven successful. Thus, it was easy to develop a vaccine for COVID.

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@sue102

Unfortunately, not enough light is shed on NTM biofilm. I’ve listen to a pulmonologist from another country talking about the effectiveness of herbal oils like cloves, oregano and cinnamon in treating NTM nodules deep in the lungs.
I’ve enjoyed reading the Lyme Biofilm treatment article. Thank you for sharing the article with all of us. I wonder why such approaches are not attempted with NTM patients in the US. What do we have to lose? It is better to try them than be on harsh antibiotics with severe side effects for years.
In the conference, they mentioned Host Directed Therapy. It triggers specific immunity against NTM. I was hoping to hear that they were entertaining the notion, at least, of using mRNA to boost specific immunity to the specific stains of NTM just like they did for COVID-19. The technology was developed years ago to treat cancers and proven successful. Thus, it was easy to develop a vaccine for COVID.

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(I’ve listen to a pulmonologist from another country talking about the effectiveness of herbal oils like cloves, oregano and cinnamon in treating NTM nodules deep in the lungs.) May I know where to watch and listen to this?

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Unfortunately all of the research I find evaluates essential oils used on slides, not in the body. The most effective ones include wintergreen, pine and eucalyptus, all with high levels of volatile esters I would not put into my lungs.
Can you send a link to studies showing effectiveness of safe, inhaled essential oils? It would be a blessing to many of us to avoid the antibiotics.
Sue

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@sueinmn

Unfortunately all of the research I find evaluates essential oils used on slides, not in the body. The most effective ones include wintergreen, pine and eucalyptus, all with high levels of volatile esters I would not put into my lungs.
Can you send a link to studies showing effectiveness of safe, inhaled essential oils? It would be a blessing to many of us to avoid the antibiotics.
Sue

Jump to this post

Sorry Sue, I don’t have any links to share with you. I would, though, if I found one.

REPLY
@sue102

Unfortunately, not enough light is shed on NTM biofilm. I’ve listen to a pulmonologist from another country talking about the effectiveness of herbal oils like cloves, oregano and cinnamon in treating NTM nodules deep in the lungs.
I’ve enjoyed reading the Lyme Biofilm treatment article. Thank you for sharing the article with all of us. I wonder why such approaches are not attempted with NTM patients in the US. What do we have to lose? It is better to try them than be on harsh antibiotics with severe side effects for years.
In the conference, they mentioned Host Directed Therapy. It triggers specific immunity against NTM. I was hoping to hear that they were entertaining the notion, at least, of using mRNA to boost specific immunity to the specific stains of NTM just like they did for COVID-19. The technology was developed years ago to treat cancers and proven successful. Thus, it was easy to develop a vaccine for COVID.

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On the surface it seems simple enough to do as you suggested. "I was hoping to hear that they were entertaining the notion, at least, of using mRNA to boost specific immunity to the specific stains of NTM just like they did for COVID-19. " Except then I heard them say in another part of the discussion that in trying to develop phages, they have identified over 1000 genetic differences in just MAC – which makes it seem the task might be tougher.

I too have heard from time to time about trying to use the antibacterial and anti-inflammatory characteristics of certain essential oils to treat our lungs. But then I thought about it – we already have lungs that are not functioning properly to remove even known agents like mucus. How would lung tissue respond to oil, even aerosolized, which is completely foreign matter? Is there another possible delivery agent, like saline? Would the properties of the essential oil survive extraction from the oil and be stable in the saline?

As one of the presenters was saying, so many ideas to try, all dependent on time, money & staffing…we have come quite a long way in the past 5 years, with the addition of Amikacin, trials of other meds, wider use of 7% saline and NAC…
Sue

REPLY
@sueinmn

On the surface it seems simple enough to do as you suggested. "I was hoping to hear that they were entertaining the notion, at least, of using mRNA to boost specific immunity to the specific stains of NTM just like they did for COVID-19. " Except then I heard them say in another part of the discussion that in trying to develop phages, they have identified over 1000 genetic differences in just MAC – which makes it seem the task might be tougher.

I too have heard from time to time about trying to use the antibacterial and anti-inflammatory characteristics of certain essential oils to treat our lungs. But then I thought about it – we already have lungs that are not functioning properly to remove even known agents like mucus. How would lung tissue respond to oil, even aerosolized, which is completely foreign matter? Is there another possible delivery agent, like saline? Would the properties of the essential oil survive extraction from the oil and be stable in the saline?

As one of the presenters was saying, so many ideas to try, all dependent on time, money & staffing…we have come quite a long way in the past 5 years, with the addition of Amikacin, trials of other meds, wider use of 7% saline and NAC…
Sue

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Well said, Sue.
It is not an easy and straightforward disease…multiple species/subspecies, multiple factors and underlying conditions. We are a small group of people and don’t have a strong voice yet to push for more research and clinical trials. More importantly, we are mostly women > 60. However, NTM prevalence is on the rise.

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