(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

Thanks Heathert - good info, and a good idea. I will give those a try. 🙂

@rits Love your mental imagery! I, too, have done the same thing in my head but not in the great detail that you have!! Go warriors!! Get through that biofilm! Nan

Hi Heather,
I don't know. Mycobacteria seem to be ubiquitous, so we all are exposed to them, but only some - very regrettably - are affected.

Yes @bolso1, me too -- I've seen some research in the past, and more recently, on enzymes and biofilms in the body and many other applications. But so far, no enzyme lung treatments yet for NTM biofilms.
(NB. Folks, some enzymes have been sold in shops or online for a while, but unfortunately, most are for the gut and digestion -- no use for the lungs. Sadly, they cannot help us with NTMs).
In recent years, there's been a little research on enzymes for biofilms in the lungs that's more promising -- e.g. for Pseudomonas Aeroginosa in people with Cystic Fibrosis etc. For example, getting an enzyme like pyruvate dehydrogenase (NOT pyruvate dehydrogenase kinase) with an antibiotic like Tobramycin -- so the biofilm from p.Aeroginosa is attacked as well as the bug. But there are some risks. And there's no inhalable drug yet -- or any research for an inhalable drug yet.
Unfortunately, nobody should 'hold their breath' waiting for a treatment of this kind. A lot of this research is very small-scale and unfunded, or given very little funding. It might not be taken up by drug companies for decades, if ever -- unless there's an ongoing, public push for it.
The so-called 'big 3' we're often given for NTMs are 3 antibiotics that have actually been around for 60 years! Good grief, 60 years!
Back in those days researchers didn't know much about biofilms, and many still don't These drugs have also been inherited from other illnesses -- e.g. Tuberculosis, or Leprosy.
Additionally, some of our doctors and pulmonologists either aren't 'awake' to the fact that drug companies really only test new drugs on free-floating planktonic bacteria, but not on the bacterial biofilms as well (because they'd need dangerously high doses to get through biofilms); or they're just pragmatic -- they're only going to treat NTMs with what's already available. Period.
But one thing Covid19 has taught us: it's really just a matter of 'will' how quickly research gets done -- and a matter of increased funding for medical research and medical applications.

@rits Hi Rita -- hey I'm with you! I hope the Arikayce helps me too.
Yes Arikayce and Azithromycin have been shown to get into the outer layers of NTM biofilms, in certain circumstances -- but quite often they can't get all the way into the biofilms as well. Even Rifampin can sometimes 'shrink' the biofilm a bit too. But these NTM drugs are not really anti-biofilm drugs -- and they were not designed to be.
In the recent past, research on liposomal -- and even smaller nano-particle -- drugs has been showing more promise than the old drugs for NTMs. It's likely that some of these new drugs will have a better chance of getting further into biofilms because they're so small and inhaled into the lung, but these aren't actually anti-biofilm drugs either.
Also, any potential new drugs could be years off yet. (Good things are meant to come to those who wait -- but maybe we should shout louder, not just patiently wait!)
That said, I hope the inhaled Arikayce helps me and you both -- and soon.
Good luck to all of us!
Annie

Yes Sue @sueinmn, me too -- I really hope this research will accelerate.
(Maybe we should join with other groups where bacterial biofilms in the lungs are a real problem for treatment, like people with CF or COPD etc, to make our voices louder ??)
Annie

Annie - I think joining forces is a great idea - unfortunately, this is not something I can put on my radar right now - there is much on my plate. I would support anyone here who starts the effort.
Sue

Yes that would be a good way to get heard more readily. And the best way to do so is with a petition to the CDC...With the help of Mayo, reaching out to its vast list of folks with all three diseases...which starts with the staff person overseeing these forums.

@boomerexpert, lovely to see your smiling face again, hope all is going well! Take care Heather

I know, Sue @sueinmn, and we're in the middle of the worst part of Covid right now also. So it's maybe not such good timing just yet.
But it's something we can think more about, Then when the timing is better, maybe we could start doing this?

Hi @boomerexpert, me too -- very nice to see and hear you again, also. Your ideas are really, really good!

If anyone else on this forum has any thoughts or ideas, please contribute when you can. (Any old idea will do, LOL).

I think we need 3 things to happen:

1, More research focus on treatments for infectious diseases -- bacterial, viral and fungal -- especially chronic or recurrent infectious diseases. (Covid19 has certainly shown us the world needs that!)

2, More acknowledgment among doctors and specialists that biofilms are common in infectious diseases. And some diseases lock up much more of their bugs in biofilms, where antibiotics are less use. (As a result, antobiotics are used too often and for too long. Overuse is leading to antibiotic resistance all over the world! Then when antibiotics don't work so well, illnesses are often just 'abandoned to fate'. When drug treatments aren't really hitting the biofilms as well, infectious diseases can become chronic or recurrent).

3. More education of health policy-makers and the public about biofilms in infections, so that drug companies can't just continue to focus only on the planktonic stages of bugs in developing and testing their drugs -- they have to address the biofilm component too. For more than 80 years, they've only been doing half the job!

What do you think ?