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

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 ?

I might add, as @bolso has pointed out, that the biofilms aren't only in our bodies.

Biofilms are rampant in plumbing systems and other water systems, especially those with holding tanks. For sure we know that storage & riser systems in ships and tall buildings have contributed to outbreaks of Legionnaire's disease, and in hospitals to MRSA and other nasty bugs.

I will add that I personally wonder (no scientific studies to back me) how much replacement of copper pipes (copper being naturally somewhat resistant to colonization and biofilm) with plastic ones has contributed.

Certainly something to put on the list to do post-Covid.
Sue

Thanks...back atcha!

That's right Sue @sueinmn, in fact biofilms are everywhere in nature and the built environment. But they aren't all the same -- some biofilm is tougher than others. And some bacteria have less, or even a lot less, of their bugs locked up in biofilms. As a result, they're easier to hit with antibiotics, disinfectants and chlorine.

Unfortunately, copper pipes or taps aren't a lasting solution to help us avoid mycobacteria or other bugs in the water supply. (I wish they were!) Although brand new copper pipes and taps start out being more effective at reducing bugs than other materials -- plastic/pvc, iron, stainless steel, cement, etc -- sadly, research has shown that after 200 days, they end up just the same as these other materials. (Copper naturally oxidises over time and forms films, so less copper ions and particulate can be released).

Even though biofilms are everywhere, our biggest problem is the mycobacterial biofilms already in our lungs.

Mycobacterial biofilms for both fast- and slow-growing bacteria form really quickly -- 3 days is common. And these myco biofilms aren't just inert piles of goop -- they can actually cause lung cavities and lung damage almost as much as free-floating mycobacteria can. Myco biofilms also select for 'persisters' and can really increase drug resistance over time -- so it definitely isn't benign stuff!

It isn't easy to get rid of mycobacterial biofilms -- and almost impossible for many antibiotics to do it alone. But there's some research showing that if anti-biofilm agents are used to treat patients, as well as antibiotics, the effects of those antibiotics are significantly increased and improved. Of course, so far, few anti-biofilm agents have been found to be safe to use in the lung. And there's very little mycobacterial treatment research specifically on this subject yet. We need to push for more research to be done.

Anniepie...you mention the anti-biofilm agents being used...do you know any names? I’m curious too about any present day research of any possible adjuncts we can add to our arsenal of meds for treatment. Good information you have shared. Thank you.
Regina

Annie, and group...I am posting a link...regarding NAC and biofilm...but it is lengthy and we need our real science minded experts among us to study the entire abstract...and spit out any merit it may have for us.
I also found a link to “BeyondAir” ...I have copied below...
Beyond Air® Approved to Initiate Clinical Study at 150 ppm Nitric Oxide with LungFit™† for the Treatment of Acute Viral Pneumonia Including COVID-19....just google “BeyondAir”
...which mentions “mycobacterium “ in therapies...need the Mensa Thinkers in our group...to digest this information and see any possibility. I actually wrote the CEO of BeyondAir an email to ask about trials in US.
Any feedback from the group?
Regina

Download as PDFOctober 21, 2020 7:00am EDT

Hi cmi,
We have been studying bacteriophages as a potentially valuable therapeutic agent. Bacteriophages or phages - as they are commonly known - are not new. You can read about their history and current research in the attached papers.
The University of California San Diego's School of Medicine has a Center for Innovative Phage Applications and Therapeutics (https://medschool.ucsd.edu/som/medicine/divisions/idgph/research/center-innovative-phage-applications-and-therapeutics/Pages/default.aspx).
It is worth noting also that there is at least a pharmaceutical corporation (https://www.armatapharma.com/) actively developing products in this field. (I disclose that I don't have any connection with such company).
Regards,
Armando

@bolso1 Yes, Armando, I've been reading about bacteriophages for awhile and some good results in some cases. I just wish they could get down the pike sooner than later. It's so hard waiting on all of this. Nan

Hi Regina @cmi -- yes I wrote to them at BeyondAir also.

To get into this trial you need to meet a bunch of criteria -- but the main one is that you have 'refractory' NTM disease.....that means the drugs have not been successful for you after 2 or 3 years of taking them.

It's a multi-location trial. In some locations they are more advanced with recruitment of NTM patients than others. Brisbane, Australia where I live is one of the trial sites.

Basically, the trial aims to test whether taking the nitric oxide treatment with your standard NTM drugs can help to increase the number of people who seroconvert. So it's really an augmentation of existing NTM treatment.

I emailed the trial coordinator, and talked with the trial nurse and my doctor who is co-researching on this trial. Unfortunately -- although so far I do have refractory MAI -- I'm not eligible for other reasons. (The things that rule me out of the trial are: the Nitric Oxide might potentially affect my heart drugs, and I cannot produce quarterly sputum to test -- I need to have a bronchoscopy to test for continued NTM infection).

But other people in this group, who live in the locations where this trial is being held, might have better luck getting in to it.
Annie

Hi Heather @heathert. I really hope things are going okay for you and your family -- what a time we live in !

I've been approved to get the Arikayce and I'm now just waiting to get the meds and equipment from the USA. I've also ordered some Strepfen online (we don't have it in Australian pharmacies)

I have some Arikayce questions for you if that's okay: How often did you take a Strepfen lozenge -- was it every day? Several times a day? Mostly only for the first few weeks? Or all the time you were treated with Arikayce?

(Strepfen contains a relative of Ibuprofen -- unfortunately these drugs interact with my heart meds and can reduce the effect of one of the heart drugs I need, so I will have to try juggling the times I take it etc. What a bummer!)

Hugs, Annie