(MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS

Posted by Katherine, Alumni Mentor @katemn, Nov 21, 2011

I am new to Mayo online .. I was hoping to find others with .. MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and/or BRONCHIECTASIS. I found only 1 thread on mycobacterium accidently under the catagory “Lungs”. I’m hoping by starting a subject matter directly related to MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) I may find others out there!

I was diagnosed by a sputum culture August 2007 (but the culture result was accidentally misfiled until 2008!) with MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and BRONCHIECTASIS. I am now on 5 antibiotics. Working with Dr. Timothy Aksamit at Rochester Mayo Clinic .. he is a saint to have put up with me this long! I was terrified of the treatment . started the first antibiotic September 3, 2011 … am now on all 5 antibiotics for 18 mos to 2 years. Am delighted at the very bearable side effects!

I wrote on the 1 thread I found: If you google NON-TUBERCULOUS MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) you will learn a LOT about the disease. But PLEASE do NOT get scared about all the things you read .. that is what I did and nearly refused to do the treatment until after a 2nd Micomacterium was discovered! Educate yourself for “due diligence” .. but take it all with a grain of salt .. you are NOT necessarily going to have all the terrible side effects of the antibiotics! Good luck to you!

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January 2017 Update

One of our great Connect Members .. @Paula_MAC2007  .. had a wonderfully helpful idea that I wanted to share! Her idea .. as you read through the pages to gather information on our shared disease of MAC you can develop a personal “file cabinet” for future reference without the necessity of reading all the pages again!

If you have the “MS Word” program on your computer:

  1. Document Title Example:  Mayo Clinic Connect MAI/MAC Information
  2. Then develop different categories that make sense to you such as:  Heath Aids .. Videos .. Healthy Living .. Positive Thinking .. Baseline Testing and Regular Testing .. Antibiotics ..
    Tips for
  3. As you read the pages .. copy/paste/save things of interest into that MS Word document under your preferred categories for future reference.

Then as you want to refer back to something in the future .. YEAH!  You have now created your own personal “file cabinet” on MAC/MAI!  Go to it!

KateMN

@bolso1

A while ago, I opened a topic on biofilms by posting a couple of early references on the issue.
There has been considerable research on biofilms in distinct environments, from industrial to health. Just as an example, consider how much has been done on dental plaque, a serious and ubiquitous biofilm.
Unfortunately, we need more and better research on biofilm management in lungs. One promising alternative is the use of enzymes to promote the destruction of the polysaccharide chains that surround the biofilms.

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@bolso1 I have wondered if these bugs multiply in our mouths and then are sucked in to out lungs at night while breathing. Sorry a bit off the topic but have often wondered. Take care Heather

Liked by anniepie

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@rvan

Thanks CMI, this is what i am sure lies ahead for me.. i am guessing you chose to take the meds and fight this thing, right now i do have a very low BMI 🙁 the journey scares me but I need to take it head on. I have heard many say that you are more likely to die with MAC then to die from MAC which is very encouraging. This forum in such a short time has provided much support and knowledge I could not have gained alone. Thanks for you insight and lets kick this thing in the ass 🙂

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@rvan I also started meds with a low BMI, I was 47kgs, I started on Fortisip (made by Nutricia) ready made drinks they were yummy and helped put the weight on, a gastro specialist saw how skinny I was and prescribed them for me, a life saver. All the best Heather

Liked by anniepie, rvan

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

Liked by heathert, anniepie

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@rits

Thank you so much for this extremely informative post. I believe the lipisomes in Arikayce are intended to pierce the biofilm so that the amikaycin can get in.

My lungs are fragile and do not like anything foreign inhaled into them so I had a hard time doing Arikayce and created an imagery that helped.

With every inhale, I pictured the milky substance aerosolized had thousands of warriors running into my airways. The warriors were Roman gladiators or Vikings, huge, brawny, hairy men wearing metal breastplate and helmets and carrying weapons, including assault weapons. As they ran, thousands of male voices shouted, "KILL! KILL! KILL!"

The warriors were stopped by a wall. I knew that mycobacteria had some kind of protective shell but I know now it is biofilm. As they approached the biofilm, a small pack on each of their backs opened and a tiny female sprite flew out. The sprites were Tinkerbells but instead of wands, they carried spears. They thrilled loudly above the shouts of "kill" from the men. Quickly they flew to the biofilm and pierced it with their spears and the warriors drew their weapons and ran in killing mycobacteria left and right.

Next inhale.

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@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

Liked by anniepie, rits

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@heathert

@bolso1 I have wondered if these bugs multiply in our mouths and then are sucked in to out lungs at night while breathing. Sorry a bit off the topic but have often wondered. Take care Heather

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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.

Liked by anniepie

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@bolso1

A while ago, I opened a topic on biofilms by posting a couple of early references on the issue.
There has been considerable research on biofilms in distinct environments, from industrial to health. Just as an example, consider how much has been done on dental plaque, a serious and ubiquitous biofilm.
Unfortunately, we need more and better research on biofilm management in lungs. One promising alternative is the use of enzymes to promote the destruction of the polysaccharide chains that surround the biofilms.

Jump to this post

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.

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@rits

Thank you so much for this extremely informative post. I believe the lipisomes in Arikayce are intended to pierce the biofilm so that the amikaycin can get in.

My lungs are fragile and do not like anything foreign inhaled into them so I had a hard time doing Arikayce and created an imagery that helped.

With every inhale, I pictured the milky substance aerosolized had thousands of warriors running into my airways. The warriors were Roman gladiators or Vikings, huge, brawny, hairy men wearing metal breastplate and helmets and carrying weapons, including assault weapons. As they ran, thousands of male voices shouted, "KILL! KILL! KILL!"

The warriors were stopped by a wall. I knew that mycobacteria had some kind of protective shell but I know now it is biofilm. As they approached the biofilm, a small pack on each of their backs opened and a tiny female sprite flew out. The sprites were Tinkerbells but instead of wands, they carried spears. They thrilled loudly above the shouts of "kill" from the men. Quickly they flew to the biofilm and pierced it with their spears and the warriors drew their weapons and ran in killing mycobacteria left and right.

Next inhale.

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@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

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@sueinmn

Ellen – The problem is delivering the enzymes specifically to the lungs – as @rits said, Arikayce is an effort to accomplish it.

Most enzymes as formulated cannot necessarily make it through the digestive and circulatory systems into the lungs. Research is underway – cystic fibrosis (CF) researchers are always working on it – with increased acknowledgement of the issue of biofilm in plumbing as a serious health issue, I hope this will accelerate.

Sue

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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

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@anniepie

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

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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

Liked by anniepie

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@sueinmn

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

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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.

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@boomerexpert

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.

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

Liked by anniepie

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@sueinmn

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

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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 ?

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@anniepie

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 ?

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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

Liked by heathert, anniepie

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@heathert

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

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Thanks…back atcha!

Liked by heathert, anniepie

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@sueinmn

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

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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.

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