1. < MAC & Bronchiectasis

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

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!

++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
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:
- Document Title Example:  Mayo Clinic Connect MAI/MAC Information
- 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
- 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!

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

heathert | @heathert | Jan 19, 2021
In reply to @rvan "Thanks CMI, this is what i am sure lies ahead for me.. i am guessing you..." + (show)
@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

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rvan | @rvan | Jan 19, 2021

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

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nannette | @nannette | Jan 19, 2021
In reply to @rits "Thank you so much for this extremely informative post. I believe the lipisomes in Arikayce are..." + (show)
@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

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Armando | @bolso1 | Jan 20, 2021
In reply to @heathert "@bolso1 I have wondered if these bugs multiply in our mouths and then are sucked in..." + (show)
@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.

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anniepie | @anniepie | Jan 21, 2021
In reply to @bolso1 "A while ago, I opened a topic on biofilms by posting a couple of early references..." + (show)
@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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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.

REPLY
anniepie | @anniepie | Jan 21, 2021
In reply to @rits "Thank you so much for this extremely informative post. I believe the lipisomes in Arikayce are..." + (show)
@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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anniepie | @anniepie | Jan 21, 2021
In reply to @sueinmn "Ellen - The problem is delivering the enzymes specifically to the lungs - as @rits said,..." + (show)
@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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1 reply
Mentor
Sue, Volunteer Mentor | @sueinmn | Jan 21, 2021
In reply to @anniepie "Yes Sue @sueinmn, me too -- I really hope this research will accelerate. (Maybe we should..." + (show)
@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

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2 replies
boomerexpert | @boomerexpert | Jan 21, 2021
In reply to @sueinmn "Annie - I think joining forces is a great idea - unfortunately, this is not something..." + (show)
@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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1 reply
heathert | @heathert | Jan 21, 2021
In reply to @boomerexpert "Yes that would be a good way to get heard more readily. And the best way..." + (show)
@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

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