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.

Armando | @bolso1 | Jan 19, 2021
In reply to @anniepie "Me too Heather -- I wish that also. Most drugs fighting all kinds of bacteria are..." + (show)
@anniepie

Me too Heather -- I wish that also.

Most drugs fighting all kinds of bacteria are petri-dish-tested using mainly the planktonic ('free- floating') stage of bacteria, not really testing much sessile bacteria living inside biofilms. The drug companies do that to show their drugs work. (They would need drug doses far far higher to fight through biofilm to get to the bacteria, and nobody can survive that).

Some NTM drugs do manage to get into the outer layers of the biofilm though -- just not into the inner bacteria in biofilm. (Azithromycin is one that can do this a bit -- at least for a while). So it's no wonder the drugs can take such a long time trying to kill this bug.

Unfortunately our lungs a rather delicate things -- we can't treat them like "old leather bags" as many people do when we're young! While our stomachs can handle vinegar and things like that, our lungs cannot. (Neat vinegar kills mycobacteria, folks!). But even inhaling vinegar gas into our lungs can cause severe damage to our lungs, unfortunately. The lungs are a difficult place to treat bugs.
And it's very difficult to find things that break up biofilms in the lungs that are also safe to use in the lungs.

Some people, with cystc fibrosis for example, have tried nebulising drops of essential oits that are meant to be antimicrobial and fight biofilm. But then they can develop severe hypersensitivity reactions to them in their lungs, and can't use them again. Some other people have started using sound vibrations on their chests (some sound vibrations are used to help prevent biofilms from developing on surgical equipment). But it's difficult and I wish there was much, much more research on mycobacteria treatments and biocides for biofilms that are safe to use in the lungs. We all do.

Jump to this post

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.

REPLY
3 replies
ellenn | @ellenn | Jan 19, 2021
In reply to @anniepie "Hi Ellen, @ellenn, also in additon to what @poodledoc has advised you, on Page 1 about..." + (show)
@anniepie

Hi Ellen, @ellenn, also in additon to what @poodledoc has advised you, on Page 1 about the middle of the page on the right-hand side you will see a small box where you can select either 'Oldest to Newest' or 'Newest to Oldest'. 'Oldest to Newest' is the default so you always start on Page 1. Select 'Newest to Oldest' to go to the most recent posts.
Good luck

Jump to this post

Thanks! I needed that

REPLY
ellenn | @ellenn | Jan 19, 2021
In reply to @heathert "Thanks @ anniepie, Hi @jr2366 Jennifer , I found the aricayce much easier than the big..." + (show)
@heathert

Thanks @ anniepie, Hi @jr2366 Jennifer , I found the aricayce much easier than the big 3, the aricayce inhaled hardly had any side effects for me, only loss of voice which you can take strepfen for. Please let us know how you get on. Take care Heather

Jump to this post

Where do you get Strepfen and in what form?
Does it help with strong coughing that may bring up blood? ( Maybe from breaking blood vessels from coughing to strongly?
Ellen

REPLY
1 reply
ellenn | @ellenn | Jan 19, 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.

Jump to this post

Do you use enzymes? Have you found any that you've had success with? What kind of success?
Do you take the Big 3 or anything else?
Thanks,
Ellen

REPLY
2 replies
Armando | @bolso1 | Jan 19, 2021
In reply to @ellenn "Do you use enzymes? Have you found any that you've had success with? What kind of..." + (show)
@ellenn

Do you use enzymes? Have you found any that you've had success with? What kind of success?
Do you take the Big 3 or anything else?
Thanks,
Ellen

Jump to this post

Hi Ellen, my wife is the one afflicted with MAI. I have just been helping to learn more.
No, she doesn't use enzymes, but I have read scientific papers on that.
Regards,

REPLY
rits | @rits | Jan 19, 2021
In reply to @anniepie "Me too Heather -- I wish that also. Most drugs fighting all kinds of bacteria are..." + (show)
@anniepie

Me too Heather -- I wish that also.

Most drugs fighting all kinds of bacteria are petri-dish-tested using mainly the planktonic ('free- floating') stage of bacteria, not really testing much sessile bacteria living inside biofilms. The drug companies do that to show their drugs work. (They would need drug doses far far higher to fight through biofilm to get to the bacteria, and nobody can survive that).

Some NTM drugs do manage to get into the outer layers of the biofilm though -- just not into the inner bacteria in biofilm. (Azithromycin is one that can do this a bit -- at least for a while). So it's no wonder the drugs can take such a long time trying to kill this bug.

Unfortunately our lungs a rather delicate things -- we can't treat them like "old leather bags" as many people do when we're young! While our stomachs can handle vinegar and things like that, our lungs cannot. (Neat vinegar kills mycobacteria, folks!). But even inhaling vinegar gas into our lungs can cause severe damage to our lungs, unfortunately. The lungs are a difficult place to treat bugs.
And it's very difficult to find things that break up biofilms in the lungs that are also safe to use in the lungs.

Some people, with cystc fibrosis for example, have tried nebulising drops of essential oits that are meant to be antimicrobial and fight biofilm. But then they can develop severe hypersensitivity reactions to them in their lungs, and can't use them again. Some other people have started using sound vibrations on their chests (some sound vibrations are used to help prevent biofilms from developing on surgical equipment). But it's difficult and I wish there was much, much more research on mycobacteria treatments and biocides for biofilms that are safe to use in the lungs. We all do.

Jump to this post

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.

REPLY
2 replies
Mentor
Sue, Volunteer Mentor | @sueinmn | Jan 19, 2021
In reply to @ellenn "Do you use enzymes? Have you found any that you've had success with? What kind of..." + (show)
@ellenn

Do you use enzymes? Have you found any that you've had success with? What kind of success?
Do you take the Big 3 or anything else?
Thanks,
Ellen

Jump to this post

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

REPLY
1 reply
heathert | @heathert | Jan 19, 2021
In reply to @ellenn "Where do you get Strepfen and in what form? Does it help with strong coughing that..." + (show)
@ellenn

Where do you get Strepfen and in what form?
Does it help with strong coughing that may bring up blood? ( Maybe from breaking blood vessels from coughing to strongly?
Ellen

Jump to this post

@ellenn You can buy Strepfen on the internet, in New Zealand you can purchase them from the chemist but I do not know about USA or UK. I am not sure about the strong coughing, they are for throat problems mainly a mix of Strepsils and Ibuprofen that goes directly to the throat. Take care Heather

REPLY
heathert | @heathert | Jan 19, 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.

Jump to this post

@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

REPLY
1 reply
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 🙂

Jump to this post

@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

REPLY
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