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!

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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:
- 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.

Katherine, Alumni Mentor | @katemn | Dec 9, 2016
In reply to @katemn "Heather, you are NOT going to believe this .. BUT when reading this article .. something..." + (show)
@katemn

Heather, you are NOT going to believe this .. BUT when reading this article .. something clicked! I went back to my research on my husband's chemotherapy. If it works for CLL cancer .. WHY couldn't they come up with something for us??????? Made sense to a NON MEDICAL person like me! Katherine Here is what I found:

MY HUSBAND'S CLL CHEMOTHERAPY DRUG IMBRUVICA that he has been on for two years .. that his Oncologist has said is NOT a cure but is "life sustaining" .. a type of drug called: Immunotherapy.

Immunotherapy is a broad category of anti-cancer therapies that use the body’s immune system to fight cancer cells. These cells are different from normal cells, in that they do not die normally. Think of these rapidly-dividing cells like an out-of-control copy machine that won’t stop creating images. These abnormal cells frequently change, or “mutate,” to evade the immune system. Immunotherapy drugs are designed to alert the immune system about these mutated cells so it can locate and destroy them.
+++++++++++++++++++++++++++++++++++++++++++++++++++++++=
http://www.voanews.com/a/scientists-natural-immunity-fight-infection-without-antibiotics/3307299.html
Scientists in Sweden, however, may have found an alternative to using antibiotics.
In a mouse model, the scientists trained the body’s natural immune system, called innate immunity, to disarm and destroy a bacterium that causes a kidney infection, often in children.
The innate immune system is the front line of the body's defenses, and it works in two different ways to fight infections.

The first is what researchers call a "good antibacterial defense" that targets and kills the invading pathogen. The second causes inflammation — the redness, swelling and fever that accompany an illness or injury. It's a vital part of the immune response but also can cause significant tissue damage, and in some cases it can contribute to the progress of the disease or infection.

"So the question has been: Can you find a way of treating infections by stopping the bad part of the immune defense and still keep the antibacterial defense?" said Catharina Svanborg, a professor of clinical immunology at Lund University in Sweden. "This is what we have done in our model.”

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Heather, I agree. However, my husband and I have traveled all over the world and have felt terribly ignorant due to the fact we speak merely one language .. English .. whereas in most countries we visit they are at LEAST bilingual! My bet is Catharina speaks/writes English better than I do so I DEFINITELT feel it would be a good idea for me to point out the life giving affect of the Imbruvica for my husband! Thanks for the idea! Hugs! Katherine (Heather, just going to email it .. but where/how did you find her email address? Could you let me know! .. You are one smartie! What are your email methods? I'd like to know! You techie, you!)

REPLY
boomerexpert | @boomerexpert | Dec 9, 2016
In reply to @katemn "Heather, you are NOT going to believe this .. BUT when reading this article .. something..." + (show)
@katemn

Heather, you are NOT going to believe this .. BUT when reading this article .. something clicked! I went back to my research on my husband's chemotherapy. If it works for CLL cancer .. WHY couldn't they come up with something for us??????? Made sense to a NON MEDICAL person like me! Katherine Here is what I found:

MY HUSBAND'S CLL CHEMOTHERAPY DRUG IMBRUVICA that he has been on for two years .. that his Oncologist has said is NOT a cure but is "life sustaining" .. a type of drug called: Immunotherapy.

Immunotherapy is a broad category of anti-cancer therapies that use the body’s immune system to fight cancer cells. These cells are different from normal cells, in that they do not die normally. Think of these rapidly-dividing cells like an out-of-control copy machine that won’t stop creating images. These abnormal cells frequently change, or “mutate,” to evade the immune system. Immunotherapy drugs are designed to alert the immune system about these mutated cells so it can locate and destroy them.
+++++++++++++++++++++++++++++++++++++++++++++++++++++++=
http://www.voanews.com/a/scientists-natural-immunity-fight-infection-without-antibiotics/3307299.html
Scientists in Sweden, however, may have found an alternative to using antibiotics.
In a mouse model, the scientists trained the body’s natural immune system, called innate immunity, to disarm and destroy a bacterium that causes a kidney infection, often in children.
The innate immune system is the front line of the body's defenses, and it works in two different ways to fight infections.

The first is what researchers call a "good antibacterial defense" that targets and kills the invading pathogen. The second causes inflammation — the redness, swelling and fever that accompany an illness or injury. It's a vital part of the immune response but also can cause significant tissue damage, and in some cases it can contribute to the progress of the disease or infection.

"So the question has been: Can you find a way of treating infections by stopping the bad part of the immune defense and still keep the antibacterial defense?" said Catharina Svanborg, a professor of clinical immunology at Lund University in Sweden. "This is what we have done in our model.”

Jump to this post

Inasmuch as this new therapy has promise, docs are now finding it has many deadly side-effects, like people's organs shutting down... Until it's better perfected, researchers are recommending limited use of it to those with end-stage cancer... as with gene therapy, and similar to early-stage cancer therapies, it's not yet ready for prime-time...

REPLY
Katherine, Alumni Mentor | @katemn | Dec 9, 2016

Boomer, what my husband's Oncologist has told us is that Imbruvica either works front end for a patient .. or it does not. Luckily for my husband it REALLY has .. he has now been on it for two years and doing very well. My understanding of it is that with single drug use has been the most safe .. the most problems have come with combination drug therapy. Luckily my husband's Oncologist was smart enough to go single drug and all has been well. .. and yes my husband was Stage 4. BUT due to this therapy.. I'm KEEPIN" that fella around! Katherine

REPLY
2 replies
heathert | @heathert | Dec 9, 2016
In reply to @katemn "Heather, you are NOT going to believe this .. BUT when reading this article .. something..." + (show)
@katemn

Heather, you are NOT going to believe this .. BUT when reading this article .. something clicked! I went back to my research on my husband's chemotherapy. If it works for CLL cancer .. WHY couldn't they come up with something for us??????? Made sense to a NON MEDICAL person like me! Katherine Here is what I found:

MY HUSBAND'S CLL CHEMOTHERAPY DRUG IMBRUVICA that he has been on for two years .. that his Oncologist has said is NOT a cure but is "life sustaining" .. a type of drug called: Immunotherapy.

Immunotherapy is a broad category of anti-cancer therapies that use the body’s immune system to fight cancer cells. These cells are different from normal cells, in that they do not die normally. Think of these rapidly-dividing cells like an out-of-control copy machine that won’t stop creating images. These abnormal cells frequently change, or “mutate,” to evade the immune system. Immunotherapy drugs are designed to alert the immune system about these mutated cells so it can locate and destroy them.
+++++++++++++++++++++++++++++++++++++++++++++++++++++++=
http://www.voanews.com/a/scientists-natural-immunity-fight-infection-without-antibiotics/3307299.html
Scientists in Sweden, however, may have found an alternative to using antibiotics.
In a mouse model, the scientists trained the body’s natural immune system, called innate immunity, to disarm and destroy a bacterium that causes a kidney infection, often in children.
The innate immune system is the front line of the body's defenses, and it works in two different ways to fight infections.

The first is what researchers call a "good antibacterial defense" that targets and kills the invading pathogen. The second causes inflammation — the redness, swelling and fever that accompany an illness or injury. It's a vital part of the immune response but also can cause significant tissue damage, and in some cases it can contribute to the progress of the disease or infection.

"So the question has been: Can you find a way of treating infections by stopping the bad part of the immune defense and still keep the antibacterial defense?" said Catharina Svanborg, a professor of clinical immunology at Lund University in Sweden. "This is what we have done in our model.”

Jump to this post

I just google the name and university name and then "email address" sometimes I get lucky soetimes not, hers was easy, have a try. let me know it you cant find it.

REPLY
heathert | @heathert | Dec 9, 2016
In reply to @katemn "Heather, you are NOT going to believe this .. BUT when reading this article .. something..." + (show)
@katemn

Heather, you are NOT going to believe this .. BUT when reading this article .. something clicked! I went back to my research on my husband's chemotherapy. If it works for CLL cancer .. WHY couldn't they come up with something for us??????? Made sense to a NON MEDICAL person like me! Katherine Here is what I found:

MY HUSBAND'S CLL CHEMOTHERAPY DRUG IMBRUVICA that he has been on for two years .. that his Oncologist has said is NOT a cure but is "life sustaining" .. a type of drug called: Immunotherapy.

Immunotherapy is a broad category of anti-cancer therapies that use the body’s immune system to fight cancer cells. These cells are different from normal cells, in that they do not die normally. Think of these rapidly-dividing cells like an out-of-control copy machine that won’t stop creating images. These abnormal cells frequently change, or “mutate,” to evade the immune system. Immunotherapy drugs are designed to alert the immune system about these mutated cells so it can locate and destroy them.
+++++++++++++++++++++++++++++++++++++++++++++++++++++++=
http://www.voanews.com/a/scientists-natural-immunity-fight-infection-without-antibiotics/3307299.html
Scientists in Sweden, however, may have found an alternative to using antibiotics.
In a mouse model, the scientists trained the body’s natural immune system, called innate immunity, to disarm and destroy a bacterium that causes a kidney infection, often in children.
The innate immune system is the front line of the body's defenses, and it works in two different ways to fight infections.

The first is what researchers call a "good antibacterial defense" that targets and kills the invading pathogen. The second causes inflammation — the redness, swelling and fever that accompany an illness or injury. It's a vital part of the immune response but also can cause significant tissue damage, and in some cases it can contribute to the progress of the disease or infection.

"So the question has been: Can you find a way of treating infections by stopping the bad part of the immune defense and still keep the antibacterial defense?" said Catharina Svanborg, a professor of clinical immunology at Lund University in Sweden. "This is what we have done in our model.”

Jump to this post

my pleasure, thanks to you too and keep us posted.

REPLY
heathert | @heathert | Dec 9, 2016
In reply to @katemn "Boomer, what my husband's Oncologist has told us is that Imbruvica either works front end for..." + (show)
@katemn

Boomer, what my husband's Oncologist has told us is that Imbruvica either works front end for a patient .. or it does not. Luckily for my husband it REALLY has .. he has now been on it for two years and doing very well. My understanding of it is that with single drug use has been the most safe .. the most problems have come with combination drug therapy. Luckily my husband's Oncologist was smart enough to go single drug and all has been well. .. and yes my husband was Stage 4. BUT due to this therapy.. I'm KEEPIN" that fella around! Katherine

Jump to this post

@katemn sounds great, its such a small world isnt it. Together we can do this. I was also thinking there is no register(as far as im aware) for our disease so there isnt any information for doctors to go by, what may have worked for other doctors etc, they all need some sort of communication with each other all over the world to share experiences, what worked and what diddnt(then theres less trial and error, which is what seems to be happening now) We should all suggest it to our doctors/hospitals and see what they suggest. sorry its a bit long winded im great at knowing what I want to say but doing it the long confusing way. haha
. I am thinking that with the drugs we have at the moment (big 3),we need to stay on them,( unless we get a negitive sputum within 6 months of treatment,) to keep them at bay, not reproducing, until there is a treatment to cure this once and for all, relapses happen all too often, to so many ,and are doing damage, we need a kind of long term maintanence, maby at lower doses or month about or something. Sorry just wandered off topic, having one of THOSE days when my head is going to fast.

REPLY
Katherine, Alumni Mentor | @katemn | Dec 9, 2016

Heather, I know for Dr. Aksamit .. it needs to be TWELVE months (sputum samples) prior to the end of antibiotic treatment .. not six and the darn critters are still there lying in wait to multiply! That is why it is so important to maintain our daily "lung hygiene" .. getting the sputum up and out . as well as staying as healthy and serene as possible.

As far as linking the doctors .. I know for Dr. Aksamit .. he speaks at conferences all over the world .. plus writes papers. Truthfully .. this subject is "above my pay grade" .. I really don't have a clue how doctors keep up on these things. I hate to say this .. but my guess is that perhaps a bit of ego might get involved also? Our type of Forum .. sharing might not work? BUT one of the things I REALLY like about Mayo Clinic is that they DO work as a team .. they DO consult with each other .. team work .. sharing cases with each other .. sharing problems .. ideas .. THAT is what I think is a wonderful part of going to Mayo Clinic! You get the brains of many if there is a problem!

Frankly I think as patients we can EASILY see just how difficult it is for doctors to "keep up" when they must see a new patient every 15 minutes (as now allotted by the insurance companies), keep all the new computerized medical records required .. PLUS even attempt to keep up on ANY new illness they are unaware of/do not remember from medical school .. or all the new medical treatments/medicines that have been discovered!!

I think that is WHY I am such a BIG advocate on our Forum of each of us doing our OWN "Due Diligence" .. printing out information .. AND taking that information to your doctor! Many on our Forum have said that information they have learned on our Forum is NEWS to their doctor! It may be sad .. but true .. "If it is to be .. it is up to ME!".

That said .. I still REALLY like your idea of contacting labs .. MANY OF US blasting them with letters requesting help with new antibiotics for our disease. Dr. Aksamit has told me that since it is a relatively rare disease .. there just has not been money for research. Maybe no money .. but maybe publicity?

By the way .. are ALL of you aware that if you shop at Amazon.com you can request a portion of your purchases be given to NTM?? I have been doing it for a couple of years!! It is called: Amazon Smile. You can find out about it at:
http://smile.amazon.com/gp/chpf/about/ref=smi_aas_redirect?ie=UTF8&*Version*=1&*entries*=0
NTM Info & Research, Inc.
Location: Coral Gables, FL | Year Founded: 2003
Mission: NTMir's mission is to save and improve lives by promoting support, research, education, early detection, and improved treatment programs for those with pulmonary NTM disease.

REPLY
1 reply
Kay Strand | @kaystrand | Dec 9, 2016
In reply to @katemn "Heather, I know for Dr. Aksamit .. it needs to be TWELVE months (sputum samples) prior..." + (show)
@katemn

Heather, I know for Dr. Aksamit .. it needs to be TWELVE months (sputum samples) prior to the end of antibiotic treatment .. not six and the darn critters are still there lying in wait to multiply! That is why it is so important to maintain our daily "lung hygiene" .. getting the sputum up and out . as well as staying as healthy and serene as possible.

As far as linking the doctors .. I know for Dr. Aksamit .. he speaks at conferences all over the world .. plus writes papers. Truthfully .. this subject is "above my pay grade" .. I really don't have a clue how doctors keep up on these things. I hate to say this .. but my guess is that perhaps a bit of ego might get involved also? Our type of Forum .. sharing might not work? BUT one of the things I REALLY like about Mayo Clinic is that they DO work as a team .. they DO consult with each other .. team work .. sharing cases with each other .. sharing problems .. ideas .. THAT is what I think is a wonderful part of going to Mayo Clinic! You get the brains of many if there is a problem!

Frankly I think as patients we can EASILY see just how difficult it is for doctors to "keep up" when they must see a new patient every 15 minutes (as now allotted by the insurance companies), keep all the new computerized medical records required .. PLUS even attempt to keep up on ANY new illness they are unaware of/do not remember from medical school .. or all the new medical treatments/medicines that have been discovered!!

I think that is WHY I am such a BIG advocate on our Forum of each of us doing our OWN "Due Diligence" .. printing out information .. AND taking that information to your doctor! Many on our Forum have said that information they have learned on our Forum is NEWS to their doctor! It may be sad .. but true .. "If it is to be .. it is up to ME!".

That said .. I still REALLY like your idea of contacting labs .. MANY OF US blasting them with letters requesting help with new antibiotics for our disease. Dr. Aksamit has told me that since it is a relatively rare disease .. there just has not been money for research. Maybe no money .. but maybe publicity?

By the way .. are ALL of you aware that if you shop at Amazon.com you can request a portion of your purchases be given to NTM?? I have been doing it for a couple of years!! It is called: Amazon Smile. You can find out about it at:
http://smile.amazon.com/gp/chpf/about/ref=smi_aas_redirect?ie=UTF8&*Version*=1&*entries*=0
NTM Info & Research, Inc.
Location: Coral Gables, FL | Year Founded: 2003
Mission: NTMir's mission is to save and improve lives by promoting support, research, education, early detection, and improved treatment programs for those with pulmonary NTM disease.

Jump to this post

Kate I see one of Dr Aksimet's fellow docs at Mayo. I was told that coughing and clearing might make a person feel better but that it has nothing to do with getting rid of MAC. I was also told by this doc it could "clear".
I go back 1-18 and will check again on these things.

I have cavitary MAC in one spot and have never coughed up much of anything. My sputum has been clear except except the first culture and for a lavage showing MAC. On the big 3 for 12-18 months.

What I guess I'm wondering is if you can have MAC not helped by clearing lungs as my doc has told me? Anyone else heard this?

Thanks! Very curious about this..

REPLY
Katherine, Alumni Mentor | @katemn | Dec 9, 2016

Kay, the coughing and clearing absolutely does NOT get rid of MAC. The purpose is that the mucus sitting there is a "breeding ground" for further mycobacterium. That is the reason for trying to get it up and out. Personally the coughing and clearing does NOT make me feel a bit better .. a bit of a pain in the batooty to do it each am and pm after inhaling my two prescription inhalers .. but I do it to get up the sputum .. sometimes clear sputum .. sometimes that dark yellow sputum.

This clearing may not work for others .. but it does for me. What I get up and out proves to me the benefit. I have always had sputum .. so do not have an opinion for those of you have never had sputum.

When you are on the antibiotics as you are .. it is the antibiotics that are "clearing" your lungs. For me .. I have been off antibiotics since May 2014 and am doing all I can to stay off! So for me .. coughing .. clearing .. getting up the sputum so it does not become a breeding ground for further mycobacterium is very important to me. I am happy as a clam being "stable". I am fully aware those nasty critters are still lying in wait in my lungs .. they don't get "cured" .. so I will do whatever I can not to give them "care and comfort" in my lungs! Katherine

REPLY
3 replies
Kay Strand | @kaystrand | Dec 9, 2016
In reply to @katemn "Kay, the coughing and clearing absolutely does NOT get rid of MAC. The purpose is that..." + (show)
@katemn

Kay, the coughing and clearing absolutely does NOT get rid of MAC. The purpose is that the mucus sitting there is a "breeding ground" for further mycobacterium. That is the reason for trying to get it up and out. Personally the coughing and clearing does NOT make me feel a bit better .. a bit of a pain in the batooty to do it each am and pm after inhaling my two prescription inhalers .. but I do it to get up the sputum .. sometimes clear sputum .. sometimes that dark yellow sputum.

This clearing may not work for others .. but it does for me. What I get up and out proves to me the benefit. I have always had sputum .. so do not have an opinion for those of you have never had sputum.

When you are on the antibiotics as you are .. it is the antibiotics that are "clearing" your lungs. For me .. I have been off antibiotics since May 2014 and am doing all I can to stay off! So for me .. coughing .. clearing .. getting up the sputum so it does not become a breeding ground for further mycobacterium is very important to me. I am happy as a clam being "stable". I am fully aware those nasty critters are still lying in wait in my lungs .. they don't get "cured" .. so I will do whatever I can not to give them "care and comfort" in my lungs! Katherine

Jump to this post

Kate
Just trying to understand. If you are free of MAC what is all the mucous you have to clear caused by? I know some people have reflux, asthma, etc. I just had a24 hour Impedence test and so not have reflux. I don't have asthma.

I do have post nasal drip and mucous in my throat and a bit of a runny nose.

Thanks for explaining clearing your lungs. Maybe my PND is the same thing? My doc seems unconcerned and said I needn't bother with any devices, that they make you feel better but don't help anything??

Thanks again.
Kay

Just trying to figure this out.

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