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.

heathert | @heathert | Dec 8, 2016

Another interesting article http://www.voanews.com/a/scientists-natural-immunity-fight-infection-without-antibiotics/3307299.html copy and paste as it doesnt appear to come up properly. We could try contact Catarina Svanborg of Lund University to see if they will try their technique on MAC!

REPLY
2 replies
heathert | @heathert | Dec 8, 2016
In reply to @heathert "Another interesting article http://www.voanews.com/a/scientists-natural-immunity-fight-infection-without-antibiotics/3307299.html copy and paste as it doesnt appear to come up properly. We..." + (show)
@heathert

Another interesting article http://www.voanews.com/a/scientists-natural-immunity-fight-infection-without-antibiotics/3307299.html copy and paste as it doesnt appear to come up properly. We could try contact Catarina Svanborg of Lund University to see if they will try their technique on MAC!

Jump to this post

oh it did come up properly when I pressed enter.

REPLY
heathert | @heathert | Dec 8, 2016
In reply to @heathert "Another interesting article http://www.voanews.com/a/scientists-natural-immunity-fight-infection-without-antibiotics/3307299.html copy and paste as it doesnt appear to come up properly. We..." + (show)
@heathert

Another interesting article http://www.voanews.com/a/scientists-natural-immunity-fight-infection-without-antibiotics/3307299.html copy and paste as it doesnt appear to come up properly. We could try contact Catarina Svanborg of Lund University to see if they will try their technique on MAC!

Jump to this post

I have emailed Catherina, will let you know if I hear back from her.

REPLY
Katherine, Alumni Mentor | @katemn | Dec 8, 2016

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.”

REPLY
9 replies
bruce668 | @bruce668 | Dec 9, 2016
In reply to @katemn "Bruce, I'm not familiar with the disseminated MAC that you mentioned, but did a quick Google..." + (show)
@katemn

Bruce, I'm not familiar with the disseminated MAC that you mentioned, but did a quick Google search. From what I could find "disseminated MAC disease is typically associated with defective cellular immunity such as hairy cell leukemia, chronic myelogenous leukemia and AIDS." This means it usually affects people with an already compromised immune system. Whether you have disseminated MAC or merely MAC, it is VERY important that you find a specialist who is familiar with MAC .. as MANY members of this Forum can attest to! Many members have found .. as you have .. that they have more knowledge of MAC than many of the doctors do.

That is WHY I told you it was SO important for you to do your "Due Diligence" and read past pages of this Forum to educate YOURSELF so you will truly understand your disease and it's ramifications. THEN you can seek out proper medical care for yourself and your wife. THEN you WILL NOT be put off by doctors " acting like it's nothing"! When you have educated yourself .. you will feel comfortable being your BEST medical advocate with doctors!

That said .. did you see our wonderful member Janet's .. @justjanet's recommendation of the clinic at UNC in Chapel Hill? You may also consider traveling to Mayo Clinic in Jacksonville, Florida. Might Chapel Hill or Jacksonville be an option? Mayo Clinic appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

As I told you before .. you are given but one body in this lifetime .. if you don't take care of it RIGHT NOW .. it can't take care of you for the rest of your journey in this lifetime. Bruce, I know you are in a REALLY tough time .. BUT you MUST gather together whatever energy and strength you can for this next REALLY important next step in finding the right doctor. If money is an issue .. perhaps this is the time to swallow your pride and call upon those who care about you .. explain the IMPERATIVE for you to travel to get the BEST care at this CRUCIAL point in your health. Sorry .. but this may be one of the most important decisions you may make for you and your wife. The old saying "If it is to be .. it is up to me!"

PLEASE keep us posted Bruce, we will be keeping you in our thoughts and sending the two of you LOTS of positive energy and LOTS of Hugs .. .. because all of us on this Forum have been on our own MAC journey .. and know it is a tough one .. though yours is a REALLY tough one! Katherine

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My wife and I both have disability lawyers. My wife's doctors are finally treating her disease as serious as it is, which is aassuring . I see my new family doctor today with high hopes of being referred to the proper specialist . I almost forgot , my disability lawyer told me I should have my hearing in the next two months . I pray they do what my health suggest and that is grant me disability .

REPLY
bruce668 | @bruce668 | Dec 9, 2016
In reply to @katemn "Bruce, I'm not familiar with the disseminated MAC that you mentioned, but did a quick Google..." + (show)
@katemn

Bruce, I'm not familiar with the disseminated MAC that you mentioned, but did a quick Google search. From what I could find "disseminated MAC disease is typically associated with defective cellular immunity such as hairy cell leukemia, chronic myelogenous leukemia and AIDS." This means it usually affects people with an already compromised immune system. Whether you have disseminated MAC or merely MAC, it is VERY important that you find a specialist who is familiar with MAC .. as MANY members of this Forum can attest to! Many members have found .. as you have .. that they have more knowledge of MAC than many of the doctors do.

That is WHY I told you it was SO important for you to do your "Due Diligence" and read past pages of this Forum to educate YOURSELF so you will truly understand your disease and it's ramifications. THEN you can seek out proper medical care for yourself and your wife. THEN you WILL NOT be put off by doctors " acting like it's nothing"! When you have educated yourself .. you will feel comfortable being your BEST medical advocate with doctors!

That said .. did you see our wonderful member Janet's .. @justjanet's recommendation of the clinic at UNC in Chapel Hill? You may also consider traveling to Mayo Clinic in Jacksonville, Florida. Might Chapel Hill or Jacksonville be an option? Mayo Clinic appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

As I told you before .. you are given but one body in this lifetime .. if you don't take care of it RIGHT NOW .. it can't take care of you for the rest of your journey in this lifetime. Bruce, I know you are in a REALLY tough time .. BUT you MUST gather together whatever energy and strength you can for this next REALLY important next step in finding the right doctor. If money is an issue .. perhaps this is the time to swallow your pride and call upon those who care about you .. explain the IMPERATIVE for you to travel to get the BEST care at this CRUCIAL point in your health. Sorry .. but this may be one of the most important decisions you may make for you and your wife. The old saying "If it is to be .. it is up to me!"

PLEASE keep us posted Bruce, we will be keeping you in our thoughts and sending the two of you LOTS of positive energy and LOTS of Hugs .. .. because all of us on this Forum have been on our own MAC journey .. and know it is a tough one .. though yours is a REALLY tough one! Katherine

Jump to this post

I want to say THANKS for all the information and sound advice . It helps just to have others that do understand and don't doubt what you say !!!

REPLY
Katherine, Alumni Mentor | @katemn | Dec 9, 2016
In reply to @katemn "Bruce, I'm not familiar with the disseminated MAC that you mentioned, but did a quick Google..." + (show)
@katemn

Bruce, I'm not familiar with the disseminated MAC that you mentioned, but did a quick Google search. From what I could find "disseminated MAC disease is typically associated with defective cellular immunity such as hairy cell leukemia, chronic myelogenous leukemia and AIDS." This means it usually affects people with an already compromised immune system. Whether you have disseminated MAC or merely MAC, it is VERY important that you find a specialist who is familiar with MAC .. as MANY members of this Forum can attest to! Many members have found .. as you have .. that they have more knowledge of MAC than many of the doctors do.

That is WHY I told you it was SO important for you to do your "Due Diligence" and read past pages of this Forum to educate YOURSELF so you will truly understand your disease and it's ramifications. THEN you can seek out proper medical care for yourself and your wife. THEN you WILL NOT be put off by doctors " acting like it's nothing"! When you have educated yourself .. you will feel comfortable being your BEST medical advocate with doctors!

That said .. did you see our wonderful member Janet's .. @justjanet's recommendation of the clinic at UNC in Chapel Hill? You may also consider traveling to Mayo Clinic in Jacksonville, Florida. Might Chapel Hill or Jacksonville be an option? Mayo Clinic appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

As I told you before .. you are given but one body in this lifetime .. if you don't take care of it RIGHT NOW .. it can't take care of you for the rest of your journey in this lifetime. Bruce, I know you are in a REALLY tough time .. BUT you MUST gather together whatever energy and strength you can for this next REALLY important next step in finding the right doctor. If money is an issue .. perhaps this is the time to swallow your pride and call upon those who care about you .. explain the IMPERATIVE for you to travel to get the BEST care at this CRUCIAL point in your health. Sorry .. but this may be one of the most important decisions you may make for you and your wife. The old saying "If it is to be .. it is up to me!"

PLEASE keep us posted Bruce, we will be keeping you in our thoughts and sending the two of you LOTS of positive energy and LOTS of Hugs .. .. because all of us on this Forum have been on our own MAC journey .. and know it is a tough one .. though yours is a REALLY tough one! Katherine

Jump to this post

Bruce, print out the information I've given you .. show it to your family doctor .. AND be your own best advocate today! Request that you be referred to an INFECTIOUS DISEASE DOCTOR .. they would be able to diagnose you if you do indeed have MAC. Good luck today .. keep us posted! Hugs! Katherine

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

wow sounds familiar alll right, I emailed Catharina but dont know it she speaks english, you may want to email her also. TB is on the urgent threat list but isnt there more people with MAC now? we should look into that and suggest it goes on the urgent list also, it would help our case alot.

REPLY
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.”

Jump to this post

Heather, just an update. Am working on getting together an "advocacy" group to continue with all the hard work you have done to try to get research labs to find new antibiotics for OUR MAC disease. You have worked SO hard . done so much research! I have kept all your notes and am waiting for an answer from one of our group that I have approached to head up a new "sub Forum" to further this effort! Hopefully if this person does not want to Mentor the new Forum .. someone else in our Forum will step up to the plate.

I will keep you posted. Members of our Forum writing to the different research labs .. telling about their own personal MAC journey .. AND requesting the various Labs to PLEASE pursue research into our MAC disease certainly MAY have an impact. Especially if we involve the American Heart Assn AND the NTM Assn in a writing campaign! I think your idea was just brilliant! Together .. in mass .. we can have an impact! Strength in numbers!! So again, thank you for the idea .. for getting it started .. and I will keep you posted! Hugs to you and to all! Katherine

REPLY
heathert | @heathert | Dec 9, 2016
In reply to @katemn "Bruce, I'm not familiar with the disseminated MAC that you mentioned, but did a quick Google..." + (show)
@katemn

Bruce, I'm not familiar with the disseminated MAC that you mentioned, but did a quick Google search. From what I could find "disseminated MAC disease is typically associated with defective cellular immunity such as hairy cell leukemia, chronic myelogenous leukemia and AIDS." This means it usually affects people with an already compromised immune system. Whether you have disseminated MAC or merely MAC, it is VERY important that you find a specialist who is familiar with MAC .. as MANY members of this Forum can attest to! Many members have found .. as you have .. that they have more knowledge of MAC than many of the doctors do.

That is WHY I told you it was SO important for you to do your "Due Diligence" and read past pages of this Forum to educate YOURSELF so you will truly understand your disease and it's ramifications. THEN you can seek out proper medical care for yourself and your wife. THEN you WILL NOT be put off by doctors " acting like it's nothing"! When you have educated yourself .. you will feel comfortable being your BEST medical advocate with doctors!

That said .. did you see our wonderful member Janet's .. @justjanet's recommendation of the clinic at UNC in Chapel Hill? You may also consider traveling to Mayo Clinic in Jacksonville, Florida. Might Chapel Hill or Jacksonville be an option? Mayo Clinic appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

As I told you before .. you are given but one body in this lifetime .. if you don't take care of it RIGHT NOW .. it can't take care of you for the rest of your journey in this lifetime. Bruce, I know you are in a REALLY tough time .. BUT you MUST gather together whatever energy and strength you can for this next REALLY important next step in finding the right doctor. If money is an issue .. perhaps this is the time to swallow your pride and call upon those who care about you .. explain the IMPERATIVE for you to travel to get the BEST care at this CRUCIAL point in your health. Sorry .. but this may be one of the most important decisions you may make for you and your wife. The old saying "If it is to be .. it is up to me!"

PLEASE keep us posted Bruce, we will be keeping you in our thoughts and sending the two of you LOTS of positive energy and LOTS of Hugs .. .. because all of us on this Forum have been on our own MAC journey .. and know it is a tough one .. though yours is a REALLY tough one! Katherine

Jump to this post

@bruce668 goodluck and sending you lots of well wishes to you and your wife, sounds like you both are on the right track to be helped the way you should have been along time ago. I know it is so frustrating when doctors dont believe us.We have to fight for everything, I I tell my specialist things she doesnt know, thanks to this forum I have learnt lots, and she is learning lots also. Keep us posted.

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