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.

Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 24, 2017
In reply to @ncgirl "Hello all, I am new to the community. I am in NC and diagnosed with MAC..." + (show)
@ncgirl

Hello all, I am new to the community. I am in NC and diagnosed with MAC initially Feb 2016 after 2 winters of several bouts of bronchitis and pneumonia but the diagnosis was shot down by our state expert and second opinion (I didn't meet all the diagnostic criteria and am "20 years too young" he said. I cultured M. fortuitum once and M. Avium another time, my pulmonologist @ Duke said the former was likely contaminant. So I was diagnosed a second time when I met all of the diagnostic criteria in March 2017 for M. Avium and started azithromycin, rifampin, and ethambutol and seem to be tolerating all just fine. I still have a productive cough although much less sputum production after 4 months and my energy level is *so* much better than prior. I was having a difficult time getting up in the morning and taking care of my two young kids - which is unacceptable as a single mother. I work in healthcare and strangely we had 3 patients in our clinic get the skin version of MAC (evidently very different, but I understand all of this is more common in the southeast).
Has anyone in this community experienced a "cure" of any significant duration? I have been taking supplements, probiotics, exercising and sleeping best I can and will start acupuncture Friday. Has anyone felt like any other supportive measures have made a difference? My flutter device makes my chest hurt so I stopped that but wonder if anyone has any other advice on how to get rid of this blasted thing and keep it gone. Its so frustrating because recent literature is few and far between. What is out there seems to read much the same. I am so hopeful to have another child - and there isn't much to read on that either. I count my blessings as there is treatment for this and at the same time I often have days where I wish I didn't have to think or worry about it.
I've read through many of these pages and you guys seem to be a great group. I'm terribly sorry to hear about Katherine - she seemed to be a bright light.

Thank you for your time in advance,
English

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If you google 'skin related mac infection images', some of gross pics come up. It is a rare condition. It happens when you have an open would and get the mac germs in the wound. But, I think you would have to be super suseptable to get that.

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 24, 2017
In reply to @ncgirl "Hi @windwalker my first name is English, and I'm a PA in dermatology although I worked..." + (show)
@ncgirl

Hi @windwalker my first name is English, and I'm a PA in dermatology although I worked in the Emergency Department enough years:) Thats exciting about the new inhaled drug. I wonder - I have been on Adavir (steroid + dilator) since it came about about 20 years ago - between that kicking my immunity down over time, I got very sick at the end of my second pregnancy, I got post flu pneumonia Jan 2015, got separated from an awful marriage and the resulting trauma/drama/intense stress of getting out of/away from that, I suppose in many ways its not shocking this happened? I have not come across the posts on getting reinfected - if you know just where they are sharing would be great - that said I can dig. I have a small bronchiectasis and hope to keep it that way. I found an ebook called "Beating bronchiectasis" by Daniel Pecaut. He is where I got the acupuncture idea - he doesn't have MAC - but who knows which one comes first?
Thanks @ginak @ginak , yes skin I think is even less common and unrelated to lungs from what I gather.
Does anyone else have any consistent favorite reading sources?

Thanks for the warm welcome!

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@ncgirl 'English' is different. How did your mom come by that name? Family name?
Re-infection: if you Google 'mac re-infection'. Re-infection can happen from your own drinking water (it sticks to your pipes), hot water tanks are full of it - need to turn the temp up to 131 degrees to kill it (I would be apprehensive to do that if I had small children in the home, that can scold, maybe at 125). Potting soil is full of bad mycobacteriums, as is outdoor soils (wear a mask if gardening). Avoid swimming pools, hot tubs, steam, hospitals, and nursing homes. Take a bath instead of a shower. These bacterias travel best in steam and vapor. I suggest that you learn ALL that you can about this. Since you do not have these diseases bad right now, you should try to keep it that way. I wish I had known what I know now, and perhaps I would not be in such bad shape.
This is a serious disease, please take it seriously. Good places to learn more about this is on Youtube. Google 'NTM conferences'. National Jewish Health has good videos. Just Google, Google, Google! I would suggest that you either keep a notebook just for bronchiecstasis/mac or start one on your computer (copy & paste) and start compiling notes that you find helpful. Make categories/sections in it. I keep a real one on my desk so that I can access info quickly when responding to our members, or keep up with what members are going through at the moment, or jog notes on what to look up if someone posts a weird diagnosis etc. I have categories of lists of probiotics, new meds and treatments, etc.
Try not to let this disease frighten you. You can live a quality life with it; it just requires extra caution. Hugs - Terri

REPLY
Kay Strand | @kaystrand | Aug 24, 2017
In reply to @ncgirl "Hello all, I am new to the community. I am in NC and diagnosed with MAC..." + (show)
@ncgirl

Hello all, I am new to the community. I am in NC and diagnosed with MAC initially Feb 2016 after 2 winters of several bouts of bronchitis and pneumonia but the diagnosis was shot down by our state expert and second opinion (I didn't meet all the diagnostic criteria and am "20 years too young" he said. I cultured M. fortuitum once and M. Avium another time, my pulmonologist @ Duke said the former was likely contaminant. So I was diagnosed a second time when I met all of the diagnostic criteria in March 2017 for M. Avium and started azithromycin, rifampin, and ethambutol and seem to be tolerating all just fine. I still have a productive cough although much less sputum production after 4 months and my energy level is *so* much better than prior. I was having a difficult time getting up in the morning and taking care of my two young kids - which is unacceptable as a single mother. I work in healthcare and strangely we had 3 patients in our clinic get the skin version of MAC (evidently very different, but I understand all of this is more common in the southeast).
Has anyone in this community experienced a "cure" of any significant duration? I have been taking supplements, probiotics, exercising and sleeping best I can and will start acupuncture Friday. Has anyone felt like any other supportive measures have made a difference? My flutter device makes my chest hurt so I stopped that but wonder if anyone has any other advice on how to get rid of this blasted thing and keep it gone. Its so frustrating because recent literature is few and far between. What is out there seems to read much the same. I am so hopeful to have another child - and there isn't much to read on that either. I count my blessings as there is treatment for this and at the same time I often have days where I wish I didn't have to think or worry about it.
I've read through many of these pages and you guys seem to be a great group. I'm terribly sorry to hear about Katherine - she seemed to be a bright light.

Thank you for your time in advance,
English

Jump to this post

Questions
1-If you turn your water heater up, you still mix the hot water with cold water that contains MAC so it's still in bath water etc since you can't bathe in 130 degree water?
2-If we drink water with MAC and don't have reflux, how does it get to our lung? Do they know if we can get MAC from drinking water? My doc says it has to be aerolized. Anyone out there explain this? It puzzles me. I boil water but do have a glass in restaurants.
Thanks gang
KayS

REPLY
terryb1 | @128128terry11t | Aug 24, 2017
In reply to @ncgirl "Hello all, I am new to the community. I am in NC and diagnosed with MAC..." + (show)
@ncgirl

Hello all, I am new to the community. I am in NC and diagnosed with MAC initially Feb 2016 after 2 winters of several bouts of bronchitis and pneumonia but the diagnosis was shot down by our state expert and second opinion (I didn't meet all the diagnostic criteria and am "20 years too young" he said. I cultured M. fortuitum once and M. Avium another time, my pulmonologist @ Duke said the former was likely contaminant. So I was diagnosed a second time when I met all of the diagnostic criteria in March 2017 for M. Avium and started azithromycin, rifampin, and ethambutol and seem to be tolerating all just fine. I still have a productive cough although much less sputum production after 4 months and my energy level is *so* much better than prior. I was having a difficult time getting up in the morning and taking care of my two young kids - which is unacceptable as a single mother. I work in healthcare and strangely we had 3 patients in our clinic get the skin version of MAC (evidently very different, but I understand all of this is more common in the southeast).
Has anyone in this community experienced a "cure" of any significant duration? I have been taking supplements, probiotics, exercising and sleeping best I can and will start acupuncture Friday. Has anyone felt like any other supportive measures have made a difference? My flutter device makes my chest hurt so I stopped that but wonder if anyone has any other advice on how to get rid of this blasted thing and keep it gone. Its so frustrating because recent literature is few and far between. What is out there seems to read much the same. I am so hopeful to have another child - and there isn't much to read on that either. I count my blessings as there is treatment for this and at the same time I often have days where I wish I didn't have to think or worry about it.
I've read through many of these pages and you guys seem to be a great group. I'm terribly sorry to hear about Katherine - she seemed to be a bright light.

Thank you for your time in advance,
English

Jump to this post

Would like to piggyback on Kay's questions and add the following:
How long does the bacteria live when not in water, soil, or other medium? Does it stay on our aerobika/nebulizer if we do not clean well? Why do we have to rinse the aerobika/nebulizer in distilled water after washing in regular?
Most of us do not boil water to drink. How safe is it to drink spring water?
I, as Kay, have much that is puzzling. If anyone has any answers, would be appreciated. Thank you, Terry

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 24, 2017
In reply to @ncgirl "Hello all, I am new to the community. I am in NC and diagnosed with MAC..." + (show)
@ncgirl

Hello all, I am new to the community. I am in NC and diagnosed with MAC initially Feb 2016 after 2 winters of several bouts of bronchitis and pneumonia but the diagnosis was shot down by our state expert and second opinion (I didn't meet all the diagnostic criteria and am "20 years too young" he said. I cultured M. fortuitum once and M. Avium another time, my pulmonologist @ Duke said the former was likely contaminant. So I was diagnosed a second time when I met all of the diagnostic criteria in March 2017 for M. Avium and started azithromycin, rifampin, and ethambutol and seem to be tolerating all just fine. I still have a productive cough although much less sputum production after 4 months and my energy level is *so* much better than prior. I was having a difficult time getting up in the morning and taking care of my two young kids - which is unacceptable as a single mother. I work in healthcare and strangely we had 3 patients in our clinic get the skin version of MAC (evidently very different, but I understand all of this is more common in the southeast).
Has anyone in this community experienced a "cure" of any significant duration? I have been taking supplements, probiotics, exercising and sleeping best I can and will start acupuncture Friday. Has anyone felt like any other supportive measures have made a difference? My flutter device makes my chest hurt so I stopped that but wonder if anyone has any other advice on how to get rid of this blasted thing and keep it gone. Its so frustrating because recent literature is few and far between. What is out there seems to read much the same. I am so hopeful to have another child - and there isn't much to read on that either. I count my blessings as there is treatment for this and at the same time I often have days where I wish I didn't have to think or worry about it.
I've read through many of these pages and you guys seem to be a great group. I'm terribly sorry to hear about Katherine - she seemed to be a bright light.

Thank you for your time in advance,
English

Jump to this post

@kaystrand, Excellent questions! I am glad to see you thinking this through. The experts say that once you have raised the hot water temperature, you should run the hot water first through the pipes for five minutes. This should scald out the MAC living in the the pipes. then proceed to use. The way we get it from drinking water is mostly because our faucets have that little screen in it. That screen causes tiny aerosolized water to come out. If you do raise the temp on your hot water tank then you can run it though the kitchen sink and flush out the MAC. Bear in mind, these are things that I have read and/or heard directly from the experts at the last NTM convention I attended. I am not repeating them as the gospel truth from my own mind, I am no expert. Little is known about these mycobacteriums, therefore: information can likely change or have conflicting opinions. I just posted on the main forum two sections about these two topics. Let me know if you do not see them. Thanks!

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 24, 2017
In reply to @ncgirl "Hello all, I am new to the community. I am in NC and diagnosed with MAC..." + (show)
@ncgirl

Hello all, I am new to the community. I am in NC and diagnosed with MAC initially Feb 2016 after 2 winters of several bouts of bronchitis and pneumonia but the diagnosis was shot down by our state expert and second opinion (I didn't meet all the diagnostic criteria and am "20 years too young" he said. I cultured M. fortuitum once and M. Avium another time, my pulmonologist @ Duke said the former was likely contaminant. So I was diagnosed a second time when I met all of the diagnostic criteria in March 2017 for M. Avium and started azithromycin, rifampin, and ethambutol and seem to be tolerating all just fine. I still have a productive cough although much less sputum production after 4 months and my energy level is *so* much better than prior. I was having a difficult time getting up in the morning and taking care of my two young kids - which is unacceptable as a single mother. I work in healthcare and strangely we had 3 patients in our clinic get the skin version of MAC (evidently very different, but I understand all of this is more common in the southeast).
Has anyone in this community experienced a "cure" of any significant duration? I have been taking supplements, probiotics, exercising and sleeping best I can and will start acupuncture Friday. Has anyone felt like any other supportive measures have made a difference? My flutter device makes my chest hurt so I stopped that but wonder if anyone has any other advice on how to get rid of this blasted thing and keep it gone. Its so frustrating because recent literature is few and far between. What is out there seems to read much the same. I am so hopeful to have another child - and there isn't much to read on that either. I count my blessings as there is treatment for this and at the same time I often have days where I wish I didn't have to think or worry about it.
I've read through many of these pages and you guys seem to be a great group. I'm terribly sorry to hear about Katherine - she seemed to be a bright light.

Thank you for your time in advance,
English

Jump to this post

@128128terry11t, Hi Terry. I do not know the answers to these questions. Would you be interested in doing the research online and get back to us on that? I know there is lots of info out there about it. Perhaps looking up papers written by Dr. Joseph Falkinham, or some of the NTM videos on Youtube. Or Google specific question. It is ok if you are not up to it. I am not feeling quite up to snuff lately or else I'd be all over it. Thank you

REPLY
terryb1 | @128128terry11t | Aug 24, 2017
In reply to @ncgirl "Hello all, I am new to the community. I am in NC and diagnosed with MAC..." + (show)
@ncgirl

Hello all, I am new to the community. I am in NC and diagnosed with MAC initially Feb 2016 after 2 winters of several bouts of bronchitis and pneumonia but the diagnosis was shot down by our state expert and second opinion (I didn't meet all the diagnostic criteria and am "20 years too young" he said. I cultured M. fortuitum once and M. Avium another time, my pulmonologist @ Duke said the former was likely contaminant. So I was diagnosed a second time when I met all of the diagnostic criteria in March 2017 for M. Avium and started azithromycin, rifampin, and ethambutol and seem to be tolerating all just fine. I still have a productive cough although much less sputum production after 4 months and my energy level is *so* much better than prior. I was having a difficult time getting up in the morning and taking care of my two young kids - which is unacceptable as a single mother. I work in healthcare and strangely we had 3 patients in our clinic get the skin version of MAC (evidently very different, but I understand all of this is more common in the southeast).
Has anyone in this community experienced a "cure" of any significant duration? I have been taking supplements, probiotics, exercising and sleeping best I can and will start acupuncture Friday. Has anyone felt like any other supportive measures have made a difference? My flutter device makes my chest hurt so I stopped that but wonder if anyone has any other advice on how to get rid of this blasted thing and keep it gone. Its so frustrating because recent literature is few and far between. What is out there seems to read much the same. I am so hopeful to have another child - and there isn't much to read on that either. I count my blessings as there is treatment for this and at the same time I often have days where I wish I didn't have to think or worry about it.
I've read through many of these pages and you guys seem to be a great group. I'm terribly sorry to hear about Katherine - she seemed to be a bright light.

Thank you for your time in advance,
English

Jump to this post

How about if I do you one better as they say. Dr. Joseph Falkinham is on the faculty at Virginia Tech University. I am on the faculty at Long Island University. I will attempt to CALL him horse thief to horse thief. I will tell him that I have been tasked by this forum to speak with him and ask him some questions so that we all are better educated with regard to NTM. I think that it is important that we take our time and prepare a list of questions. Once we have the questions, it will be my privilege to try to communicate with him. I look forward to hearing from you about this suggestion. Hope that you are soon feeling better. Terry

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 24, 2017
In reply to @ncgirl "Hello all, I am new to the community. I am in NC and diagnosed with MAC..." + (show)
@ncgirl

Hello all, I am new to the community. I am in NC and diagnosed with MAC initially Feb 2016 after 2 winters of several bouts of bronchitis and pneumonia but the diagnosis was shot down by our state expert and second opinion (I didn't meet all the diagnostic criteria and am "20 years too young" he said. I cultured M. fortuitum once and M. Avium another time, my pulmonologist @ Duke said the former was likely contaminant. So I was diagnosed a second time when I met all of the diagnostic criteria in March 2017 for M. Avium and started azithromycin, rifampin, and ethambutol and seem to be tolerating all just fine. I still have a productive cough although much less sputum production after 4 months and my energy level is *so* much better than prior. I was having a difficult time getting up in the morning and taking care of my two young kids - which is unacceptable as a single mother. I work in healthcare and strangely we had 3 patients in our clinic get the skin version of MAC (evidently very different, but I understand all of this is more common in the southeast).
Has anyone in this community experienced a "cure" of any significant duration? I have been taking supplements, probiotics, exercising and sleeping best I can and will start acupuncture Friday. Has anyone felt like any other supportive measures have made a difference? My flutter device makes my chest hurt so I stopped that but wonder if anyone has any other advice on how to get rid of this blasted thing and keep it gone. Its so frustrating because recent literature is few and far between. What is out there seems to read much the same. I am so hopeful to have another child - and there isn't much to read on that either. I count my blessings as there is treatment for this and at the same time I often have days where I wish I didn't have to think or worry about it.
I've read through many of these pages and you guys seem to be a great group. I'm terribly sorry to hear about Katherine - she seemed to be a bright light.

Thank you for your time in advance,
English

Jump to this post

@128128terry11t Terry, that sounds marvelous! He has been wonderful and generous to return all of my e-mails in a timely manner. I think that actually speaking with him might be even better. Hopefully, he would volunteer some info that we do not know to ask.

REPLY
terryb1 | @128128terry11t | Aug 24, 2017
In reply to @ncgirl "Hello all, I am new to the community. I am in NC and diagnosed with MAC..." + (show)
@ncgirl

Hello all, I am new to the community. I am in NC and diagnosed with MAC initially Feb 2016 after 2 winters of several bouts of bronchitis and pneumonia but the diagnosis was shot down by our state expert and second opinion (I didn't meet all the diagnostic criteria and am "20 years too young" he said. I cultured M. fortuitum once and M. Avium another time, my pulmonologist @ Duke said the former was likely contaminant. So I was diagnosed a second time when I met all of the diagnostic criteria in March 2017 for M. Avium and started azithromycin, rifampin, and ethambutol and seem to be tolerating all just fine. I still have a productive cough although much less sputum production after 4 months and my energy level is *so* much better than prior. I was having a difficult time getting up in the morning and taking care of my two young kids - which is unacceptable as a single mother. I work in healthcare and strangely we had 3 patients in our clinic get the skin version of MAC (evidently very different, but I understand all of this is more common in the southeast).
Has anyone in this community experienced a "cure" of any significant duration? I have been taking supplements, probiotics, exercising and sleeping best I can and will start acupuncture Friday. Has anyone felt like any other supportive measures have made a difference? My flutter device makes my chest hurt so I stopped that but wonder if anyone has any other advice on how to get rid of this blasted thing and keep it gone. Its so frustrating because recent literature is few and far between. What is out there seems to read much the same. I am so hopeful to have another child - and there isn't much to read on that either. I count my blessings as there is treatment for this and at the same time I often have days where I wish I didn't have to think or worry about it.
I've read through many of these pages and you guys seem to be a great group. I'm terribly sorry to hear about Katherine - she seemed to be a bright light.

Thank you for your time in advance,
English

Jump to this post

Sounds like a plan. I have Kay's questions (we met on this forum and have become very good friends!) and mine. I look forward to receiving your questions and anyone else that wants to have input. In the meantime, wishing you better health. Terry

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 24, 2017
In reply to @ncgirl "Hi @windwalker my first name is English, and I'm a PA in dermatology although I worked..." + (show)
@ncgirl

Hi @windwalker my first name is English, and I'm a PA in dermatology although I worked in the Emergency Department enough years:) Thats exciting about the new inhaled drug. I wonder - I have been on Adavir (steroid + dilator) since it came about about 20 years ago - between that kicking my immunity down over time, I got very sick at the end of my second pregnancy, I got post flu pneumonia Jan 2015, got separated from an awful marriage and the resulting trauma/drama/intense stress of getting out of/away from that, I suppose in many ways its not shocking this happened? I have not come across the posts on getting reinfected - if you know just where they are sharing would be great - that said I can dig. I have a small bronchiectasis and hope to keep it that way. I found an ebook called "Beating bronchiectasis" by Daniel Pecaut. He is where I got the acupuncture idea - he doesn't have MAC - but who knows which one comes first?
Thanks @ginak @ginak , yes skin I think is even less common and unrelated to lungs from what I gather.
Does anyone else have any consistent favorite reading sources?

Thanks for the warm welcome!

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@ncgirl Hi English. I had used acupuncture in the past and found it extremely helpful. I tried a guy here in my little town (the only guy in town) and was not impressed with him. I found that 'cupping' is very beneficial. Have you ever had that done?

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