1. < MAC & Bronchiectasis
Profile picture for Katherine, Alumni Mentor

(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.

Profile picture for Terri Martin, Volunteer Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 23, 2017
In reply to @unicorn "Who coughs up blood, hemoptysis...I need to know how to handle this. I went to er..." + (show)
Profile picture for unicorn @unicorn

Who coughs up blood, hemoptysis...I need to know how to handle this. I went to er twice, but don't bother now, seems to stop on its own, but need to hear others stories. Just to scary, afraid to travel. Did big 3, but can no longer tolerate pills, wiped out my bowels, rashes, hair thinning, eyesight reduced tinnitus, extreme weight loss, too tired to get up, although I did,( have big dog) Every symptom. Honestly, I was trying to die, even considered trying to get pneumonia!! It is just no way to live. So now, no pills, nebulizer and exercise, but I cough up blood and it is terrtifying. It is rare though...

Jump to this post

@heathert & @tutti, The tobramycin had the same effect on me when I first started on it. Was hoarse as a frog that first month. Now, it just thins the mucous and it gives my lungs a good cleaning while medicating.

REPLY
Profile picture for Terri Martin, Volunteer Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 23, 2017
In reply to @ncgirl "Hello all, I am new to the community. I am in NC and diagnosed with MAC..." + (show)
Profile picture for ncgirl @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

@ncgirl Hello ncgirl! Welcome to our forum. You've come to the right place to help you deal with this beast. I noticed you signed off as 'English", is that your name, first, last? First names are more personal. I am very glad that you took the time to read through past posts. You can learn a lot from them. I hope you saw the one recently posted on how to cut down on your chances of re-infecting yourself, if not, I can get you caught up on that. As for your question about a 'Cure'; at the moment there are very few that are completely cured. Nat'l Jewish Health claims that they have cured a few. You have youth on your side. That is good for two reasons, (1) your body is stronger and can tolerate the treatment better. (2) new & better drugs and treatments are coming out in the next 18-24 months. So, you may have a better shot at getting rid of it. My advice is that you continue to learn ALL that you can about this. It is very important that you do. This is a nasty bug that sometimes invites other nasty bugs. Don't want to scare you, because we can live a long life if we take good care of ourselves.
We all have noticed that there is a LOT of ex-healthcare workers that have MAC on this forum. It blows my mind, really. What kind of healthcare do you do? If you are a nurse, what kind?

P.S. I live in S.C., so we are neighbors!

REPLY
Profile picture for Jo Ann K
Jo Ann K | @jkiemen | Aug 23, 2017
In reply to @ncgirl "Hello all, I am new to the community. I am in NC and diagnosed with MAC..." + (show)
Profile picture for ncgirl @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

 

 

Can you give  me information about the new medications etc that might be available in the next 18-24 months

Jo Ann

 

REPLY
Profile picture for Terri Martin, Volunteer Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 23, 2017
In reply to @ncgirl "Hello all, I am new to the community. I am in NC and diagnosed with MAC..." + (show)
Profile picture for ncgirl @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

@jkiemen Jo Ann, I just posted them yesterday. Will see if I can find the post again and do a copy and paste on that.

REPLY
Profile picture for Terri Martin, Volunteer Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 23, 2017
In reply to @ncgirl "Hello all, I am new to the community. I am in NC and diagnosed with MAC..." + (show)
Profile picture for ncgirl @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

@jkiemen Yes, the new ones that will hopefully be approved next year is: Lipoquin/Linhalig it is an inhalable form of ciprofloxacin. The old name for it was Pulmaquin. The drug, Clofazamine is at the open label stage. and is supposed to be good for m. abscessus treatment. From what I have heard at the D.C. convention, the inhaled amikacin holds great promise and that is what they are putting you on.
Other good websites are videos of past conventions by NJH (National Jewish Health). Those are very informative.

REPLY
Profile picture for ncgirl
ncgirl | @ncgirl | Aug 23, 2017
In reply to @ncgirl "Hello all, I am new to the community. I am in NC and diagnosed with MAC..." + (show)
Profile picture for ncgirl @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

Hi Jo Ann K, if I remember correctly (I only saw photos as the infection was before my employment but I saw the patient in follow up) the rash was erythematous, maculopapular and followed an involved laser procedure. I am sure there was more - but its been so long I might blur cases. She had resulting scarring.
I have had Ig testing done and it was all within range. I will definitely look into the videos about water sources. Its very common to grow there, correct?

REPLY
Profile picture for ncgirl
ncgirl | @ncgirl | Aug 23, 2017

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!

REPLY
3 replies
Profile picture for heathert
heathert | @heathert | Aug 23, 2017
In reply to @ncgirl "Hi @windwalker my first name is English, and I'm a PA in dermatology although I worked..." + (show)
Profile picture for ncgirl @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!

Jump to this post

Hi @ncgirl I also read the Beating Bronch book and am trying to do alot of the suggestions, it is a great book, I wish someone out there with MAC had written a book like that also!

REPLY
Profile picture for Terri Martin, Volunteer 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)
Profile picture for ncgirl @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

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
Profile picture for Terri Martin, Volunteer 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)
Profile picture for ncgirl @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!

Jump to this post

@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
Please sign in or register to post a reply.