(MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS

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:

  1. Document Title Example:  Mayo Clinic Connect MAI/MAC Information
  2. 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
  3. 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!

KateMN

@colleenyoung

Hi all,
As many of you already know, Katherine has requested a leave of absence from her mentoring duties to take care of her health. Read more here: http://mayocl.in/2gNlvFR

I’m pleased to announce that @windwalker has joined the volunteer Mentor troupe. Thank you, Terri!
Please join me in congratulating Terri in her new role.
Colleen

PS: Here is more information about Mentors, who they are and what they do https://connect.mayoclinic.org/about-our-moderators-and-mentors/

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Yea fellow Terri @windwalker and glad you’re taking a well deserved break, Katherine!

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@colleenyoung

Hi all,
As many of you already know, Katherine has requested a leave of absence from her mentoring duties to take care of her health. Read more here: http://mayocl.in/2gNlvFR

I’m pleased to announce that @windwalker has joined the volunteer Mentor troupe. Thank you, Terri!
Please join me in congratulating Terri in her new role.
Colleen

PS: Here is more information about Mentors, who they are and what they do https://connect.mayoclinic.org/about-our-moderators-and-mentors/

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Thank you Terri for helping as mentor. Hope Katherine and her hubby will have some peace of mind about their very significant health issues.

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@colleenyoung

Hi all,
As many of you already know, Katherine has requested a leave of absence from her mentoring duties to take care of her health. Read more here: http://mayocl.in/2gNlvFR

I’m pleased to announce that @windwalker has joined the volunteer Mentor troupe. Thank you, Terri!
Please join me in congratulating Terri in her new role.
Colleen

PS: Here is more information about Mentors, who they are and what they do https://connect.mayoclinic.org/about-our-moderators-and-mentors/

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I hear you, Irene. Katherine has and is going through a lot. She is on my mind every day.

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windwalker and Katherine….Kudos to Terri for taking on the important role that Katherine so expertly and cleverly has been handling. And Katherine….am sending all kinds of best wishes for you and your hubby to get back on your capable feet. love tdrell aka terri

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Thank you, Terri. I have comfort knowing you are in the wings, so to speak, on this forum. You always have good input and are a part of keeping this group together. Hugs from the other Terri!

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@kathyg

Hello, Kate

What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with MAC, found out via a phone call from my Mayo doctor last night. I have been coughing for over 14 months and I just kept trying to get someone to tell me why….. Now that I have the diagnosis, what do I do? My first reaction was to try to get more information and that is how I stumbled across your posting. My doctor, Dr. Mullen at Mayo in Rochester, is a very nice man and he explained that some of the side effects of the treatment can be worse than the disease. So, I rejected the idea. When I saw your post saying that the reality may not be as bad as the hype, it gives me a different perspective. Would you be willing to share more of your experience with me? The doctors can only tell you what the books tell them unless they have had a patient who has gone through the process. Even then, different folks can have differing reactions. I am a 58 year old, recently retired (in part due to the coughing with the embarrassing results), I am overweight so the shortness of breath was attributed to that…..

Thank you, Kathy

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I live in Southeastern Wisconsin in Walworth County, rural with well water. The post office is Elkhorn Wisconsin near Lake Geneva. When I got ill, I was living

in the City of Delavan Wisconsin which is city water etc.

 

JO Ann

 

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@kathyg

Hello, Kate

What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with MAC, found out via a phone call from my Mayo doctor last night. I have been coughing for over 14 months and I just kept trying to get someone to tell me why….. Now that I have the diagnosis, what do I do? My first reaction was to try to get more information and that is how I stumbled across your posting. My doctor, Dr. Mullen at Mayo in Rochester, is a very nice man and he explained that some of the side effects of the treatment can be worse than the disease. So, I rejected the idea. When I saw your post saying that the reality may not be as bad as the hype, it gives me a different perspective. Would you be willing to share more of your experience with me? The doctors can only tell you what the books tell them unless they have had a patient who has gone through the process. Even then, different folks can have differing reactions. I am a 58 year old, recently retired (in part due to the coughing with the embarrassing results), I am overweight so the shortness of breath was attributed to that…..

Thank you, Kathy

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I wanted to let you all know, in case your MD’s have not checked. My ID that I saw for the first time, did IGG, IGM antibodies and my IGG came back low. I just

found that out myself by looking at my results. The MD has not discussed it with me yet.

I am wondering if any one else had them done.

 

JO Ann

 

 

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@colleenyoung

Hi all,
As many of you already know, Katherine has requested a leave of absence from her mentoring duties to take care of her health. Read more here: http://mayocl.in/2gNlvFR

I’m pleased to announce that @windwalker has joined the volunteer Mentor troupe. Thank you, Terri!
Please join me in congratulating Terri in her new role.
Colleen

PS: Here is more information about Mentors, who they are and what they do https://connect.mayoclinic.org/about-our-moderators-and-mentors/

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Thanks Terri for all the time you put into this group and your great wealth of info!
Dear Katherine, I look forward to the day you come back to us happy and well, thinking of you. Heather

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@kathyg

Hello, Kate

What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with MAC, found out via a phone call from my Mayo doctor last night. I have been coughing for over 14 months and I just kept trying to get someone to tell me why….. Now that I have the diagnosis, what do I do? My first reaction was to try to get more information and that is how I stumbled across your posting. My doctor, Dr. Mullen at Mayo in Rochester, is a very nice man and he explained that some of the side effects of the treatment can be worse than the disease. So, I rejected the idea. When I saw your post saying that the reality may not be as bad as the hype, it gives me a different perspective. Would you be willing to share more of your experience with me? The doctors can only tell you what the books tell them unless they have had a patient who has gone through the process. Even then, different folks can have differing reactions. I am a 58 year old, recently retired (in part due to the coughing with the embarrassing results), I am overweight so the shortness of breath was attributed to that…..

Thank you, Kathy

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I was diagnosed in June 2015 after having pneumonia. I had a bronchoscopy because I could not produce any sputum and that is how is was discovered. I currently

seen by a pulmonologist at St Luke’s.  They said it was MAI. I then had a biopsy of a nodule that also had MAI. I currently have not yet been treated with the 3 Antibiotics.  I did see an Infectious Disease MD on July 7, 2017 and he had me do some labs to

see if I had any Immune Deficiencies.

One of the 3 components came back a little low and have not yet been able to discuss the implications of that. But then when you go to the internet and looks

stuff up you can see all sorts of scary things. So, I hope to find out more about that..  When I was diagnosed, I was living in a condo with city water but one of the MD’s said that MAI is mostly from soil. So maybe I inhaled some dirt with it.  I really don’t

have much of a cough but usually feel like I have more post nasal drip and throat irritation type sensations.

 

Where are you being seen? How long have you been diagnosed and most importantly, how are you doing?

The ID person told me this area has allot of cases.

Jo Ann

 

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@kathyg

Hello, Kate

What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with MAC, found out via a phone call from my Mayo doctor last night. I have been coughing for over 14 months and I just kept trying to get someone to tell me why….. Now that I have the diagnosis, what do I do? My first reaction was to try to get more information and that is how I stumbled across your posting. My doctor, Dr. Mullen at Mayo in Rochester, is a very nice man and he explained that some of the side effects of the treatment can be worse than the disease. So, I rejected the idea. When I saw your post saying that the reality may not be as bad as the hype, it gives me a different perspective. Would you be willing to share more of your experience with me? The doctors can only tell you what the books tell them unless they have had a patient who has gone through the process. Even then, different folks can have differing reactions. I am a 58 year old, recently retired (in part due to the coughing with the embarrassing results), I am overweight so the shortness of breath was attributed to that…..

Thank you, Kathy

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I am being seen at Froedtert. I was diagnosed with mac last year in july by my pulmonogist. I am still on the “big 3”, i had two areas in my lungs, one is gone and the other spot is still there. Well now i am seeing an infectious disease doctor, as a matter of fact, saw her today. She states that my pulmo doc sent my sputum test to denver. They are waiting for results to come back, which should be in about six weeks.once results come back, we will decide on a different treatment. I feel great, work every day and you would never know i had this nasty bug….

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@kathyg

Hello, Kate

What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with MAC, found out via a phone call from my Mayo doctor last night. I have been coughing for over 14 months and I just kept trying to get someone to tell me why….. Now that I have the diagnosis, what do I do? My first reaction was to try to get more information and that is how I stumbled across your posting. My doctor, Dr. Mullen at Mayo in Rochester, is a very nice man and he explained that some of the side effects of the treatment can be worse than the disease. So, I rejected the idea. When I saw your post saying that the reality may not be as bad as the hype, it gives me a different perspective. Would you be willing to share more of your experience with me? The doctors can only tell you what the books tell them unless they have had a patient who has gone through the process. Even then, different folks can have differing reactions. I am a 58 year old, recently retired (in part due to the coughing with the embarrassing results), I am overweight so the shortness of breath was attributed to that…..

Thank you, Kathy

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Thanks for sharing with me. How did you find out you had MAC. Are you having any side effects from the meds. My doctors keep telling me to hold off. Were you

having allot of symptoms?

They are telling me they want sputum to send to Denver to the National Jewish Hospital Center where they have the bigger center for this. I can’t seem to produce

any sputum.

Do they have allot of patients they follow there with MAC?

Jo Ann

 

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@cila

Hi Catherine, when you inhale amikacin did you do coughing while your inhaling it? Also my throat is hurting and I’m losing a little bit of my voice. I’m not informing my pulmonary Dr. b/c I called NJH and I got an appt. there. Thanks for everything. I’m so glad I’m on this forum you guys help me a lot.

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Heathert…tomorrow is your CAT scan? Will think of you! When do u get results? Tdrell

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@windwalker

Thank you, Terri. I have comfort knowing you are in the wings, so to speak, on this forum. You always have good input and are a part of keeping this group together. Hugs from the other Terri!

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All the best to Katherine and her husband thinking of you and want to thank you for your great advice. Because of you, I got more assertive and called my respiratory Dr and requested further testing since I can’t bring up sputum and they are scheduling me for another CT Scan following with a Bronchoscopy. I wouldn’t have asked for it without your advice, so thank you and get better fast because you are one heck of a smart angel!
I will pray for you.

Terri, thank you so much for taking over you also are a very caring Mentor.

Hugs to you all, Andrée

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@kathyg

Hello, Kate

What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with MAC, found out via a phone call from my Mayo doctor last night. I have been coughing for over 14 months and I just kept trying to get someone to tell me why….. Now that I have the diagnosis, what do I do? My first reaction was to try to get more information and that is how I stumbled across your posting. My doctor, Dr. Mullen at Mayo in Rochester, is a very nice man and he explained that some of the side effects of the treatment can be worse than the disease. So, I rejected the idea. When I saw your post saying that the reality may not be as bad as the hype, it gives me a different perspective. Would you be willing to share more of your experience with me? The doctors can only tell you what the books tell them unless they have had a patient who has gone through the process. Even then, different folks can have differing reactions. I am a 58 year old, recently retired (in part due to the coughing with the embarrassing results), I am overweight so the shortness of breath was attributed to that…..

Thank you, Kathy

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Hi Jo Ann. I am not sure who you are directing this question to. In the future, it would work better to highlight the @ address of the person you are responding to and mention their name. Do you know how to log in to get onto the forum properly? I did it for the longest time just replying straight out of my e-mail. It doesn’t work well that way. Let me know if you need help with that.

Now, to answer your questions: I went five months with several misdiagnosis’ before a Pulmonologist at a research hospital found the MAC. My tests were by sputem and bronchoscopy. My doctor at the Mayo said he doesn’t believe in putting patients on the BIG THREE meds right away on their first infection because he said 90% go away on their own. He’d rather watch the infection a bit before deciding to treat. That is because those drugs they use are hard on the body, especially the liver. A good pulmonologist should have the means to administer an inhalation method using 10% sodium chloride to force the mucous (sputem) up and out of your lungs to get the sample. National Jewish Health is one of the best institutions to have your sputem tested properly. They are also among the best for treating MAC. I hope this all helped. Feel free to ask all of questions you want, there are a lot of knowlegible people on this forum.

Terri M.

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@kathyg

Hello, Kate

What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with MAC, found out via a phone call from my Mayo doctor last night. I have been coughing for over 14 months and I just kept trying to get someone to tell me why….. Now that I have the diagnosis, what do I do? My first reaction was to try to get more information and that is how I stumbled across your posting. My doctor, Dr. Mullen at Mayo in Rochester, is a very nice man and he explained that some of the side effects of the treatment can be worse than the disease. So, I rejected the idea. When I saw your post saying that the reality may not be as bad as the hype, it gives me a different perspective. Would you be willing to share more of your experience with me? The doctors can only tell you what the books tell them unless they have had a patient who has gone through the process. Even then, different folks can have differing reactions. I am a 58 year old, recently retired (in part due to the coughing with the embarrassing results), I am overweight so the shortness of breath was attributed to that…..

Thank you, Kathy

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Jo Ann, I meant to add that just because MY doctor doesn’t believe in treatment right off the bat with the BIG THREE drugs on first diagnosis, doesn’t mean that is the absolute course. Doctor’s opinions vary on that. This disease is kind of elusive in that many doctors are still trying to figure it out. My doctor doesn’t believe in immediate treatment, whereas others may feel like treat it before it damages too much lung tissue. It really depends on the degree of infection I think.

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