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.

Katherine, Alumni Mentor | @katemn | Jun 21, 2017
In reply to @katemn "@maryjo2sell, Maryjo, 1st post I've seen also .. I'll check with Colleen as to maybe why!..." + (show)
@katemn

@maryjo2sell, Maryjo, 1st post I've seen also .. I'll check with Colleen as to maybe why! She is our Guru! Hugs! Katherine

Jump to this post

@maryjo2sell, Mary Jo, Dummy Me! What is NAC?? Hugs! Katherine

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ling123 | @ling123 | Jun 21, 2017
In reply to @katemn "@maryjo2sell, Maryjo, 1st post I've seen also .. I'll check with Colleen as to maybe why!..." + (show)
@katemn

@maryjo2sell, Maryjo, 1st post I've seen also .. I'll check with Colleen as to maybe why! She is our Guru! Hugs! Katherine

Jump to this post

Thank you for the advice. Actually I was thinking exactly the same thing. These days, you can never be too careful when buying something as important as medication in China. I will definitely make sure that I only inquire at reputable pharmacies there. Fortunately I can find a number of reputable pharmacies in Beijing. It would have been a lot more difficult if my family was located in smaller cities or rural areas.

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ling123 | @ling123 | Jun 21, 2017
In reply to @katemn "@maryjo2sell, Maryjo, 1st post I've seen also .. I'll check with Colleen as to maybe why!..." + (show)
@katemn

@maryjo2sell, Maryjo, 1st post I've seen also .. I'll check with Colleen as to maybe why! She is our Guru! Hugs! Katherine

Jump to this post

And, yes, China is listed on the web site that you've provided the link to. It has its own site in Chinese language.

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Katherine, Alumni Mentor | @katemn | Jun 21, 2017
In reply to @katemn "@maryjo2sell, Maryjo, 1st post I've seen also .. I'll check with Colleen as to maybe why!..." + (show)
@katemn

@maryjo2sell, Maryjo, 1st post I've seen also .. I'll check with Colleen as to maybe why! She is our Guru! Hugs! Katherine

Jump to this post

@ling123, Ling I would REALLY appreciate it if you can find out if 1. 75mg Time Release AMBROXOL/MUCOSOLVAN is available in Beijing 2. name/address/phone number of the reputable pharmacy you find. 3. The cost. Why? Because of my husband's health issues this is our last international trip .. ie ability to get the drug .. BUT my son travels extensively to Beijing on business! That could be a perfect resource for me in the future! If you find a good resource .. after your trip would you mind Private Messaging me with the above information? I would greatly appreciate it! Thank You! Hugs! Katherine

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ling123 | @ling123 | Jun 21, 2017
In reply to @katemn "@maryjo2sell, Maryjo, 1st post I've seen also .. I'll check with Colleen as to maybe why!..." + (show)
@katemn

@maryjo2sell, Maryjo, 1st post I've seen also .. I'll check with Colleen as to maybe why! She is our Guru! Hugs! Katherine

Jump to this post

I was wondering the same thing about NAC. So I googled the acronym. Correct me if I'm wrong, Mary Jo. I think it stands for N-Acetyl Cysteine. http://www.webmd.com/vitamins-supplements/ingredientmono-1018-n-acetyl%20cysteine.aspx?activeingredientid=1018

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ling123 | @ling123 | Jun 21, 2017
In reply to @katemn "@maryjo2sell, Maryjo, 1st post I've seen also .. I'll check with Colleen as to maybe why!..." + (show)
@katemn

@maryjo2sell, Maryjo, 1st post I've seen also .. I'll check with Colleen as to maybe why! She is our Guru! Hugs! Katherine

Jump to this post

@katemn, I definitely will, Katherine. Your request will go on top of my to-do list for my next trip.

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ling123 | @ling123 | Jun 21, 2017
In reply to @katemn "@maryjo2sell, Maryjo, 1st post I've seen also .. I'll check with Colleen as to maybe why!..." + (show)
@katemn

@maryjo2sell, Maryjo, 1st post I've seen also .. I'll check with Colleen as to maybe why! She is our Guru! Hugs! Katherine

Jump to this post

@katemn, Katherine, I think I will ask my sister-in-law to look into it now. She is pretty resourceful. I always think that if she can't find something then it doesn't exist.

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Cindy Courtney | @cindyrnc | Jun 21, 2017
In reply to @kathyg "Hello, Kate What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with..." + (show)
@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 a Registered Nurse Educator with a Masters Degree in Nursing. I have had Rheumatoid Arthritis for almost 30 years. I have been controlled well with Humira but also have Bronchiectasis due to MAC. My previous Rheumatologist just retired and his replacement said he's going to have to take me off the Humiria due to the MAC. I am being treated with Zithromax 500 mg three times a week and low dose prednisone. I am VERY UPSET to be taken off the Humira because I'm doing so well with my RA. The pulmonologist told me I could take it but now this newer Rheumatologist is going to talk to the pulmonologist about his concerns and I just know they are going to discontinue the Humira. Like I said I am very upset. I won't work if I come out of remission.
The pulmonologist didn't add the Rifampin or the Ethambicol but acted like he would if I wasn't better by my next visit. I will not take these antituberculin drugs. The Zithromax is bad enough with the GI problems. Any suggestions. I'm freaking out and I'm a Registered Nurse.

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jentaylor | @jentaylor | Jun 21, 2017
In reply to @kathyg "Hello, Kate What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with..." + (show)
@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

Jump to this post

Hi @cindyrnc, Welcome! You have come to a group with people at all stages of MAC/Bronchiectasis. You will find empathy & a lot of education, great information that people share! I'm an RN but can no longer work due to my lung/body health & I know there are other RN's here, too. As much as I thought I knew as an RN, I really didn't know as a patient having a severe lung disease. I have learned SO much from everybody here! It's an amazing source of first hand knowledge! There are many words of wisdom to be shared! I'm excited for you to find a such a great group! I hope you find the answers to the questions you have, I believe you will. And also, if you are having a bad day (or month+), this is a great place to be heard & have other people cheer you on through these difficult & challenging times!

I get the "freaking out" part quite well, as do most of the people in this group. You are in great hands!

~Jen 🙂

REPLY
tdrell | @tdrell | Jun 21, 2017
In reply to @kathyg "Hello, Kate What a coincidence that my first name is Katherine/Kathy. I was just diagnosed with..." + (show)
@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

Jump to this post

CindyRnc..welcome to our site.If i were in your position....
I would immediately go on line to Nationaljewish.org and call them to see about having an appt with them....they specialize in Respiratory, Allergy AND Immunology. They practice coordinated care medicine under one roof....not a hospital but a huge clinic...no relation to religion at this point.
When MAC was found on my bronchoscopy ...immediately I was referred to ID Dr to be treated with Antibiotics....by then i knew i needed a second opinion hence refused to start meds
..went to NJH in January who after review said NO ....NO MEDS.....issue is GERD Refluxing our SE wisonsin NTM containing water into my lungs.....of course the abscence of NTM infection was confirmed with a negative CAT scan and 3 step sputum cultures.
I am a retired RN with a masters in Nursing who practiced /taught for 50 Years.Tdrell

..

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