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.

irene5 Irene Estes | @irene5 | Jun 9, 2017
In reply to @pamelasc1 "Hello to everyone - I just received this as an email...it addresses one of the recent..." + (show)
@pamelasc1

Hello to everyone - I just received this as an email...it addresses one of the recent emails about the need for research. This sounds promising - I did not include the information about funding but of course they need it. Many of you may receive this email as well, but to get more information, I would just go to NTMGene. Pamela

NTM Info & Research
The NTM community has a unique opportunity to be a part of a groundbreaking genetic study, NTMGene.

This project is aimed at helping physicians and researchers better understand the population at risk based on their genetic background and to improve therapies with the future goal of a more personalized medical approach to treatment. NTMGene will study the genetic susceptibility for NTM-related disease and the pharmacogenomics of anti-NTM medications in the U.S.

Meet Dr. Mehdi Mirsaedi, MD, MPH, who has devoted his career to NTM research and is the principal investigator on NTMGene.

Tell us a little about yourself and how you choose your career-path.

I grew up in Iran with a father who had suffered from lung issues which was the catalyst for my many questions about respiratory infections. As early as middle school I was conducting lab experiments in my basement! I graduated from Tehran University of Medical Science and moved to the U.S. in 2006 for my fellowships in infectious diseases and advanced pulmonology. In 2015, I moved to Miami with my wife to concentrate on TB and Non-TB infections.

How have your NTM patients inspired you?

When I was at the University of Illinois-Chicago, I began to see more and more NTM patients. They were often female, older, tall and thin. I couldn't answer their cries of 'Why me?' which inspired me to continue to focus on the mystery of NTM-related disease. Why are some patients more susceptible to this infection? How do we get diagnoses tailored in the right way so therapies can be more effective?

How will NTMGene benefit those with NTM-related disease?

The prevalence of NTM-related disease is on the rise in North America in people older than 50 years of age - and the population is aging. NTM exceeds that of tuberculous but the why, when and how the infections occurs and to which patients remains largely unknown.

NTMGene is the only known study that will focus on the genomics of NTM-related disease on a national level. We need improved diagnosis and therapies but we still do not understand who is at risk. I believe NTMGene will provide a critical puzzle piece in that mystery. Knowing the genetic predisposition and pharmacogenomics will aid in superior treatment for this disease. And, this data will be a unique contribution to NTM science as a whole.

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How do I sign up?

REPLY
heathert | @heathert | Jun 9, 2017
In reply to @lindam272 "Tdrell, Thanks for that info! Is it too much trouble to locate the guidelines given for..." + (show)
@lindam272

Tdrell, Thanks for that info! Is it too much trouble to locate the guidelines given for future scanning so we can share those with our doctors? I was planning on asking my doc to order a CT scan for me to compare with earlier ones when I go back in the next 4 - 6 weeks and would like to have that information before calling if you still have it. Thanks so much! Linda

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I hear you @jentaylor. They have done the same to me, they just dont get it!

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Internal Med Doc | @internalmeddoc | Jun 9, 2017

I am an Internist and medical researcher with a particular interest in the mycobacteria including MAC/MAI. Would just like to mention that a sputum sample to detect MAC (AFB stain) is just an initial probe and not nearly enough to detect this disease in most cases, even when such sputum samples are repeated 3 or more times which is a good idea. Culture (AFB culture) is better and bronchoscopy to obtain samples and a possible biopsy even better. A lung scan or MRI is also a good idea prior to bronchoscopy to locate and target areas in the lung involved. Also, if there are any peripheral lymph nodes involved (enlarged or inflamed), these should be biopsied and sent to the lab. Also available are the more advanced PCRs for all tissue, sputum or bronchoscopy samples. MAC/MAI is not always an easy disease to detect. Hope this helps.

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20 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Jun 9, 2017
In reply to @internalmeddoc "I am an Internist and medical researcher with a particular interest in the mycobacteria including MAC/MAI...." + (show)
@internalmeddoc

I am an Internist and medical researcher with a particular interest in the mycobacteria including MAC/MAI. Would just like to mention that a sputum sample to detect MAC (AFB stain) is just an initial probe and not nearly enough to detect this disease in most cases, even when such sputum samples are repeated 3 or more times which is a good idea. Culture (AFB culture) is better and bronchoscopy to obtain samples and a possible biopsy even better. A lung scan or MRI is also a good idea prior to bronchoscopy to locate and target areas in the lung involved. Also, if there are any peripheral lymph nodes involved (enlarged or inflamed), these should be biopsied and sent to the lab. Also available are the more advanced PCRs for all tissue, sputum or bronchoscopy samples. MAC/MAI is not always an easy disease to detect. Hope this helps.

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Hi @internalmeddoc,
Thanks for joining the conversation. As you can see from reading through all the messages on this forum, our Connect members are very knowledgeable and have invaluable lived experience with MAC.
We look forward to getting to know more about you. Where do you practice? Do you see commonly see MAC patients?

REPLY
tdrell | @tdrell | Jun 9, 2017
In reply to @internalmeddoc "I am an Internist and medical researcher with a particular interest in the mycobacteria including MAC/MAI...." + (show)
@internalmeddoc

I am an Internist and medical researcher with a particular interest in the mycobacteria including MAC/MAI. Would just like to mention that a sputum sample to detect MAC (AFB stain) is just an initial probe and not nearly enough to detect this disease in most cases, even when such sputum samples are repeated 3 or more times which is a good idea. Culture (AFB culture) is better and bronchoscopy to obtain samples and a possible biopsy even better. A lung scan or MRI is also a good idea prior to bronchoscopy to locate and target areas in the lung involved. Also, if there are any peripheral lymph nodes involved (enlarged or inflamed), these should be biopsied and sent to the lab. Also available are the more advanced PCRs for all tissue, sputum or bronchoscopy samples. MAC/MAI is not always an easy disease to detect. Hope this helps.

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Dr....thank you for adding to our insights re NTM. I Have some questions re statements you shared:
-what is a PCR?
-What might be found when doing peripheral lymph node biopsy ( those enlarged or inflammed)
-Why MRI/lung scan prior to brochoscopy not CAT scan?
It is encouraging to know Internists are aware and researching NTM! And took time to share info with us! Tdrell

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Katherine, Alumni Mentor | @katemn | Jun 9, 2017

Dear All, I learned something new today I thought I'd share. I have ALWAYS requested a "hard" copy of my Mayo Clinic Sputum Culture reports for my personal files .. but frankly YEARS LATER have realized I was misreading the results!! Through the years on the Mycobacterium I have read "Few, Many, One Colony, Two Colony etc". I honestly thought "Few" meant just a few Mycobacterium .. hmmm. When you know better .. you share with your Connect Community! SO .. ALWAYS request copies of your Sputum Culture Reports .. AND question anything you do not understand .. I didn't (POOR Due Diligence!) and now in going back through past reports really see a fuller picture of my lung issues. BUT in my defense .. by requesting that report .. I DID find out WHY I was SO sick in February .. saw the 3 new bacteria .. called Mayo Clinic and requested an appt. So I have added the below to my File Cabinet! Hugs to all! Katherine

SPUTUM CULTURE REPORTS (Per Mayo Clinic Doctor 6/17) FEW: lab says "few" it usually indicates 2-10 colonies
MANY: not sure of the exact number of colonies needed to call it "many" but this description is always indicative of a high burden of bacteria
ONE COLONY: shows an improvement over "FEW OR MANY"

REPLY
48 replies
irene5 Irene Estes | @irene5 | Jun 10, 2017
In reply to @katemn "Dear All, I learned something new today I thought I'd share. I have ALWAYS requested a..." + (show)
@katemn

Dear All, I learned something new today I thought I'd share. I have ALWAYS requested a "hard" copy of my Mayo Clinic Sputum Culture reports for my personal files .. but frankly YEARS LATER have realized I was misreading the results!! Through the years on the Mycobacterium I have read "Few, Many, One Colony, Two Colony etc". I honestly thought "Few" meant just a few Mycobacterium .. hmmm. When you know better .. you share with your Connect Community! SO .. ALWAYS request copies of your Sputum Culture Reports .. AND question anything you do not understand .. I didn't (POOR Due Diligence!) and now in going back through past reports really see a fuller picture of my lung issues. BUT in my defense .. by requesting that report .. I DID find out WHY I was SO sick in February .. saw the 3 new bacteria .. called Mayo Clinic and requested an appt. So I have added the below to my File Cabinet! Hugs to all! Katherine

SPUTUM CULTURE REPORTS (Per Mayo Clinic Doctor 6/17) FEW: lab says "few" it usually indicates 2-10 colonies
MANY: not sure of the exact number of colonies needed to call it "many" but this description is always indicative of a high burden of bacteria
ONE COLONY: shows an improvement over "FEW OR MANY"

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It is not necessarily poor due diligence Katherine. I think when we don't know what questions to ask - we don't ask.

REPLY
Kay Strand | @kaystrand | Jun 10, 2017

Kate are you saying the Mayo did not contact you about the 3 new bacteria? YOU found them on the report not them? Wow that's a little scary if it's true. Please explain. Thanks, Kay

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22 replies
TML | @teresaml | Jun 10, 2017

Hello, I am new to you forum.
I would just like to begin by saying how helpful all of your comments/advice has been.
I was diagnosed with MAC and mild bronchietasis about a month ago and I'm on the 3 medication regime 3x a week.
I am so pleased to read that the side effects of these do diminish over time!

It took my doctors 4 months to make the diagnosis - first a cough that wouldn't move and went to pneumonia, then low pulmonary function results, a CT scan, and a bronchoscopy.
I had never heard of this infection before!

I live in Toronto Canada and wonder are there any other Canadians here?

REPLY
1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Jun 10, 2017
In reply to @teresaml "Hello, I am new to you forum. I would just like to begin by saying how..." + (show)
@teresaml

Hello, I am new to you forum.
I would just like to begin by saying how helpful all of your comments/advice has been.
I was diagnosed with MAC and mild bronchietasis about a month ago and I'm on the 3 medication regime 3x a week.
I am so pleased to read that the side effects of these do diminish over time!

It took my doctors 4 months to make the diagnosis - first a cough that wouldn't move and went to pneumonia, then low pulmonary function results, a CT scan, and a bronchoscopy.
I had never heard of this infection before!

I live in Toronto Canada and wonder are there any other Canadians here?

Jump to this post

Hi Teresa, welcome to the MAC group on Connect. You'll notice that i moved your message to the main discussion so you can be introduced to everyone. In particular, please meet fellow Canadians @tessie and @megan123.

Teresaml, we look forward to getting to know you. What side effects are you dealing with one month in of starting the big 3?

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