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(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.

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lindam272 | @lindam272 | 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)
Profile picture for Katherine, Alumni Mentor @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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Katherine, That's good information. I'm looking at my sputum culture results - the ones I have from my CF doctor - and have little clue about what I'm looking at and what it means. I never received results from my ID doc so will request those to compare. My last one in April says "rare WBC's, few epithelial cells, moderate gram positive cocci, moderate gram positive bacilli, few gram negative bacilli, usual oropharyngeal flora, no acid-fast bacilli seen. Only difference between that and the one I have from June 2016 is that the 2016 one says "usual oropharyngeal flora - heavy growth. The earliest one I have was from 4/2016 which didn't see any WBC's and says "moderate gram positive bacilli". I have an appointment with my ID doc next month and will put these in front of him along with the ones he has taken that I will get and ask him what all this means. So glad you were paying attention and caught the new bacteria!

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filis5352 | @afcardieri | Jun 10, 2017
In reply to @pamelasc1 "Hello to everyone - I just received this as an email...it addresses one of the recent..." + (show)
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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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Thank you so much, Everyone for all this info. In addition, so grateful to know this Doctor is researching NTM, this is very encouraging for us. Hugs to All-Filis

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Terri Martin, Volunteer Mentor | @windwalker | Jun 10, 2017
In reply to @teresaml "Many thanks Colleen. My side effects are the usual.... nausea and diarrhea, plus feeling very sleepy..." + (show)
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Many thanks Colleen.
My side effects are the usual.... nausea and diarrhea, plus feeling very sleepy about an hour after taking them.
My doctor has me going for blood test once a month. From reading these pages I will also discuss with him hearing and sight tests.
I was lucky enough to be sent to an eye specialist when they were trying to diagnose me so we have that base line to start from.

I had a wonderful consultation with a nutritionist that comes to my work place, Rebecca Dietziel from New York.
She gave me advice on probiotic foods, foods that have some antibiotic qualities and others that will help boost my own immune system.
I figure that if I follow some of these guidelines it's my own way of "fighting back" and it gives me a feeling of being in control of my infection!

Once again many thanks to everyone for your thoughts on this page.....

Oh, by the way I bought a Cambridge mask because of advice on the page..... USA would not ship to Canada so I got it from the UK.
It was here within 4 days!

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Hi Teresa, I have been wanting to boost my immune system too. Any
suggestions? Thank you, Terri
 

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Katherine, Alumni Mentor | @katemn | Jun 10, 2017
In reply to @kaystrand "Kate are you saying the Mayo did not contact you about the 3 new bacteria? YOU..." + (show)
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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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@kaystrand, Kay, you are absolutely correct. I really do not want to go into further detail as I really do not know what would have happened had I NOT requested that Sputum Culture Report. Suffice it to say it was a VERY upsetting situation to get SO sick .. not have a clue why .. get that report .. self diagnose etc. All I know is THAT is exactly what happened. Perhaps they WAIT for you to get that sick to medicate. I really don't want to discuss it further because I don't want to second guess .. all I know is it CONFIRMED to me our need to advocate for ourselves .. DO our OWN "due diligence" .. AND remember it IS OUR BODIES .. and that NO ONE cares about our bodies as much as we do so we darn better take care of the ONLY one given to us in this lifetime! (ALSO to QUESTION words on the report that we don't understand! Looking back over past reports I see things I NEVER questioned!! Too trusting plus too focused on just hearing the progress of ONE thing!) Hugs to all! Katherine

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Katherine, Alumni Mentor | @katemn | Jun 10, 2017

@teresaml Hello Teresa it sounds like you indeed have been reading our pages .. purchasing the Cambridge mask already! So glad you have found us .. Welcome! .. really a wonderful Community of supportive people who have walked your same journey! Feel free to ask any questions you might have .. and PLEASE feel free to share any tips you have discovered .. that is what our Connect is all about .. helping each other along the way! Hugs to you! Katherine

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unicorn | @unicorn | Jun 10, 2017

Hi all: I have been dealing with MAC and Bronch for about 5 years now, probably had it since the 70's. I've taken the meds for a few years, but disease always comes back, and the meds are barely tolerable now. Went to new doc at Mass. General who put me on a nebulizer breathing salt water vapor and albuterol, instead of taking meds. I think it just causes all the mucus to come up so one is less prone to infection. i actually haven't started it yet. i'vebeen off
pills for 5 months and am coughing up blood again. Seriously, so scary I just want a death pill, who wants to live like this?? I am 70 so I am sure that is a factor. xo hope all doing better!

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Katherine, Alumni Mentor | @katemn | Jun 10, 2017

Hello @internalmeddoc. I am curious .. where do you practice .. do your medical research?

I was diagnosed with MAI/MAC in 2011 at Mayo Clinic, Rochester MN by Dr. Timothy Aksamit .. a worldwide respected expert on MAC/MAI. I found his philosophy on initial diagnosing of MAC/MAI to be EVALUATING: Xrays .. sputum culture .. CT scans .. pulmonary function tests .. and my responses to his VARIOUS medical questions. He then puts it all together like a big puzzle and then based on his MAI/MAC experience decides if/when to treat with what antibiotic regimen.

I am going to be very frank with you as the Volunteer Mentor of this Mayo Clinic Connect .. I find your statement " 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." .. to be possibly misleading and frightening to our newer members just newly diagnosed.

I am not a doctor but even I know a bronchoscopy to be MUCH more invasive than the method used by Dr. Timothy Aksamit. IF/WHEN the MAC/MAI CANNOT be diagnosed by 3 consecutive sputum tests (the currently accepted "gold standard) there definitely are times when further means are necessary for diagnosis such as a bronchoscopy etc. But for you to say that " bronchoscopy to obtain samples and a possible biopsy even better" makes me very uncomfortable. I could not allow your statement to stand on our Forum that Newcomers might read and be frightened by.

Mayo Clinic abides by the Hippocratic Oath .. “first, do no harm” .. LESS IS MORE! Katherine. Volunteer Mentor

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Terri Martin, Volunteer Mentor | @windwalker | Jun 10, 2017
In reply to @unicorn "Hi all: I have been dealing with MAC and Bronch for about 5 years now, probably..." + (show)
Profile picture for unicorn @unicorn

Hi all: I have been dealing with MAC and Bronch for about 5 years now, probably had it since the 70's. I've taken the meds for a few years, but disease always comes back, and the meds are barely tolerable now. Went to new doc at Mass. General who put me on a nebulizer breathing salt water vapor and albuterol, instead of taking meds. I think it just causes all the mucus to come up so one is less prone to infection. i actually haven't started it yet. i'vebeen off
pills for 5 months and am coughing up blood again. Seriously, so scary I just want a death pill, who wants to live like this?? I am 70 so I am sure that is a factor. xo hope all doing better!

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OMG! What is your name, Unicorn? I feel so badly for you right now.  I
know you are tired of dealing with this, and that this disease saps you of
energy.  You must be proactive. Please do not give up. Ask your Dr. about
putting you on an inhaled antibiotic like Colistin or Tobramycin.  The
second one has helped me immensely.  Also, I have been on an
alternating monthly antibiotic for yrs now; it is not the BIG THREE that
everybody else takes. Be sure to ask your doctor how many cases of MAC they
have treated? Are they knowlegable? If they are not, get to an institution where
they study this.  I feel like there has to be some relief for you. Hang in
there and please keep us posted. We care!   Hugs - Terri M.
 

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filis5352 | @afcardieri | Jun 10, 2017
In reply to @internalmeddoc "I am an Internist and medical researcher with a particular interest in the mycobacteria including MAC/MAI...." + (show)
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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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Thank you so much for your info!!! I was diagnosed last January MAC. Yes, MAC is very difficult to detect especially if one goes to the doctor and is not aware of the disease. My symptoms were pain, burning, spasms in the chest, and coughing up stuff. In December, after my EKG looked good but my chest X-ray looked suspicious, the doc sent me for a CAT scan which revealed  bronchiectasis.  Through the bronchiscopy, I was diagnosed with MAC in the lungs.  Thank goodness for the big 3 meds I am currently on for 18 months. The question is, how does one keep from getting re-infected?  Thx, again-Filis

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Katherine, Alumni Mentor | @katemn | Jun 10, 2017
In reply to @unicorn "Hi all: I have been dealing with MAC and Bronch for about 5 years now, probably..." + (show)
Profile picture for unicorn @unicorn

Hi all: I have been dealing with MAC and Bronch for about 5 years now, probably had it since the 70's. I've taken the meds for a few years, but disease always comes back, and the meds are barely tolerable now. Went to new doc at Mass. General who put me on a nebulizer breathing salt water vapor and albuterol, instead of taking meds. I think it just causes all the mucus to come up so one is less prone to infection. i actually haven't started it yet. i'vebeen off
pills for 5 months and am coughing up blood again. Seriously, so scary I just want a death pill, who wants to live like this?? I am 70 so I am sure that is a factor. xo hope all doing better!

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@unicorn Hello! Do you have a first name .. more personal. Hmm, you have been through a tough time .. I'm really sorry. I REALLY question if you have been treated properly for your MAC. I was diagnosed with MAC/MAI .. was on the meds for THIRTY months .. BUT now I have been stable since 2014. I wonder IF you had the wrong "cocktail" .. wrong length of time for MAC .. just what/why. I am not a doctor but my guess the blood is the Bronchiectasis .. I cough up some blood also .. no big deal. If I was sitting in your shoes I would find a REALLY good infectious disease doctor and get to the BOTTOM of this .. Girlfriend .. I am 73 .. you get going .. a GOOD resource for finding a good ID doctor from my File Cabinet:

1. MAYO CONTACT INFO If you would like to seek help from Mayo Clinic appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63
** Minnesota campus for an appointment, here's the number: 507-538-3270
2. JEWISH NATIONAL HEALTH https://www.nationaljewish.org/treatment-programs/directory/ntm
3. DOCTORS-NYC From membe @ehliny: outstanding pulmonary doctor in NYC: Dr. Louis de Palo at Mt. Sinai Respiratory Clinic: (212) 241-5656. I also have a first-rate GERD doctor in Dr. Jonathan Aviv, 210 East 86th St: 212-722-5570. Dr. de Palo is not quick to prescribe antibiotics if you don't show full range of MAC symptoms. Dr Aviv (and I) believe there is a strong association between gastric reflux and lung disorders. I have a lot of confidence in both these physicians. Dr. Timothy Aksamit at MAYO Rochester had also recommended a NYC doctor for MAC, Dr. Doreen Adrizzo Harris, at NYU Pulmonary Medicine.
4. D0CTOR-ATLANTA GA From Membeer @janovr .. Dr. Colin Swenson Emory/St. Joseph’s Hospital Atlanta, GA
5. D0CTOR-CHICAGO Dr James Cook at Loyola, Chicago
6. D0CTOR-DENVER Dr Gwen Hewit in Denver as experts.
7. DOCTORS-AZ Member @lindam272, Linda He’s supposed to be one of the best. My ID doctor in Arizona, Dr. Justin Seroy, interned under Dr. Cook.
8. DOCTOR-FINDING A GOOD INFECTIOUS DISEASE DOCTOR https://www.ntminfo.org/patients/physician-referral-list move down the page to YOUR STATE

Also, read through the back pages of this Forum to educate yourself .. REALLY good information! Come back with any questions! Big Hugs! Katherine

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