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.

melrosedecosmo | @melrosedecosmo | Jan 22, 2017
In reply to @ginak "Hi, I was just recently diagnosed with MAI, not by a sputum test, but by a..." + (show)
@ginak

Hi, I was just recently diagnosed with MAI, not by a sputum test, but by a surgical lung biopsy and resection. I was searching for information when I found this site. I've read through quite a few pages and have found a lot of helpful information. I have been seeing a pulmonary Dr since January 2013 (when a CT scan showed multiple lung nodules). I have opted to not start antibiotics since I don't seem to have any symptoms aside from a slight cough and some throat clearing. I was also diagnosed with acid reflux. Should I also be seeing an infectious disease Dr. and I was wondering if anyone could recommend a good Dr in the NYC area?

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Hi Ehliny,What type of treatments is your GERD doctor prescribing? Does your pulmonary and Gastro doc work together to manage your health? Rosie

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Jennifer | @megan123 | Jan 22, 2017
In reply to @katemn "Dear 128128terry11t .. Terry , @annie112 .. Annie, @apportee, @bboxer .. ,@bruce668 .. bruce, @cila ....." + (show)
@katemn

Dear 128128terry11t .. Terry , @annie112 .. Annie, @apportee, @bboxer .. ,@bruce668 .. bruce, @cila .. Cila, @cathyt .. Cathy, @chinasmom .. , @coylemel333 .. Melody, @cowboy1997, @david1952 .. David, @del .. Del, @digmeme .. Linda, @elaine .. Elaine, @flib .. Flib, @fransky, @heathert .. Heather, @hopeful33250 .. , @imeehaigt, .. imee, TeresaH, @janovr .. Jan, @justjanet .. Janet, @jillnc, @jms7, @jewel8888 .. Julie, @josephene .. Jo, @judyem .. Judy, @katiemknor .. Winnie, @kaystrand .. kay S,@laneyk .. Elaine, @liliane .. Liliane, @lindam272 .. Linda, @lynnettehuler .. Lynn, @marier .. Marie, @margaretg .. Margaret, @mayoclinicseeker .. Pavitra , @maryjo2sell .. Maryjo, @marzz .. , @melissa23 .. Melissa, @mimi68 ..Linda, @nelisabeth .. Nelisabeth @Paula_MAC2007 .. Paula, @pfists .. Shari ,@pamelasc1 .. Pamela ,@reneeg .. Renee, @philomena .. Rosie MN, @rosemarya .. Rosemary, @shirleymac .. Shirley, @sophie1019 .. Sophie, @suzieapples, @tdrell .. terri, @tutti .. Lisa, @windwalker .. Terri, @worriedson, and anyone else I forgot to make note of!

Just a tip:
If you want to get to the VERY LAST POST ON OUR OUR FORUM .. OR TYPE A VERY NEW POST .. NOT A REPLY TO A POST:
1. Wherever you are on the Forum .. go to the VERY END of that particular page
2. At the bottom of the page you will see a square marked "LAST"
3. Hit "Last" .. it will take you to the very END/last page of our Mayo Clinic Connect

Hope your find this helpful! Hugs! Katherine

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Tk u so much for your info. U guys r amazing with your info. Toronto has great hosp but nothing like Mayo clinic

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ginak | @ginak | Jan 22, 2017
In reply to @ginak "Hi, I was just recently diagnosed with MAI, not by a sputum test, but by a..." + (show)
@ginak

Hi, I was just recently diagnosed with MAI, not by a sputum test, but by a surgical lung biopsy and resection. I was searching for information when I found this site. I've read through quite a few pages and have found a lot of helpful information. I have been seeing a pulmonary Dr since January 2013 (when a CT scan showed multiple lung nodules). I have opted to not start antibiotics since I don't seem to have any symptoms aside from a slight cough and some throat clearing. I was also diagnosed with acid reflux. Should I also be seeing an infectious disease Dr. and I was wondering if anyone could recommend a good Dr in the NYC area?

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Hi Ehliny, Thank you. I'll look into those 2. I appreciate all the information. Gina

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ginak | @ginak | Jan 22, 2017
In reply to @ginak "Thank you Terri, I'm going to check those out. I'll also continue to read through these..." + (show)
@ginak

Thank you Terri, I'm going to check those out. I'll also continue to read through these pages to see if I find anything.
Irene, I'm still teaching. I have another 2 years to go until I retire. With all the dust at work, and being in an old school building, I was wondering if that could have been where I got it. Does anyone have any ideas where they might have gotten in.? My Dr said it's a bacteria that's "every where" and I've read some people were saying hot tubs.
I hate to say I'm glad I'm not alone. It was very disheartening when I got my diagnosis and no one I spoke to had ever heard of it. I was very hopeful when I saw this forum and read about so many other people. I wish none of us had it but I'm happy to have found a place to talk about it.
Thank you all.
Gina

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Yes, I agree. I was just wondering if there was a common thread. I'm a former smoker, (smoked 22 years), but quit 23 years ago. I was diagnosed with mild emphysema and mild COPD. Dr thinks that's probably what made me susceptible.

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lindam272 | @lindam272 | Jan 22, 2017

Gina, Irene and others,

Here is a link that I pulled off of one of these discussion pages when I first went through them all in December.
http://www.thoracic.org/patients/lung-disease-week/2016/nontuberculous-mycobacteria-week/webinar.php

It's a webinar put out by the American Thoracic Society entitled Strategies for Reducing Environmental Exposure to NTM. In there, the doctor states that it can take 1-10 years to have MAC diagnosed so you very rarely know how you got it. I would expect that in 10 years time, I have potted many plants, dug up a bunch of soil, taken tons of showers, been in the hot tub at least once, and on and on. It's a guessing game with no answers typically.

Linda

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1 reply
irene5 Irene Estes | @irene5 | Jan 22, 2017
In reply to @lindam272 "Gina, Irene and others, Here is a link that I pulled off of one of these..." + (show)
@lindam272

Gina, Irene and others,

Here is a link that I pulled off of one of these discussion pages when I first went through them all in December.
http://www.thoracic.org/patients/lung-disease-week/2016/nontuberculous-mycobacteria-week/webinar.php

It's a webinar put out by the American Thoracic Society entitled Strategies for Reducing Environmental Exposure to NTM. In there, the doctor states that it can take 1-10 years to have MAC diagnosed so you very rarely know how you got it. I would expect that in 10 years time, I have potted many plants, dug up a bunch of soil, taken tons of showers, been in the hot tub at least once, and on and on. It's a guessing game with no answers typically.

Linda

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Awesome. Thank you. (Irene)

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Kelly, Alumna Mentor | @kdubois | Jan 22, 2017
In reply to @kwilbur "I, too, have a cavitary nodule in my right upper lobe but it has decreased in..." + (show)
@kwilbur

I, too, have a cavitary nodule in my right upper lobe but it has decreased in size. So I keep waiting. I don't know if I have MAC but continue with cscans every three months. Your testimony is encouraging. The bronchiecticus (the spelling defies me!) is something I can live with, but I am concerned about being able to work while taking meds if I do have a bronchoscopy and am diagnosed with MAC. I just celebrated half a year of working with a holiday party for over thirty people. Your story and others' experiences have truly helped me from panicking. When and if I do begin taking medication I certainly will be back for advice!

Happy New Year 2017 to us all! Kathryn

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@jewel8888 I had Pharmacogenomic testing done at Mayo - Rochester last March. These tests actually saved my life as we learned that I had been prescribed medications that I don't properly-metabolize for 12+ years because I have many polymorphisms. Please let me know if you have any questions.

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tdrell | @tdrell | Jan 22, 2017
In reply to @ginak "Hi, I was just recently diagnosed with MAI, not by a sputum test, but by a..." + (show)
@ginak

Hi, I was just recently diagnosed with MAI, not by a sputum test, but by a surgical lung biopsy and resection. I was searching for information when I found this site. I've read through quite a few pages and have found a lot of helpful information. I have been seeing a pulmonary Dr since January 2013 (when a CT scan showed multiple lung nodules). I have opted to not start antibiotics since I don't seem to have any symptoms aside from a slight cough and some throat clearing. I was also diagnosed with acid reflux. Should I also be seeing an infectious disease Dr. and I was wondering if anyone could recommend a good Dr in the NYC area?

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Ehliny...I think Mt Sinai might ...the NTMpart be a satelitte of NJH in Denver

REPLY
EHLINY | @ehliny | Jan 22, 2017
In reply to @ginak "Hi, I was just recently diagnosed with MAI, not by a sputum test, but by a..." + (show)
@ginak

Hi, I was just recently diagnosed with MAI, not by a sputum test, but by a surgical lung biopsy and resection. I was searching for information when I found this site. I've read through quite a few pages and have found a lot of helpful information. I have been seeing a pulmonary Dr since January 2013 (when a CT scan showed multiple lung nodules). I have opted to not start antibiotics since I don't seem to have any symptoms aside from a slight cough and some throat clearing. I was also diagnosed with acid reflux. Should I also be seeing an infectious disease Dr. and I was wondering if anyone could recommend a good Dr in the NYC area?

Jump to this post

That may be true. I'll look into it. Thanks!

REPLY
EHLINY | @ehliny | Jan 22, 2017
In reply to @ginak "Hi, I was just recently diagnosed with MAI, not by a sputum test, but by a..." + (show)
@ginak

Hi, I was just recently diagnosed with MAI, not by a sputum test, but by a surgical lung biopsy and resection. I was searching for information when I found this site. I've read through quite a few pages and have found a lot of helpful information. I have been seeing a pulmonary Dr since January 2013 (when a CT scan showed multiple lung nodules). I have opted to not start antibiotics since I don't seem to have any symptoms aside from a slight cough and some throat clearing. I was also diagnosed with acid reflux. Should I also be seeing an infectious disease Dr. and I was wondering if anyone could recommend a good Dr in the NYC area?

Jump to this post

Great question, Rosie they do NOT work together although each says he has a high regard for the other. My GERD doctor has written a book that can be found on Amazon. Or Google Dr Jonathan Aviv. I have noticed that whenever my lungs flare up, the GERD does as well, at the same time.

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