(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

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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@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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@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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@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

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

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@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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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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@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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Im so glad you had the testing, it does make a huge difference for us. I appreciate Colleen describing it better than i could!

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@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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I find the same thing but never no what comes first gerd or lungs.

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@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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Thanks I am going to ask my doc about having these tests done.

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@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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I think it can be triggered by either.

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@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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RE: waiting until symptomatic to be treated; my pulmo specializes in MAC/NTM’s, found him through ntminfo.org…he would not recommend treatment so long as I remain stable, as it is very hard on the body with or without side effects (of which there are quite a few for many folks), similar to chemo which hits everything in the body while fighting the problem in one area. Once on the antibiotics there’s no turning back (or you risk developing antibiotic resistance), so he feels, and I agree, that if the infection is just sitting there and not growing, it’s best to wait and see.

Liked by tdrell

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@tdrell

Folks here is my report after my 6 day workup at National Jewish Health for MAC that was found in July 2016. I had had a cough with copious mucus for 2 years and no explanation was found after visits to ENT, NP, allergists, internists, GI……multiple tests. My local pulmonologist sent me to local ID doctor in OCtober……but thanks to you guys I found out about the workshop at NJH for NTM patients on September 17th in Denver. We were visiting our daughter coincidently (She lives in Denver) at the same time. So I attended the workshop. And began the process to be evaluated there.
My appointment with Dr Gwen Huitt at NJH began january 5 and the holistic analysis ended on january 13th.
An amazing place!
Unless the 3 daily sputum cultures come back with significant amt of NTM in 6 weeks…..

I do not show indications of the infection hence do not require treatment.

The reason MAC was found in my lungs when i had the bronchoscopy was that I have severe GERD and since it…NTM is in tap water….it had been aspirated into my lungs as I slept. Repeat Cat scan showed no signs of much…I dont have the typical NTM symptoms….fatigue,chills,weight loss,fever….only the cough and mucus.
The final outcome after tests and analysis:

-No NTM unless the cultures show different in 6 weeks
-GERD- a page of instructions ….weight loss, dietary and fluid restrictions,,head of bed that elevates 30degree, continue with nexium
-No asthma which i have been taking inhalors etc for 30 years
-Allergic rhinnitus-so have to use nasal wash once a day and continue with Flonase and singulaire
-Sleep apnea so will have to get CPAP with face mask.
So just think…..had i not gone to the experts, The local ID doctor had begun to write out the prescriptions for those potent medications 3.5 months ago!!! TDrell

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Thanks for all you do for all of us. Even the silent observers like me. We learn so much from you and the forum. We can always count on it being here. So thanks! And know that You are appreciated and you are loved! Becky

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@katemn

@pamelasc1 , Pamela, so glad you contacted me! The below link will take you to our Forum .. then you can read the past pages .. and/or post any questions you might have. Hope things go well for you in April .. keep us posted! Go to the below link .. PLUS I am going to repeat this post in that same Forum .. then you can just hit “Reply” to get started with any question you might have .. that should work just fine! Welcome Back! Hugs! Katherine
https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/?pg=20

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The unit I suggested for rental is the size of a carry-on of piece of
luggage and weighs a whole lot less than the full size unit people have in their
homes. You use a nose canula just like you would on the full size house models.
If you google the model I recommended plus add the word ‘rental’; links should
pop up. You can type in ‘oxygen rental’ and should get there as well. If you
have trouble finding one, let me know and I will find it for you. I own a Sequel
myself for travel. I need it for over nights and higher altitudes when flying.

 

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@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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Agreed! It is not important where you got it, it could have been anywhere.
I believe it has more to do with us having a lower than normal immune system.

 

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@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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1.   Hello- I sent several questions out a few days ago but I think they got lost somehow – here they are again:   1.      1.  this is a reply to"windwalker"  who mentioned the use of a rented portable oxygendevice when I am at higher altitudes.  Can you tell me how it works? Is ita mask you put over your face and sleep with all night?  I will talk to mydoctor about it and I thank you VERY much for bringing this to my attention. Pamela   2.  this is in reply to Terri M. who wrote aboutbeing able to walk farther eventually, but  using nebulized tobramyscin. Can you answer a few questions for me:I understand you areusing the tobramycin now, but did you first begin with the 18 month regimen ofthe 3 basic drugs?  How long did you take those, before going to thetobramycin?  Will you be using it now for the rest of your life?  Didthe MAC return at any point after that initial treatment?  If you havebeen stable, how long have you been stable with no coughing?   Thank you! Pamela     

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