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.

Katherine, Alumni Mentor | @katemn | Jan 23, 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 .. this is really helpful information .. thanks so much for jumping in! Hugs! Katherine (do you have a first name?)

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Katherine, Alumni Mentor | @katemn | Jan 23, 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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@ginak, Gina, below are some notes I have made on GERDS:
GERDS
Helpful: *fluid restriction 6 ounces an hour including yogurt ice cream....no eating 3 hours before sleep...no laying on right side when sleeping....anatomically it encourages fluid from stomach to go into lungs.
* Prop up the bed. When you stick blocks under the head of your bed and raise it 6 to 8 inches, gravity will prevent the acids in your stomach from flowing into the esophagus during the night. Tight waistbands can aggravate your GERD symptoms. Wear looser clothing, especially at night. YOU COULD DO THIS .. which a good friend of ours did with his GERDS .. RAISED HIS BED VIA .. read the reviews $18. Home-it Adjustable Bed Risers or Furniture Riser bed lifts in Heights of 8, 5 or 3 Inches Heavy Duty Set of 4 bed riser
https://smile.amazon.com/Home-Adjustable-Risers-Furniture-Heights/dp/B00MH74S16/ref=sr_1_cc_1?s=aps&ie=UTF8&qid=1484857546&sr=1-1-catcorr&keywords=bed+raiser
Hope the above helps a bit! Hugs! Katherine

REPLY
Katherine, Alumni Mentor | @katemn | Jan 23, 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

Heather and @ehliny, I can only speak for myself .. but if I take my Aciphex RELIGIOUSLY early in the day .. I just do not have any GERDS issues .. if I goof up for whatever reason and take it later in the day .. oh pain! For whatever reason I have not seen a correlation between lung flare ups and my GERDS .. hmmm. Interesting how our bodies are so different! Hugs! Katherine

REPLY
Katherine, Alumni Mentor | @katemn | Jan 23, 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

Boomer .. yes it is best to wait IF you are 'stable' with NO mycobacterium colonizing. BUT your statement 'Once on the antibiotics there's no turning back ' is ONLY accurate IF you STOP treatment BEFORE you SHOULD .. ie BEFORE you have had 12 months of negative sputum cultures .. MEANING the antibiotic treatment has WORKED! Meaning you are now 'stable" from the antibiotic treatment.

I myself WAS colonizing .. I DID the antibiotic treatment with VERY bearable side effects .. THAT is why I wrote that initial 2007 post to MAYO CLINIC .. BECAUSE I did not want people to be afraid of the antibiotic treatment. BECAUSE I had read things on the internet that had scared me off treatment until I got a SECOND serious abscessus mycobacterium! I REALLY wish I had gone on the antibiotic treatment initially when I only had ONE mycobacterium .. didn't wait until I had TWO mycobacterium that had to be treated.

So, yes IF the mycobacterium is NOT growing/colonizing .. there is NO reason to begin the antibiotic treatment .. BUT it is imperative for people to do their 'due diligence' .. educate themselves .. AND make sure they continue with their follow up care to make sure they are STILL stable NOT colonizing!! Katherine

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Katherine, Alumni Mentor | @katemn | Jan 23, 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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@ginak, Gina, you are NOT alone .. this is a GREAT place to be .. we are ALL on this shared journey together .. we "get it" .. we've been there .. done that! Gina, don't give a moments energy to where/how you got MAC .. who gives a flying leap?! We've got it .. now we deal with it! Because it is rare .. no money for research .. lots of research but no real answers .. so put your energy into what you can control .. getting healthier .. and let go of what you can't control .. the outcome .. OR the reason! Hugs! Katherine

REPLY
Katherine, Alumni Mentor | @katemn | Jan 23, 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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Gina, BUT I never smoked a day in my life .. SO .. go figure!! Hugs! Katherine

REPLY
Katherine, Alumni Mentor | @katemn | Jan 23, 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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@windwalker, Terri, personally I think the day will come where they will also find a part of it is a genetic link. Hugs! Katherine

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jan 23, 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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<br><br><br><br><br>Most immunodeficient diseases are heritary.<br> <br><br>

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jan 23, 2017
In reply to @colapyrus "I have been diagnosed recently with MAI and bronchiectasis but have very few symptoms. I have..." + (show)
@colapyrus

I have been diagnosed recently with MAI and bronchiectasis but have very few symptoms. I have been reading the the previous posts (pages 1-10, 18-23) and have not read about many people having surgery to take out the damaged part of the lungs. My culture was negative for MAI for the first month and then it showed positive at the end. I'm assuming that means I don't have a high concentration of the bacteria in my lungs yet. The sample came from a bronchoscopy so I think it is reliable. My doctor has mentioned that I might be a good candidate for surgery but I'm not sure what that means. I haven't been to see an Infectious Disease dr yet or surgeon to talk about treatment but I thought I would ask the question here since you have been in the trenches so to speak. If they took out the right middle lobe (where the bronchiectasis is located) would I still be put on the meds treatment? Would they probably want me to be on the meds until I have the 12 months of negative sputum results before the surgery? Just wondering if anyone has any thoughts on this? Thanks. Jan

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<br><br><br><br><br>I know what you mean, that is why I only google in reputable sites like <br>Mayo, John Hopkins, NIH, etc.<br> <br><br>

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tdrell | @tdrell | Jan 23, 2017

Ladies......when we comment about getting a sputum specimin, I believe it should indicate "AFB smear."acid fast bacillus which mycobacterium are......and also "mycobacterium culture" which if I understand correctly is cultured differently than everyday sputum cultures.

Also I think part of the situation with GERD and NTM might be as Follows:
I Take a medication that lessens the acid in my stomach.....so NTM in there from drinking water or ice are not affected from an acid stomach environment.....stomach materials back out of stomach.....and are aspirated into lungs. And these materials from the stomach contain NTM which are now in lungs.if there is a suitable environment for them in lungs....they stay and multiply and start causing symptoms.

The above does NOT apply to the NTM that are inhaled directly into the lungs from soil or water sources such as hot tubs or showers.
Katherine or others....does this all sound correct? TerriD

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