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.

donut | @donut | Jan 30, 2017
In reply to @debymacc "I would love to add to this discussion or chat with either of you. I was..." + (show)
@debymacc

I would love to add to this discussion or chat with either of you. I was diagnosed with this disease in 2008. I was on 3200mlg of high powered antibiotics for a year. I recovered completely. I am having some issues now and wondering how each of you are doing.

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Thank you again for your kind support. May God Bless, Donna

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gaylejean | @gaylejean | Jan 31, 2017
In reply to @tdrell "Ladies......when we comment about getting a sputum specimin, I believe it should indicate "AFB smear."acid fast..." + (show)
@tdrell

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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I believe the link came from you https://www.nationaljewish.org/ntmvideos2016

REPLY
Katherine, Alumni Mentor | @katemn | Jan 31, 2017
In reply to @tdrell "Ladies......when we comment about getting a sputum specimin, I believe it should indicate "AFB smear."acid fast..." + (show)
@tdrell

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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@gaylejean, thanks Gayle, for some reason I did not find it directly from your link but in fooling around I found the below link which has some interesting things on iT .. but MY antivirus wouldn't let me open up the doctor's presentation! I looked up above .. oh oh .. a porn site!! So now I'm going to delete the below link!! Hmmm what you don't happen upon if you're not careful! Innocuous little search like that!

AHAAA .. FOUND IT!! https://www.youtube.com/results?search_query=Dr.+Joseph+Falkinham .. go to it folks! Hugs! Katherine

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Feb 1, 2017
In reply to @debymacc "I would love to add to this discussion or chat with either of you. I was..." + (show)
@debymacc

I would love to add to this discussion or chat with either of you. I was diagnosed with this disease in 2008. I was on 3200mlg of high powered antibiotics for a year. I recovered completely. I am having some issues now and wondering how each of you are doing.

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<br><br><br><br><br>Hello! I am SOOOO glad you chose to go to the Mayo. You will definitely get <br>proper care there! Let us know how it went for you. Hugs, Terri M.<br> <br><br>

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Feb 1, 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>Oh,WOW! That would be great! Please private message me, we can <br>exchange phone numbers from there. Thank you so much for keeping me in your <br>thoughts. I hope you are doing well.  Hugs -Terri M.<br> <br> <br>

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Feb 1, 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>AGREED!<br> <br><br>

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Feb 1, 2017
In reply to @katemn "@maryjo2sell Maryjo interesting that you STILL go shingles even though you got the shot! WOW ...." + (show)
@katemn

@maryjo2sell Maryjo interesting that you STILL go shingles even though you got the shot! WOW . . I thought I was safe having gotten the vaccine .. hmmm! Hope you are not too bad with it .. my daughter in law had it (no vaccine) and was just miserable. Keep us posted with how it goes for you.

I did a bunch of more research on oral thrush .. am seeing someone next week on another issue .. am going to try to "slip in" this issue if I am able to! If I get any info .. I will for sure to share it on oral thrush! Hugs! Katherine

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<br><br><br><br><br>Hope they get you straight!<br> <br><br>

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Moderator
Colleen Young, Connect Director | @colleenyoung | Feb 1, 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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Hi @windwalker, please note that I removed your private email from the public discussion. We recommend using the private message function to exchange personal contact information. We don't want you getting unwanted spam email. 🙂

REPLY
Katherine, Alumni Mentor | @katemn | Feb 1, 2017
In reply to @katemn "@maryjo2sell Maryjo interesting that you STILL go shingles even though you got the shot! WOW ...." + (show)
@katemn

@maryjo2sell Maryjo interesting that you STILL go shingles even though you got the shot! WOW . . I thought I was safe having gotten the vaccine .. hmmm! Hope you are not too bad with it .. my daughter in law had it (no vaccine) and was just miserable. Keep us posted with how it goes for you.

I did a bunch of more research on oral thrush .. am seeing someone next week on another issue .. am going to try to "slip in" this issue if I am able to! If I get any info .. I will for sure to share it on oral thrush! Hugs! Katherine

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Dear All, GUESS WHAT! I was able to "slip" in the issue of my painful tongue with my nice Mayo Clinic Dermatologist .. and guess what?! After ALL my oral thrush remedies .. ALL the bottles of Mayo Magic Mouth Wash .. ALL my efforts .. all to naught! I do NOT have Oral Thrush as diagnosed by ONE Doctor! Now haven't we ALL been misdiagnosed?????

My ORIGINAL diagnosis by my dentist was "Geographic Tongue". BUT I was later told .. NO! "Geographic Tongue". is NOT painful so you MUST have Oral Thrush .. which I have now been treating with at LEAST 4 different prescription medications!

My nice Mayo Clinic Dermatologist .. this is WHY we go to 'mecca" .. Mayo Clinic! She said "Yes, USUALLY "Geographic Tongue". in NOT painful .. but in approximately 1-2% of the time it IS painful! Thanks a lot that I fall into that lousy 1-2% .. she said it frequently follows a 3-4 year pattern and can reoccur .. that they don't have a clue why/how/who gets it. Oh well .. at least now I know.

I am still going to follow my routine established for inhaler hygiene .. don't want to get oral thrush also! Just thought I'd let you know! Katherine

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Feb 1, 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

Jump to this post

<br><br><br><br><br>ok, thank you.<br> <br><br>

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