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.

Katherine, Alumni Mentor | @katemn | Jan 28, 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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@windwalker, Terri thank you for the thought! I do eat yogurt .. love my protein shake that I started doing when I was doing my antibiotic treatment .. it was suggested as a way to get more nutrition .. I have continued it. Truthfully I think one of my issues is not being regular about using my Magic Mouthwash since it must be kept in the refrigerator. But I am seeing a Dermatologist on Monday regarding an entirely different issue .. I am hoping to "slip" this issue in also! Hugs! Katherine

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Katherine, Alumni Mentor | @katemn | Jan 28, 2017
In reply to @maryjo2sell "I have used our similar local "compound" for geographic tongue. So sorry you got the thrush...." + (show)
@maryjo2sell

I have used our similar local "compound" for geographic tongue. So sorry you got the thrush. It is a problem with the inhalers. I only use mine when really needed- Symbicort or Spiriva. I have found that they can help clear up my airways a bit after I have just done my own " clearing". Right now I am taking extra meds as I got shingles over the weekend. I am lucky it is not a big, bad case, as I had the vaccine. But still, not a lot of fun!
I really appreciate your forum and all the work you must do! Have a good night!

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@windwalker, that is a great idea Terri! Hugs! Katherine

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Katherine, Alumni Mentor | @katemn | Jan 28, 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 that is such a good idea .. anything you can do to build up your body will be nothing but wonderful for your body .. lung transplant or not .. it will be nothing but beneficial!! Hugs! Katherine

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tdrell | @tdrell | Jan 28, 2017
In reply to @ehliny "A question for all of you: is there a connection between MAI and GERD? Thanks! (I..." + (show)
@ehliny

A question for all of you: is there a connection between MAI and GERD?
Thanks! (I have both)

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Heathert, your comment re GERD meds stopping stomach acidity therefore MAC bacterium getting into stomach...usually thru drinking water are not destroyed by acidity and therefore if stomach contents ( which contain live MAC) thanks to GERD is aspirated into lungs...they may set up house in the lungs.
The final summary of my workup at NJH contained the instructions to wean off taking Nexium ( so I will go back to having acidic gastric juices) and use tums etc periodically if needed. Terrid

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tdrell | @tdrell | Jan 28, 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....I was at Costco today and ran into the Lynn....the woman I told you about who had the bilateral lung transplant. I told her about you ( no name) asking questions re transplant....she asked me to ask you if you want to talk to her or email privately terriD

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Katherine, Alumni Mentor | @katemn | Jan 28, 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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Terri, that is very thoughtful of you .. I will also message Colleen and see if there is possibly a Forum like our that might be helpful for @windwalker .. Terri .. possibly answer 'pre' questions etc for her. Hugs to both of you!

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Katherine, Alumni Mentor | @katemn | Jan 28, 2017
In reply to @ehliny "A question for all of you: is there a connection between MAI and GERD? Thanks! (I..." + (show)
@ehliny

A question for all of you: is there a connection between MAI and GERD?
Thanks! (I have both)

Jump to this post

@tdrell, Terri and @heathert .. I am confused.

Heathert 'your comment re GERD meds stopping stomach acidity therefore MAC bacterium getting into stomach...usually thru drinking water are not destroyed by acidity and therefore if stomach contents ( which contain live MAC) thanks to GERD is aspirated into lungs...they may set up house in the lungs.'

Terri, are you saying NJH said NO Nexium .. even though they told you you got MAC via silent aspiration .. I found your quote "Denver * 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 plus silent aspiration during day into my lungs." ...SO .. Terri, I don't get it WHY they now want you to STOP the method of dealing with the severe GERD.

Hope I'm not stepping on toes .. just want to understand it better for our pages. Hugs to you both! Katherine

REPLY
tdrell | @tdrell | Jan 28, 2017
In reply to @ehliny "A question for all of you: is there a connection between MAI and GERD? Thanks! (I..." + (show)
@ehliny

A question for all of you: is there a connection between MAI and GERD?
Thanks! (I have both)

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Katherine I was surprised to read Dr Huitt instruction on the summary I was sent 2 weeks after I left NJH. Nothing was said to me while I was there re cutting out Nexium.She wrote that I should phaseout taking Nexium over a 4 to 6 week period unless I had ulceration...and could take Tums and ? If I had heartburn as I did this.
I assume her rationale is to restore acidity in my stomach to kill MAC as I drink water containing MAC. So when I aspirate stomach contents into my lungs...there will be no live MAC.Terrid

REPLY
Katherine, Alumni Mentor | @katemn | Jan 28, 2017
In reply to @ehliny "A question for all of you: is there a connection between MAI and GERD? Thanks! (I..." + (show)
@ehliny

A question for all of you: is there a connection between MAI and GERD?
Thanks! (I have both)

Jump to this post

@tdrell, Terri, you know I am BIG on 'due diligence' .. being your own best advocate .. SO if I was sitting in your shoes I would:
1. sit down .. write out a logical sequence .. your diagnosis .. her summary .. your thoughts etc
2. copy her summary
3. request a clarification/reasoning/purpose .. of "Denver * 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 plus silent aspiration during day into my lungs." AND now you STILL HAVE SEVERE GERDS .. AND they want you off GERDS MEDS????
4. Mail it: PERSONAL ATTN TO: ...

Personally Terri I like things in WRITING .. the doctor has to THINK about what is in writing. THEN give it 2 weeks. If no answer .. you HAVE kept copies of everything. Step 2 .. photo copy EVERYTHING .. label it SECOND REQUEST .. THIRD REQUEST .. UNTIL you get a satisfactory answer!! It is YOUR body!!

I went through thirty months of antibiotic treatment .. ALL THE WHILE on GERD medication. Until/unless you get a GOOD explanation .. DO NOT give up! It is YOUR body! You go girl! Hugs! Katherine

REPLY
tdrell | @tdrell | Jan 29, 2017
In reply to @ehliny "A question for all of you: is there a connection between MAI and GERD? Thanks! (I..." + (show)
@ehliny

A question for all of you: is there a connection between MAI and GERD?
Thanks! (I have both)

Jump to this post

Katherine.....FYI the day after i got Dr HUitt's summary letter and saw the new advice re going off Nexium, I called and made an appt with my GI specialist. My stomach took over a year to get quiet ( and multiple meds and EGDs) 20 plus years ago. So i am in no hurry to affect the status quo. Dr Huitt is an ID specialist not a GI Dr. TerriD

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