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(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.

Profile picture for cila
cila | @cila | Oct 19, 2017
In reply to @heathert "Hi all good news re : Nitric Oxide Treatment, I got a reply from my email..." + (show)
Profile picture for heathert @heathert

Hi all good news re : Nitric Oxide Treatment, I got a reply from my email to them, here it is:

Thanks for your email. AIT is moving as quickly as possible to provide our nitric oxide treatment for NTM patients. At this time we are conducting a phase 2 trial in Israel. We hope to begin a phase 3 trial in the United States in 2018 that will lead to US FDA approval. We have a lot of work to do and all of the employees are dedicated to succeed. I will add you to our email list so that you will be up to date on our progress.

I will forward any updates I get onto this site. So amazing that they are able to work so fast with such a promising treatment.
Heather 🙂

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Hello Terr M, yes I'm dong the saline and the Aerobika. I do 2x a day salne and 3x a day Aerobika. Dr. Huitt took me off the 4 antibiotic second day I was there. My sputum culture will not be ready until 6 to 8 weeks she said. It seems I feel much better since I stop the big 4. I hope I don't have to take them again. How many times you do the saline? Do you have Bronchectasis? About Aerobika do you use it? I also have bad acid reflux and she wants me to learned to control the aspiration into my lungs. Terri, don't get tred of my many questons pls. Thank you so much! Cila

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Profile picture for Sophie
Sophie | @sophie1019 | Oct 19, 2017

Does anyone use a PIC line to get their meds???

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5 replies
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nick52 | @nick52 | Oct 19, 2017
In reply to @heathert "Hi all good news re : Nitric Oxide Treatment, I got a reply from my email..." + (show)
Profile picture for heathert @heathert

Hi all good news re : Nitric Oxide Treatment, I got a reply from my email to them, here it is:

Thanks for your email. AIT is moving as quickly as possible to provide our nitric oxide treatment for NTM patients. At this time we are conducting a phase 2 trial in Israel. We hope to begin a phase 3 trial in the United States in 2018 that will lead to US FDA approval. We have a lot of work to do and all of the employees are dedicated to succeed. I will add you to our email list so that you will be up to date on our progress.

I will forward any updates I get onto this site. So amazing that they are able to work so fast with such a promising treatment.
Heather 🙂

Jump to this post

To all of you?

Video deglutition today reveals I am doing aspiration whwn I drink.  Does everyone do aspiration into your lungs????  Is this part of the bronchetasis ?

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suenfl | @suenfl | Oct 19, 2017
In reply to @windwalker "@suenfl Hello Sue. There is a good medical school in Gainsville at University of Florida. I..." + (show)
Profile picture for Terri Martin, Volunteer Mentor @windwalker

@suenfl Hello Sue. There is a good medical school in Gainsville at University of Florida. I have read many positive things about them. That location is a bit north of you. Dr. Fennelly is there, and is very knowledgeable with treating MAC patients. Of course, even further north in Jacksonville is our renown Mayo Clinic; that is where I go, and find that it is worth the drive. My doctor is Dr. Leventhal, (I adore that man!) I would be interested in knowing where you end up going. Good luck with your move, -Terri.

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Thank you. I am moving to Tampa because I can't live alone right now. Will be checking things out

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nick52 | @nick52 | Oct 19, 2017
In reply to @windwalker "@suenfl Hello Sue. There is a good medical school in Gainsville at University of Florida. I..." + (show)
Profile picture for Terri Martin, Volunteer Mentor @windwalker

@suenfl Hello Sue. There is a good medical school in Gainsville at University of Florida. I have read many positive things about them. That location is a bit north of you. Dr. Fennelly is there, and is very knowledgeable with treating MAC patients. Of course, even further north in Jacksonville is our renown Mayo Clinic; that is where I go, and find that it is worth the drive. My doctor is Dr. Leventhal, (I adore that man!) I would be interested in knowing where you end up going. Good luck with your move, -Terri.

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Hey suenfl,

We spend 5 1/2 months in Largo. We have a home there.  That is close!

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Profile picture for Jo Ann K
Jo Ann K | @jkiemen | Oct 20, 2017
In reply to @sophie1019 "Does anyone use a PIC line to get their meds???" + (show)
Profile picture for Sophie @sophie1019

Does anyone use a PIC line to get their meds???

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Are you getting IV meds?  PICC Line would be for long term IV meds.  What Meds are they going to use? Were you already on the 3 antibiotic regimen?

Jo Ann K
 
 

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nick52 | @nick52 | Oct 20, 2017
In reply to @sophie1019 "Does anyone use a PIC line to get their meds???" + (show)
Profile picture for Sophie @sophie1019

Does anyone use a PIC line to get their meds???

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Hi Jo Ann

I don’t know if you are talking to me but I don’t  take any meds at all.

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Profile picture for Jo Ann K
Jo Ann K | @jkiemen | Oct 20, 2017
In reply to @sophie1019 "Does anyone use a PIC line to get their meds???" + (show)
Profile picture for Sophie @sophie1019

Does anyone use a PIC line to get their meds???

Jump to this post

Sorry that was for Sophie.  I currently am not on meds yet and hope it can stay that way.

Jo Ann K
 

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Profile picture for jazzmindavis
jazzmindavis | @jazzmindavis | Oct 20, 2017

OMG I was just diagnosed in July of this year. I was terrified. I have started my antibiotics 2 weeks ago. My question to you is...when you started your antibiotics did you have any chest discomfort in the first few weeks? I've been told I have a hole in my right lung and I find I'm having discomfort from time to time...regards
Jazzmin

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14 replies
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Jo Ann K | @jkiemen | Oct 20, 2017
In reply to @jazzmindavis "OMG I was just diagnosed in July of this year. I was terrified. I have started..." + (show)
Profile picture for jazzmindavis @jazzmindavis

OMG I was just diagnosed in July of this year. I was terrified. I have started my antibiotics 2 weeks ago. My question to you is...when you started your antibiotics did you have any chest discomfort in the first few weeks? I've been told I have a hole in my right lung and I find I'm having discomfort from time to time...regards
Jazzmin

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I get pain off and on since I had the pneumonia when it was first diagnosed 2.5 years ago.  I have mentioned it at my appts by it never seems to be addressed. I guess if the CT or CXR is OK they aren&apos;t concerned.

Jo Ann K
 
 

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