(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

Terri – this is Pam in Boston – I posted two emails last week but can not find them on the recent digests – one was asking if anyone has had low oxygen levels on non-stop 6 hour plane flights, the other was asking about how to avoid GERD. Can you find these? Are they there? If not, I will resend. Thanks, Pam

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@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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Very True @windwalker, hopefully the FDA will speed up approval, as there is such a need.

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@pfists

@windwalker888
Hi Terri
I went to the website for the Nitric Oxide study being done and they concluded another small study that was very encouraging for us with NTB. They are now doing one more 10 person study.
One person went 7000 to 500 colonizing NTM
The other person went to 0 colonizing NTM. That was in just three weeks time.
Let all hope and pray that this option becomes available to our community here!

Here is a link
https://globenewswire.com/news-release/2017/09/13/1120291/0/en/AIT-Therapeutics-Adjuvant-Nitric-Oxide-Treatment-Shown-to-be-Safe-and-Effective-in-the-Compassionate-Use-Setting-in-Cystic-Fibrosis-Patients-with-Non-tuberculous-Mycobacteria-NTM-I.html

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Hi all,
I thought I’d bring back the discussion @boomerexpert started a while ago about advocating for research. Please see:

– NTM/MAC/MAI: We must advocate for ourselves https://connect.mayoclinic.org/discussion/we-must-advocate-for-ourselves/

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@pamelasc1

Terri – this is Pam in Boston – I posted two emails last week but can not find them on the recent digests – one was asking if anyone has had low oxygen levels on non-stop 6 hour plane flights, the other was asking about how to avoid GERD. Can you find these? Are they there? If not, I will resend. Thanks, Pam

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Hi @pamelasc1, your posts about GERD are here in this discussion https://connect.mayoclinic.org/discussion/24-hr-ph-test-for-gerd-question-for-those-who-have-had-this-done/?pg=6#comment-74139

Here’s how you can find your message history.
1. Go to your Profile.
Click your avatar in the top right and select My Profile.
On a mobile device, click the menu (☰) symbol and select My Account, then My Profile.
2. Scroll down to “Posts” and there you will see all the messages you posted along with the name of the discussion thread and the group name to which you posted each.

If you’re looking for posts made by another member, simply click their @username to see their profile and history.

Here’s more information and instructions on how to use Connect and get the most out of the site. https://connect.mayoclinic.org/get-started-on-connect/

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@pfists

@windwalker888
Hi Terri
I went to the website for the Nitric Oxide study being done and they concluded another small study that was very encouraging for us with NTB. They are now doing one more 10 person study.
One person went 7000 to 500 colonizing NTM
The other person went to 0 colonizing NTM. That was in just three weeks time.
Let all hope and pray that this option becomes available to our community here!

Here is a link
https://globenewswire.com/news-release/2017/09/13/1120291/0/en/AIT-Therapeutics-Adjuvant-Nitric-Oxide-Treatment-Shown-to-be-Safe-and-Effective-in-the-Compassionate-Use-Setting-in-Cystic-Fibrosis-Patients-with-Non-tuberculous-Mycobacteria-NTM-I.html

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That is perfect. I will certainly start doing more advocation. Maybe I will start with the CDC.

Jo Ann K

 

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@pamelasc1

Terri – this is Pam in Boston – I posted two emails last week but can not find them on the recent digests – one was asking if anyone has had low oxygen levels on non-stop 6 hour plane flights, the other was asking about how to avoid GERD. Can you find these? Are they there? If not, I will resend. Thanks, Pam

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@pamelasc1, Hi Pam, were you able to find your posts? I saw them and responded to them. Call me if you need help.

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@pfists

@windwalker888
Hi Terri
I went to the website for the Nitric Oxide study being done and they concluded another small study that was very encouraging for us with NTB. They are now doing one more 10 person study.
One person went 7000 to 500 colonizing NTM
The other person went to 0 colonizing NTM. That was in just three weeks time.
Let all hope and pray that this option becomes available to our community here!

Here is a link
https://globenewswire.com/news-release/2017/09/13/1120291/0/en/AIT-Therapeutics-Adjuvant-Nitric-Oxide-Treatment-Shown-to-be-Safe-and-Effective-in-the-Compassionate-Use-Setting-in-Cystic-Fibrosis-Patients-with-Non-tuberculous-Mycobacteria-NTM-I.html

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@colleenyoung , Colleen, that is absolutely what we all should be focusing on right now. We have kicked the can around enough about the disease. We all need to DO something about it! How many of you have visited the http://www.NTMinfo.org?

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@pfists

@windwalker888
Hi Terri
I went to the website for the Nitric Oxide study being done and they concluded another small study that was very encouraging for us with NTB. They are now doing one more 10 person study.
One person went 7000 to 500 colonizing NTM
The other person went to 0 colonizing NTM. That was in just three weeks time.
Let all hope and pray that this option becomes available to our community here!

Here is a link
https://globenewswire.com/news-release/2017/09/13/1120291/0/en/AIT-Therapeutics-Adjuvant-Nitric-Oxide-Treatment-Shown-to-be-Safe-and-Effective-in-the-Compassionate-Use-Setting-in-Cystic-Fibrosis-Patients-with-Non-tuberculous-Mycobacteria-NTM-I.html

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Reminder to all: I started this thread last year for the express purpose of organizing advocacy https://connect.mayoclinic.org/discussion/we-must-advocate-for-ourselves/

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@pamelasc1

Terri – this is Pam in Boston – I posted two emails last week but can not find them on the recent digests – one was asking if anyone has had low oxygen levels on non-stop 6 hour plane flights, the other was asking about how to avoid GERD. Can you find these? Are they there? If not, I will resend. Thanks, Pam

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Hi Colleen – many thanks for your help… I did not know how to get into my messages and replies – so thank you, and thank you also for the info on GERD. Pam

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@heathert Wow! That is great news! They are two months ahead of schedule for filing the application. Aradigm was one of the sponsors at the NTM conference in D.C. They said they planned on filing that app in Dec. & were trying to get it released by spring of 2018. Lets hope that early filing will mean an early release. I am impressed, because the speaker said they would try to expedite that.

Liked by heathert

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@auntnanny

pfists Mayo’s called me this morning and have called in cipro for me to pick up tomorrow. Guess we’ll see how that goes. Thanks for the encouragement

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@auntnanny , Hi Jan. Are you feeling any better now? How are things on the ranch?

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@windwalker

@nick52, I looked up each individual ingredient in Clear Lungs, seems that the one ingredient, licorice, can be dangerous to many people with other underlying health issues. If more than three grams a day is used, it can lower potassium levels and cause high blood pressure. People with heart, liver, or kidney disease should not take suppliments with licorice. Also, people with diabetes should avoid it also, along with people who use corticosteroids; which is most patients with COPD. One needs to discuss this licorice ingredient with their doctor before use. Gosh, licorice! Who knew??

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@nick52
Sorry I didn’t see your question until now.
My Doctor does not put me out completely with the borchoscope but really relaxed. I did try to watch the procedure on the screen with a little success.
He mentioned doing 3-4 scopes a year.
Since then I have been feeling real good with way more energy and breathing better. Also ragweed season is over which Im allergic to so not sure how much is the scope or other things. I also noticed on the days the fires were going on and our air quality was bad I couldn’t be out much at all.
How are you doing and did you decide to get the book?
Take care,
Shari

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@auntnanny

pfists Mayo’s called me this morning and have called in cipro for me to pick up tomorrow. Guess we’ll see how that goes. Thanks for the encouragement

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I finished two weeks of cipro as sputum tests showed pseudomonas……. I’m coughing a little but nothing that keeps me from doing what I need to do. I don’t know if it totally got it or maybe just made it better. Too soon to do another sputum test after just finishing the cipro. I understand it will keep working for a week or so????? Don’t know if any of that is right. But, overall….. I’m good. thanks for asking. Jan

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