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.

Mentor
Terri Martin, Volunteer Mentor | @windwalker | Sep 30, 2017
In reply to @pfists "@windwalker888 Hi Terri I went to the website for the Nitric Oxide study being done and..." + (show)
@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

Jump to this post

@pfists, Thank you, Shari. Lets keep our fingers crossed!

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Sep 30, 2017
In reply to @auntnanny "I'm not sure if this is the place to post but..... hopefully some will have answers..." + (show)
@auntnanny

I'm not sure if this is the place to post but..... hopefully some will have answers for me. I have bronchiectasis and went through a "flare" -- took clindamycin as that had been the last antibiotic used but this time, it really didn't seem to work. I contacted Mayo's and my pulmonologist was out. Someone filling in for him sent me Bacterim. I had a sputum test run and the results say pseudomonas. Bacterim is not on the list of recommended antibiotics for this. Does anyone have experience with pseudomonas and is it hard to be rid of it. I'll fax this report to Mayo's Monday morning and see where they want to go with it. Just questioning for others with experience with this bacteria. Thank you.....

Jump to this post

@nick52, yes, I have heard of Colloidal Silver. It used to used a lot back in the day before so many more medications came out. Please do let us know what you learn about that warning, I am curious.

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Sep 30, 2017
In reply to @auntnanny "I'm not sure if this is the place to post but..... hopefully some will have answers..." + (show)
@auntnanny

I'm not sure if this is the place to post but..... hopefully some will have answers for me. I have bronchiectasis and went through a "flare" -- took clindamycin as that had been the last antibiotic used but this time, it really didn't seem to work. I contacted Mayo's and my pulmonologist was out. Someone filling in for him sent me Bacterim. I had a sputum test run and the results say pseudomonas. Bacterim is not on the list of recommended antibiotics for this. Does anyone have experience with pseudomonas and is it hard to be rid of it. I'll fax this report to Mayo's Monday morning and see where they want to go with it. Just questioning for others with experience with this bacteria. Thank you.....

Jump to this post

@nick52, back in the day, over the last several hundred years, Europeans used sterling silver ware and ate off of silver plates and would always drink their water in silver goblets. (those that could afford it) That is because the silver ions would leach from the metal and kill bacteria in the water and food. That is how people kept from getting food & water bourne illnesses. Hmmmm, might have to break out grandma's silver and start using it. Ha!

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Oct 1, 2017
In reply to @heathert "Hi all good news re : Nitric Oxide Treatment, I got a reply from my email..." + (show)
@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

@heathert , it would be nice to know which countries ahead of us gets approval. That way; we can go to that country and get the treatment if our own takes too long to pass it through the FDA.

REPLY
pamelasc | @pamelasc1 | Oct 1, 2017

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

REPLY
3 replies
heathert | @heathert | Oct 1, 2017
In reply to @heathert "Hi all good news re : Nitric Oxide Treatment, I got a reply from my email..." + (show)
@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

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

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 1, 2017
In reply to @pfists "@windwalker888 Hi Terri I went to the website for the Nitric Oxide study being done and..." + (show)
@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

Jump to this post

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/

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 1, 2017
In reply to @pamelasc1 "Terri - this is Pam in Boston - I posted two emails last week but can..." + (show)
@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

Jump to this post

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/

REPLY
Jo Ann K | @jkiemen | Oct 2, 2017
In reply to @pfists "@windwalker888 Hi Terri I went to the website for the Nitric Oxide study being done and..." + (show)
@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

Jump to this post

 

 

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

Jo Ann K

 

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Oct 2, 2017
In reply to @pamelasc1 "Terri - this is Pam in Boston - I posted two emails last week but can..." + (show)
@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

Jump to this post

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

REPLY
View MoreView Less
Please sign in or register to post a reply.