(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!

++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
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

@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

Wow seriously?
We in the US seem to be always behind the eight ball in these sort of things.
Europe is non GMO, non mercury in filling ect.

REPLY

I look forward to the next publications, it sounds like they are getting somewhere, yipeee. I emailed the NitricOxide guy about following their progress, it sounds so promising!

REPLY
@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??

Jump to this post

Thanks Shari, i think I have found it on Indigo 24.95$ 

nick

REPLY
@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??

Jump to this post

@nick52
Check Barnes and Noble website
I think it’s much cheaper and free.
shipping.
Shari

REPLY
@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

Windwalker,

I have check the site Jet.com and saw the warning you are talking about. Ridgecrest Herbals, Inc can answer your concerns.  1-800-242-4649 or 1-801-978-9633.

 I have used it and it worked well for me but as you say it may not be for everyone and whoever considered to take it must do its own research and choice for there health. In Dr Balch there was no warning and he usually write them

but he didn't.  I will call Ridgecrest to find out what this is all about. 

Clear lung help relieves bronchial and lung congestion it also balance mucus level.  I do not use it everyday but if I feel i have to much mucus I was to remove sputum.  Each person have different needs and each person are at different

level with it. 

Have you heard about Colloidal  Silver?  Dr Balch in his book says it is an antiseptic that subdues inflammation and heals.

REPLY

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 🙂

REPLY

@heathert
This is such great news!
I’m going to sign up to their email list also.
Thanks
Shari

Liked by heathert

REPLY
@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

Thanks very much for doing this on our behalf, H!

REPLY
@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??

Jump to this post

Dear Shari,

I am glad to know your doctor do broncoscopy to keep your lung clean. My dr. Does the same here and I was wondering if someone else had the same treatment. I do not like that he needs to give versed and fentanyl to sleep. Does your

Dr put you to sleep or you are awake?

REPLY
@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 , Hi Heather, just curious; what affiliation sent you this e-mail? WHO is doing this research? Thanks!

REPLY
@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 Heather, please disregard that last reply of mine. I did see where you got your info. That sounds very encouraging. I am praying for new, effective treatments to be released in 2018. We cannot afford to wait.

Liked by heathert

REPLY
@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
@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
@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
@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.

Liked by pfists

REPLY
Please login or register to post a reply.