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.

sounder27 | @sounder27 | Apr 24, 2019
In reply to @windwalker "@tdrell and @jkiemen, If you Google Nitrous Oxide/mycobacterium/NIH.gov you can find info on this subject. I..." + (show)
@windwalker

@tdrell and @jkiemen, If you Google Nitrous Oxide/mycobacterium/NIH.gov you can find info on this subject. I posted the link awhile ago, but will have to look for it again. NIH (National Institute of Health) did studies many years ago on treating mac with nitrous oxide. The study proved it does kill off mac, but the delivery system was not cost effective to use it at that time. One would have to spend four hours a day in a medical facility to receive the treatment. I forgot for how many days one would need to do that. Bottom line was, there was no money to be made. It will be interesting to see how an inhaled version of this will go. For as bad as our disease is, it sure is interesting to me to research it.

Jump to this post

To windwalker. Have you heard anything about cellular therapy at the Lung Health Institute. This is a blood draw and infusion of the blood back at large doses. Claims to treat bronchiectasis and greatly reduce inflammation.

REPLY
2 replies
america | @america | Apr 24, 2019

Hi! I’m not sure if this is the same therapy but I did something called oxygen therapy at Life Works! It’s a place for natural healing. It was infusion like getting an IV. It was for Mac and inflammation and many people did it for Different diseases.

REPLY
1 reply
pfists | @pfists | Apr 24, 2019
In reply to @america "Hi! I’m not sure if this is the same therapy but I did something called oxygen..." + (show)
@america

Hi! I’m not sure if this is the same therapy but I did something called oxygen therapy at Life Works! It’s a place for natural healing. It was infusion like getting an IV. It was for Mac and inflammation and many people did it for Different diseases.

Jump to this post

@america
Did this oxygen therapy help you?
Sharu

REPLY
1 reply
boomerexpert | @boomerexpert | Apr 24, 2019
In reply to @sounder27 "To windwalker. Have you heard anything about cellular therapy at the Lung Health Institute. This is..." + (show)
@sounder27

To windwalker. Have you heard anything about cellular therapy at the Lung Health Institute. This is a blood draw and infusion of the blood back at large doses. Claims to treat bronchiectasis and greatly reduce inflammation.

Jump to this post

@sounder27 Other Terri here...this is stem cell "therapy" - completely unproven, unresearched, works seldom, is not covered by insurance (as it's not effective) and very costly

REPLY
america | @america | Apr 24, 2019
In reply to @pfists "@america Did this oxygen therapy help you? Sharu" + (show)
@pfists

@america
Did this oxygen therapy help you?
Sharu

Jump to this post

I did this 2 years ago and I also did the vitamin cocktails! I have a lot of energy with them both or maybe just the vitamins but I was tested last year and I was positive for Mac. I spent a whole lot of money on it and also for my daughter. I don’t believe I’ll do it again.

REPLY
lindam272 | @lindam272 | Apr 24, 2019
In reply to @sounder27 "To windwalker. Have you heard anything about cellular therapy at the Lung Health Institute. This is..." + (show)
@sounder27

To windwalker. Have you heard anything about cellular therapy at the Lung Health Institute. This is a blood draw and infusion of the blood back at large doses. Claims to treat bronchiectasis and greatly reduce inflammation.

Jump to this post

@sounder27 I looked into the stem cell therapy at the Lung Institute a few years ago. I talked to my Cystic Fibrosis doc about it and he asked me questions that I wouldn't know to ask. I asked them of the rep I spoke with at the Institute and here is what I found out: The trial that they did was very small so results are inconclusive. The white paper they have has never been published. My doc says that because they are injecting the blood into your arm instead of directly to the lungs, you can't be certain how much of it gets to the lung tissue. In other words, a very expensive procedure with little chance of success. I have bronchiectasis, MAC and CF. Linda

REPLY
2 replies
sounder27 | @sounder27 | Apr 24, 2019
In reply to @lindam272 "@sounder27 I looked into the stem cell therapy at the Lung Institute a few years ago...." + (show)
@lindam272

@sounder27 I looked into the stem cell therapy at the Lung Institute a few years ago. I talked to my Cystic Fibrosis doc about it and he asked me questions that I wouldn't know to ask. I asked them of the rep I spoke with at the Institute and here is what I found out: The trial that they did was very small so results are inconclusive. The white paper they have has never been published. My doc says that because they are injecting the blood into your arm instead of directly to the lungs, you can't be certain how much of it gets to the lung tissue. In other words, a very expensive procedure with little chance of success. I have bronchiectasis, MAC and CF. Linda

Jump to this post

Lindam272 Thank you for your response. I appreciate the info

REPLY
jasmine321 | @jasmine321 | Apr 24, 2019
In reply to @angiejohnson "@jasmine321 I don’t know if this is my second, or if the first never really went..." + (show)
@angiejohnson

@jasmine321 I don’t know if this is my second, or if the first never really went away. I was diagnosed, treated for 2.5 years, then “clear” for 6 yrs. My right middle lobe was filled with infection and bronchiectasis. I was scared also. They usually have the chest tube in for a day after surgery. It’s uncomfortable- probably worse than the incisions, but tolerable with pain meds and muscle relaxers. I should have gone home after 2 nights. Unfortunately when the PA pulled my chest tube, air leaked under my skin and I got subcutaneous emphasema, or crepitus. They had to put a chest tube back in to suction out the air. That caused me to be hospitalized 3 extra nights. I just had to stay positive and keep telling myself this will be over soon. You can do this!

Jump to this post

@angiejohnson Thank you for the reply. I started the big 3 (daily) in March and today I started the Arikayce inhalation. I will keep you all informed if there will be side effects and if there will be medication adjustments.

REPLY
anniepie | @anniepie | Apr 24, 2019
In reply to @jkiemen "To All. Check out this site for a developing Dry Powder Nitric Oxide from Vast Pharmaceuticals...." + (show)
@jkiemen

To All. Check out this site for a developing Dry Powder Nitric Oxide from Vast Pharmaceuticals. https://www.oindpnews.com/2018/05/dry-powder-nitric-oxide-release-formulation-reduces-bacterial-load-of-ntm-by-99-in-preclinical-study/

Jump to this post

@jkiemen Thanks SO much Jo Ann! This looks really interesting -- it could be a good option, either as an alternative treatment or an adjunct to other drugs for difficult NTM bugs. And I hope it might also potentially be a good intermittent treatment or preventer in the future. Hugs and all the best, Annie

REPLY
spencersok | @spencersok | Apr 25, 2019
In reply to @windwalker "@tdrell and @jkiemen, If you Google Nitrous Oxide/mycobacterium/NIH.gov you can find info on this subject. I..." + (show)
@windwalker

@tdrell and @jkiemen, If you Google Nitrous Oxide/mycobacterium/NIH.gov you can find info on this subject. I posted the link awhile ago, but will have to look for it again. NIH (National Institute of Health) did studies many years ago on treating mac with nitrous oxide. The study proved it does kill off mac, but the delivery system was not cost effective to use it at that time. One would have to spend four hours a day in a medical facility to receive the treatment. I forgot for how many days one would need to do that. Bottom line was, there was no money to be made. It will be interesting to see how an inhaled version of this will go. For as bad as our disease is, it sure is interesting to me to research it.

Jump to this post

@tdrell I just sent a note to Dr. Mark Shoenfisch, University of North Carlonia, Chapel Hill, concerning this procedure. I hoping to hear from him as courteous. He is also the Chief Scientist for a company named VAST Pharm according to LINKEDIN...

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