(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

@lindam272, REALLY great information Linda! Thank you for taking the time! Truthfully I wish it had been months ago! For whatever illogical reason .. I was brushing my teeth BEFORE my inhalers .. hmmm .. dumb! Literally today as I was thinking it through logically I realized it was wrong! I really like your routine and explanation .( I JUST ordered the Aerobika from Ebay .. with shipping $54. As one of our members said .. when sterilized should be fine .. plus it said it was new. I will let our members know if it works out .. half the cost anywhere else.) I plan to add the Aerobika to my routine .. I liked your explanation that it gets the sputum out of our LOWER lobes!

With your permission I am adding to my File Cabinet for new member:
2. use an Aerobika device . Use a "huff" cough, (like you were cleaning your glasses and fog them with your breath only more forceful), along with the Aerobika, you can pull mucous out of those lower airways.

You are also reminding me to use my Expander to exercise my lungs! Thanks again Linda for a GREAT post! Katherine

@joanney, Joanney, Hello and Welcome to our Forum! We are so glad you found us! FIRST of all I want to apologize for not welcoming you before this. Somehow I missed your post .. I was out of the country when you posted and when I returned I completely missed yours .. so sorry!

So a Big Welcome! What a tough journey you have been on! Wow! So glad you have been reading our posts and have found help and hopefully support. I think you will find our group a big support on our shared journey .. with the exchange of our experiences and information that we have gathered. We are NOT doctors but if you read past pages of our post you will learn a LOT about MAC and Bronchiectasis .. unfortunately sometimes more than many doctors are aware of. As you educate yourself .. you WILL become your own best advocate!

RECOMMENDED READ ARTICLE
I would especially recommend an article I just happened upon .. REALLY interesting .. lots of data that I WISH I'd had available when I was first diagnosed. It was meant for doctors .. so is VERY detailed so don't let it scare you off .. but if I was you I would print it off and keep it handy as a reference as you are dealing with your situation. I have put the link below:
GOOD INFO http://nordphysicianguides.org/wp-content/uploads/2015/10/NORD_Physician%E2%80%99s-Guide-to-NTM.pdf

Joanney, a question I would have for you .. with your two statements "MAC for about 5 years now, but still have not been on antibiotics." and " my sputums have been positive for maic" .. are the doctors telling you WHY they are NOT treating the MAC? Is it because " My chest xrays have been unchanged for about 2 yrs now, will have a CT later this year,"? That would be a GOOD reason. IF the mycobacterium is NOT colonizing/growing .. there would be no reason for you to go on the antibiotic treatment .. it would mean that you are "stable" .. as I have been since May 2014. The mycobacterium IS in the lungs .. just not colonizing. I myself get checked at various periods of time depending on how my Mayo Clinic doctor thinks I am doing .. but the KEY is to be checked with Xrays/Ct scans and sputum cultures to make sure you are still "stable".

With all your other health issues it would be just GREAT if you are able to continue with your wonderful attitude toward maintaining your health and NOT needing the antibiotics! You just keep up that ZEST FOR LIFE!! Joanney, keep coming back to our Forum .. we are here for you every step of the way .. plus we enjoy your great attitude toward life! Hugs to you there in Sister country Canada! Katherine

You are so welcome. You absolutely can share anything you want that I post. It's my prayer that my experience can help someone else. Thank you for all that you do!! Linda

Hi @pamelasc1, we are upgrading the platform to allow you to fine tune the settings like that.
To get messages related to MAC in your daily digest, please Follow the MAC group. Here's how:
1. Go to the MAC group here https://connect.mayoclinic.org/group/mac-bronchiectasis/
2. Click FOLLOW + in the right hand corner below the description of the group.

That's it.

Katherine, Bless you for finding this article about the impending new vaccine for shingles. I will be interested in the research.....what makes this " better" than the current one.....fewer getting shingles or immunity lasting longer?? The main focus seemed to be on future finanancial gains for the manufactering company....we shall see. Terrid

Thanks Colleen, Mayo Connect is constantly trying to upgrade and do their best for our members .. that is great! Katherine

@tdrell Terri, more interesting info on shingles:
https://www.bloomberg.com/news/articles/2016-10-24/glaxo-seeks-approval-in-u-s-for-experimental-shingles-vaccine
* A study published last month in the New England Journal of Medicine found that Glaxo’s vaccine remained effective for at least four years, unlike Merck’s Zostavax, which loses efficacy over time.
* Zostavax Efficacy Zostavax is approved for use in the U.S. in people aged 50 and over, based on a large study that found the vaccine reduced the risk of shingles by about 70 percent. In people over 60, the vaccine’s efficacy wanes within five years of vaccination, according to the U.S. Centers for Disease Control and Prevention.
Zostavax Efficacy Zostavax is approved for use in the U.S. in people aged 50 and over, based on a large study that found the vaccine reduced the risk of shingles by about 70 percent. In people over 60, the vaccine’s efficacy wanes within five years of vaccination, according to the U.S. Centers for Disease Control and Prevention.
ALSO TESTING ONE CALLED SHINGRIX: Because Shingrix is made of a protein from the surface of the varicella zoster virus, and not a live version of the virus, Glaxo is testing it in patients with blood cancers, HIV and transplant patients, to find out whether it can protect people with compromised immune systems against shingles. Generally live vaccines like Merck’s Zostavax are not used in immune-compromised patients.
Hugs! Katherine

Katherine...thanks for all your research on shingles vaccines! so it wanes after 5 yeats.....i had had the shot 9 years before I had a shingles outbreak!! Terrid

Katherine, so happy you got the Aerobika. It is really helpful getting the "gunk" out without too much work. I am also going to order another " toy" called the RC Coronet. I watch cystic fibrosis videos on you tube and one young man has one that explains the correct way to use the acupello, Aerobika and his favorite " clearer" is this RC Coronet. The video is called What is the best airway clearance method for cystic fibrosis and it is presented by Larry Brian. He has a number of educational videos. I realize we fortunately do not have cystic fibrosis, but I often feel that bronchiectasis is " mini" cystic fibrosis. Have a great day all. Mary jo

I have had this disease for several years now. I thought I was cured last July 2016. However, Thanksgiving of 2016 until now I have been ill again. I am going to see Dr "A" or Dr Preethi Ananthakrishnan at Norton Medical Plaza - Brownsboro this Wednesday as a new patient because I have been referred due to my doctors transferring me because of concerns as to what drugs to put me on and being unsure themselves. It sure is a scary disease...Has anyone out there went to Norton Medical in Louisville KY and if so please share your review. I truly appreciate your sharing with me.