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Posts (3093)

24 minutes ago · Disinfecting nebulizer in MAC & Bronchiectasis

Chatty2, I buy my neb cup w/tube from a local medical pharmacy. They run me $3.00 a piece. My insurance doesn't pay for it, so I do.

28 minutes ago · Starting Arikayce - nervous in MAC & Bronchiectasis

@rits Hello. I hope they can get your immune system straight. Please keep us posted. Also, I like to keep track of what mac patients did or do for a living. Did you have a career? The reason I ask is for my own research. I am seeing a correlation between career choices and mac patients. Another helpful tidbit is whether you have traveled outside of the U.S. previously of your mac diagnosis. Thank you!

1 day ago · Disinfecting nebulizer in MAC & Bronchiectasis

I use cleaning strenth vinegar. It is stronger than reg vinegar. At the 2016 World NTM confetence in DC, it was stated that some mac strains are resistant to chlorine bleach. That is why so many swimming pools have mac in them. I would think alcohol would be good also.

2 days ago · Starting Arikayce - nervous in MAC & Bronchiectasis

Mac and pseudomonas oftentimes will come back. Meds may make the mac go away, but not the reason we get it in the first place. More and more drs are starting to realize that us mac patients need to be on maintenance antibiotics for life.

3 days ago · Starting Arikayce - nervous in MAC & Bronchiectasis

@sounder27, Don't give up trying to get insurance to pay for the Aricayce. You can ask your dr to contact the insurance company and explain that you have a rare disease and absolutely need it. My insurance wouldn't cover my tobramycin, but Mayo made it happen. You can also contact the drug manufacturer and tell them you need financial help with it. Many times, they will help out.

3 days ago · I am new to Mayo and have my first appointment on Aug 5th. in MAC & Bronchiectasis

@jammer You may have a consult with your pulmonologist so that he/she can examine you and learn more about what you are experiencing. Tests will then be scheduled, probably for a different day. So, if you are traveling there, you will want to know that and line up accomodations. At the end of your testing day(s), you will meet with your pulmonologist Your dr will have all the results and will go over them with you and then talk about a treatment plan. You will leave with the appropriate medications called in to your pharmacy. I love their system.

3 days ago · MRSA was found in my sputum in MAC & Bronchiectasis

Hi Natalee. I am glad that members who have personally experienced having MRSA have responded to you. I have never had it. That had to be scary getting that news. Jan said she had it and it was easily treatable for her. I hope the same holds true for you. All of us respond differently to these various bugs and the treatments. For example: my pseudomonas was gone in 30 days, but for Jan and a few other people, the battle is on-going. I am glad that you found this group, and I hope that you take the time to read over past posts and also scroll thru the topics on our discussion board. Please keep me posted on your progress in fighting the mrsa. I will be sending healing thoughts your way. Are you nebulizing with 7% saline by any chance?