New to MAC and considering treatments options: What did you do?

I use medline compressor and medline cups. Medicare pays for it. I rent it through Lincare and if I need any parts the Lincare supplies me really fast. I pay 5$ a month

See a pulminologist and gets CT scan. You don't want this to progress further if possible.

See a pulmonologist if you haven't yet.

MAC Lung
Are there others out there with MAC Lung but without symptoms who were able to delay treatment for several years without a problem? I've heard the 3 antibiotics for it are difficult to take, so I'm hoping to avoid that for a while if possible and if dr. agrees. Thanks very much.

Don't let that MAC create cavities. MAC is easier to treat than cavitation.

Welcome to Mayo Connect. If you read a little in our group, you will learn that our MAC journey runs the gamut from full-out antibiotics to just airway clearance.

Delaying treatment can be an option if you "watch and wait" - which means regular testing and imaging as well as daily airway clearance.
You can learn a lot about MAC from this National Jewish Health video:
https://www.youtube.com/watch?v=bcvHKHzi4Q0&t=1388s

There are also a lot of helpful links in this discussion:
https://connect.mayoclinic.org/discussion/resources-for-the-abcs-on-bronchiectasis-and-mac-ntm/

Can you tell us a little about your diagnosis?
Sue

Hi,

I am new to Mac and bronchiectasis. I go to UCLA and they do not do subspecies and load testing. My pulmonologist is no help. Does anyone on the thread know of a lab that does that in California or do I have to go to Colorado? Can I send sputum to Colorado?

Is there anyone on here near Los Angeles/ Westlake Village CA that has a pulmonologist or a respiratory therapist or infectious doctor they like and trust that is helpful? My pulmonologist does not even have the name of a therapist and UCLA does not have respiratory therapist she said, but I had one give me the lung capacity test at UCLA and she said she was a respiratory therapist.

The worst experience I had so far was wasting $366 co pay for UCLA Westwood to do a sputum collection. UCLA charged almost $5,000 for 10 minutes and the nurses doing the test ignored me and were only going to use one nebulizer until I request they use a second one so I could get more of a sample. When I pressed my doctor she said I could go to a hospital closer to me, but I could have tried my self with a nebulizer or with the Aerobika. She did not tell me about that until she said she wants to put me on the big 3.

She is horrible but she has 400 and something 5 star ratings. I think she doesn't like me or I can't figure out why she is so popular.

I am very frustrated and would like to find a new person.

Help,

Cynthia

Did anyone give you info about the Facebook group called Lung Matters? It is incredibly well run and in-depth info. That will blow your mind. There is so much that you can do. So find the Facebook group and join it. It’s a private group and then read all of the instructional material “guides” which for me took several weeks. After that, you will be allowed to ask questions, but not until you have ingested, all of the wisdom of others who have gone before you and most particularly the administrator of the site. Good luck if you can’t find it, let me know.

MAC and high deductible health plans don't go together well. I was 4 1/2 years on a HDHP and recently went on Medicare. A respiratory culture at uchealth cost me $14, at NJH it was $400.
Each year I eventually hit my deductible, so,time in the first month.
Cedars-Sinia and UCLA are ranked higher then NJH in this report ..
https://health.usnews.com/best-hospitals/rankings/pulmonology

Hi dispatchpat,

Thank you for your prompt answer. I did find the Facebook group and I will sign up and do what is required to join.

Best,

Cynthia69