Just got second CT Scan says probably MAC. I am a K teacher

Welcome back - you hit the right spot to continue your discussion.
Let's break this down...
When the bronchoscopy was done, mucus was collected and sent to be cultured. This takes 2-8 weeks to grow & determine which antibiotics your particular infection will respond to, so it will be a while before you have answers.

This confused me tested "positive for C anca a test for vasculitis but my doc said nothing showed up on my blood work" - definitely a question for the rheumatologist, and a whole different topic for consideration if vasculitis is diagnosed. May I ask if you know why this test was done?

As for the MAC infection migrating to your surgical site, if your lung problem is determined to be MAC, your pulmonologist should bring an infectious disease specialist into the discussion. In general, MAC confined to the lungs is not considered a high risk. I had two ortho surgeries on my hands while I had MAC, and the surgeon was not concerned at all that it would affect the site (and it did not.)

I am sorry you are going through this difficult waiting game - it just adds to anxiety, doesn't it? Please let me know what you learn from the rheumatologist.
In the meantime, be kind to yourself.
Sue

My pulmonologist called me last Friday and said that I tested positive for the Anca test. I think the speciman from the Bronchoscopy showed this but not sure, she said it was odd because it didn't show up on any bloodwork.

Anca is for vasculitis and my pulmonologist said I should see a rheumatologist and I have an appt. for Friday to do further tests

I had also had a lung function test at Stanford last week that came back normal. My primary doc has been out for the past two weeks and all I have is her nurse who keeps sadly saying that primary doc was worried because she thought it might be MAC. Here I am, hustling in these covid days to get appt. sooner than later.

I appreciate this site. Thank you!

What a roller coaster ride. Thought I had GPA vasculitis but just found out after retaking the blood test that the initial blood test was a false positive. Currently back to work FT feel 65/70% of self but glad to not be as stressed out about money. Eating super healthy foods, sleeping and trying to exercise everyday.
Can folks with MAC lung have surgery? I have breast implants and my cosmetic surgeon suspects a leak, rheumatologist said there is a lot of association between implants and autoimmune disease. Before all of this I was planning to get them removed this year.

This is, of course, a question for the surgeon, based on your personal condition. That said, I had surgery while I had active MAC in my lungs. The surgeon, in conjunction with my pulmonologist, had me stop the antibiotics for one week prior to surgery and one week after. He said this was necessary because antibiotics were used in the ortho surgery.
Have you asked your doctors'opinions yet?
Sue

I sent her an email. Haven't got results from bronchoscopy.
Wondering a couple of things, do some folks feel better after a month or two of antibiotics? Do folks work FT jobs with Mac Lung. I read an articles about preparing living with MAC Lung and it says that women may not be able to do chores, cook or work their jobs. I am a single mom. I have close friends and family but I pretty much have to take care of my daughter and me. It scares me to see that I may not be able to maintain my job. Right now, it is not super fun teaching wearing an n95 and surgical mask but I can do it. Another thing, how to navigate Mac Lung with Covid. I have a 14 year old daughter who goes to school with other kids and has friends. Daunting and I don't have a diagnosis yet.

@aima1234 I was diagnosed five years ago with MAC and Bronchiectasis and have continued to work full time. I have a retail store that's open seven days a week and I still work six days a week. For me, there wasn't much of a choice. I HAD to work. I think mindset has a lot to do with it. I did cut back on my hours because I had to start exercising everyday (six days a week) and then nebulizing 7% everyday. So all that has taken some time out of a work day but I knew had to start working to keep fit so I could fight this thing back. Nan

Thank you. Good to hear how others pushed through it.

Just heard back from my pulmonologist and I do have mac. She said I have no lung damage. Don't know what that means. I sent her an email asking if I also have bronchiectasis. She referred me to the iD in her building. She is in redwood city CA. I usually go to Stanford but when I was really sick and scared last month I took the first pulmonologist who saw me and she is very on time of it with communication and her actions. I researched her referral and no talk of Mac on website or reviews but did just see a doc referral link on this site and ask my pulmonologist to refer me to David Epstein at Stanford and also to do a referral to NJH. My pulmonologist said she has worked with them with some of her patients. I suspect they will put me on meds and I will take 3 times a week. I am on Tamoxifen so a bit scared how this is all going to work.
Big question to you all. My primary doc said she wouldn't get a covid booster if she were me but pulmonary doc has encouraged me to do so. I teach K in CA and have a 14 year old daughter. I think I should ASAP. Anyone out there had experience with getting a booster and having MAC that is untreated with antibiotics. Sorry to bug you all with this journey but so little info and rather scary all the info on the web when you google MAC. Especially mortality. THANKS!

I'm glad you got a diagnosis and there is no lung damage.
I cannot understand why she recommended against a booster, but would ask her why. Before Covid, while I was being treated for MAC, I was strongly advised to get flu, shingles and pneumonia vaccines, which I did without serious issues.

Has anyone else with MAC been advised to skipthevaccine or
booster?

Sue

I was told to get all COVID booster,flu, pneumonia and shingles. I am a part time nurse in a cancer clinic. I have Mac and bronchiectasis. No antibiotics yet.