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@brigby

Hello Girls, I am new to your forum. I am a 56 year old diagnosed with Bronchiectatasis and MAC avium 2 years ago. I also have NTM abscessus colonization in my sinuses (along with a host of other bad dudes!) I see doctors at Stanford and they have things contained pretty well right now by Gentamicin inhalant 2x daily and budesonide inhalant 2x daily, along with compression vest, postural drainage, and nebulizer w/2% saline. I am still able to work full time, enjoy grandbabies, and most weeks, exercise 5 days a week. But I do suffer with exhaustion, nearly constant headaches, and when I get tired, terrible stabbing muscle pains & chills. Seem to need 10-12 hours of sleep a night. Prayers of friends and family keep me going, but I am concerned about what the future holds. I do wonder sometimes if I should stop working to reduce stress and focus all my efforts toward staying well (?) Also wonder if I should explore National Jewish or Mayo? My lung doctor has explained the "Big 3" antibiotic treatment plan and when we would consider starting. I am also wondering which of my symptoms CBD oil might help? Thanks for listening and any response is appreciated. So grateful for this forum where we can lift one another up and encourage others!

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Replies to "Hello Girls, I am new to your forum. I am a 56 year old diagnosed with..."

@brigby Hi there, and welcome to Connect. Wow! I had not had anybody on this site that had this mac business in their sinuses too. They probably are, but had not had their sinuses tested. I am impressed with Stanford in that they didn't automatically put you on the 'Big 3' and that they have you on the nebulized saline. That tells me that they are on the ball. I love the Mayo Clinic in Jacksonville, Fl. They def turned my life around. BTW, I love your spirit; that will take you a long way with this battle with this disease. I am so glad that you found this site.

Hello. @brigby how did they find the MAC in your sinuses? I have only heard about one other case of it being there. You take care! (Irene)

@brigby absolutely. Always get second and even third opinions and options.

@irene5 LOL I’m even glad to hear of ONE other case of m. abscessus in sinuses! They have cultured it out now twice, at a 4+, at Stanford, though endoscopy.