← Return to Anyone been mistakenly diagnosed with MAC Lung disease but not MAC?

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@rstel7272

Or a surgical lung biopsy

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Hello everyone,

I was recommend to start treatment with azithromycin and ethambutol. One of my Pulmonologist prescribed 1 tablet of zithromycin (500mg )for 5 days a week and start ethambutoL 400 mg tablet to take 2 tablets (800 mg total) by mouth daily, 2 weeks after starting azithromycin.

My Infectious Disease specialist suggests azithromycin either at (250 mg daily or 500 mg ) 3x/week and ethambutol (15 mg/kg/day or 25 mg)/kg 3x/week.

I am very confused and nervous about the right dosage. So I contacted my Pulmonologist at Mayo Clinic. Whom originally when I meet last September did not think I should be taking the medications. He Suggested airway cleansing and sinus rinse with salt water and use a nasal spray.
I only did the sinus rinse with salt water for a few months, I hardly used the nasal spray, I wonder if that would had helped my situation?
I use the nablizer at least 5 times a week. I am pushing myself to do it twice a day/7 days a week as prescribed.

I am planning to start the medication as soon as I hear back from my Mayo Clinic Pulmonologist. I admit I am very nervous . 😟 😰

Do you think I should do a Bronchoscopy first? My last several septum test has been MAC positive. My last lung CT was last July. I have done so many CT scans, nervous to do more!!! ( Total CT scans since 12/22 / 3 times)
Since 2000/ 26 CT scans !!! Any time I go to emergency room they order a CT scan. 😭😭😭
Good news is they have built a new CT scans with much less exposure to radiation.
This is extremely hard not knowing what step I should be taking next, not even knowing what is the right medication dosage???
Has anyone gone through the same experience?
What about taking probiotics while taking the big 3? Did anyone took or is taking probiotics with taking the big 3 ? And if so how often? By the way they do not do big 3 anymore! I guess is the big 2 now... lol

I was also prescribed the airway clearance vest, my co-pay is extremely high, but if it works it is definitely worth it. Please let me know your experience with airway clearance? Does it actually help?

I greatly appreciate all your suggestions and experience on what to do and what to eat while on the medications? I have an appointment with my nutritionist tomorrow morning, so hopefully she would guide me on the right path.:)

This feels like a long Journey. I hope we all get better soon.
Thank you for your support.

Suzanne