Hello

@sheila7a I saw both posts, and don't have anything to contribute. I am guessing if you got no reply here, noone has had their doctor stop their antibiotics like yours did.
Have you discussed this with your pulmonologist yet?

No.
Thanks for bringing that up.
I was wondering if I should call him.
My Primary doctor said they would all work together.
Maybe I should call him just to make sure he knows.

Thank you.
I will call him Monday.
Just because they are all in the same clinic doesn't mean they are keeping in touch with each other.
My first Pulmonologist didn't even know that his nurse had referred me to ID doctor.
I have to be more assertive.
When first diagnosed I thought okay, I'll blow in this thing , inhale this medicine and back to normal.
Little did I know what I was in for.
I thought you had to stop the antibiotics because they made you so ill.
I didn't feel side effects maybe a stomach ache for a few minutes.
My feet were starting to feel weird.
Nothing major until blood test.

Thank you.
I will call him Monday.
Just because they are all in the same clinic doesn't mean they are keeping in touch with each other.
My first Pulmonologist didn't even know that his nurse had referred me to ID doctor.
I have to be more assertive.
When first diagnosed I thought okay, I'll blow in this thing , inhale this medicine and back to normal.
Little did I know what I was in for.
I thought you had to stop the antibiotics because they made you so ill.
I didn't feel side effects maybe a stomach ache for a few minutes.
My feet were starting to feel weird.
Nothing major until blood test.

I did stop the antibiotics - after over a year at 3X per week and 6 months daily, when the cumulative effects made me very ill.
But I always made sure my primary knew what was going on, and she was the one who suggested stopping, but only AFTER I consulted with ID and pulmonologist.

We all react so differently to medications, not only the MAC antibiotics, that it takes a team to help us.
I am with a new pharmacy, and the lead pharmacist there told me "If you try a new medication and cannot take it, please let us know why and what side effects you had so we can note in your profile. Then if a doc tries to prescribe something similar, we can see if it's okay for you, and contact them directly if we think you should have something different." How's that for service?

I did stop the antibiotics - after over a year at 3X per week and 6 months daily, when the cumulative effects made me very ill.
But I always made sure my primary knew what was going on, and she was the one who suggested stopping, but only AFTER I consulted with ID and pulmonologist.

We all react so differently to medications, not only the MAC antibiotics, that it takes a team to help us.
I am with a new pharmacy, and the lead pharmacist there told me "If you try a new medication and cannot take it, please let us know why and what side effects you had so we can note in your profile. Then if a doc tries to prescribe something similar, we can see if it's okay for you, and contact them directly if we think you should have something different." How's that for service?

Hi. I started the big three meds in June after recently being diagnosed with MAC and had to stop after three weeks. No appetite, nausea, diarrhea. Met with pulmonologist, infectious disease and my primary who want me to try again after stopping my taking cholesterol and anti reflux med that they say fight the big three. And they lowered the dose of one of the meds (ethambutol) based on my weight. I’m going to try again starting tomorrow, MWF weekly for six months, if I can, and pray it works. Any and all thoughts are appreciated. Thank you.