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I have been on all three meds for over two years. When I told my optamologist that I had been told one could affect my eye sight he knew which one. I see him next week but I notice a hearing loss more than a vision problem. It appears that due to MAC being rare many pulmonologists have never treated someone with it so aren’t familiar with many side effects. I don’t feel up for a debate into what anyone else thinks. I have lost 28 lbs (125 down to 94.6 today) and the doctor I was referred over to told me today I am going to die if I don’t stop losing weight. He didn’t agree that the dizziness is related to MAC even though everything I read online about each med said ‘severe’ dizziness was a side effect.
Replies to "I have been on all three meds for over two years. When I told my optamologist..."
I hope for your sake that they take you off those antibiotics and find something else to treat you with. I have read some people refuse to take the antibiotics and go on Cipro and another drug I can't remember. I really hope that you can gain some weight back!!
So sorry you have to go through all this, and I wonder if you're having the side effects because of how long you've been on the drugs. I think that can have something to do with it. I'm new to taking them and that's not saying that in 8 months that I'm not going to have side effects to some degree, and I hope I don't but it could happen. I like reading comments because I want to be aware of what to look out for!
I'm really hoping that they figure out something different for you because if you go out to meds you'll probably gain some weight back and having some weight on your bones with Mac it's really important!!! Thanks for your post and I wish you all the best luck!
Angela
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Weight loss is indeed a nasty side effect - mine was exactly like yours.
A few years ago there was a lengthy discussion about many strategies for packing on healthy calories. It began (more or less) here:
https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/?pg=678#comment-65100
Maybe some of the suggestions will help you.
Sue