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Hi, my pulmonologist sent me to an infectious disease Dr and he is great. You really need both. Mine was first suspected from a CT scan and them confirmed with sputim cultures. I was possitive for 4 different ones. Have been on the big 3, 3 times a week since August 2022. My last cultures were negative and so far the present ones look like they may be also. If so, I can get off the meds in a year. However, last week I failed my second field vision test so they had to take me off ethambutol as it could be causing my eye problems that could lead to glaucoma. This is rare so don't think you will be headed for this diagnosis. Everyone is different. Good Luck!
Replies to "Hi, my pulmonologist sent me to an infectious disease Dr and he is great. You really..."
Agree. I have both types of doctors as well. I'm so happy for you that you're negative! I pray you continue on your way without the ethambutol. That is one of the many side effects that has concerned me. My ID did tell me it's rare, but I'll keep a close "eye" on it 🙂 I just really want to be able to keep working. I'm a 57 year old nurse in a busy unit, which is hard enough without being sick. I hope to feel like doing more of the things I miss doing as well. I get my first immunoglobulin G infusion tonight, so my mind is very busy today. God bless you on your way to healing!
I'm so sorry to hear about your eyesight! That's just terrible. I have had great eyes at all my life, when I turn 50 I just start wearing reading glasses, but otherwise I see pretty darn good so I'm hoping that I don't get any vision or hearing problems. I need to see both, I just got done with surgery though so I haven't even made an appointment yet. I probably will this week so I can get in and get the baselines done.
I started on the azithromycin and the Ethambutol and then he wants to put me on an inhaler. How long did it take before you start having eye problems that you realized? Again I'm really sorry about that. I hope all your cultures stay negative! Thank you for the helpful info
Angela
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Hello,
I am brand new to the site and thankful to have stumbled on it. I have had so many symptoms but wasn’t diagnosed for over 2 years after several misdiagnoses and several lymphnode biopsies. I have had diffuse lymphadenopathy since this all began. I’m scheduled to see my pulmonologist on the 24th of March to go over treatment and start. (does anyone else live in MAC breeding ground, Florida?)
My immediate question pertains to your comment of needing both a pulmonologist and infectious doctor. When my pulmonologist told me about MAC, i made a followup with the infectious disease doctor, thinking that was another layer in treatment that could be helpful. I mentioned it to the pulmonary and she told me, rather abruptly, I need to cancel that, that i don’t need to follow up with them. I found that very strange and Inintend to keep the appointment. Can you please tell me how your doctors work in tandem on your MAC? I’m thinking mine P. doctor is not going to want this joint care route-even tho both doctors are practicing at a university hospital. I have to say I don’t feel complete trust in my pulmonologist, having missed my diagnosis for so long and my MAC was actually found by my rheumatologist. I’ve been to 5 different departments with my “mystery” illness.
Thank you! I’m thankful to be a part of this community and look forward to exchanging thoughts.