Hi @ruhdesb, welcome to Connect! I moved your message over to this ongoing thread about MAC. I'm glad you reached out because we have a great/very active MAC community here on Connect.

Please meet @katemn @sophie1019 @kaystrand @justjanet @tessie @turtle3656 @jillnalani @Paula_MAC2007 @janovr @pamelasc1 @cathyt and @pamelasc1

Here are some other MAC threads that may be of interest to you:
MAC/MAI: https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/?pg=1
MAC - Get a second opinion! https://connect.mayoclinic.org/discussion/get-a-second-opinion/
How long do side effects of meds last? MAC https://connect.mayoclinic.org/discussion/how-long-do-side-effects-of-meds-last/

Hello Ruh, so sorry this has happened to you .. but you have found a good place! Many of us have had similar journeys .. if I was sitting in your shoes what I would do is not make a decision today about what to do .. I would read through the 2 pages of this forum and then go to the Forum:
https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/?pg=10

.. read also through those pages. See that MANY others have been in your shoes .. have shared your fears .. BUT have bitten the bullet .. gone on the antibiotics .. AND have come out on the other side. Ruh, ONLY you can decide what is best for you .. it is YOUR journey. You get to decide what is best for you. Your only responsibility is to decide after doing your "Due Diligence" of educating yourself to your options. Personally I feel your Doctor was WRONG to tell you the side effects might be worse than the disease. THAT ATTITUDE kept me from going on the meds until I got sicker and got a SECOND quite serious mycobacterium! For one thing .. the side effects taper off for most people .. or DON'T HAPPEN AT ALL! (A quote I had on my bathroom mirror was: Remember .. All medicines may cause side effects, but many people have no, or minor, side effects!)

My story is that I am 73 next month .. was on 4-5 antibiotics for thirty months with very bearable side effects .. have been stable since May 2014. I also have MAC, Bronchiectasis and Reactive Airway Disease. I also am an active traveler .. just got back from France in July .. am departing for Italy end of August .. planning a trip to Eastern Europe in December! And I traveled all the time I was on the meds .. took them with me .. paced myself .. took care of myself. Health took priority.

But as I started out .. only YOU can decide what is best for you. Just educate yourself before you make that decision .. you owe it to yourself. Whatever decision you make .. we are all here for you .. we are all on this journey together. You will find a great group of women trying to help each other through this together! Sending you a hug and Lots of positive energy! Katherine

Hi Ruhdesb,
I don't have a lot to offer in terms of experience because I haven't started treatment yet - I was just diagnosed earlier this year. I'm meeting with a new team August 19th and will find out more about what I need to do. But, in reading everything on this forum - and I've read EVERYTHING! 🙂 It looks like in some cases (please correct me if I'm misspeaking here, Katherine) I think there are times where if it turns out that the side effects turn out to be too much for the patient they can sometimes cut back to three times a week. I don't remember if that increases the length of time of treatment. I guess what I'm trying to say is there are always some options with this. If Plan A doesn't work, go on to Plan B, etc. Of course it's up to you but you have nothing to lose by trying. You're in complete control. And you have so much support here with suggestions on dealing with side effects, and anything else that goes along with dealing with this. Whatever your choice is, we are here for you. Good luck. Janet