Had to stop antibiotics (side effects), how you cope with that fact?

I, too, had to stop because of side effects from the azithromycin. That was my second go around with the Big 3 and it didn’t work. I quit in November 2022 and my last CT in August was unchanged. I still use albuterol everyday just to keep my lungs open. I walk, I use a dry salt inhaler (Nevelers on Amazon) and I see my acupuncturist and integrative medical doctor. I have decided that I will enjoy my life without those meds and explore other avenues of health. I also have since discovered (thanks to my integrative doctor) that I have IgG, and IgM deficiency and would have never been healed by the Big 3 until I remedied that. I now see an immunologist. Someone on here wrote that MAC is different for everyone and I also believe that the healing with it is, as well. I wish you all the best! Carolyn

Thanks for your response Carolyn….it’s very helpful to me. Bon

Healthybon, you're seeing Dr. Swenson in Atlanta, right? What has he advised? I'm sorry that you are feeling so poorly, but please keep in mind that the advice you get from people in a chatroom is just that, advice based on their personal experiences. It is not medical expertise - that you get from your doctor, who has access to your history and your test results. Specialists such as Dr. Swenson spend years becoming experts in their field and they will use all that specialized scientific knowledge to find the best treatment for you as an individual.

Is it fair to ask a specialist to spend their time and effort developing a treatment plan for a patient only to have that patient disregard their recommendations or perhaps even stop treatment all together without discussing that option with the doctor? Personally, I don't think so.

My advice (non-medical!) would be to copy your post above into your doctor's portal so that he sees how awful you feel and ask for his advice. Be sure to let him know what supplements and over the counter drugs you are taking in addition to those he has prescribed. In the meantime, I do hope you feel better.

I had to stop the ethambutol because of eye problems but continue on rifampin and azithromycin. Even after over a year on them I still get nausea and sometimes diarrhea. Like someone mentioned, you still don't know if mac will come back when you are done with the meds. Hope you find someone that can help you, stay strong it's not an easy disease to live with.

Hi Laura, thks for your response. You are absolutely right! No guarantees. If I were younger, stronger, no other ailments, I may plow through..but my tiny body and ability to handle the side effects is not there. At 73, no MAC symptoms, I will do all the clearance things etc., send my sputum samples in once a month, and take it that way. It’s a struggle of a decision…….but I have to come to some kind of peace about it. It is eating me up mentally. Thanks for your input. It helps….. Bon

Thank you for your input!

Hi Bon,
I unfortunately have nothing to offer as I’m still within the process of awaiting my first bronchoscopy results. I found out I have intracellulare yesterday in my portal but other than the positive AFB last week that’s all I know as of yet!

I was able to get an appt with Dr Swenson later this month and am curious your opinion and feelings about him at this time?

I am so sorry the meds did not work for you and I, being very small and drug intolerant myself assume that may end up the case for me as well.

I wish you quality days and peace with this decision. You’ve been very brave and I know how distressing all this is. That in itself takes quite a toll.

Dr Swenson is wonderful. He’s very dedicated and informed….and understanding. I have intercellular too. If you ever want to talk, private message me and I will send you my phone number.

I don’t know how to private message and I’m sure I’m missing something so obvious !?!?

Private message me and let’s exchange numbers!

I’m sorry you had such trouble with the meds. Almost 10 years ago, I was diagnosed with MAC. My first doctors put on the standard medication regimen. Honestly I can’t remember all of the meds I took, but I’m pretty sure it’s the same ones that most ppl take. I kept having problems with some of them. (Rash, itching, then problems walking and balance, then upset stomach and lots of UTIs, also being so tired and having either no appetite at all, or being hungry all the time…) I took different ones for nine months. The doctors finally decided they were too toxic and took me off all of them. I then went to MUSC in Charleston, SC where the doctors there did not put me back on anything. Yes, you can get rid of MAC and have it come back. I’ve not had any antibiotics for the MAC, only a couple of times when I had the flu, which is complicated by the MAC. That was not a problem. Good luck on your journey. I have not missed the meds. I don’t think I’ve suffered from not taking them. I do use a nebulizer with saline and Albuterol solution, but that’s about it.