I need help with tolerating MAC antibiotics please

My pulmonary doctor claims the success rate is very low and would not advise it for me, should I ever contract MAC.

Hello; thank you all for all these messages. My mom has begun her treatment and to say her initial infectious disease specialist was helping her would be a lie. We have switched doctors and did it quickly. They gave the status quo take all 3 at 9 am daily and she has been leveled by the nausea side effects. So thank you for all the ideas on how to take. Chris

I have a number of rare conditions that will make it challenging to treat my very recently diagnosed MAC. I have a rare condition called esophageal dysmotility. As a result I can eat very little at a time because it takes a very long time for contents in my esophagus to empty into my stomach. Because of this, in the past, antibiotics have ulcerated my esophagus. Has anyone used an IV port for delivery of their antibiotics?

@debpankey Has your pulmonologist suggested consulting with an infectious disease doctor to work out a suitable treatment plan? These specialists excel in finding solutions to complex problems.

Yes he referred me to an Infectious to disease doctor, but I can’t see them until September 1. In the interim my coughing is getting much worse and I’m producing yellow phlegm which historically has progressed to pneumonia. I have had recurring pneumonia over the past 3 years with 3 spells this year alone. July 8th I changed to my fourth pulmonologist in the last three years. He is the only one that has been able to make any progress and did a bronchoscopy July 20th. Last Friday, I received the results from the cultures that it is Mack lung disease.My pulmonology doctor has not given me any direction on how to clear my lungs. He also has told me to stay on my steroid nebulizers. This seems counterintuitive to me as those suppress my immune system. I am already immune compromised and currently taking immunoglobin IV treatments every four weeks. I also have esophageal dysmotility, which makes it very difficult for me to take oral antibiotics. Anything I eat or medication I take can stay in my esophagus anywhere from four hours to several days beforethe contents empty into my stomach. In the past I’ve ulcerated my esophagus into my trachea. How often do you see IV antibiotic treatment? Would you discontinue the steroid nebulizers they have had me on for the last 3 years? Any opinions you could give me would be greatly appreciated.

@nygirl4159 You must not be very ill, so I'm happy for you. I was to the point (after having MAC for several years) where my options were either the MAC drug protocol or hospice. Because the MAC infection had decimated my immune system, I couldn't fight off the opportunistic bacteria. Quality of life has been very poor. I know there is no guarantee or even likelihood that the MAC will be eradicated, but I'm just hoping it is beat back to the point I will feel like living.

@blm1007blm1007
I just saw Dr. Zha recently and noticed the same avoid dairy comment when taking azithromycin in her AVS. My husband figured out that it has to do with calcium so now we are looking at low calcium non-dairy milks as a substitute. Tried some this morning with my coffee and can't say I am in love with it.
Will definitely bring this up when meeting with her NP next month as I also take calcium supplements. If it is in fact about calcium why not say restrict calcium (in dairy products etc)
Mary

@sayaboleh My understanding is that you shouldn't take the calcium close to the time that you have taken the antibiotics. I would imagine that means give it a good few hours in between???? However that again can be another professionals opinion. I am not on antibiotics but have read this about calcium when thinking about starting the antibiotics.
I would think it means avoiding diary and calcium supplements.????

If you have a visit with Dr. Zha are you going to clarify all?? She is highly thought of and I and probably others would like to know her entire thoughts if you do ask.

Hard to change over to new tastes but in time they sometimes aren't so bad...hope the flavor with coffee some how changes to "surprising I now love it". Ha.
Barbara

@blm1007blm1007
My next appointment is not till next March but she does respond to MyChart and has called me once. I was planning to bring it up with Nick when I see her next month but if I start the Azithromycin before then I will definitely bring it up with the pharmacist.
Yes, I can see from the many posts mentioning Dr Zha that she is highly thought of, and having interacted with her several times, I can't agree more. I had a very difficult time with the pulmonology group about 10 years ago before she joined them and eventually found someone else at Stanford. When she told me that she was starting a BE clinic, it seemed to make more sense to see her instead when I tested positive for kansasii.
Will definitely share her responses on this if I have the opportunity to speak to her. It doesnt seem like a question for Mychart.
Mary