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MAC advise
Hello everyone
Its been while since I wrote to you all. I wanted to get some thoughts on your experiences after taking the meds and how you did.
I have been taking the 3 meds for MAC now for 9 months and my sputum is still positive. I have no major side effects but I feel exhausted all the time and not well.
My ethambutol was increased last month. I just feel like the meds are not working. I thought since they said I was mild to medium infection that it would clear it up. I guess I wasn’t as mild as they thought. My lung ct are not cleared either.
I do albuteral, saline 7% on my nebulizer and a flutter valve . I really do not see much help getting my sputum up.
My infectious disease doctor wants to send me back to Duke for another opinion. Don’t know about that. I was thinking maybe getting her to get me an appointment at Jewish health hospital for an opinion.
Would like to hear your thoughts. I am at a crossroads and need help.
Thank you all
Miriam
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Hi. I’ve taken the Big 3 for more than a year with no side effects. I just make certain that I have a small meal when I take the daily meds. twice a day. I’ve read accounts of individuals experiencing some symptoms but fortunately, I’ve had none. I think everyone is different so it’s an individual thing. Good luck and try not to worry. It’s quite a lot of meds, especially if, like me, I’ve rarely taken medication in the past, but hopefully it’ll work well for you too.
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2 ReactionsThank you! Your post was very welcome and I will start out with a positive attitude!
Most of us do disinfect the nebulizer used for saline and meds, but may have different methods. To start, be sure you have the reusable nebs.
Most start with cleaning in hot soapy water. Some boil for 10 min after every use, some boil daily and some boil weekly since it takes a bit for a biofilm to develop.
I used to boil, but I now use a Bololo baby sterilizer, mostly daily. It's easy and provides clean storage, too.
Hi, my doctor had me take azithromycin every other day after a full dinner meal and I took the rifampin on an empty stomach before lunch the next day and then ethambutol after dinner also on that day. That schedule seemed to be most tolerable with regard to controlling GI issues. Also, I found that if I did not have vegetables in my dinner meal the day I was taking azithromycin, that helped too. I would just eat them at lunch in a salad for example. I took a VSL3 probiotic every day in the late evening before bed. VSL3 is cold packed because it contains live bacteria and you keep it in the refrigerator. I found that was the best probiotic for me. Good luck with your treatment!
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1 ReactionThank you so much. I am finding all of these messages very helpful. I am going to start Azithromycin tomorrow and then a couple of days later start adding either Rifampin or Ethambutol per my doctor’s instructions. In a few days I will be on all three and my probiotic (VSK3) should be delivered.
All the best to you and thanks again.
Kris
I highly recommend NJH. I went for 2 weeks in May of this year, and it was one of the wisest decisions I have ever made. I was there for 2 weeks. I was diagnosed with BE and macrolide resistant MABs. I stayed at an Airbnb 2 blocks from NJH, which was very nice. I have a local ID doctor and pulmonologist who both told me they are the best. They totally changed my antibiotic dosing and looked at MABs count and how my metabolism processes one of my antibiotics-this was in the first week. I had not one doctor looking at my CT but a team. I was told that I had a cavity, which after close scrutiny by NJH-I did not have a cavity. During the 2nd week, it was decided that I go off all antibiotics (at the same time) and initiate "watchful wait". I send monthly sputum samples to NJH. My ID doctor there consults with my local ID doctor.