← Return to MAC: Anyone ever felt pain from MAC? So many questions

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@jr2366

Hi Irene I’ve had a lung biopsy I’ve had a bronchoscopy which told me I had Mac/Mai no my dr did not mention the 3 medications only Arikayce I’m covered thankfully for the medicine. I am not sure why he went for the Arikayce on me my dr. My Pulmonologist is the one who put me on this Arikayce. I do have my moments I cry and don’t quite know how I got this that’s what’s frustrating also. I’m wondering if the medicine will work and if I can eventually be medication free for a little while after my 12-18 months I’m also scared that the medication won’t work but as I read the statistics it’s telling me the ratings are very good with fighting this Mac bacteria I’m hopeful I pray often . My husband is very Patient so far however it’s only been about 12 days on Arikayce I hope we both will get through this and we both live long kind of scared I’m not going to lie I need to know people have lived many years with this and I haven’t heard many people so far I’m the type of person. I need lots of positive talk about this Mac or I get very nervous as ling as I hear positive things it calms me down thanks for listening and you can write me back I would appreciate it

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Replies to "Hi Irene I’ve had a lung biopsy I’ve had a bronchoscopy which told me I had..."

Jennifer it is good that you have support within your family. Don’t stress too much about how you got this disease. My family first thought I got it at the dentist’s office because of the aerosolized water. Then we thought it was because of my teaching in old buildings for so many years. The long and short of all of that is it doesn’t really matter where - what matters is getting rid of it before it causes lung damage. There seems to be a body type with nodular MAC, and nodular MAC is slower growing than cavitory MAC. I think Terri our mentor explained that to you. MAC will wax and wane, and it is typically hard to get rid of. However, it is written that most people who have MAC die with MAC not from MAC. In other words you will most likely live a long life and die from something other than MAC. For you to stay positive I suggest you try mindfulness techniques, eat really healthy, and do physical activities as much as possible even if you don’t want to. I don’t know if you are a religious person or not, but the way I look at it, the good God’s got this so whenever I feel down about it I remember that. Each of us has a different journey with this, and I truly feel badly that you are so distraught. This group of intelligent, knowledgeable people will be here virtually to help. I can’t stress enough the importance of having both a pulmonologist and infectious disease doctor who work together for your benefit. Arikayce is really not meant to be used by itself but in conjunction with other meds. Some of us do three days a week and some seven. But these are things you really should talk to your infectious disease doctor about - before March! Wishing you less stress! Irene