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MAC: Anyone ever felt pain from MAC? So many questions
MAC & Bronchiectasis | Last Active: Mar 17 9:32pm | Replies (85)Comment receiving replies
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
Replies to "Jennifer it is good that you have support within your family. Don’t stress too much about..."
Thank you so much I will look into an infectious disease doctor I really do know of anything I guess I can ask around and thanks for that positive feedback you write I need that you have no idea . I tell you what I do have on my mind is already we have this MAC lung issue what if we come down with a cold one day and like I had last year it was bad it turned into pneumonia and that’s before they knew what I had in my lungs I wonder if even in Arikayce they could possibly treat my bad cold with antibiotics if needed? I am a Catholic I go to mass often , I also work in the schools many different ones for years older and new. I’m going to call my dr today to see if I can get an inhaler to open up the lungs not sure if he will give and how often to use I guess I find out as I go along thanks so much for helping me out I appreciate it a lot 😃
I ran a lot of this info along with my husband and he is concerned however he asked why did I need the infectious disease dr as well is that fit more medication?
Hi Irene, I am new to the forum. Your words were very encouraging. Have not taken the big three yet; just using the Nebulizer, walking and exercising and taking Turmeric. Really fear taking such strong antibiotics because of side effects. Since MAC is caused by environmental conditions, I live in the South and believe I got MAC from blowing leaves and debris off my driveway with a blower without using a Mask(before Covid). I sure do now.
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@jr2366 and @irene5 . Beautiful advice, Irene. The only thing I would add is to get copies of all reports and scans (on disc) for your own files and then go to see an expert for a second opinion. Many local pulmonologists know very little or just basics about MAC (including my own). Take the time to go to Mayo or National Jewish. It is so important to get started in the right direction with advice from a Dr that you trust. Go to the Best! By the way, you have stumbled upon perhaps the best support group a person could dream of. Kate