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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
Sue thanks for that information and website you gave me I’m sure it will be helpful for me, sue my doctor has me on Arikayce and that’s it I’m a little afraid about this whole thing g cause I’m not sure how long it takes before this Mac I have when the medicine will start actually work because it’s only been 1 week I’m on this medicine. I can’t stop thinking about this whole thing sue. I boil the water I drink, I do wear masks when I’m out in stores we have to anyhows. I’m so afraid of getting a cold or sick because usually when I do get sick it goes into my lungs I’m so so scared I’m constantly washing my hands afraid to touch my face even if I have an itch since I’ve been diagnosed for Mac I’ve been ok. Sue as of yesterday I lost my voice because it’s one of the side effects of using the medicine and I pray my voice comes back soon because now friends may think I’m sick and I’m not ugggh this is really frustrating to me I feel a little alone I can’t help it I want to cry sometimes I appreciate your help so much
Replies to "Sue thanks for that information and website you gave me I’m sure it will be helpful..."
@jr2366 The voice thing or lack there of from using Arikayce does happen. I had that in the beginning, but I took a break and have been good with that ever since. I do have voice issues if I talk too much, so I just explain it to my kids, and they are very understanding. My friends are very supportive. You need to tell your friends you are not contagious to them - you are only contagious to yourself. And you probably should limit friend time if they are stressing you out and for your own health. I feel you need some serious help with this. #1 You are not alone! #2 It is ok to cry. You will go through the stages of grief more than once. Hopefully, you have a supportive spouse? #3 Ask your doctor why he or she did not start you on the Big 3 prior to Arikayce! #4There is no single cure for MAC. I wish there was- God willing there will be a cure someday. I feel like somebody should have had a heart to heart with you so you would know the pros and cons of medication. Vitamin D supplements are important as well as probiotics. Stress is not helpful. And I realize you are a mom, so stress is a given. Please go easy on yourself. Buy a book on mindfulness. My infectious disease doctor recommended that to me plus Garden of Life drinks because my weight remains an issue. Please, above all else understand that your journey with this will have highs and lows, but you are never alone with this group. Always listen to your body and its infinite wisdom and act accordingly. Be kind to yourself Jennifer. @irene5
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Hello Jennifer - your feelings are very normal for someone newly diagnosed with a little-known illness.
The others who use/have used Arikayce can chime in here, but I'm pretty sure you need to report loss of voice to your doc. He may modify your regimen or have you take periodic breaks.
I should mention that Traditional Medicinals brand has 2 great herbal teas that can help - Throat Coat soothes the throat and Breathe Easy, which I drink every day, helps loosen mucus to clear lungs. They are available many places in the tea aisle - including Supermarkets, WalMart, and on line at Vitacost.com
Sue