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Talk to me about your MAC journey please
MAC & Bronchiectasis | Last Active: Mar 7 3:34pm | Replies (12)Comment receiving replies
Hi Pacathy, tnx for the reply.
You mention to find a good support and helpful group. I was hoping this would be it?
Yes, they grew 3 sputum samples 3 years ago. At first I was told 2 sputum came back positive and one negative so they said I had TB. The following year I went back to doc very sick. Year 2.
About 8 months ago, I was tested again. 3 Sputum came out positive for MAC. That I have had all along for 3 years now.
It seems to be running harvick on my body with sore, painful muscles and pain in my joints. (Now i am older so some of this comes with age). A month ago they did a procdure on my lower back. Yesterday i had shots put into my left and right Sacroiliac Joints. Ouch..
Has anyone had any of these symptoms of very sore muscles and joints?
Aaches and pain different in parts of my body. Im Worn out, feel uncomfortable, fatigued often, difficulty breathing as I try to get something done. I'm just tired of it all..
Replies to "Hi Pacathy, tnx for the reply. You mention to find a good support and helpful group...."
I’ve just started the MAC journey so don’t know a lot. I had terrible body aches for a while. They took me off albuterol nebulizer and gave me a levalalbuterol inhaler. MUCH better…less trembling, aches, jitteriness. I also had just started a statin and went off that as it can cause body aches so I’m not sure which was the cause….maybe both? I’m taking good curcumin for inflammation, too. Hard to say what causes what, but I feel MUCH better!
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Sorry. I didn’t put “here” at end of sentence about the support group. I have found this group to be the most knowledgeable and helpful one I’ve tried.
Are you on the meds for MAC? I see you have an ID doc that specializes in it and that’s a good thing.
It’s also good that you’re healing enough to cough out mucus. I don’t see your airway clearance routine-are you on one? It’s the basic treatment for bronchiectasis and even those of us without MAC are taught to do it every day. If you haven’t been taught to do it, we can provide resources.
I can’t answer about the muscle aches. I was thought to have MAC based on CT’s, but cultures at Mayo were negative.Therefore, I haven’t been on any of the meds. I do think the fatigue and feeling short of breath are common.
I’m so sorry you’re feeling so miserable and hope the injections give you relief.