If medication worked for you, did you begin to feel better right away?
I have two questions here.
My symptoms seem to be different than most. ??? I have lethargy, an achy body and a headache every time I wake up (like a hangover or what I’m guessing is lack of oxygen all night). I also have night hot flashes something fierce. My body aches are not crippling but it’s getting very hard to motivate myself to do any walking or exercising outside of work. I used to get up at five am full of P and V but now I don’t even want to get up. If it wasn’t for work, I swear I would sleep all day. This has all steadily happened in the past three or four weeks. Treatment is starting tomorrow (on my days off), but I wonder, are there many people like me who found out accidentally without a breathing problem beforehand? If so, did they find themselves aching, sore all over? Gradually feeling chest heaviness? I started coughing a bit yesterday but not sure if that was just from all the wood smoke from chimneys in my area (rural area).
AND, second question, if medication worked for you, did it get better slowly? Like over months? Or did you begin to feel better within a few weeks like you would on regular antibiotics?
It’s hard to get psyched up for such a long term thing.
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@traceyk I had the same symptoms prior to starting antibiotics minus headache. Extreme fatigue, terrible night sweats, cough and congestion, body aches, chest heaviness and pain in my lung. I couldn't even lay in bed so I slept in a recliner. The symptoms did go away after starting on the big 3 but I don't really remember how long it took. I want to say it took a couple of months and I gradually started to feel better. Since then, I've had no symptoms. I am back to my busy life, work, dinner, house cleaning, etc.
I went down hill slowly and I can’t say I felt great on the medication, although there was improvement. In the early days I also went to use a hyperbaric chamber and that helped me physically. Just couldn’t afford to keep up with it. The side affects of the Arikayse are as bad as having MAC but I was getting more oxygen in my system. The hyperbaric chamber can help a lot but keep taking medication the chambers won’t kill the MAC. Walking and breathing is much easier using the chamber.
My hair was turning white due to lack of oxygen and I am experiencing a return of hair colour. How dark I will go is anyone’s guess as I am in my seventies. Before coming down with the MAC infection I was doing 20,000 steps per day which gradually reduced to less than a 1000. I hope to get back on the treadmill soon.
How is your CBC complete blood count? They can be elevated with mac. Antibiotics will help bring these back to normal range. But improvement by oral big 3 is slow. Faster treatment is with antibiotic iv or inhalation
I found out I had Bronchiectasis by accident when my cardiologist did a CT scan to check my calcium score. I had lost weight and couldn’t put it back on, had chest pain, no energy, constantly clearing throat, coughing fits and horrible night sweats. When I started big 3 the night sweats went away pretty soon afterwards. I had stomach issues from meds. but I got thru the 18 months of treatment. I was not a happy camper during treatment but I was able to gain 20 lbs, no coughing or clearing throat constantly and no night sweats. I can’t say I’d go thru treatment again but in hindsight, I’m glad I did. Make sure you get baseline vision, hearing and get blood tests for liver function if you do meds. I didn’t do that until 6 months in and a new doctor monitoring me. I wasn’t given a choice before I started big 3 because I had idiot docs at first and they scared the crap out of me. (my favorite word that got me thru treatment was impermanence- no matter what’s happening, good or bad, is not permanent). It’s a lot finding out one has bronchectasis and MAC and life as we knew it has changed forever. I still struggle with airway clearance and it’s so time consuming but I know it’s super important. I feel blessed to have all the people in this forum and have learned so much. Good luck, Rosemary