Thank you Katherine for responding to my post. I was on rifampin and<br />
ethambutol and azithromycin for 1 year, it didn't stop the spread of the<br />
mac besides having bronchitatsis. So then I met with Dr. Aksamit, he is<br />
wonderful, knowledgeable and kind, the best! I was taken off azithromycin<br />
and rifampin, which turned my urine yellow, and put on claritromycin and<br />
rifabutin and ethambutol again. The rifabutin I feel turned my skin<br />
bronze. I was on those meds since last June. I had to go to the<br />
ophthalmologist every 3 months. Now I wonder about my eyes as I too can<br />
not read the green overhead signs or the smaller ones. The eye doctor<br />
would always ask me if my sight has changed, I did mention I couldn't read<br />
the street signs until I was right below them. I wasn't taken off<br />
ethambutol though. Just recently the concern over the bronze skin color,<br />
the doctor took me off all 3 meds plus crestor. I was wondering if anyone<br />
else out there took rifabutin and if their skin as well as urine turned<br />
bronze. I am getting some more tests done to figure the yellowing all out.<br />
I seen that you did the amikacin 2 ml inhaled 3 x a week plus. Did that<br />
have clofazimine in it? I guess there is a possible enrollment into the<br />
liposomal amikacin trial. How was that? Was it awful? Bad taste in your<br />
mouth? Please tell me something about it as I think I might be going to be<br />
doing something like that.<br />
<br />
Since I was due for cataract surgery, that might be why I couldn't see<br />
that well. I have had it done, will see if the signs are any better when<br />
I get my new glasses.<br />
<br />
Do you have to have oxygen? I have difficulty with shortness of breath<br />
after a brief walk, very brief. But my oxygen level is 98, that's good.<br />
I am not on oxygen, thank the lord. My only problem is being tired and<br />
sleeping for 2 1/2 hours most every day. My appetite isn't very good, but<br />
I eat small portions, did you lose weight at all? I did. Am now taking<br />
Ensure, Enlive with lots of good nutrients in it. So thankful you take the<br />
time to answer people. You are a saint!<br />

Weight loss is one of my problems. I have no appetite and no one to prepare food for me. I've lost about 15 pounds. I've had MAC and bronchiectasis for six years; have never done the meds but think I will give them a try. I've done fairly well without them but I'm getting more fatigued.I'm Just wonder if anyone else is worried about weight loss. My family doctor thought it was the right thing for me to not take the drugs since my quality of life was pretty good. That has now changed. I am about to be 80 years old, walk and work out at a gym. I cough a great deal whenever I lie down so bed time is a bit ragged. Thanks for any response.

flib, you may laugh at me .. but when I was losing the most weight .. I ate bacon every morning .. and about one fifth of a gallon of an ice cream that I just love every evening! I know that is NOT very heathy and I an not advocating that for anyone else .. but I wanted to try to maintain my weight! Then as the antibiotics helped and I got better .. broke my heart that I had to give up my nightly ice cream! But I'm sure it has been much better for my cholesterol! I am telling you this so if you will eat ANYTHING .. just eat what you will!

Another thing .. I also coughed a great deal at night. It helped quite a bit to raise the head of my bed 4-5 inches using "bed risers" that you can get online .. PLUS I read someplace to sleep on your left side .. can't remember the exact reason .. but that has helped me to start the night by sleeping on my left side. Hope this helps just a bit. Katherine

If affordable for you (is for me and I'm on disability) there's many online<br>services that will deliver ready-made meals or easy to prepare fixins' to<br>your door! They're yummy and may help you gain weight as sounds like part<br>of the problem is the difficulty of doing all that cooking to get a good<br>meal into you! <br><br>Schwann's is one I've used (both meals and fixins') - also protein shakes<br>will help greatly. I think it's worth the try to first see if your weight<br>loss is the biggest fatigue culprit before going on the drugs.<br><br>Hope this helps!<br><br>Terri

haha @katemn each time I see your pic I will now think of bacon and ice cream. I am losing weight too so will have to get my morning and evening foods sorted, maby cheesecake and cheese on toast I think!

Hey heathert! With those darn critters in us .. we need to find some fun in this process! Whatever it takes .. we will do it .. with a chuckle along the way! Sending you a hug! Katherine