Long-term Antibiotics for Bronchiectasis & MAC

Posted by pejohnston @pejohnston, Feb 26, 2018

Diagnosed w/Bronchiectasis in 2008, MAC in 2011 and have been on many medications since then. Under control for several years, but reinfected a couple of years ago while on antibiotics. My body became somewhat immune to some of meds I was on. I am now taking several more drugs that have pretty significant side affects. Fortunately, I've been okay with them. Anyone else been on antibiotics for this length of time?

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@jkiemen

Which antibiotics are they? Have your CT's been stable?

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So a $8000.00 bed is not necessary. The bed was paid for in full but with the flu and medicine changes and a doctor's letter, the company had our money for 9 months and suddenly returned a part of it. They are in Ann Arbor - the same city as the University of Michigan. Our salesperson refused to answer phone when we saw partially returned refund. They would not work with us and kept part of money. We checked with Corporate and they said frame HAD NOT BEEN ASSEMBLED as store claimed. They will not respond to keeping a chunk of monies. They advertise on TV all the time and have their own stores. They literally ignored doctor's letter to them about hold on order. Nothing was made according to corporate. We were told to alert U of M about their business practices and to make this public as they don't belong to local organizations protecting customers. They have hundreds of our money, ignored doctor's ;letters and corporate and local confuse customers. They had thousands of our money previously.

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@jkiemen

Which antibiotics are they? Have your CT's been stable?

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With the wedge does anyone wear a CPAP and use oxygen at night?

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@jkiemen

Which antibiotics are they? Have your CT's been stable?

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I use Sleep Number bed, C4, and wedge also if I have bad coughing. If that does not work, I sleep in a lounger chair. I take the 3 big antibiotics (azithromycin, ethambutol, rifampin) with no problems and do take Ranitadine 300 mg at bedtime - actually helps coughing (and I know when I forget to take it).

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@jkiemen

Which antibiotics are they? Have your CT's been stable?

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I sleep in my new recliner. It works much better than the wedge I had used for over a decade. The $1000. price tag was more reasonable, as compared to the special bed. Acid reflux caused damage to my lungs, voicebox, and teeth. I had the surgery for hiatal hernia and esophogus, but continued to require PPIs and prescription strength Zantac. Now I'm working through an acid reduction diet to control the constant production of mucus.Waiting 3-4 hours before lying down has helped, too. But, with the chair I don't really lie down.

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@jkiemen

Which antibiotics are they? Have your CT's been stable?

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Recliners work real well for my husband!

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@jkiemen

Which antibiotics are they? Have your CT's been stable?

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@macjane Have you reported them to the Better Business Bureau? Bad business practices should be on their record to warn the potential future customers.

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I try using my exercise bike and treadmill

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@jkiemen

Which antibiotics are they? Have your CT's been stable?

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They are not members of the BBB and if a business refuses to act on a valid claim and they are members, the BBB will not act even if a member is found to be acting inappropriately. They have no legal directions against members. I just haven't heard about people using special bedding with a MAC infection or sarcoidosis. I can't sleep in a recliner.

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@jkiemen

I try using my exercise bike and treadmill

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I started back to 3 days a week, walking on the treadmill for 20 minutes. Also started private yoga lessons, learning how to breathe a bit differently which seems to have helped quite a bit - I will go to Gentle Yoga class after 2 months of private yoga lessons. Besides sleeping on sleep number bed with or without wedge, or in lounge chair, I also have put a bunch of pillows on the sofa and slept on them, too. I still get up a lot with coughing, no matter where I try to sleep. I know the antibiotics work on me, had to get off them for 7 weeks end of last year, due to reaction to Dexilant (substitute for Zantac 300 mg, which I am now back on again) - makes a world of difference for me, being on the big 3. And I have to thank Terri here - the physician you found in Orlando for me, finally saw him, thank you!!!!

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@jkiemen

I try using my exercise bike and treadmill

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Thanks for your info. Terri does seem to do a tremendous amount of working support. One last question. I need a very firm mattress. How much pressure in your mattress and does it have the part that will raise the head for you? Trying to sleep with firm pillows on an unraised head mattress does not seem to work. My PCP tried to work with the properly ordered new mattress set but they canceled order without our knowledge. Your reference to a sleep number mattress appears to be only one. We put up all the money for a very expensive bed that does not exist.

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