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?

Interested in more discussions like this? Go to the MAC & Bronchiectasis group.

@jkiemen

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

Jump to this post

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.

REPLY
@jkiemen

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

Jump to this post

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

REPLY
@jkiemen

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

Jump to this post

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).

REPLY
@jkiemen

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

Jump to this post

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.

REPLY
@jkiemen

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

Jump to this post

Recliners work real well for my husband!

REPLY
@jkiemen

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

Jump to this post

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

REPLY

I try using my exercise bike and treadmill

REPLY
@jkiemen

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

Jump to this post

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.

REPLY
@jkiemen

I try using my exercise bike and treadmill

Jump to this post

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!!!!

REPLY
@jkiemen

I try using my exercise bike and treadmill

Jump to this post

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.

REPLY

I need a very firm mattress, too — I put my number at 85, which the installers of the bed were not too thrilled with. Sometimes when I cannot sleep, I put it up to 90. Slant is probably 45 degrees and I use several pillows too, or drop it to about 25/30 degrees and use the wedge, else, go to lounge chair or sofa. Would I spend $4,000 on a bed like this again, maybe not, but I just wanted to sleep in my own bed and went for it! One thing I did not like about Sleep number — the one side deflated–help desk person on phone wanted me crawling around on the floor which I cannot do – this was to test a couple things so the repair person coming out would have the right part. So, they wanted to charge me $180 for the tech to come and I balked and they charged 1/2 – kinda bad for a bed only 5 months old. Let me know if this does not make sense, be glad to explain further.

REPLY
@bschaper2

I need a very firm mattress, too — I put my number at 85, which the installers of the bed were not too thrilled with. Sometimes when I cannot sleep, I put it up to 90. Slant is probably 45 degrees and I use several pillows too, or drop it to about 25/30 degrees and use the wedge, else, go to lounge chair or sofa. Would I spend $4,000 on a bed like this again, maybe not, but I just wanted to sleep in my own bed and went for it! One thing I did not like about Sleep number — the one side deflated–help desk person on phone wanted me crawling around on the floor which I cannot do – this was to test a couple things so the repair person coming out would have the right part. So, they wanted to charge me $180 for the tech to come and I balked and they charged 1/2 – kinda bad for a bed only 5 months old. Let me know if this does not make sense, be glad to explain further.

Jump to this post

Sleep Number people in store stated a firm mattress is not good for me. They was not true but they also have a rather strange way of delivery according to a local moving coming. I am without return of money they unprofessionally kept in their pockets. They will not work with doctors.

REPLY
Please sign in or register to post a reply.
  Request Appointment