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Old 09-08-2011, 05:53 AM   #1
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Taken off all MAC antibiotics

My infectious disease doctor took me off all antibiotics this week because of extreme side effects. He has not told me what to do or what to expect now. I just know I have been very sick with the meds especially during the past 2 weeks - nausea and can't eat, re-lost the little bit of weight I had gained. Abdominal pain, peripheral vision problems, terrible muscle and joint pain in both hips and legs. Cannot sleep at night. Since I can't tolerate the meds then what happens? I know there are other meds he may try instead, but this is second time I've had to stop the antibiotics. Took different ones the first time that put me in hospital with near liver failure. I have to keep working as long as possible and yesterday I was written up by my supervisor and told if I missed any more work I wouldn't have a job. If I don't take any more antibiotics, what then? Any input would be appreciated. Everyone take care.

 
Old 09-17-2011, 02:17 PM   #2
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Re: Taken off all MAC antibiotics

Are you going to a doctor who is an expert in NTM diseases? This is very important - they can usually find something for you to take as a substitute. I think you should get a second opinion from another doctor and see what he recommends. I have had this disease and at first could not tolerate one of the medications, but my doctor was not very cooperative and I finally got a second opinion. The other doctors found something else that would work. I was on the meds for a little over 2 years and now have been off all meds for 2 years. Good luck.

 
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Old 09-18-2011, 09:38 AM   #3
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Re: Taken off all MAC antibiotics

Quote:
Originally Posted by Kathy1813 View Post
Are you going to a doctor who is an expert in NTM diseases? This is very important - they can usually find something for you to take as a substitute. I think you should get a second opinion from another doctor and see what he recommends. I have had this disease and at first could not tolerate one of the medications, but my doctor was not very cooperative and I finally got a second opinion. The other doctors found something else that would work. I was on the meds for a little over 2 years and now have been off all meds for 2 years. Good luck.

 
Old 09-18-2011, 09:49 AM   #4
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Re: Taken off all MAC antibiotics

My doctor treats other infections besides NTM. At my first appt. with him, he gave me the name of an expert in NTM in East Texas should I want a second opinion. I was impressed that he did that. Anyway he wants me to have my eyes evaluated ASAP and then come back in to see him and he'll make decision about restarting the antibiotics I was most recently on. This past week I have felt so much better and I am afraid of re-starting any antibiotics or even different ones. But I am unclear what course this disease will take if no meds are taken. Glad you're doing well and thanks so much for writing.

 
Old 09-18-2011, 11:43 AM   #5
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Re: Taken off all MAC antibiotics

When I was first diagnosed, the MAC was only in one lung. When my ID doctor would not find any substitutes for me when I couldn't tolerate the Rifampin, I decided to wait. I waited almost 2 years and then got really sick and found it was in both lungs. I wish now that I would have gotten a 2nd opinion and started on the meds sooner.

Everyone is different and this disease affects everyone differently so you have to make the decision on what is right for you at this time. Keep us posted on how and what you decide to do.

 
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