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C.T. scan at 9 months of antibiotics

Posted by kasper1 @kasper1, 3 days ago

So been on the big 3 for 9 months now . I take them 7 days a week. But the last 3 months I have cut out Saturday and Sunday just for a break on the antibiotics. I am breathing better ! I can walk , I can get my laundry out of dryer without being short of breath ! My only issue I have had has been leg pain . Muscle cramps also in my hands . My question is my doctor told me my C.T. scan showed my cavity has gotten bigger but since I'm doing good. He will just check my C.T again in 6 months . Just wondering if that is right ?

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melanie33 | @melanie33 | 2 days ago
In reply to @bayarea58 "@kasper1 I totally understand about the Arikayce, I had a lot of issues with it myself...." + (show)
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@kasper1 I totally understand about the Arikayce, I had a lot of issues with it myself. I know a few cavitary patients who were not able to tolerate the Arikayce who were taken off Arikayce and put on Clofazimine instead. This is where having a true NTM expert becomes invaluable, figuring out the options when the standard treatments aren’t working effectively. I also understand your concerns about insurance. I am with a large HMO who refused to pay for an outside expert, despite not having their own NTM expert. I pay out of pocket for my outside experts. I have had two. I started at NJH and am now at UCSF. It’s not cheap, but it is absolutely worth it to me. The difference in the level of care is extraordinary and if you can swing it, you will not regret it. There are ways to keep the out of pocket costs within reason, so if this does become an issue for you, please reach back out and I will share my experience in this regard.

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@bayarea58 I am interested in your experience with navigating NTM centers having an HMO. I have an HMO, as well. Being newly diagnosed, seeing a local pulmonary & Infectious disease group, I do not know how up to date they are with BE & MAC. Cleveland Clinic in Weston is only 2 hours away. Any advice, suggestions would be much appreciated!

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bayarea58 | @bayarea58 | 1 day ago
In reply to @melanie33 "@bayarea58 I am interested in your experience with navigating NTM centers having an HMO. I have..." + (show)
Profile picture for melanie33 @melanie33

@bayarea58 I am interested in your experience with navigating NTM centers having an HMO. I have an HMO, as well. Being newly diagnosed, seeing a local pulmonary & Infectious disease group, I do not know how up to date they are with BE & MAC. Cleveland Clinic in Weston is only 2 hours away. Any advice, suggestions would be much appreciated!

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@melanie33 give me a few days to get back to you on this. I think there are others who may benefit from the information so I may make a separate post and describe my experiences and approach at both NJH and UCSF.

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melanie33 | @melanie33 | 1 day ago
In reply to @bayarea58 "@melanie33 give me a few days to get back to you on this. I think there..." + (show)
Profile picture for bayarea58 @bayarea58

@melanie33 give me a few days to get back to you on this. I think there are others who may benefit from the information so I may make a separate post and describe my experiences and approach at both NJH and UCSF.

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@bayarea58 No rush! I am very appreciative you are taking the time to help whenever it is convenient for you. Yes, I agree others will benefit, as well 🙂

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