posted
I just finished my fourth month of Rocephin and am so frustrated. I was doing fairly well until a few days ago when I didn't feel like I knew where I was. This feeling was gone the next day and then retured for two straight days-scary stuff.
I now have a return of very bad neuropathy which hasn't been so bad since I started the treatment. I don't know what to make of this. I thought exercise would help but was I wrong. The neuropathy is now off the chart.
For those of you who are on Rocephin and doing well did you feel consistently better after four months or did you ride the roller coaster too? Thanks.
Posts: 425 | From NY, United States | Registered: Mar 2005
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posted
I am on Rocephin, for about 11 weeks now. I can't really say I feel any better or worse. Just the same ups and downs of the disease before I started abx. I guess time will tell.
Posts: 374 | From United States | Registered: Nov 2008
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
I am on a temporary (I hope) break after ten weeks. I felt consistently better the first month, and many of my symptoms, including my pain, almost completely abated.
With the start of the second month however I began to experience extreme fatigue which never lifted and kept me completely bedridden. I still had a large number of symptoms get better or disappear completely.
I honestly felt if the fatiuge lifted, I"d be pretty functional, something I haven't experienced in years. I've heard from others that fatigue can be debilitating with Rocephin but can be worth it in the end, when one ultimately goes into remission.
I've heard around 7-9 months as average time for remission to set in. I'm trying to get back on it, hoping the good it did in the ten weeks will stay in place.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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posted
I am 3 months in and much better cognitively. I was not too bad in that area anyway but word finding and general memory back to near normal dare I say it. I second the major back pain. Burning down the spine and neck. I will be doing 2 more months then I am out of money.
-------------------- Pos BB and Bart(Q & H IGG pos) Began treat 1 year after start of illness. Diagnosed Feb 2007. Posts: 648 | From Ireland | Registered: Jan 2007
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
This is my second round. Two months the first time and all joint symptoms disappeared. My ID doc fired me and IV ended.
Treated with orals for about 15 months w/o improvement in neuro symptoms.
Currently in week 2 of IV Rocephin and find that my head may be clearer, but not much else.
Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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posted
Thanks for your replies. I think I will stay on it until I have problems with my gallbladder which I hope I do not have. It really hits the neuro problems and maybe I just need to be patient. Today I had a debilitating dizzy spell which I hope resolves soon.
I know of one person who was on Rocephin for three years but I don't think it is a good idea for me to follow that path.
Posts: 425 | From NY, United States | Registered: Mar 2005
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