I have Neurological Lyme. I had lots and lots of seizures that even IV ativan could not stop. The seizures would cause my body to literally twist backward. My head would twist back to reach my feet. Almost every joint would twist backward. My fingers, wrists, feet... For hours! SO MUCH PAIN!!!! I had a PICC placed in July 2010 and have been on aggressive antibiotic treatment ever since. I was in a wheel chair for several months and then graduated to a cane. Now I can actually run a little. I had made amazing progress!!! Even holding a part time job. Way cool! But then I quit making progress. Now my doctor wants me to go off antibiotics for a month to see what happens. We tried that 5 months ago and I started having partial seizures. So I went back on. I've been off this time for 3 weeks now and have not been feeling well. I feel some neurological stuff creeping back. Does anyone have any advice for me? I don't want to stay on IV antibiotics! But I don't want those awful seizures either! I was diagnosed with Lyme in 2009, but I've been sick since I was 16. I trust in God's Grace and power to help me through this time. "I cry out to God Most High, to God who fufills his purpose for me." Psalm 57:2
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