My husband was bitten by something summer 1994 - developed apparent EM rash and flu-like symptoms. ELISA test for LD negative at that time but treated with 200mg doxycycline for 21 days. Neurological symptoms appeared in week 3 of treatment - numbness on forehead, ticklish sensations in head, hyperacusis, urinary delay, tingling at bottom of spine and behind knees. MRI of brain and spine clear, knee X-ray clear. Urinary delay and hyperacusis have disappeared over time, a feeling of pressure in head has appeared and tingling spine / knees has developed into severe pain in lower back / coccyx area, across buttocks and down legs as far as knees. Skin on thighs is sensitive to the touch. Knee pain is both behind knees and on kneecap. Exercise causes knees to become red but they never swell. One leg is much worse than the other. Sometimes, his kneecaps feel very cold to the touch compared to the rest of his leg. Second MRI of brain and spine were also normal. Tests for RA, lupus, and all other blood work clear.
Neurologist was not satisfied that this is Lyme Disease but could not offer alternative diagnosis - he prescribed low dose tricyclic antidepressant for pain. ID Consultant did Western Blot test for Lyme Disease which was equivocal. He decided to treat on the basis of this plus clinical symptoms. Currently at week 4 of IV rocephin.
My concern is whether this description of his leg pain fits with inflammation of nerves or nerve roots caused by Lyme Disease? Or could we be missing some other neurological problem?