6 weeks ago I was in and out of the ER with terrible head and neck pain. Finally after 2 weeks of misery I had some answers, a positive Lyme test and viral meningiris. A few days later I developed Bells Palsy. So the Lyme had clearly entered my brain. I was started on IV rocephin which I took for 3 weeks and 12 days of prednisone (40 mg for 7 days, 20 mg for 3 days and 10 mg for 2 days). I felt better for about a week. Then I developed more head and neck pain, fatigue and shortness of breath. This came on the day after I finished the prednisone. When I called the doctor about it, I asked if it could be related to the discontinuation of prednisone and she said it was unlikely and gave me one more week of IV rocephin. What makes this difficult is these symptoms could be related to ongoing Lyme effect or possibly Prednisone withdrawal. After three weeks of suffering with terrible head and neck pain and shortness of breath I went back to my primary doctor today in tears (I had been seeing an infectious disease doctor). She said the symptoms I am having could be related to many things:
A coinfection from the Lyme (awaiting blood work on anaplasmosis and Babesia... although false negatives are common)
Ongoing Lyme effect that could take months to resolve
Spinal headache resulting from lumbar puncture I had over a month ago.
The doctor wants to put me back on prednisone and taper me more slowly. I am afraid to be put back on it. I have already suffered through three weeks of possible withdrawal. Maybe I am about to come out on the other side of withdrawl. Do I want to start all over at 40 mg?
She also said if I don't feel better once we get me back on the presdnisone she would do a repeat MRI and look for a csf leak that may be causing the headaches.
I am just desperate to feel better. I am paying out of pocket to see a MD who specialize in lyme next week.
I have 5 kids age 4-15, two newly adopted, and I can barely get out of bed. Some days I get out briefly to drive them somewhere then crawl right back in bed.