First of all, keep in mind that I am unable to diagnose you because I am unable to examine you, this forum is for educational purposes. The symptoms and history that you have provided is complex and there is a lot of information that I do not have. From the information you have related I think your concern about Lyme disease is valid. Certainly many other things could cause your presentation including viral encephalitis, multiple sclerosis, migraine headaches, stress, etc. but Lyme is treatable and hard to diagnose. The tests for lyme can come normal unless treatment is started, because the borellia burgdorferi (agent that causes lyme) is immunosuppressive. I would recommend a trial on antibiotics.
From the symptoms your describe, I would also recommend a Lumbar puncture (if not done) for cell count, protein, glucose, lyme PCR, HSV PCR, west nile PCR, tourtelotte panel, culture and gram stain, oligoclonal bands (your neurologist will know these tests). In addition, I would recomend you get a brain SPECT scan (this evaluates blood flow in the brain and can show restricted blood flow even with a normal MRI, this is often seen in lyme disease). I would also make sure that your EMG included nerve conduction studies for carpal tunnel due to your waking up with hand pain/numbness. There are many medications for neuropathic pain and I would suggest that if the one is not working increase the dose, then switch to another (they include: neurontin, lyrica, elavil, pamelor, desipiramine, effexor, cymbalta, maprotiline, etc.)
I would also suggest formal neuropsych testing and MMPI to evaluate your cognition and reactions to stress to prove to your doctors that you have a valid disease that needs treating and whether depression management needs to be part of your treatment.
I hope this has been helpful.
Thank You All So Much
ResQBeca
I lost just over 15% of my body weight (200 pounds to 170), and was in very good physical condition at the tiume of the illness. I have regained feeling in my cheeks, but still have numbness on my forehead, and "below the belt." The nerve pain in my left leg, which was excruciating, is now gone. I am concerned about sexual function, and the degree to which I can encourage nerve regeneration, either homeopathically or by use of alternative drugs if need be. It has been 11 months since the attack, and I am trying to be as patient as possible. Is there anywhere I can go for additional information?