Sorry to hear about all the trouble you are having with your pain, Allwrightann. I have late stage disseminated lyme, or neuroborelliosis, as it's also called. Sounds like you have it too. I went 36 years without being diagnosed/treated, and during that time developed an autoimmune disorder as well (Sjogren's).

Untreated lyme causes a great deal of damage to our bodies-sometimes this damage is permanent, sometimes it resolves with successful treatment. I've been treated for the past 2 1/2 years with various oral antibiotics, and I'm no where near cured. I think it's most likely that you are not cured either, despite the course of IV antibiotics you received. Borrellia are extremely hard to kill. I took Malarone for babesia, and it worked extremely well for me, but the lyme persists.

I have periperhal neuropathy too, but not to the extent you are experiencing. It is hard to control-finding meds to deal with the pain isn't easy. Most drs seem to recommend Cymbalta (an antidepressant). I was put on it, and it did work fabulously, but I had to discontinue it due to side effects. I was taking Topamax (an anticonvulsant) for it as well, and continued on the topamax after stopping the Cymbalta because it also worked to relieve the pain and pressure in my feet. I also discontinued it, not due to side effects (there are a few, but not enough to stop taking it) but because I replaced it with something else which also took the pain away just as well, with no side effects (dextromethorphan OTC).

I tried Lyrica as well and it didn't work for me either. If you haven't tried Topamax you might want to give it a chance. As for the dextromethorphan, it works well for me because it relieves the neuropathy as well as the various pains I experience due to Ankylosing (also an autoimmune disorder). I take 120 mgs daily and don't have any side effects from it. It's been a game changer for me.

I hope you find some relief. Living with pain is hard, especially when you're not sure about the cause. Good luck on your lyme treatment.