I am 41 years old and have had burning in my feet since I was 36. I have a long, long history of lyme disease and co-infections but most of my symptoms have been far diminished. I have been tested for:

MS
Autoimmune neuropathy
Diabetes
Thryroid disorders (have hoshimoto antibodies but no symptoms adhormone evels are good)
Celiac
Lesions of the brain and spinal cord
Heriditary neuropathy
Sjorens
CIDP
Food allergies
autoimmune markers
B defficiency (trying to obtain number from OCT blood draw but prior to that it was 408)

ALL NEGATIVE.

The pain and the disease are progressing. Within the first few months of this starting in 2009,the pain was so unbelievable, I had to go on meds. One day my feet were fine, the next I had neuropathy. I can tolerate nuerontin the best so I've stayed on it and ramped up to 3600 over time. I stayed at 3100 for alomst 2 years, until 3 months ago, when everything exploded and began rising up my legs. The pain is now so bad, I can't put blankets on, or it triggers worsening pain. My legs sting, burn and pinch. My feets burn, ache and feel stiff. I have body wide tingling and burning that just terrifies me. This WHOLE disease terrfies me!

I was diagnosed with lyme disease when I was 26 and spent several years of my life on IV antibiotics along with enough oral abx to literally kill several horses. However, I have not been on any of the antibiotics known to cause PN. In 2009 when this neuropathy started, my infectious disease doc IMMEDIATELY put me back on IVantibiotics (Rocephin) to try and stop the neuropathy. It didn't work. So I went to another guy who put me on another 6 months course of IV drugs- some so aggressive, I was bedbound for weeks on end. Again, it didn't work (still needed the neurontin). I remained on oral antibiotics (which make you so so ill, so much so you can' really function and can be worse then lyme itself), but i hadn't needed to ramp up the neurontin until now----4 months into an IVIG program. HUH?!

I went on the IVIG per a Yale neuro who studies lyme and what HE believes is no longer lyme this far in, but an autoimmune condition that lyme morphs into after it's been in the body for years. This is WIDELY debated and my lyme guy strongly disagrees and believes if you still have symptoms, you still have lyme (also quick to say ANY symptom you feel is lyme!!). Not sure which is right but together, we all decided it was worth a shot since the neuropathy wasnt relenting. I have been on it now since Oct of 2012 with ZERO benefit and only worsening problems.


___________

To start IVIG, I had to agree to stay off all antibiotics (had been off for about 6 mos already). Though we never made any real rogress WITH the antibiotics. I got on very potent stuff only ONE month after the PN started, I feel like if this WERE lyme related, the 3 years of lyme drugs that followed, should have done the trick!! But, this is the LONGEST I have ever been off antibiotics and now im in severe pain.

Could the IVIG actually make PN WORSE?

Can treating as if you have a B problem,without a B problem, still be successful?

Where the heck do you turn when you've exhausted what feels like EVERYTHING yet you are suddenly progressing? Ive been battling something or another since I was 26 years old. I'm a fighter. I can't believe there is NO way to help this!!!

Can ANYONE give me some insight or direction PLEASE?

Kate