My husband has had horrible symptoms for 8 years and continues to deteriorate. He had a bad tick bite that was nacrotic(sp?)and the doctor thought he might even need a skin graft about 10 or 11 years ago. The sore healed over a very long time without a graft.
We roamed all over central NY in the summer and fall for several years in that time period, but don't remember any bites then. We don't remember the rash or fevers, but it was a really long time ago. His bite occurred in Colorado while on vacation when he got it so terribly infected???
His symptoms started with horrible leg cramps, then shooting/stabbing/amputation feelings in leg. Eventually he had symptoms that sound like a heart attach (it's not), weird muscles (large ones) that get to ticking, electrical sensations running up and down his legs usually, jaw pain, nasty sweats, inability to control his body temperature, strong reflexes in his knees and ankles, I often can't touch him, if I have to wake him up he startles like a bomb just went off next to him.
I can feel the electrical sensations that he reports in his legs. If I put my hand lightly on his feet or sometimes on his inner thigh it feels like teeny tiny thumps all over the area I'm touching. You can't see it, however.
It's been a LONG 8 years and he's had 3 lymes tests, but the last one was probably 3 years ago.
We've been to autoimmune docs, many neurologists, lumbar puctures, MRIs, catscans, lalalalalala. No real results. Meds don't help. He's off the oxycodone and using suboxone to try and give his system a break.
He was always a clean living guy. No drugs or hardly any alcohol. He hasn't worked in 2 years. Many days are spent in bed, but sometimes he has good days and we're able to do something for a few hours. I'll go anywhere, take 3 full time jobs, go broke (we're almost there anyway), or sell my soul to get him well or even just functioning.
Do you believe the lymes tests he took or is there someone who can do a true definitive test on him? It's been miserable trying to cope with no diagnosis for so very long. Thanks.
I have all his medical records and can send them anywhere.
Posted by nonna05 (Member # 33557) on :
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