I have been on various abx (doxy, zithro, levaquin) for 4 months now and most of my symptoms (shooting pains, stiff neck, headaches, eye pains, tingling, mild fatigue) have resolved. The burning and feeling of stiffness in my lower legs and feet just won't go away though. It gets better for a few days then flares up again. I think activity irritates the nerves and makes it worse. Removing shoes and socks gives me a little relief so it must be small fiber neuropathy. Anyone else have this? I am hoping this is not some autoimmune process, because the abx aren't touching it.
Posted by cmoc (Member # 5135) on :
Stiff behind the knees and ankles, especially when I first get out of bed or have been sitting for long. Feel like I am 90, it gets better when I get moving. I am waiting to see some improvement in this as well.
Chris
Posted by kath628 (Member # 12977) on :
Most of my pain and stiffness is in my lower legs and fingers. My feet especially, and the soles...Owww....they hurt so bad in the morning. I was always a barefoot and flip-flop person. This summer, if I wear flip-flops for a day, my pain is aweful next day. I guess its supportive sneakers for me from now on. I'm only a week into my abx so hopefully this is better by next summer season!!
Posted by Dave6002 (Member # 9064) on :
When I was very sick, the burnings on my hands and legs were unbearable when wearing gloves or socks.
With treatment, the burnings have been greatly reduced in a couple of months, and become bearable.
However, my hands and legs are still burning, painful and numb. Recently, these symptoms have been exacerbated and are untouched by anything.
I tend to think these symptoms are due to the inflammation of the central neurosystem, since they are symmetric.
Posted by chamade (Member # 11472) on :
According to my neuro and LLMD glove ans sock distal sensory problems are typical of peripheral neuropathy. It could also be the dorsal sensory ganglia, which Lyme bacteria loves.
Brain sensory disturbances tend to be more patchy from what I have read.
I really wonder whether anyone got rid of their limb burning paresthesias with antibiotics...
Posted by Dave6002 (Member # 9064) on :
I could be wrong, but peripheral neuropathy cannot explain pure symmetric symptoms.
My symptoms are 100% symmetric. I haven't noticed a slight difference.
While peripheral neuropathy may produce asymmetric symptoms due to that pathogens are unlikely to attack peripheral neurofibers of both sides the same way (same pathogen numbers, same time, or same amount of biotoxins, or same recovery rate of the fibers... so to cause same damages all the time).
However, this just my guess.
Posted by kelmo (Member # 8797) on :
Dave--my daughter is having the same problems. I'm sure it's caused by inflammation of the spinal cord.
I don't know what to do to make it better.
You would think a spinal block or something to shoot antibiotics in the spinal cord would help.
Do people get better results with IVs?
Posted by BartonFink (Member # 10818) on :
quote:Originally posted by Dave6002: I could be wrong, but peripheral neuropathy cannot explain pure symmetric symptoms.
My symptoms are 100% symmetric. I haven't noticed a slight difference.
While peripheral neuropathy may produce asymmetric symptoms due to that pathogens are unlikely to attack peripheral neurofibers of both sides the same way (same pathogen numbers, same time, or same amount of biotoxins, or same recovery rate of the fibers... so to cause same damages all the time).
However, this just my guess.
Good point. I have the same problem. Always symmetric burning. And no idea what could help. Posted by davidx (Member # 8326) on :
Kelmo-
I have peripheral neuropathy (sensitivity to touch...clothes especially in certain places). I started IV rocephin about 5 weeks ago so I will certainly let you know if it helps.
I wonder though how long it takes for the nerves to repair (if they can) once the lyme is mostly cleared.
![[Frown]](frown.gif)