I am wondering how many people here have unilateral versus bilateral tingling/burning/vibrations/shooting etc. pains?
My burning/tingling is always bilateral affecting both legs and arms. The shooting pains and vibrations are unilateral.
The reason I am asking is that a neuro once told me that Lyme neuropathies are usually unilateral/patchy.
Posted by sparkle7 (Member # 10397) on :
I didn't realize that my pain was neuropathy until recently.
It seems to move around. It's mostly on my right side but sometimes my left side will hurt.
I have pain mostly in my neck, shoulders, & lower back.
I did have pain in my knee one summer but it stopped.
I also have pain in my scalp in various areas.
I have never seen a neurologist. I just try to cope with it as best as I can by going to see my regular Lyme doctor who is a consultant - he's not a GP or LLMD (per sae). He does know alot & he's a nice guy who listens.
Posted by Curiouser (Member # 14128) on :
My tingling is on both sides - both feet, legs, hands and arms.
But it also happens on the left side of my face and tongue, not the right.
Pinpricks are mostly on the left side.
Pain is generally on the right side, with the exception of my hips and lower back. In those, it's on both sides.
My hip pain feels more like there's sand in the sockets, rather than an outright ache. Dunno if that makes any difference or not.
Posted by roro (Member # 13383) on :
mine is unilateral, on the right
the two severe back problems I have are on the left, so its likely that the lyme is causing the neuropathy and not radiculopathy from my herniated discs, spondylolithesis, facet, etc.
there are some bone spurs on the right
Posted by Michelle M (Member # 7200) on :
Bilateral.
"Dead" spots along both forearms, along radial nerves.
Confirmed by sensory nerve testing.
Corresponding textbook-fashion to large lesion in centrum semiovale region of brain.
This is a typical finding in neuroborreliosis.
Michelle
Posted by just don (Member # 1129) on :
BOTH!
Posted by SouthernCO (Member # 11167) on :
chamade:
My neuropathies are completely bilateral in the legs from the knees down.
My first neurological test was an EMG which showed bilateral L5 radiculopathy. This told me that the Lyme bacteria invaded the spine though degenerating disks and attacked at least the L5 nerves (and probably the L4 and S1 nerves) which comprise the deep and superficial peroneal nerves traversing down the lower legs from the knees to the feet.
If the symptoms are bilateral, the problem is most likely in the spine. Otherwise, the damage outside the spine would have to be essentially identical on both sides of the body to produce bilateral symptoms. It's purely a matter of probabilities as I understand it.
Posted by chamade (Member # 11472) on :
Mine is from my hips down and in my hands...tingling/burning/hypersensitivity with occasional stabbing pain. It was diagnosed as small fiber peripheral neuropathy by two neuros. Speaking strictly in terms of chances, this kind of neuropathy is unusual with lyme and more in line with metabolic disorders, toxic poisoning or autoimmune disorder. It is also the only symptoms that the abx aren't touching so I am a little worried that lyme isn't the causative factor.
SouthernCO: did your symptoms start in the toes and work their way up or?
Posted by SouthernCO (Member # 11167) on :
chamade:
The best I can determine, my bilateral radiculopathy/neuropathy started a few months after a very strong injection of Rochephin.
Mine started as numbness and tingling and muscle spasms on the outside of both legs from the knees down. One night I had what seemed to be a viral infection with sore throat, then the next morning the symptoms set in. So in my case it was literally overnight.
Since then, my legs feel like rubber when I walk.
After a epidural steroid injection 4 years ago (before Lyme diagnosis), severe pain has accompanied the numbness and tingling.
The areas of the legs affected has remained constant; i.e., so far, thanks to God, there has been no progression up the legs or to the arms.
Posted by Stoli (Member # 11175) on :
Mine is only on the left side from the elbow into my palm. Unbearable burning sensation. No abx for lyme or bart has touched this symptom at all, 14 months later. Cymbalta hasn't helped either. All the nerve testing was "normal".
I'm beginning to think it's a permanent conditon now.
Posted by Keshvara (Member # 13599) on :
Sometimes one can use Neurontin (or similar) or this type of pain. I'm not offering any med advice here, just my input.
Posted by shazdancer (Member # 1436) on :
This is from the National Institute of Neurological Disorders and Stroke, part of the US National Institutes of Health:
quote:Lyme disease...can cause a wide range of neuropathic disorders, including a rapidly developing, painful polyneuropathy, often within a few weeks after initial infection by a tick bite. NIH on Peripheral Neuropathy
Here's another good resource that describes polyneuropathy: Stoppain.org
The abstract from this study in Europe mentions symmetrical and asymmetrical neuropathies caused by Lyme:
I have pain on my right side from my neck to my foot, including my arm. I also have arthritis in my large joints on the right.
My head, neck and shoulder pain seems like it's all one pain. (The pain in my head is on the right side, behind my ear.)
I had Bell's palsy 4 years ago.
Just recently, I've had a bart herx and for the first time my left neck hurts and it's hard to turn my head. My head hasn't been in herx to this extent for more than several months.
daise Posted by chamade (Member # 11472) on :
SouthernCO: my tingling, burning and muscle twitching started suddenly as well. About 2 days after I recovered from a bad flu I went swimming and noticed some shoulder stabbing pains. Went home, started watching some TV and all of a sudden all my limbs and trunk started tingling, vibrating, muscles twitching everywhere - a very bizarre and scary experience. Then the annoying tingling turned into painful burning, headaches set it, eye pains, neck stiffness etc.
Shazdancer: you're right, symmetrical neuropathies do exist in chronic lyme, just somewhat less common then asymmetric ones. Gotta love it when neuros make blanket statements such as "you don't have Lyme because your polyneuropathy is symmetric and distal in distribution".
Posted by sparkle7 (Member # 10397) on :
What can be done about it?
Posted by SouthernCO (Member # 11167) on :
If you want a blank stare or a dose of steroids, ask that same question of a mainstream specialist in neurology or infectious disease who approaches $1MM per year.
I have enough problems trying to treat myself considering my brain is trying to function in spite of neurological Lyme.
From what I read here, some people are getting better with antibiotics. Others are getting better with herbals.
Since reacting badly to antibiotics, I have been forced to try herbals, massage therapy, acupuncture, and infrared.
My back and leg pain has improved about 50% so far since my diagnosis 11 months ago.
Do you have any suggestions?
Posted by daise (Member # 13622) on :
Hi SouthernCO,
Have you been assessed and treated for any co-infections?
daise Posted by SouthernCO (Member # 11167) on :
Hi Daise,
Yes, I was diagnosed with Lyme, babesiosis, and chlamydiae pneumonia.
My Dr. (Dr, M. in Co Spgs), closed his practice shortly after my 1st appt. Reacted badly to the antibiotics so have been winging it with herbals, Rife, etc. Fortunately, my wife is a neuromuscular massage therapist. With her help and other alternatives, I have made significant improvement with nerve pain in back and legs in past 11 months, thank God.
Worst symptoms are now neurological/cognitive.
Thanks, Dave
Posted by hurtingramma (Member # 7770) on :
Mostly on the left side. Once in a great while, when I'm really bad, I get tingling in my right foot also.
This has gotten better with treatment. If I have to go off meds for one reason or another, the neuropathy is the first thing that comes back, and it was the 1st symptom that sent me running to a neuro oh so many years ago.
Posted by laura j (Member # 14257) on :
Mine is mostly on the right. Interestingly enough, my tick bite was in my right groin area. I wonder if anyone else's neuropathy is on the same side as their bite?
Posted by cjnelson (Member # 12928) on :
Unilateral - left...
I recently read somewhere but cannot recall where...will see if I can find it and post...
that Lyme is typically unilateral and one of the co's is often bilateral....darn wish I could remember where.....
EDITED: it is stated in the Bartonella symptom list! but it is talking about stiffness/joint issues, may not apply to neuropathy exactly however it may?!?!
[ 18. March 2008, 07:37 PM: Message edited by: cjnelson ]
Posted by Piegirl (Member # 14786) on :
Most of my tingling, vibrating, stinging, and stabbing pains are in the left leg and foot. I have a reoccuring bullseye on my lower left leg. I get the neuropathy every day no matter if I currently have the bullseye or not.
I also do get some neuropathy in the arms and head. But, not as bad as the left leg and foot. I do get twitching all over, head to toe, every day.
I do also wonder if the area of bad neuropathy is related to where we were bitten. In my case, I'm starting to think it is.
![[Smile]](smile.gif)