posted
I have three types of neuropathy. Does borrelia burgdorferi (Lyme) cause neuropathy, or is it a coinfection? Both?
In an earlier post, I referred to the neuropathy as "neurological problems." I don't know if it makes a difference.
Does anyone else out there have neuropathy? It's a horrible thing and from what I understand, this will never improve - it will only get worse because once the nerves die, they stay dead.
Posts: 18 | From MI | Registered: Mar 2007
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bettyg
Unregistered
posted
i suggest you use search; found at top under NEW POST
type in neuropathy MEDICAL TITLE LINE ANY DATE
leave membership no. blank; hit send, and you should get a lot of posts.
start reading from the top on down to find out the answers yourself; good luck.
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Hi erleichda, I've had many symptoms of neuropathy but never been diagnosed with it. Bell's palsey (a well known symptom of lyme) is a form of peripheral neuropathy and peripheral neuropathy is often listed as a symptom of lyme disease. I don't know about co-infections and the liklihood of neuropathy with them. What are your neuropathy symptoms and perhaps someone can help with that?
The burning and cold sensations that I've had in my feet and hands have improved quite a bit since being on treatment (doxy and zithromax). Also, tingling in legs and feet is better as is skin sensitivity. These were some of the first things to improve for me.
My father had a very painful neuropathy probably caused by diabetes and his got quite a bit better when his blood sugar was under control so my experience and my dads experience is that it can improve. I think if one controls the underlying process of whatever is causing the nerve damage, the symptoms will improve since a lot of the painful symptoms occur while the nerves are being damaged. My father was told that the pain would get a lot better once the nerves were dead. ugh!
Hope yours gets better quick.
Terry
[ 25. May 2007, 02:06 PM: Message edited by: TerryK ]
Posts: 6286 | From Oregon | Registered: Jan 2006
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
I have had widespread nerve pain from my scalp to my feet. I believe mine is caused by Lyme, although Bart can cause CNS problems as well.
I have been on Biaxin/Amoxi for 9 months and the nerve pain has lessened, not gone, I do get days without nerve pain at all! When I do have nerve pain now, it can get bad when herxing and it is more "patchy" nerve pain now.
I know the antibiotics have helped but also I attribute the fact that I have also used high doses of Methylcobalamin B12 injections (only available at compound pharmacies) long term and will continue to do so, since it is showing in studies to regenerate damaged nerves.
Cyanocobalamin B12 is sold at commercial pharmacies but is very low dose and the liver needs to convert it, but does not do so at adequate amounts and I have not found anything that shows it regenerate nerves.
posted
I had peripheral neuropathy and nerve damage shown on a nerve conduction study. It had gotten worse over the 5 years it took me to get a diagnosis.
When I first started treatment with Ketek the neuropathy got worse. When I added in Mepron for Babs it spiked again but now (16 months into treatment) it is basically gone. I have a little tingling once or twice a month compared to daily tingling, burning, and numbness. It was one of the worst symptoms and I feared that the nerve damage was done and would never improve but it did.
-------------------- Lucy Posts: 342 | From Hawaii | Registered: Nov 2005
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posted
I am really glad I found this topic as I have been really sad lately. I have neuropathy so badly that my legs give out when I walk, I walk with pronounced numbness and feel like I don't have control over my legs. Then the searing pain sets in......
I have seen the neurologist for this and it has gotten worse over time for me, not better. It goes from my scalp to my toes.
I have had Lyme for 30 years, dx'd for 9 and treatment for the same. Never any difference for me. Just worsening.
Hoping my story turns out like some of yours. I have had three Bell's Palsy's, chronic neuralgia with it concentrating in my head (OUCH!) and no feeling in my hands, fingers to the degree I can hardly feel external stimuli.
But internally, WOWZERS. Feels like someone is living inside of me taking their revenge. Hey wait... THEY ARE!
-------------------- ...~*Just keep swimming, Just keep swimming*~... Posts: 120 | From New Jersey | Registered: May 2006
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posted
I had excruciating neuropathy that completely cleared with photonic stimulation treatments.
It uses a non invasive near infrared light. Best of all you don't have to take any pills!
If interested go to CTI-net.com. I have no financial ties.
Posts: 925 | From California | Registered: Sep 2004
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caat
Frequent Contributor (1K+ posts)
Member # 2321
posted
lots of things can cause neuropathy. You need to be more specific. Doing a search here will help.
Posts: 1436 | From Humboldt county ca usa | Registered: Mar 2002
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posted
Thank you everyone, for your responses. I apologize for posting my message. In addition to the messages here telling me to do a please do a search before posting, etc., I received many private messages telling me the same thing. Someone even emailed me the 56 page Newbie welcome message (thank you - there's a lot of great information in it).
I am fairly new here and I am used to more informal message boards. So, I am so sorry to all of you for wasting your time.
Breezywings, I can relate. I feel like I'm so alone with this. I was diagnosed with small fiber and large fiber neuropathy last fall, and most recently, autonomic nervous system neuropathy.
Last fall, I had numbness, tingling, burning, etc. It was annoying, but I could handle it. At the first of the year, I got a new pain mgmt doc who does cortisone injections for my degenerative spine. I've only recently discovered for myself that I might have Lyme, and learned what steroids do...
Since January, my neuropathy has gotten a lot worse. It's spread everywhere, like yours, head to toe. My face is on fire 24/7, like the worst sunburn. Sometimes it feels like I'm wearing a body stocking of numbness, then the tingling, burning and stabbing pain strike. My left arm and leg are much weaker and I can hardly use them. I can't use the third and fourth fingers on each hand. The twitching and shaking is bad. And the vibration - I feel like someone is running a slow speed dentist drill somewhere in my body. Tests revealed I have almost no motility in my digestive system. I could go on and on.
Feeling like "someone is living inside of me taking their revenge" is right. My neurologist repeated the EMG a month ago and my neuropathy is much worse than it was last fall.
Lymebytes, thank you for the info about Methylcobalamin B12 injections. I had previously asked my PCP about B12 injections for neuropathy and she said that it would only help if my neuropathy was caused by B12 deficiency. Based on what you said (about regenerating damaged nerves), I will try again.
Terry, "Ugh" is right! Pain is bad but so is the numbness. I don't want all the nerves to die. That's great to know that it can improve.
Thanks again to everyone and again, my apologies for my message. I wasn't thinking clearly - I have terrible brain fog and I get confused so easily. I'm still not even sure what I did wrong (but I will figure it out), so I will get to know Lymenet before I post again. Sorry!!!
Posts: 18 | From MI | Registered: Mar 2007
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