For those of you who are following my saga, I was diagnosed with Lyme-related peripheral neuropathy while hospitalized a week or so ago for severe pain in my feet and legs.
Since then, I was put on Neurontin 300mg at night, Oxycontin 2/day, and Vicodin for breakthrough pain. I am also on Ketek and Tinidazole.
My neuro. is adding Imiprazole 10 mg. at night because the Neurontin and pain meds aren't eliminating all of the pain, get it down to a 5 out of 10.
Is anyone on Imiprazole as well for peripheral neuropathy pain? I am scared to death to take it, read all of the side effects and freaked out.
Posted by winsomme (Member # 5623) on :
i know that the neuro Dr K in Orange, CT treats the peripheral neuropathy aspect of chronic lyme with IVIG.
let me know if you want his contact info.
thanks bill
Posted by Foggy (Member # 1584) on :
Hang in there IHM, my PN got better in time with treatment and with Alpha Lipoic acid. I had looked into IVIg but it seemed hit or miss.
Posted by lymie tony z (Member # 5130) on :
I never got any relief from any of the anti-convulsive meds for my periph/neurap and the oxycocontin really constipated me. Have you ever gotten any iv abx's? Furthermore I have noticed a lessening of my neurapathy symptoms with Ketek.... I'm not familiar with the med you have been prescribed unless it's a generic for Topiromate the pain management duck put me on in the VA. After walking that up to 125mgs I started to experience narcoleptic seizures...so as far as an anti seizure med it gave me seizures...it never helped the bee/wasp stings or burning sensations in my legs and feet anyway. My suggestion is to keep going with abx's and see which one gives you some relief from the neurapathy. Mine was as bad as yours at one time but not as bad anymore.............zman
p.s. You are aware nidazoles often cause neurapathy in some people ? ------------------
[This message has been edited by lymie tony z (edited 21 June 2005).]
[This message has been edited by lymie tony z (edited 21 June 2005).]
Posted by lhm312 on :
I had been on IV Rocephin for 7 weeks a few months after my Lyme diagnosis, am hard-pressed to consider another IV now unless it was the absolute answer.
What exactly is IVIG?
Foggy, what treatment were you on?
Tony, Imiprazole is Tofranil. What finally worked for you? I am already on Ketek and Tini.
Thanks for your replies.
Posted by docdave130 on :
if it pn on one side of the body they may be able to do a spinal nerve block with marcaine and cortisone or benadryl this may last sevral weeks to months and give you relief. new stuff is botox at nerve site. would be very cautious if this, they do it for sweating in florida on the vagus nerve. if both side then a block may be out unless you want to be bedridden for weeks,but you'll be pain free.
Posted by Troup Brazelton (Member # 6297) on :
Have you considered a blood thiner? Somewhere on this board there is a thread that talks about how pain is caused due to hypocoagulation due to lyme. As the blood is constricted in the muscle due to being thick, it causes pain. Low to moderate doses of halprin( I think) was the remedy.
Posted by docdave130 on :
heparin
Posted by Foggy (Member # 1584) on :
quote:Originally posted by docdave130: if it pn on one side of the body they may be able to do a spinal nerve block with marcaine and cortisone or benadryl this may last sevral weeks to months and give you relief.
Yikes! Injecting Depo Medrol or similar cortisone into the thecal/epidural space of a Lymie could be a DISASTER. I speak from experience. Caused the most intense burning PN that I was rushed to the ER and given healthy pain meds. It was agony!
I'm also very frightened by the thought of bathing delicate spinal nerves with long acting Cortisone and preservatives that may be lurking in the suspension like Benzyl Alcohol. Potential recipe for demyelination, Arachnoidtitis, Cauda Equina, and other nasty implications.
A LLMD would render an adept opinion on the subject, and of course, reactions are idiosyncratic.
IV Claforan and IV ALA were very helpful for PN.
Posted by achey (Member # 6284) on :
Im B-12 injections and Meyers cocktail Iv really helped my PN until abx kicked in. I still get tingles and numbness, but the horrible nerve pain is gone....
I can't tolerate pain meds, but also use Tremeel..homeopathic from HEEL, and various suppliments... And Integrative Manual Therapy (IMT)....(See www.centerimt.com) I've had a lot of nerve healing..still a ways to go.
Hope this helps. Wish you well!
Posted by winsomme (Member # 5623) on :
IVIG is pooled human IGG antibodies that when given in high doses can potentially stop an overactive immune system from damaging the nerves.
if you put up a post for "IVIG" i'm sure you will get a more detailed answer about how IVIG works.
thanks bill
Posted by janet thomas (Member # 7122) on :
pooled human IGG antibodies
Think of all the infectious diseases for which bank blood is not tested.
Here's 2-Lyme and Babesia.
Posted by DolphinLady (Member # 6275) on :
The photon stimulator is being used successfully for PN (usually associated with diabetes).
Current studies are underway at UCSF.
Look up photon stimulation on a search engine for more info. I'm not technical.
I use it and it does help me. Some folks need to go slower than others. Something to know about.
