Hi all. I know that neurapathy is part of lyme especially the tingling etc.
Does it go away with treatment? I also know that symptoms come and go.
I'm also on tindamax which can cause this.
Do any of you take b12 or benfotiamine to help help the nerve damage.
Look forward to hearing from the experts here.
Janice
Posted by kareamber (Member # 20110) on :
Well I'm definately no expert, but am experiencing the same thing. I've been taking Flagyl and have recently noticed an increase in neuropathy: tingling in hands, and burning sensations. I'm wondering if it is the lyme or a side effect of the Flagyl. I do take B12 Meth. Don't think it is helping much though
Posted by janice victorov (Member # 22937) on :
Kareamber, I know that taking flagyl and tindamax can cause tingling etc.
My doctor said to add a extra dose of vitamin b6 when this happens.
I just started on it so don't know how effective it is yet.
JKV
Posted by cactus (Member # 7347) on :
B-12 injections helped me significantly.
No preservatives, need to get them from a compounding lab.
Posted by janice victorov (Member # 22937) on :
Cactus, What is a compounding lab? Thanks, Janice
Posted by cactus (Member # 7347) on :
A compounding lab can mix up your meds per your doc's exact instructions.
I'm in VA, too and the compounding lab I use is in Leesburg, but there are several different options.
To get the injectable B-12, with no preservatives, my doc had to write the scrip, and explain to me where to take it (I had never used a compounding lab either).
I used methylcobalamin B-12, preservative free, as recommended by Dr B.
Injected it once a day... it took a few weeks but I did see results.
Also got decent results from Cymbalta (used for peripheral neuropathy) but if I were to do it over, I would try B-12 first before adding a med like Cymbalta.
Posted by janice victorov (Member # 22937) on :
Cactus, thanks for the info. When I first started back to work, I got b-12 injection from the LLMD. Is that the same??
JKV
Posted by cactus (Member # 7347) on :
Probably the same - although it sounds like you had only one injection? So maybe not.
I did daily injections for several months - at least 6 mos.
It took a few weeks to really see a difference in the tingling.
Posted by janice victorov (Member # 22937) on :
Cactus, yes, only had one injection.
Since using the b12 shots, did the tingling come back? Did the b12 keep the tingling at bay?
Thanks for all the helpful information.
Posted by Sick Tick (Member # 23003) on :
I read on a neurology site regarding neuropathic pain that the nerve cell damage is slow to recover..months, maybe a year....and that relapses of the pain/tingling/numbness are common during this period. They are not sure why these occur. I know that mine at this point can be almost non-existent, and then occasionally flare, but milder and for a shorter period of time each time.
I have not found anything that helps with it, only things that make it worse....alcohol!
I have heard folks here say that Neurontin worked for them.
I do take oral B12, and include omega 3 in my diet.
Posted by Hopeful2010 (Member # 22958) on :
My doctor said that 80 % of people can get permanent neurapathy from Flagyl. He's not an LLMD. He let me go on Flagyl for 2 weeks and then told me to stay off it for 3 months.
I do hear that Flagyl or Tindamax is one of the most important parts of treatment. I will probably try Tindamax next time.
Posted by sutherngrl (Member # 16270) on :
Exactly what Sick Tick said. I had tingling every day for years. After a year and a half of treatment, I am down to practically non-existant tingling, with an occassional flare.
I took Flagyl for one month with no problems.
Posted by Toppers (Member # 20083) on :
Had this non stop with extreme burning until I took rifampin/ceftin/biaxin in different combos. Used to not be able to sleep it was unbearable.
Not sure what killed what but it's not here anymore thank god, but it flares here and there.
About once a month if flares full force out of nowhere and I'm reminded how nice it is to be here, and not where I was.
Good luck!
Posted by Sick Tick (Member # 23003) on :
What the heck is it with the once a month thing?! I keep seeing that here and also have that happen myself, and wondering why? I have heard that it is because;
1. Hormonal issue in women....coincides with periods. Guess what...I don't HAVE them any more!
2. Dumb spirochetes being born and then being killed off....except that I am not on meds, so if they are dying, maybe my immune system is doing it on its own?
3. Coincidence....hardly. Look how many of us do it!
4. neuropathic pain does that...OK, but what about the other symptoms folks have on a monthly basis?