Has anyone been experiencing neuropathy or altered sensations in their feet. I have complained to all doctors, lyme literate and not since 2011. Neurologist can not explain why I have it, but there is a measurable deficit in nerves in my feet and it is getting worse. Use to be only when my feet were cold. Now it is most of the time. I started getting a lot of cramping also.
My lyme doctor got fed up with me asking questions and not blindly doing all that he asked. Wouldn't return my calls. I stopped going and now he will not take me back so am back to square one. But really concerned about my feet.
Posted by lookup (Member # 44574) on :
I read that at the first sign of nerve tingling to stop tinidazole. I don't know what you are taking.
Does it feel like the veins are doing spasms?
Posted by Judie (Member # 38323) on :
I also got peripheral neuropathy/nerve stuff in feet from tinidazole. Levaquin pushed the problem and made it even worse.
I'm so sorry you're going through this.
It was the Lyme doc who prescribed those drugs to me and then didn't take responsibility when I had an adverse drug reaction to them. The doc wanted to precribe even more of them. Ugh....
Sometimes you need a drug-literate doctor too.
Good luck. I do Chinese medicine now (boiling herbs). It's helped. You need to see a doctor of Chinese Medicine who specializes in herbs though. I wouldn't self-prescribe.
Posted by ukcarry (Member # 18147) on :
Yes, I have had these symptoms for quite a while and they worsened considerably last year. There has been quite an improvement since I started using B12 oils from Australia and the supplements for pyroluria (mainly B6 as P5P and zinc). My feet are also not as cold, which is wonderful.
Take care with B6 supplementation as it can be toxic for some, but it may be something to check out.
Posted by nursejed1 (Member # 25155) on :
Hi, Yes! I have severe neuropathy increasing over the years and have been undiagnosed first 10 years then told autoimmune etc... so really have not been treated well like most. I have lyme, bartonella, babesia, mycoplasma, parasites,and toxicity problems that worsen the leg pain. Its cold pain in toes up both legs so severe Im on oxycodone and still in horrible pain. But the good news is... I just found out have gene mutations In MTHFR,MAO,CBS,MTRR all t/t and many others t/- so am going to specialist in MTHFR mutations and there is a B12 correlation so I think the path is b12 and b vitamins and the methylation pathway. I bet this may be your issue too. Check out B12 deficiency on you tube its amazing so the build up of toxins given off by our bacteria overloads our system and we can no longer convert our needed nutrients. God Bless you. I hope you find help. I also have a cream called dermatran the pain doctor calls in a prescription for this combination cream for pain.Can look u dermatran health solutions. Parsley tincture in water is my detox friend!
Posted by sammy (Member # 13952) on :
I also have severe peripheral neuropathy. It impacts my feet and hands. I am starting to lose sensation in legs too. Hope to stop it with antibiotics.
My neuropathy is mainly numbness. I get severe pain with slight variations in cold or hot water, etc. Makes taking a shower difficult, can't really be hot, just warm and I have to slowly get my feet used to the water first.
I do also have the C677/ MTHFR gene. I take a form of methyl folate and methyl b12. I don't know about other gene mutations. This one test was done by my geneticist as part of my extensive work- up.
For Lyme, I have not taken Tindamax or Flagyl due to possibility of worsening my neuropathy. I take Alinia now, have been on plaquenil, and GSE in the past.
I'm sorry you have to deal with neuropathy symptoms like us too. Hope you feel better knowing you are not alone here.
Posted by onebeed (Member # 46620) on :
I have severe neuropathy. It started out in my feet and now is pretty much my whole body and feels like it is going down into the muscles. I have never taken Flagyl or Tinidazole or levaquin. I have been supplementing with B12 and have been taking B12 shots. I have taken Ceftin, Rifampin, and Zithromax and GSE. I still suffer. It is getting to the point where I feel disabled. I do not know what will make this feel better. It is getting worse.
Posted by Phoiph (Member # 41238) on :
I had severe, burning, stinging neuropathy over every square inch of my body for 8 years, which left me pacing 24/7, homebound, and incapacitated with total agony.
I am well and pain/med free now, thankfully...
It took consistent, daily mild (home) hyperbaric treatments over time, but it has all resolved.
You don't have to live like that...
Posted by Pocono Lyme (Member # 5939) on :
IVIG and then switched to subQ took away my neuropathy. Nice getting into the bath without feeling like I put my feet into a tub of hot coals. I stopped subq in April and still good.