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Originally Posted by RalphD
Hi, my mother is diagnosed with small fiber neuropathy. My mother 6 years ago was bit by a tick and because of countless misdiagnosis in the process of targeting the lime disease, it eventually turned into autoimmune- small fiber neuropathy.
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Hi Ralph,
I'm sorry to hear about your mom's misdiagnosis. This is so darn common. I have Lyme neuropathy (small and large fiber) as well and I also went though a long period of misdiagnosis. Neuropathy pain from Lyme is not rare. I generally don't like Lyme message boards because I feel the people on them aren't as medically educated as the people on this neuropathy forum. But the pain that those people are describing as "Lyme pain" or "burning from Lyme" is indeed neuropathy.....many just haven't come to that conclusion yet.
Quote:
Originally Posted by RalphD
She has taken all the drugs, gababentin, lyrica, cymbalta, morphine, vicodin, percocets, and IVIG etc. The list goes on. She is beginning to lose hope, she won't admit it but I can see it in her eyes. The pain, sadness it truly kills me to see her like this. She is the sweetest women on this earth and she doesn't deserve anything like this...absolutely no one does. I'm reaching out for help and good faith from anyone who has experienced any significant results from any drugs, therapies, holistic treatments etc.
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If you look in my tagline below, those are the drugs and supplements that I'm taking. Antibiotics and LDN have probably helped me the most so far. This disease painful; it is a trial and error endeavor to see what treatments are can take an edge off the pain.
Quote:
Originally Posted by RalphD
Also, I have done extensive research on a drug called LDN ( low dose nalextrone) and we are getting it tomorrow and apparently it has gotten great feedback in terms of pain relief. I was also wondering if anyone has had any experience with LDN as well. Any help will be greatly appreciated.
Best,
Ralph
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LDN is a good drug to trial for your mom, given the etiology of her SFN. LDN has a low side effect profile, it reduces inflammation, and will help your mom's immune system to function better. I can explain further if you want to know more. Many Lyme patients take LDN and have found some success with it.
Here is a link to a paper that explains the mechanism of action:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3962576/