NeuroTalk Support Groups - Small Fiber Neuropathy, Treatment options

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Small Fiber Neuropathy, Treatment options

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. 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.
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

Ralph, thinking back to the days when I tried LDN, I had ONE great day and never again. And then the bad day of constipation so I never went higher than .5mg...the yahoo LDN group kept pushing me to stick with it, stick with it and I did but it didn't help me from hip mess. Some people can do well I understand. I remember the optimal goal is 4.5mg dose...I NEVER got near there. That was back in 2009.

I swear by grape seed extract and a friend is off all meds after 15 yrs of neuropathy and being on grape seed ex...she's doing good. Statins were her downfall.

Here is what a new member here has started.

http://neurotalk.psychcentral.com/thread230775.html

The nerve damage I deal with is from hip replacement damage. I've gotten rid of burn but my whole thigh is numb 5 yrs post op. What I took for 3 months for my issue is Inosine and Sphingolin. I've talked about it here. Good luck and hope your mom can work with LDN.

Don't give up hope!

Hi and welcome!
I don't personally have experience with Lyme disease (or LDN), but other posters do. I'm sure they will jump in when they can, but in the meantime you can do a search under "Madisongrrl" and check out her posts on Lyme disease and/or search under Lyme. The same for low dose naltrexone. (The spelling has to be exact or you won't get a match.)

Quote:

Originally Posted by RalphD (Post 1194058)

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 (Post 1194058)

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.

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 (Post 1194058)

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

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/

I also have Lyme neuropathy. It is very excruciating. Debilitatingly so. I just started on LDN, very low dose to start, 1.5 mg, after Madisongrrl's suggestion. So far so good. Nothing miraculous yet, though. I think it will take some time to see a benefit. Start low and slow and build up. The drug I found that helped me the most was Rifampin, an antibiotic.

Quote:

Originally Posted by onebeed (Post 1194264)

How has it helped you? For example, my mom's neuropathy has spread throughout her entire body. So, is this an antibiotic that targets the underlying viral/bacterial infection? Or is this a drug that is best used in conjunction with LDN? I'm confused as to how an antibiotic would help her, given the stage of her SFN. It has been almost 6 years since her lyme, and the time frame of an antibiotic killing the lyme in its early stages before it became worse is over.

Quote:

Originally Posted by RalphD (Post 1194471)

How has it helped you? For example, my mom's neuropathy has spread throughout her entire body.

Quote:

Originally Posted by RalphD (Post 1194471)

So, is this an antibiotic that targets the underlying viral/bacterial infection? Or is this a drug that is best used in conjunction with LDN?

Yes, they are often prescribed in conjunction. Antibiotics to treat the underlying infection; LDN to help the immune system function and help with nervous system inflammation.

Quote:

Originally Posted by RalphD (Post 1194471)

I'm confused as to how an antibiotic would help her, given the stage of her SFN. It has been almost 6 years since her lyme, and the time frame of an antibiotic killing the lyme in its early stages before it became worse is over.;

If you don't treat the infection or the underlying cause of the neuropathy, then the neuropathy will not have an opportunity to heal. Antibiotics can help people with chronic Lyme. How much can they help? It seems each person is different. Some people get better, some people don't. Some people feel good on antibiotics, but they feel terrible when they stop. How much better can I get? I don't know since I'm at the beginning of my journey.

There have been 3 high level NIH studies that have looked at the topic of antibiotics and chronic Lyme. Two of the studies (Fallon and Krupp) did show that chronic Lyme patients received benefits from antibiotic treatment. The 3rd study (Klempner) did not, but it seems as if there are some problems and valid criticisms of this study. This is the study that the CDC seems to cling to. I guess the they didn't read the other 2.

Quote:

Originally Posted by madisongrrl (Post 1194592)

My backstory:

I had a deer tick bite in 2005 and symptoms of Lyme disease immediately followed that incident. My Lyme test was negative so I was never really properly treated. I continued to have strange symptoms over the years. It got worse in 2013 when I developed large fiber damage of my peroneal nerve - and no one could tell me why. Then I had a very fast onset of burning that started in Feb 2014, which spread all over my body by May 2014. I was pretty much living in a nightmare.

I was just diagnosed with Lyme a few weeks ago (via Neuroscience iSpot test - anything over 25 is positive; my result was 182, which is a strong positive). I was at the point where I couldn't wear shoes on my feet due to the burning pain and my hands always feel like they are burning and swelling. After starting antibiotics and LDN, my burning and sensory symptoms reduced significantly after 2 weeks. I've been getting a little better each day.

Yes, they are often prescribed in conjunction. Antibiotics to treat the underlying infection; LDN to help the immune system function and help with nervous system inflammation.

If you don't treat the infection or the underlying cause of the neuropathy, then the neuropathy will not have an opportunity to heal. Antibiotics can help people with chronic Lyme. How much can they help? It seems each person is different. Some people get better, some people don't. Some people feel good on antibiotics, but they feel terrible when they stop. How much better can I get? I don't know since I'm at the beginning of my journey.

There have been 3 high level NIH studies that have looked at the topic of antibiotics and chronic Lyme. Two of the studies (Fallon and Krupp) did show that chronic Lyme patients received benefits from antibiotic treatment. The 3rd study (Klempner) did not, but it seems as if there are some problems and valid criticisms of this study. This is the study that the CDC seems to cling to. I guess the they didn't read the other 2.

What is the specific name of the antibiotic that you take? Also, since my mom started taking LDN two days ago she is already feeling slight relief.

Quote:

Originally Posted by RalphD (Post 1194681)

What is the specific name of the antibiotic that you take?

I'm taking doxycycline and azithromycin right now....but that this will change.

Quote:

Originally Posted by RalphD (Post 1194681)

Also, since my mom started taking LDN two days ago she is already feeling slight relief.

That is great to hear. Best wishes to her.

Hey, Madisongrrl, how did the glutathione injection go?

Quote:

Originally Posted by madisongrrl (Post 1194776)

I'm taking doxycycline and azithromycin right now....but that this will change.

That is great to hear. Best wishes to her.