I am 41 years old and have had burning in my feet since I was 36. I have a long, long history of lyme disease and co-infections but most of my symptoms have been far diminished. I have been tested for:

MS
Autoimmune neuropathy
Diabetes
Thryroid disorders (have hoshimoto antibodies but no symptoms adhormone evels are good)
Celiac
Lesions of the brain and spinal cord
Heriditary neuropathy
Sjorens
CIDP
Food allergies
autoimmune markers
B defficiency (trying to obtain number from OCT blood draw but prior to that it was 408)

ALL NEGATIVE.

The pain and the disease are progressing. Within the first few months of this starting in 2009,the pain was so unbelievable, I had to go on meds. One day my feet were fine, the next I had neuropathy. I can tolerate nuerontin the best so I've stayed on it and ramped up to 3600 over time. I stayed at 3100 for alomst 2 years, until 3 months ago, when everything exploded and began rising up my legs. The pain is now so bad, I can't put blankets on, or it triggers worsening pain. My legs sting, burn and pinch. My feets burn, ache and feel stiff. I have body wide tingling and burning that just terrifies me. This WHOLE disease terrfies me!

I was diagnosed with lyme disease when I was 26 and spent several years of my life on IV antibiotics along with enough oral abx to literally kill several horses. However, I have not been on any of the antibiotics known to cause PN. In 2009 when this neuropathy started, my infectious disease doc IMMEDIATELY put me back on IVantibiotics (Rocephin) to try and stop the neuropathy. It didn't work. So I went to another guy who put me on another 6 months course of IV drugs- some so aggressive, I was bedbound for weeks on end. Again, it didn't work (still needed the neurontin). I remained on oral antibiotics (which make you so so ill, so much so you can' really function and can be worse then lyme itself), but i hadn't needed to ramp up the neurontin until now----4 months into an IVIG program. HUH?!

I went on the IVIG per a Yale neuro who studies lyme and what HE believes is no longer lyme this far in, but an autoimmune condition that lyme morphs into after it's been in the body for years. This is WIDELY debated and my lyme guy strongly disagrees and believes if you still have symptoms, you still have lyme (also quick to say ANY symptom you feel is lyme!!). Not sure which is right but together, we all decided it was worth a shot since the neuropathy wasnt relenting. I have been on it now since Oct of 2012 with ZERO benefit and only worsening problems.


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To start IVIG, I had to agree to stay off all antibiotics (had been off for about 6 mos already). Though we never made any real rogress WITH the antibiotics. I got on very potent stuff only ONE month after the PN started, I feel like if this WERE lyme related, the 3 years of lyme drugs that followed, should have done the trick!! But, this is the LONGEST I have ever been off antibiotics and now im in severe pain.

Could the IVIG actually make PN WORSE?

Can treating as if you have a B problem,without a B problem, still be successful?

Where the heck do you turn when you've exhausted what feels like EVERYTHING yet you are suddenly progressing? Ive been battling something or another since I was 26 years old. I'm a fighter. I can't believe there is NO way to help this!!!

Can ANYONE give me some insight or direction PLEASE?

Kate

I'll tell you what I think... but this is not a diagnosis by any means...

Antibiotics work by affecting either the cell wall of the infectious organism, so it dies, or by attacking the DNA of the organism.
With time they will do this to you too.

If your dorsal root ganglia along the spine are damaged by the Lyme process or the drugs, that is a serious thing. Some people lack the genes to make the nerve growth factors to repair this.

There is a special MRI test that will show dorsal root damage. Have you had it?

This is the link to that thread:
http://neurotalk.psychcentral.com/thread147771.html

The fact that gabapentin works for you, hints at this because that is the level that this drug often works at.

Supplements to target mitochondrial damage are acetyl carnitine,
lipoic acid, and CoQ-10. Ribose powder (a sugar) also may help
with normalizing ATP production in the mitochondria.
Magnesium is important too, as it functions at the mitochondrial membrane.

I have these supplements in the supplement thread:
http://neurotalk.psychcentral.com/thread121683.html

If you haven't read the mito threads yet, I'd search them
"mitochondria" because this is where the damage can occur to nerves.

In your case things are really complex. Could be that a bunch of factors co-exist given your Lyme infection which impacts nerves, and the antibiotics which also carry their own risks with long term use.

For symptom relief of your feet, have you tried Biofreeze gel?
This really works for me and some other posters here too. The gel carries the menthol thru the skin quickly, and the menthol then stimulates cold receptors to override perception of the heat sensors which seem to be the most affected by PN.
Biofreeze is now available at low prices on Amazon, and iherb.
I've used it for years now when my feet flare up at night. It never fails me. I think it is worth a try... as it is under 10 dollars.
A little goes a long way. I learned this trick from physical therapy I had several years ago for a tendon injury. My therapist mixed Biofreeze 1/2 and 1/2 with the ultrasound lubricant for my Ultrasound treatments, which they ramped up in power.

Welcome to the forum. I know how it feels to not have a diagnosis or clear path to follow. Mrs. D is extremely knowledgable about supplementation, and I see she has weighed in. I am trying the Biofreeze and also the Morton's Epsom lotion, as I have quite a bit of sensory pain, especially in my left foot.

This is a great place to find people who can relate to chronic pain.

A detective is important! Mrs. D is wonderful and we all help each other here. Welcome!

I have rarely found reg. doctors to be detectives or scientists. Most only know what they learn in school. Just a few hours on nutrition and supplements. Sad. So, integrative MD's are important. They know how to safely help and they know how to use blood tests, diet and supplements. You might try to find one and bring the information you learn here.

I have not had this test and have already sent an email to my neurologist for information on where to have it done. Thank you. If it does prove to be the cause, is there anything one can do (other then trying supplements)?

My feet (all my pain is symmetrical) burn 24-7 when the Neurontin isn't working. Now, it's my legs and random places all over my body, including my mouth. The neuro stated that when it travels or is spotty, it's likely autoimmune. Given the aggressiveness and destruction lyme does to one's body it wouldn't surprise me if some of my issues were autoimmune and some were still lyme or other factors (that we can't find). HOWEVER, if the PN portion of what I'm dealing with was autoimmune, the IVIG should be helping.

I do work with an integrative doctor already but he's very lyme disease focused (for the most part). He's had me do chelation, lyme therapy, B vitamins, elimination diets, etc. As I mentioned- we've been aggressively attacking this neuropathy for 4+ years. He most recently mentioned taking silver- which I won't do.

I feel like we are MISSING something. I don't know why, but it's just the feeling I've had from day one.

I did get my B labs back and I don't understand the results. It says the normal range is "243-894" and I'm 1799. That is VERY surprising considering I hadn't started vitamin B treatments yet!

The integrative doctor wants me to go back on the antibiotics(Bicillin injections and Septra) to see if it helps calm this down but It feels like such a vicious circle. If I beef up all my B's and mito support, can I protect myself form further damage from the antibiotics?

THANK YOU so much. I truly don't know where to turn and NEVER thought I'd still be dealing with this 4 years later.

Kate

B12 can get elevated from what is called a dysbiosis in the bowel.

When certain organisms start to proliferate, sometimes after antibiotic treatments (usually oral), those organisms can make B12 and you absorb it that way.
http://www.cnelm.co.uk/Nutprac/vol9i...LevsB12.GM.pdf

There are other disease states that raise cobalamin when no supplements are taken:
http://www.ncbi.nlm.nih.gov/pubmed/14636871

http://www.ncbi.nlm.nih.gov/pubmed/17981373

I do hope for your sake that the resurgence of your symptoms are not related to a malignancy.... this type of PN is called paraneoplastic.

Good you have a integrative MD. Just like other doctors, they all have different ideas. Maybe you could find another if you need to. Sometimes it takes finding the right one...I am sorry you are dealing with all of this. Glad you found this forum.

A malignancy? And how does one get tested for a random cancer? Ugh

I always have "dysbiosis" btw. Always. So, that might make sense. I should also note that every. single, neuro test I've done has come back negative. All in office tests physical tests (reflexes, gait, etc) are always negative as well. **Though my skin biopsy shows the nerves diminishing, but not yet in the abnormal range. I suspect if I continue down this path, it will be my first confirmation of something actually happening.

Regarding cancer- I have to imagine there would be something in my bi-weekl blood draws that would raise a red flag or two. When on IVIG you have to have constant monitoring.

The other thing that's perplexing is the B. I KNOW I was getting relief from it. There was NO doubt it was putting out the fires until 2 days ago. If B isn't an "issue" I don't understand why it would provide relief at all.

Kate

Thank you so much for your compassion. I hope you are healing from your painful journey as well..