Idiopathic no more - it's Lyme and possibly lead
 

Just wanted to post this for all those on this forum who have idiopathic small fiber neuropathy. Big thanks to those who suggested getting a Lyme disease test, most especially LizaJane. I got tested and found out I do have Lyme disease and Anaplasmosis - a tick borne co infection. Read LizaJane's postings on how to get properly tested. Don't go to your GP like I did. He refused to sign the form to get the test. Found a good LLMD doctor and got tested properly, and now am being treated. My GP, neurologist, cardiologist, opthamologist never breathed the word "Lyme" to me. I did not even know Lyme can cause neuropathy. I find this shocking. Even more shocking is how little the medical community knows about Lyme. I have probably had Lyme for at least 20 years and had absolutely no idea. It was causing serious heart rhythm problems and visual disturbances. My neurologist never even attempted to find out what was causing the neuropathy. Both my neurologist and my GP had said that I would be in pain for the rest of my life and I was idiopathic and that was that.

My LLMD also had me tested for heavy metals. I was shocked to find I had high levels of lead, which can also be a cause of peripheral neuropathy. I tested the dishes I had inherited from my dear sweet mother in law and found them to contain lead! I had no idea! I had been microwaving on them and filling my food with leached lead for years. These particular dishes were the Currier & Ives blue patterned dishes from the 60s and 70s.

So, if you have been diagnosed with idiopathic SFN, keep looking. I don't believe this happens to us for no reason.

Also, don't let people drug-shame you if you feel you need drugs to help you deal with the pain. Some people make others feel bad about needing things like Lyrica or Cymbalta. Other people can have no idea how badly it hurts and some of us really need something to help take the edge off so don't feel bad if you need the help.

I am very grateful to the people on this forum. If it wasn't for this forum, I would have no idea that I had Lyme disease.

That's great news!!!!

I'm currently being evaluated for tick diseases right now. The doctor told me that they see lots of people with SFN, facial, eye and throat pain etc. So we will see how my tests results turn out.

Have you tried Low Dose Naltrexone? I've been on it for a little while now, and it's already helped take the edge off my pain. I have not been able to wear shoes while at work for some time (I work at a computed and have to slip them off due to all the burning). Last week, I was able to wear my shoes for a full work day.

Well done onebeed.

Your refusal to accept the medical profession inadequacies and determination to keep searching are encouragement to us all.

Thanks for posting of your diagnosis and I hope you can now get some progression on treatment.

Let us know how you get on.

Are you going to have treatment for the lyme? It's quite extensive, isn't it, if not done immediately after a tick bite?

Madisongrrl - Are you being evaluated my a Lyme literate doctor? Do you know the kinds of tests they did? The standard tests aren't very accurate. If your tests come back negative, you may still have Lyme. Consider a test from one of the tick specialist labs like Igenex, Stony Brook, or AdvancedLabs. Or at least ask your doctor to run a CD57 test through LabCorp. Insurance will usually cover the CD57 and it gives a good indication of whether or not you have Lyme. If your number is over 200, you are normal.

I have not heard of Naltrexone. I will have to check it out. I also have a real problem wearing shoes. They are incredibly painful. I have had to give up socks.

Northerngal - Yes, I am being treated for Lyme and Co-infections. There a lot of different antibiotics to cycle through that hit all the different forms that Lyme takes. It will be a long process. I have also been taking antibiotic drops for my eyes. My vision has improved already and the colors are brighter, although I did still get an episode of blindness that lasted about an hour on Saturday. I did not realize how much my eyes were being affected.

My doctor is well versed in Lyme, co-infections, and functional medicine etc. She is running several different tests on me - none of which are standard. I think she very much ascribes to a Dr. Horowitz type of medical approach.

If you are an outdoors person in Wisconsin, it would not be unusual to pull a handful of ticks off of yourself every single week. I used to race mountain bikes, so camping and ticks came with the territory. Ten years ago I was bitten by a deer tick in northern Wisconsin and had Lyme symptoms a few weeks later. I had 4 negative elisa tests from my under educated HMO and thus never received proper treatment. So I've been on the negative Lyme test merry-go-around before...

This Lyme doctor put me on low dose naltrexone to help my immune system function properly. There are 2 known mechanisms for this drug - 1. it promotes regulatory T-cell function, which serves to keep your immune system balanced and 2. it regulates CNS inflammation by blocking receptors on your white blood cells that cause pain and inflammation. It seems to be taking an edge off the pain so hopefully we can figure out if tick-borne illness is driving my immune system dysfunction, which is driving the body-wide neuropathy symptoms.

So the nurse who did my patient intake at the Lyme doctors's office has a daughter that had persistent Lyme and developed SFN from it. Her poor daughter is only 20 and has to wear a cooling vest outside if it's 75 degrees or warmer. I just about fell out of my chair when I heard that.

I'm happy that you were able to find a cause for your symptoms. Please keep us all updated with your treatment and hopefully your improvement! :)

madisongrrl, I'm glad you're in good hands. While I am not happy about having Lyme, at least I can start treating it now that I know.