Nerve pain's an awful thing to go through.

These symptoms started out with ulnar nerve damage in the RIGHT arm. I did not have a physical event that would spur this on. I just woke up on August 9th with raw feeling, as if there is no skin on the tops of my fingers and the bottoms of my fingers were numb. I continue to have these symptoms, but Gabapentin stems the pain.

I now have ulnar nerve pain in the LEFT arm. This is a line of pain from the spinal chord over the shoulder, down the arm, under the elbow and to the wrist. I have evidence of ulnar nerve damage in my right arm in an EMG test. I have not had the left arm tested yet.

My neurologist claims I do not have any structural long term nerve damage yet, I can heal from this.

My rheumatologist claims I am suffering an auto immune disorder where the myelin sheath is being eaten away in the fingers but what is triggering this is "a mystery".

A second rheumatologist, I saw last week, claims I am "The Mystery Girl", but he does not believe in lyme disease or long term antibiotic treatment. I put him on the side of the insurance industry and safe haven politicos.

I suspect my Bartonella has resided in the spinal chord and is making its way down the ulnar nerve to cause this pain. I have never been in so much pain in all my life. (I have never given birth, so give me this one!)

I take Gabapentin for pain relief. It is a central nervous system drug, one wrung lower than Lyrica (popular Rx for fibromyalgia). Gabapentin is the only medication that allows me to live a more normal life, otherwise, I would not be able to touch anything due to the pain. I cannot wait to get off it but in efforts to ease off, I am forced back on.

I see an infectious disease specialist in Atlanta on Friday. Wish me luck. Stay tuned.

Thanks for your reply.

I was tested for all the co-infections twice but not by IGeneX. My LLMD just told me about another test called something like the Fry Smear. They look for the actual bacteria in your blood.

I am on Gabapentin now and that makes life liveable but I still have pain-can't go for a walk. Anybody try lidoderm patches?

Post edited by: wellinwisconsin, at: 11/12/2008 08:33

Was it MDL that did your testing?

There may be a hundred reasons why your tests weren't done at either IGeneX or MDL----- but those would be my first choice. Always.

(I do not have stock in either one. But one reason to prefer them is their tests are more often accepted by insurance companies.

I don't know if Fry's lab is.

Thanks for all your replies. I will add what I have found helpful for my nerve pain.

I use an electronic device called a ReBuilder used for curing neuropathy. I have been using it for 3 months and it has been great at taking away tingling. I used to get pins and needles up and down my legs and feet at night but that went away immediately after using the ReBuilder.

As for pain, I think it has helped a little. I have less twitching in my feet and that means less discomfort. It may take a lot longer to really help the pain. Also, I can't tolerate the electrodes on my feet directly. I have to put them on my lower back and can only do it every other day. As for my hands, I use it twice a day every day.

I know the ReBuilder is helping because I stopped using it this past week and wow did I notice a difference! I gradually got worse and worse until I was in major pain again and could barely walk. Even with 3600 mg of gabapentin (neurotin). I used it this morning and I have been gradually improving all day.

I also think my far infrared sauna was helping. I used to do it everyday and put my feet and hands close to the heaters for 10-15 mins. I plan to start doing it again but there just isn't enough time in the day.

The other thing I have found helpful is zinc. I discovered this by accident. But I suck on the oral Cold EEZe which is just zinc. I found that taking it that way works better for me than taking pills that you swallow. However, it does give me "metal mouth".

You can buy Cold EEZE on line in unflavored little tablets and I suck on 2 or three at a time. I do up to 16 a day. I checked with my doctor and he said it was fine as long as I don't exceed 260 mg a day. You can also get flavored Cold EEZE at the drugstore.

I hope sharing all this is helpful to someone!

Yes, I have had Lidoderm patches. With some of the pain, they did help...ususally had like 2-3 on my back, have even covered my arms and legs on really bad day...and they can be very helpful....

Post edited by: cmany, at: 11/12/2008 13:30