Small fiber neuropathy

Gabapentin (or Neurotin) is a popular drug for dealing with nerve issues. I take it for my nerve issues caused by Bartonella. There are people on this for many years that are fine. When you want to wean off it at some point you just titrate down.

Has it helped your pain? I just weaned off of it & my regular GP put me on cymbalta because it helps with neurons & anxiety (suffering from both) but for some reason my LLMD doesn't want me on cymbalta or Gabapentin. I wasn't sure if it being on the those meds impacted you're recovery from antibiotics (there is no drug interaction between them) I'm so new this. Just trying to navigate it all.

Hi MLL-NY - I have burning nerve pain from these infections and it is my worst symptom.

I recently tried the Gabapentin - my Lyme Literate Dr was fine with me taking it.
Although it didn't work for me so I stopped taking it. BUT if it had given me some relief - I would have stayed on it.

Nerve pain is very difficult to live with day in and day out.
If you can get some relief with it - good for you!

You can wean off it when you don't need it anymore.

...and welcome to our community. Hope these comments here have put your mind at ease .

MLL-NY said...
Hi all-

I just started treatment for Lyme last week. I've been suffering from a lot of burning sensations. I have burning on my fingers, thumbs, and bottom of my feet as well as my upper back. Plus burning that pops up & goes away. Before being diagnosed with Lyme, I was diagnosed as having small fiber neuropathy but the neurologist advised me to go to pain management & said I would never find the culprit. After much digging, I see Lyme can cause this. My question is, did anyone take any nereon medication while taking antibiotics? My LLMD wants me off gabbopentine & cymbalta, but isn't my pain going to increase off the meds? Any tips? Thanks!

I've gone through the same thing. Full body, rapid onset sfn.....Neurology recommended pain mgnt and I found out the cause was Lyme. I take a large dose of gabapentin and nortriptyline daily. Unless your LLMD can find a way to effectively manage your pain, it is going to be very difficult to stop taking nerve meds. Most LLMDs will put you on a nerve medicine to control pain so you can sleep effectively.

ShutterGy said...
I have a lot of nerve issues including small and large fiber neuropathy. My Drs have put me on IVIG. Completed my first round two and a half weeks ago, start the next round a week from tomorrow. Doses four days in a row every four weeks. The weekend after the first round, my wife and I were just beginning to stir before getting up. Her foot brushed the back of my calf and it tickled. It took a minute or two before I realized that it TICKLED; I mean I had not felt that sensation below my knees in five years.

Beyond that my nerve pain goes through short periods of seeming better, and then considerably worse. Also, I guess I have been one of the lucky ones because I had minimal joint pain; not anymore, pure agony at times. My Lyme Doc's are thrilled at such strong reactions after only one round of IVIG. Hopeful and somewhat fearful of what may come about next week.

I made a previous post on what dx my LLMD used to get this approved by my insurance. I hope this helps,
Ed

Hi Ed,

My name is Michael and I have read with great interest your situation regarding your Lyme disease and your steps in trying to get better. I am very heartened by the fact that you are feeling better with IVIG and I truly hope your progress continues.

Reading your diagnosis was like reading my diagnosis. I recently had a nerve biopsy that resulted in a diagnosis of SFN. Based on my symptoms, my primary care doctor concluded that I had non length dependent SFN. Additionally, my blood tests came back showing high antiganlioside antibodies. Therefore, my doctor concluded that I had an autoimmune disorder.

Like others suffering from SFN, I have tried a number of medicines to decrease the all over body pain. I have been put on Neurontin, Lyrica, SSRIs, Tricyclics and pain medication all with no success. I have also gone the dietary route with little success. I have discussed IVIG with my PCP but he is not really familiar with this treatment and doesn't know a neurologist to recommend. (As a result of a lot of research, I was the one who requested a nerve biopsy and the blood tests. To his credit he has been very receptive and has tried to help me the best he can.)

I'm at a point now where I would really like to see a knowledgeable neurologist who has the understanding to properly prescribe IVIG. It seems that you have found such a doctor. If you would be willing to provide the name of your doctor I would be very appreciative.

Thank you in advance and continued success.

Michael

Michael, please activate your email. We are not supposed to put the names of Dr.s on the board. My route to getting the prescription was circuitous. My Lyme Dr at Spaulding hospital in Boston prescribed it in conjunction with my Neurologist. But, I live in NH and they do not have privileges at my local hospital. I was fortunate enough to have my Hematologist prescribe the med; her office was very diligent in working with my insurance company to gain approval.

It is my understanding that Hematologists and Oncologists are more likely to prescribe and understand IVIG than even Neurologists, but I am not sure of that.

Good Luck,
Ed