Hi DavidX: (Your mailbox was full, but thought this might relate to others with burning skin?)
Have noticed your posts about neuropathy. I very clearly deal with sensory-only neuropathy - I have Lyme/Bart clinical dx.
I have NOT had a nerve biopsy but think I already know the answer. One reason I strongly believe my problems are small fiber is how I get INSTANT relief from putting cool air/water on the burning areas. Figure this soothes these tiny nerves right below the skin. Likewise, pain without minutes of skin to warm contact, warm probably irritating nerves.
I too would HOPE with all my heart these nerves can at least partially re-pair, re-grow, etc, esp. if removing the cause (be it Lyme, Bart, Gluten-insentivity etc).
Have you had a biopsy done? Any idea what it would cost out of pocket?
Thanks for sharing any experinces, MBB3
PS: I would hope absolutely worst, last-case scenario that there is or will be adequate pain relief for this type of problem? Intrathecal pain pump, spinal cord stimulation or ?
Posted by jjeennnniiee (Member # 7964) on :
Hi MBB3,
I haven't had a biopsy to officially diagnose me with it, but after researching it alot, I know I have it too.
I've had it for many years and it continues to be one of my most bothersome symptoms, yet I have no idea how to counteract or repair it.
Mine mainly causes weakness, which is especially noticeable in my arms, but I also have numb, tingly, hot, cold, and irritable like (if that makes any sense) feelings too.
I sure hope and pray it eventually goes away with lyme and coinfection treatments though!
How many other people here have or have had it?
Has your's partially or completely resolved?
If so, what did you do?
If not, what you do for relief, if anything?
Are there any medications or supplements you can take to counteract or repair it?
If so, what are they?
I tend to believe it's permanent damage, which there's not much, if anything, you can do about, but I could be wrong.
I'd sure like to know for sure though!
Love, Light, & Health, Jennie
Posted by MBB3 (Member # 13459) on :
Hello,
The way I understand is that small fiber nerves are umyleniated, meaning they do NOT have myelin or the insulin sheath that larger nerves have.
Under the right circumstance, I would hope they can regeneate? They must be microscopic being immediately under the skin and then connecting to larger nerves that eventually go to the brain.
It's widely believe that B-12 (methylcobalamin) form will repair myelin. Alpha Lipoic Acid, Fat soluble B-1 (benfotiamine) are also considered usefull.
But can ANYONE answer whether or not the small fibers can improve?
Thanks, MBB3
Posted by davidx (Member # 8326) on :
MBB-
I didnt even know my mailbox was full...I guess I need to clean it out!
Here is my best non-medical explanation of things:
The test for small nerve fiber density is a very painless skin (not nerve) biopsy that is taken from 2 places on your leg (upper and lower leg). It is not a nerve biopsy but is used to analyze the small nerve fibers.
After they take the skin, it is then analyzed to determine the average small nerve fiber density. There is a range as to what is normal and a person who has small nerve fiber neuropathy would show a number below the 5% level (meaning about 95% of the population would have a density number above that level).
Unlike large nerve fibers, they are not myelinated.
I have read cases where the nerve fibers have regenerated (at a slow rate) once the cause was found and treated (celiac for example) but unfortunately in other cases it does not get better...
I have had the skin biopsies done a couple times over a period of time and it continues to show a worsening of the nerve fiber density for me. I'm currently working with my llmd and a neurologist to try to figure this out.
I don't know what the cost is but hopefully your insurance will cover it. If for no other reason then it can show, objectively, any trends in the disease.
I have asked the neurologist I am seeing if the small nerve fibers can repair and he said that in some cases they can...but like everything and everyone else, there is no guarantee.
Feel free to PM me if you would like...I hope there is room in my mailbox (give me 5 minutes to clean some of it out!).
-David
Posted by davidx (Member # 8326) on :
MBB-
I didnt even know my mailbox was full...I guess I need to clean it out!
Here is my best non-medical explanation of things:
The test for small nerve fiber density is a very painless skin (not nerve) biopsy that is taken from 2 places on your leg (upper and lower leg). It is not a nerve biopsy but is used to analyze the small nerve fibers.
After they take the skin, it is then analyzed to determine the average small nerve fiber density. There is a range as to what is normal and a person who has small nerve fiber neuropathy would show a number below the 5% level (meaning about 95% of the population would have a density number above that level).
Unlike large nerve fibers, they are not myelinated.
I have read cases where the nerve fibers have regenerated (at a slow rate) once the cause was found and treated (celiac for example) but unfortunately in other cases it does not get better...
I have had the skin biopsies done a couple times over a period of time and it continues to show a worsening of the nerve fiber density for me. I'm currently working with my llmd and a neurologist to try to figure this out.
I don't know what the cost is but hopefully your insurance will cover it. If for no other reason then it can show, objectively, any trends in the disease.
I have asked the neurologist I am seeing if the small nerve fibers can repair and he said that in some cases they can...but like everything and everyone else, there is no guarantee.
Feel free to PM me if you would like...I hope there is room in my mailbox (give me 5 minutes to clean some of it out!).
-David
Posted by JKMMC09 (Member # 15795) on :
I have tested positive for Lyme, Babesia and Bartonella.
My Nero. has performed Nerve biopsy's, EMG's and other Nerve conduction studies that confirm I have I have both small and large fiber Neuropathies with Demeylinating features. CIDP (the Chronic component of Guillian Barre Syndrome) is the diagnosis I have been given for that aspect of the disease, it is autoimmune.
I have stabbing, burning, tingling, and a general feeling of acid being poured onto my legs (worst), but also my hands, arms and face. I've tried all of the symptom control meds. and even IVIG treatments to no avail.
I hope that you find an answer to what is causing your pain, and a solution for it too!