[Hope15]

Hi Glenn. Glenn I was curious about the theory on how your PN might have started. You mentioned post-infectious autoimmune molecular mimicry mechanisms. Can you explain this to me? Did you suffer from a bad infection before your PN? I know we share certain things in common, back and pelvic problems, also the fact that I like yourself suffered sudden onset body wide neuropathy. I don't know if there really is any connection, but ten months before I was stricken with neuropathy, I developed a horrendous long term bladder infection that I wasn't even aware of (It actually gave no symptoms). By the time it was discovered, it had traumatized some of my pelvic muscles even after I finally got it cleared up with antibiotics. I suffered from intense pelvic pain for months until it finally responded to physical therapy. Then, ten months after the initial start of that infection, I developed my first PN symptom down my left leg and it spread to my other leg, my back and then body wide in a course of six weeks. Of course I brought it up to the neurologists, but they shrugged it off. It is just strange that I had gone through all of those problems due to that infection and after that developed PN. Tell me, is ten months from the start of the infection (though it was eventually cleared up) to the first symptom of my PN much too long to connect the two possibly together??? Thanks Glenn...

[mrsD]

What drugs did you take? That could do it, too.

[Hope15]

Originally Posted by mrsD

What drugs did you take? That could do it, too.

It could, since I did take both Septra and then a short course of Cipro to clear it up and I know about PN and antibiotics. But I am really suspicious of the infection itself doing possible damage. It was so very intense and I started having physical problems such as extreme pelvic muscle pain before I even took any drugs at all. I want to know if there is any possibility that my nerves were traumatized by this infection and if the ten months in between the infection and the start of PN is too long to connect the two. I don't care what the neurologists told me, I'm looking into everything that happened to me within the year of getting PN, even if they dismissed it.

[mrsD]

Many people come here after a "flu" with PN symptoms. (viral)
We know that herpes zoster virus causes nerve pain.

There are bacteria that do create mimicry...but I don't think every bacteria has been studied.

Strep will cause central nervous symptom damage to neurons in PANDAs patients. (only certain ones get this--causing Tourette's and movement disorders).
Campylobacter will cause PN...it comes from eating uncooked chicken that is infected.

There are fish contaminations causing nerve damage...
http://www.cdc.gov/nceh/ciguatera/default.htm

But I don't think every possibility has been uncovered yet.

But we do know what Cipro is capable of causing.

[glenntaj]

--that ten months would be a long time after a known infection for an autoimmune molecular mimicry process to start. The antibiotic regimen might be a more likely culprit through direct toxic mechanisms. Many toxic neuropathies have acute and global onset.

That being said, there are some who seem to have evidence of molecular mimicry and don't even remember having an infection, or may have had a "cold" or something else they just dismiss as unimportant--and it turns out the "cold" was an Epstein Barr or other human herpes virus infection; a number of these have been implicated in acute onset neuropathies. The "cold" may not have even produced severe symptoms (not everyone with Epstein Barr winds up with mononucleosis), but it just so happens that whateve pathogen invaded had a shape that resembles some aspect of nerve, and the activated immune system, which works very much on shape--antibodies and macrophages 'smother' pathogens by fitting into protein cavities, like a key in a lock--cannot distinguish friend from foe.

Ciguatera, which Mrs. D mentions, is a double whammy--there are direct toxins produced and the organism also seems to have a shape that may be very close to some people's nerve components. It's likely there are other pathogens out there that do that too, and are as yet undocumented.

[Hope15]

Originally Posted by glenntaj

--that ten months would be a long time after a known infection for an autoimmune molecular mimicry process to start. The antibiotic regimen might be a more likely culprit through direct toxic mechanisms. Many toxic neuropathies have acute and global onset.

That being said, there are some who seem to have evidence of molecular mimicry and don't even remember having an infection, or may have had a "cold" or something else they just dismiss as unimportant--and it turns out the "cold" was an Epstein Barr or other human herpes virus infection; a number of these have been implicated in acute onset neuropathies. The "cold" may not have even produced severe symptoms (not everyone with Epstein Barr winds up with mononucleosis), but it just so happens that whateve pathogen invaded had a shape that resembles some aspect of nerve, and the activated immune system, which works very much on shape--antibodies and macrophages 'smother' pathogens by fitting into protein cavities, like a key in a lock--cannot distinguish friend from foe.

Ciguatera, which Mrs. D mentions, is a double whammy--there are direct toxins produced and the organism also seems to have a shape that may be very close to some people's nerve components. It's likely there are other pathogens out there that do that too, and are as yet undocumented.

Thank you Glenn. I guess I will never really know exactly. I'm trying to cover everything that happened to me in the last year before I got hit with PN. Yes, I thought about the Cipro, but I just don't know. I took it rarely before in my life with no problems, and I have even taken it once after getting PN with no issues. Whenever I have taken it, it was no more then five days. I always thought that nerve damage was permanent when taking antibiotics but I can honestly say that I have had some improvement in my PN, especially from the waist up. So ten months isn't too long between taking a short course of Cipro and getting PN? I even asked a pharmacist and they said they didn't think the Cipro played any part. Again, I just don't know. I will just keep on investatgating....thanks!



Edited to add, Glenn, it was this horrid infection that gave me pudendal neuroapthy which I suffered intense pain for months...