@keenly good to find someone to share the problem with! In fact, what you describe is the closest from all people who have commented. The closest to my worst experience. it also came very suddenly: within a 3 hours of sleep, I developed a strong and lasting polyneuropathy in the feet:
-
less feeling (sometimes almost none in the ball of the feet)
-
tingling
- stinging pains
I also think that this is "very scary", but earned only dumb and passive looks from doctors. One neurologist said she knows about antibodies that cause such rapid things. Nicely tested me for a ton of antibodies, all negative. (if you are interested I can post you the test list)
While several vitamins cause some neuropathy in me (b6, D, B3), this sudden and big change was caused in the following manner:
I took a large dose of B1 (75mg). The next day after that I ate fish. After meals I always need to nap. slept 3 hours and woke up with neuropathy. I really wanted to know, so I ate the same fish (a can of sardines and a can of mackerel) a few days later. Again a sudden worsening in neuropathy. Now, the thing is tlat the exact same fish meal I ate literally a hundred times before. So it can not be the fish alone. And I made a big pause after this neuropathy event, then reintroduced fish very carefully, and no problem at all. So I conclude that there must have been two factors, probably the vitamin B1 overdose and the fish.
And there was already a mild neuropathy before.
My best guess as to the mechanism is this:
I have quite some indications that all my not yet resolved issues in general could be caused by mycobacterium paratuberculosis. This bug is involved in Crohn's, but not only,, and a lot of people get neuropathy. These beasts live in intracellular biofilms in the gut. Omega 3 oils that are plentiful in exactly these fishes are effective against biofilms. Also fish have effective antimicrobial chemicals which prevent them from getting rotten inspite of being in water all the time. Add to that that B1 contains a lot of sulfur and such compounds have been shown to increase autoimmunity in some cases.
Add to this that mycobacteria have a heat shock protein that is heavily suspected to cause autoimmunity.
So in sum, maybe it is sthg like this:
The B1 potentiated some not yet found antibodies, the fish killed a lot of mycobacteria, this activated that heat shock protein, all this together caused my neuropathy.
I can support all the above statements by research, let me know if anything should be of interest. Here for example research on the mycobacterium heat shock protein probably causing autoimmunity:
M. paratuberculosis Heat Shock Protein 65 and Human Diseases: Bridging Infection and Autoimmunity
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3465878/
So in sum, there is research but lack of lab results proving any causation in me. Well, in fact there is one finding that is thought to influence neuropathy: I have an elevated chronic activation of the alternative pathway (proven by multiple measurements over years of either
- a diminished c3c, or
- a diminished c3 and simultaneously a normal c4.
Both prove activation of the alternative pathway of complement.)
If you have any.further guesses of what may be causes in you or me, or you have lab values, or research, let me know! I like being contradicted or read alternative explanations! Hope to hear from you soon.