Here is my story:
Labs:
I had a longstanding carnitine deficiency, as bad as this:
total carnitine: 16 µmol/L (29-70)
free carnitine: 6 µmol/L (18-48)
acylcarnitines: 10 µmol/L (7-26)
acylcarnitines/free carnitine ratio: 1.67 mol:mol (<0.50)
I repeated these measurements many times and had always almost exactly the same results. Except one time when I had a mild flu. Then my values plummeted even further:
total carnitine: 10 µmol/L (29-70)
free carnitine: 8 µmol/L (18-48)
acylcarnitines: 2 µmol/L (7-26)
acylcarnitines/free carnitine ratio: 0.25 mol:mol (<0.50)
A urinary carnitine test showed almost zero loss into urine. That is, kidneys problems (e.g. an OCTN2-defect) are not to be blamed for my low values.
Supplementation - failures, dosages and finally success:
First, I tried everything on earth to improve my carnitine in simple ways ... but all the super tasty carnitine-rich meats cause digestion probs in me, just like oral supplements do (the best are: kangaroo, beef, lamb, ... - I offer to send tables of carnitine contents and I would like to get your papers, books, websites on carnitine contents). So I tried transdermal carnitine. I had many symptomatic changes such as faster thinking, better appetite, better tolerance for food, and better memory. But I think meanwhile they were probably all caused by transdermal niacin I started around a simillar time, which did increase my previously deficient B3 levels. Only carnitine tartrate has
research (I offer to send the fulltext in PM) that it could absorb through the skin, but inspite of using a PhD dermatologist's PEG absorption enhancers, and inspite of increasing dosage to several grams, it did not increase my serum carnitine levels. But could it be that it actually worked a bit and the little carnitine that maybe absorbed transdermally simply got used up and caused these benefits? Finally, I tried carnitine injections. A doctor was willing to teach me how to selfinject and prescribed me everything from injectable carnitine to needles. So I am now a "medically trained carnitine drug-addict" needling myself every day, yeah
. I hoped for a wonder, but nope: I felt nothing at 100 mg/day. I increased the dosage. At 600 mg/day I had an unsuspected change: within a few days, I could clearly feel how my colonic peristalsis started working more intensely. My stool passage time (mouth to toilet) shortened. There are several publications that carnitine deficiency causes gastro dysmotility and carnitine supplementation improves it:
ref1 ref2 ref3.
But while improving peristalsis, at the same time, I started waking up at night with my digestion actively working. This is so annoying! And it does not at all seem to lessen with time, in fact it even gets worse!!
Please help if you have any ideas!!! These peristalsis-induced sleeping probs just kill me. I do not want to give up carnitine or reduce dosage because this is my big big hope to cure my severe small fiber neuropathy that causes my POTS. There are several papers that small fiber neuropathies of varioussest etiologies can be cured using carnitine, for example:
research1.
research2. While in me the etiology of my small fiber problems is not known, the POTS they cause (as diagnosed by the country's best POTS specialist and as described for example in the "neuropathic POTS" section
here) keeps me in bed almost all day. And last but not least, could these huge IV dosages cause side effects over time, for example because of the extreme fluctuations? (of course the doctor has no idea)
