you're welcome! yep it's quite a learning curve. that's what i like most about having a crappy dx. made me learn a LOT.
with pg/ml for b12 and that 30-100 range for 25(OH)d3 looks like units for that are ng/mL. 50 ng/mL is solid, but it wouldn't be if you were speaking nmol/L, hence the question
can i assume that 50K d3 was once a week? 2000 d3 daily will be okay but you will want to add some other things for it to work with. a really great pharmacist told me i had to take more magnesium with my d3. i said i was already taking that and he said it's not enough, and you're not timing it right. he said take half of you mag at the same time as d3, and half on its own separately. i was really suffering at the time and in a couple days things were really turning around. it was amazing.
i took d3 for a while before getting a test but when i finally did it, my level was 28 ng/ml. i got it up to 50 by megadosing and then 4000IU per day. there were studies suggesting this was a safe dose but no studies exceed 6 mo duration and they didn't look at any cofactors besides calcium (because hypercalcemia is the main thing on the radar as an undesirable side effect of d3 excess). this gap in the science still exists. anyway i did my d3 thing for ages with a low dose multimineral in the picture but it ended up not being enough. i never felt any different taking d3. i just felt better knowing it was in a more optimal part of the range. eventually i learned i didn't even need d3 megadoses at all if my mineral cofactors were in good shape.
thanks for sending the list of tests. how did iron and TIBC come out? i'm assuming b6 was not high? did the metabolic panel include all of these components? https://labtestsonline.org/understandin ... /tab/test/
is there hemoglobin in there anywhere? klenner suggests Hg 13g minimum.
good to hear your EMG and NVT were normal.
with b12, for ages i have been going with a old recommendation in the literature suggesting min 500 pg/ml for serum b12. it was published in an academic journal, not what you'd call high quality science or anything, but it was a starting point. i aim for 500 in pmol/ml which is going above and beyond (about 680 in pg/ml), but i'm ok with that. i do think it's possible for your 233 level to be associated with problems. it can vary day to day. when i was vegan i didn't approach blood tests properly and i would take b12 before they tested, always coming back with levels in the low 200s. when things started to go wrong, i ran a clean test out of curiosity, and they could not detect any b12 in my system. good for you to be at 790 now.
re b12 vs ms lesions, i'll have to go back and look at the transverse images on my mri disk, will be interesting to check out. my neuro certainly didn't (or if he did, he didn't clarify for me). he didn't like me asking questions. and asked me if i was a fan of grey's anatomy. um, what? lol
i had mma and hcy tested in 2006 but before i even got the results, i had read enough to know that for me at least, those would not turn out to be a problem, and they weren't.
adding a daily vitamins was a good call. it will help top up where food falls short in a status quo situation for a healthy individual. what it will not do though, is help top up deficits associated with illness
between now and november, one thing you can do on your own is start tracking your food and fluids, meds and supplements. just start keeping a diary and after a week or two you can go back and look at how you compare to recommended daily amounts for nutrients that are suspect in ms. besides b12 and iron, one big one to look into as a vegan is zinc. i was deficient first time i asked for that test, not just low normal. personally, zinc was one i really could feel take effect when i fixed it.
i'm going to circle back to the klenner protocol, because you mention taking b12 only and not feeling better. i mentioned before i eventually took b12 without experiencing the same recovery, and that then i did klenner and did feel much better. tracking your own intakes would be a good start but if you feel more ambitious, you could see if any elements of the klenner protocol sound like they would make sense for you.
when i did my version of the klenner protocol, i bought all the components of the b complex individually so that i could get a custom amount of each through the day. if i had to do this protocol again now, i would probably simplify the whole B-vit element down to a couple of B50 complex caplets before each meal and bed time.
warning. this is a therapeutic thing to be done short term. for example, it says take 400mg total of b6 per day. long term, you don't want to get more than 100mg per day of B6. high b6 is trouble; i suspect it's in your set of tests for good reason.
what i did klenner-wise looked like this:
-High protein diet with two to three eggs for breakfast
-Protocol suggests lecithin, instead of pills i bought granules and worked them into meals. i remember sprinkling them on fruit in the morning for example. it wasnt a lasting habit but they were ok.
before all three meals and bed
-vit B1 (thiamine) 300mg
-vit B2 (riboflavin) 25mg
-vit B3 (niacin) 100mg *
-vit B5 (pantothenic acid) 200mg
-vit B6 (pyridoxine) 100mg
-vit B9 **
-vit C 2000mg
-vit D ***
-vit E 800 IU ****
once a day, midday
-vit B12 (cobalamin) 1000mcg (sublingual strip)
* i did niacinamide sometimes, straight niacin other times.
klenner comments re niacin "The lack of constant flushing in Multiple Sclerosis is disappointing but not hopeless" note that this protocol omits beneficial fatty acids like omega 3s. later research determined that failure to elicit a flush reaction from a niacin dose can be due to polyunsaturated fatty acid (PUFA) deficit. i get a solid flush reaction from niacin, so it makes me feel good about my fatty acid status at least
** this protocol omits B9 (folic acid). i havent looked into the folate side of the issue much. the only problem i have ever had with it is excess.
*** this protocol omits vit d3. it was developed before quite as much had been published about d3.
**** protocol being old, it recommends a form of vit E that i wouldn't personally use now - find E8complex with 8 mixed natural ratio tocopherols (4) and tocotrienols(4). not knowing better, i used regular vit E at the time and was fine. i just wouldn't recommend it for long term use.
for the rest of it, the details were over my head 10 yrs ago and i just added a multimineral. now i would take more care. for example:
item 12 in the protocol is magnesium and 15 is glycine. at this point i would just say 100mg per day magnesium glycinate. (which didn't exist as an option when the protocol was written).
the zinc is important too. 10mg zinc citrate would be a good start. you want 2% copper in any zinc supplement. it's not a good idea to supplement zinc alone if iron is also low, and vice versa. important for vegans in particular.
final note, this is therapeutic first aid style supplementing. not to be done long term. i felt it kick in on the third day. after that i was able to dial things back a bit.
well that is that! i should be writing other stuff, better get at it ciao for now