This Is MS Multiple Sclerosis Community: Knowledge & Support

hey thanks nick, yes we here do know about the lag time from dose to serum max. thanks for the heads up in this particular case.

my doc wants me to test at the very end of the high dose anyway, and again two weeks after i switch to the maintenance dose. she does not know that the values can be offset by so much time. i actually forgot to mention that fact, when i asked for the D prescription and she was arranging timing for the lab work to monitor it. as it happens i am spreading the dose out more than originally planned, so there is more time until the first followup test anyway.

i'll get tested again in a month or two, and see where i'm really at. and it will be a calcidiol test, not only calcitriol as my current lab requisitions ask for.

J

Vieth has written a number of excellent articles on vitamin D. With respect to dosage, duration and resulting concentrations, he has two fine, albeit technical papers. They are...

The Pharmacology of Vitamin D, Including Fortification Strategies


Vitamin D supplementation, 25-hydroxyvitamin D concentrations,
and safety

Cheers
Nick

thank u nick, pretty sure i've read either both these articles, or seen the information they convey referenced in other articles. i found table 3 in the pharmacology article a good read. did some math and feel i'm on the right track with my supplementation. i will read it more carefully as i feel i will need to understand about calcitriol vs free calcitriol in the ongoing lab-oriousness

okay, this is more of a journal entry than i usually post.

the mega D treatment is over. i have to go to the lab early this week and get the next set of bloodwork. still have to clear up with the doc that testing calcitriol is not the right idea. or at least, not on its own.

so, how do i feel... well, i have had a little bit of that 'just got off the trampoline' heavy feeling a bit recently, and a slight lessening of sensory in my right foot, but i was being a bit naughty for a couple of weeks there, skipping vitamin doses, and generally misbehaving. i got back on the program properly over the last week, and feel much better this weekend than last.

overall, my sensory and resulting motor problems are mostly resolved except in my forearms and hands. i used to buzz all over when i went out for a walk but i'm not noticing that so much any more. i can write, type, fumble away on some musical instruments... not the same but pretty okay. my hands just don't want to get better. i think it's because i made my unknown cervical lesion worse when i fell snowboarding right before my first attack. sometimes i feel like there might be some permanent damage there... but the physiotherapist said if i have partial sensory then there is something there to fix/heal. gotta keep that in mind! i *think* she said nerves regrow at 1mm per day, or something like that. i should double check and measure and get out the calendar. see where i'm at on that schedule! [edit jan 14 2008: my neuro recently diagnosed carpal tunnel syndrome as the cause of the outstanding numbness in my hands] [2012 update: the carpal tunnel got better, i just did one of the neuro's little tests and it didn't seem to have the effect he'd look for. however, i still have my stocking and glove peripheral neuropathy. i'm guessing it's permanent until we figure out how to repair spinal cord damage.]

i still can get a bit of l'hermitte's sign going on after a physical kind of day. i notice it particularly in the shower, not really from heat, just as if being wet on my back makes it more sensitive to the tingle. i have noticed that the buzz has moved from the base of my spine to just above the small of my back. maybe this shortened distance between cervical lesion and expression of lhermittes is a good sign. [edit jan 14 2008: now very very infrequent tingling. barely noticeable when sitting down in the car after pounding across a lot of pavement on campus. no more shower tingles] [edit 2012: lhermitte's is not something i deal with any more at all, which is nice]

i was tidying my desk today and found a grocery receipt from May 20 2006. that day i had to sign for cash back and it just has two messy initials scribbled on the receipt. i am so surprised what a short time back that was! my handwriting is pretty much back to normal.

i also turned on the computer at my old office downstairs today, and fired up windows media player. i haven't been using that station since i went down with this attack, because of the stairs. i mean i've been down there at need, but not for any length of time, not long enough to listen to music. so on went the tunes today for the first time since january... i can't believe what has happened to me since the last time i heard those songs... that was pretty intense.

[2012 update: was jamming guitar with a buddy the other day and he starts playing one of those songs... took me straight back to the mri waiting room. and then i just watched what he was doing and away we went. fun to play. especially about a minute in, have a listen
://www.youtube.com/watch?v=s9JB2ETgatI
will be forever one of my dx tunes, gah i'm a loser, little tears forming]

so that's me for today.

I am not pushing, condoning or even slightly suggesting they are correct, but it could provide a different viewpoint.

The following is a link off to the "Marshal Protocol", which is mainly used by sarcoid patients and some people with MS. They are obsessed with Vit D, but in an opposite way (they want to get NONE!). So, u probably have read their stuff, but if you havent, it is another view.
http://www.marshallprotocol.com/forum2/2572.html

hi i know [edit: 1,25(OH)2cholecalciferol] is an important thing. but. it can be elevated whether your [edit: 25(OH)cholecalciferol] is low or high. so it doesn't tell you much by itself. you need [edit: 25(OH)cholecalciferol] tested for context, and then you can get into [edit: 1,25(OH)2cholecalciferol] for more detail, once you know your frame of reference. i will check out the marshall protocol link. i may have read it but it's not ringing a bell just this second! thanks

oh okay, yes in the sarcoid patients don't they typically have high serum values for [edit: 1,25(OH)2cholecalciferol] because something blocks an enzyme that usually converts [edit: 1,25(OH)2cholecalciferol] to something else again. in that case, i would be looking at where that enzyme comes from and trying to support that function.

whereas in my case i am seeing not enough [edit: 1,25(OH)2cholecalciferol] action in my immune system and trying to support that by providing sufficient cholecalciferol supplementation when sunlight is not available.

i will have to read further to figure out how reducing [edit: 25(OH)cholecalciferol] or [edit: 1,25(OH)2cholecalciferol] would be applicable to MS.

I wouldnt spend too much time on it, i just thought it might be good to see what the other side thought, and maybe something could be taken from it (like the interaction and the ratio levels)

Originally, I was mis-diagnosed with sarcoid many moons ago. The nuerologist didn't do anything regarding Vit D (ie supplimentation or reduction)

Just as an aside, i was interested a while ago in the marshal protocol (for MS). I finally found some negative thoughts on it; dont know the science and also not to forget the fact it is mostly for sarcoid.

Its pretty Off topic but, about 3/4 of the way down (not the top), someone going by "skedloe" puts the boot into the MP claims.
http://brain.hastypastry.net/forums/showthread.php?t=30423

sorry cure i have not looked into your last post yet, just here with an update.

SO, i finally got the lab requisition stuff sorted out. i have now got my naturopath and family doctor set up to test the most meaningful form of vitamin D. just needed to go in person to explain. WHEW!

all i have right now is an old april 10th serum [edit: 25(OH)cholecalciferol] value at 72 nmol/l, and now a may 31st serum [edit: 1,25(OH)2cholecalciferol] at 110 pmol/l. soon i will know a more current [edit: 25(OH)cholecalciferol] value in nmol/l. and as has been mentioned, i will have to follow up down the road a bit due to the lag time from dosage to results in serum.

okay now for some kinda interesting news. it was recently mentioned that high [edit: 1,25(OH)2cholecalciferol] was a prob for some people. well. here's what happens when you supplement with vitamin D. your serum levels of [edit: 1,25(OH)2cholecalciferol] DON'T CHANGE! your tissue gets more sensitive to the [edit: 1,25(OH)2cholecalciferol] in the serum, and can suck it out of your blood better. so you don't actually care what your [edit: 1,25(OH)2cholecalciferol] level is except that it's in normal range. [2012 update: hahaha, past jimmylegs had no idea about the normal range nonsense yet] you just make sure the [edit: 25(OH)cholecalciferol] is high enough and you're golden. lots of [edit: 1,25(OH)2cholecalciferol]around for use by immune system. sweet!

[2010 update: at this stage my 1,25(OH)2cholecalciferol has been tested and flagged as high. i asked for the test because i was using a topical product containing 1,25(OH)2cholecalciferol. from now on i'll need to test both, with or without topical influence, and will be able to report on whether D3 supplementation affects 1,25 levels. i do have one test on record where i stopped using the topical 1,25 product and my serum 1,25(OH)2cholecalciferol normalized. also, i will look for the study which i obviously read in order to post the above, but unfortunately did not post the link. i was a newbie my bad]

hi this latest update is related to other news, some linked to the vitamin D issue, and others off topic a little.

i will be adding inosine to my daily supplements once i can find some. i may have to order it online. this will bring up my serum uric acid. i expect mine is low due to 15 years of vegan vegetarianism. and uric acid is low in ms patients. so, i will up my uric acid, by supplementing with inosine. this will be a new lab req i will have to negotiate for with the docs. [2010 update: i never found inosine but learned that my uric acid level was low due to zinc deficiency. also a result of 15 years of vegan vegetarianism. i corrected the zinc deficiency and the uric acid level resolved to healthy controls level]

i also have become interested in some chinese mushrooms discussed in the drug trials forum, but because they have a similar effect as increased uric acid, in terms of the biochemistry, i think i may just stick with the inosine. there appears to be an environmental down side to the collection of the mushrooms, which i don't imagine is a problem with uric acid!

i have issues with candida also, and i have read some interesting studies in that department. one, that MS patient spinal fluid can kill, in vitro, a bunch of cell types that we know are involved in MS. two, that the cell-killing substance is gliotoxin. three, that candida albicans excrete gliotoxin. four, i found an older study today reporting that vitamin D kills candida albicans. (the references can be found in beatms's 'i feel...' topic in the antibiotics forum). and we know ms patients are typically low in vitamin D, of course. so, my little biochemical cocktail includes candida, so it must go! i am also attacking it with acidophilus. so, that problem should resolve too. [2012 update: i didn't realize that my zinc was deficient and that was why i was suceptible to infections, including fungal ones. as for the vit D correlation, now i know that zinc repletion made a huge improvement in my vit D3 dose response. so i think zinc is a lowest common denominator for a few different disease dynamics going on in ms patients]

so now, in total the daily regimen includes

counter pillbox: b-complex, calcium, multimineral, sublingual b12, and ginkgo biloba. soon i will add inosine. [2012: never did]
*calcium and b complex help the b12 absorption

fridge pillbox: acidophilus, antioxidants (vitamin C, turmeric, natural ratio vitamin E, and selenium) and more calcium. sometimes iron as that was also low due to my strict vegan vegetarianism.
*have to take the C separately from the B12 - it interferes. i may take out some of the antioxidants once i get my hands on some inosine.

fridge liquid: 4000IU prescription vitamin d (cholecalciferol) diluted with olive oil (1/2 ml from an oral syringe, taken in a spoonful of calcium/magnesium/D flavoured liquid). OR half an hour outside with unprotected skin.

i also have flax oil and a vegetarian 3-6-9 oil that i add to foods, plus i eat fish and eggs these days for the omega fatty acids.

what i have to *stop* doing, at least until i get things normalized, is feeding the rotten candida!!

i guess i should say that at my worst point in january, i was about a 5.5 on the EDSS.

5.5 Ambulatory without aid or rest for about 100 meters; disability severe enough to preclude full daily activities

this is not counting the days immobilized on the couch with the lumbar puncture migraine.

now i would say i am a one on the EDSS, when i'm behaving with the supplements. just the mild numbness/hypersensitivity in my hands

1.0 No disability, minimal signs in one FS

i would say i jump up to about 2.5 if i slack on the regimen, because i start dragging my legs and notice spasticity in my arms, and i'll get the jimmylegs coming back a bit, tingly spine, that kind of thing.

so it is good to know that the supplements are in fact doing something. zero, here i come!

[edit to laugh at self - 2011 update, still pretty much the same. fine right up until i slack on the regimen and/or push too hard. i spent 15 years getting myself into this mess, guess i'm 1/3 of the way out!]

today i had some more of my blood sucked out. they will test:

-25hydroxycholecalciferol (the right metabolite of vitamin d3)
-uric acid
-ferritin
-rbc folate
-b12

i will post the results from australia hee hee

Can I butt in with news of my own blood test? I had blood drawn last Friday, June 23, for the 25, hydroxyvitaminD test (same one as you, jimmylegs). It is not a REAL baseline, but close enough; I haven't learned the results yet. I can't believe the fussing around I had to do to get the order for it! I had been supplementing with D for about 3 weeks at the time of test. I see no changes yet, but all the evidence (and confidence of Reinhold Vieth's writings) convinces me this will be productive.

I still think excess insulin is key; normal insulin secretion is dependent on Vitamin D. At the least, the D should make my bones stronger!

hi there, hey LC glad you got tested. right on! given the lag from dose to max serum value i don't think you have to worry too much about the three weeks. that was at 4000 IU per day, right?

anyway, drum roll please,

-25hydroxycholecalciferol: 149 nmol/l (up from 72 nmol/l)
-uric acid: 194, normal 140-340
-ferritin: 41, normal 41-300
-rbc folate: results not reported
-b12: result not reported (will ask)

so looks like the big 10 day 50,000IU per day dose of cholecalciferol did the trick! yahoo!!! i expect it might be higher in a few months. will report.

about the UA, i don't know the units for this or the amount of fluctuation that can be seen over the course of a day. but looks like i may not need to supplement with inosine after all.
*** update: research i located after this report indicated that 194 is right on the average for MS patients. whereas optimal would be 290, and gout typically occurring upwards of 350 or so. after a more recent test i was down into the 180s, so i am not making good progress yet. i have updated wikipedia with my findings related to this subject and you can read it here: http://en.wikipedia.org/wiki/Uric_acid#Low_Uric_Acid ***
[update jan 14 2008: see post dated today for more uric acid and other results from nov 30 2007 labwork] [2012 comment: those are probably about how i figured out the UA connection to zinc status....]

stupid ferritin, gotta work on that. iron deficiency neuropathy i do NOT need. could be contributing to the ongoing problems in my hands, although i think that's mostly to do with my neck injury... sometimes do have jumpy legs still... at least no longer fully jimmy-esque...!

Jimmy,

Did they test to see if you were completely bonkers?

I dread to think how much you are spending on tests and supplements - don't forget to do a bit of gold prospecting in Western Australia, you may need the money.

Last time I was there the temperature hit 48C (I imagine 120F). Please do not sunbathe in that heat. You might want to add Koala Bear steaks and Kangaroos droppings to you every increasing list of supplements.

Ian