about high dose vitamin D treatment

If it's on your mind and it has to do with multiple sclerosis in any way, post it here.
User avatar
jimmylegs
Volunteer Moderator
Posts: 12592
Joined: Sat Mar 11, 2006 3:00 pm

Re: about high dose vitamin D treatment

Post by jimmylegs »

re magnesium, exactly. needs to be right up front.

fyi re sunshine:
"If there is sustained exposure to ultraviolet light, the previtamin D and vitamin D in skin deteriorate to tachysterol and other compounds. This photodecomposition explains why excess sun exposure does not cause vitamin D intoxication." http://www.direct-ms.org/pdf/VitDVieth/ ... it%20D.pdf

one prior relevant discussion:
Vit D3>125nmol/L min in blood. FIRST SMALL STEP for pwMS
http://www.thisisms.com/forum/chronic-c ... ml#p223616

986 results from google search on:
"vitamin d" magnesium jimmylegs site:www.thisisms.com
https://www.google.ca/?gws_rd=ssl#q=%22 ... isisms.com
active members shape site content. if there is a problem, speak up!
use the report button to flag problematic post content to volunteer moderators' attention.
shadowfax
Family Member
Posts: 45
Joined: Sun Dec 13, 2015 1:31 pm

Re: about high dose vitamin D treatment

Post by shadowfax »

I started high dose vitamin D this week. I was convinced to give it a try because of the University Of Cambridge study that came out last fall.
I was lucky to be able to see a naturopath trained by Coimbra. Started at 100,000iu for 3 days and am now at 80.000iu based on my weight.

There are quite a few supplements the most important being zinc, magnesium, and K2. Have given up dairy, sugar, and gluten, and I try to
drink 2+litres of water a day.

I tried the antibiotic Wheldon protocol for 18/months and it did nothing for me except rot my gut. I am however optimistic about this and
will let you know of any changes as I proceed. :-D
User avatar
jimmylegs
Volunteer Moderator
Posts: 12592
Joined: Sat Mar 11, 2006 3:00 pm

Re: about high dose vitamin D treatment

Post by jimmylegs »

curious re daily dosages, and how often levels are tracked of the various other nutrients given?
active members shape site content. if there is a problem, speak up!
use the report button to flag problematic post content to volunteer moderators' attention.
vilnietis
Family Member
Posts: 60
Joined: Thu May 28, 2015 11:18 am

Re: about high dose vitamin D treatment

Post by vilnietis »

jimmylegs wrote:re magnesium, exactly. needs to be right up front.

fyi re sunshine:
"If there is sustained exposure to ultraviolet light, the previtamin D and vitamin D in skin deteriorate to tachysterol and other compounds. This photodecomposition explains why excess sun exposure does not cause vitamin D intoxication." http://www.direct-ms.org/pdf/VitDVieth/ ... it%20D.pdf
Interesting read jimmylegs, thank you. But I do understand that your pasted fragment explains: why human body produces not more than ~10,000IU after sustained exposure to the sun, why it is safe to be exposed all day and why intoxication doesn't happen after spending all day in the beach ;) This doesn't rule out that your body produces 10,000IU per day. So if you had problems with only 4000IU, you should have even bigger problems during the summer. Sounds strange to me. Are you sure it was vitamin D?
This paper also confirms that 10,000IU is safe dose to everyone!
User avatar
jimmylegs
Volunteer Moderator
Posts: 12592
Joined: Sat Mar 11, 2006 3:00 pm

Re: about high dose vitamin D treatment

Post by jimmylegs »

actually that fragment doesn't mention 'not more than 10,000 IU' for cutaneous synthesis at all. i'm not seeing any claim re the amount of uv intensity required over time to trigger any process degradation.

there is only one mention of the figure 10,000 in the article, and it is not in a sentence claiming that this daily exposure is safe for everyone. it does propose in fig 9.4 the idea that early humans might reasonably have been exposed to 4000 IU/d (this supposition being based on exposure in modern high sun exposure humans).

where the figure 10,000 does appear is as follows: "At least four studies show that UV exposure of the full skin surface of an adult is equivalent to a vitamin D consumption of about 250 ug (10,000 IU/d) (Stamp, 1975; Davie et al., 1982; Holick, 1995; Chel et al., 1998)."

the Stamp study cited doesn't make this sunlight / 10,000 IU/d equivalency claim at all, although it does examine cutaneous response to full body UV exposure in 8 subjects, of various skin tones, over a period of less than 2 weeks (fig 4). no time to look at the rest but it does provide bit of a reality check re where that more sweeping statement is coming from.

re summer sun - never mind that we have by no means established that the cutaneous synthesis cutoff equates to a 10,000 IU oral dose, people do not synthesize d3 from sunshine at uniform rates, and part of the picture is having the necessary nutritional cofactors in the mix. sample study here:
http://www.thisisms.com/forum/general-d ... ml#p231513 (mag + sun = d3)

re safe dose, nowadays i am still looking forward to seeing a published peer-reviewed study that exceeds six months' duration at a truly high daily dose while tracking 25(OH)d3 as well as mineral cofactors in serum.
active members shape site content. if there is a problem, speak up!
use the report button to flag problematic post content to volunteer moderators' attention.
User avatar
jimmylegs
Volunteer Moderator
Posts: 12592
Joined: Sat Mar 11, 2006 3:00 pm

Re: about high dose vitamin D treatment

Post by jimmylegs »

bump for shadowfax
"curious re daily dosages, and how often levels are tracked of the various other nutrients given"
active members shape site content. if there is a problem, speak up!
use the report button to flag problematic post content to volunteer moderators' attention.
vilnietis
Family Member
Posts: 60
Joined: Thu May 28, 2015 11:18 am

Re: about high dose vitamin D treatment

Post by vilnietis »

Not related to MS, but I found such study, which proves safety for taking high vitamin D dose daily:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3897595

Nine patients with psoriasis and 16 patients with vitiligo received vitamin D3 35,000 IU once daily for six months in association with a low-calcium diet (avoiding dairy products and calcium-enriched foods like oat, rice or soya “milk”) and hydration (minimum 2.5 L daily).
....
Serum urea, creatinine and calcium (total and ionized) did not change and urinary calcium excretion increased within the normal range. High-dose vitamin D3 therapy may be effective and safe for vitiligo and psoriasis patients.
User avatar
jimmylegs
Volunteer Moderator
Posts: 12592
Joined: Sat Mar 11, 2006 3:00 pm

Re: about high dose vitamin D treatment

Post by jimmylegs »

incorrect on a couple of fronts.
technically, this study's findings *support*, (ie they do not *prove* anything whatsoever), the utility of 35,000IU per day for psoriasis/vitiligo, over *six months*.
'safety' assessed only in terms of urea, creatinine, and calcium status, not in terms of other important minerals, and only in the short term, relatively speaking.
you'll note in particular the word 'may' in the final sentence. study results are never presented as absolute truths. doing so would fly in the face of the scientific method.
i look forward to the day this search actually finds something (wishful thinking since i have not seen even one such study yet, never mind enough to conduct systematic review and meta analysis)
https://scholar.google.ca/scholar?q=met ... 5&as_vis=1
active members shape site content. if there is a problem, speak up!
use the report button to flag problematic post content to volunteer moderators' attention.
shadowfax
Family Member
Posts: 45
Joined: Sun Dec 13, 2015 1:31 pm

Re: about high dose vitamin D treatment

Post by shadowfax »

Dosage is based on 1000iu per kilogram of weight. The supplements were recommended by the naturopath.
Bloodwork and urine are monitored every 60 days to track PTH and calcium levels.
User avatar
jimmylegs
Volunteer Moderator
Posts: 12592
Joined: Sat Mar 11, 2006 3:00 pm

Re: about high dose vitamin D treatment

Post by jimmylegs »

ok thanks for the info. disappointing, but good to know.
active members shape site content. if there is a problem, speak up!
use the report button to flag problematic post content to volunteer moderators' attention.
shadowfax
Family Member
Posts: 45
Joined: Sun Dec 13, 2015 1:31 pm

Re: about high dose vitamin D treatment

Post by shadowfax »

Not sure why you find that disappointing?
User avatar
jimmylegs
Volunteer Moderator
Posts: 12592
Joined: Sat Mar 11, 2006 3:00 pm

Re: about high dose vitamin D treatment

Post by jimmylegs »

oh just the monitoring's tight focus on pth/calcium.
active members shape site content. if there is a problem, speak up!
use the report button to flag problematic post content to volunteer moderators' attention.
vilnietis
Family Member
Posts: 60
Joined: Thu May 28, 2015 11:18 am

Re: about high dose vitamin D treatment

Post by vilnietis »

jimmylegs, I think if I have had a problems with small vitamin D dose similar to you (still not convinced that it was vitamin D) I would probably be also very cautious about it. But it is inappropriate to say that trials are useless or trials about vitamin D doesn't prove anything. To me, trials proved that it is safe to take higher doses than initially was thought and vitamin D has a lot to offer. In practice it turned out, that high doses (>20,000IU) has even greater impact to MS disease and many people experiencing now that. This is how vitamin D high dose protocol was created by Coimbra. He started to increase doses for a patients, patients noticed to see big improvements and all blood/urine tests stayed under the safe limits.
It's almost impossible to measure, as you jimmylegs said, all mineral cofactors in serum, urine and etc. Do you think drug trials takes into account all side effects? I really doubt it. Any drug has more side effect than vitamin D. Still, vitamin D is the worst and most toxic compound available to MS patient :)
User avatar
CureOrBust
Family Elder
Posts: 3374
Joined: Wed Jul 27, 2005 2:00 pm
Location: Sydney, Australia

Re: about high dose vitamin D treatment

Post by CureOrBust »

vilnietis wrote:But it is inappropriate to say that trials are useless or trials about vitamin D doesn't prove anything.
No-one said it doesn't prove "anything", simply that a trial for a specific "thing" does not prove anything BUT ONLY that one "thing"
vilnietis wrote:In practice it turned out, that high doses (>20,000IU) has even greater impact to MS disease and many people experiencing now that. This is how vitamin D high dose protocol was created by Coimbra. He started to increase doses for a patients, patients noticed to see big improvements and all blood/urine tests stayed under the safe limits.
And all he needed to do was document his results. If the people who have been on high Vit D without the Coimbra results also documented their results...
vilnietis wrote:It's almost impossible to measure, as you jimmylegs said, all mineral cofactors in serum, urine and etc. Do you think drug trials takes into account all side effects? I really doubt it.
Actually, YES, trials take into consideration ALL "side effects". They will be listed as "adverse events" even if they are not expected or even if they are considered to be not because of the drug being tested (read the first sentence of https://en.wikipedia.org/wiki/Adverse_event) . You will read numerous trials where participants have had serious events occur during the trial and the people writing up the trial will log the event and comment that it is not believed to be caused by the trial. Its part of the "scientific method". So yes, the drug companies have to "takes into account all side effects" as part of the trial process.
User avatar
jimmylegs
Volunteer Moderator
Posts: 12592
Joined: Sat Mar 11, 2006 3:00 pm

Re: about high dose vitamin D treatment

Post by jimmylegs »

recapping pharmacist xp wrt d3 side effects:
http://www.thisisms.com/forum/chronic-c ... ml#p223619

as a scientist, i would never say trials are useless and i'll thank you not to put such words into my mouth. hopefully readers will recognize your tactic for what it is, and disregard.

i will confirm emphatically that one trial does not 'prove' anything. i will go further and say that one study does not 'prove' even one specific thing.

related:
http://abyss.uoregon.edu/~js/glossary/p ... ation.html
http://www.americanscientist.org/issues ... oming-bias

"No amount of experimentation can ever prove me right; a single experiment can prove me wrong." - Albert Einstein

as posted previously - personally, prior to side effects, i definitely felt no positive effect from increasing my serum d3 levels. again, that is not to say i did not feel some comfort knowing my levels were higher, given the available science on the subject of d3 levels and ms risk. considering that i have definitely and repeatedly *felt* the effects of other supplements, i am definitely in a position to make this anecdotal comparison.

blood and urine tests of pth and calcium do fail to measure other important mineral cofactors and as for the *number* of those cofactors, i'll thank you again not to put words in my mouth re 'all' when i suggest that looking at calcium may not be enough. the list of essential minerals with significance to ms patients AND which are known to interact with d3 is mercifully short. without a look at the research, off the top i can think of two besides calcium worth evaluating during long term d3 trials.

drug trials and side effects have absolutely nothing to do with this discussion. as for 'worst' and 'most toxic', once again not applicable, and i'll thank you a third time not to suggest that i said things i certainly did not say.
The use of hyperbole in the argumentation stage
http://scholar.uwindsor.ca/cgi/viewcont ... ssaarchive
active members shape site content. if there is a problem, speak up!
use the report button to flag problematic post content to volunteer moderators' attention.
Post Reply
  • Similar Topics
    Replies
    Views
    Last post

Return to “General Discussion”