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.

Re: about high dose vitamin D treatment

Postby NHE » Thu Jan 21, 2016 12:03 am

CureOrBust wrote:
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"

I think what jimmylegs was saying was analogous to the following...

In effect, in the field of mathematics, for example, it's usually fairly straight forward to construct a proof to prove some statement as true or false. However, in the field of biology, one is usually restricted to saying that said results are consistent with and support a given hypothesis.
User avatar
NHE
Volunteer Moderator
 
Posts: 4557
Joined: Sat Nov 20, 2004 3:00 pm

Advertisement

Re: about high dose vitamin D treatment

Postby vilnietis » Thu Jan 21, 2016 1:46 am

jimmylegs wrote: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


You probably have noticed already that I'm non-native English speaker. My intend was not to use "strong" words. This is just my vocabulary limitations ;)

You scientist, right? Following statement posted by a scientist I find ridiculous (sorry for a word):
"i started 'high dosing' d3 in 2006 (with the exception of two weeks separated by several years this was on the order of 4000 IU per day) and was paying a heavy price by a couple of years later."

Let's get into the details. "Heavy price" (remember hyperbole ?:) ), "high dosing" (remember hyperbole ?:) ) - is it 4000IU?
It's not high dose at all: "The American Academy of Pediatrics recommends that all babies receive routine vitamin D supplementation (400 IU per day)". What is body weight of a baby? What is yours? Why babies needs vitamin D? Yes, for the brain development. Your "heavy price" paid later is not related with LOW 4000IU dose of vitamin D. I'm not sure even what was the price.

What's my point here? My point here that this discussion can be endless here. I will never prove my point, you as well.

zorro8081980 asked about experience, here is mine:
I have tried REBIF - found many side effects, bad quality of life, only minor or none improvements at all. I asked others about drugs - found many bad comments as well.
I have tried vitamin D in 70,000IU - no side effects until this day, feel very good, symptoms gone. Had one bad day during last half of year on vitamin D. I asked others about high vitamin D doses - to your surprise I found many good comments as well.

zorro8081980 seems decided give a go to high dose of vitamin D and I salute him! He will try and will know the answer after 2-6 month. I'll be surprised if he will not feel any difference in a good way.
First thing I always do, I'm asking people about experience. We are in different MS stages, we have different MS. But we are still ALL humans and ALL humans gets drunk then taking an alcohol. I think all humans react to vitamin D also the same way. So tell me, why I should stop taking vitamin D in high doses? Because it is "unproven"? :)

Cheers!
vilnietis
Family Member
 
Posts: 60
Joined: Thu May 28, 2015 11:18 am

Re: about high dose vitamin D treatment

Postby CureOrBust » Thu Jan 21, 2016 3:53 am

vilnietis wrote:zorro8081980 seems decided give a go to high dose of vitamin D and I salute him! He will try and will know the answer after 2-6 month. I'll be surprised if he will not feel any difference in a good way.
First thing I always do, I'm asking people about experience.
...
So tell me, why I should stop taking vitamin D in high doses? Because it is "unproven"? :)
I have been on over 50,000IU D3 for over 2 months, and before that probably on > 10,000 and before that > 8,000 (for over a year). I have not noticed any improvements attributable to D3. Are you surprised?

I will continue to take >>>> 400IU until the scientists show reason otherwise, however, the claims made by Coimbra (by my experience since there is no published research) is unjustified.

And NO-ONE has told you to "stop taking vitamin D in high doses", people have only questioned the effectiveness of the Coimbra protocol, and my own experience is just as valid as anyone-else's.

The ironic thing about "Coimbra Protocol" is, every time I read it, I can't help but (ironically) think of the "Marshal Protocol".
User avatar
CureOrBust
Family Elder
 
Posts: 3341
Joined: Wed Jul 27, 2005 2:00 pm
Location: Sydney, Australia

Re: about high dose vitamin D treatment

Postby vilnietis » Thu Jan 21, 2016 6:08 am

What was your PTH level before and after high doses?
vilnietis
Family Member
 
Posts: 60
Joined: Thu May 28, 2015 11:18 am

Re: about high dose vitamin D treatment

Postby PointsNorth » Thu Jan 21, 2016 8:33 am

CureOrBust wrote:
vilnietis wrote:zorro8081980 seems decided give a go to high dose of vitamin D and I salute him! He will try and will know the answer after 2-6 month. I'll be surprised if he will not feel any difference in a good way.
First thing I always do, I'm asking people about experience.
...
So tell me, why I should stop taking vitamin D in high doses? Because it is "unproven"? :)
I have been on over 50,000IU D3 for over 2 months, and before that probably on > 10,000 and before that > 8,000 (for over a year). I have not noticed any improvements attributable to D3. Are you surprised?

I will continue to take >>>> 400IU until the scientists show reason otherwise, however, the claims made by Coimbra (by my experience since there is no published research) is unjustified.

And NO-ONE has told you to "stop taking vitamin D in high doses", people have only questioned the effectiveness of the Coimbra protocol, and my own experience is just as valid as anyone-else's.

The ironic thing about "Coimbra Protocol" is, every time I read it, I can't help but (ironically) think of the "Marshal Protocol".


@Cure
Coimbra is using 1,000iu D PER 1kg (2.2 lbs.) bodyweight as a starting point. Based on my bodyweight I should be taking 65,000iu but I am only starting to notice very small positive changes at 100,000iu! I plan on going north of 100Kiu continuing to monitor blood every 6 weeks as I have done since the start of high dosing. At these levels I personally believe that it is imperative to take vitamin K2.

I do not know your body weight but 50,000iu may not be enough D.

Best, PN
Albany 2010. Brooklyn 2011
Hayes inspired Calcitriol+D3 2013-2014
Coimbra Protocol 2014-16
DrG B12 Transdermal Spray 2014-16
Progesterone 2015-16
Low-Dose Immunotherapy 2015-16
My Current Regimen http://www.thisisms.com/forum/regimens-f22/topic25634.html
PointsNorth
Family Elder
 
Posts: 683
Joined: Mon Sep 04, 2006 2:00 pm
Location: LeftCoast Canada

Re: about high dose vitamin D treatment

Postby jimmylegs » Thu Jan 21, 2016 8:39 am

hyperbole: the use of obvious and deliberate exaggeration.

fact: event, item of information, or state of affairs existing, observed, or known to have happened, and which is confirmed or validated to such an extent that it is considered 'reality.'

some facts:

recommendations applicable when i began high dosing

VITAMIN D: The Current State in Canada (up to 2008)
https://www.cfdr.ca/Downloads/CCFN-docs ... 9-_2_.aspx

Life Stage(y)..Adequate(IU/d)..Tolerable Upper Intake(IU/d)..No Observed Adverse Effect(IU/d)
19 to 50..............200...................................2000.............................2400

interesting language there; no 'observed' adverse effect. tough to observe things you're not bothering to measure...

TUILs went up to 4000 IU/d *note that this includes total daily intake from diet, biosynthesis and supplements* years after my negative experience

recommendation updates 2012
http://www.hc-sc.gc.ca/fn-an/nutrition/ ... -d-eng.php
Age group...........Recommended Daily Amount/d....Tolerable Upper Intake Level (UL) /d
Adults > 70 years........800 IU (20 mcg)........................4000 IU (100 mcg)

recommendation updates 2014
http://www.hc-sc.gc.ca/fn-an/consult/20 ... ng.php#a42
Nutrient..........Daily Value Canada (current).....US (current)........Canada/US Proposed
Vitamin D...............5 μg (200 IU).................400 IU (10 µg)..........15 μg (600 IU)

interesting to note that DVs on food labeling are not actually consistent with the RDAs...

today
http://www.hc-sc.gc.ca/fn-an/nutrition/ ... bl-eng.php
age......Est Avg Reqs(IU/d).RDAs/Adequate Intakes(IU/d).Tolerable Upper Intake Levels(ULs)(IU/d)
19-70+ y.........400......................600.......................................................4000

*recall this includes total daily intake from diet, biosynthesis and supplements*

this article chronicles part of the expert conversation:
Most Canadians don’t need vitamin D supplements: study
http://news.nationalpost.com/news/most- ... ents-study

high dose details have been posted previously, and found by other members with recent clarifications given here:
general-medications-f42/topic27184.html#p238596

as you will see, if you do read the details, the long term 4000 IU/d is not the full story but regardless this amount, 4000 IU/d of supplemental vitamin D3, in addition to any obtained from diet and from biosynthesis, exceeds even current updated upper intake limit recommendations. as stated previously there was a time i was right on board with the 10,000 IU per day idea, but no longer.

heavy price info was posted to this thread on sun jan 17.

as for cause, i will once again post the link detailing a pharmacist's identification of the problem
chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic14805-675.html#p223619

i did what he said, my life instantly (within 48 hours, and reversibly - i tested it out) changed for the better, i'm convinced.

since then i've helped others deal with problems achieving desired serum vit d3 targets. this was done by helping them work on cofactors. this is not news; one related study i saw recently was published in the 1970s. for one member i can think of in particular, desired serum d3 targets were reached on much lower daily doses ONLY after attention to cofactors. d3 high dosing wasn't moving their serum numbers as desired before, and serum d3 response jumped up after.

obviously you're free to think whatever you like - enjoy
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
User avatar
jimmylegs
Volunteer Moderator
 
Posts: 10770
Joined: Sat Mar 11, 2006 3:00 pm

Re: about high dose vitamin D treatment

Postby vilnietis » Thu Jan 21, 2016 9:07 am

jimmylegs,
I take 70,000IU and 600mg per day for 6.5 months already. When do you think my problems with magnesium should start? what was your first symptom if you recall? ;)
My search criteria: multiple sclerosis + vitamin D + 10,000. Go to this link:

http://www.ncbi.nlm.nih.gov/pubmed/?ter ... D+10%2C000

Search found 19 results as of today.I sorted results by publication date. Let's look at all trials starting from the oldest, I skipped trials which doesn't have conclusions/results:

http://www.ncbi.nlm.nih.gov/pubmed/19383644
CONCLUSIONS:

We conclude that large numbers of patients with MS and TM in our cohort are deficient in vitamin D. HDE significantly elevated 25(OH)D levels in MS patients and was more effective at increasing 25(OH)D levels than LDC. Prospective studies are required to determine appropriate dosing regimen to achieve optimal levels in the majority of MS patients and to ascertain the safety, immunological response, and ultimately the clinical efficacy of vitamin D replacement therapy.

http://www.ncbi.nlm.nih.gov/pubmed/19790114
CONCLUSION:

Our findings are consistent with a protective immunomodulatory effect of ambient UV radiation on the onset of WG and CSS. We discuss possible mechanisms, including the effect of vitamin D on the immune system.

http://www.ncbi.nlm.nih.gov/pubmed/20427749
CONCLUSIONS:

High-dose vitamin D (approximately 10,000 IU/day) in multiple sclerosis is safe, with evidence of immunomodulatory effects.

http://www.ncbi.nlm.nih.gov/pubmed/21179201
CONCLUSION/SIGNIFICANCE:

Twelve week supplementation of high dose vitamin D3 in RRMS patients was well tolerated and did not induce decompensation of calcium metabolism. The skewing towards an anti-inflammatory cytokine profile supports the evidence on vitamin D as an immune-modulator, and may be used as outcome measure for upcoming randomized placebo-controlled trials.

http://www.ncbi.nlm.nih.gov/pubmed/21542721
Abstract

Multiple sclerosis (MS) is an inflammatory disease in which the myelin sheaths around the axons of the central nervous system are damaged. The damage leads to demyelination and scarring as well as a broad spectrum of signs and symptoms. The epidemiological data suggest a possible influence of vitamin D as an immunomodulatory agent on multiple sclerosis susceptibility as well as on clinical course of the disease. We investigated the effects of short-term vitamin D3 therapy on Iranian patients with MS. In a prospective randomized controlled trial study, 62 MS patients received 300,000 IU/month vitamin D3 or placebo as intramuscular injection for 6 months. Our results showed no significant difference between the treatment and the control groups in the expanded disability status scale scores and number of gadolinium-enhancing lesions during the 6-month treatment period. After 6 months, the levels of cell proliferation in the vitamin D treatment group were significantly lower than the control group. Also, the levels of transforming growth factor-beta and interleukin-10 in the vitamin D treatment group were significantly higher than the control group. This result suggests that vitamin D therapy may help prevent the development of MS and could be a useful addition to the therapy.

http://www.ncbi.nlm.nih.gov/pubmed/21300969
CONCLUSIONS:

Sun exposure and vitamin D status may have independent roles in the risk of CNS demyelination. Both will need to be evaluated in clinical trials for multiple sclerosis prevention.

http://www.ncbi.nlm.nih.gov/pubmed/21459809
CONCLUSION:

The reported prevalence and incidence figures in our study were higher than in our previous report of 2007, in which the prevalence and incidence of MS were reported to be 43.8 and 3.64 per 100,000, respectively. This dramatic increase in the prevalence of MS puts Isfahan amongst the regions with the highest prevalence of MS in Asia and Oceania and is mostly due to changing environmental factors, amongst which vitamin D deficiency seems an important factor in our population.

http://www.ncbi.nlm.nih.gov/pubmed/21697250
RESULTS:

At 12 months, mean serum 25-hydroxyvitamin D [25(OH)D] concentrations were 83 ± 35 nmol/liter and 179 ± 76 nmol/liter in control and treated participants, respectively (paired t, P < 0.001). Serum 1,25(OH)(2)D did not differ between baseline and 1 yr. In treated patients, 12-month PBMC proliferative responses to neuron antigens myelin basic protein and exon-2 were suppressed (P = 0.002). In controls, there were no significant changes in disease-associated PBMC responsiveness. There were no significant differences between groups in levels of selected biomarkers.
INTERPRETATION:

MS-associated, abnormal T cell reactivities were suppressed in vivo by cholecalciferol at serum 25(OH)D concentrations higher than 100 nmol/liter.

http://www.ncbi.nlm.nih.gov/pubmed/22190362
INTERPRETATION:

A causative role for CYP27B1 in MS is supported; the mutations identified are known to alter function having been shown in vivo to result in rickets when 2 copies are present. CYP27B1 encodes the vitamin D-activating 1-alpha hydroxylase enzyme, and thus a role for vitamin D in MS pathogenesis is strongly implicated.

http://www.ncbi.nlm.nih.gov/pubmed/22457344
Although vitamin D deficiency is considered an environmental factor in multiple sclerosis (MS), the immunological and clinical effects of vitamin D supplementation remain unclear. We performed a pilot study of the immunomodulatory effects of vitamin D in healthy individuals (n=4), who took 5000-10,000 IU/day of vitamin D over 15 weeks. After 15 weeks of vitamin D supplementation, serum 25(OH) vitamin D levels rose significantly from baseline, with a corresponding increase in IL-10 production by peripheral blood mononuclear cells and a reduced frequency of Th17 cells. These data provide a strong rationale for randomised trials to assess the clinical effects of vitamin D supplementation in MS.

http://www.ncbi.nlm.nih.gov/pubmed/25773149
CONCLUSIONS:

We showed increased serum latency activated peptide (LAP) of TGF-β levels in MS patients treated with vitamin D3. The immune regulatory effects of TGF-beta may play a role in the improved MRI outcomes that we observed earlier in the vitamin D treated group of patients.


I left this one as the last. http://www.ncbi.nlm.nih.gov/pubmed/22354743
CONCLUSION:

Supplementation with 20,000 IU vitamin D(3) weekly did not result in beneficial effects on the measured multiple sclerosis-related outcomes. This study was not powered to address clinical outcomes, but none of the results were suggestive of an effect in this unselected population of fully ambulatory persons with multiple sclerosis.

So 20,000IU per week (~3000IU per day) DID NOT RESULT in beneficial effects on the measured multiple sclerosis-related outcomes.
Isn't interesting, that the amount of vitamin D usually recommended doesn't have any effect? :)
vilnietis
Family Member
 
Posts: 60
Joined: Thu May 28, 2015 11:18 am

Re: about high dose vitamin D treatment

Postby jimmylegs » Thu Jan 21, 2016 6:56 pm

depends, how do you time intakes of each daily, and what are your serum levels of d3 and magnesium.

you seem to have the impression that i don't think good d3 status is a good idea. you couldn't be more wrong.
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
User avatar
jimmylegs
Volunteer Moderator
 
Posts: 10770
Joined: Sat Mar 11, 2006 3:00 pm

Re: about high dose vitamin D treatment

Postby vilnietis » Thu Jan 21, 2016 9:14 pm

Serum level of magnesium doesn't show anything and I do not test it.
Vitamin D level is >850noml/L for the past 6 months.

In my opinion, physiological vitamin D dose is 10,000IU.
I would recommend go this path after diagnosis. Do examination and make sure that liver and kidneys are in good condition. Otherwise, vitamin D high level won't help much ;) Check PTH and ionized calcium to rule out hyperparathyroidism and to avoid hypercalcemia. If all tests are good, go with vitamin D 10,000IU dose. Every PwMS shall take at least such dose with 400mg of magnesium.
Now calcium is interesting topic as well. We should not take calcium supplements! Calcium intake shows increased volumes of hyperintensive lesions in white matter under MRI scans in even healthy people. I'm avoiding calcium supplements, calcium rich foods (all diary products and nuts). Coimbra forces to do this under high vitamin D doses, but I found out later that calcium supplement is not good idea anyway.

For the best effect, we need much more of vitamin D. Usually dose starts from 60.000IU and we need to increase magnesium to at least 600mg. But this must be done under doctor supervision.
vilnietis
Family Member
 
Posts: 60
Joined: Thu May 28, 2015 11:18 am

Re: about high dose vitamin D treatment

Postby jimmylegs » Fri Jan 22, 2016 4:22 am

serum mag would indicate whether your combo was keeping things in good shape or heading you towards that first symptom. magnesium deficiency is readily measurable using the serum test. the timing of daily doses of d3 and mag can be done well or poorly. this info would also be telling.
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
User avatar
jimmylegs
Volunteer Moderator
 
Posts: 10770
Joined: Sat Mar 11, 2006 3:00 pm

Re: about high dose vitamin D treatment

Postby vilnietis » Fri Jan 22, 2016 8:20 am

jimmylegs wrote:serum mag would indicate whether your combo was keeping things in good shape or heading you towards that first symptom. magnesium deficiency is readily measurable using the serum test. the timing of daily doses of d3 and mag can be done well or poorly. this info would also be telling.

I found such info:
Serum or blood level measurements are usually inadequate because magnesium operates on a cellular level and accumulates in organ and nerve tissue. So even good results with blood testing are very often deceptive, leaving one with a magnesium deficiency.
vilnietis
Family Member
 
Posts: 60
Joined: Thu May 28, 2015 11:18 am

Re: about high dose vitamin D treatment

Postby jimmylegs » Fri Jan 22, 2016 3:03 pm

when you go back to the original study from which all such claims flow it says that serum can be 'NORMAL' when tissue levels are low. that is statistics 'normal', nothing to do with 'good'. and it has nothing whatsoever to do with the value of a serum test - the actual problem is with the interpretation of test results given max and min levels on the accepted 'normal' range (which can vary lab to lab)
under the current definition of 'normal' mag, ms and other chronic disease patients are have low normal serum mag levels while healthy controls are high normal or even in magnesium 'excess'. doesn't matter whether you match an ms profile or a healthy profile, as far as the doc is concerned you're 'normal'.. and that is presumed to be just fine. sound familiar?
mag is not the only nutrient with this problem, and docs don't even necessarily notice if a patient is a hair's width from a minimum - rather than tell this story again i'll refer you to the seven other times i've told this story here at TiMS over the last 5 yrs or so
https://www.google.ca/search?q=10.083+s ... e&ie=UTF-8
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
User avatar
jimmylegs
Volunteer Moderator
 
Posts: 10770
Joined: Sat Mar 11, 2006 3:00 pm

Re: about high dose vitamin D treatment

Postby shadowfax » Fri Jan 22, 2016 3:46 pm

Lot's of links and facts been bantered about here. Bottom line:

Does the evidence show increased D3 is beneficial to people with MS
and if so whats a safe ideal daily intake?

Nothing more and nothing less....
shadowfax
Family Member
 
Posts: 44
Joined: Sun Dec 13, 2015 1:31 pm

Re: about high dose vitamin D treatment

Postby jimmylegs » Fri Jan 22, 2016 4:02 pm

serum levels above the norm considered protective for osteoporosis (~75-80 nmol/L) are associated w reduced risk of ms specifically (eg >100 nmol/L being highest quintile in one study).

as for safe ideal daily, dose response is complex and will vary depending on the individual so hard to say. following standard health recommendations for *all* essential nutrients would be your play it safe approach.

adaptive managment - test a few levels, figure out how far you have to go for each, make a plan, implement, retest, rinse and repeat.
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
User avatar
jimmylegs
Volunteer Moderator
 
Posts: 10770
Joined: Sat Mar 11, 2006 3:00 pm

Re: about high dose vitamin D treatment

Postby shadowfax » Fri Jan 22, 2016 5:21 pm

Jimmylegs...I saw from one of your previous post that you were taking a higher dose but had a problem with magnesium?
Are you still taking it and if so how much?
Also have you seen any improvements?
shadowfax
Family Member
 
Posts: 44
Joined: Sun Dec 13, 2015 1:31 pm

PreviousNext

Return to General Discussion

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service