about high dose vitamin D treatment

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Re: about high dose vitamin D treatment

Postby jimmylegs » Fri Jan 22, 2016 6:50 pm

i'm actually on a bit of a break right now but i have everything on hand. i have a bloodwork requisition in the car and once i get myself to the lab and have some updated numbers i will decide what amount i will take of each.

personally i could do the magnesium glycinate by feel; eg start with one 100 mg powder capsule per day and see how it felt, then step up another 100mg/d and so on until i started to feel the signs of excess (from xp i will notice a sort of heaviness in the thigh muscles when climbing stairs). i am very cautious with mag because i have had terrible learning curve experiences with different forms of magnesium before, with the last step in the adventure being from my taking mag bisglycinate at the wrong time of day. it took me a year to figure that one out, because i had previously taken mag citrate (less soluble/absorbable) at bedtime no problem for ages, but learned i can't take mag bisglycinate before sleep. HORRIBLE acid reflux cough, bc it is so powerful that it relaxes the lower oesophageal sphincter :S so i dialed it back to mag glycinate taken a bit before a meal and no lying down for a while after. for whatever reasons, one less glycine and more careful timing do the trick.

i can't do the d3 by feel. i've only ever felt it in a negative way, in a secondary fashion as described at length in this thread and elsewhere on the site. if i take d3 i take it *with* mag citrate and *well away* from mag glycinate. the dose division stems from a pharmacist's life-saving recommendations to do so.

i'm SO much better than i was a decade ago, but i have worked long and hard on a wide variety of interacting factors to get here. no single magic pill i'm afraid.
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
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Re: about high dose vitamin D treatment

Postby PointsNorth » Fri Jan 22, 2016 10:32 pm

@JL
I take a sustained release magnesium which is easy on my bowel: http://www.jigsawhealth.com/supplements/magnesium/

I am taking it for my spasticity but also because I have read that it is good to take it conjunction with vitamin D. I have just updated my regimen. I have read that magnesium is second only to vitamin D in terms of widespread deficiency. IMHO RDAs are criminal. Take a look at all the health conditions related to a vitamin D deficiency: https://www.vitamindcouncil.org/health-conditions/

After 40 years of suffering from bowel issues my sister reports that she is completely cured of the problems in weeks after starting to use only 2000iu per day! I cured my IBD/IBS after 7 to 8 months at a much higher dosage - 15Kiu/day
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
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Re: about high dose vitamin D treatment

Postby jimmylegs » Sat Jan 23, 2016 5:16 am

hi thanks pn. i started testing d3 on myself in 2006 and have been through the research extensively. i figured out which mag form worked for me by about 2010 if memory serves. after a decade working on all this stuff i am aware of a wide variety of benefits, interactions, and potential pitfalls.
i'm well aware of the limitations of the RDAs (not to mention those of testing and interpretation). i also know that in many cases including mag, that people's routine daily choices don't even get them up to that relatively low bar.
i think the general population would be stunned at the variety of widespread issues that would evaporate if more strict attention was paid even to the RDAs, as a first step. i also think health education in grade school is overdue for some updates, so that trying to absorb all the info at once as an adult is not so overwhelming.
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
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Re: about high dose vitamin D treatment

Postby vilnietis » Sat Jan 23, 2016 6:24 am

shadowfax wrote: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....


It is beneficial, physiological dose is 10,000IU - it is a minimum and must for us. But you should check PTH, if you have hypoparathyroidism then you already have problems with calcium. Some people blaming vitamin D for kidney stones, calcification and etc. but in my opinion it is not vitamin D to blame. Don't forgot to check kidneys, liver and also take magnesium in addition (at least 200mg) ;)

If all the test results are good, you can go as far as you wish but you shall not exceed 35,000IU. There is trial showing that this dose is safe, but then you must be more careful. You shall drink 2.5L of water per day and be on low calcium diet (no diary, nuts). Also magnesium must be increased to 600mg. Follow PTH regularly, it should not drop to zero! Perfect is then PTH is on low normal range. For example, my PTH was 15.05 (normal range 15 – 65 ng/L ) after taking 20,000IU. You shall notice improvements on such doses after longer period if PTH decreased to lowest value within normal range. If PTH is decreased unsignificantly that means person has big resistance to vitamin D. Higher dose is required if the goal is to stop MS.

To start taking very high doses (>35,000IU) - I propose to find a doctor. With higher doses it is not so straightforward as it may sound. Stopping MS is the primary goal, but doctors doesn't push the limits to far and other risks are also taken into account. One most unpopular side effect among people, who takes very high doses, is osteoporosis. Not everyone experiencing that, but solution is pretty simple - doctors gives the drugs. Also some persons (5% according doctors) seems are not reacting to vitamin D no matter what and if it is unknown at the moment if high dose will be beneficial in a longer run.

Doctor is recommended also because they have all the data. Regarding PTH, as I said my PTH was perfect on 20,000IU. I was told that my body doesn't have big resistance to vitamin D and it was good sign. Many people find that they need at least 60,000IU to start lowering PTH. However my doctor decided that 20,000IU is still too low dose. I have a lot of inflammation according MRI and I was asked to take 70,000IU. Yesterday, it was reduced to 60,000IU. I will have better picture after a year. I will do then MRI once again ;)

As you see, there are many factors and I don't know everything in details. I'm just a patient ;)
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Re: about high dose vitamin D treatment

Postby shadowfax » Sat Jan 23, 2016 10:41 am

I'm on my tenth day now at 80,000iu. To be honest my disease activity has increased so I'm starting to second guess the dosage.
The naturopath that prescribed this regimen was trained by Coimbra. The dosage is based on his recommendation of 1000iu/kilogram.

The supplements recommended are as follows

Choline.................................120mg
Magnesium Chelate......... .........100mg
Riboflavin B2...........................60mg
Zinc Chelate............................5mg
Folic Acid...............................1mg
Vitamin B12............................500mcg
Chromium Picolinate.................150mcg
Selenium..............................100mcg
In.......................................01 opaque capsule

Omega 3-3 g/day
Coq10 100mg/day

The compounding pharmacy created a concoction that was to thick to make a droplet so I take an oral dosage of 4ml
through a syringe.
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Re: about high dose vitamin D treatment

Postby vilnietis » Sat Jan 23, 2016 11:52 am

shadowfax, where are you from?
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Re: about high dose vitamin D treatment

Postby jimmylegs » Sat Jan 23, 2016 12:03 pm

highest i've ever done is 50K/d for 10 days and i never planned to keep daily intake that high for any longer.
what is an increase in disease for you, exactly? details?
do you take the d3 and the supplement mix at the same time? if so bad idea i think :S even with a normal dose of d3, daily mag amount should be divided. your mag chelate amount looks low even if there wasn't 80K of d3 in the mix. has your naturopath gone over a diet diary with you at all? have you established what your daily diet contributes in terms of mgs of magnesium and vit K?
i have never really bought in to what i was told by my naturopath. in the past i've had to correct too many medical professionals' mistakes including my doc, my naturopath and my pharmacist just to list a few. my naturopath also has ms and has progressed over the last ten years. i am still cruising along on an even keel.
personally i'll be waiting to see long term published coimbra results before buying in... if then!
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
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Re: about high dose vitamin D treatment

Postby vilnietis » Sat Jan 23, 2016 1:23 pm

jimmylegs, I do agree with you that many doubts would be left behind if we had data published by professor. No one has answer to this question :/
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Re: about high dose vitamin D treatment

Postby shadowfax » Sat Jan 23, 2016 1:28 pm

Vancouver BC Canada

No I don't take the supplements with the D3. Usually a few hours later. No dairy, no gluten, and 2+ litres of litre of water a day.
The only thing I take everyday that might be considered bad is one cup of coffee.... :-D Absolutely refuse to give that up.

Increased symptomatology in feet and hands, and light dizziness, usually towards the end of the day.
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Re: about high dose vitamin D treatment

Postby jimmylegs » Sat Jan 23, 2016 3:37 pm

making things up again huh, v. true to form.

sf, absolutely need to take some mag with the d3, and you can take the rest of your custom multi at another time.

so that's a no on having evaluated your daily dietary inputs of magnesium? coffee aside (has mag but is diuretic so that's basically a wash) what have you eaten so far today?

regardless, if you are not in a position to state definitively that your daily mag from diet averages ____________ mg, then it's probably not enough - and certainly not enough to deal with 80K of d3 yikes.

food resource: http://www.whfoods.com/genpage.php?tnam ... #foodchart
(note that serving size for anything leafy is based on it's having been boiled 1-3 mins depending on type, to increase density per serving)

that said, vancouver - tons of vendors of good mag glycinate all around
http://orangenaturals.com/essential/mag ... g_60v_cap/
http://orangenaturals.com/where-to-buy/

look for this tasty mag citrate product as well http://naturalvitality.com/natural-calm/

you could add one of the orange naturals powder caps each day, and a drink of natural calm, in addition to the custom multi. that would help your body manage the high d3 intake without it sucking all the mag out of you.

but i warn you loud and clear that 80K/d of d3, above 10 days and serum levels above 250 is well outside both my experience and my comfort zone at this time, regardless of how many people are trying it. i've been burnt a few times trying new things, and seen it happen to others with even more serious consequences; makes me more cautious.

i have posted elsewhere that my first time on 10 days of d3 @ 50 K / d my level went up by 70 nmol/L. but then a couple yrs later and with good mineral status in the mix and 50K /d over just 8 days, my serum d3 level shot up by over 170 nmol/L, from 103 to over 270 nmol/L. v reports levels over 800 nmol/L while taking 600mg magnesium (don't think a specific form was mentioned tho, and timing certainly wasn't) plus hi dose d3 daily.

compare these guys who averaged 122 nmol/L after a summer in the sun (JL note: max serum value 154 nmol/L)
Effects of Above Average Summer Sun Exposure on Serum 25-Hydroxyvitamin D and Calcium Absorption
http://press.endocrine.org/doi/abs/10.1 ... 002-020636

also
Traditionally living populations in East Africa have a mean serum 25-hydroxyvitamin D concentration of 115 nmol/l (JL note: max values +/- 170 nmol/L)
http://journals.cambridge.org/action/di ... 4511007161

i am in no way tempted to go for levels not typically seen in nature. i am trained to look for a specific target, not just 'lots' 'more' 'high' etc. for the time being i personally am comfortable maintaining levels around 125-150 nmol/L while ensuring good mag status and good nutrient status in general.

aside re van - know anyone who would feel comfortable driving a cube van for a few short trips to help with a move this coming sat eve? i know some non-drivers who are looking ;) haha
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
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Posts: 10766
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Re: about high dose vitamin D treatment

Postby shadowfax » Sat Jan 23, 2016 3:57 pm

Okay. Upped my mag to 500mg taken with the D3. You mentioned your previous experience of 50k but only for a few days.
You also said you contemplating another round. I'm curious how much and for how long?

One more thing do you think there's a saturation level with amount taken. And what amount would achieve satisfactory levels and maintain it?
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Re: about high dose vitamin D treatment

Postby jimmylegs » Sat Jan 23, 2016 4:47 pm

heya sounds better i think :S hopefully anyway!

less dangerous to your tissue mag levels at least.

i've posted already i believe, that i won't know how much or for how long until i go and get bloodwork done and see my results.

we have also previously discussed saturation levels in sunshine but we can see from the studies above that high sun exposure doesnt achieve anywhere near the serum levels that can be reached with oral d3. so i hypothesize for the time being that it's not the same and that nature has not anticipated our isolating and megadosing such a thing to the fashionable extent.

i just ate a meal of halibut with mashed/mixed rutabaga/potato/spinach that approached 400mg of magnesium. pricey however.. halibut is definitely not a frequent seafood choice. typical salmon substitution would knock that plate down into the 300 ballpark. still not bad tho!
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: 10766
Joined: Sat Mar 11, 2006 3:00 pm

Re: about high dose vitamin D treatment

Postby PointsNorth » Sat Jan 23, 2016 6:31 pm

shadowfax wrote:I'm on my tenth day now at 80,000iu. To be honest my disease activity has increased so I'm starting to second guess the dosage.
The naturopath that prescribed this regimen was trained by Coimbra. The dosage is based on his recommendation of 1000iu/kilogram.

The supplements recommended are as follows

Choline.................................120mg
Magnesium Chelate......... .........100mg
Riboflavin B2...........................60mg
Zinc Chelate............................5mg
Folic Acid...............................1mg
Vitamin B12............................500mcg
Chromium Picolinate.................150mcg
Selenium..............................100mcg
In.......................................01 opaque capsule

Omega 3-3 g/day
Coq10 100mg/day

The compounding pharmacy created a concoction that was to thick to make a droplet so I take an oral dosage of 4ml
through a syringe.


Are you taking K2? Why are you taking the chromium picolinate?

Thx, 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
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Posts: 683
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Re: about high dose vitamin D treatment

Postby jimmylegs » Sat Jan 23, 2016 8:53 pm

i noticed the k2 was missing as well, but thought maybe one thing at a time :S and good dietary mag sources often have k2 as well.. haven't paid as much attention to k2 overall, because i don't see k2 issues associated with ms in the literature. could just be a research gap that will one day be filled.
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
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Posts: 10766
Joined: Sat Mar 11, 2006 3:00 pm

Re: about high dose vitamin D treatment

Postby PointsNorth » Sat Jan 23, 2016 11:31 pm

Re: sf I think K2 is important when high dosing D to make sure calcium gets sent to the bones vs. to the arteries. Interestingly Coimbra initially included K2 in his protocol before removing it. The ND in Vancouver has recommended 2×200mcg daily. I will add this to my regimen this weekend.

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
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Posts: 683
Joined: Mon Sep 04, 2006 2:00 pm
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