Vit D3>125nmol/L min in blood. FIRST SMALL STEP for pwMS

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Re: Vit D3>125nmol/L min in blood. FIRST SMALL STEP for pwMS

Postby NZer1 » Wed Apr 23, 2014 10:42 am

An interesting approach to understanding Vit D and MS would be use the episodic or TM (transverse Myelitis of the brain) form of MS and test regularly to establish if the relapse faze is the reason that Vit D is required or if the process of having a relapse uses hi amounts of Vit D. Many diseases draw high amounts of Vit D either by the cause of the disease or by the healing.

Another angle that is often debated with Vit D is the levels and the bodies ability to use the Vit D. A recent article;
From www.chronicillnessrecovery.org

The Compromised Immune System

Persistent intracellular bacterial infection compromises the immune system
and causes a chronic inflammatory response.[1, 2] Cell-wall-deficient
bacteria parasitize nucleated cells in order to escape host defenses, thus
contributing to failures of treatment.[3, 4] The concept that intracellular
bacteria are protected from the host's immune response was first proposed by
Rous in 1916.[5] In an essay on the renin-angiotensin system and the immune
response, Smith postulates that unresolved cellular stress is caused by
infectious agents, with the deliberate intent to avoid adaptive immune
responses.[6] The host immune system has developed many mechanisms to
neutralize and remove pathogenic bacteria. In turn, bacteria have developed
mechanisms to alter and evade the host immune response.[7] For example,
regulation of the vitamin D receptor (VDR) is a common mechanism used in the
host defense against pathogens, but certain microbes have been shown to slow
innate immune defenses by down-regulating the VDR:

Mycobacterium tuberculosis down-regulates VDR activity.[8]
Mycobacterium leprae inhibits VDR activity through down-regulation of
CYP27B1 in monocytes.[9]
Aspergillus fumigates secretes a toxin capable of down-regulating VDR in
macrophages.[10]
Epstein-Barr virus lowers VDR activity.[11]
HIV completely shuts down VDR activity.[12]
In VDR knockout mice, a circumstance that closely mimics extreme VDR
dysregulation, 1,25-D levels increase by a factor of ten.[13]

Slowing the ability of the VDR to express elements of innate immune function
allows intracellular bacteria to persist in the cytoplasm of nucleated cells
and increases susceptibility to co-infections that are commonly found in
patients with chronic illnesses (e.g., viruses, fungi, parasites and
cell-walled bacteria).[14]

Elevated 1,25(OH)2D is evidence of the dysregulated immune system's attempt
to activate the VDR to produce antimicrobial peptides (e.g., cathelicidin)
to combat infection.[15] Studies have found elevated 1,25(OH)2D and reduced
cathelicidin in chronic diseases:

Sarcoidosis patients are deficient in cathelicidin despite healthy vitamin
D3 levels.[16]
1,25(OH)2D is elevated (>60 pg/ml) in 42% of Crohn's patients and the source
of the active vitaminD production appears to be the inflamed intestine.[17]
1,25(OH)2D is elevated in the synovial fluid of patients with RA.[18]
Crohn's disease decreases expression of cathelicidin.[19]

1,25(OH)2D is a marker of vitamin D endocrine function.[20] Down-regulation
by bacterial ligands may prevent the VDR from expressing the enzymes
necessary to keep 1,25(OH)2D in a normal range. Elevated 1,25(OH)2D also
reduces VDR competence, suppresses macrophage function, and inhibits the
Nuclear Factor kappa-ß cytokine pathway, thus further compromising the
immune system.[21-23]
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Re: Vit D3>125nmol/L min in blood. FIRST SMALL STEP for pwMS

Postby jimmylegs » Wed Apr 23, 2014 11:48 am

I agree with you Ed and from my analysis the evidence shows our conclusion. However, Jimmylegs disagrees with us.
emphatically, yes. about 6 years ago i would have been right on the same page, but no longer. but, that's just me. (or not..!):

Overdosing Vitamin D3
Carolyn Dean MD ND | Monday, December 24, 2012
“Due to having severe bone lose my doctor told me to take D3 but did not tell me to take magnesium. After being on the D3 at dosage of only 2000[IU] per day I started having cramps, heart palpitations, fatigue, insomnia, high blood pressure (I had always had low BP ) and many other problems. I thought it was the D3 so I stopped and started doing research to find that you never take D3 without mag. If your magnesium level is already low the D3 will use up more of your magnesium and cause all kinds of problems. All that summer I could not even get out in the sun to get natural vitamin D without getting heart palpitations and cramps in my legs. It has took me almost 2 yrs and I am still not 100%. ... Before taking magnesium my cholesterol was running a little high. Thyroid level was running low ... after taking magnesium for about 6 months my thyroid levels and cholesterol levels were both back in normal range plus my iron had gone up from 41 to 82 and my B12 had gone from 401 to 800. Fasting blood sugar went from 103 to 98. The only thing I was taking was maggie so I know that is what did it.”
Bottom line? Magnesium is active in over 80% of the body’s biological functions so many of the interrelationships and intricacies haven’t even been studied yet. What do we suggest? Keep taking your magnesium and to balance your vitamin D, use natural sunlight, cod liver oil and butter oil for the necessary vitamin A and vitamin K that make vitamin D work properly.
The Vitamin D Debate
http://drcarolyndean.com/2013/03/the-vitamin-d-debate/
My first questions about the safety of high dose Vitamin D came when I heard about people taking high doses and developing magnesium deficiency symptoms, including seizures. ... At this point, I think the 40 ng/mL range of 25-OH D is probably quite sufficient and only take Vitamin D if you are also taking magnesium. ... Medicine is about taking big guns and shooting them off indiscriminately. For them, Vitamin D is the new calcium and they will promote it very widely and wait a few decades for the fall out. As I said in my March 10, 2013 blog, I don’t want to wake up in 10-20 years and find out we made a huge mistake in overdosing people with Vitamin D, just like we did with calcium.
and again, from Kerri Knox RN in 2010
Know the Importance of Taking Enough Magnesium with Your Vitamin D
http://www.naturalnews.com/029195_magne ... min_D.html
Such a huge number of people have subtle magnesium deficiency that some researchers and doctors are calling magnesium deficiency an epidemic, and anyone with even a mild or 'subclinical' magnesium deficiency will have this deficiency amplified when Vitamin D is taken. This is creating some uncomfortable 'Side Effects of Vitamin D' that are actually symptoms of an induced magnesium
Magnesium Deficiency Reduces Effectiveness of Vitamin D in the Prevention of Disease, According to Magnesium Expert Dr. Carolyn Dean, MD, ND (2011)
http://www.prnewswire.com/news-releases ... 05004.html
the effectiveness and benefits of vitamin D are greatly undermined in the absence of adequate levels of magnesium in the body. Magnesium acts with and is essential to the activity of vitamin D, and yet most Americans do not get their recommended daily allowance (RDA) of this important mineral. ... Dr. John Cannell, Executive Director of the nonprofit Vitamin D Council, concurs with Dr. Dean's findings, recognizing the importance of magnesium as a nutrient that is required for proper vitamin D metabolism, while additionally citing several studies that illustrate this point.
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Affordable steps for pwMS

Postby MarkW » Wed Apr 23, 2014 12:29 pm

THX1138 wrote:Based on my own Negative experience with Vitamin/Hormone D, and the fact that D uses up magnesium (something that most are low in), It seems inadvisable to recommend taking large amounts (more than 2,000 IU).
A much better solution seems to be to correct levels of cofactors that help to raise D levels, then supplement, if needed, with D.


I am sorry that you had a magnesium problem THX1138. The overall evidence does not show that taking 5,000IU/day to have adverse effects for the majority of the population. I have not seen published data which shows your experience occurs more often than 1 in 100 people. I realise that the big picture is not comforting in your personal experience. However, I am trying to show pwMS how important their D3 blood level is. (Not the quantity of D3 taken). It would be helpful if you posted your D3 and Mg levels, so that we could all learn from your experience.
I am open to advising pwMS to take a water soluble Mg salt alongside their Vit D3. The issue is that no one is willing to say what the safe product, formulation and dose should be. Testing Mg levels needs an expensive test (see Muse's posts), which make it a non starter for most pwMS in UK.
My aim with Vit D3 is simple:
- Offer advice which is achievable for pwMS. Take 5,000IU/day and getting D3 blood levels checked before starting and after 3 months is affordable for most pwMS in UK.
MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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Vit D3. FIRST SMALL STEP for pwMS

Postby MarkW » Wed Apr 23, 2014 12:48 pm

Squeakycat wrote: "The biggest problem for pwMS is low vitamin D3 not magnesium or any another mineral. The scientific evidence shows this".
I agree with you Ed and from my analysis the evidence shows our conclusion. However, Jimmylegs disagrees with us."

jimmylegs wrote:
emphatically, yes. about 6 years ago i would have been right on the same page, but no longer. but, that's just me. (or not..!):


Ed and I say Vitamin D3 levels are more important for most pwMS than magnesium levels. If cost is not a problem for you get tested for D3 and co-factors.
Otherwise, spending a few pence a day on vitamin D3 is my recommendation. About 50 pages of this thread given background as to why.
Also read Cheers blog on vein health as vit D3 is a part of this and important before and after CCSVI.

MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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A piece in the jig-saw?

Postby MarkW » Wed Apr 23, 2014 1:04 pm

NZer1 wrote:An interesting approach to understanding Vit D and MS would be use the episodic or TM (transverse Myelitis of the brain) form of MS and test regularly to establish if the relapse faze is the reason that Vit D is required or if the process of having a relapse uses hi amounts of Vit D. Many diseases draw high amounts of Vit D either by the cause of the disease or by the healing.

To be absolutely certain of the importance of vitamin D3 to pwMS will taken very large population scale studies. I use the many available studies to arrive a very probable conclusion. Each pwMS has to decide do they act now with probable results or wait for 10-20 years (?) for certainty.
The study you suggest Nigel could be interesting but would not prove (no doubts) the case for vit D3 or not. In Prof Hayes's protocol a pulse of Calcitriol with D3 seems to provoke the body to reduce a relapse. Maybe it is part of the same story?????
MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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Re: Vit D3>125nmol/L min in blood. FIRST SMALL STEP for pwMS

Postby Squeakycat » Wed Apr 23, 2014 1:26 pm

I think we can all agree that calcium, magnesium, zinc and copper are co-factors of vitamin D and as such merit consideration.

Given this, I would think it worthwhile to test whether there are deficiencies and whether correcting them changes clinical outcomes as a part of a trial of calcitriol + D3.

So, J-Legs, is there a single pill that provides the appropriate levels in the appropriate form that could be used in a trial as well as by those currently testing this protocol outside a clinical trial?

The other question is how consistent are labs in ascertaining these values?
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Re: Vit D3>125nmol/L min in blood. FIRST SMALL STEP for pwMS

Postby jimmylegs » Wed Apr 23, 2014 1:30 pm

Testing Mg levels needs an expensive test (see Muse's posts)
pshaw. muse's assertions re testing are based on research that relies on treating existing serum mag ranges as valid. which we (via the World Health Organization and others such as Ismail et al 2010) know perfectly well to be flawed.

a serum test can be quite informative and is not necessarily expensive, even when not covered by insurance:
http://www.lef.org/Vitamins-Supplements ... -Test.html
even in the UK (where private testing is indeed outlandishly priced), the NHS *should* cover a test - especially where patients are taking vit D3 (and more especially so if they are doing so under proper medical supervision). and as outlined above, there are easy strategies when testing is not practicable.

The issue is that no one is willing to say what the safe product, formulation and dose should be.
i agree it would be really nice if someone, anyone, would recommend daily amounts, whether any extra might be beneficial given WHO trepidation about current.. RDAs.. suggest whether food or supplements were preferable, and where supplements are concerned, specifically what form or forms and delivery methods might be preferable, whether organic or inorganic forms were best, etc. alas, we seem to be doomed to ignorance!
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Re: Vit D3>125nmol/L min in blood. FIRST SMALL STEP for pwMS

Postby jimmylegs » Wed Apr 23, 2014 1:39 pm

I would think it worthwhile to test whether there are deficiencies
agree!
The relationship between magnesium and calciotropic hormones. (1995)
http://www.ncbi.nlm.nih.gov/pubmed/7669510
Abstract
There is an important functional link between magnesium and calciotropic hormones. PTH stimulates magnesium reabsorption in the renal tubule, absorption in the gut and release of the ion from bone. Magnesium on the other hand is essential for the normal function of the parathyroid glands, metabolism of vitamin D and adequate sensitivity of target tissues to PTH and active vitamin D metabolites. Magnesium deficit is usually associated with hypoparathyroidism, low production of active vitamin D metabolites, in particular 1,25(OH)2 vitamin D3 and resistance to PTH and vitamin D. On the contrary, magnesium excess, similar to calcium, inhibits PTH secretion. Bone metabolism is impaired under positive as well as under negative magnesium balance. Because of the great importance of magnesium in the regulation of calcium homoeostasis, appropriate attention should be paid to the early diagnosis and treatment of magnesium imbalance.
and whether correcting them changes clinical outcomes as a part of a trial of calcitriol + D3
if we're assuming that 25(OH)vitD3 and 1,25(OH)2vitD3 are beneficial, then i'm not sure how correcting magnesium deficit could fail to do anything other than reduce the supplemental requirement for vitamin d metabolites.a
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Re: Vit D3>125nmol/L min in blood. FIRST SMALL STEP for pwMS

Postby NZer1 » Wed Apr 23, 2014 1:45 pm

If the basic diet is providing vits and mins in bio-available forms why are we needing supplements?

How many times have treatments or concepts of what is going to help PwMS or any disease created imbalances and extra problems and side effects.

Start from scratch like Swank, Wahls and Jelinek do and then after time say 3-5 years of 'correct' diet have tests rather than assume that the test results of someone who has been using eg Vit D or rituxan or PTA for CCSVI treatments in reason time will indicate a problem in disease accumulation.

We are assuming that the test results from serum tests taken today are telling us the history and issues of a disease that takes decades to establish.

Vit D3 serum levels fluctuate over weeks and calcitriol levels change in hours so how are they going to be the drivers of disease? They 'may' be able to adjust symptom expression for short periods of time, but not progression!!
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Re: Vit D3>125nmol/L min in blood. FIRST SMALL STEP for pwMS

Postby jimmylegs » Wed Apr 23, 2014 1:58 pm

I think we can all agree that calcium, magnesium, zinc and copper are co-factors of vitamin D and as such merit consideration.
cofactors absolutely merit consideration.
Given this, I would think it worthwhile to test whether there are deficiencies
agree. either that, or calculate food intake in comparison to RDAs and recommendations for PwMS.
So, J-Legs, is there a single pill that provides the appropriate levels in the appropriate form that could be used in a trial as well as by those currently testing this protocol outside a clinical trial?
yes! very specific food requirements.
The other question is how consistent are labs in ascertaining these values?
they're great. we've established for magnesium as well as zinc (and copper for that matter) that serum results are all normal, and that the existing ranges suck, and that serum values need to be in the high normal range. on the public health side, we know people are getting sick because they don't eat properly, while on the medical side, even when we bother to test the right things, the test ranges and results don't reflect the *known* problem. and hence there is no red flag for the doc, no food advice to the patient, everything's always fine, here's your prescription.
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Re: Vit D3>125nmol/L min in blood. FIRST SMALL STEP for pwMS

Postby jimmylegs » Wed Apr 23, 2014 2:03 pm

If the basic diet is providing vits and mins in bio-available forms why are we needing supplements?
because conventional agricultural practices mess with the nutrient distribution in crops, the RDAs are low, people aren't trained how to meet them anyway, and when anyone bothers to test before writing a prescription, the result is normal. people don't understand statistics, don't look up WHO literature to examine the source of that 'normal' range, and so we wander off merrily trusting our lab work and continuing to stick to the routines that make us sick.

all that said, daily amounts are for maintaining health. when you're dealing with chronic depletion, a therapeutic supplemental regimen can definitely help whip things back into shape far more quickly than diet alone
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Re: Vit D3>125nmol/L min in blood. FIRST SMALL STEP for pwMS

Postby NZer1 » Wed Apr 23, 2014 2:37 pm

jimmylegs wrote:
If the basic diet is providing vits and mins in bio-available forms why are we needing supplements?
because conventional agricultural practices mess with the nutrient distribution in crops, the RDAs are low, people aren't trained how to meet them anyway, and when anyone bothers to test before writing a prescription, the result is normal. people don't understand statistics, don't look up WHO literature to examine the source of that 'normal' range, and so we wander off merrily trusting our lab work and continuing to stick to the routines that make us sick.


So are you saying that improving diet is going to be necessary and then retesting after 'time' so see what the 'real' situation is before considering the pill popping approach?

It seems to me that as soon as you introduce either supplements and even move so, 'drugs', the diet has to be considered as a cause and that chemical interventions are going to mask the base dysfunction and also cause symptomatic side effects?

Diet analysis and diet correction must be the way forward surely?

There will of course be a time lag because of the disruption to standard body chemical functions and the body systems will have adapted to survive the diet imbalances. So diet isn't instant and not as trendy?

I get the feeling because there a time lag for the body to recover or normalize, that diet is often ruled out and drugs are 'said' to be 'better' because of there quicker responses BUT the side effects are often cascading into new territory of 'dis-ease'?

So adding Vit D by supplement isn't actually generating good health, rather delaying the progression of bad health and potentially a larger blow out in time?
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Re: Vit D3>125nmol/L min in blood. FIRST SMALL STEP for pwMS

Postby jimmylegs » Wed Apr 23, 2014 2:57 pm

as i've stated repeatedly elsewhere, addressing the known nutrient deficits seen in ms patients should be a priority, and diet should be the foundation for any effort to correct deficits identified. supplements should be used with caution and only to top up best dietary efforts. i think it's very prudent to test early to determine how serious a person's nutritional situation is, and whether immediate therapeutic supplementation is warranted.
i definitely think drug intervention options should be evaluated AFTER optimizing nutrient status. and i think using single nutrients in the way that we use isolated pharmaceuticals is asking for trouble. i definitely think FAR more attention needs to be paid to basic dietary requirements and the fatal disconnect between nutrient recommendations and nutrient status testing.
in general, it's a matter of education. there are far more private sector dollars spent on promoting drugs and empty calories, than there are on optimizing nutrients from whole foods.
yes, there will be a time lag associated with diet only and hence there is a place for short term therapeutic nutritional supplementation. i don't think adding vit d supplement is a problem as long as it's done with careful attention to the rest of a very complex system.
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Re: Vit D3>125nmol/L min in blood. FIRST SMALL STEP for pwMS

Postby muse » Thu Apr 24, 2014 2:50 am

jimmylegs wrote:
Testing Mg levels needs an expensive test (see Muse's posts)
pshaw. muse's assertions re testing are based on research that relies on treating existing serum mag ranges as valid. which we (via the World Health Organization and others such as Ismail et al 2010) know perfectly well to be flawed.

a serum test can be quite informative and is not necessarily expensive, even when not covered by insurance:
http://www.lef.org/Vitamins-Supplements ... -Test.html
even in the UK (where private testing is indeed outlandishly priced), the NHS *should* cover a test - especially where patients are taking vit D3 (and more especially so if they are doing so under proper medical supervision). and as outlined above, there are easy strategies when testing is not practicable.

The issue is that no one is willing to say what the safe product, formulation and dose should be.
i agree it would be really nice if someone, anyone, would recommend daily amounts, whether any extra might be beneficial given WHO trepidation about current.. RDAs.. suggest whether food or supplements were preferable, and where supplements are concerned, specifically what form or forms and delivery methods might be preferable, whether organic or inorganic forms were best, etc. alas, we seem to be doomed to ignorance!


When and where have I written serum Mg- tests have any worth? This test is beyond worthless! Sometimes Mg serum laboratory values
even come back with far to high Mg figures, which is called a med. PARADOX because the body’s blood serum was already so extremly low and for that reason the body had to do EVERYTHING to deplete the mineral from your body tissue (muscles, brain, bones etc.) and release it in the bloodstream (btw., you can find only 1% of the total Mg-amount in your blood stream the rest is hidden in the body tissue!) to keep vital body functions stable and to avoid e.g. a heart attack etc.. That’s why Dr. Carolyn Dean and other physicians who have knowledge in biochemistry are recommending a Magnesium–RBC (blood tissue/red blood cell) or a HTMA test and NOT a blood serum test!
Btw. the RBC test is pretty cheap (~$50 in the USA, ~$30 in NZ/paid by insurance, ~$50 in AU/paid by insurance and a HTMA [hair tissue mineral test] ~$180 [USA/AU] including interpretation) and I never did argue the converse either!

I starting my mantra again: “Magnesium deficiency causes “Vitamin”-D & Insulin resistance***Magnesium deficiency causes “Vitamin”-D & Insulin resistance*** Magnesium deficiency causes “Vitamin”-D & Insulin resistance*** Magnesium deficiency causes...*** and not the other way around!

You can sit 24h a day, 365 days a year naked in the sun but as long as you are deficient in Magnesium you will be resistant in “Vitamin”-D absorption as well and for that reason you will be deficient in Hormone-D. Period. This is VERY old knowledge/pure research in biochemistry and not a opinion of Arne K.!

I wrote some notes and collected links to research regarding the topic. Feel free to have a look at my FB-page. The notes are public. I don’t want spam this website/this thread. https://www.facebook.com/arne.kaminsky/notes
"MS" doesn't exist! - CCSVI dx Nov.2009, 1. angio LVJ & RVJ June 2010, 2. angio RVJ April 2011, January 2012 2. restenosis, reversed after ~1 year intake of high dosage Magnesium only. ThisIsCCSVIinMS: http://tinyurl.com/nwy5x58
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Re: Vit D3>125nmol/L min in blood. FIRST SMALL STEP for pwMS

Postby jimmylegs » Thu Apr 24, 2014 3:56 am

muse, nobody's saying you said the serum tests are good. i'm commenting on why the test is perceived to be bad and why it's actually not terrible in and of itself - that it's the way the ranges are set and interpreted that needs improvement.

serum mag is a useful marker regardless of overall distribution. mag only gets into (and out of) all that other tissue via blood, after all. and if you can see that the serum level is not at least .95, you know there's a problem, regardless of whether some lab set the lower cutoff at .65 or some other silly number.

Bone Mineral Density, Serum Albumin and Serum Magnesium
http://www.tandfonline.com/doi/abs/10.1 ... 1jqz_ldWt8
Evidence is presented of low magnesium and albumin serum levels, especially in women with low bone density, as well as of low calcium and trace minerals.

Magnesium prevents phosphate-induced calcification in human aortic vascular smooth muscle cells
http://ndt.oxfordjournals.org/content/28/4/869.short
Recently, an inverse relationship between serum magnesium concentrations and [vascular calcification] VC has been reported. ... Increasing Mg2+ concentrations significantly reduced VC, improved cell viability and modulated secretion of VC markers during cell-mediated matrix mineralization clearly pointing to a cellular role for Mg2+

there's all kinds of research supporting your mantra, which has been detailed extensively in the pages of this thread. but as for the other way around, the relationship between mag and d is certainly not a one way street, and vit D *supplementation* most certainly can interfere with magnesium status.

i believe the research on fibro patients (who share low mag status with ms patients and a few other chronic disease sufferers) and their failure to synthesize vit D3 in sunlight is also included above.
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