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: FIRST STEP-Take Vitamin D3 Before & After De-Stenosis.

Postby Squeakycat » Sat Jan 05, 2013 8:39 am

EJC wrote:calcium it is then.

Anything else?

I would be inclined to buy a calcium that also has magnesium and zinc, though I can't find anything indicating they would be particularly useful as far as vitamin D in MS.
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Re: FIRST STEP-Take Vitamin D3 Before & After De-Stenosis.

Postby Squeakycat » Sat Jan 05, 2013 8:46 am

EJC wrote:calcium it is then.

Anything else?

Looks like there is some support for magnesium, at least in conjunction with CCSVI treatment.

To the extent that you can find a calcium citrate maleate supplement that contains magnesium and zinc, it would seem to make sense to go ahead and include that at least until there are further studies on co-factors. Might as well cover all the bases or I guess in your case, protect those wickets. :>)
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Re: FIRST STEP-Take Vitamin D3 Before & After De-Stenosis.

Postby NZer1 » Sat Jan 05, 2013 12:01 pm

Ed I understand the logic you are putting in here, the difference is that as Franz Schelling and others have found we have the added factor of hydraulicing blood flow.

If the hydraulic effect wasn't present then we would have a much simpler picture, or then again maybe that exists in other diseases, they haven't been looked at in this way before.

Therefore a concept layout;
The breach of the BBB is a 'primary' effect and we are looking for the causes.

The pumping effect (CCSVI/Reflux/back jets) that cause the breach of the BBB are a primary issue.
An infection that causes the breach of the BBB is also a primary effect.
The weakening of the BBB by for instance the 'Vit D' effect is also a primary effect.

Hereditary and Geographical effect is also required.

Diet, exercise, stress and smoking are possibly secondary compounding effects, rather than primary.


Naturally there will be many more factors that my Fog laden brain is not capable of recalling.

I will contact George Jelinek later and ask for some feed back/guidance on the Vit D/Calcium dilemma as well as some thoughts on the Aust study. If it hasn't been known by the Researchers then it is never too late to bring this to their attention. I have been knee capped many, many times in Life for 'interfering' so I am a little immune to 'reactions rather than responses'.

Regards,
Nigel
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Re: FIRST STEP-Take Vitamin D3 Before & After De-Stenosis.

Postby Squeakycat » Sat Jan 05, 2013 12:44 pm

NZer1 wrote:Ed I understand the logic you are putting in here, the difference is that as Franz Schelling and others have found we have the added factor of hydraulicing blood flow.

If the hydraulic effect wasn't present then we would have a much simpler picture, or then again maybe that exists in other diseases, they haven't been looked at in this way before.

Therefore a concept layout;
The breach of the BBB is a 'primary' effect and we are looking for the causes.

The pumping effect (CCSVI/Reflux/back jets) that cause the breach of the BBB are a primary issue.
An infection that causes the breach of the BBB is also a primary effect.
The weakening of the BBB by for instance the 'Vit D' effect is also a primary effect.

Hereditary and Geographical effect is also required.

Diet, exercise, stress and smoking are possibly secondary compounding effects, rather than primary.

As usual, Nigel, you covered a lot of territory here!

Not sure I understand Schelling's "hydraulic" effect. Is this the same as the turbulent flow that Zamboni says is involved, or some other issue?

If we accept, at least for the sake of argument that MS exists because of a breakdown in the blood brain barrier, then I think all the other pieces you mention fall into place quite nicely.

1. Vitamin D directs the final differentiation of veins so if the mother is vitamin D insufficient at this point in fetal development, we end up with malformed veins. There are missing veins. Hypoplastic veins. Stuck valves. All the result of the mother's vitamin D deficiency at a crucial point in development.

2. Vitamin D also manages the health of tissue it creates, in this case the endothelium so without adequate vitamin D, the body may well be unable to quickly repair damage to the blood brain barrier. The damage could come from constant, turbulent blood flow. From infectious agents such as EBV, from Dr. Wheldon's c. pneumonia, from smoking, from alcohol, from obesity, lack of exercise. All of these things could damage the blood brain barrier.

But only one thing manages the health of the blood brain barrier, vitamin D.

3. Both the hereditary effect and geographical effect are well explained and linked to vitamin D. The MHC/HLA genes implicated in MS are expressed by Vitamin D. There is a 2nd generation effect where if the grandmother is vitamin D deficient at the time of the birth of the mother, the grandchildren end up with induced vitamin D processing gene deficiencies. They are not inherited. The mother and father may well not have the same defect, nor the grandmother.

So you have latitude accounting for vitamin D deficiencies and some induced gene defects brought on by vitamin D deficiencies.

4. Perhaps the problems of turbulent blood flow causes damage over time that sets pwMS up for infections and it takes decades to reach a point where the barrier keeps breaking down.

Perhaps it is simply that we tend to have more vitamin D when we are younger and as that sufficiency decreases, we are left with less ability to cope with the ongoing onslaught on the BBB.

5. Once there is a breech in the BBB, all sorts of awful things start happening that injure nerves. The immune system can "over-react" and cause damage. The immune system evolved in a pretty hostile environment and may well have not down-regulated itself to the less threatening environment we face today. We don't know if demyelinated axons can be remyelinated. We don't know if the processes that get started when something that crosses the BBB will continue, even if we are able to patch up the leak.

Lots of questions still to be answered.
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Re: FIRST STEP-Take Vitamin D3 Before & After De-Stenosis.

Postby NZer1 » Sat Jan 05, 2013 5:51 pm

Well written Ed, take your books to the top of the class!

"5. Once there is a breech in the BBB, all sorts of awful things start happening that injure nerves. The immune system can "over-react" and cause damage. The immune system evolved in a pretty hostile environment and may well have not down-regulated itself to the less threatening environment we face today. We don't know if demyelinated axons can be remyelinated. We don't know if the processes that get started when something that crosses the BBB will continue, even if we are able to patch up the leak."

I think most of this has partial answers. The MRI timeframe studies show that the Lesions change monthly in MS and the non enhancing Lesions can 'heal' over time. I think that is an indication going two ways, a that the BBB leakage changes over time and that the re-myelination can occur if the BBB seals itself. It appears that the permanent damage is due to ongoing leakage in certain regions of the Brain.

Franz Schelling has spoken of evidence that the back jets cause many, many small lesions that are not visible by MRI only by Autopsy. That gave the impression of the transient nature and flairs in MS.

The slow flow and the hypoxia is the other factor associated with the 'MS' symptoms that has to be factored in. The studies show that de-generative diseases such as MS have this and Dyautonomia may be the symptom expression that Mike Arata has observed.

So the combinations that are filling out this list are very much covering the symptoms and the study results. ;)

Thanks Ed,
Nigel
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Re: FIRST STEP-Take Vitamin D3 Before & After De-Stenosis.

Postby jimmylegs » Sat Jan 05, 2013 7:56 pm

yes. magnesium and zinc.

if there isn't magnesium in the mix, you could create a dangerous magnesium deficit at daily d3 doses of 10,000IU. i've done it.. it's. not. fun.

personally, optimizing zinc status tripled my dose response to d3. so just be aware that if zinc is not optimized, you could be wasting 2/3rds of potential absorption from of each 10,000IU dose of vit d3.

hth
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Re: FIRST STEP-Take Vitamin D3 Before & After De-Stenosis.

Postby NZer1 » Sat Jan 05, 2013 11:29 pm

jimmylegs is there a test and Specialist that we should be having and seeing to check the status of all our minerals and Vits so that we can be aware of what is happening and what may need attention.

We all are guilty of hearing X mineral or Vit does XYZ benefit and popping some.

I am concerned that we end up creating more issues in another direction because we create another imbalance in our already unbalanced systems.

For myself on the CPn protocol I am getting concerned that I am creating an imbalance with the die off and endo-toxin issues.

Hope this makes sense,
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Re: FIRST STEP-Take Vitamin D3 Before & After De-Stenosis.

Postby Squeakycat » Sun Jan 06, 2013 6:46 am

NZer1 wrote: "From; CCSVI in New Zealand (Me)
The hypothalamic-pituitary-adrenal axis and the sympathetic nervous system
http://www.envita.com/lyme-disease/fina ... e-disease/
Idiopathic disease is defined as one that develops without any apparent or known causes. That is the term used for fibromyalgia, autoimmune diseases, including Lupus and Chronic Fatigue Syndrome.

From; CCSVI in New Zealand (Me again!)
"Sounds promising!

(Medical Xpress)—Research led by Queen Mary, University of London, has opened up the possibility that drug therapies may one day be able to restore the integrity of the blood-brain barrier, potentially slowing or even reversing the progression of diseases like multiple sclerosis (MS). The study, funded by the Wellcome Trust, is published in Proceedings of the National Academy of Sciences.

In both of these articles, they overlook a key factor: vitamin D. Vitamin D is an integral part of the HLA axis so if people are deficient, that alone could account for the dysregulation that occurs.

And in the case of the BBB, it is Vitamin D that expresses the ANAX1 gene so again, if there is a deficiency of vitamin D, that could account for what is happening. Of course, people who are developing proprietary human proteins probably don't want to look into something as simple as that.

Ed
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Good Vit D3 level in blood for pwMS

Postby MarkW » Sun Jan 06, 2013 11:24 am

Squeakycat wrote: We have no idea how much vitamin D is needed by someone with MS or how that varies with the course of the disease. It could turn out to be very little, or it could turn out to be a lot. It would be nice if the different trials tested this. It seems rather easy to test.


Hello Ed,
I referenced a paper which showed that pwMS with higher D3 level had fewer relapses. This reached a plateau at 110 nmol/L in blood, so I recommend pwMS target a level of 125nmol/L. The number of relapses does not correlate closely with progression of MS but most pwMS I know welcome fewer relapses.
We need to keep in mind that we are dealing with a supplement which costs much less than 50 USD a year to take. I do not expect to have conclusive research of Vit D3 blood levels needed in pwMS, nor to understand the mode of action of Vit D3. For CCSVI syndrome and Vit D3 levels I recommend we adopt the approach of treating symptoms (stenosed veins and low D3). Medicine and Pharmacy have done this for centuries, it is only in recent years that knowledge of drug actions on humans has emerged.
For me a crucial fact is that prior to the Industrial Revolution MS was unheard of. For me, treating stenosed veins and increasing Vit D3 levels are reasonable actions for MS, not provable treatments.
Kind regards,
MarkW
Last edited by MarkW on Sun Jan 06, 2013 11:39 am, edited 1 time in total.
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: Evidence for Vitamin D3 Before & After De-Stenosis.

Postby MarkW » Sun Jan 06, 2013 11:34 am

From earlier (p12) in the thread.....................MarkW

MarkW wrote:Ther Adv Neurol Disord. 2012 Jul;5(4):187-98.
Relationship between 25-OH-D serum level and relapse rate in multiple sclerosis patients before and after vitamin D supplementation.
Pierrot-Deseilligny C, Rivaud-Péchoux S, Clerson P, de Paz R, Souberbielle JC.
Service de Neurologie 1, Hôpital de la Salpêtrière, Assistance Publique-Hôpitaux de Paris, Université Pierre et Marie Curie (Paris VI), Paris, France.
Abstract
BACKGROUND:
Vitamin D could play a protective role in multiple sclerosis.
METHODS:
In an observational, uncontrolled study, vitamin D3 supplementation (3010 IU/day on average) was given to 156 consecutive patients with relapsing-remitting multiple sclerosis, under first-line immunomodulatory therapy and with initial 25-OH-D serum level lower than 100 nmol/l (40 ng/ml). Relapses were determined for 29.1 ± 8.4 months during vitamin D and 29.8 ± 10.1 months before supplementation. The 25-OH-D level was measured before supplementation and several times during supplementation. The incidence rate of relapses before and during supplementation was estimated using negative binomial regression models with follow-up durations as offset terms. The incidence rate and incidence rate ratio of relapses at various 25-OH-D levels were also calculated using negative binomial regression models.
RESULTS:
In 76 patients, immunomodulatory therapy preceded vitamin D supplementation (by 4.2 ± 2.7 years) and in 80 patients both treatments were started simultaneously. Under supplementation, the 25-OH-D level increased from 49 ± 22 nmol/l to 110 ± 26 nmol/l on average. Pooling data collected before and during supplementation, we found a significant strong inverse relationship between the relapse incidence rate and the 25-OH-D level (p < 0.0001), suggesting that vitamin D did indeed influence the relapse rate. Results of univariate, bivariate and multivariate analyses were analogous: in the multivariate model adjusted for age, disease duration and previous use of immunomodulatory therapy, every 10 nmol increase in 25-OH-D level was associated with a reduction in the relapse incidence rate of 13.7%. Dividing iteratively the population made up of pooled periods into two subgroups according to the 25-OH-D levels, the relapse incidence rate ratio decreased as the 25-OH-D level increased up to 110 nmol/l, but a plateau effect was observed beyond this limit.
CONCLUSION:
Further studies are warranted for accurate quantification of the vitamin D effect.
PMID: 22783368 [PubMed]
PMCID: PMC3388527
Free PMC Article http://www.ncbi.nlm.nih.gov/pmc/article ... ool=pubmed
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: FIRST STEP-Take Vitamin D3 Before & After De-Stenosis.

Postby NZer1 » Sun Jan 06, 2013 11:44 am

Hi everyone,
the discussion is getting interesting as it defines the finer points.

One thing that I have said for years is that if we keep using the failing models of MS knowledge then we are going to follow the past.

Relapses are not MS, they are a co-incidence of having MS!

MRI findings are not an indication of disease activity or progression or for that matter severity!

We need to burn the box of thought that has been used to distract thinking!

With Vit D we are stabbing in the dark when we assume that the current or flat rates of testing Vit D are the best method of measure and the same (best measure) for the method of increasing bio-available Vit D that performs ALL the Vit D tasks that are vital in MS.

I am guessing when I say that for Vit D to be important in such a broad spectrum of tasks that it will be combining with other molecules to perform the range of functions.

We in the Western World Model of thinking and Medical World assume too much and miss the importance of Synergenic processes. Yes Vit D comes up in the trail of combinations involved in the functions of many regions such as the Thalamus etc, but that does not mean that the timing of insufficiency happening or the combined cell action enabling a function or task is the issue.

I believe Vit D is a part of the picture rather than the whole picture.

We need more input from Specialists to push this discussion ahead! George, Terry, Ashton where are you guys!

Regards,
Nigel
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Remyelination in MS

Postby MarkW » Sun Jan 06, 2013 12:04 pm

Squeakycat wrote:If we accept, at least for the sake of argument that MS exists because of a breakdown in the blood brain barrier, then I think all the other pieces you mention fall into place quite nicely.
1. Vitamin D directs the final differentiation of veins so if the mother is vitamin D insufficient at this point in fetal development, we end up with malformed veins. There are missing veins. Hypoplastic veins. Stuck valves. All the result of the mother's vitamin D deficiency at a crucial point in development.
2. Vitamin D also manages the health of tissue it creates, in this case the endothelium so without adequate vitamin D, the body may well be unable to quickly repair damage to the blood brain barrier. The damage could come from constant, turbulent blood flow. From infectious agents such as EBV, from Dr. Wheldon's c. pneumonia, from smoking, from alcohol, from obesity, lack of exercise. All of these things could damage the blood brain barrier.
But only one thing manages the health of the blood brain barrier, vitamin D.
3. Both the hereditary effect and geographical effect are well explained and linked to vitamin D. The MHC/HLA genes implicated in MS are expressed by Vitamin D. There is a 2nd generation effect where if the grandmother is vitamin D deficient at the time of the birth of the mother, the grandchildren end up with induced vitamin D processing gene deficiencies. They are not inherited. The mother and father may well not have the same defect, nor the grandmother.
So you have latitude accounting for vitamin D deficiencies and some induced gene defects brought on by vitamin D deficiencies.
4. Perhaps the problems of turbulent blood flow causes damage over time that sets pwMS up for infections and it takes decades to reach a point where the barrier keeps breaking down.
Perhaps it is simply that we tend to have more vitamin D when we are younger and as that sufficiency decreases, we are left with less ability to cope with the ongoing onslaught on the BBB.
5. Once there is a breech in the BBB, all sorts of awful things start happening that injure nerves. The immune system can "over-react" and cause damage. The immune system evolved in a pretty hostile environment and may well have not down-regulated itself to the less threatening environment we face today. We don't know if demyelinated axons can be remyelinated. We don't know if the processes that get started when something that crosses the BBB will continue, even if we are able to patch up the leak.
Lots of questions still to be answered.

Interesting thoughts Ed,
I cannot forget that pwMS have at least 57 different genes/alelles compared to the average population. So I start from this point. For me, epi-genetic changes on some of these genes produced by environmental factors (including low D3 levels) need to be considered. This moves us into a new paradiem.
One point of understanding, demyelinated nerves can be remyelinated in healthy patients, probably less in pwMS.
Kind regards,
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: FIRST STEP-Take Vitamin D3 Before & After De-Stenosis.

Postby jimmylegs » Sun Jan 06, 2013 5:37 pm

nz my regimen thread has all the various tests and target levels that i have managed to put together to date. post one page one. under the bloodwork section. i don't use a specialist b/c my family doc is great at providing me with the recommendations i need. using this method, my doctor visits and most of my tests are covered under provincial health insurance. if i couldn't get my doc to help me, my other option would be to pay to see a naturopath and then pay for the various blood tests. in the states patients can just go to private testing providers and order their requisition online at sites like this: https://www.lef.org/BloodTest/index.htm
then you just take the requisition to the lab and get the results. i wish this kind of service was available EVERYWHERE. i would be in business tomorrow.
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
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Re: FIRST STEP-Take Vitamin D3 Before & After De-Stenosis.

Postby jimmylegs » Sun Jan 06, 2013 5:54 pm

also refer to the announcement in the ccsvi forum - step 1: nutrition. intro info plus links to more detail in the nutrition regimen post i mentioned above.
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
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Re: Good Vit D3 level in blood for pwMS

Postby Squeakycat » Sun Jan 06, 2013 6:29 pm

MarkW wrote:Hello Ed,
I referenced a paper which showed that pwMS with higher D3 level had fewer relapses. This reached a plateau at 110 mmol/L in blood, so I recommend pwMS target a level of 125mmol/L. The number of relapses does not correlate closely with progression of MS but most pwMS I know welcome fewer relapses.

We need to keep in mind that we are dealing with a supplement which costs much less than 50 USD a year to take. I do not expect to have conclusive research of Vit D3 blood levels needed in pwMS, nor to understand the mode of action of Vit D3. For CCSVI syndrome and Vit D3 levels I recommend we adopt the approach of treating symptoms (stenosed veins and low D3). Medicine and Pharmacy have done this for centuries, it is only in recent years that knowledge of drug actions on humans has emerged.

For me a crucial fact is that prior to the Industrial Revolution MS was unheard of. For me, treating stenosed veins and increasing Vit D3 levels are reasonable actions for MS, not provable treatments.
Kind regards,
MarkW

Agree with you completely, 100%.

I too think the >125 nmol/L is a good goal to set absent further research to define this more scientifically.

The risks involved in vitamin D supplementation are well known and easily managed so there is simply no reason not to do this. But the risks are substantial so it must be done carefully. Pulse dosing is a proven way of avoiding hypercalcemia with high doses of vitamin D.

I think there is sufficient scientific evidence that vitamin D will be more effective if taken with calcium. There is some scientific support for the need for magnesium and less support for zinc as co-factors in the context of MS. Given that there are calcium supplements which provide all three, there is no reason not to use a supplement that provides this.

We need to be careful as far as expectations. Vitamin D is not a panacea. You can't expect pwMS to be jumping out of their wheelchairs and entering the marathon after taking vitamin D. The principle, short term benefit should come from improving the body's ability to maintain the integrity of the blood brain barrier.

Ultimately, this should be measurable in terms of reduced lesion loads and fewer relapses. It would be nice if this has other, measurably benefits such as those commonly seen in CCSVI treatment. I don't think there is evidence of this yet, however.

Since vitamin D processing gene deficiencies are intimately tied to problems caused by vitamin D insufficiencies, we need to find ways to identify and compensate for this.

While the quantity of research now being done is literally, overwhelming, I think patients are going to have to drive this since so many of the current studies have clear design flaws and are not addressing the right questions.

We are in complete agreement on what should be done!

Ed
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