This Is MS Multiple Sclerosis Community: Knowledge & Support

Hello ThisIsMA,
I am sorry that you are not able to get de-stenosis for CCSVI syndrome. There are many next steps for someone in your position. After getting your D3 level above 125nmol/L, I suggest you adopt the vein health program given by Cheerleader.
Have you tried removing possible inflammatory agents from your diet? The numerous diets are worth looking at and trying to see if lactose, gluten etc are an irritant for you. Also do not rule out interferon completely. Interferon seems to work for about 1 in 3 pwMS but there is no test to see if you are one in three or two in three.
Taking the first step with D3 is important. Thanks for you support on this thread.
Kind regards,
MarkW

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Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 10 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

@mark i suspect you're putting an unfair interpretation on my words when misquoting me re 'nuts'
i was actually referring to levels remaining low after so long megadosing at 6000 IU.
pardon me if your emphasis on 'nuts' was unrelated.

as for the bit player piece nigel, it certainly is and we certainly need to consider a far more complex picture. whether that picture needs to include ccsvi for everyone is still a wide open question imho. i tend to think of the surgery route as the idea that falls into the quick fix culture, whereas pills can be viewed in two ways -when they are drugs, they are bandages focused on one piece of a massively complex system. when nutrients, they are replacements for long overdue nutrient inputs. this ties back into a liver discussion i'm currently having on my regimen thread:
regimens-f22/topic2489-525.html#p206536

@tiMA, thanks for your concern. lots of pain and i don't seem to have a ligament connecting my femur and tibia any more, but no broken bones. knee mri pending :S

as for diet and inflammation, if anyone wants to see examples of how to calculate IF factors for your daily dietary food intakes, i have done a bunch of sample work in the past (2011) which can be reviewed here:
regimens-f22/topic2489-255.html#p170052
regimens-f22/topic2489-210.html#p155699
the calculation data are obtained from www.nutritiondata.com (same as in my site signature)

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my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com

MarkW said:

And to avoid confusion for people in the United States (and any other countries that use the ng/ml system instead of nmol/L to measure vitamin D levels):

I believe that 125 nmol/L is roughly the same as 50 ng/ml. Can anyone verify that for me?

I know some time ago I looked up how to translate between these two systems of measurement and came to the conclusion that nmol/L should be divided by 2.5 to get ng/ml. That may not be exact but I think its pretty close. On the other hand I'm not a medical professional and I do have some MS related cognitive issues, so I'd love it if someone can verify that for me.

It can be difficult trying to decipher these things if you live in a country such as the USA where tests results for vitamin D come back with an entirely different number that looks really low if you don't realize that they are using a different system of measurement!

Of course my own initial Vitamin D test results came back really low even after I translated them by multiplying them by 2.5 to get the equivalent nmol/L level.

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DX 6-09 RRMS

the Step 1: Nutrition announcement at the top of the CCSVI area includes a link to a useful conversion resource.

chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic17004.html

similarly it has been provided in the ms nutrition summary post, under the bloodwork section
regimens-f22/topic2489.html

if you follow up on either of those, you will find detailed conversion info for many nutrients relevant to ms patients, and for vit d3 in particular, confirmation that 2.5 is basically close enough as a conversion factor.

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my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com

Oxford University MS Specialist wins an award for his work on how climate and diet leads to MS, which he views as a largely preventable disease. "Vitamin D exposure appears to be the main factor determining geographical risk” said Ebers
http://www.aan.com/press/index.cfm?fuse ... lease=1152
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"The researchers then looked for the rare gene variant in over 3,000 families of unaffected parents with a child with MS. They found 35 parents who carried one copy of this [CYP27B1 gene variant] along with one normal copy. In every one of these 35 cases, the child with MS had inherited the mutated version of the gene...On the very rare occasions when people inherit two copies of the CYP27B1 gene variant, they develop a genetic form of rickets (a disease caused by vitamin D deficiency). Norwegian collaborators found three such cases in the whole of Norway, and the researchers found that these three people all had MS as well"...helena webb
http://www.ox.ac.uk/media/news_releases ... 208_1.html
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Quote from Arne Kaminsky As I wrote at CCSVI Australia, that's my new Mantra: "...magnesium deficiency causes Vitamin D resistance - magnesium deficiency causes Vitamin D resistance - magnesium deficiency causes Vitamin D resistance..." The amount of sunshine is still the same as it was 10000 years ago but the amount of minerals in our soil, food isn't.
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Thanks to Helena Webb on fb for posting these on her site, another Australian making a big difference in the World
Nigel

i thrashed through this genetic tack a bit last july
three consecutive posts:
regimens-f22/topic2489-390.html#p194633
regimens-f22/topic2489-390.html#p194637
regimens-f22/topic2489-390.html#p194640

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my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com

There is some very interesting insights to genetics and their sources in Dr David Jernigans book on Lyme and of course some need to know insights on MS 'potential' cause factors due to the Body being a ripe environment to all the various jigsaw puzzle pieces. PLUS other factors regarding the jigsaw pieces and why they interlock in so many de-generative and 'auto-immune' diseases.
imo if people are wanting to speak on MS, read the book, there would be some very different searches for quality of Health and very different outcomes to all de-generative diseases outcomes!
http://www.amazon.com/Beating-Lyme-Dise ... 0967462339
I found and purchased an e-book at 'Lulu' but it seems to have deleted on their site?

Some more interesting info that gets over looked in MS and that is detoxing to enable the body to receive many of the Healthy changes in diet and Lifestyle, one page of interest to me was
http://www.mall-net.com/cooter/moly.html


Nigel

I was searching for some info on vitamin D and ran across this. Vitamin D can interact with some medications...

http://www.webmd.com/vitamins-supplemen ... ITAMIN%20D

Moderate Interaction Be cautious with this combination

* Aluminum interacts with VITAMIN D

Aluminum is found in most antacids. Vitamin D can increase how much aluminum the body absorbs. This interaction might be a problem for people with kidney disease. Take vitamin D two hours before, or four hours after antacids.

* Calcipotriene (Dovonex) interacts with VITAMIN D

Calcipotriene is a drug that is similar to vitamin D. Taking vitamin D along with calcipotriene (Dovonex) might increase the effects and side effects of calcipotriene (Dovonex). Avoid taking vitamin D supplements if you are taking calcipotriene (Dovonex).

* Digoxin (Lanoxin) interacts with VITAMIN D

Vitamin D helps your body absorb calcium. Calcium can affect the heart. Digoxin (Lanoxin) is used to help your heart beat stronger. Taking vitamin D along with digoxin (Lanoxin) might increase the effects of digoxin (Lanoxin) and lead to an irregular heartbeat. If you are taking digoxin (Lanoxin), talk to your doctor before taking vitamin D supplements.

* Diltiazem (Cardizem, Dilacor, Tiazac) interacts with VITAMIN D

Vitamin D helps your body absorb calcium. Calcium can affect your heart. Diltiazem (Cardizem, Dilacor, Tiazac) can also affect your heart. Taking large amounts of vitamin D along with diltiazem (Cardizem, Dilacor, Tiazac) might decrease the effectiveness of diltiazem.

* Verapamil (Calan, Covera, Isoptin, Verelan) interacts with VITAMIN D

Vitamin D helps your body absorb calcium. Calcium can affect the heart. Verapamil (Calan, Covera, Isoptin, Verelan) can also affect the heart. Do not take large amounts of vitamin D if you are taking verapamil (Calan, Covera, Isoptin, Verelan).

* Water pills (Thiazide diuretics) interacts with VITAMIN D

Vitamin D helps your body absorb calcium. Some "water pills" increase the amount of calcium in the body. Taking large amounts of vitamin D along with some "water pills" might cause to be too much calcium in the body. This could cause serious side effects including kidney problems.

Some of these "water pills" include chlorothiazide (Diuril), hydrochlorothiazide (HydroDIURIL, Esidrix), indapamide (Lozol), metolazone (Zaroxolyn), and chlorthalidone (Hygroton).


Minor Interaction Be watchful with this combination

* Cimetidine (Tagamet) interacts with VITAMIN D

The body changes vitamin D into a form that it can use. Cimetidine might decrease how well the body changes vitamin D. This might decrease how well vitamin D works. But this interaction probably isn't important for most people.

* Heparin interacts with VITAMIN D

Heparin slows blood clotting and can increase the risk of breaking a bone when used for a long period of time. People taking these medications should eat a diet rich in calcium and vitamin D.

* Low molecular weight heparins (LMWHS) interacts with VITAMIN D

Some medications called low molecular weight heparins can increase the risk of breaking a bone when used for a long periods of time. People taking these medications should eat a diet rich in calcium and vitamin D.

These drugs include enoxaparin (Lovenox), dalteparin (Fragmin), and tinzaparin (Innohep).

Thanks NHE, that reminded me that Vit D has other effects due to its importance in setting the apoptosis timing in all cells and that will be a multi-faceted 'risk' factor that will be near impossible to predict.
When some ABx are used there is a Vit D warning put on the label which relates to sunlight and skin rashes and aggravation of sensitive skin as well.
So I would say from this that cart-blanc Vit D supplementing may have risks for people such as PwMS because of the other medications used. For me I was in a situation where supplementing Vit D caused an increase in die off of pathogens, the resulting endo-toxin production and secondary porphyria was very debilitating.
My concern is that by picking one hormone and increasing it with the belief that because some very controlled studies have shown changes in a small snap shot of 'wellness' or quality of Life that assumptions will be made about the overall involvement in CCSVI or 'MS'.


Nigel

Nigel, step back. Don't push that alarm button just yet.

The body evolved to make use of things that were abundant in our environment, air, water, sunshine. As such, all of these play majors roles in the body which means that they interact with many things in our bodies.

If you look carefully at NHE's list, these are "warnings" of interactions to be taken into consideration with concomitant use of Vitamin D and other things, not strict contraindications to use.

As a general proposition, the dangers of having INADEQUATE levels of vitamin D are far greater than the dangers of taking reasonable levels of vitamin D.

The one, well documented and well known concern with high levels of vitamin D, those above 10,000 IU per day, is hypercalcemia and hyperphosphatemia. Unmanaged, it can be life-threatening. Managed, it is really of little concern since simply stopping vitamin D puts things right in a matter of a few days.

The other area of secondary concern is where there are problems, primarily with the kidneys and parathyroid glands because of their intimate involvement in calcium metabolism, high dose vitamin D supplementation needs to be much more carefully monitored and general is done with weekly pulse dosing rather than daily dosing.

I have over 20 cat years of experience of administering high dose vitamin D (roughly the human equivalent of 20,000 IU daily) to cats suffering from chronic kidney failure (CKD) with only two incidents where I had to stop dosing temporarily and then adjust the dose. The kitties were right as rain in a matter of days. The only other adjustment that was required was to switch them off calcium-based phosphate binders. Cats aren't people, but this experience seems to parallel that in humans with CKD who also take high-dose vitamin D to manage their calcium levels through control of parathyroid hormone (PTH).

Everyone should look at drug labels of everything they are taking to see if there are contraindicated drugs and deal with these accordingly. In most cases, this simply means changing the dose of one or the other. There are very few outright contraindications where the warning is to not use the drugs together in the case of vitamin D.

Hi Ed, I agree with the warning being a red herring, some times shock treatment makes people think about what is happening, sometimes it doesn't.

I have read on this from many angles. The thing I take away is that 'we' are very high users of Vit D, and that is why levels are low, rather than 'we' are not getting enough. 'We' get the same as the general public and yes it is not as high as it 'may' have been in History.

So we need to consider why?

Does it mean we need more pumped in or does it mean me need to look at what is going on to require a boost. Boosting Vit D doesn't give an indication of what is going on that involves Vit D consumption in large amounts.

Is it a disease process, is it a dysfunctional processing of Vit D, is it going to improve or change for the better adding one element a hormone, is there a combination that will benefit the patient more than only Vit D boosting, if Vit D is boosted will that mask any underlying issues that need more attention than Vit D alone? And so on!

All of the studies are inconclusive and they all say to test more. The testing stats are collecting a narrow guesswork of data for a set insight capture. What really is it that changed when supplemented and what if they looked at combinations that are needed to make Vit D bio available and then looked for all health pattern changes.

And of course as you say Ed, just take your medicine and smile, it ain't gunna kill yah!


Nigel

i beg pardon for the element of frustration in the following BUT..
for the millionth time, you can't absorb the d3 without enough zinc in your system.
for the billionth time, my absorption of d3 products MORE THAN TRIPLED after discovering and correcting zinc deficiency (which can and does exist within the 'normal' range)
for the zillionth time, i now take a fraction of the amount of supplemental vit d3 i used to take in early days, and can easily maintain great levels.

_________________
my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com

For only the second time, show me studies which indicate that zinc is needed to METABOLIZE vitamin D.

I realize it is critical in the use of vitamin D since zinc fingers play a crucial role in vitamin D receptors, but that has nothing to do directly with METABOLISM.

And I'm very happy that you are now able to "take a fraction of the amount of supplemental vit d3," but n=1 and your study wasn't placebo controlled, random, or double blind.

In your view of this, is zinc needed to absorb vitamin D from the gut, or to produce it in the skin, or metabolize it in the liver or kidneys, or transport it so it can reach organs where it is metabolized?

Where is it playing a role in METABOLIZING vitamin D?

I am pulling your chain, but I think these are valid questions. Peace.

laaame. YOU show ME the study that says what i say is NOT true. i expect the highest scientific rigor of course

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my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com

Enhancement of vitamin D3 effect on bone metabolism in weanling rats orally administered zinc sulphate
Abstract
The interaction of vitamin D3 and zinc on bone metabolism was investigated in the femur of weanling rats. Oral administration of vitamin D3 (1.0 μg/100 g body weight) did not cause any increase in the zinc accumulation in the femoral tissue following treatment with zinc sulphate (1.0 mg Zn/100 g). Administration of vitamin D3 or zinc produced significant increases the alkaline phosphatase activity and DNA content of the femoral diaphvsis but not of the epiphysis. The increase in alkaline phosphatase activity was enhanced additionally by simultaneous administration of vitamin D3 and zinc. Moreover, the increase in DNA content was enhanced markedly (about 4 times) by these treatments. At a dose of 0.5 μg of vitamin D3 per 100 g, DNA content was at the control level. This level was increased about 2 times by simultaneous administration of zinc (1.0 mg/100 g). The increase in alkaline phosphatase activity following simultaneous administration of vitamin D3 and zinc was significantly inhibited by treatment with cycloheximide, actinomycin D, or mitomycin C. Also, the increase in DNA content was completely inhibited by mitomycin C treatment. The present data suggest that the combination of vitamin D3 and zinc has a multiple effect on the stimulation of bone growth and mineralization in weanling rats, and that this effect is based on a stimulation of the DNA synthesis in bone cells.

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my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com