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Vitamin D and MS ?
Earlier, today I got a call from my neuro about a blood test I had last week when I went for my 6 month check-up she wanted to check my Vitamin D level. And she said my level was very low so she prescribed Vit D2 50,000 units,I take one softgel once a week for 6 weeks and then one pill once a month until finished,and then in 8 weeks she do another blood test to check the levels. She's also has me taking calcium pills one pill twice a day. It's kinda scary I've been doing research on this and low levels of vit D and the higher risk of breast cancer and now I really don't want to make a appointment for my first mammagram I've been putting it off for a year now. MS is scary enough for me thank you. I'm just wondering if maybe this is partly why I got MS I know there is a connection with low levels of Vit D and MS.See when I was a little kid I was always out in the sun we had a pool and I was as brown as a bear in the summertime but when I got older I just didn't go out in the sun that much because I burn very easy. I would really like to have your guys opinion on the subject. Thanks Kristi.
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Vitamin D deficiencies are the latest "trend" in MS. :cool:
In testing for vitamin D deficiencies, there are two methods that labs use for reporting Vitamin D levels: 1. nanograms per milliliter (ng/mL) (To convert ng/mL to nmol/l: multiply by 2.5, eg. 40 ng/mL *2.5 = 100 nmol/L) 2. nanomoles per liter [nmol/L] (To convert nmol/l to ng/mL: divide by 2.5, eg. 100 nmol/L /2.5 = 40 ng/mL) The optimum levels of vitamin D are defined as: 1. LESS THEN 20 ng/mL (50 nmol/L) is generally considered inadequate. 2. Between 20 (ng/mL) – 100 (ng/mL) is “normal”, by most accounts. Where someone is deemed deficient (< 2o ng/mL), which can occur because of: - dietary inadequacy, i.e. exposure to sunlight is limited or diet restrictions (milk allergies/lactose intolerance, vegetarianism, etc.) - impaired absorption, i.e kidneys cannot convert vitamin D to its active form, or absorption of vitamin D from the digestive tract is inadequate . . . The "normal" recommended FNB daily intake of vitamin D range is from 200 IU (5 mcg) to 600 IU (15 mcg) . . . dependant on age (as provided by the NIH & Food and Nutrition Board). The best way to source Vitamin D naturally is by getting 5-30 minutes of DIRECT sun exposure between 10 AM and 3 PM, at least twice a week. This exposure can be to (NOTE: EITHER) the face, arms, legs, or back. However, one must realize that: - complete cloud cover can reduce UV energy by 50% - shade (including that which is produced by severe pollution) reduces UV energy by 60% - Sunscreens with a sun protection factor of 8+ may block vitamin D-producing UV rays (but people generally do not apply sufficient amounts, or reapply their sunscreen frequently enough to cover all sun-exposed skin anyway) People can also source sufficient vitamin D from their diet: - fortified foods will provide most of the vitamin D people need, ie. U.S. milk is fortified with 100 IU/cup of vitamin D (which is already 25% - 50% of the daily recommended value, depending on age). - 1 tbsp of cod liver oil = 1360 IU’s per serving (almost 3 X the average daily recommended requirment) - The flesh of fish (such as salmon, tuna, and mackerel) = 200 – 350 IU’s per serving - fish liver oils - beef liver, cheese, and egg yolks (15 – 60 UI). - some ready-to-eat breakfast contain added vitamin D, as do some brands of orange juice, yogurt, and margarine, ie. cereal flours and related products, milk and products made from milk, and calcium-fortified fruit juices and drinks. - moderate use of commercial tanning beds (that emit 2-6% UVB radiation) There have been some “theories” about lack of vitamin D being contributory to the initial development of MS, based on the “gradient latitude” hypothesis, . . . but the prevalence and distribution of MS has changed so significantly over recent years, that theory is becoming more and more obsolete. There is also no proof what-so-ever that increased vitamin D will affect the disease process in any way. Can you find out what your vitamin D levels are right now? Cherie |
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Thanks Cherie for replying to me good information. I will find out soon what my Vitamin D levels are my neuro also sends my test results in the mail so probably this week or next week I should know. |
When I went to the MS Expo, the doctor speaking talked about Vitamin D and it's effects on MS. I was born in Mass, so I definitely was in cold weather for most of my life. The theory this man explained was to have your residence closer to the equator BEFORE you're 13. Such as: if you lived in GA for 12 years of your life and then moved to the cold.. you would have the immunity of someone that's "protected" *lol* Unfortunately for me I had 27 yrs of cold Mass. weather and yes it has to do with being in the sun.
There are of course exceptions to this rule.. there was a woman there that moved to a warmer climate before she was 13, but of course she still got MS. I was getting sick and tired of waiting for dr's to treat my lack of minerals/electrolytes so I started to take Vit. C& E, Magnesium/Zinc/Calcium, B12, Fish Oil, Potassium, etc. to bring all my levels up to normal levels.. I do feel better but taking all these pills - YUCK! |
Kristi, I take vitamin D and Calcium daily because of MS. I don't know if it is helping. Make your appointment for your mammo! It is very important!
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Special MS Vit D3 needs
For almost ALL MS folks getting MORE than a sufficient amount of Vit D is a VERY VERY good idea.
Taking between 2,000 and 4,000 IUs of Vitamin D3 (Cholecalciferol) will result in VERY favorable changes in blood chemistry. Actual good changes start at 1,000 IUs. MS folks are "ABNORMAL" i.e. SICK and EXCESS Vit D3 is for them GOOD. Think "outside normal" when it comes to MS needs. Vit D3 is the best non-Rx version to take. Getting some blood testing done before and after starting a Vit D3 supplementing program is a good idea but not really an absolute necessity. The upper limit for Vit D3 supplementing is 10,000 IUs. The calcium issue is more complex and varies by gender, age and many other complex things. In my situation I am concerned about excess calcification in soft tissues. I will post some abstracts/articles to explain some of my comments. jackD |
The benefit in reducing MMP-9s is enormous. They make the hole in the BBB Blood Brain Barrier and cut up myelin. I discussed this in my recent Avonex posting.
They do not mentuion MS in this abstract probably because it was done in 2002 and the MS MMP-9 connection was not published in detail until 2001. jackD Quote:
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1000 IU Vit D3 positive effects for MSers
Here is one study done at Penn Stata Univ funded by the National Multiple Sclerosis Foundation which back in 2001 showed how Vit D3 supplements can help blood chemistry. This is from their public press release at that time.
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Thank you for these studies. It is not easy to find nutrition research that relates to MS.
It is predicted that the minimum requirement for Vitamin D will be increased in 2010, when the decade cycle on nutrition updates is scheduled. Anytime a nutritional requirement is changed it affects food programs, such as food stamps, WIC, and school lunches to name a few. They try not to change them too frequently. |
There was a news story on vitamin D and MS on the news tonight. It dealt with a study that examined twins and preventing MS. You can read it on their web site. Just click on the health search engine.
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Being cognitively challenged at times, that was quite a bit of information to absorb so bear with me if this was in Jack's post. In order to get an adequate amount of D3 one must get an adequate amount of sunlight with ultraviolet B. This is challenging for some in many parts of the country. Not so for the southwestern states. When the weather is cooler, I sit out in the sun for 15 minutes a day give or take. When it is hot, as in now, I will sit by a window. Would sitting by the window be enough?
BTW - I lived most my life on Long Island and CT. Additionally, I know of 4 people that were born and raised in AZ that have MS. So I am not 100% convinced on the vitamin D theory. |
There is also a good thread on Vitamin D in the vitamin forum.
also I remember an article where they did a test on people in Hawaii (sunny all the time right) and there was a good proportion that had low vitamin D. So there are people that either do not absorbe well through the sun or dont convert well was what I think it said. My Vit D was low and I have been supplementing with 1000 iu a day and it has definitely helped with muscle pain and fatigue. |
In Rod we trust Go Blue !!! love it Shelley.Well, I sure hope my Vit D levels will be normal in 8 weeks when my neuro will do another blood test to check my levels again,I wonder if she'll want me to stay on Vit D I don't know because I want to stay on it as it sounds like it really can help me.
Go Blue !!!!! |
vit D
FYi: I had posted this on another forum in May.
There is a great article on Vitamin D starting on page 44 of May 2008 Cooking Light magazine. It predicts that when the new levels get reset in 2010, they will be increased. ( They don't reset nutrition levels but every 10 years.) "In the absence of it, you're asking the body to defend itself with one hand tied behind its back." I was surprised b/c it said that a fair skinned person manufactures as much as 15,000 IU in 30 minutes with optimal sunlight conditions, so that is why they think giving people 10,000 IU as a supplement is okay! The normal values for daily intake are 200 to 400 IU according to your age, but this information is a decade old. It gives guidelines on the time of day for the sun to be at a 45 degree angle above the horizon and speaks about those of us who live above the 35 degree of latittude ( North Carolina to Southern California). An spf of just 8 will block 98 percent of your skin's vitamin D production. So we should not have it on all the time. They suggest having Vitamin D levels checked with bloodwork for something that insurance usually covers like a cholesterol panel or any other annual test. However they think you should always check with your insurance company first. Most public libraries have Cooking Light magazine in the periodical area. |
FYI: I had posted this in another forum last month.
There is a great article on Vitamin D starting on page 44 of this month's Cooking Light magazine. It predicts that when the new levels get reset in 2010, they will be increased. ( They only reset nutrition level every 10 years.) "In the absence of it,"... (vitamin D) ..." you're asking the body to defend itself with one hand tied behind its back." I was surprised b/c it said that a fair skinned person manufactures as much as 15,000 IU in 30 minutes with optimal sunlight conditions, so that is why they think giving people 10,000 IU as a supplement is okay! The normal values for daily intake are 200 to 400 IU according to your age, but this information is a decade old. It gives guidelines on the time of day for the sun to be at a 45 degree angle above the horizon and speaks about those of us who live above the 35 degree of latittude ( North Carolina to Southern California). An spf of just 8 will block 98 percent of your skin's vitamin D production. So we should not have it on all the time. They suggest having Vitamin D levels checked with bloodwork for something that insurance usually covers like a cholesterol panel or any other annual test. However they think you should always check with your insurance company first. Most public libraries have Cooking Light magazine in the periodical area. |
Tkrik, you would be surprised how people modifiy life in Arizona and Texas.
I have lived in both places. By May it is 105 in Az. You go out very early in the am or late evening, when less direct sun to do anything outside. Cars have tint so the temperature does not get so hot your windows blow out. I'll never forget TX. I remember sticking my head out the door and it felt like I was putting it in an oven. Only when we could go to the pool club did we go out during the day. |
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Counting down to the start of the season. If I were you after the 8 weeks I would go on a maintainence dose of like 1000iu a day of D3. Otherwise over time it will just deplete again. |
Starfish - Thank you so much. That is the information I was kind of looking for.
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Risk assessment for vitamin D
I think it is very unwise for amost anyone to exceed 10,000 IU of Vitamin d3.
I take a total of 4,200 IUs of Vit D3 in supplement form daily. jackD p.s UL = Upper Level intake safe amount Quote:
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Yeah not sure I would exceed 1000 iu a day. Slow and steady is the way I am building mine back up.
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This is the most comprehensive information about Vitamin D I have yet to find. As you get towards the bottom ( long) it explains why doses are being given above 2000 IU a day.
It is very interesting because it cites how steroids affect calcium and Vitamin D, and how other medications alter absorption. http://ods.od.nih.gov/factsheets/vitamind.asp For more info google: vitamin + D + absorption Thanks for the article from the Journal of Clinical Nutrition! |
I cant keep my Vit D level up. I have taken lots of different over the counter stuff too. I was recently placed on Rx stuff. I hope that helps. I already feel better after just a couple of weeks on it.
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D2 vs. D3
Kristi, I'm quite surprised you were prescribed D2 as opposed to D3 (aka Cholecalciferol). D3 is the equivalent to the "sunshine" factor and is processed in the body as a hormone -- it's specifically that form that's been the hot topic.
I started reading a lot about D3 after I was dxed and have been taking a little over 3,000 IUs daily for at least 9 months. (I ADD UP the D in my calcium and mult-vitamin and then supplement with two 1,000 capsules made by Jarrow.) Vitamin D can build up in the body and can be toxic so your levels should be monitored, as well as your liver function. I don't know if my levels were low before I started supplementing but my endocrinologist tested me a few months ago and even with the amount I'm taking, I was still within normal range (and my liver function was fine). However, I will continue to be monitored, having these tests repeated in future blood work. My endo explained to me that for some reason, they're finding that those high 50,000 IU doses weekly do not seem to present the same problems as high doses building up over time. The RDA UL for "healthy" people has been raised to 600 IUs. There have been several studies about vitamin D (D3 specifically) possibly being helpful with various neurological disorders, not only MS (and not only in terms of prevention). I know many people with MS in the U.S. whose doctors have been recommending (if not prescribing) vitamin D3 to their patients even if their levels are not low. Most of the things I've read about using this supplement like a "drug" recommend up to 4,000 IUs daily but to reduce intake in the summer or if you live in a sunny climate year round. Again, do be careful though -- do your own research, speak to your doctors and if you DO take it, have your D levels and liver function tested periodically. |
The dark side & Vit K1 &K2
I have recently added Vit K to my supplement list because I found in the
MPEG of my body CT Scan noticeable Calcium deposits around my heart aorta and some considerable Calcification in my right Femoral Artery. One of the causes of this is Vitamin D supplementation!!! Note --- there are different kinds of vit K K1 (phylloquinone) is present naturally in plants. K2 (menaquinone) is made by bacteria in the intestinal tract of humans and animals K3 (menadione) is man made. K4 (menadiol) is man made. It can be used by intestinal bacteria to make K2. Unlike the fat-soluble compounds K1, K2 and K3, K4 is water-soluble I have discovered that Vit K supplements will stop and help remove this excess calcium. I also believe that Vinpocetine may have a similar action(at least in rabbit tests). I am taking the LEF(life Extension Foundation) "SUPER K with K2" supplement which has 9 mg of Vit K1 and 1 mg of Vit K2 http://www.lef.org/newshop/items/ite...ced-K2-Complex jackD Quote:
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Arterial calcification is characterized as a buildup of calcium in the arterial walls. It is a process that can begin as early as the second decade of life and continue throughout adulthood. Although calcium is an essential nutrient in maintaining human bone integrity, the trick is to keep it out of the arteries. Studies have revealed that adequate levels of vitamin K may help in keeping calcium in bones and out of arterial walls. Caution Those taking anticoagulant drugs such as Coumadin or heparin should avoid vitamin K supplements. |
Thanks, Jack. I'd heard about this in regard to calcium supplementation and have been meaning to look to research it more thoroughly. I'm definitely going to mention it to my endocrinologist when I see him in September.
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Vinpocetine & MS
Here is the rabbit thing plus the Bladder thingie. I take 10mg of Vinpocetine twice a day.
jackD p.s. It is also the BEST cure for MS(58% reduction in lesion activity) and fixes my bladder problems. There is some considerable hyperboyle in the preceding statement but that is what the study showed. Quote:
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I took the 50,000 IU pills once a week for 9 weeks. It bumped my level up into low normal range. I am now taking 1,000 IU a day. The MS specialist I saw at the Mayo Clinic in MN. said that I should be taking Vitamin D supplements every day. The MS specialist I saw in my own city 2 weeks ago said that Vitamin D deficiency is a risk factor for MS (apparently I hit the MS jackpot and as she put it "the stars lined up" because I had 4 risk factors: 1) Vitamin D deficiency 2) grew up in Mass. until age 22 3) mother just diagnosed with MS last year right before me 4) wicked mono/epstein barr infection the year before my diagnosis). Lucky me! <heavy sarcasm> :rolleyes: Anyhow, nothing proves that taking Vitamin D after the fact will slow the disease down but why not take the supplement? There does appear to be a correlation of some sort. |
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I don't know why my neuro prescribed vit D2,heck I didn't know there was a D2 and D3, I just thought there was just Vit D period. I'm glad I started this thread,I've found out alot of good information from alot people here. |
Nerve Growth Factor -good Stuff
Most folks do not know much about this but NGF Nerve Growth Factor is great stuff to have in sufficient quantity to take care of those small? brain repair jobs common to MS folks.
If you are LOW in Vitamin D then you are probably LOW in NGF Nerve Growth Factor also. I probably should start a new thread to elaborate on this topic.(Nerve Growth/Repair) Suffice it to say that Vitamin D makes the body make NGF as stated in the below abstract. http://www.copewithcytokines.de/cope.cgi?key=NGF (a GREAT sources of my info) This is why I take 4000 IUs of Vit D3 supplement each day. The excess is GOOD for MS folks because our NEED is greater. jackD http://www.ncbi.nlm.nih.gov/pubmed/9...ubmed_RVDocSum Quote:
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NGF - Calcium - The Degenerative Stage of MS
Numerous neurotrophic growth factors help determine which neurons develop in the immature brain and which are retained in the adult brain.
Neurotrophic factors can also induce neurons to sprout axons capable of growing into new locations and forming new synaptic connections, a process that continues in the mature brain. NGF (Nerve Growth Factor) is one essential neurotrophic growth factor. The below links describe how calcium is used in this process and how Glutamate toxicity kills neurons using Calcium in the Second stage of MS. http://www.psychiatrist.com/pcc/brainstorm/br5904.htm (main article) http://www.psychiatrist.com/pcc/brainstorm/br5906.htm (therapeutic potential) http://www.psychiatrist.com/pcc/brainstorm/br5806.htm (Glutamate assassin/excitotoxic neuron murder) The Second Stage of MS is "The Degenerative Stage" in which "excess Glutamate" runs wild on a killing spree. First phase, of course, is the "Inflammatory Stage" of MS. http://home.ix.netcom.com/~jdalton/ms-two-stages.pdf jackD |
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Thanks, Jack for all your good information on the subject. |
Hi jackD! You are making want to go to the library and get a biochem book!! I am sure I got rid of my college book when it was 25 years old.
I am concerned that NGF also influences the activity of B and T cells. I would have to understand how a little better. I did find vitamin D3 at BJs Wholesale Club in 1000 IU capsules. I understand why we may need more. I very much liked your last link because it had the best graphic explaining the nerve issues with the chemicals and how Copaxone works in certain situations.If anyone has a little knowledge about biochem you really should take a peek. I don't know how you are finding this material, in its complete form, but I am glad you are sharing it. Its not easy to find more than just an abstract. I know that our dendrites can grow and elongate, http://www-als.lbl.gov/als/science/s...9receptor.html and that is why my neuro told me about Wii actually helping to grow these for folks who can't get enough activity outside of the home. So to keep this back to Vitamin D, it supports the NGF, if I am interpretting this properly. |
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You are right about the Vit D and NGF connection. That techie site... http://www.copewithcytokines.de/cope.cgi?key=NGF says that ... Quote:
That comment about Glucocorticoids (STEROIDS) blocking NGF production is a real bummer. jackD |
idebenone - NGF
I also take some IDEBENONE to get some extra NGF production in my brain. It is a bit expensive and you need to take 2 caps daily.
jackD p.s. It a modified form of CQ-10 and is somewhat difficult to find in stores. I hear the rats love the stuff. I can now make it thru the water maze in a flash. Quote:
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Other reason for taking Vit (K1 & K2) combo
Not a bad side effect for something that stops/removes excess calcium deposits from Vit D/calcium supplementing.
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NGF & Vit K1 K2 & neurons
Interesting to see how NGF and the Vit Ks work together to protect and enhance neuron outgrowth.
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glutamate excitotoxicity
Neurologische Universitätsklinik, Robert-Koch-Strasse 40, D-37075 Göttingen, Germany.
Axonal destruction and neuronal loss occur early during multiple sclerosis, an autoimmune inflammatory CNS disease that frequently manifests with acute optic neuritis. Available therapies mainly target the inflammatory component of the disease but fail to prevent neurodegeneration. To investigate the effect of minocycline on the survival of retinal ganglion cells (RGCs), the neurons that form the axons of the optic nerve, we used a rat model of myelin oligodendrocyte glycoprotein (MOG)-induced experimental autoimmune encephalomyelitis. Optic neuritis in this model was diagnosed by recording visual evoked potentials and RGC function was monitored by measuring electroretinograms. Functional and histopathological data of RGCs and optic nerves revealed neuronal and axonal protection when minocycline treatment was started on the day of immunization. Furthermore, we demonstrate that minocycline-induced neuroprotection is related to a direct antagonism of multiple mechanisms leading to neuronal cell death such as the induction of anti-apoptotic intracellular signalling pathways and a decrease in glutamate excitotoxicity. From these observations, we conclude that minocycline exerts neuroprotective effects independent of its anti-inflammatory properties. This hypothesis was confirmed in a non-inflammatory disease model leading to degeneration of RGCs, the surgical transection of the optic nerve. PMID: 17239606 [PubMed - indexed for MEDLINE] |
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THANKS! Targeting "things" to reduce BOTH Inflammation and glutamate excitotoxicity makes a lot of sense. I am not a fan of minocycline treatment because I feel that it's main benefit comes from reducing MMP-9s and the damage the MMP-9s do in the MS's destructive processes. I have been researching safe ways to reduce glutamate excitotoxicity via a number of common supplements. I hope you realize that it is NOT the antibiotic nature of minocycline that provides its MS benefit. I would not take it or recommend taking it for a long period of time. There are better & safer alternatives. jackD Quote:
http://home.ix.netcom.com/~jdalton/ms-two-stages.pdf Below pic/chart is from this report. NOTE EXCESS GLUTAMATE http://home.ix.netcom.com/~jdalton/two%20stage%20MS.jpg |
vitamin D3
I asked my doc to check my levels and they were excessively low. She put me on the mega dose for awhile and now I take 1000IU a day to maintain. I don't feel any different, but I do believe no one should have low levels of anything without paying consequences later on.
I grew up in Michigan so enough said. Perhaps people with low vit D levels get sick....or maybe sick people develope low levels of vit D.....I'm not sure...but getting your levels up is optimal. |
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