My question is about what i was first told upon diagnosis vs now. From my understanind MS people were not to take supplements as doing so might boot the immune system, thereby causing MS to fight back harder (made sense) but now they now we lack vitamin D and that D can diminish symptoms of MS (some of them) ..so is it safe or not to take vitamin D?
I asked my doctor is there was anything I could do with vitamins - he recommended B12 for central nervous system health. I've been taking 2500 mcg subling daily since he told me this. He cautioned against echinechea (I never took that anyway).
What about getting your D through some sunshine?? I always feel better with some sun on my face or laying on the beach while on vacation. Although the "raindrops" all over my body while laying in the sunshine is definitely a PITA!
When I saw an MS neuro a couple weeks ago and asked him about supplements, he recommended vitamin D (400 IU/day) and fish oil (I seem not to have written down how much; I am a long-time vegetarian and am still talking myself into this) for the omega-3's. Presumably he thinks these things aren't harmful and may possibly be beneficial.
Here are tinyurl links to a couple pubmed abstracts about vitamin D and MS:
And yes, I learned my lesson about long URLs and no line wraps in these posts :-)
The studies looking at whether supplemental Vit D is beneficial in "treating MS symptoms" have been pretty conclusive that it is not. It is also not harmful, done in moderation. There is no evidence that higher levels of B12 is any more beneficial to the nervous system than normal levels.
Shoshin - Flaxseed oil is almost as good a source of Omega-3s while you are deciding about the fishoil.
The link to Vit D levels appears to be in the causation of MS, that living in a latitude with low sunshine in the ealry years of life appears to be one factor of MANY in predisposing to developing MS. It would seem intuitive that supplementing with it would improve MS, but studies have not borne this out.
I haven't been Dx with MS just possibly. I take Caltrate 600-D plus, Flaxseed Oil 1000 mg, and D-1000 IU once a day. It has made a huge difference though it has taken awhile to do so. I was on this for about a month before I notice that simply things like (blush) using the bathroom or I should say twisting to clean self was much easier and now I can do so without pain or difficultly. Then just the other day I went christmas shopping and was there awhile before I notice that my back wasn't killing me. I still had to find a sit and rest. I still get real wobbly like my muscles are jello. Then with any excretion I overheat but at least the pain is better. Everyone tells me just use a wheelchair but I don't want to I want to be able to walk as long as I can. My cousin was in a wheelchair within months of her Dx. hers was a fast progessive type.
Anyways I feel like the combo of vitamins have helped a lot.
I have CFS and I'm currently being treated with the Marshall Protocol. Like people with autoimmune diseases, I have mycoplasma and bacteria causes vitamin D dysregulation. Like many people on the protocol, I have a low vitamin D result, but a high vitamin D 1,25 hydroxy. When you have bacteria, it causes your vitamin D to convert wrong. While I'm on this protocol, I have to avoid sunlight and avoid any and all foods with vitamin D in them. When I'm finished with this protocol, I should no longer be ill and my vitamin D will convert normally --- no restrictions.
Vitamin D is NOT a true vitamin. It is an immunosuppressive steriod.
I have a comment about the role of Vit D and it's analogs - PlateletGal is correct that Vitamin D is not a true vitamin. A true vitamin is something that is necessary for body health and CANNOT be synthesized in the body, so must be taken as a supplement. Vit D (and it will probably always be called a vitamin, just because of it's long history with that name.) is synthesized in the skin under the influence of UVB radiation. Yes, Vit D belongs to the "steroid" family, but does not possess the usual physiologic properties we associate with "steroids." It is a biochemical classification only.
For a little more than 20 years it has been known that Vit D palys a large role, perhaps it's most important role, as a modulator of the immune system. The immune system is vastly complicated with many factors that turn on parts of it, others that turn off or temper parts of if. It is also affected by external things such as diet, meds, and the environment. Vit D acts mostly to tamp down several parts of the immune system, so yes, it can, and frequently does, act as a partial immune suppressant. Categorically and solely labeling it as a "immunosuppressive steroid" I believe is misleadingly broad, and it's impication is that this is a bad thing.
This is where my reading of the sci literature counters a great deal of what the poster above believes. So readers here on the forum should realize that I do not "buy" her version of scientific reality, nor she mine. Vit D to a great extent suppressess the very chemicals of tissue inflammation - the Cytokines. A good example of this is the way Vit D synthesis in the skin protects the skin from even more severe, radiation burn and severe resulting inflammation. It has also been shown by that Vit D in higher doses is statistically effective at preventing routine influenza (not as effective as the vaccine) and especially the inflammatory effects of the flu. The leading theory of why influenza infections peak so dramatically in the late fall and winter (becasue it is present in the population all year) in North Amercia, is that skin synthesis of Vit D falls markedly during that time. This is due to the reduced penetrance of UVB as the sun lowers in the sky and by the cold weather which causes people to cover more of their skin. Vit D is a potent stimulus for the synthesis of antimicrobial peptides - a natural defense of the body against infection.
It also offers a potential explanation for why MS, in which the exact cause(s) has not been pinpointed, is more common in those who had less sun exposure, and thus, lower synthesis of Vit D in the skin in the first decade and a half of life. The Vit D, which would normally have held the immune system in check, wasn't there in sufficient amounts, in susceptible people who suffered the required triggers. Without this neccessary "suppression", though I prefer the term "damping" or "regulation" the MSer's immune system was allowed to proceed with the destruction of CNS tissue after the person was exposed to the proper triggers. It is this property that makes me unable to accept that Vit D stands in the way of healing from an infection, even with atypical bacteria who lack a cell wall.
Fortunately I only need to be without vitamin D until I'm finished with this protocol. It is amazing that people on this protocol are actually having better DEXA scan results, than when they were supplementing with vitamin D. How can anyone explain that ?? I just know that before I started this research protocol, I was extremely sensitive to the sun and had photophobia symptoms. My body was telling me that I did NOT need sunlight and that I needed to avoid vitamin D. Once I'm finished with this protocol, I shouldn't have anymore vitamin D dysregulation and/or immune dysfunction.
Here's a link on the subject if you are interested. You might also want to read about the Duke research study (same link)
Info from Joyce Waterhouse, PhD on vitamin D. Joyce is also being treated on the Marshall Protocol:
Vitamin D Book Chapter and Conference Presentation
Dr. Trevor Marshall was invited by Nova Science Publishers to contribute a chapter covering his work on Vitamin D in chronic disease for the book, Vitamin D: New Research (see below). Dr. Marshall’s new research on Vitamin D is challenging many of the commonly held beliefs about this so-called “vitamin,” which plays a crucial role in immune function. In some circumstances, Vitamin D (25D) may act more like a steroid immunosuppressant than a vitamin, allowing harmful cell wall deficient bacteria to increase. Dr. Marshall finds this can occur at levels many assume are safe. Limitation of Vitamin D is a key part of the Marshall Protocol.
The reference is: Waterhouse JC, Marshall TG, Fenter B, Mangin M, Blaney G, Vitamin D Metabolism in Chronic Disease. In Vitamin D: New Research, Nova Science Publishers, NY, 2006. http://winmlm.neostrada.pl/vitamindbook/vitamindnewresearch.pdf
A brief overview of this new view of Vitamin D can be found at: http://members.aol.com/SynergyHN/vitd and http://members.aol.com/SynergyHN/MPall). Additional published scientific information can be found at "Papers for Physicians" (http://www.marshallprotocol.com/forum2/2274.html ) and "Review - Vitamin D and Calcium in Sarcoidosis (7-5-03)" (http://www.sarcinfo.com/calcium.htm ). Information on testing the two types of Vitamin D levels is available at http://www.marshallprotocol.com/forum2/366.html.
Vitamin D Conference Presentation – New Material
Much of the information in the book chapter, as well as additional new material is covered in this transcript of the 2006 Los Angeles conference presentation on Vitamin D: http://autoimmunityresearch.org/transcripts/waterhouse_lax2006.pdf
I have read these articles - some of them months ago. They are interesting. I am not a convert.
Please note the statement in the quote from your post, "In 'some' circumstances, Vitamin D (25D) 'may' act more like a steroid immunosuppressant than a vitamin." (emphasis added) This qualified statement is what is being claimed, not the blanket statement that you made. The difference is important to your own credibility and for others to be able to evaluate the information. The one you quote here is accurate from my reading. The statement you made was overbroad and, I think, misleading.
I totally believe that people are saying this stuff. I didn't think for a minute that you were making it up. My problem with the entire issue is not the "science" behind it, but the broad and unsubstantiated claims generalizing to many other diseases and conditions from the interpretation of the data. I would not tell anyone to avoid researching this topic nor to avoid attempting it for their own benefit.
In that Vit D suppresses the cytokine inflammatory response in the skin caused by UVB exposure, it is counterintuitive to me to hear that sun sensitivity and photobobia is a sign of Vit D toxicity. I will not debate this with you. I am just adding a counterpoint. I do not interpret the data and it's implications in the same way as the group you are speaking about. Since I have strong opinions opposite to, but matching in topic, I will also express myself when someone comes onto the forum and propounds this theory.
Hi, Long time no See or talk! Where have you been? Have you been lurking??
While I hear your response to the Vit D, in the context of MS, is it possible you have simply gone into a remission? It's one of the enternally confounding factors that makes it so hard to evaluate therapies in this disease. However, I see no harm in what you are doing and the Calcium and flaxseed oil are highly recommended. Remember that the highest recommended dose is 2000IU per day and that Vit D intoxication can be life-threatening. Several small studies have shown a small benefit in MS with Vit D supplementation, but those studies have been criticized on several levels.
My statement was one of the statements on Amy Proal's website ( http://bacteriality.com/2007/09/15/vitamind/#1 ) and this has also been reported by other medical professionals as well (link: http://www.bioone.org/perlserv/?request=get-abstract&doi=10.1095%2Fbiolreprod.106.054056&ct=1&SESSID=157b029cfe646f04d3c251956ed3e436 )
Anyhow, it is a very interesting new perspective on vitamin D. The only thing I know that I'm getting better on this protocol and that is all that matters to me. Since I am getting better, I always like to share that information with others, in hopes that this treatment may help them as well.
Nice to see someone remembers me since I hardly post anything. I do mostly lurk especially when something is brothering me just to see if anyone one else is going through the same thing. Then there's time I don't get on the computer for weeks.
I didn't know that Vit D toxicity was life threatening this is good to know. When I first started this months ago I stopped because I was always nausesated and thought maybe it was because of the vitiamins. It was like the worse case of morning sickness all day long and then it finally stop. I decided to go back on the vitamins and to my amazement wasn't get sick.
This information is interesting to me although a bit confussing. I am thinking that vitamins shouldn't make me feel better but they are and I will take that. When I was young I got much sunlight all year long. We didn't know what it was to get hot or cold for that matter. There were 13 sibling so for my mother sanity we would be outside from the break of dawn until around 5:30 (had to be in before Dad got home). It has been in the past two years that I don't get enough sunlight-sometimes going days without even going outside. When I do go out it was in the evening because I just can't tolerate heat even mild heat. I didn't think I was on any Protocol just a combo of suggestions. The Flaxseed was because I was concern about my good cholestrol level. Although my bad cholestrol was a good number my good cholestrol was on the lower part of the range and I wanted to know have to be able to raise that number. Good diet and Flaxseed oil was suggested. I wont touch fish eww.
Could I be in remission? Maybe. I think mostly my Dr is thinking MS because of familial history. It just seems that every couple of months something knew comes up and everything could be a symptom of something else. Lately when I sleep on my right side my left arm goes numb and I get these feeling in my left foot that I have been cut. It is painful and I have to look to make sure even when I known that there is no way I was cut. Some things haven't ever went away like difficultly walking and the exhaustion I feel all the time and the unbalance feeling. I recently fell outside the post office on the side walk. The sidewalk was ate up a bit, like when you but the wrong kind of salt on concrete in the winter, not to bad just enough to through me off. Falling has always been my biggest fear.
My Dr has suggested that I move onto a Nuero but I haven't wanted to yet. If he believes me or not, think this is all in my head or not, he has been really respectful and not condescending or degrading to me. Not ready to go through all the rejection of my symptoms just to have it said to be all in my head or my favorite "your fat". Anyways in my mind my Dr is keeping up with me so I will have Documention and I found a MS specialist close to home and when and if there is signafigant reasoning I can bypass the other Nuero and make an appointment to see the MS specialist if anything just to have it ruled out.
It's good to make contact with you again also. I like reading your posts, I learn something new and they are always helpful.
You are right about vitamin D being produced in the skin. But the kidneys take the vitamin D and convert it to 1,.25, until there is too much available vitamin D, which when the time is right... allows the bacteria to take over the VDR and the kidney's job of producing 1,25D.
"Vit D to a great extent suppressess the very chemicals of tissue inflammation - the Cytokines. A good example of this is the way Vit D synthesis in the skin protects the skin from even more severe, radiation burn and severe resulting inflammation."
This is why people on the MP take Benicar. What Benicar does is it helps prevent the inflammation from the cytokines and it helps prevent organ damage.
Giving vitamin D to folks whose VDR has already been commandeered amounts to suppressing the very process that is needed to do away with the dastardly creatures that have run amok and are creating the cytokines in the first place. Sooner or later this strategy of suppression fails (as the bacteria become more dominant). This experience can be seen over and over again with folk who actually take steroids.
http://www.medhelp.org/posts/Multiple-Sclerosis/Vitamin-D-may-reverse-the-effects-of-MS--trial-finds/show/959118 I would assume most of you have seen or will look at this thread. I know Vit. D3 makes a big difference. I have SPMS, I was in a power chair with use of one arm for years. I started taking a lot of vit. D about 5 years ago and I can now walk at least around the house and have use of both arms most of the time. I still get flare ups, but no where near as bad as they were. Check youtube for Vit. D, see what's up now. Most of all, keep in mind the drug companies can't make much profit from vitamins, so research is slow and hard to come by but it is out there and it is good stuff for MS people to read and see.
I now feel very confused about Vitamin D and am not sure what to beleive. I have read many conflicting posts and some articles on the internet. At the end of the day I think that we all have to make our own decisions about what we feel helps us individually but to do this in conjunction with our own neuros advice.
I have been low on vitamin D for several months and have been supplementing and will find out in the next few weeks what my levels are and if it has made a difference. However I have also just had a short holiday in Tenerife and had some wonderful winter sun and feel sooooooo much better. The cold makes me miserable and I sometimes feel it right through my body and this is something that I never used to experience. I was a winter baby and so I beleive my mother did not get enough sun light while I was in the womb. I think there could be a link together with other environmental and health factors. I shall follow future research with interest.
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