My Latest Experiment: Vitamin D

[euphoniaa]

Gee I wish I didn't have such weird/nasty reactions to vitamins (or else their additives). I've been feeling so well since I gave up all vitamins months ago -- particularly in digestive issues (bowel/bladder) -- that I hated to take a chance on spoiling it.

But I've been trying to work up the nerve to start vitamin D again, due to all the positive reports about it. Finally...last night I took 500 IU (corrected the dosage from 500 MG) of vitamin D. I had an unusual, horribly restless night and woke up this morning wracked by aches and pains throughout all my muscles and joints and I can barely move, also very unusual. I can barely keep my eyes open, also very unusual, since I usually spend an hour exercising in the mornings. If I now have to spend the day in the bathroom at work, I'll be p***ed. Could be something else...could be the vitamin additives and not the 'D'...I'll try to keep it up for a few days and see what happens.

The reason I stopped vitamins is that I had been feeling great up until the day I was dx'd with MS 5 years ago and started adding one recommended vitamin/supplement after another. Digestive issues that had always been a bit of an issue with me became a MAJOR problem. So I decided to go back to what had been working so well until then -- general healthy diet and lotsa exercise, with no extra supplements -- and it felt great. I already know that I have serious, full-blown allergies to most Omega 3s, so it only makes sense that I'm allergic to everything else that might be good for MS. :)

If anyone has suggestions on finding the purest form of vitamin D or wants to tell their personal vitamin experiences, feel free to join in. I'll be keeping my charts.

Good luck, all!

[euphoniaa]

P.S. I haven't been posting much because, as many of you know, my not-so-helpful treatment approach is to generally do the opposite of the accepted MS wisdom myself, and advise posters accordingly. So I figure I should just keep my mouth shut (or my fingers still). And I've also been dealing with real life issues, including the death of my mom.

But I stop and check in now and then because I truly do care about everyone and how they're doing...and then I convince myself to just keep my mouth shut altogether... :)

So, do feel free to stop by my thread and say hi, or tell me a story, or a joke, or give me a stern lecture (I start to miss those when I haven't been around for awhile)... :)

[0357]

Hi Susan! I don't know what went wrong with your taking vitamin D. I take a multi-vitamin, calcium w/vit. D and fish oil daily. Seldom though do drugs bother me, and if they do they usually have the opposite affect on me than listed.

I'm sorry for the passing of your mom. With deepest sympathy.

Take care.

[gonnamakeit]

Susan,

The best way for you to get vitamin D is to sit in the sun for 15 minutes two or three times a week. If you eat fatty fish, such as salmon (wild) several times a week, you will also get enough D.

As far as all of the other vitamins, if you eat a balanced diet, they are probably not necessary anyway. Many doctors I have seen through the ages on television have said that most of us don't need additional vitamins if we eat enough vegetables and get protein daily.

gonnamakeit

[Ted Hutchinson]

The human body requires 3000-5000iu/daily D3. (http://www.ajcn.org/cgi/content/full/77/1/204)
Because your body (because you have an MS diagnosis, or PPS in my case) is under challenge it is reasonable to suppose to fight this pro inflammatory challenge our bodies require somewhat more Vit d in reserve to benefit from it's anti inflammatory properties. It seems reasonable therefore to aim for a level above 50ng and as near to 70ng as you can get.

70ng represents a total intake, from sun, diet, supplements of around 7000iu/daily Currently the average UK adult has a level of 25ng and therefore an extra 5000iu/daily is required to raise that to between 50-70ng.

This Calculator will help you work out how much full body exposure sunshine is required daily (http://www.thevitamindcure.com/calculator)

These are the 5000iu/d capsules I use (https://secure.bio-tech-pharm.com/detail.aspx?product_id=18&cat_id=2&subcat_id=0)

Do be aware it is absolutely totally impossible to get a significant amount of your daily vitamiin D requirement from your diet. Similarly the idea that you can get sufficient Vitamin D from 15mins 2-3times weekly is totally wrong. That applied to the current official RDA and as we now know that is totally inadequate we NOW know that 5000iu/daily is required therefore you need at least 25mins EVERY DAY full body exposure when your shadow is shorter than your height. (UVB is present)

500 mg vitamin D3 is a huge amount I SIMPLY DO NOT BELIEVE you took that much.

It is more likely you took 500iu that is a totally trivial amount and is unlikely to do any good whatsoever and as for causing side effects that's totally implausible.

If you start taking 5000iu/daily NOW it will take about 3 months to raise your status to optimal only then will you start feeling a little less pain and a little more muscle strength.

[Braindead]

Hate to mention it folks but you are SICK SICK SICK and maybe that is why a little extra of normal vitamins helps the lessen/"cure" (GOD forgive me!!) the sickness.

Braindead

[Jeanie Z]

Hi Susan,
I was happy to see your name on the board. I am so sorry your Mother died. How are you doing?

As to Vit D I take 1000 IU daily plus what is in my Silver multi vitamin. Email me when you get a minute. Love, Jeanie :)

[Mariel]

Susan, I have Porphyria, as you may remember, or not. Porphyria makes it hard for me to take many drugs (not all) and many supplements. It also causes digestive disturbance unless one is very careful to avoid many things which are porphyrogenic.

In addition to this, I too have this odd condition, which does not seem related to porphyria, of not being able to handle Omega 3's when they occur as singularities (i.e., apart from their normal occurrence, in small quantities, in some foods). I cannot even handle them in salmon, flax, or other natural foods where they occur in large quantities.

However, I can take 600-800 mg of Twinlab Allergy D caps! I upped the dose when reading about my need for D here on this forum, and after a naturopath tested me as having l5% of normal D.

I also must avoid sun because of porphyria, although one type of porphyria allows sun exposure (a different type from mine). In the Pacific N.W. where the sun was scant, I could tolerate l0-l5 minutes outside on a semi-cloudy or overcast day.

I have learned that some supplements are absolutely needed for me, to take the place of the drugs I cannot take because of Porphyria. These are at least l000 mg of Magnesium a day to stop myoclonus, 200 mg of E complex to stop burning legs, l000 mg of Calcium to stop foot and leg spasm and other spasm, and 250 mg of non-flush niacin to stop vascular spasm. In addition I have found other supplements I can take in the way of One-a-Day, Lutein, and others. All of these agree with me, although I spent years taking vitamins and minerals which did not. I'd be rich if I hadn't had to experiment with this and with trying to find a suitable place to live. If only KNOWLEDGE was in the doctors' lexicon. You can find the knowledge eventually, but it may decades.

With your symptoms I would suggest you read about Porphyria. It is a possibility. Not a certainty, but you can hardly deny yourself the knowledge about it. I re-emphasize that reaction to Omega 3 is usually NOT a part of porphyria.

I also have Essential Thrombocythemia, but I am not certain this has anything much to do with any of the above except this: In ET, as in MS, it is advisable to avoid red meat, any red meat.

I have been on the Swank MS diet for over 20 years and low saturated fat diet is a must.

Bless you, poor Pilgrim.

Mariel

[euphoniaa]

The human body requires 3000-5000iu/daily D3. (http://www.ajcn.org/cgi/content/full/77/1/204)
Because your body (because you have an MS diagnosis, or PPS in my case) is under challenge it is reasonable to suppose to fight this pro inflammatory challenge our bodies require somewhat more Vit d in reserve to benefit from it's anti inflammatory properties. It seems reasonable therefore to aim for a level above 50ng and as near to 70ng as you can get.

70ng represents a total intake, from sun, diet, supplements of around 7000iu/daily Currently the average UK adult has a level of 25ng and therefore an extra 5000iu/daily is required to raise that to between 50-70ng.

This Calculator will help you work out how much full body exposure sunshine is required daily (http://www.thevitamindcure.com/calculator)

These are the 5000iu/d capsules I use (https://secure.bio-tech-pharm.com/detail.aspx?product_id=18&cat_id=2&subcat_id=0)

Do be aware it is absolutely totally impossible to get a significant amount of your daily vitamiin D requirement from your diet. Similarly the idea that you can get sufficient Vitamin D from 15mins 2-3times weekly is totally wrong. That applied to the current official RDA and as we now know that is totally inadequate we NOW know that 5000iu/daily is required therefore you need at least 25mins EVERY DAY full body exposure when your shadow is shorter than your height. (UVB is present)

500 mg vitamin D3 is a huge amount I SIMPLY DO NOT BELIEVE you took that much.

It is more likely you took 500iu that is a totally trivial amount and is unlikely to do any good whatsoever and as for causing side effects that's totally implausible.

If you start taking 5000iu/daily NOW it will take about 3 months to raise your status to optimal only then will you start feeling a little less pain and a little more muscle strength.

Yikes Ted! You're right about my dosage being 500 iu instead of mg. Sorry to confuse folks...I changed my first post. As for the side effects, I assume it's more likely that I get them from whatever has been added to the vitamins/supplements. In fact, my bottle lists 5 other ingredients -- and a warning to watch for adverse effects.

Also, one of the strangest things about my MS/HNPP is that I seldom have any pain at all and that I can work out at the gym and run up and down 4 flights of stairs at work -- without vitamins. Today's pain was an entirely new experience.

My most weird and scary reaction though, was when I took flaxseed oil for a couple of months, along with Restasis eye drops, as my ophthalmologist prescribed. All 10 of my fingertips throbbed with nerve pain, forcing me to sleep every night with my fingers stuffed into those metal splints to keep them from bumping into the pillow, etc. in the night. Some days I would sit at work in tears from the throbbing, even when I didn't touch anything.

Assuming the problem was anything except flaxseed, I made every sort of lifestyle/diet change I could think of until I dropped the flaxseed (omega3) oil. The pain left within 2 days of stopping flaxseed and has never returned. It was obvious it was not an MS thing, because those symptoms are all one-sided for me. I'm also allergic to omega3-filled walnuts and shellfish, which sent me to the ER. And I've reacted to fish oil and coral calcium.

I appreciate your input, though, and I'm pretty convinced that Vit D is a good thing. I just have to find the right version. :)

[euphoniaa]

Hi Susan! I don't know what went wrong with your taking vitamin D. I take a multi-vitamin, calcium w/vit. D and fish oil daily. Seldom though do drugs bother me, and if they do they usually have the opposite affect on me than listed.

I'm sorry for the passing of your mom. With deepest sympathy.

Take care.

Hi, 0357, thank you for your input. I wish I could tell precisely what hits me wrong with vitamins, but I felt so good when I dropped the extra ones that I quit the general multi-vitamin that I had taken for years as well. Although I have always thought I had IBS, I spent the first month sans vitamins without a single episode of diarrhea or urgency either. Go figure. :rolleyes: I liked it.

And thank you for your good thoughts about my mom.

[euphoniaa]

Susan,

The best way for you to get vitamin D is to sit in the sun for 15 minutes two or three times a week. If you eat fatty fish, such as salmon (wild) several times a week, you will also get enough D.

As far as all of the other vitamins, if you eat a balanced diet, they are probably not necessary anyway. Many doctors I have seen through the ages on television have said that most of us don't need additional vitamins if we eat enough vegetables and get protein daily.

gonnamakeit


Hi gonnamakeit,

I've been trying to suck in as much vitamin D as I can from the summer sunshine. And I suck in the most vitaminy veggies I can -- I sit and eat bags full of fresh fruits and veggies almost every day. Fish worries me a bit, but I've never had a problem with tuna or salmon. I just try not to overdo anything. I've often wondered if it's possible that I may be maxing out in certain vitamins a bit. Wish there was a way to measure what I'm really getting in food for the day.

Good luck to you.

[euphoniaa]

Hate to mention it folks but you are SICK SICK SICK and maybe that is why a little extra of normal vitamins helps the lessen/"cure" (GOD forgive me!!) the sickness.

Braindead
Well hiya, Jack! Don't be shy...why don't you tell us what you really think for a change? :)

Now maybe you (or anyone else) can help me out here, though. What are these other ingredients in my vitamin D going to do to me: Dicalcium Phosphate, Cellulose (Plant Origin), Vegetable Magnesium Stearate, Croscarmellose, and Cellulose Coating? There's no reason for pure vitamins to make me as SICK, SICK, SICK as they do instead of BETTER, BETTER, BETTER.

I'm glad to see you're still around and kicking though...well, as long as you don't kick me too hard. :)

[euphoniaa]

Hi Susan,
I was happy to see your name on the board. I am so sorry your Mother died. How are you doing?

As to Vit D I take 1000 IU daily plus what is in my Silver multi vitamin. Email me when you get a minute. Love, Jeanie :)

Hi Jeanie,

It's great to hear from you! I think about you lots, but my life outside the net (home, work, family) is mostly overwhelming these days. I barely manage to read a handful of posts each week, so I can't keep up with anything or anybody here. I'm obviously going through a talky phase this week however...sure wish we could chat again in person!

Hope you're doing as well as I have been. I've had a pleasantly healthy year considering how old and sick I really am. :) My mom had been in a nursing home with advanced Alzheimer's for the last several years so...I don't think I have to explain any more than that about her death.

Thank you for your good thoughts, and love to you, too!

[euphoniaa]

Susan, I have Porphyria, as you may remember, or not. Porphyria makes it hard for me to take many drugs (not all) and many supplements. It also causes digestive disturbance unless one is very careful to avoid many things which are porphyrogenic.

In addition to this, I too have this odd condition, which does not seem related to porphyria, of not being able to handle Omega 3's when they occur as singularities (i.e., apart from their normal occurrence, in small quantities, in some foods). I cannot even handle them in salmon, flax, or other natural foods where they occur in large quantities.

However, I can take 600-800 mg of Twinlab Allergy D caps! I upped the dose when reading about my need for D here on this forum, and after a naturopath tested me as having l5% of normal D.

I also must avoid sun because of porphyria, although one type of porphyria allows sun exposure (a different type from mine). In the Pacific N.W. where the sun was scant, I could tolerate l0-l5 minutes outside on a semi-cloudy or overcast day.

I have learned that some supplements are absolutely needed for me, to take the place of the drugs I cannot take because of Porphyria. These are at least l000 mg of Magnesium a day to stop myoclonus, 200 mg of E complex to stop burning legs, l000 mg of Calcium to stop foot and leg spasm and other spasm, and 250 mg of non-flush niacin to stop vascular spasm. In addition I have found other supplements I can take in the way of One-a-Day, Lutein, and others. All of these agree with me, although I spent years taking vitamins and minerals which did not. I'd be rich if I hadn't had to experiment with this and with trying to find a suitable place to live. If only KNOWLEDGE was in the doctors' lexicon. You can find the knowledge eventually, but it may decades.

With your symptoms I would suggest you read about Porphyria. It is a possibility. Not a certainty, but you can hardly deny yourself the knowledge about it. I re-emphasize that reaction to Omega 3 is usually NOT a part of porphyria.

I also have Essential Thrombocythemia, but I am not certain this has anything much to do with any of the above except this: In ET, as in MS, it is advisable to avoid red meat, any red meat.

I have been on the Swank MS diet for over 20 years and low saturated fat diet is a must.

Bless you, poor Pilgrim.

Mariel


Aw geez, Mariel, it's amazing how many physical ailments you have to cope with. I've had long chats with Jeanie, too, and the three of us are just complete medical messes. I do try to read your posts, because I have a lot of your same sensitivities. And I've found the same relief from diet that you have, I think.

The interesting thing is, except for the MS, I don't think we even have the same issues. I think that the reason no two MS patients have the same disease is that we all have some sort of distinctive personal combination of diseases. I have to say that even after 35 years of it, on deeper inspection my MS has never been responsible for my nastiest medical crises. It's just always there to make those crises more challenging to deal with.

Best of luck to you in dealing with yours.

[ainee]

Susan - I wasn't diagnosed with MS, but my symptoms were similar.
I did some experimentation and found a couple of vitamins (and a few other simple things,) suppressed my symptoms for a few hours - then after 18 months of experimentation, research, trial and error, my symptoms started to reverse. I still have some slight symptoms but am reasonably well, most of the time.

I took 250mgs Vitamin B1 - 3 times a day as suggested on the bottle.
I also experimented with Vitamin C - 1000mgs - 3 times a day as suggested on the bottle.
Because of my weight, I found I had to gradually increase the dose quantities - VB1 to 500mgs per dose and the VC to 3000mgs per dose.

VB1 and Vitamin C, are water soluble vitamins. I found they increased my breathing 24/7 - and by increasing my breathing, it increased my oxygen intake and oxygen circulation to repair most of the damage to my nervous system.

A friend with MS, tried 250mgs Vitamin B1 - 3 times a day - she had less shaking and she seemed to be better in her self. She only took the VB1 for a couple of days, as she was on other medication.
A man with MD also found VB1 helped when he was taking it.

I tried many different things together - but found I needed to take only ONE treatment at the right dose per my body weight.
I ended up taking my treatments 4 times a day. I've thought about this recently, and now believe any ONE of my treatments, 6 times a day would give a better coverage and outcome.

Excercise and heat treatments - and sitting in the sun - increased my breathing also - but only for a short time til the respiratory system levelled out, then it was back to square one.
A good diet is OK, but by the time the food is picked, stored, cooked, then eaten, it may not have the total food value in it that we expect it to have.

By taking the Vitamins, and the other things - several times a day, I knew I was getting the right dose and quantity to suppress my symptoms. It took a lot of experimentation, but it was all worth while, as I now enjoy my better health.
ainee.

[Mariel]

Susan, Ainee, I too take B1, but l00 mg at dinnertime is enough to potentiate my magnesium and stop my myoclonus. I have experimented with taking more, but I got too hot.

These vitamins and minerals really do have strong effects. They are not placebos.

Susan, I like your thought that you are having a healthy year considering how old and sick you are. In some ways I am healthy, and that enables me to live on in spite of the various ailments.
I too believe that food we eat has an enormous effect. I have proved beyond a doubt that for me cutting out much saturated fat is necessary. I get the MS symptoms such as staggering, increased spasticity, and shakiness if I eat saturated fat. Of course we all get some saturated fat if we eat even white meat poultry, which is on the Swank diet, but Swank suggested we keep it below l0 or l5 grams (was it grams?) a day, which is very low compared to the average diet. If I eat red meat, as I ate lamb at a potluck recently, I will feel really sick for days. I am not used to eating such things. I find that for me a saturated fat such as butter, if I get a little in a
sweet bread from the health store, is no where near as damaging as red meat. Likewise, I can eat a little saturated fat in the 2% cottage cheese I buy at the health store. I mix a little of the cottage cheese into the good quality non-fat yoghurt I buy there, and add some jam, and it's delicious. So I may not do Swank completely perfectly, but well enough for me.

[Braindead]

Well hiya, Jack! Don't be shy...why don't you tell us what you really think for a change? :)

Now maybe you (or anyone else) can help me out here, though. What are these other ingredients in my vitamin D going to do to me: Dicalcium Phosphate, Cellulose (Plant Origin), Vegetable Magnesium Stearate, Croscarmellose, and Cellulose Coating? There's no reason for pure vitamins to make me as SICK, SICK, SICK as they do instead of BETTER, BETTER, BETTER.

I'm glad to see you're still around and kicking though...well, as long as you don't kick me too hard. :)

Well Hello fellow sickie! I suggest you get rid of that cheap Vitamin D3.

I checked my Vitamin D3's label and it looks A-OK to me..

"Supplement Facts
Serving Size 1 capsule

Servings Per Container 250

Amount Per Serving
Vitamin D3

1000 IU

Other ingredients: :)rice flour, :)sucrose, :)dl-alpha tocopherol, :)corn starch, :)gelatin, :)water.

Contains soybeans. Contains corn and rice. This product contains NO milk, egg, fish, peanuts, crustacean shellfish, tree nuts, wheat, yeast, or gluten. Contains NO artificial sweeteners, flavors, colors, or preservatives."

http://www.lef.org/newshop/items/item00251.html

Braindead

p.s. That one 1,000 IU recommendation is for "normal folks" not us sickies.

[Virginia]

Hi Susan,

Glad to see you again. So sorry to hear about your Mom.

I have been taking Vitamin D3 since early after my diagnosis almost 8 years ago. The last visit to my Neurologist was interesting. He told me that almost everyone with MS has low Vitamin D. He tested mine and I guess since I had been taking it for soooo long it tested alright, but he wanted me on a little more, so I upped my intake from 800IU a day to 1600 per day. He will test me again in 3 months, and said that I could not become toxic in that amount of time.

I take TwinLabs Alergy D caps, and have from the beginning. I even have a health food store order them for me if they are out, because I don't like to switch from a tried and true. I don't do many other alternative things for my MS. Just the Vit. D and Omega 3s. I do take calcium and magnesium for my bones as ordered by Doctor and that's it for me.

Glad to see you around, and please stop in more often. You DO sound busy.

Virginia

[euphoniaa]

Well, I guess I can now end my latest vitamin fueled fiasco. I just spent hours in the bathroom, beginning with one of those close call, surprise bowel attacks that hit me on the 5-minute drive home from work last night. And I had SO enjoyed feeling like a normal person since giving up vitamins altogether months ago. Maybe I'll look for a purer version and try Vitamin D again in the future. I know you Vitamin Guys (Ted, Braindead especially) don't quite understand my reactions, but I'm sure Mariel knows exactly what I'm talking about.

************
And... Hello, Virginia...It's great to hear from you! I really enjoyed getting together with you and the other Leafwatchers last fall. I've actually met 3 of the posters on this thread (you, Jeanie, Braindead) -- at 3 different events. I have to recommend these meetups to everyone and hope to go to future ones.

It sounds like your vitamin regimen is working for you, so that's good to hear. Both you and Mariel recommend Twinlabs Allergy D caps, so I think I'll look for those around here. I'm not too good at online shopping.

**********
And Ainee... I appreciate your input and I know you've got these really specific regimens that you recommend for the full spectrum of generic nerve conditions all through the forums here at Braintalk. But we are all diagnosed with specific nervous system diseases that present themselves in different ways and often need to be treated differently.

In fact, in my case MS is -- for the most part -- the least of my problems. Also, my body just doesn't like for me to DO stuff to it. In general, my body rebels against much of what I swallow -- food, vitamins, supplements, meds. That's not a nerve problem. I do tend to go with whatever seems generally healthy, and avoid traditional pharmaceutical approaches, and THAT'S what works for me. Every single one of my "symptoms" (and I have plenty of them) could be caused by an issue other than MS.


**********
So...I trudge on through my weird, busy life, accepting and adjusting and avoiding -- and doing a lot of laughing on the way. I wish the best to everyone. :)