Vitamin D--anyone taking it??

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voodoodoll
Regular Member


Date Joined Mar 2014
Total Posts : 49
   Posted 3/28/2014 10:06 AM (GMT -6)   
I keep reading on various sites of people taking vitamin D supplements & that it helps MS. I asked my neuro about it when diagnosed & he told me it has no effect on it. I don't even take a multivitamin at this point, but thought maybe it would be a good idea. Any input??

Bad Mojo
Regular Member


Date Joined Aug 2010
Total Posts : 70
   Posted 3/28/2014 12:39 PM (GMT -6)   
I take 5,000 mg of vitamin D3 per day. Not sure how much it helps but it's cheap and I figure it cant hurt. All of my doctors felt it was worth taking. I also take calcium and magnesium supplements daily and I consume about a half-teaspoon of cinnamon every day too. My father does not have MS, but his doctor recommended he take vitamin D supplements as well.

LearnLyme
Regular Member


Date Joined Aug 2013
Total Posts : 332
   Posted 3/28/2014 12:54 PM (GMT -6)   
My neuro told me to take 2000IU daily, but I take 10,000IU daily. From what I researched, toxicity is around 500,000 to 800,000 IU daily. I have seen daily pills up to 20,000IU that can be purchased.

I read an article about a year ago where UK doctors were using D3 solely to treat MS. It was IV d3, but D3 nonetheless.
08/12 - LabCorp WB Lyme positive for bands 23/41, but CDC negative
12/12 - Diagnosed with Remit/Relapse MS (lesions and sensory numbness)
10/13 - Igenex/CDC Lyme Positive - 23-25, 31+++, 34, 39, 41+++, 83-93

My Story: http://www.learnlyme.com

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3565
   Posted 3/28/2014 4:39 PM (GMT -6)   
I take 5,000 IU a day as well. This was suggested by my neurologist.
Diagnosed with MS July 2006

I have no lesions on my soul and so I live with no limits.

voodoodoll
Regular Member


Date Joined Mar 2014
Total Posts : 49
   Posted 3/28/2014 4:43 PM (GMT -6)   
Thanks! When I have my next MRI & follow up appt in May I will ask him again.

Eliza_T
New Member


Date Joined Feb 2015
Total Posts : 14
   Posted 2/9/2015 7:03 PM (GMT -6)   
My neuro prescribed 50000 IU once a week because my vit. D levels had gone down to 12. He prefers for his patients to maintain a level of at least 80. I have been taking it for several years now and indeed it had risen to about 70. But lately I have had several other health issues - I don't if those cause my levels to start dropping again - so my neuro told me to double the dose; not in IUs but frequency. So I now take the capsule (same 50K IU) twice a week. However, it is still dropping and is now down to 33 even on twice a week dosage.

I have tried most every medicine (not even IV steroid as temporary relief during relapse) out there including Gilenya and had to stop taking because I had adverse reaction to each of them. I was diagnosed more than 8 years ago and have relapse of some form almost every other year like a clock-work. It lasts anywhere from a year to year and half.

-------------------------------------------------------------------
Diagnosed in 2006 - main complaint for which I saw my PCP was vertigo/ lightheadedness.
Like MS, it keeps me constant company.
Advantage of having MS for me - when I stopped working because I couldn't handle stress, I thought I will go crazy because I LOVED my job. Instead, I discovered liking to several hobbies and have gone back to writing which had stopped completely for over 25 years with hectic and stressful job and family! Just as I could not have a better neuro, I could not have a more loving and supportive spouse!

Just as you never know what to expect from having MS, you never know what you will discover within yourself unless MS affords you time to try things :LOL:

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3565
   Posted 2/10/2015 8:12 AM (GMT -6)   
Since vitamin D is technically a hormone and not an ordinary vitamin, it's quite rare and difficult for one to overdose. A day at the beach can equal 50,000 IU of the stuff. I've read some research that stated nearly everyone is low in vitamin D.

Eliza
I'm concerned about your low levels even with supplementation. That's scary stuff. One thing that helped me was dark green leafy veggies sautéed in clarified butter. Vitamins A, D, E and K are fat soluable. These won't be absorbed as well unless fat is digested with them.
Diagnosed with MS July 2006

I have no lesions on my soul and so I live with no limits.

eat2bwell
Veteran Member


Date Joined Sep 2014
Total Posts : 534
   Posted 2/11/2015 8:20 AM (GMT -6)   
Vitamin D is the sunshine vitamin and nearly everyone is deficient. It is best to have your vitamin D level checked. Thought I was OK because I was eating salmon and taking cod liver oil. You can't get enough of this vitamin from food. When I had mind checked it was 19 ng/ml. The recommended range is 30 to 90 ng/ml. My believe is people who are sick need more vitamin D. I started taking 5000iU a day. Got my level up to 72 ng/ml. The preferred form of vitamin D is D3. It is oil soluable so make sure the supplement is in an oil base. There is evidence that increasing your vitamin D level can improve MS symptoms. If you get the vitamin D from the sun there will be no problem of overdose. If you take a supplement it is recommended that you take vitamin K2 and magnesium alone with it. This vitamin and mineral works together with vitamin D to distribute the calcium properly. Here is an article explaining the importance of vitamin D.

http://www.naturalnews.com/027345_Vitamin_D_exposure_sun.html

voodoodoll
Regular Member


Date Joined Mar 2014
Total Posts : 49
   Posted 2/11/2015 10:16 AM (GMT -6)   
I've been taking 4000 daily for the last 3 months and mine went from 21 to 50 so I'm staying on the 4000 daily. I know they say Multiple Sclerosis isn't hereditary...but....they do say it's due to life style. So, has anyone with multiple sclerosis demanded their children's primary care physicians to check their children's vitamin D levels?? I am wanting to do this...but didn't know how difficult it would be since my children do not have symptoms of multiple sclerosis. I would just like to take any preventative measures I can for them.
***********************************
Diagnosed with MS Feb 2014
Copaxone injections Mar 2014
Pars planitis both eyes Nov 2014

Eliza_T
New Member


Date Joined Feb 2015
Total Posts : 14
   Posted 2/11/2015 10:57 AM (GMT -6)   
Thank you, Gretchen! Yes, I am worried also about dropping vit. D level. And it is true that it is linked to your MS symptoms - that is why my neuro wants my levels to be at least 80 at all times. Last year has been very rough with several different health issues and that prevented me from having an active lifestyle. Plus, I cannot tolerate being in Sun at all - I get severe headache and increased bile secretion. For past several months, I am also suffering from chronic cough from GERD and hence my sleeping pattern has totally been destroyed. I can't lie down, can't sleep even sitting in recliner or propped for long so it is hard to get early morning sunlight. But you are right, I need to find out what I can do.

voodoodoll - I am not sure Vit. D level is alone sufficient to make a judgement whether your children may get MS (I hope and pray they or for that matter, nobody does!!!) plus low Vit. D level is not a definitive cause for MS. As far as I know, there is no consensus on what causes one person to get MS. But I think for healthy kids (or kids to be healthy wink) there is no harm in letting them play out in open air and may be even get a little dirt. We as society care too much about cleansing and washing and remaining clean. Some exposure to natural elements helps to improve immunity, in my opinion.

voodoodoll
Regular Member


Date Joined Mar 2014
Total Posts : 49
   Posted 2/11/2015 12:24 PM (GMT -6)   
My kids are both in their 20's so probably wont be outside "playing" lol. The only thing the doctors have found for me is the low vitamin D---otherwise i am perfectly healthy so they were very surprised when I was diagnosed with MS. 😞
***********************************
Diagnosed with MS Feb 2014
Copaxone injections Mar 2014
Pars planitis both eyes Nov 2014

Eliza_T
New Member


Date Joined Feb 2015
Total Posts : 14
   Posted 2/11/2015 6:34 PM (GMT -6)   
My bad, voodoodoll - I am sorry for presuming they were younger children. You are right, that was stupid advice on my part turn

lymedisease1 - what you say is absolutely right - as one goes north or south away from equator, prevalence of MS is more. Unfortunately, not enough research reaches southern hemisphere but when writing one of my science fictions, I was researching about Argentina and that is when I realized the disparity of attention.

The problem is there is empirical data about vit. D and MS however, as yet, no exact cause has been determined. There are just theories. And doctors have been able to isolate several dozen genes that seem to be related to MS. But that's about it!

And I think for being healthy, we all need to include all important vitamins, minerals and micro-nutrients. Personally I always prefer to get as much as I can through food but when you have a life-long companion like MS, supplementing it does become necessary. Your advice of getting supplements gluten-free and with no preservatives is really good! For GERD, I was initially given a med and my psoriasis started flaring up. When I researched more about the med, I found it uses Parabyn for preservative. I immediately informed my doctor and he changed the prescription.

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3565
   Posted 2/14/2015 8:02 PM (GMT -6)   
Like Eliza has said, the THEORY is that MS is autoimmune. MS' exact epidemiology is unknown.
Diagnosed with MS July 2006

I have no lesions on my soul and so I live with no limits.

jaminhealth
Regular Member


Date Joined Feb 2015
Total Posts : 250
   Posted 3/4/2015 6:40 PM (GMT -6)   
My sister is declining with the MS she has been dealing with and she told me about the criticalness of Vit D in 2006...she's on East Coast and I'm in Calif...and NEVER ever thought I'd be deficient in Vit D and when I tested, GOOD GRIEF....I was about in the tank...everyone sits at computers or tv and hardly in the sun for LONG periods...

Before I came in from the Sun in my early 50's, I'm sure I was never deficient as I spent hours on the beach every weekend and every vacation was at beaches except London one year......

Millions are deficient and it's very very sad...take drugs for so much they may not even need but not getting help by inexpensive Vit D3 and K2.....J
OA from age 18 to late 70's....complications from hip replacement in 2010...such a terrible outcome.
Fibro dx in 1999

All all the other "stuff" most deal with....I take 95% supplements for my health care...
Grape Seed Extract and or Pycnogenol have been lifechanging for me, 20 yrs on them soon.

Love the SOM and AA Principles....

Keep it Simple, Progress Not Perfection, One Day at a Time..

zasz
Regular Member


Date Joined Feb 2015
Total Posts : 51
   Posted 3/8/2015 4:01 PM (GMT -6)   
people in northern latitude controls have less sun exposure, because of the weather there. Wearing clothing also blocks uv light from touching your skin. from my understanding your body needs at least full body exposure to produce maximum d3 results.

jaminhealth
Regular Member


Date Joined Feb 2015
Total Posts : 250
   Posted 3/8/2015 5:07 PM (GMT -6)   
I might add that prior to hip replacement in Oct 2010, I had gotten my level to about 80, from a puney 16 in late 2006....and I was aware that D levels could drop with a surgery, via Vitamin D Council, well, I was anxious to see if my levels did fall and sure enough they fell about 40 pts with that surgery.

So if and when any surgery, a good awareness....jam
OA from age 18 to late 70's....complications from hip replacement in 2010...such a terrible outcome.
Fibro dx in 1999

All all the other "stuff" most deal with....I take 95% supplements for my health care...
Grape Seed Extract and or Pycnogenol have been lifechanging for me, 20 yrs on them soon.

Love the SOM and AA Principles....

Keep it Simple, Progress Not Perfection, One Day at a Time..

Chris_1234
Regular Member


Date Joined Mar 2015
Total Posts : 85
   Posted 3/10/2015 9:05 AM (GMT -6)   
http://www.vitamindcouncil.org/about-vitamin-d/testing-for-vitamin-d/# - units are in standard. You will need to do a conversion if your country has adopted the metric system.

People with MS should be shooting to be at the upper range of sufficient.


First and for most, have your vitamin d blood levels checked.

Research has proven vitamin d beneficial in many diseases, MS being one of them.

Health Canada will no longer pay for vitamin d level blood tests (unless you are ill or have a disease) because they have declared everyone in Canada is vitamin d deficient.

If you do not have a balanced diet you'll probably want to take a vitamin k2 supplement along with your vitamin d3.

Chris_1234
Regular Member


Date Joined Mar 2015
Total Posts : 85
   Posted 3/10/2015 9:06 AM (GMT -6)   
https://www.vitamindcouncil.org/further-topics/i-tested-my-vitamin-d-level-what-do-my-results-mean/#

Luvmyboys9900
New Member


Date Joined Apr 2015
Total Posts : 1
   Posted 4/18/2015 11:29 PM (GMT -6)   
I am on Vitamin D 4000. My neuro wanted me on it. I don't feel different yet but my OB was very happy my vitamin D was up high.

Chris_1234
Regular Member


Date Joined Mar 2015
Total Posts : 85
   Posted 4/20/2015 9:28 AM (GMT -6)   
luvmyboys9900,

It's not how much Vitamin D you are supplementing that should be any concern. Its how much that is actively in your body. You need to have your Vitamin D blood levels checked.

eat2bwell
Veteran Member


Date Joined Sep 2014
Total Posts : 534
   Posted 4/21/2015 4:01 PM (GMT -6)   
Yes we should all have our vitamin D level checked with a blood test. Very important for good health.

AnnieInArizona
New Member


Date Joined Oct 2014
Total Posts : 11
   Posted 5/1/2015 2:32 PM (GMT -6)   
You can get the 50,000 IU dose from Amazon, Biotech makes it. You would not want to take it daily, but if you usually take 5,000 IUs a day you can take 50,000 IUs every 10 days. It's the cheapest way I have found to purchase it.

Bad Mojo
Regular Member


Date Joined Aug 2010
Total Posts : 70
   Posted 5/1/2015 11:35 PM (GMT -6)   
It is cheapest if you can get your dr to prescribe it. From what I've seen, most docs will.

GotHemi?
New Member


Date Joined Jan 2015
Total Posts : 3
   Posted 5/19/2015 3:51 AM (GMT -6)   
10000 IU DAILY FOR ME.....
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