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I think they key is dosage and knowing what to test regularly in the blood. If only more neuros where open to this...
I hope, people will give you an adequate answers and hopefully good results with existing patients.
Please let us know if they answer back.
Regards,
danirs
Re: Vitamin D testimonials from sufferers from Brasil
Posted: Mon Dec 23, 2013 2:17 pm
by Squeakycat
Very skeptical that high-dose vitamin D3 has a major impact on MS. If you look at the latest update to the Facebook page, it is now saying high-dose vitamin D3 with betaseron works to reduce MRI lesion counts which is not a good measure of the impact of MS on patients.
The recent study by Colleen Hayes found that there is something in MS that blocks the conversion of the circulating form of vitamin D3 to the bio-active hormonal form of vitamin D, calcitriol. To the extent that this is also true in MS, not just EAE, then no amount of vitamin D3 supplementation is going to have a significant impact on the disease.
A group of us are working to promote and fund proper clinical trials of the Hayes protocol to determine what dose of calcitriol is needed in pwMS and the safety of that dose.
In her EAE study, the combination stopped EAE and kept it in remission in 100% of her mice. Her evidence is solid science, not anecdote, but the question still remains on whether this will work in pwMS.
High doses of vitamin D3 have been tested to as much as 280,000 IU/week without significant impact on MS.
In a 28-wk protocol, 12 patients in an active phase of multiple sclerosis were given 1200 mg elemental Ca/d along with progressively increasing doses of vitamin D3: from 700 to 7000 μg/wk (from 28 000 to 280 000 IU/wk).
Re: Vitamin D testimonials from sufferers from Brasil
Posted: Mon Dec 23, 2013 9:09 pm
by want2bike
Many people claim good results from vitamin D but your will have a hard time finding anything positive by the medical community. AMA, FDA, and any of the government agencies are just interested in selling their drugs. They like confuse the issue with statements like "It's promising but we need more studies". There is never going to be enough studies showing vitamin D is effective because they can't make any money selling vitamin D. They are interest in making a profit with their drugs not making you healthy so you do not need their drugs. All the holistic doctors recognize the importance of vitamin D. Anyone with MS should understand vitamin D is important.
Re: Vitamin D testimonials from sufferers from Brasil
Posted: Mon Dec 23, 2013 10:22 pm
by NHE
Here's something that your neurologist and the pharmas won't tell you.
Pierrot-Deseilligny et al. 2012 reported that every 10 nmol/L increase in 25-OH-D level, up to 110 nmol/L, was associated with a reduction in the relapse incidence rate of 13.7%.
A mere 30 nmol/L increase in 25-hydroxy vitamin D3 puts it in the efficacy range of interferon beta1a with a 41% reduction in relapses. The side effects are nonexistent and the cost is spit in a hurricane in comparison.
Re: Vitamin D testimonials from sufferers from Brasil
Posted: Tue Dec 24, 2013 8:03 am
by DougL
NHE wrote: ... spit in a hurricane in comparison.
LOL, never heard that before
Re: Vitamin D testimonials from sufferers from Brasil
Posted: Fri Aug 28, 2015 4:52 am
by bitinfo
NHE wrote:A mere 30 nmol/L increase in 25-hydroxy vitamin D3 puts it in the efficacy range of interferon beta1a with a 41% reduction in relapses. The side effects are nonexistent and the cost is spit in a hurricane in comparison.
betaseron/41% reduction + vitamin d 30+ nmol/l = ?
Re: Vitamin D testimonials from sufferers from Brasil
Posted: Sun Aug 30, 2015 6:56 am
by vilnietis
High doses of vitamin D3 have been tested to as much as 280,000 IU/week without significant impact on MS.
Squeakycat, 280,000 IU/week could be just to not enough. Besides, "the number of gadolinium-enhancing lesions per patient (assessed with a nuclear magnetic brain scan) decreased from the initial mean of 1.75 to the end-of-study mean of 0.83 (P = 0.03).". Isn't that the goal of all DMDs?
Usually, Coimbra patients takes 60,000 IU per day + Riboflavin + Magnesium + Oil fish + vitamin K2. All components are need to optimize vitamin D absorption. That means at least 420,000/week. I myself take this amount. Since March, don't have any relapses, don't have any symptoms, don't have any fatigue related issues, don't have bad days. Coincidence? You can decide by yourself.
Re: Vitamin D testimonials from sufferers from Brasil
Posted: Sun Aug 30, 2015 6:58 am
by vilnietis
And of course everyone is already aware of this trial: