My experience with high doses vitamin D

[dulceemira]

hi all,

I just wanna share my experience with d3.
I live in Europe but I discovered this treatment on internet actually..one day I saw this video , I begun to talk with pacients who are doing this protocol, on facebook or mail, I discovered the treatment, I made an appointment with the doctor. His name is Cicero Galii Coimbra, he is neurologist and lives in Brasil, Sao Paulo.

I am taking a really high dose d3 (60 000 ui d3 daily..the dose is calculated for me, in base of my situation, my disease history, my simptoms, my weight, my pth level, my tests result).To avoid hypercalciuria, I must drink daily 2.5 lts water (these higher quantity of liquids assures a urine volume around 2500 ml which allows calcium dilution eliminated in the urine and avoids excessive concentration of urinary calcium - as when calcium is diluted it does NOT get deposed in the kidney, preserving renal function), I must not eat dairy products, not take calcium supplements and not take nephrotoxic drugs. And I must avoid stress and infections.

U must understand that vitamina d is not toxic, the problem is the calcium, who must be controlled. I make more tests, but the most important is the calcium in the urine in 24 hours. If someone tells me that he took d3 and had no effect, I will tell him that he did not took the right dose, not mainteined a certain d3 level.

In 2012 I had new lesions, new simptoms, I could barely walk, I had big equilibrium problems, I felt so tired,my edds was 4.5.
I am following this treatment by more than 16 months, and I had so many improvements. Actually in july this year I was able to go alone in Brasil to my appointement, I don t have equilibrium problems anymore, I don t wake up tired anymore, I can walk without help where I want..who sees me, does not think that I have MS or any disease...I have a normal life again...
This december, on 11 december, I did my MRI. Result: no new lesions, no active lesions, so no relapses. It's my first MRI with such a short answer. Every day I just feel better. This is my first December, since I discoverd MS, when I am not in the hospital doing 3 or 5 grams of cortisone. In general in the past I had every year 3 or 4 relapses.. This is the first time when from more than 16 months I had no relapses..I just did not knew in all this years how is not to have relapses, I just got used to those..

I DON'T suggest anyone to take such a big dose without a doctor's supervision, but I suggest to do more research on vitamin d. I also did a facebook page with good studies and articles https://www.facebook.com/pages/Vitamin- ... 70?fref=ts

please do the test 25 oh d3 to see the d3 level, because u would be surprised how many of u are deficient. and pls do more research on PubMed or Scirus.com

this is my experience and I ask u to respect it..
http://mscure.aussieblogs.com.au/the-bl ... eatment-3/ this is a blog in english of a pacient of Coimbra who lives in Australia..

wish u all all the best and a happy new year!!!:)

[leonardo]

you take a very big dose of d3. what's your blood level now?

I have issue with vitamin D supplementation, I have correct level of d25OH but high calcium, I will have follow your suggestions and to try drink more water because I usually drink no more than 1 liter per day (I avoid drinking much because of frequent urination/continious UTI).

[dulceemira]

Hi, although I have a very high d3 level, more than 200 ng, my calcium levels are in the normal range, because I have a good hydration and I don't eat dairy products and I do not take calcium supplements.. and that's the idea: ms will enter in remission at a level of minimum 160 ng d3..pth must be under 20, and the calcium must be in normal range..the most important is the calcium in the urine in 24 hours...but this is a treatment that must be done only under a doctor's supervision...there are a lot of "rules" that must be respected..

http://ajcn.nutrition.org/content/86/3/645.long u can take without problems 10.000 ui D3 daily "Within 15 min of full-body exposure at midday during the summer, white adults can produce vitamin D equivalent to an intake of 250 μg (10 000 IU) (30). In summary, we have shown that serum concentrations of 25(OH)D in the range of 400 nmol/L (160 ng/ml) can be attained without causing hypercalcemia or hypercalcuria, and they do not cause adverse clinical or paraclinical effects. These findings are encouraging for larger-scale clinical trials in MS and in other medical conditions that may respond to vitamin D. The present study provides an objective confirmation that the recent proposal by Hathcock et al is appropriate—ie, a UL of 250 μg/d (10 000 IU/d) for vitamin D intake can be justified".

[brm]

Thank you very much for posting this information, dulceemira. I find it all very interesting!

I came across some other interesting articles, not about really really high vitamin D doses, but still high. The first one is called "Effect of High-Dose Vitamin D3 Intake on Ambulation, Muscular Pain and Bone Mineral Density in a Woman with Multiple Sclerosis: A 10-Year Longitudinal Case Report" and can be found here:http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3497336/. It's about a woman in the Netherlands who was diagnosed with MS in 1990 (but had symptoms long before that) who started vitamin D therapy in early 2000. After a few years she started taking 6000IU/day. Over the course of approximately 10 years she regained much of walking ability she had lost in the 90's.

The second one I wanted to share is called "If I had clinically isolated syndrome with magnetic resonance imaging diagnostic of multiple sclerosis, I would take vitamin D 10,000 IU daily: Yes" and can be found here: http://msj.sagepub.com/content/19/2/137.long. An interesting read by Dr Correale, the same person who wrote a few very nice articles about the effect of hosting helminths on people with MS.

[THX1138]

A client emailed that he heard a doctor on a talk show recommending 5,000 IU of Vitamin D instead of the RDA of 400 IU. He asked me what I thought.

I said that everyone thinks there’s a Vitamin D deficiency epidemic but I’m not convinced. The big question is, why all of a sudden are we so deficient. What could Vitamin D be responding to and what do the low levels indicate?

Here’s one possible answer. Vitamin D is really a hormone with a feedback loop to calcium. When the body has enough calcium less Vitamin D is required and the levels drop.

We are a calcified country, so the effect of high calcium may be lower levels of Vitamin D. And without understanding the complex chemistry involved, most people think we just need to take more.

But MORE Vitamin D pulls in more calcium and bumps out magnesium, making people more magnesium deficient.

Taking high dose Vitamin D (anything above 2,000 IU) will also use up your magnesium because this mineral is required to change the supplemental/storage form of Vitamin D into active Vitamin D.

Not everyone is going to suffer from too much Vitamin D and enough people seem to benefit from it (at least in the short term) that it’s not going to ring any alarm bells for many years. After all, it took about 3 decades for us to realize that high dose calcium supplementation was causing heart disease and soft tissue calcification when not properly balanced with magnesium.

Do your research before taking high dose Vitamin D. Google the benefits AND the dangers before you make a decision. If you do a Vitamin D blood test, remember a mid range level is better than a high level.

http://drcarolyndean.com/2013/03/too-much-vitamin-d/

[lyndacarol]

EXCELLENT information, THX1138!

I am convinced that my kidney stone "adventure" came as the result of taking 8000 IU of vitamin D3 daily for a year and a half. For me, high doses are a bad idea.

[jimmylegs]

sounds extremely plausible LC - we know the cal-mag ratio is an important balancing act, and personally i know magnesium saved me after my unbalanced high dose d adventure (which by the way happened while i was taking magnesium daily... just not enough. and there was calcium mixed in there with it).

we know that reports of hypercalcemia with high dose vit d3 also tend to have a calcium supplement in the picture.

i strongly suspect re the recent reports about higher heart disease mortality in those who take supplements that any increased risk findings would be related to consistent messaging re calcium and the prevalent availability and use of candy-like calcium chews etc.

[Ouuch]

hello guys. I would be interested in understanding something more of the Coimbra protocol. He says he look at the PTH levels as an indicator of the ability of the body to process vit D. But what actually is the PTH Coimbra test for? There are various PTH tests in laboratories. And what test he uses to check the calcium levels??

[PointsNorth]

Dr. Coimbra and his kin have treated 000's of people with autoimmune disease which of course includes MS. According to the research I've done he has experienced as incredibly high high rate of success. Most of the text/video I find must be translated from Portuguese. I suspect this is why his protocol has not reached North America/Europe in any meaningful way. I've had preliminary blood work done already and will continue to monitor. I will start the protocol this weekend.

I would hope a new thread is started in Treatments.

PN

[evelynne50]

Hi I have just been invited to join the Italian facebook page of patients taking very large doses of vitamin D.,though I live in Edinburgh.Its because I enquired after Dr Cicero's treatment of M.S with those very high doses. The Brazilian site put me on to the Portuguese site and then to the Italian one which of course has doctors much nearer to me some of whom are following Dr Cicero's example and treating their M.S. patients with equal success there. I have had M.S. for more than 32 years and have been on the Swank Diet for most of it and so have kept relatively mobile till about 5 years ago,when I started needing a cane. I am now 65 and worked as secondary teacher till I retired last year,so have kept well on that diet despite the fact that I am supposed to have the PPMS type.I recently had my first real flare,however in January after a bad virus,despite safely taking 10,000 of vitamin D every day for years and now I have new symptoms that I've had since August,though I can still walk though not as far.The M.S. hug is definitely the worst! If I can get a chance to go on these very high doses I certainly will. After searching out and reading all the pub med info and free research papers online on various tests of its safety under medical supervision,I am convinced that 10,000iu is fine and very important to prevent M.S. as Dr Cicero says should be taken by any one with a close relative with M.S.Thats achievable by only 10 minutes in the sun between 11am and three pm in sunny countries. It will take much larger doses to make sure the body has plenty left over from looking after your bones,to start healing your nerves.

[jimmylegs]

hi and welcome evelynne possibly interesting conversation on high dose vit d3 can be found here: http://www.thisisms.com/forum/chronic-c ... ml#p223430

[PointsNorth]

Hi Eve, welcome. I just PM'd you.

PN

[kengriff]

I have not taken high doses of vitamin D, I don't have any experience about taking of any vitamin orally. I used vitamin E for my hair, ad it is only for external use.

[zjac020]

I started taking vitamin D3 soon after my first and only relapse to date (which ocurred 18 months ago). I saw all the research on Vitamin D and MS and am still convinced they are linked.

I started on 1.000 IUs and worked up to 30.000 IUs daily. Then cut down to 15.000. Highest level of D3 ng was 180 a few months back. I have also notice (Jimmylegs you may remember this), that when Zinc and Mag were optimized, D3 levels increased to (clearly they are all working together).

I have always drank approx 1.5-2lts of water, and eliminated dairy and gluten from my diet upon being diagnosed.

I have discussed comencing the vitamin D3 protocol with the a clinic in Portugal that works with the Protocol. Based on my age, weight and PTH level I will start with 60.000 IUs. Clearly there is a risk and the protocol has to be carefully followed to avoid renal issues. It's hard to take such drastic actions to be honest, especially as I have made so many lifestyle changes after my diagnosis that I know have helped maintain me stable.

However, I think we forget that the odds are NOT in our favour. We cannot have it all. As with cancer, there will never be a unique miracle cure for this disease, I am convinced of that. Some "cured" their MS by treating heavy metals, others by treating candida, others by eliminating gluten, others with CCSVI, others with Vitamin D, others by treating Lyme...what that tells me is that the underlying cause in each case is different, I do not need clinical trials to see that. It is scary to work with such high doses of a hormone, but then I just need to read that Tecfidera has now been found to also cause PML, or see the statistics on how many people with RRMS go on to a progressive form of the disease, to realise that the risk is worth taking. We cannot have it all.

I do not think my 9 brain lesions will be resolved by high doses, as they are "old" and the neuros have no way of knowing when they appeared. However the only lesion that was ever active and that was found when I had the relapse was on the cervical spine, im curious to see what happens with that lesion.

If anyone wants more information, just PM me. And lets all remember that there is no holy grail to this disease. Unfortunately.

[jimmylegs]

yes i 'remember' that ;) i hope you continue to monitor both as you go forward with your increased vit d3 regimen!