Vitamind D in high doses (need to have answers)

New diagnosis and before diagnosis
1

Hello,

I saw on facebook forums that so many people taking Vitamin D in very high doses (i.e. in accordance to the Coimbra Protocol, and supervised by a doctor) are able to stay in long-term remissions and reverse pre-existing symptoms which appeared in the last 12 months before starting the protocol. There exists literally hundreds of amazing testimonies on these forums of people who completely reversed the course of their disease (i.e. completely halted the progression), and these claims are backed up by certified neurologists and doctors practising in the medical field. This is to the extent that in Brazil, people with autoimmune diseases literally regard the Doctor Coimbra as a national/worldwide hero (i.e. by the way, there exists many other doctors, in Europe and in the US as well, recommending this particular protocol). These testimonies are made by Americans, English, Brazilian, German, French, and plenty of other individuals coming from a wide spectrum of countries, so it is not just a ā€œhypeā€ in Brazil, even though the phenomenon seems to have a hard time penetrating Western countries, which are indeed remaining highly hermetic to the notion of high doses of Vitamin D.

Note that in the Coimbra Protocol, the doses of Vitamin D are adjusted to each individualā€™s own biological constitution, bu tend to range between 50,000 to 200,000 UI per day, which is indeed rather enormous.

My question is why isnā€™t there more studies being conducted on the potential of very high doses of vitamin D for PPMS and RRMS if results and testimonies (which are far more than just anecdotical) are in favour for the starting of controlled trials? Doctor Coimbra answers this question by saying that he does not want to conduct trials on people, as this would imply that half of participants would not benefits from the positive effects brought by Vitamin D, which according to him is unethicalā€¦

One of the only widely mentioned study regarding Vitamin D that I found is a recent study conducted by the University of Cambridge, which showed that Vitamin D (i.e. only 10,000 UI per day) is significantly contributing into the remyelinisation of synapses and further reduce by a high margin the rates of relapses in RRMS patients.

Why isnā€™t there more attention being given by individuals and pharmaceutical groups into Vitamin D then? I really wonderā€¦ Should I buy into conspirastionist theories, suggesting that big pharmaceutical groups or so-called charities that are financially backed-up by them have no financial interests into conducting studies linked to a natural product that cannot be patented? Maybeā€¦

In either cases, every time someone is being diagnosed with MS, it seems that DMDs are the only way fowardā€¦ Yet, when I go on Facebook forums where people take conventional DMDs, they tend to report lots of side effects, and sometime barely any improvements (i.e. it is true that many benefit as well, but rarely without any significant side effects).

I know that MS is a multifaceted disease, as we cannot really understand yet what triggers it, but it seems that a lots of people touched by this disease are profoundly deficient in Vitamin D, which has a lot of immunological functions, as suggested by the medical literature (i.e. the immune system is literally entangled to Vitamin D). Vitamin is safe in extremely high dose if the recipient is supervised by a well-trained medical practitioner and if calcium levels in the blood are well monitored (since very high levels of Vitamin D + calcium can lead to the calcification of certain organs such as the kidneys).

Anyway, I know that there are already some discussions existing about Vitamin D, but I didnā€™t see anyone yet raise the flag like I am doing now, which is why I would like to do it in order to have a discussion with as much points of view as possible.

For the note, I am not diagnosed, but had a history of neurological symptoms, which lead me to make extensive research on MS and other autoimmune diseases. I was first expose like most of people in my situation to the existence and potential of DMDs, then to HSCT, and then diets and Vitamin D in high doses. With all the knowledge that I have so far gathered, Vitamin D is definitively taking the first position on the podium.

Blue Marble

2

Hi Blue Marble,

The Coimbra protocol is also something Iā€™ve looked at in quite some detail and it sounds great. I also wonder if the big pharmaceutical companies are just making money from keeping people ill.

in my case, Iā€™ve decided to try a traditional DMD for now, as I still want to follow the traditional approach and give myself the best chances. However, the Coimbra protocol does sound really good and there are so many people who have been helped by it.

I am staying open minded for now. If I have bad side effects on the DMD, then I will seriously consider Coimbra.

Thanks

emily

3

The MS team at my local hospital are running a study on Vit D levels in MSā€™ers. I was supposed to start Aubagio months ago but following a holiday (honeymoon actually) in Italy, I came back feeling better than ever and have continued with my daily high dosage of Vit D.

4

Thanks to both of you for answering my post; hopefully this post will gather other interesting answers.

EmilyR, thank you for your honesty and for sharing with us your experience. I hope that your DMD will work to its best potential; if not, you seem to already have a plan B, which is great :slight_smile:

Nelster, if I may ask, what are the doses that you are currently taking, as the notion of ā€œhighā€ is obviously relative?

5

4000 IU for the summer months rising to 8000 for winter. Iā€™ve had my bloods taken today. One lot is for a study on MS and the immune system, the other is to report my Vit D levels. Iā€™ve got another MRI in March and if Iā€™m free of actvity, theyā€™ll leave it if not they want me on the Aubagio.

6

The problem with the Coimbra Protocol is simple - Not Invented Here.

Our member Spacejacket here has tried it, try a PM direct to her.
Just note that is is a dosage as a function of your weight, and when I looked at it, I would have been taking a heck of a lot of pills.

I have two comments:

  • Since I moved, I have fallen off the Vit D wagon - and my fatigue is getting worse.
  • Dr Coimbraā€™s reason for not doing trials seems a totally valid one.
    There is a way round this, you divide the participants in two. Half get the med, half get the placebo. Half way through the trial, you change the groups over. Given enough time, the appropriate measures of effectiveness and a good statistical approach and it can work.
    Now it is back to the original question.

Geoff

7

Dear Blue Marble,

Things are so slow re MS and neurologistā€™s. Not on MS treatments yet. Have been diagnosed with MS (July 17) by two different neurologistā€™s but am awaiting further NHS follow-up appointments.

In July I was getting depressed, saddened and angry and decided to follow ā€˜Overcoming MS 7 step programmeā€™ George Jenelik (sorry, know we should not promote).

Donā€™t know if it is helping but it does give me some control and some hope. As a result of the programme I take 10,000 iu (ten thousand) vitamin D3 each day. Recent blood tests show that my vitamin D is below average (so I donā€™t know where it is going!).

Going vegan plus fish and exercise has definitely helped with my bowels.

I am not a freak though and enjoy occasional chocolate!

warmest thoughts Ali

8

Iā€™ve been supplementing with vit D since I was first diagnosed earlier this year. I had it tested and my combined vit 2 and 3 levels are currently147. Iā€™ve therefore increased the dosage to 10,000 iu daily as I want it to be higher than 150, as recommended by Overcoming Multiple Sclerosis. I also take vitamin k daily as this helps with absorption and ensure it all gets taken with flack seed oil as this too increases absorption. I try to get out at midday everyday when uv is strongest. Iā€™m now a bit obsessed with vitamin D and think itā€™s important to go on a sun holiday in jan/ Feb to ā€˜stock upā€™. Iā€™ve reduced my dairy/ calcium intake to the bare minimum to avoid the calcification risks.

9

Dear Patience and Sahsha1, Thank you very much for your testimonies. Patience: I am glad that you have find a light in the sea, however dim this one might be for the moment. Regarding the Vitamin D, I have read that people with MS tend to not be really efficient in absorbing them (i.e. I invite you to check the science yourself by reading relevant literature; the Doctor Coimbra and his youtube videos is a good starting point), and that higher dosages are therefore often needed with certain supplements such as Vitamin B2, K, and magnesium, which all together create a micro biome in your system that promote the immunological functions of Vitamin D. Ali, instead of me explaining all of these things, I strongly suggest that you start reading about the Coimbra Protocol, and join Facebook groups linked to that matter, and you will learn so much from it. Also, you will see that so many people stories are extremely encouraging, reallyā€¦ I would then be curious to know what you think about it :slight_smile: Sasha1: If you are that already that willing to take supplement of Vitamin D and K, may I ask you why you havenā€™t tried the protocol? As after all, it would theoretically just require you to do some simple diet modifications and be monitored by a doctor (and price-wise, it appears to be relatively inexpensive in my understanding)? All the best to you two :slight_smile: Blue Marble

10

Hi Blue Marble

I have read up on Coimbraā€™s protocol and itā€™s something that interests me very much. At the moment I donā€™t have any active areas of inflammation, Iā€™m told, and I donā€™t have any MS symptoms other than Trigeminal Neuralgia which Iā€™m having surgery for. So beyond keeping a close eye on my diet and vitamin D levels, Iā€™m not sure I need to be on such a rigorous programme of supplementation. As you say, it does need to be under a doctorā€™s supervision and that has cost implications (as all private medicine does). I think Iā€™m on the right road at the moment for me, but itā€™s certainly something I would seriously consider if my situation changed and I felt it could be beneficial.

I do agree with you though as to the importance of vitamin D for people with MS and like you, it amazes me that more research hasnā€™t been carried out. From what I understand, nutrition and vitamins are not a core part of medical studies. Most people, in the UK at least, are apparently vitamin D deficient, but it would simply be too costly for the NHS to test everyone, so the issue gets ignored, often until too late for many MS sufferers.

11

When I had my last ā€˜bigishā€™ relapse Iā€™d heard about the protocol but as I was in the UK with no protocol Dr here I decided to do the best I could. The 1st thing I did was get my vit d tested - it was extremely low. I was prescribed 20000iu, k2 & folic acid for 12 weeks and tested again and was told I was fine. I was prescribed Tecfidera, but had to stop due to low lymphocyte levels. Iā€™ve now been on Aubagio since March but ive been having a few ms symptomsā€¦ Since 2015 I have also changed my diet to mostly vegan (I have the occasional non vegan meal or treat). I used to take 5000iu of vit d, but increased it also in March after reading that was the upper ā€˜safeā€™ limit. Due to recent symptoms and an appointment with my ms nurse she believes Iā€™m having a sensory relapse at the moment and my blood levels, including vit d, are being tested. I should get those results next week. Iā€™m rethinking the whole DMD verses the Coimbra Protocol at the moment.

12

My MS Nurse has written to say my Vit D level is 91.2, which is great

13

Well, since my last post on this thread Iā€™m in the middle of a relapse again! I finished oral steroids for hand weakness, sharp pain and numbness on Saturday morning and Saturday afternoon I started with Trigeminal Neuralgia which is accompanied with facial & neck numbness and no tastebuds. Yuk- I cant even enjoy a bit of tasty food to cheer me up! Only last week my vit d was 175mnol (max limit I believe) and have been on Aubagio for 9 months. I sent a mail to Michael Crawley in Ireland re the Coimbra Protocol. Iā€™m waiting for my MS nurse to call this afternoon so we can discuss what they are thinking. Wish me luck! Sharon x

14

Hi Folks

Interesting discussion here on Vit D. I was diagnosed about 18 months ago with RRMS and for this last 6 months have been on the DMT (Tecifedra), Gabapentin for pain relief and the Vit D complex Fultium (3200IU/daily). At the last follow up with my neuroconsultant, after a series of MRIs, I was informed my MS is currentky inactive and if anything in reverse.

Consultant could not say for definite why my results were so positive but they did seem to suggest it maybe the effect of the Vit D. Whatever only too glad to hear such news.

Regards

15

We often hear that whatever vitamin you take, if the body has too much it simply expels it. This being the case, excessive amounts of vit d will simply not be absorbed. This seems to be backed up by patienceā€™s comment

16

Thatā€™s not actually the case. Using Patience (Ali) as an example isnā€™t proof that you canā€™t overdose on vitamin D. The fact is that itā€™s just not known why some people, Ali included, donā€™t seem to metabolise a particular vitamin. Thereā€™s also a condition called hypervitaminosis, which is where people have too much of a particular vitamin. Specifically vitamins A, D and E. So while an excess of most vitamins is excreted, an excess of vitamin D is not. And can cause problems. (Eg kidney stones as recently reported by a forum member.)

So if you are taking high doses of vitamin D, you should have your levels checked to make sure youā€™re on the right dose.

Sue

1 Like
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I have my bloods done every 3 months so I assume any abnormalities will bed picked up from them. Regards

18

Hey, First of all, Sallum, wishing you good luck with the Coimbra Protocol, hopefully it will make the miracles that it does with plenty of other people. Bracknagh, while you should not necessarily take my view as such, it remains that in my understanding 3.200 Vitamin D per day is actually very low for someone with MS or another auto-immune conditionā€¦ Additionally, all the studies that I have read about Vitamin D in which patients notice an improvement directly linked to their daily consumption of Vitamin D are done with doses far bigger than 3.000UI (e.g. 10.000UI or more per day). Nonetheless, I am happy that you are seeing a stabilisation :slight_smile: Lastly, I just wanted to note that you donā€™t really overdose with Vitamin D, and it is not toxic per se. If you read about it (academic papers), you will quickly understand that calcium absorption, which is somehow happening proportionally to the quantity of Vitamin D present in the body, is the problem that may cause all sorts of issues such as kidney stones, etc. You can take enormous doses of Vitamin D (i.e. up to 100.000 UI per day) and just be perfectly fine if you have a diet that completely avoid diary products and foods enriched with calcium. If you donā€™t believe me (which is fair enough), I invite you all to read some academic articles on that matter (i.e. and not just rely on secondary platforms of information that you commonly find after one click on Google), and go on YouTube to see some experts talking about the so-called Vitamin D toxicity. Again, I am not a doctor, so please make inform decisions and do not solely rely on my words. On the other hand, I challenge you to come with empirical evidences going against what I am saying. Blue Marble

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Which is absolutely fine if you totally avoid all calcium containing foodstuffs. I donā€™t choose to. I think if you are following a strict protocol like Coimbra, then youā€™re OK, but itā€™s not really a good idea just to take tons of vitamin D without having levels checked and continuing to eat your fill of dairy products. Personally I would find life quite difficult without cheese in it (to say the least, thereā€™s also butter, cream, etc). I like eating well. So Iā€™m happy taking 5000iu vitamin D, eating my normal diet because I know the amount, of vit D is right for me. And fair play to anyone who is able to eat to live, follow a restricted diet, take all the associated vitamins and minerals etc and finds their physical health improved because of it. I feed my mental health by eating a balanced diet, taking a few supplements and maybe not having the physical benefits, but making the best of what Iā€™ve got.

Sue

20

Hi all, How are you all doing? I have come here for the same reasons as you all I guess, for answers and advice from those in the same position. So here goesā€¦ I suffered a stroke when I was 18 years old, after about one year I regained control of my life mostly it was tough and I went to every therapy offered to me. Life continued for the next 5 years and I graduated uni and got a job ect and tried to get on with my life. Around 2/3 months ago I began to experience numbness and pins and needle sensations in both of my legs. I could not feel my legs/feet at all. It feels like I have tight bands around my knees at the same time like I am walking through water. I am also experiencing difficulty in co-ordinating my foot stepsā€¦and controlling my bladder. The fatigue is so bad to the point I feel like I have lost control of my life. I have had to take some time off work (after much arguing with myself) until I find out what is going on. After A LOT of back and fourthing with my GP I was referred to a neurologist again. There is a lot I can say about the way I was treated and dismissed, but another time. I had an MRI scan of my spine which showed inflammation that has been there for a long time apparently and it was suggested that it looks like it could be MS. I was then referred for a LP, which I have had and am now waiting on the results for. Just before the LP I felt like my symptoms were beginning to lessen slightly, but after the LP I feel like they have gotten worse again. Maybe this is due to the stress of getting the LP ( I really worked myself up before, during and afterwards)? In hindsight an MS diagnosis makes sense to me now, I believe that I may have been dismissing the symptoms of MS as side effects from the stroke I had aged 18. This is an incredibly stressful time, both health wise and financially- Iā€™m sure everyone is in the same boat with this one. The lack of answers and advice from doctors in the meantime is infuriating. I have been referred for another MRI of my spine, this time with different dyes, and another MRI of my brain. Wishing you all well and sending positive vibes your way!