Vitamin D is a group of fat-soluble pro-hormones comprised of five different vitamins; vitamin D1, D2, D3, D4 and D5. Vitamin D is generally produced by the body after exposure to sunlight or is achieved (to a lesser extent) from your diet. There are not many, in fact, dietary sources of the vitamin, but among them we can mention cod liver oil, milk, eggs and leafy green vegetables. The known effects of Vitamin D substances are mainly on the metabolism of calcium and phosphorus in bone, the kidneys and intestines. Our bodies have an incredible absorption system for these substances, which is extremely important for a healthy body structure i.e. the skeleton and for normal neuromuscular activity. Recent studies also identify a strategically important factor in Vitamin D for immune system function. In fact, vitamin D in its form D3 (cholecalciferol), displays immunomodulatory actions and therefore has a role in inflammatory processes.
Some epidemiological data and prospective studies have shown that levels of vitamin D are generally lower in patients with multiple sclerosis, compared to healthy subjects. Other studies have also noted a correlation between severity of the disease (number of relapses, number of new lesions) and serum level of vitamin D in the patient. Thus, a lower level of vitamin D may constitute a risk factor for the development of the disease and may also worsen the symptoms of MS for those already with the diagnosis.
Vitamin D has received much attention recently, particularly from 2014 onwards, as indicated by the rapid increase in the number of publications that concern it. These publications suggest that vitamin D plays a crucial role in a large number of physiological functions. For example, vitamin D deficiency has been associated with many acute and chronic diseases including; disorders of calcium metabolism, autoimmune diseases, certain types of cancer, type 2 diabetes, cardiovascular disease and even infectious diseases.
A notable Brazilian researcher from São Paulo; Dr. Cicero Coimbra, has been carrying out a special Vitamin D therapy for some years now. He administers high doses of vitamin D to patients with multiple sclerosis and other autoimmune diseases, such as ulcerative colitis (Crohn’s disease), vitiligo, and Alzheimer’s.
On the website https://vitaminadperlasclerosimultipla.wordpress.com I found a lot of information on the research carried out so far by Dr. Coimbra. I describe the most here his most significant research and findings below.
“Vitamin D is in fact a hormone that has 4,500 receptors in immune system cells (each of which has a specific biological function). Therefore it is the most important immune-regulator that we have available. It is not an immuno-suppressant. Rather, the immune system gains strength and effectiveness under the effect of vitamin D, but it becomes unable to attack the body itself “- Dr. Coimbra
The high doses of vitamin D represent 95% of Coimbra’s treatments. These doses may be used only under medical supervision and in a laboratory setting, taking precautions to avoid complications such as nephrocalcinosis. The preparations of pharmaceuticals provide the various necessary components to optimize the effects of vitamin D deficiency and correct B2 (riboflavin). You can add or delete an ingredient, according to the condition being treated.
Dr. Coimbra prescribes riboflavin (vitamin B2) because one of its main functions is to facilitate the process of vitamin D activation in the “lazy” proteins, or “polymorphic” proteins, in the bodies of people predisposed to developing autoimmune diseases.
“The addition of riboflavin (vitamin B2) in the high dose treatment of vitamin D, according to our experience, prevents the formation of new kidney stones” – Dr. Coimbra.
According to a survey conducted by a large team of scientists, led by Peter A. Calabresi of Johns Hopkins University School of Medicine in Baltimore; low levels of vitamin D lead to an increased risk of developing multiple sclerosis. Additionally, low levels of micronutrients also correlate to increased activity of the disease, so doctors and researchers have long been asking whether and how vitamin D supplements could improve the lives of people with MS. A study published in Neurology in January 2016 suggests that yes, high doses of vitamin D may do good to those who suffer from MS and may reduce the hyperactivity of the immune system which is typical of the disease.
The researchers administered vitamin D3 supplements, in varying doses, to 40 people with MS. Some received 800 IU (international units) of vitamin, whilst others received much higher doses, equivalent to 10400 IU. Through blood tests, the researchers then measured – at the beginning, and then again three and six months later – the levels of vitamin D and the activity of T lymphocytes in the patients. T lymphocytes are important mediators of immune response in people who suffer with sclerosis multiple.
The scientists discovered that, for both doses of micronutrients, the side effects were minimal and in any case comparable in the two groups, but those taking higher doses of vitamin D had benefits that the other patients did not. In particular, high levels of vitamin D were associated with a decrease of T cells that produce interleukin-17, an important mediator of inflammation in multiple sclerosis (specifically, when levels exceeded 18 ng / ml, every increase of 5 ng / ml was associated with a 1% decrease in the percentage of T cells in the blood). No change in T lymphocytes occurred for those who had received low-dose supplements.
The researchers pointed out that it is still unclear what the appropriate levels of vitamin D for patients with MS are. Other studies will be needed to confirm these observations and process the clinical recommendations, but it is believed that it is necessary to administer about 50 ng / ml to reduce disease activity. What is certain is that it is an interesting way forward, not least because, as noted by Calabresi, vitamin D could become an economic weapon, safe and convenient for people with MS.
Vitamin D, therefore, could be an alternative treatment for MS?
To better understand the treatment of vitamin D and understand how this can help those suffering from this disease, I asked a few questions to Christian, 36, diagnosed at the beginning of July 2015. He has taken a 10 months course of vitamin D3 supplements and is being treated in Brazil.
Hello Christian, first of all thank you for offering to answer some questions related to this interesting topic. Tell us how your adventure with our common “friend” is and what prompted you to seek alternative treatments.”
My adventure, as for many other people with MS, began after a serious family bereavement occurred three and a half years ago which was followed a few months later with small phenomena that, although light, denoted with the benefit of hindsight, was the beginning of disease activity. Although I was in a supportive environment, it was constantly growing.
In particular, I refer to tingling in my legs, then a strong labyrinthitis and finally the symptom that led me to go to my doctor and that led to the diagnosis: a slight numbness in my left leg that made me drag my foot. Parallel to these symptoms others also increased which had existed for years, such as chronic fatigue and heat intolerance that I only connected to the pathology after my diagnosis.
Following the first checks, I underwent hospitalisation with all the classic tests including a complete MRI that led to the diagnosis of RRMS; the resonance denoted the fact that there were many small lesions in the brain and neck. So it was immediately proposed that I take one of the two traditional therapies: Copaxone which I still take and have no evident side effects.
Whilst searching the internet and trying to wade through jungle of scientific or pseudo scientific treatments I found the material of a Brazilian doctor who has worked for the past 10 years on a treatment with high doses of vitamin D. His patients reported many positive experiences. I spent the entire month of July researching these studies as much as possible and then I decided to start taking Vitamin D, given that many studies indicated positive effects on MS and the course of the disease.
I must say that on the way back from the hospital after Cortisone any light symptoms I have (fatigue and heat intolerance in part) are completely gone, but once I started taking Vitamin D in early August, in about 45 days my chronic fatigue was almost completely gone. So much so that only then I realized fully how much it was present before. I want to try to make people understand that this is not a normal tiredness but something much more impactful, I can say for example that it happened to me on vacation and I would rest exceedingly all day without moving from my home. I would avoid fun activities that at my age it would have been logical to do, and i would sleep for up to 10 hours a day. At the end of the holiday I was more tired than before: I felt a weariness that kept me from going out and living my life. It is not a lack of willpower or laziness, but it is a real need of the body in people with MS.
So I said to myself: if only the self administered dose of Vitamin D has had these effects so quickly, what effects would the real protocol have? And so in October I packed my suitcases and went to Brazil and since then my fatigue has not returned.
What are the doses considered a “normal” amount of vitamin D according to Dr. Coimbra and what is chosen as the optimal dosage for patients with MS?
It must be clarified that Vitamin D is not so much a vitamin, but a prohormone, which once transformed by our body has an effect and a significant impact on metabolic functions, and so the recommended dose goes from 600 to 800 IU per day. This dose, however, is noticeably wrong, since it is not able to correct for any deficiency. This idea now comes from many authoritative sources like Dr. Holick (the greatest living expert on vitamin D) and Dr. Soram Khalsa, who wrote a book about it.
Coimbra however suggests that the physiological dose of vitamin D useful in metabolic functions, and that he himself claims to give his daughter, is 10,000 IU (provided there are no special endocrinological problems such as primary hyperparathyroidism, etc). This dose, according to Coimbra, is equivalent to the levels of vitamin D produced by the body with about 20 minutes of direct sun exposure, without sunscreen, in a young white person who has been out in the summer sun during peak hours. The dosage for MS patients is highly personalized and also varies from 20,000 IU to 250,000 IU, depending on the case. The goal is to get the PTH (parathyroid hormone or parathyroid hormone) minimum of the reference range. The reason for this is that the PTH is the natural antagonist of vitamin D and Coimbra can be sure in this way that the hormones in circulation are the maximum which can administered without toxic doses.
Explain better what constitutes Coimbra’s protocol for you and why you think it might work.
From the proposals Coimbra has substantially explained, it can be summarised that he thinks all autoimmune patients have a defect not yet clear in the cycle of production / processing / activation of vitamin D which results in resistance of the beneficial effects of that substance. To understand this concept, we must clarify that vitamin D is produced in the skin by exposure to the sun, but this is just a pro-hormone which it is biologically inactive, it accumulates in the blood and body fat and must then be further transformed in the liver and kidneys to become the real hormone and carry out these functions. Autoimmune patients have a sort of bottleneck that prevents proper activation and acts against them as a deregulated immune system attacks parts of your body, not recognizing it as such. To remedy this situation and overcome that resistance, Coimbra prescribes mega doses of vitamin D (in the form of pre-hormone), with the constant support of laboratory tests, and the individual resistance of the autoimmune patient is increased. According to him, once you find the correct dose of doing this and maintain it, the disease goes into remission in most cases. Also according to Coimbra, this can be done in about 95% of cases. This protocol is only to be followed under strict medical supervision because this substance can give heavily negative side effects, if not handled properly.
Does remission mean healing?
Absolutely not, remission means ending the autoimmune attack on the body and slowing the generation of new lesions and the progression of the disease. This concept is significantly different for two reasons: 1) if you stop taking vitamin D there is a very high probability that in a short time the disease will worsen again; 2) the harm caused already does not disappear. Every person, every body has the innate ability to repair body damage, but this is limited and imperfect, so any MS patient is aware that it is not always possible to recover from part or all of the symptoms of a relapse (at least until the next time). The Coimbra protocol however ensures stabilisation of the disease progression and the reduction in the appearance of new lesions on MRI.
Are the medical checks and examinations planned?
Absolutely yes: the protocol MUST be undertaken under medical supervision, which means annual visits to a qualified doctor and periodic inspections and tests that relate to the renal function, metabolism and the presence of calcium, etc etc …
The Coimbra protocol is only specific for MS or acts on other immune system disorders also?
According to Coimbra, despite the larger sample of patients having MS and therefore the best results relate precisely this condition, the protocol can be applied successfully to all who have autoimmune diseases.
Have high doses of vitamin D brought you to a change in your lifestyle? And if so, what did you have to change in your habits?
Yes, in the sense that high doses of vitamin D bring potential side effects: the most important relate to the abnormal absorption of calcium from food. All those who follow the Coimbra Protocol should have a specific diet. This results in a total loss of high-calcium foods, primarily dairy products and includes plenty of hydration of at least 2.5 litres a day to dilute the calcium absorbed and not put pressure on the kidneys. Another side effect of high doses of vitamin D is the increased bone turnover which may lead to a more pronounced loss of bone mass. In this regard Coimbra puts in the protocol as a real prescription almost daily anaerobic activity (at least 40 min fast walking 5 days per week). Such activities would in his opinion be sufficient to prevent the loss of bone mass.
Is the treatment expensive?
Not at all: the basic substance is vitamin D, and I spend about 15 euros for this month, in total it costs around 55 € if we include all the other components to optimize the effects of Omega-3 and I’m talking about multivitamin complex that can be prepared in pharmacies on medical prescription.
Have you had any side effects during your first 10 months of treatment? If so, which ones?
Absolutely not. I recently had specific tests to evaluate renal efficiency and the result was that my kidneys are as healthy now as they were a year ago.
Did you have any benefits in these months? If so, which ones?
As I said before, the signs of the disease disappeared spontaneously before treatment in the past three years, but the fatigue didn’t, I have always had it and it was always growing and is now completely gone.
Do you know if the treatment has positive results in progressive forms?
Dr. Coimbra claims it does, even if it takes longer to get results, and often you have to deal with additional emotional disorders due to consolidated disability. I must say that when researching the Brazilian MS Facebook group (with more than 17,000 members) I found hundreds and hundreds of wonderful testimonies on RR, but only a few dozen on progressive forms.
Are there scientific publications presenting the results of Coimbra treatment?
Studies on the correlation between MS and vitamin D existed since 1986, although only in the last 10 years are they multiplying. A study by ELLEN MOWRY, analysing 2362 resonances of 469 subjects came to the conclusion that for every increase of 10 ng / ml of vitamin D in the blood it decreases the risk of re-injury and a led to only a 32% risk of a new active lesion. A study by JODIE BURTON 2010, which evaluated a small group of patients and the safety and effect of massive doses of vitamin D (40,000 IU per day to climb up to 0 with an average of 14,000 IU) for a long period concluded that these doses caused no side effects and have led to a reduction in the relapse rate compared to the control group.
On Coimbra protocol instead there are NO studies. Coimbra has published only two pilot studies on psoriasis and vitiligo with high-dose treatment. In an interview, Coimbra clarified that he will not do for this disease one double-blind study because it would condemn half of the patients (placebo group) not to be treated. The publication of a retrospective study with the folders of over 3000 patients treated by him was sent for the approval of an ethics committee, but was repeatedly denied.
However today the situation is this: there are no definitive studies on vitamin D, nor of this treatment, so I understand the doctor who does not recommend a protocol that has not been validated; but ill with a potentially terrible disease I can not wait another 30 years for someone to shed light on the actual impact of vitamin D. I have personally given credit to the hundreds of testimonies, especially of the Brazilian people, cared for for years and without apparent symptoms, like me at this time. We do not earn anything by talking about it positively but we just want to share the joy of feeling good.
There are also some thirty doctors around the world informed from Coimbra to prescribe high doses of Vitamin D and most of them are in Brazil. I had to go to Brazil because 10 months ago there was only one doctor in Italy who prescribed the Coimbra Protocol, but today the number of doctors in a few months became 5 and before the end of the year it will become 7.
All this is thanks to the activity of an Italian Facebook group which now has more than 13,000 subscribers (PER UN’ALTRA TERAPIA – VITAMINA D PER SM E MALATTIE AUTOIMMUNI), where you can tap into all the information and find comparisons on the progress of treatments. Its founder Anna has been a patient of Dr. Coimbra since 2012. I’ll never stop thanking also Leonardo, a former patient who went to Brazil to shoot a great video and very exhaustive interview which is full of information.
I mean, I understand that my experience to date is provisional and not exhaustive, given the recent diagnosis, the lightness of the symptoms and the relatively short period of treatment, so I intend to change my mind about it (the prerogative of intelligent people), but for now I consider this decision the most important of my life!
Burton, J. M., 2010. A phase I / II dose-escalation trial of vitamin D3 and calcium in multiple sclerosis. Neurology. 2010 Jun 8; 74 (23): 1852-9. doi: 10.1212 / WNL.0b013e3181e1cec2. Epub 2010 Apr 28.