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Director's Letter
Carole Baggerly
Director, GrassrootsHealth
Barbara van Amerongen and I met at a Vitamin D Workshop in Brugge, Belgium in 2012. She was very interested in what GrassrootsHealth was doing with a non-clinical trial research approach and was especially interested in how that methodology could apply to multiple sclerosis. Since that time, we have met her in her home town of Amsterdam twice and have continued to work to take action with her, with others!
I hope you enjoy this news, another perspective on how a life with MS can be bettered with vitamin D. Certainly one thing Barbara does understand is the importance of research, and getting information properly documented and published. Only then can it be disseminated throughout the world. Only then can we hope to eradicate MS.
We are working on this front. We have relationships with key vitamin D scientists. We hope to use Dr. Cicero Coimbra's de-identified patient data. We understand his protocol and measurements. We can analyze this protocol and results and publish a very compelling paper on vitamin D and MS - for possible treatment. Our next step with this would be the endorsement of an interested organization or individual to help fund and promote the efforts necessary. Let us know anyone, any areas or groups that you think would be interested in helping. We're ready to help solve this problem NOW!
Onwards!
Director, GrassrootsHealth A Public Health Promotion & Research Organization
Moving Research into Practice NOW!
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A 10-Year Case Study of One - Using Vitamin D3 to Improve MS
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
Barbara M. van Amerongen and Fran�ois Feron
VU University Medical Center, Amsterdam, The Netherlands
October 2012
About Barbara M. van Amerongen, DDS, PhD.  Dr. Barbara M. van Amerongen received her dental degree from the University of Amsterdam in 1974 and earned her PhD in 1985. At the University of Amsterdam, she was working at the Department of Preventive Dentistry; in addition she had her own part-time dental practice. In 1990 she was diagnosed with multiple sclerosis (MS), the symptoms having started around 1975. In 1997 she closed her dental practice, due to MS-related fatigue. She joined the Department of Molecular Cell Biology and Immunology, VU University Medical Center, Amsterdam, part of the MS Center, to study MS and Vitamin D. This resulted in two papers (van Amerongen et al., 2004 and Kragt et al., 2009). These papers led her to test her hypothesis (that vitamin D aids MS) on herself.
About Dr. van Amerongen's Case Study
In January 2001 Dr. van Amerongen started with vitamin D3 800 IU/day, resulting in serum levels between 33-40 ng/ml (84-102 nmol/L). September 2004 she increased to 4000 IU/day, which seemed to keep the serum level around 40 ng/ml (100 nmol/L). In December 2005 she increased again to 6000 IU/day, and serum levels rose to above 55 ng/ml (135 nmol/L). Although there were rises and falls in the serum level throughout the 10 year period, her vitamin D level was always within a "safe" physiological range of 30-80 ng/ml (75-200 nmol/L). She found it took her about 8 months at a new dosage level to reach a steady state 25(OH)D level. Calcium was also taken daily - initially 240 mg/day, and only from March to July 2009 increased to 1332 mg/day.
She used patient related outcome measures - ambulation (walking distance in km/day) and muscular pain (pain killers yes/no) - to keep track of her progress. In addition bone mineral density (BMD) and serum levels were monitored.
Results
Ambulation was the key patient related outcome measure. The walking distance increased, as vitamin D levels increased, from 1 km/day to 14 km/day.
(Chart note: for vitamin D3, 1 mcg/day = 40 IU/day)
Muscular pain decreased, as vitamin D levels increased. She stopped using a painkiller (Paracetamol). Even after a long walk, she no longer suffered from muscular pain, whether calf muscle pain or nocturnal leg cramps.
Unfortunately, her PTH level did not reach the lower limit of its normal (reference) range and her BMD decreased. She was diagnosed with osteopenia in 2009.
Adverse Effects
 Adverse events including hypercalcaemia, nephrolithiasis or fracture, were not observed. Serum calcium levels remained within the normal range. In January 2009, a scan with a sonographer revealed no renal calculus (kidney stones) after eight years of vitamin D supplementation. Additionally, no hypercalciuria was observed.
Discussion
This paper discusses the blunted parathyroid hormone (PTH) response, vitamin D resistance, and ways to reduce PTH level as found in the literature.
Conclusion
The authors recommend that periodic assessment of vitamin D3, calcium and magnesium intake, bowel problems and the measurement of serum 25(OH)D, PTH, Ca levels, UCa/Cr and bone health become part of the integral management of persons with MS.
While a clinical trial of one will not make headlines, it is a very interesting, detailed case-study of one person with MS who took vitamin D3, in increasing dosages, calcium and magnesium and improved her quality of life. She can walk for exercise and enjoyment and she is no longer in pain.
More information
Van Amerongen publishes a web site ( Vitamin D and MS) where she collects news on Vitamin D and MS, gives an overview of the ongoing clinical trials with Vitamin D in MS, and presents a growing number of researchers, including neurologists, interested in vitamin D and MS. There is also an outreach to Dutch people with MS.
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 Where is Dr. van Amerongen Now?
What is your regimen now - almost 5 years since you stopped taking measurements for this paper?
My regimen is basically the same:
- Vitamin D3 6000 IU/day, and my last vitamin D level, February 2016, measured by GrassrootsHealth was 49 ng/ml (122 nmol/L)
- Omega-3 (EPA/DHA) 700 mg/500 mg/day
- Calcium from food, at least 750 mg/day
- Magnesium 400 mg/day
- Vitamin B complex
- Vitamin K2 100 mcg/day (per 1000 IU VitD3)
- Gluten free diet
- I'm studying and trying probiotics
 Yearly, I monitor the same measurements as mentioned in the paper. I'm still able to walk 12 km a day and seldom use painkillers. Unfortunately, the gluten free diet does not decrease the PTH level. The PTH level is high, considering the vitamin D level, but still within the (normal) reference range.
To me the blunted PTH response or vitamin D resistance is a "key problem" in MS. Dr. Cicero Coimbra addresses it as well by giving his patients a "tailor made" daily dose of vitamin D3 until the PTH level reaches the lower limit of its normal (reference) range.
"PTH production is inhibited by vitamin D and Coimbra's research has shown that vitamin D immune benefit is maximized when circulating PTH has reached the lower limit of its normal (reference) range. Achieving that level of PTH requires a different daily doses of vitamin D for each individual because biological resistance to vitamin D is different for each person." - From GrassrootsHealth News, March 2, 2016.
A lower PTH level would not only benefit MS as shown by Coimbra, but it also may benefit bone health. I surmise a high PTH level causes bone remodeling and bone loss.
In my case a tailor made daily dose of vitamin D3 would probably be 10 times higher than what I take now. I also think Omega 3, cofactors and probiotics may influence the necessary daily dose of vitamin D3.
Do you think vitamin D should be used to treat MS?
Yes, I do believe that vitamin D should be used to treat and to prevent MS. MS is a risk factor for osteopaenia, osteoporosis and fracture ( Dobson et al., 2012) and a more recent meta-analysis has confirmed that MS was significantly associated with fracture risk ( Dong et al., 2015). I would like to know if the Coimbra Protocol not only treats MS, but also decreases the fracture risk in MS.
Are you excited about any recent (or ongoing) studies with vitamin D3 in MS?
 Yes, I'm excited about the recent report that vitamin D deficiency in the first trimester of pregnancy may cause MS ( Munger et al., 2016). This would mean that MS simply may be prevented by preventing Vitamin D deficiency in pregnant women. GrassrootsHealth is already preventing vitamin D deficiency in pregnant women with their project Protect our Children NOW!
Unfortunately, I'm not very excited by the ongoing clinical trials in MS with vitamin D3, as most are underpowered. To enroll enough study participants seems to be a problem. Moreover the dose of vitamin D3 given in clinical trials is always standard, and not tailor made. So it may take another century to provide the required evidence based evidence.
I'm quite thrilled by a vitamin D3 intervention study, in pre-diabetic people, which separated high from low responders by measuring the vitamin D dependent changes in the expression of the vitamin D target genes ( Saksa et al., 2016). The diagram below is from that paper. It represents 12 vitamin D receptor target genes (red) and 12 serum protein and metabolites (blue) and their relation. Notice that PTH plays a central role. Dr. Cicero Coimbra uses the PTH serum level as a biomarker for his vitamin D treatment. A similar vitamin D3 intervention study, in people with MS, may determine which genes are involved in people with MS.
What new research would you like done on vitamin D and MS?
 The only way forward is a large database with people with MS, who take vitamin D3, and follow them over time. This would be achieved if people with MS join GrassroothsHealth to monitor their vitamin D level. "Your participation in this project provides information for your answers to D questions and helps fund the GrassrootsHealth projects." - GrassrootsHealth, D*action  Measure the outcome of Dr. Cicero Coimbra's treatment. We can learn from him. "GrassrootsHealth has the translational research methodology to take all the patient data Dr. Coimbra has amassed over his 16 years of treatment and figure out if it is beneficial. Is there harm in so much vitamin D? Is there harm in reducing calcium for prolonged periods of time? Is there harm in taking patients off their MS drugs?" - from GrassrootsHealth news, March 9, 2016.  The answers to the questions in the GrassrootsHealth D*action participant questionnaire: In the last 6 months have you fallen? Yes/No. If yes, how many times? Broken a bone? Yes/No provide important outcome measures for MS.
In addition I really would like research to tell us how many people with MS have a blunted PTH response, how to treat and prevent it.
 Develop and measure the personal vitamin D index for MS. The vitamin D index is used to measure the transcriptional response and the more lasting epigenetic response as a result of vitamin D3 supplementation ( Carlberg, 2016). Do you think vitamin D could prevent MS? Why? Yes, I do, I simply love your project Protect our Children NOW!Giving 4000 IU/d to pregnant woman may prevent MS, but we, somehow, must measure the outcome. The average age of MS disease onset is 30 years, perhaps the PTH level in combination with the personal vitamin D index for MS can be used as an early predictor of MS? Then we might not have to wait 30 years.
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Editor's Letter
Susan Siljander
Marketing Director, GrassrootsHealth
This newsletter has been especially fun for me as I got to meet a new colleague and friend, Barbara van Amerongen. I have yet to meet her in person, but it is nice to correspond with someone across the world who has such a strong devotion and love for science - and helping others.
I hope you enjoy this news. First, her paper - which of course you can read in its entirety. Then, read her view of MS, vitamin D, and the current MS studies. She has kept abreast of this information for over 25 years! Her perspective is very enlightening.
Please continue to forward to people who have MS - or people who are pregnant. What if you forward to a friend who is pregnant, they take action - and 30 years from now that baby, now an adult, remains healthy and vibrant? Could you have been the cause of that good will?
Have a great week,
Susan Siljander
Marketing Director, GrassrootsHealth
A Public Health Promotion & Research Organization
Moving Research Into Practice NOW!
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Your participation in this project provides information for your answers to D questions and helps fund the GrassrootsHealth projects.
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How do you treat your condition with vitamin D?
We will summarize the results in a future newsletter.
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Vitamin D and multiple sclerosis
Colleen E. Hayes et al.
University of Wisconsin-Madison
October 1997
Multiple sclerosis and vitamin D: an update
Barbara M. van Amerongen et al.
VU University Medical Center, Amsterdam
August 2004
Higher levels of 25-hydroxyvitamin D are associated with a lower incidence of multiple sclerosis only in women
Jolijn Kragt et al.
VU University Medical Center, Amsterdam
August 2013
Bone health and multiple sclerosis
Ruth Dobson et al. Barts and the London School of Medicine and Dentistry October 2012 Read Paper
Multiple Sclerosis Increases Fracture Risk: A Meta-Analysis
Guixian Dong et al. Harrison International Peace Hospital, China December 2014 Read Paper
Vitamin D Status During Pregnancy and Risk of Multiple Sclerosis in Offspring of Women in the Finnish Maternity Cohort
Kassandra L. Munger, ScD, et al.
Harvard School of Public Health
Maternal vitamin D deficiency during early pregnancy was associated with a nearly 2-fold increased risk of MS in the offspring
March 2016
Dissecting high from low responders in a vitamin D3 intervention study
Noora Saksa et al.
University of Eastern Finland
Presented at 17
th Vitamin D Workshop, Chicago, 2014
A study of the changes in the expression of vitamin D target genes at the start and the end of an intervention with vitamin D3 supplementation
Molecular Approaches for Optimizing Vitamin D Supplementation
Carsten Carlberg
University of Eastern Finland
A paper explaining the concept of a personal vitamin D index
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