- “An estimated 947,000 people in the U.S. have multiple sclerosis (MS) — more than double the long-accepted figure of 400,000 — according to a newly completed study organized and funded by the National Multiple Sclerosis Society (NMSS).”
Poster was presented at international MS conference in France
- $1 million study for working group of 15 to 20 epidemiologists, statisticians and neurologists meeting virtually every week
- “Collectively, these six databases provided information on more than 100 million people — or well over a third of the U.S. population — with the rationale that “nearly all persons with MS, except the uninsured, would be captured in one of these programs.””
- “Among its limitations, the NMSS study excludes children, Native Americans, undocumented residents and prisoners, as well as people who seek treatment at alternative medical clinics rather than the healthcare insurance system.” [undercount]
- The study showed an overall MS prevalence of 402.8 cases per 100,000 inhabitants — up from 58 per 100,000 in 1976 and 85 per 100,000 for the period 1989-94.
- “Interestingly, the NMSS study doesn’t look at incidence — the number of new cases that appear in any given year — but rather prevalence. Nor does it break down prevalence according to type of MS”
The Prevalence of Multiple Sclerosis in the United States: A Population-Based Healthcare Database Approach
ECTRIMS Online Library. Wallin M. Oct 26, 2017
Background: Within the US, the prevalence of multiple sclerosis (MS) is poorly understood and inadequately characterized, but such information is important to support planning of health services and advocacy efforts. We aimed to develop a case definition to identify people with MS using health claims databases, and to apply this definition across the US to generate robust population-based MS prevalence estimates.
Methods: An MS case definition was developed and validated in three independent administrative databases. We applied this definition to identify MS cases between 2008 and 2010 using the following health care databases:
- Department of Veterans Affairs (VA),
- Kaiser Permanente Southern California (KPSC),
- Medicare and Medicaid.
We estimated the three-year cumulative prevalence, and standardized to the 2010 US population.
Results: Among individuals with at least one health claim for demyelinating disease, the case definition had a sensitivity of 86%, specificity: 76-82%, and positive predictive value: 96-98% when compared to physician-adjudicated diagnoses.
The unadjusted cumulative prevalence of MS for 2008-2010 for the private insurance databases was
- 208 per 100,000 (95% CI: 205-211) for Optum and
- 208 per 100,000 (95% CI: 207-210) for Truven.
The cumulative prevalence for the
- national VA health care system was 177 per 100,000 (95% CI: 174-181), and for
- KPSC was 110 per 100,000 (95% CI: 106-114).
The female: male ratio for MS prevalence was about 3:1 across databases and a US geographic prevalence gradient was found. A final integrated national MS cumulative prevalence estimate will be generated and stratified by age, sex and geographic region.
Conclusion: The US national cumulative MS prevalence rates for 2008-10 are the highest reported to date and provide a contemporary understanding of the disease burden. Our rigorous algorithm-based approach to estimating prevalence is novel, efficient and has the potential to be used for other chronic conditions.
Overview MS and vitamin D contains the following summary
Clinical interventions have shown that Vitamin D can prevent, treat, and even cure Multiple Sclerosis, at a tiny fraction of the cost of the drugs now used to treat it, and without side effects.
- Fact: Low Vitamin D results in higher risk of getting MS
Increase latitude leads to decreased Vitamin D, which leads to increased risk of MS
Dark skinned people are far more likely to get MS (dark skin people typically have low vitamin D)
Elderly (who typically have low vitamin D) are more likely to get MS
Is there increased risk in people who already have diseases associated with low vitamin D - TB, for example ? ? ?
Women typically have 3X increased MS risk then men (note: women typically have 20% lower levels of vitamin D than men)
Exception: women in very sunny climates and dark-skinned women have the same MS risk as men
Obese are 60% more likely to get MS
Smokers - smokers have lower level of vitamin D and have higher incidence of MS (also, smokers are difficult to cure of MS in Brazil)
MS recurrence is much higher in spring - the lowest time of the year for vitamin D
increase in clouds/rainfall (which reduces available Vitamin D) is associated with increased risk of MS (Scotland, Western Washington)
MS incidence has increased 70% in a decade while the incidence of vitamin D deficiency doubled
Less MS in those with outdoor occupations PDF file, not a web page
- Fact: MS uses up Vitamin D
- Fact: Lower vitamin D (due to MS using up Vitamin D while fighting the disease) results in many other health problems (such as broken bones), so depleted vitamin D levels must be restored.
- Fact: Vitamin D looks so promising for preventing and treating MS that there were 25 INTERVENTION clinical trials as of Feb 2014
- Fact: Vitamin D reduced the MS relapse rate far better than Fingolimod which is now used for that purpose.
- Note: Fingolimod costs $25,000/year while vitamin D, which works better and has no site effects is 1000 times less expensive.
- Fact: 98% of the genes affected by Interferon are also affected by Vitamin D
- Note: 1 week of Interferon = $4,700, 1 week of vitamin D 10,000X lower cost
- Fact: MS Doctors in Brazil recommending 40-100 ng/mL of Vitamin D
- Fact: Many MS forums are recommending vitamin D to treat MS, with some taking 5,000 to 10,000 IU daily
Observation: Risk of going from pre-MS to MS reduced 68 percent with 7100 IU vitamin D – RCT Dec 2012
- This is an observation instead of a fact - it has not yet been confirmed.
- Fact: VERY LARGE doses of vitamin D have CURED 2,000 people of MS in Brazil
- Controversy: UVB fron sunlight or UVB bulb may be BETTER than Vitamin D for reducing the risk of getting MS
- Hypothesis: In addition to Vitamin D there are many other photoproducts produced by UVB that may promote health.
Summary: lack of consensus on how much to prevent, treat, or cure MS.
- How much Vitamin D to prevent many diseases - such as MS
- How much Vitamin D is needed to treat MS? There is currently no agreement
The recommendations range from 40 to 100 ng - which can result of a dose ranging from 3,000 to 20,000 IU/day
- How Vitamin D is needed to Cure MS?: It appears that 20,000-140,000 IU daily may be needed to CURE the disease
You must be under the supervision of a doctor who knows what to watch for in your individual situation.
High doses of Vitamin D cannot be used as a monotherapy.
You will need to adjust the cofactors: Typically increasing Magnesium and Vitamin K2, and reducing Calcium intake.
Your doctor will monitor these and might increase your intake of Vitamins B2, C, as well as Omega-3
Multiple Sclerosis and (lots of) Vitamin D - book by patient on Coimbra protocol - Feb 2016 contains protocol description
Vitamin D Protocol used by Dr. Coimbra for Multiple Sclerosis etc.
Snips as of April 2016 http://www.vitamindprotocol.com/dr.-coimbra-s-ms-protocol.html
- 1,000 IU's vitamin D per kilogram as a first approximation
(apparently increased/decreased depending of resulting vitamin D blood level)
- Vitamin B2, magnesium glycinate, boron, chromium picolinate, Omega 3 DHA, Zinc, Methylcobalamin form of B12, Choline, etc.
- Lack of B12 may affect 10%–15% of the general population and may be the most prevalent genetic risk factor for several human diseases
- Discontinue eating or drinking dairy products or calcium enriched foods or beverages, also no Ca supplements
- Drink as least 2.5 liters [85 ounces] of fluids, preferably water
- Required Tests: Vitamin D, Parathyroid, Blood calcium, urinary calcium
Multiple Sclerosis and (lots of) Vitamin D - book by patient on Coimbra protocol - Feb 2016 contains Facebook Groups
- Portuguese - oldest on FB :18,788 members Jan 2017
- MS & Vitamin D - English
- English 965 members Jan 2017, 7,000 members as of May 2018
- Italian 6,570 members as of Jan 2017
- German 2,350 members as of Jan 2017 (started Sept 2016)
Her book and protocol in German under development - perhaps Spring 2017
- Vitamin D Protocol North America 1,449 members Jan 2017
From list on Google Drives
- Vitamin D Protocol North America: https://www.facebook.com/groups/vitamindprotocolnorthamerica/
- High-Dose Vitamin D for Autoimmune Diseases: https://www.facebook.com/coimbraprotocol/*fref=nf
- Multiple Sclerosis - Vitamin D: https://www.facebook.com/groups/433972210087009/*fref=ts
- Vitamin D Multiple Sclerosis: https://www.facebook.com/Vitamin-D-Multiple-Sclerosis-156229837877670
- Vitamin D and MS: https://www.facebook.com/groups/vitamindandms 546 members as of Jan 2017
- Vitamin D Deficiency Syndrome (not only regarding autoimmune diseases, but inspired by Coimbra protocol): https://www.facebook.com/groups/120738731293512/*ref=ts&fref=ts
- ESCLEROSE MULTIPLA - O TRATAMENTO: https://www.facebook.com/groups/EscleroseMultiplaOTratamento
- ESCLEROSE MULTIPLA TEM SOLUCAO - BEMDITASVITAMINAS: https://www.facebook.com/groups/190960337581683
- Artrite Reumatoide - Tratamento com VITAMINA D: https://www.facebook.com/groups/1428810010667211
- Vitamina D - Natureza, Nutricao e Saude: https://www.facebook.com/groups/622262507873764
- Espondilite Anquilosante & D3 Vitamina: https://www.facebook.com/groups/945025008881088
- Vitamina D: https://www.facebook.com/vitaminadbrasil
- Nos dizemos ADEUS as doencas autoimunes com Vitamina D: https://www.facebook.com/groups/vitaminad
- Vitamina D e Saude: https://www.facebook.com/groups/644875738973761
- ESCLEROSE MULTIPLA + VITAMINA D = A GRANDE DESCOBERTA=VIDA ! REABILITACAO: https://www.facebook.com/groups/829851020377068
- O tratamento com vitamina D do Dr. Cicero Coimbra - Portugal: https://www.facebook.com/groups/1425762970980967
- A Brigada da Vitamina D e a Esclerose Multipla: https://www.facebook.com/vitaminadem/info
- Vitamin D und MS - Coimbraprotokoll: 2568 members Jan 2017
- Esclerosis Multiple Latinoamerica - Altas Dosis de Vitamina D 1213 members Jan 2017
- Bendita Vitamina D: https://www.facebook.com/groups/benditavitaminad
- Esclerosis multiple - COLOMBIA - Vitamina D: https://www.facebook.com/groups/esclerosismultiplecolombiavitminad/*fref=ts
- Altas dosis de vitamina D - Esclerosis Multiple: https://www.facebook.com/Altas-dosis-de-vitamina-D-Esclerosis-M%C3%BAltiple-135790546829648
- Vitamine D — Pour une autre therapie: https://www.facebook.com/groups/155432754846598
- Il protocollo Coimbra in Italia - Alte dosi di vitamina D per autoimmunita: https://www.facebook.com/groups/coimbra.italia
- Per un'altra terapia - Vitamina D per la SM e per le malattie autoimmuni: https://www.facebook.com/groups/protocolloCoimbra
- Vitamina D per SM e altre"malattie autoimmuni": https://www.facebook.com/groups/348361975295212/*ref=browser
- Vitiligine & Vitamina D: https://www.facebook.com/groups/1585908351671283
- Alopecia e protocollo Coimbra: https://www.facebook.com/groups/1676891909213146/*hc_location=ufi
- Vitamina D - Emodieta- protocollo Coimbra...Guarire dalle autoimmunita: https://www.facebook.com/groups/1127525930614216/*fref=nf
- Protocollo Coimbra e Sclerosi Multipla Italia☀️ Alte dosi di vitamina D https://www.facebook.com/groups/835088713314021 455 members added March 2017
- Pentru o alta terapie: Vitamina D pentru Scleroza Multipla: https://www.facebook.com/groups/568396633257764
- Σκλήρυνση κατά πλάκας και βιταμίνη D - Η λύση: https://www.facebook.com/groups/248517068633042
Western Balkan countries, Croatia and Slovenia 7,000 members at end of March 2017
- MS i ostale autoimune bolesti - tretman vitaminom D3: https://www.facebook.com/groups/Dvitamin/*fref=ts
- Vitamin D3 - Cudezni hormon !: https://www.facebook.com/groups/213918382289774
- MS Makedonija-LEKUVANJE SO VISOKI DOZI NA D3 VITAMIN: https://www.facebook.com/groups/581798718659139/*hc_location=ufi (240 members Jan 2017)
- Issetine skleroze (nauja grupe): https://www.facebook.com/groups/483705531797062
- Hoy dose vitamin D3 for MS og andre autoimmune tilstander : https://www.facebook.com/groups/1021897311186644
- CoimbraProtokollen - Informasjon Norge https://www.facebook.com/coimbraprotokollen/ noticed May 2017
- https://www.facebook.com/groups/Dvitamin/*ref=bookmarks (6200 members Jan 2017)
- https://www.facebook.com/groups/msd3tretman/*ref=bookmarks (350 members Jan 2017)
Russian added Feb 2017