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Muscular Dystrophy probably treated by high-dose Vitamin D plus muscle rehab

Muscular Dystrophies – low vitamin D might be associated with all 9 types – Aug 2018

Table of contents


Muscular Dystrophy treated by high-dose Coimbra Protocol (Facebook Aug 2019)

Facebooktranslated
" hi good people!
I almost don't enter facebook anymore, but as I started to report on the treatment with vitamin D (Coimbra Protocol), for muscular dystrophy, I couldn't help but report the results of the
I've been doing this treatment for EXACTLY 7 months, and as reported before, some enzymes in my body (CPK) were high, causing my muscles to become inflamed, consequently losing strength (this is the process of the disease)
But yesterday I got the results of the exams I did end of July, and guess
Below are the words of my doctor (Dr. Lucia Schaedler):
"your cpk and dhl that are muscle enzymes, are practically normal, indicating that thank god the inflammatory activity of your disease is stopped"

Imagine, lose strength for 17 years and receive such a news, that the disease is stabilized
Only God knows how happy I am with this, and I wanted to share with you this news, that were people who gave me so many words of support and love since I decided to report about this disease I

PS. With The Disease Stabilized, it does not mean that I will have the muscle strength I had before, and yes that I will not continue to lose, now is to do the next step: Physiotherapy to keep the muscles I have, and continue with the treatment But as for God, nothing is impossible, I will not stop believing that one day I can make my moves again


Fracture in Duchenne Muscular Dystrophy: Natural History and Vitamin D Deficiency – 2016

J Child Neurol. 2016 Aug;31(9):1181-7. doi: 10.1177/0883073816650034
Perera N1, Sampaio H2, Woodhead H3, Farrar M4.
1 Discipline of Paediatrics, School of Women's and Children's Health, UNSW Medicine, University of New South Wales, Sydney, Australia.
2 Department of Neurology, Sydney Children's Hospital, Randwick, Australia.
3 Discipline of Paediatrics, School of Women's and Children's Health, UNSW Medicine, University of New South Wales, Sydney, Australia Department of Endocrinology, Sydney Children's Hospital, Randwick, Australia.
4 Discipline of Paediatrics, School of Women's and Children's Health, UNSW Medicine, University of New South Wales, Sydney, Australia Department of Neurology, Sydney Children's Hospital, Randwick, Australia m.farrar at unsw.edu.au.

The present study examined the natural history of fracture and vitamin D levels in Duchenne muscular dystrophy patients, who are vulnerable to osteoporosis and fractures. Retrospective analysis of a cohort of 48 Duchenne muscular dystrophy patients revealed that 43% of patients experienced ≥1 fracture. Fracture probabilities at ages 6, 9, 12, and 15 years were 4%, 9%, 31%, and 60% respectively, accelerating around the time of ambulation loss (mean age 11.8 ± 2.7 years). Chronic corticosteroid therapy was utilized in 69% of patients and was associated with all vertebral fractures. A history of vitamin D deficiency occurred in 84%, and 35% were currently deficient. Despite chronic vitamin D supplementation, 38% remained deficient. These results demonstrate that osteoporosis and fracture remain major concerns in Duchenne muscular dystrophy. Bone health should be optimized well before loss of ambulation, however current levels of vitamin D supplementation may be inadequate given high levels of deficiency.
 Download the PDF from VitaminDWiki


People with DMD need more Vitamin D - meta-analysis Oct 2023

A systematic literature review and meta-analysis of the effectiveness of vitamin D supplementation for patients with Duchenne muscular dystrophy
Neuromuscular Disorders https://doi.org/10.1016/j.nmd.2023.10.008

Highlights

  • Vitamin D insufficiency or deficiency is prevalent in Duchenne muscular dystrophy
  • We looked at the effectiveness of vitamin D supplementation across multiple studies
  • Current doses prevent severe deficiency but are not as effective as intended
  • No significant link between supplement dose and serum vitamin D levels was found
  • About 20% of people with Duchenne taking vitamin D supplements are still deficient

We conducted a systematic literature review and meta-analysis on the effectiveness of vitamin D supplementation in maintaining or restoring vitamin D levels in Duchenne muscular dystrophy. Due to a lack of randomised controlled trials, cross-sectional and retrospective and prospective cohort studies were taken as the best available evidence. Inclusion criteria included reporting mean serum vitamin D levels in a supplement-taking group. After screening 102 records; 13 were included in a narrative synthesis and eight of these in a meta-analysis.
We show that current dosing regimens are preventing severe deficiency but are not effective at maintaining sufficient vitamin D levels within the Duchenne population.
Despite high levels of daily vitamin D supplementation (>1000 International Units), at least 20% of people with Duchenne remain vitamin D deficient.
No significant association between dose and serum vitamin D levels was found (r2 = 0.3, p = 0.237). A meta-analysis of mean serum vitamin D levels across eight studies also revealed substantial variability in response to vitamin D supplementation and high heterogeneity (I2 = 99.59 %). These data could impact on an individual's risk and severity of osteoporosis and vertebral fractures.
 Download the PDF from VitaminDWiki


Need 3X more vitamin D if DMD - 2019

Increased Rates of Vitamin D Insufficiency in Boys With Duchenne Muscular Dystrophy Despite Higher Vitamin D3 Supplementation – 2019
Glob Pediatr Health. 2019 Mar 15;6:2333794X19835661. doi: 10.1177/2333794X19835661
Bian Q1, McAdam L2, Grynpas M3, Mitchell J1, Harrington J4.
 Download the PDF from VitaminDWiki

Vitamin D supplementation is important for many chronic pediatric conditions to help maintain bone health; however, there is little evidence about how disease-related factors affect vitamin D status. The objective was to compare 25-hydroxyvitamin D (25(OH)D) concentrations in 3 pediatric cohorts (Duchenne muscular dystrophy [DMD], systemic lupus erythematosus SLE, and osteogenesis imperfecta [OI]). In a retrospective study of 367 subjects, children with DMD had increased prevalence of vitamin D insufficiency (25% vs 14% [SLE] and 10% [OI], P = .002), despite higher vitamin D3 supplementation doses. Boys with DMD also had higher weight, fat mass, and lower lean mass percentage Z scores. DMD was associated with having higher rates of vitamin D insufficiency than other comparable pediatric chronic disease cohorts, the effect of which may be modulated by clinical factors such as increased adiposity. While corroboration of these results is needed given baseline differences between the patient groups, greater vitamin D supplementation doses may be required to achieve optimal serum 25(OH)D concentrations in boys with DMD.
Image

DMD - 3X lower response to ~1600 IU Vitamin D supplementation
Image
DMD, Duchenne muscular dystrophy;
OI, osteogenesis imperfecta;
SLE, systemic lupus erythematosus


This study was cited 24 times as of Oct 2023

Google Scholar


Since MD is associated with GI problems, they might just need Gut-Friendly D

Half of MD people have Gastrointestional problems

Overview Gut and vitamin D contains gut-friendly information

Gut-friendly, Sublingual, injection, topical, UV, sunshine

Getting Vitamin D into your body has the following chart
Image

Getting Vitamin D into your body also has the following
If poorly functioning gut
Bio-D-Mulsion Forte – especially made for those with poorly functioning guts, or perhaps lacking gallbladder
Sublingual – goes directly into the bloodstream
Fat-soluble Vitamins go thru the slow lymph system
   you can make your own sublingual by dissolving Vitamin D in water or use nano form
Oil: 1 drop typically contains 400 IU, 1,000 IU, or 4,000 IU, typically not taste good
Topical – goes directly into the bloodstream. Put oil on your skin, Use Aloe vera cream with Vitamin D, or make your own
Vaginal – goes directly into the bloodstream. Prescription-only?
Bio-Tech might be usefulit is also water-soluble
Vitamin D sprayed inside cheeks (buccal spray) - several studies
    and, those people with malabsorption problems had a larger response to spray
Inject Vitamin D quarterly into muscle, into vein, or perhaps into body cavity if quickly needed
Nanoparticles could be used to increase vitamin D getting to the gut – Oct 2015
Poor guts need different forms of vitamin D has the following
Guesses of Vitamin D response if poor gut

Bio FormSpeedDuration
10Injection ($$$)
or Calcidiol or Calcitriol
D - Slow
C -Fast
Long
10 Sun/UVBSlowLong
10Topical
(skin patch/cream, vagina)
Slow
Fast nano
Normal
9Nanoemulsion -mucosal
perhaps activates VDR
FastNormal
9?Inhaled (future)FastNormal
8Bio-D-Mulsion ForteNormalNormal
6Water soluble (Bio-Tech)NormalNormal
4Sublingual/spray
(some goes into gut)
FastNormal
3Coconut oil basedSlowNormal
2Food (salmon etc.)SlowNormal
2Olive oil based (majority)SlowNormal

10= best bioavailable, 0 = worst, guesses have a range of +-2
Speed: Fast ~2-6 hours, Slow ~10-30 hours
Duration: Long ~3-6 months, Normal = ~2 months


Perhaps poor gut ==> low vitamin D ==> MD

The GI problems often precede MD symptoms

  • "Digestive symptoms can be the first sign of muscular dystrophy. For example, in myotonic muscular dystrophy, digestive symptoms can precede musculoskeletal features. "
    • Gastrointestinal manifestations in myotonic muscular dystrophy - 2006 doi: 10.3748/wjg.v12.i12.1821

The risk inheriting MD might be reduced if use gut-friendly Vitamin D

Limb-girdle muscular dystrophy - perhaps caused by a poor gene - a treatment in 2023

The Atlantic Magazine July 2023
The enzyme is known as HMG-CoA reductase halts cholesterol production
Dysfunction in this enzyme causes muscle weakness from both limb-girdle muscular dystrophy and statins.

What Are the Different Types of Muscular Dystrophy? May 2021
Image


Muscular Dystrophy and genes

MD and genes

Reduced response to Vitamin D is often due to poor vitamin D genes, such as:
CYP27A1, CYP2R1 or VDBP
Possibly: Poor Genes ==> Low Vitamin D ==> muscular dystrophy
Unaware of if genes can be changed
The solution might be just give 2X more vitamin D - similar to obese

Sometimes a reduced response to Vitamin D is due to a drug being taken to treat a disease
Wonder if a child with poor MD genes would be less likely to get MD if they had lots of Vitamin D

MD describes a set of 30+ similar problems due to poor inherited genes - WikiPedia

  • "The word "dystrophy" comes from the Greek dys, meaning "no, un-" and troph- meaning "nourish""

People with DMD have poor response to Vitamin D - 2017 thesis

 Download the PDF from VitaminDWiki
DMD had far less response to Vitamin D
Image

DMD insufficient but not deficient
Image


Mechanisms in Sarcopenia and Muscular Dystrophy - Aug 2015

Editorial: Pathophysiological Mechanisms of Sarcopenia in Aging and in Muscular Dystrophy: A Translational Approach
 Download the PDF from VitaminDWiki


Suspect that if MD is treated, that muscle growth will be helped by Sarcopenia techniques

VitaminDWiki - Multiple Sclerosis and Vitamin D ~ 50,000 Facebook members in 13 languages – Jan 2017


Life Extension Magazine Overview of Muscular Dystrophy - Dec 2020

Nutrients that help
Coenzyme Q10 (anti-oxidant - sometimes combined with Vitamin D)
Resveratrol (ncreases Vitamin D in cells),
Creatine (builds muscles)
Omega-3 (builds muscles)
Vitamin D
Glutamine
L-Carnitine
Green tea
Vitamin E and Selenium (anti-oxidants)
N-acetylcysteine (antioxidant which decreases muscle damage)


VitaminDwiki – Overview Muscles and Vitamin D contains

To build muscles you need more than just Vitamin D
   also need Exercise, Protein, Magnesium, Omega-3, and activated Vitamin D Receptors
     In fact, Vitamin D monotherapy sometimes DECREASES muscles.

Notes on Vitamin D Receptor:
Vitamin D Receptors get vitamin D in the blood to the muscle cells
Approximately 20% of people have poor vitamin D receptors
As people age, their Vitamin D receptors also become less activated
There are 12+ low-cost activators for the Vitamin D Receptor
122+ VitaminDWiki pages have MUSCLE in the title
Dr. Greger on Vitamin D and Muscles - May 2020
Vitamin D Supplements for Increasing Aging Muscle Strength

  • "We have known for more than 400 years that muscle weakness is a common presenting symptom of vitamin D deficiency"
  • conservative "U.S. Preventive Services Task Force, the official prevention guideline setting body, and the American Geriatric Society to “recommend vitamin D supplementation for persons who are at high risk of falls.”
  • AGS recommends 4,000 IU to capture 92 percent of the population"


138+ VitaminDWiki pages with MUSCLE, etc in the title

This list is automatically updated


95% of MD patients had low Vitamin D - 2019

Vitamin D in Patients With Duchenne Muscular Dystrophy   Free PDF
Question: Low D ==> MD,   MD ==> Low D,   or X ==> Low D and MD


10X increase in DMD in 16 years - 2020

Patient demographics and characteristics from an ambispective, observational study of patients with duchenne muscular dystrophy in Saudi Arabia - Sept 2020
Image
 Download the PDF from VitaminDWiki


Vitamin K2: A Cure for Muscular Dystrophy?- Video July 2022

MD results from too much Calcium in the muscles.
Vitamin K2 proven to reduce calcium in soft tissue


Overview of muscular dystrophies (Glucocorticoids decrease Vitamin D getting to cells) - Sept 2023

Great summary
 Download the PDF from VitaminDWiki
Note: Glucocorticoids are often used to Treat MD.
Glucocorticoids decrease active Vitamin D (not blood level) by changing activation of the CYP24A1 gene

Perplexity AI - March 2024
"Glucocorticoids are widely used in the treatment of Duchenne Muscular Dystrophy (DMD)... They are considered a standard part of care for most patients with DMD, with clinics often prescribing these medications as soon as patients are diagnosed"


New $$$ Duchenne MD drug - fewer side effects than Corticosteroids - Oct 2023

MD Edge - Vamorolone
2-6 mg/kg/d for a period of up to 48 months. Assuming 4 mg and 10 kg child ==> 40 mg/day
10 mg costs $140 (research $), so it might be EXTREMELY EXPENSIVE


FDA approved Duvyzat (it reduced the decline of speed of MD children to climb stairs over 18 months) - March 2024

Duvyzat approved by the US FDA

  • take twice a day for life
  • "The most common side effects of Duvyzat are diarrhea, abdominal pain, a decrease in platelets—which can lead to increased bleeding—nausea/vomiting, an increase in triglycerides (a type of fat in the body) and fever"

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Attached files

ID Name Comment Uploaded Size Downloads
20301 Overview of muscular dystrophies (Beyond the Basics) - UpToDate.pdf admin 28 Oct, 2023 269.44 Kb 74
20300 MD 2016.pdf admin 28 Oct, 2023 227.55 Kb 69
20298 DMD D meta_CompressPdf.pdf admin 28 Oct, 2023 607.49 Kb 133
19834 MD types.webp admin 23 Jul, 2023 35.31 Kb 372
19364 Huge increase in MD.jpg admin 23 Mar, 2023 20.17 Kb 525
19363 duchenne muscular dystrophy in Saudi Arabia.pdf admin 23 Mar, 2023 769.56 Kb 200
19362 Pathophysiological mechanisms of sarcopenia.pdf admin 23 Mar, 2023 115.32 Kb 196
12491 Vit D per IU.jpg admin 16 Aug, 2019 36.36 Kb 1912
12489 DMD vit D thesis.jpg admin 16 Aug, 2019 46.88 Kb 1910
12488 Bian DMD thesis.pdf admin 16 Aug, 2019 1.11 Mb 784
12485 DMD per IU.jpg admin 15 Aug, 2019 96.62 Kb 1972
12484 DMD 60 percent.jpg admin 15 Aug, 2019 19.44 Kb 2056
12483 Muscular Dystrophy 2019.pdf admin 15 Aug, 2019 430.42 Kb 692