- Muscular Dystrophies – low vitamin D might be associated with all 9 types – Aug 2018
- Muscular Dystrophy is an Autoimmune disorder
Table of contents
- Facebook Muscular Dystrophy treated by high dose Coimbra Protocol – Aug 2019
- Fracture in Duchenne Muscular Dystrophy: Natural History and Vitamin D Deficiency – 2016
- Increased Rates of Vitamin D Insufficiency in Boys With Duchenne Muscular Dystrophy Despite Higher Vitamin D3 Supplementation – 2019
" 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
Thank you dr. Lucia for all dedication, attention and strength that is giving me! ❤️
So that's it... thank you all for the strength and as soon as I have more news, I'll
J Child Neurol. 2016 Aug;31(9):1181-7. doi: 10.1177/0883073816650034. Epub 2016 May 24.
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.
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.
DMD - Much lower response to ~1600 IU Vitamin D supplementation
DMD, Duchenne muscular dystrophy;
OI, osteogenesis imperfecta;
SLE, systemic lupus erythematosus
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
Download the PDF from VitaminDWiki
DMD insufficient but not deficient
DMD had far less response to Vitamin D