What next

[jimmylegs]

i will just say here briefly that this kind of thing pisses me off.

fake google scholar results falsely listing cg coimbra as an author on one small high dose d3 study lasting just 6 months:

https://scholar.google.ca/scholar?hl=en ... vitamin+d3

A pilot study assessing the effect of prolonged administration of high daily doses of vitamin D on the clinical course of vitiligo and psoriasis
…, NF Novo, Y Juliano, AC Lopes, CG Coimbra - Dermato- …, 2013 - Taylor & Francis

actual citation
Finamor, D.C., Sinigaglia-Coimbra, R., Neves, L.C., Gutierrez, M., Silva, J.J., Torres, L.D., Surano, F., Neto, D.J., Novo, N.F., Juliano, Y. and Lopes, A.C., 2013. A pilot study assessing the effect of prolonged administration of high daily doses of vitamin D on the clinical course of vitiligo and psoriasis. Dermato-endocrinology, 5(1), pp.222-234.

if you dig into CG's academic track record it's not impressive. messing with google scholar's study indexing is ridiculous.

[Jaded]

Thanks Vesta I shall take a look at that.

Thanks JL- well I haven't been taking copper. Saw something saying it wasn't helpful - possibly for TN, I don't know - so stopped taking it.

I also take iron but rarely. Maybe a break from zinc might be good.

I think I eat more zinc-based foods than iron. But have read about copper-zinc balancing. Maybe I should press for some tests.

Occasionally when I feel completely exhausted I do have some red meat. But it has to be organic and I make it with a vitamin c-based meal to ensure best absorption. Your tips JL! Thank you.

Oh, I have some powdered mag - find that hard to take. I get nauseas easily which isn't helpful! Might hunt for some smaller pills.

[jimmylegs]

no problem yep it's all about balance.

when taking zinc, the copper isn't included in any therapeutic sense. it should be there merely there as a defense against zinc-induced copper depletion.

it may well be time for an update on a few blood tests if at all possible. in some cases, dietary intake just doesn't quite get you where you want to be in terms of approximating blood work, or achieving optimal serum levels.

sounds great re iron rich foods and vit C i just made a lightly curried lentil soup with plenty of spinach in it, and coincidentally had some broccoli stems to get rid of (and broccoli is better than oranges for vit C) so whizzed them up in the food processor and added them to the soup as well. finished it off with yogurt and lemon juice. overall, very tasty!

re the powdered mag. is it one you mix up with water and take as a drink? other possible non-pill solutions include the good ole epsom salts bath

[Jaded]

Ah yes I am going to town on those epsom salt baths.

Re blood tests - I shall see how my GP is feeling next visit.

Tonight's dinner - mackerel salad with avocado, watercress, radishes, flat leaf parsley tonight. And some wholemeal bread. Need those carbs! Actually had time to cook. When I get home late it's the last thing I feel like. I guess this might contribute to the problem.

And must remember that I can hide broccoli and things like that in soup!

[jimmylegs]

sounds num! just made me go have some dinner myself lol

[shadowfax]

For me HSCT makes the most sense especially if you are at the RRMS stage. Go for it...

[Jaded]

Have you had this shadowfax??

[NHE]

I have to take D as I don't go out in the sun (melanoma). So perhaps a smaller dose, less often? Also I have trigeminal neuralgia so I take antivirals hoping these will keep it calm. I did change something - I stopped taking St John's Wort and also GABA recently as I was worried about side effects of SJW and the GABA didn't seem to do much for the spasticity (well, maybe....).

Have you ever tried a sublingual GABA? Sometimes I take one of these to help me sleep more soundly and I don't get that thick headed feeling the next day like I can sometimes get with melatonin.

https://www.vitacost.com/superior-sourc ... al-tablets

[Jaded]

Thanks NHE - I did try GABA for a while but stopped it recently as I wasn't sure it ways helping.

It wasn't sublingual though. I'll take a look - thank you.

[robslatt4567]

Swank is a good diet...makes sense. Conventional wisdom concerning diet and exercise is pretty clear. i'm very great full i can still bench a few paper clips.

[Jaded]

So after nearly two weeks of no D3, and 200mg mag (sometimes 300mg) I am no better.

I didn't up the mag as I wanted to see what the D3 absence did.

Walking is awful and to add to it I hurt my toe last year - still waiting for treatment to sort that. It's all quite depressing!

[lyndacarol]

So after nearly two weeks of no D3, and 200mg mag (sometimes 300mg) I am no better.

I didn't up the mag as I wanted to see what the D3 absence did.

The 25-hydroxy D test is measuring calcidiol. The half-life of calcidiol (a.k.a. 25-hydroxyvitamin D) is 2-3 weeks (according to Dr. Carol Wagner and Dr. Robert P Heaney, well known vitamin D experts).

So, I would not expect your blood level to change in "nearly two weeks of no D3" – the level in your blood would not yet have responded with a lower level.

I am confused… What was your initial 25-hydroxy D test result number? Why do you want it lower? Have you been retested? (You mentioned an April 2016 test with a result of 109 -is that unit of measurement nmol/L or ng/mL? – is this the latest test?)

Have you read the sub forum here, Coimbra High-Dose Vitamin D Protocol (http://www.thisisms.com/forum/coimbra-h ... tocol-f57/)? He believes that MS patients are resistant to vitamin D and require high doses. Some of his patients, with severe resistance, have required serum levels between 300 and 4000 ng/mL! This is not my recommendation for you. I suggest that you see your GP and discuss the situation.

[jimmylegs]

sorry to hear, jaded. i wish testing was more readily accessible for you. if you have established a consistent 200-300mg of magnesium daily plus diet PLUS epsom salts baths, and you still have tight muscles, then the questions really become 1. are your levels actually responding to the input 2. if they are not, is it time to consider more to match weight, activity level and d3 intake and 3. if they are responding with your current regimen and you are still suffering, then what the heck else is going on.
found this list which i believe would be specifically applicable in your particular case "Annual nutritional laboratory testing should include albumin, 25-hydroxy vitamin D, fasting glucose, fasting plasma zinc, serum copper, ceruloplasmin, serum selenium, alpha and gamma tocopherol, plasma ascorbate, and serum folate." any chance at any of those?

[jimmylegs]

here's one spasticity case where low calcium and d3 were at issue, but your d3 level close to a year back was 109 / 2.496 = 44 ng/ml to this patient's 11.3 ng/ml:

"Laboratory tests revealed: serum total calcium (Ca) 5.9 mg/dl (normal range 8.2–10.6 mg/dl); ionized calcium (iCa) 3 mg/dl (normal range 4.7–5.3 mg/dl); parathormone (PTH) 34 pg/ml (normal range 15–68.3 pg/ml); 25-dihydroxyvitamin D, 11.3 ng/ml (normal > 30 ng/ml); inorganic phosphate (P) 4.7 mg/dl (normal range 2.5–4.5 mg/dl). Oral 3,000 mg calcium and 0.5 µg calcitriol daily and 50,000 IU cholecalciferol weekly was commenced, with a likely diagnosis of hypocalcaemic muscular spasms due to hypoparathyroidism. Over the following 2 weeks her Ca increased to 8.5 mg/dl and her complaints resolved, with a significant decrease in spasticity."

maybe it's just time for a complete washout and whatever tests you can sweet talk the doc into :S

[jimmylegs]

have you had a look at your calcium intake jaded? maybe it could be a ratio thing.. perhaps high calcium in relation to lower mag.

Severe Hypercalcemia Following Vitamin D Supplementation in a Patient With Multiple Sclerosis
A Note of Caution
Jacqueline F. Marcus, MD; Sarah M. Shalev, MD; Charles A. Harris, MD, PhD; et al Douglas S. Goodin, MD; S. Andrew Josephson, MD
Abstract
Objective To describe a patient with multiple sclerosis (MS) who developed severe hypercalcemia, attributed to the additive effect of 5500 IU of cholecalciferol and 2020 mg of calcium daily.
Patient A 58-year-old woman with MS and osteoporosis presenting with acute-onset tremors and confusion.
Results The patient's corrected serum calcium level was 15.2 mg/dL (reference range, 8.7-10.1 mg/dL; to convert to millimoles per liter, multiply by 0.25), and her 25-hydroxyvitamin D level was 103 ng/mL (to convert to nanomoles per liter, multiply by 2.496).... from the full text: Spasticity was present in all extremities.

woot an abstract with the conversion factors built in?? nice one. in this case the d3 level is WELL above yours, but she was also dealing with an acute downturn which put her in the hospital, and they happened to note the spasticity on top of all the rest.