Re: was: Vitamin D Council on autism: confused - or just plain stupid. Help

[Guest guest]

I am stumped. Avoid Vitamin D and the sun? To my mind that is tantamount to asking someone to live in an oxygen-free environment. Vitamin D is soooooo important. What about asking at the Vitamin D council website. The doctor seems to be really on top of the research. If necessary, make a small donation. I'd really try and sort this out as Vitamin D is critical.Sorry I cannot help you further at the moment. To: Autism-Biomedical-Europe Sent: Friday, 4 May 2012, 13:52 Subject: was: Vitamin D Council on autism: confused - or just plain stupid. Help

This is really timely thanks.

I've been trying to get to the bottom of Tom and my Vitamin D levels and autism and sarcoid.

Tom is very low in D3, even the NHS noticed - so he's supplemented with D3. Low D is implicated in seizures, of which he's had two in total. So in theory that should help. However, it's also suggested that it's not low D per se that's the problem but the fact that he can't utilise it.

I have sarcoidosis. The NHS refuses to test my blood for vitamin D levels as they say it would be meaningless. They say there is no blood test that would show if I needed vitamin D, just one that would show how much was in my bloodstream. They say sarcoid produces it own high levels of vitamin D and in fact I should avoid vitamin D and the sun. They're reluctantly testing me for calcium.

As both Tom and I have issues with auto immune (mine are very mild, I should add, but I'd like to keep them that way) but his RX is supplement with D and mine is avoid it at all costs I am seriously confused. And of course there is a growing school of thought that both his and my auto immune is actually a response to bacteria, not just simple auto immune.

My consultant says the only course of action which may help me but he's loathe to prescribe is - azithromycin. Of course Tom has now been prescribed that same antibiotic.

Further more I now gather that neuro-sarcoid is implicated in autism. Which might be a red herring but news to me.

My consultant is keen to stress the genetic link to sarcoid (although I'm not Irish, afro caribbean or scandinavian) but not when queried about whether that link may have been passed from me to Tom.

I know about Marshall protocol (for me) but seem to have no way of testing whether that's an approach I should follow. Could anyone shed any light either on what vitamin D tests we should both be having and or on what the whole "supplement" "avoid" debacle tells us.

many thanks