Popping back in for a quick update:

Keela · Post by **Keela** » 12 May 2013, 21:45

Hello folks,

I'm not on here much, but still thinking the Powerswitch way.....

As I think I described a couple of months ago I now have ME which has rather cramped my style...

Anyway today is ME Awareness Day, so I really hope you don't mind me sharing a link to a blog post I wrote about How ME Affects me.... Just in the spirit of awareness etc. you know.

And I'm doing okay, just having to make changes to what I do and how I do it. Doing more sewing and sedentary things... which is nice to have the time to do... Garden has reverted to a bit of jungle, but all the fruit trees and bushes I planted when well seem to be thriving which is great.

Any way enough chit-chat for now. Please do click through and check out some of my thoughts:

http://sallysewssometing.blogspot.co.uk ... ct-me.html

Thanks.

biffvernon · Post by **biffvernon** » 12 May 2013, 22:26

I have two friends who have had ME really badly. They are both completely recovered and live full and active lives.

Keela · Post by **Keela** » 13 May 2013, 07:35

Thank you! I live in hope, and I'm luckier than most in that I am not housebound by this..... I have an amazing new toy that lets me get out and about: www.travelscoot.com

RenewableCandy · Post by **RenewableCandy** » 13 May 2013, 12:59

I know someone who had ME and (I think) recovered enough to go back to work. She's now on maternity leave

I didn't know the stuff about the mitochondria.

Keela · Post by **Keela** » 13 May 2013, 14:28

I think, in truth, that ME cases differ fairly widely. Diagnosis seems to be mostly by exclusion (ie patient not ill with anything they can test for) and the preferred term in the UK is still Chronic Fatigue Syndrome - which does seem to gather up quite a wide variety of sufferers.

Consequently predictions about potential recovery are not straight forward, because not all diagnosing doctors follow the same criteria. It's a problem with testing treatments too.

Anyway my tactic is to try to Do No More Damage.... and hope that the ME just forgets to come back one morning.

Keela · Post by **Keela** » 13 May 2013, 14:29

As for a post-crash world.... Well I'm toast!

gug · Post by **gug** » 13 May 2013, 15:07

According to Dr Michael Holick (find him on youtube) - one of the worlds foremost experts on vitamin D3 - a vast number of diagnosis of ME/CFS are actually misdiagnosed chronic vitamin D deficiency.

Get tested on www.vitamindtest.org.uk

Turns out pretty much most people are deficient generally, some worse than others.

Not saying your doc got it wrong, but if they did, then great news... its fixable.

I got tested and was a staggeringly bad 15 ng/ml (39.6 nmols).
Great lecture here: http://www.youtube.com/watch?v=Cq1t9WqOD-0

Cheers

Gug.

Keela · Post by **Keela** » 13 May 2013, 15:36

Thanks Gug - I'll watch that.

I'm on Vit D supplementation at the moment as a precaution, but my Vit D levels generally are okay (last time they were tested anyway).

Aiming for more sun too.... difficult last winter of course, but I'm trying to make up for lost time now...

My illness was very sudden onset - so unlikely to be a Vit D problem as that would not decrease suddenly between one day and next IMO.

I'll ask for another check up next time I'm in anyway.

gug · Post by **gug** » 14 May 2013, 12:04

Hi,

Cant hurt to check, although if you view that video and read up at vitamindcouncil.org or http://grassrootshealth.net/ or any of Dr Holicks websites you'll see that what is (and has been) considered "normal" - is actually nowhere near optimal ( the uk RDA is only 400 IU/day - which is enough to stop you getting rickets - but nowhere near enough to maintain (or ever get to) healthy levels.

You should be aiming for between 40-60 (or IMO 60-80) ng/ml (multiply ng by 2.5 to get nmols) total vitamin D in bloodstream.

My level was (a lousy) 15ng/ml (39 nmols).
My partner was 67 nmols (26.8 ng/ml) - which is deemed "adequate" by the NHS (vitamindtest.org.uk) - but in fact, that level is only really good to stop rickets - very far from optimal health.

i'll bet your vitamin D supplement is a measly 400-800 IU.
You can safely take 5000 IU/Day without even checking your levels (although i'd advise anyone to do so).
Many recommend taking 8000 IU/day just to maintain healthy levels

(as ever folks, do your own research on this before you start self medicating - i recommend watching Dr Holick, his books, and the other non-holick websites above).

so unlikely to be a Vit D problem as that would not decrease suddenly between one day and next IMO.

I'm sure you're right, although all illnesses start somewhere ! Vitamin D deficiency symptoms come in all shapes and sizes - its not like they start gradually and then get worse.

emordnilap · Post by **emordnilap** » 14 May 2013, 14:11

It's said that that supplements don't 'work' as they tend to be concentrated versions of single versions of vitamins. For instance, carotenoids appear in over 500 different forms - imagine trying to make a supplement that gives you the same balance that a good diet would.

The China Study explains it well.

gug · Post by **gug** » 15 May 2013, 13:09

emordnilap wrote:It's said that that supplements don't 'work' as they tend to be concentrated versions of single versions of vitamins. For instance, carotenoids appear in over 500 different forms - imagine trying to make a supplement that gives you the same balance that a good diet would.

The China Study explains it well.

Whilst I cant argue with that generally, There dont seem to be many different types of D3 - Sunlight hits your skin producing D, which is converted to 25-hydroxyvitamin D3 by your organs and cells (various).
Anyway, the only natural way is via sunlight (through diet is an extremely poor method of getting a healthy amount of D3) - and given our sunlight levels, thats tricky. Other than that, you then have to put up with potential UVA and UVB damage. Apart from which. I feel like i havent seen that orange orb up there for a long time !

Strictly speaking, once converted, D3 is more of a hormone than a vitamin.

emordnilap · Post by **emordnilap** » 15 May 2013, 14:04

gug wrote:There dont seem to be many different types of D3 - Sunlight hits your skin producing D, which is converted to 25-hydroxyvitamin D3 by your organs and cells (various).
Anyway, the only natural way is via sunlight (through diet is an extremely poor method of getting a healthy amount of D3) - and given our sunlight levels, thats tricky. Other than that, you then have to put up with potential UVA and UVB damage. Apart from which. I feel like i havent seen that orange orb up there for a long time !

Yes. I think some mushrooms are (good?) sources and not much else.

Having said that, alfalfa sprouts have been claimed to be a vit d source - we always have sprouts on the go and I mean always - we eat sprouted thingies four, five or more times a week, it's just there, you grab a handful whenever: radish, mung bean, chick pea, mustard and beetroot sprouts are amongst our usual haul along with the ubiquitous alfalfa.

Thankfully, you don't need that much exposure to sun, or we would be in trouble.

Snail · Post by **Snail** » 16 May 2013, 21:48

Just been reading that vitamin D takes about 48 hours to be absorbed into your blood stream, and you can easily wash it off with soap and water. Never knew that.

gug · Post by **gug** » 16 May 2013, 23:37

Snail wrote:Just been reading that vitamin D takes about 48 hours to be absorbed into your blood stream, and you can easily wash it off with soap and water. Never knew that.

Sorry.... both of those are untrue.
Half the time, and vitamin D is generated by uvb action on cholesterol beneath the surface.

If you could wash it off, you've got much bigger problems than D deficiency!

woodburner · Post by **woodburner** » 17 May 2013, 01:04

Living is dangerous..........
http://articles.mercola.com/sites/artic ... evels.aspx

These disinfection byproducts (DBPs), such as trihalomethanes (THMs) and haloacetic acids (HAAs) are EXTREMELY toxic. Some experts believe them to be over 10,000 times more toxic than chlorine. They’re so dangerous, in fact, that the U.S. Environmental Protection Agency (EPA) sets the goal limit for some of them at zero. Unfortunately, it’s impossible to enforce, which means you always have some in your municipal water supply.

and this from just looking up washing off vitamin D.