B12 Deficiency, anyone?

[peggy-sue]

I have a friend in England who got B12 injections - in one area only though - she moved and her new gp refused to allow them.

I'm in Scotland, I've not been tested for b12 deficiency, (I've been refused tons of tests) -

I take the sublingual stuff because I can buy it in health food shops - Dr. Myhill's site recommends it, as does Hummingbird's.
It's not going to cause any harm (I checked thouroughly) and I thought it might do some good.

It did, miraculously!

I'm self- treating in the absence of any medical help.

I ought to go back to the gp, now we've got the Scottish Guidelines in place - which recognise the Canadian Criteria and get a proper diagnosis.

I just can't face him though, after all the disbelief and double-speak I've had to cope with.

He has been studying nurse chalder's nasty little videos on "How to flannel these difficult patients".

[joy]

I have a friend in England who got B12 injections - in one area only though - she moved and her new gp refused to allow them.

I'm in Scotland, I've not been tested for b12 deficiency, (I've been refused tons of tests) -

I take the sublingual stuff because I can buy it in health food shops - Dr. Myhill's site recommends it, as does Hummingbird's.
It's not going to cause any harm (I checked thouroughly) and I thought it might do some good.

It did, miraculously!

I'm self- treating in the absence of any medical help.

I ought to go back to the gp, now we've got the Scottish Guidelines in place - which recognise the Canadian Criteria and get a proper diagnosis.

I just can't face him though, after all the disbelief and double-speak I've had to cope with.

He has been studying nurse chalder's nasty little videos on "How to flannel these difficult patients".

I got my B12 tested in Scotland by my GP but that was only after a private test/s showed a severe deficiency.  I have been taking Solgar Liquid B12 for over a year.

All my GP could offer was the NHS prescribed treatment - not the same as we need.

I am now going to ask to be retested.  On my to do list


Ps my GP is supportive and even asked for a the published copy of the ICC.   However, he is still limited in what he can do.

[peggy-sue]

The problem in Scotland (until the new Guidelines came in) was that a gp could simply choose to go by the NICE recommendations - although they don't apply in Scotland, or choose to do a bit of research and give some help, or choose to simply dismiss you as a hysterical malingerer (with a load of condescending double-talk.)

The whole practice I attend goes with the latter choice. I even got flannelled by the practice manager.
I haven't changed practices because I don't hold out any hope of finding anything better anywhere else.

[joy]

The problem in Scotland (until the new Guidelines came in) was that a gp could simply choose to go by the NICE recommendations - although they don't apply in Scotland, or choose to do a bit of research and give some help, or choose to simply dismiss you as a hysterical malingerer (with a load of condescending double-talk.)

The whole practice I attend goes with the latter choice. I even got flannelled by the practice manager.
I haven't changed practices because I don't hold out any hope of finding anything better anywhere else.

I was the same to for Decades but luckily my GP now - just by pure chance is not like that - maybe the advantage of a rural GP.

[FibroBabes]

My b12 levels were 120 a few years back.  I now have b12 shots each three weeks to help with energy.
FB

[MEkoan]

I just found out I have a B12 deficiency (also low iron) and I must admit that I'm feeling very hopeful that sublingual B12 will take care of a number of my neurological symptoms which would be thrilling! 

Anyone have any experience with treating a B12 deficiency and seeing an improvement?  A great big improvement!  I fully expect a great big improvement!

Anyone?

 

Ok, I think it's helping!  It's been three months now and I am seeing an improvement!  I am surprised because after about 6 weeks I kinda gave up expecting one but, since b12 is cheap (thank heaven) I kept taking it.  Had it been CoQ10, or something else expensive, I probably wouldn't have.  That's a sobering thought.

Lately I have noticed that I am doing things I had not done for a long time:  I find myself standing still!   That is a huge development in my world.  I go outside with my wee dog and I can stand still.  It was funny the first time I noticed because I said, out loud, "I'm standing still!"     I can stand to wash a few dishes!  It is much, much easier to take out the garbage.  So, all things related to standing are improved!

I also have more stamina!  I can walk further and more often.  I can take the dog for a walk on Monday AND again on Tuesday!  These are gentle walks and we rest afterwards but they are walks and during them I can stand still!

The only downside is that my thinker is really struggling to keep up.  My cognition seemed to improve for a bit there until my body began to improve and now my body appears to be using up all the fuel leaving my poor brain short circuiting and in a bad way.  However, I am so amazed to be able to move around in an upright fashion that I can't stop myself. 

I still get a sore throat and mildly swollen glands when I walk.  I still seem to generate a crazy amount of lactic acid that builds up in muscles that stay very stiff and sore but I can totally deal with that.  I still have to break up activity way more than normal people but I have activity to break up!!!

This is not an easy time in my life nor is it a time without stress.  It is actually quite a stressful and difficult time so that's not part of this equation.  I suppose it could be a coincidence but, looking at things rationally, it was almost impossible that I would not feel better given that the deficiency was pretty severe and a b12 deficiency causes neurological symptoms. 

Still, I'm surprised    I'm trying not to put a limit on how much I can improve.   

[gracenote]

So happy for you, JustME.

[Karin]

Whoohoo!!! This is awesome, JustME!

[MEkoan]

Thank you! 

Yes, it's very good. 

I urge everyone who can to get tested.

I'm hoping thinking will come online soon!
 

[peggy-sue]

Activity and brain function can trade off against each other......

This is brilliant news, JustME! I'm really, really happy for you.... YIPEE! 

[MEkoan]

Activity and brain function can trade off against each other......

They totally have.  Brain function is positively scary at the moment.

Also, one can overdo so much more easily and end up temporarily very PEMie.  In some way (not worth the potential death and dementia) the b12 deficiency served me.  It taught me how to really pace rather than push and crash.  While I still cannot push far, my old tendency to push as far as I can (ie to crash) is back. 

And, thinking... well, thinking is shot.

But, very pleased to have a new reality to understand.

 

[peggy-sue]

Why not try going back to your previous level of (non  ) activity - and see if it gets your brain going again?

My finding with B12 was that my brain did get going a bit

- and suddenly my life was filled with wonder at such simple things as being able to enjoy a tv programme that lasted an hour - as long as it was reasonably simple and didn't have too much action or too much loud noise.

I could read a teen fantasy novel - as long as it had big print and double spacing.

The joy of not being permanently bored out of my tiny "mind" is indescribable.

Four years on - it's STILL a joy.

It has made resting (I call it "positive inaction" - I know I'm saving up for something good) so much easier.

[MEkoan]

Why not try going back to your previous level of (non  ) activity - and see if it gets your brain going again?

I would but, in that way life has of filling a void, there are demands which must be met and they are not fun demands.  I'm just so grateful to be able to meet them as much as I am able. 

I really think, given the effects of b12 deficiency are so difficult to tease apart from ME symptoms, that everyone really must explore the possibility. 

[marlene]

In Belgium most ME-patients get B12 shots regularly. (weekly)

B12 is necessary for liver (metabolism, detox), thyroid, brain functioning, nerve functioning, ...

Blood values show only circuling B12 and will almost never display a deficiency. That's why you will always benefit from B12.

[MEkoan]

toast

burned toast

be careful

seriously

oy