Matty,

I wasn't sure I read correctly. I guess you were saying that the doc said Methylcobalamin is ready to use. Of course, it is, and the larger amount of immediately usable B12 is very important to a percentage of people.

B12 can be absorbed by people with severe malabsorption when swallowed, as long as a large enough dose is taken at one time. Even the least efficient form, cyanocobalamin, which is what the research was done on initially, and most of the research since then. Most doctors do not know this, even though it was discovered decades ago and has appeared in some of the better mainstream medical literature for years.

Sadly, I think most of our docs (and medical editors) are as badly behind as those in Britain. The horror stories have accumulated for the many years now I have been working on this issue. Glad to hear you are working on it over there!

I agree. I would certainly go for the hydroxo before the cyano.

Yes, we have also had dear friends here who were misdiagnosed with MS instead of treated for what was later found to be B12 deficiency. Inexcusable.

More of those differences in treatment necessary are due to the degree of malabsorption and the degree of deficiency. Most people who have severe malabsorption can do fine on one 1000 mcg oral dose per week if their stores were built up good to begin with and they store ok. Another option for those people is to take a whole lot to make sure B12 is full to overflowing and then stop for a while (in most people weeks or months are without risk). The problem with that is it is easy to forget about, become complacent, or if storage is not good a person can get into trouble more quickly.

Better to have "too much" than too little. And the best form possible---after all, why not.

Yes, there's hope. It won't be the first time good information took at least decades to get out.

rose

thanks again for your comments and advice. It's really helping me to understand my wifes' condition.

Rose, you've said again that sublingual is okay for people with severe malabsorption but I can't get it straight in my head. My wife finds the methyl lozenge (3000mcg) only helps for a short time. For instance she'll take 3 or 4 in a day when she's having a bad week (or month as it's been of late!) but doesn't feel the benefit like she does from the injection, which she's getting once a fortnight. I'm not putting down the lozenges or suggesting they can't work for some people, but surely likewise there are people that don't benefit as much and need the injection. Haven't looked at your site yet but I will very soon - if I'm allowed more than 30 minutes on the computer!

Consider This, thanks again for your comments. Yes, the story on your site is about our family doctor. My wife was at the meeting described. I wanted to ask you how frequent your B12 injections are - I think you commented earlier in the thread you've had them twice a day at times - do you self inject?

I have also read about B12 patches on the internet but they're not mentioned here - what experiences have you all had. We tried to get some but they're not distributed to the UK. It would work out expensive because my wife would have to wear two patches at a time to get the same dose of her injections now.

We're just praying that something concrete happens with regards to diagnosis. Wouldn't it be perfect if school kids got a routine blood test at key stages through their life so if your relatively low it's on your record permanently and can be acted on when symptoms occur - or better still they'll take supplements and never develop the symptoms. How can we ensure something happens? I think web sites are great but if you Google B12 deficiency you get like a million items and get sick of looking at page 3!! Why don't sites like yours crop up in the first few items?

Any ideas?? Thanks for listening.

Hi Matty,

Wow, I got goosebumps reading that Dr. Chandry is your doctor!

That story really impresses me! the one I copied in part to my site.

I have a lot of B12 shots, one a day when there's been a lot of peripheral neuropathy and other pain, or tinnitus, or blurry vision, etc., and sometimes two.

I've never gotten the same relief/improvement from the lozenges, either... but I've always "imagined" that was because I never took enough of them to match a shot a day...

I think to match a shot a day someone would have to have 6 of the 5mg lozenges a day... That's pretty many.

As an aside, do you have access to the hydroxy cobalamin? I tried to get it here in Santa Fe (admittedly at Wal*Mart, which is a little like Marks and Sparks) and could not. (That was a few years ago.)

But I read that Australia has it readily available at the chemist, you don't even need a prescription.

Is it also like that at Boots? (Is there still a Boots the Chemist?)

(((((((((Matty)))))))))))

By the way, I haven't tried the patch and I generally think it probably is not as effective if someone needs quite a lot of B12 in a sort of immediate way.

But... I have no experience with the patch.

*****

That is a GREAT idea about screening school kids!

I've never heard anyone mention that before, and it didn't occur to me. (though before I lost my condo I was planning to get B12 made up in the Methylcobalamin form and distribute it free to the local prison for inmates with ridges on their fingernails. My theory is that a lot of crime is related to nerve damage and being irritable (a bit of understatement there) and that if people with low B12 who tend to have problems with the law were given B12, it would save a lot in housing of people who run astray of the law under the possible influence of low b12.) I sure hope I get the value of my equity in my condo... I have so much that I want to do.

Again, GREAT idea, Matty!!!!!!!!!!!!!!!!!!!!!!!!!

********

I get about half the hits to my web site from search engines, but more the MSN and Yahoo ones.

My site comes up pretty quickly on Google if you also ask about Fingernails...

I've had my site for a long time, I think that helps it come up on the first few pages.



I'm glad you wrote.
It was a really nice break to read your post and respond...
Now I have to go back to working on correcting the errors in my appeal brief to get my condo back.

Hi ConsiderThis, I'm surprised. Just wondering where you may have got that information. Things are somewhat over restricted here I find (not that it's a bad thing) and I was absolutely under the impression that one needed a prescription. I had B12 injections some years ago and it was script only. I've just tried to find out info. now online but it's difficult sifting through all the TGA stuff here. So, just wondering who told you that it was available without a prescription? I wasn't aware that was possible.

Hi Lara,

It was on a thread in the Peripheral Neuropathy forum... about getting Methylcobalamin, which I guess is very expensive in Australia...

A poster wrote that the hydroxy was at the chemist and available without prescription. Look in the Peripheral Neuropathy forum...

I should get the link for you...

http://neurotalk.psychcentral.com/sh...ad.php?t=25744
It's post number 6:

Edited to add! Thanks.

I'll check out their thread. I found some stuff on another forum elsewhere so just checked that out... that was just from a google search.

Update to last post...
Well, I just found somewhere where they mention buying it OTC in Australia. I'm somewhat surprised, but there you go... seems there are two companies selling it at present. One is out of stock so the other one has been listed PBS. hmnn

Just an aside... I was at the health food store yesterday speaking with a naturapath and asked her about the methyB12 (I actually take a cyanocobalamine sublingual 1mg) and she looked at me as if I had rocks in my head. LOL I was so surprised. Certainly not available in their chain, although did find it listed at some sports site.

so, yes. Expensive and almost impossible to get.

Well, I just answered my own question. Sorry about that. Just was very surprised it was available without prescription.

Oh my goodness.... I so often write that people should take the Methyl form... I just did not realize how tricky it was to get in some other countries... though of course Vitacost ships to most of them.

I'm going to have to refine what I write...

I do know that when I wanted to get it made up to give away, back when I had my rental sales income and before I knew they'd foreclosed and sold my condo with no notice to me of the sale, I saw that Methyl was less easy to find to be made up. There actually aren't that many places in the whole of the world that make these things...

Hi, Matty.

Even swallowed cyanocobalamin in 1000 -2000 mcg daily oral doses is as good or better over the long run (lab results show) for most people with severe malabsorption than the usual shots regimen (which is generally once per month.

Hydroxocobalamin is retained better and has some other qualities that cyanocobalamin does not have.

If one does not respond the same with methylcobalamin orally as with shots there's at least a few possibilities: 1) that person extremely unusual 2) the lesser but daily amount does not produce such an obvious "jump," but over the long haul is as good or better than shots 3) coincidence sometimes confuses the issue, as the improvement process often is a bumpy road with overall improvement in the long run.

rose

Hi Matty,

I'm really hoping you come back and post some more from experience.

There's so much to learn, and shared knowledge from experience ... that's one excellent way to find out things that can help.

((((((((Matty)))))))))

Also, I forgot to mention how stoked I was that your wife was actually at the meeting described in the news story.

I haven't been able to spend time the last few weeks due to my wife taking a turn for the worse.

The last few weeks she has became steadily more dependent on help getting around. There is alot of stress going on for her. Our house is being renovated and is a DIY job due to not much spare cash in our household - so everything is a bit upside down. As she is stuck in it all day the mess gets her down, especially as getting about the house is difficult.

I think the extra effort needed to get about and stress of looking at a half done house all day is causing or certainly adding to the setback in her recovery.

Her latest B12 level was 2000 - which is very high - but her mobility has been terrible and getting worse. The last two weeks her left hand has become weak, she cannot bend her finers properly so is dropping things.

Our doctor has tested her reflexes and muscle strength and they are fine - previously before B12 treatment you could of stabbed a Bowie into her thigh and she wouldn't have flinched!! but even so she cannot walk without aid!?

I'm finding it all so confusing.....is this a case of mind over matter?

This morning she called me at 6.30 am -she was in the bathroom and her voice sounded very weak. When I got to her she was pallid - as white as a sheet - with a cold sweat all over her body. She could not open her eyes and was speaking in a kind of dazed voice. It was very shocking to see. I got her back to bed and she slept solid for 2 hours - I haven't let her out of the bedroom all day even though she was much brighter in herself.

What I'm finding so difficult to get my head round now is why would her condition slump to such a low as now - this has been getting up to this point today for six months. In September 2006 she was walking unaided again after years of difficulty and now she's confined to the house again. The doctor says keep the injections to once every two weeks and take a lozenge every 3 days ( she's now got Methyl 5000mcg ). He says she shouldn't need more than that with all the treatment she's had and because her level's so high.

What do you all think? Could this set back be completely down to stress?