What I have said is that most people can convert cyanocobalamin to the smaller amount of methylcobalamin to store and use, and that lives have been saved for decades since cyanocobalamin was synthesized.

Not everyone can convert well, and people who do not transport well (usually older people) can do better with larger amounts of usable B12 (methylcobalamin).

Also, methylcobalamin is the form that in very large doses has proven therapeutic in some with MS, ALS, etc.

If one has only cyanocobalamin available, adequate doses of it will almost always refill stores, and usually (but not always) allow at least some improvement. So I have continued to make the point that people should not forego B12 treatment because some have led them to believe that cyanocobalamin is useless. It is not.

Hydroxocobalamin is better than cyanocobalamin, and methylcobalamin does things no other form can do.

Taking notes is great, as I have also recommended for years. However, the notes need to be taken for a long time, as when serious repairs are being made, it is a long and frequently weird process. Noting what happens in the first weeks, and expecting that to continue in a linear fashion is frequently misleading.

In fact, some people have thought that B12 was no longer helping, and so stopped it, only to find months to a couple of years later that their bodies had been continuing to repair on the stores they had build up and the damage was again worsening as stores had been allowed to deplete. This is one example of how dangerous going on the short-term obvious results can be.

I also malabsorb severely. But what I do is not important. What is important is that researchers found over 30 years ago that people who malabsorb severely (have true pernicious anemia---absence of intrinsic factor) can rebuild stores on 1000 mcg B12 orally per day.

If you had read the extensive history I have written (most of it lost in the old braintalk board crash), you would know that I have improved massively, but that I was damaged severely (nearly died) so it has not been a quick or easy ride.

Your neurologist and general practition are wrong if they stated that symptoms cannot get worse after beginning B12 treatment when it is needed. When the nervous system repairs, nerves grow back in ways that are not the same as before, and the central nervous system has to learn how to intrerpret the different signals. Even if you scrape your knee, as the scab forms and time progresses there will be different symptoms--- itching is common, for one. The symptoms one experiences during repairs are not necessarily the same as before, although sometimes they are a temporary exacerbation of previous symptoms, and even those can seem like new symptoms if they were too subtle before to notice.

I write all of this for the benefit of others who will read it.

rose











Karen wrote:

My understanding is that everyone must convert cyanocobalamin to methylcobalamin in order to get any benefit.

It is only the methylcobalamin form that our bodies use.

That is why our bodies make methylcobalamin from the B12 supplements we take, assuming that our bodies can absorb the B12... Because of the difficulty in absorbing it for some people, the sublinguals are a good choice because they bypass the need for gastrointestinal absorption.

What I think my neurologist and general practioner meant, was that the research shows that people who are deficient in B12 and then treated, get better and not worse.

I expect that's relatively true.

But what I find worrying is that the research is done on healthy people to start with, so their B12 stores are much greater than those of people who have been sick for a long time.

The research is great, and that's why I have excerpts from so much of it on my site:
http://www.health-boundaries-bite.co...-Excerpts.html

I think it's important to know what the research has shown.

But, it's also important to know that in every bit of research different people react differently... so the final results are based on the statistical significance of the numbers who had one result or the other.

Because that is true, one person could fall into a different part of a particular study's outcomes than another person.

It is for this reason that I think it is extremely important to keep notes on ones symptoms, the amount of B12 one is taking, and tests.

Though, given that the range for test results in the United States uses a very low low, there is a point at which the test results cease to provide meaningful information -- by that I mean that when my test results went above 900, then I was considered to have too high of a B12 level. In fact, when my level went above 200, I had a hard time getting additional injections.
http://www.health-boundaries-bite.co...B12-Level.html

When I complained that dropping below a level of 900 caused depression for me, I was pooh-poohed.

If I had not kept notes, I think the combined authorities telling me that more B12 could not help, would have made me susceptible to believing them instead of what I knew about myself.

Given this experience of mine, when Matty described what went on with his wife, I was moved to reply. I think Matty is right, that more B12 would have been good, for much longer.












This is what Rose wrote:

B12 is not absorbed in the stomach (gastric). It is absorbed in the ileum, and true pernicious anemia is lack of intrinsic factor. When intrinsic factor is not present to escort the B12 to the ileum, a very large dose must be taken, and in that case a small percentage is absorbed by default.

That is why at least 1000 mcg must be taken for people with severe malabsorption (lack of intrinsic factor or no stomach) to get about 10 mcg. Sublingual B12 was not used during the decades this dose has been used medically by those doctors who are not ignorant of it. 1000 - 2000 mcg is the textbook oral dose for severe malabsorption.

Most people do improve somewhat. Some who are treated early enough get their lives back entirely. When severe damage is done, the body can continue to repair for years. The fact that weird symptoms occur during those repairs does not mean people are getting worse. That is just part of the process for many.

The fact that you could got get continued treatment was due to ignorance, not lack of studies. Even most mediocre doctors would want a higher level than 200. The better lab ranges don't even have an upper limit to the "normal" range for B12. And even most of those are far too high on the lower end.

I'm all for people taking lots of B12. But I think it is extremely important that they realize the results they are seeing are not necessarily dose dependent. It takes time to repair, and the process is not linear.

rose

The thing is that few people lack intrinsic factor.

Some research suggests that lack of intrinsic factor may result from many years of B12 deficiency.

What causes many people to be low on B12 is the use of antacids, which reduce stomach acid. Acid is needed to freed B12 from the protein in food.

I think that basically healthy people can benefit from a lot of things, whereas people who are really sick need more intensive help.

Insufficient stomach acid is much more common than lack of intrinsic factor, but lack of intrinsic factor is not rare.

Insufficient stomach acid either results from or causes (or both) the stomach lining to deteriorate, which makes loss of the ability to secrete intrinsic factor more likely.

All, do remember that stomach atrophy, loss of sufficient acid, etc., often result even though an individual has not done anything (antacids, etc.) to cause it. Often it is autoimmune related.

rose

so is the stomach acid in the ileum????

No one should believe that because something is so healthwise for one person, that it will be exactly the same for them.

That's why it is so important to keep individual notes... so see what works for you, and how.

No. Stomach acid is in the stomach, and if it is there is sufficient quantities it breaks the B12 out of meat-product foods. Then, if intrinsic factor is present it escorts the B12 to the ileum where the B12 is absorbed.

rose

Rose and Consider This,

In response to which works best, cyano or methyl cobolamin - I spoke to our family doctor who has been treating my wife about this. He says to remember the B12 medication is artificial - so it has to go through a greater number of changes before it can be utilised by the cells than naturally absorbed B12 does. Cyano is the most basic form that needs to go through most changes before it's used in the body, then hydroxo, then methyl. He thought methylcobolamin as a lozenge or liquid suspension should be best to take orally as most B12 could be absorbed through the blood vessels under the tongue.

Consider This, if you are getting Cyano injections - perhaps you could ask for hydroxo which my wife gets, perhaps they'd be better utilised in your body than cyano - the trade name of my wifes' injections are Neocytemen (not sure of spelling) it's maybe worth asking your doctor about this??

Rose, in response to many different people needing different courses of treatment. This is so true, I have been involved in a small way with a B12 patient support commity that was set up after our family doctor recieved action against him from our Primary Care Trust ( that's the management side of the National Health Service in Britain ) and heard stories from perhaps twenty people about how B12 affects them. There were two people in the group who suffered as badly as my wife had from a young age, there was a woman who had severe depression who was contemplating suicide before she saw our doctor ( after starting treatment she realised her daughter was self harming due to depression ), some had severe arthiritis (or thought so), one young lady had been told by the Neurologist that there was nothing wrong with her and her partial paralysis and need for crutches was phycological!! ( the same department missed the parietal cells in my wifes' blood seven years ago and told her she had MS without testing B12 levels) - there are many more stories and they all had a similar treatment plan. Started on hydorocobolamin injections for (1000mcg in 1ml) every day for at least one week, then reducing gradually depending on signs ans symptoms. Some were on monthly injections for life with sublingual supplements, some supplements only ( 1000mcg once a week was enough for one lady ). So there's a huge variation in treatments and recovery but there's also a huge variation in severity of symptoms when the treatment started and age at first symptoms.

The good news, our B12 support group told the story to the media last year - a film was made by the BBC and on Britains Channel 5 news - and finally the authorities started to take notice of our doctor. He has recently been in discussion with a professor from the General Medical Council - some patients were interviewed to get our point across and hopefully a treatment plan for the whole country and a change in the way doctors are taught will occur. If this happens surely more of the world will listen too.

From what I have read The States are ahead of Britain in their understanding of B12 deficiency. I fit contact lenses in my job and often have to discuss patients general health. Out of the patients I have come across who get B12 injection ( three so far ) they all got it tested "as an afterthought" after being sent down a long line of doctors who had run routine blood tests - none of which was a stand alone for B12. So I hope that finally we are going to see a change to the way doctors diagnose in general. ( there's always hope! ).

I sure miss being able to fry eggs. It's in eggs, too.

I see what you are saying.

Oh, Matty, thanks!

Did you say you were in England?

I asked about the hydroxo several years ago when I could still go out, and it was "unheard" of... so I stick with the cyano and Milk Thistle to help my liver handle the cyano part of it.

I really appreciate your post and your thoughts on the subject. Thank YOU!

I meant to ask you, is it your doctor that's in this story . . .
http://www.health-boundaries-bite.co...MPRESSIVE.html

I was so excited when I read that story!!!!

I used to just put links to things on my site... but then after a few years I realized that other people change their sites and then my links don't work anymore.... so I put the link and some of the story there now.



What a great thing that you have a support group!

Wanted to tell you, too, that I gave the link of your posts in this thread to a friend who is recently afraid that she has MS... She emailed me back that this is a GREAT thread.

So, the word is getting out.

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

(as an aside, I used to live in Islington)