Rose-
I was included in the b-12 study at the same time I began b-12 therapy. Dr. Evatt is my treating physician for the b-12 deficiency while monitoring my movement disorder treatment for Essential Tremor. Though most of her study is dealing with Parkinson's and b-12 deficiency, she's included other movement disorders in the study...

Hi Rose,

No they are not the same.



I've never been able to take enought Methylcobalamin for it to work equally well for me.

I think if I just had less stress, or were better able to handle stress, that they would probably be fine.

I remember Fred talking about how much Methyl he took. I can't remember how he spelled it.

He was so kind and sent me some. I was soooo happy not to have to do shots, just major delighted.

But after a month or so it was clear that I wasn't having enough B12.

When my eyesight becomes blurry, I start having peripheral neuropathy again, my hands go numb, I feel depressed... then I know I'm not having enough B12.

So I went back to shots.

I suspect that at that time, that was several years ago, I didn't realize how many lozenges I'd have to have to equal a B12 shot.

Recently I tried having a lot more lozenges, but then I had teeth issues...

so the shots are by far the best for me.

I feel certain that if I had not attempted suicide and been given a test for B12 while I was in hospital, which showed my "profound deficiency", that I would be very sick today with little hope of recovery.

I know I've been very sick... but tetanus is different than if I had the kind of disease that is commonly thought to be one you cannot recover from.

I remain very impressed and hopeful because of accounts like Matty's.

Which reminds me, I need to do a post to RN.

Did you post more about the study somewhere? Sounds interesting.

One of the things that concerns me is that most B12 recommendations, based on lab tests, are the results of studies done on healthy people with intact stores of B12.

My neurologist told me that it takes a very long time to rebuild the stores...

What I found, is that by taking more I reduced symptoms long after they were supposed to have become "permanent" --

so I wish I'd been given more, sooner so that I'd be much more well now.

It is the slowness of this process that I have found to be reflected in my fingernails... In 1997 I had thick, raised ridges on my fingernails... at the same time I had extreme bone pain in my legs and many other symptoms of low B12.

Now I no longer have the extreme bone pain, but my feet do not react properly to temperature... and I have a hard time moving my toes.

I feel that had the original treatment, ten years ago, been better, that is, more B12 for a long initial period, I might be without these symptoms today.

However, I still have moderate ridges on my left ring finger... so I hope that those ridges and my remaining symptoms go away.

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