Hi Rose,

My neurologist said he was surprised I could feel changes in less than three days. I do feel changes for things like bloody nose, numbness, tingling, blurry vision.

It is precisely because everyone is different that people must keep notes on how things work for them.

In terms of it being a minority who feel the changes in an easily recorded period of time, I disagree.

The vast majority of research into B12 shows that it works quite rapidly.

For instance, in the old days before there were B12 tests, doctors would see someone whom they thought might have a B12 deficiency. The doctor would commonly prescribe a course of B12 therapy, and if it worked, then the diagnosis was made that indeed there was a B12 deficiency.

Today, there are tests, and many people are denied B12 because their test results are too high in terms of what the United States uses as a Normal for low... but these people continue to feel the need for additional B12 because of the improvement the B12 makes in their health. That is, they feel improvement with B12, and want more improvement.

It is dangerous for people, it seems to me, to not realize that if they are feeling symptoms of low B12, they should get some and try it for a month, maybe two, and note any differences it makes.

If more people did that, then more people would benefit.

This way, when people go to their doctors for the final say on whether or not they need B12 replacement therapy, there is a substantial chance that they will be told they do not need it, that their B12 level is just fine.


I find that when a doctor tells me something, and I don't have any basis to disagree, that I believe... but when I have a basis to know about myself, then I can sometimes see that the doctor isn't helping me the way that I need to be helped.

I was denied B12 shots over and over again, and sometimes given dangerous drugs instead. That is so upsetting to me.

Now, I have my Time Line and I can see for myself how my body reacted to the B12.

For instance, you were sure that the reason my fingers were no longer blue under my nails was that I had stopped having my period, but when I looked at my Time Line I could see that your view was incorrect.

If I hadn't kept a Time Line I might have believed you were right... and that would have discouraged me from believing that B12 replacement has appeared to reduce my symptoms of iron deficiency anemia...

It's just so important for people to keep notes.

It's like a self breast exam... it's something we owe to ourselves...

(I don't know what is comparable for men, but keeping a Time Line is vitally important for men, too.)















Rose wrote -

The research you are referring to has been done assuming that people are being diagnosed early. People who are diagnosed and treated early (those lucky enough to have obvious megaloblastic/macrocytic anemia) usually respond quickly and recover very quickly. Those are not the people I am addressing.

The fact that some docs will give a shot or two to see if a person needs B12 is better than nothing. But many people were missed because they did not have the response thought by ignorant medical people to be the norm.

I have been suggesting for many years that people keep notes. It is important for them to understand that not responding immediately and obviously does not mean they don't need the vitamin. The trial and the notes need to be kept up much longer to cover that possibility.

Most people do show some response within days to weeks. Some take longer, and after the initial response it is common for a person with significant damage to have strange symptoms as their body periodically adjusts to interpreting different signals as the nerves repair.

I have no problem with your description of your experience. It is important for people to know that your experience is not common. Theirs may be very different.

I don't know why you I don't believe people should try B12. I have been suggesting it and providing support for years. It is important for people to know that if they give it only a couple of months, that may not be enough to determine whether or not they need it.

The danger is in people assuming that if they do not have results that are quick and obvious that they do not need the vitamin. The body can do a lot of work before letting us know what it is doing.

I don't know what you're responding to. It certainly isn't to what I've been saying.

rose

No, not really. The Framingham study, the one that the researcher I wrote to (and talked with) was involved in, dealt with a lot of different people.

They were able to show that the longer symptoms had persisted prior to treatment, the less "total" recovery there was. So they said that early diagnosis was the best.

But in all the subjects there was some recovery.


As far as I know, "docs" don't do that any more: give a shot or two to see if people need it.

But in any case, I didn't think that the course of B12 replacement therapy was ever "a shot or two."

In most B12 replacement therapy that I've seen described there's an initial period of more frequent shots, for instance a shot a day for several days. Then it drops to a shot a week, then a shot every two weeks, then the "maintenance" is set at a shot a month.

It was that kind of therapy that was prescribed and then if there were results the diagnosis was made of B12 deficiency. That's how I understand it.


What I want to bring forward is that I had the most recovery after the holistic M.D. prescribed a shot a day for a year... That is a LOT of B12, and it was only when I had that amount (and sometimes I doubled up) that my peripheral neuropathy that had been such a problem went away.

Happiness. It makes me smile to remember how that went.


It's not a matter of whether my experience is common or otherwise.

It's a matter of each person needing to know what their own experience is, and to record it so that they can refer to it.


I don't know what you mean when you write, "I don't know why you I don't believe people should try B12."
















rose wrote -

Considerthis Thank you for replying to my post on the new members board. I never even thought to look at my finger nails. I have vertical ridges and small moons. I think that I have always had ridges??? One thing I have noticed is that my nails went kind of flat. Anyway here is more info about me:
After the dr. discovered the 209 b12 level ( my TIBC was 340, iron serum 62, iron sat. 18) He sent me to a gastroendo. and he did another blood test. He did not have me fast prior to test. b12 was 293, folate >24, mma 109, homocysteine 5.6 and intrinsic factor was negative. I am also taking 50mcg of synthroid for hypothyriod. All my symptoms seemed to get worse right after the birth of my second daughter in 2005. C-section delivery. Within the last year I had heart palpitaitons that would force me to cought. Dr. did an eeg with showed the irregulat beat to he had me where a 24 hr haulter to monitor it and did an echo. But come out fine. I get dizzy upon standing, my hair has become very thin, I will forget what Iam saying right in the middle of a conversation. A few time while driving, I did recognize where I was or remember where I was going, just for a few seconds. I get tingling in my legs, ithcy tounge, limbs fall asleep easily and I suffer from anxiety. The fatigue is rediculous. I walk up a flight of stairs and need to sit down. Iam only 42 years old. I gues I have always been a little anemic as when ever I tried to give blood they would not except it saying that my iron is too low. Iam going to see a hemotologist next thursday. Hopefully I will ge some answers. Not that I want to be b12 deficient, but it would be nice to finally have an answer instead of everyone (including myself sometimes) thinking that Iam a hypocondriac or its all in my head . I went to Rose's site and found lots of good info. Thanks again.

Hi Cat,

I don't really know about all the tests. I've had some, but it was quite a while ago. Now I've forgotten.

What I pay the most attention to is B12.

Everything you describe is very familiar to me from what I was experiencing when I was low on B12.

I think that having a child is very stressful on the body... after I had my son, more than thirty years ago, I had to have several root canals because the nerves in my teeth had gone.

I wish you would get some Methylcobalamin immediately and start taking it.

If you are only 42, it would seem as if your deficiency might not be that bad... but then again if you've had ridges on your fingernails for as long as you can remember, the amount of B12 that is supposed to be stored in your body may be depleted. Not just a little depleted, but very much so.

I wish you would get the Methylcobalamin in the 5mg form, because that is about equal to a shot a week... and I wish you would take about three a day for the first 5 days...

I think that if you did that you would be amazed ...

Be sure to take notes. Just jot down a few symptoms each day and changes that you notice.

((((((((cat))))))))

Hi ConsiderThis,

Are the ridges in the nail really that indicative of low b12? Do you know anything about the fingernails of a 2 and a 1/2 year old? While looking up low b12 levels on line I came across an article about being pregnant and having low levels that the baby might be deficient as well. Her nails are smooth and pink but she does not have any moons. Next thursday, when I see the hemotologist, that is the last test that I will be taking. Belive me right after the boold work I will take my first sublingual b12. I don't care what the docs say anymore I just want to feel better.
Thanks for your fast reply!!

Hi Cat,

Yes, I believe so.

When I tried to kill myself ten years ago I had huge ridges on my fingernails and I wondered if they were an indication about health.

It was after I was revived that they did a B12 test...

Right now my nails are nearly smooth and I have a bit of moon on some of my fingers, and I am going through the same things - nearly the same things - and suicide doesn't enter the picture. I think that's because my mind is so much more healthy on the level of nerves...


A lot of people don't want to believe that fingernails can indicate B12 levels...

There's a doctor who sends hundreds of people a week to my site to look at the pictures of my nails, and he says it can't be true because his nails are like mine... (and he's healthy)

But the beauty of that is that I am so much better now than I was ten years ago. My nails were not like his a decade ago.


It is true, but it's only useful to those who act on the information and keep notes and see the differences for themselves.

There are a lot of people in the United States (and elsewhere) who can't afford expensive drugs, tests, doctors. If I can reach even some of them, and help them find better health... then that's perfect. That's why I did my site.

(((((((((cat))))))))

You will see the difference once you begin B12 replacement. And the beauty of it is, that obviously the healing won't be overnight... it will be gradual. You will be able to see lines on your nails retreat. I finally got some pictures of mine retreating once I got a better camera. It's great.


A fellow I used to email back and forth with had a grandchild born, and he said the baby had little moons on all fingers.

But I don't know much about children's fingernails... What I do know is that my mother had a serious B12 deficiency, and my son has a B12 deficiency....



I am glad that you have such a clear plan. Very good! You will feel better, I am sure of it... Just be sure you get the Methylcobalamin lozenges, and I'd get the 5mg ones if I were you.

I wish I'd had more in the first years, I think it would have made a huge difference to my health now...

((((((((cat)))))))))

Karen,

I'm sure most people saw, when they read the rest of the paragraph, that I had missed typing a word.

Studying "a lot of people" does not address the criteria.

Cat may or may not see a difference. One size does not fit all. I hope Cat does get better, but you cannot guarantee that methylcobalamin is going to do it.

rose

Cat,

If you didn't take B12 prior to the tests, it is doubtful that you are deficient in B12. However, it is not impossible. A smaller percentage of people have normal MMA and Hcy when deficient.

Even if you are not B12 deficient, you may be helped by the larger dose of methylcobalamin. That has been shown to help some who are not B12 deficient in the usual sense.

Your being only 42 has nothing to do with it. Many especially ignorant doctors believe that B12 malabsorption is only in "elderly" people. That is absolutely not true. People much younger than you can and do develop moderate or even severe malabsorption.

Is your 2 1/2 year old healthy otherwise as far as you can tell? Has she been developing fine? Some babies are born with a defect in absorption and/or use of B12, but by 2 1/2 there would usually be severe affects if not treated, and often death.

Fingernails, as with any other part of the body, can be affected by B12 deficiency.

rose

Hi Rose,

I thought you might have been saying you thought I didn't think some people would benefit from B12, or that maybe you were saying you thought not everyone could benefit from it... I didn't snap that you left out a word.



Here's what I know about B12, there are a lot of symptoms associated with b12 deficiency.

If someone has symptoms of low B12, B12 deficiency, and they take B12, (preferably the Methylcobalamin if they aren't getting shots), then they are going to find the symptoms going away or reducing in severity.

That is something they can count on.

If the symptoms don't go away, then either the amount or kind of B12 they are having is insufficient, or there is something different that is wrong.

But so far, for me, B12 has helped with:
Profound B12 anemia
symptoms from two years of living in hydrogen sulfide which is a nerve toxin
symptoms of tetanus (but not in the same way as it helps PN)
symptoms of PN -- It has really helped with my PN, but not till I had a LOT
depression (which was from low B12, but which my doctors were treating as if it were a disease all on its own)

(just a short list)


















Rose wrote -