Keeping a Time Line - i.e. notes
 

I thought it might be useful to people if I posted a link to the time line I kept ... I've kept them a lot, not all the time.

The first one I kept shows what I experienced after I began B12 replacement therapy.

http://www.health-boundaries-bite.com/TimeLine.html

:)

My mom for awhile kept a daily record of my sypmtoms and meds to see. I'm not sure if she still does. I need to start on my own though to see the connections of daily activity,mood,meds so on. I'm also wondering if something I'm eating is making me feel sick sometimes which doesn't have to do with the leg issue but still.Thank you

All,

Do keep notes. And do so for the long haul. When nerves are damaged, the repair process can take a very long time. If you expect the process to be like getting over an ordinary injury (better every day or week), you will likely be more frightened and confused than necessary.

And if the central nervous system has been affected (brain, spinal cord, or eyes), whatever damage can be repaired will likely be repaired over a period of years.

Be prepared for fluctuations in symptoms, often especially wild and weird prior to vast improvement.

rose

For me, I had significant improvement in all of my symptoms related to low B12 right away and consistently.

When I look back over my Time Line I see that stress always lowered my B12 levels, as shown in tests, though I don't think I put my test results on my site... and in an increase in low B12 symptoms.

I found after my holistic M.D. gave me a prescription for a shot a day for a year, that I had really REALLY HUGE improvement. I got rid of peripheral neuropathy that I had thought was there for the rest of my life.

I can now sleep without an air mattress, just as one example.

So for me, I wish that I'd had a lot more B12 a lot earlier...

I feel that if I had, then I wouldn't have had such numb toes that I didn't feel the broken bit of darning needle that eventually gave me tetanus...

etc.

I just think that more B12 is a way to address serious B12 issues that are of long standing.

Even now, it is helping with the damage I had from living in the hydrogen sulfide in my condo... I just looked again at that time line, and the problems I was having were severe...

So for me, waiting paitently for improvement over many years was a mistake.

But how I would have found the holistic doctor who gave me the generous prescription earlier, that I don't know.

Hi daniella, yes, that's a good idea.

The connections aren't going to be exactly the same for everyone.

In terms of something you're eating making you sick... it can be that if you lack hydrochloric acid that happens. I have a page on hypochlorhydria... you can google it... and it explains this and also that not everyone can or should take hydrocholoric acid.

For me, it's great, but not so for everyone.

:)

(((((((((daniella)))))))))))

If the damage has been limited to peripheral neuropathy (not the central nervous system), it is not surprising that repairs would be made within a year. Even less if the damage was less, and in some of those cases it is a nice direct road to fewer and less severe symptoms.

It is the central nervous system that often takes such a long and convoluted repair route.

And no one should "wait patiently." There can always be another problem, and one should alert to all possibilities, but one should not be alarmed unnecessarily or think that the process is not long and weird when damage is severe and especially when long-standing.

One size definitely does not fit all. It is a very good idea to keep track and see whether there are immediate correlations to what you are doing or not doing.

It is also important to recognize that there usually is no immediate correlation with B12.

Stomach acid is soooo important, for many things more than B12, calcium and iron absorption. Betaine hcl would be a good idea for many here. The standard method of use is to begin with one capsule with a meal, and increase the dose one at a time, backing off one when there is a warm sensation in the stomach in response. And, of course, there is a maximum dose, which may appear on the bottle.

rose

Boy, I sure know about the Central Nervous System, having had tetanus.

For sure the improvements are continuing now, and when I have a lot of stress I still have the awful feeling in my stomach muscles that I never had anytime in my life before I had tetanus, and the muscles tighten and bend me over. This is years later. (and it's not because of a muscle disease, it's because tetanus is a Central Nervous System disease.)

But the fact is that I felt improvement immediately. I felt it and recorded it. Things would improve, even vastly improve, but then stress would increase and I'd be set back...

My experience has always been that taking B12 results in improvement that I can feel on the same day or within a couple of days.

That is, if my hands or left arm is numb, and I have a B12 shot, that numbness is reduced within three hours, and reduced more a day later unless there is stress. Etc.

Similarly, when there's a lot of stress my eyesight worsens... I have a B12 shot, and within hours things are not as blurry... But for my eyesight to be quite clear, it takes a longer time, continued low stress, etc.

What I am saying is that B12 is effective in a way that can be felt pretty quickly.

If someone has symptoms of low B12 and takes B12 and there is no change in the symptoms, then that is a clear warning sign, it seems to me, that there may be something else wrong, in addition.

For instance, when I was living in the hydrogen sulfide, I had many extreme symptoms of low B12, and I had the normal shots I was being told to have for my B12 deficiency... but the hydrogen sulfide was causing more nerve damage than that amount of B12 could vanquish... so to speak...

I believe that had I understood B12 better at the time I could have taken more B12 and not had as bad of damage from the hydrogen sulfide because the B12 would have sort of kept up with ongoing repairs...

For me, it's been a God send that the neurologist told me to keep a Time Line. If I hadn't kept a Time Line I couldn't be so sure of what I am saying.

I encourage people to keep a Time Line so that you can see what your personal reactions are, your personal improvements and what causes you to get worse... what stresses.

I remember a GREAT book I had called Know Your Nutrition, in which the author, who I think was Linda Clark, said that if she were stranded and could have only ten nutrients, the one she would most want to have with her was hydrochloric acid.

I love it myself.

But when I was working on my web site and realized how many different people come and read the different pages, I realized it was important to warn people that it is NOT recommended for people on certain medications and with certain conditions.

I got the impression from the severity of the warnings that it could be dangerous for people using those medications or having those conditions...

So, not everyone should try it, without checking the warnings and seeing if they apply to them.

:)

Karen,

All that may be true for you. Assuming that you do react very quickly to changes in B12 doses, you are in a tiny minority. It is very important that people not believe that "B12 is effective in a way that can be felt pretty quickly." A very small minority find that.

And although there may be something else going on, one size does not fit all in the change of symptoms department either. As a matter of fact, a small minority do not see evidence of the great changes going on in their bodies for many months.

When people assume that there will be short-term differences if they are benefitting from B12, they are in danger of stopping even though they need it. This is very dangerous if the person needs it.

People can take B12 long enough to get their stores up good and strong and then stop. If their body has been working on that stored B12, they may see a positive change after they stop. If they do not realize that most people store B12 for a long time and use it very slowly, they will decide they do not need the B12, even though the B12 is the reason for their improvement.

Those people are then likely to stop taking B12 altogether and eventually (within months or years) begin to incur damage again.

One size does not fit all. Most people do not see those immediate and linear changes that correlate with B12 taken in the short term.

rose

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 -

That is not true. There are problems that may or may not improve. Some may go away altogether, but as the doctor you referred to said, the earlier the treatment the more likely things will improve substantially.

Repairs can continue for years in those serious cases, but there are no guarantees.

That is likely, but it not something a person can count on, especially in early days weeks or months. It is very likely that they will improve, but each case is different. There are some similar patterns in many of the cases, but individual makeups, types and extents of damage are different. And for some strange reason, a very few people do not even see the change until many months later.

Improvement is likely if people need B12. It is possible if they need methylcobalamin specifically. But there no guarantees. And if damage is severe, the process of improvement is likely to be long and bumpy.

rose

The fact is that if someone has symptoms of low B12 and takes a form that their body can use, then the symptoms will either go away or decrease.

If someone has bad symptoms and takes a very small amount, then the amount of improvement may be hard to distinguish.

I had bad PN for years. I never expected it to go away.

When my holistic M.D. gave me a prescription for a shot a day for a year, I thought she must have made a mistake and I didn't use it until after I had tetanus and the pain was screaming bad. Literally.

Then, after a couple of months of a shot a day (sometimes two), it was clear that my PN was a lot better.

The B12 did not cure my tetanus. Tetanus is a Central Nervous System disease caused by the the bacteria clostridia. Antibiotic in fairly heavy doses is required to kill the bacteria. After that, there may be, as in my case, risidual nerve damage.

B12 helps with the nerve damage, but after two years all of the nerve damage is not healed.

Here's the thing, though. If I had not had all that B12, would I be very much more sick than I am? I think that without a doubt I would be.

I am especially convinced I would be a lot more sick because recently when my lights were shut off (I have a page on that and on getting solar to avoid stress :) ) I found an old medical certificate my holistic M.D. had filled out for the power company and on it she said I have fibromyalgia...

Only when there's little stress (ha! I sure wish that was more often) I am so fine I know I do not have fibromyalgia. :)

It is vitally important for people to keep notes of how B12 works for them, and in what amounts. It is very important to keep track of what symptoms have been reduced, and to keep track of what kinds of things makes them rear their ugly heads again.

:)




















Rose wrote -

PN is not what I'm talking about. If that is as far as the damage has gone, the problem will often be gone within weeks, months or a year.

I am talking about severe damage that usually does not go away, and sometimes repairs only partially over years. Central nervous system damage is what I am talking about. The "combined degeneration" of the spinal cord and even sometimes damage to the brain, which is the term for nerve damage caused those who go untreated long enough.

And the amount necessary depends on the level of malabsorption, not the amount of damage. A "small amount" will not do anyone with severe malabsorption any good, even if they have a tiny bit of damage. The damage in that case will continue until they get large enough doses to stop it.

A "small amount" consistently enough will do someone with mild or moderate malabsorption a great deal of good, even if it only stops the damage.

rose

Different people have different symptoms of low B12. Some people experience problems with their nerves, others with memory, others with balance, etc.

Not all people have changes in the shape of their blood cells early on.

It has been suggested that pernicious anemia, which years ago is what B12 deficiency was called, is a form of B12 deficiency that appears after a long time with low B12. It is a lack of intrinsic factor.

When I had tetanus, which is a central nervous system disease, I had so many different symptoms/health problems that I could not identify where one left off and another started.

For instance there was the inability to lift things... they were suddenly too heavy. My Brita pitcher with an inch of water in it was almost but not quite too heavy to lift.

I'm so silly, that I thought my kitty must have gained a lot of weight when I was sick and couldn't play with her, because she'd gotten so heavy I couldn't pick her up...

Once a friend brought me some bologne.... (how is that spelled?) because she thought I might like to have something to make sandwiches out of... and it took me days to open it... I was just not strong enough.

It always seemed to me that it was my muscles, there was some problem with my muscles.

The fact, however, was that it was my nerves.

My nerves made it hard to breath, they caused a huge extreme pain in my thoracic diaphragm, they made it impossible for me to stand long enough to take a shower... so I got very dirty ... literally, I was a crusty old woman.

The nerve damage was severe and the homeless doctor told me that's what was causing a lot of the problems I was left with.

(My home was foreclosed, so then I could see the homeless doctor. Up until then, I didn't have enough money for a doctor to see me.)

* A dynamite thing is that I was able to save my home and I'm still in it. I filed bankruptcy... :) And then I had time to sell my rental and pay the arrears on my home.

It's because I did that, I think, that the state court judges are so angry at me and foreclosed my condo without any notice to me, so I couldn't save it using federal law.

So it goes... the old grudge reaction at work.

It I can just not get too stressed, ... I hope, I need to keep fighting this out in the Appeals Court.

Today, if someone wants to file bankruptcy they need to have been in debt counciling prior, I think, in order to avoid it being dismissed. So if any of you are in dire straights financially, I would for sure get debt counciling so that bankruptcy is an option for you. :)

I appear to also have forgotten which kind of council is spelled which way. :rolleyes:

The reason it is so important for people to keep notes about their symptoms, vitamins, B12 tests, etc, is so that they can see what is happening.

It's so easy to believe that something is or is not happening.

So to know what is happening, to be able to look back and see what the actual results were, you need to have taken notes for yourself.

:)

Take notes!

Of course, symptoms vary, and of course many being damaged by B12 deficiency are not anemic. That is what I have saying for years. That is why I have been bothering to do this. I don't what that was in response to.

Memory, other psychiatric problems, severe motor problems (and often resulting imbalance), etc. are central nervous system problems.

Pernicious anemia is not a form of B12 deficiency. Pernicious anemia is the inability to secrete intrinsic factor. Pernicious anemia has been known for many years now to be the primary cause of severe B12 malabsorption. If someone take lots of B12 and has been deficient for years, they will almost surely still lack intrinsic factor; thus, they still have "pernicious anemia."

Normal nerve function is necessary for normal muscle function.

rose

Pernicious anemia, which my mother had, has been described in some recent research as an advanced form of B12 deficiency.

Please notice how not everyone in a study has exactly the same results, and the different results are reported.

There are more that I could quote.... but this shows the general idea.



















Rose wrote-

Several posts at the end of this thread have been removed.

Some may come back, but I'm letting readers know, and I'm sorry for any confusion.

KD