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Old 05-17-2013, 01:57 PM #81
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Quote:
Originally Posted by mrsD View Post
Welcome to NeuroTalk;

I find your post very interesting.

Do you know the actual level of B12 that you tested out at?

It is not very common for a person who is not taking supplements to test "very very high"... but without numbers, very very is not very helpful either. Just like doctors, who will tell you that you are normal when you test at 200pg/ml. (old range). 900 to a doctor using the ranges provided by labs still today may consider that very very high, and in reality it is not, biologically.

The value of the upper range for B12 is to point to potential problems before those show up with symptoms. Leukemias, liver disease, some cancers, intestinal dysbiosis (overgrowth of certain bacteria), and some kinds of kidney disease will present with levels over 1000 when no vitamins or fortified foods are being consumed. B12 is normally excreted via the bile daily, and some is lost that way every day. If the bile flow is impeded/blocked, then this does not happen. Some is also lost from the kidneys but if those are not functioning well, the B12 will not be excreted. Normally there is a ceiling of how much B12 you can absorb from food, since intrinsic factor has an upper limit of availability. Then from there the levels of transcobalamin, limit how much can be carried around in the blood. So getting too much from food is not likely. Supplements of B12 can be absorbed passively without intrinsic factor in the intestine if food is not present, and hence blood levels then can become fairly high depending on the dose consumed. People taking oral supplements of 1000mcg or more a day can easily eventually get levels over 1000 and maybe even higher.

Getting a good mechanical evaluation of the feet and ankles is always a good idea for people with foot discomforts and pain.
The trick is to find a good podiatrist.
I do not take any supplements at all - I had tachycardia and had to get off everything (it was SVT and had it ablated - my first nerve issue). Anyway, my levels tested at 1549 and 1448 for B12 (reference 200-600). B6 was high at 59 and 84 (reference 2.1-21.7) B5 was below 200 as well (ref 200-1800). I do not have any markers for cancer, liver problems, or any abnormal levels for any other tests they ran, which was pretty much everything you can think of from thyroid to catecholamines & metanephrines, CBC, every vitamin, neural disease...you name it. I also had breath testing for abnormal digestive bacteria...normal.

My intenist, at the center of it all, calls me "Miss Enigma"
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Old 05-17-2013, 02:08 PM #82
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Also, I think the burning sensation is pretty sprecific to nerve problems - skip the podiatrist and see a peripheral nerve specialist. The podiatrist will do compression or neurectomy in the feet only - the PN doc will check all of the nerves and branches that could be involved throughout your body. Some foot problems can be caused by nerve issues at the spine, thigh or as in my case, the knee. I wonder how much pain I could have save myself if someone had told me to see the PN doc from the fist searing pain!
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Old 05-17-2013, 02:32 PM #83
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There can be all sorts of genetic errors we are learning since the genome project ended.

Did you ever have a homocysteine test or MMA test? These are specific to B12 utilization and not just a serum level. If MMA is low and homocysteine low, then you are using both adequately.
If your MMA were high...that would indicate something is wrong with perhaps your methylation chemistry, which activates cobalamin to its methyl form which is active in the body. If this cobalamin could not be utilized it would build up some. High homocysteine also suggests failure of methylation chemistry.

Also in the B6 area, B6 (pyridoxine) is not active either and has to be phosphorylated by pyridoxal kinase to P5P in order to work in the various enzyme systems in the body. Methylcobalamin, methylfolate, and P5P are the 3 cofactors to change homocysteine to SAM which then carries the methyl group around to many many systems.

The autism community is pretty active with nutrient treatments and research. There is one study done on autistic children, before vitamins were given (hoping to improve their functioning) that found very high B6 levels in these children.

This is my B6 thread:
http://neurotalk.psychcentral.com/thread30724.html

Lots of information collected there to explain things.

Keep in mind that getting tested when you USE a supplement changes the range meanings considerably. The ranges were done on people who did NOT take anything extra. So they only reflect non-supplemented tests.

The autism study is in post #4.

This is not to say you are "autistic", but that group surprisingly
tested high in the face of no vitamin intakes. There may be other people with unique chemistry who would test oddly too.

Many foods are fortified now, too, which would provide vitamins you may not think of.

Low B5 is unusual... there is a carrier for this vitamin, which shares Biotin and lipoic acid... so B5 might get bumped off depending on the other two's activity etc. B5 is not commonly low in most people. It is very common in food.
Here is a good monograph on B5:
http://lpi.oregonstate.edu/infocenter/vitamins/pa/

Notice low levels cause burning painful feet.

If you are interested or want to find out more, you could get INTRAcellular tests done that show the vitamin levels inside cells, instead of serum type which you probably had.
Spectracell labs is one company who do this testing.
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Old 05-17-2013, 03:34 PM #84
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I did have MMA and Homocysteine testing, both were low normal MMA 107, (range 87-318), Homocysteine 7.7 (range 5.4-11.9)

I am definitely not autistic, and have no family history of autism on either side that might contribute to some sort of abnormal chemical processes. No family history of cancer or heart disease, either. And no diabetes.

I should probably mention that I am thin - about 115 lbs on a 5'7" frame. I am small boned -which definitely contributes to my nerve compression issues. I even have really tiny sinus cavities in my child size head, lol!

I have not been retested for anything in about a year, since the SVTs were discovered. I should probably ask my endo to rerun a few of the abnormal ones, huh!

I guess my main reason for posting was the OP's burning feet, which I could relate to, and am getting progressive relief from working with a peripheral nerve specialist/surgeon. The neurectomy in particular really made a difference as the nerve was so damaged it was misfiring and sharing it's screwy signaling with other nerve branches making things so much worse. I prefer a very small permanently numb in between my little toes to that searing and shocking pain! My doc will be repairing the problems to the top of my foot next week and hopefully I'll be good and pain free for a long while. The tarsal tunnel releases have also made a big difference in how I'm walking and feeling.

You guys on this site are a wealth of information, particularly supplementation and biochemistry, which I'm sure will help a lot of people. But it's also important to remember that the right doc can do wonders, too. If not for my surgical procedures, I have no doubt I'd be in constant agony. There is a point when, in some cases, all of the supplementation in the world cannot reverse the damage done. It can certainly help prevent recurrence or worsening PN, but not always, and not for everyone.

My lifestyle doesn't allow me to just get off my feet and rest for long periods of time to see if they can repair themselves, I needed to get something done because the pain was affecting my life, my family, my work. I just wanted to put out there that a good (do your research!) PN specialist can offer many options to fit what you're comfortable with, especially when it comes to feet. You shouldn't have to feel like you're walking on rocks, electrical wires, or deal with searing fire feet every time you put your foot down. It's hell! There are relatively simple decompression procedures that can make an incredible difference. There are lasers that can help with pain, too while you try supplements or therapy.

I just wanted to let the OP know that seeing the right doc made a huge difference for me, and that a PN specialist should be considered instead of a podiatrist or ortho or self medicating. What the OP is experiencing sounds a lot like what I went through. A PN specialist might help get to the cause quicker.
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Old 06-07-2013, 07:10 PM #85
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I did see a neurologist. With insurance, my visit cost almost $450, and he did nothing for me. Said he didn't think it was any sort of deficiency, wouldn't do blood tests, told me he didn't think it was related to my nerves at ALL. A podiatrist I saw when this issue first started thought I had Hallux Limitus and gave me special arches.

I’ve been neglecting this thread because I’m now battling an old problem I had surgery for 2-3 years ago. It didn’t go well at the time, but the problem went away…temporarily, I guess. This past year has just been a mess. But I wanted to provide an update.

On the bright side, I’m still taking the Jarrow B12 daily in addition to two SlowMag every day (and some other supplements/vitamins), and I AM feeling better. It seems the tingling/burning in my feet is practically gone. The symptom that’s lingering the most is the painless muscle twitches/spasms in my leg, but they’ve slowed down and become less intense. I am still taking daily Epsom salt baths – not sure if there’s anything more I could be doing?

I definitely can’t take a B-complex vitamin. I tried stopping and restarting them twice, and both times it really irritates my interstitial cystitis. They do make a special B-Complex without the B6 for people like me with bladder issues, which I might try.
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