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Old 05-08-2011, 10:31 PM #71
TriciaC TriciaC is offline
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MRS D>
9 year old who is an overmethylator, no histamine, but also with symptoms of undermethylation.
Having silent siezures cannot take some of the supplements prescribed for overmethylation, have had all the blood, urine and hair tests done as per Pfieffer, 18 months ago, have had tests donw since, levels still not right.
Is currently on high B complex but not that sucessful want to have himw in just the B viutamins that were recoimmended for him such as B6, B12 and Folate.
Hair analysis shows high levels of all heavy metals, so waiting for the Paediatrician to admit to hospital for IV chelation.
Siezures also stop the use of Omega 6, and overmethylation stops the use of 5HTP or SSRI drugs.
His diagnosis include PDD -NOS this covers ASD, ODD, OCD, CD, Dyslexia, Dyscalculia, Audio Sensory Perception Disorder, Seperation and Attachment Anxiety.
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Old 05-09-2011, 02:57 PM #72
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Well, this seems far too complex for me.
There are just too many things going on with your son, to offer a simple answer.

I think the question is whether ANY B12, or any folate or any B6 would be indicated. I don't think the methyl forms of folate or B12 are problematic, any more so than the others.

There is a thought now, being researched for autistic patients,
That perhaps this reflects mitochondrial disfunctions. That perhaps the immune stress of vaccines (not necessarily the mercury alone), damage the mitochondria, and hence the cells cannot function properly.

Here is a new article about this:
http://www.the-scientist.com/article...#ixzz1Lc4RYaHa

You could get your son DNA tested for the MTHFR mutation. That would at least tell you if he has problems with activating vitamins in common supplements and food.

I feel for you and your frustration. If anything, I'd recommend only doing one thing at a time, and adding another slowly to see any changes. That way you will see what is doing what.
When you use many things together it can be difficult separating effects of one from the other.

Best wishes to you and your son. It does take time. So I do hope you hang in there.

Quote:
Originally Posted by TriciaC View Post
MRS D>
9 year old who is an overmethylator, no histamine, but also with symptoms of undermethylation.
Having silent siezures cannot take some of the supplements prescribed for overmethylation, have had all the blood, urine and hair tests done as per Pfieffer, 18 months ago, have had tests donw since, levels still not right.
Is currently on high B complex but not that sucessful want to have himw in just the B viutamins that were recoimmended for him such as B6, B12 and Folate.
Hair analysis shows high levels of all heavy metals, so waiting for the Paediatrician to admit to hospital for IV chelation.
Siezures also stop the use of Omega 6, and overmethylation stops the use of 5HTP or SSRI drugs.
His diagnosis include PDD -NOS this covers ASD, ODD, OCD, CD, Dyslexia, Dyscalculia, Audio Sensory Perception Disorder, Seperation and Attachment Anxiety.
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Old 09-27-2011, 06:47 PM #73
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Question

looking for information on using p5p to treat vitamin b6 ( pyridoxine) toxicity neuropathy. i read somewhere that this involves stopping the pyridoxine for 3 days then taking a couple of doses of p5p - lost the link can't remember the dose. Not dead sure I want to try it but would like to find that link.

also FYI someone has reported a case of p5p toxicity after only 2days!
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Last edited by Chemar; 09-27-2011 at 07:21 PM. Reason: linking/copyright guidelines
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Old 11-20-2011, 12:19 AM #74
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Mrs. D,

I had exchanged some messages with you recently in the B-12 thread.

Recently I found out that I apparently have Pyroluria. I did a urine test to Bio-Center Lab in Kansas. The range is 1 to 20. My result was 33! I had been off ALL of my vitamins and minerals for 10 days before taking the test.

I have an appointment soon with a medical group that has a doctor and a naturopath that work together. They said they know how to treat Pyrolauria, so I hope they can give me some guidance.

In the mean time, I got some P5P from the local health food store. It is sublingual, 25mg by Source Naturals.

I already take a good B-complex by Pure Encapsulations that has some P5P in it. I take it with breakfast and never had any trouble. A half hour or more before breakfast, I also take my Synthroid and a Methyl B-12 (usually 5000 mg, Jarrow).

Anyway, today about an hour after eating a late lunch, I took the sublingual P5P. Two hours later, I felt like I was going to have an anxiety attack. I was glad I had only taken a small dose! As I write this, it is almost 6 hours later and i still feel anxious and am getting a headache. Uugh. I know this will just wear off as time passes.

I don't understand why the sublingual P5P gave me anxiety. Should I have taken it WITH the meal?

Testing positive for Pyrolauria means that you need more B6, and I've been reading that it should be P5P. Does it need something else to balance it out? The B-complex that I take, which has P5P in it, does not cause any problems for me.

Now I'm more confused than ever. I have decided to just take what I normally take and stop "experimenting" until I see this new doctor and naturopath. I'm wondering if perhaps a test score of 33 is the "improved good" result of having taken decent B vitamins. Maybe the extra P5P is just too much for me?

By the way, a recent blood test revealed that my B-6 level is perfectly within range. But the people on the Pyrolauria message board say that sometimes that is meaningless, because although it is in the blood, my body can't utilize it properly.
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Old 11-20-2011, 05:37 AM #75
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The best P5P to take is enteric coated (oral swallow).

NOW makes it. iherb.com carries it and it is not expensive.

I don't know how the sublingual works.

Pyrolurics also need zinc.

Blood work for B6 is rather useless IMO. It only shows what is in the serum and does not separate out pyridoxine from pyridoxal.
The SpectraCell type labs test the intracellular levels of various nutrients, and they may be a better indicator of levels. Nothing is happening when nutrients are floating around in the serum, except they are getting excreted by the kidneys.

People with Pyroluria have anxiety issues anyway. It would take time for any sublingual B6 to get to the various sites and insert itself to work. It is very difficult to interpret your reactions when the Pyroluria is causing anxiety itself.
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Old 11-20-2011, 10:09 PM #76
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Thank you for your reply. Can you tell me a little more about the SpectraCell type labs test? Would my doctor order this, or is it something I can order myself? Is it a blood test or something else (saliva, hair)?

Thank you!



Quote:
Originally Posted by mrsD View Post
The best P5P to take is enteric coated (oral swallow).

NOW makes it. iherb.com carries it and it is not expensive.

I don't know how the sublingual works.

Pyrolurics also need zinc.

Blood work for B6 is rather useless IMO. It only shows what is in the serum and does not separate out pyridoxine from pyridoxal.
The SpectraCell type labs test the intracellular levels of various nutrients, and they may be a better indicator of levels. Nothing is happening when nutrients are floating around in the serum, except they are getting excreted by the kidneys.

People with Pyroluria have anxiety issues anyway. It would take time for any sublingual B6 to get to the various sites and insert itself to work. It is very difficult to interpret your reactions when the Pyroluria is causing anxiety itself.
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Old 11-21-2011, 07:06 AM #77
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This is their link:

http://www.spectracell.com/

I think there are other labs... the order must state intracellular testing (not serum).

I think for you, however, you will have some adjustments to make during treatment. It may take a while to get "stable" and have all the systems that use B6 and zinc operating well. You may have been low for a long time, etc.
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Old 11-29-2011, 02:36 AM #78
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I recently read that "jet airline fuel creates airborne carbonyl residues which may block the conversion of B6 to P5P in your body."

I live near an airport...

Does anyone know if the scientific claim quoted above is valid?
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Old 11-29-2011, 07:15 AM #79
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This is what a carbonyl group is:
http://en.wikipedia.org/wiki/Carbonyl

Your body is full of chemicals with this characteristic.

This article explains it a bit better:
http://www.alternativementalhealth.c.../pyroluria.htm

Quote:
Even marginal B6 deficiency lowers glutathione peroxidase and glutathione reductase, promoting mitochondrial decay and raising measurable lipid peroxide levels. Carbonyl-inhibition of pyridoxal kinase, which produces P5P, is very strong. It is possible that higher levels of carbonyls produced by oxidative injury to proteins may exert an inhibiting effect on B6 activation in states of oxidative stress. Besides pyridoxal kinase, the whole family of P5P-dependent enzymes suffer decreased binding in the face of carbonyl inhibition, and certain key P5P-dependent enzymes such as GAD are impaired by oxidants generally.

Thus, there exist numerous ways by which impaired vitamin B6 function and oxidative stress reciprocate. Hydroxyl radical and superoxide even attack vitamin B6 vitamers directly. High doses of B6 may compensate
oxidatively-impaired enzyme and co-enzyme function in high-Mauve subjects.
The drug theophylline has been shown to block pyridoxal kinase in mammals.

The subject of nanoparticles of pollution and their effects on the
nervous system is being published in many science magazines.
Science News had one a year or so ago that had a study in Mexico City showing pollution damaged children's brains.

http://docs.google.com/viewer?a=v&q=...a1QTlLC2Q4b5tA

http://www.sciencedirect.com/science...52231099002526

http://erj.ersjournals.com/content/32/3/535.full
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Old 12-01-2011, 07:22 PM #80
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Default Please help!!

Mrs D.

I am fascinated by all of the information you have posted. My story is this: I was diagnosed with neurological lyme disease this summer. After extensive treatment, I took many vitamins to rebuild/reboost my system. Within the past two months, I started to experience neuropathy (tingling, numbness) in my hands and feet. My B6 levels were recently tested and my numbers are over 100 (no exact value was reported). Neuro cited B6 toxicity as the cause. I was taking a B-Complex vitamin daily, as well as a food-based multivitamin (I have since stopped taking both).
Fast forward to a follow up meeting with a lyme disease specialist, who suggested P5P. Is it possible I am not getting enough B6?
I am afraid of worsening the neuropathy and do not know what to do. Any advice? Should I take something? Avoid certain foods? How long will it take for neuropathy to resolve if it is, in fact, caused by B6?
The neuro has requested that I retest my blood levels after one month (this was two weeks ago).
Full disclosure -- the neuro has suggested that it is possible that I have CMT (due to my high arches).
Thank you in advance for any advice you may have. I am uncertain where else to go as this seems to be a poorly understood area.
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