mrsD,

It is not histamine intolerance. I never had that before. It is not also food allergy for sure.
I stopped all supplements long time ago too. I only take natural oils now.


this issue is microbe related (parasite, bacteria, fungus, etc). I might have picked them up from these supplements
or another source.

I think they did a blood test once for fungus and candida and it came back negative but I no longer
trust lab results or doctors anymore.

I have been doing 30-day parasite cleansing "purify" and my symptoms are almost gone.
I take some olive leaf extract too.

I have been seeing some strange white things (like mucus) in urine and some things in stool too.
I just have slight skin flakiness but it greatly improved. it seems still healing...

skin marking/dermatography is also less.

I still want to retest for B6. My B12 and eveything else was in normal range.

Can I request labs to test for B6 (non-active form) and pyroxidine?

I want to know if liver is converting the B6 to acitve.

I called a couple of labs and they do not seem to have a clue on pyroxidine.

Hi all,

I would like to share my good news with you. I have been using B vitamins to control my seizures. Vitamin B6 (Pyridoxine) Prescribed for over 43 years. It has now been confirmed, via a genetic test and interesting research, that I have a condition known as 'PNPO Deficiency'. The professor who conducted the genetic research has told me that I am the oldest known person in the world scientific literature with this extremely rare condition.

regards,

Andy

Hi,

I just found this thread, and unfortunately most of the information relevant to my situation is 6+ years old. Hopefully mrsD is still around with all of the excellent information...

A few months ago I noticed petechiae on my thighs. Then my period came early. Then I became exhausted. Then sick and dizzy. Finally just recently, after seeing a dozen doctors and specialists, they've decided that I probably have Hashimoto's, although I don't have the antibodies.

Anyways, a month into this (in June) I woke up in the middle of the night with my left arm numb and tingly and my heart POUNDING. I was terrified and thought I was having a stroke or heart attack. I called the paramedics, went to the ER, and they said nothing was wrong with me. I went home, and it began getting much worse. The numbness in my left arm spread to my right, then into my legs, then feet, then knees, then hips, then my face and the inside of my mouth. I was sure I was developing MS. My GP had no idea what was happening. A week later I call for the results of some labwork I'd had done. I have requested a B6 test, along with B12 and a thyroid panel, and a few other things. I requested B6 because I had read somewhere that it was important for thyroid function.
My B6 was at 76 with the range being 2-29. I began researching, only to find that the numbness was neuropathy, and that it was probably related to the B6. I went in to see a neurologist. I was tested for MS and ALS, negative. Also negative for any LARGE fiber neuropathy, which is useless, as I believe B6 causes small fiber neuropathy.
My only source of B6 was 25mg in a multivitamin I'd been taking for years. I stopped taking it and went on a strict low B6 diet. All numbness faded within 2 weeks. I checked my B6 level again and it was in the low 20s.

That was several months ago and I'm still having some issues getting my thyroid under control, but I have not had any numbness. Recently, my B6 is back up to 29, a couple of points outside of this labs range. I don't know why it would be coming back up.

So my question is, should I start taking P5P? I've had the Organix test done and there were no abnormalities with my B-Complex Vitamin Markers. My folate, B12, magnesium, and homocysteine are all fine. My only issues are the B6 and my low/normal T3 and erratic TSH. I did the 23andMe test and ran it through Genetic Genie and Promethease. I'm hetero for MTHFR C667T and 03P39P, also MTRR A664A. Homo for CBS A360A and VDR Taq.

Mayo's lab tests P5P levels. My immunologist has agreed to try to have my blood sent to them. We're also testing my B2. I suspect I have a deficiency, but if so, would my level drop and symptoms fade when stopping the multi with 25mg pyrodoxine? Would a deficiency that's showing up as elevated pyrodoxine show low levels of P5P when tested or should I be testing something else?

Being heterozygous for methylation genes is a confusing situation.
In some respects these people can appear normal, but the methylation pathways are impaired so that activating B12 and folic acid will not be 100% efficient.

This stuff is highly complex, so I suggest you have an expert help you with your results:

Here is a website link that explains some of the results you have:
http://geneticgenie.org/methylation-analysis-example/

There is another good resource:
http://mthfr.net/

I am not an expert on interpreting genetic results, sorry.

Welcome digifem.

I have been taking p5p for about 1 1/2 years now for pyroluria issues. My liver is weak so I have been taking this product instead of regular b6. Dream recall returned for a few days when I first started taking this product and then each time I have increased the dose. I am currently taking 150 mg of p5p a day. My concern is that over the time I have been taking p5p my phosphorus level has been gradually increasing as measured by hair analysis. It is now in the abnormally high range (300 ug/g with a reference range of 120-190. About three months after I first began taking it, it was at 200. I am wondering if it is the phosphate component of the p5p which might be leading to the high phosphorus level. Keeping in mind my weak liver, would it be better to take regular b6 instead? Would my body then have the excess phosphorus to do the converting on its own? Or is the high phosphorus level a non-issue?

Welcome JanineV.

I think you need to have your phosphorus measured in the blood to learn more.

Phosphorus is excreted by the kidney, and will build up in certain disease states.

http://www.webmd.com/a-to-z-guides/phosphate-in-blood

Here is a long detailed monograph on phosphorus.
http://lpi.oregonstate.edu/infocente...ls/phosphorus/

This mineral is very common in many foods.
Here is a link with the top 10:
http://www.healthaliciousness.com/ar...orus-foods.php

As you can see, many foods are very high and the amount in your vitamin is not as high as many foods.

I think it is wise to get some blood tests at your doctor. Have a Dexa scan of your bones, to see if your phosphate is coming from there. While you are there get a B12 and Vit D level in addition to electrolytes including calcium.

Gatorguy, we have a lot in common, I am an aerospace engineer and also first presented with CSCR, and suffered from a costrochondritis like symptom which led to parethesias and other nasty symptoms... Did genetic testing and found I was a heterozygote for B6-responsive CBS homocystinuria... which causes a defect in the synthesis of B6 vitamin and high homocysteine levels..

Welcome cta7978.