vera,
what were or are your symptoms, and how much were you supplementing?
my levels were high but not alarmingly high. i wasnt too satisfied with the whole b6 toxicity diagnosis, so i emailed a neurologist that specifically does b6 toxicity studies and published the most research that i have been able to find on the net through pubmed and actual research papers.
he emailed me back and said that my levels were definitely high enough to produce toxicity and symptoms. still, these MS symptoms are very disturbing and frightening.
Im not so sure of the measurements but they were in ug/L. Labcorp was the lab we used and they only count up to 100. I also found out that my count actually went from over 100 feb 2012. To 80 in April to 70 in June now back to over 100 in October. Thank You
Hi all.
I’l Try to summarize my findings along these months. I Have try some treatments, and I’m going to tell you the my conclusions. My evolution, after my B6 toxicity , went through several phases:
Peripheral neuropathy in the arms, wrists, feet ... etc. Food intoleraces... (every time I ate, it hurt my body).
The center of the right eye was blurry ... etc..
Bad immunity, many viruses, bacteria ... etc.. Always ganglia swollen throat ... etc.
Flu symptoms, without flu.... Extreme fatigue. Crying for nothing. Irrritable bowel syndrome... etc.
I started researching on the progress of the dra Yasko, and thought that surely all of us, had some defect in the methylation cycle (perhaps MTHFR polimorfism as many of yours, maybe CBS polimorfism,... maybe SUOX polimorfism in the transsulfuration pathway ... etc)
At the same time, I start to study about Phenol Sulfo Transferase (PST), an enzyme involved in the transsulfuration of amino acids, which eliminates toxic sulfites converting them to non-toxic sulfates. My research for this line, was because there is a lot of pages that talk about that a lot of B6 in the body, inhibits the action of this ezyme PST, and the result is a defect in the transsulfuration pathway, with all of this symptoms... (sulfites intolerance, phenolic, salycilates or amine intolerance like apples, some vegetables, wine, bananas, chocolate ... etc ...), in addition to the symptoms of sensitivity to phenolicos, due to a malfunction of this enzyme PST, gives all the symptoms that many of you have seen: darck circles under the eyes, anxiety, night waking, depression, night sweats ... etc..
so ....
I went to a specialist from Spain, who knows dr. Yasko and who also makes genetic panels (more extensive than Dr. Yasko’s SNP Panel), and the result is that in my mutacions there are MTHFR (+ / +), and SULT1A1 (+ / -) ... This means that my methylation cicle is not working properly, but also my SULT1A1 polymorphism makes that my transsulfuration pathway don’t works 100% … may be at 50%. . If we add my b6 toxicity , the result is that I have inhibited the functioning of the enzyme PST (Phenol Sulfo Transferase), and as a consequence I have difficulty processing the sulfur products (phenolics, salycilate, and amines). I have troubles generating good sulfates in my body, and as a consequence, the lack of good sulfates in the body gives me irritable bowel syndrome, and low PST produce too, some defect in the generation of digestive enzymes, … it’s the reason why all of you have feel improvement when taking digestive enzymes ... . Because it is one of the consequences of the lack of good in our body sulfates .....
SOLUTION????
Well, the first step of my treatment was digestive enzymes during a month. That improved my digestion and my Irritable Bowel Syndrome.
At the same time, I also take activated charcoal between eaten, or even with the meals, to remove of my body metabolic toxics that my body can not process .... (With activated charcoal I felt a lot of change. Fatigue disappeared, my pain after eat was low, and my food intolerance improved).
Enzymes, as I said, my neurological symptoms improved after meals, and my irritable colon, but increased anxiety …so…. I realized that I was taking enzymes had bromelain, papain, quercetin ... etc, all rich phenolics, and therefore unsuitable for those who suffer phenolics sensitivity.
From there, I decided to take a NO.PHENOL enzymes from Houston company, and some enzymes Solaray KAL- (absorb N-Zyme), which are suitable for sensitive phenolics.
Besides, my doctor started me Metilcobalamina protocol, metilfolto (5-MTHFR), L-Taurine (to increment my sulfate), and SOD (because I have a polymorphism in a gen that generates antioxidant SOD (SuperoxidoDismutasa). It is also mutated + / +.
The result of this protocol doesn’t work for me . I ‘ve felt TERRIBLE. With a brutal anxiety, with more pain, muscle spasms .. e.tc, more ... e.tc food intolerances. (I do not know if it was for the vitamins, for antioxidants SOD, whether it was rich in sulfates taurine ... etc, or even by the excipients b12 drops, which are sodium benzoate, rich in phenolics ....) the question is that for now I have left this protocol and I have decided to slow down and step by step .....
CONCLUSION ..... For now I will continue with my digestive enzymes protocol, especially for phenolics sensitivity (NO-PHENOL Houston, and KAL Solaray Absorb N-Zyme… And I Take some Cloruro of Magnsessium because Magnessium Ions reverse the PST inhibition that B6 produce…..).
I also continue with 3 pills ( 200mg each one) of activated charcoal after meals to prevent further poisoning my body more. (By the way that my blood ammonia was high....)
Sometimes I take “tetrazepan”, for my muscles and anxiety ….just when the symptoms are uncomfortable to do my normal life.
I hope my experience can clarify some doubts about the symptoms that some of you have.
I personally think that the B6 toxicity + Genetic predisposition to a malfunction of the methylation cycle (methylation + folate + urea + Krebs) = metabolic alteration than remains in the body, even after removing the b6 of our body.
Personally I think that inhibited PST enzymes and damage caused by this toxicity, will solved with the time….But in the meantime I think it's also important to suplement with enzyme’s + activated charcoal…. To try not intoxicate us more, and to be worse.
I avoid this poisoning with activated charcoal + digestive enzymes especial to phenolics sensitive. This keeps me steady, while the body heals slowly by.
I hope to help you, with all of my experience….and if you have any questions about genetic testing that I've done .... I can detail to you.
I attached a page talking about phenolics sensitivity, and their symptoms. You will see the symptoms are many that you share. (dark circles in the eyes, fatigue, night sweats, anxiety…etc)
I hope it can helps you.
If you search on Google PHENOL SENSITIVITY, AMINE SNESITIVITY or salycilate SENSITIVIY you will find lot of interesting information that I think can help a lot of yours.
Ex:
http://www.allnaturaladvantage.com.au/Phenol%20Sensitivity.htm
http://www.danasview.net/phenol.htm
http://www.allergy-details.com/chemical-sensitivity/phenol/
http://www.enzymestuff.com/conditionsensitivities.htm
Maria
PD: thanks to Gerrysmom beacuse she gives us a lot f information to try to find our health way ….
THANKS and sorry for my terrible english.
vera731... what were ur units measured in? There is NMOL/L or ng/ml.
I JUST ALSO FOUND OUT I AM DEFICIENT IN VITAMIN D. Vitamin D deficiency apparetly causes alot of pain, and can cause neuropathy etc. I read that on one of the forums on here.
I still have tingling and minor numbness, weakness in my leg, buzzings, and now my right foot, on occasion will feel very hot/burning.
Some of these symptoms are new. Why am I getting tingling in new areas where I never had this before? So worried about MS.
I am so appreciative of all the information I have found here. It is also so overwhelming. I have been struggling with neuropathy along with lots of other symptoms, which seemed to have been unrelated, for about 7 years now. Finally one of the many doctors have found that my b6 was very high( they don't give numbers over 100 so all I know it was over) over a year ago. I was not taking any supplements at that point but took prenatal vitamins for about 8 years up until then. What has really scared me is that after the levels going down to 80 after the first half year of the original testing it just went back up again to over a 100. I assume it is not only from the supplment I once took anymore, it must be some other problem ofmy body not able to metabolize b6. My neurologist ( from Weil Cornell) said that it is very strange but doesn't know where else to refer me but to a dietrician. After reading all these post I think I should get all these genetic test done. So, I was wondering if you could answer some of my questions:
1. Can a regular doctor prescribe these tests so they would be covered by insurance?
2. Can you recommend any doctors who are familiar with these issues in the NY ( even CT or NJ) area?
3. Has anybody had the experience with the b6 levels going up and down?
Thank you so much in advance! I feel so confused and worried. Thank you.
Got my b6 results back. Level was 141.
I was one of the lucky ones who got diagnosed right away. The first thing she asked me was what I was taking. After going through all the supplements I was taking , which included b-100 complex, multis, and b6 alone, she (MD) was sure it was b6 toxicity.
I could have gone to neurologist after neurologist, had mris, spinal taps, nerve tests, went to hematologists, rheumatologists and psychiatrists.... and maybe some one would have checked my b6.
Luckily, I saw a very knowledgeable MD who knew what it was right away.
I cannot believe more people dont know about this. And I cannot believe how many people take this stuff without knowing the damage it can cause.
Some of my symptoms:
skin sensitivity
numbness
tingling /prickling
electricity/buzzing
muscle weakness
weakness
dizziness
severe fatigue
anxiety
irritability
THERE NEEDS TO BE MORE AWARENESS about the dangers of b6.