B6 Toxicity

[chimey]

This is more of a comment than a question, but I would welcome info from anyone who has any experience with this situation. I took a prescription called Folcaps (which had 25 mgs of pyridoxine in it) for a year. In February of 06 I began experiencing symptoms which have now been diagnosed as Pyridoxine (b6) Toxicity Induced Neuropathy. I did not get this diagnosis until August 15, after four MRIs, several specialists and balance testing. My b6 blood level was 81 - the maximum safe level in this test was 32. When reading about b6 toxicity one reads about tingling hands and feet and being "wobbly on your feet" and things of that nature. It can be much more than that. Be careful with Vitamin b6. It's not known if the neurological damage is reversible. Some studies show it is, some show it is not. The damage I have suffered extends to my thyroid, my blood pressure has been lowered (to an unsafe level - it was healthy before), my balance has been damaged - I don't know where my right foot is in space, I've had insomnia, my symptoms are too lengthy to list here. The fatigue that I have been experiencing for the past several months has started to lift now that I've stopped taking the medication, but it is still profound...another hallmark symptom of b6 poisoning. This is a serious toxic situation and one that is not understood by the medical community. I am waiting to find out how much of my life I will get back. I am rebuilding my stamina & neuropathways with an optimistic outlook. And getting the word out. MD's don't know about vitamins. Work with nutritionists. Don't go it solo

[SUSA55]

I HAVE BEEN OFF THE ASPARTAME SINCE NOV 21 AND NO CHANGES SO FAR. I FOUND THAT IT CONTAINS AT LEAST 3 INGREDIENTS THAT ARE ASPARTAME. I AM NOT REALLY COMPUTER SAVEY AND ONE OF MY SYMPTOMS IS FORGETTING WHAT I AM FOCUSING ON, LET ALONE ALOT OF THE BIG WORDS THAT ARE USED.
I DID FIND A SITE (DR JANET STARR HULL) WHO SAYS SHE IS AN EXPERT, BUT IM NOT SO SURE. BUT HER FOREM I CANNOT GET INTO BECAUSE IT IS FULL. SOUNDS WIERD TO ME.
I THINK SHE STATED THE SOME SWEETENERS ARE SAFE. BUT OTHER PLACES IS SEE WHERE THEY CAN BE DANGEROUS.
MYSELF I DONT USE ANY SWEETENERS IN ANYTHING ELSE THAT I EAT OF DRINK SO I GUESS ONLY TIME WILL TELL. I SURE WOULD LOVE TO FEEL NORMAL AGAIN. I NOT SURE WHAT THAT FEELS LIKE ANYMORE.LOL.
DO YOU HAVE ANY IDEA ON RECOVERY TIME ON THIS ONE. IM VERY IMPATIENT.

[gerrysmom]

Fake sugars are toxic - things that have been created in a lab and not by nature - and are in a lot of processed products.

Book "Aspartame Disease An ignored epidemic by H.J. Roberts, M.D., F.A.C.P., F.C.C.P. this book is about 2 inches thick.

Another book by Dr. Joseph Mercola "Sweet Deception"

On you tube if you call up Dr Russell Blaylock and aspartame, there is more info.

[SUSA55]

I HAVENT SHARED ANYTHING HERE IN AGES, SO I THOUGHT I WOULD SHARE THIS AND MAYBE IT WILL HELP JUST ONE PERSON.
I HAD AN EMAIL SENT TO ME 2 DAYS AGO, SO I DID A LITTLE READING ON IT.
ASPARTAME THAT IS USED IN DIET SODAS AND SOME ARTIFICIAL SWEETENERS CAN CAUSE MANY OF OUR SYMPTOMS.
SOME OF THE SWEETENERS ARE STILL SAID TO BE SAFE BUT ALOT OF THE LAST RESEARCH WAS DONE BACK IN 1988 AND SOME TESTS SEEMED TO ME TO BE WRONG BECAUSE I FOUND ANOTHER SITE WITH A FOREM WHERE PEOPLE HAVE POSTED THAT THEY USE THESE SO CALLED SAFE SWEETENERS AND THEY HAVE DEVELOPED ALOT OF OUR CRAZY SYMPTOMS.
I DONT DRINK SODAS OR USE SWEETENERS IN MY TEA OR COFFEE, BUT I DRINK A WHEY PROTEIN DRINK DAILY FOR BREAKFAST. I CLEARLY REMEMBER NOW THAT MY PROBLEMS STARTED A FEW MONTHS AFTERWARD. SO TODAY HAS BEEN 48 HRS WITHOUT IT. NO CHANGES SO FAR, BUT I WILL WATCHING EVERY INCH OF MY BODY AND KEEPING A DIARY. MY WHEY PROTEIN IS SWEETENED WITH  2 THINGS. ONE IS ACESULFAME K POTASSIUM AND SUCRALOSE.
EVERYONE CHECK WHAT YOU USE AND GIVE IT UP OR JUST USE SUGAR FOR AWHILE.
HOPE EVERYONE HAS A GOOD THANKSGIVING.

[Meganamy]

Thank you for your post about enzyme PST. I definitely have a lot of problems with apples, wine and bananas. Chocolates with soy lecithin in them bother me. I have no problems with caffeine though like black coffee or Coke. I'm going to look into activated charcoal. I have been taking a lot of digestive enzymes the past 3 years since I've discovered that they help me. But the ones I take do contain papain, and I know from eating papaya that I'm allergic to that.

I bought some of the ingredients listed in the digestive enzymes bottle that I have, separately, to see which ones might be helping me. The ones I was able to try on their own made no difference. So I discovered that what was helping me was ox bile extract and/or malt diastase. I've learned from an internet search that taking too much ox bile extract is bad for you. So I could be poisoning myself with something else, in trying to lessing my B6 toxicity pain.

[xxxtina]

The neurologists name is Milind Kothari.  He is in Pennsylvania.  Found him online after doing some pubmed research on b6 toxicity.  His name and email came up on the research papers and I just emailed him asking him if my levels were high enough to cause my symptoms.  He replied saying that they are but that I should also rule out diabetes with a glucose tolerance test.
I havent hand any MRIs done yet, or anything other than a b6 test.  Too worried about what else it may be.  My ANA was negative and my ESR was low.   I am hoping its a combo of low ferritin, low vit D and High vit B6.

U should see a hematologist or endocrinologist.  

Do you get any weakness in ur legs or arms?  

[vera731]

I have taken prenatal vitamins for about 8 years which have 15 mg of b6 in them. I have stopped them about 8 months ago and my levels were going down a bit but just went up again a lot. I assume it is not the vitamins then anymore. I am extremely upset and worried about this rise now. My neurologist doesn't t have an explanation.
Would you mind sending me the name of the neurologist who deals with the issues concerning b6 toxity. If you like I can send you my e-mail address.
About your worries with MS. I know how you feel.:) if you haven't had MRIs done maybe you should ask for those, because all 4 of the neurologist I have seen over the years have reassured me that the negative MRI for MS is absolutely conclusive, cannot change even over time. Lupus testing on the other hand might have to be repeated if more symptoms come up.
My symptoms have really been mostly tingling, some cramping and spasms. I have also had joint pains but wasn't sure if that is related. Recently though I have started having burning sensation, sometimes accompanied by pain, on my face, chest and shoulders.
I have been tested for a whole lot of things over the years( neurologists, rheumatologist, hematologist) with no result except a positive ANA( that can be false positive without further positive results) and eventually the high b6. I have always said when I was discouraged that no result is better than a bad result. My problem now I is that I might know what is causing it, but none of the doctors can offer a solution. I will definitely get those test done for the genetic problems that I have found out on these pages but I would also love to find a neurologist who might be dealing with this issue.