NUTRITION COMMUNITY
B6 Toxicity
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Avatar_f_tn
are you tired and panicy and can't sleep, were you like this before, or are you only like this since taking the B6?
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Avatar_n_tn
hiya,
i took it was i wanted to lengthen my luteal phase and there is lots of forums of people taking this b6-complex 50mg daily and apparently it really works.. never again!!

But i have good news.. i am feeling 90% better today - i have cut out all b6 from by diet and went yesterday and saw a chinease medicine guy who immediately gave me cupping and acupuncture and i tell you, i slept for 10 hours straight last night, no anxiety or  panic attacks (which only started happening on b6) and the tingling has 90% gone.. feel a bit weak today but i can tell i'm on the mend. they should put a serious warning on those pills..

So anyone out there suffering, i can really recommend cupping and acpuncture. Here's to everyone getting better
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Avatar_f_tn
good news that you are mostly better. any vitamin/mineral supplement that is incorrectly used or used when the body does not need it can cause a lot of trouble
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Avatar_f_tn
I have severe burning tongue, lips and tongue, now drooling too.  Terrible balance, numbness in arms legs, feet and face.  Have IBS and severe GERD, insomnia and severe depression.  Kept telling my internist about the burning mouth issue and he would just brush me off.  Finally decided to go to neurologit.  Went and had tons of blood work, CTA of brain an nerve conduction studies.  

Brain showed no aneurysms, stokes and was within normal limits.
\Nerve conduction studies showed neuropathy but not brain related.
Neurologist said all  blood work also normal.

Thank God I asked the lab to fax me a copy of my blood work (I am a nurse)  I pointed out that my B6 level was 61.  The neurologist said "Oh that's nothing."  I said, "Sir please do some research on elevated B6 and call me back."  Thank goodness he didn't get a God complex and did.  He called me back 2 days later  and told me the B6 was the cause of all of my symptoms.  I do NOT take any vitamin supplements.  I did some more research and found a link on an ALS board aying there is a genetic defect prevalent in people of Scotch Irish decent which I am, called Enzymopathy of polymorphism of B6. All this means is that the enzyme that converts B6 into useable P5P is too big (poly) thus our bodies cannot rid itself of the excess.

I also have severe dry eyes, nose mouth and vaginal.  I had the neurologist test for Sjogren syndrome and it was negative.

OK now that I know what I have,  how can I get rid of the excess and feel normal again.  Please, please help!

Darlene
Louisiana
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Avatar_f_tn
if I were having your problems I would try to find a doctor who is trained in biochemisty, I would want someone who is trained as a proper doctor but has additional training and understands biochemistry in the body. Whatever problems you have they are too complex for one's local GP. If I am reading your post correctly it sounds like there is high level of B6 in your body which your body cannot use, on the one hand you have toxicity for unconverted B6 and because your body cannot convert it into a useable form for the body to use your body is then B6 deficient, if this is the case you cannot expect doctors without special training/knowledge to be able to help. If one is B6 deficient then one will end up with all sorts of problems the body needs B6 (p5p) for lots of things. If this is what is going on with you then you might have various deficiencies. These things are very complicated
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Avatar_f_tn
I wanted to come back and update about my experience with acupuncture. I went to several sessions in order to give it a fair try. The treatment with the needles didn't seem to make a darn bit of difference. It didn't make things worse, luckily. It also didn't make things better.

Meanwhile, the acupuncturist (who was licensed, thanks for the tip, Susan) tried to get me to eat more alkaline foods rather than acidic foods in order to maintain a good body pH. I've researched that a lot and it seems to be good for good health in general, but a lot of healthy foods, as you all know, are high in Vitamin B. So then I ended up in more pain.

Finally, I stopped seeing the acupuncturist. I'm glad I tried, but it didn't help me with the pain.
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Avatar_f_tn
That's very interesting about "there is a genetic defect prevalent in people of Scotch Irish decent." It explains why some people are more sensitive to B6 supplements than others. I'm also of some Scotch Irish decent. I know that people of Irish decent are often linked with Celiac's Disease. I'm having other health problems (seemingly unrelated to B6 toxicity) and literature about my other health problems indicates that gluten intolerance might be causing problems in my intestines which causes problems with digestion and metabolizing minerals and vitamins. That literature goes on to say that the digestive problems can cause eczema and other skin problems which I also have.

I went 3 weeks without eating gluten, but did not see a change in my health, so I'm not sure that applies in my case.
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Avatar_f_tn
I have just been diagnosed with high levels of vitamin B which may explain many of the symptoms which I have experienced over the years (similar to what you all describe but add to that tightness of breathing, as though I can not get enough oxygen).  As with many of you, I "look fine" so the tendency is always to chalk the condition up to stress and recommend an anti-depressant.  I also have had shingles which may play into this ongoing saga of pain and discomfort (discomfort on the good days),

So, with blood work showing a high level of B6, I don't know what to do because I am not, and have not been, taking supplemental vitamins of any kind.  (I did just this month start taking a Calcium/Vitamin D3 pill when my vitamin D level showed up a little low, however.)

I am now searching for healthy foods which I can take to reduce the levels of pyridoxine in my blood.  Of course, my situation, as with all of you, is probably more complicated than just changing my diet.  There may be some genetics playing into this as well, although I am not Irish or Scottish.  There may be more tests that I need to ask for.  Any information on the right tests to ask for and information on specific foods that seem to work to reduce toxicity would be appreciated, though "the right foods" are also probably highly variable depending on the individual.  
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Avatar_f_tn
Has anyone on this forum notice symptoms becoming so much more intense to the point of unbearable after stopping the B6 close to 2 years?
In about 5 months, I will have been off of B6 for 2 years. This week has been a living nightmare! Oral pain and peripheral neuropathy has greatly intensified. I am having heart palipatations and breathlessnes. Awful head
pressure and tinnitis in one ear. I have gone through bad times before, but never like this. I do think my recovery will take longer because I was having symptoms of nerve pain, numbness etc for four years before getting a diagnosis. But if anyone has almost or fully recovered, I would welcome your thoughts on this.....is this normal to have horrific setbacks during the recovery process?
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Avatar_f_tn
Can anyone on the forum explain something that has puzzled me for a long time. WHAT IS THE DIFFERENCE IN THE NERVE PAIN, BURNING, STINGING, NUMBNESS ETC THAT YOU EXPERIENCE AS YOU HAVE BECOME TOXIC FROM THE B6 AND THE NERVE PAIN, BURNING, STINGING, NUMBNESS YOU EXPERIENCE AS YOU RECOVER ONCE YOU HAVE STOPPED THE B6. As for me, I cannot tell a difference in my pain from the beginning......when I was taking B6 in supplement form and now almost 18 months after I have stopped. I see no difference in the way
those symptoms feel......it is the same. I have read that the nerves will burn and sting as they are coming back alive, but mine have been doing that from the very beginning....when I was getting toxic.
Can someone please explain this to me???

Thank you!!!
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1478335_tn?1287374339
Hi Susan, I'm 98% healed almost 2 years out - was 100% a few months back but celebrating with a junk food day was an instructive lesson ( worst 5 hours of my life but now I absolutely know what works and what doesn't for me )

I have not experienced any recovery pain as you describe it - any exacerbations  of pain was due to triggering factors ( I once even tried half a Berroca out of curiosity - bad move  ) I decided to treat it with orthomolecular anti inflammatories, supportive B vitamins and anti virals - please see research linking MS to shingles. Suggest you check your vitamin D status is high normal.

summary: good
raw vegan food
thiamine b12 folate riboflavin fishoil vitamin D and C lysine
sunbathing, electric blanket and very hot baths
exercise
frequency specific microcurrent

bad: almonds caffeine and cacao or chocolate in quantity. Sugar and possibly salt.
Sitting still especially long car trips

Keep looking - your cure is out there.
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oh i forgot
@Wallies - yes wrist weakness was my first really noticeable symptom too - my collagen just fell apart! hence Lysine and vitamin c supplements were added early

@smorris joint popping and clicking dreadful isn't it - yes that was an early symptom too which went away eventually; think took about 6-8 months to completely resolve.
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Avatar_n_tn
Dear All

I haven't been on the board for a while as it starting to frighten me a little so while I was healing I stayed away.

I just wanted to say that I feel 99% recovered from the B6 nightmare that started for me in June this year and apart from some occasional joint pain and still having to wear wrist splints at night for carpal tunnel I don't have any bad effect.

It has taken me 6 months to recover, however I did only take B6 supplements for a week before I became toxic.  Lucky really, it could have been much worse.

The whole of the medical proffession are still covinved I have had a strange virus but not much I can do to change that.

Anyway, thank you for your support in the early days of my illness and I wish you all the best for your recovery.

Cx
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Avatar_f_tn
UNKNOWINGLY I WAS TAKING B6 IN A 10MG MELATONIN TO HELP WITH SLEEP.  I NEVER READ THE BACK UNTIL MY DOCTOR TOLD ME ABOUT THE TOXICITY. I WAS USING THE MELATONIN ABOUT A YEAR TAKING 2 A NIGHT, 1 PILL CONTAINED 500MG OF B6. I STOPPED THE B6 ABOUT 8 WEEKS AGO. I STILL HAVE ALL MY SYMPTOMS EXCEPT THE FEELING IS SOME WHAT BACK IN BOTH THUMBS AND INDEX FINGERS. I STILL HAVE THE ITCHY RASH ON 1 ELBOW AND SOMETIMES THE TOPS OF BOTH HANDS GET ITCHY FOR HOURS, THE ELBOW IS FOR WEEKS AT A TIME. BEFORE I WAS DIAGNOSED I WENT DOWN TO 98LBS, I AM UP TO 110, JUST 5LB UNDER NORMAL. MY DOCTOR TOLD ME RECOVERY IS 6 MONTHS, NOW I AM WONDERING IF SHE JUST READ IT ON WEB MD, I DID SEE IT THERE. I TRIED ACUPUNTURE, CUPPING, DEEP TISSUE MESSAGE, YA SPENT ALOT OF $$$. NONE OF THESE HELPED. THE MOST ANNOYING OF ALL THE SYMPTOMS TO ME IS MY HANDS, BETWEEN THE TINGLING, NUMBNESS AND PAIN I COULD AMPUTATE THEM SOMETIMES. PEOPLE AROUND ME DON'T UNDERSTAND WHATS GOING ON INSIDE OF US. BECAUSE WE STILL LOOK NORMAL. THEY DONT FEEL OUR FRUSTRATION OF SIMPLE THINGS LIKE ZIPPING OUR PANTS OR HOLDING A FORK, AND I DROP ALMOST  EVERYTHING I PICK UP. AFTER USING THE B6 AT ABOUT 1000MG A DAY FOR ABOUT A YEAR DOES ANYONE HAVE ANY IDEA OF RECOVERY TIME. I AM 55YR OLD FEMALE AND STARTING WEIGHT WAS 115LB.....AND GOOD LUCK TO ALL OF US AND OUR 100% RECOVERY :)
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Avatar_f_tn
Hi all. I haven't been on here for a loooong time. I had B6 toxicity a long time ago, probably 10 years. I am not of Irish descent (not even close), but was clearly extra sensitive to it, since I was only taking 50mg per day for a year or two. I'd just like to add a few comments in response to some of the postings above, in the hopes that it might help someone. First and foremost, recovery can take years, but it does happen. All by itself. I tried a zillion things to speed it up, and the ONLY thing I found that seemed to actually help (for a day or maybe two) was to get a lot of exercise. Reportedly it uses up the B6 in the muscles, or something like that. Anyway, it really did reduce symptoms the next day.
  One person above suggested P5P. I tried that multiple times - it did nothing at all. I also tried B12, since someone at the time thought B6 toxicity was just an imbalance of B6 and B12. That didn't help either. In the end, the cure was just plain time. I understand the very strong desire to speed up the process, because it's so bloody unpleasant (at best). But your efforts might be better spent making sure you avoid all B6, and distraction.
   Panicky feeling - yup I had that, and the accompanying inability to sleep. Definitely B6-related.
  Someone asked about rashes on the chest and back. I had that too (like little tiny pimples) when I was toxic. It completely went away once off B6, and never came back. So I definitely chalk that one up to B6. Likewise with the pressure sensation in head, and ringing/popping in the ears. I viewed all these things as nerves waking up and recovering, and starting off with a bang. They need to recalibrate basically, and the recalibration is a rocky road. But hang in there.
  B6 is stored in the body.in the muscles. The half-life is about 3 weeks, which means that if you are toxic, and stop B6, depending how toxic you were, you really need on the order of a month or two without B6 before your levels approach normal, and the damage stops.
  If all of this has been repeated over and over, please forgive me. I didn't actually go back to catch up on all the posts. I'm just amazed that so many people seem to have this issue. Back when I had it, there were no forums about it, and only one doctor acknowledged that it could be a problem.
  10 years later I still have parts of 2 toes that go slightly numb at times, but no other remaining symptoms. My advice is to NOT start adding all sorts of odd herbal things and other vitamins and misc stuff into your body. It needs to be able to process the B6 and get rid of it, and not be tied up trying to get rid of other stuff as well. Just my 2 cents.
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Avatar_f_tn
Very well said Nina! I have tried a few things to help healing, like adding B12, but that only made me feel worse. Since then I have been just letting my body get on with healing on its own and have found that is what is best for it. I have chenged my diet in a few ways, increase in natural sources of B12, magnesium, selenium etc, but only in natural forms. It was man-made chemical versions of vitmins that caused me all my problems, so I am avoiding those and sticking with the natural things my body knows how to deal with.

I am now 11 months into healing and feeling much better. symtoms (symptoms) do get worse in the week to 10 days before my period but then get better afterwards, and they are nowhere near as bad as they used to be. still get buzzing and vibrations in my feet and toes, and shocks and zaps in my hands and fingers, and occasional headaches/face aches, some cramping. ringing ears still, and congestion/stuffed feeling in left ear but am thinking that might be anxiety related rather than B6.

swift healing all!
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Avatar_f_tn
Frankly, I think it's possible all those things you mentioned are B6-related. Let me know in another year. I betcha they're all gone.  ;-)
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Avatar_f_tn
I think I have B6 toxicity but complicated by mercury and lead poisoning. Have had all mercury removed from my teeth and am on a lead and mercury detox program with slight improvement from severe burning in my feet and up all my legs. Amitryptilline makes no difference to the pain and neither does Tramadol. I had read about B6 but those I spoke to seemed to think it was weird. Have been taking 50mgm for about 10 years but then also added more from other supplements. I stopped taking my multi B about 6 months ago as my B12 was extrememly high. (have never had a B6 test.) About one month ago I started my multi B again and gradually started to get worse - pain all day and right up my legs to my thighs. So I have stopped taking it - maybe a little better but too soon to tell. I go to a Dr who has a degree in nutritional medicine but I have never spoken about my B6 intake. I need something to control the pain while I continue to detox and stay off the B6.

Have been doing a lot of research on this and came up with a product called Normast. It is a substance normally found in the body but not in enough quantities to act as a pain reliever.  I have been taking it for the last 4 weeks but about the same time I started back on the Multi B and found the pain was getting worse not better - so I really don't know how effective it will be yet. It is supposed to be highly effective as a neurological pain killer. Everyone should check it out as the time frame for improvement seems to be quite protracted and life is a misery with this pain. Website for buying Normast is: www.ergomax.nl. Is expensive. Also here is a website that gives you access to studies on its effectiveness. www.neuropathie.nu or hu - can't read my handwriting. Read the article listed on the top left hand corner in English to give you some background info.
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Avatar_f_tn
thanks for the info on exercise and not using any other vitamins does make so much sense, its just that you read so many things that others have tried, and i am sure we think that its helping because we are so determined to feel better. i think i will use your method of  physical activity and no vitamins. the days that i am at work i feel the best. i work in retail so i am walking, lifting, bending, and climbing all day. don't know if your way will speed the process or not. but i will feel better i already know this...thnx susan
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Avatar_f_tn
In response to your post, it is hard to tell exactly how long recovery takes.
It depends on how much you took and how long you took B6. I was only taking very small amounts and became toxic. I read somewhere on the internet that taking a cheap vitamin with B6 can actually be the cause of B6 toxicity. It also said to take a more expensive vitamin if you want to take vitamins because the cheaper one is harder to break down. Has anyone read or heard that?
I was told at the time of my diagnosis that recovery can take up to 3 years. It is a slow process. I think keeping a journal is a good thing.
I am close to two years and still having issues. I try to keep positive thoughts and try to distract myself. As for me, exercise is good for you, but I also suffer from fatigue if I overdo it. My feet get so numb and start having burning sensations that some days I can only walk one block.
I have alot of joint cracking, snapping and popping as well as ringing in only one ear.....as well as fullness sensation. I hope this is a B6 issue and  not something else.
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Avatar_f_tn
Thanks for coming back and telling us there's a light at the end of the tunnel. It's very very much appreciated!

I stopped taking B6 in 2008, and I'm still suffering so it definitely takes longer than 3 years to heal. But I keep having setbacks. For example, two weeks ago because of eating too many cookies during the holidays, I got heartburn at night. So I would take one or two Zantac. After a week of this, my B6 pain was significantly worse again. I made the cookies myself with unenriched flour (that's kinda hard to find in the US) so I know they didn't have a huge amount of B6 in them. That must mean there's something with B6 in the Zantac.  Maybe the resin that binds the pill together. Now I'm set back in my healing again. Drinking a pot of tea in an afternoon can set my healing back at least a month. Tiny little things have huge painful effects.
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Avatar_f_tn
if you stopped taking B6 you do not continue to get B6 toxicity - there is always the possibility you have good or high level of B6 in your blood, but it does not necessarily mean your body is getting to use that B6. Your body needs to activate that B6, you need to have sufficient zinc B2 magnesium to activate B6 so the body can get to use it - there could be a genetic issue whereby it may be difficult  for your body to activate the B6 and one may need to have the activated form of B6 which is p5p -- or your body problems/issue may have nothing to do with B6.

it is possible for a person to have good/high level of B6 in the blood and be B6 deficient.

if you have burning feet, bad sensations etc, there are other issues going on with your body it is beyond being a B6 issue.

if you are not taking B6 and have burning feet, you could have a B6 deficiency or not, you could have a high level of copper or other heavy metal, your detox pathways do not work properly, your methylation pathway does not work properly, you might have a problem with sulfur foods

burning in the feet/bad senstions could be from other problems, like you might have a high level of copper in the body which makes you deficient in molybdenum which is needed for sulfur, and eating sulfur/thiol foods may give you odd/bad sensations in the feet - if you have a problem, allergy or intolerance to sulphites or sulphur foods it means you are deficient in molybdenum due to high level of lead or/and copper. There could be a genetic problem in regard to your body using sulfur

you could have a genetic problem whereby you cannot activate folate in your body, blood tests might show high level of folate but that does not automatically mean your body is able to convert the folate into the format your body needs this does not mean you are folate toxic it might be you are folate deficient because your body cannot activate it or cannot activate enough of it - a defiency in a vitamin(s) or mineral(s) means things cannot work properly in the body and then ones detoxification system cannot work properly and heavy metals and toxins build up in the body

these are all complicated issues and leaving out certain foods does not fix the problem

a person could have problems with converting B12 or with using B12 in the body...there are different types of B12 and it depends on the genetic problem and where in the body the problem is as to which form of B12 one needs

here are links which give you some material to read and maybe it can help lead you in a direction where you may be able to get help to find out what is going on in your body and why and get help to fix things

here are some interesting links

http://www.holisticheal.com/media/downloads/john-doe-mpa-sample.pdf

http://www.mthfrsupport.com/

http://www.rawlins.org/mthfr/mthfr.html

http://www.nwhealthcare.net/index.php?id=64

http://www.heartfixer.com/AMRI-Outcomes-Non-CV-Autism-Methyl%20Cycle.htm

https://www.facebook.com/pages/Mthfr-Support/301594793192098?sk=wall

http://mthfr.net/mthfr-a1298c-mutation-some-information-on-a1298c-mthfr-mutations/2011/11/30/

http://www.mindmeister.com/12694596/mthfr-related-health-problems

http://www.mindmeister.com/12721197?title=mthfr
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Avatar_f_tn
if you use a chelating agent/drug to remove heavy metals from the body, good minerals will also be removed from the body, and unless those good minerals are replaced you could end up in a lot of trouble if you end up deficient in good minerals... you only need to be deficient in one vitamin or one mineral for the body to get into a lot of trouble
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Avatar_f_tn
There is a well-known and documented coasting period after stopping B6 where symptoms continue to get worse, despite the blood levels actually slowly decreasing. I think it's dangerous to suggest to B6-toxic people that they might really be deficient. Presumably everyone will take all this input and do what they feel is best for their individual situation, keeping in mind that not everything you read on the internet (including this) is necessarily true.
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Avatar_f_tn
http://boards.straightdope.com/sdmb/archive/index.php/t-458399.html

There is a comment about coasting in there, and a reference...if you're interested. Coasting is just the phase right after you stop B6 where your symptoms either get no better or seem to get worse. My memory is that it last a few weeks, but I don't have time to look for the reference right now.
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Avatar_f_tn
HI
WHAT KIND OF TEA CAUSED YOUR SET BACK.  I LIVE ON ICE TEA YEAR ROUND. I USE LIPTON IT IS ORANGE PEKOE AND BLACK TEA LEAVES. LET ME KNOW PLEASE
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Avatar_f_tn
when people have complicated health issues it is not something they can fix themselves, they need to find a doctor who understands biochemistry and methylation, and knows what tests to do and how to interpret them and how to address the health issues.

Blood can show high levels of magnesium or B6 or folate and it does not automatically mean that the cell/tissue levels of those are good or high. this is why a person needs professional help. Cell/tissue levels can be very different to blood levels.

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Avatar_f_tn
Just bought a couple of bottes of Organic Vegetable Juice.
I was unaware that it contains 20% B6. My question is, do you
think it is okay to drink?  After all, it is not in pill form, but in the form
of drink. We probably have all consumed veggies and such with small
amounts of B6.....just want to know your thoughts.

Thank you.......hope everyone is doing better.
Let us hear from you!

Susan
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Avatar_f_tn
Sorry.....I meant to say BOTTLES, not BOTTES.
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Avatar_f_tn
Hehe, and I assume you meant to say it contains 20% of the daily requirement of B6, not that it's 20% B6, which might literally be enough to kill a horse! 20% should be OK, but I'd probably not buy it again.
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Avatar_f_tn
Oh wait, sorry, did you mean it was supplemented with 20% of the RDA of pyridoxine, or that it naturally contains 20% of the RDA without supplementation? The latter is better, IMHO.
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Avatar_f_tn
It only says.....20% B6 and doesn't mention anything about RDA. It is all made up  from the juices of vegetables. Is it safe to drink? After all, I do eat vegetables with B6 naturally occuring of course. Do you think it is okay?
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Avatar_f_tn
Sadly, every tea I've tried has caused my B6 pain to worsen. Some are immediate and some seem to cause pain 24 hours later. The worst offenders are white tea and green tea. They cause pain right away.

Black tea seems to be tolerated in small amounts, but if I drink more than several cups it builds up in my system and I'm in pain for several days afterwards. Instant iced tea is the same.

Herbal teas are the least offensive. Peppermint still causes me pain. So far, the only one I can tolerate in moderate amounts is Chamomile.
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Avatar_f_tn
you might have a problem with phenols and maybe salicylates - the detoxification pathways need to work properly otherwise when you eat/consume various and/or certain foods/things it causes pain and/or various symptoms.

why would a person have problems with detoxification and liver - deficiencies of vitamin(s) and/or mineral(s) and if there is a high level of a heavy metal(s)

also the methylation pathways in the body need to function properly otherwise there will problem(s) - any deficiency of a nutrient (or a heavy metal burden) will cause a problem whereby things will not be able to function properly in the body


http://www.****.com.au/phenols1.htm

http://www.ehow.com/list_7261723_list-foods-high-phenols.html

Dr Amy Yasko - a must read, even though her focus is on autism - this applies to any/everyone

http://www.google.com.au/url?sa=t&rct=j&q=genetic%20bypass%20by%20dr%20amy%20yasko&source=web&cd=6&ved=0CEwQFjAF&url=http%3A%2F%2Fwww.holisticheal.com%2Fmedia%2Fdownloads%2Fjohn-doe-mpa-sample.pdf&ei=QfATT8vpLYiaiQfLntVD&usg=AFQjCNGNYG8zY5n77vuWPc8f6NnzLH6lUg&cad=rja


http://www.vsan.org/rok-az/methylation/Genetic_Analysis_Report_summary_sheet_1.pdf
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Avatar_f_tn
for whatever reason a URL did not come out properly in the previous posting

http://www.allnaturaladvantage.com.au/phenols1.htm

if it comes up as:

http://www.****.com.au/phenols1.htm

then where it shows as:

****

replace with:

allnaturaladvantage

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Avatar_f_tn
I haven't posted in awhile, but do check updates. I've been off of B6 for 7 months now. I saw some improvement in the tingling after 4 months, but then it got worse in August. My neurologist told me to increase my B12 and that did help. I had a few other symptoms, but the tingling has always been the worst symptom. It lessened again and I was very hopeful, but now for the past 3 weeks it has almost been as bad as when I was first diagnosed. The only thing I can figure out is that I had soy milk which I found out later has B6 in it.  I was so mad at myself for drinking it (more than once) but you can't go back and change things.  My integrative doctor thinks I should look into biofeedback to help get the nerves calmed down. I was wondering if anyone has tried that and if so, was it successful?  
Thanks to all.
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Avatar_f_tn
That's actually interesting. When I was first diagnosed, I was on the estrogen patch, and had been increasing the dose to control the panicky feeling I had (which, in retrospect, was from B6, and not from a lack of estrogen!). The neuro found some studies showing neuro symptoms from estrogen. I immediately reduced the dose dramatically, at the same time stopping B6, and the symptoms vastly reduced. Soy has an estrogen mimic, or somehow acts like estrogen in the body. And my symptoms, during recovery, always got worse before my period.

My conclusion, though a bit murky, is that B6 toxicity symptoms definitely are affected by estrogen levels. So it could be the B6 in the soy milk, or the soy itself, that caused your problems. But whichever it is, don't lose heart. This takes time, and at worst you set yourself back a bit with the soy.

Were you tested for B12 deficiency? I've taken B12 off and on during recovery, and to be honest didn't really notice much effect. Maybe a little. And my tingling continued off and one for at least a year. Each time I felt a tingle I convinced myself it was nerves waking up, and in the end, it was. The tingling went away completely...eventually.

Sorry, I didnt' address your actual biofeedback question. I didn't try it, and so know nothing - however, I'm not sure it makes a lot of sense to me. This neuropathy from B6 toxicity is peripheral, which sort of by nature means it's not controlled centrally (brain) and so I wouldn't think would be amenable to biofeedback. But honestly I don't know how biofeedback really works, so don't take my word for this. ;-)

Hang in there. This recovery definitely has ups and downs, some months worse than others. Are you sure it's really as bad as when you first were diagnosed? Sometimes it's easy to forget the little extra symptoms that you used to have, but no longer have.

Good luck!
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You could be right about the estrogen effect in soy.  I have read that in several articles. I havent had to deal with estrogen since I'm past menopause. On the soy milk box it says 10% B6 so I assume that means 10% of the daily recommended dosage, but whatever I do know my symptoms got worse. Yes I was tested for B12...it was within the normal range, but my neuro wanted it higher. He says he likes his neuropathy patients with a little higher levels.  He says he's found that his patients say that helps with the tingling.  I know when I increased it last summer that it did lesson the tingling. I'm still on that dose, but it has not helped this time...probably because I consumed all that B6 in the soy milk.  I know it will get better again but  this time the tingling is pretty much all over where before it was mostly legs and back. He wanted to give me medication before to mask the tingling, but I declined since the medication has so many side effects, so I am just trying to stick it out.  As for the biofeedback, I'll probably call his nurse and ask his opinion on that.
Thanks for your thoughts on all this!
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MY DOCTOR JUST PUT ME ON GABAPENTIN 600MG.  I TOLD ME TO TAKE HALF AT BEDTIME UNTIL THE WEEKEND, AND THEN TRY HALF IN THE MORINIG. THIS IS A SEIZURE MED.  HE SAID IT WILL HELP WITH THE PAIN, AND POSSIBLY HELP WITH THE SYMPTOMS. I WAS ONLY DIAGNOSED IN MID NOVEMBER AS B6 TOXIC.  SO BY WHAT YOU HAVE ALL POSTED I HAVE A MIGHTY LONG ROAD AHEAD OF ME. MY DOCTOR SAID IT WILL TAKE A WEEK OR TWO TO KNOW IF THIS IS WORKING.  I WILL GIVE AN UPDATE IN ABOUT A WEEK. LETS ALL SAY A PRAYER AND KEEP OUR FINGERS CROSSED. EVEN THOUGH CROSSING OUR FINGERS IS NOT THE EASIEST THING TO DO. LOL. KEEP A SENSE OF HUMOR YOU KNOW.  ONLY WE CAN LAUGH AT OURSELVES.

SUSANA
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I HAVE BEEN TAKING THE GABAPENTIN SINCE TUESDAY, 4 DAYS SO FAR. THIS IS A REAL STONG MED WITH ME, SO ON MY DOCTORS ADVISE I HAVE ONLY USED IT AT NIGHT UNTIL I GET USE TO IT.  IT HAS HELPED WITH  PAIN SO FAR. BUT THE DOWNSIDE IS IT INTENSIFIES THE LACK OF BALANCE AND COORDINATION. PHARMACIST SAID THE SAME THINGS AND THAT IT IS USED TO REVERSE NERVE DAMAGE. LAST NIGHT WHILE IN BED I HAD TWITCHING IN ONE FOREARM, AND ON ONE SIDE UNDER MY ARM PIT AREA. I AM HOPEFUL THAT THIS IS A GOOD SIGN. YOU WILL HERE FROM ME LATER.
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Thanks for the links. I'm checking them out now and will consider this.
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it is not that rare for a person to have MTHFR means your body cannot convert folate properly and this can also give neuorological symptoms in some people - folate is a B vitamin...

http://www.heartfixer.com/AMRI-Nutrigenomics.htm#MTHFR:%C2%A0%205,10-Methylenetetrahydrofolate%20Reductase%20%28%C3%9E%205-Methyl-Folate%29

https://www.facebook.com/pages/Dr-Ben-Lynch/204838199545021

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if you are deficient in certain vitamins you will not have enough stomach acid, if you cannot properly digest your food it will make you more vitamin mineral deficient - reflux is often caused by one not having enough stomach acid and then taking medication like anti acids makes things worse...

http://www.nutritional-healing.com.au/content/articles-content.php?heading=Stomach+acid+deficiency+%28Hypochlorhydria%29

-----------

ESTROGEN DOMINANCE SYNDROME
PMS/PMT/Mood swings
Insomnia
depression/anxiety
heavy or painful periods
low libido
Creates mineral imbalance of
zinc deficiency and magnesium deficiency and copper excess

---------------

just because a blood test shows good levels of a vitamin or mineral it does not automatically mean it is getting into the cells/tissues. None of them work in isolation. Some vitamins need to be activated or converted before the body can use them.

in the case of MTHFR a blood test might show a high or a good level of folate in the blood it does not automatically mean that the body is able to convert what it needs, if there is trouble with converting, a blood test might show high levels but the body might be deficient. B6 is the same, the body needs to covert it before the body can use it. B2 is the same, the body needs to convert it before it can be used. Blood tests do not show if the nutritient is getting into the cells/tissues the blood test only shows what is in the blood (it still has to get into the cells). Some might be getting in but not enough. Cannot necessarily assume there is no deficiency because a blood test shows a good or a high level.

B12 blood test, might show as very low but one is on a good diet and it seems there is no reason for having a low reading, there might be a problem in the methylation cycle whereby one is using up B12 faster than the body can provide it. Or blood test might show a very high level it might be that the body is having trouble converting and using it.

B12 is not as simple as just taking B12, there are different types of B12 injections and pills and depending on what problems one has in the methylation cycle will determine which B12 is best for one.

Blood test cannot always be taken at face value.

check out MTHFR as well.

-------------------

if you are desperate to try to find out what is wrong, want to find some answers:

http://www.holisticheal.com/comprehensive-methylation-panel-with-methylation-pathway-analysis.html

the link above when you have the website page on the screen then click on DESCRIPTION to see what it is about then click on REVIEW

-------------------

http://www.mthfrsupport.com/

http://www.rawlins.org/mthfr/mthfr.html

http://www.nwhealthcare.net/index.php?id=64

http://mthfr.net/mthfr-a1298c-mutation-some-information-on-a1298c-mthfr-mutations/2011/11/30/

http://www.mindmeister.com/12694596/mthfr-related-health-problems

---------

if you search long enough you will find the answers
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DOES ANYONE KNOW WHAT AN EMG TEST IS? HAS ANYBODY HAD ONE, I HAVE BEEN TOLD THEY ARE VERY PAINFUL, AND THEY WILL ONLY TELL YOU THERE WILL BE RECOVERY OR NOT BUT WILL GIVE KNOW IDEA OF HOW MUCH RECOVERY OR HOW LONG. HOPE SOMEONE OUT THERE HAS THE ANSWERS I NEED BECAUSE MY NEURO WANTS TO DO THIS, BUT MY INSURANCE WILL NOT COVER THE TEST. SO IM NOT SURE IF ITS WORTH IT, ONLY BECAUSE IT WONT TELL ME HOW MUCH RECOVERY I MAY OR MAY NOT HAVE.
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Hi! It is a nerve conduction test that measures how well and how fast the nerves can send electrical signals.
I had one done on me and it did not hurt that much....at least I didn't think so, but I was used to having needles stuck in me as I routinely had accupuncture on a weekly basis.
These tests are done to find the diseases that damage the muscle tissues and nerves. Mine was negative. I can't say whether or not you should have it done, if only for peace of mine.
Hope this was of some help.
Susan
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IPM from Poland , sorry for my Engl.

It's 3 years since i started taking a drug/ supplement called MAGNE B6 (Sanofi Aventis company), its 50 mg magnesium with 5 mg b6 in every tablet. I have been taking 8-10 tablets a day for 3 years, and every day i felt worse and worse and didnt know what was happening with me, what was the cause of my horrible symptoms. Until know, so thank god and bless USA for sites like this, theres no info in PL sites about toxicity of vitamin b6. I took for 3 years not so big doses (about 50 mg) of b6.

My symptoms are:
horrible brain fog, whole day somnolence, total lack of emotions ( lack of stress too), lack of short and long term memory, tingling and itching of skin, pallor, tiredness, twitching muscles even non stop eyelid twitching, palpitations, low blood pressure (especially diastolic , for example 110/50 or 115/45). I cant exercise, my muscles are weak and sore, Im non stop dehydrated- I have to drink water all the time, ive lost weight (especially muscles, not fat), dezorientation in some situations in live, i've lost communicativeness with people. Thin hair, bizarre dry skin, itching in pins and needles type skin while going to bed, vivid ugly dreams and so on and so on. Its horrible!
Can please someone tell me how long should it take do detoxify from this S.H.I.T stuff???
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Anyone have Geographic Tongue now?  
Yes, this may be another symptom...
Jen
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the article below (URL/link) is about the methylation pathway. Dr Amy Yasko's work covers the same topic and a search on the internet will find her various articles etc.

Methylation is to do with the brain, liver, detoxification and clearing out heavy metals.

http://www.heartfixer.com/AMRI-Nutrigenomics.htm#MTHFR:%C2%A0%205,10-Methylenetetrahydrofolate%20Reductase%20%28%C3%9E%205-Methyl-Folate%29

Everyone has genetic mutations, polymorphisms (SNPs). It depends on what SPNs you have as to how it can and could affect your health.

If one has a problem with CBS (in the methylation pathway) then B6 can be a problem and p5p is less of a problem.

If you have a problem with CBS then your problem is much more than taking some B6 and getting bad symptoms which wont go away. The solution would be to aid/help/bypass the problems in the CBS.

CBS (Cystathione Beta Synthase)

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should have been more clear - B6 (meaning B6 as a supplement and p5p as a supplement) B6 in food is not a problem - in regard to having a problem with CBS (Cystathione Beta Synthase) in the methylation pathway.
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I was told I had geographic tongue a little over a year ago.  I never had it before.  I had wondered if the B6 toxicity had anything to do with it, but of course no one knew.  Have you found out anything specific?
Thanks.
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Hello all.  
My name is Keith.  I'm 39 years old and consider myself to be in great health.  I workout 4-5 times a week with both weights and cardio. I've been reading this forum periodically for about 4 months now.  I've been wanting to share my story for some time so here it goes.  

I've been on a liquid multi-vitamin for a few years.  It contained about 75mg of b-6.  Took it regularly and never had any issues.  Early last year, I started having trouble with weakness in my right arm.  It got bad enough for me to go get checked out.   The neurologist that examined me told me right off that he couldn't rule out ALS and wanted me to get an MRI.  Thank GOD the images showed a herniated disk in my neck.  I had surgery and went to follow-up visits with my surgeon.  His suggestion for faster nerve healing was to triple up on my complex b, c, fish oil, and zinc.  Keep in mind that this is in addition to my multi-vitamin.  I noticed after a couple weeks that my walk was weird.  Didn't think much of it and chalked it up to my nerve healing (nothing in the neck related to legs).  The fusion in my neck took well and my strength in my right arm improved dramatically.  I began to start working out again.  My weird walk was intermittent. Still didn't think anything of it.  One day I noticed the left side of my neck started to burn.  I thought it was some complication from the fusion in my neck.  Went to the neurologist and got another MRI.  Everything looked good in the image but the neurologist only offered physical therapy as a suggestion to remedy the problem.

Burning was intermittent and had me worried.   As I tried not worry my feet began to burn and tingle as well as my hands.  Started doing research online and concluded that I may have had MS.  I had my eyes checked for optical neuritis and that came back negative. I then started thinking about all the vitamin supplements that I had been taking and looked on the net for the side effects of excess vitamin supplements.  By this time I had random muscle twitching, brain fog, and blurry vision.  All the symptoms that I was experiencing resembled b6 toxicity.  I tallied up my total b6 consumption per day and it came to about 450mg. I had my regular doctor check my levels and it was up to 132.  He initially said that he had never heard of b6 causing any of the symptoms that I was having but he later did some research and let me know that I did a good job of self-diagnosing my self.  I immediately stopped the all of the supplements.  I told my neurologist and he totally dismissed it.  He never acknowledged that b6 toxicity was at least plausible.  He did say that based off my initial MRI he couldn't rule out MS but didn't see any lesions on the image that would confirm it.

From periodic searches I stumbled across this forum.  Thank GOD!!  I've been able to find some solace by seeing that others have experienced the same symptoms that I have.  

I've been off my vitamin supplements since October last year.  To date my numbness and tingling have subsided.  Was feeling like things were better until a couple of weeks ago.  I only feel an occasional muscle twitch but now other random symptoms have set in.  I've had dizziness, ears popping and ringing, my walk is still off (I think its called sensory ataxia), random muscle cramps, back pain, anxiety and depression.  I think that's it for now.  Just like everyone else on this forum, I have my good days and my bad.  I have placed this in GOD'S hands but find myself really down some days.  I just wanted to share my story to let everyone know that there is yet another b6 toxicity case and the prayer is that it results in a good recovery.  I'll pray for everyone on this forum for good recovery and that we can get the message out and make it understood that excessive b6 is a problem that shouldn't be ignored.

Kind Regards,
Keith J>
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I recently took a short course of a multivitamin and a B-complex supplement for 10 days. Total B6 supplementation was 7mg/day. I stopped taking them after I awoke one night with pins & needles type feelings in my upper arms and chest. This sensation has become a burning type feeling, and also affects my lower legs. I do not get pins and needles in my hands or feet, but they do seem go vacillate between cold and hot. The burning feeling in my arms is not constant, but when I lie down to sleep or rest it starts up and becomes a big nuisance and I cannot get any sleep. My family doc has shot down the notion that this could be due to Vitamin b6 toxicity. Those of you who are so familiar with this ailment...does my situation sound like it fits a b6 toxicity profile? I have convinced my doctor to at least check my b6 levels, but have not gotten results yet.
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Seems like a very short period and low dosage for any adverse effects to happen but you never know.  Definitely get the results of your test.  It took about a 3 weeks for my level to go from 132 to 29.  It goes down fairly quick after you cease your dosage but it seems that the nerve damage just takes time to heal.
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YES!! change doctors - he's an idiot for trusting the Merck manual (and because he didn't test your b6 level did he?). People on this forum report getting problems with as little as 2mg a day. The european levels for supplements are set much lower - there's a stack of debate on it if your doctor cares to read up.
There is something wrong presumably with the way your body is unable to process the active B6 from the ingested vitamin supplement. This gums up the works and leads to the sympotms essentially the SAME as b6 defficiency ( presumably because the receptors are all plugged up ).
Get your level done, then consider suing the supplement company because this is the only way we are going to change things.
B6 needs all sorts of cofactors to activate - thiamin, B12 folate and riboflavin among them.These are all water soluble and so they wash out faster than B6 - they are more fragile than b6 so if you cook all your food you get disproportionately more b6.
plus if your were feeling lousy in the first place and not know why and so took supplement to fix this - well things are not healthy to start with are they and more prone to 'break'.
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Sanofi Aventis - that is a S H I T company all right - i called them and tehy were completely uninterested in thefact their bad formulation gave me a problem. Most of their vitamins are overloaded with B6 in proportion to the other B's and they do not use p5p.

My suspicion is that you take as long to recover as you did to get sick - given that one is literally building up what was torn down using the same metabolic pathways in reverse more or less; at least that is how it worked for me.

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Huh, weird. I used to take a daily multivitamin for years and never had any problems. Why do you think that is? The B-Complex I took was time-released, and only had 5mg in it. I am seeing my doctor tomorrow, and he is reluctant to send me to a neurologist, because he thinks this is all "stress and anxiety". Should I push hard to see a neurologist or get any other specific tests?
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B2

Deficiency may cause or be associated with:

Geographic Tongue
alopecia
anaemia
blood shot eyes
blurred vision
cataracts
digestive disturbance
sore tongue
sore throat
and the list goes on...

B2 functions facilitated:

alleviates eye fatigue, activates vitamin B6 and folate, coenzyme in respiratory enzyme system, constituent of flavoproteins i.e. important for Krebs cycle function.... myelin sheath maintenance, redox and respiratory enzymes.....

Enzyme systems involved:

co-enzyme forms are FAD, FMN

FAD is involved in most oxidase enzymes - axanthine oxidase, glycine oxidase

FMN is involved in the cytochrome enzyme system

Glutathione reductase


Drug/nutrient interactions interfere in the conversion of B2 to its active form:
Tricyclic antidepressants.

interfere with gut synthesis of the vitamin B2:
antibiotics.

increase excretion of the vitamin B2:
phenothiazines

decrease B2 vitamin status:
oral contraceptive

"The Nutrient Bible" eighth edition by Henry Osiecki.
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B2 deficiency

sore red lips
sore tongue
sore mouth
cracks and sores on lips
geographic tongue
hair loss
sore mouth
dry skin.......

Visual Textbook of Nutritional Medicine by Dr Igor Tabrizian

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the body needs to convert B2 before the body can use it

the body needs to convert B6 before the body can use it

the body needs to convert folate/B9 before the body can use it

the body needs to convert B12 before the body can use it


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One other comment about the 7mg per day in that multivitamin - not all vitamins actually contain what they say they do. It could have more, or less, and the time release is a little suspicious. You could also be getting B6 from other (unnatural) sources, such as vitamin drinks, energy/protein bars, breakfast cereal, etc. That said, if 7mg per day is the only supplementation of B6 you're really getting, you might want to not rule out other potential causes for your symptoms. I'm not saying it couldn't be B6 - just that it's a little less obviously B6 than many on this list.
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Ninamagic, thanks for the input. Why do you think that the time release is suspicious? Also, I had been drinking Ensure during that period, but that would only add another 1-2 mg of B6 to the equation. So max supplement B6 if I believe labels was 8-9 mg per day for 10 days.
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