I do feel worse - more tingling and extra sensitive - when I have a cold or the flu. I have been explaining it away as "my skin and muscles are just more sensitive, in general, when I'm sick so all symptoms are worsened."
I took 6 months for high-dose vitamin b3 1g 1.5g, then I added b6 high dose for 1 month and I began to feel itchy feet ... I've stop it, but the itching does not pass .. is tremendous, what can I do? there any doctor who understands peripheral neuropathy?
Worse, gfragile. I'm still here. It's been 7 years since my pain started and I'm not better. I've seen 22 doctors now, have no official diagnosis and no answers. And still have a lot of pain and setbacks. I hope someone else has better advice.
boots, I sent you a note and two messages but they're not showing up in my "Sent" box. I think you might have accidentally clicked the word "Block" next to my username somewhere in your browser and so my messages are not coming through to you. I don't know how you can unblock my username.
As to whether toxicity symptoms come back when you get a cold or the flu - Yes! They still do, slightly, years and years later. But at this point it's almost unnoticeable. For the first few years it was a huge difference, and worrisome. But each time it was a little less.
I occasionally come back here to see how things are going, and give an update and hopefully some hope. I had B6 toxicity something like 10 years ago now after taking 50mg per day for a year or so. I had virtually every symptom people have mentioned, though no actual pain until I stopped B6. To make a long story short, it's a VERY slow road to recovery, but it does happen. I would say that 98% of my symptoms are gone, and it's no longer a part of my life. However, I too had a very scary and depressing few years, wondering every day if my own diagnosis had perhaps been completely wrong and something else was terribly wrong. However, I did have noticeable changes within a few weeks of stopping B6 - not necessarily good changes, but definite changes. If you've stopped B6 completely, and haven't noticed anything different after a month or two (for example, new pins and needles and stabbing pains are...GOOD), then you might want to just rule out that something else could be affecting you.
My mom got B6 toxicity from a multivitamin about 2 years ago and slowly recovered over the course of ~1 year. She still had mild symptoms after recovering, but overall was probably around 95% improved. A couple of weeks ago her symptoms worsened again out of nowhere - not to the level that they were when she was first toxic, but she says they've definitely worsened significantly. She hasn't taken a B6 supplement or multivitamin since she was first diagnosed , and carefully watches her diet to avoid anything fortified with vitamins. Her diet has stayed consistent and she doesn't appear to have symptoms when eating natural forms of B6. She did start taking a B12 supplement around the time her symptoms worsened. We're thinking that it's possible that the B12 has traces of B6 in it since the company makes B6 supplements as well. Has anyone else experienced or heard of someone who nas experienced a random flare up of symptoms even after some recovering has occurred and without taking B6 again? Any feedback is appreciated!
I took vitamin B6 25mg supplement for 3 weeks and ended up having symptoms of B6 toxicity. I was tested for it and my level was 90 which was about 4 times higher than the upper range. Prior to taking the B6 supplement, I was very healthy, working out 4 to 5 days a week, working a professional job, dating, and basically living a normal productive healthy life.
About 3 months after stopping the B6, I was diagnosed with 2 (yes not 1, but 2) autoimmune neuromuscular diseases (Stiff Person Syndromre and LEMS) based on several elevated auto-antibody tests with the Mayo Clinic. My neurologist also suspects Brain Stem Encephalitis or Hashimotos Encephalopathy as part of my disease. My symptoms include coordination and balance problems, reflex problems, ataxia, speech problems, rapid muscle loss, tissue damage, extreme muscle spams, insomnia, brain stem tremors, neuropahthy, cognitive decline, brain fog, memory loss, brain shocks, derealization, panic attacks, constant shortness of breath, vision loss, and about 100 other debilitating symptoms. I can no longer work, date, and barely function at all and prior to this I was the epitome of athleticism and health.
Again, I never had a problem or one symptom like this a day in my life prior to starting the B6 and now I am disabled with several autoimmune disease and my B6 still has not come down after over 2 and half years. It is down to 54 which is better than 90, but still a toxic level. I am 100% certain that the B6 had poisoned me and kicked off some very serious autoimmune diseases. I have been gluten free and dairy free for many months with no success. i have tried some autoimmune meds and IVIG to slow the rapid progression of my disease and nothing has worked at all. I've had to stop both the IVIG and autoimmune meds due to adverse reactions and very severe side effects.
This B6 toxicity stuff is very sad and I can not believe there is not a greater concern and awareness for how damaging it can be. I do believe most manufactures are aware of the adverse effects at this point,but refuse to take their products off the shelf because of profit and greed. At the least there should be a big disclaimer on every supplement containing B6 of the possible risk of toxicity. Is that really a lot to ask for? I went from a guy who was running 30 miles a week to someone who can barely walk and breath. LITERALLY can hardly walk and breath from B6 induced toxicity and the neurological autoimmune diseases that were triggered by it.
I started taking b-100 complex under the recommendation of my migraine doctor four times a day for a total of 400mgs a day in March. Two weeks in I had the worst migraine of my life with pain in my right eye ever since. April 22nd I woke in the night with extreme vertigo and was told,I had vestibular neuritis and put on antivirals yet the vertigo is much worse a month in. I also started getting red patches on my face, worse migraines, leg and hand swelling, body aches and the dizziness has not stopped, also problems with my memory. I have said to drs all along that I felt awful after taking the vitamin b complex, but not one has suggested toxicity. My husband started researching if it a possibility and we were led here. I was always told don't worry it's water soluble so you will have no side effects. I think it is to coincidental that all this happened after starting 400mgs a day. I have been sleeping in a recliner for a month because I can't put my head forward or back without the vertigo symptoms. Do I have any hope of this going away if this is the problem? Any advice would be appreciated. Thanks in advance.
Um yes. Stop the B100 immediately. That's way too much even at one pill per day, but 4? Yikes! If you feel at least a little better after 2 weeks, then you've got your culprit. There are a lot of meds for migraines, but I've never personally heard of overdosing on B6 as a treatment for that. I'd find another migraine doctor too, personally.
If one takes B6 and then all hell breaks loose in the body and the problems don't go away when one stops the B6 need to investigate if there is a bacterial issue, chronic bacterial infection. Example doing a GI stool testing DNA and culture to see if there is an imbalance in the gut flora, is there a high level of strep, is there helicobater pylori, parasites. H.Pylori and parasites can be very difficult to detect, one can do testing, if they don't show it does not automatically mean one does not have them. Sometimes it can time time and numerous tests before things show. H.Pylori and parasites feed on ones nutrients and give one deficiencies, body can't properly use nutrients. Taking supplements can also feed the H.Pylori, bacteria, parasites...
P5P is the activated form of B6 - B6/p5p same thing.
This is from an article by Dr Yasko: "Chronic bacterial infection and its effects on tryptophan breakdown are part of the reason why I suggest only low levels of P5P for individuals with chronic bacterial issues and CBS up regulations. P5P also helps to push the CBS reaction as well as to aid in the conversion of kynurenic to quinolinic The kynurenic that is generated via the breakdown of tryptophan by bacterial infection is calming; however P5P helps to convert it to quinolinic which is excitatory. ........While kynurenic acid is calming for neurotransmitters, the product that kynurenines are converted to by B6 is quinolinic acid. Quinolinic acid is an excitotoxin. So if you have high kynurenine and add B6 you can generate quinolinic acid which acts as an excitotoxin and can aggravate the nervous system."
If one has Helicobater Pylori it is a bacteria and is classified as a class 1 carcinogen.
"Vitamin B6 Is Required for Full Motility and Virulence in Helicobacter pylori"
A bit of info on H.Pylori:
another snippet of info from Dr Yasko, "Migraines can be caused by hormone and/or serotonin imbalances and recall that serotonin imbalances can be related to chronic bacterial issues. So this gets us back to a need for a full CPR if other suggestions are not enough of a help. Also lack of carnitine (often secondary to H.pylori) can be sufficient to cause migraines."
Strep (streptococcus) and H.Pylori produce hydrogen sulphide and this will create a high level of sulfite/sulfate in the body and this is toxic. H.Pylori also depletes one of nutrients and causes malabsorption. there are also other nasties that produce hydrogen sulphide and if you then add to this food that is high in thiols (garlic, cabbage, cauliflower etc) make the level of sulfite/sulfate even higher.
There are very few doctors/practitioners who have sufficient knowledge to help one with these types of problems, genetics also comes into it, ones genetics will determine ones susceptability to parasites, H.Pylori, and will determine the severity.
When one does blood testing, like B6, B12, magnesium, folate these nutrients might show as high in the blood but it does not automatically mean the nutrients are able to get into the cells.
There are good tests like Metametrix Organic acid test and Amino Acid test and this gives good info, but need to work with a practitioner who understand these things. I have done Metametrix GI stool test (DNA) and I did a GI stool test that is culture. I have also done Doctors Data hair test which I do every x number of months.
in 2009 I took some B6, it was horrific, I was B6 starved and taking it was like pouring petrol on a fire. It took me 3 years to find out about CBS and quinolinic acid and about 3 1/2 years to find out about H.Pylori... I do a B12 blood test and it shows as high, but I am B12 deficient there is a problem getting it into the cells... I have never done a B6 blood test, use vitamin B markers on functional testing.
To know B6 or other vitamin B nutrients, Organix comprehensive profile urine test (OATs) has vitamin B markers.
i took Emergencee supplement (1-2 packets) almost daily for about 2 years and about 4 months ago started experiencing cold hands and feet, tingling and needles all over body, burning skin,insomnia and anxiety.
I went for brain mri and neuro workup 2x, all clear for ms.
Turns out my b6 level was about 110, doctor said toxic level.
Be careful what you take! I stopped taking the supplement and my paresthesias are about 75% less, but skin redness and burning continue. Its gonna be a slow recovery :(
First off, I am 26 and I was diagnosed with ALS at 25 years old. But! I don't believe that I have ALS and I'll tell you why.
I've been doing a lot of research lately (after all, my life is at stake). I found that it is unheard of to have an ALS patient with extremely elevated B6 and/or B12 levels. I also found that B6 becomes toxic in large quantities. People with elevated levels develop sensory and/or motor neuropathy. Usually people have sensory problems and not motor problems, but they also have a normal B12 level. (I have very minimal tingling in fingers one in awhile. My symptoms are mainly motor problems) So, I believe my high B12 levels are negating the sensory neuropathy caused from the toxic B6 level. That would just leave me with motor problems that look like ALS. Real ALS mainly strikes 40 -70 year old people. Recently, younger people in their 20s are getting an ALS diagnosis. What else happened recently? I believe energy drinks were invented. So, my theory is: People with an unusual form of "ALS" at a young age actually are just suffering from Hypervitaminosis B or Pyridoxine Toxicity. B6 is a neurotoxin, but the body requires a small amount for some reason.
My B6 level: 358, Normal range: 20 - 125
My B12 level: >1500 (off the charts all 3 times), Normal range: 180 - 914
Recent B6 Test: 230, Still toxic but dropping. And, progression of my condition has slowed.
I found in several forums people with elevated B levels complained about dehydration and stress before symptoms occurred. I also complained of those things. So I do believe that stress holds onto B vitamins and since they are water soluble, the dehydration causes them to store. Hmmm... What causes dehydration, stress, an increase of B6 and B12, and is fairly new? Energy drinks!
I'd really like to chat with more people about this. Has anyone else had similar stories?
If a person has very high B12 blood level, it probably means there is a problem getting the B12 into the cells. The same applies to very high levels of folate in a blood test. Folate collects and the level gets higher and then there is a chance it can break down into glutamate. Need to have sufficient lithium in the body to help transport B12 and folate.
There is testing that can be done to check these things. Blood lithium test is good to see if there is a lithium deficiency. If one is lithium deficient then there will be problem with B12 and folate.
Certain blood tests are not very helpful. Ordinary blood test for B12 is not useful in that if the level is high it can mean deficiency due to there being a problem of getting it into the cells, same applies to ordinary folate blood test.
Organic Acid test - Metametrix (I have used this for myself), there are other companies, the test has vitamin B markers and is an excellent test whereas the regular blood tests can be misleading.
To know where one stands in regard to B12, a hair test (I use Doctors Data hair test for myself) shows cobalt which is a B12 marker and also shows lithium and other minerals and shows if any heavy metals are coming out and which ones. Need to be careful with reading lithium on a hair test, a high level could be dumping which means deficiency.
On an Organic Acid test the markers for B12 is methylmalonate and for folate is formiminoglutamate.
My blood B12 level is high and I don't have sufficient B12 in the body. My blood folate level is very high and I don't have sufficient folate in the body. My blood lithium test shows deficiency. Hair test shows cobalt as deficient and lithium as dumping.
Organic Acid test, B6 look at the level of Xanthurenate.
If something shows as high in a regular blood test it does not automatically mean it is getting into the cells, in some cases it means deficiency.
There are numerous reasons as to why there would be lithium, B12, folate, deficiencies, gut issues, malabsorption (chronic bacterial infections, strep, H.Pylori etc) and ones genetics, often it can be a combination of these. Nutrients do not work in isolation, if one has those deficiencies there will be other deficiencies. Need to address the causes.
Need appropriate tests, work with someone who understands these things and can interpret the tests. Difficult to find people who have sufficient knowledge of these things.
If one has bacterial infections (strep, prevotella, clostridia, H.Pylori etc) and one takes vitamin B6 or p5p this can make things a lot worse, if there is a genetic SNP CBS and bacterial infection and add in B6/p5p can make a bad situation worse.
I am 7 years past my initial B6 toxicity and am now back to my strong, healthy self. BUT, it was a slow process and for me it got worse before it got better. I think it took a good 2 to 3 years to fully recover from the weakness, pain, burning, anxiety, insomnia, tingling symptoms.
One thing I discovered is that you can get a very inexpensive genetic test to find out if you have mutations in your DNA that cause methylation problems: http://geneticgenie.org/methylation-analysis-example/
It cost 100 bucks to get the DNA testing done.
I have read almost all the posts here and im quite amazed by how similar most of the symptoms are with the symptoms that I have. The major health problems I have started little more then half a year ago but soms of the problems i have going back to when i was 18, now im 32.
- Fast heart rate with skipping heart beats. I can feel my hearthbeat when sitting or laying in bed.
- It does not matter how I sit, after awhile I get this feeling in my legs that they are "sleeping". Scary thing is that I can put a needle in my leg all the way to the bone without feeling any pain. Same for the arm. I have only done this once don't worry. :)
- Pressure inside my head and a high pitch sound in my left ear.
- Brain fog. The feeling u are in some sort of dream. Here in Holland they call it De-reality feeling. Its Dificuly to focus, for example reading on the phone or computer.
- More difficult to breath and irritated and dry throat and nasal passage.
- Dry painful eyes and me too have those floating black spots, especially when looking at a white wall or sky.
I started to find out about the B6 when I was at the lung specialist about the breathing problems. After I had the blood test done and called for the results they said if I take B6 supplements and yes I did. I stopped all the supplements from that point.
Few weeks later I called back and asked if they could send me the lab results. It turns out my B6 level was at 500nmol/l. That's 83 ng/ml. This was almost 3 months ago.
I am planning on going back to the doctor and ask if I can have it tested again to see of the level has dropped.
I have the feeling I am getting better with every day that passes but some days are horrible. I just want to go to bed and hope its gone when i wake up. Problem is that when u wake up you feel even more horrible.
hi everyone! It really helps when you all put in what has helped you! I feel I am getting better but some days I fell helpless again. I have avoided foods high in b6 and I feel that helps temporarily! However, I don't think that gets to the root of the problem which is being able to metabolize b6! I have read that magnesium and zinc are important for this to happen. Also when I have a glass of wine I notice I have less tingling and night leg cramps. So I have started to take enzymes by neo-life again with each meal. I think this might help to metabolize any b6 floating around in my system. I hope this is helpful, it would be wonderful to find out what really is the key! Best to everyone! from missmilllie
I was diagnosed with MTHFR over a year ago. I've seen two MTHFR specialists since and have been on over-the-counter medications and vitamins to help my body methylate as it should. My constant tingling pain has not decreased much. I still have the pain that I have always attributed B6 toxicity. It's been over 6 years of constant pain for me with no diagnosis. I just know that if I avoid foods and supplements with B6, I'm not in as much pain. I've also discovered that preservatives like sodium benzoate and food colors like Red 40 and Yellow 5 cause me a lot of additional tingling and pain.
I'm new here and have been reading the posts (which are great by the way)
Burning feet on and off
Sometimes burning fingers
Tingling all over the body at times
Sharp stabbing pains in feet and hands sometimes
Today I had burning for a short while around my knees for the first time
Blood tests all normal - ANA, etc. Except for B6 - range 13-27, came back at 50
Have had Nerve conduction study - Large fibres normal.
Was taking multi-vitamins last year and on and off this year. Looking back I loaded up on natural B6 and didn't need the supplements - copious amounts of salmon, spinach, bananas, brown rice and chick peas etc that I understand are high in B6.
Haven't had an MRI yet...
Does this sound like B6 toxicity or is the value too low?
New to this thread also, I was diagnosed quickly I only took 1 b-100 pill then switched to b-50 for 7 days during those 7 days I experienced intense itch and crawling in my legs with cramping in my leg muscles. My Dr sent me to an neurologist, MRI was clear so she tested my b6 I am 98.9 (range 20-120) so normal range but high end. I have been off the vitamins 2 weeks and today I feel like me again, I still have tingly and some residual itch in my knee area, but the cramping has stopped for the most part and I feel better. I have had ups and downs emotionally and very nervous. I hope this will soon leave too. So I was on it a very short time but still had a reaction...Also my liver enzymes increased during that week, they are now back to normal range...B6 is toxic,...I am not completely better but feel like I will get there. So sorry for all the sad stories on here and the lack of acknowledgment in the medical community.
I am sorry you may be experiencing symptoms from B6 toxicity. Everyone is different but I can tell you that a B6 level of 50 can absolutely cause nerve damage as BOTH of my kids had erratic nerve symptoms in that range. We discovered their levels early because I was already very sick at a level of 87. My level dropped to 25 only five days after stopping the supplement and restricting my B6 intake from food. I had conflicting opinions from my two doctors as to which caused my problem--one thought it was from my B6-rich diet; one thought it was from my supplement. It was from the supplement.
For 2-1/2 years now I have been healing--slowly. Symptoms from my nerve damage were (and still are to some extent) CRAZY: lightening bolts in the body, buzzing and quivering, twitching, tinnitus, burning sensations, numbness, diffuse pain, pins and needles, overall discomfort, feeling flu-ish all day, every day, and the list goes on.
My toxic levels came from a 50+ multi-vitamin--NOT a mega-dose. Beware of ADDED B6 in foods and supplements. From my research, B6 that occurs naturally in foods is not a problem for most people.
Knowledge--even in the medical community--about B6 toxicity appears to be lacking. It seems patients are often misdiagnosed and are subsequently scheduled for many unnecessary, sometimes painful and costly tests done before testing for B6 levels. From the onset of nerve symptoms, B12-level testing seems to be the norm. If B6 testing were done along with the first blood tests, perhaps more patients would catch the diagnosis sooner and avoid additional debilitating effects of the nerve damage caused by B6 toxicity. In my case my B12 levels were tested at the onset of symptoms. Had they also tested for B6 I could have avoided a trip to the neurologist, two MRIs, and a very painful EMG test.
Healing is slow but it will come!! From my experience, I would recommend stopping any supplement with B6 and be sure to read the labels on any food products. I have found ADDED B6 (pyridoxine hydrochloride) in many different foods: margarine, cereal, frozen foods, and many, many more. Beware!
Although I never posted, this forum gave me hope that someday I would feel better; someday I would regain my life. Thank you to those who took the time to write because it gave me, and others like me, hope. It was time to pay it forward.
Hi Go Vegetarian,
I was wondering how long you took B6? I only took it for 10 days at most and only one high B 100 pill, the other 7 days were B50.. but that is when this all started with my legs.. My muscles cramp, the tingly feeling is lessening but I am concerned about the muscle pain. Did you have cramping?, it seems to be more in my left leg than my right, and my siactic nerve seems irritated, along with being nervous in general I thought it was going away the last two days and today again my muscles hurt...I cant' imagine if I had taken it longer...any advice would be greatly appreciated...is this going to go away? its been 2 weeks off all supplements (except iron, since I have low saturation my dr prescribed iron for a while)
I took my multi-vitamin for approximately six - eight months. It had only 150% of the RDA, or 2mg. I was misdiagnosed for four months and continued to worsen during that time. Of course, I was still taking the poison (supplement) that was making me so sick.
Remember that the supplement industry is not regulated so we cannot be absolutely certain what we are ingesting. I no longer trust ANY over-the-counter supplement. If I have a deficiency I seek a doctor's prescription and pick it up at the pharmacy.
Another reminder that supplemental B6 is also found in foods so read labels! And watch for it in those energy drinks as well. One of my kids became toxic having one energy drink per day with no other supplement of any kind.
I did not have muscle cramping but had (still have) a lot of muscle fasciculations (involuntary muscle twitching). My legs were affected the most and continue to have some of the same, but milder, symptoms.
I honestly don't know if cramping is connected to nerves, but I do know from personal experience that nerve damage caused by B6 toxicity can create all kinds of crazy symptoms. If you are taking any other medications, please also look into those as muscle cramping has been connected to other drugs. Cholesterol medication comes to mind...
I wish you the best in healing and am here for your support if you need it.
Thank you so much for your response, scared to death is my current state of mind! and I can use all the support I can get. I am currently off all supplements, my dr prescribed me an anti-inflammatory and a muscle relaxer which at this point I have not taken, I am scared to take anything. I found out that tonic water has quinine in it( an old muscle spasm med) so I am drinking small amounts to see if it helps. one day at a time I suppose, I am mad at myself for taking it, even for only a short time...but with my levels in "normal" range I still have symptoms. I am reading labels and trying to reduce the foods with high levels...it doesn't leave much to eat and I have already lost 30 pounds due to stress, testing for everything in the world and now dealing with this....thank you again, sending lots of light and love your way. oh, I have recently started a weekly massage to see if that will help eliminate the toxic b6 and help with the pain..I am trying all holistic ways at this point.....I would love to stay in touch, thanks again! :)
I can relate to being scared about the symptoms of B6 toxicity. I didn't even have the courage to read this forum. My daughter found it for me and she would read me the posts. Since healing is excruciatingly slow, I was afraid of not getting better; afraid of everything, including eating. I, too, lost a lot of weight. I got down to a dangerously low weight.
I mentioned that my primary care doctor suspected my high levels were from my B6-rich diet and my neurologist suspected it was from the supplement. I stopped both. It took a very long time and monthly B6 testing to convince me that my diet didn't raise my levels. B6 in its natural form is water soluble. I'm no expert, but I'd venture a guess that the supplements are synthetic and those of us on this forum cannot break it down. I did--and still do--check labels for B6 (pyridoxine hydrochloride) that has been added to foods. I had to change my habits since I found it in so many of the products I bought: the margarine I was loyal to; vegetarian convenience foods I enjoyed; high-protein and high-calorie smoothies; I even found it in frozen waffles.
As I posted before, my level was 87. My level dropped quickly, but the devastating effects of this toxin lingers. Except for a few forced walks outside, I stayed in the house for nearly one year. I feel like a new human being now, even though I still have symptoms. My sciatic nerves (both legs) were damaged the most. It started in my legs and will end there too!
You were on it for such a short time--I would think you would heal faster than I did, but I suspect any damage B6 may have caused to your nerves may take a considerable amount of time to repair themselves. It is just such a slow and agonizing process. Nothing I did helped speed my recovery. I began eating a better diet, because low B6 foods are not the healthiest. I did acupuncture but was too uncomfortable to continue. Laying down, sitting down, all of that was uncomfortable. I was only comfortable in a Jacuzzi (I couldn't feel the symptoms) and when I was asleep. Walking helped deal with it, although very little.
What was your level? What does your doctor say?
I was prescribed a muscle relaxer as well. I found that Xanax actually helped with my symptoms. It's not something I would really recommend anymore since the latest research on it, but it did help.
I am really sorry you have to go through this. I wanted to shout from the roof tops to tell people to watch out for this neurotoxin since it can be so destructive to our bodies. I was so miserable for so long, and it was totally preventable.
Write anytime. I'll keep checking. I'm here for you...
My level a week after stopping the B50 was 98.9 (20-125 normal per ARUP) so not abnormal but on the higher end .My legs also are what was affected. After my 1st dose of B100 I felt the itch in my left leg, I stopped it but then started again with just B50 about 4 days later,I was told all B's were water soluble and it would help with my burning mouth, a week on it I had the pain, cramping and crawling in both legs..Finally stopped all vitamins on Aug 21st. after my liver recieved was climbing. Dr. said it was from all my supplements. ( centrum, b-50, fish oil, calcium and D3) with the centrum and a probiotic I think I was taking around 65 mg a day. I do feel like you, I am afraid to eat, I read everything on the label, last night I felt pretty good then we went to eat and I had a bad night with my left leg this is the only residual scary symptom, I feel like there are bugs crawling under my upper leg thigh. This morning it was worse again. The muscle aches and cramping still come and go but not constant. At one time my legs felt like I had ran 30 miles and hip joints ached....I am very anxious about my level, but I am anxious in general. Dr prescribed me Klonipon for anxiety, a muscle relaxer, and anti inflammatory on Thursday which I am not a big propionate of prescription drugs but I do take .025 of klonipin (klonopin) when I feel like I can't cope. I am going to ask for another test in a week or so I am much like you, I need to see it is going down. The stories on this forum are frightening and in some ways I think can feed each others fears. I did take it only about 10-14 days but it was enough to cause my leg problems and over sensitive nervous system. I wrote the author of the book that suggested to take the B-100 for burning mouth geographic tongue, he needs to inform his readers B6 is toxic!! he replied and said he would, but I haven't received an email from his site yet. I can relate to you, I too just stay in the house when I am not at work( work is hell for me) I constantly worry and feel nervous. I guess I should be grateful I was not at a abnormal level and I stopped fairly soon...I just want my life back, no pain, no "bugs" and be able to eat and not stress about what is in it. Your story gives me hope, I am so grateful to have someone to talk too, most people including some family just dont think its from a Vitamin...I know it is.
I am going to try a muscle relaxer today for the first time....hoping I recieved take things that do more harm. I will stay in touch and again THANK YOU!!! :)
You are very welcome. I'm happy to help in any way I can. I can relate to so much of your life as a B6-toxicity victim. We are victims of this neurotoxin, aren't we?
Some members of my family also didn't believe me. It's absolutely cruel in my opinion. How is it that you can have a toxic level, have symptoms of nerve damage, the research--albeit little--is out there. There is still the misconception that one must take a mega-dose for years to cause damage. Not so. We, and this forum, should be proof enough of that.
Since my diagnosis in early 2011, my doctor's office diagnosed more than seven patients with B6 toxicity within a year. My guess is that this will continue to worsen with all the hype about B vitamins. It must also be due to the synthetic B6 that is currently in these supplements. I never had a problem with vitamins before this, so it isn't just because I can't break down B6--it must be a different chemical composition.
Because I was misdiagnosed, I sat in misery until one day I decided to get a massage. I was willing to try anything. The massage was awful, and the therapist triggered even more symptoms but this time in my face. I had endless twitching, to the point that my lip was actually moving up and down. This finally got my doctor to realize it was NOT a pinched nerve. That part was quite frustrating. I'm glad you were diagnosed early, because I do believe you will have a speedier recovery. The fact that you sometimes don't have any is a good sign. My symptoms never let up until I healed quite a bit. I would have periods of no symptoms, but it took a very long time to get there. Seems you may already be at that point.
I accepted a friend request but am not sure how that works!
I went for a 2 week check on my level..its been two weeks since I was 98.9..my doctor see my anxiety so he ordered me a test today...now I wait for 4 days to see if my level has dropped at all...I am like you, I need to see it is, not just feel it. I am also telling everyone I know about this...I am sure my Dr. will start checking this now also, so many people do not know what is wrong and their needs to be more awareness. I thought I was helping my body, in fact I was disabling it...I just hope and pray it will stop completely one day...today I have pins thoughout my body, I get them even in my tongue...those ones I pray to go away fast....I do feel better all in all, but again, I have my days of completel exhaustion and almost panic attacks...I am not sure how the friend thing works either, just though it may work in case we sent a private message rather than on the thread...either way I am good with, we are all in this together. unfortunately ...I will let you know my level when I get it back
You may turn out to be one of the lucky ones! If you are feeling some better already, you will recover much faster than a lot of us. As I said before, I didn't even feel a smidgen better for seven or eight months. I was off work for over a year.
The doctor I went to used conventional units to measure my B6 level. Normal range for them was 2.1 to 21.5-ish. I was 87 but it dropped very quickly. I had a test only five days after being diagnosed. I was relieved that I did not have so much of the toxin in my blood. It takes longer to get out of the tissues from my understanding. I still feared B6 in food, but turns out that was a bit irrational.
I accepted the friend request from you but nothing happened. Then I received a 'friend' email from medhelp from someone else! Maybe we can figure it out and go that route.
Symptoms are crazy and random. I didn't have the pins in the tongue, but my tongue did quiver. Horrible feeling either way. We are all similar and we are all different at the same time.
Your anxiety and fear is understandable. I was glad to have a diagnosis, and the hope to heal, but I was fearful and anxious too. Who knows how long it will take to feel better? how long it will take to heal? Life interrupted. That's an understatement!
I copied and pasted this into the 'friend' forum (I think) so look for it there as well. Just in case, I am also posting here.
I put a note on your profile...today is one of those bad days...did your muscles and joints ache? like a deep ache..its like a flu ache today :/ I have good days and then bam, back I go...is discourging honestly.
I posted on your profile but am unsure it went through. Please let me know!
I felt like I had the flu. All day, every day for a very long time. I don't get achy with the flu, and I don't know if that's related at all, but I didn't get the aches you described. I was very weak, fatigued, all over malaise.
I got it, thank you...I replied this morning on you profile.... my levels are way down 35.4 from 98.9 (20-125 normal) ...hair still thinning and still have muscle aches...but feel like some other symptoms may be fading (I hope)
I have been following this discussion for about 1 year after experiencing similar symptoms to many of you and discovering that my B6 levels were (slightly) higher than normal (140 nm/L; ref range 35-110 nm/L). It took about 3 months for my levels to decrease to 90 nm/L...interesting for a "water soluble" vitamin I think (?) Anyways, I was pretty convinced my symptoms were from the B6 "toxicity" at the time (especially after reading this forum), but they didn't seem to match what was published in the medical literature regarding vitamin B6 overload; for instance, my first noticeable symptom was body-wide muscle twitching (fasciculations) and second symptom was "pins and needles" (paresthesias) on my hands and feet. These symptoms don't correlate well with the severe sensory peripheral neuropathy cited as side effect of ingesting large doses of vitamin B6 in the medical literature. In other words, I just wasn't convinced it was B6.
Recently I revisited my list of symptoms that seem to re-occurr without provocation and include muscle twitching, "pins and needles" in feet/legs/hands, muscle cramping, burning, stabbing pains, muscle pains, tendon pains, brain fog, terrible anxiety and extraordinary fatigue and found that they are almost identical to adverse reactions experienced from fluoroquinolone antibiotics (these include Cipro, Levaquin, Avelox and other generics ending in -floxin).
I developed the neuropathic-like symptoms that I attributed to B6 toxicity shortly after finishing a course of Cipro (adverse events from this drug can apparently occur up to 6 months (!!) after taking a fluoroquinolone).
At this point, I'm questioning what is really causing my symptoms; a B6 toxicity or an adverse reaction from Cipro and I'd like to ask those on this forum if they might also be able to make a similar connection between these symptoms we are experiencing and recent use of a fluoroquinolone antibiotic.
If one has G6PD (glucose-6-phosphate dehydrogenase deficiency) there are certain drugs one should not take and fluoroquinolones is one of them.
One can have the genetics where one has G6PD - but one can also not have the genetics but have G6PD - if ones sulfate level gets too high it can impair the enzyme function - what would cause the sulfate level to get too high, e.g., if one has a bacterial infection that produces hydrogen sulphide (strep, helicobacter pylori)
Recently I noticed that the singular have I have been taking for more that 10 years causes tingling of the feet too! It is a side effect only the doctors knew about but now was sent with my last prescription! So I am off singular to see if I get better. I didn't think that there could be two contributing factors for this condition of tingling feet! About those drugs you were taking, my husband was on Levaquin a few years ago and had a stroke because it can cause Vasculitis and so can Singular, plus Peripheral Neuropathy! My feet are starting to hurt now and my legs ache and when I first get out of bed it is hard to walk on them. I hope this is a sign that my feet are waking up. So don't rule out that two things could be happening at once! Also I have tremor in my hands that I thought was caused from all the asthma meds I have taken like Albuterol inhalers. I had a man tell me the other day" listen to your body it never lies", so I am trying to listen and get well!
Don't know if this has been addressed but the symptoms of magnesium
deficiency are VERY similar to B6 toxicity.
Early signs of magnesium deficiency include loss of appetite, nausea, vomiting, fatigue, and weakness. As magnesium deficiency worsens, numbness, tingling, muscle contractions and cramps, seizures, personality changes, abnormal heart rhythms, and coronary spasms can occur [1,2].
If magnesium is severely deficient, the brain is particularly affected. Clouded thinking, confusion, disorientation, marked depression and even the terrifying hallucinations of delirium tremens are largely brought on by a lack of this nutrient and remedied when magnesium is given.
Magnesium deficiency may be a common factor associated with insulin resistance. Symptoms of MS that are also symptoms of magnesium deficiency include muscle spasms, weakness, twitching, muscle atrophy, an inability to control the bladder, nystagmus (rapid eye movements), hearing loss, and osteoporosis.
It used to be known that some
minerals (expecially magnesium) are needed to properly utilize some vitamins.
In the past, low magnesium has caused me a bad reaction to Cipro, high
levels of D3 and now B6.
Yes, taking magnesium now (after the toxicity) can help but it is most important to have a good base BEFORE supplementing with vitamins
and especially high doses.
Thank you for your reply. The G6PD (glucose-6-phosphate dehydrogenase deficiency) you mentioned, is this somehow connected to a methylation defect? I have read that genetic defects in the methyltetrahydrofolate reductase (MTHFR) pathway may indicate a persons inability to expel toxins from his or her body (and also inhibit the conversion of B vitamins from food and supplements into active forms the body can use...maybe contributing to accumulation and toxicity?). Maybe there is some connection suggesting an issue that stems from this defect?
I know that there has been much discussion on this forum and others about MTHFR, and it could perhaps be a common denominator that is contributing to toxicities from a range of sources (including possibly B6 and fluoroquinolone antibiotics).
The question is, if we identify we have a genetic defect contributing to all these issues (and we can't very well change our genes), what is to be done?
The methylation pathway - Dr Amy Yasko has a facebook page and a website - and she has various books/pdfs with excellent information. Her focus is on the most critical SNPs in the methylation pathway. She also has a methylation SNP test. If you want to learn/know more you could read her books and she also have videos free online to watch where she explains what methylation is and the various SNPs and lots of other info.
G6PD enzyme can be impaired by high sulfate level, one does not necessarily have to have the genetic defect.
In regard to sulfite/sulfate - CBS and SUOX are involved this requires various nutrients e.g., molybdenum boron magnesium, B6/p5p.... any deficiencies will impair enzyme functions. But it gets more complicated - heavy metals will interfere with the body using nutrients (vitamins/minerals) - then there is bacterial infections, yeast, gut flora imbalances, parasites...
If one has bacterial infections, things like strep, H.Pylori they produce hydrogen sulfite and this will cause a high level of sulfate and will deplete various nutrients
Certain SNPs will predispose one to being more susceptable to bacterial and parasitic infections, certain SNPS make one more susceptable to more severe infections -- e.g. SHMT, BHMT, ACAT, CBS..
Methylation needs to work properly to silence virus, needs to work properly for correct gene expression and a lot of other things as well..
One can have various SNPs and this does not automatically mean it is expressed - functional testing will give good info, but then one needs a practitioner who has an understanding of methylation/methylation pathway, how to interpret amino acid test, organic acid test, hair test, blood tests...
In regard to SNPs in the methylation pathway this is where Dr Yasko focuses her attention, it is about getting methylation to work properly using nutrients to bypass genetics...
The deeper one looks into this the more complicated it gets. It is about genetics, methylation pathway, gut issues, bacterial infections (strep, helicobacter pylori) anaerobes/aerobes levels of E.Coli, lacto and bifo these various things needs to be in the correct range, too high or too low is no good. Parasites, heavy metals.
MTHFR does not work in isolation need to look at the bigger picture.
A person can be B6 deficient, and they take B6 or P5P and it causes problems - if one has chronic bacterial infections need to be careful the dosage of taking B6/P5P.
If you want to know more view Dr Amy Yaskos videos and her book/pdf which is free on the internet to down load called "Autism: Pathways to recovery" don't let the word autism put you off because the info in the book is relevant/applicable to anyone/everyone it is about methylation/methylation pathway, SNPs and addressing the issues.. she also mentions G6pd
Wrong sensations in the feet and finger tips, and tons of other symptoms - for me it is nutrient deficiencies, heavy metals, chronic bacterial infections, strep, gut flora imbalances and parasites and genetics... I have been on the nightmare road for a long time, taken me a long time to find info, get answers.
Blood tests, some are useful, some are not. What shows as high in the blood does not necessarily mean it will be high in the cells. Some nutrients can show as high in the blood but the cells are deficient.
Organic acid test has markers for B1,B2,B3,B5,B6,biotin,B12, folate, neurotranmitter metabolism markers and other info - me personally I would never use a blood test to see B6. I would use an organic acid test.
Methylation needs to work properly so the body can get rid of heavy metals. In her book she explains what methylation is, why it is important and what it does..
wtrboy, this is interesting, because I had a bad reaction to Cipro in July. It was pretty rough and I could barely walk for a while, pretty similiar symptoms to you. So yes, Cipro can do all of this.
As part of my recovery, I took a regimen of supplements, was low on quite a few things, D being the worst. I was getting better steadily, walking, swimming, etc. - but then wondered why recently my recovery stalled, and I was getting additional dizziness, random muscle twinges and tightness in my back, and increased tiredness/soreness in my arms and neck.
Well, it turns out one of the magnesium supplements (malate) I started recently has too much B6 added - my recent blood tests show a high level of B6, but just outside the range, when everything else is normal. I feel fortunate to have caught this before it got out of control. I stopped anything with B6, even my multivitamin, a few days ago. The twinges have improved a bit, still a little dizziness, will have to be careful for a while to avoid additional B6, and go back to magnesium glycinate without the B6 added.
I have had a b6 toxiciy and mine is 90 as well, however they didnt find it for three months as they thought i had a auto immune disease. I also went on a gluten free, dairy free and sugar free diet, which helped with the edema I had, my vision was going, and could not make a fist, ankles and knees swollen and pain full ect. I think my b6 level were more then likey in the high 200-300 hundreds and because I went on this diet it brought it down to 90 just my theory. I lost 16 kilos in weight and could hardly move. I have never taken b6 and think its was either in fortified foods or a lack of othe b vitamins in my diet that made me store b6. I found out later that my b12 was bery low and i fixed that, which in return halved my iron count which brought it back to normal. I have had three months of work, and Im going back in two weeks. I can make a fist after about a hour after I wake, my vision has gone back to normal, my edema has gone but does come back if i go off my diet and if I go on long walks which makes my hands worse. I dont eat anything with b6 in it if I can help it. you only use 1-2mg per day so if you eat b6 foods you dont use the store of b6, and your levels wont go down. When I found out I had a b6 toxicity my docoto didnt even know what it ment, he gave me a copy of my blood tests and said I cant find anything wrong with you, it wasnt till I got home and read through them that I found that my b6 was toxic. Its been a hard long road, but there is always hope. Go organic and unless they actually find out you have something else and it shows up in a blood test I wouldnt believe the doctors, b6 toxiticy is very rare and the symptoms are different from person to person, Im shocked how many things I have wrong with me and i to was a very fit person prior to this I never got ill, Im just hoping for the day when I wake that my hands are normal and all the pins and needles are go. Hope your recover soon.
I have read most of your posts in this forum and I am wondering if I may have missed what I am about to state here, which is, that B6 toxicity probably varies amongst individuals according to the detoxification status of each individual's body (i.e. the body's cells). Theoretically, it may well be possible to take "very high" doses (i.e. 100-200mg) of B6 over a long period without toxic effects. I suspect that most of the scientific testing may have been done on "healthy" individuals who may well have been able to tolerate the high doses. The rest of us "unhealthy" humanity will likely suffer adverse effects of varying intensity and timing (relative to our respective start dates of supplementation). Unfortunately, mainstream medicine appears not to have any input into the issue of the varying detoxification status amongst people. "One size fits all" is probably not a valid assumption for safe B6 supplementation, regardless of the scientific testing.
The reason I state this is that my understanding of B6 is that it is involved in a key component of the detoxification pathway in the body's cells, the production of Cysteine, the precursor to Glutathione, itself the "master" antioxidant in the body. Production of Glutathione is the first phase of the 3-phase detoxification pathway in the body's cells, and B6 is implicated in this via its role in the conversion of homocysteine into cysteine.
High intakes of B6 could therefore lead to high levels of Glutathione. This however is not always a good thing. This is because, if phase 1 of the detoxification pathway is upregulated with no corresponding upregulation of phases 2 and 3, then the result could well be adverse even after relatively short periods of high-dose B6 supplementation. The degree of adversity will depend on the relative effectiveness of the later phases in the pathway.
Therefore, if my understanding is correct, then one should not embark upon a supplementation regime without addressing phases 2 and 3 of the pathway.
I researched the foregoing because of my own health and wellness issues. My sources are (in the main), "Methionine and Methylation: Chicken or the Egg" (which can be downloaded from the web; authors: Nancy Mullen and Amy Yasko) and (most importantly) a 3-hour video of Dr Christopher Shade's 2012 lecture delivered at the International Academy of Biological Dentistry and Medicine. This lecture, which to me was a massive eye-opener, may be viewed at http://articles.mercola.com/sites/articles/archive/2013/01/13/mercury-detoxification-protocol.aspx .
In concluding, I would hasten to add that the foregoing is based entirely upon my understanding of the underlying issues related to activation of the detoxification pathway, and the risks that may be attendant upon this activation. It is in no way "gospel". My point is that at least some of the varied symptoms (and their timing relative to start of supplementation) attributed to B6 toxicity may well be the result of upregulating phase 1 of the pathway to the exclusion of the other phases. I believe this needs to be considered if one wishes to take up B6 supplementation for any length of time.
Currently, I am having early symptoms of B6 toxicity (intermittent, sharp stabbing pain in feet) and symptoms of imbalance in the detoxification pathway (itchiness on arms, neck and upper chest, followed by "burning" sensation and flushing). I suspect the latter is caused by the released cellular toxins not being able to exit via the usual excretory channels due to the "downregulated" phase 3 relative to the "upregulated" phase 1. I had been on supplementation for about 50days when the symptoms started to manifest. I have now discontinued the B6 (33mg Pyridoxine daily).
I've been recovering from what I think is B6 toxicity for almost 8 months now. The manifestation of my symptoms though is a little different than what other people seem to have. I'm looking for clarification on what might be going on with me....
My main problem is sleeping. While I'm awake I have almost no symptoms, I feel almost completely normal, but right as I fall asleep, the neuropathy builds up, primarily in my hands, but also my feet. The neuropathy kicks in literally right as I fall asleep, and is pretty much there, as far as I can tell, the whole time I'm asleep. It's somewhat lessened at this point 8 months out, so that falling asleep isn't the issue, but after about 6 hours of sleeping, the neuropathy gets worse, and sleeping longer than 6 hours becomes almost impossible.
Does anyone have symptoms like this? It's so strange that, during the day, my hands and feet feel almost completely normal, and the neuropathy only manifests when I sleep. I've tried everything, changing positions, altering diet, everything, to see if I can change the outcome or make sense of it, but the neuropathy -- burning, tingling -- is always there, and I'm pretty much persistently sleep deprived.
At almost 8 months, I haven't improved very much, although I am feeling better. I can work and maintain a somewhat normal life, but am very restricted due to sleep deprivation. I've been to many doctors here in southern California, and none of them have seen this exact manifestation of symptoms. All my medical tests show things are normal.
Also, thanks everyone for posting on here and following up. This board has been immensely helpful and inspiring for me. I've been lurking for 8 months, finally joining the group.
How much B6 were you taking before you became symptomatic? I am at my 8 month recovery point after 200 mg daily of b6 and other assorted poisons/vitamins for a year. Unlike you, my symptoms have shown no favoritism for day or night. I take magnesium if I am having a bad night, and it does help. Do you, or have you taken anything to help calm the nerves. I remember reading somewhere in my search for answers, that some people's neuropathy can be worse at night. Maybe this is the case for you, either way I am very sorry you are having to deal with this. I agree with you that this site has been extremely helpful, and it has helped keep me sane : ) After 8 months, I too am a little better, although I have some old symptoms that have roared back to life and brought some new symptoms with them!
I'd like to thank everyone for their generous support and advice on this forum. I've determined that my neuropathic systoms are due to toxicity from fluoroquinolone antibiotics (Cipro, Avelox, Levaquin, etc,) rather than B6, although my B6 levels were elevated 15 months ago when the symptoms started. I would like to urge everyone to please, please avoid these antibiotics. I did not make the connection that Cipro was causing these symptoms until I had taken several courses of the antibiotic. The adverse events can be delayed by several months owing to DNA damage. I just want to wish everyone healing here and thank you for selflessly devoting your time to this forum.
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