I have been having testing done and one that was run was Vit b6. No one ever thinks to check that. However the small fiber poly neuropathy tests include that test. If you have toxic levels, which I just found out I do, it can cause neuropathy, kidney and liver malfunction and heart attack or stroke. I only took vitamin daily and cut b12 complex since November over counter. However, I’m toxic and I should not be. What is the detox? What is the treatment? All I’m told so far as doctors never heard of it, is stop the supplements. The more I read it seems toxic people have to stop eating foods rich in it and there’s a lot. My doctors are trying to reach the doctor that mailed the slip of labs to find out what’s next?
Read up on this. Ask to have your b6 levels checked.
The weird thing too they will tell you to take b6 as a treatment for nerves right? But if you become toxic end result will be neuropathy and it says it can be permanent damaged to the nerves.
Get your levels checked. If anyone is toxic let me know and when I find out more I’ll update this post.
It’s a great possibility that you also can have toxic levels. I have read of people with toxic levels that never took vitamins or supplements. It’s very concerning.
We need to try to stay on top of this as this might be a missing link in erythromylalgia.
Will be watching this post…my neurologist (just saw him for first time) has ordered two different B6 tests…will watch closely after reading this post. I have SFN and he is investigating a possible “cause.”
Absent a known malabsorption or deficiency, taking a vitamin supplement is generally ill-advised. The typical western diet provides more than enough nutrients for adequate intake. Vitamin toxicity from diet alone is rare and only known to occur with the fat soluble vitamins (A,D,E,K). For instance, hypervitaminosis A can occur when consuming large amounts of liver. Any online reports of such incidents occurring with the water soluble vitamins (B,C) likely come from individuals unaware of supplements they are ingesting and/or misinterpreting results.
Both of my tests were normal.
That’s not surprising. Without supplementation people don’t have to worry about vitamin B6 toxicity.
Actually I’ve read a lot about it as I’m researching it. There are many many people who have not taken any sort of supplementation and yet they have toxic levels and not sure why. It’s very disturbing as the literature says that you are fine even if you take multivitamin or a supplement in small doses which most vitamins have an acceptable dose. It’s when it’s taken in large amounts that literature says a problem. But again, my research of patients with toxic levels have not taken any supplements and their levels won’t come down. Time will tell with me and I will keep updating as I find anything out.
Vitamin B6 Deficiency also can cause neuropathy. Paradoxically a deficiency can appear to be an excess,(elevated), this is because of a possible genetic mutation called the CBS mutation. With this mutation your body does not utilize B6. Mine appeared elevated in bloodwork also, I was not on any kind of supplementation at all. I discovered I had a MTHFR mutation and sometimes CBS mutations go with it. MTHFR is a genetic mutation which prevents one from processing and utilizing folate and B12. Bloodwork for folate and B12 are USELESS if you have this mutation- my B12 was elevated in bloodwork and my folate measured in normal range when I was seriously deficient in both!. I have not been tested for CBS as I would need to pay out of pocket for this test. Instead I decided to start supplementing with Pyrodoxal 5 ,( the kind of B6 required for people who cannot process it). My neuropathy pain has improved since then- probably not only because of adding the Pyrodoxal 5 ,( I’m also because I’m finally being treated for Lyme Disease and Coinfections which caused the Erythromalalgia, Neuropathy and Raynauds and many other problems.) But the point is, you cannot go by levels in blood work for this and many other nutritional measurements , it is not accurate. Any homeopathic/Naturapathic Dr will confirm this. ASlso you would have to be consuming vast amounts of B6 for it to cause neuropathy and your elevations would have to be VERY high. Also it is practically impossible to get this elevation from food sources. it is very possible many of us rather are deficient in this vitamin because we cannot process it. In this case you must supplement with Pyrodxal 5 the viable form- NOT B6. If I had a true excess of B6 ,adding in the Pyrodoxal 5 would have made symptoms worse for me and it did not. You can always get the CBS mutation test done if you want to spend the money- it is available online from I believe 23 and me- this will confirm whether or not you need to supplement with Pyrodxal 5 conclusively.
I was more worried mine might be low but it was normal.
The reason physicians don’t often test for B6 deficiency is because it’s abundant in food. You’d need a topline condition (an eating disorder, malabsorption, alcoholism, dialysis from renal failure, pyridoxine-inactivating drugs) to become deficient. Anyone consuming a normal diet absent such conditions will not become deficient.
But I learned that in school years ago, so it’s always possible there have been new discovers in the interim. I’d just counsel that medical information should always come from peer-reviewed sources. If its not been published in a peer-reviewed scientific journal, it’s probably not true.
I was just retested and my levels are back to normal. Not sure what that means. My research says that it can permanently damage the nerves. But some have returned back to replenished nerves. How long? I think up to two years. It I have no solid evidence other then what people are saying. My doctors are going to try to find this information out.
Jane 3. —
Who is treating you for Lyme ?
Is it a llmd ?
Also are you taking any other supplements besides the pyrodxal5
HI, so treatment of lyme is difficult , llmd’s are few and they don’t take insurance so currently I am seeing a rheumotolgist and a GP who used to treat lyme- neither are experts- it’s very tough going I have to do a lot of research on my own so supplements are evolving- I am going to start Japanese knotwood, I have Babesiosis , Bartonella Neurological Lyme and couple other coinfections- so going to use cryptolepis, sida acuta and liposomal artemisian from hopkington, been taking Mepron for 7 months with IV Azithromycin and oral minocycline and IV Rocephin rotations- also take methyl b12 methyl folate vit c, d, 70 Billion probiotic baby aspirin milk thistle magnesium nystatin thyroid med just switched from pyrodoxal 5 to a b complex called b minus by Seeking Health- it has pyridoxal 5 in it plus some other b’s too also take a whole food muli vitamin by Mega Foods- been at least 4 decades many multi system infectious disease - babesiosis came from a blood transfusion 10 years ago-have small fiber polyneuropathy EM raynauds and mnay other problems-neuro lyme is very very bad and I am convinced many people using this website have some form of lyme and coinfections and don’t know it- infrared sauna is good for detoxification
Amazing your very much an inspiration to fight !!
Interesting information !!!
I too finally got to a llmd the other day and just started the process of starting treatment of Lyme …waiting for the igenx results still though to figure out exactly what co-infections I may have
But I’m interested where I am going to be in a couple months…?.. if any improvement??!
Jane 3 — Have you noticed any improvement on the EM ?! Or day to day living
hi there, thanks for your kind words- I wish I could have a personal
connection to all of you folks and wrap everyone up in a big hug- I have
heard it said Lymies are special people- spiritually equipped in some way
to endure the unendurable with so little support and understanding from
both the medical community and society in general-our stories are so tragic
and bleak but we must go on some how
so in my case the pain and erythromalalgia has improved on antibiotic and
antimalarial treatment- some of my pain is due to EM, some from widespread
neuro/vascular damage: peripheral neuropathy,(polyneuropathy and or
mononeuritis multiplex), vasculitis, and some is just straight up
Lyme/Bartonella/Babesiosis infectious disease pain- there is plenty of
overlap here like a venn diagram but basically all rooted in infectious
disease-domino effect of widespread inflammatory process-so yes there is
hope my friend- no cure - still have pain that fluctuates but it is not
nearly as bad as before!!! but I was in VERY bad shape before-have been
unable to work for about 7 years now- also still have many other disabling
symptoms- symptoms cycle as there is a rythym to each infection even
throughout time of day- also there are toxins released during treatment
herxheimer reaction which triggers worsening of symptoms- had two tries on
antibiotics which I had to stop because PAIN GOT WORSE which I did not
believe could be possible!!! was going to slit my throat to make it stop
so had to stop treatment- but tried again later with different protocol and
pulsing and getting thru- also I am not covering all bases as one must not
just kill spirochetes but also build immune system and detox- I recommend
Infrared saunas for detox- also have done IVIG but last infusion had huge
inflammatory response with horrible back and chest pain and went to
emergency room-think it was small blood vessels inflammation- am sure I
almost died- so no more IVIG treatment for me- have your subclasses checked
for deficencey Ivig can be helpful- I wish I could continue mine- I am
still looking for a good Lymne dr- good luck to you my friend and have hope!
It is also very interesting to note that we could in fact have a tic disease and there just isn’t a test for it and it’s unknown. My line was positive. Saud to be a false positive because of auto immune as the blot was negative. I have to always question… Could it be a tic.
I have raynauds and EM, ongoing for 7 years. Recently tested for and dx with the MTHFR gene mutation. Have been prescribed Metanx, haven’t started it yet. I was not convinced it could actually cause this but find reassurance in your post. Like you my B12 levels have always been very high but I have been supplementing with high doses of B12 and folic acid for past several years and I do believe my symptoms started a couple of years after I started on these meds. I have since stopped and now waiting to start the Metanx. I find hope in your post and thank you for sharing.
Every doctor seems to have different opinions about the toxic b6 levels. I was told you could see symptoms improve up to one year after stopping supplement but most say three months to six months. However. I just saw another doctor who dies research on small fiber neuropathy etc and always tests her patients for toxic levels and ste said you stop supplement that’s all. I asked could some of my symptoms go away and her response was no. So I really have no idea. No still have em and all my symptoms and my levels normalized. But it’s important to note while some doctors say take it to help your nerves, I do believe now thats the wrong approach. You are better to eat things high in b6 and b 12 but never take supplements… Unless you are low and there is no other choice. I’m that case, get your levels checked monthly.
I absolutely agree with you - the more I look at Lyme, the more it looks like a condition that many chronically ill patients should be evaluated for… Interestingly enough, I tried a course of Buhner herbal protocol last year, and that was the time that my finger swelling went down - first time in months… I am thinking to do it again and see if the correlation is true.
Hi there. just learned i have toxic levels of b6 (240 with upper limit of 20). I asked for the test as part of my sfn testing…i have had em since 2015. my dr. prescribed folbic (compounded bs) for elevated homocysteine…when it didn’t work, she doubled the dose thinking water soluble so no worries…but, i have learned that b6 can still build up and cause toxic effects. i took 100 mg + levels for several years and now it caused my neuropathy which triggered my em…this is not well known, and if i hadn’t pursued on my own diligently, i would still be taking the supplements under my dr’s orders and getting worse from “idiopathic” sfn. and, i still have detox in front of me and understand there is a rebound effect that worsens symptoms after discontinuing b6. hope it’s not too late to turn this around.
You could sue your doctor for malpractice. That’s terrible.