Healing Journey

Here are some of our group members’ experiences during their vitamin B6 toxicity journey:

Kim K.

My new doctor diagnosed my toxicity off of bloodwork my neurologist had done. He retested after three weeks and my levels were normal. He explained that my body can begin healing after the levels are normal. He said 6 to 18 months recovery for nerves and any other effected areas to heal.

Rahul A.

My name is Rahul. I am forty years old. I am from India. I came down with b6 toxicity in October 2021. This happened with just a 3 week daily dose of b6 in a b-complex capsule that had a total of 5 mg b6 in it. As I understood later, my previous intake of b6 supplements (again daily dose never exceeded 5 mg) between sep-2019 (15 days), summer 2020 (3 months) and summer 2021 (another 3 months) would also have played a role in sending me over the edge finally in October 2021. All this while, I was also eating a very healthy diet with plenty of green vegetables, fruits and whole grains. Little did I know that I was slowly but surely poisoning myself. While I jogged regularly through out this period, it was the only form of exercise I got (and one that can reduce muscle mass, if overdone and dehydrate you if you don’t know about proper hydration). I drank plenty of water too, not knowing that even excessive hydration (without the necessary minerals) can actually deplete electrolyte levels in our body through excessive hydration and resulting excessive urination. All these factors may have contributed to the slow build up and slow elimination of b6 in my body.

While B6T nearly debilitated me in October 2021, the signs of it were visible even before that time. Since Sep 2019, I had been having episodes of light sensitivity, eye pain and pressure, pins and needles, limbs getting numb (occasionally if I slept with my hands tucked under my torso or if I sat in the same position for even 15/20 mins).  I also had persistent breathlessness and dizziness which is something I blamed on a tight tummy and a stiff neck. October 2021 saw my mom getting admitted to a hospital for 3 weeks for treatment of advanced cancer. Those three weeks were very stressful with irregular eating, (along with the damn b-complex that I resumed thinking foolishly that it would give me that extra boost of energy), little exercise and low water intake.

My symptoms started in early November 2021 and were numerous. Starting with the most severe, I had tremors in my hands, wrists & fingers (which made me very clumsy), general bouts of shaking through out my body, a feeling like the nerves in my arms were on fire (initially during recoil), severe pain in forearms (right arm more than the left), bone pain in arms, extreme fatigue (had never experienced anything like it up till that point), dizziness, severe depression and anxiety, extremely cold limbs with freezing hands and many others random pains and aches that came and went.

About 4 weeks after ceasing supplementation (stopped at the end of October 2021), I got a blood test done (end of November 2021), having co-related by symptoms to b6 toxicity based on what I read on the internet. My level was 41 against a range of 8-27. 

The fact that I had consumed very low doses initially worried me. The internet had me believe that toxicity at such low doses was not possible. I dug deeper and found out a Dutch study that had seen numerous cases of people developing toxicity at doses as low as 1.5 to 2 mg per day.      

I was in pain but hunkered down, aiming to just wait out the storm. I had a long and drawn out recoil which lasted a good three months (i.e. till the end of January 2022). Then for 3 months between February and April 2022, it was a roller coaster with my symptoms swinging from bad to worse.

In May 2022, my symptoms flared very badly. I freaked out totally and started looking out again. This time, by God’s grace (called Beth Smarzik), I found the b6T website. I read the website end to end in a day and then re-read the contents several times. For the first time in 3 years, I finally began understanding what was wrong with me. I joined the FB group and quietly followed the stories of those who had recovered before me. I read the healed members spread sheet, hundreds of times over the first few weeks. 

My healing regimen:

It took me until the beginning of August 2022 to really start the protocol. This is what I did:

• I completely eliminated chicken, potatoes, corn, bananas, avocados, fenugreek, spinach etc from my diet. (In India, corn and avocados are in any case not  a part of our staple diet so this bit was not tough.). The only high b6 foods that I continued consuming in limited quantities were wheat (Indian bread called roti/chapati) and lentils (called Daal in India). I also stayed away from chickpeas and peanuts.
• My daily b6 intake in the period August 2022 to Dec 2022 was about 102% with a variation of about 5%. So, my b6 intake would have approximately varied between 97% and 107% on most days in this period. There were days when I had only about 70% of RDA, but also days when it went to 150%. Both extremes were bad in terms of worsening of symptoms.
• I did not individually track my potassium, iron, sodium, carbohydrate or protein intake. It was just too much for me. Maybe I was foolish, but all I could do was to watch b6, water and salt intake specifically and leave the rest to God. My main source of protein was eggs, milk, cheese ,yoghurt, lentils, lamb and mutton (meat mostly during the weekends only). I did not pay too much attention to the 1g of protein per kg of body weight benchmark. I think its just a big pharma gimmick (or so a Netflix documentary that I saw some time ago claimed). With the sources of protein mentioned above, even within the RDA b6 diet, I gained a bit of muscle mass in 6 months of weight training.
• My water intake was consistently above 3 liters each day (between 3.5 and 4 liters actually). This included anywhere from 200 – 400 ml of coconut water almost every day and about 200 ml of milk in my coffee. Occasionally (not more than 3 or 4 times a month), I had some orange juice as well. I added some salt (again could never get myself to measure the salt precisely), to about 1.5 to 2 litres of the 3.5 to 4 liters that I drank. I think I may have overdone the salt bit because I did not measure it precisely.
• I exercised with light weights about 3 to 4 times a week (no more than 30 min sessions) and ran 5 kilometers about once or twice a week. I also walked from the metro station to my office and on the way back home which gave me about 20 mins of walking 5 times a week. I joined a gymnasium and made sure I exercised different parts of my body on different days. This is because it is possible for b6 to be expressed only by those muscles that are being exercised. I did not want any of this poison lurking behind. Exercise flared me up for the first four months. My tremors and shaking would just exacerbate for hours together after every session at the gym. Month five onwards, I started feeling better after exercise. 
• I was terribly depressed and my family’s lack of understanding of what I was going through made it worse. They thought I was going nuts measuring every ounce of food that I consumed. During this period, I just thanked god for whatever he had given me (a loving family, a good job) and tried making myself useful to the world. It was not easy.  

Things that I mostly got right:

• RDA (as mentioned above).
• Near elimination of many high b6 foods
• Whole body Exercise
• Overall hydration (consistently 3+ liters of water, with salt in 1.5 to 2 liters)
• Managed to stay away from any extra supplements and medications. (just clenched my teeth and put up with the pain to avoid too many pain killers)

Things that I could have done better:

• Sticking to not more than 30% RDA in every meal (I failed several times with disastrous consequences. Days that I had to travel for work were very tough). Being consistent with small defined meals was a problem (it was either a bit over the 30% limit or no b6 at all if I skipped the meal. (Initially I was also scared of eating because it gave me instantaneous reactions)  
• I went below 80% several times during the period Aug 2022 and Dec 2022. It made my symptoms even worse. The shaking and tremors would amplify and my arms would ache even more. My limbs, especially the hands and feet would go ice cold. Generally, it was my right arm that ached more. When I went too low on b6, the left arm and my legs would start aching as well.
• I could not slowly sip my water, salted water, coconut water all day long (always had to chug given the nature of my job)
• There was not even a period of 2 consecutive weeks when I got all parts of the protocol right. At any point, I was either erring in one or more of the three aspects (diet, exercise & hydration)
• I could have kept a better track record of my blood pressure, blood sugar, thyroid and vitamin levels (B1, B12, D etc.)
• I should have eliminated alcohol, I did not. For me it was like 30 to 60 ml over the weekend (only whiskey, no beer as beer is high b6). The reaction on Monday was mixed, sometimes bad, sometimes not. There was so much happening that I could not isolate specific reasons beyond a point in any case.)

My timeline is summarized below:

1. Oct 2021 – B6 T surfaced. I ceased supplementation.
2. Nov 2021 – Jan 2022 – recoil – new symptoms, worsening of old symptoms, disappearance of some old symptoms (I was not on the protocol)
3. Feb 2022 – July 2022 – roller coaster swinging between bad and worse. (still not on protocol, came to know about it in May 2022 but just could not implement it well enough for another two months i.e. till July 2022. Between Oct 2021 and July 2022, core symptoms like shaking, hand tremors, muscle weakness and spasms never went away)
4. August 2022 – Dec 2022 – Tried sticking to the protocol as much as I could as mentioned above. Experience a very painful withdrawal of b6 as it started leaving my nerves (through b6T diet) and muscles (exercise). Some symptoms went away, core symptoms (pain, tremors, depression, dizziness etc.) remained the same or worsened for weeks at a time.
5. Jan 2023 – till date – over a month of sustained relief for the first time since Oct 2021. The tremors are significantly diminished (still surface from time to time but I am not that clumsy anymore, I don’t feel as it my mobile phone is going to jump out of my hands every time I hold it), the dizziness and breathlessness is intermittent (fairly manageable and does bot trouble me physically or emotionally) and almost all other moderate, minor symptoms are gone. For the first time in nearly 15 months, I am able to work without hindrance and am beginning to feel relaxed. 

My learnings:

1. Depriving body of excessive incoming b6 is important. There is simply no other way around this. We have to follow the RDA B6T diet to the best of our ability, for our nerves to heal.
2. Water, salt (sodium & potassium), electrolytes and sugar have a very important role. Hydration is not just drinking lots of water. The recommended additions to water (salt & sugar) and upping potassium matter a lot in transporting nutrition and maintaining essential healing abilities (read more about sodium, potassium pump and the role of sugar in delivering nutrition. The members, especially Beth, know it all too well.)
3. Exercise, but don’t over do it. Try and cover as many body parts as possible. Especially the ones, that are affected. Once I started working on my hands (instead of just my legs while running), I think I recovered quickly. Weights worked out great for me.
4. We are all different. And yet, the protocol works for us all. Its just about time.
5. This website, the FB page and the people who run it, are saviors.
6. I am never touching another artificial or natural supplement again in my life. 

My outlook:

1. I am not healed a 100% yet. Been only 6 months on the protocol. I intend to stick to it till at least mid 2024. That would be 2 years on the protocol and 2 years and 9 months since stopping supplementation. Going by my time line so far, I am quite hopeful that I would recover fully by then. 
2. I may have a big rebound coming or several smaller ones over the next 12 months. Knowing what I know now about healing, I am cautiously optimistic about riding these waves out. I have learnt that when my symptoms do not trouble me much, it is easier to follow the protocol and wait out the remaining period for incremental healing.
3. I hope to go back to a normal routine (regular unrestricted diet, regular hydration, a bit of exercise every week), in about 12-18 month’s time.)

Summary:

1. This is easily the toughest thing I have done in my life. The weird symptoms and the ignorance of the root cause nearly debilitated me.
2. I cannot thank Beth enough for doing all that she has done and continues to do. She is like my guardian angel.
3. The website and the FB page are a great place for you to seek refuge during this crisis and learn about how to heal yourself.   
4. If b6T is your issue, the protocol will in all likelihood work for you. Just give it time. My sense is around 2 years on the protocol should heal the most difficult of cases to a very large degree, i.e.to a point where b6T does not hinder life on a daily basis. 

Shane V.

Dear all, so I have officially been diagnosed with length dependent small fibre neuropathy dysautonomia. Due to vitamin B6 toxicity. I have written other posts for some background.

Beth, I would like to endorse these doctors and if anyone is in EU or Switzerland, they will help. Dr. Joël Cuénod in Basel, Switzerland and Prof. Einar Wilder-Smith at Kantonsspital Luzern, Switzerland.

My PCP (Dr. Joël Cuénod ) at first had no clue about B6T. But now has a full understanding through my case. He referred me to Prof. Einar Wilder-Smith who runs a specialised SFN clinic and is very actively involved in SFN research.

In Luzern they put me through the works. Multiple tests were conducted; blood, genetic, neurological i.e., tilt table, sweat tests, punch biopsies, EMG etc etc to rule out any other underlying causes.

All tests came back normal except for a small part of the sweat test and the punch biopsy. My calf has 60% less nerve fiber density and my thigh is ok. That is classified as length dependent small fiber neuropathy. The only thing out of my medical records that is an anomaly is high B6 when symptoms started. Hence, the diagnoses due to B6T. Otherwise if I didn`t have that, it would be idopathic.

The good news is that Prof. Einar Wilder-Smith said there is a very good chance for recovery and sees recovery in many SFN patients including those with COVID. It just takes time and emphasised patience. 2-3 years was his estimate, but who knows? I am not putting time on this. He said the nerves do heal and grow back at around 1mm a day. He also recommended aerobic exercise as the choice of exercise to focus on. He also said that this should not put me at risk for any other diseases or reduce life expectancy. It will only impact quality of life. Which, I felt was good to know.

We had quite a long consultation regarding my results, around 1 hour. It’s too much to write in one post. But if anyone is interested or has any questions I am also very happy help. The support group already has a wealth of info so most of our questions are already answered there.

Now the best treatment going forward is sticking to the protocol. Aerobic exercise and rest. With time, it should all improve and heal.

Noel B.

In the next couple of weeks I will hit my 1 year mark since the last time I took a supplement with B6 in it. 

A few observations: 

Your greatest friend is TIME. For some it’s 6 months, for others it’s 2 years or more. I can see that. Nothing will help more than time. Be patient. 

Salt, water and potassium is key. Hearts of palm, dried apricots, almonds or almond butter, coconut water are all relatively low in B6 sources of potassium. 

RDA B6 is also important. Chronometer is your friend.

Do not assume that any given food is causing symptoms. While this may be the case, it could also be coincidence as symptoms come and go seemingly at random. I needlessly painted myself into a food corner causing me more grief than necessary. Sometimes, you’re just in a cycle, a wave and you just have to ride it out. There will be ups and downs.

Exercise. It’s also super important. Start gradually. Don’t push it. 

Cold showers. I don’t know what excess B6 combined with a dehydrating event does to your vagus nerve, or to the production of neuro transmitters, but it ain’t good. It’s well above my pay grade. I can tell you however, that daily exposure to cold water can help with both these things. 1 to 2 minutes full cold, full body, works wonders for me. It seems to build too. The effect grows with consecutive days, weeks that you do it.

At just about a year, of these symptoms: Lightheadedness/dizzyness/vertigo, anxiety/panic, restlessness, electric buzzing in extremities, internal vibration, extreme light sensitivity, bounding pulse, tinnitus, whole body tremors/chills, insomnia, ocular migraines, involuntary muscle twitching everywhere, gait/balance problems, depersonalization/derealization, mild neuropathy, nerve pain in hips. Only mild anxiety remains, and it’s gradually dissipating. 

Medication. I’ve been pretty open about having to take anxiety medication throughout this process. Not everyone gets that extreme anxiety/restlessness/agitation, 24/7 fight or flight. But for those that do, medication may be necessary. Do not feel shame, use with caution and most of all respect. 

I’d like to thank Beth Smarzik and everyone else in this group that has answered my questions, and shared their experiences. Without you guys, I don’t know where I’d be. 

My journey is by no means over. Almost there though, I can feel myself coming back in a few, but ever more frequent precious moments at a time.

See also: Pre-B6-Toxicity-Diagnosis Horror Stories and Beth’s Story.