Healing Stories

Cheyenne T.

WOW! I became toxic after my doctor prescribed me Diclegis for severe pregnancy nausea. Which had 10mg in each pill – taking multiple pills a day. Along with my prenatal which had 10 mg a day. And then I was using these little pregnancy nausea candies which have 15 mg in ONE CANDY..!! (Up to 4 candies a day which I was doing).. I am APPALLED! I was taking roughly 120 mg a day for 9 months. The moment I gave birth and stopped all the medication (because my pregnancy nausea was gone).. is when the SEVERE nerve pain, vertigo, muscle weakness, migraines, etc began. For a year and a half of being hospitalized EVERY MONTH.. to having to stop breast feeding early because I was simply too sick.. to almost committing suicide because I felt my spouse and son were better off without me – who was deathly sick with NO explanation of what was wrong with me. Being told I was Suffering from anxiety and depression. Being dismissed by every doctor – even after discovering I had B6 toxicity still being dismissed! I just want to thank everyone in this group and especially the admin‘s who have typed out a protocol. A protocol that works. Within four months of doing the protocol I was essentially pain-free. I accidentally went over my B6 a few times this month and now I’m having I’d say 10% of my pain back but quite frankly I will probably stay on the protocol the rest of my life. This group saved my life. I was in a shingles support group because the nerve pain felt like the onset of shingles. One day someone commented “have you considered that you might have B6 toxicity” because a rash never appeared. I was taking antivirals every day to prevent the shingles rash of appearing. Little did I know the antiviral medication was making me severely dehydrated and making my B6 pain even worse ! I also was avoiding sodium because you’re told that sodium isn’t healthy for you. I had my sodium levels checked and they were severely low. I am just so grateful for this group. I am so grateful to know what is wrong with me. I don’t think I’ll ever fully be healed but I am okay with that. As long as I can monitor the pain, I am beyond happy. Thank you again to everyone in this group. I am constantly learning more about B6 and spreading the word to everyone I know!

Euline B.

The protocol definitely works, this group saved me! Thank you Beth!

My B6 toxicity story… I have always been a very healthy happy woman. At the end of 2020 my health took a turn for the worst and I went through 6 months of hell due to Vitamin B6 Toxicity. In November 2020 I had to have dental surgery for my wisdom teeth. I suffered nerve damage in my face from the procedure. I took a popular recommended B-vitamin to try and heal the nerve damage, and ended up completely toxic by the end of December 2020. The vitamin contained 200mg B6, I took one daily for only 36 days. This was enough to cause severe toxicity. About a month after starting the vitamin, I started to experience symptoms… I suffered the following symptoms: Lhermitte’s sign – buzzing and vibrations in my abdomen and arm when I lowered my head, this was by far the scariest symptom Tingling and numbness (Hands, feet, arms, toes) Severe anxiety and depression Loss of appetite and weight loss Muscle weakness Chest pain Heart palpatations Sensitivity to medication Insomnia Constant shakiness and feeling horribly sick Tinnitus – Still have a little bit of tinnitus Eustachian tube dysfunction – Still experiencing this. Things that helped me: This B6 Toxitcity group on Facebook Exercise for sure! Enough water, salted water and coconut water Diffuser and LED candles – this helped calm me Ice packs and heating pads Benzodiazapines (2 weeks only) Anti depressant (4 months only) Seeing a psychologist Headbands and noise cancelling headphones for ear problems Meditation Music Prayers and my faith Doctors did not help me! I have been so disappointed in the medical and pharmaceutical industry, as there is not enough research and information about this condition. I hope one day we can change that! I have healed and am healing, it took 6 months to heal from the worst of it, and after a year off B6 I feel mostly healed, I have my life back and I am happy again, this was hell, but there is hope! There is always hope! Do not give up!

Farida D.

Good evening everyone. 4 months ago I was not able to walk appropriately or stand up straight I felt pain all my body, diziness, weakness, extreme fatigue, tingling, burning, burning mouth syndrome, blurry vision, cramps, racing heart beat, itchy skin, inner vibrations, daily headaches, loss of appetite I lost a lot of weight Today I’m 4 months off b6 and all my symptoms are gone I gained back weight …I get a symptom from time to time but it is barely noticeable I’m 100% healed and I got my life back I feel my old energy is back I’m enjoying life again after losing hope that it will This b6T toxicity was a lesson for me and I learnt a lot from it. I will never ever touch a supplement without being really deficient in it and I will rely on food to get what my body needs I m tolerating food perfectly I tried potatoes (no reaction) vegetables soup (no reaction) chicken (no reaction ) but I prefer to stick up to the protocol for more time to complete the healing process I would like to thank everyone in this group for helping me in the nights when I thought I was going to die.Thank you Jeff thank you Daniella thank you Beth for heping us god bless you ❤️

Jennifer O.

Sorry for long post, but it’s a positive one! Just a positive note for those with vision issues: I think I am finally seeing improvements with my vision issues! I am six months off supplements. I have vision, proprioceptive, and autonomic issues along with internal vibrations and tingling still. My vision was my worst problem because it affected me mentally and was a huge source of anxiety. I had double vision in both eyes in my distance vision, which affected me all day long. I purchased prism glasses to wear over my contacts to help with driving, and that at least kept me going. I visited my ophthalmologist who specializes in double vision/diplopia about 3 weeks ago, and he said I have improved 50 percent since I last saw him (when I was right off supplements.) I attribute this to following the protocol very strictly. He doesn’t buy the b6 theory really (my internist did, however) but he said keep doing what I’m doing.I asked a lot of questions at my appt about the affected nerves and found my problems are associated with the sixth cranial nerve. You didn’t notice this in my appearance at all, but it made for blurry vision day and night, even with my prescription contacts in. Distance images would duplicate side by side. When I left the doctor, I started studying this nerve and it’s a very long cranial nerve. Any problems along the pathway can create vision issues. There are simple exercises online to help “wake-up” these muscles. I also did neck exercises. My neck/back/shoulders have been flared with b6 and anxiety created more tension in these areas also. I have worked out with a personal trainer for almost ten years, but the neck is just not something you focus on. And it is obviously a nerve hub. I did simple stretching exercises and also started sleeping on a heating pad that rested on the back of my neck and head. The only other thing was try to stay on my feet more to continue working on blood volume and blood flow as much as possible. I found that on days I worked out really hard, I would want to sit more because it took it out of me. The next couple of days I would be really flared. I changed to light work-outs and just stayed on my feet more during the day. I took frequent stretching and walking breaks in between desk work. I work from home so this is manageable. So–anyway–all this to say I had my best vision week ever this week! I believe the nerves are actually healing. I have not had a single week since this b6 mess started where my vision was perfect all day and I have now had 7 days in a row. I felt like my old self for the first time in six months. My “on the boat” sensations are still there, but better also. Twitching and vibrations are still there, but those are improving, as well. I was able to get some uninterrupted sleep this week, also. Don’t give up hope and stay the course with the protocol!

Julie S.

Hi All – I am just coming back to this group to offer hope to you all! I became very sick with Vitamin B6 Toxicity about 4 and 1/2 years ago and thankfully, I found this group back then. My worst symptoms involved my autonomic nervous system…My blood pressure was erratic, I lost over 30 pounds in a short period of time because of severe digestive issues, I had horrible tinnitus, I had internal trembling that lasted for several months and extreme insomnia issues. I also had vision issues and other things that went away faster than other issues. I literally thought I was going to die and that my life as I knew it was over. I had gone from a person that could hike 3-5 miles several days a week, to a person who couldn’t sit up without dizziness and could barely walk from the couch or bed to the bathroom. My muscles were decimated. I had numbness in my hands and feet in the beginning but those symptoms resolved very quickly. The process my body went through after stopping the vitamin felt like what I think a drug withdrawal might feel like. If you read my old posts, you can see my other comments. I eventually had to leave the group because I knew that in order to heal mentally from this ordeal, I needed a break from seeing the pain others were going through.

To give you hope, I can give you a rough guideline of my healing:Internal trembling – took several months to go away.

Insomnia – was horrendous for the first 6 months and literally it took about 2 years for my sleep to return to normal. Insomnia was the absolutely worst symptom I had as you can’t heal when your body won’t let you sleep.

Muscle Strength – It took me 6 months to rebuild my basic strength. I literally had to start very slow and get up every 15 minutes or so and walk around my kitchen or down the hall, etc. That progressed to longer walks and eventually I could walk again without feeling like I was going to faint.

Exercise – As noted, you have to exercise the excess B6 out of your body. I eventually got to the point where walking did not bring on B6 symptoms anymore…I think the walking got the B6 out of the muscles in my lower body only. Every time, I tried to exercise my upper body, I would feel sick again for several days. Ultimately, I chose to do minimal upper body work for a while because I needed a break from the symptoms. About 1 1/2 years into the healing, I added the upper body exercises back in. My symptoms were much less debilitating at this point. It took quite a while to get the B6 out of my upper body, I don’t know why I’d flare after those exercises but I did.

Something else that happened while I was going through this is that my Thyroid went wonky. Three months prior to discovering I had B6 Toxicity, my TSH was on the Hypothyroid side (sluggish thyroid). When my husband was demanding that my doctor keep looking at my thyroid for issues, it was discovered that I had Hashimoto’s Disease. The problem was that I was not in the typical Hypothyroid state but my body had swung to the Hyperthyroid state. I believe that the severity of some of my symptoms was exacerbated by being Hyperthyroid while I was going through the B6 removal stage. I also had to go on anti-thyroid medication to slow my thyroid down for 2 years. My thyroid is now stable and with dietary changes, I hope that I’m able to keep it that way.

Sorry this is so long but one last note…I feel like my old self again. The only time in the past 2 1/2 years that I’ve felt nerve symptoms is when I have had to go on an antibiotic. It wasn’t CIPRO but antibiotics do something to my nerves and I feel weird twinges in my body for about 2 weeks after taking them. I took CIPRO 1 year prior to the start of all my symptoms and I truly believe it set my body up for the B6 toxicity. I have great doctors now who believe my story. I often tell my husband that I’d like to revisit the doctors who made fun of me and told me that a vitamin couldn’t poison my body. I’d like to have them see that the old me is back and strong as ever and that I was completely insulted by their rude and condescending behavior. I posted a recent picture of me. I would say that during the last year, I have felt the strongest. Everything up until that point, I was rebuilding stamina. Now, I feel like my old self again.

Kelela P.

My story begins 2012ish with weight loss. I started drinking water flavor drops, 0 calorie sparkling water, and electrolyte drinks, while experimenting with fasting. I assumed that I would pee out any excess vitamins. Some of the drink flavors had very large doses of b vitamins. I also tried various supplements over the years, some multivitamins that had b6, some magnesium that had b6. And I began lifting weights to build muscle and improve my metabolism, so lots of chicken, lean beef, and lean pork providing b6 naturally. My first symptom was maybe 2015-2016ish with fidgeting while watching TV at night. After a several months, I realized it was because my feet were warm, so I would get up and rinse them off in cool water. Or, I would lower my entire body temperature by removing blankets or clothes, until my feet cooled down too. After probably a year of that, my feet started getting much more noticeably hot and red, only at night, usually after dinner. But fairly infrequent. During 2017-2019 I also got a professional certification, planned my wedding, planned my honeymoon. I developed severe IBS, a colonoscopy diagnosed me with autoimmune lymphocytic colitis. I finally controlled that by removing dairy. So money and time constraints kept me from pursuing the feet symptoms. As feet flares became more often, I asked all my friends, I asked two primary doctors, and two gynecologists. None of them had any idea what would cause feet flushing. It was not painful, just uncomfortable, so the doctors said it was nothing to worry about. I did have my routine physical exams, routine bloodwork, and routine well woman exams. I also tried stopping alcohol, stopping caffeine, and stopping various supplements, but nothing conclusive helped. Internet searches came up with “peripheral neuropathy, no cure”.In 2020 I also got diagnosed with autoimmune hashimotos thyroid disease. Though looking back at blood work I had probably had that for several years, but no doctor thought it was worth mention until 2020. But lab tests going back many years showed antibodies. As time went on, the flushing, heat, and redness in my feet got more frequent. I eventually bought ice socks off of Amazon to keep in my freezer, because that would usually stop a flare quickly. In early 2020, yet again tried to search the internet with any terms I could think of for feet flushing or hot feet at night. I finally found a group talking about erythromelalgia. That sounded like exactly what was going on with me. From that group, I learned that my problem could be due to a genetic mutation, or it could be secondary to other more serious conditions like lupus. I didn’t take action as we were all in lockdown and scared to even go to a doctor. Over that year my feet became less responsive to even the ice socks. Summer 2020 brought more setbacks as I caught Covid from an overdue eye exam. I developed daily nerve pain headaches post Covid. At first I thought it was neck tension but a couple months of chiropractor didn’t help, and then my primary dr gave me amitriptyline which helped. I also randomly developed bad face rosacea in December 2020. Once headaches controlled, and after vaccination in 2021 made me more confident to leave home, I pushed my primary dr to refer me to a cardiologist for feet flushing. It was so hard for doctors to take me seriously as the flushing never happened while at their office. I took tons of pics. The excellent cardiologist agreed I have erythromelalgia, but he also highly recommended I see a rheumatologist to rule out lupus. I cried from relief that day because someone finally took me seriously and I wasn’t crazy or just unlucky to be aging faster than normal. My rheumatologist ran a bunch of blood tests and immediately caught the b6 toxicity. That night I threw out all drinks and supplements with b6, but my doctors all told me not to worry about b6 in foods. I saw some improvements immediately with flares becoming less intense and less frequent. Also the skin of my feet was less blotchy. I eventually realized the nutritional yeast that I used for non dairy cheese flavor also has b6 because it’s fortified. Over a couple months I ate through the last of the chicken, pork, and beef in our huge freezer, and also cut avocado and big spinach salads. I tested new recipes with tilapia, shrimp, and lamb to get accustomed to lower b6 protein meals. November 2021 I finally began eating only RDA b6 daily.

Kiley T.

Here to give some hope and encouragement! I am now on week 24 (6 months out) since becoming toxic with b6! I am 100% healed and restored! I feel like I had every symptom in this group and wasn’t sure if I’d ever be back to normal. I continue to stay hydrated with at least 2 liters of liquids a day and I do watch my b6 intake for the most part still. To those who are struggling – stay on the protocol, exercise and encourage your muscles to burn when working out, and stay hydrated! You WILL get better! The healing process definitely takes time and you’ll have good days and bad days, but it WILL happen! Keep fighting the good fight, you all GOT THIS! A huge thank you to Beth and Cyndi for their guidance through my toughest days! This group has been a bright light in the darkness ?? God bless!

Linda J.

Yep most discount it. For me it was extremely obvious because I was completely fine before taking B6, and now that I have stopped for 7 months I’m almost back to 100% B6 is no joke! It will mess you up. Luckily I got blood work while still taking supplements so my levels were really high and my doctor officially diagnosed me with B6 toxicity. Had it not happened that way. If I had taken a multivitamin for years or had stopped supplements 1-2 weeks before blood work was done……???? I’m sure it would be a whole other ball game and I would not have been properly diagnosed. So I think it’s important that you think about when symptoms started? Did it start with B6 supplements? Are you having all the symptoms you see on this page? Basically do you think it is B6T?

Carla B.

I felt OK after about 18 months. By that time, I had my daily life back. Full healing took a bit more than 2 years.

Scott G.

This group and its members helped me navigate a extremely scary part of my life. Im happy to say that little by little i got better! When i hit 18 months out i had reached 100% relief. Thank you so much for all your collaborative wisdom and encouragement! Im uncertain on how i would be feeling today if i didnt find you!

Sandy W.

Two years ago, my neurologist told me my neuropathy (which went undiagnosed by my primary care physician for five+ years) would probably not progress any further if I stopped taking B6 supplements and cut back on foods high in B6; but the chance of it getting better was slim. Even if it got no worse, I didn’t want to live like that with brain fog, vertigo, lower extremity numbness and tingling, cramping all night, little sleep, anxiety, etc. etc. Thank goodness for this group. I have been on the hydration and diet protocol for about four months. My symptoms are so much better. My sleep the last few weeks has been better than I can remember, no cramping, numbness/tingling is less, and my mental wellbeing is so much better. I suddenly realized my balance seemed better, and last night for the first time in years, I was able to stand on one leg. That may sound insignificant, but it was huge for me. I know I will still have bad days, but this group and following the protocol has given me hope.

Robert C.

Today is 90 days on protocol. Let me list the improvements I’ve seen so far:

1. Migraines have stopped 100%. Don’t even get headaches anymore. Those migraines were horrible, painful & would lay me out for 10-12 hrs every time they struck. Like someone had a jackhammer in my brain. They stopped pretty quick I believe the first month.

2. Tinnitus was very loud. Mostly went away. Still comes back occassionally at a super low volume. Like 80% better.

3. Photosensitivity is mostly gone. Had to wear sunglasses outside even on cloudy days. Had to wear bluelight blockers inside. Had to sit back from screens really far. Was able to lay out in the sun 4 days in a row last week with no sunglasses. Felt awesome. Looking at screens is similar. Light no longer bothers me. Occassionally still comes back but feels like 80% better.

4. Visual snow. This was really horrible. I’d go grocery shopping & feel drunk cause my whole vision field was filled with static. Was very hard to see clear. That visual snow has changed over now to mostly just brain fog in the mornings. That gets better later in the day. It’s still pretty constant most days but intensity is way less. Would say around 40-50% better.

5. Insomnia. First month was sleeping 2-3 hrs at most. Second month got to around 4-5 hrs. Now starting month 4 I’m around 6 hrs. Sometimes less, sometimes more. Still feel brain dead in the mornings. If I wake up too early also very hard to go back to sleep. Would say around 50% better. But compared to month 1… it’s way better. Month 1 was a nightmare for sleep.

6. Energy. This is hard to rate. I seem to have way more stamina but feel weaker at the same time. Like I can move around a lot more, but I feel weak in my body. Would say energy is 30-40% better. But strength is possibly worse. Likely due to muscle atrophy from eating & sleep problems.

7. Weird blood sugar drops / reactive hypoglycemia. I have not experienced this in about 2 weeks. So around the 2 1/2 month mark it seems to have stopped. It could come back but right now it’s 100% better.

8. Raging thirst. Also, around the 2 1/2 month mark I no longer feel like I’ll die w/out water. I still follow the protocol with water & electroyltes. But early on it felt involuntary. I was always super thirsty. Now I’m not really thirsty. But drink cause I know I need too. This is also 100% better I’d say.

9. Body aches. I was getting horrible neck, hip & back pain early on.  Especially before bed. The neck pain I haven’t had in a while. The hip pain seems to have stopped a month ago. I still get some back pain but even that is much better. Around 60-70% better. I do take glucosamine though & hylauronic acid.

So really, LOTS of things have improved quite dramatically. I’m not perfect. Not “fully” healed. I was doing 50-100mg B6 for 6 yrs and even injecting it that last yr. But compared to where I was… it’s a HUGE difference. My main issues now are just the brain fog, weakness & not sleeping perfect. But the protocol clearly works. Managing expectations is hard. Being patient early on when you feel like death is supremely difficult. Things can always turn south at any moment. But now I look forward to 6 months, 9 months & 12 months… with a sense of optimism I haven’t felt in a long time. And for that I really am greatful! Thank you Beth Smarzik & all members of this group. I will do a 6 month update on Nov 20th. =]

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