I am a 40 year old male with recently diagnosed, but chronic, severe thiamine deficiency (plasma thiamine <6 nmol/L September 2025) – Wernicke’s Encephalitis. I have all of the classic symptoms like nystagmus, ataxia, and cognitive issues, along with a long list of other symptoms that have accrued over time. I have had a horrible diet since childhood, consisting mainly of fast food, and in my twenties, I drank a fair amount of alcohol. I have also had several bouts of food poisoning, including a c diff infection in August 2025. Antibiotics have been a mainstay since childhood. Once thiamine deficiency was recognized, I was given IM injections and told to supplement orally. I feel worse. Something is missing and I need help. Below is my case story. If there is anyone out there that can help, please comment.
Childhood Marked By Poor Diet, Infections, and Failure to Gain Weight
My youth was filled with many upper respiratory and ear infections that I was giving antibiotics for. I had a “fast metabolism” and could never manage to gain weight, no matter how much I ate. I never wanted to eat the healthy food that my mother would cook and always wanted candy and junk food. I would eat things like lucky charms, brown sugar and apple cinnamon instant oatmeal. By the time I reached high school, I was consuming fast food quite often, and then when I got into sports and weight lifting, I was consuming sugar-filled meal replacements, and protein supplements, and microwave meals.
At 16, I developed a rash on my hands every winter. It would crack and bleed and my joints became stiff. I later learned that this was eczema or psoriasis. I was given a corticosteroid cream. After high school, the rash continued to get worse, and never healed. When I was about 21 years old my hands were so stiff that I couldn’t bend my fingers. They were completely cracked and bleeding all over.
Along with this, my ears, and all of the cartilage in my body, turned solid. I wasn’t even able to flex my ears or ear lobe and every time breathed in it felt like I was being stabbed in my left lung. The doctor diagnosed me with relapsing polychondritis, pleurisy, and psoriasis. High dose corticosteroids and corticosteroid creams were prescribed.
The Poor Diet Continues: Heart Symptoms Emerge
In my twenties, I lived off of cheesesteak sandwiches, pizza pockets, French fries, and soft drinks. I only at couple meals a day and usually skipped breakfast. I worked, partied and fluctuated being not enough eating too much. I lost a bunch of weight and began losing my hair.
In my late twenties, I got a much better job with a lot more responsibility and a lot of stress but my diet was still horrible. I would skip breakfast and then gorge of double orders of fast food meals for lunch. I began gaining weight but I was going to the gym so I’d managed to build an unhealthy muscular physique.
At some point, I began having episodes where I would have my heart racing, chest pain, and other symptoms that felt like I was having a heart attack. Hospital visits concluded that these episodes were panic attacks, however, they did note that my cholesterol, and triglycerides were high.
A Healthier Diet But More Alcohol and More Unexplained Symptoms
In my thirties, I made some changes to my diet. I began eating a healthy breakfast but was still eating out for lunch and having large portions. I added in raw vegetable powders and multiple organ capsules to diet. I also began drinking more alcohol.
My psoriasis flared. I developed random internal vibration episodes and very subtle full body tremors, as well as being jolted awake in the middle of the night. I decided at this point it was time for a change. I tried to eliminate dairy, grains and gluten, chocolate, sugar with the hope that this would resolve my inflammatory issues. Unfortunately, it made matters worse, likely at least partially due to the alcohol consumption.
Magnesium Oxide, a Benzodiazepine and an SSRI
Within about a year, I had lost a significant amount of weight, ended up with significant sleep issues, increased anxiety, and had the worst brain fog of my life. I could not function properly at work and was losing my hair in significant amounts. I visited my doctor who was very well meaning and spent quite a bit of time trying to help. He found that my magnesium was low (1.6), so he gave me magnesium oxide as a prescription. This caused severe loose bowels and just made things worse.
He also told me that I had a genetic predisposition for high adrenaline, and proceeded to give me propranolol to calm that down, as well as a benzodiazepine and SSRI that would “help with my insomnia”. I was not depressed. I just couldn’t sleep and felt like I was in high gear all the time. Instead of doing research and because I trusted this doctor, I took the medication as he advised.
The SSRI made me want to crawl out of my skin, but the benzo allowed me to sleep 6-7 hours, stopped the tremors and being jolted awake. We went through three different SSRI’s until settling on Lexapro. I was on these for about a year until I actually did some research and learned how they were harming my body. I then decided to ween myself off. That process was brutal, with the feeling of brain zaps, worse tremors than before, and intense insomnia.
Brain Fog and Dizziness Worsen
Around this time, a friend and I started a snow removal company. The job was extremely physically demanding. I was out for 24+ hours at a time in freezing temperatures, not only in the truck, but also out shoveling and carrying around a 50lb buckets of salt to spread. I didn’t eat much while out, and lived off coffee, milk and orange juice. We also started going out on the road for weeks at a time, staying in hotels and working 12-16 hour days in food factories, repairing their equipment, and starving myself. During this time, I experienced some of the worst brain fog I had ever felt. I couldn’t make sense of anything.
In 2016, I discovered the Ray Peat way of living. I eliminated a number of foods from my diet and began consuming a lot of coconut oil, ice cream, milk, orange juice, but at a significant calorie deficit. The diet made me weaker and I wasn’t able to keep up with the business. In 2017, I got a part time job at a grocery store, thinking it would be easier physically but beginning work at 4 am became problematic. The brain fog continued to worsen.
First Bout of Food Poisoning: Cipro and Flagyl Prescribed
Sometime between 2018-2019 I got campylobacter food poisoning from an undercooked burger. I was given Cipro and Flagyl. The Cipro caused joint inflammation and so they advised to discontinue it and finish the Flagyl. After these meds, I had a horrible time concentrating and completing department order at work. I was spaced out while driving, which even led to a couple auto accidents, more frequent tremors that even my girlfriend noticed, and I would randomly wake up with full on shaking, followed by nausea and vomiting. My magnesium still continued at the very bottom of the range, so I started using ReMag in an attempt to move the needle, which mostly just put me in the bathroom. I also started taking taurine, niacinamide, and thiamine HCl. My cholesterol and triglycerides were still elevated.
In 2020, I worked through COVID, as we were essential workers. Luckily, I did not get COVID at this point. I continued taking vitamins, taurine, magnesium, and began desiccated thyroid. I also ate bags of dried organic apricots and mangoes daily. They seemed to help with energy levels.
First COVID Infection and New Onset Food Allergies
In 2021, I began a new job and got COVID for the first time. At that time, I consuming a daily smoothie with full packs of frozen 365 organic strawberries, mangoes, dark sweet cherries, peaches, a cup of orange juice, and Mt. Capra casein protein. The casein protein exacerbated the brain fog. When I eliminated it, the brain fog wasn’t as bad. Odd because I was able to drink milk in the past, just not consume whey protein.
COVID hit hard and took me out for almost a month. I had fever, low O2, and high heart rate. I took aspirin every 4 hours and this seemed to lessen the symptoms pretty quickly. I spent most of my days in bed, eating scrambled eggs, butternut squash soup, chicken soup, and mozzarella cheese. Toward the end of the COVID infection, I developed excruciating pain in my left thigh. I thought it was a blood clot from lying in bed for too long, but an ultrasound ruled that out. The pain and COVID-related shortness of breath remained for about a month. After that everything was back to normal, except now I had food allergies. I could no longer eat the butternut squash soup nor could I eat mozzarella, or the sweet potatoes or French onion soup I would eat prior to getting sick.
Few Good Years with Thiamax Despite Another COVID Infection
Late 2021, I began taking Thiamax to replace the thiamine HCl I had been taking. When I began, I had a little extra brain fog, but I attributed it to the COVID. I also added methylene blue to the mason jar of orange juice I would take with me to work to sip on, along with great lakes collagen. Things started looking up. The brain fog started subsiding and I was able to function at work.
I continued to have the startle awake reactions and tremors. These mostly would happen if I tried to take a nap during the day. Any time I would start to fall asleep, I would be immediately jolted awake and then experience a full body vibrations sensation. This happened every time I started to nod off. I was thinking maybe it was due to the thyroid, but I was still at the very bottom of the level for magnesium when tested.
2022 Was fairly uneventful year, although I did catch COVID again. This time it was very mild and I was only out of work for less than a week. I had all sorts of allergies to food, but the brain fog seemed much improved. The startle awake and vibrations remained and my magnesium was still low.
In 2023, I was in ER early in the year with odd abdominal and back pain, nausea. I thought it could be food poisoning from daily Uber eats lunch orders. Some blood was found in urine. They said it was gastritis and to take Pepcid. The rest of the year was uneventful. I was still taking Thiamax and desiccated thyroid daily. My energy levels were better. I had less brain fog and my body temperature improved. Magnesium was still borderline low but calcium on many blood tests above 10.
Food Poisoning Again and More Antibiotics
Towards the end of October 2024, I got food poisoning again. This time it was salmonella. I had non-stop vomiting and loose bowels for over a week. I was prescribed Flagyl, but did not take it, and Cipro, which I took for 7 days, with gradually worsening joint pain and inflammation. Cipro was discontinued and replaced with Cefixime. A stool test one month later revealed that salmonella had colonized, and they would not give any additional antibiotics to help clear it up. From this point on into 2025, I never felt the same. I had also stopped the Thiamax and was only taking forefront health b-complex and forefront health desiccated thyroid. I was still borderline low magnesium.
The Downward Spiral
By early 2025, I had much worse brain fog, frequently lost train of thoughts, couldn’t concentrate at work, started getting odd reactions to ice cream, mashed potatoes and other foods. They would cause a full body itching, and internal vibrations when I would eat them. Constipation was the norm, and my doctor told me to take two magnesium oxide tablets a day to help, my gastroenterologist told me to take biscodyl daily to help. I started to have a constant feeling like my throat was inflamed.
In May, I was diagnosed with eosinophilic esophagitis. For the endoscopy, I was given propofol and fentanyl for anesthesia. It took over an hour to wake up from and the entire week following, I felt like I had just woke up from the anesthesia. A few weeks later, I was given high dose Omeprazole to correct the eosinophils. I was also advised to eliminate eggs, dairy, wheat, soy, fish, nuts, and corn from my diet.
In June, I received the results for the buccal swap Mitome profile. It showed 404% citrate synthase, normal Complex I, low-normal Complex II, low-normal Complex II-III, and low (24%) Complex IV.
I tried to start implementing the proposed protocol but it seemed to be causing more symptoms. I started tracking glucose, ketones and lactate daily per Chris Masterjohn’s recommendation. I was going out for daily walks and hitting around 8k steps.
A Tick Bite, More Antibiotics, and a C. Diff Infection
In July, I had a bullseye tick bite and the doctor prescribed doxycycline. The doxycycline causing worsening tremors and severe tinnitus, I stopped taking it, after which both began to subside. I was walking daily.
In early August of 2025, I went to the ER with nausea and vomiting. They sent me on my way after doing a CT with contrast and seeing inflammation of the stomach and intestines. They said it was the stomach flu and to stay hydrated. This persisted and worsened for a week and so I was admitted to the hospital. A stool test it was found that I had an active c.diff infection and was colonized with salmonella from the prior food poisoning. I was given ceftriaxone IV, and vancomycin oral.
In addition to the antibiotics, I was given IV’s with sodium chloride and lactated ringers and initially and I felt better. Then they switched over to D5NS, a saline solution that contains 5% dextrose and I felt worse again. Dextrose depletes thiamine and I was already malnourished and thiamine deficient. Nevertheless, within three days of my hospital admission, I was able to consume food by mouth again, around 2,100 calories per day consisting of burrito bowls for breakfast, lunch and dinner, that contained carnitas, rice, pinto beans. I walked the halls doing lunges and calf raises to stay as active as possible.
The morning I was to be discharged I was advised that my magnesium and potassium were both low and given two pills to correct those levels. Vitamin B1/thiamine was not checked. I was also given a 10 day dose of azithromycin.
Severe Thiamine Deficiency Lurking
At discharge, I felt very weak, had tingling and weakness in the legs and severe brain fog. That night at 6pm I took my dose of vancomycin, and my first dose of azithromycin. The next day, I awoke with severe digestive distress continuous diarrhea throughout the day. I returned to the emergency room feeling like I was dehydrated, but they stated that all of my levels were normal and I was discharged.
The following morning, I awoke again with severe digestive distress, and upon standing my heart rate spiked to over 160 beats per minute. I rushed to the kitchen and grabbed some Pedialyte, thinking it was just dehydration, but this made my heart rate beat faster and caused blurred vision. I thought I would faint and I felt an impending doom sensation like I was going to die.
I called 911, and medics arrived and proceeded to perform an EKG, which merely showed sinus tachycardia. They were unable to get my heart rate down in the ambulance, and upon arriving back to the emergency room, I was left to wait for 6 hours before I was able to get any fluids. When they attempted to draw my blood, my veins were flat and they weren’t able to get blood to flow into the vial. This would later become a trend, with blood vessels in the arms and hands constantly appearing shriveled and misshapen, and my mouth felt dry like sandpaper despite trying to drink water.
Oddly, my electrolytes all came back in normal range. My heart rate stayed around 110 to 120 beats per minute the entire wait even while seated in a wheelchair. When I was finally brought into the ER, I was given one large bag of sodium chloride administered rapidly. This initiated a weird sensation in my chest and uncontrollable coughing.
They took me for a CT scan with contrast, and then for a chest x-ray to check for fluid in my lungs, but found none. I was then given a bag of lactated ringers and my pulse began to normalize. During an orthostatic test, my pulse spiked over 100bpm upon standing. They gave me another bag of sodium chloride, performed another orthostatic test and my pulse remained under 100bpm. I was advised to discontinue the azithromycin, and my diagnosis was listed as severe dehydration.
After discharge, my legs were very weak and I had an odd internal vibration, buzzing sensation. My whole nervous system felt very irritated, worse than I ever experienced before. The nerves in my spine and lower back felt raw and like they were being poked. This and tremors, prevented sleeping. I also developed muffled hearing. I was switched from vancomycin to dificid 3 days later.
From that point on, I had worsening neurological symptoms, odd episodes of confusion while driving. I didn’t know where I was even though I was near home. If I looked in the mirror it felt like the room spun. I finished my round of dificid on September 1st.
Increased Need for Sodium and the Continued Downward Spiral
Since my hospital stay, I the only way to keep my heart rate somewhat normalized was to drink several electrolyte beverages or consume large amounts of salt throughout the day. On September 2nd, I developed severe neurological symptoms and diarrhea after consuming a large fruit smoothie.
I noticed that when I ate pulled pork, I would I had more energy and was in a better mood but developed reactions to the garlic and spices used in it. As a result, I switched to a more bland diet consisting mostly of a plain ground chuck, plain chicken with salt, and applesauce.
In mid-September, I added plain white rice to my bland diet with hope of adding more calories. I had lost over 40lbs at this point. The rice probably made matters worse. I developed episodes fuzzy vison. I saw floaters in my eyes, as if I was staring into a bright light. My hearing would go out and I would just have a loud ringing or buzzing in my ears. My pulse would spike to 150 or higher. I became dizzy and felt completely intoxicated, despite not drinking alcohol. Every muscle in my body twitches including my face muscles, and I’ve been told that my eyes will twitch when trying to look straight forward. This is triggered when exposed to heat, bright light, exercise, strong smells or any sort of stimulating experience.
Polyuria and More Thiamine Deficiency Symptoms
In late September, I was excreting around 2L of urine in a few hours despite normal consumption. I went to the ER for IV fluids and then again two days later after having that feeling of impending again. I had white rice for dinner.
I had an EKG, blood work, and was given a potassium in IV, as my potassium was low. They tried to discharge me, but I argued for admission. Nephrology and endocrinology performed a variety of tests. A 24 hour urine test measured 8 liters of urine despite consuming only 2 liters. After urine began to concentrate again, I was discharged. Upon discharge, when I attempted to stand my legs were so weak they almost collapsed beneath me. I felt numb from the waist down.
We Finally Tested Thiamine: Undetectable
That night, I went to a university hospital emergency room and during my 13 hour wait to get in, I desperately searched for answers. I chanced upon hormonesmatter.com and ordered the kindle version of Thiamine Deficiency Disease, Dysautonomia, and High Calorie Malnutrition and began to read. Once a bed was finally ready in the ER, I told them my story and they started running a number of labs.
I was seen by several doctors, neurologists, and a pulmonologist. They ran orthostatic vitals, several blood labs, and upon my doctor’s recommendation they admitted me for observation (he was leaving his practice that day). They did an MRI of my spine, took me for an EMG and nerve conduction tests. In the MRI they noted some slight degeneration in the spine, and red marrow reconversion throughout. EMG and nerve conduction tests were mostly normal, however, they noticed some diminished sensation in my left lower extremities and toes and a mild gait disturbance.
I requested a vitamin B1 plasma test, along with copper, iron, zinc, and others. I was kept for observation for a few days and given IV fluids, which kept pulse fairly normal. The thiamine test had not returned by the time of discharge.
A week later when the result came back, it was <6 nmol/L, which is basically undetectable.
I was extremely excited, finally getting some answers as to why all of these things were happening. The doctor prescribed intramuscular thiamine 500mg in total, to be given daily for a week, followed by 400mg thiamine HCl orally and IM shots every three days for the next two weeks. The first shots were that very night.
Thiamine Repletion Has Been Brutal
After my first dose, I slept well for the first time in months but the next morning when I attempted to stand, my pulse spiked up but my blood pressure tanked to 89/62. I could no longer walk for more than a short distance. I tried to continue my regular 8-10k steps daily, but after a couple hundred steps, my body would completely shut down. My vision became fuzzy, I saw floaters or like flashing lights and my pulse would skyrocket even though it was already high. The Holter monitor recorded sinus tachycardia and some SVT’s. My legs were so weak, they tremor and felt like they were going to give out beneath me and I felt like I could not get enough air in.
This entire time I was getting the thiamine shots, I struggled to consume enough calories on a daily basis. Surely, eating only 900-1000 calories didn’t help my situation, I just couldn’t eat any more. When the shots were stopped in November, my health declined further. At this point that, I began significantly increasing my dose orally and adding other forms of thiamine. This made everything significantly worse.
By mid-November, at this time I was getting around 300mg of magnesium malate per day, taking a daily multivitamin (Seeking Health One Chewable), as well as Forefront health thyroid B-complex), and only able to eat boiled chicken and applesauce. Anything else made my GI symptoms unbearable and caused worsening tremors and internal vibrations. Per my records, here is the dosing I followed.
- Week 1 (first 5 days): 500mg IM thiamine HCl shots, once per day.
- Days 6 & 7 picking up with 200mg of thiamine HCl by mouth twice per day for 400mg.
- Week 2: 200mg thiamine HCl by mouth twice per day for 400mg, with one 400mg IM shot on Thursday.
- Week 3: 300mg thiamine HCl, plus 150mg benfotiamine by mouth twice per day, with one 400mg intramuscular thiamine HCl shot on Monday and 400mg IM thiamine HCl shot on Thursday.
- Week 4: 300mg thiamine HCl plus 300mg benfotiamine by mouth twice per day, with one 400mg IM thiamine shot on Thursday.
- Week 5: 300mg thiamine HCl, plus 300mg benfotiamine by mouth twice per day, no intramuscular shots.
- Week 6: 300mg thiamine HCl, plus 300mg benfotiamine by mouth twice per day, no IM shots. Wednesday and Thursday attempted to add morning and afternoon dose of Thiamega and cut benfotiamine back to 150mg and thiamine HCl back to 100mg. This led to extreme anxiety, significant increase in pulse and panic attacks.
- Week 7: same as above but have begun having random panic attacks, adrenaline surges, pulse spiking to 160bpm randomly. I can’t sleep at all (last week and the weeks before I was getting 7 to 8 hours per night typically). Now I wake up at 2am and feel air hunger and have random surges in pulse, spasms and closing of my esophagus. I went to the ER yesterday and they found nothing wrong. All electrolytes were on the lower end of normal. I have tremors, dysautonomia and POTS symptoms again and I am losing weight again.”
The Hell Continues: Confusion and Food Intolerances
Thinking I was taking too much thiamine, I reduced intake to just 150mg benfotiamine and 350mg thiamine HCl for a couple days. This was right before Thanksgiving. My neurological symptoms were getting worse, and now I was experiencing dizziness, cognitive decline and new vision problems, but the shortness of breath had begun to subside.
I had an appointment to see a nutritionist. I showed up at the appointment and had this new surge of confusion, as well as a significant increase in pulse while walking in, my body felt ice cold even inside the building.
After going over all of the foods that I was having issues with and what my allergist told me to avoid, we were left with almost nothing. She said, at this point you’re going to just have to try to start eating anything you possibly can to add more calories, because you’re lucky if you’re getting 600 calories per day.
As I walked out of the building from this appointment, I experienced the worst brain fog that I had experienced to date. I walked around the entire parking lot but I could not remember where I parked my car. My pulse extremely high and I was dizzy. I felt like I was in a dream and I could not make sense of anything that was going on around me. I eventually found my car about 20 minutes later.
Since I was struggling to come up with ideas of what I could eat and unable to tolerate most of the things that I tried at home, I decided to go back to trying Chipotle. It turns out, I can tolerate Chipotle carnitas. So now, I eat two chipotle bowls with double meat, double brown rice and light beans. It’s nowhere near an ideal healthy meal but at least I can eat – sort of. I now get migraines a few hours after eating and internal vibrations and tremors.
I started taking Zyrtec daily, because I tested positive for a rice allergy on both blood and skin tests. I continue to eat Chipotle and use Zyrtec to manage the allergic reactions. I also take quercetin, a mast cell stabilizing supplement, and butyrate supplement.
Another Medical Procedure With Anesthesia
Mid December, I had a recommended colonoscopy and endoscopy. Given my problems with anesthesia, I was worried. The prep process was very rough on my body and caused even more palpitations and higher heart rate. I don’t think the thiamine I was taking was absorbed and not eating made things worse. Surprisingly, coming out anesthesia was okay, but the first time I tried to drive, I had a major energy crash. I felt like everything was moving in slow motion and my brain was running out of energy would shut down. My vision was fuzzy, my hearing went out and I just had a loud ringing as my pulse spiked up. I felt like I was completely intoxicated. Every muscle in my body started twitching, tremoring and then lost strength. I messaged my neurologist and they responded that it sounds like a panic attack, and I should take some Tylenol for my intense migraine headaches. I was not a panic attack.
I have been unable to drive since. Every time I am in the car with someone going to an appointment, all of the visual stimulation from trying to process cars and what’s going on the road and around me, causes what feels like a mental shutdown. I also feel like I’m intoxicated constantly, especially when in the car, or looking into a mirror. It has gotten to the point where it is hard for me to focus on things mentally, or make sense of things I read or watch. I’m not sure if this is all due to the B1 deficiency or if it’s partially due to the c diff infection and all of the antibiotics.
My Health Is Failing and I Don’t Know What to Do
I am struggling daily to maintain a proper electrolyte balance. If I sip a 33oz coconut water throughout the day and add a little salt here and there, in addition to the sodium I’m getting from food, I end up feeling dizzier, like my blood pressure is too low. If I take 450 mg of sucrosomial magnesium, I still have full body tremors, muscle twitching and a migraine. If I increase the magnesium the twitching subsides, but dizziness increases and I feel faint. I’ve even tried using 350mg sucrosomial magnesium with 144mg of magnesium l-threonate (hoping this would help with brain symptoms.
I’ve tried to introduce healthier foods, such as the farm eggs that I used to eat every morning, ground lamb, fresh-squeezed orange juice, but my body just seems to reject these. So I am left with the Chipotle, with double carnitas, double brown rice, and light pinto beans. I realize these meals are not the healthiest options and probably not doing me any favors with the brain fog, migraines and other symptoms but I don’t know what else to do. Are my continuing symptoms all related to the thiamine deficiency, my diet or something else?
Adding More Supplements
On December 19th, I began taking Lipothiamine. I began with 12.5 mg once at breakfast, along with 150mg benfotiamine, and 250mg thiamine HCl. For lunch, 150mg benfotiamine and 100mg thiamine HCl. That day I had much more severe dizziness, my head felt like it was in a vice, and I was experiencing lapses in time. I went to the ER thinking maybe it was an electrolyte issue. They said electrolytes looked fine. Potassium and sodium were at the very low end of normal, but they were not concerned. They did a CT of my brain (again) and did not find any irregularities. I was offered a migraine cocktail consisting of antihistamines and morphine or something like that, and they offered to keep me for 24 hour observation. Since there was nothing else they could do for me, so I declined. I was given a bag of sodium chloride and discharged.
On the 20th, I increased to 12.5 mg with breakfast (plus 150mg before/250mg HCl), and then 12.5 mg with lunch (plus 150mg benfo/100mg HCL. I held that dose until December 23rd, when I was able to resume the intramuscular shots.
After the intramuscular shots, I felt like I had more energy, I was much more social, and felt like symptoms had improved slightly. The next day, I increased my Lipothiamine dose to 25mg with breakfast, keeping the same benfo and HCl doses as the prior days. All of the symptoms got much worse. I felt a significant increase in the dizziness, heart rate picked up, it felt like I was walking through a dream.
On December 25th I added another 25mg of Lipothiamine with lunch and kept the bento and thiamine HCl the same (so 25mg lipothiamine with breakfast and 25mg with lunch). Symptoms continued to worsen. I also began taking CoQ10 ubiquinol (50mg with breakfast and 50mg with lunch), mitosynergy copper (split .5mg with breakfast and .5mg with lunch), black seed oil/curcumin (one capsule with breakfast, one with lunch). Lactoferrin (one capsule with breakfast, one with lunch), Jarrow reduced glutathione (one capsule before breakfast, one before bed), liposomal vitamin C (twice a day), creatine (4 split doses 3g total per day),
Elite IgG ImmunoLin blend for gut healing (one scoop before breakfast), ProButyrate (2 capsules before breakfast, two before dinner), and Hesperidin capsules (one capsule with breakfast to help with neuroinflammation).
From December 25th on I have been following the same protocol, with everything listed above, with the exception of adding Thiavite to my morning doses which adds all cofactors and increases TTFD by 15mg in the morning dose.
Reasoning Behind the Recent Supplements
I added the lactoferrin and black seed oil/curcumin as part of my Mitome protocol. When I did the Mitome test back in May 2025, it showed complex IV was at 24% and noted that I should be supplementing with heme iron, or if my ferritin levels were high that I should utilize whey protein/lactoferrin, with black seed oil and curcumin to lower inflammation so that trapped iron was released from ferritin. It also noted that I should be using copper to support complex IV cytochrome C oxidase enzyme. For the low complex II and II-III it noted coq10. I’ve added all of these in, and hope that if what I’m also dealing with an addition to a thiamine deficiency, is also mitochondrial dysfunction, that this will help to support my mitochondria and correct all of the issues that I’m having. In recent lab tests my copper was on the low end of normal, but so was ceruloplasmin, with a free copper over 15. In my iron labs, my iron was at the low end of normal, with transferrin below the normal range, and ferritin at the top of the normal range, with saturation at around 30%.
On December 31st, I did another 400mg of thiamine HCl intramuscular shots, and again the first day I felt more social and talkative, but since the 3rd I’ve been feeling very off. Migraines are back even worse, a sensation of extreme nervous system irritation and randomly losing hearing in my right ear. I feel like I still cannot get my electrolytes managed properly, and I’m left feeling like I’m never going to get back to my old self. My pulse was somewhat normalized in the morning before eating breakfast and at night, now it’s elevated again.
Where I Am Now
The last few days I’ve also had a lot of digestive upset. I’m getting more hives like reactions to all foods. Overall, I am very fatigued and feel like I’m walking through a dream. I don’t know how to continue supporting my body without causing more inflammation. I don’t know if this is all related to the B1 deficiency or if this is a much larger issue that I need to be working on.
I’m trying to walk around as much as possible so that my body will stimulate more mitochondrial biogenesis. I would to get to the point where I can drive again but my legs feel weak and I have very low energy levels. My doctors are pushing for me to do a stress test in one week, and if all goes well, they would like me to start physical therapy and occupational therapy. At this point, I feel like that is just going to make things worse, because every time I try to do anything physically or mentally taxing, I crash and then the next few days are miserable.
My time is also running out for being able to return to work. If I’m not able to return in the next 4 weeks, my position will be opened up. I’ve even tried to spend time with family, and simply holding a conversation causes the over stimulation reaction where I start to feel faint, my pulse rises, and my vision gets fuzzy, etc.
Please help me get my life back. I want nothing more than to return to work, spend time with family, and friends and help others who are in similar situations.
Post Script: I just learned that the IM thiamine shots I was prescribed contain 400 mcg/mL of aluminum each. I have been injected with a neurotoxin for months now. I have not been able to find a clean IM. If anyone knows of an IM thiamine without aluminum, please let me know.
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