CJD, thiamine, B12

Creutzfeldt Jakob Disease, Thiamine, or B12 Deficiency?

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My husband is a 42 year old man who is suffering from what I suspect is severe thiamine and B12 deficiency that has manifested as hallucinations, dizziness and ataxia, progressive immobility, nystagmus and an upward gaze, memory problems, tics, light sensitivity, and incontinence. In April he was hospitalized for a week. While there, an MRI showed that he had restricted diffusion in the basal ganglia and thalamus, with possible mild right lentiform enhancement. He was diagnosed with Creutzfeldt Jakob Disease (CJD), also known as mad cow disease.

Even though they kept telling me that there was a broad range of things that could cause these MRI readings, including metabolic disorders, the doctors believed he had CJD and have focused only on this diagnosis. In the report, they said that they ruled everything that could mimic CJD out, but later on, the doctor admitted that they didn’t check for other mimics after seeing the MRI. While in the hospital, he was medicated heavily and deteriorated significantly.

Upon learning about thiamine deficiency, and Wernicke’s encephalopathy, I managed to get IV thiamine for him twice and he improved each time, but doctors will not provide them regularly and we cannot afford them on our own. Since symptoms of Wernicke’s and vitamin B12 deficiency can mirror CJD and since he responded positively to both vitamins, I believe he would benefit from IV therapies.

History Of Dietary Malnutrition

My husband has been in the navy for 17 years, on three different ships from 2007 until early 2018 with deployments to the Middle East, Europe, and Asia. He was not in Europe in the 90s. He was on a ship that visited the Horn of Africa. For some of the deployments, he didn’t go out in town. He stayed on base.

He has a history of fast food, soft drinks, and energy drinks. He quit drinking energy drinks in 2020. I cannot remember exactly when he quit drinking them. We had recently started to try and eat healthier, but our diets were still limited. After his symptoms emerged, we did try to clean up our diet.

From about mid-2018, he would skip breakfast and lunch, and dinner usually was fast food. During this time, I was extremely ill and had brain surgery in March of 2019. After COVID hit, we could barely afford food and gas, as prices skyrocketed, so he went without meals again.

In June of 2022, he moved to Virginia for school. He felt better after starting to eat regular meals. He had told me that he was no longer tired all of the time. For the first time in years, he wasn’t falling asleep. He had energy to go out and do things and he just felt good like he hadn’t felt in years. Then when the family moved with him, money had become tight again due to some misunderstandings about housing, so it was back to skipping meals and eating poorly.

From 2013 to 2022, we lived in a house for years that had mold. The molds in the house were Aspergillus, Chaetomium, Cladosporium and penicillium. We also lived in houses that were on an old military artillery range called Camp Elliot. We cooked with the tap water in the first house.

Memory, Gait, and Personality Changes

He had a couple of years complaining about memory problems and being tired before the full brunt of his symptoms appeared. He was always inside and did not go outside much.

His car had an exhaust leak and the windows didn’t roll down. He had driven it across country and also driven it to school and back and to the stores. He had complained about getting tired after driving it.

He started having dizziness and gait problems earlier this year or possibly in December. I cannot say specifically when he started, as he was never one to complain or speak up when he would get sick. Then after a couple of arguments, he developed some personality changes. He also had developed light sensitivity, kept one eye shut and had a tic.

The light sensitivity started in early or mid-March and the eye shut around late March or early April. He quit shutting his eyes in late April, after I had started giving him thiamine, B vitamins and B12. I didn’t realize it could have been the thiamine at that point, as I was solely focused on B12 deficiency at the time. With the vitamins, he stopped hallucinating and his hand had stopped trembling when he would try to hug me. If I had neglected to give him the high doses of thiamine, he had seemed to get worse. I was so traumatized at them diagnosing him with CJD, that I couldn’t keep my focus straight. To this day, he does not shut that eye and he cannot go outside in the sun without it hurting his eyes.

Rapid Decline With Hospitalization

He was taken to the hospital on April 7th after he came home from work. Although his health was declining, he was still able to drive and go to work and was still able to talk at this point. I had been asking him to make an appointment for a while to get his B12, methylmalonic acid, and homocysteine checked, because I had a feeling he was dealing with b12 and/or thiamine deficiency. He kept refusing to go in and finally my sister was able to convince him to go in, so I took him to the ER. He was hospitalized from April 7 – April 19.

A Few Days Before Hospitalization: Still Walking

I suspect during his hospitalization, in addition to everything else going on, he became dehydrated and further malnourished. He was not eating and barely drank anything the entire time he was there. He was never given IV fluids either.

While he was there, he had an MRI with contrast (gadolinium) and was given 1,000mg of acyclovir for 2 or 3 days in case it was a viral infection that was causing his symptoms. He was given Lovenox. The nurse said it was for potential blood clots. He was also given 1,000mg of methyl prednisone for 3 days to treat possible encephalitis and insulin, because they said high dose methylprednisone can cause insulin spikes, which it did.

He began to hallucinate in the hospital and rapidly declined afterwards. The problems with walking worsened. He also had a lost look in his eyes that has, for the most part gone away, but was really disturbing at the time. He became incontinent and developed short-term memory loss, which progressed afterwards and has continued. He is now for the most part nonverbal but can still understand what people are saying and still knows who his family is. Also while in the hospital, he developed nystagmus and a persistent upward gaze. To date, he is in a wheel chair unable to talk. Unable to feed himself. His left arm hangs and he barely wants to eat or drink.

After Hospitalization and Before IV Thiamine: Notice the Left Arm

Improvements With IV Thiamine

I had started him on thiamine and B vitamins in after the hospitalization. I had originally given him thiamine HCL and TTFD, a B complex and b12 injections, which I was not consistent with it. This has been extremely traumatizing and trying to do it alone, I failed. We did not see much improvement until he received IV thiamine. After the first IV thiamine (100mgs), later that night he smiled for the first time in a while.

After First Thiamine IV: Moves Leg

After I took him to get another IV thiamine of 100mg, he was able to lift his left arm and wave, catch and hold a stuffed animal, and pull tissue paper out of his gift bag. He went from mostly non-verbal to trying to speak again. The nystagmus and upward gaze also resolved. A few weeks later though, he stopped speaking again. This suggests to me that we need regular IV thiamine, something I have not been able to convince doctors of.

After Second Thiamine IV: Moves Left Arm

We have just recently begun high dose oral thiamine again.

After A Few Weeks of High Dose Oral: Moving From Car to Wheelchair

Is it CJD or Thiamine and B12 Deficiency or Both?

Prior to all of this, he didn’t have any major health problems. He does have HSV-2. He had contracted Covid in April of 2022. He went to work the day I took him into the hospital. He was never on medication and isn’t now. The hospital diagnosed him with CJD, but I have read case studies showing that Wernicke’s encephalopathy and b12 deficiency have mimicked this disease in every area radiologically, clinically, and with laboratory tests. Given his history and since he responded so well to these vitamins, I believe these nutrients are involved. I have since learned that thiamine deficiency can cause misfolded proteins, like those seen in CJD and that the prion proteins bind and potentially leach thiamine from the body. I have read several case studies where metabolic disorders, thiamine or B12 deficiency mimicked this disease. I also read that these deficiencies could even cause the cortical ribboning, that is presumably diagnostic of CJD but also indicative of Wernicke’s encephalopathy. Apparently, the cortical ribboning will disappear with thiamine replacement. There are case studies that show the rt-QuIC test has been falsely positive in people who had encephalopathy or seizures, and another case study where the diagnosis was Sjogren’s Disease. I also read case studies showing that B12 deficiency and Wernicke’s had cause extremely high 14-3-3 and tau proteins, which normalized after proper treatment. I just know in my heart that he had more risk factors for nutritional deficiencies than he did for CJD.

Regardless of the root cause, I believe high dose thiamine via IV will help, but I cannot get anyone to take me seriously and I don’t have a lot of money to pay for IVs out of pocket. So I am lost. Please help.

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14 Comments

  1. I am a huge believer that optimizing health is crucial. Your husband’s journey echoes the need for nutritional support. I’ve found B Complex supplements beneficial for sustained energy. Considering your husband’s dietary challenges, discussing a high-quality B complex with his healthcare team might provide a practical solution to bridge nutritional gaps.

  2. Did your husband get tested for CJD? Have they done a lumbar puncture? I’m surprised they gave you the diagnosis without the definitive test. My moms doctors tried to rule out everything including Wernickes and auto immune encephalopathy. Thiamine seemed to help my mom’s symptoms too…but not reverse her condition.
    If you can have the CJD test of the spinal fluid, it stops the torture hamster wheel

  3. Wonder if this was after vaccine as i had similar issues. It gave me craniocervical instability.

    Benfotiamine is a great form of thiamine that I find works better. Also i really like taurine, b12 shots, mad plus, transdermal mag spray and phosphatidylcholine also cyproheptadine and bioactive copper…mitosyrnergy form or global healing

  4. You might want to consider another missing nutrient – that of Biotin. Biotin has a genetic component that means a body can be “low functioning” and as a result can struggle to maintain ATP creation which leads into the Krebs cycle. Biotin and B12 work together but if Biotin is deficient a whole host of other issues arise and it can be like trying to run uphill against hurricane winds. While Thiamine can be helping a specific area within Krebs – cycling may be the issue in trying to maintain long term improvement. I wrote an article and it might give you some additional ideas. While a quality B Complex is vital – and dosing at least twice a day may be needed in providing other cofactors to stay in the system – higher dosing Biotin and obtaining another specific version of B12 (adenosylcobalamin) could add to improvement. This is the article if you care to read. I am not certain a direct link will post so a link can be found on the home page of the website BeingThankfulFor (.com). The article title is Neurological and Autoimmune Reactions and Diseases: Vaccine and Medication Side Effects – The Biotin/B12 Connection

  5. I’m so sorry you’re going through this. Perhaps you could consider delivering thiamine via skin patches rather than infusions? My 93-year-old dad used a patch with 75 mg of thiamine twice a week to ease Parkinson’s symptoms. (He would have had trouble swallowing a lot of big thiamine pills.) I got the patches from buyb1.com, and it sure was easy to administer this therapy. You make sure an area of skin is clean and dry, peel off the backing from the patch, and press it onto his skin. It stays on for 8 hours or so and you can peel it right off.

    I bought the company’s “B1 Sport Energy Patch,” which is supposed to have 75 mg of B1 (I don’t know what kind of B1), and you can try them out with a pack of 5 patches for $9.95 + shipping. I don’t know how much of the thiamine is actually absorbed through the skin into the bloodstream, but they seemed to do Dad a lot of good. If it seemed like he needed a larger dose, I could have given him patches more often than twice a week. I also called the company and asked if I could cut the patch to alter the dose, and they said that could be done. I suppose you could also give your husband oral B1 along with the patch, if you felt he needed more.

  6. I have another comment on your situation. First, WOW! You are doing an incredible job trying to help your husband. I hope there are people here who can help you out.

    I have been working with diet and supplements for about 30 years now. Just a few years ago, I finally came across Dr. Lonsdale’s work, and I believe that my family’s core problem, and my own extended family’s problem as well, was thiamine deficiency. Here is what I have done the last years.

    The doctors back in the early 1900s were adamant that a person was very unlikely to be deficient in only one vitamin or mineral. I suggest you add in a heavy-hitter comprehensive vitamin supplement. Here is what we use, and have used for many years. It covers all the bases, and because it is a liquid, it is absorbed a LOT better. We have found it makes a difference to do the liquid rather than the pills.

    https://www.amazon.com/Natures-Way-%C2%AEMultivitamin-Food-Based-Antioxidants/dp/B0019I8NXS/ref=sr_1_3_f3?keywords=liquid+alive&qid=1688071401&sr=8-3

    Also, we have found that stress management and taking out the things that deplete thiamine directly are necessary in my home. Milk has a compound in it that depletes thiamine; take it out of your diet. Refined flours deplete thiamine–many on this blog have moved to low carb diet, but if you can’t do that well, try using whole-grain rice flour products instead, which is most of the gluten free products. Brown rice flour products have natural thiamine in them. Noise causes stress; we used to have music and the TV on a lot, but quiet takes out stress.

    The only thing that really destroys thiamine in food is an alkali. If your husband is taking Tums, I think it destroys the thiamine in the food he has eaten. I am not sure if the other proton pump inhibitors would do the same. I lived on Tums for many years; my doctor said they were a good calcium supplement, and I did not drink milk. Instead, add lemon juice to water with meals to tip the ph toward acid, not alkaline.

    As I said in my other post, the Allithiamine was a game-changer for us, and worked a LOT better than other forms. It’s on Amazon. Don’t forget to take the magnesium with it.

    Dr. Thomas Levy has done extensive work with high-dose vitamin C, especially IV and liposomal C. He says he believes it can knock out virtually every infection or virus there is. We have found that to be true. This is worth a listen. He’s been around a long time, lots of interviews and articles from him on the web. https://www.youtube.com/watch?v=L0x8CxUKDrc
    One more thing–I believe both of my parents died of thiamine deficiency. My dad, at the end, looked EXACTLY like the old pictures of a severe beriberi patient. He took baking soda in water with most meals, “alkalizing his system” to beat his prostate cancer. He also lived on English muffins, cookies and cocoa. My mother died of complications from something called normal pressure hydrocephalus–it is essentially hydrocephalus from an unknown cause. She also had a HORRIBLE diet–refused to eat good food, and as she slipped into dementia from the NPH, she was unable to cook anyway. But still refused to eat good food people brought, or that we had delivered. English muffins, cocoa and candy. The doctors think that the only thing that can cause Wernicke’s Encephalopathy is alcoholism, but my parents didn’t drink. So no one would listen to me. And the doctors would not believe how incredibly bad their diets were. Both my parents, and my sister, are textbook cases of everything Dr. Lonsdale writes about–and I was too. Good for you not taking your doctors’ diagnosis as the last word, especially if they say there is nothing they can do to treat it.

  7. I am so sorry to hear your story. I do not see that you are using Allithiamine. It was a game-changer for us, worked SO much better than regular thiamine supplements. Another thought is liposomal B complex from LivOn Labs. They are expensive, but the liposomal encapsulation enables much better absorption and utilization. Dr. Tom Levy, who pioneered and popularized liposomal vitamins, thinks they can work almost as well as IVs.

    Are you taking magnesium? Dr. Lonsdale stresses thiamine and magnesium need to be taken together.

    Good luck!

    • Thank you. Our house is very dark and I try to take him on drives. I will get him outside more. I will look into Jack Kruse as I haven’t heard of him before.

  8. I’m in tears, so relating to your husband’s story.

    I was diagnosed with Dry Beriberi thiamine deficiency and had a high binding capacity B12, as well as vitamin D deficiency for over a decade.

    My story is published here too.

    I could barely walk or function by the end of 2019. Thought I had MS or thiamine deficiency after researching. Thank god for an astute neurologist who finally listened to me, tested then found I was lab tested deficient in 2015 but no one told or treated me then.

    Although I had classic symptoms, dozens of specialists carpartmentalized my symptoms just to their specific specialties.

    Like your husband’s off balanced gait, I too was the same. I showed remarkable improvements in 4 months, then covid took me down again so I had to up dosing.
    I desperately wanted answers why I was thiamine deficient, and sought care with a functional medicine doctor.

    Already spilling protein in my urine, (thiamine deficiency affects the kidneys), I also showed him my folder of blood work and history of thiamine deficiency.

    He ordered heavy metal testing. The nurse was supposed to test my urine prior to giving me the CaEDTA, but “opps, she forgot” and I was so weak, confused, and brain fogged post covid, that I just trusted they knew what they were doing.

    This test showed gadolinium and other heavy metals still in my system post a brain MRI done 2/20. The IV caEDTA was resulted at the end of August 2020. Within 48 hours I started going into kidney failure. Thank god I had been on thiamine and upping it, slowly recovering from covid.

    Hospitalized and sent home twice before they finally admitted me for a week with a GFR 9, stage five kidney failure, I refused their only known treatment of diuretics and steroids, insisting on high dosing thiamine.

    Since I had already worked up to 1200 mg of B1 hcl/allithiamine I begged for 500 mg IV every 8 hours, which I got for 2 days. Then the doctors wanted to lower it to 100 mg daily. I begged to stay at 200 mg IV every 8 hours which they agreed to give seeing if my labs would improve from this nephrotoxic drug used.

    Sure enough, by weeks end my bloodwork was improving. I was scolded by every doctor that came in. They even sent a psychologist to evaluate me.

    I was told to stop all supplements upon discharge. Was sent home on 3 antihypertensive drugs, but only started two and continued taking thiamine hcl but switched to lipothiamine as Dr Lonsdale encouraged to help lower my Blood pressure and blood sugar (it’s ttfd with ALA). I rapidly began diuresing, loosing 30 pounds of fluid in 4 weeks. My kidney function testing returned to “within norms” by my 6 week discharge check up with the nephrologist.

    Although not as severe as your husband, I was incoherent, barely able to get out of bed, talk, or walk without looking “drunk.” I too had no guidance from my doctors other than “take 100 mg of any over the counter thiamine for life,” because I had unrecognized thiamine deficiency so long.

    Your husband is so blessed to have your advocacy and loving support. Researching here and reading Lonsdale/Marrs book helped give me the confidence I needed to stay the course.

    Doctors think once your labs look normal, you’re “cured,” however, I couldn’t stop B1 without all my symptoms returning. I’d learned that thiamine may sit in blood 1-3 weeks so testing is a poor reflection.

    Symptoms told me to up dosing slowly until most symptoms were eased. I had read that for some serious cases, dosing may need to be in grams not milligrams.

    I learned to up dosing during illness or high stressful events. Now, I’m considered “thiamine dependent,” and no longer worry about “testing.” I follow my symptoms.
    I dose every 2-5 hours depending on symptom needs. I’m sure to support gut and liver health, electrolytes, methylation, and glutathione. I now tolerate many forms of thiamine and tolerate doses of 2200-2400 mg daily.

    I’m an experienced RN, not a doctor, but would love to talk or message you for suggestions or questions on progressing.

    Thiamine has worked MIRACLES for ME.

    I believe your husband can heal. It takes lots of perseverance, patience, and time. Journaling helped me follow my relationship with food, supplements, vital signs as I rated my symptoms comparing my daily progress.

    Sometimes we just have to take our health in our own hands.

    Thank you for having the courage and wisdom to record him. Living alone, I took selfies and some videos. Seeing the progress is slow, but noting it in the videos is uplifting and gives HOPE.

    Like with me, as a nurse I had received every vaccine, many antibiotics, and was exposed to many toxins over 30 dedicated years of hospital nursing; assuming your military partner did too. Our bodies over ran our threshold, I believe.

    Sadly, most doctors believe thiamine deficiency has been eradicated. I see it everywhere now. Covid, and any infection or virus depletes our vital nutrients.

    I recovered twice from it at home, using only supplements, chiefly thiamine and cofactors. I saved my 81 yo Aunt and many other family members doing the same.

    I’m praying for you and your husband’s recovery and peace. God Bless your family. Thank you for your service. You shouldn’t have to worry about the finances, our military should be cared for!

    I know how expensive the supplementing can be. I too am in debt and I have double health care insurance which doesn’t pay for vitamins.

    May he continue recovering. He may need much higher doses to fully see symptom relief. I sure did. ❤️???

    • Jane,
      I too, have a long story of thiamine deficiency missed by doctors. Rather than typing it out here, perhaps there is a way we can talk via email? I am also an RN. I would love to connect with another professional that has had the same experience. Also I see you mentioned now being thiamine dependent. I have noticed I can’t come off of my thiamine now, and the dose I need daily to keep symptoms at bay is quite high. Why is that? Once the deficiency is corrected, we should not need life long high doses. I have wondered if I have an adult onset metabolic disorder that is causing this insatiable thiamine need. This is all very interesting.

    • Thank you so much! I have read and shared your story a few times as it was something that always shocked me and inspired me! That a nutrient could reverse kidney failure! I’m always blown away at the role of nutrients in our body!

      Yesterday, my husband was laughing for the first time in a long time. I didn’t get it on camera, because he stopped as soon as I got the phone out. I would love to message you as it is so hard trying to figure all of this out on my own.

  9. I’m so sorry to hear of your husband’s struggles. Although I have a different diagnosis, my symptoms are very similar to what your husband is going through. I became unable to walk after a series of vaccines, but have always gotten worse after medical procedures involving dyes/contrast. I’ve improved greatly on the thiamine protocol but also required the trifecta of molybdenum, selenium and iodine, to open my detox pathways. I hope you find healing ❤️‍?

    • Thank you so much. Thank you for bringing this up about these 3. It has to be scary for you to react that way to dyes/contrast. Do those nutrients help detox the dyes?

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