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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