My Father’s Decline
In 2015, my 72-year-old Dad, a daredevil who raced motorcycles and piloted planes he built himself, started losing the ability to walk. His legs would give out from under him without warning. He thought it was a back injury compressing nerves, and he spent months going to the chiropractor hoping adjustments would fix him. But his legs only continued to grow weaker, eventually becoming so numb he couldn’t feel them. Within a year, he was stuck on the couch, barely able to drag himself to the bathroom. Numerous doctor visits provided no answers. He was eventually accused of “drug-seeking” and refused to let us take him to any more doctors. He continued to deteriorate, his legs swelling up like balloons. He became incontinent, and couldn’t stop peeing on himself. He required constant visits by me and my sisters to clean him up and put food within his reach. It was clear he was dying without any medical diagnosis or even real curiosity from his doctors. I eventually moved him in with me, but his disability overwhelmed me. He couldn’t even roll over on his own because his arms were now weak and numb, too. I had my husband help me load him into the car and take him to the emergency room.
Once there, doctors told me my father’s bladder was unable to void on its own (neurogenic bladder), and urine had been backing up into his kidneys for who knew how long. He now had a severe kidney infection, as well as a septic blood infection. He likely would have died within a matter of days, the doctor said. They put a catheter in him and gave him IV antibiotics. He now had permanently damaged kidneys and a new diagnosis of congestive heart failure, with his heart working at only 30 percent of normal. They put a pacemaker in him to keep his heart going. But, despite all manner of tests, none of the doctors could figure out why his bladder could no longer empty, nor why his legs had stopped working. On his sixth day there, a team of neurologists gathered at the foot of his bed and hesitantly suggested that the cause could be some spinal stenosis they could detect in his neck. “It would be an unusual presentation for injury there to impact his legs more than his arms, but perhaps it’s worth trying surgery to correct it.” My father asked if it would help him regain the ability to walk; he dearly wanted to be able to fly his plane again. They said they couldn’t predict, the body was mysterious, who knew what the outcome would be?
My father went through neck surgery to repair the stenosis, followed by weeks in a rehab center. Then I brought him home. For the next eight months, he stabilized to a degree, and slowly regained upper body function. Still, because of his ankle drop and emaciated muscles, he could not walk without a walker and custom-built braces. Nor did he regain the ability to pee on his own; he now had to catheter himself five times a day to void his urine. I remained unconvinced that relatively minor spinal stenosis of the neck had caused him such physical wreckage.
Two Sisters With the Same Deficiency
In the meantime, we learned my youngest sister had been diagnosed with dementia, although the neurologist said he couldn’t pinpoint what “type.” She was only 51 years old. It was upsetting and scary to me, because for a long while I had been dealing with strange mental symptoms of my own. For years, I had been experiencing plenty of tingling and numbness in my legs, but that felt a minor nuisance compared to what I called “episodes” where my mind seemed to not be perceiving things right. Everything around me felt unreal. These episodes were increasing, yet I’d been so distracted by my father’s medical drama that I didn’t pay much attention. Then, not long after I got my Dad moved to an assisted living facility, I woke up feeling as if I was trapped in some kind of drugged state, like an LSD trip gone wrong, accompanied by heart-pounding panic attacks that seemed never to end. My husband took me to the ER. They said my blood work was all fine, told me I likely had an anxiety disorder and sent me home with a prescription for anxiety medication. Over the next few months, the feeling of unreality never went away. I felt like I existed in some kind of bubble, with a thick glass wall between me and the world, with the constant anxious question of “Is this real?” I was also starting to walk strangely, staggering unexpectedly. I was going numb from the knees down, and my arms were suddenly numb from the elbows down to my fingers. I had to hold on to the wall in the shower so I wouldn’t fall over. It was terrifying to feel so unsafe in my own mind and body, and several times I thought of ending my own life.
Three months into this agonizing state, it became worse, my mind went completely sideways; everything swam around me, and I felt I couldn’t form words. I was sure I’d experienced a stroke. Another trip to the ER. While there, I confessed I was a frequent alcohol drinker, so the doctor ordered a CT scan, looking for Wernicke’s Encephalopathy, he said. But my brain looked fine on the scan. Doctor visit after doctor visit, test after test, I got no answers beyond a case of hyperthyroidism that responded quickly to medication, but the resolution of which gave me no relief from my symptoms.
Discovering Thiamine and Another Sister Develops Symptoms
Of course, I was on the Internet constantly, trying to find a reason for what was happening to me. After my second ER visit, I typed in the word “Wernicke’s” into a search engine, alongside the list of my symptoms, and found an article by Dr. Derrick Lonsdale on the Hormones Matter site, an article which talked about thiamine deficiency, Wernicke’s and modern-day beriberi. My heart raced as I read such a close description of my symptoms. I quickly read through his book co-written with Chandler Marrs on thiamine deficiency, and immediately started swallowing thiamine pills. But as predicted by Dr. Lonsdale, I experienced the vitamin “paradox” of worsening symptoms and had to step back, divide up pills, and increase the dosage very slowly.
I also ordered another book Dr. Lonsdale mentioned, published in 1965, about beriberi in early 20th century Japan. Inside were many photos of beriberi victims, one Japanese soldier’s photo captioned with “the emaciation and characteristic ankle drop of beriberi.” I was stunned to see the soldier’s legs looked exactly like my father’s. I also found descriptions of sufferers being unable to urinate, a problem I’d never found on Internet lists of thiamine deficiency symptoms. The book also talked about “wet beriberi,” which damages the heart, just as my father’s heart was now damaged. Finally, an answer! There was no doubt in my mind that my dad had somehow developed beriberi.
I started giving extra thiamine to him as well, although he’d been taking some in the B-complex his doctor had prescribed to him in the hospital for anemia. (Could the extra thiamine in that daily pill have been the reason he was able to stabilize after his neck surgery?) At his next doctor visit, I took the photos of my dad alongside beriberi victims and asked if this could be what happened to him. She said, “Hm, interesting,” and ordered a lab test to determine his thiamine levels. I warned her I had been giving him thiamine for weeks, so the test would likely come out normal. Which of course, it did, and she thus dismissed the idea he might have had beriberi. I couldn’t understand why, after seeing those striking photos, she wasn’t curious to investigate more.
Meanwhile, I took my sister with dementia, who had been complaining of numbness in her hands and arms for months, to a lab to get her thiamine levels checked, too. The results came back normal. But I handed her a bottle of benfotiamine anyway and asked her to start taking it. She said she would but later confessed she threw the bottle in the trash. “I don’t like taking pills,” she said. I wished she would, but I didn’t press. After all, my halting efforts at taking more thiamine hadn’t led to any kind of big improvement for me. I was still struggling along in a bubble of unreality and numbness. I eventually took seriously Dr. Lonsdale’s advice to go beyond vitamin pills and get B-1 injections. I found a naturopathic doctor willing to give me daily thiamine shots for two weeks. Again, I felt no dramatic difference, which made me doubt that I had a thiamine issue after all. But I suppose it did seem some of the numbness in my legs was improving. I could at least stand on my own in the shower again. So, I kept taking daily benfotiamine and getting the occasional B-complex shot with thiamine in it.
Slowly, over the next two years, I noticed my mental state improving and the numbness in my limbs finally resolving. And my father, having gone through several bottles of benfotiamine, started getting some sensation back in his legs. But he believed his doctor that it could not be beriberi that took him down, and he waved away more extra thiamine, although he was still getting it from his daily B-complex. Eventually, another sister came to visit and told me how scared she was because her legs had started going numb. I gave her all the thiamine I had and begged her to take it, and a few months later she called me, grateful the numbness has gone away. She now takes benfotiamine every day.
Tragically, my sister with dementia went into a memory care home where she would only eat the junk food and sugary carbohydrates served to her, a diet which I now understand depletes thiamine very quickly. As she was not allowed to swallow any pill not prescribed by a doctor, and her blood levels of thiamine had been measured as “normal,” she was not prescribed thiamine. She declined rapidly, and soon started asking me the same question I had so often asked myself, “Is this real?” Like our father, she stopped being able to walk or otherwise control her limbs. Also, like our father, she stopped being able to urinate on her own and had to be catheterized. This past January, she died a truly horrific death from what the doctor called “complications of dementia.” She was 53 years old.
A Probable Genetic Cause
I am now convinced that there is an inheritable problem with thiamine transport in my family and that we require much higher levels of thiamine than the rest of the population to function normally. I cannot prove it without the help of doctors who will take seriously such a possibility, and even if I could find such doctors, how could they prove it? What tests would tell us that? Even after all that me and my father and siblings have been through, my certainty can waver. After all, it took many months of persistent thiamine intake for me to return to anything close to normal, so how do I know I wouldn’t have improved without it? I can’t know for sure. But, I have found that if I get distracted by life and neglect taking thiamine for several weeks, my hands start to go numb again, and my primary mental symptom of unreality starts to creep back. I also notice that if I take thiamine with strict regularity, I feel so much better.
Today, I am haunted by the possibility that many others might have a similar genetic problem in handling thiamine, and could be going through similar desperate declines as my family experienced, without ever knowing that a simple vitamin pill could resolve it. All because of a calamitous blind spot in the medical system. Imagine all the human misery that could be avoided, not to mention medical costs saved, if more doctors would consider the possibility that beriberi can still strike. I will be forever grateful for the tireless work of Dr. Lonsdale and the Hormones Matter site; I believe the information I learned there literally saved my life. I hope my story helps others in the same boat to see themselves and be able to save themselves as well.
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