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Creutzfeldt Jakob Disease, Thiamine, or B12 Deficiency?

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CJD, thiamine, B12

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.

We Need Your Help

More people than ever are reading Hormones Matter, a testament to the need for independent voices in health and medicine. We are not funded and accept limited advertising. Unlike many health sites, we don’t force you to purchase a subscription. We believe health information should be open to all. If you read Hormones Matter and like it, please help support it. Contribute now.

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Photo by Alina Grubnyak on Unsplash. Image edited.

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Post Concussive Metabolic Dysfunction in a Dancer

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post concussive thiamine deficiency in a dancer

A Concussion, an Infection and the Slow Spiral of Declining Health

Our daughter started ballet at 2.5 years old, and by 5 years old she had started competitions and had decided she was going to become a professional ballerina. She was talented, had an amazing work ethic and completely loved her life of ballet, friends and school. She was a very happy child, bright and bubbly and she woke up everyday super excited about what was going to be happening that day. From a very early age, our daughter showed determination, stubbornness and a quiet, but strong competitiveness.

In October 2016, when she was 12 years old, she got a severe concussion, and her whole life stopped for nearly 3 months. She stayed in her bedroom in the dark, couldn’t read, slept for most of the day and even trying to tie her shoelaces gave her an intense headache. After months of no improvement, we took her to a chiropractor, who told us her neck was out and she wouldn’t have gotten better until it was put back in properly. Our daughter floated out of that appointment so happy that she nearly felt back to her normal self.  The chiropractor gave us an information sheet about Thiamine/B1 Vitamin at the time, but we didn’t really take any notice apart from trying to give her some more marmite (yeast spread) as it suggested.

Then in September 2017, both our daughter and our older son suddenly became very ill with vomiting, diarrhoea, rashes, headaches, stomach pain, joint pain, and bright red palms. Our older son had more intense symptoms, and also had extreme nose bleeds and petechial rashes – he was admitted to hospital where they found his liver and spleen were enlarged but they couldn’t work out what was wrong. Our son had recently come back from a school trip to Vietnam – we were trying to find if there was a link to Vietnam but he had already been home for a couple of weeks so the hospital didn’t test for any illnesses from Vietnam. After weeks of this illness, we were told our daughter had Mono/Epstein Barr Virus and that this was causing her illness and it was completely unrelated with our son’s illness.  We found this extremely odd that they could have mostly the same symptoms at exactly the same time, but as our son was more acute and in hospital, we were just concentrating on trying to get both of them well.

Since then, our daughter has never fully recovered. She started not sleeping, and constantly having body pains and headaches. She was sent to a paediatrician who diagnosed her with Child Migraines and told us she would outgrow them and was given melatonin for sleep. The melatonin worked for 3 nights and then completely stopped working. Our daughter started to put on weight, and would look puffy in the face, and she lost her menstrual period even though she was gaining weight. She was always tired, always had body pains and slowly but surely lost her sparkle.

Declining Metabolic Function and Weight Gain

At the end of 2017 when she was 13 years old, she lost her place in the national ballet training program. Our daughter was extremely stoic at this point, and was determined to get a professional career without the training academy’s help. Throughout 2018 she continued to put on weight, no matter how healthy she ate or what she ate, and still didn’t have a menstrual period. We saw doctors and nutritionists, but they couldn’t explain why her weight continued to increase or they would tell us there was nothing wrong. Our daughter became quiet, withdrawn, easily irritated and frustrated and stopped being interested in anything or anyone. She continued to work at her ballet, and the only time she would ‘light up’ would be on stage, as she was still trying to compete. During 2018, she gained 10kg/22lbs while being on a very strict nutrition plan. She auditioned for a ballet academy to start at the beginning of 2019 and was accepted; she was happy but in a tired way, and she knew that she would need to stop gaining weight but had no idea how she was going to do that when she had already been trying so hard.

In February 2019 we saw a naturopath who diagnosed our daughter with Adrenal Fatigue, and said her thyroid needed support, and that she still had lingering Epstein Barr Virus in her system.  The naturopath pointed to our daughter always wanting salt as an indicator of adrenal fatigue.  She was put on some herbal remedies for her immune system, inflammation and liver, adrenal and thyroid support, and relaxation/sleep support as well as Epstein Barr Virus liquid drops to help her immune system recognise the lingering EB virus in her system.

The weight started to instantly melt off, her sleeping improved and we felt we finally had some answers and a solution. Our daughter was happy with the weight loss, but still struggled with her other symptoms: dizziness, dry/gritty eyes, chest pain, tiredness, muscle and joint pains, extremely sore lower and upper back pain, brain fog, very low blood pressure, daily headaches, daily sore throat, complete lack of energy and occasionally sore under her right ribs (later on she told us that she couldn’t sweat, no matter how hard or long she exercised).

A month after starting the herbal remedies, she had her first panic attack during rehearsal for a school production – she had no idea what was happening and it took a long time to calm her down. Her mental and emotional state continued to decline, it was a daily struggle to do anything; she always had to push through every single day. We continued to take our daughter to the doctors for the sore throats, tiredness, headaches etc. but we were always told there was nothing wrong with her. During this time she got an infected toenail, and ended up being on antibiotics for twice as long as usual as it wouldn’t heal. The naturopath added in additional supplements to help, and eventually her toe got better.

Even though she was still losing weight, our daughter became very apathetic and would stay in her room – we would try to talk to her every day, try to reach her but she was shut off emotionally.  Then we ran out of one of the herbal supplements, and suddenly she began to gain weight again – she gained 2.8kg/6.2lbs in 2 weeks. Once we got her back on the herbal supplement she began to lose weight again, but it seemed to be slower and less effective. Our daughter got to 51.3kg (she is 5ft7 inches tall) and she was happy, and her ballet teachers told her to not lose any further weight as she was fine at the weight she was.

Hair Loss, Pale Skin, and Skyrocketing Weight

Halfway during 2019, our daughter’s hair started to fall out in clumps, it got to the point where she was too scared to wash or comb it, as it was falling out so much. We noticed our daughter was extremely pale, and at times she looked translucent. The naturopath put her on iron pills and told us to massage her scalp, but it didn’t really make a difference. The naturopath didn’t think she needed to be on the adrenal/thyroid support any longer, and was changing her supplements. Our daughter’s weight then skyrocketed, and our relationship with the naturopath started to deteriorate as she kept implying that we were starving our daughter and we felt she wasn’t able to answer our questions on why one particular supplement seemed to be the only one that would help our daughter lose weight, but she still had the other symptoms that were getting worse.

We took our daughter to other GP doctors, trying to explain her symptoms and asking for her thyroid to be checked, but we were continuously brushed off and they would look at our daughter and say it was just normal teenage hormonal stuff and there was nothing wrong. In our gut we felt there was something drastically wrong, but nobody would listen to us. We started to hate going to the doctors, going through her symptoms only to be told again and again there was nothing wrong with her, and being looked at like we had the problem, not our daughter. We started trying to research things ourselves, started tracking and monitoring everything she ate/did/sleep patterns. The naturopath would change the supplements and our daughters weight would skyrocket – we would then put her back on the original supplements and again she would start to lose weight, but every time it was less effective.

Low Metabolic Rate, Low Estradiol, Yeast and Bacterial Overgrowth, Constipation and Parasites

At the beginning of 2020, our daughter’s weight was going back up significantly and it seemed that the original supplement was no longer working at all. We realised that our daughter’s face and neck seemed to be more swollen on the left side, but couldn’t find any reason why it would be like this.  Our daughter started to get new symptoms around this time as well – from not being able to sweat at all, she started to have extreme sweating everywhere, and started to get hot flushes and night sweating.  We noticed that the hair on her upper lip was more noticeable/darker, and she started to get a small patch of hair just under the middle of her lower lip as well. She also started to get a very bloated around her stomach area, and couldn’t pull it in no matter how hard she tried.

In February 2020, we decided to try and get testing done ourselves, and found a functional doctor who supplied a variety of tests. We got a hormone and thyroid test, as well as a MTHFR gene mutation test.  We thought if we could show our doctor some factual data, we might be taken more seriously. The functional doctor advised us to also do an Organic Acid urine test, which we did as well.  The test results came back saying that our daughter’s total estrogen was so low that it was at the level of a post-menopausal woman, but the functional doctor thought that was because she was a dancer. The organic acid test picked up that she was in a hypometabolic state; again with the reason given that this was because she was an athlete. The organic acid test also showed that she had a significantly high amount of yeast and bacterial overgrowth in her gut, which would cause inflammation system wide and insulin resistance.

The functional doctor wanted to test for parasites as well, so we did a complete microbiome mapping test using a stool sample. While taking the stool sample, we were surprised that our daughter could only produce tiny, rock-hard little pebbles and we questioned her about it, we then found that she was constipated but she thought passing tiny pebble-type stools only every 3-5 days was normal.

While we were waiting for the microbiome mapping results, the functional doctor prescribed a total of 30 supplements/remedies as well as adrenal support liquid drops – these were to cover supporting biochemical pathways, weight management, cognitive support, anti-inflammatories, detoxification, liver support, hormonal metabolism, adrenal and energy support, amino acids to support cellular energy, mitochondrial NRG multivitamins to support cellular health, l-tryptophan to support sleep and neurotransmitter mood support. During this time she was also advised to stop all dairy (she was already gluten/sugar free and very low carb). We did take all of these tests results to our GP doctor, but were advised that they didn’t recognise these tests.

After a week of the new supplements, we noticed a complete shift in our daughter’s energy level and emotional/mental state. We were relieved to have our daughter’s personality back – it was literally like a heavy, suffocating blanket had been taken off her and she could finally think, feel and breathe again – it was a huge difference seeing her not having to mentally struggle through every single day. We did a lot of talking with her and she finally admitted just how numb she had felt to everything, but also scared that this was how she was going to be for the rest of her life.  The supplements did nothing for her weight, which continued to increase, and some of the other physical symptoms, but we were now clinging to the information that we knew she could lose the weight, and that now she could also be better emotionally and mentally with higher energy levels – we just had to figure out what was stopping her from having all of these things at the same time.

In May 2020, the microbiome mapping results came back, and we were surprised to find that our daughter an extreme level of a parasite in her system, called Blastocystis hominis, as well as an overgrowth of Rhodotorula fungi and a couple of other opportunistic bacterial overgrowths. The functional doctor immediately put her on a parasite/bacterial/yeast eradication protocol that was to be for two months, and then we were supposed to follow that with 6 months of a rejuvenation program.

When our daughter found out it was a parasite that was making her sick, she was absolutely ecstatic. She had loved ballet her whole life, but thought it was ballet making her sick so had been pushing it away which had been hurting her emotionally – it hurt her to think that the thing she loved the most was hurting her. Now that she knew it was instead a parasite making her sick, she felt she could allow herself to love ballet again. While waiting for the herbal remedies for the eradication protocol, we started to research the parasite, and started to become very concerned at just how difficult it was to get rid of it, and the devastating symptoms/damage that it could do.

Looking at other protocols that were used to get rid of this particular parasite, the remedies weren’t the same as the ones prescribed by our functional doctor, so we questioned if these particular remedies had been used for this parasite before and if they were successful. We were assured that these remedies had been used and were definitely successful.

Failed Treatments and Inconclusive Diagnoses

Our daughter started on Australian Oil of Oregano, 6 capsules a day totalling 900mg of essential oil each day, as well as 6 capsules of a GI-Microbe remedy for worms. After a week she noticed she had a very itchy bottom and a sore stomach. Our GP doctor wanted to check for PCOS because of the lack of menstrual period and her hair falling out, so our daughter had a pelvic ultrasound 6 days after starting the Oil of Oregano. The sonographer couldn’t see anything in the ultrasound because of the amount of gas (it looked like billowing black clouds on the screen), so after a lot of discussion due to our daughter’s age, she had an internal ultrasound. The sonographer was surprised that it was still hard to see anything due to the amount of gas, so could only see one ovary and a small piece of her uterus, which the sonographer said looked good and didn’t indicate there was PCOS.

During the following week our daughter’s stomach pain became more intense, and her weight was skyrocketing. We started to get very concerned at her escalating reactions but kept being reassured by the functional doctor that this was normal. After 20 days of being on the Oil of Oregano we decided to take our daughter off all of the supplements as we felt they were just making her worse. All of the literature on the parasite Blastocystis advises that you need to wait 8 weeks before doing PCR stool testing to see if the parasite has been eradicated or not. We are currently waiting until 10 August 2020 at the earliest to be able to test to see if the parasite is gone. Since this Oregano treatment, her stools are now every day and better consistency (they were floating which we think is fat malabsorption issues?) and her menstrual period has returned. Her appetite has also reduced, and she isn’t craving carbs and sugar as she has now revealed she used to.

Since then our daughter’s weight has continued to increase at a rapid rate – in total from 27 January 2020 to 31 July 20202 she has gained 14.5kg/32lbs, with 10kg/22lbs being in the last 2.5 months.  She can physically no longer do ballet, so she sits and watches in class instead. After joining a Facebook group for the parasite Blastocystis, we have been seeing a naturopath in Australia via Zoom who had the parasite themselves. We are currently waiting on a SIBO breath test results as the naturopath thinks our daughter also has SIBO. We spend all of our time trying to research all of our daughter’s symptoms, while watching her physically deteriorate. It has totally consumed our family.

Where We Are Now: Was It Thiamine All Along?

Our daughter is in a better mental/emotional space, but doesn’t physically recognise her body at all.  Even our daughter’s orthodontist asked why she was so swollen in her face, especially the left side – but the doctors still don’t think there is anything wrong. Our daughter’s physiotherapist is too scared to touch her, as she is so swollen. We spend every day crying at some point. While researching SIBO symptoms, we came across a comment about Thiamine deficiency, so started to research and bought the book “Thiamine Deficiency Disease, Dysautonomia, and High Calorie Malnutrition”.  Reading about the swelling of the face, and that it is fluid retention in the body was a revelation. But because of what happened with the Oil of Oregano, we are too scared to try doing something on our own and potentially making it worse, and the more we research, more of the other co-factors, we keep finding and things to be careful of. We have been to our GP doctor asking them to investigate if it could be beriberi, so they have started doing blood tests, but then we found in the appointment notes that the doctor still thinks our daughter looks well, so we are disappointed that it looks like they are not taking this potential diagnosis seriously.

Currently we’re waiting on Allithiamine and Lipothiamine to arrive from Australia, as we can’t purchase it here in New Zealand, but with Covid-19 there are huge delays in postage. We have started our daughter on 150mg of Benfotiamine (even that was extremely difficult to find in New Zealand) but at this stage we are hesitant to just ramp up the dosage to see instant results. We took our daughter back to the chiropractor who now advises that her kidneys/bladder aren’t working properly, and also that her vagus nerve isn’t working either. Just this week, we have taken her to an acupuncturist to try and help with the fluid retention, and they’re concerned about her heart and liver and just how swollen she is. We have added in legumes to her diet to help with bile function/detoxification and her stools are now increasing and no longer floating. We are now wondering if maybe she was hypoglycaemic as well.

Reading the comments on the Thiamine Deficiency Facebook group, we should also be looking at potassium supplementation, but conversely you shouldn’t supplement with potassium if there is something wrong with your kidneys. With the doctors not believing us, alternative practitioners wanting to potentially only push their own agenda/supplements or not fully understanding the full consequences of their remedies, or not being able to find out what the root cause of the problem is, and the conflicting information all over the internet, we are completely lost/scared/petrified/confused and feel a huge pressure to fix our daughter and it feels like time is rapidly running out. The stress on us as parents is completely overwhelming, and financially we feel like we are throwing money at this ever-increasing problem and the money is fast running out. We feel that every day is getting worse than the day before, and our hope has faded to a tiny pinprick of light. Gathering all of the information together for the doctors/alternative practitioners/supplements/nutritionist plans/tests looks absolutely ludicrous, but when you’re in the thick of it you’re completely desperate to find anything that could potentially fix your child. Then when it doesn’t work, or it makes the symptoms worse, the guilt is huge.

We’re hoping that by publishing her story on Hormones Matter, others might look at our daughter’s case history, and confirm what is wrong, explain it to us so that it makes sense, and help us fix her in a safe way.

Current Diet and Supplements

Below is a snapshot of our daughter’s typical diet and supplement regime. Please note, the Benfotiamine was begun only recently.

Breakfast Morning Tea Lunch Afternoon Tea Dinner Water/Teas and Remedies before bed
Douglas Labs Ultrazyme x 1 1 large gold kiwifruit Douglas Labs Ultrazyme x 1 50gm Coconut Yoghurt 105gm Roast Beef 3 x Magnesium Citrate (Pure Encapsulations)
2 Egg Muffins – Bacon/Veg 2 teaspoon sunflower seeds 90gm tin pink salmon with probiotics 0.5 cup roast pumpkin
2 Tablespoons Pumpkin Seeds 1 cup Almond Milk 1 cup green Kale/Pak Choi (homegrown) 10 almonds 0.5 cup broccoli
1 Tablespoon Apple Cider Vinegar 2 x Tran-Q 1 cup tomatoes 1 Apple 0.5 cup peas
2 Brazil Nuts 0.5 cup cucumber 2 x Tran-Q
1 scoop Orthoplex Gut Rx 0.5 cup grated carrot
1 X HPA Essentials Tablet 0.25 cup brown rice
** 1 x Doctors Best Benfotiamine 150 1 Tablespoon mashed Avocado
1 teaspoon flaxseed oil
1 tablespoon lemon juice
1 X HPA Essentials
1 scoop Orthoplex Gut Rx

** Benfotiamine was just recently added as of July 25, 2020.

We Need Your Help

More people than ever are reading Hormones Matter, a testament to the need for independent voices in health and medicine. We are not funded and accept limited advertising. Unlike many health sites, we don’t force you to purchase a subscription. We believe health information should be open to all. If you read Hormones Matter, like it, please help support it. Contribute now.

Yes, I would like to support Hormones Matter.

Image by Dimitris Doukas from Pixabay.

This story was published originally on August 10, 2020. 

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An Artist’s Decades Long Dysautonomia Treated With Thiamine

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artist with thiamine deficiency

Here is the story of my longstanding thiamine deficiency, which was not recognized by doctors. I am 54 years old and have had health issues most of my life.

Early and Prominent Orthostatic Hypotension Missed for Decades

Around the age of 10 or so, I began blacking out upon standing. It never led to syncope — just a brief dizziness and loss of vision. A particular church practice at school caused me to black out often. Lots of kneeling and rising — a great challenge for what would be later diagnosed as orthostatic hypotension. I sometimes had to be led out of church by a fellow student and taken to the school nurse. A friend reported to me that on those occasions, as I was being led out, even my lips were white.

In my teenage years, another challenge was orthostatic intolerance. I would get dizzy and feel light-headed if made to stand a long time. Hot, crowded buses were a particular nemesis: I would black out and feel on the brink of fainting. It was mortifying to be an 18 year old who had to request someone older give up their seat to me because I felt faint. I used to pray before I got on a bus.

During these years, heart palpitations were also a constant issue. It was a way of life for me — my “normal.” I didn’t find out until years later that not everyone experienced violent heart pounding upon climbing a set of stairs. Abnormal sweating was a problem, too — I sweated profusely from the underarms, but nowhere else. Exercise would make my face red and hot — I would get terribly overheated and feel unwell, because my body wasn’t able to sweat and cool itself.

All of these things point to a malfunction of the autonomic nervous system, but I didn’t know that then, and no doctor seemed to put it together, either.

The lower part of the brain, the brainstem, controls the autonomic nervous system.

The autonomic nervous system regulates the most basic aspects of living: heart rate, breathing, blood pressure, sweating, hunger and thirst, fight or flight response, etc. It requires thiamine to function properly.

I was also a good deal underweight and never had as much energy as others. I was terrible at sports and was weakly but did well academically and with art.

Mitral Valve Prolapse, Tachycardia and Heart Palpitations: Signs of Dysautonomia

During art school and afterwards, I waited tables to support myself, as well as worked at school to help pay my tuition. The output of energy this required would prove too much for someone deficient in thiamine. Thiamine plays a fundamental role in energy metabolism, so a deficiency is consequential. My schedule overwhelmed me — I dropped out after my second year. (I eventually went back three years later to complete my degree — this is just one example of how chronic fatigue affected the trajectory of my life.) 

Somewhere in those years, I was diagnosed with mitral valve prolapse. I remember being astonished that the diagnosis had been missed all these years. I was told it was something I had been born with, so it was surprising that no one had noticed it until I was 22. I now know that mitral valve prolapse is associated with defective functioning of the autonomic nervous system, that I likely had *not* been born with it, and that this instead was yet another sign of my malfunctioning autonomic nervous system. Mitral valve prolapse is also associated with magnesium deficiency. The pieces of the puzzle were all there — they just needed someone who understood how they fit together.

It was a relief to be out of school and to be able to rest, but my undiagnosed thiamine deficiency continued to affect me. Palpitations and tachycardia were an exhausting way of life. I became good at avoiding things that would exacerbate that, but things I couldn’t avoid — like oral presentations in a literature class I was taking — would so exhaust me as to render me incapacitated the next day. The intellectual rigor of it thrilled me, however. Life continued like that — avoiding many things that a healthy person would be capable of, in order to preserve energy, while making exceptions for certain things I loved — but paying for that with crushing fatigue.

A busy night of waiting tables was now capable of doing me in so much that I couldn’t get out of bed for hours the next day. My description of how I felt at the time was like a broken stick. I later learned that severe thiamine deficiency is called beriberi, which translates to “I can’t, I can’t.” My heart symptoms also became more complex: palpitations and tachycardia, as always, but now chest pain and an occasional flutter, too. I saw a doctor, who recommended I get an echocardiogram. I didn’t have health insurance, so that wasn’t possible.

Decades Later: Debilitating Fatigue and Arrhythmia

I went many years without medical care. At age 44 my symptoms worsened — the fatigue was debilitating and I was now experiencing an arrhythmia. I was able to teach one day a week in an art school, but the energy it required made me incapacitated the next day.

I was also told by a doctor that I should be evaluated for Marfan syndrome, a connective tissue disorder. I twice landed in the ER due to chest pain and a new arrhythmia while waiting for my appointments with genetics and cardiology. When I finally saw the geneticist, I got great news: I did not have Marfan syndrome. I was clinically diagnosed with a related but less serious connective tissue disorder: MASS phenotype, an acronym for Mitral valve prolapse, Aortic enlargement, Skeletal and Skin findings. Though I was relieved by the news, I was also perplexed: why did I feel so awful and fatigued all the time?

My cardiologist had me wear a 30-day Holter monitor, which resulted in him diagnosing me with dysautonomia. Orthostatic hypotension, and also sinus tachycardia, premature ventricular contractions (PVCs), and paroxysmal atrial tachycardia. His first intervention helped me more than any other — he recommended at least 32 ounces of an electrolyte drink daily, along with 500 mg of magnesium. I felt elated — the particular elation of someone long sick who finally feels better. After a while, however, it wasn’t enough, and he prescribed fludrocortisone (florinef). That made my feet swell so awfully that I developed blisters and couldn’t walk.

The cardiologist referred me to an electrophysiologist for my arrhythmia. That cardiologist put me on a beta-blocker. That also caused some milder foot and ankle swelling, but the relief it provided from decades-long tachycardia, palpitations, and an awful constant awareness of my heart was so welcome. It also reduced my PVCs. Again I felt hopeful and thought this might be the solution. It wasn’t. It temporarily and mercifully relieved some symptoms, but it did nothing to determine and address the true cause of my dysautonomia — which was thiamine deficiency. The beta-blocker eventually caused diarrhea. Because it didn’t happen at first, I didn’t associate it with the beta-blocker and neither did my doctors. The bout of diarrhea lasted 5 months. When I finally decided to quit the beta-blocker, the diarrhea ceased.

In the meantime, I was also dealing with a whole array of other issues: GI distress; food intolerances; peripheral vascular insufficiency (which led me to an unsuccessful and unnecessary surgery); chilblains; costochondritis; debilitating menstrual pain; and ever-looming, crushing fatigue.

Hypovolemia and Undiagnosed Thiamine Deficiency Almost Killed Me

At my lowest health point, my undiagnosed thiamine deficiency nearly killed me (via low BP and hypovolemia). I was at a lab getting a slew of blood tests ordered by my immunologist. I had requested that I be permitted to lie down for the blood draw, because I sometimes passed out otherwise. There was no room available for me, so the technician asked if I thought I could manage sitting up. I should have said no: big mistake on my part. I was sitting up in a chair with a kind of shelf clamped across me. I closed my eyes for the blood draw, and after just a short time felt the unmistakable onset of blacking out. I started to lose my vision and asked the technician to unclamp me from that chair so I could put my head between my knees. She seemed to have no grasp of basic medical knowledge, because she refused, saying she didn’t want my head down and to instead try to “stay with her”. I was unable to free myself because I could no longer see. Then I lost my hearing, and that’s all I remember. I fainted. Thank goodness my husband was there in the waiting room. They called an ambulance and then called my husband back to see me. He said I looked terrifying. Completely white, with white lips, and two techs trying to call me to. He told them they needed to put me flat on the floor. Inexplicably, they wouldn’t let him. He acted quickly and dragged a big box across the room and put my feet up on it. That made me come to. For a long time, I had cuts missing from my vision. I later asked my cardiologist if I would have had a stroke if my husband hadn’t intervened. The cardiologist was angry at what had happened and told me not only would I have had a stroke, I would have died.

Putting the Pieces Together: It Was Thiamine All Along

Like all chronically-ill patients, I had to rely on my own research to try to figure out how to improve my health. I first managed to help myself with some orthomolecular interventions. High-dose vitamin c was life-changing. After starting that and taking steps to support methylation, I was finally able to put on weight and muscle. By the age of 51, I was no longer underweight for the first time since early childhood. And I managed to raise my chronically low BP a bit. Fatigue was still overwhelming but then, gratefully, I came upon the research of Dr. Derrick Lonsdale and Dr. Chandler Marrs. I learned about beriberi, thiamine deficiency, and its relation to dysautonomia. I recognized myself immediately.

I read everything I could on the subject before starting to supplement thiamine. Because I had been so long deficient, I knew to expect a paradoxical response. I also knew, per Dr. Lonsdale, that a paradoxical response was a good indication that thiamine might help me. And it has. It has helped me immensely.

I started with thiamine HCL, 10 mg. Even that tiny dose gave me a paradoxical response. My fatigue became even worse, as did my heart issues — terrible palpitations and much more frequent arrhythmia. My ankles were more swollen than they had ever been. I felt shaky, tired, horribly fatigued. It was difficult and lasted about 2 months. Initiating thiamine supplementation in a patient long deficient causes a kind of refeeding syndrome. I continued titrating up my dose, very slowly, while taking supporting co-factors like magnesium and potassium and a b-complex.

Gains Made With Thiamine

  • Increased energy in general
  • Increased exercise tolerance
  • Raised BP by over 20 systolic points: huge gain for me. I am now regularly around 110/70. If I get exhausted by physical activity and/or stress, it drops again. (For years, my BP was around 79/56)
  • Heart rate normalized
  • Arrhythmia almost non-existent
  • No more heart palpitations after eating
  • Got rid of the constant awareness of my heart
  • Now able to walk rapidly
  • My ankles are rarely swollen now. They used to be swollen every day, particularly if I was active that day.
  • After 8 years, I no longer need to keep my feet elevated when sitting (cardiologist’s recommendation to counteract swollen ankles).
  • I am able to maintain mental clarity even after active or stressful events. Until very recently, I could not think clearly after a day of teaching — used to have to ask my husband to speak slowly and break down complex ideas into simple ones after I taught, because my fatigue affected my cognition. That’s gone now.
  • I very rarely get headaches at base of head (used to be almost daily)
  • No more costochondritis. This used to be a regular, painful complaint of mine. I was astonished to learn that costochondritis is caused by thiamine deficiency, especially since costochondritis is a common complaint in those who suffer connective tissue disorders.
  • I sleep through the night now, even if I was active that day. Until recently, if I was active — and in my limited-energy world, active might mean as little as attending a party — I would have great trouble falling asleep, and then I would awaken in the night after 4 hours of sleep and be awake at least 1 to 2 hours. That’s gone, and good riddance.
  • No more debilitating menstrual periods. I suffered enormous pain with my period for over 35 years. Thiamine treats primary dysmenorrhea.
  • Joint pain relief
  • No more stuffy nose at night when I’m exhausted
  • I wake up singing. I report this not as an indication of mood so much as an indication of energy — I simply never possessed the energy required to sing, at least not in the morning.
  • I wake up early now. Completely new.
  • I’m remembering my dreams again! (Couldn’t recall them for at least the past 5 years).
  • I rarely experience the dreaded “jelly legs”.
  • I am no longer cold all the time.
  • I now am able to sweat more normally.
  • Increased my left ventricular ejection fraction (EF) from 55 to 65 percent. Thiamine has been shown to improve EF in heart failure patients, and though I was never in heart failure, this is the first ever increase of my EF in 10 years, and it appeared after I began thiamine, so I suspect it’s related.

One thing that hasn’t gotten better yet is abdominal bloating. Hoping that improves eventually. I have low stomach acid and am working on that. And I still tire much easier than a normal person, but I’m so much better than I was, and I hope to continue improving.

Final Thoughts

My symptoms started at about the age of 10, which is the age I was when a dentist placed 10 large amalgam (mercury) fillings. A few years later, I got 5 more. Mercury causes vitamin and mineral derangement. (I have since gotten most of my amalgam fillings removed by a SMART dentist using a procedure to minimize mercury exposure.) There are indications that a thiamine deficiency heightens susceptibility to mercury toxicity. Many of the symptoms of mercury poisoning are observed in persons with thiamine deficiency. Additionally, there is a metabolic component to connective tissue disorders that most doctors do not recognize. Along with being diagnosed by a geneticist with MASS phenotype, another doctor (rheumatologist) diagnosed me with Ehlers-Danlos syndrome. Being diagnosed with both, even if not correct, has given me access to both cohorts of connective tissue patients, through online support groups. Most suffer from dysautonomia and have accepted this as genetic fate rather than something that can be improved through vitamin therapy. There is a great need to get the word out on thiamine and vitamin therapy to the chronic illness community.

I am deeply indebted to Drs. Lonsdale and Marrs for their research. It is giving me my life back.

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Image: Original painting by the author.

This article was published originally on April 19, 2021.

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Understanding Mitochondrial Energy, Health and Nutrition

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mitochondrial stress and energy

I live in a retirement community. In my everyday discussions with fellow residents, I find that the idea of energy metabolism as the “bottom line” of health is almost completely incomprehensible. Since my friends are all well-educated professional people, I came to the conclusion that few people really have an idea about energy. For example, we talk about people who indulge in physical sports being energetic, while people sitting behind a desk are classed as sedentary. What we fail to realize is that mental processes require even more energy than physical processes. Both physically and mentally active people consume energy, so it is obvious that some kind of attempt must be made to talk about energy as it applies to the human body.

Hans Selye and the Stress Response

I will begin by giving an outline of the work that was performed many years ago by a Canadian scientist by the name of Hans Selye. Originally he was a Hungarian medical student. Some of the teaching was done by presenting individual patients to the class of students. The professor would describe the details of the disease for each person. What interested Selye was that the facial expression of each patient appeared to him to be identical. He came to the conclusion that this was the facial expression of suffering, irrespective of the nature of the disease. He referred to this as the patient’s response to what he called “stress”. He decided to study the whole concept of stress. He immigrated to Canada and in Montréal he set up a research unit that came to be called “The Research Institute of Stress”.

Of course, Selye could not study human beings and his experiments were performed on literally thousands of rats. He subjected them to many forms of physical stress and detailed the laboratory and histological results. He found that each animal would begin by mustering the well-researched fight-or-flight reflex. If the stress was continued indefinitely, the metabolic resistance of the animal gradually decayed. He called this ability of the animal to resist stress the “General Adaptation Syndrome” and came to the conclusion that it was driven by some form of energy. If and when the supply of energy was exhausted, he found laboratory changes in blood and tissues that were listed carefully. Although extrapolating this information from animal studies, he ended up by saying that humans were suffering from “diseases of adaptation” and that they were the result of a failure to adapt to the effects of life stresses.

My addition to this is that it would have been better to describe them as “the diseases of maladaptation”, meaning that humans have to have some form of energy to meet life. If there is energy failure, disease will follow. The remarkable thing is that energy production in the human body was virtually unknown in Selye’s time, so his conclusion was a touch of genius. The mechanism by which energy is produced in the cells of the body is now well-known. We know that energy consumption is greatest in the lower part of the brain and the heart, organs that work 24 hours a day throughout life. The lower part of the brain that organizes and controls our adaptive capabilities is particularly energy consuming. So before we begin to think about energy as a driving force, let us consider what we mean by stress and how we adapt to it.

Human Stress: Surviving a Hostile Environment

We all live in an environment that is essentially hostile. We have to adapt to natural changes such as cold, hot, wet and dry. We are surrounded by enemies in the form of microorganisms and when they attack us, we have to set up a complex mechanism of defense. Add to this the possibility of trauma and the complexity of modern civilization, involving business and life decisions. We possess the machinery that enables us to meet these individual stresses, meaning that we are adapting. Health means that we adapt successfully and that is why “diseases of maladaptation” makes a lot of sense. Obviously, the key is that the machinery requires energy.

Energy Metabolism, Physics, and Chemistry

First of all, let us begin by trying to define energy. The dictionary describes it as “a force” and the only way in which we can appreciate its nature is by its effects. It is not a substance that we can see but the effects of light energy enable us to have vision. The old riddle might be mentioned; “Is there a sound in the forest when a tree falls?” The answer is of course that the only way that the resultant energy can be perceived is when it is felt by the human ear. Even that is not the end of the story, because the ear mechanism has to send a message to the brain where the sound is perceived. Thus, there is no sound in the forest when a tree falls. It is the perception of a form of energy, a force that impacts on the ear of any animal endowed with the ability to hear. Energy can be stored electrically in a battery or as heat energy in a hot water bottle, but the inevitable process is that the energy drains away. A hot cup of coffee cools. A battery gives up its stored energy and becomes just “another lump of matter”.

For example, if a stone is rolled up a hill, its natural tendency would be to roll down the hill again. Whatever force is being used to roll the stone up the hill is known as “potential energy”. In other words, there has to be a constant supply of energy as long as the stone is moving up a gradient against gravity. When it reaches the top, we say that the potential energy is being stored in the stone. It is the equivalent of electricity being stored in a battery. The “potential energy”, however, requires an electrical force to “electrify” the battery. The potential energy in the stone can be released by allowing it to roll down the hill and Newton called this kind of energy “kinetic” (the use of a force to produce movement). The force that is being used is of course the effect of gravity and the stone becomes stationary when it gets to the bottom of the hill. The use of gravity as the source of energy is simply wasted, but note that gravity has not changed. It is still available for use. Let us take a simple example of this energy being used for a purpose. Suppose that there is a wall at the bottom of the hill and a farmer wishes to create a gate. In a fanciful way he could use the stone to create a gap in the wall. The gap in the wall is the observable mark of the effect produced by consumption of kinetic energy.

The body consists of between 70 and 100 trillion cells, each of which has a special function. Each is a one-celled organism in its own right and in order to perform their function they need a constant supply of energy. This is developed by complex body chemistry. The “engines” in each cell are called mitochondria and one of their many different functions is to synthesize energy. The energy that is developed is stored in a chemical substance known as adenosine triphosphate (ATP) and in order to understand this a little more, perhaps we should think of the Newtonian analogy for comparison. The Newtonian hill is replaced by an electronic gradient and the stone by the chemical ATP

Of Mitochondria and ATP

Cellular energy is produced in the mitochondria by oxidative metabolism. This simply means that a fuel (glucose) combines with oxygen but, like any fuel, it has to be ignited. The best way to analogize that is to say that thiamine can be compared with a spark plug that ignites gasoline in a car. It “ignites” glucose. The resultant energy is used to add a phosphate molecule to adenosine three times to make ATP (the electronic gradient). We have “rolled an electronic stone up an electronic hill”. As the adenosine donates phosphate molecules, it becomes adenosine monophosphate (AMP) that must be “rolled uphill again”. As it is “rolling down the electronic hill”, it is transferring energy. Therefore, ATP can be thought of as an energy currency. Note that there must be a continuous supply of fuel (food) that must contain the equivalent of a spark plug (thiamine) in order to maintain an energy supply with maximum efficiency.

The loss of any one of a huge number of components in food that work in a team relationship with thiamine, lowers the energy maximum. That is why thiamine deficiency has been earmarked as the major cause of a disease called beriberi that has haunted mankind for thousands of years. Its deficiency particularly affects the lower part of the brain and the heart because of their huge energy demand. Since the lower brain contains the control mechanisms that enable us to adapt to the environment, as depicted above, it is easy to see that we would be maladapted if there is energy deficiency, just as Selye predicted. In fact, one of his students was able to produce a failure of the General Adaptation Syndrome by making his experimental animals thiamine deficient. It also suggests that a lot of heart and brain disease is really nothing more than energy deficiency that could be easily treated in its early stages. If the energy deficiency is allowed to continue indefinitely because of our failure to recognize the implications, it would not be surprising that changes in structure would develop and produce organic disease.

Health and Disease in the Context of Energy

With this concept in view, the present disease model looks antiquated. There are only three factors to be considered. The first one is obviously our genetic inheritance. If it is perfect, all it requires is energy to drive it. However, DNA is probably never perfect in its formation. It may not be imperfect enough to cause disease in its own right, but a slight imperfection would constitute what I call “genetic risk”, causing disease in association with a stressor such as an otherwise mild infection or trauma.

Suppose that a given patient died from an infection (think of the 2018 flu).The present medical model would place the blame on the pathogenic virulence of the virus without considering whether malnutrition played a part by failing to produce sufficient energy for the complex immune response. Therefore, the second factor to be considered is the perfection of the fuel supply and that obviously comes from the quality of nutrition. Stress (the viral attack or non-lethal trauma) becomes the third consideration, since we have shown that an adequate energy supply is required for adapting on a day-to-day basis. There is even a new science called epigenetics in which it has been shown that nutrient components can be used to upgrade genetic mistakes in DNA. A fanciful interpretation of these three factors, genetics, nutrition and stress can be portrayed by the use of Boolean algebra. This is a mathematical representation as interlocking circles. The area of each circle can be easily assessed, marking their relative importance. The interlocking area between any two of the three circles and that of the three circles together completes the picture. It becomes easy to perceive how a prolonged period of stress can impact health. The present flu epidemic may be an example of the Three Circles of Health in operation, explaining why some people have only a mild illness while others die. Could the appalling nutrition in America play a part?

Why Thiamine

The pain produced by a heart attack has always been a mystery in explaining why and how it occurs. The answer of course is that pain is always felt by sensory apparatus in the brain. The brain is able to identify the source of the signal as coming from the heart but cannot interpret the reason. I am suggesting that in some cases, the heart is having difficulties from energy deficiency and notifying the brain. A coronary thrombosis would introduce local energy deficiency, but other methods of producing energy deficiency would apply. It is logical to assume also that brain disease is a manifestation of cellular energy deficiency. That is why I had found that so many children referred to me for various mental conditions responded to megadoses of thiamine. It is also why I had found that so much emotional disease was related to diet and not to poor parenthood.

I recently came across a patient that I had seen many years ago when he was a child. He had a diagnosis of Tourette’s syndrome, made elsewhere. I treated him with megadoses of thiamine and his symptoms resolved completely. Medical skepticism would answer this by calling it a placebo effect, but since this effect is well-known, it must have a mechanism. For many years I have believed that therapeutic nutrition “turns on” this effect by enhancing cellular energy. A small group of physicians known as “Alternative Medicine Practitioners” use water-soluble vitamins, given intravenously, irrespective of the acceptable clinical diagnosis. For example, I remember a young woman who came to see me with a diagnosis of “Thrombocytopenic Purpura”. This disease is a loss of cellular elements known as platelets and it had resisted orthodox treatment for years. I gave her a series of intravenous injections of water soluble vitamins with complete resolution of the problem. I must end by stating that healing is a function of the body. The only way that a healer can be justifiably recognized is by supplying the body with the ingredients that it requires to carry out the healing process. Perhaps spontaneous healing, as for example initiated by religious belief, is an ability to muster those ingredients that are present, but hitherto unused.

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More people than ever are reading Hormones Matter, a testament to the need for independent voices in health and medicine. We are not funded and accept limited advertising. Unlike many health sites, we don’t force you to purchase a subscription. We believe health information should be open to all. If you read Hormones Matter, like it, please help support it. Contribute now.

Yes, I would like to support Hormones Matter. 

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This article was published originally on February 14, 2018.

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Severe Gut Dysmotility, Dysautonomia, and Malnutrition

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Severe gut dysmotility

History of Gut Pain and Epigenetic Malnutrition

I am 32 years old and have suffered from ill health all of my life. From as long as I can remember, I’ve experienced gut pain, fatigue, and hyper-sensitivity. If there was something to catch, I would catch it. I react to everything and suffer chronic gut and nerve pain.

As a young child, I had chronic abdominal pain in the lower right quadrant and would often be buckled over in pain. Doctors thought it was appendicitis so removed my appendix but the pain continued. I was chronically tired and sensitive to the cold. I would struggle to get up in the morning to go to school and would stand in the shower dousing myself in hot water for as long as I could to warm up my body. Cold hands and feet has continued into adulthood.

I was born into a family that struggled with spine, neck, head, and gut issues. I was raised on cow’s milk and barley formula as my mother was unable to breastfeed. My mother and aunt had Ehlers Danlos Syndrome. I was diagnosed with it 8 years ago. My mother has Arnold Chiari malformation, my aunt scoliosis. They were post-war children. My grandmother had spinal issues and likely was very deficient in the B Vitamins. My grandfather, aunt and mother all suffered from gut issues, my grandfather eventually dying from bowel cancer. He was sensitive to many foods, particularly FODMAP rich ones.

I had many allergies – dust mite, grass, cow’s milk etc. I suffered an adverse reaction to the MMR vaccine when I was eight – with an intense full body rash. I was bedridden with intense fatigue for two weeks. Around the same time, tests found huge numbers of the parasite dientamoeba fragilis (D fragilis) in my stool. Dientamoeba fragilis together with Blasto hominis, another intestinal parasite, have been found in large numbers in my stool ever since. Despite trying many things, I’ve never been able to get rid of them.

Increasing Food Sensitivities, Weight Loss, Amenorrhea, and Osteoporosis

By the age of ten, I was struggling with depression and increasing sensitivities to many foods – particularly gluten and dairy. The only thing that seemed to help was exercise. I played competitive soccer, did cross-country and athletics and rode my bicycle everywhere. At this time, I started becoming vegetarian, in response to my growing concern about the state of the world, animal cruelty and the environment. This meant consuming a lot of gluten and dairy based foods. As I entered puberty, my body couldn’t keep up with the energy demands of this stage of development and I began losing weight rapidly, despite eating a ton of carbs.

I was working hard at school, and have always pushed myself to succeed, but as my body became more and more unwell, I struggled with focus and concentration. My depression became worse and the world felt very bleak. Everything I ate caused pain, bloating, and fatigue. I was eating lots of pasta and cheese to try to fuel my sports but I continued to lose more and more weight. Throughout my parents had been doing everything to investigate and treat the cause of the illness, but I just kept getting more and more unwell. My weight dropped dangerously low, I developed bradycardia and I struggled to think clearly.

The years passed through adolescence and into early adulthood. Through sheer willpower and making myself eat, despite the intense pain it caused, including severe abdominal cramping, sulfur gas, burning, over-heating, swelling, headaches and more, I could get some extra weight on for a while, but it would quickly fall off again. My growth and development suffered. My bones froze in time – a bone age at 19 showed the bones thought they were 13. I had amenorrhea. I developed osteoporosis. An endoscopy showed an inflamed caecum and inflammatory spots in my sigmoid colon.

Through my teenage years and twenties, I had to follow extremely restrictive diets. I had to quit being vegetarian, as it didn’t leave anything to eat and my body clearly needed nutrients from animal foods to survive. I reacted to FODMAPs, histamines, too much fat, too many carbs – there was so little I could eat without feeling extremely unwell.

I would often experience intense nausea attacks, severe bouts of sudden pelvic pain, stomach bugs, and caught giardia several times. I got shingles at the age of 21, a strange fever induced by tick bites at 22, and viral meningitis at the age of 26.

Gut Dysmotility, Progressive Neuropathy, and Migraine

My gut was becoming lazier and lazier. At the age of 23, I wound up in emergency in extreme abdominal pain after it stopped moving altogether and my intestines became fully impacted. The pain was excruciating. Eight sachets of heavy duty laxatives did nothing to the situation. I was started on prucalopride (an enterokinetic drug) to help get it moving again. I cannot function without this drug now. When I stop taking it, my gut ceases to move altogether.

Through my twenties, I also started suffering from tingling in my arms and legs and increasing peripheral neuropathy. By the age of 27, I would experience episodes where an entire arm or leg was completely numb. Blood work showed my B12 had dropped very low. I went on B12 injections and increased food sources of B12. Things improved for a while but then the neuropathy returned. I subsequently developed Reynaud’s syndrome.

Around the same time, I started developing worsening headaches and a few years later migraines. The migraines were so bad I couldn’t move without intense vertigo and extreme nausea. I had to lie in a pitch dark room and wait it out. Some migraines were preceded by a confusional aura where I couldn’t tell what anyone was saying to me. I could understand the individual words but not when they were strung together in sentences. The vertigo continued for about 6 months.

Exercise became more painful too. Despite being fit, I would suffer from intense DOMS, headaches and nausea after running. Muscles started becoming more and more sore and painful despite taking electrolytes, being careful about my nutrition and warming up and down.

I woke up every morning feeling exhausted and sleep studies revealed I had developed sleep apnea – something I had thought wasn’t so common in women of my age and build.

Stress Fractures, Worsening Neuropathy, and Hypoxia

Earlier this year, I wound up with a bad stress injury in my hip – several stress fractures in my femoral neck despite no blow to the area and no fall – which doctors thought quite unusual for someone of my age who was running low mileage recreationally. The injury brought with it chronic nerve pain along my right side on top of worsening neuropathy.

I would wake up in the middle of the night with numb limbs. Nerves would fire spontaneously in my legs and arms. Nerves in my jaw felt constantly stimulated and my tongue would swirl uncontrollably around in my mouth. My gut stopped moving more and more frequently and I would have to take laxatives regularly to clear it out.

I had severe GI burning and was unable to eat anything other than clear broth and coconut water without pain. An endoscopy found bleeding in my sigmoid colon. My hemoglobin dropped 17 points and I struggled with breathlessness, unable to get up a flight of stairs or even walk a few hundred meters without feeling deeply exhausted.

To date, I have been diagnosed with POTS, Ehlers Danlos Syndrome, dysautonomia, gastroparesis,  severe osteoporosis of the lumbar spine, and peripheral neuropathy. This comes against the backdrop of  the gut problems experienced since childhood. These other health issues were, to no small degree if not caused, then significantly worsened by my gut issues. I have had long periods of time where I couldn’t absorb food or eat very much due to my gut problems, so I have been underweight for most of my life. As a result, I am likely deficient in many nutrients.

Current Diet, Activity, and Recent Testing

Diet

  • Breakfast: steamed greens (e.g. some combo of broccoli, beans, spinach, asparagus, etc.), 1-1.5 scrambled organic egg, 1 cup bone broth with 1 desert spoon collagen peptides + 1 desert spoon seaweed.
  • Lunch: 1 cup bone broth with 1 desert spoon collagen peptides + 1 desert spoon seaweed with 1 egg yolk stirred through OR some homemade chicken liver pate on carrot sticks instead of the egg yolk; 1 raw carrot and/or raw cucumber sticks; sometimes 1 packet of roasted nori.
  • Snacks: 1 glass homemade carrot, celery and ginger juice; some blueberries and/or a kiwi fruit.
  • Dinner: some protein (e.g. half a single piece of salmon, 8 prawns, small amount of red meat), green veggies (e.g. steamed beans, asparagus, spinach, broccoli), a starchy veggie (e.g. pumpkin, sweet potato, beetroot), sometimes some green salad.
  • After dinner: a few blueberries and/or pieces of mandarin, 30-40g vegan carob (cocoa butter, carob powder, no sugar), a cup of herbal tea.

Activity and Exercise

  • Daily: walking – approx. 12-13km over the course of a day including daily activities, as measured on Fitbit.
  • Running: 3x per week – currently at 9km total over the week; very slow 6’20” pace.
  • Yoga: 2x per week 1hr classes – beginner.
  • Physio: 3x 20-25min per week – core exercises for lower back, hips, shoulders etc as set by exercise physiologist.

Recent Testing

These tests were conducted by RN Labs and Great Plains Laboratory before I began thiamine.

Stool – GI-360

  • Klebsiella pneumoniae – very high
  • Proteobacteria – very high
  • Akkermansia muciniphila – very high
  • Escherichia spp. – very high
  • Bacteroides spp. – very high
  • Endolimax nana – very high
  • Eubacterium siraeum – very high
  • Enterobacter cloacae – high
  • Elastase – low
  • Butyrate – low
  • Clostridia – very low
  • Faecalibacterium prausnitzii – very low
  • Veillonella spp. – very low
  • Secretory IgA – very low

Urine – Organic Acid Test

Yeast and fungal markers:

  • 3-Oxoglutaric – 0.69 (<0.33) – Elevated levels of 2-Oxoglutaric suggest dietary vitamin deficiencies or supplementation with 2-ketoglutaric acid. Coenzyme A (derived from pantothenic acid), flavin adenine dinucleotide (FAD) (derived from riboflavin), and thiamine are required for conversion of 2-oxoglutaric acid to succinyl-CoA.
  • Arabinose – 70 (<29) – Urinary levels higher than the reference range may simply reflect a high dietary intake of these fruits. However, arabinitol (which converts to arabinose) is also documented to be produced by the Candida genus of yeast. When elevated in body tissues, it can link with lysine and arginine. In theory, this may block some binding sites for coenzyme pyridoxal phosphate, biotin or lipoic acid at the lysyl residue in apoenzyme proteins. This would impair enzymatic processes, such as transamination of amino acids (in spite of “normal” intake of vitamin B6). A finding of high arabinose, without dietary intake of the above-mentioned fruits, suggests a stool analysis or other tests/examinations for Candida overgrowth.
  • Tricarballylic – 2.3 (<0.44) – Tricarballylic acid is a chemical by-product released from fumonisins during passage through the GI tract. Fumonisins are fungal toxins produced primarily by F. verticillioides. Tricarballylic acid is an inhibitor of the enzyme aconitase and therefore interferes with the Krebs cycle.

Bacterial markers:

Oxalate metabolites:

  • Glyceric – 16 (0.77-7) – High glyceric levels on an organic acids test usually relates to primary hyperoxaluria type 2.
  • Oxalic – 389 (range = 6.8-101) – High oxalic with or without elevated glyceric or glycolic acids may be associated with the genetic hyperoxalurias, autism, women with vulvar pain, fibromyalgia, and may also be due to high vitamin C intake.

Glycolytic Cycle Metabolites:

  • Lactic – 51 (<48) – Elevated by a number of nonspecific influences, such as vigorous exercise, bacterial overgrowth of the GI tract, shock, poor perfusion, B-vitamin defciency, mitochondrial dysfunction or damage, and anemia, among others.

Mitochondrial Markers – Krebs Cycle Metabolites:

  • Succinic – 24 (<9.3) – The most common cause of elevated succinic acid is exposure to toxic chemicals which impairs mitochondria function.
  • Malic – 2.7 (0.06-1.8) – Higher levels of malic acid in urine indicates inefficiencies in energy production. Elevated malic acid values suggest increased need for niacin and CoQ10. When malic acid is simultaneously elevated with citric, fumaric, and alpha-ketoglutaric acids, it strongly suggests cytochrome C oxidase deficiency, indicating dysfunction in the mitochondrial energy pathways.
  • Aconitic – 6.6 (6.8-28) – Elevated in mitochondrial disorders. Aconitase metabolizes citric and aconitic acids, and is dependent on glutathione. Increased levels may indicate additional requirement for reduced glutathione.

Neurotransmitter Metabolites:

  • HVA / VMA Ratio  – 2.3 (0.16-1.8) – An elevated ratio is often the result of decreased conversion of dopamine to norepinephrine by the enzyme, dopamine beta-hydroxylase. This inhibition is commonly caused by Clostridia by-products, including HPHPA, 4-cresol, and 4-hydroxyphenylacetic acid, which are also measured in the OAT.
  • Dihydroxyphenylacetic (DOPAC) – 3.9 (0.08-3.5) – DOPAC levels may be elevated due to inhibition of dopamine beta hydroxylase (DBH) from Clostridia metabolites, the mold metabolite fusaric acid, pharmaceuticals such as disulfiram, food additives like aspartame, or to deficiencies of the DBH enzyme due to copper deficiency, vitamin C deficiency, or malic acid deficiency.
  • Quinolinic – 0.58 (0.85-3.9)

Ketone and Fatty Acid Oxidation:

  • 3-Hydroxybutyric – 5.7 (<3.1) – A moderate urinary increase in 4-hydroxybutyric acid may be due to intake of dietary supplements containing 4-hydroxybutyric acid, also known as gamma-hydroxybutyric acid. Very high levels may indicate the genetic disorder 3-methylglutaconic aciduria involving succinic semialdehyde dehydrogenase deficiency.
  • Acetoacetic – 32 (<10) – High levels of acetoacetate in blood may result from decreased availability of carbohydrates (eg, starvation, alcoholism) and/or abnormal use of carbohydrates storage (eg, uncontrolled diabetes, glycogen storage diseases).
  • Methylsuccinic – 5.7 (0.1-2.2) – Very elevated values may indicate a genetic disorder. Fatty acid oxidation defects are associated with hypoglycemia, and lethargy. Regardless of cause, intake of dietary supplements containing L- carnitine, or acetyl-L-carnitine may improve clinical symptoms.
  • Sebacic – 0.39 (<0.24) – Sebacic acid is a breakdown product of fatty acids. Higher levels can be seen when the breakdown of fats is impaired or blocked. May be associated with Vitamin B2 (aka Riboflavin) deficiency. Riboflavin is needed for fatty acid breakdown.

Nutritional Markers:

  • Vitamin B2 – 0.38 (0.04-0.36)
  • Vitamin C – 598 (10-200)

Discovering Thiamine

During this time, I was fortunate enough to learn about the work of Dr. Lonsdale and Dr. Marrs and have started talking high dose Lipothiamine. After several months, the chronic nerve pain is reducing and my gut has improved somewhat however I still struggle with pain and am very sensitive to a lot of foods.

I also have been learning more about the role of genetics and epigenetics in my condition. I am compound heterozygous for the MTHFR mutations and also have SNPs of the PEMT, NOS3, COMT, MOAB, GST genes alongside a number of other SNPs (including CYP, PONI, GAD, GGH, HTR2A, MMAB, NAT2, SLC, SULT, ALD, CBS, DHFR, MTR, TCN1, CBS, DDC, DRD and more).

I am currently taking 1000mg of Lipothiamine orally per day. If IV was possible, I would do that given my gut problems, but we have not been able to find anyone able to administer that here in Australia. In addition to the Lipothiamine, I take magnesium (800mg), liposomal Vitamin C (6000mg), glutathione (450mg), probiotics, a multivitamin, cod liver oil, B-complex, Alpha Lipoic Acid, zeolite, zinc and methylated b12 (shots occasionally and drops in between).

I follow the Auto-immune Protocol diet (including all fresh, unprocessed food, no sugar, lots of veggies and fruits, organic fish, meat, eggs, etc.), walk daily, practice yoga, meditation, daily stretching and gentle jogging a few times a week.

Improvement with Thiamine and Outstanding Questions

In recent weeks, I’ve been finding the nerve pain has significantly improved on this high dose (1000mg) of Lipothiamine however my gut symptoms are quite bad – with a lot of GI burning. I experienced this when I first started taking the Lipothiamine but it subsequently subsided so I am unsure if this is something I need to just push through or if I am on too high a dose.

I would love to hear others experience and hope that sharing mine is of use to others. I am deeply grateful to Dr. Lonsdale and Dr. Marrs for their groundbreaking work in this area and hope to do whatever I can to spread the word about this vital information so that more people can experience full health and happiness in their lives.

We Need Your Help

More people than ever are reading Hormones Matter, a testament to the need for independent voices in health and medicine. We are not funded and accept limited advertising. Unlike many health sites, we don’t force you to purchase a subscription. We believe health information should be open to all. If you read Hormones Matter, like it, please help support it. Contribute now.

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This story was published originally on December 14, 2020.

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Progressive Deterioration of Health With Severe Nutrient Deficiency

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This is the story of my wife’s decline in health following the surgical reconstruction of a torn left hip labrum. I am writing this for my wife because her health has declined so significantly over the past 5 years that she has become medically homebound and bedridden. She is too weak and unbalanced to walk, has become intolerant to light, to foods (she can only eat 10 different foods without having a reaction), to smells, and is in constant and extreme pain. She has also developed severe skin reactions that are destroying her lower extremities. After seeing more than 50 doctors with little to offer, we are posting her story here in the hope that someone will be able to help.

Post-surgical Development of Complex Regional Pain Syndrome

Megan is a 44 year old female who was athletic, very active, and physically fit her whole life. Prior to left hip labral reconstruction on 6/20/2017, Megan did not take a single prescription. She led a very healthy lifestyle, in which she enjoyed playing tennis, doing yoga, swimming, biking, snowboarding, running, hiking, camping, and backpacking regularly. Postoperatively, she developed left foot edema, redness, allodynia, hyperalgesia, diminished proprioception, and balance, and burning pain in her left foot. Despite diligently participating in physical therapy 3 times weekly, she was not able to fade off of her crutches. She continued to have severe lower extremity pain and was diagnosed with Complex Reginal Pain Syndrome (CRPS) on 11/1/2017. In December 2017, Megan participated in an FDA-approved clinical trial of neridronic acid (bisphosphonate) infusions for CRPS without relief. She developed flu-like symptoms, which got progressively worse after each infusion, but eventually resolved.

Skin Manifestations

By January 2018, Megan started to develop lesions on her left foot. Initially, they were pinpoint to large flat lesions. Some of them were extremely itchy. Overtime, the lesions and rash spread up her ankle and shin on her left leg.

Skin and vascular manifestations of nutrient deficiency
Left foot edema and skin lesions May 2018 (left), June 2018 (right)

Over the next several months, while still attending physical therapy, Megan noted a lack of hair growth on her lower left leg, temperature discrepancies, in which the left foot was subjectively hot but objectively cooler than the right foot, blood pooling, and skin discoloration in her feet (dark red/purple) when standing, nail changes, and bilateral lower leg flushing following a warm shower. During this time, food sensitivities were also first observed – initially with beef and shrimp.

More Diagnoses But Little Help

In October 2018, Megan was evaluated by a physician at Brown Medical School, who is an expert with CRPS. He confirmed the diagnosis of CRPS (bilateral lower extremities) and in his provisional assessment of Megan, also diagnosed her with bilateral common peroneal neuralgia and bilateral foot drop. He also suspected Megan has mast cell activation syndrome (MCAS), orthostatic intolerance/dysautonomia (POTS), and hypermobile type Ehlers-Danlos Syndrome (hEDS) and was able to delineate which symptoms were consistent with CRPS and which were not. He did not attribute the blood pooling, the footdrop, flushing, lesions, rash, food intolerances and allergic-like reactions, dermographia, and other skin manifestations to CRPS. He recommended she be evaluated by another physician at the Steadman Clinic to assess for common peroneal nerve entrapment.

In October 2018, the Steadman doctor concluded that Megan did not have a common peroneal nerve entrapment. Instead, he noted irritations in the saphenous and obturator nerve distributions and diagnosed her with “bad luck”. He recommended Megan have an MRI of her lower back to ensure there is no central based pathology contributing to her bilateral symptoms. A lumbar MRI was conducted, which yielded no significant results.

Catastrophic Progression of Symptoms

All symptoms started after an orthopedic surgery on the left hip. Prior to the surgery on June 20th, 2017, there is no significant medical history. She had a clean bill of health prior to surgery – no prescriptions were taken, no known allergies. In April 2018, we learned the hospital that performed the surgery was not properly sterilizing the surgical instruments and operating rooms between surgeries, which resulted in numerous infections, injuries, and illnesses, per an investigation.

New symptoms, which have appeared in the last 24-36 months include: heavy sweating, bladder incontinence (especially after eating and some while sleeping), sudden urge to urinate, sudden urge to drink water, decreased vision, extremely dizzy, and feeling lightheaded when standing. Brain fog has been getting progressively worse. Food reactions and extreme sensitivity to stimuli have been getting progressively worse and more frequent. Menstrual cycles have been getting progressively worse – worst symptoms and highest pain are observed during the cycle. Food reactivity is more likely and worse while menstruating.

Current treatment approaches have not resulted in any lasting or significant improvement. Despite intervention, symptoms have gotten progressively worse. Megan has been medically homebound since 2019.

Large patches of skin peel, turn white, and flake off ankles, shins, and legs below the knees. Clusters of tiny “pin prick” lesions appear on tops of both feet and on legs, including thighs. There is a lace-like pattern of purple/brownish skin discoloration above the knees (Livedo Reticularis), which continues up the thighs. The lesions, rash, and discoloration have been progressing up both legs. Skin/tissue on feet appear purple, blue, red, pink, orange, discolored, and shiny in places. There is no hair growth on both legs below the knees. Toenails on both feet are thick, crumbly, extremely brittle, and yellowish/brown. There is little to no growth of toenails.

Progression of skin symptoms over time. Left- April 2022; middle and right – December 2022

Feet and legs appear less reddish and flushed when elevated, however, they quickly turn purple upon standing. The purple discoloration fades when feet are elevated. Flushing is also present after showering and with temperature changes. Edema is present in both feet, ankles, shins, calves, and knees. An extremely painful, deep “itch” is felt in both feet and lower legs. Tremors are present throughout both legs. Standing upright elicits dizziness, tachycardia, presyncope/syncope, heart palpitations, and blurry vision (especially after eating).

Bilateral footdrop is present without a known cause. As a result, walking is exceedingly difficult, and assistance is required to move throughout the house. Balance, motor planning, proprioception, coordination, and gait have all been dramatically impacted. A wheelchair/transport chair is currently being utilized for community access.

Excruciating 9/10 pain in feet and lower legs. Hyperalgesia and allodynia observed. Socks, shoes, and any other clothing/materials are no longer tolerated below the knees due to pain. Severe 8/10 “deep bone pain” in lower legs and shins. Severe 8/10 joint pain in shoulders, hips, knees, hands, fingers, ankles, and wrists. Muscle spasms and tremors (lower back/body), stiffness, and weakness in legs and arms. It is now difficult to type and to write due to pain in wrists, hands, and fingers. Lights, sounds, touch, and weather/pressure changes cause significant 7/10 pain.

Diet is currently limited to about 10 foods (has decreased over time) due to allergic-like reactions that occur immediately after and while eating foods. The severe reactions have resulted in 3 trips to the emergency room. Foods frequently cause swelling to the face, eyes, and lips, dizziness, nausea, excessive eye dripping and tearing, excessive post-nasal drip, and an extremely painful deep itch with a rash and “pinpoint” lesions to appear on legs and feet. Eating also evokes sweating, extreme fatigue, and tachycardia. Only fresh food is consumed. Leftovers are frozen immediately. The family has not been able to cook inside for over 3 years due to serious respiratory distress, reactions, and irritations to eyes, ears, and throat caused by smoke, scents, and odors. In addition to scents, there is an extremely heightened sensitivity to light and sound. Socks, shoes, and any other clothing/materials are no longer tolerated below the knees.

Nutrient Deficiencies

Over the last year, we have learned that Megan suffers from several nutrient deficiencies, including thiamine, which was measured at only <6 nmols/L in December. After stumbling upon a case story about thiamine deficiency here, it is difficult not to wonder if low thiamine was responsible for her rapid decline in health following the surgery. Many of the symptoms she developed immediately following the surgery, the muscle weakness, edema, foot drop, proprioceptive difficulties are indicative of low thiamine. Over time, she developed an intolerance to most foods, which, from what I understand, is also common with thiamine deficiency. This then spiraled into other sensitivities (light, sound, and scent, etc.) and other sets of bizarre symptoms. In fact, as I do the research, I am learning that many of her ‘diagnoses’ are not independent diseases but could actually be manifestations of the low thiamine.

Of course, as her health declined and her ability to safely tolerate foods also declined, other deficiencies likely came into play. The skin issues may be related to deficiencies in vitamin A, which we have tested, and vitamins D and K, which we have not yet tested. She is also severely deficient in vitamins B12, C, and has low iron, copper, and zinc. Each of these can contribute to a wide variety of symptoms and compound her already poor health.

  • Copper Deficiency 2/16/22
  • Ferritin Deficiency 3/8/22, 8/12/22
  • Zinc Deficiency 8/12/22
  • Vitamin C Deficiency 8/12/22
  • Vitamin A (Retinal) Deficiency 12/9/2022
  • Vitamin B1 (Thiamine) Deficiency 12/9/2022
  • Vitamin B12 (Cobalamin) Deficiency 12/9/2022

Current Symptoms

  • General: heavy fatigue, migraines, low-grade fever, flushing, swollen lymph nodes, night waking, early waking, difficulty falling asleep, and daytime sleepiness
  • Eyes: droopy eye lids, blurry vision, eye dripping, and excessive tearing
  • Ears/Nose/Throat: hoarseness, stuffiness, sore throat, postnasal drip, heightened sense of smell, sinus pressure, ear ringing and buzzing, headache, migraines, sensitivity to loud noises, sores/ulcers on the roof of mouth and tongue, swelling of face/lips/throat, and lips/throat feeling “tingly”
  • Heart: tachycardia, palpitations, swollen ankles/feet, edema, and blood “pooling” in legs
  • Respiratory: shortness of breath/breathlessness, coughing, and wheezing
  • Gastrointestinal Tract: bloating, cramping, acid reflux, alternating diarrhea and constipation, excess flatulence/gas, indigestion, nausea, and poor appetite
  • Urinary Tract: the sudden urge to urinate, and mild bladder leakage/incontinence
  • Musculoskeletal: muscle spasms, tremors, cramps, joint pain, joint stiffness, and muscle weakness
  • Skin: rashes, hives/welts, hair loss, itching, swelling, skin peeling and flaking, livedo reticularis, excessive sweating, “pinpoint” lesions, flat-reddish lesions, and dermatographia
  • Endocrine: cold intolerance, heat intolerance, urge to drink water, abnormally heavy/difficult menstrual periods, chills, and shaking
  • Neurology: difficulty concentrating, difficulty thinking, difficulty balancing, brain fog, dizziness, light-headedness, tingling, and tremors

Previous Medical History

  • Infected with Epstein-Barr/mononucleosis: 1993
  • Pityriasis Rosea in 2011
  • Infected with antibiotic resistant strep throat in 2012
  • Left hip labral tear in 2016
  • Right hip labral tear in 2016
  • Erythema ab igne (due to heating pad) in 2017
  • Left hip arthroscopy on 6/20/2017
    • Femoral osteoplasty
    • Mild acetabular rim trimming
    • Minor shaving chondroplasty
    • Acetabular labral reconstruction – transplanted labrum made from 11cm graft (cadaver tissue)
    • Capsular closure
    • Arthroscopic greater trochanteric bursectomy
    • Windowing of IT band
    • PRP injection
  • FDA Clinical Trial of Neridronic Acid for CRPS 12/2017

Current Diagnoses

  • Right hip labral tear, FAI/CAM Impingement, Bursitis, 2016
  • Complex Regional Pain Syndrome (CRPS) 11/1/2017
  • Suspected Ehlers-Danlos Hypermobile Type (hEDS) 10/1/2018
  • Suspected Histamine Intolerance/Mast Cell Activation Syndrome (MCAS) 10/1/2018
  • Bilateral Footdrop 10/1/2018
  • Bilateral Common Perineal Neuralgia 10/1/2018
  • Orthostatic Intolerance/Dysautonomia (POTS) 10/1/2018
  • Alternaria Alternata allergy 11/13/19
  • Secondary Polycythemia 1/5/2020
  • Hashimoto’s Thyroiditis 9/14/2021
  • Tinea Pedis Onychomycosis 12/2/2021 (misdiagnosed and overlooked for at least 2 years)
  • Elevated Leukotriene 2/16/22
  • Dysautonomia/Postural Orthostatic Tachycardia Syndrome (POTS) 9/6/2022

Current Medications

(updated 1/15/23)

Morning

(Before breakfast)

 Evening

(Before dinner)

 Late Evening

(Before bed)
Naltrexone (LDN) 4.5 mg Vitamin C 1000 mg Metoprolol 12.5 mg
Singulair (Montelukast) 10 mg Zinc (sulfate) 25 mg Neurontin (Gabapentin) 300 mg
Aspirin (NSAID) 81 mg Copper 2 mg Vitamin B1 (Thiamine) 100 mg*
Tagamet (Cimetidine) 200 mg Iron 50 mg Topical Terbinafine Cream (PRN)
Zrytec (Cetirizine) 10 mg Tagamet (Cimetidine) 200 mg  
Synthroid (Levothyroxine) 50 mcg Zrytec (Cetirizine) 10 mg  
Quercetin 500 mg Quercetin 500 mg
Neurontin (Gabapentin) 300 mg Vitamin B1 (Thiamine) 100 mg*  
Vitamin B1 (Thiamine) 100 mg*  

*Vitamin B1 (Thiamine) started 12/23/22

Previous Medications

Short-term Prednisone (following ER Trip) provided significant relief of pain, skin rash, lesions, reduced swelling, and allowed more foods to be tolerated. Produced significant improvement of symptoms.

  • Ketotifen – This medication was introduced and then discontinued due to potential side effects and lack of progress. Megan was taking 1 mg
  • Cromolyn – This medication caused mouth ulcers (white spots) to occur, and it was discontinued. A nebulized form was prescribed but given without instructions as to how to introduce.
  • Xifaxan – 10-day antibiotic course completed on 7/18/22 without improvement

We Need Your Help

More people than ever are reading Hormones Matter, a testament to the need for independent voices in health and medicine. We are not funded and accept limited advertising. Unlike many health sites, we don’t force you to purchase a subscription. We believe health information should be open to all. If you read Hormones Matter, like it, please help support it. Contribute now.

Yes, I would like to support Hormones Matter.

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The Red Thread and Thiamine

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thiamine red thread

There is a saying in China about a Red Thread connecting people who are destined to meet and/or help one another in a profound way no matter how far apart they may be. Our adopted daughter Abby is that red thread. Abby was abandoned and found on the day our oldest daughter, Kayla, turned thirteen. It was at this time Kayla’s health issues were becoming worse. Although we didn’t know exactly what was amiss, we knew that something was wrong. In our efforts to help Abby, our family’s health issues were brought into stark relief. It seems that all of us have suffered from longstanding thiamine insufficiency. Even though my two daughters were born worlds apart, that red thread connects us. We published Abby’s story last week in the hopes that it might help someone else. Here is Kayla’s story.

Unhealthy Beginnings for My Beautiful Daughter: IVF and Induction

Common sayings like ‘you are what you eat’ can be haunting, leading to guilt when we see our children suffer the consequences of our own ill health, especially during pregnancy. My gut was messed up and had been for a very long time before becoming pregnant. I was likely deficient in thiamine and other nutrients and perhaps that is why I struggled to get pregnant in the first place. Sometimes gut dysfunction is obvious, as with constipation or diarrhea, but more often it manifests itself in other ways. That was me. I had/have Ehlers Danlos Syndrome (EDS) and most likely also, Mast Cell Activation Syndrome (MCAS) and Postural Orthostatic Tachycardia syndrome (POTS). I did not know any of this though before pregnancy and have only recently, after hours upon hours of research, come to learn how my health impacted my daughter’s health.

Kayla was our first hard-fought-for child. We were married 10 years and had undergone numerous fertility treatments before we finally achieved a successful IVF. Looking back, I realize that I was not healthy prior to or during my pregnancy, even so it was mostly an uneventful pregnancy with little to no typical unpleasantries. I had low progesterone early on that required progesterone injections and suppositories, but after 13 weeks everything stabilized. I had a high blood pressure reading at only one routine visit in my 39th week. The doctor decided to induce. We didn’t question it at the time, but later did. At the hospital, he administered Pitocin, a synthetic oxytocin, without any nurses in the room and left.  The nurses later commented that they were surprised, since my blood pressure was back in the normal range upon admission. Pitocin is just one of my regrets. Why was my body not triggering labor? Gut dysbiosis? Maybe/possibly/probably or maybe she just wasn’t ready to come out.

A Truly Gifted Child

Kayla was an extremely bright child. She wanted to learn chess at four years old. By age 9, I stopped playing with her because she always won. She gave her math brilliant-grandfather a run for his money.  She was homeschooled through 9th grade followed by private and then public school. She was a straight ‘A’ student, participated in various athletics (swim, track, dance, horse riding, etc.) and mastered two musical instruments by the end of high school. Kayla ranked in the top 5th percentile nationally and did well in first semester of college, but little did we know how precarious her health had become. Perhaps because of her intelligence and achievements, many of her health issues and difficulties were disregarded by physicians. On the surface, she looks well. She is very high functioning, but she has been plagued with an assortment of complicated and largely unrecognized health and neurological issues since birth. During her first semester of college, a series of stressors brought her health crashing down and she is only now beginning to recover. Part of her recovery has been diet, part involves thiamine, but we are still missing some pieces, which is why we are publishing her story.

Early Childhood Symptoms and Triggers

Her early childhood was marked by early bouts of bronchitis necessitating antibiotics. She suffered croup through age 7 years and seasonal allergies through her teens for which she used Claritin regularly. Nighttime enuresis was a problem until we removed gluten from her diet when she was 12 years old. Similarly, her speech was often and seemingly randomly slurred. She received speech therapy through the school to no avail. In 2018, we removed dairy from her diet and the slurring disappeared. It appears that just as a gluten reaction triggered her nighttime enuresis, the ingestion of dairy was some sort of trigger for her slurred speech. I should note, before learning this, we experimented with probiotics, fish oils, digestive and pancreatic enzymes, and a variety of other supplements off and on for years with no noticeable or lasting changes. Her younger years were marked also by body temperature dysregulation, i.e., hot in the winter, cold in the summer. Finally, most things, not all, came easy to her. She had extreme strengths and weaknesses with her strengths often masking her weaknesses. Noticed by many of her extracurricular teachers hard things seemed easy, and easy things hard. Her brain craved complexity.

Vaccinations, Cyclic Fevers, and Green Drinks

In her preteen years, she received numerous vaccinations (required and strongly recommended) prior to our trip to China to adopt her sister. Shortly after, she began to develop worsening mood swings, anxiety, depression, brain fog and has experienced dizzy spells off and on since then.

When her menses began, she bled heavy for three straight weeks. Her doctor put her on birth control pills to stop it; again, a symptomatic treatment. She was borderline to severely anemic and often had PMS and painful periods.

During her teen years, she had repeat and unexplained fevers. She was sick with high fever/flu-like symptoms for three days every four weeks for three years. She’d get sick like clockwork! She would become weak, sleep a LOT, as if she were in a coma. Her doctor was stumped. I had been reading a lot about the use of systemic enzymes used by German doctors. The book by Karen DeFelice mentioned viruses often have a cyclical pattern. So we used high doses of ViraStop2x according to her protocol for a 3-week “holding spell” and it was gone. No more cyclical episodes.

In trying to get healthier, she began “green drinks” (spinach/fruit) 5-6x week. Six months later she was very sick: anemic again, double ear infection, abnormal EEG with heart palpitations, chest pain, and shortness of breath. The cardiologist had put her on a heart monitor for three days, but the results were normal. Perhaps oxalates? I began learning more about oxalates and we began eating less of these foods overall. I’m grasping at straws…

The Red Thread and Thiamine

In 2018, we learned about TTFD/thiamine and began taking Sulbutiamine. My younger daughter, Abby, has improved immensely. In fact, my entire family now uses thiamine and we all feel much better. Before taking thiamine, we all used to be so tired after spending a day at the beach and everyone would need to nap. Now, after supplementing with thiamine for a while, everyone still has high energy levels after these trips. Except for Kayla. Her results with thiamine have been mixed. There seems to be more at play. Perhaps she requires a higher dosage of thiamine or maybe additional nutrients are needed.

Her recent labs for CBC/CMP, thyroid, A1C, vitamin D are all normal. Manganese is low and prostaglandin F2 is elevated. There is some indication of malabsorption based on her bloodwork.  Recently, an Organic Acids Test indicated normal oxalates, low dopamine and serotonin, and extremely high ketones/fatty acids. She has had high folate levels in the past, but at present are normal. Her B12 levels at present are elevated.

In 2019, she began having occasional extremely painful periods where she would be on-the-bathroom floor curled in the fetal position until Ibuprofen kicks in. Her skin is often very pale. Her doctor is not concerned about the increasingly painful menses or the ketones/fatty acid elevations.

My frustration as a parent is that because most of my child’s bloodwork is normal, the doctors write-off her symptoms as stress-related and recommend things like yoga, meditation or saunas or some fluff. Not that these things are bad, but there is something more at work here and no one seems interested in figuring it out. I am bothered that when they do see markers of inflammation or malabsorption they ignore them or really don’t know what to make of it.

Environmental Causes Of Ill-health and Longstanding Thiamine Insufficiency

Over the course of these last years, I have come to realize how important diet and environment are to health. When the pond is poisoned, sadly the tadpoles are hit first, are hit the hardest and display the affects most noticeably. Our youngest child was hit hard. Her circumstances prior to adoption were not conducive to health and she has had many struggles to overcome those early stressors and nutrient deficiencies. Likewise, owing to my ill-health prior to and during my pregnancy and the subsequent western medical treatments, Kayla struggles too. The pond was poisoned for both of them. All lifeforms that drink from a poisoned pond will manifest problems at some point, in some way. Perhaps if we had known about thiamine when they were younger, their problems wouldn’t have manifested the way they did.

Fortunately, Kayla has always eaten healthy, and has been active and athletic throughout her life. As an adult, she experiments with the removal of foods for periods of time to see if things improve, such as grains or cow’s milk and she is cooking creatively. She has been sugar-free for over a year. She takes vitamins and minerals and Sulbutiamine. She recently switched to Lipothiamine and Allithiamine and is now slowly increasing it to see if her dizziness will abate at some point.

I would trade all of her past accolades to have her in better health. We don’t know where her road will lead. Healing is multi-dimensional and someday we hope to look back at today with those oft used words “remember when…”.

Michelangelo was nearing 90 when he said “I am still learning.”  I hope to be too.

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This story was published first on August 31, 2020. 

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Quick Thoughts: Hyperemesis and Early Thiamine Deficiency

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hyperemesis thiamine

A while back, I published an article about expanding the symptoms considered to be associated with thiamine deficiency. Conventionally, we tend to look only at the end stage results of long term thiamine deficiency as being the indicators of disease, forgetting that to get to this stage there was a prodrome, which, except in rare cases, proceeds across many months, if not years. Even with a severely thiamine restricted diet, it can be weeks to months before the more traditionally recognized neurological or cardiovascular symptoms manifest. A series of studies conducted in early 1940s found that among the most common early symptom of thiamine deficiency was GI dysfunction ranging from nausea, vomiting, and constipation, to severe food intolerances and complete anorexia. The prominence of vomiting in this scenario got me thinking about hyperemesis, the severe and near continuous vomiting experienced by some women during pregnancy, but also, about the exploding numbers of illnesses that involve GI dysmotility and dysbiosis. From IBS to SIBO, gastroparesis to constipation and really everything in between, could they also be a consequence of insufficient thiamine? According to the research, yes. Indeed, these non-pregnant cases of GI dysfunction, easily fall under the umbrella of gastrointestinal beriberi – thiamine deficiency that manifests in GI system, sometimes months before the onset of the more traditional cardiovascular or neurological forms.

Pregnancy, Vomiting, and Thiamine

With pregnancy, we know that the energy demands upon the mom are enormous, which means that given its role in energy metabolism, thiamine demands are enormous as well. Some older research estimates the demand for thiamine increases by at least 5X that of a non-pregnant woman. Other research, which I seem to have lost the reference for, posited the demand increased by a factor of 10. Personally, I believe the demand and need for thiamine and other nutrients during pregnancy is higher yet.

The RDA for thiamine during pregnancy is 1.4mg per day, just a fraction over the RDA for non-pregnant women (1.1mg). A quick scan of prenatal vitamins shows that most include from 1.5mg – 3mg of thiamine, woefully below the estimated need of 5-10X non-pregnant levels. That discrepancy alone could cause problems in women who may have been borderline thiamine deficient pre-pregnancy. The pregnancy itself would tip her over into deficiency territory. This then could very easily lead to increased vomiting, which then would further hamper the intake and absorption of thiamine, exacerbating the deficiency, and cause more vomiting; a cycle that becomes especially dangerous to both mom and the baby as time progresses.

While it is easy to see how thiamine deficiency is a common consequence of hyperemesis, it is possible that it is also a contributing cause. Dr. Lonsdale and others have long asserted a role for thiamine deficiency as a causative contributor to hyperemesis. Just based upon the estimated need versus the availability in prenatals and diet, especially once vomiting has begun, this makes sense. Importantly, these types of symptoms have been observed across many case studies unrelated to pregnancy, so much so that gastrointestinal beriberi is a legitimate, though woefully under-recognized form of thiamine deficiency disease. As mentioned previously, the symptoms include GI distress in the form of vomiting, gastroparesis (delayed stomach emptying, which results in vomiting), disturbed GI dysmotility, either too much or too little, and dysbiosis. All of this is documented to be attributable to insufficient thiamine in non-pregnant people. Is it so difficult to see that pregnancy too could elicit or exacerbate gastrointestinal beriberi?

But Wait, What About Carnitine and CoQ10?

If you follow my work, a few years back I mapped one of the causes of hyperemesis to a carnitine deficiency. Carnitine is critical to the metabolism of fatty acids, and its deficiency along with another mitochondrial co-factor, CoQ10, have been linked to a condition called Cyclic Vomiting Syndrome (CVS). Supplementation with l-carnitine and CoQ10 appears to resolve the vomiting with CVS. After publishing that paper, anecdotal reports came back suggesting that l-carnitine and CoQ10 was useful in preventing and resolving hyperemesis. I believe that it is still involved in many cases, but it is possible that thiamine is involved as well and it may be a contributing factor to the carnitine deficiency. Thiamine, in addition to its role in key enzymes involved in carbohydrate and protein metabolism, is also involved in fatty acid metabolism and positionally, it sits a step above carnitine.

Here we have a few options beyond the traditional and largely ineffective anti-emetic medications given to women with hyperemesis; options that I would argue are significantly safer and healthier for mom and baby and likely far more effective. If thiamine and/or l-carnitine deficiency are at the root of hyperemesis, correcting those deficiencies early should give women a much easier and healthier pregnancy.

We Need Your Help

More people than ever are reading Hormones Matter, a testament to the need for independent voices in health and medicine. We are not funded and accept limited advertising. Unlike many health sites, we don’t force you to purchase a subscription. We believe health information should be open to all. If you read Hormones Matter, like it, please help support it. Contribute now.

Yes, I would like to support Hormones Matter. 

This article was published originally on May 24, 2021. 

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