The Red Thread and Thiamine

Even though my two daughters were born worlds apart, a red thread connects us.

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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  1. I strongly suggest oxalate when having gluten and casein intolerance, as the 3 often go together. It is my case and I am also thiamin deficient (from in-utero issues, lab alcohols), and I am a high functionning Asperger’s. Wish you the best!

  2. Hi Joanna, my daughter has EDS, MCAS, POTS, and a number of the neurological complications of EDS, including craniocervical instability and chiari malformation. EDS is hereditary; my daughter inherited it from my wife. My daughter’s symptoms greatly exacerbated in adolescence. Early signs of problems were extremely painful periods. She said it felt like her body was eating itself. Then other symptoms arose including widespread pain, nausea, depression like symptoms, headaches etc. Eventually she was diagnosed with EDS. Key indicators were her extreme hypermobility and pale skin. She tried two different kinds of birth control pills but couldn’t tolerate either one. However, once she started treatment for MCAS her periods have gotten 100 times better. She still gets more hypermobile just before and particularly right after her period, which causes problems, but the period itself is much much better. She uses bioflavanoids, vitamin c, vitamin d, claritin and aspirin as main controls for the MCAS. On the advice of her doctor, the bioflavanoid we use is Neuroprotek. It seems to work well though its expensive. Quercitin is another option and much less expensive. We are also using lactoferrin, a tryptase inhibitor, though this is unusual and I don’t know for sure what role this might play in controlling her MCAS. When she initially started showing signs of MCAS, we also used a low-histamine diet to get things under control. Her diet now is a bit more varied but still limited. She has had surgery for tethered cord and that has likely also helped with some of her symptoms though post-surgery complications are one possible explanation for an (as yet not fully-explained) huge flare up she had last July that caused significant damage from which she is very slowly recovering. She also benefits from low-dose naltrexone (which helps with pain and caused depression like symptoms to vanish) and high-dose thiamine (improved fatigue, posted exertional malaise and brain fog), plus magnesium, alpha GPC and a low-histamine probiotic. Also daily lymphatic drainage massages. She is about 80% recovered from her major setback last year and gaining strength and capability. We still don’t know yet what the ceiling is on her recovery but hoping for the best and to.avoid surgery for CCI and Chiari which have been offered, but which seem to have high rates of complications. This is probably TMI but including it all here in case its helpful for your daughter or others. Hoping for the best for your daughter.

  3. Have you screened this child for autoimmune disease, specifically for celiac or Hashimotos? TTG 2 and TTG 6 antibodies (the latter is associated with neuro issues), and DGP antibodies… there are companies that will do the celiac screening through finger pricks at home. I would look at a complete antibody panel. I’ve seen these symptoms in celiacs.

  4. Oh, wow. I have diagnoses which include EDS, “pots-like dysautonomia,” narcolepsy, cerebellar ataxia, neuropathies. I was a National Merit Finalist, toward the top of my class in high school, earned a full ride to UT Austin, which I lost because I was very depressed and couldn’t wake up for class (I now recognize that everywhere I lived, while in college had significant water damage.), and I was a long distance runner. As a kid I now recognize that I had huge gut yeast problems, and that is why I had insane sugar cravings and became quite overweight. That led next to anorexia and later bulimia. All of which I now know to be symptoms of thiamine deficiency. Toxic mold in our air conditioner in my late 30’s made it all a whole lot worse, and my children started having major symptoms of thiamine deficiency too, but it took a long time to find out that piece. The numbers of aspergillus penicilliodes in our dust were extremely high, and I know that aspergillus metabolites can cleave thiamine. I am not sure, but I assume those may be oxalates. We had oxalate problems with associated pain, mast cell activation symptoms with chemical sensitivity, while in the hidden mold. I’ve had vibratory urticaria my whole life. My daughter had a severe regression following nitrous oxide at the dentist. Both of my kids were later diagnosed with pans/pandas and cirs, but my daughter had practically all of the symptoms of Wernicke-Korsakoff, and I asked our pediatric neurologist about starting her on the dosage of thiamine mononitrate I found in literature, when they couldn’t figure out what was wrong. She said it was fine but couldn’t see how she would have Wernicke-Korsakoff. She improved a fair amount. Sometime around then I did also start giving her magnesium, thank God. My son had problems from the mold too, but they were different. He also had elevated lactic acid and elevated My kids and I have had chromosomal microarrays done by GeneDx, and we have an incomplete microduplication of the SHOX gene with enhancer regions, which is supposedly a one in a million mutation that is described as causing excessive oxidative stress, both ROS and RNS, with an insufficient supply of antioxidants. My daughter had relatively high branched chain amino acids, both kids had low aspartic acid, my daughter had high B12, they had the same secondary marker associated with methylmalonic acidemia on their acytl-carnitine profile. I now know that reactive nitrogen species deplete thiamine, so I think that’s where our basic low thiamine problems begin, then add in elevated yeast, which we’ve all got and environmental issues, and it’s not great. Recently we started getting worse again, especially me as I’ve been having a lot of scary MS type symptoms, but I’m realizing that we’ve been taking a whole lot of sulfate type supplements to help with detoxification without much molybdenum, and I think sulfite might be inactivating our thiamine. TTFD has been a God-send, and I will forever be grateful to Dr. Lonsdale as I believe his work has literally saved us. I’ve bought his book for a number of doctors in hopes of spreading the news about how TTFD is different. One thing, we have found that we also need to take a lot of riboflavin with it. We do have the homozygous C677T mutation and our microduplication does hit the MTHFR gene downstream too. Chris Masterjohn PhD nutritionist says the key to mthfr mutations is actually riboflavin. I’ve read that thiamine requires “ribo-switches” for activation, so perhaps that may be a piece of your puzzle. C677T mutations affect the body’s ability to process both riboflavin and folate, and they’re pretty common, especially amongst caucausions. I also had a messed up gut when I was pregnant as I’d had a severe life threatening infection that required “all the antibiotics in the hospital,” and some IV antibiotics for six weeks just three years before getting pregnant with my first. I also had PCOS, and I was kept on metformin for my whole pregnancy, which I think I’ve read may have affected my kids thiamine processing. My daughter had torticollis show up at 6 months, lip or chin twitching (I think it was lip), and her eyes shook as a baby a few times. We were told none of it mattered much, she supposedly just needed OT for the torticollis. I now know that those can all be due to low thiamine. All supplements that raise nitric oxide seem to help my son, while they make my daughter and I feel terrible. She gets lumbar and neck restrictions along with headaches. I get the headaches. He registers as having low nitric oxide in his saliva and hers is high. Our microduplicated gene is heavily involved in nitrogen metabolism, so I think that’s the issue we can’t completely fix, and we just have to find a good balance. Consider gut yeast and environmental mold as possible contributing factors. Envirobiomics “mold score” test is an excellent option for seeing if your home has hidden mold problems. It won’t tell you where the mold is located, but it will give you the best yes or no available at the lowest cost of testing. Air sampling generally misses the problems that make sensitive people sick as the most toxic molds are heavy spores and often either primarily behind walls or on the floor. Mycotoxins are nanoparticles that pass through walls but don’t get picked up on air testing. I hope you find your answers.

  5. This is a wonderful example of a common health story. First, Joanna was clearly thiamine deficient in pregnancy and past that as a legacy to her child. Unfortunately, she started out in life with a handicap. We note from the story that Kayla was gifted with a high grade of intelligence. The more intelligent you are the greater the risk of poor diet because you have to “make ends meet”. The energy derived from food must be able to meet all the demands of life, particularly under unusual stress. I have published an analogy many times on Hormones Matter. Cells in the body and particularly in the brain have to have all the equipment that creates energy, including the right fuel. One might think of it as “an engine”. But the energy has to be consumed and just like a car, we have to have the equivalent of a transmission. The transmission mechanism is a series of energy consuming chemical events. Folate and B12 are part of that transmission and have to be activated to be functional. The activation comes by the production of ATP from thiamine and when there is insufficient ATP, folate and B12 pile up in the blood because they are inactive and give rise to the equivalent of folate and B12 deficiency. That is why someone like this should receive large doses of thiamine and the total vitamin/mineral complement, preferably intravenously. While reading the many stories that have been published on this website, I have come to the conclusion that all disease represents a gap between energy created and/or energy consumed and it is invariably clear that pharmaceutical drugs make things worse rather than better. It is a tragedy that is affecting millions in America and the more people that read this kind of post, the better they will be able to manage the mysterious and debilitating health patterns that afflict them. I say once again that sugar is the greatest enemy of humankind and our refusal to eat a diet ordained by Mother Nature, coupled with surprisingly common genetically determined risks, is the cause of disease in millions.

  6. I’ve been looking at some of my old notes on sulfation and wonder if that’s not another layer needing addressed in my girls and I. MSM just came today. She had no real lasting changes from Epsom salt baths and does take other sulfation supports (NAC, B12, Sulbutiamine/magnesium). I do agree that order IS important. Perhaps had we started first with B1 the rest would have fallen into place better. Our youngest had horrible painful reactions to various magnesium supplementation until we added Sulbutiamine and then she could tolerate them. Same with probiotics. We too are learning the hard way. Have you had good success with MSM? Reviews seem mostly quite favorable.

  7. Hello,
    I have seen many of Kayla’s symptoms in others. Are you familiar with MSM and it’s relationship to candida that hides from the immune system? I believe you are dealing with layers of problems. We learned the hard way that they must be addressed in the right order otherwise it won’t work.

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