enuresis

The Red Thread and Thiamine

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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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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 first on August 31, 2020. 

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A Light at the End of the Tunnel: Uncovering Thiamine Deficiency

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Early Health Issues: Enuresis, Long Term Antibiotics and Gardasil

My name is Eva, I am 24 years old, I am from Spain and I would like to share my story. Since I was born I have been a very healthy and active girl. The only thing to note is that I have always had frequent urination and nocturnal enuresis until I was 12 years old. At age 13, I began having frequent bouts of tonsillitis and with each episode, I was given a course of antibiotics. Eventually, I was taking antibiotics every three months along with ibuprofen continuously. At 15 years old, they gave me the human papilloma vaccine (HPV) – Gardasil.

After the vaccine, I began having fructose and sorbitol malabsorption problems and because of the frequency of antibiotics, I developed abdominal pains. I had a very pale color on my face and I was a little more tired than usual. I kept getting sore throats and at age16 they removed the nasopharyngeal tonsil /adenoids. In spite of all of this, I was living a normal life and continued to excel in school, receiving honors degree in high school.

At 18 years old, I had another course of antibiotics. This time for three months because the pus plates of my throat did not go away. I was exhausted. In the end, it was determined that I had a staphylococcus aureus resistant infection that was resistant to penicillin. I had an antibiogram, and of all the chances of antibiotics to which I was sensitive, the doctor chose levofloxacin. I was given levofloxacin for treatment of 14 days.

A few days after the treatment, in September 2012, I moved to another city to start my university studies (2 careers at a time). After a month, I got another sore throat that continued for three months. They put me on intravenous antibiotic. The doctor proposed to me to have an operation on my tonsils and I accepted. Just before the operation, I became sick again, and since they could not operate on me with an infection, he prescribed a round of amoxicillin with clavulanic acid plus levofloxacin. It had been five months since I had taken the first course of levofloxacin. This was in February 2013. After the operation, a month later, my knee and jaw began to hurt on the left side of my body. The traumatologist told me he had nothing. The dentist took my wisdom tooth, did a root canal and made dental fillings on that side, but my pain continued. I finished the course and that summer was very stressful for different reasons.

At the end of the summer, I went back to take an antibiotic for a tooth infection. A week before the beginning of the course, in September 2013, I started to feel very tired, and one night, in the middle of the street, I got dizzy and lost my sight and I had to go to the floor for a while before recovering. That’s where the nightmare began. I began to have multiple symptoms: tachycardia, nervousness, dizziness, stomach pains, intolerances, etc. At the end. I had an analysis and they gave me a diagnosis: Hashimoto’s thyroiditis. They started to treat it and at 4 months, when I was “stable” (in lab numbers), my left ankle started to hurt as if they were squeezing me with a chain. It was horrible and it started to go up to the knee, to the hip and shoulder and the pain in my mouth was worse. All on the symptoms were on my left side. The doctor said I had tendinitis, without more importance.

Over the next four months, I began to weaken. I had no strength, my legs were weak, and my mental exhaustion was increasing. I went through all kinds of doctors: rheumatologists, neurologists, internal medicine, traumatologists, and at the end, they concluded that I had fibromyalgia and chronic fatigue syndrome. That’s it. That is the best they could do and they offered no help.

Taking Matters into My Own Hands: The Fluorquinolone Connection

I began to read to realize that they are catch-all diagnoses, where they put people with multiple symptoms. Eventually, I found a doctor who began to treat the intestinal microbiota, to change my diet, reduce stress, etc. This was from 2014 to 2016. While it is true that I learned to manage crises so as not to live with pain 24 hours a day, I was stuck. I was still exhausted and had neuralgia on the left side of my body. So over these last two years I have tried other doctors, I have gone to neurologists specialized in amino acid biochemistry, but nobody knows why my health has declined so much. I have tried acupuncture, antioxidant therapy, etc. At the same time, I have not stopped reading, until I came to this wonderful blog two months ago, and suddenly EUREKA! Everything makes sense. Nobody had told me until now the dangers of fluoroquinolones. It is true that there are people who notice the problems of the antibiotic while taking it and have to leave it, it started a month later, but everything fits. My symptoms include:

  • Chronic fatigue which is very debilitating. I have been at home for 5 years, barely able to go out. I cannot study, work, or anything.
  • I have neuralgia / neuropathy ONLY on the LEFT SIDE of the body (no one gives meaning to this), from the head to the left toe.
  • Muscle weakness and rigidity
  • Tendinitis
  • Intolerance to histamine
  • Polyuria, urinary frequency
  • Sleep problems, sleep is not refreshing. I have epic dreaming disorder that does not let me rest. This problem of dreaming and getting up very tired has been a problem since since I was 16.
  • Problems with noise and light; I have to sleep with plugs and mask.
  • Alterations of the nervous system; I startle easily. I have a lot of intolerance to stress.
  • Problems with basic regulation of the body
  • Dizziness every time I get up when I’m sitting or lying down.
  • Recurrent pharyngitis / sinusitis / chest pain.
  • Hashimoto’s thyroiditis
  • Mental exhaustion
  • Weight loss.
  • Intestinal problems, intolerances, dysbiosis, infection by chronic GERD.
  • Swallowing problems. (The left side of my throat is more inflamed on the inside and it is hard for me to pass the food. It gets stuck).

Surely there are more symptoms, but I forget.

At the Root of My Symptoms: Severe Thiamine Deficiency

After reading the work of Dr. Lonsdale, I measured my transketolase and the result suggests quite a deficiency of thiamine: activation TPPE 25%. So I’ll see if trying this I can improve, until now I was lost and I saw the light at the end of the tunnel.

Questions for Dr. Lonsdale: Hello doctor, first of all thank you immensely for your dedication and work, thank you for your research and your book, you are helping a lot of people. I was lost until I found Hormones Matter and read it.  The activation of TPPE is at 24.98%. As I have read, this suggests quite a deficiency of thiamine. I’m going to look for a doctor who wants to help me treat my deficiency. I’ve read that you have to be careful with paradoxical reactions. But I have several questions that I would like you to answer if it is possible:

  1. The urinary frequency since I was born could have something to do with thiamine deficiency? Would this suggest some kind of genetic problem?
  2. Is supplementation with thiamine forever or only until the transketolase of 0? What is the time of supplementation with thiamine? When would I have to repeat the analysis of transketolase to see how it evolves?
  3. Could it be that levofloxacin has done me irreparable damage and I always had thiamine problems? Or can it be something genetic? – What is the suggested treatment?
  4. I have read about 50mg Allithiamine, with large doses of magnesium and a multivitamin, but how high should Allithiamine go – 200mg, 300mg?
  5. What do I do in the face of a paradoxical reaction? Do I stop the supplementation a few days and continue again, or to endure the reaction and continue? I want to give this information to the doctor who will treat me, in addition to his book.
  6. Does it make sense to have only neuralgia on the left side of the body? It is as if I had two bodies, the joints on the right side do not hurt, nor the nerves, only on the left side. I do not have anyone in the family with a similar background. My maternal grandfather was an alcoholic but he managed to quit. My maternal grandmother, 2 aunts and my mother have hypertension. And on my father’s side, my grandmother has always been tired from a young age, with pains and thyroid problems.

Thank you very much, Eva.

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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