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Parasites Ate My Thiamine!

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parasites thiamine

I’m a 36 year old male and I’ve probably been thiamine deficient my entire life. Everything about my body has always just been a little bit different compared to everybody else. I was always weaker, less coordinated, skinny, sickly, slow, low testosterone, always clammy to the touch, prone to mood swings, occasional hallucinations, and nightmares every single night. This was the only experience I knew and it never occurred to me that any one particular thing could be the underlying cause for this rogue’s gallery of symptoms. I took these challenges in stride, worked hard to overcome them all, and for the most part was a reasonably healthy person. However, nothing could prepare me for the nightmare experience that is dry beriberi deficiency caused by a parasitic babesia infection.

At age 33, my body began to rapidly deteriorate and present a wide variety of confusing symptoms such as intense nerve pain, aching joints, rapid temperature fluctuations, full blown panic attacks that made me want to pass out, confusion, upset stomach, nausea, vertigo, and mild hallucinations again. I went from being relatively healthy to having all of these symptoms in less than 72 hours. This was the start of a 3-year medical odyssey to discover the cause. I got very lucky with tests twice during this journey. At the 2-year mark a neurologist discovered that I was thiamine deficient. Then, at the 3-year mark, my internist discovered that I likely had a parasitic infection of babesia. This is my story.

Early Childhood Illness, Abuse, and Diet

I was born jaundiced and generally very sickly. This shouldn’t have been surprising given that my mother smoked and drank during the pregnancy. The first 3 months of my life were marked with difficulty eating and or keeping food down. In my early childhood, let’s say the ages before 7 years old, I was also prone to frequent ear infections and never grew out of wetting the bed.

My home life was also very abusive. I suffered from lots of neglect, emotional abuse, physical abuse, and thankfully only mild sexual abuse. Given the bad environment, I adopted a number of violent maladaptive behaviors and psychological issues. The night terrors came first. Then I started to hallucinate and see ghosts or demons. It was mostly visual hallucinations but every now and then they would talk or communicate without words. My extremely evangelical caregivers were not impressed by this and finally brought me to a series of psychiatrists.

I was given varying diagnoses which included Oppositional Defiant Disorder, antisocial personality disorder, borderline personality disorder, ADD, and/or schizophrenia. I was forced to take six different SSRI or antipsychotic meds before I was 12 years old. The only one I can actually remember is Tofranil (Imipramine), which I would later learn causes thiamine deficiency.

During this time I also started to experience rather severe migraines and rapidly decreasing visual clarity. My optometrist thought that he had discovered a massive tumor in my head but thankfully it was just a pseudotumor. This is another rare disorder that I did not fit any of the traditional demographics for. I would later learn that this is a symptom both of thiamine deficiency and several tick-borne illnesses. The pseudotumor was treated with bimonthly spinal taps such that I had received at least a dozen before I had turned 12. Some of them had to be anesthetic free for some reason too. After I began to get uncooperative with the spinal taps, the doctors recommended loop diuretics. This is another thing that I would later learn drains thiamine from your body.

The loop diuretics forced and unexpected change upon my system and highlighted a problem that I had never really considered before. Prior to being on diuretics I was drinking somewhere between 6 to 10 sodas per day, usually Pepsi or ginger ale. This was on top of eating a diet of mostly processed foods and desserts at every single meal. All of this was very normal to my parents and grandparents who were Boomers and Greatest Generation respectively. They didn’t grow up on high fructose corn syrup and probably didn’t have the best understanding of the danger that processed foods brought. I don’t know how much of my problem was influenced by soda, but I do know the soda definitely didn’t make things better. Looking back, this kind of diet is absolutely insane. However, it was also very common in my community and so I never thought to question what I was eating.

At age 13, I contracted pneumonia but did not have a caregiver at the time. I just had to deal with it for a couple of months. This would eventually lead to a change of custody and a massive change in medications. My father is a traditionalist and he never believed in any of the SSRIs that my mother had me take. When I moved in, I was cut off from all medication entirely including the diuretics. I stopped wetting the bed after 3 days and have never done so again. I also began to quite rapidly feel better.

Despite all of this, my teen years were comparatively more normal. I played football despite not being particularly athletic and hurt my back in a way that would catch up to me decades later. My mood leveled out and my hallucinations faded. I did have an atypical puberty. For some reason I developed gynecomastia and had no facial hair. I was always skinny and it was much harder for me to build muscle than it was for the other guys. I was also almost always cold even at extremely high temperatures. I found myself getting sick and shaking in 72F. However, weirdly I almost couldn’t feel hot at all. Little did I know then that many of these issues were probably symptoms of low testosterone which was probably caused by the low thiamine.

Insomnia, Nightmares, Zoloft, and Exceedingly Low Testosterone

I suffered from really bad insomnia in college because I was terrified of going to sleep. My nightmares were so bad that I preferred just being awake. They were also very specific and complex.

Much later I would be prescribed Zoloft for depression, which is yet another thing I can drain thiamine from your body. It worked quite well until I missed six doses due to travel. Afterwards, I could never quite get back on the medication right. I wanted to discontinue use of Zoloft but my psychiatrist insisted on doubling or tripling the dose instead. We had a disagreement and because of that I was forced to quit Zoloft cold turkey at age 29. It was a profoundly miserable experience and at the time the worst thing that I had ever felt. It was much worse than child abuse.

It took me about 6 months to stabilize from Zoloft withdrawals and then something else weird happened. I started showing symptoms of bipolar disorder but mostly mania. I was extremely aggressive, energetic, could not sleep at all, and hypersexual. I still had my intelligence about me so I noticed these changes and I knew something was wrong but didn’t know what.

I took the advice of a friend and decided to also get my testosterone levels checked. The testosterone tests revealed a level of 34ng/DL. For reference, this is off the charts low. This isn’t even 10% of what would normally be considered low. I also recognize that my symptoms of extreme energy and hyper-sexuality are kind of the opposite of what you would expect from low testosterone. Thankfully a urologist treated this with Clomid and anastrozole. Symptoms disappeared almost overnight.

The next year my L5 S1 facet joint broke and I suffered a debilitating disc slip for seemingly no reason. My only guess at this point is that perhaps I suffered an injury from football that only manifested itself later as an adult, or perhaps my body was truly failing and I didn’t know it. It took 18 months to reach full recovery, but I did achieve a near miraculous full recovery thanks to disciplined exercise.

The Bottom Falls Out

All of the aforementioned struggles combined pale in comparison to what awaited me in the winter of my 33rd year. My urologist instructed me to discontinue use of both clomiphene and anastrozole without any weaning. I think this stress on my body was the straw that broke the camel’s back.  About three months after discontinuing the use of my medication, my entire body basically went on strike within 72 hours.

It started mildly with just a feeling of being more tired than usual. Then I started having a hard time keeping my food down. Next I noticed that my joints were starting to sprain somewhat easily and I was almost always cold. The symptoms were milder than most seasonal colds and were maybe comparable to just not getting enough sleep. Then suddenly, out of nowhere, on day three I had the most intense panic attack of my life. It was the most intense fear that I have ever felt. I felt that I was imminently about to die and that these were my last moments. The fear was deep and profound as if my body was recognizing some important process just got turned off but I had no idea which one or how to fix it. This attack also immediately coincided with vertigo bad enough to force me to lay down on the floor and wait for it to pass. Thankfully, the entire event lasted less than a minute. Sadly, it would not be the last time this happened.

I would continue to have panic attacks similar in nature to this over the next few months. My mental health almost immediately crumbled despite my best efforts. It felt like the emotions of agitation, irritation, and paranoia where artificially cranked up to their maximum. My mind was moving a million of miles per hour but it was mostly some sort of deep irrational fear. To make matters worse, after the first day I was hit by not fatigue but rather full blown exhaustion that left me nearly unable to move. Then the cold spells hit.

My body started going through hypothermic episodes for no clear reason. I would drop from 97.7F (my normal) down to his low as 94.8F within a matter of minutes. I only know this because my wife is a former nurse who decided to take my temperature after I had complained enough. After seeing sub 95F temperatures her expression went from frustration to deep concern. Hypothermia was a painful experience that would also light up all the nerves in my hands and feet. It often came with mental confusion, agitation and at least a few times hallucinations. Seemingly nothing could warm me up either. No amount of blankets or clothes or heating pads made any difference. The only thing that seemed to work was a really hot bath and that would only work while I was in the hot water. These episodes were scary.

The next day, I started to experience burning feet. Both of my feet suddenly felt weak and as if they were being burned by a cold fire or perhaps an electrical burn. I had no idea of what was going on at the time but this is actually a classic symptom of dry beriberi onset. At this point everything was just way too intense and I felt like I had to seek medical care. This was the start of a very long medical odyssey.

Over the next 6 months I would bounce around between about a dozen different specialists who had various degrees of skepticism about my symptoms. A truly huge number of doctors were instantly dismissive. I got a lot of hand waves of this just being stress, or a mental disorder, or that I just need to take a vacation. The dismissal of symptoms became even more prevalent when every test I was given indicated not only that nothing was wrong but that my blood work was much healthier than normal. Eventually, I saw a pituitary endocrinologist who felt that the symptoms I was experiencing could be related to the testosterone drop. So we did a series of labs while on Clomid and then while off of Clomid to see if anything was being pushed out of balance. There was absolutely no difference between the tests, other than T levels, but I felt much better on Clomid. I felt like I had been cured after resuming Clomid for about 2-3 months. Sadly, this was a false hope. Before we move on to the next section I wanted to mention my back again. During the 6 months of dealing with exhaustion and various body pains every day, I was not able to maintain my disciplined exercise schedule. So while nothing was injured during that time, I now realize almost all of my supporting muscles were probably very weak.

A New Low

My wife convinced me to go on vacation to celebrate my recovery into good health. This might be the last vacation that I ever will ever get to take. About two days into the vacation, my left hand suddenly got De Quervain’s tenosynovitis. My right wrist started suffering from severe tendonitis about 12 hours after that. Then I started feeling a burning nerve pain in both hands. Both of my hands were limp, weak, painful, pale, and in braces within 48 hours. The old familiar feelings of exhaustion, confusion, and difficulty keeping my food down returned the day after that. I foolishly decided to try to finish the last few days of my vacation and get healthcare at home. For some reason, I didn’t connect the issues with my hands to my greater health problems and instead had assumed that perhaps I use them too hard while on vacation. I don’t know, maybe I was getting old and could not go for as long anymore? Maybe I tweaked them by lifting heavy luggage or playing the Switch on the plane? It probably didn’t help that I was getting increasingly delirious too. I made a huge mistake during the next few days of the vacation and hurt my back very badly. This is perhaps the biggest L of my entire life. This back injury never healed properly because I was suffering from thiamine deficiency and a babesia infection at the same time. My body just had no ability to heal, so I was left semi-bedridden.

Upon returning home, I once again immediately sought medical assistance wherever I could get it. Orthopedic clinics were very confused with my hands. They had symptoms similar to carpal tunnel and bad tendonitis, however no MRI or x-ray would ever show even mild versions of such things. My nerve conduction studies were also very normal, which is surprising. Most of the doctors once again recommended mental help but were willing to sign me up for physical therapy to see if that made a difference. I did physical therapy for about a year and never got consistent results. I did sometimes get stronger but that strength was easily lost if not maintained. Any minor injury could set me back for months. I felt like my joints just wouldn’t heal.

Discovering Thiamine Deficiency

I continued to push forward and request more tests from more new specialists to try to figure out what in the world was going wrong with me. I’m going to be honest with you, I was terrified. I had no clue what was going wrong and could tell that none of my doctors did either. After nearly a year of begging doctors for various tests that revealed nothing, I finally gave up and accepted that I was crazy. The first step in this process is to get evaluated by a psychiatrist. I’m thankful every day that I went to see a truly S-tier psychiatrist who sincerely listened to my story. My psychiatrist was not convinced that my problem was a traditional mental disorder. He said that I had some very abnormal labs with my testosterone levels that could not be faked even with the most severe of mental disorders. So he recommended that I see several other specialists including a neurologist before he was willing to move forward with any kind of diagnosis of his own.

The neurologist I saw was equally helpful. He actually believed the symptoms that I described and believed that while I was stressed, I wasn’t mentally ill. The neurologist told me he believes I have a neurological problem but he doesn’t know which one. He put me on an ultra-priority referral to the best neurology clinic in the state and ordered 15 different very rare and unusual labs. He told me that my problem was probably weird and that the specialist he was referring to would probably want at least some of these labs already done. All of the results were perfectly normal except… my thiamine levels were low. This neurologist actually called me about 30 minutes after the lab results came back to tell me to go buy thiamine supplements and take them immediately. I felt a tremendous improvement in all areas within 24 hours of starting supplementation. At the time, I immediately knew that we had found the thing that was causing me all this suffering. Or at least I thought I did. As it would turn out, there was one more surprise in store for my medical journey.

Something Still Wasn’t Right

Now knowing my issue, I immediately researched everything I could about thiamine deficiency and reached out to the handful of experts on planet Earth that exist for this rare disorder. That’s how I got in touch with Dr. Chandler Marrs who not only runs this website but was also able to give me a lot of helpful advice. The next year of my life was basically me thinking I was right around the corner from getting cured now that we discovered I had a thiamine deficiency. There was also some element to trying to figure out why I was thiamine deficient because I didn’t meet any risk factor or demographic for it. During this time I have come to believe that my family possesses genes that aren’t as good at processing thiamine as normal. I think that for almost my entire life I was dipping in and out of mild thiamine deficiency and had no idea it was happening.

I spent a year trying to recover to normalcy but failed spectacularly. I couldn’t seem to quite shake all of the symptoms despite the thiamine supplementation. I was probably just too happy that the constant 24/7 burning hands finally ended. I spent pretty much all of the previous year feeling like my hands were burning and almost no medications would make it stop. It was really difficult to sleep or focus when you feel like you’re on fire. Being relieved from this probably skewed my perspective away from having any more objective take on my situation. While my symptoms were lesser, they were still inconsistently present.

New symptoms began to appear too. I noticed that all of my joints were even weaker. It felt like my connective tissue was falling apart and my muscles were all so atrophied. I had assumed this was from the inactivity due to exhaustion in the previous year or just some lingering nerve damage. However, another year of healthy living, proper supplementation, and all sorts of physical therapy made no difference to my situation. In several ways my joints actually got worse and weaker. It became incredibly easy for me to sprain ankles, strained my hands, get tendonitis in my wrist, or even experience a lot of pain in my knees and hips. This pain continued to spread until it was affecting basically every single joint in my entire body. At this point I returned to seeking medical care and was pretty uniformly told that I should be instead seeking mental health care.

Stubbornly, I decided to work only with the handful of doctors that believed I did not have a mental disorder. I also begged them to give me a wide variety of unusual tests for rare disorders. I knew that whatever this problem was, it had to be unusual. One of these random tests actually popped positive for something interesting. I was positive for a babesia and bartonella infection but did not have Lyme or any other tick-borne illnesses.

Parasites

Babesia aren’t even bacteria. What I had was technically a protozoan infection. These ultra-tiny parasites live inside your red blood cells. They have also been known to take up residence and intracellular spaces, joints, and sometimes nerve tissue. It was extremely difficult to find even a single infectious disease doctor was willing to take me as a patient. Most of them did not feel qualified to treat this particular type of infectious disease. I did find one however and she did believe that my symptoms were within the ballpark of a babesia infection. She believed the bartonella may have been a false positive. Unfortunately we were not able to confirm this diagnosis with repeated testing with local labs, though it should be noted that both babesia and bartonella are extremely difficult to test for. We decided to move ahead with treatment for babesia given that the treatment was just a round of antibiotics that had relatively low risk. There was definitely some risk given that I was already thiamine deficient. Many of you reading this website or article are probably already thiamine deficient so in case you didn’t know, antibiotics tend to really disrupt thiamine absorption and make beriberi worse. However, I decided I certainly wasn’t going to be getting any better as long as these parasites were in me. So I worked with several doctors including Dr. Marrs, to come up with a plan to protect my gut biome as much as possible during this process.

The babesia treatments were almost immediately successful. Within 48 Hours of starting antibiotics, I already felt much better. About 3 days after taking antibiotics, I stopped having nightmares entirely. I used to have nightmares every single night and suddenly they just stopped. After completing the entire course of antibiotics, I overall felt much healthier. My body was still weak, my muscles still atrophied, and my joints still in pain, however they suddenly felt as if they were improving and also recovery times were much faster. The biggest improvement is that my recovery times are now probably about two or three times what a normal person’s would be for the same activities. Even that is probably still 10 or 20 times better than where I was before. My tolerance to cold got better and the last of my lingering minor mood swings disappeared. I started feeling good enough to resume physical therapy and this time I think it’s actually working. The strength in both my hands, my knees, and my back are slowly improving this time. I fear that a 100% recovery is probably impossible from this much damage. However, I would be happy to hit about 80% again.

Parasites Probably Ate My Thiamine

So how did this happen? That’s a question I ask myself almost every single day now. Babesia is about as well researched as thiamine deficiency which means that there’s very little research about either of them. They barely even have standard treatment protocols. However, in my deep readings I did discover that a babesia infection can cause low testosterone and thiamine deficiency. My peasant non-doctor understanding is that babesia and other tick-borne illnesses will actually sap thiamine directly out of your bloodstream. They can also cause SIBO, which is known to lower thiamine absorption in the stomach as well. This is of course on top of damaging joints and causing a great deal of mental stress, which increases my thiamine need. All of these are ultimately systemic problems that can disrupt not just thiamine absorption. I now know that my family absorbs thiamine worse than other people. So my assumption is that I have probably been somewhat deficient my entire life and this babesia infection was the perfect straw to break the camel’s back and send me into full blown thiamine deficiency. It’s also entirely possible that given my incredibly low income and frequently outdoors upbringing, that I had contracted babesia as a child and had carried that infection with me my entire life. Maybe even my body got used to it? It’s also theoretically possible that it could have been congenital. I really don’t know how I contracted a super rare tick-borne illness but I do know that it was the perfect thing to sap the tiny bit of remaining thiamine of my body.

Between the two, I think the thiamine deficiency caused much more severe problems for me than the babesia infection. Moving forward, I’m just going to keep supplementing, testing to make sure the infection doesn’t return, sticking with physical therapy, and hope that it all works out in the long run. I’m 36 years old now which isn’t young but in the medical field I’m told it’s young enough to have a much better chance of recovery than most patients. It is frustrating to know that this kind of recovery will take years instead of months. Thankfully, I still have plenty of discipline to keep pushing through.

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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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ASD, Seizures, and Eosinophilic Esophagitis: Could They Be Thiamine Related?

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seizures, EOE, Autism, thiamine

My 18 year old son has ASD and has had a seizure disorder since he was 6 years old. He has tried virtually all anti-epileptic drugs. Either the side effects were unbearable, they made his seizures worse, or had no effect on his seizures. He was diagnosed with Eosinophilic Esophagitis. He is underweight and of short stature, and always has been. Mitochondrial tests show that complex II is working at 26% capacity. He is also autistic. He has tested positive for folate receptor antibody.

Over the years he has done several rounds of antibiotics, including Flagyl, which I have since learned that it significantly depletes the body of thiamine. He has also taken several rounds of Diflucan, Azithromycin, Vancomycin, Augmentin, Amox for various issues including candida, clostridia, gram negative gut bacteria, etc.

He is currently on Lamictal and just started Briviact for seizures. The Briviact causes anger and aggression issues. He currently deals with OCD tendencies. He was recently found to have bone density of 2.8 standard deviations below normal. This falls in the range of osteoporosis, but he has not been diagnosed with it because of his age.

He eats fresh and a lot of dried fruit, meats, raw and cooked greens, white rice, lots of cooked veggies, eggs. He also takes Lipothiamine 100 mg/day, Magnesium 550 mg, a multi-vitamin, calcium, vitamin D, and K, all at the direction of his doctors.

Childbirth and Infancy

M was born on July 9th 2005 7lbs 9oz. He was full-term. I had high blood pressure at 41 weeks and labor was induced. He would not drop into position and he became distressed and so was delivered via cesarean while I was under general anesthesia.

He spent 4 days in the NICU because he aspirated meconium and would not latch to feed. While in the NICU, he was administered antibiotics. He was formula-fed, not breast-fed.

As an infant, the large size of his head was somewhat of a concern for the pediatrician. He was administered vaccinations according to the CDC guidelines for the first 12 months. He had infantile spasms off and on. He spiked a fever for every vaccination. Tylenol was administered. He received 3 doses of flu vaccine, accidentally, within 3 months.

He did not sleep well, and still doesn’t.

Initially, he was very precocious. As an infant, he would put puzzles together that were for much older children. He would complete sorting activities that were well beyond his age range. He did not babble and eye-contact was fleeting.

After his 18 month vaccination, he lost just about everything within 2 weeks. After these vaccinations, he couldn’t do his puzzles, bring food to his mouth, smile, couldn’t stand to be read to when he previously loved to be read to. He also developed a sensitivity to light and sound and cried a lot.

At 24 months, he was diagnosed with profound autism.

PANDAS/PANS and Eosinophilic Esophagitis

At age 10 years, he abruptly lost skills again and it was thought he had PANDAS/PANS as he had several strep infections treated with antibiotics. He did a several month long courses of Augmentin or Azithromycin to treat PANDAS/PANS. He had a severe trauma at age 11. He was horrifically abused by a school employee.

He has always been of short-stature nearing 5th percentile for height, and slightly overweight for his age, until age 14 when he started having symptoms of Eosinophilic Esophagitis. He was diagnosed with EoE at 15 and has struggled to keep his weight high enough as he dealt with the intense pain, fatigue, and esophagus issues with this condition. He is currently taking Dupixent for his Eosinophilic Esophagitis as the PPI and Budesonide slurry were not addressing the issues. So far Dupixent is allowing him to eat. His diet remains very restricted due to having so many trigger foods and he has almost no appetite.

He eats a lot of dried and fresh fruit. He loves greens, raw and cooked. He also eats meat, white rice noodles.  He eats mostly an organic diet. He does occasionally enjoy candy.

Seizures

He developed seizures at age 6. These were controlled for a while on Depakote, but the side effects of Depakote were too much for him and so we had to stop. His seizures are now not controlled. He has 1-2 tonic-clonic seizures per week, plus several staring spells all throughout the day. Recent EEG showed abnormal spikes and discharges in the frontal and temporal lobes. It indicated his seizures involved many places on his brain. Brain surgery was being considered for seizures at this time, but ruled out as an option due to the nature of his seizures.

He has failed several other seizure meds including Vimpat, Zonegran, Aptiom, Topamax, Onfi, and others. He is currently on Lamotrigine and Epidiolex for his seizures. He also takes trazadone and gabapentin for sleep, although these do not consistently help him sleep. He is so consumed by fatigue and can hardly get out of bed even to walk across the room. With tons of encouragement he can do brief periods of school work. The meds cause him to lose focus and become frustrated. He seems to almost always be lost in a fog and unable to participate in basic conversations without losing focus or becoming too exhausted to continue. Each seizure will cause him to be in bed for 2-3 days. He has fallen many times going into a seizure and is now afraid to leave the safety of his bedroom. He will come out, but rarely.

He has intermittent issues with nystagmus. He had a bad case of COVID 2 years ago, which caused clusters of seizures and constant nystagmus.

He has an exaggerated startle response.

Despite It All

M is a sweet young man. He is brilliant. He loves animals. He tells everyone he sees that he is so happy to see them. He is working with a local legislator on how to improve rights for non-speaking people, especially in the court room. He is completing all of his high school courses at home with straight A’s and he is a published poet.

He does not speak, but he communicates by pointing to letters on an alphabet board. This is a skill that took him years to learn. He communicates at an age-appropriate level or higher. He is working, slowly, toward a standard high school diploma.

Postscript

Based upon what I have learned from this website, I discussed thiamine with our physician. It turns out, she heard Dr. Lonsdale speak years ago. She recommended 50mg of Lipothiamine. The entire time he was taking it, he had no seizures. I was not sure that it was thiamine or the meds until we ran out for about a week. The seizures returned, but as soon as we resumed the Lipothiamine, they disappeared again. He has been taking it again and now it has been 2 weeks without seizures. I don’t want to get my hopes up, but it could definitely be a piece of the puzzle. Are there others out there with similar experiences?

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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Notes On Thiamine Status During Pregnancy

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Thiamine pregnancy

Currently, I am researching thiamine status during pregnancy for a series of articles to be published by the newly formed Thiamine Advocacy Foundation. Over the next few months, I will be publishing snippets of that research, and of course, when the project is finished, I will let everyone know and provide links to the articles. Today, I want to discuss a study published in 1980 about thiamine deficiency in pregnant and non-pregnant women.

For this study, the thiamine status of 60, presumably healthy, pregnant women was assessed across multiple times points (second trimester, third trimester, and in the immediate postpartum. Not all women completed all assessments. Food diaries were collected for three days preceding each test time to identify thiamine intake and a lifestyle survey to assess contraceptive use, smoking and alcohol history was given. Samples and diaries from 20 non-pregnant women were collected as well.

To determine thiamine status the erythrocyte transketolase test with thiamine pyrophosphate activation was used. This is among the reasons I found this study useful. It is only one of only a few studies of this population using the transketolase test. Recall from Dr. Lonsdale’s discussion Understanding the Labs (and here), the transketolase test is arguably a more accurate measure of thiamine status than plasma, serum, and some measures using whole blood.

Using the transketolase test, researchers found that 30% of the non-pregnant women were deficient in thiamine as were 28-39% of the pregnant/postpartum women depending upon the phase of pregnancy. Importantly, not all women were deficient at all test times. This means that the deficiencies likely waxed and waned relative to other variables like intake and stressors. Intake was considered sufficient in all but 10 of the women and for those 10 women it was only minimally below the RDA. Additionally, the researchers reported that previous oral contraceptive use had no apparent effect on thiamine status during pregnancy but that there was a trend for an increased risk of deficiency with previous pregnancies.

While this was a small study, the percentage of women who are deficient in thiamine is striking, especially the non-pregnant controls. If thiamine is deficient before pregnancy, the risk of severe health issues across pregnancy increases. Here though, none of the women who were deficient in thiamine displayed the classical symptoms of thiamine deficiency, although details were lacking. Moreover, all of the women delivered presumably healthy children, or at least healthy weight children, as other parameters were not measured. Again, this finding is important because it suggests that either 1) what we expect to see with deficiency during pregnancy is not completely accurate, 2) that the persistence or chronicity of the deficiency matters, and/or 3) that it is not simply a deficiency in thiamine that causes some of the more severe complications of thiamine deficiency during pregnancy.

I have written previously about the mismatch between classically defined symptoms of thiamine deficiency and what we are more likely to see with modern diets and stressors. I suspect this applies to pregnancy as well. I have also written about how thiamine status is likely to change relative to intake and demand. Rodent studies have shown that the typical neurological symptoms of deficiency do not appear until there is 80% decline of thiamine stores. Since we store a little over two weeks of thiamine, one would have to completely eliminate intake for more than a week before those symptoms might emerge, and even then, it might be a while before they were recognized. This is certainly a factor with hyperemesis gravidarum, the severe vomiting that some women experience during pregnancy but perhaps not in non-HG related pregnancies.

It is important to note, however, HG and thiamine deficiency go hand in hand. Thiamine deficiency, along with other deficiencies, may trigger HG (think gastrointestinal beriberi) in the first place, and once the vomiting begins, will easily deplete thiamine stores. None of the women in the current study developed HG, however, or other complications, so that leads me to believe, that we need additional triggers and we need persistent or chronic thiamine deficiency before noticeable complications arise.

In this study, all we have are indications of deficiency at specific points in time. We have no evidence of how long those deficiencies were present or whether other variables were somehow buffering maternal and fetal health such that the typical complications associated with thiamine deficiency were not observed. Even so, a finding that upwards of 30% of a test population of women, both non-pregnant and pregnant thiamine deficient speaks to how common this deficiency may be and how close to the precipice of more severe health issues a percentage of the population resides. Although observable changes in health were not reported or perhaps even recognized in this report, knowing what we know about thiamine’s role in energy metabolism, it is not unlikely that there were many negative metabolic patterns brewing just below the surface.

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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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Juvenile Rheumatoid Arthritis: An Unusual Treatment

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juvenile arthritis thiamine

Case example 6.13 on page 248 of our book, Thiamine Deficiency Disease, Dysautonomia and High Calorie Malnutrition, is the story of a child with the conventional diagnosis of juvenile rheumatoid arthritis. The case is so important that I want to discuss it in detail, pointing out the reasons and the rationale for the treatment that was used.

Juvenile Rheumatoid Arthritis: A Case Study

An-eight-year-old Caucasian girl was first examined for juvenile rheumatoid arthritis, a diagnosis made elsewhere. She had been born prematurely with a birth weight of 1.6 kg. Early development was normal and she was receiving high scholastic grades. Six months previously her right knee became swollen and stiff. Fluid was aspirated and she received an intraarticular injection of corticosteroid. The laboratory tests showed no systemic effect and culture of the synovial fluid was sterile. Three months later the same knee became swollen and the joint was reported to be warm to the touch and tender. Laboratory tests were again reportedly negative. Appropriate doses of acetylsalicylic acid (aspirin) were started, which she was unable to tolerate because of nausea.

The first clue here is the premature birth. It had long been known that there was a legacy for premature birth and this has been confirmed recently  The second clue was that the laboratory studies were reportedly normal repeatedly, giving rise to speculation that this was an unusual example of  juvenile rheumatoid arthritis. The third clue, unlikely as it may sound, was the report of high scholastic grades. A well-endowed brain requires more energy than a less well-endowed brain. The nausea is a symptom produced by the brain, meaning that the aspirin had sent a signal into it, implying undue sensitivity of the cells receiving the signal. That kind of hypersensitivity reflects mild brain oxygen deprivation (hypoxia) or pseudohypoxia (inefficient oxidation)

Other symptoms were constantly cold hands, recurrent abdominal pain with nausea, easy fatigue, and pallor. Stiffness in the joint was more marked in the morning. Sleep requirement was noticeably increased compared with her two siblings and she was described as persistently irritable and bad tempered. On examination she was normal for height and weight and looked pale. Filiform papillae on the tongue were prominent. The heart rate was 140 bpm and the blood pressure 120/66 mm Hg. Both legs were mildly cyanotic (dusky blue) and the feet cold to the touch. Dermographic stimulation (with a fingertip) produced obvious blanching, which was more marked on the right leg. The right knee was swollen with some patellar tap (indicating fluid in the knee joint) and the circumference of the left thigh was measurably greater than that of the right. A qualified dietitian reported that her nutrient intake was adequate and she was counseled. Two weeks later she developed some swelling in the left knee. Examination revealed facial flush with circumoral pallor, overactive heart, audible femoral pulse by auscultation, unpredictable deep patellar knee reflexes varying from nonreactive to double in nature and mild cyanosis of the feet and hands together with well-marked hippus of the pupils (light stimulation produced alternate dilatation and constriction). Laboratory studies revealed an abnormal TPPE in red cell TKA, elevation of serum B12 and moderately increased ratio of creatine to creatinine in urine. There are a lot of clinical clues here, many of which I had discovered from experience over many years.

      • Increased sleep requirement. I had noticed that this was a reliable clinical test of energy deficiency. This has recently been confirmed .
      • Cold hands, recurrent abdominal pain with nausea, easy fatigue, fast heart rate, cyanotic legs and cold Without going into details, these symptoms are all due to oxidative dysfunction in brain cells.
      • Prominent filiform papillae on the tongue. These are part of the tongue surface structure. Although I do not know the mechanism, I have repeatedly observed this in children whose symptoms were resolved by the use of megadose thiamine. They look like little red spots because I assume that they are probably inflamed. The red spots disappear after the patient is reconstituted.
      • Demographic stimulation with a fingertip. Both children and adults can show this phenomenon. In the wake of the stroking action of the fingertip, a blanching occurs, producing a white figure on the skin. I have assumed that this is a local reflex affecting skin capillaries due to changes in autonomic nervous system controls. It does not appear in biochemically healthy people.
      • Flushed cheeks with circumoral pallor. This is something I have observed repeatedly in children affected by oxidative inefficiency of brain. This is reported in the medical literature as a typical appearance of streptococcal infection. My observations belie this and I think that it is simply a marker of stress and not unique to infection.
      • Audible femoral pulse. By placing a stethoscope over the inguinal ligament, the pulse was clearly audible. It is a characteristic described in the symptoms and signs of beriberi. In an adult case of beriberi the pulse can be audible without the use of a stethoscope.
      • Laboratory studies described. These are all typical of poor energy metabolism from thiamine deficiency.

Thiamine Treatment and Progression of Recovery

After informed consent of both the child and her parents, thiamine in the form of thiamine tetrahydrofurfuryl disulfide (TTFD), 150 mg per day, and a comprehensive high-potency multivitamin were started. TTFD is a synthetic derivative of allithiamine, a form of naturally occurring thiamine discovered in garlic. Its biologic action is that of thiamine but it has been found to have a greater biologic potency in animal studies and eventually in humans. Its action is that of megadose dietary thiamine  by stimulation of energy production.

Two Months

Two months later it was reported that there was no change in her knees but that her disposition was improved. Body weight had increased by 1kg. Recurrent cyanosis and coldness of the feet were still present. The right knee was swollen and there was about 5° of flexion deformity. No patellar tap could be elicited.

Three Months

Three months later she reported the disappearance of pain and stiffness and her activity included running and riding a bicycle.

Seven Months

After seven months she reported full physical activity without pain or stiffness and great improvement in personality. She looked well. There was mild livid mottling of the skin in the legs. Blood pressure was 100/60 mm hg and heart rate was normal. Thigh circumference was still greater on the left, but no deformity or swelling was detectable in either knee. Red cell TKA had increased and the TPPE had fallen to 1.8%. The dose of TTFD was decreased to 100 mg per day. In addition to the physical improvements, there was noted improvement in personality and behavior. I would like to suggest that irritability and bad temper is usually considered to be the personality of a child in pain and it might be, however, my experience with bad temper in children without arthritis is that the personality changes dramatically when they receive megadose thiamine. The expression of  normal personality is a function of a healthy brain, dependent on cellular energy.

A Relapse

In the next few months it was revealed that there had been some stresses within the family, although their nature was not discussed, and eight months after decreasing the dose of TTFD there was found to be some synovial effusion and swelling in the left knee. Urinary ratio of creatine to creatinine had again increased. The dose of TTFD was increased to 200 mg/day. Four months later TTFD was replaced by thiamine hydrochloride, 300 mg per day. General health was good and she was asymptomatic. Urinary creatine/creatinine ratio had decreased. At the age of 12 years when last examined, she was completely well and free from symptoms. It should be noted that the re-emergence of her symptoms was in direct relationship to the additional energy requirement brought on by the family stress. Stress is defined as any form of environmental attack requiring an energy dependent adaptive response, whether this is a prolonged mental struggle, trauma or infection. The reappearance of joint pathology suggests that the family stress had siphoned off adaptive energy for brain use: hence the decision to increase the dose of TTFD. Additionally, a higher than normal urinary ratio of creatine/creatinine is evidence of an energy deficit. When the high ratio decreased in this patient, it indicated an improvement in energy metabolism

Points of Consideration

A study of 225 juvenile idiopathic arthritis cases (JIA) and 138 playmate-matched controls has been reported. Compared to the controls, preterm delivery was associated with JIA (3). Premature infants constitute a risk group for thiamine deficiency. Thiamine diphosphate (TDP) was determined in whole blood in the first days of life and approximately every two weeks in 111 premature infants. TDP concentrations showed an age-dependent decline. Obviously, this raises the question of the long-term legacy because this patient was eight years of age. Without going into the details of the laboratory study, the effect of adding thiamine pyrophosphate in showing an acceleration in red cell transketolase activity proved that there was indeed thiamine deficiency. Glucose metabolism not only provides energy for physical activity that also mediates a variety of physiological processes through the formation of complex signaling networks. Recent studies have indicated that glucose metabolism plays an important role in the pathogenesis of rheumatoid arthritis. Since thiamine plays a vital part in glucose metabolism, it is not too big a jump to see why megadoses of thiamine had this remarkable effect. There is much evidence that energy metabolism plays an enormously important part in the etiology of many if not all diseases. Perhaps the use of TTFD should be explored in the treatment of other inflammatory diseases. The length of treatment, measured in many months, is a very strong indication that this was far from being a simple dietary phenomenon. There may have been a fundamental genetic abnormality, but it raises the question whether thiamine deficiency during pregnancy can give rise to a prolonged legacy that interferes eventually with the growth of the child.

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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 article was published originally on September 12, 2019. 

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Energy Medicine

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Energy medicine

I have written many posts on Hormones Matter and have tried to answer the questions arising from each post. These questions and my answers have been so repetitive that I decided to try to make it clear what “energy medicine” is all about and why it differs from conventional medicine. It is only natural that the posted questions are all built on our present ideas about health and disease. What I am about to say is that the present medical model has outgrown its use. Therefore it is obvious that I must discuss what this means. First of all, why do we need a “medical model”? In fact, what is the difference between complete health and its lack? The Oxford English dictionary gives the definition of disease as “a serious derangement of health, disordered state of an organism or organ”

The American Model of Medicine

As I have said before, the present American medical model was aimed at making a diagnosis of one of many thousand described diseases. It was devised from the Flexner report of 1910 that was initiated by Rockefeller. Rockefeller wanted to make medical education adhere to a common standard, thus creating the present “medical model”. The Flexner report used the methodology of diagnosis that was current in Germany. This stated that the patient’s report to a physician is called “history”, involving the patient’s description of symptoms and their onset. From this, the physician may or may not have an idea what is wrong. The next part is the physical exam where a hands-on search of the patient’s body is made for evidence of disease. This is extremely complex when put fully into clinical operation and also may or may not provide clues to a diagnosis. The third operation is laboratory testing and it is this constellation of abnormal tests that provide scientific evidence for the nature of the disease. Each test has been researched and aside from one that is either positive or negative, others have a normal range reported in numerical terms. Perhaps, as an example, the test for cholesterol level is the best known. Each test has to be interpreted as to how it contributes to arriving at a diagnosis. Finally, the physician has to try to decide whether medical or surgical treatment must be offered. Please note that the surgical removal of a sick organ may be the signature of medical failure, for example, removing part of the intestine in Crohn’s disease, for it represents a missed opportunity to treat earlier in the disease process.

Laboratory Tests and A Drug For Every Disease

It is the constellation of symptoms described by the patient and the abnormalities found by the physical examination that constitute a potential diagnosis to formulate what laboratory tests should be initiated. It is the constellation of laboratory tests that may or may not provide the proof. There are problems with this. For instance, there may be test items in the constellation that create confusion, such as “it might be disease A or disease B. We are not sure”. Tests that are “borderline” positive are particularly confusing. The diagnosis finally depends often on who was the first observer of these constellations. For example a person by the name of Parkinson and another person by the name of Alzheimer, each described clinically observed constellations that gave rise to Parkinson’s disease and Alzheimer’s disease. Since they were first described, the pathological effects of each disease have been researched in painstaking detail, without coming to the conclusion of the ultimate cause. Finally, the pharmaceutical industry has indulged in complex research to find the drug that will reverse the pathological findings and produce a cure. Because this concept rides right through the objective, each disease is thought to have a separate underlying cause and a separate underlying cure in the shape of a new “miracle drug”. Witness the recent revival of a drug that was initially found to be useless in the treatment of Alzheimer’s disease. This revival depends on the finding of other pathological effects discovered in the disease, suggesting new clinical trials. When you take all these facts into consideration, it is a surprisingly hit and miss structure. For example, we now have good reason to state that a low cholesterol in the blood is more dangerous than a high one. Why? Because cholesterol is made in the body and is the foundation material for building the vitally important stress hormones. Cholesterol synthesis requires energy and is a reflection on energy metabolism when it is in short supply.

The Physicians Desk Reference, available in many public libraries, contains details concerning available drugs. Each drug is named and what it is used for, but often there is a note saying that its action is poorly understood. Just as often, there may be one or two pages describing side effects. In fact, the only drugs whose action is identified with cause are the antibiotics. The rest of them treat symptoms but do not address cause. Antibiotics affect pathogenic bacteria but we all know that the bacteria are able to become resistant and this is creating a problem for the near future. It is interesting that Louis Pasteur spent his career researching pathogenic microorganisms. However, on his deathbed it is purported that he stated “I was wrong, it is the defenses of the body that count”.

It must be stated that the first paradigm in medicine was the discovery of pathogenic microorganisms and their ability to cause infections. Many years were spent in trying to find ways and means of killing these organisms without killing the patient. It was the dramatic discovery of penicillin that led to the antibiotic era. I like to think that Louis Pasteur may have suggested the next paradigm, “assist the body defenses”.

Energy Medicine: A New Paradigm for Understanding Health and Disease

When a person is seen performing on a trampoline, an observer might say “hasn’t he got a lot of energy!” without thinking that this represents energy consumption. Energy has to be captured in the body and is consumed in the physical action on the trampoline. Many people will drink a cup of coffee on the way to work believing that it “creates” energy. The chemical function of caffeine stimulates action that consumes energy, giving rise to a false impression. Every physical movement, every passing thought, however fleeting in time, requires energy consumption. The person who has to drink coffee to “get to work”, is already energy insufficient. He/she can ill afford this artificial consumption of the available energy.

I am going to suggest that the evidence shows “energy medicine” may indeed be the new paradigm, so we have to make sure that anyone reading this is conversant with the concept of energy. In physics, “energy is the quantitative property that must be transferred to an object in order to perform work on, or heat, the object. Energy is a conserved quantity, meaning that the available energy at the beginning of time is the same quantity today. The law of conservation of energy states that “energy can be converted in form but not created or destroyed”. Furthermore, Einstein showed us that matter and energy are interconvertible. That is why the word “energy” is such a mystery to many people. What kind of energy does the human body require?

We are all aware that the electroencephalogram and the electrocardiogram are tools used by physicians to detect disease in the brain and the heart. If that means that our organs function electrically, then where does that energy come from? We do not carry a battery. We are not plugged into a wall socket and the functional capacity of the human body is endlessly available throughout life. The only components that keep us alive are food and water. Everyone knows that foods need to contain a calorie-delivering and a non-caloric mixture of vitamins and essential minerals. The life sustaining actions of these non-caloric nutrients is because they govern the process of energy capture by enabling oxygen consumption (oxidation). They also govern the use of the energy to provide physical and mental function.

The calorie bearing food, consisting of protein, fat and carbohydrate is used to build body cell structure. This is called anabolic metabolism. If body structure is broken down and destroyed, weight is lost and the patient is sick. This is called catabolic metabolism. In healthy conditions, food is metabolized to form glucose, the primary fuel.

Thiamine (vitamin B1), together with the rest of the B complex, governs oxidation, the products of which go into a cellular “engine” called the citric acid cycle. This energy is used to form adenosine triphosphate (ATP) that might be referred to as a form of “energy currency”. Without thiamine and its vitamin colleagues in the diet, ATP cannot be formed. Research for the next stage of energy production has yielded insufficient information as yet concerning production of electrical energy as the final step. The evidence shows that thiamine may have an integral part in this electrification process, although much mystery remains. Suffice it to say that we are electrochemical “machines” and every physical and mental action requires energy consumption.

Maybe the Chinese Were Right

In the ancient Chinese culture, an energy form called Chi was regarded as the energy of life itself. Whether this really exists or not and whether it is in some way connected to the auras purported to surround each person’s body is still conjectural. It would not be too absurd to suggest that it might be as yet an undiscovered form of energy and that it is truly a reflection of good health. My personal conclusion is that some form of electromagnetic energy is the energy that drives our physical and mental functions and that it is transduced in the body from ATP, the storage form of chemical energy. There is no doubt that acupuncture does work and certainly encourages the conclusion that the meridians described by the ancient Chinese thinkers are an important evidence of electrical circulation. There is burgeoning evidence that energy is the core issue in driving the complex process of the body’s ability to heal itself. The idea that the physician or anyone else that purports to be a “healer” is a myth, because we have the magic of nutrients that are capable of stimulating energy production as already described. The “bedside manner” is valuable because a sense of confidence and trust results in energy conservation. Remember the proverb “worry killed the cat”.

Illness and the Lack of Energy

As essentially fragile organisms, we live in a situation of personal stress. We are surrounded by micro-organisms ready to attack us. We have built a culture that is enormously stressful in many different ways, I turn once again to the writings of Hans Selye, who advanced the idea that we are suffering from “the diseases of adaptation”. He recognized that some form of energy was absolutely essential to meet any form of physical or mental stress. One of his students was able to produce the general adaptation syndrome in an animal by making the animal thiamine deficient. Energy metabolism in Selye’s time was poorly understood. Today the role of thiamine is well known. As I have described in other posts and in our book, the lower part of the brain that controls adaptive mechanisms throughout the body is highly sensitive to thiamine deficiency. Alcohol, and sugar in all its forms, both overload the process of oxidation. Although energy metabolism depends on many nutrients, thiamine is vital to the function of mitochondria and its deficiency appears to be critical. Because the brain and heart are the dominant energy consumers it is no surprise to find that beriberi has its major effects in those two organs. Symptoms are just expressions of oxidative inefficiency of varying severity. This is the reason why 696 medical publications have reported varying degrees of success in the treatment of 240 diseases with thiamine. Its ubiquitous use as a drug depends on its overall ability to restore an adequate energy supply by stimulating mitochondrial function. It is also why I propose that energy deficiency is the true root of modern disease.

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 Gerd Altmann from Pixabay.

This article was published originally on November 19, 2019.

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Healing Our Daughter, Healing Ourselves

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Healing our daughter with thiamine and vitamin K2

Our Little Tadpole

Abby is our little tadpole. Sensitive to seemingly everything, she morphed into something she should never have been. Many people openly stare quietly, thankful their kids aren’t like her and go about their business without much thought. Or worse were those who only stood by saying “God, somebody DO something!” when our daughter was screaming in pain in public as if WE weren’t there. There is much to be learned from them, if we only had eyes to see. We’ve made mistakes in our journey with our daughter, but the 10 specialists we’ve taken her to in the last nine years have provided numerous test results with little to no answers. The last allergist I took her and told me to “stay off the internet” as he was handing me free pharmaceutical samples as I was walking out the door. They made it as far as the trash can in the restroom. And so began our journey of doing something different, looking for answers outside of what we’ve been told. In our journey to heal our youngest daughter, we are healing ourselves too as we all seem to be dealing with very similar issues of low stomach acid, connective tissue dysfunction, and nutritional deficiencies/dependencies. I will start with her story first, since it is because of her that we’re figuring ourselves out.

The Early Red Flags: Hypermobility, Digestive Issues, Speech Problems and Intense Reactivity

Abby was adopted from China in September 2010 at the age of 10 months. Her birth and family history is unknown. She was found in a very poor district at three weeks old, underweight and jaundiced. She also had a congenital heart defect called atrial septal defect, which later closed up on its own. She was kept in ICU for a period of time. She was bottle fed until 10 months, then introduced to gluten and dairy. Orphanage caregivers reported she had a much heartier appetite than other babies (an early red flag that we all missed).

When we adopted her, we found her to be a very happy and social baby, who transitioned well. Her eye contact was always good. We did notice, however, her hips, elbows, knees, and fingers were hypermobile. In hindsight, we recognized that she played differently with infant toys. More red flags.

  • In October of 2010, she had her first post-adoption doctor’s appointment.
  • In December 2010, she was walking on her own. She tested positive for TB exposure and put on Isonaizid. She tested negative for lead. She became ill and was in pain for 10 days with diarrhea 3x day. We switched to Rifampin for the next 6 months. She was on Isonaizid and/or Rifampin from December 2010 through July 2011. Anti-tuberculosis antibiotics required monthly liver checks. She was vaccinated during this time as well, a mistake we came to regret. Our once happy child now became stoic and would remain so for nearly a year, but things had changed.
  • In spring of 2011, she experienced continuous and severe congestion along with loose stools.
  • In July we stopped Rifampin. She was a good eater, often ravenous.
  • In spring of 2012 we began speech therapy, 3x per week, but progress was slow. After removing gluten she spoke her first three word sentence.
  • July 2012 her hearing was checked. “Possibly mild frequency decrements. Minor issues”.
  • July 2013, probiotics stopped her diarrhea, unless she was exposed to a problematic food.
  • In 2014, we found she was a MTHFR 677ct double mutation. We strongly suspect she has a CBS mutation due to very strong reactions to various things: ALA, NAC, Epsom salts, CLO, methylated B12/Folate. Though over time, some of these we have been able to get in her in small amounts.
  • Over the next few years, and a multitude of negative tests, all we were able to determine was that her B12 levels were consistently high, even when not supplementing much, as were her B6 levels (though iodine brought her B6 levels down into the normal range). Creatinine was low, and a few amino acids were only slightly elevated. Prostaglandin F2 were extremely high and liver enzymes were elevated.

Despite all of this, Abby is a very happy, socially engaged and intelligent girl. Her speech has always been intermittent, ranging from very slurred to full complete clear “normal” sentences. It switches at random. Her former teacher of 5 years doesn’t think it is ASD, but in truth, it doesn’t really matter. Our kids are often labeled for the convenience of others.

Altered Pain Sensitivity

Abby appears to have a high pain threshold, except stomach pain. Since she was young, she has preferred to be barefoot and wore few clothes, even in winter. Over time this has changed and she has grown more “normal” in her body’s adjustment to temperatures.

The only observable nervous system affect was that she tightens/clenches her fingers when very excited. Excitement seems to trigger degranulation in her unstable mast cells. She had been extremely reluctant to draw, write, or color when young. She’s doing all this now, not as age-appropriate, but gaining.

She has had many problems with probiotics in the past; often creating an immediate OCD/stuffing whatever she could get her hands on behavior, under furniture, peeling birch tree bark for hours, etc.  Her brain was almost immediately affected.

Severe Reactions to Triggering Substances

Trying to solve her medical problems has been difficult. She has had so many reactions in the past when trying various vitamins/minerals and supplements recommended by her physicians. The results were always mixed and reactions could be extreme. We often, and still do, dose her vitamins and minerals separately, mixed together. Many reactions were not to the main ingredient, but to the binders or fillers added to the supplement. Some treatments would spur a short snippet of normal speech but only 1-2x then nothing more.

Below are the symptoms that we have been navigating.

  • Dry, itchy skin. Rashes, hives, angioedema, large welts from some foods/chemicals and insect bites.  Her skin feels like it’s on fire and she tore at her clothing after a small amount of Pure Vegetable Glycerin (99.9% pure) was applied. In 2015, her skin peeled off her arm, wrist to shoulder in a 3” wide band of deeply reddened dry/cracked skin, after eating non-organic strawberries. It looked like a third-degree burn, minus the blisters. Epsom salts, baking soda, Vick’s Vapor Rub, various other skin oils like jojoba, or almond oil, all caused painful reactions.
  • Severe abdominal pain. She experiences severe abdominal distress and pain after ingestion of various foods or charcoal-grilled food. She may also develop constipation/diarrhea, headaches/migraines. Probiotics often dramatically changed her behavior within an hour to severe OCD. Fruit-based digestive enzymes would cause facial rashes and behavior changes. Pancreatic enzymes caused much less speech, very quiet per her teachers.
  • Urinary. She was unable to urinate 9+ hours after ingesting cough syrup on two occasions. She was not dehydrated either time. She formerly had urinary incontinence on occasions and enuresis. The enuresis resolved with the addition of vitamin K2 MK7.
  • Insomnia. Occasionally she would develop insomnia, often after ingesting or exposure to an offending food or chemical. Tap water seems to be particularly problematic.
  • Behavioral. She has experienced severe OCD, irritability, extreme aggression/anger, hyperactivity.
  • Heart and Lungs. She develops a rapid heartbeat at rest and persistent coughing for 6+ hours following ingestion of a trigger.
  • Head and nose. Congestion, puffiness/eyes, headaches/migraines (based on focused tearing behavior).
  • Speech Problems. Her ability to speak various greatly relative to exposures. It goes from single words to full clear “normal” sentences. With gummy vitamins, recommended by her doctor, she developed a very notable and immediate regression in speech when she was four years old.  The day before she took the vitamins, she had clearly-spoken emerging speech, i.e., “I eat” “I do” “I wash”.  Immediately after giving her the vitamins, she walked about the entire day just saying “mmmmmm” over and over. Unsure of the cause, I was thinking dyes, rancid hydrogenated oil, or some such.  I would not make the sugar connection for a few more years.
  • Severe pain after exposures. She had a strong reaction to Cassia cinnamon. In class, she and other children were making Christmas ornaments with lots of Cassia cinnamon. Although none was ingested, her teacher said she was inhaling it and handling it for hours. Near pickup time, the teacher said she was not feeling well, began to be irritable, like her head hurt. As we were walking out of the building, she went down fast onto the ground and began writhing in pain (not sure if head or gut related). Teacher held her head to keep her from hitting it on the pavement, while I ran to get my Lavender essential oil rollerball. Applied it, and within a few minutes she was fine and got into the car. No further incident. Ceylon cinnamon causes no problems. Cassia can affect B1 levels, or so I read.

Our Journey to Healing Began With Vitamin K and Thiamine

In October 2018, we learned about thiamine and suspected that many of her problems may have been the results of a longstanding thiamine deficiency. We began in August slowly increasing Thiamine HCL. She began to improve at school, but results were inconsistent. We then moved to Benfotiamine for a while and results seemed better, but still inconsistent. By October, she was taking Sulbutiamine and we worked our way up slowly to 200 mg. Organic Acid Test (Great Plains) showed her lactic acid levels came down with the addition of the high dose of thiamine.

Nighttime enuresis persisted several years beyond toilet training. In 2016, we added approximately 700 mcg of vitamin K (MK7) working up slowly to this dose and her nighttime accidents completely stopped. The addition of vitamin K (MK4), reduced her food intolerances and allowed her to eat a broader diet, but that form of the vitamin did not stop the enuresis, the MK7 form did. We have since lowered her doses and now she just takes a D3/K2 liquid form with no return of the enuresis and food tolerances seem good, though we monitor her diet closely.

We use a variety of homeopathic remedies to treat reactions, illnesses, and injuries and reduce chemical exposures at home. Once her lactic acid levels came down into the normal range with the thiamine, we were able to add probiotics without negative reactions.

Her diet is mostly organic, grass-fed beef, organic chicken, wild-caught fish, cage-free eggs, local raw honey, coconut and olive oil, ghee, no GMOs. MTHFR mutations seems to be sensitive to gluten and dairy, but I wonder if that’s because of our need for the TTFD form of thiamine. She has been sugar free since July 2018.

My Big Takeaway: Healing Requires Resolving Nutrient Deficiencies Dependencies

EDS and ASD both share very similar nutritional deficiencies and/or dependencies. I wonder how much of autism isn’t simply the undiagnosed trio of EDS/MCAD/POTS. As most genetic testing is beyond the reach of most family budgets, it is difficult to know. It seems like it would be worth looking into one’s broad family history. A friend once told me that the foods we crave the most can be our biggest problems.

Years ago when Abby was in preschool, her teacher had me in for a conference. She showed me her notebook, which sadly only had a few scribbly lines in it. She slowly closed the book and moved it to one side. She looked me straight in the eyes and said “this isn’t autism”. Her son was on the spectrum. She said “Abby is smart, very, very smart. I think she’s gifted”. I looked at her dumbfounded, asking “then why?”.  She said, “I don’t know what’s going on, but she knows… she knows!” She proceeded to tell me something Abby did that proved to her unquestioningly her assessment. Giftedness and learning disabilities seem to share many commonalities.

We sort of figured some things out in reverse. For example, the MK4 form of vitamin K2 allowed for more food tolerances, and the MK7 stopped her enuresis. Bacteria in the gut (bacillus subtilus) produces K2, but then too much lactic acid was a problem because her thiamine was low and the CBS mutation seeming caused trouble as well. K2 seems to be very important in the distribution of calcium in the body.

We often see admonitions to heal the gut on the internet; so many opinions and recommendations. As Abby’s case suggests, it is far more complicated than simply taking a probiotic. It is also highly individual. Our daughter’s journey may not be applicable to someone else, but perhaps something can be gleaned.

We continue to avoid triggers, eat and live clean, heal the gut, use holistic remedies, play and laugh a lot. Thankfully, her reactions are now infrequent and fairly mild, but it was long road to get to this point. Her appetite is now normal with no real cravings or hunger extremes. We use vitamins/minerals, fish oil, and probiotics less cautiously now. She is gaining speech rapidly. She may still not be typical, but she is a far cry from what she had morphed into and much more normal than even a year ago.

We’ve been fortunate to avoid prescription drugs overall and use natural remedies, diet, and vitamins and minerals to affect change. We are avoiding further vaccinations, as our belief is her body has had enough and can’t deal with the stress at this time. Overall many people’s demeanor changes rapidly when mentioning alternative approaches to western medicine. If outside the norm, we may even be deemed a quack, but since we’ve been able to heal various family members of numerous ailments, if we’re seen as strange, so be it.  We can heal our bodies, probably not 100%, but often without prescription drugs.

Perhaps even the most complicated puzzles among us are not as hard to put together after all. We are still healing and our journey is not over. We tell ourselves and our kids to eat less junk because a nutrient-dense diet is helpful to everyone, but it seems that it is even more vital to those who suffer both the blessings and curses of a good brain.

Our brightest lights are ever so vulnerable.

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 August 19, 2020. 

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How Can Something As Simple as Thiamine Cause So Many Problems?

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I have read a criticism that thiamine deficiency is “too simple” to explain the devastating nature of the post Gardasil illnesses or the systemic adverse reactions to some medications. Sometimes, it is the simple and overlooked elements that are the most problematic.

Understanding Thiamine’s Role in Complex Adverse Reactions – The Limbic System

The lower part of the brain, called the brainstem, is a like computer, controlling the most basic aspects of survival, from breathing and heart rate, hunger and satiety, to fight or flight and reproduction. This computer-like function within the brainstem is called the autonomic system (ANS). The ANS together with the limbic system act in concert to regulate our most basic survival functions and behaviors. Both require thiamine to function.

Postural Orthostatic Tachycardia Syndrome or POTS , a type of dysautonomia (dysregulation of the autonomic system) seems to be the among the commonest manifestations of the Gardasil effect. Many cases have been diagnosed already, while others present all of the symptoms but have yet to receive a diagnosis. Dysautonomia and POTS have also been observed with adverse reactions to other medications, as well. Dysautonomia and POTS, at the most basic level, represent a chaotic state of the limbic-autonomic system. Let me explain.

Fragmented Fight or Flight

The brainstem autonomic system together with the limbic system enable us to adapt to our environment, presiding over a number of reflexes that allow us to survive. For example, fight-or-flight is a survival reflex, triggered by perception of a dangerous incident that helps us to kill the enemy or escape. This kind of “stress event” in our ancestors was different from that we experience today. Wild animal predators have been replaced by taxes/business deadlines/rush hour traffic etc. These are the sources of modern stress. The beneficial effect is that the entire brain/body is geared to physical and mental response. However, it is designed for short term action and consumes energy rapidly. Prolonged action is literally exhausting and results in the sensation of fatigue. In the world of today where dietary mayhem is widespread, this is commonly represented as Panic Attacks, usually treated as psychological. They are really fragmented fight-or-flight reflexes that are triggered too easily because of abnormal brain chemistry.

Thiamine and Oxidative Metabolism: The Missing Spark Plug

Our brain computers rely completely on oxidative metabolism represented simply thus:

Fuel + Oxygen + Catalyst = Energy

Each of our one hundred trillion body/brain cells is kept alive and functioning because of this reaction. It all takes place in micro “fireplaces” known as mitochondria. Oxygen combines with fuel (food) to cause burning or the combustion – think fuel combustion engine. We need fuel, or gasoline, to burn and spark plugs to ignite in order for the engines to run.

In our body/brain cells it is called oxidation. The catalysts are the naturally occurring chemicals we call vitamins (vital to life). Like a spark plug, they “ignite” the food (fuel). Absence of ANY of the three components spells death.

Antioxidants like vitamin C protect us from the predictable “sparks” (as a normal effect of combustion) known as “oxidative stress”.  Vitamin B1, is the spark plug, the catalyst for these reactions. As vitamin B1, thiamine, or any other vitamin deficiency continues, more and more damage occurs in the limbic system because that is where oxygen consumption has the heaviest demand in the entire body. This part of the brain is extremely sensitive to thiamine deficiency.

Why Might Gardasil Lead to Thiamine Deficiency?

We do not know for sure how Gardasil or other vaccines or medications have elicited thiamine deficiency, but they have. We have two girls and one boy, tested and confirmed so far. More testing is underway. Thiamine deficiency in these cases may not be pure dietary deficiency. It is more likely to be damage to the utilization of thiamine from as yet an unknown mechanism, affecting the balance of the autonomic (automatic) nervous system. It is certainly able to explain POTS (one of the many conditions that produce abnormal ANS function) in two Gardasil affected girls. Beriberi, the classic B1 deficiency disease, is the prototype for ANS disease. Administration of thiamine will not necessarily bring about a cure, depending on time since onset of symptoms, but it may help.

Thiamine Deficiency Appetite and Eating Disorders

Using beriberi as a model, let us take appetite as an example of one of its many symptoms. When we put food into the stomach, it automatically sends a signal to a “satiety center” in the computer. As we fill the stomach, the signals crescendo and the satiety center ultimately tells us that we have eaten enough. Thiamine deficiency affects the satiety center, wrecking its normal action. Paradoxically it can cause anorexia (loss of appetite) or the very opposite, a voracious appetite that is never satisfied and may even go on to vomiting. It can also shift from anorexia to being voracious at different times within a given patient. That is why Anorexia Nervosa and Bulimia represent one disease, not two.

Thiamine Deficiency, Heart Rate and Breathing

The autonomic nervous system, responsible for fight or flight, regulates heart activity, accelerating or decelerating according to need. So heart palpitations are common in thiamine deficiency. Its most vital action is in control of automatic breathing and thiamine deficiency has long been known to cause infancy sudden death from failure of this center in brainstem.

Thiamine Deficiency and Sympathetic – Parasympathetic Regulation

The hypothalamus is in the center of the brain computer and it presides over the ANS, as well as the endocrine (hormone) system. The ANS has two channels of communication known as sympathetic (governs action) and parasympathetic (governs the body mechanisms that can be performed when we are in a safe environment: e.g. bowel activity, sleep, etc.). When the ANS system is damaged, sometimes by genetic influence, but more commonly by poor diet (fuel), our adaptive ability is impaired. A marginal energy situation might become full blown by a stress factor. In this light, we can view vaccines and medications as stress factors. From false signal interpretation, we may feel cold in a warm environment, exhibiting “goose bumps on the skin”, or we may feel hot in a cold environment and experience profuse sweating. The overriding fatigue is an exhibition of cellular energy failure in brain perception.

Sometimes, it really is the simple, overlooked, elements that cause the most devastating consequences to human health. Thiamine deficiency is one of those elements.

To learn more about thiamine testing: Thiamine Deficiency Testing: Understanding the Labs.

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. 

Photo by Robina Weermeijer on Unsplash.

This article was published originally in October 2013.

 

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Childhood Seizures Precipitated by Thiamine Deficiency

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The seizures started for the first time with a frightened expression in my then 4 year old precious daughter’s eyes, and I thought she had seen a ghost. She held her chest, looked wide eyed, ran over to me and buried her head into my stomach where I felt her heart beating hard and fast. It lasted a few seconds and then I reassured her and on went on. She said it was like strong butterflies in her belly. It also was the morning after her lovely grandparents left after a 3-month visit back to Ireland and we were all very sad.

For approximately one year prior to this, she had been complaining of stomach aches, top and bottom, occasionally under her ribs. She had reduced appetite and a very worrying paleness. She also was very car-sick so we had to prepare for longer journeys. I had been to the ER after Christmas lunch when she had terrible stomach pain. She was checked to be ‘fine’ but I was advised to see a pediatrician to follow up.

Panic Attacks or Seizures?

Basic blood tests confirmed she was in ‘great health’, with the only thing they found in a stool test being h-pylori. So it was their opinion that she wasn’t having seizures but instead must be anxiety/panic attacks as she is a sensitive child. I was always skeptical, but in absence of any other data, we waited a long time for the referred psychologist. After 3 sessions, I realized they had no intel and were chasing the wrong dragon. I kept saying she looked somewhat unwell. The seizures were happening quite infrequently then, perhaps one episode a month, or every 2-3 weeks, but then when she started kindergarten they ramped up a little more frequently. She would stop, look to be catching her breath, hand twisting for a few seconds and then it was over. I thought it was a reaction to the food they fed her there that we didn’t have at home, or a recent childhood vaccination or that she hated being away from me there. I also noticed she reacted with bad behavior and potential episodes after certain foods- e.g. ice cream especially and any food dyes/flavors. So our already healthy diet went up a notch to exclude these. I also did gluten and dairy free on advice from naturopaths. It was strict and sad.

Then these episodes changed to resemble a seizure more directly, not a panic attack. I got rid of the useless pediatrician who was actively gaslighting me to try to minimize the symptoms or their own incompetence and I demanded to see a neurologist. It was again a very long waiting game. When the day came, we were very nervous but were looking forward to some potential answers. He was a neurologist at a prominent Children’s Hospital, so I had high expectations. I still had many questions and areas to workshop but after he ran through my extensive notes and a video I took, he said ”let me stop you, She has epilepsy and ‘NOTHING YOU DO WILL EVER MAKE A DIFFERENCE. She will need medication for life and if that fails an operation”. This was also via video link, as it was during a Covid lockdown. No physical examination and a script sent in the mail. I accepted these, as I know you don’t refuse unless you want trouble, but my intention was to never band-aid or experiment, especially not with a young child and my family’s history of sensitivity to medication. Thank god he lied so blatantly when he said ”there’s no side effects from the anti-seizure meds” to know we weren’t dealing with the truth or someone who could be trusted.

We did another two MRIs, but they were clear. They wanted a third with dye contrast but I refused that and as I learned more about her case, know why I felt so strongly about that.

A Parade of Doctors

We embarked on the alternative/functional medicine pathway, as that is something I am familiar with. I didn’t realize how challenging it was going to be. We went from one to the other. I was constantly seeking experts who possibly knew more than the last. I needed help to decode this horror. I know a healthy child doesn’t get a whisper of issues that then progress to a scream over years for no reason.

With each new practitioner, we did another test. This included blood tests, stool test, hair tests, OAT test, Pyrrole and extensive Genetic testing. She was found to have higher copper ceruloplasmin to be treated simply with zinc, which was always met with a seizure so we stopped that. She had high vitamin D and B12, but another test found that potentially wasn’t a true representation. It can be in the blood reading but not necessarily in her cell. This is where you really throw your hands-up and say what chance do we have if some test results can also be falsely represented!!!!!

The genetic testing provided the best clue that we weren’t dealing with an easy case- she had heterozygous compound MTHFR, and many other compromising genes that are not ideal on many pathways, especially detox. This also got me remembering how I haven’t felt optimal for years. I put it down to extreme stress with my daughter. A huge thing I always wanted to understand was why I was so incredibly sick with Hyperemesis Gravidarum the entire pregnancy with her. I have always believed this had to have impacted her somewhere but could never nail down a connection.

After 5 naturopaths and numerous consults from other medical professionals, listening to one bogus diet restriction after the next, many different versions of expensive supplements that basically all triggered her. Nothing was working. She was having seizures weekly or more particularly is she was sick or overly stressed. The closest theory I could deduce of was a type of MCAS or histamine intolerance and the symptoms were:

  • Crying out prior
  • Frequently occurring in sleep waking her bolt upright
  • Hyperventilation/can’t get air
  • Big scared eyes
  • Drooling, disorientated
  • Body shaking, head was twisting hard to the side like dystonia, arms curled, torso completely contorted.

This would last for about 30 sec-1 min. The horror of witnessing this is imprinted on my soul forever. She began to lose balance so we would have to grab and hold her and I would blow hard in her face to try to get it to finish. It started to become dangerous if we weren’t around to catch her.

I also simultaneously worked back one item at a time to try to fix every variable I could, including environmental. There was a mold spot in our house in the room she slept in the bathroom. It took a long time to get repaired, I pondered about that exposure and if the builder actually fixed the leak properly. Our awful neighbor had smoky barbeques numerous times a week on the fence-line using building offcut wood. The smoke permeated our house. We sold our house to see if that made a difference and moved to the country with my parents’ house in the green clean air.

Thiamine and Riboflavin Deficiencies With Genetic Underpinnings

I finally found a practitioner trained in epigenetics with a naturopath background as I wanted someone like Ben Lynch. His YouTube videos were the only things that made sense to break down a complex health issue. She was a blessing and truly eclipsed the level of detail of knowledge (and empathy) by all others. She looked at the OAT test (shown to 5 people previously) and saw immediately she had very high lactic acid and some other markers indicating thiamine deficiency, critically followed by a riboflavin (B2) deficiency. She advised to not give a B complex and work through one at a time.

When we tried to treat this with thiamine and a B2 capsule. I am sure she had a paradoxical reaction as she had 8 seizures in the night. It was horrifying. I wanted to abort this plan like so many other failed attempts, as I never prolong anything that’s not showing positive traction, but something told me to break it down and do one step at a time. I went back into her genetics myself and looked at the thiamine related genes. She had homozygous defects in a key thiamine transporter (SLC19A2) and an enzyme (thiamine pyrophosphokinase – TPK1) that turns free thiamine into its bioactive form thiamine pyrophosphate. She also had SNPs in several other key thiamine genes, in addition to SNPs in several other mitochondrial genes.

I also came across and watched Elliot Overton’s Thiamine videos on YouTube and how to correctly dose-up. I also read many insightful articles on the Hormones Matter website. I tried again with low dose of b1 (about 5mg), some magnesium and potassium-coconut water. The seizures, in the midst of a horrible flare, stopped immediately and didn’t return for over 2 months. I dosed twice a day and worked up to 50mg of thiamine in total, which is where she is currently. She also got much better color in her face. It truly felt like a miracle!

What Else Are We Missing?

The miracle, however, ended and the seizures have been creeping back in and I’m not sure why. They seem not quite as severe in presentation, however they still occur about once a week to every 2 weeks. I need to understand why and how to help her as my intuition screams at me to find the answer, and quick! She is now 8 years old and I am struggling to comprehend any more of her childhood being stolen.

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.

Yes, I would like to support Hormones Matter. 

Photo by Noah Silliman on Unsplash

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