parasites

Parasites Ate My Thiamine!

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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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Post Concussive Metabolic Dysfunction in a Dancer

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

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

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

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

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

Declining Metabolic Function and Weight Gain

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

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

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

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

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

Hair Loss, Pale Skin, and Skyrocketing Weight

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

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

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

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

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

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

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

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

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

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

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

Failed Treatments and Inconclusive Diagnoses

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

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

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

Where We Are Now: Was It Thiamine All Along?

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

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

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

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

Current Diet and Supplements

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

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

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

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Image by Dimitris Doukas from Pixabay.

This story was published originally on August 10, 2020.