My journey with Gardasil began innocently in Australia. In 2008 after two years of pervasive marketing, I fit right within the 26 years old ‘market segment’. I qualified for a free vaccination. Little did I know what was about to hit me; not once, but three times.
Health and Vaccination History Pre-Gardasil
I was in good health prior to Gardasil; hard working, athletic and traveling extensively. I had all the required vaccines by the French medical authorities for a person from my generation.
Between 2006-2007 corresponding to the beginning of my Master’s degree, I was injected with a number of vaccines that I thought, based on medical advice, were needed to cover international travel: diphtheria, typhoid, yellow fever, hepatitis A and B, the flu vaccine, and a tetanus boost.
Mid-2008, I had my first shot of Gardasil (20/06/2008 GARDASIL SEQUENCE 1, Batch No.K0176). My second shot was in October 2008 (10/10/2008 GARDASIL SEQUENCE 2, Batch No.K2307). The 3rd sequence of Gardasil was injected in February 2009 (05/02/2009 GARDASIL SEQUENCE 3, Batch No.K5754).
Post Gardasil: Severe Hypersomnia, Dizziness, Tremors and Weight Loss
A flu-like episode with high fever lasting over a week occurred following the second vaccine shot. Full-blown hypersomnia first manifested when I fell into a deep sleep for 17 hours straight. Somnolence worsened for several months after the 2nd and 3rd Gardasil shots, until suddenly, and seemingly out of the blue, I was able to be awake for an average of 45 minutes to 3 hours a day.
During that initial phase of the syndrome, lifting a fork to eat, cooking and even walking to the kitchen were all too much effort. I needed to lie down or I would fall asleep on my computer keyboard. As I did not know the difference between tiredness and somnolence, I had difficulty explaining my initial symptoms to my doctors; yawning away through consultations until my post-consultation nap.
I experienced severe dizziness for the first time in what was to become a recurrent manifestation of this syndrome for the next five years. The dizziness intensified to the point of losing balance. I could no longer attend my regular weight-lifting classes: the floor would spin when I would pick up the weights. I tried to fight the lack of balance with my mind-over-matter method. I even managed to drag myself to a gym class during those first days of illness, seeking to force my body back into action. I thought willpower alone could jerk my body back into functioning. It didn’t work. My attempt was met with a record 10 minutes in a BodyPump class, followed by several hours of sleep. After 10 days of this dizziness and somnolence, I asked a friend to drive me to a doctor.
The Parade of Doctors Begins: Untangling the Gardasil Reaction
Doctor #1, my regular GP, said I was fine and just to rest. By then I also had hand tremors as well as dizziness and somnolence. I went to doctor #2, this time at our University Health Center. She ordered blood tests, all of which came back normal. I recall her telling me that I was healthy and that it was ‘all in my head’. Supposedly, the tremors that she could clearly observe were ‘all in my head’. She thought I was faking my symptoms. Within the next six weeks, I went to see doctor #3. Her diagnosis was Chronic Fatigue Syndrome (CFS) because I had – in her terms – ‘burned out my neurons’ through extensive intellectual efforts.
The next five months are a blur. I don’t recall much other than sleeping. I remember falling asleep everywhere instantly. I would fall asleep slumped on my desk or anywhere I sat. I would warn taxi drivers that I might fall asleep in their cab, and ask them to kindly wake me up at destination should this happen. This was in addition to the 10-12 hours per night I would sleep and the several hour naps I had in the morning and in the afternoon every single day.
More Doctors and More Symptoms
I moved from Australia to France and saw doctor #4. Soon, a new symptom began. It was tachycardia (rapid heart rate). My heart would pound furiously and I would be out of breath going up stairs, despite how athletic I had been just a few months before. Doctor #4 exhausted all possible tests and he referred me to an internal medicine specialist at Foch Hospital in France, doctor # 5. He suggested narcolepsy in his referral letter.
By then I had developed intense salt cravings which went hand in hand with the dizziness and tremendous thirst. During ‘waves’ of extreme somnolence, I had noticed that eating salt helped. I would ask for a bag of potato chips, to which I would add a lot of extra salt. Overtime, I figured out that it had to be sea salt otherwise it did not have the same effect on the dizziness or other symptoms. During these episodes I slurred my speech and had trouble speaking. This was often accompanied by major episodes of somnolence. I had noted that any exertion of physical energy was profoundly draining (e.g. walking, standing up, cooking); so too would mental energy demands such as strong emotions, empathy or anger. If became angry, I would fall asleep, as if the energy output required for anger was too much demand on my already drained body.
Since my salt cravings were so intense, doctor #5 suggested a series of tests, including one for adrenal gland tumors. This was July 2010. All the tests came back normal apart from a vitamin D deficiency.
Doctor #5: Narcolepsy without Cataplexy?
Doctor #5 concluded that I had narcolepsy without cataplexy since I had the capacity to sit down before falling asleep, rather than the cataplexy associated with collapsing asleep. He prescribed 300mg/day of Modiodal (Modafinil-Australia; Provigil-US).
The results of the treatment with Modiodal were tremendous. Since this ‘wake-promoting agent’ is used in combat by special forces, it was bound to help me control my somnolence. I was able to get much more done during the day, although I was still extremely somnolent. I began my weight-lifting class again, with better results, but I still needed 2 to 3 hours of sleep after a class and I was still dizzy and had all the other associated, up-to-then unexplainable symptoms.
Oh Wait, not Really – Says Doctor #6
In October 2010, I saw a sleep specialist, doctor #6. She told me:
“I see a lot of women like you. Women in your generation have a lot of pressure professionally and personally. You don’t have narcolepsy. You have psychogenic hypersomnia because you have been through a lot professionally and personally.”
In other words, she was implying that it was all in my head. She suggested that I would recover in about six months and did not run any tests in the sleep lab. She prescribed 400mg of Modiodal a day and told me to resist somnolence during the day to seek to force my body back into a wake-sleep routine. So I tried, although not too successfully. By then I had my nap armchair at work where I would have 10-minute power naps when I was too somnolent and dizzy. The increase in medication helped me resist the daytime somnolence but all of the other symptoms remained and some new ones appeared. I was now very sensitive to sound and light and needed sunglasses even indoors.
Powering Through my Declining Health Post Gardasil
Gradually, it seems that my body adjusted to the higher dose of Modiodal and I developed a tolerance for the dizziness and the somnolence. I enrolled in a Ph.D. program in November 2010. By early 2011 – I was both working full-time and starting a Ph.D. Being highly determined, I thought I would make my body function again, and yes, I was going to do this Ph.D. and to have this full-time job despite whatever tantrum my body was having with its dizziness, somnolence and other symptoms. I kept powering through. I thought the diagnosis of hypersomnia was final.
Another Six Months and Still No Improvement
Six months after doctor #6 told me I would be healed, I was no better. Her explanation for my lack of recovery was my “hectic” lifestyle. She told me, “you work too hard, give it another year, you should be fully resting for 6 full months but I understand you have to work.”
I was not making any progress on the somnolence, the dizziness, the light and noise sensitivity, or the salt cravings and thirst. I could barely hold it together on the physical front to keep up a career and my PHD. I did not have any energy to look more into the medical puzzle I was facing.
During the treatment when Modiodal was working well, doctor #6 tried another medication on me – to replace the Modiodal due to some changes in government funding for this medication which apparently did not qualify anymore for non-narcoleptics. She prescribed 80 mg of Ritalin. By early 2012, this new anti-somnolence medication made me extremely ill, so she changed the prescription back to Modiodal. My weight had plummeted to a low 48kg, despite eating normally.
US Doctors Post Gardasil: Pieces to the Puzzle
From late 2012 to early 2013, I spent six months in the US. I needed to follow-up on the hypersomnia. I met doctor #7 in the US and put him in touch with doctor #6 in France. I told him that I was convinced I was not properly diagnosed. ‘Psychogenic’ hypersomnia sounded like nonsense to me and it was increasingly obvious that we needed to reassess the symptoms. I told him that I was very dizzy most of the time, that light sensitivity had increased to a point of needing sunglasses indoors, that I had salt cravings etc. Also by then I was particularly skinny. I told him that I had discovered that exercise was allowing me to function without dizziness for a few hours, post weight-lifting especially. I started noticing a thick dry scale on my scalp. It was not dandruff and the inflammation – whatever it was – was very painful. Some new diagnoses emerged.
- Hypothyroid. Doctor #7 in the US identified that I was hypothyroid. The thyroid stimulating hormone (TSH) levels came back high at 7.89 uIU/mL indicating that I was hypothyroid in spite of being skinny. Gaining weight is more common with this thyroid condition. Doctor #7 thought that the hypersomnia was due to the hypothyroidism, and that levothyroxine would fix it all, the hypersomnolence, the dizziness, and the light sensitivity. This was in January 2013. He referred me to a sleep specialist for further testing and a dermatologist for the scalp problem.
- Low Potassium. I was also found to have low potassium levels although nothing much was thought of it at the time. This was a relevant clue as we shall see later in this post.
- Vitamin B Deficiency. The dermatologist, doctor #8, tested me for tropical parasites given the countries I had traveled to. All came back normal. She seemed concerned though and suggested a complex of vitamin B supplements because in her experience, deficiencies in certain forms of vitamin B can trigger these sort of dermatological manifestations. I had no time to follow-up with her due to travel, nor to order the vitamins. I was too focused on the dizziness and hypersomnia and newly discovered thyroid problems and could not fathom a link to a vitamin deficiency. In retrospect, with what I now know of thiamin deficiency, I realize she was probably correct.
- Back to Narcolepsy. The sleep specialist in the US, doctor #9, requested a sleep study because he suspected narcolepsy without cataplexy. He told me that I did not fit into the typical narcoleptic profile. The sleep study was done in February 2013 after 13 days of weaning myself off the Modiodal (yet having started the levothyroxine). By the time I completely weaned myself off the Modiodal for the sleep study, I could not exercise anymore and I was back to falling asleep all the time. In fact the sleep technician had to walk into the test room to wake me up during the day-time part of the sleep study because – as those who have done sleep studies know – you have to stay awake during certain periods of time for the tests to be valid. I was unable to resist the somnolence and was falling asleep uncontrollably on my ‘wake-up’ chair. I had an average of 4.75 minutes in a Multiple Sleep Latency Test (MSLT), indicative of severe somnolence. I communicated the information to doctor #6 in France.
Post Gardasil Idiopathic Hypersomnia, Plus Hypothyroid
Doctor #9, seeing the results of the sleep test, told me it was clearly NOT psychogenic hypersomnia and clearly not Chronic Fatigue Syndrome (CFS). It was not narcolepsy either. He suggested ‘idiopathic’ hypersomnia or ‘vaccine-related’ hypersomnia. I was also shown to have mild sleep apnea. By April 2013 I had abnormally high Reverse T3 levels and Thyroxine (T4) levels despite normal TSH levels. I went back to doctor #7. We agreed to increase the levothyroxine to 100Mcg per day.
Back to France – Finding Support at Monastery
I had to leave the US in April 2013 to defend my PhD in France. Doctor #9, the sleep-specialist in the US, kindly gave me the equivalent of Modiodal samples for 3 months: I could not order more than one month of Modiodal at a time and had no more medical coverage in France. To manage the hypersomnia, I was given instead of 400mg of Modiodal per day, 250mg of Armodafinil a day. So there I was in France, in a new town, actually in a monastery, between April 2013 and August 2013.
Diet and Exercise Clues: Possible Mitochondrial Dysfunction Post Gardasil
By then I had noticed that sugar and other carbohydrates triggered somnolence. Complex carbohydrates did not affect me. This was in addition to the extra sea salt at strategic times to reduce episodes of somnolence. The extra salt induced extreme thirst most of the time. I found that weightlifting would allow me to function without dizziness for about 24 hours, and 15 to 30 minutes of jogging would give me 4-6 hours of functioning without dizziness. In fact, when I felt most dizzy – if I did pushups or lifted weights – I was guaranteed a reduction in dizziness. I communicated this with Dr. Marrs at her website, Hormones Matter. She had found research showing that exercise induced mitochondrial biogenesis. Somehow, my body knew that too, although, at the time I had no idea why it worked.
At one point during my stay at the monastery, my symptoms worsened. I developed what is called “tunnel vision” and the light sensitivity became extreme. I needed to wear my sunglasses most of the time, even indoors. I needed eye drops otherwise my eyes would burn. I felt like I was passing out most of the time. My eye bags were strange. They went down to my jawbones across the cheeks. Noise and conversations would exhaust me. I started eating on my own, not in the commissary with the others. This coincided with the re-emergence of heart palpitations. I was unable to run. Some monks and nuns began asking me if I was eating enough. No matter what or how much I ate, I would not gain wait. I kept losing weight.
This was probably the worst time of the illness. When the dizziness would manifest, I would feel like my energy was being completely drained from my body. If I could put to words the mental image I had when this would happen, it was as if light – I take as representing my energy levels – was leaking or rather shooting upwards from the top middle part of my skull. However delirious this sounds, and I was very ill, somehow I took it as my body telling me through the delirium that there was ‘an energy leak’. That was my inspiration to find a way to heal and my task was to find the biochemical source of this ‘leak’.
Hashimoto’s and Low Gammaglobulin
I went to see doctor #10 in a small village in Southern France. TSH levels had gone down to 0.1 so I had shifted from hypothyroid to hyperthyroid. We found out that I had in fact Hashimoto’s disease in addition to the ‘idiopathic’ hypersomnia. I had hypogammaglobulinemia and low total protein levels. I had lost 7 kilos between February 2013 and June 2013. Here again, Dr. Marrs had written about post Gardasil Hashimoto’s.
Doctor #10 told me to reduce the levothyroxine, and that I should see a blood specialist in hospital due to the hypogammaglobulinemia. The blood specialist was on holiday. Concerned with the way my health was degrading, I called a friend in Paris. Worried, and with the best of intentions, he sought to help me out and called another doctor in Paris for advice. I was subsequently told I had an appointment with doctor #11.
Doctor #11 was Lecherous
I saw doctor #11 in Paris and he told me that the Gardasil vaccine had no side effects, and that obviously all of my symptoms are in my head. So there, about 4 weeks before defending my Ph.D., an expensive doctor who knew nothing about my health asked that I stop taking the medicine that keeps me awake despite the hypersomnia and gave me a prescription for lithium ‘to help’ me wean myself off the Modiodal. He then proceeded to quiz me on my sex life, alluding to some throwback of female hysteria and repressed sexuality as a diagnosis. He seemed way too tickled by what he imagined was my sex life than in the debilitating health problems I was bringing to the medical consultation. Out of the blue, he asked: ‘do you have any issues climaxing?’. To this day I do not know how to relate his question to my light sensitivity, hypersomnia, salt-cravings, hand tremors, thirst, Hashimoto’s, dizziness and palpitations.
I became concerned when he intimated that, should all results come back negative, and he made sure I knew he thought they would come back negative, that he would prescribe appointments with a retired psychiatrist, a friend of his, to work on my thought patterns. He then calmly alluded to electroshock treatment on patients around my age at a clinic he was working at in Canada decades ago as a very good technique to retrain psychosomatic women. Yes, an expensive doctor who liked at one point in his life to experiment with electroshocks on ill women. As my exit strategy with this strange character, I told him I would indeed stop the Modiodal and go ahead with the lab tests.
I headed straight back to the monastery in Southern France, more perplexed with my health than before traveling. I arrived at the monastery almost destabilized. When I told the Mother Superior about the tone of the appointment, she burst out laughing. Her humor comforted me tremendously.
Doctor #12 – Managing the Hashimoto’s Post Gardasil
The next day, other friends had organized a medical appointment in a hospital in Montpellier, in Southern France, with an endocrinologist, doctor #12. She confirmed Hashimoto’s and asked that my thyroxine dosage be reduced. She referred me to an internist doctor closer to the monastery in another hospital.
Doctor # 13 – Probably Gardasil but You’ll Have to Live with It
Doctor #13 was an oncologist, in-hospital internal medicine. He ran a number of other tests and another MRI for pituitary issues. All came back normal apart from the thyroid function, but we already knew that. At one point he suggested we test for Breimer’s disease, however, the tests showed normal vitamin B12 levels. Tests for Lupus came back negative.
Doctor #13 told me that medicine was not advanced enough to offer me a clear diagnosis. He told me that possibly Gardasil triggered the hypersomnia, but that at this point in time without the exact mechanisms or the source of my syndrome, I’d have to live with the state of ‘no diagnosis’.
Despite my degrading health, somehow I defended and passed my Ph.D. in July 2013. In August 2013, I headed back to Australia.
Treating Post Gardasil Reactions in Australia – Doctors 14, 15 and 16
I needed a sleep specialist in Australia for the treatment of the hypersomnia. I had to get another GP (doctor #14) and sleep specialist in Australia, doctor #15. The sleep specialist was very attentive and made sure I could continue with the anti-somnolence medication. He also suggested we try a CPAP machine due to the minor sleep apnea. He started communicating with doctor #9 in the US. He mentioned that in children, what is considered ‘minor’ sleep apnea can trigger all sorts of health problems. Excessive coughing did not make it possible to continue with the trial test.
Since finding out I had Hashimoto’s in addition to the hypersomnia, and that my blood results were off, I was convinced of the need to refine the diagnosis. It was time to change tactics.
I went back to doctor #14, my new GP in Australia and shared my concerns. I also requested a referral to an endocrinologist to manage the thyroid disease I now have. She organized a referral to an endocrinologist, doctor #16. The endocrinologist was oblivious to the set of symptoms that accompanied Hashimoto’s. In only two visits, she managed to stabilize my TSH levels with 93.25 Mcg Eutroxsig per day and that was it. She did not want to see me for another year – to her the entity she was treating was Hashimoto’s and was unrelated to the other set of symptoms. She suggested yoga to reduce salt-cravings and light sensitivity; thereby implying these other symptoms were unrelated to an underlying medical condition.
I went back to doctor #14. My thirst and salt cravings, my light and noise sensitivity were so bad. I was exercising with military discipline to fight the dizziness, to counter what I now understand to probably be mitochondrial injury. I asked doctor #14 to run a number of tests and also to find an immunologist for me. The sleep specialist, doctor #15 in Australia, supported my consulting an immunologist because of my difficulties fighting infections and also low IgA, Hashimoto’s etc. Doctor #14 listened to him and while organizing an appointment with the immunologist he suggested, she also sent me to see a General Physician, doctor #18. Doctor #18 was more interested to know whether or not I had had breast augmentation ‘due to their shape’ than in my actual health concerns. He was an Australian version of French doctor #11. Needless to say, I never went back.
Meanwhile, I had learned through the Hormones Matter website, thanks to Dr. Chandler Marrs’ work, Dr. Derrick Lonsdale’s expertise, and a courageous mother, that four patients with unusual symptoms post-Gardasil (3 girls and a boy) had been tested and found to be thiamine (thiamin) deficient, using the erythrocyte transketolase test. Beriberi was at the core of their symptoms, and for whom doctors were able to do nothing prior to that diagnosis.
I tried to get the correct test for this deficiency. This was in September 2013. After six weeks of emails to three doctors (two in-hospital specialists and doctor #14), explaining the different types of thiamine testing, I realized I was getting nowhere. I learned then that doctor #14, was under pressure by the boss of her practice to stop ordering tests for me. Even though I am not depressed, she offered anti-depressants. I decided not to return. I went on a hunt for another GP to replace doctor #14. The new GP, doctor #19 ran a number of tests linked to nutrient absorption issues. All were normal.
Finally, an Ally – Doctor #17
In October 2013, my total protein levels were still low, IgA was low and I had very low vitamin D. Antithyroid peroxidase (TPO) was high. I had low potassium levels again (3.1mmol/L), which was consistent with the low potassium levels noted months earlier. (I now understand that this is typical of thiamine deficiency, or Beriberi). I also had a consistently low white cell count measured in France and in Australia.
Thanks to doctor #15, I met doctor #17, an Australian in-hospital immunologist who ordered another series of tests. He was interested in Derrick Lonsdale’s articles on the post Gardasil thiamine deficiency. Thanks to Dr. Marrs’ encouragement, they wrote to each other. We tried to get the thiamine deficiency test done in Australia. It was impossible to locate one lab that could do the correct testing. In September 2013 and October 2013, whole blood B1 levels were normal, at 143nmol/L (lab range: 66-200) and at 65ug/L (lab range: 28-85). Yet what needed to be tested was the activity of thiamine. Dr. Derrick Lonsdale makes it exceedingly clear that measuring transketolase is the only way to show that the activity of thiamine is normal. Transketolase requires two cofactors, thiamine and magnesium. The erythrocyte transketolase test is designed to show their deficiency or abnormal chemistry by detecting the activity of the enzyme.
While I was in a Southeast Asian country in November 2013, I tried again to get the erythrocyte transketolase test done. No luck. I tried getting the test in Japan through doctor #20, a researcher who was contacted for me in Japan. Beriberi is more common in Japan – I thought – they had to have labs for this, right? I asked the Japanese through a researcher in France, doctor #21. He tried six labs in Japan. No luck.
By late November 2013, after repeated failed attempts to get the transketolase test and my continued worsening health, Doctor #17, the immunologist, and I decided we would just try the thiamine replacement treatment with TTFD suggested by Derrick Lonsdale. Dr. Lonsdale tells me that TTFD stands for thiamine tetrahydrofurfuryl disulfide. It is the synthetic equivalent of allithiamine, the naturally occurring disulfide derivative of vitamin B1(thiamine) in garlic. Clinical, animal experiments and biochemical research all have shown that it has therapeutic properties far beyond those of simple thiamine replacement.
Please do not try this alone without a doctor’s supervision as there can be dangerous paradoxical reactions.
Thiamine Replacement Treatment – Surviving the Paradoxical Reactions
I started in November with 100mg / day of TTFD. After 5 days I decreased the dose to 50mg / day. I had been warned by Dr. Lonsdale of the initial worsening of symptoms that he calls ‘paradox’. So I knew that my symptoms might get worse before they got better. I had no idea how severe that paradoxical reaction would be!
I want to explain this thing that Dr. Lonsdale calls ‘paradox’. He explained it to me as follows:
Unfortunately, we disregard history and the struggles that researchers went through in order to define the cause of the vitamin deficiency disease, beriberi. These are simply lost to the awareness of the modern physician. It was well known, when this disease was common, that the dangerous time of initiating treatment was directly proportional to the severity of the disease and how long it had been in existence. Under no accounts whatever should POTS be treated with TTFD without the care of a knowledgeable physician.
The initial phase of TTFD intake landed me four times in hospital emergency with extreme dizziness and heart palpitations over a period of five weeks. On one occasion, I was in two different hospitals in one day with chest pains and palpitations and very severe dizziness. On another instance, the gym called in an ambulance when my heart rate would not go down and I was extremely dizzy and incoherent. I recall blurting out to some petrified gym staff that I needed to have my ‘heart pulse’ monitored when in fact I meant heart rate.
In ER visits, I met resident doctors #22 and #23. One wanted me to see a neurologist and an endocrinologist. Her letter: ‘Presents L sided chest pain – sharp pinching pain…objectively in emergency. No criteria for admission @ present… would benefit from a review by both neurologist and endocrinologist’. One other resident in another hospital wanted me to see a cardiologist: ‘intermittent palpitations… thank you for seeing this patient for consideration of halter monitor’. Both were baffled by my symptoms. Dr. Lonsdale explained that this was a normal and expected temporary effect. My last ER visit was early December 2013.
Are the Post Gardasil Illnesses Related to Thiamine Deficiency?
Dr. Lonsdale’s work shows a connection between thiamine deficiency and dysautonomia. Thiamine deficiency Beriberi is actually a prototype for dysautonomia in its early stages because it affects the hypothalamic/autonomic/endocrine axis. I am inclined to agree, given my recent experience. Whether I was thiamine deficient prior to the vaccine or not, is now impossible to determine. What has become clear is that post Gardasil vaccine, my body went into a tailspin, for which no prior diagnosis or offered treatment worked.
I now understand that the symptoms of my condition are indicative of three forms of dysautonomia, all of which appear to have been induced by thiamine deficiency: the postural and orthostatic components of POTS were indicated by dizziness and fainting upon standing up. Cerebral Salt Wasting Syndrome was indicated by the intense salt cravings and Beriberi was confirmed with my positive reaction to thiamine treatment. The hypersomnia, since it has improved, appears to be caused by thiamine deficiency as well. Hashimoto’s disease, to which I have a genetic predisposition, was part of the mess and I have since learned that it is very common post medication or vaccine. It is of course possible, according to Dr. Lonsdale, that a latent, asymptomatic thiamine deficiency was triggered into clinical significance by the Gardasil vaccination.
Healing Post Gardasil
Since the ‘paradox’ passed early December 2013, with the TTFD treatment, I have had more energy than I have had in five years. The constant dizziness is gone. My extreme salt cravings are gone. My skin has improved. Light and noise sensitivity both have diminished. I have been able to put on weight. I do not need sunglasses when driving at night or earplugs in noisy environments anymore.
Going forward, I am giving my body what it needs to heal. Gradually, we are titrating my hypersomnia medications downward while providing my body with critical nutrients to feed the mitochondria. Currently – in addition to crucial daily exercise – my strategy is the following per day:
- Early morning: probiotics; 200mg Modiodal; 93.25 thyroxine
- Mid-morning: 50mg TTFD (Allithiamine, Ecological Formulas); 150mg Magnesium (works with TTFD); 1000 iu vit D3 (to counter vit D deficiency)
- Lunch: 200mg or 175mg Modiodal
- Mid-afternoon: 500mg Acetyl L-Carnitine; 150mg Co-Enzyme Q10
- Night: 66mg TTFD, 1000µg B12, 66mg B6, 69mg vit.E, 66mg dl-α-as tocopheryl succinate, 20mg pantothenic acid calcium, 6.6mg γ-Oryzanol (2 pills of EX-PLUS Alinamin, Takeda Pharmaceuticals)
Note that initially between November 2013 and February 2014, I was on only 50mg of TTFD and 150mg of magnesium, plus a multivitamin. Now beyond the paradoxical phase, with the TTFD supplements my energy levels have soared. I decided to gradually increase the TTFD to 83mg. I am now at 116mg. Since my ailment seems to point to the mitochondria, I decided early March 2014 to add Acetyl L-Carnitine and Co-enzyme Q10. I also added probiotics to counter damage from ongoing medication. I now seek to decrease the Modiodal levels, gradually.
Post Script: I Was Given the Key to my Health at the Monastery
During the worst of my illness, a key was given to me in the form of both a pair and a trio. The trio was Dr. Chandler Marrs, Dr. Derrick Lonsdale, and the mother of Gardasil-injured patient. And the trio was paired with a context conducive to finding answers. Let me explain what I mean by the context.
I was in the last leg of my Ph.D. in France. During this challenging time physically, mentally and intellectually, but also financially, I was offered refuge in a monastery. My health was severely degrading. It was in this context of prayer, under the protection of this religious community while finishing my Ph.D. dissertation and preparing my Ph.D. defense, with a fantastic Wi-Fi connection at the monastery, that I began searching furiously for answers.
I needed to understand this complex biochemical mess that was manifesting in my body. What doctors were consistently discarding could not be this complicated to understand. The symptoms of this syndrome were not psychogenic: they did not occur in a chemical vacuum. Yet my doctors were baffled. And they were discarding my symptoms as an unsolvable mystery in not just one country, but in three countries: Australia, France and the United States.
Research on adverse reactions to Gardasil, as presented on Hormones Matter changed my perspective of this illness. A growing body of evidence seemed to indicate a link between Gardasil and a set of side effects ranging from Postural Hypotension Tachycardia Syndrome (POTS) to cerebellar ataxia, autoimmune disease and debilitating somnolence.
After countless GPs, I was referred to three in-hospital specialists to treat multiple conditions: a sleep specialist, an endocrinologist and an immunologist.
It turns out that the Gardasil vaccine-induced hypersomnia and vaccine-triggered Hashimoto’s was just the tip of the iceberg. I also had Cerebral Salt Wasting Syndrome, Postural Orthostatic Tachycardia Syndrome and Beriberi, all forms of dysautonomia, all potentially related to thiamine deficiency. None of this was detected or even considered by the physicians I sought help from, barring the dermatologist doctor #8 who mentioned the B vitamins as potentially involved in my illness. Even if the doctors had considered thiamine deficiency, testing in commercial labs was insufficient to detect it, leaving patients like me to fend for ourselves.
Through Hormones Matter, Dr. Chandler Marrs’ research and writing has helped me to connect the dots for my post Gardasil ordeal. Along with Dr. Derrick Lonsdale’s work showing the array of symptoms caused by thiamine deficiency, I now have a more accurate diagnosis and the treatment needed to heal. Together, Dr. Lonsdale’s research and Dr. Marrs’ articles on mitochondrial injury, are the closest I have come to a well-rounded explanation for the complex range of symptoms that I experienced over the last five years. Their work is giving me and my physicians treatment options that were otherwise unknown.
A few days ago, I discovered the work of Dr. François-Jérôme Authier and Dr. Romain K. Gherardi. Their work unveils even more of the complex chemical interactions at the core of this multifaceted syndrome.
What I Learned
Complex diseases sometimes have simple solutions, but to get there requires communication and collaboration amongst patients, doctors and researchers. My illness crossed medical boundaries requiring a multidisciplinary approach. There were no immediately knowable diagnoses, no medications that could effectively treat what was ailing me and, because of which, many physicians disregarded my symptoms as unsolvable, and the worst of them – thankfully a limited number – attributed my illness to psychogenic manifestations. If it were not for the online publication Hormones Matter, where patients, researchers and physicians work to find solutions to complex diseases and reactions, I would not be writing this post. I would be too ill.
A Note of Gratitude
I am profoundly grateful to the eclectic, geographically dispersed medical team which has helped me make sense of my ordeal. I am particularly grateful to Dr. Chandler Marrs for her out-of-the-ordinary patience and dedication to research and understanding adverse reactions, for making sure patients with complex diseases are heard. I am very grateful to Dr. Derrick Lonsdale for both his wisdom and his generosity in sharing, at 88 years old, his depth of knowledge on thiamine. May this knowledge be put to good use. His research legacy is a powerful one. I am grateful to Doctor #15 for being attentive and considering the possibility of a link between thiamine deficiency and some sleep disorders; to Doctor #17 for being willing to listen to a patient and to try the TTFD treatment; and to Doctor #21 for activating medical research networks both in Japan and France to seek to help me out. I am making sure that Doctors #15 in Australia and #9 in the US are in touch regarding the impact TTFD has had on the hypersomnia in my case.
Dear Ms. Chow,
Thank you for sharing your story. My daughter also suffers from a similar injury. I hope that you will do a follow-up to your story.
The only things that appear to help are Modafinil and Alani Nu.
Thank you for sharing your story. I’m so sorry you have had to go through this. I realize your article is a few years old, but I’m wondering how you are doing now, and if in the end you got down to the root and are better.
Four you, and anybody else going through this- hove you been tested for celiac disease? This could explain all your symptoms and doesn’t always show up with a blood test. The hashimotos, the sleep issues, dizziness, b vitamin deficiency, thiamine deficiency, etc. Could easily be caused/explained by celiac. At the very least- something to rule out.
All the best, good luck.
Hey, my wife is suffering severely since receiving the gardasil vaccine. From reading i understand that girls/boys develop a thiamine deficiency because of the yeast in the vaccine. My question is, is there a possible link to prions and/or prion disease since prions and yeast are related? A lot of people effected by gardasil seem to have a lot of the same symptoms as CJD which is a prion disease. I was just wondering if it could be a more mild/modified/mutated for of prion disease. Thank you all for any feedback!!!!
Ms Chow, let me express how sorry I am to hear of your Gardasil situation. I was/am in a similar predicament. I was a healthy 34 year old critical care RN, when life as I knew it, ceased to exist in 2002, due to unpublished mitochondrial effects of Lipitor. My illness led me to a 28 day hospital stay, with symptoms being akin to a 98 year old man with advanced Alzheimer’s disease. I did not know my wife of 3 year, nor my 3 year old son, nor my parents, siblings, friends and family who came to visit. I was unable to feed myself, unable to walk, I wet and soiled myself daily. I had dozens of lesions on my brain MRI, and a Biopsy was consistent with Neuronal Apoptosis (Programmed brain cell death). Electron microscopy revealed Mitochondrial anomalies most similar to that of Mitochondrial Encephalomyopathy with Lactic Acidosis and Stroke Like Episodes (MELAS). I was headed to a nursing home to live out the rest of my life. It wasn’t until I was evaluated by a visiting professor from Harvard, who suggested a Mitochondrial Cocktail for me. When after 36 hours on this cocktail, Including CoQ10, Acetyl L Carnitine, B Vitamins, when my alzheimers like state began to improve, as I was now able to speak coherently, answer simple questions, communicate basic needs (use bathroom etc) and I was discharged with a diagnosis of Viral Encephalitis. It wasnt until 1 month or so after discharge, when my wife and I saw Dr Beatrice Golomb interviewed and discussing her Statin Effects Study at the UCSD. I enrolled in this study, and when it had concluded, I received a phone call from Dr Golomb, who informed me that I was one of several similar cases, and she referred our cases to Mitochondrial Expert, Dr Doug Wallace of the University of California, Irvine, who opined that it was my use of Lipitor that was the likely causal contributor to the Mitochondrial Anomalies as well as the Apoptosis seen on the biopsy. It has been HELL trying to find any local physician who will even consider the notion, that statins can cause problems. Its almost as if they forget the importance of the Mevalonate pathway, where statins block Acetyl Co A Reductase, which in turn blocks every subsequent molecules from being made. Dolichols, CoQ10, Steroid Hormones, Vit D, Testosterone etc etc etc. Anyway, I have poured myself into researching this for the past 12 years or so, and I now question just about everything I learned in nursing school as well as the 12 year career which I loved. Anyway, I just wanted to tell you, I am sorry for all you have had to endure, due to Gardisil. And thank you for sharing.
Hi, would just like to also confirm what you are saying there is a study that shows certain people are more susceptible to mitochondrial mutation caused by statins. I have been suffering from taking one, yes one, 40mg simvastatin I now have something akin, to POTS syndrome and dysautonomia, Im only 24, I took the simvastatin as I had fears my cholesterol was high. It has been an awful mistake. I get hot flashes into my foot, vertigo, muscle spasms, blood pooling and ectopic beats aswell as exercise intolerence. I cant seem to get a doctor to listen it is appalling the lack of knowledge doctors seem to have on neurological conditions.
Hi Alexis – Thank you for getting in touch. I would be delighted to contact your Dr. Golomb and her research team. As I don’t have access to your email address, I am going to email her and address the email to you both. Feel free to contact on gabi.chow@nym.hush.com
Thanks Amy, I don’t use Facebook. However you are welcome to get in touch with me on gabi.chow@nym.hush.com
Thank you Dr. Lonsdale for the info on the potassium connection to this.
It would be good to find alternate labs where the erythrocyte test could be done since the King james lab is out of commission. Could Cornell’s vet science department be in a position to do advise ? It may be good to get in touch with the person who runs this:
http://www.ansci.cornell.edu/plants/toxicagents/thiaminase.html
Hi Gabriella,
Thank you so much for sharing your story. I work for a research group for Dr. Beatrice Golomb of UCSD’s Department of Medicine, and she told me she’s very interested in your case. She’s based most of her research on helping people with mitochondrial dysfunction (Gulf War Veterans, those adversely afflicted by statin and fluoroquinolone drugs). She’s asked me to get in touch with you because we’ve been contacted by another patient who had mitochondrial problems triggered by Gardasil. We would love to be in contact with you to help us learn more about medication-induced mitochondrial problems. Please let me know by email! Or you can contact Dr. Golomb directly, whose email and CV you can find here http://cnl.salk.edu/~bgolomb/
Thank you,
Alexis B
Gabriella: probably easier to communicate by FB. If you have FB, you can find me at Amy Celto Bellomy. Thanks 🙂
Unfortunately,King James lab is temporarily out of commission and I do not know of any alternative lab. The test used, completely erroneously, for thiamin deficiency is the blood level. A normal blood thiamine will not disprove thiamine deficiency. I have added a reference to a paper on two cases with low potassium levels due to alcoholic/vitamin deficiency abuse. It is all to do with cellular energy deficiency. There are “pumps” in cell membranes that pump potassium into the cell, a very important ion inside the cell. The “pumps” are dependent on energy and these two patients were deficient in B1, B6 and B12. Thus, an abnormal transketolase and a low serum potassium would prove vitamin B1 deficiency as a cause of the low potassium but would not exclude other deficiencies in their contribution to ENERGY deficiency.
Central pontine myelinolysis associated with low potassium levels in alcoholism.
Bähr M, Sommer N, Petersen D, Wiethölter H, Dichgans J. J Neurol. 1990 Jul;237(4):275-6.
Hello,
I’ve been asked by this site to share my story but am reluctant for a variety of reasons, namely my pending lawsuit through the vaccine injury program. In short I had the gardasil vaccine when I was 23 yrs old. 2 weeks post my 2nd shot I went back to my doctor complaining of hot flashes, nausea, etc and 2 weeks after that I was diagnosed with Premature Ovarian Failure – a disease so rare it only effects 1% of women. Oddly I had been pregnant the yr before I received gardasil so the POF was spontaneous and I believe directly linked to the vaccine. Like Gabby I too suffer from hypersomnia. It’s become so severe that I’ll sleep for well over 20 hours and sometimes fall into these coma like sleep states where nothing can wake me. I’m pretty sure I lose consciousness bc I never remember dreaming, when I finally wake I’m very confused, have bite marks on my tongue and cheek and am still exhausted with sever muscle aches. I’ve slept through work days and family events, throwing those who care for me into a frenzy looking for me. I live with a room mate but he travels a lot. He’s sometimes tries to wake me with no success so he’ll just leave me and periodically check my pulse to make sure I’m still alive. This used to happen 2-4 times a year but in the past 6 months I’ve had 4 episodes each lasting over 18 hours. I could be waking up and going back to sleep and then slip into these coma like states- I’m just not sure?
Dr lonsdale- have you ever heard of this? Do you think it’s worth me checking my thiamine levels? I’m desperate for help. I live in NYC and my family is very concerned. I’m finally at a point where I literally feel like I’m dying and I’m only 30 yrs old. On the outside you would never know but on the inside I feel like an 80 yr old woman :(. Please help.
Hi Amy
I can respond to your second question:
– if in the US, I heard that King James Medical Laboratory does provide the erythrocyte transketolase test for thiamin deficiency : (+1) 800 437 1404 ( Westlake, OH)
– if you are in another country, and if you want, let me know which country and I’ll support you with whatever I can to locate one local (keep in mind I couldn’t find one lab capable of running this test in australia, malaysia or japan.. frustrating.. but it doesn’t mean there aren’t any in other countries, we can look…)
– if you are not in the US and find no lab closer, the best would be to contact King James Medical Laboratory to find out if (and how) blood samples can be sent internationally
Then although Dr. Lonsdale explained to me how potassium levels are known to fluctuate with certain conditions – I prefer to invite him here to explain it. Derrick, can you please explain the link to low potassium levels with the conditions I’ve had?
And with regards to your diet + supplements that helped, I am so curious – can you tell me more about what you did and how it helped? I am trying to find out as much as possible to handle symptoms. And since we’ve had similar ones, I can learn from how your diet (and supplements) helped you particular situation.
Thanks Amy.
Thank you Dr. Marrs and Gabriella. To answer a question posed to me first: yes, I have improved. Time and an immaculate diet and targeted supps have helped. I am just 3 years out from the last poison pill of Levaquin. Thanks for asking.
A couple more questions:
1) How does the low potassium fit into all this?
2) Where can that special lab test for B1 deficiency be obtained? Does Quest Labs run it?
Thanks so much,
Amy
Gabriella’s story is an important one. Damage to mitochondria is usually conceived of being genetic in origin. If that damage is acquired by the use of a drug or a vaccine, further good scientific research is badly needed. There may be a special connection between thiamin and Gardasil since it is a yeast based vaccine. The special yeast that is used in its construction contains an enzyme that destroys thiamin. (FEMS Yeast Res. 2008 Mar;8(2):266-75. Epub 2007 Nov 19.
Involvement of thiaminase II encoded by the THI20 gene in thiamin salvage of Saccharomyces cerevisiae. Onozuka M1, Konno H, Kawasaki Y, Akaji K, Nosaka K.). It has also been shown by a researcher in Belgium that experimentally induced thiamin deficiency will damage the function of mitochondria. This damage can be reversed by providing the affected cells with thiamin. The erythrocyte transketolase test has been mentioned in previous posts on this web site as the only viable test for thiamin deficiency. It is relatively easy to set up and is badly needed in Medical Laboratories. POTS, now well associated with post Gardasil illness, Cerebral salt wasting syndrome and beriberi in its early stages are all forms of Dysautonomia. The phenomenon of paradox, so well described by Gabrielle, was well known in the early days of thiamin research. Since all research depends on climbing on the shoulders of others that have gone before, we have to keep in mind the importance of the early pioneers whose discoveries of vitamins change the face of medicine. I believe that the courage and tenacity of a mother with a Gardasil affected daughter that started this series of posts is to be congratulated and thanked. I am very grateful to Dr. Chandler Marrs, not only for this excellent web site, but also for the scientific education that I have received from her.
Thank you Lisa..! Moved by your comment.
And amdr, thanks, i’ll check it out. The term biohack is interesting. Please explain.
Amy: I am so sorry you endured this. I agree with Chandler’s response to your question. It’s an avenue that needs more research. Always an answer waiting around the next corner, we just need to persevere a little longer. Like long distance runners. Take your time but get there. These recoveries take years + perseverance. May I ask how you are doing now? Have any of your symptoms improved or are you still fighting with the worst of it? xx
Thank you so much for sharing your story, Gabriella! Your persistence is amazing and so admirable! Many people would have given up long before seeing 25 doctors. Your pursuit of real answers through the adversity you faced is incredible and you have my admiration for all that you put into getting your health back! In doggedly pursuing answers, and in telling your story, you have done something to help to change the situations of both people being hurt by Gardasil and doctors disregarding patients. I thank you very much and I wish you continued healing!
What a story! I wish you the best on your road to recovery. May I direct you to Dr Jack kruse @ http://www.jackkruse.com as well as his forum. He will do you a biohack that will make your head spin after 20+ drs. left you without answers.
Thank you, Gabriella, for the excellent article and I am glad that you are experiencing some healing at long last. Your symptoms sounds similar to mine which are the result of poisoning with the toxic Fluoroquinolone Antibiotics (cipro, avelox, levaquin, etc.). After being “floxed”, I too have experienced POTS, mito dysfunction, hypothyroidism, hypersomnia, CFS, etc. I also had unexplained hypokalemia (low potassium) as have many other “floxies”. Please explain where that fits in as you understand it.
Thanks so much,
Amy
Hi Amy, I thought I’d respond to your question. Since my work spans multiple medications and vaccines I can tell you that there are many similarities once the reaction reaches its systemic effect. It seems that the mitochondrial dysfunction is the key behind all of the conditions. It appears that if/when the mito dysfunction is treated, many of the symptoms abate or at least improve. Treating the mito dysfunction is dependent upon the root cause of the deficits within the mitochondria. It seems that thiamine is deficient, likely pre and post adverse reaction, worsening significantly post. In some conditions, like cyclic vomiting, it appears that the L-carnitine and the coQ10 are what is needed. Some 20 years ago Dr. Lonsdale anecdotally noted treating some post FQ reactions with thiamine. With the similarities in symptoms, it’s something I consider should be ruled out. Additionally, my rule-outs include Hashimoto’s, vitamin B12 deficiency and vitamin D deficiency. I am sure there are more, and as we learn more, I’ll post more. I should note also, the patient stories drive our research and help to connect the dots. They are case studies. If you would like to share your story with us on the blog, I am certain it will help other patients and it will help us learn more about the constellation of post reaction symptoms and diagnoses. There’s a write for us link in the right column of the page. Click it and it will take you to the contact information. Thank you for reading and sharing your thoughts.