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Medication and Vaccine Adverse Reactions and the Orexin – Hypocretin Neurons

Published on June 1, 2023

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A paper published in Science Translational Medicine, provides preliminary evidence that the H1N1 Flu Vaccine Pandemrix can evoke immune system mediated damage to the orexin – hypocretin neurons and induce narcolepsy in individuals with a particular genetic variant. The orexin – hypocretin neurons were only recently discovered in the mid 1990s, by two separate research groups, hence, the two names for the same molecule. For this paper, we’ll be utilizing the orexin nomenclature.

Initially, the orexin neurons were thought to be involved only in feeding behavior, as damage elicited hypophagia in animals. Soon it was learned that more severe damage to the orexin neurons induced narcolepsy and the orexin system became a key focus in narcolepsy related research. With time, however, it became quite clear that these neurons were involved in regulating a myriad of hormone and neurotransmitter systems and their consequent behaviors. Narcolepsy or rather the ability to sustain wakefulness, is but one of the many functions regulated by the orexin system.

In a previous paper, I touched briefly on the possibility that the orexin neurons might be damaged and have diminished functionality in individuals suffering from post Gardasil side effects. In particular, I suspected these neurons were indicated in post-Gardasil hypersomnia, a derivative of narcolepsy. That may be only the tip of the iceberg. As I soon learned, the hypocretin/orexin neurons are brain energy sensors and may be involved in array of post medication or vaccine adverse reactions. Indeed, they may be central to the ensuing state of sickness behaviors that emanate once an organism becomes overwhelmed.

The Orexin – Hypocretin Basics

Orexin nuclei are located in the lateral hypothalamus, the section of the hypothalamus that is most known for regulating feeding, arousal and motivation. The hypothalamus is the master regulator for all hormone systems and hormone related activity including feeding, sleeping, reproduction, fight, flight, energy usage – basically every aspect of human and animal survival. It sits at the interface between the central nervous system functioning and the endocrine system functioning.

From the lateral hypothalamus, orexin neurons project across the entire brain with its two receptors (OXA and OXB) differentially distributed throughout the central nervous system and even in the body, including in the kidney, adrenals, thyroid, testis, ovaries and small intestine. The orexin neurons also modulate local networks of adjacent neurons within the hypothalamus that in turn influence a myriad of behaviors.

The most densely innervated brain regions include the thalamus, the locus coeruleus, dorsal raphe nucleus, accounting for the hormone’s role in arousal, feeding and energy management. At the most basic level, release of the orexin induces wakefulness. When orexin neurons are turned on and firing appropriately, arousal is maintained. When orexin neurons are turned off, diminished or dysfunctional, melatonin, the sleep promoting hormone, is turned on. The two work in concert to manage wakefulness and sleep.

Orexin receptors are also located in the amygdala, the ventral tegmental area (VTA) and throughout the limbic system, accounting for its role in emotion and the reward system. Orexin directly activates dopamine in the VTA. The VTA is the reward, addiction, and in many ways, the pleasure center of the brain. All drugs of addiction, all pleasurable activities, activate dopamine in the VTA. Through the release of dopamine, here and elsewhere, orexin modulates the motivation to sustain pleasurable activities. When orexin is diminished, not only does dopamine diminish, but the motivation to sustain behaviors decreases and dysphoria increases.

That’s not all. Orexin influences the release of many other neurotransmitters and hormones, several of which are co-located on the orexin neurons themselves. For example, the neuropeptide dynorphin is co-located on orexin neurons. Dynorphin is an endogenous opioid involved in the perception of pain and analgesia. It has dual actions that can both elicit analgesia or pain depending upon dose and length of exposure. Stress activates dynorphin. Dynorphin then inhibits orexin firing by as much as 50%. Illness is a stressor, a vaccine is a stressor, either could activate dynorphin and inhibit orexin. After the initial activation of dynorphin, and the ensuing decrease in orexin, the presence of chronic stressors and chronic pain could begin a continuous feedback loop of diminished arousal, and increasing pain.

Other Neurochemical Connections

Consistent with orexin’s role in arousal, orexin neurons contain glutamate vesicles. Glutamate is the brain’s primary excitatory neurotransmitter. Drugs that increase glutamate, also increase orexin. Drugs that block glutamate, via its NMDA receptor, decrease orexin. Common migraine medications block glutamate and thereby may also diminish orexin.
Serotonin and norepinephrine decrease hypocretin/orexin firing (suggesting if one is concerned with hypersomnia, anti-depressants might not be a good option).
As one might expect, orexin neurons are inhibited by GABAα agonists – sedatives. From a women’s health perspective, consider that cycling hormones would also affect orexin neurons through the GABAα pathway. Progesterone is a GABAα agonist – a sedative, while DHEA and its sulfated partner DHEAS are GABAα antagonists, anxiolytics that block GABAα, reduce sedation, and thereby increase anxiety and wakefulness. There may be a cyclical nature to orexin firing that has yet to be investigated.
The hypocretin/orexin neurons also influence galanin, a GI and CNS hormone that seems to inhibit the activity of a variety of other neurons in those regions.

These are but a few of the brain systems that the orexin neurons touch in some way or another. Damage to this system would have serious health consequences by initiating a cascade of biochemical changes within the brain and body. Many of which, we have yet to fully understand.

How Might the Orexin Neurons Become Inhibited?

Quite easily, apparently. In addition to the orexin’s vast interconnected pathways with a myriad of neurotransmitters and neuropeptides, the orexin neurons act as energy and activity sensors with some unique intracellular mechanics that make them especially sensitive to the changing dynamics of the extracellular milieu. Disruptions in ATP, glucose and temperature, elicit reactions in orexin functioning.

Orexin neurons require as much as 5-6X the amount of intracellular ATP to maintain firing, and to maintain a state of wakefulness or arousal. This extreme sensitivity to reduced ATP makes the orexin neurons uniquely positioned to sense and monitor brain energy resources, early, before ATP levels become critical in other areas of the brain. The orexin neurons cease firing when ATP stores become low, thereby allowing the reallocation energy, perhaps to those cells required for survival, breathing and heart rate. As Hans Selye observed many decades ago, one of the first, and indeed, most consistent of the sickness behaviors, no matter the disease, is lethargy, fatigue and sleepiness. Orexin is at the center of this behavior.

Orexin neurons react to extracellular glucose levels, though perhaps not as one might expect. When extracellular glucose levels are high, orexin neurons stop firing via what is called an inward rectifying potassium (K+) channel that is ATP dependent. That means that when extracellular glucose is high, intracellular ATP is allocated to open K+ channels and flood the cell with the inhibitory K+ ions. K+ hyperpolarizes the cell, prohibiting it from firing. This mechanism reminds me of Dr. Peter Attia’s talk about the nature of Type 2 Diabetes and our approach to treatment. He proposes that the body’s metabolic response – the conservation of energy – to Type 2 Diabetes is not something aberrant but is exactly as it should be with a disease state. We’re just not treating the correct disease state.

Another way we can shut down the orexin neurons is via increased temperature. The orexin neurons are very sensitive thermosensors. Increased temperatures shut down orexin firing via the inward K+ flow. Again, this is consistent with sickness behaviors and the reallocation of resources.

Orexin – Hypocretin Neurons in Migraine and Seizures

Diminished orexin has been linked to migraine and seizure activity. With migraines specifically, orexin may contribute to the early warning, hours to days, of impending cortical disruption via changes in feeding and sleep patterns that often precede migraine onset. Orexin may also be linked to the pre-migraine aura mediated by changes in brain electrical activity that prelude the migraine pain itself by minutes, called cortical spreading depression or more appropriately, cortical spreading depolarization – the massive spreading change in ion balance of the neurons. Initially the wave is excitatory, neurons are firing, but that is soon followed by a period of neural silence. Finally, orexin is also connected to the vasodilation of the trigeminal nerve, the nerve responsible for migraine pain. These findings have led some to call orexin a migraine generator.

Diminished cerebral spinal concentrations of oxerin have been found in patients generalized tonic-clonic seizures. Conversely, in rodent studies, injections of orexin elicit seizure activity. Despite the somewhat contradictory findings in seizure activity versus migraine activity, it is likely that the orexin system is involved both disease processes.

Pulling it all Together: Orexins Monitor and Mark Disruptions in Brain Homeostasis

Here’s where it gets really interesting. Although some have argued orexin, particularly diminished orexin functioning, is the cause and culprit of disruptions in brain homeostasis, leading to narcolepsy, excessive sleepiness, migraine, seizures and other diseases, I think this system represents merely a marker of a disease process. I think the orexin system is the stopgap, the final barrier of disrupted cellular energetics, of mitochondrial function. Mitochondrial ATP is the key.

When we consider orexin’s role in migraine, in particular, we see clearly how environmental changes (diet, stress, illness, medication/toxin exposure) can lead to changes in the extracellular milieu where orexins reside. The orexin sensors adjust to these changes, mostly by reducing neural firing in attempt to counteract damages. The reduction in orexin then elicits the premonitory phases of the impending brain disruptions, sleep and hypophagia – the sickness behaviors. If it progresses, the massive waves of electrical disruption ensue, and migraine, perhaps even seizures are evoked. When the extracellular environment become chronically disrupted, so too does the diminishment of orexin activity, thereby initiating a perpetuating loop of dysregulated brain activity. We can hypothesize that similar progressions exist with disease processes marked by aberrant electrical activity, such as epilepsy.

We know that mitochondrial dysfunction is often generated by genetic polymorphisms and can predispose individuals to an array of seemingly unrelated conditions like migraine and fibromyalgia, dysautonomias and cognitive deficits. At the root of the dysfunction is a error of some sort in mitochondrial energy processing – ATP.

What has become increasingly clear, is that the production of cellular energy, can be disrupted environmentally, by diet, illness and exposures, if co-factors necessary for the production ATP like thiamine are diminished. It is via diminished ATP production, that I think some medications and vaccines evoke adverse reactions in some individuals. The orexin system, because it is so exquisitely sensitive to changes in cellular energy, is our warning system; first by subtle changes in neurochemistry, then by changes in arousal and feeding behavior, and finally, by an all-out reallocation of resources – excessive sleeping. If ATP remains deficient chronically, and an individual is so disposed, then the cortical misfiring we see in migraine and seizure ensues, along with autonomic dysregulation and the syndromes associated therewith. It is not the orexin – hypocretin system that is at root of many of these diseases, but rather, the causes are deeper yet and reside with mitochondrial health.

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This article was published originally on January 29, 2014.

The Flu Vaccine, Molecular Mimicry, Narcolepsy: Clues to Gardasil Injury

by Chandler Marrs, PhD

Published on November 18, 2015

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What do molecular mimicry, the H1N1 Flu vaccine and the HPV vaccines Gardasil or Cervarix have to do with the brain neurons involved in narcolepsy or hypersomnia? Plenty. Researchers are learning that vaccine induced immune reactions can destroy innate cells via molecular mimicry and in the case of the flu vaccine, the hypocretin/orexin neurons responsible for maintaining wakefulness are attacked. Idiopathic hypersomnia, a derivative of narcolepsy is one of the many side effects reported by post Gardasil girls and women. Could the HPV vaccine be attacking those same neurons? Is molecular mimicry at play in the HPV vaccine too? The answers are yes and possibly, but with the HPV vaccine, the molecular mimicry is more widespread and the research only beginning to delineate its effects.

What is Molecular Mimicry?

Molecular mimicry is the notion that foreign pathogens like bacteria, viruses and vaccines can be so similar in structure or function to innate, ‘self’ peptide sequences that they evoke an autoimmune response in the exposed individual. Molecular mimics are thought to be involved in the onset of Type 1 Diabetes, Lupus, Multiple Sclerosis and other diseases, including some neurological disease processes.

Molecular mimics are snippets of protein code embedded within the pathogen that are either functionally similar and contain sequences of identical code to those found innately in humans, or structurally similar and because of their shape can bind to and activate an immune cell receptor. The protein codes, called motifs, are instructions that govern all aspects of the cell’s activity levels, and indeed, our very health and survival. Some codes tell the cell to live and how to function, others tell the cell to die and even how to die. The thought is that when external pathogens contain protein motifs that mimic internal and innate protein motifs, our immune system recognizes the foreign invader and attacks not only the dangerous pathogen, but the innate molecules that contain those same protein motifs too, evoking all sorts of damage to potentially many different tissues and organs. When there is structural similarity between the pathogen and immune cells, the process for immune activation is quite easy. The pathogen slips in, binds to a receptor and initiates the inflammatory immune response. In either case, the immune response to the environmental pathogen results in a disease process identified as autoimmune – the immune system attacking itself. It should be noted that connection between molecular mimicry and autoimmune disease onset is hotly debated.

Narcolepsy or Hypersomnia, the Immune System and the Flu Vaccine

In 2010, amidst the fears of the H1N1 swine flu pandemic, citizens in Scandinavia and Europe were given the adjuvanted (MF-59 a squalene based adjuvant plus ASO3 – squalene-α-tocopherol mix) flu vaccine called Pandemrix. Shortly thereafter physicians began noting an increase in new onset cases of narcolepsy, especially in Scandinavian children.

Narcolepsy is the lifelong disorder characterized by excessive sleepiness with abrupt and sudden transitions to REM sleep. It affects approximately ~ 1 in every 3000 individuals worldwide. Individuals with narcolepsy/hypersomnia have sudden and very strong urges to sleep throughout the day, though at night insomnia may develop. Patients may fall asleep as many as 20-30 times per day, for brief periods, making regular functioning difficult without wake stimulating medications.

Often co-occurring with narcolepsy is a condition called cataplexy. Cataplexy denotes the muscle tone and behavioral changes that precede the narcoleptic sleep incident. Cataplexy symptoms can range from the barely perceptible loss of facial muscle tone or twitches to full muscle paralysis and collapse. Approximately 70% of patients with narcolepsy also have cataplexy.

Hypersomnia, or more specifically, idiopathic hypersomnia, is a central nervous system disorder similar to narcolepsy. Like with narcolepsy, the brain is unable to regulate sleep-wake cycles, only here instead of bouts of uncontrollable sleepiness and periods of sudden onset sleep, with idiopathic hypersomnia, the sleepiness is severe, excessive and continuous. Both narcolepsy and idiopathic hypersomnia have long been thought to be autoimmune in nature, triggered by environmental factors. Bacterial infections such as streptococcus pyogenes, the bacteria responsible for strep throat/pharyngitis and skin infections like impetigo can elicit narcolepsy in some individuals, as well as autoimmune rheumatic fever and kidney disease in others.

Hypocretin/Orexin Neurons Damaged in Patients with Narcolepsy/Hypersomnia

From an autoimmune standpoint, key to triggering narcolepsy in some individuals, is presence of a particular gene variant in immune cells called human leukocyte antigens (HLA). The variant is labeled HLA -DQB1*0602. Fully 98% of patients with narcolepsy exhibit the DQ0602 haplotype (DQA1*0102/DQB1*0602) versus 18-25% of the general public who have the mutation but do not experience narcolepsy. DQ0602 impairs and often destroys the brain neurons that secrete a peptide hormone that is required to maintain wakefulness. The wake-promoting hormone released from the hypothalamus, is called orexin or hypocretin. Orexin and hypocretin are the same molecule that was discovered simultaneously by two separate research groups and then named independently. Readers will see research articles on both orexin and hypocretin linked to narcolepsy (and the flu vaccine, migraine, glucose metabolism, feeding behavior, to name but a few other areas of research).

Molecular Mimics in the Flu Vaccine Attack Hypocretin Neurons and Induce Narcolepsy

Researchers from Stanford found molecular mimics in the adjuvanted Flu vaccine, Pandemrix, both sequence code and structural similarities that initiated immune system attacks on the hypocretin/orexin system in narcolepsy patients but not healthy controls. It should be noted in this particular study, only the adjuvanted version of the flu vaccine was studied, as that was the product distributed in Europe and Scandinavia. The non-adjuvanted version of the Flu vaccine sold in the US was not tested.

For the present study: CD4+T Cell Autoimmunity to Hypocretin/Orexin and Cross-Reactivity to a 2009 H1N1 Influenza A Epitope in Narcolepsy, the researchers used confirmed narcolepsy patients and controls who were all positive for the DQB1*0602 gene variant associated with narcolepsy. Here, despite having the variant, only the patients had a reactivation of the immune attack on the hypocretin neurons. The control group, who were also positive for the variant, but who had no active symptoms or diagnoses of narcolepsy, did not demonstrate the same immune response. This suggests that other factors in addition to the molecular mimics and a personal predisposition must align to initiate the immune response or, in this case, what is deemed the autoimmune response. It also suggests, that in predisposed individuals, vaccine introduced molecular mimics can trigger immune system attacks and initiate disease states that may or may not have been symptomatic pre-exposure.

What this research does not explain is whether the new onset cases observed in the Scandinavian population post vaccine exposure were solely in individuals with the pre-disposing genetic variant. Was the increase in narcolepsy post flu vaccine exposure indicative of a latent disease state simply triggered by the vaccine? Or is it possible that there are other molecular mimics embedded within the flu vaccine, not yet identified, that might also trigger narcolepsy? Finally, and most importantly, could there be additional factors native to this and other vaccines, to the individual, or with the combination thereof, that evoke an attack on the neurons responsible for regulating wakefulness and inducing narcolepsy, or evoke an attack on other cells and elicit different disease processes? If the answer is yes to any of these questions, then our approach to vaccines ought to be rethought.

Molecular Mimicry and the HPV Vaccines Gardasil and Cervarix

Here is where it gets interesting for those interested in post Gardasil injury. The flu study, as limited and focused as it was, provides important clues to how and why the HPV vaccine might also induce an array of side effects, including, but not limited, to hypersomnia in some individuals but not in others.

Researchers have begun investigating molecular mimics in the HPV vaccines Gardasil and Cervarix. Thus far, they have identified 82 pentamer (5) level mimics and 34 heptamer (7) level mimics in the HPV 16L component. The offending motifs control a variety of cell behaviors related to cardiac functioning, cell permeability and cell death. An immune system attack on any of these motifs could elicit serious illness. Indeed, the researcher postulates that the mimicked motifs controlling cardiac functioning could be culprits in the post HPV vaccine incidences of sudden death.

To my knowledge, the full HPV vaccine to human proteome has not been mapped and so how or if there are mimicked protein motifs within the HPV vaccine that are capable of attacking the hypocretin/orexin neurons is not known. Nevertheless, idiopathic hypersomnia, a derivative of narcolepsy, is one of the core symptoms of post Gardasil injury, though it is sometimes misdiagnosed and mischaracterized as excessive fatigue and sleepiness. Additionally, a number of other symptoms post Gardasil are influenced by the hypocretin/orexin system, including feeding behavior, gastroparesis (perhaps via galanin) migraine, and all over pain (via dynorphin) – more on this in subsequent posts. Since we now know that molecular mimics can evoke reactions, it is only a matter of time before researchers match the vaccine protein motifs and structural homologies to individual gene variants, environmental predispositions and the clinical symptoms/syndromes that develop.

Perhaps even more interesting, when we dig into the hypocretin/orexin system we see that the neurons are especially susceptible to changes in ATP. Intracellular ATP in hypocretin/orexin neurons must be maintained at much higher levels than in other cells. Diminished ATP stores inhibits hypocretin/orexin firing and thereby reduces sustained wakefulness. We know from other research and patient reports that severe thiamine deficiencies are present in post Gardasil injury (whether the deficiencies existed pre-Gardasil, but were asymptomatic is not clear). Thiamine is a required co-factor in the production of ATP. Reduced thiamine would impair functioning in the hypocretin/orexin neurons and induce the hypersomina and hypophagia and many of the other symptoms we see post vaccine.

In subsequent papers, I will explore the myriad functions the hypocretin/orexin neurons regulate and how damage to those neurons, either directly as indicated in the flu vaccine study, or indirectly, via targeting critical co-factors provides clues to the constellation of post Gardasil injuries. Additionally, I will address the molecular mimicry debate and how it will reshape the framework for understanding autoimmunity.

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Recovering from the Gardasil Vaccine: A Long and Complicated Process

by Charlotte Nielsen

Published on September 16, 2015

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My daughter Sara was almost 13 when she became ill after two inoculations of the Gardasil HPV vaccine. Read her story: The Gardasil Experience in Denmark. Much has happened since then in Denmark as well globally concerning the HPV vaccine issue. Sara turned 15 when over two years of severe illness had passed. She has slowly achieved some recovery from more than 30 symptoms including a walking disability and severe brain fog.

This is an update on the continuing struggle toward Sara’s recovery. Like many families, we have had to navigate in areas of medicine, where there were no experts to guide us. Thanks to networking, it has been possible to find highly skilled doctors, using a variety of methods from both orthodox and complementary medicine, to help treat Sara.

As families of Gardasil-injured girls we have had fights with our respective governments to recognize the illnesses that were born from this vaccine. In Denmark and Japan, the battles we fought have begun to bear some success. Researchers are uncovering new connections, and medical institutions are beginning to recognize the post Gardasil health issues. We are making progress, but there is still much to do.

Gaining Recognition for Gardasil Injuries: Denmark and Japan

For thousands of patients and families, in over 50 countries, recovering from post Gardasil illnesses has been an ongoing struggle. It has been difficult for the patients and their families to get the medical care needed. There is still very little research on post-Gardasil injuries. There are no tests available to diagnose the illnesses and injuries that develop post vaccine, and there are no recognized treatments for these patients within established health care systems. In fact, for the most part, these symptoms are all-but-ignored by most practitioners.

However, the activism and networking of many families has led to some positive outcomes in recognition. For example, a Japanese TV company made contact and visited our home in December 2014. Soon after a documentary about the Danish HPV situation aired in Japan 12th January 2015. Sara was the main case. Danish doctors met with the Japanese Prof. Kusuki Nishioka, MD, PhD, director of Institute of Medical Science, Tokyo Medical University, who specializes in rheumatic diseases and fibromyalgia. Dr. Nishioka has been a leading voice in Japan against the HPV vaccine. The meeting (featured at 9:50) concluded with a recognition of clear similarities between the symptoms of Japanese and Danish patients.

In Denmark, over the last two years, there has been a growing public wake up with stories in the newspapers, on TV and social media. The interest among politicians, authorities and doctors increased. This has probably been a contributing factor in the growing number of patients reporting side effects. According to the latest update (September 2015) from a database of the Danish Health and Medicines Authority, of the over 500,000 young girls and women who received the vaccine, there have been:

1806 reports of adverse reactions (each person could have up to over 30 symptoms)
374 reports (out of 1386) per News on Side effects per have been classified ‘severe’ from 2006 and up through April 2015.

I should note that the Danish Board of Health failed to report an additional 81 adverse reactions that occurred prior to the vaccine’s introduction into children’s vaccine program in 2009; 11 of these 81 cases were classified serious. The latest update of the database can be viewed here: Danish reports of Gardasil adverse reactions.

In Denmark, the reporting of adverse reactions has increased by about 100 new cases every month since April. Still more families realize how their daughter’s symptoms look similar to obvious patterns presented. A thread is running through all these cases stories of severe side effects, as a Danish leading hospital doctor and researcher stated on TV (1:30).

Gardasil, POTS and CRP: New Research on the HPV-Vaccine Induced Neurological Damage

A research team of doctors and medical staff at Coordinating research Centre/Syncope Unit, Frederiksberg Hospital, published three studies of patient groups with severe neurological symptoms including pain following shortly after HPV-vaccination.

Suspected side effects to the quadrivalent human papilloma vaccine.
Another study describes 21 cases with the diagnose POTS: Orthostatic intolerance and postural tachycardia syndrome as suspected adverse effects of vaccination against human papilloma virus.
The Danish findings have made EMA (European Medicines Agency) investigate into the HPV-vaccine, security and side effects by focusing on POTS (Postural Orthostatic Tachycardia Syndrome) and CRPS (Complex Regional Pain Syndrome). The EMA report is expected to be finished by May 2016.
Danish and Japanese health authorities are keeping contact as well. Danish Health and Medicines Authorities with the help of a pediatrician are reviewing all adverse drug reports in Denmark focusing patterns of symptoms rather than diagnoses.
A Danish TV documentary in March this year presented three case stories. Over fifty young girls participated anonymously in the report simply by silent presence, all making a great impact. The report presented interviews by Danish and British physicians. A Danish professor of molecular medicine comments about the remarkable test results of a young patient after intravenous infusions of phosphoplipids, performed in England (21:20).

Increased Media Coverage, Increased Side Effect Recognition

After the Danish TV report aired, a veritable telephone storm began the very next morning with post Gardasil patients wanting referrals to Frederiksberg Hospital. Until then, the Syncope Unit had examined about 80-90 patients with HPV-vaccine side effects. After the TV documentary, the number of patients grew to 350, increased to 525 referrals by August, and now there is a huge waiting list.

At the same time, Health Care Council of Danish Regions announced the establishment of five centers (one for each Region in Denmark), opening June 1, of this year. These centers were established to treat patients with suspected side effects from the HPV-vaccine. Frederiksberg Hospital Syncope Unit, situated in Copenhagen, as a research Center for natural reasons remained center of the Capital Region. Over 1100 patients are referred to the five Regions by now.

The problem is, in spite of waiting lists, the four other centers have no experience and no present research to help clarify these symptoms in patients without a diagnosis. The knowledge and qualifications of staff behind these doors remain lacking because of the paucity of research on Gardasil side effects. Unfortunately, still some patients are met by an attitude of arrogance. Most physicians have no idea what to look for in these HPV injuries.

At the Frederiksberg Syncope Unit the research team doctors have some ideas, though. While continuing to work with new patients, the unit’s physicians are diagnosing many cases of POTS (by tilt bearing test). By September this year, 62 reported cases have been diagnosed POTS after the Gardasil, HPV vaccination in Denmark. Symptoms are mainly neurological and sometimes resemble or include those of Myalgic Encephalomyelitis (ME). Several of the patients after receiving the Gardasil HPV vaccine examined at Frederiksberg Hospital could be diagnosed ME, according to the research team´s third study this year: Is Chronic Fatigue Syndrome/Myalgic Encephalomyelitis a Relevant Diagnosis in Patients with Suspected Side Effects to Human Papilloma Virus Vaccine?

POTS, ME and Mitochondria

POTS is a well known comorbidity to ME according to the research. It is also connected to mitochondrial dysfunction. An emerging theory is that Gardasil damages nerve cells and induces mitochondrial degeneration. This then leads to conditions of energy loss with neurological symptoms. An increasing number of international studies on Gardasil and Cervarix have been published over the last few years. Case studies such as CNS demyelination following HPV vaccination have been described. Research teams and doctors in Denmark, Israel and Japan etc. are looking into correlation by studying autoimmunity and possible markers. When analyzing symptoms a pattern emerges between this vaccine and many severe injuries. Strong connections have been presented in Death after Quadrivalent Human Papillomavirus (HPV) Vaccination: Causal or Coincidental?

More recently, six cases of POTS were described and published. Another case study presents a 14 year old girl with POTS and Chronic Fatigue Syndrome after the Gardasil vaccine. Last year a Japanese study included 40 cases, the main part with symptoms identical to CRPS, and four cases were even diagnosed POTS. Prof. Yehuda Shoenfeld and his team recently published a study on Safety of Human Papilloma Virus-Blockers and the Risk of Triggering Autoimmune Diseases. The authors conclude, after a review of U.S. VAERS reports, though the vaccine is stated as safe, there are many mechanisms by which autoimmunity is triggered by Gardasil vaccine adjuvants and viral proteins. They suggest that recombinant proteins from Gardasil are leading to an increased association with autoimmunity.

My daughter Sara experience the symptoms concordant with the major criteria of ASIA syndrome proposed by Prof. Shoenfeld. Her case was sent to the international ASIA registry last year. By now other Danish patient cases are being registered.

The Japanese doctor Kusuki Nishioka presented his work at an international congress of bio-rheumatology in Moscow July 2014. Nishioka’s work points to another post Gardasil Syndrome called HANS or Human Papillomavirus Associated Neuroimmunopathic Syndrome.

Sara’s Recovery from Gardasil Injury

Our daughter’s health history is an example of a likely temporal correlation between the Gardasil vaccine and a host of complicated post vaccine symptoms. Sara fainted two days after her second vaccination with Gardasil, March 2013. Right after this, all her neurological symptoms appeared, one after another. Children’s hospital performed several analyses including CT and MRI scans. The only blood test that came out positive was a very low vitamin D test (at 25). The only suggestion for treatment by children’s ward, was a powder medication for non-existing constipation that was postulated due to her abdominal pains. This medication was given despite the fact that her primary symptoms were neurological like tingling, burning and pain of legs and arms, dizziness, fatigue and a constant headache. A neurological examination seemed out of question and was rejected.

We realized that there was no treatment in Denmark for Sara and went to the Swiss clinic Paracelsus, Lustmühle. Back in Denmark, Sara was diagnosed POTS at Frederiksberg Hospital shortly after; although a doctor of social medicine at children’s hospital had claimed Sara could not suffer from any physical diseases and implied it was only some kind of bio-psycho-social disorder.

With the help of our Swiss doctor, Sara had several tests performed by foreign laboratories (German, Swiss, Belgium and British). Clear markers were found proving a dysfunction of her mitochondria, the “powerhouses” of the cells. Among signs of severe oxidative stress were low levels of coenzyme Q10, a key element in the energy production of the cells.

Severe toxic reaction to the vaccination with Gardasil, initiating fibromyalgia syndrome (FMS) with acquired mitochondriopathy, was the Swiss diagnosis. Sara’s muscle pains were correlating classic trigger points of FMS.
Similar symptoms and diagnoses have been proposed in two patients after post HPV vaccine, by Dr. Manuel Martínez-Lavín.

Sara’s treatment was planned from test results, by her Swiss doctor’s experience in pediatrics and diseases of energy loss like Fibromyalgia Syndrome. The doctors there had great competence and knowledge from other vaccine injuries. On several occasions, the doctor hit the nail on the head with tests which would guide treatment details. Sara slowly began to improve.

Abdominal pains recovered within the first few months. At our local children’s ward doctors did not manage to perform a test of Celiac disease, whilst the Swiss clinic found pathological bacteria like Klebsiella Pneumo and other problems of the gut, which needed treatment.

After the Gardasil vaccine, her skin and muscles were sensitive to any touch, she could hardly use a wash cloth for her face. Today a careful massage and deeper pressure of muscles can even be tolerated.

More common metabolic tests were later managed within the Danish system (by our GP), and several linked hormones were affected. Sara had TSH and T4/T3 measured at the very low/ under border. According to the Swiss doctor there is a clear cut connection. He theorizes, recombinant proteins from Gardasil lead to damage of the brain nerve cells, especially affecting the hypothalamus and hypophysis, running the production of hormones in the thyroid gland, the adrenals and the ovaries. Via the TSH-control the thyroid gland normally should produce sufficient levels of T4/T3. But TSH is low as the releasing hormone (TRH) from the damaged hypothalamus is low. TRH has a direct effect on the mitochondria, as a permanent “crosstalk” is going on.

Hormones Matter has published a number of articles on post-medication and vaccine thyroid injury.

Last winter Sara had a solution of homeopathic injections of her skin (sub cutane, D5 Hypophysis and Hypothalamus) four times a week, performed at home by her very brave dad, monitored by the Swiss doctor. New Danish test results are showing TSH and T4 increased to normal levels.

Her HPV related symptoms were worsened with menstrual related pains, increasing to unbearable levels. Though still quite painful today, they are closer to normal for her age.

Her temperature regulation problems have almost gone. Before she would freeze and need a woolen blanket when everybody else felt warm in front of the wood-burning stove, or she would feel too hot in chilly surroundings. Night sweats are history.

Along with the mentioned treatment Sara has been taking a huge number of additional natural supplements and medication. Her diet has been strictly controlled too, with only healthy, nutritional foods allowed per our wonderful Swiss nutritionist at the Paracelsus Clinic.

More than once, Glutathione was measured by test to be at the very low border, and it has been complicated so far to raise this to normal levels.

No doubt phospholipids (NT Factor ATP lipids powder) made a difference of mitochondrial function since the ATP, the energy for every cell, has increased markedly. Nevertheless, lab tests have proven there is still an inability to produce sufficient amounts of ATP, which explains her rapid fatigue and problems in concentrating over longer periods of time. We expect future tests to show even better results based on the very good improvements we have seen so far.

Correcting the Post Gardasil Thiamine Deficiency

Probably the most effective supplement lately has been Sara’s treatment for thiamine deficiency, advised by Dr. Lonsdale. Thiamine is Vitamin B1. This article, in particular, was very helpful: Thiamine and magnesium deficiencies: keys to disease.

We found a German laboratory, Ganz Immun Diagnostics, performing the test for Transketolase in red cells, and the TPP-effect which was 27,5% (normal range < 20%.). To Dr. Lonsdale, there was no doubt, Sara would need Allithiamine (TTFD, a bioavailable form of fat soluble Vitamin B1), plus magnesium potassium aspartate.

Sara went through a tough time over some weeks by a so called “vitamin therapy paradox“. Side effects occurred, she had to go down to half the dose to continue and simply cope with some unpleasant symptoms for a few weeks before going back on full dose. Sara came out better than she had been for a long time, with more energy, and slowly a clearer mind. So far, most of her previous main pains still remain to some degree, but the paradox-related side effects have gone.

Best of all her brain fog began to lift with the thiamine treatment. Learning has even become possible along with concentration and memory improving. She manages a limited number of lessons at home, and she remembers much better than earlier. Her new level of energy allows her slowly to participate in the activities she had not been able to do in the years since the vaccine injury. Still seeing friends takes her energy, and social life is limited. If she overdoes her activity, the bill arrives sometimes days later by exhaustion and deterioration.

Another important treatment has been to increase the level of SAM. S-Adenosyl Methionine (also SAMe) is an important compound of the body and plays a role in many important processes of the immune system including maintains cell membranes. Last summer Sara could only walk up to 300 meters in a very slow speed at pains, with burning feet and exhaustion. We used a wheel chair once to get her to an open air musical area. This really felt like a step in the wrong direction.

She was diagnosed toxic neuropathy (after Gardasil) by a Danish retired doctor. The Swiss doctor made sure we had SAM measured by a German laboratory. Within the first four weeks of treatment by Methyl Guard (Thorne, US, Veggie caps), Sara could walk much better. We even enjoyed her amazing first careful dancing steps for the first time within months.

Sara’s Health Today

Today Sara can walk distances at good days about 1.5 kilometers at a normal speed with small pauses; and she can bike even longer. Twitching legs and cramps have almost disappeared and very rarely occur after too much exertion.

Sara started horse riding therapy, which she simply loves. After some weeks her muscle power improved clearly, and she can now carry a horse saddle. Months ago she could hardly lift a glass of water. She is more independent in activities of daily living, though she still needs help to some degree. She can do things like baking pan cakes again.

While still improving, our hope is to find a way for Sara to recover from resisting pains and to achieve more energy over time. Remaining are still some sensory disturbances (tingling and the more rare burning sensations) and sensitivity to light. Her constant headache lasting over two years, muscle pains of legs/and partly of arms are still present, though once in a while less heavy and variations appear during day time. Still remains severe fatigue and often a delayed exhaustion, which are all typical ME-symptoms. Myalgic Encephalomyelitis is another diagnosis Sara probably will have to cope with.

Sara lost two important years of teenage life. She’ll have lots to catch up with in the future. She faces a great challenge with her education, as two school years have been lost so far. She will hopefully go back to some kind of school life in the future. Sara enjoys music and her classical song lessons. She has kept her hopes and dreams alive, and she can even benefit from her very hard experiences by Gardasil injury. The damage it did to her made her mature and wise beyond her age.

The Toll Gardasil Recovery Takes on the Family

As a family this has been a challenge; sometimes feeling like a never ending nightmare. We realized early, there was no established treatment for this condition, and perhaps luckily, we went abroad in time.

As a mom, I have to stay on top of everything and keep up my energy for activism, networking, and first of all for the care taking. Organizing blood samples is another job, plus catching up on results and writing regular status reports of symptoms and improvement. Ordering supplements is a task for her dad. Sara’s treatment has been counting over 25 different capsules, tablets, plus liquid remedies and drops, powders and injections.

No Danish physician has been able to take charge of Sara’s treatment. The Swiss doctor has been the main physician during the last two years. Our GP kindly assists in blood taking for German labs etc., something not many GPs would do.

The Swiss treatment was welcomed by three or four physicians here, who all have been supportive in Sara’s care. Foreign practitioners shared with us their knowledge and experience as well. For sure, the more consensus, the safer we feel.

Added to treatment, there are exhausting meetings with officials in accordance of planning Sara’s teaching and making sure her lessons are always adjusted to her present resources. We have clear laws on teaching ill pupils at home by local school.

As these post vaccine injury conditions are still not very well known, authorities do not always understand and respect patient’s decreased resources and special needs. Many young girls are trapped by now in the grey area, not able to cope with education or full time work, neither do we have social legislation to cover them appropriately.

There are no guarantees of a full recovery, though we still have our hopes and spirits. The pleasure and great relief of seeing Sara progress will never replace the tremendous pain and losses she has suffered, neither the price we payed as a family; not to mention financial costs.

Regarding connection the remaining dots of vaccine damages, rebuilding mitochondrial function is of great importance. By taking supplements of certain vitamins, minerals, phospholipids, fatty acids (omega-3 and -6 oils), antioxidants and amino acids, it is possible to facilitate a regeneration and maintenance of mitochondrial structure and cell metabolism. These supplements ease the symptoms for Sara and other post HPV-vaccine injured patients.

Final Thoughts

Well skilled naturopaths and physicians from Japan, across Europe and the U.S. are putting great effort in trying different protocols with varied positive effects. An example of co-work is Japanese, Danish and British protocols, as described in Orthomolecular treatment by Atsuo Yanagisawa. There is no quick cure fitting everybody. It is an individual and very long process to find the appropriate treatment. There exists great consensus on certain issues. Namely, that we need more testing and research. The more we know about post Gardasil damage at the molecular level, the better a treatment could be adjusted precisely for each patient. Along with more research and improved testing, we need to understand the relationship between this vaccine and the range of side-effects that develop. This will uncover causal connections to the vaccine injuries. Most importantly, we need to share experiences and research. This will help those who need to recover, and hopefully, prevent future victims.

Two Steps Forward One Step Back: Diary of Gardasil Injury in Japan

by Lim Suk Ho

Published on November 19, 2014

7613 views

Momoka received her first dose of the HPV vaccine, Gardasil, in March of 2012. Prior to the vaccine she had mild asthma but was otherwise healthy and active. She was a vocalist and a bass guitarist in the high school band. In 2007, after possible exposure to rabies in Laos, she had three rabies injections. When the family moved to Japan, Momoka also received Hepatitis A and B, the Japanese encephalitis vaccines, as well as the vaccine for measles and rubella. There were no adverse reactions of note to these vaccines. It is only after the HPV vaccine that her health began to decline.

The following represents a diary that Momoka’s mother kept regarding her health after the Gardasil vaccine. The authorship of the article was granted to Mr. Lim, the chiropractor treating Momoka by request of the family. The article was written in Japanese and translated by a friend of Hormones Matter.

First Year Post Gardasil Vaccine – 2012

Momoka was in Year 9 at school and actively involved in school life as a student councilor. She also very busy for preparing high school entrance exam. The symptoms lasted a long time, but were not considered very serious, at least initially. Nevertheless, I decided not to go forward with the third Gardasil injection.

March 27 – First injection of Gardasil (15 years old).
April 15 – Headache started and lasted for 5 days, during this period appetite decreased.
April 20 – Fell, she said ‘I cannot understand why I fell”.
April 23 – Pain in foot, x-ray showed swollen ligament.
May 9 – Lump was found at the injection site that was painful and hot. The pain disappeared in several days.

June 2 – Second Gardasil injection
July and August – Headache occurred only several times, no serious symptoms.
November 22 – Headache. Symptoms of cold lasted for some time from this day.
November 27 – Headache and shoulder pain. Shoulder swelled. Something flying in front of eyes.

Second Year Post Gardasil Vaccine – 2013

From January through March 2013 Momoka was studying hard for her entrance exam and fortunately there were no clear symptoms.
April 20 – Diarrhea continued, but she was fine on the weekend. We suspected the diarrhea to be psychogenic, and visited a psychosomatic medicine (psychiatry) department, and a Chinese medicine was prescribed. The diarrhea and gastrointestinal distress continued off and on through February of 2014.
April 25 – Visited an internal medicine department, Momoka was diagnosed as ‘irritable bowel syndrome’, prescribed trimebutine maleate and etizolam.
April 28 – Momoka became emotionally intense and shouted around.
May 4 – Heart palpitations began. The palpitations became more frequent as time passed.
May 7 – A rash appeared on her chest. She was continuously depressed in May.
July 23 – Felt dizzy and visited a pediatrician. She was diagnosed as orthostatic intolerance (Postural Orthostatic Tachycaria Syndrome – POTS). No medicine prescribed.
July 25 – Momoka became depressed without reason. She suddenly started to cry. We visited a psychosomatic medicine department and she was diagnosed with social anxiety disorder and ADHD. She was prescribed Zoloft and Landsen for one week. During that time, she experienced severe sleepiness. She slept almost all day. After finishing the course of the medication, the sleepiness disappeared gradually.
August 15 – When her cousin piggybacked on her, pain in the back started and lasted for one week, but her mother suspected that the cause is not the piggybacking.
August 27 – Started to have treatment for ADHD with Concerta, but the palpitation was so bad, and she stopped taking the medicine after three days.
August 30 – Had a counseling session in a psychiatric department recommended by her school, and ADHD was denied. Since Momoka’s sister is diagnosed with Pervasive Developmental Disorder and ADHD, I did not think Momoka had suddenly developed ADHD, but did not fully appreciate this until seeing the school psychiatrist.
October 31 – Complained of foot pain, but there seemed to be pain sometimes before this point.
November 3 – Pain in the bottom of eyes, dizziness.
November 8 – When got up in the morning, could not move the neck, the pain was strong, visited an orthopedics, given a poultice. She thought that it was because she was holding a guitar.
November 15 – Her neck and feet still painful.
She had diarrhea often in December, neck pain continued for a long time and she felt that this pain would not disappear forever. Since she started her high school, there was even one day she was fine. After the summer, her mental strength came back, so we thought this was not psychogenic.

Third Year Post Gardasil 2014

January 2 – When got up in the morning, she complained of neck pain. This time it was painful even when it was not moved. She was lying down whole day while growling. Her uncle, who is a physician suggested that Momoka sprained her neck during sleep.
January 3 – The neck pain weakened, but she had severe malaise, and after this day she often complained of severe malaise. (Around this time, slight involuntary movement started to appear in legs).
January 18 – Fever around 38 degree Celsius.
January 19 – Strong pain in the neck.
January 20 – Pain in the whole body. (Around this time, diagnosed as straight neck by an orthopedics.)
January 24 – Since palpitation continued, visited a cardiovascular medicine department and used a Holter monitor. She was diagnosed as premature ventricular contraction and they decided there was no need for treatment.
January 27 – Tonsillitis.
February 3  – Severe palpitation and pain in body.
February 7 –  Small toe swelled and became painful.
February 8  – Symptoms like hypoglycemia, small toe was diagnosed as chilblains by an orthopedics.
February 11 – Severe hunger and dizziness.
February 12 – Cataplexy when coming back from school.
February 17 –  Fingers of one hand swelled and became painful, x-ray results were normal, in the evening fingers of the other hand also swelled.
February 18 – Blood test in a pediatric clinic, CRP normal, white blood cell normal
February 20 – Detailed results of blood test showed no suspect of collagen disease, etc. February 21 – She complained of knees making sounds and could not walk in a normal way.
February 22 – Walking slightly improved, but there was still pain. We started to suspect that this was HPV vaccine injury after joint swelling on February 17. If she did not have this symptoms, we would be still visiting around hospitals a lot. From the end of February, under the guidance of chiropractor Mr. Lim, she started leg and foot exercises, stopped eating sugar and took a large amount of vitamin B (Vitamin B1, B2, and B6). She also took good quality salt.
March 1 – Received 1st chiropractic treatment by Mr. Lim.  The pain in neck, which had continued for half a year, disappeared.  Pain did not return on the following day.  This was a huge surprise to Momoka, and she had decided to overcome her problems caused by Gardasil with chiropractic treatments.
March   3 – Headache.  Felt like the inside of the head was tickled, and felt sick. Contacted Mr. Lim. Hypoglycemia was suspected and a piece of chocolate was taken. The symptoms soon disappeared (this might be caused by continuing a diet without sugar for one week). Complained of taste disorder.
March 4 – Pain on the left half of the body. Lost appetite and could not eat even rice soup.
March 6 – Felt good and played the piano after a long absence.
March 7 – Severe pain in left chest. The pain moved to feet in the evening.
March 8 – The pain continued, but she determined not to take a pain killer and endured the pain. The pain in neck was the maximum.
March 9 – Fever at 37.7 degree Celsius
March 10 – Slight fever continues. Surprisingly, although there was severe malaise, the pain in the neck and foot was weak, and there was no pain at all on the back.
March 14 – Second chiropractic treatment by Mr. Lim. This time, she had the treatment next day as well. We stayed in the town where the clinic was, the cost to travel to the clinic is around $400 dollars. Treated also with a poultice. After this day, when a pain appeared, a poultice was applied, and the pain in that area always disappeared by the next day.
March 16 – Strange pain appeared in small toe, which did not disappear by warming or massaging. The pain was induced even by touching with a cloth.
March 20 – Started a bath with citric acid.
March 25 – Severe palpitation.
March 28 – Stormed by depression. The same kind of depression as when she visited a psychosomatic medicine department last summer.  Difficult to concentrate whatever she was doing.  The arm was heavy, so immersed it in a citric acid bath.
March 29 – Third chiropractic treatment by Mr. Lim particularly around neck and arms. The pain in the neck and back greatly decreased.
April 1 – Pain as if water was boiling in feet. Such a degree that she could not walk.
April 3 – Started to take Protein (whey), but she did not like the taste and stopped in three days.
April 8 – Sever vomiting and diarrhea.
April 15 – Panic attack.
April 19 – Fourth chiropractic treatment by Mr. Lim.  Her back became flexible.
April 24 – Could not concentrate, could not take a note in lessens, lost way in the school, and nearly collided with a utility pole.
April 25 – Spasm through legs.
May 16 – Cracked toe bone. Sounded like she kicked a stair because of irritation. From the beginning of May,she became sensitive to an antiperspirant spray, and her body started jerking.
May 27 – This symptom disappeared by an ultrasonic treatment with a gel by Mr. Ono (who was a student of Mr. Lim).
June 13 – Severe pain in body after a long absence.
June 17 – Started to take supplement for digestive system. She said that she could hear grit grinding in her neck.
June 23 – Felt sick in late afternoon, around 8 o’clock in the evening she had difficulty in breathing and palpitation. Was this caused by wheat? (She had noodle for lunch and biscuits in late afternoon). Just on that day, Mr. Lim told that she should stop eating wheat.
June 25 – In the morning, all of the pain in neck, which was lasting for a long time, disappeared.
June 26 – She said that all of the strange feel in the heart disappeared.
June 27 – Her appetite had returned and she ate a lot of food from the morning.
June 28 – Her eye sight became faint. Probably due to fat of horse mackerel. Pain in the feet.
June 29 – The pain in the feet disappeared by the morning. This kind of quick disappearance of pain was the first time.
July 6 – Started supplement for the second stage, which was for caring liver function.
July 10 – Her eyesight dropped.  Tested and found to have a slight degree of astigmatism.  She had hypoglycemia, which was cured by eating plum.
July 12 – Severe stomatitis lasted for several days.
July 20 – She began taking additional supplements made from natural ingredients for improving liver function as part of the second stage of treatment.
July 30 – Taking Vitamin B2 and B6.
August 3 – Strange feel in the heart and spasm disappeared.
August 26 – School trip to Tokyo. Spasm in her body and difficulty in breathing started after evening meal. Spasm in her body and difficulty in breathing started after evening meal. Mr. Lim advised to take Vitamin B2, a large amount of water, pickled plum, citric acid, lemon and sea salt. The symptoms disappeared in a few hours. This may be caused by busy schedule of the trip, and Momoka also participated in a whole-day concert two days before the trip.

From September onward, no major symptoms. When Momoka kept sitting for a long time or became too tired, the muscle pain or the back pain occurred. However, there were no symptoms in the heart, involuntary movement, panic disorder, and muscle weakness.

Participate in Research

Hormones Matter^TM is conducting research on the side effects and adverse events associated with Gardasil and its counterpart Cervarix. If you or your daughter has had either HPV vaccine, please take this important survey. The Gardasil Cervarix HPV Vaccine Survey.

Hormones Matter^TM conducts other crowdsourced surveys on medication reactions. To take one of our other surveys, click here.

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Between Fear and Hope: Another Japanese Girl Injured After the HPV Vaccine

by Madoka Hazuki

Published on September 29, 2014

4428 views

Yuka was 13 years old when she received the first dose of Gardasil, the HPV vaccine. Prior to the vaccine she was healthy. Her mother describes her as slim, pale, and of average physical strength. She had dry skin and was sensitive to smell but no other ailments. She had never had influenza even when another family member had it. Yuka enjoys drawing pictures, playing music and spends most of her time indoors. She had all infant vaccinations under Japanese government program, but never had optional vaccines such as influenza. She had her first Gardasil shot in August 2012 on her left shoulder, the second shot October 2012 on her right shoulder, and the third shot February 2013 on her left shoulder again.

HPV Vaccine Symptom Chronology

August 2012: Yuka often complained shoulder stiffness. We laughed that she was playing the guitar too much, and I gave shoulder massage to her. She started to take a nap during day, but I thought that it was due to heat in summer.

December 2012: a large number of viral warts occurred on extremities. They were treated by a dermatologist with liquid nitrogen treatment and soon completely cured.

February 2013: Yuka had frostbite on the feet for the first time in her life. The winter was not particularly cold. It was completely cured in three weeks with an ointment and by keeping warm.

May 2013: Yuka had an accident and inured the right eye. She was a member of a Japanese archery club in school, and one day when she was walking with an arrow in her hand, the arrow accidentally hit a wall and it reacted toward her face. She could have stopped the arrow moving toward the face if she had enough grip strength, but unfortunately the arrow slipped through her gripped hand and hit her eye. She had stitches on the bulbar conjunctiva, and the injury was completely cured in one month. I later began to suspect that the injury might be caused by muscle weakness in her hand.

First Hospital Visit Post HPV Vaccine

Sometime in July, I noticed Yuka’s lymph node swelling on the left neck and trapezius muscle swelling on both shoulders, with the left side more swollen than the right. Yuka complained that the shoulders were a little aching. There were no redness or fever. We decided to seek a diagnosis and took her to the hospital.

July 2013: First visit to hospital for the swollen lymph node and shoulders. Her alkaline phosphatase (ALP) test came back very high at 446 IU/L. Since she was growing and so the doctors did not pay much attention to this value. This value has been high throughout. Other lab tests included: Ferritin (Fe) – 52.8 ng/mL, white blood cell count (WBC) – 4670 (she has never been measured for this value before, but her mother has a low value of about 4000), platelet count (PLC_ – 160,000 mcL, blood sugar – 70 mg/dL (about 3 hours after meal), C Reactive Protein (CRP) – 0, hemoglobin 14.5 g/dL, differential leukocyte count normal.

An MRI of her shoulder and neck with contrast agent was completed. The results showed that there was one swollen lymph node with a diameter of about 1.8 cm on the left neck, close to shoulder blade, and there were a large number of swollen lymph nodes with a diameter of about 5 mm on the neck. The trapezius muscle did not appear inflamed on the MRI so the cause of her shoulder pain remained unrecognized.

Second Visit to Hospital Post HPV Vaccine: Additional Tests

Echo test for the neck to the shoulder was negative, like the MRI. A second set of blood tests revealed:

WBC 3410
Fe 93
Blood sugar (2 hours after meal) 85
CPK 39
IgG 1658
Antinuclear antibody was normal.

She was diagnosed with Complex Regional Pain Syndrome, chronic fatigue syndrome, and fibromyalgia. Yuka was prescribed Myonal and Neurotropin and told to come back in one month. The swollen lymph nodes disappeared, but when we came back from a holiday, swelling in both shoulders increased, and symptoms such as fatigue, headache, double vision, light sensitivity, hip joint pain, knee pain, difficulty moving her hands, and muscle weakness in lower extremities occurred. Although she was diagnosed as fibromyalgia and since she did not have fever but had swollen lymph nodes, we suspected that she was reacting to a foreign body. Then we suspected that it might be due to the HPV vaccine.

Third Visit to Hospital Post HPV Vaccine

September 2013: This visit was follow-up to the previous visit and further tests. Yuka had a head MRI and EEG. Both tests were normal. The additional blood tests showed continued low white blood cell counts, WBC 3700. She was tested for amylase, a marker of pancreatic function. The results were high at 146 U/L. Her blood sugar was 86 mg/dL (2 hours after meal). Her creatine kinase (CK) was 42 U/L and creatinine 0.40 mg/dL, low. Other values were normal.

A doctor suspected peripheral neuropathy due to the HPV vaccine. The doctor said that since there was no inflammation, the acute phase had passed, continuing daily activities would help rehabilitation, and she would recover.

Fourth Hospital Visit Post HPV Vaccine: Cerebellar Ataxia

September to October 2013. This visit was also follow-up to the previous visit and further tests. By this point, Yuka had gained weight. She wanted to eat something sweet and salty. Her appetite increased. She also had fatigue and headaches, was experiencing difficulty walking. She could not maintain balance while standing with her feet together. I noticed that Yuka had ataxia. She also had swelling on her face.

She was diagnosed with cerebellar ataxia, but was told that she would recover since there was no inflammation and the acute phase has passed. She was also told that since the functional disorder was mild she would almost completely recover. However, I felt that the symptoms were gradually worsening.

Test results: There was no abnormality in electromyogram. In the blood test, the values of WBC, CK, and creatinine decreased slightly, pyruvic acid was normal, metabolism of sugar, fat and protein was normal. She started fursultiamine supplement together with other vitamin Bs and magnesium. (These supplements were started after reading Dr. Lonsdale’s articles.)

Fifth Hospital Visit Post HPV Vaccine

October to November 2013. We went to the neurological department, Kagoshima University Hospital. This visit was due to her symptoms worsening. She needed to see a specialist of immunology and encephalitis.

We suspected immune-mediated encephalitis, and visited this hospital, which has a research institute. Around this time, this hospital was designated as one of hospitals for the treatment of HPV vaccine injured.

There were no abnormality in blood test and thyroid function (tested only FT4 and TSH), catecholamine 3F normal, vitamins normal (probably due to supplements), the values of WBC, CK and creatinine were still low, amylase 166, CMV-IgG 41, Head MRI normal, CBF (SPECT) normal.

The doctor was convinced by seeing swollen shoulders that the cause was HPV vaccine; although there was no significant decrease in blood flow in SPECT. Since there were reports about symptoms like a collagen disease due to an immunostimulation reaction caused by HPV vaccines, we were told that Yuka would have a steroid pulse therapy. She also had clear symptoms of cerebellar ataxia.

After one course of the steroid pulse treatment, symptoms due to cerebellar ataxia and headache disappeared, but there was no change in the shoulder. Immediately after the pulse treatment, she complained pain in the whole body and strong headache.

December 2013: Fatigue and swelling in the shoulders almost disappeared. Her WBC decreased to 2200. There was one onset of hyperventilation and visited ER in Kagoshima University Hospital and subjected to arterial blood gas test. The blood test results at the time of hyperventilation showed there were decreases in phosphorous (P), postassium (K), magnesium (Mg), and ferritin( Fe).

She also had some blood tests and the results were as follows: monocyte 11.8 H, neutrophil 41.8 L, and WBC – leukocyte 2870L. This was one month after the steroid pulse.

January 2014: Yuka began taking an iron supplement, (Fe 20, Ferritin 44). Her iron levels increased to (Fe 65, Ferritin 21.1) after taking the supplement. There was recovery for WBC to 4900 and her platelet count increased to 192,000. She continued to take fursultiamine (Shionogi & Co., Ltd., Verix, neo).

April 2014: Her period stopped.

May 2014: As the symptoms seemed to subside, she stopped taking supplements.

June 2014: She became mentally unstable and irritable. Her character has changed. We wonder if her brain is affected to some extent.

September 2014: Yuka has started to have fatigue, and visited the hospital. There was decrease in WBC 3200 and PLT 130,000, and with the results of Fe 36 and Ferritin 48.9, she has started to take an iron supplement again. Thyroid function was normal (FT 41.1, TSH 1.6, TSH receptor antibody normal). She is also taking Chlorella, zinc, magnesium, and fursultiamine.

Since the beginning of August, Yuka is taking Kamishoyosan-based Chinese medicine called, whose efficacy includes premenstrual syndrome, dysmenorrhea, irregular menstruation, menopausal syndrome, chronic hepatitis, liver cirrhosis(early stage), chronic gastritis, irritable bowel syndrome, anxiety disorder, insomnia, hand and finger dermatitis, etc.

Around July 2014, her nails started to show white raised vertical lines. We worried that she might be lack of zinc, and she started to east oysters a lot, but from August Yuka asked to have zinc supplements instead of eating oysters. We thought the loss of period might be due to zinc deficiency and Yuka was also worrying about hair loss possibility. We wonder, which is better for zinc deficiency eating oysters or taking supplements?

Most Recent Blood Work Post HPV Vaccine

September 2014:

TSH receptor antibody （－） binding inhibition rate 3.8%,
Thyroid test　(Thyroglobulin antibody by passive agglutination) LT100
Microsomal test (Anti thyroid microsomal antibody) LT100
Anti-TG antibody LT 10.0
TPOAB LT5.0
Thyroid globulin 6.7
TSH 1.6
FT4 1.1

One Year Post HPV Vaccine

Last summer when Yuka first became ill, she was suspected to have the Kikuchi disease. After most of her symptoms had disappeared around early this year, her health started to deteriorate again this spring, and this time the symptoms like those of the Kikuchi disease seemed to reappear.

There have been two cases of the Kikuchi disease after HPV vaccine in Japan, and one of which has been reported in the literature.

Yuka has a sister (15 years old), who also had Gardasil at the same time. She also had swelling and hypesthesia on the right face around the same time as Yuka had. Yuka’s sister loves sports and plays tennis outdoor, and is suntanned through the year. She had a severe acne, and was taking an antibiotics (several of two week courses) and Vitamin Bs when she had Gardasil. Yuka’s sister did not have any further symptoms due to Gardasil. We wonder if the antibiotics helped or Vitamin Bs helped Yuka’s sister or maybe even the Vitamin D formed by being outdoors. Both of the girls still have swelling on their faces, but no hypesthesia (diminished capacity for sensation).

Postscript: This article was written originally in Japanese by Yuka’s mom and translated to English by Madoka Hazuki.

Participate in Research

Hormones Matter^TM is conducting research on the side effects and adverse events associated with Gardasil and its counterpart Cervarix. If you or your daughter has had either HPV vaccine, please take this important survey. The Gardasil Cervarix HPV Vaccine Survey.

Hormones Matter^TM conducts other crowdsourced surveys on medication reactions. To take one of our other surveys, click here.

To sign up for our newsletter and receive weekly updates on the latest research news, click here.

What Else Can I Do To Help?

Hormones Matter^TM is completely unfunded at this juncture and we rely entirely on crowdsourcing and volunteers to conduct the research and produce quality health education materials for the public. If you’d like help us improve healthcare with better data, get involved. Become an advocate, spread the word about our site, our research and our mission. Suggest a study. Share a study. Join our team. Write for us. Partner with us. Help us grow. For more information contact us at: info@hormonesmatter.com.

To support Hormones Matter and our research projects – Crowdfund Us.

Walking on the Edge of a Sword: Cervarix Injury in Japan

by Machiko Kurosaki

Published on August 20, 2014

4545 views

This is the story of my teenage daughter who, beginning in 2010, received a series of vaccinations that culminated with the three shot HPV vaccine, Cervarix (Gardasil in the US). Although she had some health issues as an infant and child, she was thriving and doing well prior to the vaccine. After the Cervarix vaccine series this all changed.

Sharne was born in 1998. Her health issues pre-vaccine included: pervasive developmental disorder (PDD), a form of Aspergers, infantile asthma, atopic dermatitis, pyelitis, otitis media, Candida, hemolytic streptococcus, pneumonia, wart, FMF (periodic fever syndrome), agrochemical sensitivity and repeated stomatitis. Her immunization history was as follows:

15 May 2010 DT BIKEN (Lot. No. 2E007 2011.6.8, 0.1ml) left arm
19 March 2011 Japanese encephalitis BIKEN (JR059 2012.5.18, 0.5ml) left arm
25 June 2011 Measles and Rubella Takeda (Lot. No. Y116 2012.2.24, 0.5ml) left arm
27 July 2011 HPV Cervarix 1st shot (Lot. No. AHPVA129CA, 0.5ml) left arm
17 October 2011 Cervarix 2nd shot (Lot. No. AHPVA143AA, 0.5ml) right arm
26 March 2012 Cervarix 3rd shot (Lot. No. AHPVA161BA 0.5ml) left arm

Before the Cervarix Vaccine

Sharne was born October 02, 1998. Prior to Cervarix vaccine, she enjoyed her school life. She liked to be in the school rather than being home, including going to an evening school for extra study. As she wanted to gain accreditation to a high school, she tried to go to school even when she had a fever of 40 degree centigrade because in order to get the accreditation she was allowed to be absent from school only up to 5 days

Prior to the HPV vaccine, Sharne did not need to sleep for a long time, and she woke up early even when she went to bed late the day before. Before the symptoms occurred, she used to wake up at five o’clock in the morning. She’d read her favorite books, and then went to run around the house for about 10 minutes.

She was an athlete and was the fastest 1000 meter runner in her class when she was in 7th grade. She had strong lungs, and her respiration rate and pulse rate had been low since she was a little girl, but it is now is much higher. Her pulse is averages 70-80 beats per minute; average for some, but several points higher for her.

She used to prepare breakfast by herself, do homework and go to school. She was really independent, managed her own schedule, found whatever she wanted to do, and when she needed to be taken to or picked up she just told me the time to be taken to or picked up. She never conflicted with others, avoided any dispute, and was a very quiet, gentle and good natured child.

After the Cervarix Vaccine

Now she cannot do what she could do previously. She has difficulties remembering things. She cannot remember what she has done. She cannot manage her own things, stationary, notebooks, glasses. She used to look after her things very carefully, and never asked where they were. She’d never forgotten what she needed to take to school, but now she leaves her glasses on the floor of her bedroom or in a washing bowl even for two weeks. She cries when she cannot find her notebook, and she cannot remember what she did in the past.

Her IQ and test scores have dropped a lot and continue to drop.

She says impolite things to teachers or family members and becomes violent like an insane person. She hates most of people around her.

Recently, she cannot understand what she is going to do or where she is. In addition, she has muscle weakness in legs, and cannot raise her left foot. Her grip strength dropped from about 30 kgf to 5 or 6 kgf.

The Progression of Symptoms Post – HPV Vaccine

Looking back now, it seemed to have started after the first Cervarix shot, but it gradually worsened for about two weeks after the third shot, and half a year later she could not get up at all. Symptoms:

After 1st shot: asthma attack (the first time for seven years).
After 2nd shot: malaise, long-lasting urticaria, repeated nosebleed
After 3rd shot: in MRI, extension of T2, cerebral blood flow decrease, atrial rhythm, arrhythmia, increase of eosinophil, IgE, IgD, and complement titer, abnormal malaise, chronic slight fever, clouding of consciousness, hypersomnia, brain function deterioration such as memory, comprehension, calculation, and execution functions, personality change, irritability, aggression, depression, childishness, behaving like a baby, hyperpnea, respiratory distress, muscle weakness, back pain, headache, parotitis, temporomandibular arthritis, dysphagia, stomatitis, abdominal pain, vomiting, diarrhea, back pain, muscle pain, abnormal vision, photophobia, double vision, reduced vision, etc.

Timeline of Symptoms Post Cervarix Shots

2012

April: about 2 weeks after the third shot (March 26), exertional hyperpnoea and muscle weakness occurred.

May or June: started experiencing malaise, gastrointestinal symptoms such as vomiting, headache, chest pain, and anginal symptoms during nocturnal rest. There was muscle weakness when getting off from her bicycle in the school and could not stand up.

September: could not get up, altered state of consciousness lasted for a long time, there were anginal symptoms, atrial rhythm, arrhythmia, blood flow decrease, extension of T2 in MRI, and leukoaraiosis.

October to December: treated with steroid. Although malaise had dramatically improved, brain blood flow did not improve, accumulation was observed in the hippocampus, and the treatment was stopped.

2013

January: malaise worsened seriously. There were depression, suicidal thought, and personality change (irritability, excitability, persecutory delusion). Even in school she cried loudly like a one-year old baby and dashed out from the classroom.

June: we noticed the association with the vaccine when watching a TV news about suspension of recommendation of HPV vaccine. Around this time, she became violent at night. Cried loudly like roaring. Sharne threw her younger brother by the full force. (This violence disappeared soon after IVIG.)

August: we saw Dr. Sasaki, and he proposed three treatments, that included, steroid pulse, IVIG, and an immunosuppressive agent.

September: immunoglobulin (due to fever, discontinued on the 3rd day, she became cheerful on the 2nd day, and the sensation of toes returned. Malaise also improved a little. Blood flow increased, and the best results for SPECT so far), but involuntary movement gradually intensified.

2014

February: steroid pulse (after about 2 weeks, headache and back ache, etc. decreased, cognitive function and facial expression a improved slightly, the time of sleep during day decreased, but after about 20 days new systemic joint pain and excruciating pain started, and malaise, gastrointestinal symptoms, etc. also restarted.)

Her sensitivity to glare and the double vision disappeared. Involuntary movement started to appear.

March: 2nd cycle of steroid pulse (this time, there were no effects on mental strength and malaise, and there was a symptom like muscle weakness, which had appeared with the altered state of consciousness in the autumn 2012), involuntary movement and muscle weakness seemed to increase, and IgG decreased.

May: she was depressed. She received immunoadsorption therapy, involuntary movement decreased, but spasm and tremor have started. Mental motivation improved, and gentle character has returned. Malaise has alleviated, and daily life became almost normal.

June: malaise returned in one week after discharge from the hospital, and IgG decreased.

July: motivation dropped. Mental symptoms have started.

Lab Tests and Other Diagnostic Results

Cerebrospinal fluid test results: autumn 2013: contaminated with blood, but IgG was as high as 5.8 (this is not influenced by serum contamination)
February 2014: cell count 12, CD4 64.9, CD8 31.4, cytotoxic T cell, granzyme B 1.3
Diagnosed as a possibility of subacute encephalitis.
April 2014: abnormal values for various types of interleukins, etc.
June 2014: antiganglioside antibody positive

The Lesson I Learned too late

‘We need question even what the government is doing.’ This is what I learned with this huge and irreparable mistake. I tell our story because I do not want to other parents to make the same mistake and because we need help understanding the post-vaccine reactions, so that our children, already injured by the Cervarix vaccine can recover.

Vaccination of boys has already started in some countries, and clinical trials have begun in Japan. In order to protect the future of children, please think and research before you vaccinate. I will let my voice be heard in order for many people to receive information about the dangers of the HPV vaccine.

Cervarix Adverse Effects in Japan

There are more than 2000 reports about adverse effects in Japan, but some doctors refuse to report. There have been more than 1000 contacts to the network of HPVW injured people in Japan, the number of people registered exceeds 255, but still there are only a few medical institutions that care for injured. The government should support and subsidize medical institutions that exert themselves for elucidation of the mechanisms of the cause and establishment of the way to treat underlying causes.

Postscript: This article was written originally in Japanese and translated to English by a friend of Hormones Matter.

Participate in Research

Hormones Matter^TM is conducting research on the side effects and adverse events associated with Gardasil and its counterpart Cervarix. If you or your daughter has had either HPV vaccine, please take this important survey. The Gardasil Cervarix HPV Vaccine Survey.

Hormones Matter^TM conducts other crowdsourced surveys on medication reactions. To take one of our other surveys, click here.

To sign up for our newsletter and receive weekly updates on the latest research news, click here.

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Hormones Matter^TM is completely unfunded at this juncture and we rely entirely on crowdsourcing and volunteers to conduct the research and produce quality health education materials for the public. If you’d like help us improve healthcare with better data, get involved. Become an advocate, spread the word about our site, our research and our mission. Suggest a study. Share a study. Join our team. Write for us. Partner with us. Help us grow. For more information contact us at: info@hormonesmatter.com.

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The Gardasil Experience in Denmark: One Family’s Story

by Charlotte Nielsen

Published on January 13, 2014

8792 views

In Denmark, the childhood immunization program has included the HPV-vaccination since 2009. The first injection is given with the third and last “MFR”, (Measles, mumps, rubella). Gardasil is offered for free for girls aged 12. As a “follow up”, young girls have been offered the vaccination for free as well. The plan in Denmark is to expand the standard program by including girls aged 15-18. Many Danish women and even some young boys have received the vaccination by co-payment.

According to Danish health care authorities they received 468 reports about 1022 possible side effects to Gardasil during the period 2009-2012. At that point, 53 cases were classified as “serious” out of which 24 were classified “possible” and 29 “less possible”.

From the period of January 1, 2009 through August 1, 2013, 1,392,101 vaccine doses of Gardasil were sold in Denmark. Since Gardasil comes in a three dose schedule, approximately 460,000 young Danish girls in Denmark may have had the HPV vaccine. During this period was reported 41 suspected serious adverse effects considered as “possible” due to Gardasil.

The latest report from September 26. 2013 describes an increasing number of reported side effects – 281 reports including 1528 side effects, 80 classified “serious”, 17 “possible”, 29 “less possible” and the last 34 not possible to assess primarily due to missing a diagnosis or too little information.

Most reported side effects were syncope or dizziness, headache and general malaise eventually accompanied by “unspecific symptoms”.

The diagnosis of Postural Orthostatic Tachycardia Syndrome (POTS) has been seen in 4 cases (plus one former case). POTS is suspected to be a new possible side effect to Gardasil by the Danish health authorities, and therefore, the 5 cases were reported to EMA – European Medicine Agency – for further investigation. Unofficially, we have at least 10 cases of POTS as side effect to Gardasil in Denmark now. The next official Gardasil side effect-report will be released to the public late January 2014.

Our Story of Gardasil Injury

Denmark has a population of 5.5 million people. We live in a democracy – our present government consists of three parties ranging from the socialist party, the social democrats to the social liberal party. In Denmark we pay high taxes (normally about 42-50%, top taxes 70%). We have a free health care service to help in any case – or at least we believed so…

About a year ago life changed in our family. Our youngest daughter Sara got her first vaccination by Gardasil in late January 2013.

A few days later she began feeling ill continuously for weeks and after four weeks she had a very high fever and pain in her throat. A few days after that, small red spots appeared on her body. No specific infection could be proved by blood test. She was generally unwell for weeks with a low fever and was on and off school.

Sara had her second vaccination by Gardasil late March 2013. Two days after she fainted in the bathroom. During the following days she felt she could faint again and was feeling very dizzy, she had strong pains in her leg muscles and arms, along with sensory disturbances such as tingling/burning sensations under the feet and in the hands. She was exhausted (could hardly go for a very short walk). Abdominal pains appeared often after a meal. A strong and constant headache developed. She had problems with regulation of temperature. Night sweats. She felt too warm or too cold during the daytime. More symptoms appeared later on.

Sara went to school a few days a week and only a few lessons.

During the last four months she has been at home socially isolated, extremely limited in her daily activities and just recently begun home teaching, two lessons a week. (The law permits 8 lessons at home in the case of long term illness).

Sara has been through an incredible and almost unbearable number of symptoms and exacerbations in recent months.

Before Gardasil, Sara was a healthy 12-year-old girl singing in a choir at the local church, playing the piano and dancing standard-Latin twice a week. Now, in addition to constant headache and muscle pain, dizziness and nausea she has:

Low appetite, difficulties in feeling hunger or satiety, suddenly put on weight during a few weeks and then losing weight.
Muscle power decreased in general. Can only walk 1.3 km slowly and in pain.
Abdominal pains, temperature regulation out of balance (too hot//too cold/night sweats). Sensory disturbances: Tingling, burning, numbness and sleeping limbs. Arms burning/cool inside.
Symptoms from skin, teeth and joints.
Fatigue and very low energy. Even a shower is exhausting.
Problems falling asleep because of pains.
Concentration difficulties, memory problems. Problems finding the words, hard to read (eyes are easily getting tired).

Many of Sara´s symptoms have improved over time, but still most of these side effects are to some degree present.

Diagnosing Post Gardasil Illness

At the beginning we had Sara´s ears and eyes examined by specialists but neither sinusitis or any visual problems or anything else to explain the constant headache were found. Sara was examined at children’s ward at a University Hospital with no results at all. All lab tests, CT and MR-scans were normal. Only “positive result” was low D-vitamin (a relatively normal condition in Denmark). By a general practitioner Sara had tests (via the Danish Serum Institute) for synaptic encephalitis, cerebral vasculitis and neuropathy – all negative. A chiropractic neurologist found her symptoms based in the autonomic nervous system. His exercises (functional therapy) could not change the headache or take away the dizziness – his conclusion was therefore it must be a toxic reaction due to Gardasil.

The children´s ward did not pay much interest in such results. We were met by arrogance and a skeptical attitude both within hospital and general health care system just as many other patients described similar experience on their way through the health system.

In August 2013 we went to a Swiss outpatient clinic that we had heard about accidentally. We stayed two weeks at Paracelsus (www.Paracelsus.ch), Lustmühle, Switzerland. A holistic treatment in a bio-medical Clinic situated in the Swiss Alps.

All treatment is natural if possible, but patients have to prescribe and accept traditional medication, if necessary. Sara got all sorts of treatments at the clinic and back at home supplements, homeopathic medication, nutritive diet; plus sub cutaneous injections of Mistletoe. The diagnosis from Paracelsus is:

Severe toxic reaction after 2nd Gardasil immunization March 26th 2013 initiating fibromyalgia syndrome with acquired mitochondropathy.

In addition, our daughter was diagnosed by a physician at a Danish hospital, (not at children’s ward) as having POTS. POTS was reported to health care authorities as a possible side effect to Gardasil. To help the symptoms of POTS we got some advice from the hospital. Chemical medication is an option but only a treatment of symptoms. The basic damage is treated by Paracelsus, Switzerland which provides the best chances to succeed in a cure of the underlying conditions and injuries.

Working with Researchers and Physicians for Post Gardasil Illness

Unfortunately, it is up to every single family/and patient to decide what treatment to choose (and to pay for). We went to Switzerland and we are seeing a slow but promising recovery and progress. We also stay in contact with researchers abroad. We received the advice indirectly from professor Yehuda Shoenfeld, Israel, to use the treatment Lipid Replacement Therapy recommended by Professor Garth Nicolson, USA. We have given our daughter the “NTFactor ATP” powder for about 4 1/2 months now. The Swiss doctor welcomed this dietary supplement.

Yehuda Shoenfeld, Israel, is a professor and head of Zabludowicz Center for Autoimmune Diseases, Sheba Medical Center (Affiliated to Tel-Aviv University) researching in ASIA, Autoimmune/inflammatory Syndrome induced by adjuvants in vaccines. Working together with Lucija Tomljenovic.Tomljenovic and Shoenfeld have described several cases of adverse side effects connected to Gardasil. Sin Hang Lee told from his research that Gardasil is consisting remains of genetic modified DNA from HPV-virus bound to the adjuvant. He investigated 16 samples of HPV-vaccine doses from 9 different countries.

Shaw and Tomljenovic proved a connection Gardasil/autoimmune vasculitis by post mortem investigating brain tissue specimens of two young girls who suffered a sudden death for no clear reasons – except vaccination by Gardasil. The research showed that the blood-brain barrier was penetrated by HPV-16-L1 antigen from Gardasil. This leading to encephalitic conditions might have caused the death of the two young girls and likely in more cases as well.

Gary Null, PhD and Nancy Ashley VMD wrote “Gardasil – A Deadly Vaccine” mentioning several cases of serious illness and death.

They all have found indices showing a clear connection between Gardasil and serious adverse side effects – even leading to deaths.

The more researchers find out about these connections and causals – the closer medical science might get to find a cure.

This has already partly happened – in Germany two physicians have invented a “nosode” medication (small tablets), to antagonize some of the damage that Gardasil is causing. Until now there have been promising results – but this work has of course not been accepted or respected by health authorities either in Germany or Denmark yet.

Understanding the Side-Effects of Gardasil and Parent Activism in Denmark

When our daughter became ill, I began to research using Google to find out about HPV-vaccination and side effects. In Denmark we had very little knowledge in April 2013.

In Denmark we have one organization dealing with questions referring to vaccinations giving advice to support a free choice based on relevant information. The organization named “www.VaccinationsForum.dk” knew at that time only a few Danish young girls with side effects after the HPV vaccination. Together we found more information and researchers around the world.

A family stepped forward with their 14-year old daughter in the Danish newspaper Politiken, April 2013. Other newspapers made articles as well.

We accepted together with our daughter a short TV interview in September 2013 – and more followed.

A series of articles in Danish newspapers were published over the summer 2013 as well as radio, TV news (we have one national TV station “DR” and one private “TV2”, TV2 has local stations as well) – we saw a veritable media and public “wake up” in Denmark.

The number of victims showing up grew as focus was finally on HPV-vaccination and its side effects. Thirty new cases of severe side effects appeared within two months, then it was 50…Patients and their families simply did not know about the possibility of side effects until then.

We participated as a family at a meeting in September 2013 arranged by patients. We let the media cover the meeting. Everyone reported the long and exhausting process of seeking treatment post – Gardasil injury, often with no diagnosis or relevant treatment offered. Almost all of the Gardasil injured experienced deterioration over time. Several “HPV” groups appeared over summer and fall 2013 in Danish at Facebook – by now there are over 250 cases known in Denmark with adverse side effects. One Facebook group is found by the text: “Til kamp for retfærdig oplysning om HPV” (Fighting for a fair information about HPV-vaccine).

The health authorities do not gladly accept the reported cases as causal to Gardasil. But as mentioned in the introduction we have seen a bigger number of reported side effects since August 2013, probably according to the public interest aroused by parents, patients and the media.

Legislative Hearings on Post Gardasil Injury – A Victory for Parent Activism

Since August 2013, Danish politicians were informed by parents and patients and little by little are getting involved.

On November 7, 2013 there was a political “open hearing” within Danish Government´s Health Committee to discuss the HPV-vaccination and its side effects. More than 70 individuals and families sent their case stories to the politicians. It made a strong impression. Many of us even received answers – some very short and warm, some long and cool.

The Minister of Health Care chose to forward the problem to the “Regions” (Denmark is divided into 5 regions). The main tasks of the regions are: hospital services, mental health and health insurance including private practitioners and specialists.

Many case stories were once again sent – this time to the politicians of the Regions – and finally it seems that the side effect problems post Gardasil are being taken seriously.

The heart-breaking thing is that we might get a “council of experts” in Denmark. There has been a political set up “closed hearing” including five-six professors and physicians from Danish hospitals and one general practitioner. We worry that the “experts” will not have any idea what went wrong with Gardasil and the post Gardasil side-effects. They will not know how to find a cure for or treat the serious illnesses that follow the HPV vaccine. Unless health care authorities and “experts” by a small amount of humility are willing to take a look at researchers around the world and open up their traditional medical minds to all kinds of treatments.

The Danish Society for the prevention of Cancer (Kræftens Bekæmpelse) and Danish health authorities have sort of misunderstood the “discussion” making it a question of pro or contra cervical cancer. Added to that, many people have misunderstood what the HPV-vaccination really is – they are convinced it´s a vaccination against cancer – a laudable hope for humanity but not exactly what Gardasil and Cervarix are. Citizens in Denmark are not informed properly. No warnings about serious side effects have been forwarded from health authorities to practitioners to patient and parents. The media have unveiled physicians in double roles cultivating convenient connections qua their “side jobs” as consultants at medical companies producing and selling Gardasil. These physicians are, for example, employed by the Danish health authorities and there lay our concern regarding the ‘expert’ panels.

More Signs of Progress from Parent Activism against Gardasil

We have succeeded as parents and as a vaccination organization in Denmark to wake up the media, the public and politicians who are now slightly showing some interest in all the side effects caused by Gardasil, the HPV-vaccine. A small amount of money ($46,000 dollars in 2014) has been politically dedicated to investigate HPV-vaccine side effects, inform patients and health care staff and to find out how to examine the patients properly and identify the relevant diagnoses and treatments for post Gardasil injuries.

The first two young girls have now received official insurance according to their serious and disabling side effects after Gardasil, even though these illnesses were not accepted by Health authorities to be more than “possibly” due to side effects. More cases of patient insurance are following in Denmark. Danish health insurance is not depending on the health authorities.

We must keep on the good work and networking which cannot be controlled by powerful authorities or financial interests. We can even exchange information worldwide. Thanks to everyone who is taking part in this backlash against side effects due to HPV-vaccination.

We matter as parents. Researchers all over the world are participating. The medical industry is, of course, soon coming up with new vaccines trying to cover more HPV-types without using the emergency break. Future victims will come without doubt. We must never hesitate to do whatever we can to prevent this disaster to go on.

Charlotte Nielsen, Denmark

Retired occupational therapist and the mother of three.

Update

As of November 30, 2013 Health Authorities have recognized 16 cases of POTS. The number continues to grow.

Participate in Research

Hormones Matter^TM is conducting research on the side effects and adverse events associated with Gardasil and its counterpart Cervarix. If you or your daughter has had either HPV vaccine, please take this important survey. The Gardasil Cervarix HPV Vaccine Survey.

Hormones Matter^TM conducts other crowdsourced surveys on medication reactions. To take one of our other surveys, click here.

To sign up for our newsletter and receive weekly updates on the latest research news, click here.

What Else Can I Do To Help?

Hormones Matter^TM is completely unfunded at this juncture and we rely entirely on crowdsourcing and volunteers to conduct the research and produce quality health education materials for the public. If you’d like help us improve healthcare with better data, get involved. Become an advocate, spread the word about our site, our research and our mission. Suggest a study. Share a study. Join our team. Write for us. Partner with us. Help us grow. For more information contact us at: info@hormonesmatter.com.

To support Hormones Matter and our research projects – Crowdfund Us.

Exercise to Alleviate Fatigue

by Chandler Marrs, PhD

Published on November 5, 2013

5362 views

We all know that exercise is good for us, but few know how truly important it really is. I work with a woman who was injured by Gardasil. Prior to her vaccination, she was healthy and active, but after the vaccination, immediately, and in the years that followed, she has endured a complex array of symptoms that included intense and unremitting fatigue, regular bouts of dizziness and syncope, hypersomnia, muscle pain, neuropathies, intense salt and water cravings, and excessive weight loss.

As we have worked to identify various possible culprits, and we have identified a few, one thing that struck me as absolutely fascinating is how she managed her ordeal, how she managed her dizziness, syncope and hypersomnia before knowing what was wrong. She managed with exercise (and salt, water, and now some medications). She told me, that although it was excruciatingly difficult at first, exercising reduced her dizziness. More specifically, aerobic exercise provided her with 4-6 hours of non-dizzy, non-blackout functioning, while weight-lifting could provide her with as much as 24 hours of functioning. This was intriguing, to say the least. What biochemical factors were altered by exercise that allowed her periods of functioning and how did the type of exercise moderate the duration of functioning?

Before I tell you what I think may be the answer, let me backtrack a bit and tell you about something else I have been pondering as of late, the nature of fatigue. Fatigue is one of those symptoms that is ubiquitous across so many syndromes that it is often overlooked as a clinically important indicator of anything. This is a shame because fatigue can tell us so much. Even with the syndrome that bears its name – chronic fatigue syndrome – the debates about the reality of fatigue as a meaningful physiological attribute of disease are rampant. What is fatigue? Where does it come from? Does chronic fatigue even exist?

What is Fatigue?

At its most basic level, fatigue is a lack of energy. And while there may be a myriad of environmental or outside sources of fatigue, like stress, workload, exercise, lack of sleep, poor nutrition, and even an array of disease states whose core symptoms include fatigue, the internal components of fatigue all point to a change in biochemistry that reduces cellular energy production and usage. Something in our external or internal environments flips an energy switch. What is that switch?

Mitochondria and Fatigue

Yes, I said mitochondria. Harken back to your high school biology, remember those energy powerhouses inside the cell, responsible for generating ATP – adenosine triphosphate – the cell’s chemical energy – without which, the cell dies. Even if you don’t remember, trust me on this, we need working mitochondria to survive. Mitochondrial disease can be devastating because it affects the most basic functioning of the cell, its energy usage. From a cellular perspective, damaged or deficient mitochondria impair all the major metabolic pathways necessary for building, breaking down or recycling the cell’s molecular machinery, even down to preventing DNA and RNA synthesis. And as logic would have it, organs that require the greatest energy are affected most by mitochondrial disease or injury; think heart, lungs, brain, liver, GI tract and muscles.

Mitochondrial injury or dysfunction can occur by a number of mechanisms, by an inherited mutation, a spontaneous mutation or by environmental factors. Mitochondria are particularly sensitive to all the toxic insults of modern living, bad food, sedentary lifestyle, stress, environmental chemicals, medications and vaccines. Over time, and after repeated exposures, these insults reduce mitochondrial functioning through a process called oxidative stress. All those ‘anti-oxidant’ concoctions on the market are to reduce oxidative stress.

Long story short, and by way of a gross over-simplification, low or dysfunctioning mitochondria create a myriad of complicated symptoms. Depending upon the organ(s) where the dysfunction occurs, that’s where disease develops. No matter where the mitochondrial insults take place, the loss of energy will lead not only the dysfunction of that organ system, but also, to an overall sense of fatigue. Thus, fatigue, at its most basic level, means some sort of mitochondrial loss of function. When fatigue is severe, unremitting and presents with what seems like a cluster of unrelated symptoms, it is very clinically relevant. Indeed, fatigue may be the key clinical indicator.

Exercise and Mitochondrial Biogenesis

What does all this have to do with exercise and our post Gardasil patient with symptoms that included fatigue, dizziness, hypersomnia, muscle pain, among others? Well, it turns out, a lot. Let’s begin with exercise.

Exercise increases mitochondria, in number and in size. The act of exercising tells our cells to produce more mitochondria. It’s called mitochondrial biogenesis. On the most obvious level, this makes perfect sense. When we exercise our demands for energy increase and to meet those needs our cells respond by birthing more of the machinery that produces this energy.

Not knowing any of this, or that post vaccine injuries could be attributable to mitochondrial insults (see our article about thiamine deficiency post Gardasil and oxidative stress), somehow, intuitively, our Gardasil injured woman felt she needed to exercise to survive and, unlike so many of us, she listened to her body. By exercising, she increased the number of mitochondria, effectively compensating for their deficits in functioning. Think about it, if you can’t have optimum energy production in the machinery you have, but you still need a certain amount of energy output to survive, increase the number of machines producing that energy. The exercise didn’t fix what was broken, but it may have helped her body to function and survive. She increased her cellular energy by exercising. And the increase in energy reduced her dizziness and blackouts.*

The fact that exercise may alleviate fatigue and do so by changing the most fundamental aspect of cellular functioning, points to the possibility of a wonderfully simple and elegant, non-medication based, therapeutic option for folks suffering with fatigue – related symptoms. Some physician/researchers suggest that exercise, under the guidance of trained experts, also improves symptoms associated with some mitochondrial related conditions.

I have not yet figured out why the different types of exercise yielded different levels of functioning, perhaps an exercise physiologist can weigh in and clarify that for us, but it is clear from this case and from the research materials on the subject of exercise and mitochondrial disease and injury that exercise is a critical component of maintaining or managing cellular energy requirements. Sometimes it is the most simple solutions that alleviate the most complicated of problems.

*Post Script

I should mention that exercise is in no way a ‘cure’ for the serious injuries and illnesses that she and others sustain. There is quite a bit of controversy regarding whether exercise is safe or effective for individuals with chronic fatigue and other conditions. Individuals with health issues should not begin an exercise program without consulting their healthcare provider. It should also be noted that the case presented here represents a particular history of symptoms and in no way reflects a prescription or recommendation for salt or water loading or even exercise.

Participate in Research

Hormones Matter^TM is conducting research on the side effects and adverse events associated with Gardasil and its counterpart Cervarix. If you or your daughter has had either HPV vaccine (we hope to launch the male version soon), please take this important survey. The Gardasil Cervarix HPV Vaccine Survey.

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Increased Media Coverage, Increased Side Effect Recognition

POTS, ME and Mitochondria

Sara’s Recovery from Gardasil Injury

Correcting the Post Gardasil Thiamine Deficiency

Sara’s Health Today

The Toll Gardasil Recovery Takes on the Family

Final Thoughts

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First Year Post Gardasil Vaccine – 2012

Second Year Post Gardasil Vaccine – 2013

Third Year Post Gardasil 2014

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What Else Can I Do To Help?

Join Heal with Friends

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HPV Vaccine Symptom Chronology

First Hospital Visit Post HPV Vaccine

Second Visit to Hospital Post HPV Vaccine: Additional Tests

Third Visit to Hospital Post HPV Vaccine

Fourth Hospital Visit Post HPV Vaccine: Cerebellar Ataxia

Fifth Hospital Visit Post HPV Vaccine

Most Recent Blood Work Post HPV Vaccine

One Year Post HPV Vaccine

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Before the Cervarix Vaccine

After the Cervarix Vaccine

The Progression of Symptoms Post – HPV Vaccine

Timeline of Symptoms Post Cervarix Shots

Lab Tests and Other Diagnostic Results

The Lesson I Learned too late

Cervarix Adverse Effects in Japan

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Our Story of Gardasil Injury

Diagnosing Post Gardasil Illness

Working with Researchers and Physicians for Post Gardasil Illness

Understanding the Side-Effects of Gardasil and Parent Activism in Denmark

Legislative Hearings on Post Gardasil Injury – A Victory for Parent Activism

More Signs of Progress from Parent Activism against Gardasil

Update

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What is Fatigue?

Mitochondria and Fatigue

Exercise and Mitochondrial Biogenesis

*Post Script

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