POTS - Page 3

It Wasn’t by Choice: Dysautonomia

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It was just another sunny Malibu, California day back in April of 2006. My daughter and I had finished visiting Grandpa, and were on the road in front of Pepperdine University, where the sea gulls float in the air amidst the robust sea breeze. The smell of salt water permeated everything, and one could almost hear the crash of the waves, over and over again. My father had Alzheimer’s disease, so we were “regulars” at the Home. It was about 10 miles away, and we were headed home. POOF! In less than an instant of time, my truck was facing oncoming traffic as I heard a huge CRUNCH! Behind me, another truck was totaled in one large SMASH!

No one stopped. Blank, faceless people drove their cars to avoid hitting us, swerving to avoid hitting us. It was 2 pm on a Tuesday; they had nowhere to go.

I panicked and did the one thing that you are not supposed to do: get out of your car. I had to check on my daughter, my 3-year old baby, who was strapped tightly to her car seat. I was obsessive about that. I tried to stop the faceless drivers then, to help me get off the road, but they all drove by, glazed eyes. They had nowhere to go.

Our baby was fine. The driver had leaned over to stop her Chinese food from falling off the passenger seat, and lost control of her car as she pressed the gas instead of the brakes. There were no skid marks on the ground, and I never hit my head. We were ‘centrifuged’ and my brain suffered a torsion spin injury. We didn’t learn that for years. I felt fine on the scene. I watched the tow trucks take the other two cars away, wondering why they weren’t taking mine away, too. The rear axle was broken. The lady had been driving at a speed of about 90 mph.

People often stop me here and ask, “Did you get any money? Did you sue her?” Perplexed, I still fail to see the reasoning. So what if I got $70,000. I couldn’t walk; I couldn’t talk. For most of the nine years thereafter, I was bedridden.

Dysautonomia Diagnosis

I was confined to a wheelchair and couldn’t fit down a restaurant aisle. I couldn’t look at the shelves of yarn or I would throw up. The doctors thought I was malingering, until a cardiologist performed the Tilt Table Test and diagnosed me with dysautonomia. I was imbalanced and ataxic, and self-diagnosed a vertebral artery dissection. I went to Neurorehabilitation for weeks, and getting out of bed felt like I was a tremendous rock with no inertia, trying to move. Later, with the traumatic brain injury (TBI), I developed and self-diagnosed diabetes insipidus (DI), before I died of kidney failure. Even in the hospitals, the doctors asked me if I wanted valium, told me I was “too young to be a drug addict,” and asked me if I had a “psychiatric history.” The nurses would tell me to “just be a patient,” and then tell me “it’s a good thing you’re a doctor” when they tried to give me a beta-blocker to slow down my heart rate. My heart rate goes down to 35 beats/min every night. Slowing it down even more could have killed me during my sleep.

I lived on an IV PICC line for almost 4 years. What an oxymoron for an anesthesiologist to be constantly changing her own IV at home. It was a hard time. I got myself off the IV, by going down from 60 ml/hr to 59 ml/hr and so on. Finally, we pulled it out. The doctors did not realize that it could not stay in forever or I would die of an infection.

What I Learned: Fighting for Myself, Educating Others

What is the bottom line that I learned from all of this, being a doctor myself? Arguing with other doctors and surgeons for years? This is it: Women have to be knowledgeable about their own health. I had to fight for my diagnoses, each one of them, even the dysautonomia. It didn’t matter that I was a physician, my symptoms were downplayed and often ignored. Medications were offered that would have killed me. I had to fight. I had to become the expert in my own health. This was not an easy task when I was gravely ill but the choice was clear: fight back or die.

Eventually, I reached a point where I could at least write. My Stanford, USC, and Perelman University of Pennsylvania School of Medicine brain overflowed with medical information.

I did think straight on paper and in my own time (despite the doctors best attempts to convince me otherwise). So, in my trapped-in form of disarray, I learned about menopause, hormone replacement therapy (HRT), and common women’s health issues. I made it my mission to educate girls and women. Recently, I completed my fifth book, Archives of the Vagina: A Journey through Time. It starts from a girls’ First Period, and continues with thoughts Aristotle had on menstruation, other men who contributed to women’s age of consent for sexual intercourse. I pass it on to you as my life’s work to help women worldwide. If you are ill now, keep fighting.

Become the expert in your own health. Find your voice and when you can, help others find theirs too.

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This post was published originally on Hormones Matter on March 9, 2015.

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Adverse Reactions, Hashimoto’s Thyroiditis, Gait, Balance and Tremors

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Gait, tremors with adverse medication vaccine reactions

One of the things I most love about social media and health research is the opportunity to identify patterns of illness across different patient groups. Here is an example of finding research from one patient group, ThyroidChange, that likely spans many others (Gardasil injured, post Lupron Hashimoto’s, and Fluoroquinolone reactions – to name but a few) and offers clues to a perplexing array of symptoms. The research, is about a little known association between movement and balance disorders and Hashimoto’s thyroiditis: Ataxia associated with Hashimoto’s disease: progressive non-familial adult onset cerebellar degeneration with autoimmune thyroiditis.  Some background.

Hashimoto’s Disease

Hashimoto’s is the most common causes of hypothyroidism afflicting women at a rate of 10 to 1 compared to men. It is an autoimmune disorder in which antibodies attack the thyroid gland and destroy its ability to maintain normal thyroid hormone concentrations. The most common symptoms include: fatigue, muscle pain, weight gain, depression, cognitive difficulties, cold intolerance, leg swelling, constipation, dry skin. If left untreated, goiter – a swollen thyroid gland, appears. If left untreated for an extended period, cardiomyopathy (swelling of the heart muscle), pleural (lung) and pericardial (heart) effusion (fluid), coma and other dangerous conditions develop.

Hashimoto’s and Cerebellar Degeneration

A little known risk in Hashimoto’s is cerebellar degeneration. The cerebellum is the cauliflower looking section at the base of the brain that controls motor coordination – the ability to perform coordinated tasks such as walking, focusing on a visual stimuli and reaching for objects in space. The walking and balance disturbances associated with cerebellar damage or degeneration have a very distinct look, a wide gait, with an inability to walk heel to toe. Cerebellar ataxia looks like this:

In recent years, cerebellar involvement in attention and mood regulation have also been noted. The physicians reporting the Hashimoto’s – ataxia connection present case studies of six patients with Hashimoto’s disease, presumably controlled with medication and a progressive and striking shrinkage of the cerebellum (see report for MRI images) along with progressively debilitating ataxia (walking and balance difficulties) and tremors. Here’s where it becomes interesting.

Hashimoto’s: Medication Adverse Reaction and Misdiagnosis

Hashimoto’s disease is prevalent in our research into medication adverse reactions for Gardasil and Cervarix and Lupron, with some indications it may develop post Fluoroquinolone injury as well. The symptoms are difficult to distinguish from other neurological and neuromuscular diseases such as chronic fatigue syndrome, fibromyalgia, multiple sclerosis and an array of psychiatric conditions, and so Hashimoto’s often goes undiagnosed or is misdiagnosed and mistreated for some time.

Hashimoto’s, Demyelination and Cerebellar Damage

In some of the more severe adverse reactions to medications and vaccines that would lead to Hashimoto’s, the tell tale cerebellar gait disturbances have been noted and documented, along with a specific type of tremor (discussed below).

Research from other groups shows a strong relationship between thyroid function and myelin/demylenation patterns in nerve fibers in animals. Specifically, insufficient T3 concentrations demyelinates nerve axons, while T3 supplementation elicits myelin regrowth. Myelin is the white sheathing, the insulation that protects nerves and improves the electrical conduction of messages in sensory, motor and other neurons. Like co-axial cable in electrical wiring, when the protective sheathing is lost, electrical conductance is disrupted. The early symptoms of a demyelinating disease neuromuscular pain, weakness, sometimes tremors. These can be misdiagnosed as multiple sclerosis, fibromyalgia, chronic pain, when in reality, the culprit is a diseased thyroid gland.

Back to the Cerebellum

The cerebellum is a focal point of white matter axons – myelinated sensory and motor nerves. The cerebellum is where input becomes coordinated into motor movements or movement patterns. White matter damage in the cerebellum causes cerebellar ataxia, the movement and balance disorders displayed above. Hashimoto’s elicits white matter disintegration. Adverse reactions to medications and vaccines can elicit autoimmune Hashimoto’s disease. See the connection?

The Thiamine – Gut Connection

It gets even more interesting when we add another component of systemic medication adverse reactions – nutritional malabsorption, specifically thiamine deficiency. Almost across the board, patients with medication or vaccine adverse reactions report gut disturbances, from leaky gut, to gastroparesis, constipation, pain and a myriad of other GI issues that make eating and then absorbing nutrients difficult. Gut issues are common in thyroid disease too.

As we learn more, and as individuals are tested, severe nutrient deficiencies are noted, in vitamin D, Vitamin B1, B12, Vitamin A, sometimes magnesium, copper and zine. We’ve recently learned of the connections between Vitamin B1 or thiamine deficiency and a set of conditions affecting the autonomic nervous system called dsyautonomia or Postural Orthostatic Tachycardia Syndrome (POTS) linked to thiamine deficiency in the post Gardasil and Cervarix injury group. It may be linked to other injured groups as well, but we do not know yet.

Thiamine and Cell Survival

Thiamine or vitamin B1, is necessary for cellular energy. It is a required co-factor in several enzymatic processes, including glucose metabolism and interestingly enough, myelin production (the Hashimoto’s – cerebellar connection). We can get thiamine only from diet. When diet suffers as in the case of chronic alcoholism, where most of the research on this topic is focused, or when nutritional uptake is impaired, thiamine deficiency ensues. Thiamine deficiency can elicit cell death by three mechanisms:

  1. Mitochondrial dysfunction (reduced energy access) and cell death by necrosis
  2. Programmed cell death – apoptosis
  3. Oxidative stress – the increase in free radicals or decrease in ability to clear them

Thiamine deficiency in and of itself can elicit a host of serious health symptoms. The cell death and disruption of cellular energy balance can be significant and lead to a totally disrupted autonomic system.

Thiamine and Myelin Growth

Add to those symptoms, the fact that thiamine is involved in the growth myelin sheathing around nerves, and we have a whole host of additional neuromuscular symptoms masking as fibromyalgia, multiple sclerosis, chronic fatigue. Like with MS, limb and body tremors are noted in dysautonomic syndromes such as POTS. (Video of POTS tremors, note the uniqueness of the POTS tremor and the similarity between it and the foot tremor shown above along with cerebellar ataxia).

Let thiamine deficiency continue unchecked for period and we get brain damage, as white matter – the myelin disintegrates in the brainstem, the cerebellum and likely continues elsewhere. One of the most prominent areas of damage in thiamine deficiency, is the cerebellum, and hence, the cerebellar ataxia (movement disorders) noted in chronic alcoholics who are thiamine deficient, but also observed post medication or vaccine adverse reaction.

The Double Whammy on Myelin and Cerebellar Function

In the case medication or vaccine adverse reactions, particularly those that reach the systemic level, we have a double whammy on myelin disintegration: from a diseased thyroid gland and a diseased gut. Hashimoto’s and the reduction of thyroid hormones, particularly T3, impairs nerve conduction by shifting from a constant and healthy remyelinating pattern to one of demyelination, while the lack of thiamine further impairs myelin regrowth, because it is a needed co-factor. Both deficiencies affect peripheral nerves, but both also hit the brainstem, the cerebellum and likely other areas within the brain.

Take Home Points

The science of adverse reactions is new and evolving and much of what I am reporting here remains speculative. However, it has become abundantly clear through our research that to address medication adverse reactions or vaccine adverse reactions in a simplistic fashion, by region, or in an organ specific manner, is to miss the broader implications of the compensatory disease processes that ensue. Moreover, to look for symptoms of adverse reactions simply by the drug’s mechanism of action and/or by the standard outcome variables listed in adverse event reporting systems, again misses the complexity of the human physiological response to what the body is perceiving as a toxin. I believe that the entire framework for understanding the body’s negative response to a medication must be shifted to a much broader, multi-system, and indeed, multidisciplinary approach. In the mean time, we will continue to collect data on adverse reactions and offer our readers points of consideration in their quests for healing. I should note, that finding these connections is entirely contingent on the input our community of patients and health activists, both via the personal health stories that so many of you have been willing to share and the data we collect through our research. You know more about your health and illness than we do.

What we Know So Far – Tests to Consider

If you have had an adverse reaction to a medication or vaccine and neuromuscular difficulties, like pain, numbness, motor coordination problems, tremors etc., consider testing for Hashimoto’s thyroiditis. Also, consider thyroid testing when fatigue, depression, mood lability (switching moods), constipation, attentional and focus difficulties are present. In fact, I would consider thyroid testing, specifically for autoimmune thyroid disease like Hashimoto’s, as one of the first disease processes to rule out.

If you have had an adverse reaction to a medication that includes gut disturbances, consider the possibility that you are deficient in key micronutrients such as Vitamin D, the B’s, Vitamin A, magnesium, copper, zinc. And given the modern diet, consider that you were probably borderline deficient even before experiencing the adverse reaction. These nutrients are critically important to health and healing (and no, I do not have an association with vitamin companies or testing companies). Some tests for these nutrients are more accurate than others, so be sure to do your homework first.

If you have symptoms associated with autonomic systems dysregulation such as those associated with POTS, dysautonomia and its various permutations, consider thiamine testing, especially, transkelotase testing.

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Image Source: Pixabay.

Postscript: This article was published originally on Hormones Matter on October 15, 2013. 

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

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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.

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Hormones MatterTM 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.

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The Gardasil Experience in Denmark: One Family’s Story

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Sara and Charlotte Nielson

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 MatterTM 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.

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Post Gardasil POTS and Thiamine Deficiency

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Autonomic nervous system

On July 8th 2013, I received an e-mail from a mother of a 17-year old daughter who had received Gardasil vaccination in 2008 resulting in a severe reaction. Two weeks after the second injection she began to experience a “flu-like” episode that continued for about a week and was followed by facial swelling, streptococcal infection, double ear infection and a diagnosis of mononucleosis. It was initially concluded that this was coincidental, not due to the vaccination. From then on she suffered from Postural Orthostatic Tachycardia Syndrome ( POTS), severe edema and “digestion issues which have been constant since”. POTS is a multi-symptomatic disease of the lower brain that affects many aspects of brain/body control mechanisms. She reported that “30,000 girls (and some boys) have been affected by the vaccine” and of those of which she was aware,“ the majority have POTS and trouble metabolizing sugar and carbs”.

Because of the persistent edema and digestive problems, my informant had done her own research and concluded that her daughter’s symptoms were due to thiamine (vitamin B1) deficiency. She found my name in connection with this subject and requested my help. There is a blood test, known as erythrocyte (red cells) transketolase that is specific for identifying thiamine deficiency, so I suggested that this be done. It was strongly positive, proving TD. This led to the test being done on another Gardasil affected girl and this was also strongly positive.  Most of the affected girls known to her had POTS. Some had mitral valve prolapse (MVP).  About twenty five percent of POTS patients are disabled.  The symptoms often follow a virus infection. It is one of many conditions classified as dysautonomia and this includes beriberi, long known to be due to thiamine deficiency.

Dysautonomia, often associated with MVP, affects the lower brain controls of both branches of the autonomic (automatic) nervous system (ANS) that enable our adaptation to the constant changes in environment. For example, one branch, known as the sympathetic system, accelerates the heart and the other, called the parasympathetic, slows it. We sweat when it is hot and shiver when it is cold, both automatically initiated by the sympathetic branch of the ANS.

In the early stages of beriberi the ANS is unbalanced, so that either the sympathetic or parasympathetic, normally working in synchrony, dominates the reaction, adversely affecting blood pressure, pulse rate and many other adaptive mechanisms, like POTS.  It can be seen that the patient with POTS or beriberi is essentially maladapted and is unable to adjust bodily systems to meet environmental changes. Edema (swelling in parts of the body), a cardinal feature of beriberi, supported a diagnosis of thiamine deficiency in this mother’s daughter. Also, Gardasil is a yeast vaccine and an enzyme called thiaminase, whose action destroys thiamine, is known to be in the yeast. Thiaminase disease has been reported in Japan in association with dietary thiamine deficiency.

We know from the history of beriberi that exposure to the stress of ultraviolet light (sunlight) sometimes “triggers” the first symptoms of the disease when thiamine deficiency is marginal, but not severe enough to cause symptoms. Other stress factors (virus, inoculation, injury) can do the same. In effect, diet may cause an individual to be in a state of marginal vitamin deficiency. A mental or physical stress factor automatically induces a need for energy to meet this stress. If cellular energy is insufficient to drive the  mechanisms by which an adaptive adjustment is required, it results in a maladaptive response.

The lower brain, where the ANS control mechanisms are situated, is particularly sensitive to thiamine deficiency, equivalent to a mild to moderate degree of oxygen deprivation. The commonest cause of thiamine deficiency in industrial nations is alcohol, but it is also known that sugar consumption will increase the need for thiamine. Beriberi has recently been reported in Japan in seventeen adolescents consuming carbonated soft drinks. The social life of adolescents may thus increase the risk from an inoculation that might otherwise be less threatening.

The statistics on sugar ingestion (150 pounds per person per year) suggests that marginal TD is common. The report of a “difficulty in metabolizing sugar and carbs” may be highly relevant. One of the questions asked by parents of the affected girls known to my informant is why did the vaccine seem to “pick off” the most intelligent and athletic individuals. The answer must be that the higher the IQ, the more is cellular energy required by the brain. Sugar, even at social levels of consumption, may be a greater risk for them.

It is important to understand that there are multiple factors that have to be taken into account in solving the cause of this disaster. The “fitness” of the individual implies her adaptive ability in biochemical terms, not her athletic or student prowess. Dietary indiscretion may or may not enter the equation and depends on individual sensitivity to food substances as well as the ratio of calories to the necessary vitamins for their processing in the body. The stress factor, the case in discussion being Gardasil, may be more or less stressful in its own right, perhaps related to batch number or commercial process. Lastly the genetics of an individual always enters the equation. These three factors, Genetics, Stress and Nutrition can be seen as three interlocking circles, all of which overlap at the center. Each circle must be evaluated in its contribution to the ensuing result.

Publications and resources from Dr. Lonsdale:

  1. A Review of the Biochemistry, Metabolism and Clinical Benefits of Thiamin(e) and Its Derivatives
  2. Treatment of autism spectrum children with thiamine tetrahydrofurfuryl disulfide: A pilot study.
  3. Thiamine
  4. Asymmetric functional dysautonomia and the role of thiamine.
  5. Exaggerated autonomic asymmetry: a clue to nutrient deficiency dysautonomia.
  6. Oxygen – the Spark of Life. Dr. Lonsdale’s blog.

Resources for Understanding Thiamine Deficiency

Molecular Mechanism of Thiamine Utilization

Participate in Research

Hormones MatterTM 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.

To take one of our other Real Women. Real Data.TM surveys, click here.

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

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Post Gardasil Thiamine Deficiency: A Mother’s Quest for Answers

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My daughter has struggled since she got her second Gardasil shot in December 2008. Even though she has improved immensely and was finally able to return to college after missing 3 years, she still had some problems including issues with swelling/edema, gut, thyroid, and temperature regulation.

In July, I came across a 2008 article written by Leslie Botha about the Gardasil side-effects that were being reported at the time.  A woman who was knowledgeable about thiamine deficiency because it runs in her family read the article and realized that the side effects of Gardasil were similar to thiamine deficiency. She speculated in her post that the yeast in the vaccine, or possibly the manufacturing process, might be responsible for the beriberi type reactions people were having.

The more I read about beriberi, the more I became convinced that this was causing many of my daughter’s problems. She had all the symptoms of thiamine deficiency with cardiovascular involvement including Postural Orthostatic Tachycardia Syndrome (POTS), chest pains, edema, sleep disturbance, abdominal discomfort, and  trouble digesting and processing foods, especially carbs.

I contacted Dr. Lonsdale, a long-time expert in Thiamine Deficiency, and he has been immensely helpful and willing to share his knowledge. After an erythrocyte transketolase test confirmed that my daughter was extremely thiamine deficient, she started taking a form of thiamine that crosses the blood brain barrier.  In the two months she has been on the supplement her lab tests show a substantial improvement in several areas including swelling, ability to detox, and hormone and thyroid levels. Her energy level has also improved.

Over the past five years we have tried a wide gamut of treatments including hyperbaric oxygen therapy, IV’s, supplements, infrared sauna, thyroid medications, low dose naltrexone, UV blood irradiation, homeopathic and chiropractic treatments, acupuncture and countless others. Although she improved nothing fully explained the root cause of her symptoms until I came across thiamine deficiency and talked with Dr. Lonsdale. Although he says it can take months to treat thiamine deficiency, we have already seen many good things happen.

Participate in Research

Hormones MatterTM 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.

To take one of our other Real Women. Real Data.TM surveys, click here.

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

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