postural orthostatic tachycardia syndrome and gardasil

The Gardasil Experience in Denmark: One Family’s Story

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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.

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