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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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Marketing the HPV Vaccines to Prevent Cervical Cancer

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July Wilymen

HPV vaccines have been promoted to the public as a ‘vaccine to prevent cervical cancer’ (a non-infectious disease) yet these vaccines have never been demonstrated to prevent any cervical cancer. Six years after the HPV vaccine was implemented globally, Ian Frazer, the Australian inventor of the vaccine, stated ‘HPV vaccines may prevent cervical cancer.’ This is why the health department only refers to this vaccine as an ‘HPV vaccine’. In 2007 when the vaccine was approved for all women in many countries it was also known that there were 15 plus high-risk HPV strains that were associated with causing cervical cancer. Yet the HPV vaccine, Gardasil®, only covered 2 strains that were associated with cervical cancer – HPV 16 and 18 – the other 2 strains in the vaccine were associated with causing genital warts. This means there are 13 other high-risk HPV strains that are not covered in the Gardasil® vaccine and this is why vaccinated women will still require regular Pap screening.

Low Risk for Cancer

Women were also not informed that an infection with HPV is harmless and does not cause disease – cancer or warts – unless other co-factors are also present. These co-factors are not prevalent in developed countries. This is why Ian Frazer stated in 2005 ‘80-90% of cervical cancer occurs in the developing countries’. Not countries like Australia, Europe and the US. These countries have a low risk of cervical cancer. In Australia the death rate to cervical cancer when the vaccine was introduced in 2007 was 1.7 women /100,000. Pap screening combined with surgery is effective (9 out of 10 cancers) in detecting and preventing cervical cancer – and Pap screening will still be needed by vaccinated women. This means that it is not cost-effective for governments to be subsidizing the HPV vaccine when we already have an effective detection and prevention (surgery) in place that is virtually risk free.

HPV is Common

HPV is a common infection in all women. 80% of healthy women will have an HPV infection during their lifetime but this is harmless unless the co-factors are present that are necessary for the development of disease. In a developed country the risk of dying from cervical cancer is 0.25% but in developing countries it is 1.5%. Whilst the pharmaceutically funded marketing campaign informed women of the high incidence of HPV infection (80%) in women it did not inform women that the majority of these women are not at risk of developing cervical cancer or warts. The Australian Government states that the majority of women with an HPV infection are not at risk of cervical cancer.

This means that a drug has been recommended to all women but the majority of these women are not at risk of disease. However, many are now at risk from the side-effects of the vaccine. The government has not reduced the risk of disease with this policy but possibly increased the risk – at great expense. HPV vaccines are the most expensive vaccine on the market – $Au450 – yet the risks and benefits of this vaccine are still undetermined. The clinical trials had not been completed when the vaccine was approved for the market by the FDA in 2006. The safety of this vaccine has never been established.

The HPV vaccine had not been tested using an inert placebo in the unvaccinated group. The Merck funded clinical trial used aluminium adjuvant as the placebo in the unvaccinated group – this is a substance that is linked to causing autoimmune diseases and hypersensitivity. Comparing the vaccinated group to a group that is given aluminium adjuvant does not provide information on the harm this vaccine will cause in healthy people. The most frequent adverse reactions caused by this vaccine are neurological reactions such as seizures, convulsions, paralysis, tics, encephalopathy and thyroiditis. Many deaths have also been linked to the vaccine.

There were 21,265 adverse events reported to the US FDA and CDC alone up to September 2012. Many of these included permanent chronic illness and death. In 2013 the governments of India and Japan are no longer recommending this vaccine to the community.

This vaccine has only been trialled by the manufacturer of the vaccine, Merck, and it was promoted to the public by a campaign that was designed and funded by the manufacturer of the vaccine. In 2006 Merck won the ‘Brand of the Year’ for Gardasil® for creating a market out of thin air for this vaccine.

For the full report published in Infectious Agents and Cancer: HPV vaccination programs have not been shown to be cost-effective in countries with comprehensive Pap screening and surgery. Judy Wilyman’s research is being presented at the University of Wollongong, Faculty of Law, Humanities and the Arts, School of Social Sciences, Media and Communication.

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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Gardasil Cervarix Online Study Continues – Participate Now

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Gardasil Cervarix HPV Vaccine Survey

Controversy surrounds the HPV vaccines, Gardasil and Cervarix. Since their release, the vaccine industry, the media and medical societies have touted the safety and success of the vaccines in preventing or reducing HPV viral infections and thus, in preventing cervical cancer. Patient groups, mom’s of vaccine injured girls and anti-vaccine groups on the other hand, argue loudly that the rate and severity of serious adverse events are seriously under-reported by industry and the proof that these vaccines prevent or reduce cervical cancer is lacking. Even one of the lead developers of the vaccine, Diane Harper has come out against it.

Somewhere in the middle is the Vaccine Adverse Event Registry (VAERS), where only 1-10% of a very limited range adverse events are reported. Even with the limited reporting to VAERS, the severity and frequency of adverse events is growing and should not be ignored. Data collected from VAERS indicates a serious adverse event rate 4.3 per 100,000 doses of Gardasil. Serious adverse events are those that cause death or are life threatening, require hospitalization, cause persistent disability or incapacity and/or require medical treatment to prevent permanent impairment or damage. This is compared to a risk of cervical cancer of 7.9 per 100,000 and death from cervical cancer at 2.4 per 100,0000 cases in the US.

Considering the severity of the reported adverse reactions and the noted adverse events reporting rate of less than 10% of all cases, having more credible and complete data about true severity and prevalence of said reactions as well as more detailed data about who is at risk for those adverse events is critical.

As a parent, a researcher and the founder of Hormones MatterTM, I decided to do something about the lack of data in this and other areas of women’s health. As part of the Real Women, Real Data series,  The Gardasil Cervarix HPV Vaccine Survey was launched In May of 2013.  It is a comprehensive, online study of Gardasil and Cervarix side-effects and adverse events. The study will run until a study sample of 1000 is reached. The goal is to provide a more accurate and unbiased look at the rate, range and severity of side-effects and adverse events associated with the HPV vaccines, Gardasil and Cervarix.

Take a survey. Share a survey. Suggest a survey.

We need your help to gather these data.  Please take this survey, if have had either vaccine – whether you experienced any side-effects or not. Understanding who is at risk and who is not, is very important. Share the survey link with your friends, sisters, colleagues and anyone you know who has been given the HPV vaccine. Please post it on your Facebook pages and share on Twitter, Linkedin, Reddit and other social media. Write about and re-post this link on your blogs. Anything you can do to spread the word is appreciated. We will need at least a thousand women to find the connections.

It is up to us to protect our daughters. Understanding this vaccine is one way to do that.

Purpose the Gardasil – Cervarix Survey

Women and their physicians need more data about the side-effects of the HPV vaccines, Gardasil and Cervarix. There is a lack of data about who is at risk for adverse events and whether certain pre-existing conditions increase one’s risk for an adverse event. There is also a lack of data about the long term health effects of these vaccines. The purpose of this survey is to fill that data void; to learn more about the risks for and nature of adverse events associated with each of the HPV vaccines, Gardasil and Cervarix.

Who Should Take the Gardasil Cervarix HPV Vaccine Survey?

Girls or women who have been given either vaccine or the parents or other family members of young girls given the vaccine.

We are not currently collecting data on the adverse reactions for men and boys, but intend to launch a separate survey to tackle that population.

How Long Does the Gardasil Cervarix HPV Vaccine Survey Take?

This is a long survey. We felt it was important to assess the full depth, breadth, onset and severity of adverse reactions in order to give parents and women the data they need to make informed medical decisions. This necessitated a longer than desired survey. We estimate it will take approximately 20-30 minutes to complete the survey.  We hope, given what is at risk, survey respondents will take the time to complete the entire survey.

Is the Survey Anonymous and Secure?

Yes. We do not collect personal identifying information and the survey is hosted with SSL encryption using a verisign certificate Version 3, 128 bit encryption.

How Will the Data be Used?

To inform future research and women’s health decision-making.

Who is Conducting this Research?

Researchers from LucineTM, Hormones MatterTM. For more information on Lucine, click here. For more information about Hormones MatterTM , click here.

What Can I Do To Help?

Our organization 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. Get involved and help us prove that hormones matter and that women’s health data matter. Become an advocate, spread the word about our site, our research and our mission. Join our team. Write for us, partner with us, help us grow. For more information contact us at: info@hormonesmatter.com.

To take the Gardasil Cervarix HPV Vaccine Survey, click here.

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.

Thank you in advance for your help.

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Gardasil Injured

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I am the mother of my precious little girl Alisa (pictured). Though she is not little anymore, she will always be my princess. Alisa grew up healthy, active, and happy. She enjoyed trying new things and being around others. She loved photography, fishing, bike riding, boating, hiking, martial arts, music (especially her violin), and all types of animals. In high school she enjoyed her photography in which she won awards for. She was a tattoo assistant for a Washington State award winning tattoo artist and was learning the trade. She was on the swim team and loved swimming. Being a concerned mother I was fearful for her getting cervical cancer. We were being bombarded with commercials and ads for this vaccine for girls to be one less. When they offered the vaccine to my daughter I said sure. They never went over side effects or problems, so I figured it was a safe one. That day is when our nightmare began.

August 14, 2007, the first vaccine shot ( lot # 0384U) – Alisa went home with her injection site itchy, swollen, red, and sore. She was not feeling well, like flu. I sent her to bed and she was home sick for a couple days. The doctors office said that was normal. I did notice she was complaining about sore joints and muscles in the months to follow and she was napping more with headaches. I just blamed it on growing pains.

November 14, 2007, second vaccine shot (lot # 0927U) – Alisa was not thrilled about having the shot again. She was so scared she was going to feel crummy again. Sure enough the injection site was itchy, sore, red and this time the area swelled up a large area. She went home and went to bed. She was out of school again down with flu like symptoms for days. Slowly she came out of her slump but was so sore throughout her body. Sore muscles and joints, complained of headaches. She was exhausted all the time. It was difficult for her to muster the strength to do things. She took to her computer and was playing games online with friends.

Happy Valentines Day to you….February 14, 2008 (lot# 12APR10). This time she was flat terrified and cried all the way to the doctors begging me not to make her get the vaccine. This breaks my heart because I remember this day too vividly. I kept telling her it was the last shot and we don’t want to make the other two shots go without the final one. I kept telling her it was for the best. We left the office and she was throwing up, shaking, feverish, and the usual symptoms of sore muscles and joints, a pounding headache, exhaustion. She was down for over a week recouping from the shot.

After the 3 shots I put the series out of my mind. The only time that I remember the shots was EVERY visit to the hospitals and Dr.s offices, when they would ask if Alisa had all her vaccines. EVERY time I answered I said, “yes she has even had the Gardasil series.” Not one doctor put this together. The cause to her illnesses were put together by good friends of the family.

Many of you may wonder why I continued taking her in for the vaccine series.  I called the doctor’s office about her reactions each time, and they said it was completely normal to have those “minor” reactions: swelling, itching, light headed, and dizzy. After all it is a shot!!!! They also said at the doctor’s office, NO ONE has ever had the flu like symptoms from the vaccine, so she must have a touch of the flu. When the third dose came around they stressed to us that the other two shots of the vaccine would have been useless without the third. I trusted our family doctor of 15 years. He had never steered us wrong and always took care of us – treated us honestly and fair. I grew up with my grandfather being a doctor and most of my aunts being RN’s, I worked in the medical community. I trusted them….It never dawned on me they could be wrong.

Alisa continued on with her life but lost some of her spunkiness. She no longer had tons of energy. She slept a bunch, stopped her swim team, and spent more time in her room on the computer. She said her body hurt and didn’t feel like doing anything.

There are so many doctors appointments and hospital visits in this time frame. I have requested all her records from the hospitals, clinics, and her primary care provider (he has discharged her from his office).

October 2009, another visit to the emergency department with eye problems. She was having bloody discharge and pressure behind her right eye. Alisa was having problems with slurred speech,  headache and facial droop. They accounted it to pink eye and we begin treatment. They recommend we contact a neurologist and see the doctor.

After seeing the neurologist finally we were sent home with the idea of further testing later. Later that night the neurologist called recommending we take her back to the hospital for further testing. October 2009, off to the hospital again. By this time, Alisa was admitted into children’s hospital with the following symptoms: Bells Palsy, migraine, right sided weakness, blurry vision, tinnitus, balance problems,  numbness right side, unable to walk, problems swallowing, fatigue, joint pain, difficulty in opening mouth. They were testing for stroke and other unknown causes to this problem. She endured CAT scans, MRI’s, Lumbar punches. Over the next week she continued to get worse. Of course the psychiatric doctors were sent in to ensure she wasn’t an abuse victim. We didn’t know yet then she was abused by the pharmaceutical company. She was discharged without a cause to the problem.

This was Alisa’s senior year in high school, though the first semester she was in the hospital and a tutor came in a few times a week to drop off and pick up homework. The doctors released her to return to school but the noises, medications, and lights caused her headaches to pound and she was struggling with anxiety issues. With only one semester until graduation she dropped out of school. It was too much to handle. (She tested and passed her GED in Dec. 2011).

Over the following years Alisa has had this happen 2 more times. Right side paralysis, wheelchair, learn to walk with a walker again, and now she gets so exhausted she uses the wheelchair to save her energy.

Her side effects seem to increase in intensity and keep adding in numbers. So far she struggles with the following issues: leaky gut syndrome, pins and needles in extremities, dizziness, bleeding gums, toothaches/teeth changes, brain fog, sensitivity to chemicals, chest pains, constipation, dehydration,  enlarged liver, sound sensitivity w/anxiety, extreme pain in the tailbone area, fainting, fever and blisters, fibromyalgia, Guillain-Barre syndrome, autistic-like symptoms, hand/leg weakness, back pain, hot//cold intolerance, trouble sleeping, itching, joint pain,  knee pain, light sensitivity, blindness, depression, personality changes, anxiety/panic attacks, loss of bladder control, bladder issues, muscle aches and spasms, muscle tension, tumor, paleness, chronic fatigue syndrome, paralysis, pneumonia, severe nerve pain, shortness of breath, slurred speech, smell sensitivity, diarrhea, sore throat, stomach pain, swelling/edema, tremors hand and/or leg, random twitching of extremities, bloating, uterine spasms, hair loss, urinary tract infections (UTI), kidney issues, vision loss (temporary/permanent), vision  problems, dyslexia, hallucinations, vomiting blood, stomach ache, nausea, rashes, appetite loss, weight gain or loss ( 20-30lbs).

Alisa is unable to anything without supervision. Showering requires a shower chair. She has to be checked on constantly since her seizures come without notice. She becomes so disoriented after some of the seizures, she wanders off.

Alisa was once firm in her beliefs about anti-smoking and drug use, but has now become a medical marijuana patient. This is the only thing that takes an edge off the pain. She is never pain free but the MMJ makes it more tolerable. Unfortunately this pain relief isn’t covered by medical insurance so the $1200.00 a month pain control comes out of the pocket book.

This vaccine has dramatically changed our family’s life.  Alisa fights for her life everyday. It is even more difficult to not be able to help her or find a cure for her symptoms. It is heartbreaking to watch your child suffer in horrible pain and not be able to help. I feel guilty because my child is suffering because of a choice I made. A choice I thought was to help her and instead has disabled her. I wish someone would have told me. Please help spread the word about this vaccine. Tell everyone you know about the dangers of the vaccine. Educate before you vaccinate. This vaccine is harming thousands of girls, and now boys. The vaccine needs to be taken off the market. The numbers of children affected is rising everyday.

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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Rolling the Dice with the HPV Vaccine

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If you are the parent of a minor child, you most likely have heard about one or both of the HPV (human papillomavirus) vaccines currently on the market. A trip to the pediatrician’s office with a teen or pre-teen is typically where the first discussion takes place. The doctor will dutifully recite information. HPV is the most common sexually transmitted virus in the United States. As a parent, that gets your attention. They go on to further state that the vaccine will protect your child from the strains of the virus that most commonly cause cervical cancer in females and genital warts in males. These are both very uncomfortable subjects for most of us. However, as parents, we want to protect our children at all costs from anything and everything possible.

As with any vaccine, the parent is provided a pamphlet or sheet containing the standard information: what is HPV, why get vaccinated, who should get vaccinated, and the obligatory safety information. After reading the information and listening to the doctor’s recommendation explaining that the vaccine is very safe (and it seems to be for most patients), many parents make the decision to have their child protected. I was one of them. I rolled the dice and sadly, my daughter lost.

The information pamphlet states that the vaccine has been used in the United States for about six years and has been very safe. You are warned about pain and swelling of the injection site, fever, headache, and the most troublesome side effect, fainting. The patient is required to remain in the doctor’s office for a period of time after the injection as a safety precaution.

What the information pamphlet does not address is that over 29,300 injuries and 136 deaths have been reported following HPV vaccines. Vaccine injury reporting is voluntary in our country and the Center for Disease Control acknowledges that adverse events, as they are called, may be 10 to 100 times greater than those actually reported. Do the math.  The reported numbers seem very significant to me, but I am the mother of one of the injured. I trust we can all agree that the actual numbers could be staggering.

The list of new medical conditions being reported following the HPV vaccine is also staggering, I counted 144 conditions. My daughter has 31 of them. She suffers mainly from neurological, autoimmune, and adrenal issues. The worst offender is a migraine-like headache that has been present every day, all day and night for more than a year. The neurologist refers to it as migraine-like because all the symptoms are there yet it does not respond to any medication. Her immune system has also been compromised. She suffers from leaky gut syndrome and now has sensitivity to 20 common foods. Dealing with this for more than a year now has taken a toll on her 16-year-old body. Chronic pain has lead to depression and adrenal fatigue. All of this in a girl who had what was described as an “unremarkable’ medical history prior to vaccination.

While my daughter’s symptoms are grave, she really is one of the lucky ones.  Many of the injured suffer from daily seizures or even multiple seizures per day.  My daughter does not. For that, I am thankful every day. Having a child in crisis is hard. Having a child with a medical crisis that medical doctors do not know how to reverse is even more difficult. My decision to protect her, in fact, caused her great harm.

Choosing to give your child a vaccination is a personal decision, but it is one that should not be taken lightly. Do your own research, do not simply rely on the information pamphlet, it is, after all, written by the vaccine manufacturer. I learned this lesson the hard way.  When you decide if you will roll the dice, please, for the sake of your child, remember this:  Education conquers fear and knowledge is power.

Gardasil Cervarix HPV Vaccine Research

Hormones MatterTM is conducting a large scale assessment of symptoms and adverse reactions associated with the HPV vaccines, Gardasil and Cervarix. If you, your daughter, other family member or friend have had either of these vaccines, we encourage you to take this important survey. The data collected with help delineate the range, severity, frequency and onset of health symptoms associated with Gardasil and/or Cervarix. For more information or to take the survey: The Gardasil Cervarix HPV Vaccine Survey.

 

 

 

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The Gardasil Cervarix HPV Vaccine Survey

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Introducing the third in our series of Real Women. Real Data.TM surveys: The Gardasil Cervarix HPV Vaccine Survey.

At Hormones MatterTM we have covered the Gardasil story many times. We have been struck by the depth and breadth of adverse events experienced by young girls and women who have been given the HPV vaccines. We are concerned by the lack non-industry sponsored data regarding the range, frequency and severity of adverse events. We aim to solve that problem and we need your help.

About Gardasil and Cervarix

Individual reports abound about the dangers of the HPV vaccine, Gardasil. Less is known about Cervarix. Data collected from Vaccine Adverse Event Reporting System (VAERS) and reported on here, indicates a serious adverse event rate 4.3 per 100,000 doses of Gardasil. Serious adverse events are those that cause death or are life threatening, require hospitalization, cause persistent disability or incapacity and/or require medical treatment to prevent permanent impairment or damage.  This is compared to a death rate of cervical cancer, which according to the WHO stands at 1.7 per 100,0000 cases in the US.

What we don’t know is who is most at risk for these adverse events. Are there particular pre-existing conditions, medications or even menstrual cycle triggers that increase the risk for an adverse event?  What is the full range of side-effects and adverse events, short term and long term? Is either vaccine more risky than the other?  These are questions that must be addressed so that as medical consumers we can make educated decisions about vaccine safety.

We need your help to gather these data.  Please take this survey and share it with your friends, sisters, colleagues and anyone you know who has been given the HPV vaccine. Please post on your Facebook pages and share on Twitter, Linkedin, Reddit and other social media. We will need thousands of women to find the connections. That requires crowdsourcing and sharing amongst women.

Purpose the Gardasil – Cervarix Survey

Women and their physicians need more data about the side-effects of the HPV vaccines, Gardasil and Cervarix. There is a lack of data about who is at risk for adverse events and whether certain pre-existing conditions increase one’s risk for an adverse event. There is also a lack of data about the long term health effects of these vaccines. The purpose of this survey is to fill that data void; to learn more about the risks for and nature of adverse events associated with each of the HPV vaccines, Gardasil and Cervarix.

Who Should Take the Gardasil Cervarix HPV Vaccine Survey

Girls or women who have been given either vaccine or the parents or other family members of young girls given the vaccine.

We are not currently collecting data on the adverse reactions for men and boys, but intend to launch a separate survey to tackle that population.

How Long Does the Gardasil Cervarix HPV Vaccine Survey Take?

This is a long survey. We felt it was important to assess the full depth, breadth, onset and severity of adverse reactions in order to give parents and women the data they need to make informed medical decisions. This necessitated a longer than desired survey. We estimate it will take approximately 20-30 minutes to complete the survey.  We hope, given what is at risk, survey respondents will take the time to complete the entire survey.

Is the Survey Anonymous and Secure?

Yes. We do not collect personal identifying information and the survey is hosted with SSL encryption using a verisign certificate Version 3, 128 bit encryption.

How Will the Data be Used?

To inform future research and women’s health decision-making.

Who is Conducting this Research?

Researchers from LucineTM, Hormones MatterTM. For more information on Lucine, click here. For more information about Hormones MatterTM , click here.

What Can I Do To Help?

Our organization 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. Get involved and help us prove that hormones matter and that women’s health data matter. Become an advocate, spread the word about our site, our research and our mission. Join our team. Write for us, partner with us, help us grow. For more information contact us at: info@hormonesmatter.com.

To take the Gardasil Cervarix HPV Vaccine Survey, click here.

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.

Thank you in advance for your help.

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One Less After Gardasil

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Imagine for a moment having an outgoing, vibrant daughter, just turned 21 years old – her whole life ahead of her. She’s a bright, outgoing, athletic, college student, kind and compassionate. She has hopes and dreams just waiting to be fulfilled. No parent could ask for more. All parental bias aside, this was our daughter, Brittney, before Gardasil.

When Brittney received her first Gardasil injection in June of 2007, she was told that the only real risk involved was the possibility of her having a small seizure shortly after the shot was administered. She did not react within the 15-minute window, during which the medical staff monitored her. She thought she had nothing to worry about. She admitted later, after she took the first dose, that the doctor had told her she could get the HPV viruses that cause cervical cancer through a lab accident at college, (where her blood might mingle with someone infected). She had been in a lab accident just a few months previous, so the fear of being infected was immense.

When she passed out the next morning on our family room floor, she got up wondering what had happened. Britt chalked it up to the possibility of being dehydrated. She had been quite active for several months. Several years before she had fainted from dehydration, so she didn’t think much of it. She was so unconcerned she didn’t even mention the incident until over a week later. By this point, she had experienced two other unusual episodes.

The next incident occurred nine days after her HPV vaccine injection. She had what we now know was a partial seizure. Three days later, her legs gave out while she was at a water park. Hammering pain spread up and down her legs for 15 minutes, then disappeared. As a parent, I was beginning to think the incidents were related, but was not sure how they were connected.

Britt is a fighter. She never backed down from anything, but charged head-on until she accomplished her goals. The nagging leg pain and the strange episodes of blacking out were just one more challenge to conquer. She pushed through summer determined nothing would prevent her from achieving her goal to graduate college and pursue a dream of becoming a singer/dancer.

Sometime mid-July, our doctor reassured us that what Brittney was experiencing had nothing to do with Gardasil. We were relieved – at least we could relax on that score…

In July, we took Britt to Myrtle Beach for a belated 21st birthday celebration. During this week, Brittney began to lose control of her emotions off and on. She would be completely normal, then suddenly explode. She would scream at us that we were trying to upset her, or prevent her from living her life. She had never acted this way in her life. Both my husband and I were shocked at her unprovoked outbursts. We spent the entire vacation walking on eggshells when she was present. It seemed the most innocent remark could set her off. The only thing that seemed to soothe her during that week was going to the ocean and walking the beaches.

In August, she had another ‘episode’ as the doctor called them, this time in the company of several college chums. One of them had a sister who experienced many seizures while growing up. She told Britt’s boyfriend at the time that it looked like Britt was having a partial seizure.

Unfortunately, the boyfriend would not accept this reality and shoved an inhaler in her mouth while she was unconscious and depressed it. Britt came around, choking on the aerosol. She told me about the incident later, which was upsetting. She also mentioned the incident to her doctor, but nothing more than a blood test was taken. The results showed that she was a little low on Potassium so she was told to eat more bananas.

In late August 2007, Britt received her second injection of Gardasil – again with no reaction during the 15 minutes of post-vaccination observation. But, within a week she began to have nagging issues with head pressure, like a cap with too tight of a band around her head. Over the next couple of weeks this progressed to the point where she could barely open her mouth because the muscles in her jaw were so tight. She began falling down for no reason. After three weeks, she began to experience blurred, doubled vision. She was extremely sensitive to light of any type. The pressure in her head was so intense, she was passing out daily. She developed a swelling that appeared to be filled with fluid at the base of her skull and along her spine. Along with all of the other symptoms, severe pain was raging through her body. As soon as her doctor examined the swelling, Britt was sent straight to the hospital.

Multiple tests were done, but nothing showed up on any of them. Britt was sent home with a couple of pain tablets. The resident on call felt she had some sort of brain virus and that it would go away in a couple of days.

From this point on, Brittney’s health deteriorated quickly. She couldn’t read anymore because the words seemed to run together or off the pages. She could no longer tolerate light or sound of any kind. We had to speak in whispers when near her or go up to the third floor and speak very softly. Her hearing was so sensitive that she could hear sirens more than three to four miles away and conversations several rooms away. She couldn’t sit in the same room with a television or radio on. Her pain was so bad, she cried all of the time. We bought noise cancelling headphones so she could tolerate trips to the doctor’s office. She had to have wrap around dark glasses – regular sunglasses were not sufficient to protect her from the severe sensitivity to light.

The nightmare didn’t stop there. Her face would sometimes droop to one side like it was sliding off her skull as pressure in her head grew worse. Seizures and stroking migraines began to happen 24/7. Her stomach was upset all the time. She could hardly keep anything down. She lost sensation in her legs and fingertips, she became completely bedridden, and simply longed to die.

Over the next three years, Britt was seen by over 60 doctors, including teams at Johns Hopkins Hospital, the Cleveland Clinic and the University Of Cincinnati Hospital. None of them could help her. She was so sick to her stomach, she could eat nothing but three ounces of protein drink at a time, fed with a baby spoon. Not one doctor suggested we have her stomach looked at. They simply dismissed it as being stressed, over-reacting to life, or a conversion disorder.

Just to give you an idea of what her new life is like, I will briefly touch on a few events:

  • January to March 2008 – Britt was totally bedridden and seemed to be wasting away. She nearly died before we found a doctor who helped alleviate some of her more severe issues. Unfortunately, she became intolerant of the medications that helped her. She began reacting to everything the doctor gave her. She was sent to many specialists who threw up their hands in frustration at her body’s resistance to treatments.
  • Early 2009 – We found an alternative chiropractor who recommended Okra Pepsin3 with Multizyme to help settle the lining of Britt’s gastro-intestinal tract. After several months, Britt was able to eat many organic and natural foods for the first time since her second Gardasil injection.
  • June 2009 – Brittney seemed to improve for a couple of months, including strength, but this didn’t last. By December she had lost all feeling in her legs, plus the head pressure had returned more intensely.
  • January 2010 – After being seen at Johns Hopkins Hospital Britt’s legs were put into massage bladders. This seemed to relieve some of the loss of feeling – when she left she could feel her upper thighs again. By spring, she was working with a researcher who was willing to try to help with some of Britt’s other issues. He suggested CoQ10, vitamin K Complex, magnesium, calcium and Vitamin D3 supplements. Britt’s sensitivity to light and sound diminished and some of her pain was alleviated. She had a boost of energy for the first time in three years.
  • April 2010 – A migraine specialist administered pain blocks to the back of her head (scalp) which relieved a great deal of the head pressure, jaw pain and complex migraines. She began to eat better.
  • June 2010 to January 2011 – Brittney seemed to be doing well. An alternative doctor had made some modifications to her diet that seemed to mitigate some of her more severe symptoms. She began a gluten-free, casein-free, sugar-free diet, avoiding Citric Acid, MSG, artificial preservatives, and mushrooms.
  • January 2011 – She was exposed to a virus. Her immune system could not handle it. She physically collapsed. The doctor told us that her immune system was crashing and he couldn’t help her. Britt’s grandmother sent over what we thought was homemade chicken with dumplings to boost her health. Brittney gained 60 pounds during the following 24 – 30 hours. We discovered there was Citric Acid in the broth. Nothing would bring the swelling down but time.
  • May to June 2011 – Her more severe pain symptoms calmed down a bit, but she was still vomiting. Her abdomen and stomach swelled to the point where she looked like she was six months pregnant.
  • 2011 – We finally found a gastroenterologist who was willing to examine Britt’s stomach. She was horrified at what she found – Gastroparesis – a damaged Vagus nerve in Britt’s stomach which prevented normal digestion and emptying of her stomach.

Last summer, 2012, we started taking Britt to another alternative doctor. Gradually Britt began to have a small semblance of the life she had before Gardasil. After months of IV treatments, she has been able to handle a large crowd at a cinema, a very busy restaurant, and even go to the mall briefly. Understand that these events have taken place weeks apart. She still has a long way to go. She has been able to enjoy her favorite music with the speakers “normal” without suffering. She wears her wrap-around low vision glasses only on very bad days. She is able to walk on her own for short distances despite the lack of feeling in her legs.

January to April 2013 – Britt has had a huge setback which we believe was triggered by an LH hormone test. This test was to check the levels of these brain-based hormones to try to regulate them. She felt like the Gardasil nightmare was starting all over again before the hormone was neutralized. Within days of the test she began a slow increase of seizure activity, which built from a couple over a four month period, to multiple, daily events. Some were so severe that her power port shifted under her skin. After four weeks of non-stop seizures, we were able to get her in to the doctor’s office for a much needed IV. It took her nurse three tries to find, then flush the port, before the IV therapy could begin. Her seizure activity has now slowed to a minimum. As long as she stays on track for the IV’s, (basic vitamin/mineral infusions that help boost her immune system, calm physical issues, improve mal-absorption of nutrients), she can maintain much of her homebound activities. There are still periods when we talk with her that she displays signs of confusion, memory loss, and inability to concentrate.

Brittney has been ruled “Disabled” due to residuals of Gardasil by the SSA. She receives some compensation through the SSI which is helping pay her myriad medical bills.

Nearly six years ago, Gardasil changed our lives forever. It has been a nightmare without end watching our daughter suffer through every stage of the past several years. She has literally become ONE LESS!

 

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.

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Crowdsourced Women’s Health Research

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women's health research

A dirty little secret in the world of women’s health – there are relatively few data guiding medical decision-making. Indeed, across all medical specialties the auspices of evidence-based are crumbling quickly in the face of open access and open science. Recent reports suggest less than 50% of all medical treatments have any data to support their efficacy. Of that evidence, much could be suspect given the rampant payments from pharmaceutical and device companies to physicians and other decision-makers, plus the well-documented publishing bias and even fraud plaguing the scientific publishing industry.

In women’s health, matters are even worse. Not only are evidenced-based, clinical practice guidelines nearly non-existent in Ob/Gyn (only 30% of practice guidelines based on data) and women still not included in early stage clinical trials in sufficient numbers, but regulatory agencies do not mandate gender analytics for new medications. The result,  post market adverse events – think death and disabling injury – are more common in women than men.

Why do women die and suffer from adverse events at a much higher rate than men?  Because most medications reach the market without having ever done the appropriate testing or analytics to distinguish why women might respond to said medications differently than men. Even in the lab, male rodents are used about 90% of the time.

What about medications developed specifically for women? These too are poorly understood, mostly because the outcome variables are not focused on the totality of women’s health. For example, it is important that oral contraceptives prevent pregnancy, but it is equally important that they don’t cause blood clots, stroke, heart attack or cancer. And if blood clots, stroke, heart attack or cancer are deemed acceptable risks for birth control (and I don’t think they are), then shouldn’t we know which pills are the most dangerous and which women are most at risk?

One cannot manage, what one does not measure and we don’t measure critical components of women’s health. We also don’t track adverse events or side-effects very well. Question: have you ever reported a side-effect to a doctor? Do you know if he/she reported it to the FDA, the CDC or any other adverse events registry?  Probably not, and that is the problem.

If you knew you had a 20 times higher risk of stroke or heart attack for one medication versus another, would you choose differently? I bet you would, but as medical consumers, we don’t have that information. In many cases, those data don’t exist.

That’s where crowdsourced research comes in. At Lucine, the parent company of Hormones Matter, we think the lack of data in women’s healthcare is unacceptable. We know that the larger companies who sell these products have no motivation to gather or make public these type of data – too many billions of dollars are at stake – and so, it is up to us, the women who need safe health products, to be the change agents.

The simple act of completing surveys on critical topics in women’s health can and will save lives. Your data will tell a story. Add that to the data from hundreds, and hopefully thousands of other women, from all over the world and from all walks of life and we will be able to determine which medications, devices or therapies work, which ones don’t. We can give women the information needed to make informed medical decisions.

We are currently running four women’s health surveys, but plan on running many more. So check back regularly. If you qualify for any or all, take a few minutes and add your data. If you don’t qualify for these, share these surveys with your friends and family through social media. The more data we can gather, the more clear our medication choices will become.

Health Surveys for Real Women

Oral Contraceptives Survey

Oral contraceptives (birth control pills) are used by 98% of the female population at some point in their lives. They are prescribed for a myriad of reasons unrelated to pregnancy prevention. Sometimes they work; sometimes they don’t. Wouldn’t it be nice if we knew which brands of birth control pills worked for which conditions? Better yet, wouldn’t it great if we could avoid the pills that didn’t work, made a particular condition worse or had a higher than average side-effect profile? Take this survey if you have ever used oral contraceptives. Help determine which birth control pills are safest and have the fewest side-effects. You may save another woman’s life and health.

The Hysterectomy Survey

By the age of 60 one in three women will have had a hysterectomy. Hysterectomy is one of the most common surgical procedures for a range of women’s health conditions. For some conditions, hysterectomy works wonders. While, for other conditions it is only nominally successful. The purpose of the hysterectomy survey is to learn more about why hysterectomy works for some women’s health conditions and not others. We’d also like to learn more about the long term health affects of hysterectomy – does a woman who has had a hysterectomy have a higher or lower risk of other health conditions? Take this survey and help improve women’s health.

The Gardasil Cervarix Survey

Women and their physicians need more data about the side-effects of the HPV vaccines, Gardasil and Cervarix. There is a lack of data about who is at risk for adverse events and whether certain pre-existing conditions increase one’s risk for an adverse event. There is also a lack of data about the long term health effects of these vaccines. The purpose of this survey is to fill that data void; to learn more about the risks for, and nature of, adverse events associated with each of the HPV vaccines, Gardasil and Cervarix. Take this survey and help improve women’s health options.

The Lupron Side Effects Survey

Leuprolide, more commonly known as Lupron, is the GnRH agonist prescribed for endometriosis, uterine fibroids or cysts, undiagnosed pelvic pain, precocious puberty, during infertility treatments, and to treat some cancers. It induces a menopause like state stopping menstruation and ovulation. It’s widespread use for pain-related female reproductive disorders such as endometriosis or fibroids is not well supported with very few studies indicating its efficacy in either reducing pain or diagnosing endometriosis or other pelvic pain conditions. Conversely, reports of safety issues are mounting, especially within the patient communities. The Lupron Side Effects Survey was designed to determine the range, rate and severity of side-effects and adverse events associated with Lupron use in women.

All surveys are anonymous and participation is voluntary. More information about individual surveys can be found: Oral Contraceptives Survey, The Hysterectomy Survey, The Gardasil Cervarix HPV Vaccine Survey.

Visit our Take a Health Survey page for new surveys and updates or better yet, sign up to receive our weekly newsletter for all the latest research and hot topics pertaining to women’s health.

 

 

 

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