May 2013 - Page 2 of 2 - Hormones Matter

The Gardasil Cervarix HPV Vaccine Survey

Published on May 10, 2013

8645 views

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

At Hormones Matter^TM 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 Lucine^TM, Hormones Matter^TM. For more information on Lucine, click here. For more information about Hormones Matter^TM , 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.

Is it Endometriosis?

by R S

Published on May 9, 2013

6930 views

I probably have endometriosis, but there’s only one real way to be sure: a laparoscopy. In a few weeks, I will undergo this minor surgical procedure and finally get a diagnosis for the disease I most likely have.

The symptoms started in late November: a strong gnawing pain in my lower right abdomen that worsened over a week. I could stand up, but not walk normally. When I went to my primary care doctor, he sent me to the ER. There, they performed a CT scan and a trans-vaginal ultrasound. All they found was excess fluid. “It’s a ruptured ovarian cyst,” the ER doc said. “It’s very common in women in their mid- to late twenties. Just rest for three days, take some NSAIDs, and see your gynecologist.”

My gyno did a pelvic exam and found that I was tender and sore over my right ovary and in terrible pain when he pressed on my left ovary. Not only that, but the ligaments near the back of my uterus were tender too. He asked me a very long list of questions that I was surprised to hear. “Have your periods been getting more painful? Has intercourse become more painful? What has your menstrual health looked like over the past six months? Has anyone in your family been diagnosed with endometriosis?”

I answered that my periods had recently become irregular and more painful, but nothing too unusual. I thought that intercourse had been normal, but my partner chipped in: “No, actually, there have been times when intercourse has been very painful for you.” I had simply dismissed it as I’d read that hormonal fluctuations are normal as you near 30, and that your periods generally become heavier and sometimes more painful. My gyno told me that this is called “normalizing behavior”: because something out of the ordinary doesn’t strike us as a medical problem, we simply dismiss it and forget it even happened, much less associate it with illness. Also, members of my family did have endometriosis.

He told me I’d have to have a CT scan done to check for ovarian cysts, and that we had to rule out polycystic ovarian syndrome and pelvic inflammatory disease, but it was likely I’d developed endometriosis later than usual. He prescribed a course of progestin to reduce the swelling of the scar tissue and adhesions and then told me to start extended-cycle birth control (where you only menstruate every three months).

I was hoping to have a quick diagnosis and be back to normal in a few weeks, but it turned out to be anything but short and simple to find a diagnosis and a treatment plan.

Progestin was very hard on me physically and emotionally. I vomited constantly, even waking up in the middle of the night to do so. I grew a stringy white beard and a brown mustache (these fell out when I stopped the medication). I found myself sobbing at cat food commercials and songs I previously enjoyed. I started feeling very cold and very warm at random intervals, and thought that my partner was messing with the thermostat. These, apparently, are the joys of hot flashes. I got vertigo and found myself stumbling dizzily to the kitchen or bathroom. With each dose, I became more emotionally weird. It was a short course of hormone replacement therapy, and it did in fact reduce the pelvic pain, but I’m terrified to ever experience that kind of emotional instability again.

I started the extended-course birth control and felt better each day that progestin left my system. There were new symptoms, though, and they continued to worsen over the next three months. I felt a strange tugging sensation in the front of my pelvis when I would bend over. It’s hard to describe, but it reached a point where I couldn’t bend over to take out the trash or put on shoes. It became horrifyingly painful to use the restroom in any way. My abdomen swelled, not too much, but enough that sweatpants and pajamas were my only option for pants. I was horribly constipated, probably because going to the bathroom hurt so much that I’d stopped eating normally.

Within two weeks, I couldn’t stand or walk without assistance. Everything between my ribs and upper thighs was a mass of cramping pain. I was hoping that the birth control would reduce what was possibly endometrial tissue enough that I could walk, but one night I was in so much intense pain, now on the left side, that I begged my partner to take me to the hospital. “Something feels like it’s going to burst,” I said. I had a fever and diarrhea and a stabbing pain on the left side. The CT came back perfectly normal. The ER doc said, “There’s nothing seriously wrong with you. You probably just have a bit of stomach flu, but see a gastroenterologist just in case.”

All in all, I’ve had two CT scans without contrast, two CT scans with contrast, five rounds of blood tests, one stool sample, two trans-vaginal ultrasounds, two ER visits, six specialist visits, and a colonoscopy. The specialists ruled out polycystic ovarian syndrome, liver or gallbladder problems, diverticulitis, chronic appendicitis, cancer, and mononucleosis. Everything came back normal except for the colonoscopy, and I’m currently waiting for the diagnostic laparoscopy.

I’ve been very lucky to have specialists that took my complaints very seriously. After three months with every test returning normal, I was starting to feel like it might all be in my head. All the tests come back normal, but I’m in horrible pain! I can’t even stand up by myself anymore! There has to be something in there, why can’t they find it? What if they think I’m just seeking painkillers? They have to know that I’m not making it up! And, most of all: Why is this taking so long? I’ve been sick for three months, and I seem to be getting worse. I can’t take another day of this pain.

My gastroenterologist thought I might have diverticulitis and put me on antibiotics and a liquid diet. He scheduled a CT with contrast. The scan came back normal, but the liquid diet really did help with the bowel pain. He then wanted to rule out chronic appendicitis and put me on a very strict diet with regular use of laxatives and scheduled a colonoscopy. At that point, I had a very swollen abdomen, would cry when anyone pressed upon it, had mucus in my stool, and had strong cramps throughout my abdomen and pelvis when I was full. I was starting to lose control over my bowel movements. I still couldn’t walk or stand on my own.

They did an exam moments before the colonoscopy and told me I might need my appendix removed or a colon resection. There was a chance I would wake up in a hospital, but not to worry. They had done this procedure many times, and I was in good hands. I went under the anesthesia utterly terrified.

When I woke up, they told me they had found a large growth in my colon. They had sent a tissue sample out for a biopsy which would return in around three weeks, but not to worry. My appendix was fine. I had no infection or abscesses. Just take it easy and drink a lot of fluids.

Two weeks later, the biopsy returned. The colon growth was completely benign, and they had cauterized its blood supply during the colonoscopy. It would wither and pass all on its own. My gastroenterologist said it might grow back, but not to worry. He’s fairly convinced, although we have to wait for the laparoscopy, that the growth is the result of endometrial implants and scar tissue putting pressure on my colon. He’s fairly sure that the laparoscopy will show that I have advanced endometriosis, and the implants and scar tissue have spread very far up my abdominal cavity, causing irritable bowel disease and the colon growth. He told me to follow a special diet, take laxatives as prescribed, drink plenty of fluids and above all, to calm down. Breathe. Relax. Know that I have good doctors and I will be OK.

I’ve discovered a few things along this bumpy diagnostic road. I’m allergic to all painkillers, so other pain solutions and stress management are vital. Warm baths, walking even though it hurts, and eating a vegan diet with lots of water and laxatives as prescribed are very important. I’ve been encouraged by my doctor to apply for medical marijuana use, but that’s a whole other story.

Stress reduction is the most important factor in my life right now. The pain and uncertainty of being diagnosed with this disease are very hard to experience, and also hard on family, friends, and romantic partners. Find music you think is soothing. Make sure you have some time in a park or near plant or animal life. Try meditation or yogic breathing if that’s something you’d like to do. Surround yourself with books and TV that make you laugh. If anyone treats you badly, blames you for the disease or pulls away, that’s their choice, and it doesn’t mean it’s your fault. Some people react poorly when confronted with illness, and that’s their problem, not yours.

It is so important to research your doctors and specialists before you make appointments. Make sure they have no citations for malpractice and that they’re certified to do the surgical procedures you need. If your primary care doctor or specialist minimizes or dismisses your symptoms, or simply tells you they don’t know what to do with you, find another doctor immediately. Keep a journal of your symptoms. They might change on a dime! There are many applications out there besides pen and paper to track your reproductive health and endometriosis symptoms.

I have lost nearly 30 pounds, but I can walk again now that the colon growth is gone. Sometimes I can drive, which is fantastic after four months of being stuck in bed. As long as I follow the vegan diet my gastroenterologist put me on and take laxatives as prescribed, my digestive health is more or less back to normal. The extended-cycle birth control has made my life a lot easier as well.

There are days when I can go grocery shopping, drive myself around, eat three good meals, and go for long walks. There are other days when I need to stop what I’m doing and rest because of pelvic pain. There have been a few days when I’ve vomited frequently and couldn’t sit or stand at all due to pain, and it’s back to bed for me.

I have so many questions now, but it’s a great relief to see the end in sight. After the laparoscopy, we will know for certain if I do have endometriosis. It runs in my family, and it seems the most likely culprit. My greatest fear is that they will find nothing, but I hope that won’t be the case.

Thoughts that keep me awake at night: What if the intense pain comes back? What if I become bedridden again? What happens when I’m 35 and have to stop the birth control? What will my sex life be like? Will my partner still find me desirable and worth the effort if I’m sick on and off until menopause? What if the bowel disease and growths come back? How will I find an employer that is understanding of this condition, of how I may have to take 2 or 3 days off every month if I’m in too much pain to stand or drive?

Those questions don’t really matter in the long run. Being anxious and scared is normal after all these changes to my body and life. Researching this disease and finding treatment options and coping mechanisms is of great importance. Building a support network of friends and people who know what I’m going through also matters. Finding doctors I trust and can work with matters. I don’t expect anyone else with this disease to say, “That’s exactly what happened to me!” Endometriosis affects every woman differently. Symptoms can differ wildly from person to person. Accepting my body, no matter how much pain it’s put me through, is also important. I’m still worthy of love and friendship, and my goals are still possible, I just have to shift my perspective a bit.

Statistical Shenanigans with Gardasil Research

by Chandler Marrs, PhD

Published on May 8, 2013

4011 views

Something’s hinky in the land of Gardasil surveillance and it’s not just the vaccine. It’s the statistics used in one of their widely reported surveillance studies on Gardasil-suspected autoimmune conditions. From the medical marketing and even the abstract of the study, which is all that most will ever read, it looks like there is no connection between the vaccine and the onset of autoimmune conditions. Indeed, all of the major media reported the appropriate PR:

One organization even failed to change the url before directly copying the press release from another agency; (guess which one, I was surprised). It is unlikely that anyone read this study before blasting the PR far and wide. Otherwise, if they had read the dubious and creatively contorted statistical manipulations, the headlines would have been much different. Perhaps, Researchers Choose Statistics Least Likely to Find Results in Gardasil Study, would have been more appropriate.

I have a nasty habit of reading research before I write about it. I’m sure it will get me in trouble at some point, particularly as this blog grows, but I can’t help it. I want to understand the research. So here you go, my opinion and review on the Surveillance of Autoimmune Conditions Following Routine use of Quadrivalent Human Papillomarvirus Vaccine.

Gardasil and Autoimmune Conditions

Anecdotal evidence abounds suggesting that Gardasil is linked to an increased incidence of a wide array of autoimmune responses, but aside from the convoluted VAERs tabulations, very little in the way of actual data exist. In Merck’s FDA-mandated post market surveillance of Gardasil (which should have been pre-market testing if you ask me), the initial study conducted at Kaiser Permanente in California, purports no connection between 16 autoimmune conditions and the Gardasil vaccine. The conditions investigated included:

Immune thrombocytopenia
Autoimmune hemolytic anemia
Systemic lupus erythematosus
Rheumatoid arthritis
Juvenile rheumatoid arthritis
Type 1 diabetes
Hashimoto’s disease
Graves’ disease
Multiple sclerosis
Acute disseminated encephalomyelitis
Other demyelinating diseases of the central nervous system
Guillain-Barré syndrome
Optic neuritis
Uveitis

Though not a complete list, it’s a start and if that were the only flaw in the research, I wouldn’t be writing about this study, but alas, it is not. There are several hinky statistical maneuvers that make it all but impossible to draw any meaningful conclusions from this research.

Statistical Shenanigans

Hinky maneuver #1. The PR reports and the study abstract indicate that the study followed almost 190,000 women for 180 days after each vaccine dose. This would be a great study if it were true. It is not. Researchers reviewed a possible sample of 190,000 medical records (not actual girls and women, but their records, flawed as they may be) from girls and women who had received at least one dose of the Gardasil vaccine. They subsequently removed all records from patients who had not been Kaiser health plan members for at least a year, leaving 149,000. Still a large number of health records, but not the reported 190,000 girls and women followed post vaccine.

Hinky maneuver #2. From those records, they looked for possible new onset cases of the aforementioned diseases within what they defined as a risk period of up to 180 days post vaccine. Read beyond the abstract and we find that, not each dose received the same time frame. The risk period for the first dose was 60 days. This is problematic because a large percentage of patients chose not to receive all three doses and it often takes multiple months to receive a proper autoimmune disease diagnosis. Those data were not reported here and so, it is not clear how many cases may have been missed by essentially compressing the time of onset to within 60 days post first dose.

Hinky maneuver #3. From the 149,000 health plan members, 1014 potential new onset autoimmune cases were identified, 719 were deemed eligible for review (no definition of eligible was given) and only 347 were sampled for case review: “Because of the large number of potential new-onset cases identified for SLE (systemic lupus erythematosus, RA (rheumatoid arthritis ), JRA (juvenile rheumatoid arthritis), Hashimoto’s and Grave’s disease, a random sample of potential cases for these conditions was included for case review.” For the other conditions, which apparently didn’t have as high an incidence of new onset cases, all cases were included. Beyond the possibility of the admittedly ‘large number of potential new onset cases’ no reasons for reviewing only the sub-sample of the cases was provided, nor was an explanation of their ‘random’ sampling technique. What is clear though, is that by superficially limiting the number of cases, one skews the statistics and limits the ability to detect differences between the vaccine-related autoimmune and the non-vaccine autoimmune diseases.

Hinky maneuver #4 – the granddaddy of hinky maneuvers. Rather than do a matched case control study or a myriad of other possible, more logical and more powerful study designs to compare the rates or risks for onset of these conditions, this study (mis) used statistical techniques designed to manage missing data points (within a larger data sets), to effectively substitute a control group. There was no control group in this study. It was a statistical manipulation and a poor one at that, unless of course, the goal is to not find statistical differences, then it was a pretty creative choice.

Using a statistical procedure called Rubin’s multiple imputation, the researchers effectively (though not technically, for you stats wonks) estimated the data for the entire control group. According to the study authors, “by treating the actual status of new onset as missing data for the un-reviewed potential cases,” they imputed (substituted) 500 cases to come up with median, control group data that was then compared to the vaccine group data of 347 cases (the random sample of potential cases).

If this sounds really hinky, that’s because it is. By imputing the control group, they guaranteed that they would not find differences between the unvaccinated and vaccinated group. Indeed, they changed the question entirely. Their comparisons are no longer about the rates of onset between those vaccinated and those not vaccinated, but rather between those vaccinated verses those “estimated to potentially have a condition based on data imputation” which may or may not be the same as for those in the true unvaccinated population. This is completely different finding than what was reported in the study’s abstract, which is probably the sum total of what most PR and media companies read before regurgitating it endlessly through the news streams. And in that regard, this ‘study’ served the vaccine maker well, but it certainly does not serve the health of the public or scientific process at all.

Post Script. Poking through the statistical shenanigans, if we look only at the raw numbers from the abridged case pool, there appeared to be a high rate of Hashimoto’s, rheumatoid and other autoimmune conditions. However, without a properly designed study, it is difficult to delineate an expected incidence in the given population versus the observed incidence.

Dietary Spring Cleaning: Tis the Season to Eliminate Red Meat

by Jordan Davidson

Published on May 6, 2013

2312 views

To come out and say that one should eliminate all red meat from their diet might sound rash; a part of some great overly zealous vegetarian (down with the man, up with the green juice, etc…). However, any and all ulterior motives aside, red meat is not good for you and that’s phrasing it nicely.

A study from Harvard published in the Archives of Internal Medicine (2012) found that red meat is associated with an increased risk of Cardiovascular Disease and cancer related deaths. The study also found that switching to other healthy protein options helps lower CVD and cancer risks (fish by 7%, poultry 14%, nuts 19%, legumes 10%, low-fat dairy products 10% and whole grains by 14%). Based on the research it was estimated that 9.3% of deaths in men and 7.6% in women could have been prevented if all the participants had consumed less than 0.5 servings per day of red meat.

A serving size of red meat is considered to be about 3oz, which would make half a serving size 1.5 oz. Not sure what 3oz of red meat looks like? It’s about the size of your standard deck of playing cards. So if you are trying to eat heart (and body) healthy – I hope you have the appetite of Tiny Tim – otherwise 1.5oz of red meat might not cut it for you. However, many dietitians recommend for optimal health that you try and eat no more than 4oz of red meat per week. It should also be noted that the type of red meat you eat also plays a role in your risk. A daily, 3oz serving of unprocessed red meat was associated with a 13% increased risk of mortality, while a daily serving of processed red meat (one hot dog or two slices of bacon) was as associated with a 20% increased risk of mortality.

Part of the reason red meat is so detrimental is because it contains large amounts of saturated fats and cholesterol. Lean red meat does contain a lot less cholesterol and saturated fats than red meat however, it has cancer causing compounds that form when cooked at high temperatures. And of course don’t forget your processed meats (hot dogs anyone?) which are chock full of nitrates, saturated fats, cholesterol and sodium. 6 slices of bacon a day (9 oz) can increase your mortality rate by 60%. This is why the American Institute of Cancer Research suggests not eating processed meat at all.

While red meat isn’t good for anyone, especially those with hypertension, high cholesterol, heart disease, or a family history of any or all of those problems, red meat is also bad for those with chronic inflammation and women with pelvic problems such as endometriosis. A study conducted in Milan published in the Journal of Human Reproduction (2004) found that women who ate red meat on a daily basis were 80 -100 times more likely to have endometriosis.

Red meat contains prostaglandins, as do our bodies. Prostaglandins are hormone messengers that relay pain messages. There are good prostaglandins and bad ones. The bad ones rely hormone signals which lead to inflammation, blood clotting, fever and pain. Despite the ‘bad’ connotation these are necessary because they alert our bodies to problems. If you had a serious infection without a fever, you might not know and then you wouldn’t be able to treat it. For women with endometriosis excess prostaglandins are bad because they can attribute to more pain and inflammation. Red meat contains these prostaglandins and is believed to therefore increase pelvic inflammation and pain.

This spring clean out your internal closet and make a resolution to treat your body better. The best way to stay healthy is to make healthy choices in your every day life and there is no easier way to do that, than by making smart decisions about the food you eat.

Jordan Davidson is a Freelance Health and Nutrition Writer based out of New York City. She is also the proud parent of a new blog Hersterical – Healthy Living for the Less Healthy. You can contact her with any inquiries at hersterical@gmail.com. You can also follow her on twitter at: @JA_Davids.

One Less After Gardasil

by Roxie Fiste

Published on May 2, 2013

21592 views

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

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

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May 2013 - Page 2

About Gardasil and Cervarix

Purpose the Gardasil – Cervarix Survey

Who Should Take the Gardasil Cervarix HPV Vaccine Survey

How Long Does the Gardasil Cervarix HPV Vaccine Survey Take?

Is the Survey Anonymous and Secure?

How Will the Data be Used?

Who is Conducting this Research?

What Can I Do To Help?

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