Gardasil - Page 4

One More Day – A Day in the Life Post Gardasil

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My head feels strange, like I might have a seizure today. It is difficult to explain, but Mom seems to understand what I mean. She tries to get my breakfast made as quickly as possible. My legs are so unstable so decide to sit in my favorite recliner – maybe watch one of the shows I recorded while my food is being made.

The pain in my head, the pressure especially is worse right now. Brain fog is preventing me from understanding what is going on in the program. Thankfully, Mom arrives with my scrambled eggs, gluten free English muffin, grapes, mint tea. She knows my stomach is not the greatest, but I am hungry!  She sits with me for a few minutes while we eat. We talk a little but my mind isn’t thinking so clearly. That weird feeling in my head is worse. As Mom heads back upstairs with my tray I ask her for some sparkling water for my stomach.

The blinding pain hits me like a white-hot knife cutting through my head. It is a searing series of jolts, like I am being electrocuted multiple times. Mercifully, an inky blackness spreads over me and everything goes dark.

Even though I’m pretty sure I’m still on the recliner I am only vaguely aware of choking on the foam that has risen in my throat during the seizure. I can feel Mom trying to wipe my mouth with a tissue. She lets me tug it from her hand to clear my mouth better. It hurts incredibly to move, but I need to get to bed. The pressure is worse in my head now.

The weird sensation is rising from my stomach into my head. Have to tell Mom, but my vocal cords are frozen. I’m blind as well from the first seizure. Even my hearing is gone. All I can do is make motions with my hands, but Mom understands enough to lower the recliner, ease me forward, then slowly get me to my feet. It’s a struggle to do any of it but will my body to stand. Oh, how I wish my legs would cooperate! They are weak, trembly, unsteady. Can’t blame them, they have very little feeling left from mid-thigh down. Mom slides my arms around her shoulders, then leads me to my bed – Slowly, Mom, legs are protesting, my mind tries to shout. After what seems like forever we reach my bed. Mom helps guide my hands to the edge, helping me find the blessed pillows. It’s so hard to lift my legs, but finally I’m safe on the mattress, before another seizure hits.

I have no idea how long I’ve been lying in bed when my consciousness returns. Without vision, hearing or speech it is impossible to know anything safe for the new levels of pain that run from my head to my upper thighs. Everything is achingly tender. I flinch when Mom gently strokes my ear. She pulls her hand away not knowing how to comfort me. While attempting to sign to her I discover the blood pressure cuff is still on my arm – It hurts! Must have whimpered because Mom quickly got it off.  I sign again to the open air, hoping Mom will understand. She gives me her hand so I can spell out short words. She squeezes my hand once – Yes! She understands my request! (We worked out a system to communicate when all of my other senses flee after a seizure. Squeeze once for Yes, squeeze twice for No. And when my confusion clears enough we spell into each other’s hand to ask or answer questions.)

After giving me a drink to clear my throat, Mom lets me rest – I truly need rest to recover. My body won’t cooperate, needing a trip to the bathroom. After locating the wall by my bed, I begin to knock. I don’t know how loud it is, but Mom is quickly by my bed. She holds my hand to let me know, but I flinch again from the pain. That hand is swollen a bit as well. Mom waits for me to sign, which is easy this time. She gently guides me to and from my destination; helping me as best she can. Finally back in bed, she signs into my left hand to rest. Wish my hearing would release – I need to listen to my ocean CD. It is so relaxing.

After lying in my bed a few minutes, aching from the seizures, my hearing suddenly returns. Silent tears slide down my face unbidden, but I can’t help it. Every time my senses begin to return, there is relief, joy, thankfulness. Knocking on the wall again, Mom returns, but I can hear her softly speaking, praying for me. When I respond she is also relieved that my hearing returned. She immediately turns on my ocean waves CD. She whispers she loves me, then allows me to drift fitfully to sleep.

Several hours later I awake, realizing immediately that my vision is returning. It isn’t the greatest, but I have color and can distinguish objects. My legs are a little less wobbly so I can get my own water. Eventually I can get out of bed, go up to the kitchen to see my mom. She is surprised that I’ve negotiated the steps on my own, giving me a smile and a gentle hug. My body feels I have been in the fight of my life, tender, aching, sore, but my head pressure is improved some. The weird sensation is almost gone. Mom notices one of my eyelids is drooping, but it’s hard to miss. She just smiles, then asks me if I’m hungry. Since my voice hasn’t returned I sign in a little while. After I get a glass of mint tea, Mom helps me back down to the family room. My vision still isn’t the greatest but I can watch Duck Dynasty! The show makes me laugh which I desperately need until supper.

My stomach isn’t doing the best right now; ate something with gluten a couple of days previous, so I’m paying for it. Mom has given me several choices for supper, but nothing sounds good. My dad had just finished eating, giving me a soft kiss on the forehead. He has to go to a meeting at church, so he can’t linger but a few minutes. How I miss our dates we had while growing up! It’s been a long time since we’ve been able to have dinner and a movie night. I smile at my dad, trying not to let him see my pain. The Gardasil injury has been very hard on both my parents. Not an easy thing to live with, but this is my life now.

Mom finally makes me quinoa with chicken and organic veggies – it tastes good so digesting will be easy, I hope. After watching a movie with mom I decide to take a shower. Couldn’t get my IV today, but I’m very determined to go tomorrow! Mom isn’t crazy about the idea, but lets me know she will be close by. I am thankful that I can do this much finally, but knowing she’s close if I need help is reassuring. After my second dose of Gardasil, Mom had to bathe me, feed me, help me in and out of my wheelchair. Six years later I’m doing some things on my own again!

During my shower I begin to overheat. Reducing the water temperature isn’t helping. My head and stomach are way too hot now, so I quickly shut off the water, open the door while trying to call for mom. Even with the door wide open, my towel is too hot as well. As the waves of nausea strike, I grab my trash can. Mom arrives as I lose my super.  My body really seems to hate me, though my voice has unexpectedly returned!  At least something positive has just happened! Wobbly legs and trembling arms prevent me from drying off quickly. With Mom’s help though, I’m partly dressed by the time I hit my bed. My face is on fire from the flaming nerve endings that bloom on my body randomly. The nausea is pretty bad, but mom fans me best she can. Finally, after what seems an eternity, the flame in my face and stomach fades. I’m still trembling from the exertion but at least I’m not tossing my cookies. Mom gets me something for my stomach, Bromelain – best thing I’ve ever tried for nausea! It settles my stomach to the point I can finish getting ready for bed. Thank you, Lord, for getting me through one more day. Tonight, hopefully I will sleep. Tomorrow will be a better day…

Brittney and Roxie Fiste

To read more about Brittney’s Gardasil injury: One Less After Gardasil.

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Knitting for Victory against Gardasil

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It wasn’t too long ago that you read the story about my daughter Alisa Duckworth and how her life was dramatically disabled from the Gardasil vaccine series, see Gardasil Injured. What I didn’t tell you about Alisa, is how loving, caring, and compassionate she is about helping others. Alisa has made it her mission to knit hats to help the other victims of the vaccine. She has even shipped internationally.

Knitting

The story begins during her first paralysis; I would sit by her hospital bed and knit for hours – just knitting without being aware of the time. I finished the first hat and put it on Alisa. She wore it her entire stay in the hospital. She called it her security hat.

I taught Alisa how to knit a few years ago to help keep her mind off the intense pain. She struggled to learn, as the pain would take away her concentration. It was extremely frustrating, but she was determined. Soon she got into the rhythm of the stitches and knitting became easy for her. She would focus on the project she was working on and found it very relaxing.

Pay it Forward

Alisa has taken her knitting and is now “paying it forward”, so they say. She finds that knitting helps with her pain control. She knows how her security hat made her feel better and is now knitting hats for the others injured from the vaccine. She finds comfort in making them a hat in a pattern and color of their choice. She then mails out the hats to them.

You Can Help

With her medical care bills already out of control, I found it was getting really expensive to buy the yarn and pay for the shipping too. I spoke to her about options so she could continue knitting for the injured and knitting for her pain control. We came to the conclusion of using her Allie Designs on Facebook. She sells her hats to customers and uses the money to purchase more yarn. We also have a Paypal account where she accepts donations to use for yarn and shipping. The PayPal account is steven.duckworth@gmail.com.

Educate before you vaccinate.

Allie’s Designs

Sarah Meyers wearing one of Allie's DesignsAlexis Wolf wearing one of Allie's DesigsMickayla Dussault wearing one of Allie's Designs

 

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.

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Five Years After Gardasil

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My name is Ashley Adair and I am suffering the side effects of something I thought would help me.  I received the Gardasil vaccine because the people and doctors all around me kept telling me “OH! This vaccine is the best thing to happen to the medical industry!” Of course my mom and I fell for it like many girls have. I want to let people know about the dark side of the Gardasil vaccine.

My Life Before Gardasil

Before the HPV Vaccine, I was the most energetic child. I went to school for 8 hours, then went to 3 hours of gymnastics practice, finishing with homework at night. My weekends were filled with gymnastics meets. After gymnastics I went straight into competition cheerleading, which were the same hours. I basically lived in the gym and loved every second of it. I was blessed. Overall I was a healthy child.

After the First Gardasil Injection

I received my first injection in April, 2008. My injection did hurt more than a normal injection. I had mild soreness and redness after. At the time, I didn’t recognize the symptoms I was having. I had slight fatigue, and I would occasionally have a very sore throat. I could not stick my tongue out and I just threw it off as an allergic reaction to chlorine because I was swimming a lot.

After the Second Gardasil Injection

The nightmare began in June, 2008. I received the second shot and I noticed it hurt a bit more than the first. I almost cried a bit, which is very much unlike me. I got a little lightheaded at the checkout line. After 30 minutes, I was fine. The very next night I told my mom I was very sick. I was crying in pain with my pelvis and legs absolutely killing me. I was running a fever and I was very nauseous. So like any parent would, she took me to the emergency room. Of course, the doctors only listen to one symptom and told me I had a stomach virus and that they couldn’t do anything for me. They sent me home.

The next day I was so exhausted and slept till about 3 o’clock. My mom came home from work.  I went outside and noticed I had some kind of rash all over my body. It looked like someone took a fine point purple permanent marker and dotted it all over me. My mom immediately took me to my regular pediatrician and he could not figure out what was on me. He ran a lot of blood work and we went home until we could receive the blood work news. My mom received a phone call around 9 o’clock; one of the scariest phone calls she has ever received. My doctor told her I needed to get back to the ER ASAP. He told her that my blood work was CRITICAL, and the rash on me was called a petechial rash.

Petechiae rashMy red blood cells and white blood cells were completely wiped out. They told me if I were to do a handstand my gums would start bleeding and I would bleed to death. If I caught a common cold my body would not be able to fight it off and I would die. Over the next six weeks I went through so many different rashes, EXTREME fatigue, joint pains, leg pains, shoulder pains, dizziness, and low blood pressure. I finally went to an infectious disease specialist and he told me not to get the third shot or I wouldn’t be here.

I finally started getting better. At the age of 15 I still had not received my menstrual cycle. I went to an OBGYN and he put me on birth control to start my period. That should have been a sign then but we didn’t think about it. I never gained my energy back. My senior year things started acting up again. I got a hemangioma on my lip.

This was very strange because it is mostly babies that will get a hemangioma, not adults. After that happened, I started getting very sick. I missed weeks of school at a time. I kept getting severe bronchitis and I just couldn’t shake it off. I also had to go to the doctor because I was very depressed. I was then put on Zoloft. Luckily my teachers worked with me and I graduated with A’s and B’s.

Ashley Adair Hemangioma post Gardasil
The hemangioma that developed on my lip.

Five Years Post Gardasil

Over the five years after I received the shot I always slept, never had energy, and kept getting what I thought was growing pains. In June of 2012 my growing pains were getting worse in my knees/legs. So my mom took me to the doctor and they couldn’t really figure out what was wrong. They put me in a knee brace and gave me medicine and sent me off. I also just did not feel good at all and my doctor ran some more blood work on me. We then found out I had hypothyroidism, I am now on medicine for that.

From June 2012 until now (August 2013), I face every day with severe pain. My pain is in my lower back, pelvic, hips, back of leg, and knee. I had eight epidurals for the pain. Nothing worked. My legs will also turn a dark purple almost black and it will travel all the way down to my feet.  No one seems to know what causes this.

Ashley Adair post Gardasil blood pooling
My leg turning purple.

I had an MRI for my back and found out that I am missing an ovary and have a mass on my uterus. Of course, when I went to the OBGYN for it, he did a sonogram and could find neither the mass nor my ovary. He threw me off like it was no big deal. I am now lost on whether I have an ovary or a mass.

I have discovered in this situation that doctors really will not try to help you. They just don’t believe you or throw you off to another doctor if they can’t figure it out. I also have lost family members because of this problem. Not everyone will believe you or know what you are going through, but I am here to get my word out so no girl or boy will have to go through the misery that I am going through. I want to create something good out of something terrible.

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.

 

Before and After Gardasil

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On January 29th, 2011, I went to a gynecological appointment with my fiancé to discuss birth control pills and get my first set of HPV Gardasil vaccinations. I believed the vaccine was important. I personally had never taken the time to research vaccinations or Gardasil. I believed it was a part of the ‘healthcare’ system.  I had seen the commercials and wanted to be ‘one less girl’ affected by cervical cancer. I didn’t know the ingredients, the real statistics on HPV, cervical cancer, or even how long it had been studied and tested. I knew nothing about the vaccine but trusted my doctors.

My Health before Gardasil

Prior to that visit, I had been dealing with spine issues and pain since I was a teenager. In October of 2010 I had another injury that put me out of work and aggravated my spine issues. I was prescribed heavy doses of muscle relaxers.  I had been taking those medications for the six months prior, but had weaned myself off a couple weeks before my Ob/Gyn checkup. The muscle relaxers were causing gastrointestinal (GI) complications in my body, exacerbating GI issues I already had. I thought this appointment would be beneficial and I was happy I had weaned off muscle relaxers two weeks prior. I was hoping to keep what small progress I had going.

My First Gardasil Injection

Within the first few days and for the week after the Gardasil shot, I was bedridden and sick with what we thought was a bad flu. It was also possible I was having a reaction from the muscle relaxer withdrawal or the side effects of my newly prescribed birth control pills. I stopped taking the birth control pills after eight days and my symptoms worsened.

My mother and fiancé remember the physical changes when I wasn’t feeling well, but those few days after Gardasil have blurred together for me. I was so sick. The next days, weeks and months to come, I experienced the worst nausea, weakness and most severe pain in every crevice of my stomach and body that I have ever felt in my life. Even the other stomach sensitivities and spine/back issues I had experienced previously paled in comparison to what happened to me after getting Gardasil.

The Doctors

We went to every doctor appointment and tested everything we possibly could. The tests kept coming back ‘fine’. (Ironically, they never tested for heavy metal poisoning, which we found later I had. If any doctor would have known those symptoms, I had nearly all of them, perhaps I wouldn’t have suffered for so long.) None of the doctors said there could be any connection with Gardasil, but we suspected otherwise. In fact, most told us just the opposite; that my symptoms were definitely not caused by Gardasil. It was not until blood tests taken outside of my doctor’s office nine months later that we discovered the toxic stress, heavy metal poisoning and other toxins were filtering through my bloodstream. (Gardasil ingredients included; we finally connected it with certainty here.)

The Pain and Nausea

During this period of many months, for twenty four hours a day, every moment of my life, I was nauseas, sick to my stomach and alternating puking. I could not drink water or eat anything without getting sick. Digesting anything was extremely painful. It hurt to move, to walk or to do anything. I could not even wear jeans around my waist for seven months because of how painful my stomach felt. I discovered new levels of dizziness. I was losing weight rapidly, up to 15 pounds a month, with limited activity.

Nicole Alexandra Before and After Gardasil
Left: me in December 2010, one month before Gardasil. Right: a year and a half later, July 2012 after the extreme weight loss post Gardasil.

I tried to focus and meditate healing into my body to counteract what was happening. I lost 100 pounds within that first year and a half. My diastolic blood pressure dropped to the 50’s/40’s. It used to be consistently around 120’s/60-70’s. My hair fell out at the rate of my weight loss – quickly. Even my tongue turned a grey black color in the center, and my eyes turned a slight yellow.

The most challenging and embarrassing issues were the gastrointestinal problems, which were each horrifying on their own. Every time I had to use the restroom, it made me more ill than I already felt, and the pain I experienced is something I will never forget. The pain in my stomach and body was disorientating. It physically hurt everywhere. I struggled focusing, verbalizing my anxiety or frustrations because I was feeling so toxic in my own body. I was in more pain, more exhausted and more fatigued than I had ever felt. It was often overwhelming and uncomfortable, especially trying to sleep with comfort or ease. Meanwhile through all of this, I was told by my doctors that I had Irritable Bowel Syndrome (IBS) and to go on a whole grain diet. That was the only advice they had for us, after all my symptoms, IBS. We knew we needed other help and resources.

Family Support

My family focused all of their efforts into helping me any way they could. I was already seeing an acupuncturist outside of my insurance every week and she was documenting my progressing issues as time went on.

We bought vitamins, herbs, protein powders, digestive enzymes, probiotics, and fiber supplements to treat IBS issues. We began the first of many dramatic diet changes to facilitate gut healing. After months of using these products, they were helping on a small scale by not making things feel worse, with some slight benefits. The nausea and pain were still constant. My back and whole body were amongst the most excruciating pains and because of the pain, my mobility, energy and strength were limited. As the months went by, I became further immobilized. I walked as much as I was able. I tried swimming during the summer, but it exacerbated my pain greatly. My physical therapist told me, “This was as good as I was going to get.” We didn’t stick around with her after that.

Out of Desperation

We were at our tip of desperation after I returned from a two day trip with my fiancé. We went out of town to see friends. It was traveling, something I hadn’t done during this year of many changes. We were trying to make it work even with my health complications. It was wonderful seeing my friends, but my body could not recover from exhaustion after returning. We sought additional help. The physicians we saw during this time had not helped, many would not help and denied my symptoms. It was my acupuncturist, who stuck with us and tried to heal me. She gave me the name of a chiropractor in the area. It was worth a try.

Chiropractic Health

One of our biggest blessings through this chaos was finding chiropractic care and meeting my chiropractor, Dr. McKillican. He recognized the crisis my health and nervous system were in and was the first sincere and genuine doctor that strived to help us. A chiropractor was not on any of my insurance or among the recommendations suggested to me, ever. In fact, I was advised to stay away from them earlier in life. I know with my whole being that chiropractic saved my life, especially during this crucial time of disease and sickness. I have been getting weekly adjustments for nearly two years, beginning seven months after getting Gardasil. Chiropractic adjustments have made significant and dramatic improvements in healing and strengthening my nervous system and body. Regular adjustments work on our nervous system to remove nerve interference within us and to promote the body’s natural ability to heal itself.

 Vital Hematology and Nutrition

Nine months after Gardasil, I worked with a vital hematologist to detoxify my body naturally. We used a focused diet that included: juicing specific veggies, fruits, herbs, multiple vitamins, digestive enzymes, colloidal silver, olive leaf extract, glutathione, aloe vera juice. This regime greatly helped with my unbearable, chronic nausea.  It seems to have reduced the intensity of pain throughout my stomach. I have had significant improvements in GI health.

This past year I also began working with a nutritionist to deal with the continuous mending needed to repair my GI issues, adrenal dysfunction, energy, appetite/food challenges and over all internal damages. I am thankful beyond words for the healing I’ve experienced, and despite the pain and the many challenges I have faced post Gardasil, my body is mending at the rate it can.  I use my energy to focus on this.

Two Years Post Gardasil

The issues I am still working on healing and mending are different two and half years after Gardasil are the autoimmunity changes. These include:  gastrointestinal issues, body pain, appetite dysregulation and the ability to eat enough, malabsorption of nutrients, low blood pressure and dizziness, energy, sensitivity to cold temperature and chemicals.

Food and my appetite can be very overwhelming sometimes.  I often don’t want or have the desire to eat or I get full too quickly. I also get really hungry all at once, often unexpectedly and painfully. The food and appetite issues are a constant work in progress that is still very complex. They have become somewhat easier to work with now than in the years before. I find focusing on ratios of carbs, fats and protein I need helps. I have also eliminated foods with gluten, GMO or that are processed. I no longer eat foods that are spicy or acidic either. I eat raw organic veggies only juiced because my GI tract cannot tolerate the un-juiced vegetables.  I watch my sugar intake, including many fruits, and other foods that I am sensitive to. I eat whole foods, organic vegetables and fruits, good fats (butter and coconut oil have helped immensely here) and as much healthy, grass fed, organic protein and protein shakes as my body needs to be balanced. All this has helped substantially.

My healthy lifestyle is vital to keep my progress going. With nutrition, vitamins, medicinal herbs, supplements, regular chiropractic adjustments, removing as many toxins from my environment, and adding as much movement, exercise, walking or stretching as I can, I am slowly improving. I also use coffee enemas and drink alkalized water (and lots of it). My body now seems to be on the path it needs to recover from the atrocity that Gardasil caused. Every day is different with pain and energy levels, but I focus on the blessings, because I know how much worse it can be.

The Support of My Family

It has taken a substantial amount of money, time and sacrifices from my extraordinary mother and fiancé to care for me post Gardasil. Without them, none of this progress could have been possible. I am more grateful and humbled than ever to be alive and for all the amazing, most abundant love and support of people I’m blessed to share my life with. I could not have come this far without these wonderful people.

Gardasil changed my health, my life, and family’s lives forever; physically, mentally emotionally, financially, and educationally. What I can give and share with others through this experience is the truth, my experiences, and the real facts and statistics regarding Gardasil. I plan to do this until this vaccine exists no more.

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.

A Day in the Life of Alexis Wolf: Six Years After Gardasil

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Alexis is now 20 years old. Six years have passed since her first injection of Gardasil. Life has changed drastically since then. After the Gardasil vaccine, Alexis developed encephalopathy, Traumatic Brain Injury (TBI) and a horrible seizure disorder that has yet to be controlled. Read the first part of Alexis’ Gardasil journey here.

Post Gardasil Brain Injury

Alexis’ brain injury post Gardasil is in the frontal lobe. This part of the brain controls so much of who we are. This has left Alexis with the mental capacity of about an 8 year old. She gets very confused easily and struggles with short term and long term memory so she requires constant supervision with frequent redirection on everyday tasks. Her skill level of preparing meals for herself and daily personal hygiene is almost nonexistent. She can no longer take showers due to the danger of having a seizure and falling. I have to help her take a bath and make sure she gets clean. I have to assist in washing her hair to make sure it gets clean. I also have to get her clothes ready for her. She can usually dress herself with little assistance.

Post Gardasil Bowel and Bladder Problems

Since receiving Gardasil, Alexis progressively lost bladder and bowel control.  She has to wear adult diapers.  Sometimes she will put her fingers inside her anus to try to help herself go #2. Although we have discussed this with all of her doctors and with her, telling her it is very dangerous for her and everyone one else, she cannot control herself. We make her wash her hands OFTEN. I wipe things down with Lysol wipes OFTEN.

Post Gardasil Pain

Alexis has often expressed frustration, depression and suicidal thoughts as to her present life and her future. She can be swift to anger and have great mood swings. She will slam doors, throw things, spit at us and call us a variety of cuss words. She is miserable most of the time. She complains about pain constantly. We have been turned away by three different pain specialist because they review her records and tell me she is “too complex” for them to treat. The only thing she has to help her with the pain is medical marijuana in the form of tinctures and vapors. When her head hurts really badly she will hit her forehead with the palm of her hand and say “brain get better, brain get better…” She also complains about all over body aches, sharp pains in her chest, joint and muscle pain. She will tell us that everything looks scary, strange and unusual even herself. The best description she was able to give us was that it looked like the walls were melting and people looked like cartoons. I had to take her out of high school for the above reasons. Her teachers were not very patient with her and they would push her buttons so one day she hit one of her teachers in the arm. The school called the police so I took her out of school.

Post Gardasil Seizures

Alexis’ speech patterns can often digress to repetitive statements over and over. This occurs without the knowledge that she is engaged in that behavior. Her motivation level is very low due to her brain injury. Getting her to do anything is quite the struggle. Almost every task is labored and takes lots of patience from the person helping her. Often at times she will flat out refuse to move and begs to take a nap. She naps off and on all day every day. We really do not know how long she sleeps at night but we think it is no longer than two hours at a time. The seizures happen all the time and they wake her up while she is sleeping. She is usually unable to fall back to sleep, so she wanders the house and searches for food. She has horrible impulse control and she is not able to tell if she is full or not. We have to keep the fridge and the pantry locked up at all times so she does not eat herself into a coma. If she eats a full meal and then has a seizure she will forget that she has just eaten and she begs for food saying that she is starving. We also lock up her medications because she will forget that she has taken them and try to take more even though I store them in those daily dose medicine boxes. She can have many, many seizures in a day. She takes anti-seizure meds and she also has a device implanted in her chest called a VNS therapy. It is supposed to reduce or stop her seizures but so far we have not really noticed a difference. She has had it for 3 years and soon she will be due for a battery replacement that will require another surgery. The battery should have lasted 5-10 years but the doctors have made so many adjustments on the therapy levels that the battery only has a few months left of power.

Alexis having a Seizure in 2010

Six Years and Counting

In the past six years we have had to deal with many people who do not understand the side-effects of the Gardasil vaccine. We have been accused of horrible things. We have had to endure being investigated by Child Protective Services, Adult Protective Services, police, detectives and more. Family, friends and neighbors have turned their heads and left us behind. Alexis’ father has not spoken to her in two years and all the help he had once offered is nonexistent. The government services that should support Alexis and her brain injury are bogged down so she is on a waiting list of over 40,000 people. I was told she MIGHT get services in 2019 when her name comes up next on the list. The way things have been going it is possible that all money and services may dry up and go away before her name even comes up.

Alexis’ inability to live independently will require lifelong care and assistance. I worry all the time about what will happen to her when I am no longer able to care for her. Every day new challenges arise so I can never put down my guard. I have been told by at least two doctors that I should look into some sort of institutional assisted living facility, but I cannot wrap my mind around that just yet. Life is quite different than it was six years ago, before Gardasil. Six years ago Alexis was a normal 14 year old. Starting to wear make-up and get interested in boys…working hard in school and enjoying honor roll. She had her whole life ahead of her and now she spends every day in a living hell filled with pain and misery, begging to be better, begging everyone to pray for her.

Six years ago, before Gardasil, life was very different.

Alexis Wolf before Gardasil
Alexis Wolf, age 14, before her first Gardasil injection.

 

Alexis Wolf after Gardasil
Alexis Wolf, age 20, six years after Gardasil.

 

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.

 

Are Safer Vaccines Possible?

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Perhaps, but only if we can admit that some vaccines cause injury and rework the entire vaccine development and monitoring system.

Vaccine Safety

Vaccine safety is a controversial topic, almost as controversial as politics or religion. In polite company, it is best not to bring up the subject, lest an all-out shouting match ensue.  On the one side, we have the pro-vaccine camp, who believes wholeheartedly that every vaccine is necessary and safe – ‘why else would they be on the market?’ is a common refrain. On the other, the anti-vaccine crowd, who for various reasons, are against vaccines. Some among the anti-vaxers are fundamentally against all vaccines as a matter of religious or libertarian principle. In their eyes, vaccination represents the worst of big government subjugation. It is an attack on their very freedom. Others in the anti-vax crowd come to their views experientially, through injury or tragedy.  Somewhere in the middle, the rest of us, parents, scientists, doctors and health advocates who are neither for nor against vaccines in principle, but who just want our kids to be safe and healthy.

Beyond For or Against

Much like the polarization of politics, the polarization of the vaccine safety and efficacy, all but nullifies reasoned concerns. One is either for or against vaccines. There is no grey area. This is fantastic for vaccine manufacturers because every concern, every injury can be written off by simply de-legitimizing the claimant – placing them in the nutty anti-vax camp, while correspondingly and overwhelming flooding the media with pro-vaccine marketing. Money does indeed buy power and power protects profits. With virtually all vaccines licensed manufactured by just five companies and revenues exceeding $25 billion annually and growing, the money and power are highly concentrated.

Stepping back though, away from the money and marketing, why anyone with a brain would believe that any vaccine or medication was universally safe and effective defies logic, not to mention the inherent variability of human physiology. To be entirely and ardently pro-vaccine as many are, one has to choose to ignore that basic fact – that for some people, some vaccines and medications either will not work or worse, will cause great injury. To ignore that fact, especially when there are no direct financial incentives to do so, one has to invalidate the tragedies that are in front of them; to convince oneself that the injured person before them is either lying to gain attention or simply is not credible and therefore not to be taken seriously. Either way, the net result of de-legitimizing injury, is to shutter the possibility of additional research, research that might find a connection. It’s quite a deft bit of cognitive dissonance, more so as the evidence of injury mounts.

De-legitimizing a claim of vaccine injury is easy; attack the person, not the claim, label the mom (because it is almost always moms making these claims) as irrational (hysterical), ignorant, and best of all, as anti-science; as if science is infallible and all-knowing rather than dynamic and changing. Ironically, bolstering the certitude of science, especially that which comes from organizations whose fiduciary or political obligations demand results remain in their favor, does more to reduce the credibility of the scientific endeavor and the public trust than simply admitting that sometimes the science is wrong or not nearly as clear as we once had believed. Polarization is more than just annoying and inconvenient. It is dangerous.

Skewed Development and Evaluation Process

As with the drug industry, especially after the recent Supreme Court decisions, the entire infrastructure of the vaccine industry is skewed in favor of finding vaccines safe and effective. There is very little space or motivation to find a vaccine dangerous. According to a recent report on Conflicts of Interest in  Vaccine Safety Research:

Fixing the Vaccine System – The Long Game

There is no easy or quick fix. The systems and barriers to vaccine, and indeed, drug safety are deeply entrenched in organizational and legal frameworks. The pendulum has swung so far away from consumer safety in favor of corporate protections that efforts to fix these problems must be viewed in terms of a long game; one that recognizes institutional and policy change has to take place over the next 10-20 years. The first step, however, is to recognize there is a problem and that vaccine injuries are likely within a system where there is little transparency and even less accountability for injuries.

The second and more difficult phase includes the major policy and infrastructure changes.
Those are a mess. Many are discussed in the piece Conflicts of Interest in  Vaccine Safety Research.  Many more need to be added. I will be writing a piece on this topic over the coming weeks. If you would like to contribute your thoughts on removing conflicts of interest from the vaccine safety and indeed, the entire drug development and review process, send me a note. In the mean time, we’re doing our part to understand Gardasil and Cervarix, vaccine safety and injury.

We Need Your Help

More people than ever are reading Hormones Matter, a testament to the need for independent voices in health and medicine. We are not funded and accept limited advertising. Unlike many health sites, we don’t force you to purchase a subscription. We believe health information should be open to all. If you read Hormones Matter, like it, please help support it. Contribute now.

Yes, I would like to support Hormones Matter. 

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Gardasil Cervarix Online Study Continues – Participate Now

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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.

Latest Gardasil HPV Research Fact or Fiction

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Recently, all the major media reported that the HPV vaccine was working. By their reports, the research showed a 56% reduction in HPV rates for vaccinated girls aged 14-19.

Even a decidedly feminist blog jumped on the bandwagon:

Perhaps one of the only reports to question the validity of these findings comes from an oncology blog for nurses. Assessing the Overall Impact of the HPV Vaccine – well worth the read. Leslie Botha from Holy Hormones Journal adds additional points of contention worthy of consideration. What the rest of the media failed to recognize and repeatedly fails to recognize either by want or by ignorance is that press releases are not often factually correct; something we write about regularly for Gardasil (here, here) and other medications or research (here and here). If a news or media organization is to report on medical and scientific research, they must be prepared to read and critically evaluate the actual research. Otherwise, they ought to label these reports what they are – advertisements.  Here is my take on the latest HPV research.

Behind the PR: Understanding the Research

Every couple years the Centers for Disease Control (CDC) and the National Center for Health Statistics (NCHS) sponsor what are called NHANES studies (National Health and Nutrition Examination Studies). These are health questionnaires sent out to a few thousand individuals deemed to be a representative portion of the population. Depending on the topic of study there are also laboratory based tests and/or in person followups at mobile examination centers (MEC). The study bandied about by the press, was published in the Journal of Infectious Disease (JID) by Markowitz et al., 2013. It compared NHANES data collected from 2003-2006, the pre-vaccine era and from 2007-2010, the post-vaccine era. An earlier study, also published in JID, but authored by Dunn et al. 2011, looked at the NHANES data from 2003-2006 and served as the foundation for Markowitz’s pre-vaccine/post-vaccine HPV analysis.

Background: HPV Prevalence and the Reported Reduction

Even a cursory reading of the Markowitz report – the report on which the PR suggesting HPV success is based –  immediately reveals problems. A deeper dive that includes the earlier JID study, the foundational pre-vaccine data to which the post-vaccine data is compared, demonstrates a statistical sloppiness that is difficult to attribute to ignorance. Numbers are missing, incorrect and misleading.

At the most basic level the data presented about the HPV vaccine’s effectiveness in the reported and marketed extensively by every major and media company are overblown and just a little bit hinky.  While it is true that the researchers report a 56% reduction in HPV rates in girls ages 14-19, that represents only a modest decline in the combined HPV rates (11.5% to 5.1%) tested. What the PR did not mention:

  • Other age groups saw an increase in HPV rates between the pre-vaccine era and post-vaccine era, suggesting that not vaccinating may be better
  • To arrive at this reported 56% reduction for the 14-19 year olds, the researchers had to combine the prevalence rates for each HPV strain tested (not all girls tested positive for all strains), then weight the results and transform – normalize the data to account missing data points and reign in the confidence intervals. The pre-vaccine prevalence rate of 11.5% was arrived at by summing the prevalence rate for each vaccine strain (HPV 6 was 5.4%, HPV 11 was 1%, HPV 16 was 6% and HPV 18 was 1.8%), but we would only know this if we pulled the 2011 study from whence the 11.5% figure came. Markowitz et al. did not annotate this figure. Not all girls had all strains and only HPV 16 and 18 are considered oncogenetic – potentially cancer causing.  Without noting how the 11.5% figure was arrived at and which strains changed from pre- to post-vaccine era, there is no way to determine whether the reduction from 11.5% to 5.1% came from the oncogenic or non-oncogenic strains. Nor is there any way to tell if the prevalence of certain strains increased over time instead of decreased. What if the observed reduction from 11.5% to 5.2% was largely based on HPV 6 – which initiates no more than genital warts?
  • From the total sample of 1363 pre-vaccine era girls and 740 post-vaccine era girls considered, girls from both time periods who were not sexually active and had no record of HPV or vaccine data were included in the original analysis reported in the PR. There was no stratification by these variables in the 56% improvement rate reported.
  • In secondary analysis, when HPV status was evaluated, only a very small sample size of sexually active girls in this age group (111 in the pre-vaccine data and 239 from the post-vaccine data, 8 girls from the post-vaccine sample had no HPV records) were included. These stratified data show that the rate of HPV was lower in non-vaccinated girls at 38.6% compared to 50% in vaccinated girls. So much for the most basic measure of efficacy.
  • The ages of sexually active versus non-sexually active by vaccine status were not given and thus, there is no way to determine whether vaccinating younger, non-sexually active girls has any protective capacity years later when the actual risk for HPV presents.
  • The error rates for some of the reported statistics, hailed as supporting the vaccines were over 30% (how much over, we do not know). Regardless, a >30% error rate is not a acceptable.

Read and Evaluate the Primary Research

Unless and until we get accurate and unbiased data from a large sample, that can be evaluated and verified independently, there is no way to tell if the risks of adverse events associated with this vaccine are reasonable and outweighed by the benefits of preventing cancer. Currently, data collected from the Vaccine Adverse events registry (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 VAERS contains only 1-10% of the total adverse events, the probability increased adverse events is high, so determining the benefits and the efficacy of this vaccine are important.

Who to Trust?

The more the vaccine industry, the CDC, the FDA and other agencies continue to promote truly spurious studies as relevant and proof-positive that a particular vaccine or medication is safe and effective, credibility is lost.  Without an effective counterbalance to the specious claims made by industry, consumers are left fending for themselves. What is perhaps the most dangerous result of this constant barrage of medical marketing and PR is that individuals who may truly benefit from certain vaccines or medications will avoid taking them because of the loss of trust. For the time being, you must pull the research, read and evaluate the studies yourself.

We Need Your Help

More people than ever are reading Hormones Matter, a testament to the need for independent voices in health and medicine. We are not funded and accept limited advertising. Unlike many health sites, we don’t force you to purchase a subscription. We believe health information should be open to all. If you read Hormones Matter, like it, please help support it. Contribute now.

Yes, I would like to support Hormones Matter. 

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