September 2013

Endometriosis and the Gut – What Monkeys Can Tell Us About the Disease

Published on September 30, 2013

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Female monkeys bred in captivity develop endometriosis at rates similar, if not a little higher (~20%) than those of the general population of women. Histologically, the endometriotic tissue in monkeys is identical to that in human women. Clinically, however, by the time symptoms present in monkeys or are recognized by their caregivers, the endometriosis has fully invaded the peritoneal cavity and the severity of the disease is often significant. With similarities in disease expression and because full medical necropsy (autopsy) reports are kept on all animals raised in captivity, investigating endometriosis in monkey may provide insight into this complicated disease process. Indeed, the few studies that have addressed endometriosis in monkey populations demonstrate clues overlooked in human research.

Risk Factors for Endometriosis in Monkeys

Like women, the risk factors in monkeys include, familial history, age, estrogens and environmental exposures. The link between estrogens, specifically estradiol implants, increases significantly with repeated exposures. Monkeys who have had more than three estradiol implants over the course of their lifetimes were nine times more likely to have the disease than their counterparts. Similarly, connections between environmental toxin exposures and risk of endometriosis have been noted.

An interesting finding in monkeys, perhaps not identified in humans, is a link between uterine surgery (hysterotomy), such as c-section or abortion and increased risk of ectopic endometriosis, by as much as five-fold. The theory being that the surgery ‘seeds’ the disease process by releasing the endometrial cells into the peritoneal cavity. Laparoscopic surgeries do not appear to increase risk, but the data are limited.

Gut Microflora

Like human women, female monkeys with endometriosis often have intestinal involvement with bowel movement irregularity, and as the disease progresses, visible endometrial implants along the large and small intestines. The presumption is that the damage to intestines arrives from the outside in; that is, from the endometrial tissue growth bearing down on the intestines and other organs. What if, there are factors within the gut that predispose or at least increase the risk or severity of intestinal involvement? It turns out, there may intestinal factors that influence disease progression – the intestinal microflora.

In recent decades, our understanding of the importance of gut bacteria has increased significantly. We know that there are good bacteria and bad bacteria and that shifting the balance between those bacterial populations can lead to a host of health problems. In monkeys with endometriosis, the balance of bacterial power is significantly shifted in favor of yeast over-growth, gram-negative microbes and general intestinal inflammation. Compared to healthy controls, monkeys with endometriosis had significantly lower concentrations of lactobacillus, the good bacteria combined with significantly higher concentrations of gram negative bacteria such as E.Coli, Salmonella, the families of Enterobacteria, Klibsiella and Proteus. Additionally, intestinal inflammation was more prevalent in monkeys with endometriosis than in healthy monkeys. Is there a connection between gut bacteria and endometrial pain or gut bacteria and IBS? With the former, there is still too little research to tell, but relationship between gut bacteria and IBS is becoming more clear.

Gut Microflora, Irritable Bowel Syndrome and Probiotics

Irritable bowel syndrome (IBS) and endometriosis often co-occur. IBS can be misdiagnosed or pre-diagnosed ahead of endometriosis. Research suggests altered intestinal microflora in IBS similar to that identified in the monkey research described above, with reduced lactobicillus bacteria in combination with increased gram-negative bacteria. Endometriosis was not a variable. Could probiotic treatment improve IBS and by extension endometriosis related intestinal symptoms? Possibly.

A recent double-blind, placebo controlled study investigated whether a six month treatment protocol with probiotics relieved the common IBS symptoms of abdominal pain, distension, bowel movements (diarrhea and constipation), flatulence and stomach rumble. The researchers found a median reduction of symptoms 42% in the probiotic group versus the placebo group. The largest and statistically significant reductions were observed in abdominal pain and distension with few significant improvements in the quality or constitution the the bowel movements.

Though probiotics are common supplements in complementary care, no studies that I can identify have looked at either the gut bacteria in human endometriosis patients or evaluated the use of probiotics with these patients. With limited research from the monkey studies, however, perhaps we ought to look at the role of intestinal microflora and in women suffering from endometriosis. At the very least, restoring the balance of gut microflora could improve overall health. Moreover, I can’t help but think that as more and more studies link endometriosis and autoimmune diseases to alterations in micronutrients like vitamins A, B and D, damage to and/or changes in gut microflora might be involved.

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Anti-Inflammatory, Diet Friendly, Lemon Poppy Seed Blackberry Muffins

by Kelsey Chin

Published on September 28, 2013

2778 views

Anti-Inflammatory Diet Friendly Lemon Poppyseed Blackberry Muffins, Endo Diet Lemon Poppyseed Blackberry Muffins

This recipe is adapted from one I tried when I first began my journey on the Endo Diet. I have since found out which foods are my triggers (gluten, dairy, and soy), and have added a few ingredients back into my baking. If you are just starting out with an anti-inflammatory diet, and are trying to detoxify your body of inflammatory foods, this might be a great one for you. It is hard to say goodbye to our comfort foods, and a hearty muffin goes a long way! This has bright flavor, light texture, and goes great with a little sugar-free jam.

The Endo Diet – Lemon Poppy Seed Blackberry Muffins

Ingredients (all organic):

2 cups gluten-free flour (I used Trader Joes’ brand)

1/2 tsp baking soda

1/4 tsp salt

2 eggs

2 egg whites

1/4 cup raw wild honey

1 banana, smashed

2 tbs olive oil

2 tsp vanilla

zest and juice of 1 lemon

1 tbs poppy seeds

1 cup blackberries

Instructions:

Preheat the oven at 350*.
Whisk flour, baking soda, and salt in a small bowl. Set aside.
Combine eggs, egg whites, banana, honey, olive oil, vanilla, lemon zest, and lemon juice with a mixer until well incorporated.
Add the dry ingredients in 3 batches, combining well each time. When batter is smooth, add poppy seeds.
Fold in blackberries and ladle evenly into muffin pan. My mixture made 10 muffins, filled almost to the top.
Bake 25 minutes, or until a toothpick comes out clean. Cool, and enjoy!

She Was Given DES and My Story Begins

by Holly Holman Patterson

Published on September 24, 2013

3511 views

My story is not special other than it is my story. My mother, a Navy wife, got pregnant with her first child on her honeymoon. Nine months later a healthy baby girl was born. Over the next six years she suffered miscarriage after miscarriage in an attempt to expand her family. Finally, late in 1954 she learned that she was once again pregnant. The doctors told her that there was a wonderful medication available to help support the pregnancy. She was given diethylstilbestrol (DES) and my story begins.

The Early Realities of DES

My childhood and youth were not very eventful. As an adolescent, I had very painful periods, though still not outside the norm. When I was 19 years old in 1974 my mother read an article in a woman’s magazine about DES, and the daughters who were now having health concerns do to DES exposure. Recognizing that she had taken DES during her pregnancy with me, she told me that I should be evaluated by a physician. Up until then I had never had a PAP test or any pelvic exam. I was young, modest, and naive. My innocence was gone in the sterile clinical exam room. Medical history taken, laying down on the hard table, feet in the stirrups I was poked, prodded, and then scraped for samples of cervical cells. Then the doctor asked for the colposcopy equipment to be brought in. Wheeled into the room, my insides were stained, and then magnified. Finally, when the abnormalities were found, the camera attached to the colposcopy machine documented the DES damage. I was now a DES Daughter.

These exams now became an every 6-month ritual as I was told “you will get cancer, it isn’t a matter of if, but when.” They wanted to catch the cancer (Clear Cell Carcinoma) the moment it turned. After a few years though with no changes they had started relaxing their prognosis. I was allowed to go in for these exams once a year. Still cautious, but more optimistic, I starting living my life as a young woman. I dated, fell in love and got married.

Starting a Family as a DES Daughter

When my husband and I decided to start our family, I had been given no warnings about the potential issues with pregnancy combined with my DES exposure. My fertility was good, I got pregnant right away. The pregnancy also went smoothly until the 22nd week of gestation. I was feeling nothing different, enjoying the growing baby I was carrying. Without warning my water broke. Quickly I called my Ob/Gyn who dismissed my experience. “Perhaps you just lost bladder control, not unusual.” I knew it was not an issue of bladder control, so I went in to his offices. It was the lunch hour, the offices were quiet and the staffing short. I was taken back to an exam room and waited. I waited a long time, and finally, the dismissive doctor came in to examine me. He tested my discharge and his affect changed at once. He called over to the hospital and had me admitted at once.

DES Exposure Claims its First Victim

I was observed for several days, with no changes. Finally contractions started, and at 22 weeks I delivered a nearly one pound baby boy. He died during the delivery. The DES exposure had taken its first victim.

DES Exposure Claims its Second Victim

A few months later, back in the sterile exam rooms for more testing, I was found to have a very incompetent cervix. I was told that I would be considered a high risk pregnancy from then on, though they felt there were options to help me carry a baby to term. With the blessing of the doctors I became pregnant again, and this time a cerclage was placed in my cervix to help support the pregnancy. When the doctor came in to see me just after the cerclage was placed, his face was long. “Your cervix is very weak. You are only 11 weeks pregnant, but already you are totally effaced and starting to dilate. You will need to be on total bed rest, and make the pregnancy last as long as you can.”

With that I was sent home and spent the next 12 weeks in bed. At 23 weeks I started spotting and having contractions. I was taken to the hospital where they tried to stop the labor, but could not. I delivered my second child, a son who was 1 lb 8oz. with paper thin skin. I could fit my wedding ring over his hand and up his arm. We were told to expect him to die within an hour of birth due to his prematurity, but he didn’t. He lived an hour, then two then four. Finally they decided to transfer him to a NICU unit in a larger city about 2 hours away by car. I was alone on the maternity floor, mothers nursing babies, walking the halls calming fussy babies, and my child was a fragile package whisked out of my sight, and off to another hospital far away. Tyler lived for 10 days. He fought hard for life, that one and a half pound baby boy. In the end, death won, and DES had taken its second victim.

We Tried Again and Succeeded

I took a few years off from trying to start a family. I had grieving to do..and healing. I finally went up to the Medical school where I was first diagnosed as DES exposed and put myself in their care. There was one surgery they thought could offer me hope of having a child. It was a rare experimental surgery called a “Trans abdominal cerclage”. The procedure was so rare that they asked to film the surgery because there would be medical students who would not see a case like mine during their education. I agreed. So, I once again became pregnant, and at 11 weeks of pregnancy, I went back to the medical school and had the trans abdominal cerclage placed. Because of my medical history I was told to go to bed again and make the pregnancy last as long as I could. This procedure was a good fix. I carried my third child to term. Four years later I put myself in their care and had my last child, again at term. These two children are now young women. I feel blessed for the good medicine that allowed me to have these children.

I Am a DES Daughter

DES did not stop with my body, or my children’s lives. My mother has been diagnosed with breast cancer, something that her DES exposure has put her at risk for. She has had treatment and it looks as though DES will not get to claim her as yet another victim.

My innocence was taken by DES. My first two children died due to DES. My mother has suffered due to DES. I do not consider myself a victim of DES, however, I am a DES Daughter.

Carrot and Honey Crisp Apple Soup: Anti-Inflammatory Diet Friendly

by Kelsey Chin

Published on September 20, 2013

3241 views

Several years ago, I worked in Downtown Boston for a large corporation. Every so often, I bought lunch from the small cafe in the main lobby. The food was cheap, fast, and fairly delicious. The best thing on the menu was an item that came only once in a while: carrot soup. It had the best mixture of tart, spicy, earthy flavors that warmed me to my core on freezing Northeast winter days. I’ve been attempting to replicate it at home, and I think I finally managed it! And the best part is, it is anti-inflammatory diet friendly!

There are two secrets to this soup; the first being perfecting that tart, warm “something” that has been so difficult to capture. This is a mixture of fresh apples, scallions, spices, and plenty of simmering. Rather than putting everything in a pot of water, which dilutes the flavor, this is added to the base (carrots) in a food processor near the end.

The second secret ingredient is flax seed. This is the perfect way to add an earthy, nutty flavor, while packing a big nutritional punch. Flax seed is said to have the same nutritional benefits as a whole grain, but without the starches and sugars of wheat or rice. It is packed with Omega-3 fatty acids and fiber. Omega-3 fatty acids play a key role in suppressing inflammation. Flax seed may also play a part in uterine health. I did also add some brown sugar, which I have not found to be an issue in my endometriosis inflammation; however, for a true anti-inflammatory diet, you would not add this ingredient, but use honey instead.

Something I learned while making this recipe is I am definitely going to keep coconut oil and related products to a minimum. I used coconut cream in my recipe because my husband bought a can last week, and I figured I’d try it out. I am going to recommend you do not. Although I’ve been reading all these great things about coconut oil, I did my research tonight and found that coconut oil and coconut cream are inflammatory foods. They are far healthier than say, cream or olive oil, and added a great texture to my recipe, but next time, I think I’ll leave it out.

Carrot and Honey Crisp Apple Soup

Ingredients (organic):
1 lb carrots – chopped
2 large honey crisp apples – peeled and chopped
2 large scallions – chopped
2 cinnamon sticks
pinch of garlic salt
1 tsp ground ginger
2 tbsp whole flax seeds
2 tbsp brown sugar, or 1/3 cup honey
1 cup rice milk
sprig of fresh cilantro

Directions:

Boil carrots in a large pot until tender. In a non-stick frying pan, saute scallions over medium heat, then add apples, ginger, and garlic salt. Continue to saute until apples are tender. Reduce heat to low, add cinnamon sticks, cover, and simmer for about 20 minutes, or until the mixture thickens and is fragrant. When carrots are tender, drain and place in your food processor. Pulse for about a minute. Add apple mixture and process about 2 minutes, or until creamy. Remove to large pot. Pulse flax seeds and brown sugar, then add rice milk and 1 cup of soup base, and process for about 20 seconds. Add back to the large pot and stir until incorporated. Serve with drizzle of rice milk and sprinkling of cilantro.

Post Gardasil POTS and Thiamine Deficiency

by Derrick Lonsdale MD, FACN, CNS

Published on September 18, 2013

19239 views

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

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

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

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

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

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

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

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

Publications and resources from Dr. Lonsdale:

Resources for Understanding Thiamine Deficiency

Molecular Mechanism of Thiamine Utilization

Participate in Research

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.

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

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

by Susan Flood

Published on September 18, 2013

5766 views

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

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

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

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

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

Participate in Research

Hormones 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.

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

Marketing the HPV Vaccines to Prevent Cervical Cancer

by Judy Wilyman, MSc

Published on September 17, 2013

3514 views

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

Low Risk for Cancer

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

HPV is Common

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

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

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

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

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

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

Participate in Research

Hormones 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.

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

Post Gardasil Dysautonomia: Nina’s Story

by Francine Pugliese

Published on September 16, 2013

8727 views

Our story begins in late May of 2007. I took my daughter Nina to the pediatrician for her 12 year old checkup. During the visit the doctor proposed that I have Nina receive the first vaccine of Gardasil. I immediately told him that I was not well informed about this new vaccine. He reassured me that it was fine and better to get it while she was young. I trusted my doctor. As we left the office, I had this strange feeling come over me. I started to question myself about my decision to allow the doctor to administer a vaccine that was new to the industry. My daughter was 12 years old and what was the rush to protect her against a sexually transmitted disease? Maybe it was mother’s intuition, but I suddenly felt sick to my stomach.

The Early Signs of Illness Post Gardasil

In early July, Nina started complaining of her hair falling out. Nina is beautiful Italian with long thick brown hair. As a mother of three, and Nina being the youngest, I often play down any medical concerns of my children until I see a true problem. I put her to ease by telling her that with her amount of hair it is common to see more of it in the shower or on the bathroom floor.

Over the next few weeks Nina started to complain of flu like symptoms. She would wake up very fatigued and nauseous. The symptoms were intermittent, but becoming more regular as the weeks passed. I did start to notice an abundance of her hair on the bathroom floor. I was becoming concerned. By August, her complaints were becoming more severe. I took her to the local Med Express and they told me she was very dehydrated and they administered IV fluids. Nina felt great and I felt relief.

The next morning, the symptoms returned. She missed the first week of the new school year. The next week I started driving her to school because she was too sick to get on the bus. The school was only five minutes away but by the time we got there she was already too sick to get out of the car. My first thoughts were maybe she was having some type of anxiety about her seventh grade. It did not make sense to me. Nina was a very active child who was always laughing and playing with friends. Her relentless love of basketball always kept her on the go. She played on three different teams.

A Mother’s Intuition

She tried to muddle her way through the first semester of school, but was losing the battle. She was becoming ill at all times of the day. She would sleep on the bathroom floor hoping not to vomit one more time. I made repeated visits to the pediatrician’s office and pleaded with them to help our child. Thoughts were running through my head as to why she became ill so suddenly. Then I remembered my mother’s intuition moment and realized our world began to change after the Gardasil vaccine. The pediatrician was in agreement that we would not proceed with the second dose of the vaccine due to Nina’s illness.

Searching for Help

The next year was filled with illness, doctor’s appointments, diagnostic tests, multiple medications, multiple diagnoses, and many, many disappointments. We were told she was suffering from, Vestibular hypo function, Meniere’s disease, tonsillitis, and last but not least, a mental illness.

My husband and I were baffled. No matter what medicine the doctor’s prescribed for our daughter, her illness continued to invade her body and turn our worlds upside down. We finally caved in and took her to see a psychologist. The psychologist commended Nina for dealing with this confusing illness in such an adult manner. She reassured us that Nina seemed well adjusted and saw no reason for any type of treatment. How could our healthy child who played basketball 24/7 and aspired to play basketball in college dwindle down to a chronically sick child who was now on home bound study with no social life? Most of her friends drifted away as her illness seemed invisible to them, as there was no visible signs such a blood spouting from an artery.

We then decided that the traditional medical community was not helping so we decided to try a naturopathic route. We were told it was coming form an adrenal problem and were given vitamins, detoxifying foot baths, and massage therapy know as Reiki. All were complementary, but did not give her any long term relief.

Time marched on and in April of 2009 we stumbled across the television show Mystery Diagnosis. This particular episode was describing Nina exactly. This was the first time I had ever heard the word dysautonomia. I immediately went to the internet to research this illness. I found no specialists in the Pittsburgh area. I began calling every specialist within the United States and faxed all of Nina’s medical information to their offices. We took the first available appointment from the first specialist to return our call.

Finally a Diagnosis: Dysautonomia

Nina was finally diagnosed with dysautonomia by Dr. Hassan Abdallah at The Children’s Heart Institute in Reston, Virginia. As sad as it may sound, we were delighted to finally have a name for her illness. The pieces of the puzzle were starting to come together. Dr. Abdallah started her on blood pressure medication, followed by a vasoconstrictor medicine, followed by a medicine used for people with Attention Deficit Disorder. These medicines all help push more blood to the heart and brain, thus making her illness less violent. Typically, people with dysautonomia do not perform well in the morning. It takes hours for their bodies to function and begin their day. Even though we had a diagnosis for Nina, we still could not get her back to functioning like a teenager. We continued our battle by getting a second and third opinion from The Cleveland Clinic and Case Western Medical Center. It was at Case Western that a doctor finally admitted that they had seen an increase in dysautonomia since the Gardasil vaccine was introduced.

She also takes melatonin to sleep at night. She constantly has issues with low Vitamin D which requires a prescription dose of the vitamin periodically. She takes an anti-nausea medicine as needed. She has recently been diagnosed with PCOS (Polycystic Ovary Syndrome) and insulin resistance. She combats all this by pushing herself to exercise with a trainer who specializes in strength and heart rate monitoring.

I have researched Gardasil and the facts against it are astounding.

Why would the FDA place a vaccine on their fast tract program (which means it only requires six months of research) if this vaccine was being administered to little girls?
Why are there over 2000 class action lawsuits against the manufacturers because of debilitating side effects and even death?
Why do the manufacturers constantly ignore the facts of websites such as Truthaboutgardasil.org?
Do they really think that all these people are just complainers and really don’t want to have a normal life?

We are currently seeking information about a new procedure called Transvascular Autonomic Modulation. It is an invasive procedure where they feed a catheter through the jugular vein and stretch the nerve fibers near the vagal nerve. This is said to reset the autonomic nervous system, thus giving patients relief of symptoms. It does have a 75% success rate. It is only performed by an interventional radiologist in California.

Six Years Post Gardasil

Nina was on the home bound program for high school. She never got to play on her high school basketball team. She never got to attend any proms. Regardless of the adversity she faces, she managed to graduate with a 4.0 GPA. She now attends the University of Pittsburgh at Greensburg as a full time student. She struggles through each and every day with the perseverance of a soldier. Her strength and relentless integrity to live her dreams inspires everyone who has the pleasure of knowing her. The light at the end of the tunnel is that most people with dysautonomia will out-grow it. The doctors agree that Nina’s case is severe and it may be much longer before she gets relief from most symptoms.

Lessons Learned From Gardasil

Gardasil has taught us some valuable lessons. First, never think your doctor knows everything. They are human. They work for you. If you have questions, never stop asking until you are satisfied. Always trust your gut feelings or mother’s intuition. We are better people because of this illness. We no longer take life for granted. Our days of long hours at the gym watching basketball games and striving for the most points and the biggest scholarship have been traded in for a day of no pain or a friend who cared enough to spend some time doing nothing with Nina just because she is a fun person when her symptoms simmer down. Never judge a person with an invisible illness. Everybody carries some type of a burden in their life. Lastly and most important, we trust God has a plan and we will continue the battle until his will we be done.

Participate in Research

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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