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Archive for the ‘rashes’ Category

Marian’s Story (Australia)

Most of my adult life I have lived with the knowledge that I am at increased risk of cervical cancer. As a DES Daughter I have a lifetime risk of a rare clear-cell cancer of the cervix/vagina. This cancer, causally linked to in utero exposure to DES, is aggressive, symptomless and the usual Pap smear will not pick it up. I have to have an annual “DES examination” that involves colposcopy.  (For more on the DES story: www.desaction.org.au )

In addition, also because of my DES exposure, I have a 4-fold increase risk of squamous-cell cancer of the cervix – the cervical cancer the Pap smear is designed to detect.
Since first finding out I am a DES Daughter (nearly 30 years ago) I have learnt to live with this risk, to put it into perspective and get on with my life. Part of this process involved becoming informed about cervical cancer by reading medical journal updates. More important, however, was the sharing of experiences with other DES daughters. In this way over the years members of DES Action have built up a unique knowledge base and “expertise” of cervical cancer, from the consumer perspective.
So when there was news of a “cervical cancer “vaccine being developed, we naturally were very interested and read up on it. However, the more we read, the less sense it made. It wasn’t a “cervical cancer” vaccine but a part-vaccine for HPV. The unanimous consensus we came to was “Why bother?” [As outlined in ‘Gardasil: All cost and no benefit.’]
We were very concerned about the “hard sell” the pharmaceutical industry was using to put pressure on the Government to have Gardasil listed on the National Immunisation Program.
But our greatest concern, based on our DES experience, was the lack of evidence of long term safety of the drug. Could Gardasil, like DES, be a time-bomb with serious, unforeseen adverse outcomes emerging months, years or even decades after the initial injections?
Here is an extract from DES Action’s newsletter DESPATCH, March 2007:
Gardasil: Hype & Hard Sell
by Marian Vickers
Last November saw the most extraordinary example of manipulating the media for commercial gain when CSL, which shares Australian marketing rights for Gardasil with Merck, orchestrated the listing of this new cervical cancer vaccine on the National Immunisation Program.
CSL’s initial proposal was rejected by the Pharmaceutical Benefits Advisory Committee (PBAC) because of “uncertainty about the duration of effect and unfavourable cost-effectiveness.”
All hell broke loose and the first casualty was informed public debate. What followed was emotive, sensational lobbying and political opportunism, culminating in political interference from the highest level when the Prime Minister, John Howard, intervened and effectively vetoed the PBAC decision.
This “decision-making by media” has compromised the PBAC and potentially Australia’s drugs safety system.1
The lack of informed public debate has made decision making difficult on a personal level. Many parents will be wondering whether to recommend the vaccine to their daughters. Given that the vaccine is targeted at young teenage girls, there is an issue of informed consent. Next month the school immunisation program commences and consent forms will be sent home. How are parents meant to make an informed decision on behalf of their daughters? Just how effective and safe is this vaccine?
Because of the DES experience, I’m most interested in looking at drug safety. A concerning aspect of the debate on Gardasil is the lack of information on its safety, particularly long-term safety.
In the media, any mention of ‘safety’ is in fact talking about ‘efficacy’ – i.e. will the vaccine work for a lifetime, or is a booster necessary? Worryingly, in the government “fact sheet” for health providers, there are only 2 sentences relating to ‘safety’:
“Gardasil is generally well tolerated, with a small increase in reports of injection site reactions and fever compared to aluminium containing placebo (injection site reactions 83% vs 73%, fever 13% vs 11%). Very few serious adverse reactions were reported in clinical trials.” 2
There is no information on how long the clinical trials went for, and whether any large-scale trials were conducted on 12-13 year old girls.
Given that there is going to be wide-scale immunisation of thousands of young girls starting next month, the health authorities better be very sure there will be no unforeseen, unexpected side effects in the future. It would be truly tragic if the young girls receiving the vaccine faced an increased risk of, for example, infertility or autoimmune disease in 5, 10 or 20 years hence.
Hopefully animal modelling studies have been done to rule out this possibly.
References:
1. Gina McColl: ‘Health care’s sticking point’, The Sunday Age, News Extra 12, February 25, 2007
2. Fact Sheet ‘Human papillomavirus vaccines for Australians: Information for GPs and immunisation providers’, National Centre for Immunisation Research and Surveillance of Vaccine Preventable Diseases, page 4, September 2006
From DESPATCH #54, March 2007, page 1

At the time of writing this my 2 daughters were aged in their early 20s and therefore not part of this school vaccination program. I might have mentioned in passing that I thought they didn’t need Gardasil, but I didn’t make a big deal of it.
What I didn’t realise was that the “hard sell” had been extended and was directly targeting all young women. During 2007 every time my daughters went to the doctor for some other reason, they were urged (one could almost say harassed) to have their Gardasil shots. They each received letters from various medical centres they had attended in recent years. These letters were sent out to all “eligible” young women urging them to have Gardasil while it was free. [I only found this out later as my daughters were not living at home but sharing a unit a couple of suburbs away.]
My younger daughter, aged 24 years, had the first 2 shots of Gardasil in late 2007. In March-April 2008 she had to take a number of sick days off work due to extreme tiredness and lethargy. She had a test for glandular fever (it was negative) and upped her intake of vitamins. Luckily she didn’t get around to having her 3rd shot of Gardasil and, after seeing what happened to her sister, she gives a serve to any doctor who suggests it!
My elder daughter Zoe was fit and healthy in May 2008 when she passed a thorough medical examination. Two months later – and one month after receiving the 3rd Gardasil injection – she was a housebound invalid: she couldn’t walk, drive or work.
I bought her a “health diary” and she recorded her symptoms, what she ate and what medication she was on. Looking back over this diary I don’t know how we got through those following weeks. I’m just so impressed with Zoe’s strength of character.
Her symptoms started off with a terrible rash (urticaria) which she had every day for 7 months. Her face would swell up (angioedma) so she looked like a boxer who had lost a fight. Her tongue had strange bald patches on it. She was having weekly blood tests. Initially these were normal but then her CRP levels (an indicator of inflammatory disease) were elevated and getting higher by the week. Her wrists and hands were swollen like severe rheumatoid arthritis. They ached and she had trouble holding things. Her knees and ankles were swollen and aching. The soles of her feet were so swollen she couldn’t walk and could only hobble short distances. There was inflammation of connective tissue and more tests were ordered looking for Lupus. By the end of July she started getting indigestion, gastric problems, severe abdominal pain and gastric reflux. She had 3 episodes where her throat swelled up and she had trouble breathing. In early September, while being examined by a Rheumatologist, a suspected heart murmur was picked up and she was sent for more tests. When she’d had the medical 4 months previously in May there was no heart murmur present.
Any one of these symptoms is painful and difficult to deal with.  To have them occur suddenly, all at once, and with increasing severity was distressing and very frightening -particularly when the treatment (high doses of antihistamines) wasn’t working.
During this time Zoe’s younger sister was put under enormous stress as she had the responsibility of looking after Zoe on a day to day basis.
A breakthrough, in terms of understanding what was going on, came mid- August when we were given information on Ketotifen, a mast cell stabiliser. Apparently people with chronic urticaria and angioedma do not suffer from specific allergies, but rather an unstable mast cell system. According to the fact sheet, the unstable mast cells leak histamine, prostaglandins and leucotrienes, which result in other associated symptoms. For example, due to the release of these chemicals, patients also suffer from headaches, tiredness, lethargy, irritability and difficulty in concentration. It can also affect the gastro-intestinal tract causing cramping, bloating, indigestion, regurgitation, flatulence, intermittent diarrhoea and constipation. Many patients suffer from joint pains and muscle pain. These symptoms are due to the inflammatory properties of leaked histamines, prostaglandins and leucotrienes.
As the Clinical Immunologist we saw in October explained, unstable mast cells underlie autoimmune responses. So finally we had a diagnosis of Zoe’s condition that explained the symptoms – chronic uritcaria/angioedma, an autoimmune response due to an unstable mast cell system.
Having a diagnosis was only the beginning of the journey. Doing a rush job on reading up on the immune system and autoimmune disease left my head spinning.
Quite by chance the ABC TV program ‘Catalyst’ ran a special on ‘The Immune System’, 7 August 2008. The gist of the program was that our immune systems are fantastically complex, responsive and adaptive. Science is only now starting to unravel the wonders and complexity of the immune system.
Even more complex is the autoimmune response: this is when the body’s immune system defences turn back on itself and start attacking healthy cells and tissues. Autoimmune diseases include asthma, rheumatoid arthritis, irritable bowel, motor neurone disease, multiple sclerosis. What triggers this autoimmune response is unknown. Why some people get it and others don’t isn’t understood.
That’s why I get so angry when I think about Gardasil. Here we have a vaccine which deliberately meddles with the individual’s immune system. It is a new type of vaccine never used before. It uses new technology – recombinant DNA technology (which is like cloning) – to trick the immune system and artificially rev it up. No thought of triggering an autoimmune response, all they look for are injection site redness and fever within 24 hours. How dare they! Talk about irresponsible cowboys. Boys with their toys!
I think the diverse and varied adverse reactions to Gardasil may be immune responses. Our immune systems have evolved over eons. We are programmed with primitive survival reactions. Everyone has heard of the “fight or flight” reaction. However it appears there may be a 3rd primitive programmed reaction: “freeze”. When studying humans under extreme duress, researchers have found that people often become lethargic, they freeze up, shut down, becoming limp and still. This may be a primitive survival response – playing dead may discourage a predator from attacking. [Refer to ‘The Unthinkable: Who Survives Disasters – And Why’ (2008) by Amanda Ripley]
So maybe the many reports of girls fainting or experiencing temporary paralysis can be explained as an immune response – a response to the assault on the immune system by Gardasil.
It’s time to start asking questions of the drug manufacturers and the drug safety authorities. Specifically, exactly what studies were done prior to its release to show Gardasil is safe, that it doesn’t trigger immune/autoimmune responses? Where is the evidence of its safety?
Marian Vickers, Convenor DES Action Australia

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Hi, my name is Rebecca and I am 26 years old.

I have had problems in the past with cervical cancer cells, resulting in 2 lots of different laser treatment to try to eliminate the problem. When I heard about the Gardasil injection, I thought I don’t want to have to go through another treatment again, so lets look into it. I went and saw my local GP who found out the in’s and out’s of the injection and advised me that I was a prime candidate to receive it.

After the first, I started to notice a few changes: nausea, fatigue, mood changes, weight gain, etc.

When I received the 2nd injection, everything just fell apart. I went from a very happy, out-going person to a moody, irritable, constantly sick person. I had a really good full time job, in which I was managing a small business. I had to drop back to 3 days a week, and even that was to much to handle. I was so exhausted all the time. Even with the vomiting and loss of appetite, I gained 10kgs in 3 weeks. I was bloated, had severe migraines, dizziness, chest pains and mood swings. But the best of all was the rash.

I broke out in a huge rash overnight, which started on my face and continued down to my toes. It wasn’t your normal rash: they were huge open weeping blisters. The only comfort I could get from them was to cover myself in methelayted spirits; it was the only thing that would take away the itch.

The first doc I saw told me I had a shaving rash and I should use a different method of hair removal. The 2nd doc told me to leave his office as he didn’t want to know about it! Then I went to see a dermatologist who told me I had mental issues and to go and see a therapist.

The only help I did receive was from a naturopath in Sydney who put me on a heavy program to boost my system and it was the only thing that improved my problems.

I have to admit, several times through all of this ordeal I was so down and depressed, I did think about ending it all. I was just at my wits end!

This was nearly 12 months ago. Today I am feeling ok, I have my good and bad weeks. The rash has still continued, and my legs are so scared now I will never be able to wear anything short again.

I want to share this story with all the young girls out there wondering about getting this injection. I want you to see what it can do to you. They have not done enough research on this injection to see if it actually does work, there is no proof that it works. I would much rather go and have a pap smear, then go through the pain I have had with this injection. It is not worth it.

Rebecca

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My Daughter Shelby (14) had the Gardasil Shot. She was fine for a short while, then started to vomit everyday for a month, with a low grade fever, abdominal pain and fatigue. The pain increased and was unbearable in her abdomen and in her back and she was hospitilized for a week. During that time her kidneys started to shut down.

They tested her for everything under the sun, Head MRI, Abdominal/Pelvic Cat Scans, tests for Lupus, Chrohns, Mono, Strep, Carcinoids syndrome, Endoscopy and Colonscopy to name just a few. She also started to develop a strange bright red rash on her face, neck and chest. She also developed high blood pressure during this time and had to be put on blood pressure meds.

After her release the abdominal pain lessened, however, she had periods throughout the day where she felt as if she was going to pass out. The rashes continued. Extreme fatigue. Then the abdominal pain started again. It was awful to have it return when we thought she was on the road to recovery. She would curl herself up in a ball and scream, it hurt so bad. She was again hospitalized. The pain always started in her upper left hand side of her abdomen. The doctor said that nothing was technically there, but they repeated the MRI, and did a stomach emptying test. None of the tests showed anything.

The doctors started to say that she was “Stressed” out, and needed a psych consult, because they couldn’t find anything. (Doctors cop out when they can’t identify the cause.) This encounter left Shelby sobbing. She left the hospital still in pain with no diagnosis. It was heartbreaking.

Our family in California urged us to try to find someone there to help Shelby (we are from Omaha), so we packed up the kids and went over there. She had severe abdominal pains when we first arrived there and ended up in the emergency room once again, CAT Scan negative. She was ill for three months straight in and out of hospitals, doctors offices, and specialists.

She is finally doing better, with the help of a nutritionist, who had to do intensive work with her, both Chiropractic, and supplemental to repair a condition called Intestinal Permeabilty or Leaky Gut. Her body basically was so inflammed and ill, that when she ate her body thought that the food or was some type of an invader and her immune system was fighting to respond to it.  It was just so over-run with these toxins that it couldn’t handle normal functions.  It was awful to watch her go through.  Some traditional doctors are so short minded that if they don’t find a typical diagnosis they just stop looking.  Thank God for other options.

Please do not allow any doctor to give this medication to your girls. It has been a horrible struggle for our daughter and our family as a whole. Research, read testimonies. It has not been proven, most doctors don’t know anything about this shot. They only know what Merck is releasing, which paints a very rosy picture. This picture doesn’t show how truly devastating this drug is. It is destroying lives. Many girls are affected worse than my daughter.

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Hello. I want to tell you about my 11 year old daughter Mikaela and her reaction to Gardasil.

Mikaela went to the doctor for a physical in July 2007. The Dr said she needed a 2nd Varicella vaccine and the new Gardasil vaccine. I thought she was too young for it. I was told it’s better get it now before it’s too late. I read the brochure that was given to me and consented for her to have it. The only side effects mentioned were soreness at the injection site.

There were no immediate side effects.

Approximately 2 weeks later she got a rash on her face, neck and chest. Her face swelled so badly that her eyes were shut. I took her to the doctor and asked if it was poison ivy or something similar. She said No. She thought Mikaela had Lupus so she did blood work and a urine test. Mikaela had protein in her urine. So we were referred to a kidney specialist. The blood results said Lupus was negative. Mikaela was started on steroids for the rash. We did several urine test throughout the following weeks. We saw the specialist. By then the protein was gone. He doesn’t know what caused it.

She started having migraine headaches around the time of the rash, also complaining of fatigue and a stomach ache.

Mikaela received the 2nd dose of Gardasil in September. The migraines, stomach aches and fatigue continued.

She got the last dose of Gardasil in January. The same symptoms continued. I asked to be referred to a endocrinologist to check on her thyroid.

In early February we got to see the endo. We knew she had a goiter but it was small and wasn’t causing any trouble. All of her blood work had been fine. She measured the goiter and checked her TSH levels. They were low. She was prescribed Synthroid.

The fatigue, migraines and stomach aches continued.

On February 29th, while sitting at the computer playing a videogame, she had a seizure. My younger daughter Emily said she was making funny noises (sort of like snoring) then slumped over in the chair. After repeated attempts to yell at her she wouldn’t wake up. She jerked, snapped out of it and started crying. She said she didn’t feel right and didn’t remember anything. She was complaining of a bad headache and stomach ache. I called her paediatrician. She said take her to ER at Children’s Hospital. She was so sleepy. She slept the hour and a half drive to the hospital. She was drowsy while we were there, then slept all the way back. Once we got home she went to bed and slept thru the night. The ER Dr said she had a fainting spell. It wasn’t a seizure since she wasn’t jerking, biting her tongue or falling out of the chair. They did an EKG and sent her home with a seizure booklet.

We followed up with the paediatrician. She said Mikaela simply fell asleep. She agreed with the ER doc about the jerking and etc…. she sent Mikaela for an EEG. Those results were normal.

I told the paediatrician that her migraines are still happening so she scheduled an MRI and referred us to a neurologist. The MRI results showed some swelling in the sinus cavities. He was more worried about all the school days that she has missed (30 so far). He prescribed Maxalt.

She also had a low grade fever for over a month. No explanation why she was having it. It went away about a month ago. Now its back. She is still experiencing daily fatigue. The stomach pains and migraines are happening less.

I blame the Gardasil for causing her problems. This is a child that was normal and healthy before getting the vaccine.

I wont make the same mistake with my younger daughter!!!!

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