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The Flu, & a 'Shot to the System'
The Loudoun lowdown
By Nicholas Graham
Desiree Jennings can whisper softly, but not talk loudly.
She can run a 3K, but can’t walk 5 feet normally.
She can move sideways and backwards, but not forward.
Desiree can still hope and dream, but realizes that her life the way it was may never come back.
Desiree is a “one in a million” person. Tragically so.
She is “the one”.
Apparently, the one person in a million, according to the Centers for Disease Control (CDC), who may have developed severe and possibly life-threatening side effects from getting a seasonal flu vaccine seven weeks ago at a Safeway in Reston.
It’s easy to understand why Desiree felt compelled to get a flu shot. Warnings that this fall would see a harsh seasonal flu season, compounded by growing concerns about the impact of the new H1N1 ‘swine’ flu – have driven healthy people to get inoculated, and especially those in defined high-risk groups.
Then, the statistics: 36,000 die annually of the seasonal flu; 200,000 people will be hospitalized with the flu; and over 100 million seasonal flu vaccinations will be given. Already, since August 30, the CDC reports about 950 people have died from flu-associated pneumonia or flu symptoms.
Desiree, a young, healthy and active 25-year old resident of Ashburn, says she was not in a high-risk group, had no pre-existing, underlying health issues, and was not on medication at the time of her shot.
Since April, Desiree has also been a Washington Redskins “Ambassador” – a physically-demanding job that trains you to one day become a full Cheerleader.
As for the seasonal flu shot, she got it to earn ‘healthy living’ points for her work health plan that gives perks for each level of ‘wellness’ that is attained.
The shot in the arm itself, on August 23, was uneventful. Ten days later, Desiree says she got flu-like symptoms – fever, vomiting, weakness in her legs, and body aches.
On returning to work at AOL after Labor Day, she was even more fatigued. She passed out at work, and then again at home. Her husband, Brendan, rushed her to Urgent Care nearby as Desiree went into convulsions. She was immediately transferred to Loudoun Hospital, where she spent three days.
The doctors ran test after test, and asked question after question. She was screened for Lyme disease, Lupus, and other ailments. All came back negative.
Desiree proceeded to go back to Loudoun Hospital, then Fairfax Hospital, then Johns Hopkins in Baltimore to see specialists. None could give a diagnosis. She estimates she has seen 60 medical personnel since mid-September.
Desiree has seen her primary care physician, physical therapists, speech therapists, neurologists, neuropsychologists, psychiatrists, and a bevy of nurses.
Amazingly, it was her physical therapist at Johns Hopkins who provided the latest, clinical diagnosis as to what Desiree has: Dystonia.
While sounding like a fictional land from a J. R. R. Tolkien novel, Dystonia is a neurological movement disorder where sustained muscle contractions cause body jerks, and abnormal or repetitive movements. The disorder may be inherited or caused by other factors such as birth-related or other physical trauma, infection, poisoning, or reaction to drugs, particularly neuroleptics - according to the National Institute of Neurological Disorders and Stroke.
It has also received attention in a film by PBS called “Twisted”, and in news stories on MSNBC.
Dystonia requires the learning of a new way of living, and re-learning even the most basic routines. It’s also rare, and not completely understood. As for cures – none exists. As for treatment, it’s basically limited to minimizing symptoms of the disorder.
Desiree is in the process of trying out a cocktail of medications, to see what mix works. “Sensory tricks” also help manage the spasms, though she is still afflicted by a handful of serious seizures and convulsions, and 20-30 minor ones, every day.
In one incident weeks ago, as Desiree started to head into another gripping seizure while navigating the stairway inside her home, she slipped. As she began to fall, her husband Brendan leapt to catch her – in the process breaking his foot, and ensuring that as they trudge from doctor to doctor – he will do so with one leg in a heavy cast. Another burden.
To minimize the stimuli which cause convulsions, she often has to wear soundproof headphones around the house and listen to music; Coldplay often does the trick. Understandably, she eschews techno or rap. Without headphones, multiple stimuli – say, a phone ringing combined with loud TV noises – will send her into a seizure.
She also finds solace in posting updates on Facebook, along with short videos of her condition – many of which are startling. This has attracted offers of expert help from neurologists willing to take on her case. This social media platform has been her one-stop shop for communications, information, and support – always a click away and 24/7. It’s also free – and paperless.
Offline, it’s anything but paperless. At Desiree’s feet is a black, plastic accordion folder already bursting with health care documents. Getting bigger by the day.
It’s understandable how Desiree now feels about the seasonal flu shot. She – and her doctors, she says - are convinced it is what’s caused her alarming, adverse reactions. “Don’t get the flu shot if you’re healthy” and not at risk, she implores. She claims doctors at Fairfax and Johns Hopkins hospitals agree.
Dr. David Goodfriend, the Director of the Loudoun Health Department, has a different take.
While he sympathizes greatly with Desiree’s case, “we know in Loudoun if no one got vaccinated more would get sick, and potentially more would die”.
“There are always rare side effects,” Goodfriend says. “But seasonal flu is a major killer of otherwise healthy people.” He strongly believes that any risks associated with a flu shot is “outweighed” by the benefits it provides.
And, he practices what he preaches: Goodfriend got the seasonal flu shot in late September, and the H1N1 vaccine last week.
Desiree and Brendan have always had a kind of Prohibition policy on crying. But not a day in the past thirty has been ‘dry’.
“You realize your life is never going to come back the way it was,” Desiree says, looking out her kitchen window onto a Brambleton street scene. “My goal in life was to one day be a CEO. Now, I don’t know if I can ever return back to work”.
With a new dose of tears welling up in her auburn-colored eyes, Desire looks down, and says “every day for me is a struggle to even want to live.”
But she goes on. Even knowing she is - possibly, sadly – on the wrong side of being ‘one in a million’…
Disclaimer: I should note that Desiree is a former colleague, and current friend, of mine from the days I worked at AOL, before I moved to Ask.com…
Postscript: Many have asked for ways they can help Desiree and learn about Dystonia. Desiree is on Facebook under “Desiree S. Jennings”, and at DesireeG00@aol.com. The best Dystonia information can be found on: Wikipedia.org, dystonia-foundation.org, mayoclinic.com, care4dystonia.org, or searching on Ask.com in the “Q&A” channel/tab, and typing in ‘What is Dystonia’.
The Dangers of Mercury in Vaccines:
A recent study by Toxicological and Environmental Chemistry published in June 2009 suggests that thimerosal causes mitochondrial dysfunction and damage to neuron cells when exposed to Thimerosal. The study also states, “Thimerosal is significantly more toxic than several other well-established neurodevelopment toxins.”
In 1999, the FDA proposed ban on thimerosal over the counter drugs went into effect. July 1999, public health officials announced that thimerosal would be phased out of vaccines. Jointly, the CDC, American Academy of Pediatrics and the FDA asked manufacturers to eliminate or reduce mercury in vaccines as quickly as possible. However, that seems to be a slow process and recently with the swine flu vaccine completely put off the back shelf and locked up in a safe where nobody knows the combination.
Studies show that fetus, being exposed to thimerosal run a risk of mitochondrial dysfunction, degeneration and death. (D.A. Geier, P.G. King and M.R. Geier, Toxicological & Environmental Chemistry, Vol. 91, No.4, June 2009, 732-749)
"Exposure to high levels of metallic, inorganic, or organic mercury can permanently damage the brain, kidneys, and developing fetus," (Agency for Toxic Substances & Disease Registry states, ToxFAQ for Mercury, April 1999).
FDA toxicologist, Dr. Mike Bolger, stated that "Methyl mercury easily crosses the placenta, and the mercury concentration rises to 30 percent higher in fetal red blood cells than in those of the mother. (FDA Consumer, September 1994). The adverse health effects of mercury on unborn children were observed in cases of accidental poisonings and in studies of individuals who ate large amounts of seafood, a common source of mercury.”
Another recent study published in NeuroToxicology shows significant harm from a single dose of mercury containing vaccine to newborns. A research team led by scientists from the University of Pittsburgh and Thoughtful House conducted a primate study which showed significant damage to newborns receiving at birth the hepatitis B vaccine that included an ethyl mercury preservative. It caused significant delays in the development of several survival reflexes in male rhesus macaque monkeys. (NeuroToxicology, 2 October 2009, Laura Hewitson, Lisa A. Houser, Carol Stott, Gene Sackett, Jaime L. Tomko, David Atwood, Lisa Blue, E. Railey White and Andrew J. Wakefield)
For example, if a 50 pound child who received two flu vaccines this season could be potentially receiving 20 times the EPA’s limit for ingested methyl-mercury if you are vaccinating with mercury containing vaccines.
Get all the facts and make an informed decision.
Posted by HMaurer
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What brand of vaccine did this woman receive? Did it contain mercury?
Posted by HMaurer
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I have to agree HMaurer, get all the facts. Check with the CDC or WHO for thimerosal, and you'll find that there is no evidence that it is harmful in the small amounts found in vaccines. Additionally, thimerosal doesn't contain any methyl mercury at all (it is metabolized into ethyl mercury, which is far less toxic,) so your final comment about a 50 pound child is specious at best.
More importantly, and actually pertinent to the story at hand, I feel for this young woman, but I can't see why the flu vaccine that she got 10 days before symptoms appeared is to blame. This is clearly a post hoc argument; she got a shot before she got sick, it must have been the shot that caused the sickness. We have no idea whether any other events occurred between 8/23 and 9/8 when she returned to work, nor do we know whether she had any preexisting condition that might have been the actual cause of the dystonia.
Creating fear around vaccination gets people killed, plain and simple, and wild speculation about the cause of an individual's disorder is unwarranted and unhelpful.
Posted by jasonpatterson
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