Woman Says Flu Shot Triggered Rare Disorder

[Bushknew]

Source: WUSA

Desiree Jennings is trapped in her body. Intellectually she's all there, but her muscles are fighting each other. She's been diagnosed with dystonia, an extremely rare and debilitating neurological disease.

She says after taking the seasonal flu shot she witnessed her body's rapid decline. She doesn't know what else it could be but she has serious questions about the seasonal flu shot. The Centers for Disease Control cannot comment on her case.

Desiree was a healthy 25-year-old up until two months ago, working at AOL and as a Redskins cheerleading ambassador.

But her world has now been turned upside down.

She says 10 days after getting a seasonal flu shot at a Reston grocery store in August, and on her second wedding anniversary, she got sick. First, she came down with flu like symptoms, then convulsions and blacking out.

She's seen more than 60 doctors. She says all of them were stumped until Johns Hopkins diagnosed her with dystonia. She believes her seasonal flu shot triggered it.

Desiree says, "Nothing else explains such a fast moving neurological damage. The medical hospitals ruled out everything, CAT scans normal, blood normal, MRI normal. The only thing that explains it is the shot caused the neurologic damage."

**********************Video of her on the right side MUST SEE***********************************
******************************************************************************************

Read more: http://www.wusa9.com/news/local/story.aspx?storyid=92345&catid=158

[crim son]

1. I saw this in the news recently.

Whatever triggered it, the woman is in bad shape and there is little hope for improvement. It breaks my heart, like so much of the news lately.

[xchrom]

2. woman says -- anecdotal evidence is not evidence. nt

[Orrex]

3. Interesting that the article cites the victim as the primary authority on the condition

A tragic story, but being a victim doesn't make one an expert. I'd like to hear from neurologists who can discuss her case with greater insight.

How did she arrive at her assessment that the "only thing that explains it is the shot caused the neurologic damage," I wonder?

Very sad in any case. And it's unfortunate that it will likely feed the already frenzied anti-vaccination propaganda.

[bear425]

4. This very same thing happened to my neighbor.

She partially lost her eyesight and the ability to walk properly. I believe she said it was a reaction to the preservatives in the flu shot that caused her neurological damage.

on edit: of course, my comment is merely anecdotal and not meant to feed into the anti-vaccination debate. It really did happen, though.

[Orrex]

7. That doesn't appear to be "the very same thing," though

Unless your neighbor was likewise diagnosed with dystonia, which would certainly be tragic.

What is your neighbor's condition now? Has it worsened? Improved?

[bear425]

19. Well since I don't have both cases to compare, I guess you're right.

Although the verbage I used is generally accepted commom language and not part of clinical discourse. In any event, my neighbor was diagnosed with Dystonia. When last I saw her, she was still making her way around the condo in her scooter, although her eyesight had improved - it took years. I moved away and haven't seen her since.

I have chosen to not get the vaccinations based on this neighbor's experience and other anecdotal evidence. Perhaps, some more time to prove the vaccine's efficacy is needed for me to feel comfortable with this protocol.

[Orrex]

21. Thank you for your answer

The diagnosis was what I was asking about, and you state that she was indeed diagnosed with dystonia.


My apologies--my post was in response to the (seemingly) incomplete claim that two different neurological complications amount to "the very same thing." Since you kindly followed up on your original post, then I withdraw that objection.

[The Straight Story]

5. Vaccines do affect different people differently (according to the cdc at any rate)

http://www.cdc.gov/vaccines/pubs/vis/default.htm

Just don't post anything though about negative affects (even if it has a basis in science and fact) because it just freaks out the fundies....

[Orrex]

9. I don't know if I've ever seen you post something that wasn't a straw man

That's almost an impressive feat of fallacious posting, when you get right down to it.

Bravo!

[The Straight Story]

11. Don't think I have ever see you do anything but avoid an argument you can't win

by diverting it in the way you just did.

Vaccines can and do harm some people and are not for everyone.

Agree or not?

[Orrex]

15. Certainly I agree with that part, because that wasn't the straw man

Here's the straw-man:

Just don't post anything though about negative affects (even if it has a basis in science and fact) because it just freaks out the fundies....

[The Straight Story]

18. That was a simple opinion based on personal observations here -

Say something negative about a vaccine, and vaccine fundies come out and tell you that you are against them all, spreading fear, etc and so on.

It happens, have seen it, and don't see how it is, as you call it, a 'straw man'.

Some folks cannot stand (hence, the term fundies) anything that does not fully support their views and will attack others when they say anything contrary to such views, call them names, question their motives, etc and so on.

[Orrex]

20. Then post a citation

I've been in the Health forum for years, and I've seldom if ever seen "fundies" reject science and evidence. Quite the contrary, in fact; anti-vaxers condemn these "fundies" for their support of science and evidence, which the anti-vaxers decry as "dogmatic." Additionally, anti-vaxers routinely accuse these "fundies" of being "shills for Big Pharma."

I look forward to your follow-up post in which you decry anti-vaxers, since you so proudly condemn fundamentalism. Send me a link when you post it, would you?



You're free to state your opinion, of course, but you wrote it in the manner of an assertion to be contested, which I did. Its structure was that of a straw man in that it portrayed opposition to anti-vax fearmongering as "fundamentalist" behavior.

[The Straight Story]

26. Follow up:

"I look forward to your follow-up post in which you decry anti-vaxers, since you so proudly condemn fundamentalism."

From what I have seen here on DU the 'anti-vaxers' are the folks who oppose mandatory vaccines for reasons you and I have already agreed on - ie, they can and are sometimes dangerous. Not usually, not always, not inherently.

My position has to do solely with what many here have claimed to support (though in some cases don't support) "Her body, her choice" or more broadly, Your Body - your choice. They have concerns based on either personal experience or the experience of others which gets shot down as them being anti-vaccine when in reality they are pro-choice.

'Fundies' as I refer to them are people who would ridicule them for their personal choice by telling them 'hey, vaccines are safe you are just being silly' and in MOST cases they are safe, but we are not a statistic and so applying a vaccine to a person is not a simple equation.

There are reasons to fear having one, not for most people - but when it is you or your kids you don't see them as most people, it becomes an individual thing. Like my first X who almost died when given one at a young age (which is why we did not give them to my kids early on - her sister died later, at 13, when they gave her a 'safe' aspirin when she had chicken pox, which led to rye syndrome ). Was pretty sure my kids did not inherit all her birth defects (she died later from complications of said defects) and that they were in the 98-99% range (I am guessing there) that have no major adverse affects to such things - but I as a parent was not willing to take that chance at that time.

Dr's and pharma companies don't know all, they can't - but even though they know that too they push the same fix for all people because statistically they are correct. If you or yours gets ill, or dies, such is life as most won't.

And in that sense I, and others, have seen 'fundies' here caring about the numbers and overall affect and not the personal one which most people are addressing.

Anti-vaxers are not usually telling people they should not be allowed to get such things, they are just wanting such things not to be mandatory and forced, nor do they wish to be ridiculed and called fear mongers because they tell the truth - some people can be harmed by them, so proceed with caution.

If I have failed to answer you in a way you desire will try to do so later (Have my daughter this weekend so on and off here tonight, apologize if I did not fully address your issues raised, will try again in a bit. Snack time!)

[Bushknew]

27. Well said nt

[Orrex]

28. Thank you for the thorough reply. Here's my take:

From what I have seen here on DU the 'anti-vaxers' are the folks who oppose mandatory vaccines for reasons you and I have already agreed on - ie, they can and are sometimes dangerous. Not usually, not always, not inherently.

I accept that this is your perception, but I don't share it. The "anti-vaxers" are the ones who post false, irrelevant, or wholly unsubstantiated information in support of their claims that vaccines are bad. Obviously I don't object to someone who chooses not to have herself vaccinated, but when that person argues that vaccines are unnecessary or dangerous (in a statistically insignificant sense), then I take issue with that person's claims. This has happened countless times in the Health forum.

Further, if someone argues that vaccines should be rejected because some company profits from them, that's just ad hominem fear-mongering. This is likewise very common in the Health forum.

Additionally, when someone decides not to vaccinate his child based on irrational fears, then I will take issue with that as well. Again, this happens frequently in the Health forum.

And in that sense I, and others, have seen 'fundies' here caring about the numbers and overall affect and not the personal one which most people are addressing.

Again, though, I think that's a misrepresentation. I've never seen a single post in all of DU that claims that someone's suffering is of lesser importance than the statistics. The statistical likelihood of complications is frequently cited, but these aren't intended to belittle the person's suffering; rather, they are intended to show that the incidence of adverse reaction is in line with the statistical expectation. It's a somewhat clinical assessment, yes, but it's not an effort to discredit the suffering.

Anti-vaxers are not usually telling people they should not be allowed to get such things, they are just wanting such things not to be mandatory and forced, nor do they wish to be ridiculed and called fear mongers because they tell the truth - some people can be harmed by them, so proceed with caution.

But anti-vaxers do routinely accuse their opponents of shilling for Big Pharma, or succumbing to dogma, or simply being science fundamentalists. They're never (in my experience) ridiculed for telling the truth; they're ridiculed for basing their arguments on a gross misunderstanding of science and epidemiology.

[Bonobo]

29. THAT was very, very well-stated. My feelings to a tee.

It is a matter of choice.

Choice. Reasons don't matter. Not anyone's business.

It is enough to say that in some cases, the risks are felt to outweigh the benefits.

From a national perspective, I can certainly see that the vaccine should be encouraged, but on an individual basis, that breaks down to free choice.

That's about it. I don't like the mocking, cajoling and bullying I see here on the subject (as Straight Story said).

[Bonobo]

12. Glad to see you're an equal opportunity yutz. nt

[Orrex]

13. So you need to masturbate in this thread, too?

By the way, thread-stalking is a violation of the TOS.

[Bonobo]

14. Mmmmmm baby baby baby oh baby. nt

[UpInArms]

22. TOS???

wow, who you servicing?

[truthisfreedom]

6. I've never had a flu shot.

I think I'm going to keep it that way.

[Orrex]

10. That's your right, but don't let irrational fear be your motivation

[truedelphi]

30. How about some facts then.

We have far too few investigations into conditions at the vaccine producing labs. When the investigaters do arrive, they discover filthy equipment, they discover bacteria inside the vaccine material, viral material unrelated to the disease that the vaccine requires, and heavy metals.

Then there is the fact that the flu shot only offers 70% chance of preventing the flu.

[stray cat]

8. Seasonal flu shot - one always has to weigh vaccines or treatment

against doing nothing. Since 35000 in America alone die from the flu - the odds are better for the vaccine

[stray cat]

16. The evidence for the cause seems pretty sketchy - its quoted from Fox and twitter

that they found a couple of doctors that think she is right. I'll wait and see if any credible consensus from medical personnel develops.

[Bushknew]

17. Video of her on the right side of the link ***** MUST SEE******

[Fire_Medic_Dave]

23. 10 days. That sure is fast moving.

[Warpy]

25. The only time I can remember it progressing that quickly

was in an alcoholic patient who had been drinking methanol.

The CDC isn't commenting because the only link with the flu vaccine is anecdotal and coincidental. No one else has ever had this problem.

Apparently this gal just KNOWS the flu vaccine did it just the way parents of autistic kids just KNOW the MMR vaccine did it. In the latter case, we know that isn't true at all, no link has ever been found. In her case, more study is certainly needed along with the treatment that is available, or will be if we get the health insurance mess sorted out.

[cannondale]

24. Innumeracy

"As many as 250,000 people in the United States have dystonia..." http://www.neurosurgerytoday.org/what/patient_e/dystonia.asp

I'm guessing that thousands of those 250,000 have had a flu shot, and many of them had a flu shot shortly before symptoms. I'd further bet that most had at least one glass of milk just weeks prior to symptoms as well, but you're going to remember the flu shot and possible flu-like symptoms prior to your new symptoms.

[hedgehog]

31. "Recently there has been coverage in the news media about a woman developing dystonia

after receiving a seasonal flu vaccine. The DMRF is not aware of any information or research showing that the seasonal flu vaccine causes dystonia. As with any medical procedure or treatment option, the DMRF encRecently there has been coverage in the news media about a woman developing dystonia ourages you to discuss the risks and benefits of the getting the seasonal flu vaccine with your doctor.

....

Most primary forms of dystonia, including those for which no genes have yet been discovered, are believed to be caused by a combination of genes and other unknown factors. Those genes and factors have simply not been identified at this time.

It’s possible that breakthroughs in genetics may soon allow the diagnosis of hereditary dystonia even in families without a clear family history.

......

On the other hand, we do know that dystonia can occur as a result of trauma, certain medications, and mutated genes. So, we may say that the mutated DYT1 gene or physical trauma cause dystonia, but these explanations do not address the true origin of the dystonia and what happens inside the body to produce the symptoms.
.....
Drugs belonging to this class of neuroleptics include (trade name listed in parenthesis): Acetohenazine (Tindal®), amoxapine (Asendin®), chlorpromazine (Thorazine®), fluphenazine (Permitil®, Prolixin®), haloperidol (Haldol®), loxapine (Loxitane®, Daxolin®), mesoridazine (Serentil®), metaclopramide (Reglan®), molinndone (Lindone®, Moban®), perphanzine (Trilafrom®, Triavil®), piperacetazine (Quide®), prochlorperzine (Compazine®, Combid®), promazine (Sparine®), promethazine (Phenagran®), thiethylperazine (Torecan®), thioridazine (Mellaril®), thiothixene (Navane®), trifluoperazine (Stelazine®), triflupromazine (Vesprin®), and trimeprazine (Temaril®)."


Dystonia Medical Research Foundation

http://www.dystonia-foundation.org/pages/cause/31.php

[trotsky]

32. Oh pshaw.

What could the Dystonia Foundation possibly know about the causes of dystonia? :sarcasm:

[xchrom]

33. +1

'The DMRF is not aware of any information or research showing that the seasonal flu vaccine causes dystonia.'

[Bushknew]

34. & now they will be? It couldn't have been the flu shot.

[Bearware]

35. A missing variable in the Pro/Anti vaccine debates

The person affected could have had an autoimmune response triggered by the vaccine. The same thing might have been triggered by a virus infection. The missing variable may well be severe vitamin D deficiency. There may be as much as 80% of the population with vitamin D deficiency in the U.S. Being low on vitamin D makes you much more susceptible to developing an autoimmune disease and if it continues developing more of them.

We do not have all the information but if she was actually diagnosed with Dystonia it is only a partial diagnosis because it does not specify the original cause of the Dystonia from a huge range of candidates. One of those candidates is an autoimmune disease. From the number of doctors she has seen, they almost certainly eliminated a family history of Dystonia and many diseases where dystonia is one symptom. They may have even pinned the present cause to damage in the cerebellum. This seems to be pretty common in rare autoimmune neurological diseases. I have direct personal experience and have corresponded with many people in a similar situation. Immunology is not quite there yet, doctors practice primarily what they learned in medical school and many doctors only see a few cases like this in an entire career. Further, autoimmune diseases are time consuming, confusing and very difficult to cure.

Frequently doctors will take the intellectually lazy approach and make a private diagnosis of "the patient is crazy" which appears to be happening in public in this case. From Wikipedia on this incident:

"One case reported<2> involves a woman who developed dystonia 10 days after a regular flu shot. However, Dr. Leigh Vinocur from the University of Maryland Medical System stated on the October 16, 2009, airing of "The O'Reilly Factor" on Fox News that this case was psychogenic and neurologists were using it as an example of psychogenic dystonia.<3>"

Sorry, I could not force myself to actually bother to check if that actually happened on Faux so I just took it on faith. :crazy:

I really wonder whether they even knew to check her vitamin D blood levels or bothered to look closely for autoimmune reactions with specific blood tests. One would hope they at least asked her if she or close family members had any autoimmune diseases.

For those interested in vitamin D, here are some useful sites:
http://www.vitamindcouncil.org/
http://www.grassrootshealth.net/ Great videos

For those interested in vitamin D and the flu:
http://www.vitamindcouncil.org/newsletter/h1n1-flu-and-vitamin-d.shtml

[uppityperson]

36. Thank you but we already have Big-Vit D person here.

[uppityperson]

37. Updated video and story, Neurologists believe psychogenic.

http://www.youtube.com/watch?v=jP0QYLMUZb4&feature=youtube_gdata

http://www.examiner.com/x-13791-Baltimore-Disease-Prevention-Examiner~y2009m10d16-Woman-claiming-she-acquired-dystonia-from-a-flu-shot-may-have-it-all-in-her-head

Video of a former NFL cheerleader who allegedly acquired dystonia from a flu vaccine has been making the rounds lately all over the media and online. The woman, Desiree Jennings, states in her interviews that she acquired the flu from a flu vaccine she received ten days earlier and then the symptoms of dystonia began showing.

On the October 16, 2009, Fox News show, "The O'Reilly Factor", Dr. Leigh Vinocur from the University of Maryland Medical System offered an alternative cause to Ms. Jennings' syndrome. Dr. Vinocur stated that there have been no cases of dystonia associated with the flu vaccine and that neurology experts at the University of Maryland were using Ms. Jennings' case to teach neurology residents about psychogenic dystonia.

Dystonia is a neurological disorder where twitches and other repetitive, involuntary reactions occur. Normally, these repetitive actions do not let up. In the interview videos, Ms. Jennings' symptoms subside at times. According to Dr. Vinocur, neurologists saw the video and were convinced it was psychogenic.

Psychogenic disorders do not mean that a person is faking their symptoms. Rather, it means that the person truly believes that the symptoms are real. However, there is no physiological reason for the symptoms. It truly is all in their head. Examples include phantom limb syndrome, where a hand that has been amputated along with a limb is felt by the person as being clinched or still being there. Psychotherapy or some medications to treat the mental issues can help deal with psychogenic disorders.

Another important detail in Ms. Jennings' story is that she acquired flu from the flu vaccine. This is a scientific impossiblity. The flu virus in the injected vaccine is dead, inactive. In the solution being injected, the virus has no cells in which to live and reproduce. Viruses are, by definition, obligate intracellular parasites. They need cells to live, grow, and reproduce. There has been no recorded case of acquired flu from the flu shot vaccine. Likewise, if true, Ms. Jennings would be the first case of dystonia as a result of the flu vaccine. Furthermore, the Food and Drug Administration did not find anything wrong or different about the lot of vaccine used.

[Bearware]

38. Questions for neurologists

It was reported that Ms Jennings was also having convulsions. There should have been at least one EEG taken. With the number of doctors that she has seen one might expect her to have spent enough time for some independent recording of information that is extremely difficult to fake. Unless psychogenic illness is known to cause abnormal brain electrical discharges.

I am not a movement specialist. However, is the Dystonia she exhibits typical for people with Dystonia and is it very difficult for people without abnormal motor control at the neurological level to reproduce? Perhaps there are electrical or physical studies that can differentiate where muscle control is going wrong that are not susceptible to psychogenic manipulation.

I am not persuaded by statements about no known cases of Dystonia associated with the flu vaccine. With the number of people getting
flu vaccines over the years there have to be many cases of people getting Dystonia after a flu shot simply by coincidence that do not get into the literature.

I just wonder whether the "neurology experts at the University of Maryland were using Ms. Jennings' case to teach neurology residents about psychogenic dystonia" are ignoring inconvenient evidence.

[laughingliberal]

39. I find all too often medical science ignores inconvenient facts for which they have no explanations

Just something in the nature of some physicians will not allow the words, "I don't know," out of their mouths. Therefore, if you have a condition which does not fit known science, you must be crazy. How many years was this the case for many Lupus patients? Now, they may have found the causation factor for CFS/fibromyalgia patients conditions. How many doctors through the years believed we were all just lazy and crazy. How many jokes about 'yuppie flu?' I don't know what caused this woman's dystonia but I will say the fact that medical science hasn't proven something yet is not proof that it is psychogenic. I have worked in health care long enough to see more than one sacred cow of medical dogma turned on its head. A doctor without the answer is just a fallible human without the answer who needs to admit we don't know everything yet.

[Orrex]

43. Hmm...

In light of recent events, this condemnation of medical science seems somehow less convincing.

[Orrex]

40. UPDATE!

http://www.democraticunderground.com/discuss/duboard.php?az=show_mesg&forum=385&topic_id=439817&mesg_id=439817

I am very tempted to call her a word that would put me in violation of DU's TOS, so I'll simply call her an asshole.

[SidDithers]

41. I love the fact that an alt-med practioner...

administered a fake cure to cure a fake illness. :rofl:

That's sheer poetry :)

Sid

[SemiCharmedQuark]

42. Like all things, this situation is perfectly described in a Simpsons Clip:

http://www.youtube.com/watch?v=aqImkDgDwHU