Nov 06 2009

Well That Didn’t Take Long – Another Dystonia Case Follow Up

I have been blogging this week about the Desiree Jennings case – the 25 year old woman who is telling the media that she developed a neurological disorder known as dystonia two weeks following a seasonal flu vaccine. However, the video of her movement disorder that was made public was not, in fact, consistent with the diagnosis of dystonia or any organic movement disorder, and therefore it is highly unlikely that her symptoms were a vaccine reaction. Every movement disorder specialist or neurologist who viewed the videos and voiced their opinion agreed that the signs she was displaying on the public video were most consistent with a psychogenic movement disorder.

We were also careful to point out that this does not mean she is “faking”, that her symptoms are not real, and that she is not suffering from a genuine and debilitating disorder. Simply that the nature of the disorder is likely psychogenic and not due to any specific brain pathology, caused by a vaccine or anything else.

Jennings claimed, however, that her doctors at Johns Hopkins diagnosed her with dystonia and concluded it was from the vaccine. We have only her word to take for this as her doctors, understandably (given the rules of confidentiality) have not made any public statements. Jennings could give them leave to do so, but apparently hasn’t.

Then it came to light the vaccine adverse event reporting systems (VAERS) report that is likely the one Jennings made indicates from the hospital records that:

The admitting neurologist felt that there was a strong psychogenic component to the symptomology, and made a final diagnosis of weakness.

If this is indeed her report (which is very likely, and would be an astounding coincidence if it weren’t) this is a far cry from the second hand reports we were given about her doctor’s impressions.

Despicably, Generation Rescue (GR) and the anti-vaccine movement were quick to jump on this case and exploit it for their own propaganda. They immediately portrayed themselves as “experts” – apparently able to make and treat such neurological diagnoses. However, after push back from the dystonia community, GR took down their web page they had put up to support Jennings. But then after a few days they had apparently made the calculation that, despite the fact that this was likely not a case of genuine dystonia or vaccine injury, the propaganda value was too treat to ignore, and they could just attack the physicians who felt obliged to properly analyze this case.

The attacks were two-fold: First, they attacked the notion of psychogenic illness, completely misrepresenting it as equivalent to “faking” or as a knee-jerk dismissal of vaccine injury. In doing so they are denying the very legitimate and debilitating nature of psychological illness – that it is very real and deserving of compassion and treatment. It is just another kind of “brain” disorder – just a functional one.

Second – they attacked physicians (like me) who commented on the case in public as being unprofessional. They apparently feel that only they and their doctors (or people who agree with them) are able to publicly comment on Jennings’ case. When Jennings placed her story in the public domain, specifically to “warn” against the dangers of vaccine, her case became fair game. In fact, it became the responsibility of the medical community to set the record straight.

We also made it abundantly clear that we were basing our opinions solely on the videos and reports that are in the public domain. If Jennings and GR want to continue to present their interpretation of the case, they should not whine about other opinions, but make her medical record public. Let’s see what her doctors really believed about her case. It is disingenuous in the extreme to present a case essentially as hearsay but offer it as evidence in a very serious public debate, and cry foul when others comment on that public information, but refuse to make the evidence truly transparent.

It is, in my opinion, malfeasance to continue to promote this as a case of vaccine injury, in light of the controversy, without making all the records public.

Now the plot thickens.

Last Friday I predicted:

Further, Jennings is now in the hands of the Generation Rescue anti-vaccine quacks. I predict that they will be able to “cure” her, because psychogenic disorders can and do spontaneously resolve. They will then claim victory for their quackery in curing a (non-existent) vaccine injury.

This is now exactly what has happened. GR sent Jennings to Dr. Rashid Buttar. Dr. Buttar has been charged with unprofessional conduct and is a notorious anti-vaccinationist who uses dubious medical treatments for what he considers to be vaccine injury. Among these are chelation therapy for non-existent mercury toxicity. Dr. Buttar tells his story on the Robert Scott Bell Show. If you are not familiar with this show, it is a mixture of the worst of right-wing shock jocks with alternative medicine woo wrapped up in conspiracy theories.

You have to listen to the show to fully appreciate the astounding level of nonsense they are pushing. First, they make a point to emphasize how sick Jennings was. They say they have video, which I cannot find posted anywhere. Let’s see it. I will happily revise my opinions if the video warrants. But there is nothing in the description of her symptoms (despite Dr. Buttar’s naive and self-serving insistence) that is incompatible with a psychogenic diagnosis. Buttar continues, in fact, to characterize her episodes as “seizures” when they sound nothing like seizures, and almost certainly what she was displaying on the videos that are public were not seizures. According to Buttar she was at death’s door – if GR had not gotten her to his clinic when they did, she would have deteriorated and died.

Dr. Buttar somehow knew that this was mercury toxicity, and prescribed his standard treatment – chelation therapy to remove the mercury. I have not seen confirmation that Jennings received the type of flu vaccine that contains thimerosal. The single dose vials do not, except for insignificant trace amounts. But let’s assume that she did – this means as an adult she received a one-time dose of either 12.5 or 25 micrograms of thimerosal. This is a tiny dose, well below safety limits, and far lower than the doses that have been shown to be safe by a large amount of evidence. This means that Dr. Buttar is now claiming that immediate and devastating neurological injury can occur to an adult after a single small dose of thimerosal. That is a rather extraordinary claim, to say the least.

But, unknowingly, Dr. Buttar was about to administer what can be considered a significant test of the hypothesis that Jennings’ symptoms are psychogenic. One test we can use to help confirm this diagnosis is to see if the patient’s symptoms can respond to psychological treatments or to medical treatments that should not otherwise be capable of reversing the symptoms. A response that is too quick to be plausible, for example, is one type of response that supports a psychogenic diagnosis. One dramatic example from my own experience was a patient with apparently psychogenic symptoms who believed that he needed a specific IV medication as a treatment. After extensive negative workup, we agreed to give him the treatment, and his symptoms completely resolved even before the medicine had a chance to work its way through the IV tubing and into his arm.

If Jennings really had dystonia or any biological brain injury from toxicity, removing the toxin might prevent further progression and allow the slow process of recovery to begin. But brain damage does not immediately reverse itself once the cause is removed. It is possible for dystonia to be a side effect of certain medications, and it can immediately resolve once that medication is stopped or reversed. But in that situation we are dealing with an effect of an active blood level of a pharmaceutical agent – something which is inherently reversible. We are not dealing with damage or injury.

Further, it is highly implausible that Jennings (even if she received the highest dose of thimerosal from the flu vaccine – 25 micrograms) had any mercury left in her system from the vaccine she received in August. Mercury from vaccines is removed naturally within days, and would not be hanging around in significant amounts two months later.

However, now Jennings herself, and Dr. Buttar, report that Jennings began to improve while still sitting in the chair and receiving her chelation therapy, and within 36 hours her symptoms were completely gone. First, let me say that I am very happy Ms. Jennings’ symptoms have resolved. Hopefully now she can just go on with her life. But to me, this impossibly rapid recovery is a dramatic confirmation that her symptoms were psychogenic to begin with. It is simply implausible that brain injury from mercury toxicity could be reversed so quickly – especially when you consider that Dr. Buttar had Jennings at death’s door.

The whole affair has now come full circle. To scientists and skeptics, this is an unfortunate story of a young woman with a psychogenic illness who unfortunately was exploited by some headline grabbing media and the anti-vaccine movement. To the anti-vaccinationists and the right-wing conspiracy health-freedom nuts, this is yet another story of an injury at the hands of evil vaccines, and all attempts to figure out what was really happening here are just lame attempts by the medical establishment to cover their behinds.

Read the comments over at Age of Autism and you will see what I mean. The conspiracy mindset is immune to evidence and reason. Already I am being dismissed over there as a shill (I am still trying to figure out what my motivation is).

Seriously, my only concern in this and related cases is to discern the truth as best as possible. If it is possible for systemic dystonia to be triggered by a flu vaccine, I want to know about it as a practicing neurologist. And the public should be informed about all the known risks (and benefits) of vaccines. If this is a genuine case, then add it to the list of possible adverse events. Despite the propaganda from AoA and other anti-vaccine sites, no one is seriously denying that vaccines occasionally cause adverse reactions. If this is a case of dystonia from vaccines, it is an exceeding rare reaction.

However, the evidence that is currently in the public domain simply does not support that conclusion. It overwhelmingly supports a different diagnosis – a psychogenic reaction not caused by vaccine injury. If the anti-vaccine crowd wish to support a different conclusion, they should put forward a cogent scientific argument – not just attack their opponents and whine that they have the audacity to express an opinion they don’t like. And if Jennings wishes to promote her case as an example of vaccine injury, she should do the right thing and put her medical records in the public domain so that we can see all the evidence and come to the best conclusion possible. But she cannot have it both ways – make her case public, but only the parts that she wants.

This is likely to go down as one of those cases that will forever divide the scientific community from the anti-vaccine community. They have clearly made up their minds, and their hostility and conspiracy-mongering toward other opinions is evident. While I just want to know the truth – let’s see all the evidence and let the chips fall where they may. Meanwhile, the information that we do have is pretty clear – this is not a case of vaccine injury, nor is it a case of an astounding cure by chelation therapy.

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Note: Orac has also given an update here: http://scienceblogs.com/insolence/2009/11/desiree_jennings_cured.php

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