The price of anti-vaccine fanaticism, part 2

I have a bit of a love-hate relationship with the antivaccine propaganda blog Age of Autism.

The reason for the hate part should be obvious. AoA is, without a doubt, a cesspool of pseudoscience and anti-vaccine propaganda. All while oh-so-self-righteously denying that its agenda is “anti-vaccine,” AoA on a daily basis lays down articles blaming vaccines for autism, while setting up websites attacking vaccine science, taking out full page ads attacking vaccines as causing autism, gloating when learning of declining vaccination rates in the Ukraine, and high-fiving (blogospherically speaking) recently Kim Stagliano learned that Captain Kirk suffered a reaction to a vaccine in the new Star Trek movie. Never mind that it was intentional in order to smuggle Kirk back on the Enterprise after he had been put on academic probation. (Don’t worry, I won’t give away any more of the movie.) Meanwhile, Generation Rescue’s founder and AoA blogger J.B. Handley shows up on other blogs bragging about how antivaccinationists tend to be affluent, well-educated people, and Dan “Sgt. Schultz” Olmsted attacks Bill Gates because his foundation promotes vaccination. With the addition of their useful celebrity idiot Jenny McCarthy, AoA has become a major force in discouraging vaccination and promoting disease.

On the other hand, I like AoA. No, I don’t like what it does or what it writes, and I certainly don’t like its pseudoscience. What I like about it is how, every so often, AoA posts something so unbelievably crazy, disturbing, and horrifying that it lays bare for all to see the utter pseudoscience and cultish beliefs that are at the heart of the antivaccine movement. Most often, it’s Kent Heckenlively who does this to the most hilarious effect. Well, it would be hilarious if it weren’t always in the back of my mind that he is subjecting his autistic daughter to some pretty extreme quackery, as I pointed out when he wrote a post about how he took his daughter to Costa Rica (and even hitting up his daughter’s grandfather for $15,000 to do so) for stem cell quackery. But it was worse than that. This quack injected alleged “stem cells” directly into Heckenlively’s daughter’s cerebrospinal fluid by lumbar puncture. What these posts demonstrate, more than anything to me, is the price of antivaccine fanatacism: parents subjecting their autistic children to all manner of quackery, be it the dietary woo that Jenny McCarthy subjectes her son Evan to or the more extreme case of stem cell quackery. I only wish Oprah had bothered to see some of these posts before signing Jenny McCarthy up for a deal to produce a daytime talk show.

This time around, Kent Heckenlively is at it again, and what he says is so amazingly wrong that it is, as they say, not even wrong. I would laugh at it if it weren’t for the fact that he’s subjecting his autistic daughter to quackery based on his mistaken beliefs. In this post, he’s wondering why, after all the rounds of chelation therapy he’s subjected his daughter to, she still keeps testing high for excreted “toxic” metals. First, he sets the stage:

It’s been said that a parent is only as happy as their least happy child.   That saying should probably be reworked for autism parents.  We will be obsessed to the degree of impairment of our least recovered child.

I’m fortunate that my son Ben had a complete recovery with the quick implementation of the gluten/casein free diet after his 18 month vaccination, but after seven years of bio-medical treatments my daughter Jacqueline is still severely affected with autism and seizures.

Note how it never enters into Mr. Heckenlively’s head that perhaps the reason Jacqueline is still autistic is because the biomedical treatments don’t work. No, he is utterly convinced that they must work, even to the point where he’s willing to keep forking out big bucks to various “biomedical” practitioners over the course of seven years and even go to Costa Rica for stem cell quackery, even as he wonders:

About four years ago I started tracking my daughter’s toxic metal excretions using the Doctor’s Data lab…I’ve got close to 50 of these tests on her and thanks to Jacqueline’s doctor they’ve been charted on graphs.

From the beginning aluminum showed itself to be a problem.  Her excretions have ranged from 8-13 times normal.  In August of 2006 when we were going after strep her aluminum excretion hit a high of 80 times normal.  Her aluminum excretion has ebbed and flowed since that time, but it’s still usually somewhere between 5-10 times normal.  The other metals have also ebbed and flowed, but aluminum has been the most dramatic.

If there’s one thing you should know about Doctor’s Data, it’s that it’s a lab favored by the mercury militia. What it uses are called “provoked” or “stimulated” urine tests, in which an oral chelation drug is administered before urine collection. Not surprisingly, such results always produce high levels of “toxic metals” in the urine, which are normally pretty low. Indeed, labs like DD are integral to the antivaccine autism “biomed” industry. They produce highly unreliable values that have no clinical meaning because they are not baseline values and have been provoked by chelation. The standard manner to measure urine mercury is to collected a non-provoked urine sample over a 24-hour period. Moreover, because most of the extra excretion takes place within a few hours after the chelating agent is administered, using a shorter collection period yields a higher concentration in “provoked” testing. Moroever, DD uses standard values for non-provoked testing as the reference values for provoked testing, which is ridiculous. Provoking with a chelating agent will raise the concentration of metal ions in urine well above these normal reference ranges. Also, DD has been questioned about this. Arthur Allen tried to interview an official at the company, but failed. However, he did manage to talk to one person there and asked him about the reference value problem. The response:

An individual close to the company said there was no way to establish a base line for post-chelation samples, which might have been provoked by any number of different chelating agents, at varying doses. “The tests are ordered by physicians, so they can interpret the results,” this person said. “They do what they want with this information.” But copies of the reports, which chart the child’s mercury levels into deceptively shaded “elevated” and “very elevated” areas, are typically provided to both physicians and patients.

Indeed, Dr. Jim Laidler once tested Doctor’s Data, as described here:

Doctors Data was tested by Dr. Laidler in a way that any parent could do, almost. Dr. Laidler made up a false urine sample using known mercury free ingredients at a university lab, he divided the false urine (distilled water and creatinine) and sent it off in 2 urine specimen containers provided by Doctors Data.

He sent it to DD and got back 2 different results and both high in mercury.

So, basically, in Mr. Heckenlively’s case, there’s a dubious “provoked” test for metal, whose results have never been shown as far as I can tell to correlate with any disease, condition, or “toxic metal” load, combined with an equally dubious laboratory test. And, as Mr. Heckenlively put it, he is obsessed with these results. After all, he’s done over 50 of them and keeps meticulous graphs, as he tires to correlate anything he can think of with the vagaries of how these levels rise and fall over time. Meanwhile, the autism biomedical industry discourages questioning. When even the ever-gullible Mr. Heckenlively starts wondering why on earth nothing ever seems to change with his daughter’s urine tests if chelation is supposed to be ridding her of all these “toxic” metals that to him are causing her autism:

When I’ve asked her various autism doctors the reason for this continued high toxic metal excretion they tell me to think of my daughter as having a vast, toxic pool inside her which needs to be drained.  Metals sequestered deep in her tissues are now able to be released.  I understand that this explanation may be exactly right.

But something about the explanation seems wrong to me.  Regardless of the amount of metals which she’s retained it seems we should have gotten it out by now.  In addition, for all of the metals she’s excreted over the past years I haven’t seen a corresponding increase in cognitive function.  At the age of eleven she’s still in diapers, her speech is very apraxic, and she still has seizures.

I understand that many DAN doctors claim it’s only when they get near the end of chelation that they see dramatic changes in the kids, but that also raises some additional questions I’ll get to later.

Mr. Heckenlively doesn’t seem to realize that, even if there were a “vast, toxic pool” of metals inside of his daughter that needs to be drained, seven years of more or less continuous chelation therapy should have been more than adequate to drain that pool. It wasn’t because there is no such pool, and Mr. Heckenlively’s data from his own daughter does not support his claim that she is mercury toxic. But poor Mr. Heckenlively so, so, so wants to believe that he’s willing to look for any explanation and swallow anything, no matter how ridiculous. Towards the end of his post, he describes the ideas of one Mark Squibb, whom he describes as “a former engineer who now has a web-site which seeks to promote the latest products and ideas in alternative medicine.” That’s an understatement. Squibb’s website offers woo such as “lipophilic detoxiication,” a “vaccine buffer system,” and “stress detoxification systems,” among other things.

But the woo-iest of his woo-ey ideas is one that Kent Heckenlively likes the best. I have to admit, my jaw really did drop when I read this:

Mark’s theory was fairly easy to grasp, even if it went far beyond what’s currently accepted in scientific thinking.  It was his claim that the metals suppressed the immune system, let various pathogens use them, and then the pathogens themselves were proceeding to make their own supply of toxic metals, leading to oxygen deprivation. 

The bugs are making metals! 

That’s why kids like Jacqueline were having such long periods of chelation and little recovery.  We were taking metals out, but the bugs (viruses, bacteria, fungi, and molds) were making them faster than we were removing them!  We needed to reach a tipping point where we were getting the metals out faster than the bugs were making them.

I didn’t realize that bacteria were alchemists, did you?

I mean, really. This is utter and complete nonsense from a scientific standpoint. Bacteria can’t “make” metals. They can only consume and excrete them, unchanged. For bacteria to “make” metals, they would somehow have to be able to transmute other elements into mercury, lead, or the other metals in DD’s panel. The ignorance of this basic fact is so astounding that it’s frightening to think that Mr. Heckenlively is a science teacher.

But it’s worse than even that:

Mark also claimed the bugs were using the metals, specifically aluminum, to do something which was essential to their survival.  It let them hunt.  Aluminum is used in treating waste water in order to make particles clump together in a process called flocculation.  (Yes, I did ask, what the flock is that?)  By causing the particles to clump together, it’s easier for the bugs to get their food.

This “clumping” would have system-wide effects which could be measured if you knew where to look.  One of the first places to look was blood-pressure.  These kids would tend to have low blood-pressure, even though their pulse rate would be quite high.

A child with a lot of bacteria growing with a high pulse and low blood pressure would have a condition for which there is a name: Sepsis. That would be really, really bad, and it’s unlikely that a child could remain chronically septic for long untreated with antibiotics before becoming floridly septic.

But that’s still not the worst. This is:

Mark went on to say that this clumping would’ve led to what’s known as “micro-strokes” in the small vessels of Jacqueline’s brain and other parts of her body, a theory pioneered by Dr. Andrew Moulden.  In preparing this article I watched Dr. Moulden’s six-hour DVD “Tolerance Lost” about the issue of micro-strokes throughout the body.  The DVD was enlightening and thought-provoking.

I’ve discussed Andrew Moulden before. Suffice it to say that his particular brand of woo is, in my humble opinion, as quacky as a quack’s woo can be. Just because aluminum ions can be used to flocculate particles in industrial settings that the same thing must be happening in the body and causing disease. Truly, a little knowledge is indeed a dangerous thing.

But that’s not all the woo that Squibb has sucked Mr. Heckenlively and, by extension, his daughter into. Heckenlively describes results of live blood cell analysis, which is utter and complete quackery. This result claimed that Jacqueline’s red blood cells were “collapsed” and thus unable to carry oxygen. He’s also into pH woo, as well as measuring the surface tension of Jacqueline’s urine. Why? I have no idea, but Squibb used it to tell Mr. Heckenlively what he wanted someone to acknowledge: That his little girl was sick. Squibb’s woo also provided Mr. Heckenlively with exactly what he wanted to hear: Validation of what he thought about all the quackery to which he’s been subjecting his daughter:

From my own standpoint it’s a plausible explanation for why Jacqueline’s biggest metal pulls have been when we’ve been going after bacteria, fungi, and viruses, as well as why despite getting out lots of toxic metals it still seems like there’s so much more inside her.  I swear, we’re not feeding her aluminum!

Actually, Mr. Heckenlively is. Aluminum is ubiquitous in the environment. Indeed, virtually all food contains some aluminum, and the average adult consumes approximately 7-9 mg per day of aluminum in his diet. Mr. Heckenlively probably consumes 7-9 mg per day of aluminum in his diet. Perhaps he should start chelating himself. Instead, he’s busily purchasing the woo that Squibb’s selling, such as an infrared heating mat called the Bio-Mat (what a bargain at only $500), and continuing to pay DD for lots more tests, one of which found elevated uranium (!) levels in his daughter. Meanwhile, Mr. Heckenlively soldiers on, moving on to intravenous chelation therapy:

I’ll continue to do the EDTA and glutathione pushes and monitor.  Hopefully, this will make the chelation period much shorter.  If the next couple tests come up with low excretions I’ll be considering that Mark was right and the metal-making bugs have been defeated.  Maybe it will finally be time to consider HBOT, especially if her red blood cells show an increased ability to carry oxygen.

Note that an EDTA push is exactly what killed 5 year old Tariq Abubakar Nadama in 2005.

I found it very painful to read Mr. Heckenlively’s account, as I do try to empathize with him. He has an autistic daughter, and raising such a child is a huge challenge. I don’t know if I could handle such a challenge myself. I also have no doubt that he really and truly wants to help his daughter. Unfortunately, he has no real understanding of science or medicine and that leaves him susceptible to the attraction of the quackery du jour. All I can think of is his poor daughter, who is being subjected to everything from repeated urine tests (which can’t be easy to collect; I wonder if he has to catheterize her to get them) to multiple blood draws and IVs, to lumbar punctures used to inject stem cells directly into her central nervous system via the cerebrospinal fluid. On the other hand, in a way I’m glad he’s so tone deaf and keeps writing these accounts. They are so full of credulity towards outright quackery and so full of pseudoscience that they provide excellent teaching fodder to use to try to show parents who may be contemplating going down the road that Mr. Heckenlively has gone so far down that I fear he can never come back.

Fortunately for us, although not for his daughter, Mr. Heckenlively’s descent into pseudoscience can be used as a perfect example of the mindset that drives not only faith in quackery but the antivaccine movement. His AoA posts are, as they say, “teachable moments.” Just as Mr. Heckenlively is utterly convinced that “toxic metals” and various microbes are somehow responsible for his daughter’s unfortunate condition and will grasp at any straw, no matter how tenuous and no matter how much he has to cherry pick studies and twist science, logic, reason, and even his perception of reality itself to turn scientific evidence against his beliefs into hopeful evidence for them, so, too, the antivaccine movement is so utterly convinced that it absolutely positively has to be The Evil Vaccines that cause autism that it does exactly the same thing. The price of this denial of science is steep indeed, both financially and emotionally. But the ones who truly pay the price of the sort of antiscientific, cultish belief system promoted by AoA, other antivaccine groups, and the “biomedical” movement are the autistic children, who are labeled as “toxic” and needing “detoxification” (i.e., purification) and who are thus subjected to all manner of dubious therapies and outright quackery in a futile attempt to make them “normal” again.