Last night Nightline did a piece on the Geiers and Lisa Sykes, and interviewed Dr. Laidler, a doctor and autism parent who disparages biomedical treatment for autism.
Two years ago I wrote a critique of an article written by Dr. Laider that was critical of chelation. I submitted it to him and asked for him to comment on it, but I did not hear from him again.
The obnoxiously redundant point of my critique is that there are lots of questions about autism and chelation that the CDC should really look into. This was two years ago and still no studies from the CDC, despite the fact that children are recovering through chelation. However some how Julie Gerberding still believes that she is credible and convincing when she says that "CDC recognizes that parents want answers," adding, "We share their frustration at not having more answers about the causes and possible cure."
Because I had not heard of Dr. Laidler's involvement in the autism debate any more I had not tried to get a response from him, but since he is appearing on Nightline, I am assuming that he is available to comment. If he would like to respond to my critique I would still welcome the discussion.
Reposted from 2005, File under: Things That Call For A CDC Study:
Chelation & Autism
One of the problems that complicates the search for the causes and cures of autism is the assumption that it is a single disorder and that all cases are caused by the same thing. This is in contrast to a disease like AIDS in which all cases are brought on by the HIV virus.
What is diagnosed as ‘Autism’ is actually likely to be more than one physical syndrome. Because Autism is a DSM diagnosis and based solely on behavioral criteria, the diagnosis does not address the different sets of physical anomaly clusters that researchers are finding when they look at the biology of ‘autistic’ patients.
One research group has recently made a distinction between two types of autistic profiles. One, labeled complex autism and occurring in about 30% of autism cases, presents with smaller head size, greater chance of low IQ, lower rate of siblings with the disorder and seems to have close to a 1:1 ratio of occurrence between boys and girls.
The other, essential autism, presents with larger head size, few structural brain abnormalities and has a ratio of 7:1 boys to girls.
This is a huge confounder to any epidemiological study, even a well designed one, that looks at all cases of diagnosed autism with out differentiating between groups with different phenotypes.
In discussing research into the causes of autism (in this case the genetic cause), one of the researchers commented, “…Studies haven’t found anything because they’re looking at a big heterogeneous group — a mishmash of people with different etiologies,” Takahashi said.”
One could postulate that only the larger head size group displays autistic symptoms because of mercury poisoning, as mercury toxicity does not always present with impaired IQ; and because in vitro thimerosal toxicity studies preformed at the University of Kentucky showed that estrogen has a protective effect against, and testosterone exacerbates the damage of, ethlymercury as a neurotoxin.
In light of this new information it seems that a better question than, “is autism is caused by mercury toxicity” which is the question largely being asked in these epidemiological studies, would be, “are cases of mercury toxicity being misdiagnosed as autism”.
The answer to that question cannot be found in a large epidemiological study.
The authors of the the final IOM report on the thimerosal/autism relationship in 2004 stated themselves that the epidemiological research it was relying on to clear thimerosal as a cause of autism would not pick up on a sub-set of the population that was genetically vulnerable to mercury poisoning.
If that is the case, then how much more so to these studies fail to give us meaningful data if the children who may be mercury poisoned are members of two different subsets being confused with one another?
Unfortunately, well-designed studies take a while to complete and publish.
Well designed studies do take time to complete and publish.
This is further delayed that by the fact that health authorities are neither attempting to complete or publish them. Despite years of parents requests, the public health authorities have not yet begun to design, fund or even discuss studying the effects of thimerosal on developing children, nor the safety and effectiveness of chelation on autistic patients.
[Update: I have heard that there are 2 government funded studies getting underway on the effects of thimerosal. I will try to find them and confirm exactly what they are. Still no govenment funded chelation/autism studies.]
Thimerosal was invented in the 1920’s and it’s only safety test was carried out in 1930 on 22 patients with terminal meningococcal meningitis. Patients were followed for several days until their deaths. No long term health problems were noted in the study because the patients had no long term health.
When the FDA was created, thimerosal was grandfathered in and has never been safety tested it to this day despite the fact that it has been implicated in toxic illness every few years going back to 1947.
I will be repeating this point through out my critique of this paper.
This delay left an information vacuum that a number of people immediately began to fill with assertions that autism definitely was or certainly was not caused by the thimerosal in vaccines. This did not make any progress toward settling the question, but instead polarized the issue before the arrival of any real data.
The findings in the Denmark study have come under serious criticism. When the data of study was reviewed, it was found that the sampling presented fatal flaws. The low incidence of autism during the use of thimerosal can be attributed to the fact that the database that was used only tracked inpatient cases of autism at the time. At the point in time where thimerosal was removed, the database was expanded to include cases that were diagnosed at a large clinic outside of Copenhagen where 20% of the countries autistic patents were diagnosed. At the point in time where thimerosal was no longer used, but the cases of autism seem to have skyrocketed, the database had expanded further to include all cases of autism, inpatient and outpatient, in the country.
The study is further compromised by the fact that several of the coauthors were employed by the Statens Serums Institut, the government owned vaccine manufacturer who would be held liable if it was indeed found that the use of thimerosal in vaccines contributed to autism.
[Update: Kristjan has pointed out here that the Danish health care system and liability laws are different from ours and no such legal liability exists for the Statens Serums Institut. I still wonder what might motivate these researchers to stand buy this study and not protest its poor use. More on that in the comments here, here and here.]
Finally, even if the study were reliable, applying it to the U.S. population as the IOM has done presents problems. Children in Denmark were administered less than half the amount of thimerosal of US children and it was given over a longer period of time.
Further, American children are subject to an autism rate at least 10 times that of Denmark. It seems to me to be like doing a study of Sickle Cell Anemia in Denmark and applying it to the population of Baltimore. Clearly children here have some other intervening factor that increases the threat, be it genetic, environmental or even the thimerosal dosage.
As for Canada, I have seen this mentioned in several places, but I have never seen the actual study. If you have it or know where I can find it, can you please email me so I can look at it? Thanks in advance.
Update: Shannon from British Columbia reports that there is no Canada study or even any Canada data to be studied. She reports that they don't keep track of autism rates and don't offer services. She also reports that thimerosal removal from vaccines was left up to the provinces and that many are still on the shelves. See her comment in the section below for a more detailed explanation.
Additionally, while the childhood vaccines in the US included three (DTP, HiB, HepB) with thimerosal, in the UK, for the past two decades, only the DTP vaccine contained thimerosal. This meant that, despite having a constant thimerosal exposure for nearly twenty years, children in the UK experienced the same rise in autism prevalence.
I think that it is clear that the VAERS is a poor source for such studies. The CDC’s Vaccine Safety Datalink is a much better source, but the CDC has blocked it from being reviewed by independent researches despite the fact that congress has directed it to do so and claims that disallowing such access is a violation of federal law. The one team granted access in 2003 was severely limited in what they could do and thus their research effort, although it found a dramatic link, was completely tainted by the process and seems to me somewhat of a false start.
The CDC claims that they welcome research applications, but at last check they had not accepted any.
Testing for mercury
Dr. Laidler seems to be saying that contamination during collection and overnight shipping can skew results, but I don’t feel that he has properly addressed the possible process by which mercury would begin to appear in urine samples that had none at the time of excretion.
Many practitioners who advocate chelation routinely use “provoked” or “stimulated” excretion studies. To do this, they administer a dose of a chelating agent (more about them later) and test the urine a few hours later. This practice will routinely and predictably elevate the urine mercury level to several times the “unprovoked” or “unstimulated” level.
What is not mentioned in this discussion of “provoked” excretion studies, is the context in which the study becomes valuable. The working theory in this case is that some autistic children are actually members of a sub-set with a genetic impairment to excrete heavy metals such as mercury. Straight forward blood, urine and hair tests for mercury that would identify mercury toxicity in typical subjects who have been victims of a large mercury exposure would be useless in identifying mercury toxicity in people who have no ability to excrete mercury.
In order to find out if these types of subjects have mercury in their tissue, it must be stimulated. If it is excreted in the urine after the introduction of a chelating agent, then it was present in the body tissue.
Since the normal values listed on the laboratory report are for “unprovoked” specimens, the results will be much higher than normal and can appear alarming.
“Normal values” seem to mean little in these results. When mercury is excreted during a DMSA challenge, it cannot be taken as a true measure of how much mercury is in the tissues. Like clowns coming out of a car, you don’t know how much is in the body until you count all of it when it comes out.
Several factors complicate a getting a true picture of how much is in the body, one being that DMSA binds to lead more readily than to mercury, so if lead is present, the mercury level may be artificially depressed.
Doctors have reported patients excreting up to three and four hundred times the mercury that the baseline showed on the initial challenge.
The only thing that can be said with much certainty is that if you give a chelating agent, and mercury comes out, then it was in there and treatment should continue until it stops being excreted.
The cost of many of the mail-order labs is also a significant concern. A brief survey of some of the bigger mail-order labs revealed that they charge between $175 and $300 for a “panel” of urine metal tests, including mercury. The local hospital lab charges $35 for a urine mercury test.
Being a parent that has paid $300 for such urine metal tests, I am all for lowering the price. However, if I woulda known then what I know now, that the first time I did such a test on my son I would find mercury and lead, and that the chelation we have done as a result would help my son make the progress that he has made, I would happily sign my car over to the lab that delivered me these results.
But that's just me.
[scarcasm alert]I believe a good way to lower the costs of the test in this free market, would be many labs offering this standardized test, and doctors regularly screening children with ASD, ADHD, verbal and developmental delays, and those who have exhibited symptoms of vaccine injury after thimerosal containing vaccines, for mercury poisoning. That might be something that the government could look into.
In most cases, the other metals included in the “panel” or of little or no use—there is no research or clinical data that connects some of these other metals to any disorder whatsoever.
I need more information from Dr. Laidler on this point. Does “no clinical data” mean that studies have been done and no connection has been found, or that no studies have been done?
Another questionable practice is the use of fecal mercury levels. The mercury in feces is a combination of ingested mercury (minus the amount that was absorbed) and any mercury excreted into the feces (usually in the bile)—there is no way to truly know how much mercury is being excreted without knowing the amount ingested and the amount absorbed. One thing that is certain, however, is that the fecal mercury level will be higher than the actual amount of excreted mercury, because of the mercury in the food we eat, the water we drink and the air we breathe.
I don’t know any families who have relied on fecal mercury levels in order to make a decision on whether or not to chelate, nor have I read of doctors relying on them. It seems an inaccurate measure of mercury toxicity for all the reasons you mention. Can anyone point me towards a source that recommends relying on it so I can further look into this?
This brings us (at long last) to chelation.
The role that glutathione may play in autism is still emerging. Just a few months ago a study was released that found that 80% of autistic test subjects had some degree of glutathione depletion. After reading this I began supplementing over the counter oral l-glutathione and his speech began to progress more rapidly. He went from taking several minutes to put together a simple three word sentence, to spontaneous three and four word sentences in the matter of two months, and a week ago he began pointing things out to me (with his finger), saying, “look, look. Rain”.
I am genuinely interested to know specifics about exactly what it is doing and why such a weak chelator would be so helpful to him. I am looking forward to the question being studied further by federal health authorities.
Another widely used chelating agent, EDTA, not only has little affinity for mercury, but is also not absorbed when taken orally—it must be given intravenously.
There is now a product call Detoxamin that is EDTA in suppository form. Is this well absorbed form? Just curious.
The two agents that are most effective for chelating mercury are 2,3-dimercaptosuccinic acid (DMSA) and 2,3-dimercaptopropane-1-sulfonate (DMPS)
I am grateful to Dr. Laidler for pointing out that DMSA has a good safety record and is the standard treatment for lead poisoning. I have read many poorly researched reports that claim that all chelation is dangerous and it is quite frustrating.
DMPS has a long history of use in the Soviet Union, but has more toxicity problems. DMPS is popular with some practitioners because it causes a very large rise in mercury excretion, primarily by prompt clearance of kidney mercury stores, making it very useful for “provoked” mercury testing.
In my experience, this is becoming more generally agreed upon in the autism community, although there are some doctors that have used EDTA and DMPS. I think that the trend seems to be coming back around to the use of DMSA.
The sulfur-containing groups in DMSA (there are two) are mercaptans, relatives of the odorant that is put in natural gas to make it smell bad. In short, it stinks. This can be a problem not only for the child who has to take it, but also for the entire family, as urine that contains DMSA will also have a foul, sulfurous smell. While some manufacturers claim to have overcome the smell “issue”, if the urine doesn’t smell foul, there is no DMSA being excreted and, therefore, no chelation happening.
While it is true that a sulfur odor does present itself, it has never occurred to me that it was a ‘problem’ or even something that a parent might take into account when deciding whether or not to chelate a child with mercury poisoning. Changing diapers more often or airing out the bathroom is little price to pay for a chance to get back your healthy, thriving child.
I did read about one family whose son carried an incredibly strong, unpleasant odor at all times during the first 6 weeks of his chelation. They lived with all the windows open and joked about all the stinky toxins that he was shedding.
They seemed really happy to have his odor problem replace their little boy’s autistic symptoms.
One preparation that deserves comment is transdermal DMSA (or DMPS)—a cream or ointment that is rubbed onto the skin, presumably to chelate mercury. Both DMSA and DMPS are highly water-soluble and do not dissolve well in fat or oil, which means that they most likely won’t be absorbed through intact skin. It is interesting to note that none of the individuals or corporations selling this preparation has—to my knowledge—performed the simple test necessary to prove that it is absorbed. In the absence of this simple bit of data, it must be assumed that it is not absorbed.
Many doctors use this in conjunction with or following DMSA chelation because of its presumed ability to better penetrate into the brain. We have found adding ALA to our son’s chelation accelerated his progress.
Dr. Laidler again notes that ALA has not been tested. I would like to note that parents have been requesting chelation studies be conducted or funded by the national health authorities to no avail.
A number of naturopathic remedies claim to remove mercury and heavy metals, but this claim is often based on the parent plant’s ability to remove mercury from the environment. As a result, these naturopathic remedies may themselves have a high degree of mercury contamination. At any rate, none of the naturopathic “chelating agents” have been tested to support their claims. In the final evaluation, only DMSA offers the combination of safety and effectiveness that would warrant its use. DMPS is a close second, limited only by higher toxicity.
My son, like many autistic children with intestinal yeast, can have an increase in hyperactivity while on oral DMSA, so rounds of chelation are spaced out so that a healthy gut can be maintained. Such breaks in chelation also allow for mineral supplementation to assure that the body is not stripped of necessary nutrients during chelation.
No significant adverse drug interactions have been reported with DMSA, but most of the children who received DMSA for lead poisoning were not taking other medications—and most of this experience predates many of the medications used
DMSA is available only by prescription and should only be administered under a doctor’s care for just such reasons. Unfortunately, so few doctors are treating autistic patients, for what is ultimately a medical disorder, there are just not enough good doctors to go around.
[UPDATE: Apparently you can get DMSA with out a perscription, which seems odd to me. IMO it should be only used under a doctors care.]
Also... long term studies of chelation should be undertaken by the CDC... but you knew I was going to say that.
Finally, there are as many dosing schedules for DMSA as there are practitioners who make claims about it. As perhaps a ridiculous extreme, one practitioner has asserted that DMSA must be given every two to three hours around the clock! This person also insists that failure to follow this schedule will result in more mercury being deposited in the brain. Fortunately, this is absolutely wrong! Doses as infrequent as once a week have been effective at removing mercury and lead, although at a much slower rate than the recommended dosing schedule of three times a day.
Until the mercury/autism connection is properly studied and the results are treated with honesty and transparency, chelation for children diagnosed with autism will remain to be part science, part guesswork. Yet another reason that the health authorities should do its due diligence and investigate chelation as a treatment for autism related mercury poisoning.
To say that there is "no data to support the connection" is not correct. There is a great deal of data, but the data is not conclusive. It consists of in vetro studies, primate and rodent studies, case studies and small population studies.
Many authors and investigators can still make the point, as Dr. Laidler does, that there is “no convincing data” because the health authorities charged with funding and disseminating such studies (on the scale that people are 'convinced' by) are not doing their job.
Chelation remains one of the most promising medical treatments for what is commonly diagnosed as ‘autism’, yet the government chooses to spend money instead on long term genetic research that will be of no benefit to children who were diagnosed with autism today.
The first large scale research project into chelation for those with autism is just getting underway at the University of Arizona. It is being funded by anonymous private donors.
 Mercury testing.
I don't think that Dr. Laidler has made his case that the information you get for your $300 is "of questionable accuracy and minimal utility". It was mighty accurate and useful to us.
 Chelating agents.
It is true that there are no guarantees that getting the mercury out of your child will cure their autistic symptoms, just as there is no guarantee that chemotherapy will cure cancer. Most parents faced with either situation are likely to give their child the chance at recovery even if the odds are not 100%. I do know of two children who did not respond to chelation therapy. Neither child was harmed by it and neither of their mothers regret trying it.
We have no guarantee that tomorrow, the last drop of Hg won't tumble out of our boy and his wonderful progress will come to an end. If it does, we will make yet another one of those course corrections that parents of special kids have to make. But at least we will know that we got him as healthy as we could.
2. The studies that have looked at removal of lead by chelation (that Autism Diva has looked at on pubmed) showed no improvement in IQ or behavior, (or both?)
This makes logical sense. But this has not been my experience.
My son called me mommy until he regressed at 18 months in the fall of 2003. In June of 2004 I gave him 300mg of DMSA for his chelation challenge to see if he had mercury toxicity. He was given the dose around 8am and about 6 hours later he called me ‘Mommy’ for the first time in almost a year.
I was in my bedroom cleaning, and he came in and started pulling on my hand. I was trying to finish my task before I went with him to see what he wanted, so I was looking away from him. I thought I heard him say ‘mommy’ so I looked down, and instead of pulling my hand toward the door and looking toward where he wanted me to go, he was looking at my face and called me ‘Mommy’ three more times. I was completely stunned.
At that point I expected that his tests would come back positive for mercury, and they did. There was no question after that whether or not we would try chelation on him.
To respond to Autism Diva’s very good point, I no idea as to why DMSA would have an effect like this if his mercury has caused brain damage. It makes no sense that my son would improve that drastically in 6 hours.
I would REALLY like the federal government to clear this up for Autism Diva and me. They could... oh I don't know... do a study or something?
Some of the autism/mercury parents think their kids got toxified while in the womb from a rhogam shot that had thimerosal in it.
Again I must repeat my mantra. There is no evidence that Rhogam plays a role in the development of autism because it has never been studied.
A year ago Lyn Redwood, the head of Safe Minds, was invited personally by Dr. Julie Gerberding, head of the CDC, to submit a wish list of research proposals to her. Among the requested research was a study to see if Rhogam could be involved with the development of autism. I spoke with Lyn last week and she said that neither the CDC nor Dr. Gerberding has never responded to the list that they asked be submitted to them.
I am a Rhogam mom and was surprised that this had not been looked at yet. I am waiting for the CDC and the FDA to go ahead and do this very necessary safety study on an injection that that they have already approved on pregnant women.
but besides that, they think that they can chelate the kid NOW and affect proposed damage do when the brain was developing? They obviously have no clue about brain development and probably have never looked into Fetal Alchohol Syndrome. There’s nothing that undoes that, but the kid can learn to use what he has to the best possible extent.
Autism Diva will get no argument from me (except for the part where she suggests that as the parent of an autistic child I am clueless about brain development).
Why did my son respond so quickly?
I think that the government should study it and find out.
3. Because there’s no way of knowing how much improvement in a child’s behavior and abilities is the result of natural developmental processes, the only accurate way to test chelation would be to perform double-blind studies with autistic adults.
As in Bonnie's case, the anecdotal evidence I have seen seems to suggest the older you are, the less effective chelation is on autistic symptoms. The best results seem to be for children under five and progress seems to really slow down as children age.
I have read several stories though from people who have tried it on their teenagers and even on adults and some progress has been made.
Say it with me:
Sounds like something that the government should study.