July 30, 2005

File under: Things That Call For A CDC Study

The following is an article on Chelation that was brought to my attention by Skeptico and I thought that it was a great article to address as a parent who is currently chelating their child.

Chelation & Autism
Jul 27, 10:41 AM
by James R. Laidler, M.D.

Can chelation help autism?

Chelation is a legitimate medical therapy for disorders caused by an excess of certain metals. Copper, iron, mercury, arsenic and lead are all metals that can cause toxicity disorders that are successfully treated by chelation. Since about 1985, when the idea that autism might be caused by mercury poisoning first arose, many practitioners and groups have promoted chelation as a treatment for autism.

Clearly, the first question that must be settled is whether autism is caused by mercury (or other metal) toxicity—if it is not, then there is no point in treating it with chelation. Unfortunately, this question has become one of many “hot topics” in autism, with much heat and emotion obscuring the scientific data. The first step, then, is to look past the emotion and political maneuvering and examine the data.

When it was first proposed, the idea that autism might be due to mercury poisoning showed a good deal of promise. After all, mercury is a well-known neurotoxin and, additionally, was used as a preservative (thimerosal) in the vaccines children received. With a degree of biological plausibility and a known exposure, the next step was to look for epidemiological data.


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.

Lurking in the background, undetected in the tumult, were data that could have pointed the way. At least two countries—Canada and Denmark—had removed thimerosal from their vaccines in the 1990’s (Canada 1994, Denmark 1992) and yet had both experienced rises in autism prevalence similar to those in the US and UK.


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.

In 2003, the first study, from Denmark, showed that the prevalence of autism in that country had risen steeply even though thimerosal had been removed from vaccines in the early 1990’s. This study was greeted by howls of outrage from some that advocated the connection between thimerosal/mercury and autism—the authors were roundly disparaged and their integrity and objectivity were impugned. This did not change the fact that the autism prevalence in Denmark has continued to rise, following the same pattern as autism in the US and the UK.

In September 2004, a study from the UK showed no association between thimerosal exposure and autism . At the same time, a review of ten epidemiological studies of autism and thimerosal found that the few studies that found an association between thimerosal exposure and autism had serious methodological flaws. Chief among these flaws was using the Vaccine Adverse Event Reporting System (VAERS) as a source of data.

The chief problem with the VAERS data is that reports can be entered by anyone and are not routinely verified. To demonstrate this, a few years ago I entered a report that an influenza vaccine had turned me into The Hulk. The report was accepted and entered into the database.

Because the reported adverse event was so… unusual, a representative of VAERS contacted me. After a discussion of the VAERS database and its limitations, they asked for my permission to delete the record, which I granted. If I had not agreed, the record would be there still, showing that any claim can become part of the database, no matter how outrageous or improbable.

Since at least 1998 (and possibly earlier), a number of autism advocacy groups have, with all the best intentions, encouraged people to report their autistic children—or autistic children of relatives and friends—to VAERS as injuries from thimerosal-containing vaccines. This has irrevocably tainted the VAERS database with duplicate and spurious reports.


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

What, then, about the parents who have tested their children and found their mercury levels high? These children may have a legitimate problem with mercury poisoning…if the testing is valid. While laboratory accuracy—and cost—is an issue with many of the “mail-order” labs, a more serious problem is the manner in which the specimen is collected.


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.

[Update 2007 - the free market prevails. My son's last urine toxic metals test this month cost $65]

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?

[Update 2007: I have not heard of fecal mercury levels being used in the two years since this was written.]

This brings us (at long last) to chelation.

Chelation—what it is and how it works

Chelation works by using a compound has a stronger attraction (affinity) for mercury than the tissues of the body. Since mercury has a very strong affinity for sulfur, all the effective mercury-chelating agents contain sulfur. This does not mean that any sulfur-containing molecule can act as a chelator, since body tissues also have sulfur-containing components, which are what the mercury binds to. An effective chelator needs to have a higher affinity than body tissues.

This simple fact eliminates some of the compounds that are being touted as chelating agents for mercury. Glutathione, for instance, which has a sulfur-containing amino acid, is not sufficiently greater in its affinity for mercury than the body tissues to be an effective chelator.


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)
. DMSA has been widely used in the US—primarily for lead poisoning—and has a good safety record.


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.

DMPS is not approved by the USFDA for any purpose, primarily because it offers no medical advantages over DMSA and is more toxic. Both can be given by mouth, but only DMPS is available in an intravenous form. Given that there is little or no difference in their effectiveness, a practitioner who wants to use DMPS should be viewed with suspicion.


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.

Lipoic acid—a sulfur-containing fatty acid—has also been touted as a chelating agent, although its effectiveness has not been well studied. It has the advantage of being considered a “natural” substance, but the few studies that have examined it have found it less effective than DMSA . It is fat-soluble and can potentially cross the skin, but this has not been tested. Its fat-solubility may (or may not) allow it to penetrate the brain tissue better, but this has also not been demonstrated.


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.

[Update 2007: We used ALA for a time with Chandler, but it seemed to feed the yeast in his gut and lead to hyperactivity so we did not use it for long. It has fallen out of favor with most DAN docs for this reason.]

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.

Safety of chelation

Common less serious side effects of DMSA include nausea, vomiting and diarrhea. Skin rashes have also been reported—these are often erroneously referred to as “mercury rashes” and attributed to the removal of mercury. Regrettably, the same rashes are seen in people who have no mercury toxicity and are merely due to a drug reaction. A rare and unpredictable reaction (and potentially lethal, if not treated promptly) is Stevens-Johnson Syndrome, a severe drug reaction that presents with lesions on the skin and in the mouth and gastrointestinal tract.


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
for autism. Increased zinc and copper excretion has been noticed in animal studies, but this is apparently easily corrected by moderate zinc supplementation. Copper supplementation is generally not needed.

The more serious side effects of DMSA are primarily bone marrow suppression and liver injury. In the thousands of children who received DMSA for lead poisoning, somewhere between 1% and 3% developed either elevated liver enzymes (a sign of liver cell injury), low white blood cell and/or platelet counts (a sign of bone marrow suppression) or both. In all cases, these abnormalities resolved after DMSA was stopped. However, these children were being monitored with frequent blood tests and received treatment for less than three months.

There is a danger that long-term use of DMSA without close monitoring could lead to irreversible bone marrow or liver damage. This has not yet been reported, but is a compelling reason to limit the duration of DMSA therapy and to have blood tests done every one to three months. The safety of DMSA—taken for less than six months—is well-established, but this safety has not been demonstrated over the long-term.


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.

Summary:

[1] Is autism due to mercury?

There is no convincing data supporting a link between mercury or thimerosal and autism. This is not to say that mercury and thimerosal cannot cause autism, just that there is no data to support the connection.


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.

[2] Mercury testing.

Mercury testing, especially if done with a mail-order lab, can be both misleading and overly expensive. If you truly suspect mercury poisoning, spend $35 for a urine mercury test at your local clinic or hospital—don’t spend up to $300 to get information of questionable accuracy and minimal utility.


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.

[3] Chelating agents.

Many of the remedies promoted to remove mercury and other heavy metals are either not effective, not safe or both. Of the available chelating agents for mercury, DMSA offers the best safety and the best effectiveness.

[4] Safety.

Despite its impressive safety record, DMSA is not without side effects. Long-term treatment with DMSA has not been studied (insert comment about how the government should study this-ed) and may result in serious problems. Close medical monitoring is strongly recommended if you decide to use
DMSA therapy on your child.

* * *

Comments
1. Is it not also true that even in the legitimate use of chelation for lead poisoning, there is no expectation of reversing whatever neurological damage has already occurred? I would think this would be another strike against the credibility of chelation for autism.
— Lisa Randall Jul 27, 03:37 PM


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?)

Brain damage in general is not seen as reversible.


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.

There’s no evidence for that...


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 Jul 27, 03:46 PM


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.

If you’re interested in an unscientific anecdote, I had all of my amalgam fillings removed 10 years ago and took chelation supplements for a few weeks. It was my dad’s idea; he is a major health faddist, antivax, supplements out the wazoo, toxic fumes in the woodwork, you get the idea.

I noticed some improvement in my sense of smell after having the amalgams taken out, but the main benefit was just the nice new pretty composite fillings.

I’m still just as autistic as ever.

So is my dad…
— Bonnie Ventura Jul 28, 09:38 AM


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.

20 comments:

Linda said...

Can you give more information on where to purchase the OTC L-glutathione? The only source I have found charges about $100.00 for 2 ounces.
Thanks!

Ginger said...

We are giving him oral, not transdermal. It comes in capsules that I break open and mix into baby food or apple sauce.

I got it at The Vitamin Shoppe and it was not expensive.

Kristjan Wager said...

"The study is further compromised by the fact that several of the coauthors were employed by the Staten Serum Institute, 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."

Actually, Statens Serums Institut would not be held liable if the use of thimerosal was found to cause, or contribute to, autism, unless it was administrated after the link was known.
The Danish legal system is vastly different than the US in this sense.

Also, the vaccinations are part of public health program, which is also the one that helps finance the care of autistic people. So, there is no financial reasons why Statens Serums Institut would want to cover up the connection.

There might be valid criticism of the studies, but refering to their connection to Statens Serums Institut is not among it.

I am at the moment working on a piece that provides more information about the issue, which likely will be posted by Orac at his site within the next few weeks.

Ginger said...

Kristjan,

Thanks for the input.

Even if they could not be held legally, financially liable under Danish law to their own citizens, would they still not have other reasons to see the vaccines that they manufacture cleared?

I understand that they export products to other countries including the United States. Would implication of their products in the role of autism hurt that?

The reason why this represents a conflict of interest, and certainly cannot in my mind be considered an independent study, is that it was done by people with a vested interest in the Statens Serums Institut who produce the product in question.

It seems to me we don't even need to know exactly what they would have to gain (profits, public trust, etc) merely that they do have something to gain from clearing thimerosal. It could be many things beyond financial gain including the reputations of their products, staff, company or public health programs. It could be something that may not be public knowledge. It could be many, many little things.

Even if one chooses to discount the potential financial interest completely, just the fact that what we are considering here, that doctors and researchers who went into practice to heal people could have been involved in the mass poisoning of children, seems reason enough to for the authors to want to not find that thimerosal is connected to autism.

Doctors don't like to be wrong and there is evidence that they really don't want to be wrong about this.

The reason that the potential for conflict of interest is important here, and the reason I listed it last in my piece, is that seeing the glaring flaws in the study begs the question, "if these are independent researchers who are really looking for a relationship between thimerosal and autism, then why would they put out such a horribly flawed study"?

The answer seems to me to be that they are not independent. Denmark is a socialist country and the Statens Serums Institut and the public health authority are part and parcel of the same system. Everything seems to be connected there, from top to bottom. It seems difficult there to even begin to unravel whose interest is conflicted by what.

I also want to propose the question: how often do you find corporations and governments or even individual public health officials or doctors freely admitting to being culpable in large scale public health problems?

How much more resistant would they be in a case like this where it may be that they are taking fragile children and giving them a lifelong neurological disorder?

I am glad that you will be doing a larger piece on this, as it was only a small paragraph in my piece and deserves more attention.

I would like to offer up some question for you to consider addressing in your piece that would, if you can provide good answers to, go farther in clearing the authors in my mind:

What is the structure of the public health system in Denmark, the associations and divisions between companies and the government run system and what measures are in place to minimize conflict of interest between the state owned Statens Serums Institut and the state run public health authority?

What is the track record of both entities, have there been examples of health problems as a result of a lack of accountability between the two, or a lack of oversight of either?

Who are the individual authors, what are their backgrounds, specialties, work histories, employment at the time of the study; and what research projects have they participated in and who were they funded by.

Were they aware of the problems with the database they were using at the time they were working on the study, and if not when was it brought to their attention?

Now that it has been brought to their attention, do they feel that it fatally compromises the findings and conclusions of the study? If not, why not? If so why have then not withdrawn the study?

Do they feel that their study is being properly applied by IOM, CDC, AAP and individual pediatricians in the U.S. when it is relied upon to make health decisions for American children given the dramatic differences in exposure to thimerosal and prevalence of neurodevelopmental disorders between the two populations?

Even if they do stand by the studies methods and conclusions, given that the IOM noted in their 2004 report that such epidemiological studies would not detect a subset of the population that were damaged by thimerosal due to a genetic anomaly that left them unable to excrete heavy metals like mercury from their systems, do they still think that their study can be offered up as evidence of the safety of thimerosal for all children?

Given that the CDC commissioned the studies, and that the CDC itself may have a conflict of interest (being that if thimerosal is implicated in NDDs, the CDC didn’t consider the rising mercury content on the schedule of recommended vaccines as they added vaccines to the schedule and are therefore responsible for injury from thimerosal) another layer of potential conflict of interest may exist. What was the communication between the two groups like and was there any encouragement, real or implied, that they find no link between thimerosal and NDDs. (I think that it is likely that their answer would be no, but I would still like to have them on record saying no and offering any documentation of communication between the two groups so we could cross that concern off the list)
I don’t know the scope of the piece you are working on, it seems that it may be limited to the financial conflict of interest questions, but if it will cover the use of the study in US public health policy, I have more questions.

I hope that this is helpful in putting together a piece that will answer questions that parents have about this study and its authors. I think that is certainly useful to know what the criticism of your writing might be before you write it.

I look forward to getting more information on this.

And thanks for the spelling correction. I will correct it in the blog entry.

Kristjan Wager said...

ginger, you raise many valid points, however most or all of them are based upon an US view.

First of all, Denmark is not Socialist - there is a welfare state, but the Danish government is right-winged. Actually the main party in the government is Liberal in the European sense, which is somewhat Libertarian, and the minor party in the government is Conservative.
The Danish government is in other words among the most right-winged in Europe.

That of course doesn't mean that such a government wouldn't want to try to cover things up.
However, the structure of the Danish political system means that there is a regular exchange of the government, and such a cover-up would provide able ammunition for the opposition, no mater how many years ago it happened.

We had a government resign in 1993 because the minister of Justice was found to illegally turn back refugees, so the political parties are very much aware of what results such a cover-up would have.

In regards to the export of vaccinations, you make a good point.
What you do fail to realize though, is that while Statens Serums Institut might export vaccinations, the primary role of it the institute is to reduce diseases in Denmark, and if employees of the institute tried to cover up on such a link, they would not only be fired, but also brought up on crimminal charges.

In other words, while it might theoretically be in the interest of the institute as a whole to cover up (and this I find doubtful), it is very much not in the interest of the individual employee to cover up.

Also, I find it somewhat troubling that you seem to think that people would be willing to willfully deny a link between thimerosal and Autism if it existed. What kind of monsters do you take these people for? These are often people trained in medicine, the art of curing people. To suggest that they would willfully cover up such a monstrocity, is amazing to me. Before answering this part, you might take into consideration that I have known people working there, and that I know people working in the Danish public system and with Autism in Denmark.

I will go more into details about the Danish political system, the Danish health system and the role of Statens Serums Institut in it, and probably other aspects, but I need to get hold of some data before writing the piece about it.

Kristjan Wager said...

"And thanks for the spelling correction. I will correct it in the blog entry."

Actually I hadn't noticed that you spelled it wrong, so that's not why I italized Statens Serums Institut. That's just a habit I have with the names of departments and institutes.

Ginger said...

ginger, you raise many valid points, however most or all of them are based upon an US view.

Undoubtedly. I don’t have much of an understanding of the Danish system that the research that sprung from so I am more than willing to defer to you or any other native’s good input on the subject

First of all, Denmark is not Socialist - there is a welfare state, but the Danish government is right-winged. Actually the main party in the government is Liberal in the European sense, which is somewhat Libertarian, and the minor party in the government is Conservative.

The Danish government is in other words among the most right-winged in Europe.

That of course doesn't mean that such a government wouldn't want to try to cover things up.

However, the structure of the Danish political system means that there is a regular exchange of the government, and such a cover-up would provide able ammunition for the opposition, no mater how many years ago it happened.

We had a government resign in 1993 because the minister of Justice was found to illegally turn back refugees, so the political parties are very much aware of what results such a cover-up would have.


All good background information on the checks in place.

In regards to the export of vaccinations, you make a good point.

What you do fail to realize though, is that while Statens Serums Institut might export vaccinations, the primary role of it the institute is to reduce diseases in Denmark, and if employees of the institute tried to cover up on such a link, they would not only be fired, but also brought up on crimminal charges.


This is what would be expected in the US as well, but here what parents who are looking for answers keep noting is that health authorities seem to be willing to investigate cases of medical misconduct in other areas, but that misconduct in the vaccine industry seems to be off limits.

Even some the most liberal politicians here who usually are all over this sort of problem, seem to have blind faith in vaccine manufacturers and public health officials when it comes to the vaccine program. Many note that it is a sacred cow and that ANY questions into its safety are discouraged. Even when there are HUGE unanswered questions exists (like the ones I am asking) go unanswered by these entities, and even when their behavior begins to be outright squirrelly in trying not to answer these questions.

Investigations are beginning to be opened, but it has taken years of screaming and finally a book to be published exposing most of this to move the political authorities forward.

In other words, while it might theoretically be in the interest of the institute as a whole to cover up (and this I find doubtful), it is very much not in the interest of the individual employee to cover up.

Again, one would hope that would be the case in both countries, but because I have seen evidence of misconduct here (proven in the case of Merck who knew in 1991 that children were being given hundreds of times more mercury than the FDA allowed and did nothing about it), I think that it is prudent to bring EVERYTHING out into the open and look for any problems, from mild bias to blatant fraud.

I am not asserting that because a potential conflict of interest exists in the Danish Study, that outright fraud has taken place. I am taking the position that because so many of the parties involved (in both countries are behaving in direct contradiction to the best practices of their fields, and because such seemingly odd conclusions are being drawn (that a neurotoxin injected directly into the veins of a baby at hundreds of times the amount the EPA allows don’t cause neurotoxicity) it is time to stop and check everyone’s work and sort this whole mess out.

Also, I find it somewhat troubling that you seem to think that people would be willing to willfully deny a link between thimerosal and Autism if it existed.

I totally understand why you find that troubling. It is a horrible thought.

But we already have evidence that a few people are doing that in the case of the Verstraten Study, which is currently under a congressional investigation in the US Senate and is being reviewed by three additional federal authorities for investigation. A much more detailed discussion of this is warranted, but I will leave that alone for now.

That being noted, I don’t think that most of the people involved are worthy of such a terrible accusation.

What kind of monsters do you take these people for? These are often people trained in medicine, the art of curing people. To suggest that they would willfully cover up such a monstrosity, is amazing to me. Before answering this part, you might take into consideration that I have known people working there, and that I know people working in the Danish public system and with Autism in Denmark.

This is a GREAT question and one that I am eager to answer. It really deserves a separate post. I will start working on that.

I don't believe that is the case. I think that it, most frequently has to do with basic flaws in human nature.

I touched on it in a comment on Skeptico’s site in regards to the IOM’s 2004 report. I will repost it here, although the context is not exactly the same:

The reason that I ask this specific question is that as I am looking into the entire thimerosal question, the history, politics, who knew what and when and all that, the bit picture I beginning to see in the public health policy is not a Watergate type conspiracy (which Mr. Kennedy's [Deadly Immunity] hyperbole leans toward) but a situation where as the information on prevalence and risk is bounced from department to committee, it seems that each group moves the ball a yard or two down the field toward "no relationship". This seems to be punctuated with a few incidents of evident shenanigans like the Verstraten Study and the IOM final report.

The first time the information in the VSD was studied there was a HUGE relative risk found between the amount of Hg administered during the 6 month visit and the relative risk for autism. The team spent 6 months 'improving' the study and got it down to just a big relative risk, then spent more time 'improving' and took it to Simpsonwood. They had lots more ideas for improvement, and when it was presented to the IOM a year after it was supposed to be completed in the first place, it found a little bit of risk. By the time it was published it found no 'consistent' risk.

The information moved through the ACIP, the IOM, the AAP and the CDC and at each step seems to be characterized farther and farther from what the original interpretation of the data showed and by the time the information reaches the parent in the news paper or the doctors office, it has been watered down to "there is trace amounts, but we don't think it causes any problems".


In the case of the Denmark study, it could well be that they went into the study with the bias that thimerosal didn’t really have much to do with autism, but they would do a cursory study. Because they didn’t really take the theory serious enough, they were just sloppy in their work and didn’t look to see if problem in the changes in the populations included in the database could have skewed the results.

I will go more into details about the Danish political system, the Danish health system and the role of Statens Serums Institut in it, and probably other aspects, but I need to get hold of some data before writing the piece about it.

Take your time. Each piece of this puzzle is complicated and I think that each deserves a detailed review. I look forward to reading yours.

Ginger said...

Kristjan,

I have another question and comment, that does not really belong on this thread. Can you send me your email address so I can send it to you off list?

Thanks,
Ginger

Kristjan Wager said...

ginger,

I should have sent you an email, but if you have received it, I can be reached at public@kristjanwager.dk

sysyphusian tax said...

Dr. Laidler's article pointed out that you can get a mercury urine test at a regular lab for about $30 dollars, why are you saying that "free market forces" _might_ bring the cost down from $300?

If you want to save money have the test done locally, not from a possibly fraudulent mail-order lab.

There's no reason to believe that lead has anything to do with autism, but you just assume that it does.

The studies that have been done in vitro and on lab animals are not compelling, in fact the Hornig mouse study and the hair studies showing higher mercury in the the _norma_l kid's hair (one of them had the normal kids hair at outrageously above normal levels) are junk.

Hornig's study is hysterical, have you read Autism Diva's post about it? How about Prometheus' post?

I think it would be good if you would slowly start to think that maybe mercury had nothing to do with your child's autism. That way you can open your mind to the evidence that shows that you've been misled by the people who say that your son is mercury poisoned.

The Denmark study showed that when they took the thimerosal out of the vaccines the rates of autism went up, but they added in a different source of autistics to make the rate go up... so says everyone...

SO what? All you need to prove now is that the rates of autism went DOWN. Even if the rates of autism stayed the same then taking the thimerosal out didn't do a thing to the autism rates.

What about Australia? What about Russia? There is no pattern worldwide that shows putting thimerosal into vaccines makes rates go up and taking it out makes it go down. Russians supposedly took the thimerosal out 20 years ago and now according to a visiting Russian expert, they are finding more and mroe autistic kids in Russia. That was on the Autism Diva blog.

Your son is beautiful. I don't think he's poisoned at all.

I also think you are a good mom trying to do the best you can.

Ginger said...

ST,

Thanks for the compliment on my mothering and my beautiful boy. He is, indeed, a work of art.

My "free market forces" paragraph was more of a tongue in cheek excuse to get doctors to screen for hg toxicity in kids with speech problems as it is a CDC recognized symptom of hg.

On a more serious note, I am looking for evidence that such labs engage in fraud or even poor practices that might skew results. Dr. Laidler didn't mention any. Autism Diva pointed me back to Dr. Laidler and said he wrote something on it a while back.

I am certianly intersted to know if any one has tested the testers and if they failed, what was their response to the news and did they change practices.

If you know where I can find it, please point me in that direction.

There's no reason to believe that lead has anything to do with autism, but you just assume that it does.

I was not inferring that lead had anything to do with autistic symptoms, merely that when you are looking at the accuracy of the tests, if lead is present, it will be masking the presence of mercury.

Chandler tested positive for lead, but I don't think it has anything to do with his symptoms. Mostly because it causes a lower IQ and my little one is a bright boy.

The only relationship that I know of is that the NIH/CDC/AAP "Autism Alarm" of Jan '04 encouraged pediatricians to screen for lead in children suspected of having autism, if Pica is present.

For those who don't know, Pica is when kids eat non-edible things like dirt and paint chips and what ever they find lying around. It can lead to lead poisoning in kids who are living in older houses.

Chandler is one of those. He eats everything. I think that he got his lead just before he was tested last year.

My older son crashed a chair into the wall and made a nice hole. I found chandler picking at the wall and eating it. Our house is 50 years old so he probably got some old paint.

My assumption is that lead poisoning in autistic kids is secondary to the illness, but needs to be treated immediately because there is the chance that these kids can't detox on their own.

All you need to prove now is that the rates of autism went DOWN.

Honestly, all these epidemology studes are interesting and helpful, but because there are many sources of mercury and because not all childrenare vulnerable at the same amounts. (As I mentioned that the IOM recognized, and further emphasized in my subsets of subsets arguement)

So all these studies need to be looked at very carefully to see what can be learned from them, but the mercury/autism for some autistic people theory does not rise and fall on them.

I am trying to go through all the studies one at a time, and I am still back at the first few, so I think it will be a while before I get to Hornig.

Orac and Diva set a pace that I can't keep up with. I am still posting questions to things they wrote about weeks and months ago.

At this point it is difficult for me to consider that mercury doesn't pay a role in chandler's symptoms. It was there in the tests, he responded to the treatment.

As I have written before, we can argue about studies all day long, but you can't argue with results.

I put him on the diet, he is happy and plays with us. I take him off the diet, he goes down hill, gets yucky tummy truble and eventually bites himself and others. During rounds of chelation, his speech improves, inbetween it he plateaus.

What you are kinda asking me to do is to not believe my own eyes, as well as the eyes of our friends and family and Chandler's own therapists.

I am not claiming that what has worked for Chandler will work for all kids. We know that is not the case. Neither am I asserting that all autism cases are a result of Hg Tx. Also not the case.

But if some kids autistic symptoms are excaserbated by the presence of it, should parents not be notified of that so that they can make an informed choice on treatments?

Anonymous said...

"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."

Phase I is a provoked Urine study to determine toxicity, and identify candidates. Given that blood is a "tissue", wouldn't you rather see a blood screen to determine acutal toxicity? Are you concerned that the study may be seen as useless in the scientifc community due to the provoked testing method of Phase I? If the goal of the study were to survive scientific scrutiny, why not use an accepted method for determining toxicity in the first place?

Anonymous said...

Hmmm, maybe I am wrong. All the references to the study I describe show it as Southwest College of Naturopathic Medicine - not the University of Arizona. Are you referring to something else?

Anonymous said...

I did read up additionally on blood testing vs. urine testing, and I apologize for suggesting blood testing. However, from what I see, provoked testing is considered fairly useless, even in the eyes of DMSA supporters like Dr. Elmer Cranton. Why not avoid provoked testing to appease the scientific community?

Shannon said...

Ginger, My page is a mess.

I would be suprised if your readers can find the facts (really you are fantastic about your bloc etiquette). Cu'mon, I just got to go for a walk around the block with my kid for the first time in 4 years - too busy doin' the happy dance of joy.

With your approval, I would love for you to "copy" the facts. Because, isn't that what we are all out for...

No bullshit, no games, no agendas, just the truth.

Do'C said...

"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."

Shannon

Here are some facts.
This study is being funded by the Wallace Foundation.
It is at the Southwest College of Naturopathic Medicine (not that it matters if they practice "good science") not the UofA or ASU. I discussed this study at length with James B. Adams PhD - the lead researcher - my conclusion? SHAKY SCIENCE

sexedman said...

Bloggs are such a wonderful way to plublish ones thoughts. Thanks for letting me visit and leave a comment. Love the theme of your blog Come by my site some time. It's got clear skin related stuff.

Lily said...

I am Lily.I live in Russia, Ufa. My son,18 was diagnosed as autistic as a child. I read everything accessible on autism and have just discovered this blog. Smb. said that OTC L-gluthathione helped. Does this medicine remove mercury or what is its effect? Is it possible to make an order to have it shipped to Russia. Or if it is really effective I could ask my American friends send it to me. How much is it? Is there any other effective medicine? What do you think about Magne B6, DMG and gluten-, casein-free diets? I am asking Americans because I do not believe in Russian psychiatry.

Ginger said...

Hello Lily,

Yes glutathione does help, along with the other treatments you mentioned. We have tried them all with out son and they have all been helpful.

Glutathione is not expensive and can be ordered online. It helps the body get rid of mercury and other toxins. Research shows that our children do make enough of it.

I encourage you to visit the web site http://generationrescue.org and see if they have any ideas on doctors there that can help you with the Defeat Autism Now approach to autism treatment that includes all the things you mentioned and much more.

I looked around for resources for you in Russia, but I am not finding any.

If you can email me directly at incoming@adventuresinautism.com I can give you more information on how to start helping your son.

Ginger

Justin Lofton said...

My wife and I believe that our 16 month old daughter is autistic and we are having blood tests done by our pediatrician. We have spoken to a DAN! doctor and are also interested in meeting with Dr. Michael Goldberg. Are you familiar with Goldberg? He is not a supporter of chelation but we not yet aware of the reasons why. Your thoughts?

Justin Lofton
justinl@tredent.com