OSR1, Autism and the Web: A Case Study in Confusion

I am endowed with Asperger’s

A recent British study of adults discovered the incidence of autism spectrum symptoms to be similar to the reported incidence of autism spectrum symptoms in children. Thus no sudden epidemic of autism. If mercury caused autism, there should have been a drop in autism in children, since in the past 50 years we have drastically reduced exposure to mercury. Mercury has a very high vapor pressure, and exposed mercury always enters the air.
To those not aware of the past exposure:
We used to break mercury thermometers and not clean them up.
Fluorescent lamps used to have much more mercury than now, and we routinely broke the lamps and didn’t worry about cleaning up the mercury.
We slathered mercurochrome on wounds.
We ingested mercury based patent medicines.
The gas meter on each and every home maintained the pressure set-point with a column of mercury, which entered the gas stream and burned at the stove top.
We heated our homes with coal, which contains trace amounts of mercury. The ubiquitous soot in old homes still contains mercury.
We used mercury based pigments and dyes.
Nearly every home had a thermostat with a mercury switch. Some of the “silent” type light switches had mercury switches.
Mercury compounds were/are used for tanning leather, and we had shoes and hats and belts and jackets treated with mercury compounds (recall the “Mad Hatter”?)

There is no mercury exposure mechanism which corresponds with the increased reporting of autism diagnoses, though the increased reporting does correlate well with the change in US government reporting rules in 1990 and the change in DSM IV in 1994.

Also removal of Thimerosal from vaccines did not result in a drop in autism diagnoses.

By the way, chelation also removes USEFUL and NECESSARY trace metals from the human body. At least one death has been attributed to chelation therapy gone bad.

Thanks, Bill. Actually, the makers of OSR1 do NOT claim that mercury is caused by autism (or by anything else, for that matter). Nor do they claim that OSR1 removes mercury, chelates, etc. Those claims are made by other organizations, based on an analysis of the compound.

Lisa

The story might be a little simpler than you are suggesting. As far as I am aware, all of the articles in the Chicago Tribune and LA Times were written by one journalist. This is the same journalist who has been attacked all sorts of alternative autism treatments for a while now. So the claims being made aren’t too surprising.

It does seem, at least to me, that this journalist likes to stretch the truth a bit in their claims. For example, the headline about the FDA saying that OSR is “toxic” simply isn’t true. Nor is the headline in the LA Times “FDA: Autism ‘Therapy’ Illegal” any better. The letter from the FDA does not call it “toxic” nor make a final ruling that it is “illegal” but rather questions whether it is a dietary supplement and whether it is safe. The FDA has a process for dealing with these sorts of issues, and we (and the Tribune) should wait to see what the FDA says before jumping to conclusions.

I did have a question about you saying “governmental sources”, with sources being plural. Other than the FDA, has any other governmental source weighed in on the issue?

Thanks for jogging my memory, Bill. I distinctly remember being drawn to that shiny thermometer mercury puddling in the palm of my hand! A “Quicksilver Girl” I was!

MJ – you’re right, that shouldn’t have been a plural. It was an artifact from a prior version of the blog… rewrote it a bit after a first draft. Sorry.

Lisa

MJ, thanks for pointing out that these two articles — one in the Chicago Tribune and one in the L.A. Times — are by the same reporter, namely Trine Tsouderos. I don’t know much about OSR, but every time Ms. Tsouderos has written about something familiar to me I could plainly see that she is extremely biased and her reporting is extremely inaccurate.

I received this statement by Dr. Jerry Kartzinel in an email from TACA:

Statement on the Recent FDA Investigation on the Supplement: OSR

Response to concerns about OSR#1:

The FDA has recently stated concerns about OSR. We will address some of these concerns in this communication.

CONCERN about OSR#1 being a “dietary supplement”

The Federal Food and Cosmetic Act states that a “dietary supplement” must bear or contain one or more dietary ingredients.

OSR#1 is a combination of two natural products: benzoate, as found in cranberries, and cystamine, which is found in all mammalian tissues. OSR therefore contains one or more dietary ingredients. If OSR were to break down in the body, it would release a benzoate and cystamine, both natural products; it therefore “bears or contains one or more . . . dietary ingredients.” CTI Science has in good faith followed the instructions on the FDA website, producing a compound that contains two natural products, and testing it to show no severe toxic effects and extremely low undesirable side effects (constipation, diarrhea) even at testing levels roughly 500 to 1,000 plus times higher than recommended for human use as an antioxidant.

CONCERN that OSR#1 is a drug:

Stating a dietary ingredient is an antioxidant alone intellectually means that it helps maintain glutathione levels and such claims should not be construed as claiming OSR#1 is a drug. If that were the case then ALL antioxidants would be drugs, including all dietary antioxidants being sold today.

CONCERN that the website is not truthful representing that OSR#1 “helps maintain healthy glutathione level” and “Both OSR#1 and glutathione scavenge free radicals, allowing the body to maintain its own natural detoxifying capacity”

These are true statements based on published research and ORAC evaluations.

CONCERN that this product is a “new drug”

No drug claims have been made. CTI Science has provided good data that OSR has a very good ability to scavenge hydroxyl free radicals as expected for an effective antioxidant as determined by its ORAC scores by a third party. CTI Science has in good faith followed the instructions on the FDA website, producing a compound that contains two natural products, and testing it to show no severe toxic effects and extremely low undesirable side effects (constipation, diarrhea) even at testing levels roughly 500 to 1,000 plus times higher than recommended for human use as an antioxidant. All of the toxicity testing data support an exceptionally low toxicity of OSR#1as the LD-50 of OSR#1 is undeterminable due to lack of toxicity, which is not the case for many antioxidants currently on the market.

CONCERN that OSR# l labeling fails to bear adequate directions for its intended uses

OSR has only been sold through medically licensed individuals who advise their patients. This was done as a precautionary measure to insure OSR#1, sold as a dietary ingredient and not a drug, would be evaluated by a medically trained person until GRAS status was obtained.

CONCERN that the website reports of temporary diarrhea, constipation, minor headaches have been reported and that these are rare and the actual causes are unknown. Also, there are concerns about the statement that “OSR# 1 is without detectable toxicity” and “OSR# 1 . . . has not exhibited any detectable toxic effects even at exceptionally high exposure levels.” Lastly, there is a concern that the animal studies conducted found various side effects to be associated with OSR# 1.

This can be complicated to explain. The side effects occurred in the “Up/Down” study to determine what extreme levels of OSR#1 would allow the LETHAL DOSE IN 50% of study animals (called the LD 50) of OSR to be determined. It turns out that the researchers could not stuff enough OSR#1 into the test animals to cause death, weight loss or ataxia (unstable gait) or any obvious signs of toxicity.

With over 1 million capsules sold and no adverse effects reported CTI Science thinks this supports the early conviction that there are no serious health problems associated with OSR if taken as directed. Also, the safety factor in the recommended level and what would be a possible toxic level is exceptionally large. OSR#1 has demonstrably lower toxicity and adverse effects than many dietary supplements that have been on the market for many years.

For more information on the OSR Product and CTI Science please see the CTI Science & Product Technical Information at: https://www.ctiscience.com/CTIScience/TechInfo.do

Statement Prepared by: DrJerry Kartzinel, MD FAAP

Kartzinel Wellness Center & TACA Physician Advisory Board

Original article on OSR & Autism

The makers of a compound do not get to decide if the compound is a drug or a dietary supplement: the FDA and the Congress do that. According to the laws and the FDA, Haley cannot market his compound as a dietary supplement. That’s absolutely clear, despite Haley’s apparent unwillingness to accept it.

It will be interesting to see what FDA will do if Haley decides to market his product as an industrial chemical that is available in easy-to-swallow capsules. There may be legal remedies for that.

Actually, the makers of OSR1 do NOT claim that mercury is caused by autism (or by anything else, for that matter). Nor do they claim that OSR1 removes mercury, chelates, etc.

Actually, the maker of OSR#!, Boyd Haley, has made a career out of linking mercury to autism. I heard him in Grant Park last May telling literally dozens of parents that mercury causes autism. He says the same thing when he testifies in court as an “expert witness”, although his testimony is rarely allowed.

In 2007, Haley explained his “new chelator concept” during a lecture the Autism One conference. He favorably compared his new concept to DMSA — an FDA-approved drug for the treatment of lead poisoning.

For example, the headline about the FDA saying that OSR is “toxic” simply isn’t true. Nor is the headline in the LA Times “FDA: Autism ‘Therapy’ Illegal” any better.

MJ, do you have any better examples? Reporters don’t write headlines.

ANB – perhaps I’m cutting it a bit fine, but while you’re right that Haley HAS made a career of connecting mercury and autism he has NOT said that this particular product does anything at all relative to mercury OR autism.

The same can be said of Wakefield. While he has, in fact, said many things connecting the MMR and autism, the controversial British study did not come to any specific conclusions on the subject. In addition, Thoughtful House’s website is clear that they do recommend vaccinations and do not specifically link autism and the MMR.

Personally I find it all a bit fuddling. If these folks do honestly believe in the links and are willing to say so publicly, why not then provide products/services to forward their theories in a practical fashion?

The fact remains, however, that the links are not being made by Haley or Wakefield, but rather by their followers AND by their detractors!

Lisa

ANB, the first sentence of the Chicago Tribune article linked to above says -

“A product promoted to parents of children with autism is not a harmless dietary supplement, as claimed, but a toxic unapproved drug”

I am assuming that the contents of the article were written by the journalist.

The FDA is pharma! Pharma does not like competition, especially from products that actually make people feel better. Pharma and their robots ( FDA, CDC, AMA, AAP, IOM) make money by inducing chronic diseases like autism, alzheimers, MS, Lupus, fibramyalgia, ADHD, etc. and then selling worthless, expensive, debilitating drugs on TV. Then they have their bought and paid for media outlets like CBS, NBC, ABC, CNN, PBS, NY Times, LA Times, Chicago tribune, Wallstreet Journal, Time, etc. go after people like Boyd Haley and Andy Wakefield who God forbid actually try to help heal these sick kids!

Hadit – While I agree that the FDA and other government agencies are closely linked to pharma, and they may have conflicts of interest, I really don’t think they “induce” disorders or diseases.

Lisa

It all seems like a matter of convenience to me, pick the doctor that says what you really want to hear and hold their word up as the gospel.

I see people speaking of Wakefield’s book as “The Truth” and denouncing every single other doctor’s research as “probably some pharma backed scam.” How can you take an admittedly scandalous study and hold it up over all the others that you only think could be scandalous?

Again, with the OSR#1 information, had it of been a private organization that did the study and merely suggested that the government or pharma companies had a possible connection to it, the arguments from each side would flip.

It’s not about who is right, or who is wrong.. it’s about who is saying what you want to hear.

Stuart – I quite agree.

Lisa

“A product promoted to parents of children with autism is not a harmless dietary supplement, as claimed, but a toxic unapproved drug”

You left off the end of the sentence:

“…that lacks adequate warnings about potential side effects, including hair loss and abnormalities of the pancreas, the U.S. Food and Drug Administration has warned in a letter to its maker.

True statement. According to the FDA, OSR is both toxic and unapproved. Would the article have been less biased, in your estimate, if the journalist had ignored the substance of the FDA’s warning letter? Is your comment less biased when you ignore that last half of the lead sentence?

Haley’s own tests indicate that OSR is toxic. I understand that “toxic” is a buzzword for those who parrot Jenny McCarthy’s talking points, but the word actually does have a specific meaning, one that you would do well to understand the next time you try to use it in a sentence.

And yes, the article was written by a journalist, and a very thorough and independent one at that.

ANB, you said -

“True statement. According to the FDA, OSR is both toxic and unapproved”

Where exactly did the FDA call OSR “toxic”?

re: Lisa’s comment # 16 – you must have a very low opinion of your commenters if you think that we flip sides depending on who says something, automatically agreeing with certain people and disagreeing with others. Have all my thoughtful carefully written comments and links simply bounced off of you like a tennis ball hitting a wall?

Twyla – Stuart’s comment was not personal, and obviously there are individuals like yourself who dig through evidence and go through a difficult and time-consuming process of research.

But my personal experience, at least, is that a great many people make decisions on the basis of a combination of media/blog headlines and conversations with friends. For those individuals, of whom there are many, decision-making can be as simple as X doctor or spokesperson says it’s true, and so do my friends, so it must be true.

Surely you’ve seen this phenomenon in action too!

Lisa

Lisa, the Chicago Tribune was not the first to publicly question the manner in which Prof. Haley was representing OSR and marketing it for consumption by autistic children. In August 2008, I published three extensively-documented articles on the subject on Neurodiversity Weblog:

A Fine White Powder (August 1, 2008)
The Industrial Treatment (August 8, 2008)
An Inquiry Emerges (August 14, 2008)

These articles served as a basis for Ms. Tsouderos’ subsequent investigation, and were cited in her original article on the subject.

We give OSR to one of two sons with autism as a part of a complete biomedical regimen specific to his symptoms and issues. Of course it is not “FDA approved” this is a toothless label anyway enough money and lobbyists buys you this label if you are a pharmaceutical company. There are many “FDA Approved” things that I would never give my children or put in my own body for that matter. It is all about education and understanding and recognizing there is not a ‘one-size-fits-all’ treatment for anyone.

Here is an eloquent letter to the Chicago Tribune from two parents explaining why they cancelled their subscription after one of Ms. Tsouderos’s articles:
http://injectingsense.blogspot.com/2010/01/open-letter-to-trib.html

Here is an article which includes a more extended excerpt of Dr. Martha Herbert’s comment on how the extensive information she provided to Trine Tsouderos was mostly ignored, except for one small out-of-context quote which basically provided a distorted and very incomplete picture of what she had conveyed to this journalist on a mission to discredit biomedical treatments:
http://www.ageofautism.com/2009/11/cherry-picking-science-chicago-tribunes-shotgun-journalism-strikes-with-another-shoddy-hit-piece.html

P.S. The above links are not directly related to these latest articles on OSR, but help explain why I have absolutely no confidence in Trine Tsouderos as a journalist.

She should have stuck with writing about cupcakes.

Trine’s stories are fresh. Yours grew stale long ago.

“Where exactly did the FDA call OSR “toxic”?”

This paragraph makes it clear that OSR is toxic:

However, animal studies that you conducted found various side effects to be associated with OSR#1 use, including, but not limited to, soiling of the anogenital area, alopecia on the lower trunk, back and legs, a dark substance on lower trunk and anogenital area, abnormalities of the pancreas, and lymphoid hyperplasia. Based on these animal studies and side effects known to be associated with chelating products that have a similar mechanism of action to OSR#1, we believe the use of your product has the potential to cause side effects, and the before-mentioned website statements falsely assert that the product does not have the potential to cause side effects.

It’s possible to infer a characteristic without the use of a label. For instance, if someone says “Mr. Jones has an aversion to truthtelling”, it is clear that Mr. Smith is a liar. When the FDA points out that Haley’s rebranded industrial waste treatment chemical causes “alopecia on the lower trunk, back and legs, a dark substance on lower trunk and anogenital area, abnormalities of the pancreas, and lymphoid hyperplasia”, it is clear that Haley’s product is toxic.

ANB, that paragraph says that there are could be potential side effects. And I am willing to bet that you don’t know what the descriptions of those conditions mean without going to look them up.

Regardless, if we said that any substance that can have side effects is “toxic” then we would not have any drugs or supplements of any kind. Do you know that acetaminophen does to your liver if you take too much?

Ever hear the phrase that “the dose makes the poison”?

If the FDA truly thought (and had evidence) that OSR was completely “toxic” and and harmful at every dose, they would have pulled it off of the market immediately.

The letter is very clear that Haley’s own safety testing, as slipshod as it was, showed toxic effects from his industrial waste chelating agent.

Glad you’re admitting that dose makes the poison. I guess you’re with formaldehyde in vaccines?

“If the FDA truly thought (and had evidence) that OSR was completely “toxic” and and harmful at every dose, they would have pulled it off of the market immediately.”

Who said that they said this?

Post number and direct quote please.

ANB, if you want to believe that the letter from the FDA was “very clear” that the existing research in animals “showed toxic effects” in what they called a ” industrial waste chelating agent”, well you are certainly entitled to your version of reality.

Say hi to the pink elephants for me.

Dedj – I said the text that you are quoting – I did not say that the FDA said that that. The point I was making was that if the FDA had made a final decision that OSR was toxic and posed an immediate health risk, they would be taking more aggressive action to remove the product from the market immediately.

Your interpretation of the FDA’s letter is based on wishful thinking, so I will give you points for consistency. The FDA noted that Haley’s own safety testing of the industrial waste chelating agent, which was developed at the University of Kentucky, shows evidence of toxicity. Furthermore, food supplements must be, uh, edible, and there is no evidence that Haley’s rebranded industrial waste chelating agent is safe for human consumption.

This isn’t the first to be questioned about marketing and not revealing contents. From what I have read, the chemical being sold as OSR#1 is part of a family of chelators originally developed for industrial purposes, according to a U.S. patent issued in 2003 and assigned to the University of Kentucky Research Foundation. A university spokesman said Haley’s company has licensing rights to that patent, which discusses ways to use the compound to remove heavy metals from soil and acid mine drainage.

The product itself may not be marketed as a chelator, it may also have some natural products in it, but it also has that chemical in it. It’s not a matter of false advertising so much as it is not telling the consumer you’re giving your child a chemical that does have side effects. In a world where everyone wants to know the contents of everything, this would also apply to Haley and if it wasn’t for those watch dogs (gals), parents would be subjected to a very unsafe market targeted at autism, which they already are to begin with.

ANB,

Repeating your statements does not make them true. Although I noted you went from calling it “toxic” to “shows evidence of toxicity”. You are getting closer to what the FDA letter actually said, which is a good thing.

Sandy-2000,

I would ask you to consider the source of the information that you are citing. Do you think it would be unbiased in this case? Or for that matter in any case dealing with the biomed side of autism? Would this normally be where you would get accurate information about chemistry or about how a supplement/drug would function inside a person’s body?

For myself, I am much more likely to believe information that is published by reputable medical sources such as the CDC, NIH, WebMD, or other such places. Especially when it is not possible to fact check the basic information myself from the original source.

Since there is no reputable medical source in this matter than is calling the chemical a chelator and I am not chemist enough myself to make my own determination about whether it is one, my opinion is that it is best to wait for the FDA to make a determination and then judge based on that information.

But maybe that is just me.

“Dedj – I said the text that you are quoting – I did not say that the FDA said that that.”

I never said that you did say they said that. I clearly did not say that, nor did I imply it.

I did have a list of points for you, but I really do not think you have learnt anything from anyone over the past year or so.

As such, I must withdraw from this conversation.

I would happily continue it with anyone else, just not with you. I would advise anyone else to do the same.

Dedj,

Just a suggestion, before you get on your high horse and ride back into the sunset, you might want to take a minute to review the comments and what I replied to.

Lets make this simple, I said –

“If the FDA truly thought (and had evidence) that OSR was completely “toxic” and and harmful at every dose, they would have pulled it off of the market immediately.”

You replied –

“Who said that they said this? Post number and direct quote please.”

Notice the “they” in that sentence could easily be taken to mean the FDA, especially since the only entity or party in my statement was the FDA. I replied -

“I said the text that you are quoting – I did not say that the FDA said that that. ”

To which you got up on your high horse and replied –

“I never said that you did say they said that. I clearly did not say that, nor did I imply it.”

Clearly, you not only implied it but you said it as well. The question then becomes whether you meant to say what you do say, and only you can answer that.

But, as always, it is a please to be insulted by you.

MJ, I direct you to Kathleen Seidel’s exhaustive investigation of Haley’s industrial waste chelating chemical:

http://neurodiversity.com/weblog/article/168

Seidel’s sources are well referenced.

… perhaps I’m cutting it a bit fine, but while you’re right that Haley HAS made a career of connecting mercury and autism he has NOT said that this particular product does anything at all relative to mercury OR autism.

Unless you count his 2007 lecture at AutOne, where he explained his “new chelator concept” and favorably compared it to DMSA — an FDA-approved drug for the treatment of lead poisoning. DMSA, of course, is a favorite of the autism bio-med crowd.

But other than his AutOne lecture, his listserv comments and other communications, you are right. I’m sure Dr. Haley would be appalled to know that some parents are sprinkling an industrial waste chelating agent on their disabled kids’ Corn Flakes® with the intent of treating their autism.

MJ thanks for worrying about my sources however, I don’t think it’s a matter of biased or unbiased just due to it being related to biomed. Nobody likes to hear this sort of news regardless if you use biomeds or not. Fact is, many products for many things are targeted towards many different people for many different reasons, not just biomed and autism. There just happens to be a market for autism-related products. If there wasn’t safety regulations and standards, many people could be potentially harmed. What would happen if a child ate the whole bottle and the parent figured no big deal, you cant get sick off of natural products….. you can get an overdose from many vitamins.
I am glad this was exposed and would be glad no matter what the product was.

I hope Boyd Haley has the good sense not to tell parents that children who take OSR show an increased level of mercury in their urine. Boy, that wouldn’t look very good at all, would it?

Here is an article in which Dr. Boyd Haley tells his side of the story:
http://www.kentucky.com/2010/07/12/1345487/dietary-supplement-safe-for-right.html#ixzz0tWIgctKB

An excerpt:

“The testers were forcing 1,000 to 5,000 times the recommended level for humans into these animals, trying to kill them — without success. This means that OSR#1 is considerably less toxic than many commonly used supplemental compounds on the market today.

“For example, a 220-pound and 110-pound person would have to take 5,000 or 2,500 capsules a day, respectively, to reach the level that may have caused diarrhea.

“We recommend 1 capsule a day, which is 5,000 times below the level in this example.

“Therefore, any comments implying danger in taking OSR#1 do not reflect a concern I would agree with. We are presenting this in our response to the FDA.”

What exactly is OSR supposed to “supplement”?

OSR is a synthetic chemical and not found in any food. A supplement, by definition, is something which adds to what we already have in our body or intake.

Mr. Haley’s explanation that his synthetic molecule has subunits which are found in some foods is weak at best. There is little chance that the FDA (or any reasonable chemist) would accept that logic.

Can we say this is toxic? No. Can we say it is safe? No.

Who here can provide evidence that OSR #1 is safe? Please, supply a citation or a website. Where is the safety study?

The chemical Mr. Haley has produced is a drug. Plain and simple. It is not a supplement. Mr. Haley avoided doing proper safety testing.

“There are no claims of chelation; in fact, the site specifically says that OSR1 is NOT a chelator.”

Lisa,

this may have been addressed already, but CTI science has *not* stated that OSR is *not* a chelator.

“There is an internet rumor that OSR#1® is an Industrial Chelator. Is this true?

No. OSR#1® as produced by CTI Science is not now and has never been marketed or tested as an environmental or industrial chelator. Nor has OSR#1® been tested in humans as a chelator by CTI Science, and no claims of chelation treatment use are made by CTI Science.”

They state it is not an *industrial* chelator. They state that it has not been *tested* as a chelator by CTI Science.

Mr. Haley’s company was originally called “Chelator Technologies”.

The chemical used is a chelator. The inventors of the chemical have published on it’s use as a soil chelator.

“The same can be said of Wakefield. While he has, in fact, said many things connecting the MMR and autism, the controversial British study did not come to any specific conclusions on the subject. ”

No, but in his press conference Mr. Wakefield made it very clear that he thought that there was sufficient evidence to stop using the combined MMR shot.

He hides behind the paper. Who knows which of those comments were forced upon him by coauthors, editors and referees?

The fact is he made public comments implicating the MMR. He did not have sufficient evidence to make his recommendation and he made it anyway. He can’t hide now behind the fact that he didn’t have the evidence.

““For example, a 220-pound and 110-pound person would have to take 5,000 or 2,500 capsules a day, respectively, to reach the level that may have caused diarrhea. ”

So, the dose makes the poison?

Or is there a different rule for when mercury is considered?

Dose makes the poison, unless you’re talking about formaldehyde, aluminum salts, trace amounts of mercury, or anti-freeze which was never in vaccines to begin with.

ANB, yes dose makes the poison, but studies have shown that incredibly small amounts of mercury are toxic. And no studies have demonstrated what level of aluminum can safely be injected into a baby.

Sullivan, Dr. Wakefield isn’t hiding. He is out speaking and giving interviews, and has just written a book as well as articles for Autism File magazine. He makes his views quite clear.

At the time of the Lancet paper, he said that an association between the MMR and autism had not been proven, but that more research was needed, and that in the meantime it might be prudent to give separate vaccines for Measles, Mumps, and Rubella. There is nothing devious about that — quite sensible and straightforward.

Which studies show that trace amounts of thimerosal in vaccines are causing autism or other developmental problems?

I can’t say anything about OSR. I don’t know what it is. What I do know is that Boyd Haley is one of the most knowledgeable people I know when it comes to the field of chemistry. I even venture to say that the FDA would be hard pressed to find as capable a man in their midth. As to trust in what the FDA recommends there are many questions in my mind. The one that bothers me the most is there lack of action when it comes to recommended doses of Vitamin D; instead of 400IU it should be 5000IU per day. If I had trusted the current recommendation I would still be very low. I got my levels tested in spite of the fact that I was exposing my body to plenty of sunshine and took 1000 IU to boot. I thought I should have been in fine shape. There went my trust. One more thing Vitamin D deficiency also goes with autism.

One more thing Vitamin D deficiency also goes with autism.

What does that mean?

“Sullivan, Dr. Wakefield isn’t hiding. He is out speaking and giving interviews, and has just written a book as well as articles for Autism File magazine. He makes his views quite clear.”

He hides behind his paper. As in, he points to the paper and says, “See, I didn’t say MMR causes autism”.

It is disingenuous to the point of being a lie. When he gave his press conference he claimed that the combined shot was unsafe and that single vaccines should be used.

In other words–he claimed that there was reasonable evidence that the MMR causes autism.

He is constantly giving out partial truths to make his story. He should just be honest and admit he made a mistake. He can’t repair the damage he’s done but he can slow the damage that he is still causing.

“At the time of the Lancet paper, he said that an association between the MMR and autism had not been proven, but that more research was needed, and that in the meantime it might be prudent to give separate vaccines for Measles, Mumps, and Rubella. There is nothing devious about that — quite sensible and straightforward.”

Thus implying that the data may be indicative of a reason for it to be prudent to give the seperate vaccines, when , in fact, it did no such thing.

This is exactly what he was charged with.

Please keep up to date and relevant, correcting you on basic elements of the discussion has become tiresome.

Sullivan, he is being honest, and Dedj, my statements were and are correct.

Bill, that “one death” from chelation was because the wrong chelator was given. It was a medical error. There are two types of EDTA — one removes calcium. He gave this kind in an IV push to a young child — a terrible mistake.

Regarding mercury, environmental mercury has increased a lot in the past few decades. See
http://e360.yale.edu/content/digest.msp?id=1860
“Mercury levels in the Pacific Ocean have risen by 30 percent in the past 20 years and are expected to increase by 50 percent in the next few decades as emissions from power plants and other industrial sources rise, according to a new study…”

Also see
http://www.ane.pl/showarticle.php?art=7021

Sorting out the spinning of autism: heavy metals and the question of incidence

DeSoto M.C.*, Hitlan R.T.
Department of Psychology, University of Northern Iowa, Cedar Falls, Iowa, USA

Abstract. The reasons for the rise in autism prevalence are a subject of heated professional debate. Featuring a critical appraisal of some research used to question whether rising levels of autism are related to environmental exposure to toxins (Soden et al. 2007, Barbaresi et al. 2009, Thompson et al. 2007) we aim to evaluate the actual state of scientific knowledge. In addition, we surveyed the empirical research on the topic of autism and heavy metal toxins. In our opinion empirical investigations are finding support for a link with heavy metal toxins. The various causes that have led to the increase in autism diagnosis are likely multi-faceted, and understanding the causes is one of the most important health topics today. We argue that scientific research does not support rejecting the link between the neurodevelopmental disorder of autism and toxic exposures.

That “one death” from chelation was because the wrong chelator was given. It was a medical error.

Twyla, you’re missing the big picture. Tariq was referred to Kerry by Anju Usman, the darling of the bio-med movement. She said the boy had aluminum poisoning (no real evidence for that, BTW). Why did Usman send an autistic boy to an ENT?

Kerry tested Tariq for lead poisoning, and found blood lead levels that did not indicate chelation.

Kerry did not use the wrong drug, because there was no right drug for a 5-year-old boy whose blood lead levels did not indicate the need for chelation.

Why did ARI admit Kerry to the hallowed halls of DAN! after he killed Tariq?

No, I’m not missing the big picture.

As summarized by Terri Mauro:
http://specialchildren.about.com/b/2006/01/18/wrong-drug-caused-chelation-therapy-death.htm :

Wrong drug caused chelation therapy death

By Terri Mauro, About.com Guide to Special Children

Wednesday January 18, 2006

“More on the story of the 5-year-old autistic boy who died during chelation therapy last August: A chelation specialist working for the Centers for Disease Control and Prevention has determined that the boy died because the doctor administered the wrong chelation agent. ‘It’s a case of look-alike/sound-alike medications,”’said Dr. Mary Jean Brown, chief of the CDC’s Lead Poisoning Prevention Branch. ‘The child was given Disodium EDTA instead of Calcium Disodium EDTA. The generic names are Versinate and Endrate. They sound alike. They’re clear and colorless and odorless. They were mixed up.’ Both EDTAs are synthetic amino acids designed to pull heavy metals from the blood. But because Disodium EDTA — the one that is believed to have been given to young Abubakar Tariq Nadama, causing his death — removes calcium from the blood, it can cause heart failure. Calcium Disodium EDTA does not remove calcium from the blood, and is the version properly used for chelation therapy.”

Also see Scott Shoemaker’s story here:
h t t p : / / w w w .ageofautism.com/2007/07/chelation-and-t.html

Dr. Bernard Rimland’s statement about this case:
h t t p : / / w w w .autism.com/pro_chelationsafety.asp

Tariq’s mother said that her son showed remarkable improvement after the first few chelation treatments. If only the treatment had continued in the right way instead of this tragic error occurring.

Usually chelation for children with autism isn’t done by IV; more commonly it is done orally, transdermally, or by suppository. When given IV chelation it is not usually by IV push, which is an even faster mode of delivery, and was used by Tariq’s doctor.

Certainly, of all the biomedical/DAN! treatments, chelation is one of those that most needs to be monitored closely by a competent experienced physician.

But the “big picture” is that some people are adversely affected by mercury toxicity and benefit from chelation.

Here is a quote from Dr. Martha Herbert regarding chelation:
“So let me clarify one more time: my position on chelation is a consequence of science. There is no doubt that it serves to reduce the body burden of heavy metals. But although there are numerous anecdotal reports, we have no sound science yet to assess whether, how or in what ways the reduction of those metals leads to an improvement of children with Autism Spectrum Disorders. I support such research. Secondarily, like all forms of treatment, chelation can be mishandled by practitioners; it carries some intrinsic risk for which there are protective measures that can be taken (and that need to be studied); mishandling this treatment can create extra risk. I support research to determine if there are optimal chelation strategies that minimize risk and maximize any potential benefit. There is risk for many procedures and medications in medicine, and this is balanced against benefit and need.

“It is also the case that physicians use treatments based on judgment in cases of serious need. That is commonplace. Obviously there are good and bad doctors but it is not only bad doctors who do whatever they can to help patients in need. Good doctors are often good precisely because they do that skillfully.

“There are always good doctors, bad doctors, successes, failures and mistakes. That is not a news story. The CENTRAL conclusion to be drawn from observing parents searching far and wide for treatments for their ASD children—and reporting successes as well as failures and catastrophes—is that much more attention must be focused by mainstream medicine and federal and private funding on the medical crisis faced by so many of these children.”
h t t p : / / w w w .ageofautism.com/2009/11/cherry-picking-science-chicago-tribunes-shotgun-journalism-strikes-with-another-shoddy-hit-piece.html

ANB, are you also concerned about deaths due to Risperdal, as well as diabetes, strokes, and boys growing breasts — also known side effects of Risperdal? Or is your concern limited to situations where you feel you can find fault with DAN! doctors?

Kerry didn’t even stock Calcium Disodium EDTA in his office. Why did Usman send Tariq to the wrong doctor? Why did ARI make Kerry a DAN! provider after his killed Tariq?

Everything has risk. An ethical physician measures the benefit, and determines if the risk is worth it. Since there is no credible evidence that chelation is effective for the treatment of autism, the risk is not worth it.

You bring up a good point, ANB, which is that the list of DAN! practitioners is simply a list of practitioners who have taken a brief course and expressed a commitment to the DAN! treatment philosophy and to attending a DAN!/ARI seminar every two years. This list of DAN! clinicians on the Autism Research Institute (ARI) web site has the following disclaimer:

Defeat Autism Now! U.S. Clinicians

DISCLAIMER — PLEASE READ

The following are practitioners who have asked to be listed as providing Defeat Autism Now!®-based interventions for patients with autism. Most are physicians, others are licensed health-care professionals in related fields.

ARI has no means of certifying the competence nor quality of practice of any practitioner. The lists are provided as a community service. The Autism Research Institute disclaims and does not endorse or support any individual or entity listed; makes no representations, warranties, guarantees or promises on behalf of or for those listed, and assumes no liability nor responsibility for any service or product provided. ARI does not ‘certify’ practitioners or guarantee competence, skill, knowledge, or experience.

***
At this time, I don’t see Dr. Roy Kerry on the list.

Not every doctor who purports to follow DAN! is competent, just like not every cardiologist or pediatrician is competent. Basically, this list is presented in the spirit of “buyer beware”. As with choosing any doctor, parents need to consult with other parents who have had experience with a doctor, consult with other practitioners who know that doctor, and use their own common sense, knowledge, and intuition when interviewing prospective doctors and/or treating with those doctors.

According to the June/July issue of Spectrum magazine, ARI has asked Kenneth Bock M.D. to begin developing a new training and certification program for doctors who practice an integrative approach to autism. Jane Johnson, the director of ARI, said that the idea of a certification process has been discussed at ARI for some time, but that ARI is not a physician organization, and “over time we’ve realized that what’s really needed is an organization run by and for clinicians.” ARI is very supportive of the new organization, to be called the International College for Excellence in Pediatric Therapeutics (InCEPT). But InCEPT will be a completely independent entity.

According to Spectrum magazine, the other two current board members are:
• Doreen Granpeesheh, Ph.D., BCBA-D – founder and executive director of the Center for Autism and Related Disorders (CARD), and
• Robert L. Hendren, D.O. – Director of child and adolescent psychiatry at UCSF (and former executive director of the MIND Institute).

From the Spectrum article, “Paging Dr. Bock”:

“The ultimate goal of InCEPT is to eradicate the variability of care among providers offering biomedical treatment and ensure a high caliber of care on a consistent basis…

“The immediate goal for the group is to build the traditional curriculum…

“The three board members of InCEPT are well aware of the dearth of research on biomedical treatments. Research will, in fact, be another part of InCEPT’s agenda…

“In time, InCEPT will build a clinical research database. ‘We will have a wealth of information because of our InCEPT doctors,’ says Bock. ‘Hopefully we will have the most sophisticated database in the world.’ Johnson says that the benefit of collecting data on biomedically treated children is finding the right fit for each child’s specialized needs. ‘We know there isn’t a single treatment that works for all children – we need to better understand which individuals are likely to respond to a given treatment.’”

These are exciting developments. I hope this article becomes available on the internet soon. I look forward to seeing what comes of this organization and its work.

At this time, I don’t see Dr. Roy Kerry on the list.

Kerry’s name was pulled off the list last fall, one day after the Chicago Tribune called ARI to ask why his name was on the list.

That’s the difference between DAN! and legitimate professional organizations. You don’t get to place FAAP after your name after you kill a kid.

Since autism is not caused by heavy metal exposure, there is no “correct” chelator.

Had Tariq’s parents been given the correct information, their child would still be alive.

Some autism is caused by heavy metal exposure. Some autism is cured by chelation. That is a fact.

I bet there are pediatricians who have had patients die from Risperdal or Ritalin or vaccine reactions but who still have FAAP after their names.

Nevertheless, as explained in my previous comment and the ARI disclaimer, the DAN! list is basically a list of the addresses and telephone numbers of all the doctors who expressed an interest, signed up, and took short training. DAN! and ARI are not and do not pretend to be organizations that provide professional certification. This is an area of concern, hence the development of a physician organization is in progress.

Twyla, how do you know that’s a fact? Because Jenny McCarthy says so? Where is the body of medical literature that points to chelation being a cure for autism? Or anything being a “cure” for that matter? Why are the symptoms of hg poisoning distinct from autism?

Sullivan is right – there is no correct chelator for autism, because heavy metal exposure is not caused by exposure to heavy metals. Tariq’s blood lead levels were not high enough to warrant treatment, but Kerry chelated the boy anyway. Instead of just focusing on risk, talk about risk v. benefit. Everything has risk, but we balance risk against benefit. Driving your kid to the doctor’s office carries a risk but we do it anyway.

What was the benefit of chelating Tariq for a problem he didn’t even have?

Yes, I agree, the important thing to consider with any medical treatment is risk vs. benefit.

Tariq’s mom said that he showed gains from chelation. If the chelation had been handled better, it seems likely that he would have benefited. Levels in the blood only show recent mercury exposure, not what has been absorbed by organs such as the brain and kidneys.

Chelation is routinely used for lead exposure, and FDA approved. Apparently the paint companies don’t have such strong financial influence on the FDA, CDC, and media as do the pharma companies.

And yes there is not a body of medical studies on chelation, mercury, and autism. Instead millions of dollars are spent on studying genes and the brain, with little in the way of results so far. Our medical establishment does not want to really study the causal relationship between mercury and autism.

But there is a lot of evidence from parents and practitioners. Not everyone benefits from chelation — either because mercury is not the problem, or because mercury has done damage that is difficult to reverse, or because there are multiple problems, or because that particular child’s chemistry is not conducive to releasing mercury. But 74% of parents surveyed by ARI found chelation benefited their child. Yes, this is not an exact number, and there is selection bias and placebo effect. But this is a higher favorable percentage than any other of the many diverse treatments rated.
http://www.autism.com/fam_ratingsbehaviorbiomedical.asp

I have seen Scott Shoemaker’s before-and-after videos and heard him tell his story (see the link in my prior comment). I have heard/read many such stories, including that of Lyn Redwood. I have read the accounts of Dr. Amy Homes and other practitioners. I am just a parent and not doing this subject justice, but there clearly is evidence that mercury can cause autism and that removal of mercury can greatly ameliorate some cases, and even result in recovery in some, and total cure in a few.

Like Dr. Herbert says, this is a treatment that carries some risk and needs much more study.

There are a whole lot of symptoms of mercury poisoning, as shown in historical accidents, that are similar to characteristics of autism. And, males tend to be adversely affected by mercury worse than females.
h t t p : / / w w w .autism.com/fam_mercury.asp

For more articles on mercury and autism, see
h t t p : / / w w w .autism.com/search/search.asp?zoom_sort=0&zoom_query=mercury

And read the book by Dan Olmsted and Mark Blaxill “The Age of Autism: Mercury, Medicine, and a Man-made Epidemic” to be released on Sept. 14, available for pre-order now.
h t t p : / / w w w .safeminds.org/store/amazon-store.html

One of the issues with anecdotal evidence (parents found it benefitted their child) is that we have no way to evaluate what that means. Possibilities include -

after a chelation session we immediately saw measurable improvements in behavior and/or skills;

over a period of weeks or months, while chelating and doing other therapies, we saw measurable improvements in behavior and/or skills;

over a period of weeks, months or years, while chelating and doing other therapies, we believe we saw improvements but they were so subtle they couldn’t be measured

While the first of these possibilities is obviously terrific, the second two would be questionable. Was it the chelation that made the difference? Were there real changes or were they simply perceived/hoped for?

I understand that it would be ideal for there to be large scale government funded studies focused on questions related to vaccines, etc. But surely there’s something between “my story of recovery”-style anecdotes and multi-million-dollar studies?

Lisa

“But 74% of parents surveyed by ARI found believed chelation benefited their child.

“Some autism is caused by heavy metal exposure. Some autism is cured by chelation. That is a fact.”

That is an assertion.

Autism and mercury poisoning do not look the same. The symptoms are not the same.

There are zero papers showing chelation as a cure for autism. That is not an assertion, that is a fact.

How can 74% of parents find that chelation helped their child when fewer than 10% have tried it? There is a study by the IAN project (if I recall correctly) showing that. Katie Wright has made comments that fewer than 5% have tried it.

“ut surely there’s something between “my story of recovery”-style anecdotes and multi-million-dollar studies?”

There are also the “my child was harmed by chelation” stories. Anecdotal, sure. There is a story in Evidence of Harm about a child who had epilepsy onset with chelation and the parents refused to go on. There is a story from one of the autism omnibus test-case hearings where the child in question regressed badly with chelation.

There are numerous stories in yahoo groups of children suffering setbacks from chelation.

Amy Holmes–who did the infamous “baby haircut’ study–told the world about the wonders of chelation. How her child was “speaking in sentences”.

That was in the year 2000.

In the year 2007, he was using a letterboard to communicate.

http://autismdiva.blogspot.com/2007/08/dr-amy-holmes-and-mikes-story.html

It appears that not all stories of “recovery” and “benefit” are real.

Sullivan, the survey did not say that 74% of all parents found that chelation helped their kids. 74% of parents who responded to the question on whether chelation made their kid better, worse, or had no effect responded “got better”. Yes, this is rough, just a survey, not investigated/confirmed, and yes as I said before there may be placebo effect and maybe those who believe in biomedical are more likely to respond. But still, placebo and selection issues apply to the other treatments, too. And the positive rating on chelation is so much higher than for other treatments.

Again, I am not saying that chelation is all roses. Yes, for some children chelation has a negative effect. And it has risks. As I already quoted, Dr. Martha Herbert said:
“There is no doubt that it serves to reduce the body burden of heavy metals. But although there are numerous anecdotal reports, we have no sound science yet to assess whether, how or in what ways the reduction of those metals leads to an improvement of children with Autism Spectrum Disorders. I support such research. Secondarily, like all forms of treatment, chelation can be mishandled by practitioners; it carries some intrinsic risk for which there are protective measures that can be taken (and that need to be studied); mishandling this treatment can create extra risk. I support research to determine if there are optimal chelation strategies that minimize risk and maximize any potential benefit. There is risk for many procedures and medications in medicine, and this is balanced against benefit and need.”

Again, I am just a parent and not the best qualified person to write about this. In Dr. Bryan Jepson’s book “Changin the Course of Autism” there is a chapter on detoxification which goes into specific information on various chelators, the state of current science, and his experience as a clinician. He concludes, “My experience and that of many other physicians treating autistic children is that children with autism improve with chelation therapy, and that it’s generally safe and well tolerated IF done under appropriate medical supervision with mineral supplementation and monitoring of potential side effects. Chelation is promising, but needs to be further explored with quality research.” [emphasis mine]

It astounds me how often stories of vaccine reactions or recovery with biomedical treatments are simply discounted as “anecdotal” and “coincidence” because not yet thoroughly studied in peer reviewed published science. The attitude is constantly expressed that we don’t really know anything. Yes, in an ultimate sense, we don’t know anything, except maybe “cogito ergo sum”. Yes, much more research is urgently needed.

But this research does not spring fully formed out of thin air. Science begins with random evidence including observations, upon which further hypotheses and study should be based.

If reports of milk maids who had not gotten small pox because of having come down with cow pox were simply dismissed and ignored as anecdotal, coincidental, and “they all had small pox but just weren’t diagnosed”, the small pox vaccine would never have been developed.

Definition of “fact” in Webster’s dictionary: “something that has actual existence; an actual occurrance or event”. There’s nothing in the definition about peer reviewed scientific journals. Yes, formal peer reviewed science is extremely important, but there’s nothing that says we have to totally hand over our perceptions of reality to scientists, especially when pharma influence over what gets published has been demonstrated.

Was George Washington the first president of the United States? Yes, I believe he was, even though no peer reviewed scientific journal articles have demonstrated this. “Facts” can be demonstrated by multiple types of evidence. But by the definitions used by many on the net, all recorded history is simply “anecdotal”. Yes, all recorded history is subject to disagreement, further research, revision, and differing viewpoints. But it would be dumb to say, “Well I don’t believe that the Civil War occurred because all the reports are simply anecdotal.”

Based on my evaluation of Scott Shoemaker’s story, I find it credible. Does this mean that everyone should be chelated? or that chelation benefits everyone? or that all practitioners practice chelation responsibly? or that chelation is risk-free? No.

I have also heard very credible accounts of some children benfiting tremendously from Methyl B-12 injections, a treatment with low risk. I recall seeing one mother (who happened to be a speech therapist) speak in person, with videos showing her little girl as severely autistic on Halloween, but playful and fully conversational by Christmas. Does this mean that everyone benefits from Methyl B-12? Unfortunately, no. But I believe her story does demonstrate that Methyl B-12 made the difference for her daughter.

All of this is very interesting, deserves much more research, and should not simply be dismissed as meaningless because not formally published.

I hope that InCEPT will be able to do good research providing some guidance on what treatments benefit which people and why.

Fortunately, many of the DAN! treatments are very low risk, such as dietary interventions, vitamins, probiotics, and digestive enzymes. These can be tried to see whether a specific child benefits. These are also relatively low cost.

And some other treatments, such as treatment for yeast overgrowth, need physician supervision but are established in medicine; even if not accepted as a treatment for autism, antifungals are accepted as treatment for yeast.

Bottom line: there is a lot of evidence indicating that mercury plays a significant role in autism causation, and that detox of mercury helps many people with autism. Our government agencies and mainstream scientific/medical institutions should be studying this.

So Dr. Herbert admits that chelation is not proven safe and effective for the treatment for autism, yet you are still willing to expose children to the harm. Is that a fair statement?

Nope, that is not a fair statement.

Twyla,

“Sullivan, the survey did not say that 74% of all parents found that chelation helped their kids.”

This is not consistent with your previous statement. Above, you stated, “But 74% of parents surveyed by ARI found chelation benefited their child”

“Was George Washington the first president of the United States? Yes, I believe he was, even though no peer reviewed scientific journal articles have demonstrated this”

What a strange question to pose. The fact of George Washington being the first president of the United States is not a scientific question (unless you consider history and political science to be science). But I’d be willing to bet that there are peer reviewed articles that state he was the first president.

Jeff Bradstreet will tell you that in his anecdotal experience children benefit from chelation. What he won’t tell you, unless he is under oath and being asked very pointed questions, is the stories of children who appear to have been harmed by chelation.

Can you tell me what tests a person can do to insure that his/her child is not harmed by chelation? What could Dr. Bradstreet have done to insure that child didn’t regress?

Without that, there is no informed consent.

Without actual data showing that chelation benefits autistic children there can be no informed consent.

Without an actual basis for the idea that chelation should help autistic children, there can be no informed consent.

My child deserves better than guesswork based on faulty assumptions.

I feel that all children deserve better than that.

“It astounds me how often stories of vaccine reactions or recovery with biomedical treatments are simply discounted as “anecdotal” and “coincidence” because not yet thoroughly studied in peer reviewed published science. ”

It astounds me how many adverse reactions to “biomedical” treatments are ignored or mislabeled as “die off”.

I’ve read stories of children vomiting every day for a month, only to have other parents say, “good, that means that the treatment is working!”. I’ve read of children going through dramatic mood swings.

No one collects those data.

Kathleen Seidel recently reported on the anecdotal accounts of adverse reactions to OSR. Why are those not given the same weight as the anecdotal reports of benefit?

Why is it that parents are convinced their children have a very serious condition–heavy metal poisoning. Then, in a rather mind-boggling move, the parents aren’t referred to those who are trained in treating heavy metal poisoning: toxicologists.

Isn’t that just bizarre? I mean, if your child was diagnosed with a broken bone, you’d seek out a osteopath, wouldn’t you? If your child were diagnosed with cancer, an oncologist. But with supposed “heavy metal” poisoning”, the child is either treated by the parents or by a doctor (or chiropractor or nutritionist…) without formal training or experience in toxicology.

Is it because the tests used to “prove” heavy metal poisoning don’t stand up to real scrutiny? Is it because the treatments applied aren’t consistent with the standards of practice for toxicology?

AutismNewsBeat:

“So Dr. Herbert admits that chelation is not proven safe and effective for the treatment for autism, yet you are still willing to expose children to the harm. Is that a fair statement?”

Let’s take that apart–

1) Dr. Herbert quite clearly states that Chelation is not proven effective.

2) Dr. Herbert quite clearly states that chelation is “generally” safe IF performed under appropriate supervision.

What are the potential pitfalls? What does she consider “appropriate” supervision?

The comment she made that prompted all the above quotes was,

“I’m not defending chelation,” Herbert said in an interview. “I will sue you if you say that.”

Odd that quote is missing in the above statements which attempt to maker her out to be a proponent of chelation. Most readers going through the above comments would probably think that Dr. Herbert was defending chelation.

I don’t know Dr. Herbert’s definition of “appropriate”, but I think that appropriate medical supervision for treating heavy metal intoxication (which is what chelation is) would be that a medical toxicologist be supervising the treatment.

I would also be amazed if Dr. Herbert considered a re-branded chelator, untested in clinical trials, like OSR to be “appropriate” for use on disabled children.

Should someone email her and ask her whether she supports the use of OSR on autistic children? Or should we cherry pick her public comments about chelation and assume that she supports OSR and chelation in general?

Sullivan, you are using two favorite techniques of anti-biomedical-treatment and vaccine-defender bloggers:

1) Splitting hairs: 74% of parents surveyed — o.k. technically I should have said 74% of the parents who responded to that question on the survey. Obviously we don’t know the opinions of those who did not respond. The page I linked to is quite clear.

2) Making issues into all-or-nothing, black-or-white. Those who raise questions about vaccine safety are branded anti-vaccine. Both the highly educated Dr. Martha Herbert and the peon Mom (me) are saying that some people benefit from chelation, that there are risks, that it is a treatment worthy of study. Dr. Herbert objected to the quote used in the Chicago Tribune. She wrote to the reporter Trine Tsouderos:
“I did a rather long interview with the Tribune to explain my thoughts on chelation and additional approaches to solving the health issues connected to autism. The only consequence of my interview is that you use a solitary quote to make me sound contentious and defensive. Is there a reason you chose not to use something I said that would actually illuminate the discussion surrounding chelation and other medical treatments for medical compromises that may exist in these children?”

Teri Aranaga wrote, “The Tribune reporters spent a good deal of effort trying to box Dr. Martha Herbert into all sorts of neat little agenda-driven packages. Dr. Herbert commented to me that it was the most biased interview process she had ever been subjected to.”

This isn’t a matter of simply being pro or against chelation.

And by the way, all that you are saying about “no informed consent” applies to vaccines. Adverse reactions are discounted as “coincidence” instead of being tracked and studied. Longterm cumulative effects of our current are largely unknown.* Parents are generally not advised to consider risks and benefits, to make careful and well informed decisions, nor what susceptibility factors to consider (e.g. family history of auto-immune disorders).

*Except, an ongoing study of macaque monkeys is beginning to shed some light on the combined effects of vaccines.
“In this pilot study, infant macaques receiving the recommended pediatric vaccine regimen from the 1990’s displayed a different pattern of maturational changes in amygdala volume and differences in amygdala-binding of [11C]DPN following the MMR/DTaP/Hib vaccinations between T1 and T2 compared with non-exposed animals. There was also evidence of greater total brain volume in the exposed group prior to these vaccinations suggesting a possible effect of previous vaccinations to which these animals had been exposed.”
http://www.ane.pl/pdf/7020.pdf

If I am understanding Twyla correctly with her “George Washington” comment, I believe she’s saying that we take many things on faith.

G. W. is probably not the best example, since we have a lot of proof available, and all of us can make sense of what we’re looking at (letters, signed documents, etc.).

But I do take the point that “science” is, to a certain degree, faith-based – particularly for those of us without Ph.D.’s in a specific field of research. We are told that gravity relates directly to mass – and we buy it because we don’t have a better explanation, not because we’re able to verify the statement. Same goes for atomic theory (for most of us), or for our understanding of how the kidney functions (again, for most of us).

As regards vaccines, I can’t point to and understand their function in my own or anyone else’s body, but I look at studies and statistics, listen to anecdotal discussion by older adults, and believe that they have had a huge positive impact on the incidence of certain diseases overall. But since I can’t see their actual impact on any given individual, I have no way of knowing whether they are creating a subtle harm.

I have to say that if I saw an apparent, immediate negative outcome from a medication (Joey took an aspirin and threw up five minutes later) I would assume that the medication was the problem. Of course, I could be wrong: Joey could have been sickening for the flu all along.

In the case of aspirin, I can test my theory by giving Joey aspirin another day and carefully monitoring the results. But in the case of vaccines, it’s a one-time event, so there’s no good way to test whether, in an individual case, an apparent reaction is the real deal.

Lisa

“Teri Aranaga wrote, “The Tribune reporters spent a good deal of effort trying to box Dr. Martha Herbert into all sorts of neat little agenda-driven packages. Dr. Herbert commented to me that it was the most biased interview process she had ever been subjected to.”

Teri Aranaga has also written statements which are blatant attacks on an autism parent and completely unfounded.

The Aranaga’s expelled AutismNewsBeat for asking a pertinent question of a speaker.

Ms. Aranaga has a very agenda-driven package of her own. I don’t rely upon her for accurate information.

“In this pilot study, infant macaques receiving the recommended pediatric vaccine regimen from the 1990’s displayed a different pattern of maturational changes in amygdala volume”

Yes, in the pilot study, the brains as a whole and the amygdalas in particular shrank as the monkeys matured–but only for the unvaccinated monkeys.

The fact that Wakefield’s team tried to spin that obvious error into implicating vaccines was an amazing bit of agenda-driven packaging of information.

Twyla, you’ve referenced the paper. Please, would you be so good as to explain why the brains of growing monkeys would shrink over time?

“Adverse reactions are discounted as “coincidence” instead of being tracked and studied.”

No. Adverse events are tracked and compensated by the government.

It would be the opposite of “informed consent” to tell people that vaccines caused an autism epidemic.

“1) Splitting hairs: 74% of parents surveyed — o.k. technically I should have said 74% of the parents who responded to that question on the survey. Obviously we don’t know the opinions of those who did not respond. The page I linked to is quite clear.”

I wasn’t splitting hairs. Your statement was unclear and misleading. I was pointing out that you were making assertions that weren’t even backed up by the survey your quoted.

You appear to be attempting some blame shifting here. When I pointed out your error you also tried blame-shifting with “Sullivan, the survey did not say that 74% of all parents found that chelation helped their kids”. Quite obviously I knew that was the case since it was I who did the correction.

Hi, Lisa -
I’m not so much saying that we take things on faith, as that there are many kinds of evidence besides publication in scientific journals.

Regarding vaccines, there are some kids who have repetitive vaccine reactions that increase in severity until culminating in seizures, autistic regression, and/or other serious cognitive and health issues. I have read accounts like this, which do indicate a repeated effect, evidence towards a causal link. One of the shortcomings of our vaccine program is the lack of research on what types of reactions constitute red flags indicating susceptibility to more serious vaccine injury. I have heard parents say their pediatricians dismissed their kids’ reaction as inconsequential and told them to continue with the standard schedule, even though the initial reactions were not just mild.

“Both the highly educated Dr. Martha Herbert and the peon Mom (me) are saying that some people benefit from chelation, ”

Dr. Herbert does not make that statement in relationship to autism.

“But although there are numerous anecdotal reports, we have no sound science yet to assess whether, how or in what ways the reduction of those metals leads to an improvement of children with Autism Spectrum Disorders.”

We have no sound science yet to asses *whether*…

Dr. Herbert’s statements do not state that some people benefit. Clearly they do not. She leaves the possibility open, but she is not stating that “some people benefit”.

You are misrepresenting what she said.

I’m not so much saying that we take things on faith, as that there are many kinds of evidence besides publication in scientific journals.

That’s right, Twyla – there are different types of evidence. In fact, there is evidence for just about anything you can imagine, including Santa Claus. Children sing songs about Santa. We have illustrations of him. When you address a letter to “Santa at the North Pole”, the post office doesn’t bounce it back as undeliverable.

There is also “evidence” for creationism, Big Foot, the Loch Ness Monster, the Bermuda Triangle, and the lost City of Atlantis.

So what’s your point? Can we agree that some evidence is stronger than other evidence? Can we agree that anecdotal evidence, by itself, is unreliable?

The Aranaga’s expelled AutismNewsBeat for asking a pertinent question of a speaker.

Teri Arranga also expelled Trine Tsouderos from AutOne last year. This year she expelled a Chicago documentary filmmaker, and a state health department representative. None of those individuals did anything wrong, unless you believe in thought crimes.

Hi, folks. Just want to remind everyone to keep the personal stuff to minimum. I know there’s a lot of history among the folks on this thread, but please do remember that we do get newbies on this site as well. Hopefully they’ll be able to make sense of the conversations and feel they can take part.

Thanks,

Lisa

Lisa, can you please clarify who is “getting personal”?

Thanks.

It appears that OSR is being removed from the market until approval as a drug can be obtained.

Approval as a chelating drug, no doubt. Glad Haley can finally admit what so many others still can’t bring themselves to say.

I have aspergers and chronic fatiuge. This is the one supplement i take that has helped get me back from a 9 month period of being alomost completely bedbound.

As soon as I run out of this OSR I will probably end up stuck in bed again being barely able to shop for groceries or even shower on days my energy is low.

I hope the drug companies or whoever attacked this vitamin feels real dang good that I probably just got a virtual death sentence

“I have aspergers and chronic fatiuge. This is the one supplement i take that has helped get me back from a 9 month period of being alomost completely bedbound.

As soon as I run out of this OSR I will probably end up stuck in bed again being barely able to shop for groceries or even shower on days my energy is low.

I hope the drug companies or whoever attacked this vitamin feels real dang good that I probably just got a virtual death sentence”

you bet they do.

(btw – if you run out of OSR, you can always use other mercury chelators – DMPS, DMSA – just be careful using it – the safest way of usage seems to be the “Cutler protocol” [you can google it - it's basically taking DMPS/DMSA in small frequent doses - to keep steady level of them in body and thus prevent redistribution

but i don't know how well DMPS/DMSA perform compared to OSR - i haven't read much about OSR in terms of people's practical experience

other thing - if you have still "silver" - amalgam [=50% mercury] fillings in your mouth, it is important to get them out to prevent any more mercury intoxication from them)

Well, I am highly disappointed in the removal of this product. I have spent many months researching ways to detox my family from heavy metals and other environmental factors.
I am a whole foods nutritionist and have found nothing in this product that is toxic at all. Cranberries and antioxidents?
Clearly the FDA is looking for another way to make money and most likely when this product does get approved, it will be sold at a much higher price through a pharmaceutical company and not available for everyone.
It is kind of hard to respect the FDA when they only seem to approve products from companies that pay them big money to do so. They do not look out to the best interest of the consumers.
How many FDA approved medications have been pulled from the market after their approval ? Too many to count, yet we have to have FDA approval on something that is natural and non-toxic?
You have to question a government that will evacuate a school when a mercury themometer breaks in a science lab, yet they try to force parents into injecting the same poison into the bloodstreams of our children, allowing them to suffer the ill side effects with no remorse ir accountability.
I think that most parents have their childrens’ best interest in mind and should be able to make their own decisions when it comes to how we care for them.
I for one was one of the nieve when it came to injecting deadly poisons into my young babies. Yet today, I am a strong opposer as I have seen far to often the devastating side affects of far too many and now I am too am trying to rid my family’s bodies of any and all of these deadly toxins. It is absolutely my right to do so and I will continue as it is my body and my family, not the governments.

It is all about money. The FDA is bought and controlled by Pharma. My wife has severe mercury poisioning from 16 amalgam fillings. She was to the point of being bed ridden and had most of her hair fall out. We went thru all kinds of medical test that fincially destroyed us. Not until we left the Pharma controlled system did we find the problem. We tried many of the chelation agents but all made my wife terribly ill. We found the OSR #1 and in 4 months my wife’s mercury levels dropped over 50%. They are still very high but I purchased an extended supply of OSR #1 to continue the fight. We were told she would not survive 2 months without the extensive treatments that were killing her and making Pharma massive money. That was 8 months ago and my wife is doing much better. She had no side effects for OSR #1 when DMPS and DMSO almost killed her. Her hair is growing back as we are battling candida caused by the mercury. For those of you that think the FDA is there for your safety I will pray for you.

Hello: Notice that Tylenol is FDA approved. Did you know it kills 2500 people every year when taken in moderate excess as it rapidly depletes glutathione. Did it ever get pulled from the market….no of course not. The 50% lethal dose of Tylenol is tiny compared to the LD50 of OSR#1. There have never been any recorded deaths from OSR#1 have there. In fact I don’t think there has even been a complaint!! Does anyone know if this compound is available as a water purification capsule?

M.Power
Montreal