Porphyrins, autism and enviromental militia

4 Dec

You know those nature programs where they film sharks in a feeding frenzy? That’s what I’m reminded of when a new test or treatment appears on the radar of the mercury militia. First there’s one lone parent taking a chomp but after a few minutes there’s a whole school of them twisting, turning, biting indiscriminatingly.

Porphyrins are the New Big Thing amongst the mercury militia. Never mind that the sole paper that exists on the subject (pertaining to autism) contradicts the Holy Edicts of DAN! and also fails to note that some forms of chelation affect how Porphyrin’s are measured and further, that the lead author of the study acknowledges the substantial grey areas and unaddressed discrepancies in the paper. Full steam ahead Jeeves and don’t spare the horses.

In a nutshell, these people believe that Porphyrins can be used to give a very accurate measure of how much mercury (or other metals) are in someone’s system. They send their kids wee off to a lab in France to be analysed at €80 a pop. The French test is considered the best as they test for Precoproporphyrin which is supposed to be a specific marker of mercury. Never mind the fact that only one scientist has ever found this association.

So how’s it panning out for the mercury boys and girls? Here’s a series of quotes from the Yahoo ChelatingKids2 Email Group:

A fellow listmate had her son tested twice– once over the summer which showed he had no elevated metals, and one this fall that showed he did indeed have elevated metal levels. She has sent an email to the lab asking about the differing results and has not received a response. I believe she is still trying to contact them.

FWIW, my neighbor’s dad happens to be a porphyrin specialist here in Boston (believe it or not– how many of those are there??). He reviewed lots of info for me– Nataf’s paper, my son’s results that showed very elevated metals across the board– and said he would have rejected the paper for publication had he been asked to review it. He said that fecal, not urine, should be used to measure the porphyrin levels. I sent an email to the lab inquiring about this and also received no response.

It concerns me that if someone does one test and goes on those results, do we know that those are accurate. I hate the idea of implementing treatment on a child based on less than accurate info. It is hard to GET good info I realize on the toxicity issue but just wondering if this is reliable enough to trigger chelating a child etc.

The answer is ‘no’. Here’s another one:

I just received the results of the French porphyrin test for myself and my 7 year old NT daughter, and the results also show severe lead and mercury toxicity. My daughters numbers are worse than my ASD son!

Sadly, this parent was considering chelating her NT daughter anyway even though….

My daughter is terrified of oral capsules and blood draws after seeing what her brother goes through

I’ll bet.

What’s the cut off point when an honest desire to help someone based on love for them and sound science to underpin your decision becomes a dangerous chasing after any sort of unproven treatment no matter what the consequences might be?

The scientist and author Michael Crichton once gave a speech about environmental issues that may as well have applied to the autism/vaccine issue:

We are basing our decisions on speculation, not evidence. Proponents are pressing their views with more PR than scientific data. Indeed, we have allowed the whole issue to be politicized—red vs blue, Republican vs Democrat. This is in my view absurd. Data aren’t political. Data are data. Politics leads you in the direction of a belief. Data, if you follow them, lead you to truth.

Increasingly it seems facts aren’t necessary, because the tenets….are all about belief. It’s about whether you are going to be a sinner, or saved. Whether you are going to be one of the people on the side of salvation, or on the side of doom. Whether you are going to be one of us, or one of them.

That’s sad, worrying, dangerous. And true. When did we start to let PR driven media become more important and carry more weight than scientific fact? When papers scream headlines about the evils of mercury causing autism what is it about the apocalyptic way the story is written that catches attention? We live in a world where we think we see threats at every turn. This is a world where I cannot videotape my kids school plays any more as its considered ‘a security risk’. This is a world that now exists in biblical terms like ‘terror alerts’ and ‘axis of evil’. No one conditioned to this hysteria is going to listen to the scientists simply repeating the fact that no science supports such an assertion. That won’t give us a fix of melodrama – maybe if we portray these scientists as part of a global conspiracy that might quicken our terror-conditioned pulses a bit.

There are people who get their ‘facts’ not from scientists but from people like this man – an American DJ names Don Imus. He is, apparently, an autism advocate. He also seems to be something of a racist bigot.

If I have wishes for Christmas its that we stop listening to hyped-up media merchants like the odious Mr Imus and start listening to actual scientists regarding autism and its causes.

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14 Responses to “Porphyrins, autism and enviromental militia”

  1. Mike Stanton December 4, 2006 at 19:51 #

    So which one of the racists in the vid was Imus?

  2. kristina December 4, 2006 at 20:22 #

    Actual scientists with actual scientific degrees, too….

  3. Ms. Clark December 4, 2006 at 21:46 #

    Imus is the worst kind of fool, one with power. His wife is a ditz who pretends to understand science, too. Scary stuff.

    The first time I heard of him it was from reading the “EoHarm” list where the mercury parents were falling all over themselves excited over the fact that they had gotten Don Imus involved. Kirby went on his show and charmed him with some little-boy cutesy faces. Imus found him charming and scientfically plausible, I guess. Never mind Kirby isn’t a scientist has written and said some really pathetic things about autism, like Asperger’s syndrome is what they used to call idiot savantism.

  4. notmercury December 4, 2006 at 22:50 #

    My God, Imus really is a racist, isn’t he? Not to mention the way he approves of the nice blind black men – plus – they sing!

  5. Ms Clark December 5, 2006 at 03:15 #

    My favorite part of what Imus said was that the “they’re handicapped, they’re black and they’re blind.” Wow, what an observation, handicapped AND blind. I hope the Blind Boys of Alabama decide to avoid Imus in the future.

  6. Ms Clark December 5, 2006 at 03:28 #

    Deirdre, ick. She get’s a comment on thimerosal in there.

  7. mcewen December 5, 2006 at 04:02 #

    I’m a great follower of tarot cards and crystal divination, however I doubt if you could afford my private fees. Cheers

  8. Joseph December 5, 2006 at 16:00 #

    Just racist? The video was very ableist as well in my opinion. No surprises there.

  9. Kathleen Seidel December 5, 2006 at 23:11 #

    I guess I’m late to the party; the video’s been removed from Youtube.

  10. anonimouse December 6, 2006 at 20:33 #

    On a completely unrelated and downright snarky note, I had a nice chat with Keith Richards and he told me that Imus is looking quite old and unwell.

    As to Deidre, my guess is her excitement is due to the fact she’s about to hit the jackpot. Well, as a big a jackpot as one could expect from a syndicated radio talk show host.

  11. Jan December 8, 2006 at 01:48 #

    My son has autism. We treat him in the normal way; education and meds for Epilepsy. However, your attitudes and commentary I find to be insulting and uncaring. These parents LOVE their children. Like all good parents going through Autism with their children, they will do what they feel will work. We can do little else. Think about what you say before you say it. It sets the tone for your life.

    I assume you are a medical student or nurse or somesuch and can comment intelligently on the subject, but your behavior on this site suggests you know very little of the heart.

    I disagree with your acceptance of toxins in vaccine, but you have the right to think it. We have the right to seek any treatment that will cure our kids. Good luck to you and I hope you aren’t dealing with autism firsthand, and I pray you never have to.

  12. Kev December 8, 2006 at 06:10 #

    _”These parents LOVE their children. Like all good parents going through Autism with their children, they will do what they feel will work. We can do little else. Think about what you say before you say it. It sets the tone for your life.”_

    No one is saying they don’t love their kids. But doing what you ‘feel’ may work is dangerous.

    _”I assume you are a medical student or nurse or somesuch and can comment intelligently on the subject, but your behavior on this site suggests you know very little of the heart.”_

    My daughter is autistic.

    _”We have the right to seek any treatment that will cure our kids.”_

    No, we don’t. Not if that treatment is dangerous.

    _”Good luck to you and I hope you aren’t dealing with autism firsthand, and I pray you never have to.”_

    Go to the top of this page click the ‘colophon’ link. That’s who I am and what our association with autism is.

  13. David Martin January 3, 2007 at 23:01 #

    Hi Kevin,

    Ran across your site and was interested in your view. I’m not commenting to say your wrong or others are right. I’m simply trying to understand other points of view on Autism. We have a 6 year old NT daughter, a 4 year old NT daughter, a 4 year old NT son, and a 4 year old son with the Autism diagnosis. (Yes triplets). Matt our boy with Autism is significantly behind his triplet siblings developmentally. He is not yet potty trained and his conversations are more like repeating commands he has heard or scripting from movies. He does do a great job of communicating requests and can answer simply questions or questions that he has been drilled on. He knows his colors, numbers, and most of the time his letters. He also has perfect pitch and can play several self taught songs on the piano – his fine motors skills are holding him back for sure.

    So with that said there is no doubt Matt is special and it is really exciting to think about what he may be able to do several years from now with his musical interest. As a parent my mission is to help my children learn to think for themselves, make educated decisions, become independent and make positive impact on those around them. My wife and I will not always be around to care for Matt which is the driving force behind learning about Matt’s disabilities and doing everything possible to help him to overcome them. I do not want to take away or change anything that makes him special but I do want him to overcome enough of his deficits so he can become an independent member of society. I’m not looking to change his diagnosis. If he can learn to function in society and live on his own then his Autism will truly be a gift rather than a deficit.

    I recently learned of a boy that was hit in the head with a baseball. Since that event the boy was able to remember the weather of everyday of his life. Now in his thirties he can tell you what the weather was like on everyday since he was hit. The injury had no negative affects whatsoever. He is amazing with this gift of weather memory. Now, what if that same event (getting hit with the ball) would have paralized him from the waist down. No more baseball or running. He would still have his gift of weather memory but it would always be overshadowed by the fact that gaining that gift had caused him to lose the very precious gift of being able to walk. This is how I view Autism. A gifted mind or view of the world with an overshadowing deficit.

    So as my wife and I set out to educate ourselves and trust in a few choice physicians to help our son, we are not doing this to change who he is. We do it to maximize his potential so one day he takes the reins himself.

  14. Kev January 4, 2007 at 19:47 #

    Hi David,

    The one thing I might take issue with in your comment is:

    _”This is how I view Autism. A gifted mind or view of the world with an overshadowing deficit.”_

    I like the rest of your comment very much and fear that you may be a closet evil ND ;o)

    I don’t think autism is an overshadowing deficit. I think that it has unique strengths and unique challenges and that part of raising an autistic child is learning oneself the very tricky task of using the strengths to tackle the challenges.

    Its not a walk in the park but neither is it hell on earth – somewhere inbetween :o)

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