Lupron called ‘Junk Science’

21 May

It was only a matter of time before the big papers caught on to some of the quack treatments being pedalled by certain (in)famous autism doctors.

The idea of using it with vulnerable children with autism, who do not have a life-threatening disease and pose no danger to anyone, without a careful trial to determine the unwanted side effects or indeed any benefits, fills me with horror,” (said Professor Simon Baron-Cohen)

“It has become a cottage industry of false hope, and false hope is no gift to parents,” said Autism Science Foundation President Alison Singer, whose daughter has autism. “A lot of these therapies have no science behind them. You are using your child as a guinea pig.”

I blogged earlier this month about the Geier’s at a conference and their totally unsubstantiated claims at this conference:

they are also claiming that they have ‘found that testosterone blocks the body’s ability to make glutathione’. Searching PubMed for ‘lupron glutathione’ returns no hits at all. So where have they found this? Under the stairs? Why aren’t they publishing this science if they’re so sure?

The Geiers said they found signs of premature puberty, such as facial hair, body odor and early sexual development, in 80 percent of the autistic children in their clinic.

Which is yet another unverifiable statistic. A search of PubMed reveals just one study relating to precocious puberty and autism and that showed _no_ link.

Mark Geier said laboratory tests at his clinic show that after just three months on Lupron, autistic children improved in dozens of cognitive and behavioral ways. This just seems another figure pulled out of thin air. Theres nothing anywhere to support such an idea and if they’re so sure why haven’t the Geier’s published?

“In terms of science, there is nothing suggesting the most basic elements of what they are talking about,” said Tom Owley, director of the Neurodevelopmental Pharmacology Clinic at the University of Illinois at Chicago and a specialist in the treatment of autistic children with medicine. “That there are high levels of mercury in autism — not proven! That they have precocious puberty — not proven!”

Hilariously…

Mark Geier responded that these are “opinions by people who don’t know what they are talking about,” saying the pediatric endocrinologists interviewed by the Tribune don’t treat autistic children and have not tried the Lupron treatment. David Geier said prominent scientists support their work and gave as an example Baron-Cohen, the autism expert who told the Tribune that the Geiers’ Lupron treatment filled him with horror.

So Mark Geier is either a liar or badly informed. I know what my opinion is.

AutismOne – the huge Chicago based autism woo fest kicks off today and the Geier’s are scheduled to talk about their miracle drug. They’ll be talking largely to people already sold on the idea that screwing with their kids bone density and hormonal growth is a good thing as long as it helps with their kids autism. Trouble is, it doesn’t.

96 Responses to “Lupron called ‘Junk Science’”

  1. Sullivan June 4, 2009 at 18:44 #

    Also: yahoo groups are a great resource. Like minded people focused on sharing info specific to one issue in support of the greater good.

    I find Yahoo groups to be generally a good source of information on areas like special education.

    I have found them to be an excellent source of information on biomedical approaches to autism–which is why I avoid them. I don’t look for just the “this worked great for my kid” stories. I read the “my kid started this and has been in pain for 20 days” or “my kid has been throwing up every day since we started this” type posts.

    When I see someone claim “that’s die off” for something where there is no die off–I know they are covering up (probably unknowingly) what is known as an “adverse event”.

    I realize that people are harmed by biomed, but no one is taking statistics.

    Most people don’t look at Yahoo groups with an eye for “could this harm my kid”. That isn’t being skeptical or using an open mind. Supposedly those are the hallmarks of the biomed movement–skeptical about standard medicine and vaccines and open minded towards alternative therapies. Ironic, isn’t it?

  2. me.yahoo.com/a/qc5d7PVsi_L65oE9VDybWB6V June 4, 2009 at 19:37 #

    I think you misunderstood my point about my pediatrician. What I said was that my pediatrician recommended the Environmental Working Group website because it is evidence-based. Are you disputing that? Do you have some reason to believe that EWG is not evidence-based?

  3. me.yahoo.com/a/qc5d7PVsi_L65oE9VDybWB6V June 4, 2009 at 19:48 #

    Sullivan I hear you on treatments that are causing children pain, but I think you must be wrong on a couple of points here. For one thing, I easily found a study on Medline demonstrating that porphyrin urine tests were useful for testing dentists who had been exposed to mercury in their work. It was done at the University of Washington. J Toxicol Environ Health. 1993 Oct-Nov;40(2-3):235-46. Secondly, Mary said that her son is in fact being treated by an endocrinologist and a gastroenterologist, and all of her doctors are sharing information, so she isn’t exactly devoid of the advice of extremely well trained people here, who certainly have more training than one day in a conference room somewhere. Yes, I am participating in a Yahoo! discussion group and it is opening my mind but not answering questions. You are both right that I am just going to have to do my own homework and make up my mind as to how to be my child’s best advocate. I just wish that there was a conventional doctor somewhere that I could go to who would both make me feel safe (because I admit it, I love to see that white coat) and make me feel like he or she was really trying. I shouldn’t trash all conventional doctors of course, because I’m sure that there are some who are great. I was simply very dissatisfied with the developmental pediatrician I saw. My regular pediatrician is wonderful, but readily admits she just doesn’t know anything about autism really. She is very leery about the chelation, and is strongly pro-vaccine, but she doesn’t pretend like she knows everything. Interestingly, my mother has told me for 30 years not to take the flu vaccine. She thinks that western medicine is crazy to think they actually know what they are doing when they muck about with the immune system. Some vaccines she reluctantly thinks are better than not using them, but she has said for a long time that anyone who claims that any vaccine is without risks didn’t do very well in their immunology courses in medical school. You might ask your doctor what grade he or she made in immunology. Apparently, many of my mother’s classmates didn’t do so well in it. You don’t have to make an A in every class to graduate from medical school, remember. Pretty scary, huh?

  4. daedalus2u June 4, 2009 at 19:52 #

    Mary, porphyrin testing doesn’t test for metals, it tests for porphyrins. If metals are actually high, they will show up in tests for those metals. If tests for those metals do not show elevated levels, then elevated levels are not present. If mercury is not present, then no amount of chelation can get out what is not there.

    Chelation all by itself can cause neurological damage. For a health care provider to chelate a child without elevated heavy metals as demonstrated by pre-chelation heavy metal testing is to commit malpractice. This is not a close call.

    The use of 10x the normal Lupron dose is nonsense. Once you saturate the LHRH receptors that Lupron blocks, more Lupron in the system does nothing at all except maybe cause side effects. Lupron is a peptide, so conceivably it could cause immune sensitization. If antibodies were raised to Lupron, they might cross react with authentic LHRH and cause permanent and irreversible dysregulation of hormone physiology.

  5. me.yahoo.com/a/qc5d7PVsi_L65oE9VDybWB6V June 4, 2009 at 21:19 #

    ??

    J Toxicol Environ Health. 1993 Oct-Nov;40(2-3):235-46.

    Urinary porphyrin profiles as a biomarker of mercury exposure: studies on dentists with occupational exposure to mercury vapor.

    Woods JS, Martin MD, Naleway CA, Echeverria D.

    Department of Environmental Health, School of Public Health and Community Medicine, University of Washington, Seattle.

    Porphyrins are formed as intermediates in the biosynthesis of heme. In humans and other mammals, porphyrins with eight, seven, six, five, and four carboxyl groups are excreted in the urine in a well-established pattern. Mercury selectively alters porphyrin metabolism in kidney proximal tubule cells, leading to an altered urinary porphyrin excretion pattern. Previous studies in rats have shown that changes in the urinary porphyrin profile during exposure to mercury as methylmercury hydroxide are uniquely characterized by highly elevated (20- to 30-fold) levels of four- and five-carboxyl porphyrins and by the excretion of an atypical porphyrin (“precoproporphyrin”), which elutes on high performance liquid chromatography (HPLC) approximately midway between penta- and coproporphyrins. Changes in the urinary porphyrin profile are highly correlated with the dose and duration of mercury exposure and persist for up to 20 wk following cessation of mercury treatment. In the present studies, the utility of urinary porphyrin profile changes as a biomarker of mercury exposure in human subjects was evaluated. Urinary porphyrin concentrations were measured in dentists participating in the Health Screening Programs conducted during the 1991 and 1992 annual meetings of the American Dental Association and compared with urinary mercury levels measured in the same subjects. Among dentists with no detectable urinary mercury, mean concentrations of urinary porphyrins were within the established normal ranges for male human subjects. In contrast, among dentists with urinary mercury in excess of 20 micrograms/L, mean urinary concentrations of four- and five-carboxyl porphyrins as well as of precoproporphyrin were elevated three to four times those of unexposed subjects. Significant differences in urinary porphyrin concentrations remained when porphyrin concentrations in spot urine samples were adjusted for creatinine levels. These findings suggest that urinary porphyrin profiles may serve as a useful biomarker of mercury exposure in clinical or epidemiologic studies of mercury-related human health risks.

  6. Dawn June 4, 2009 at 23:19 #

    @Yahoo: You have done a lot of research. But I need to point out two bits of information. First, the urinary porphyrin profile is suggested to be used as a biomarker…also known as a screening test. It is not a definitive, diagnostic test that tells whether the person needs treatment or not. Second, most dentists don’t work with thimerosol (I can’t spell, so please excuse it if it’s wrong, I’m typing while preparing dinner and can’t search it out right now). They work with methyl mercury, if they work with it at all, not ethyl mercury. The two have different half-lives, different mechanisms of excretion, different uses. You can probably find elevated mercury in this way, but it doesn’t mean anything regarding vaccines. Almost no vaccine given to a child has thimerosol in it (some flu vaccines do, if they are multi-dose vials). True elevated heavy metal levels (found by the gold standard of blood tests) should be treated. Everyone here agrees that true problems need treatment.

    Regarding premature puberty: a good endocrinologist will do more than just test hormones. While one measure of precocious puberty, they are not the only indicators, as hormonal levels fluctuate. They will do x-rays to review bone age, which is a very sensitive measure for puberty. And, if they find it, they will treat it. Insurance companies will pay for appropriate treatments, but they do tend to insist on evidence-based medicine. (I should know…I work for one)

    Treat your son’s problems. No one, even on this site, thinks a child should be in pain. If there are gastrointestinal issues, see a gastroenterologist. If you suspect other problems, insist that your pediatrician address them or refer you to a specialist who can. If the DAN doctor uses science-based medicine, then that doctor may be a good fit. (Like Sullivan, I have been lucky with my doctors. The ones I stay with respect my research, give me information that I don’t have or need, and keep me involved in the treatment process.

    Most of all: remember that autism is a developmental delay, not a stasis. Your son will change, and grow, and develop. Some things will take him longer to achieve than a “normal” child (personally, I don’t believe there is such a thing). Other things he will do faster or more intensely. Live, love and learn with him.

  7. dr treg June 5, 2009 at 00:25 #

    Seems like urine porphyrins increase with organochlorine exposure aswell.
    http://www.ehponline.org/members/2008/11354/11354.html
    Dr Geier and Dr Rossignol are enthusiastic re porphrins in autism.
    http://www.springerlink.com/content/2j57643185070288/
    http://www.icdrc.org/documents/Rossignol%20porphyrins%20medical%20veritas%202007.pdf
    Perhaps urine porphyrins should be measured in all children with autism as a baseline. Seems an inexpensive test.

    • Sullivan June 5, 2009 at 20:30 #

      Dr Geier and Dr Rossignol are enthusiastic re porphrins in autism.

      Sorry, but this is a red flag for me, not an endorsement.

      You are aware that one of the laboratories frequented by groups like DAN has called into question the porphyrin test? Great Plains Laboratories found the test was very unreliable.

      A big question: do real toxicologists use this test? The answer: No.

  8. dr treg June 5, 2009 at 00:54 #

    And chelation might be the choice treatment from parent`s reports.
    “Porphyrins can be examined in ASDs using Laboratory Corporation of America (LabCorp) random fractionated urinary porphyrin (Test#120980) and red blood cell fractionated porphyrin (Test#803445) testing. Additionally, 2,3-dimercapto-1-propanesulfonic acid and meso 2,3-dimercaptosuccinic acid, previously shown to significantly lower mercury body-burden (and hence lower urinary porphyrins) and help reduce mercury-associated neurodevelopmental toxicity,[18] may improve clinical outcomes of ASDs.[19] The Autism Research Institute reported survey data collected from over 22,300 parents of ASDs. The survey includes a list of 45 medications, 23 nondrug supplements or biomedical treatments, and nine special diets used to treat ASDs. The parents rated the treatment on a six-point scale. Parents, assessing their children’s condition before and after treatment, rated chelation therapy (or the removal of heavy metals) as the highest or best of these 77 choices. Interestingly, 76% of parents said that their child ‘got better’ on this treatment.[20]”
    From Autism Spectrum Disorder-associated Biomarkers for Case Evaluation: Porphyrin Biomarkers (on Medscape internet site).

    • Sullivan June 5, 2009 at 20:21 #

      You do see that a survey of parents on the “Autism Research Institute” (I.e. DAN) website is clearly a biased sample, right?

      Did ARI ever do a followup of the kids that got worse on chelation? Do they have a way to test who might be harmed? The answer, clearly, is no. No one is taking responsibility to collect data and report on kids who are harmed by chelation. So, we just don’t know. We do know it is possible, as one of the test-case kids in the Omnibus Autism Proceeding regressed significantly under chelation and even his reports linked it to chelation.

  9. me.yahoo.com/a/qc5d7PVsi_L65oE9VDybWB6V June 5, 2009 at 02:11 #

    Maybe … I’m not quite ready to there, though, dr treg. Chelation is scary business. I really do think that even if you have a bunch of that yucky stuff in your tissues, it could be scary to release it all like that. I don’t know, that would be a very hard decision for me. And I am still not sold on the idea of provoked testing. It does seem to be true, that if you don’t “provoke,” you can’t actually tell how much lead, for example, is actually being held in the tissues, because there is simply no way to test that. However, the provoking process seems to be problematic because (a) it releases a bunch of the metals into circulation; and (b) it is unclear that anyone has developed any legitimate baselines for use with provoked test results. I’m not sure why the latter would be the case, but I do think it’s a problem that labs are comparing provoked test results to a baseline that is from an unprovoked test. In theory, someone should have been able to formulate a baseline for comparison with provoked testing, but I have not seen anything about it yet in my poking around on the internet, which makes me wonder if there is one.

    • Sullivan June 5, 2009 at 20:17 #

      it is unclear that anyone has developed any legitimate baselines for use with provoked test results. I’m not sure why the latter would be the case

      There is one study on provoked testing. It requires very strict dietary controls to get accurate values. It was also done with adults. The study was done by Vas Aposhian, who is very well known to the DAN community. I don’t know why they haven’t tried to clean up their procedure with regards to provoked testing.

      As it stands, provoked testing is clearly being misused. They compare provoked values to unprovoked values, which is meaningless.

  10. Mary Walker June 5, 2009 at 06:20 #

    To Dawn: Regarding metal source (ethyl vs. methyl mercury)- I theorize that a good deal of the mercury which I believe is in my son could have come from the many and very old dental amalgams that I have. Several speakers addressed this when sources of toxicity were discussed at the recent DAN conference in Atlanta. I have just visited a biological dentist and he took very illuminating digital and magnified photos of all of my amalgams. They are all wearing away, some cracked and very worn. He said that these were never meant to last more than something like 8 years or so (something like that.) Mine were around 25 – 30 years when I was carrying James.

    I also believe that some of the mercury in my son is from the vaccines. I was told James was born healthy and doing just fine, “his scores are great!” so per doctor’s orders James had a hepatitis B shot when he was one day old. He starting having seizures that afternoon and ended up in ICU for a week. This was in 1998, before thimerisol had been removed.

    And besides, when the mercury binds to the tissues in the body do we know really whether or not it does so as ethyl or methyl mercury or does the compound change in a biochemical reaction freeing up the mercury to now bind elsewhere? I really do not know.

  11. dr treg June 5, 2009 at 10:12 #

    Mercury causes Pink disease characterized by social withdrawal and reduced communication skills due to mercury in teething powder.
    But in 2008 the National Institute of Mental Health (NIMH) said it`s investigators would not go forward with a trial of chelation because of the animal trials which linked a specific chelation treatment to brain damage in rats.
    One child died as a result of chelation treatment.
    But the parents seem to often report it as the “best” treatment according to the Autism Research Institute (Medscape article).
    Until the doctors treating with chelation get together and organise a suitably large double-blind random controlled trial the uncertainty will continue.

    • Sullivan June 5, 2009 at 20:13 #

      Mercury causes Pink disease characterized by social withdrawal and reduced communication skills due to mercury in teething powder.

      Mercury in very large doses causes pink disease. The interesting thing is that the symptoms of pink disease are NOTHING like autism.

      There is one person in the world who has studied both autism and mercury poisoning. She has made it abundantly clear that autism and mercury poisoning look nothing alike.

      There is at least one person who has spent time doing actual studies of complementary and alternative medicine (CAM) in autism. She (a) says that the evidence for chelation in autism is VERY poor and that the recommendation is clearly to avoid it. If people who are friendly to CAM don’t approve of chelation, it should be telling you something. You can see her talk on the MIND Institute webstite. If you watch the first talk and listen to the questions, you will see that she doesn’t recommend the DAN protocol to the families she works with. Again, when someone very open to CAM is telling you something like that, it says something important.

  12. daedalus2u June 5, 2009 at 12:57 #

    Pink disease was once a leading cause of death in children. In England and Wales, over a thousand children died from pink disease. We now know that pink disease was from children being given mercury in teething powders. Many contained a grain of calomel, 65,000 micrograms of mercurous chloride (HgCl). Many children received multiple doses of teething powder. Many millions of doses of teething powders were sold per year. Many millions of children received many thousands of times more mercury from teething powder than any child has received from vaccinations (~15 micrograms per dose).

    http://www.pubmedcentral.nih.gov/articlerender.fcgi?tool=pubmed&pubmedid=10645305

    When mercury was removed from teething powders, the incidence of pink disease dropped to near zero and all cases could be tracked to mercury exposure. Deaths from pink disease went to zero also. How many documented cases of pink disease are there from mercury exposure due to vaccines? Zero.

    What was the incidence of autism when children were receiving thousands of times more mercury in teething powders and hundreds died from mercury poisoning? We don’t really know because autism wasn’t diagnosed because it was rare. It can’t have been that many times higher than at present because then it would not have been rare. Did those children who developed pink disease later go on to develop autism? No, they didn’t.

    The idea that mercury causes autism is wrong. There is no data or evidence to back it up, only the self-serving statement of those who sell tests for mercury (which they distort for marketing purposes), those who sell chelation compounds (which can only be harmful in the absence of actual heavy metal poisoning), those who sell supplements, and those who are trying to win the legal lottery by tricking the court into ruling that thimerosal causes autism.

    If mercury exposure from teething powder was so high, that over a thousand children died from mercury poisoning, where is the autism in the many millions of children who received sub-lethal mercury exposure?

  13. Dawn June 5, 2009 at 13:27 #

    Hi, Mary. First, I will come right out and and say I don’t believe in the dentists who want to remove all mercury fillings. What a nice money-maker it is for them. IF one has symptoms of mercury poisoning, which has very clear well-defined symptoms, then it might be right to do so. But otherwise, I will remain sceptical of someone whose wallet benefits by undoing (or doing) something.

    I was sorry to read that your son had seizures in the nb nursery. However, as has often been pointed out, correlation does not imply causation. If your son had not had the Hep B vaccine, but still had the seizures, what would you have attributed the cause to?
    (I am not being snarky, please trust me, I honestly am inquiring). As far as your son’s scores at birth, please let me explain what an Apgar score measures. It basically measures how well the baby survived the birth process. It measures muscle tone, cry, heart rate, skin color, and respiratory effort. I have given babies with severe problems a 9 apgar, because they met the criteria of the Apgar score. In fact, I gave a baby who had frequent seizures in the uterus a 9 apgar. Xe met the criteria for that score. It did not reflect the fact the child had other abnormalities, or known seizures in utero, or anything else. It only measures what can be seen.

    There have been studies that discuss the excretion of ethyl mercury compared to methyl mercury. I’m at work right now with limited internet access; maybe someone can link to one for me?

    @daedulus2u (I have always wanted to say I love your name…) Not only Pink disease, but Minamata syndrome show the symptoms of true mercury poisoning. No one has ever linked elevated rates of autism to the children who had Minamata syndrome, and, it was recognized by that time. And, I disagree with you that autism was rare back when Pink disease was a problem. Autism was not a diagnosis back at that time, if I recall correctly, it was defined near the end of the Pink disease period. With diagnostic substitution going on, maybe the numbers of children with a diagnosis of retardation, childhood schizophrenia, or “changling” could be looked at.

  14. daedalus2u June 5, 2009 at 15:51 #

    Dawn, the number of diagnoses of autism during the time when mercury poisoning was killing many children was nil. Most of those deaths did occur before autism was described by Kanner (and so there was no way for autism to be diagnosed).

    Many of the “mercury causes autism” crowd (including Kirby) say there was a tremendous increase in autism with the advent of the very modest increase in mercury exposure by vaccination (an increase of maybe 100 micrograms spread over years). Many of them say that there was no autism before thimerosal was used in vaccines. If there was no autism in the 1940’s then mercury from drugs doesn’t cause autism because mercury exposure from teething powder was a thousand times higher than mercury exposure from vaccines ever was.

    Dentists use elemental mercury to make amalgam. Methyl mercury is the usual form in the environment and is the major form that mercury is found in fish. Thimerosal degrades to ethyl mercury very rapidly. It turns out that methyl mercury in the gut is absorbed faster and causes a higher blood and brain mercury level than does equivalent doses of injected thimerosal.

    http://www.pubmedcentral.nih.gov/articlerender.fcgi?tool=pubmed&pubmedid=16079072

    This is an important point that the anti-mercury folks try to avoid. The ethyl mercury from thimerosal injection reaches lower levels in blood and brain (by direct measurement), and is cleared faster than is methyl mercury from ingestion (by direct measurement). Tuna fish has ~0.35 ppm mercury. 50 grams of tuna fish has more mercury (on average) as does a vaccination containing thimerosal.

    There has been no demonstration of elevated levels of mercury in association with autism. The only reason I can think of why people are still flogging this dead horse is because of COIs. They are getting money to continue to flog it; money from those who are selling mercury testing services, from those who are selling chelation services, those who are selling supplements, those who are lobbying for donations, those promoting Lupron to remove mercury via a non-physiological (and nonsensical) pathway, and those trying to win the legal lottery by scamming the court into thinking that mercury causes autism.

    It is not a close call.

  15. me.yahoo.com/a/qc5d7PVsi_L65oE9VDybWB6V June 5, 2009 at 18:00 #

    I am curious what you think about the Environmental Working Group? I don’t think they have any of those corrupt motives you discuss, but they seem to think there may be a link between mercury and autism, although you make a good point about not knowing whether autism went up when there was vast mercury poisoning in the past. It does sound like we don’t really know though because autism wasn’t a diagnosis back then. What Dawn says makes sense, though, that we ought to be able to look at the numbers for broader diagnoses that would have encompassed autistic children, although it seems like maybe there are too many variables to ever be sure. For one thing, what about PDD-NOS children like my son? He might be included in any study now, but frankly I doubt that 20 years ago he would have been diagnosed with ANYTHING AT ALL. He would have been considered “a little off” perhaps, or maybe later diagnosed with “learning disabilities.” But he’s not classic autism. At least not yet. Has anyone ever seen figures that exclude children like my son, and do we know whether the number of cases has risen even if you exclude these vague cases that would not have been considered “on the spectrum” 20 years ago? Personally, I have really wondered whether the increase might not be due to these kinds of cases. The thing is, that without all the hoopla, my son might never have even been tested, and that as far as I can tell there is a really high chance that whatever problems he has now will disappear for the most part by the time he is in elementary school. Things could get worse for us, but I’m just saying that I really wonder whether some of the statistics are comparing apples to oranges.

  16. Joseph June 5, 2009 at 18:13 #

    Has anyone ever seen figures that exclude children like my son, and do we know whether the number of cases has risen even if you exclude these vague cases that would not have been considered “on the spectrum” 20 years ago?

    When they look at only “autistic disorder,” i.e. excluding PDD-NOS and Asperger’s, the prevalence is roughly 20 in 10,000 but it can go up to 40 in 10,000.

    It’s similar if they look at “low functioning” ASD (i.e. ASD with MR), but “low functioning” ASD should not be confused with “autistic disorder.”

    Based on California DDS data, I estimate at most 13 in 10,000 children in California are classified as low functioning and registered in the system.

    The prevalence of Kanner autism was estimated at 4.5 in 10,000 in the late 60s and 70s. Obviously, DSM-IV “autistic disorder” is not the same thing as Kanner autism, though.

  17. Dawn June 5, 2009 at 21:37 #

    Daedulus and Sullivan: Thanks. Now tied up with an emergency job for work so couldn’t research info to give me.yahoo.

    Me.yahoo…You are right, I don’t think anyone has really compared all the numbers with diagnostic substitution. I do recall reading, though, that mental retardation diagnoses dropped on a curve that inversely reflected the increase in autism diagnose. I thought I remembered where I saw some references, but I was wrong and don’t have time to search at the moment. antiantivax.jottit.com is a site with good references on other places to search. The book Autism’s False Prophets, by Dr Paul Offit, also has a lot of references you can utilize in your search.

    You are right. 20+ years ago, your son with PDD-NOS might have been considered just “a weird kid”. We have a few in my family who have been diagnosed as adults (even elderly). One child I clearly remember from elementary school was probably more severely autistic, but few kids, unless they were classic Kanner kids, had such a diagnosis. Good luck to you!

  18. Prometheus June 5, 2009 at 21:41 #

    Mary Walker states:

    When something doesn’t work (say like HBOT after $3000) I don’t trash it or the doctor who recommended it because I know it has had great results for other families. I just say it didn’t work for us and move on.

    This is one of the hallmarks of ineffective “therapies” – they seem to work for some people and at some times, but not for other people or at other times.

    “Improvement” in autism is like development in “typical” children, it will come in fits and starts – bursts of rapid improvement followed by longer periods of little or no noticeable improvement. If you’ve started a “therapy” right before one of these “bursts” of spontaneous improvement, you are likely to think that your child “responded” to that therapy.

    You might notice, later on, that he or she fails to have the same response with subsequent rounds of the same treatment, but you will have already labeled that treatment – subconsciously, at least – as one that “works” for your child. Even if it never “works” again.

    One probable explanation for the myriad of therapies that “work” for autism – and the only one that doesn’t require a major “re-write” of basic biology – is that none of them “work” but that they all appear to work when they are given immediately (or even several months, according to some practitioners) before that spontaneous improvement.

    This would explain – very easily – why such disparate “therapies” all have the same sort of effects. And also why it is so common to hear parents say that “Treatment X worked for my child at first, but it seems to have lost its effect.”

    Dawn comments:

    “Second, most dentists don’t work with thimerosol [note: thimerosal or thiomersal]. They work with methyl mercury, if they work with it at all, not ethyl mercury.”

    Actually, dentists work with elemental mercury – not methyl-mercury.

    Be careful about accepting advice from people whose understanding of the basic scientific facts of the matter is so clearly lacking. Too often, well-meaning people repeat and re-repeat “sound-bites” they’ve heard on the Internet or at DAN! conferences without having the slightest idea if they are true or not.

    Dawn also cited the Woods et al paper on porphyrin profiles. While Dr. Woods’ work showed that mercury exposure can result in a particular abnormal porphyrin excretion pattern, what he didn’t show (and hasn’t shown), is whether this particular pattern is only seen in mercury exposure.

    This may seem like a trivial point, but it is not. For example, a fine red rash is seen in almost all cases of measles, but not every fine red rash is the result of measles. In the case of Dr. Woods’ studies on urinary porphyrins, there are several genetic conditions that can cause the same pattern in the absence of mercury exposure. There may also be many other things that can cause the same pattern.

    The “enthusiasm” of Dr. Geier and Dr. Rossignol for urinary porphyrin profiles is irrelevant – neither of them have the education or training to give an informed opinion on the matter. In the case of Dr. Geier, this is not just my opinion but also the opinion of several federal judges who have heard his “expert” testimony.

    Prometheus

  19. me.yahoo.com/a/qc5d7PVsi_L65oE9VDybWB6V June 5, 2009 at 21:48 #

    How do we know that real toxicologists don’t use this test? Have you seen that somewhere? How do they test for heavy metals bound in the tissues? Based on the things I have seen, there is no way to test for this, if the porphyrin thing doesn’t really work … is that true? Do they do some sort of biopsy? How do you know all this? Are you a toxicologist?

    • Sullivan June 5, 2009 at 22:14 #

      I know because I have asked a few. Being interested in what the real experts had to say, I talked to them. I don’t see the point in taking the word of a DAN doctor who has little or no real training in toxicology.

      You could read the transcripts of the Omnibus Autism Proceeding. A real toxicologist went into detail about the correct way to do these tests.

      He noted that a number of parents have brought their children–diagnosed with mercury poisoning by DAN doctors–into his clinic. In all cases the DAN doctors were wrong.

  20. daedalus2u June 5, 2009 at 21:52 #

    They don’t want to “clean up” their provoked testing protocols because the reason for their use isn’t differential diagnosis for differential treatment, the reason is marketing. To scam parents into chelating because of numbers that are “higher than normal”, even though the reason they are higher is because of the chelation provocation.

    When do they stop any of these “treatments”? When the parents run out of money and can’t pay for them.

    But then, placebos are more effective the more expensive they are. Probably that is why 10x Lupron works better than 1x. The augmented placebo effect due to the higher cost.

  21. daedalus2u June 5, 2009 at 22:17 #

    yahoo poster, mercury levels in tissues are proportional to mercury levels in blood. The correlation is quite good. That correlation gets messed up once you start to chelate which is why it is important to do pre-chelation baseline measurements which typically DAN! providers never do because “the results are always negative”. Duh, the results are negative for the simple reason that there is no excess mercury present.

    There is lots of stuff on mercury phsyiology on PubMed.

    http://www.ncbi.nlm.nih.gov/pubmed/16002381

    This paper is part of the very large study where they measured the cord blood mercury level in ~1,000 consecutive births in a region where dietary levels of mercury were very high due to consumption of fish and whale. In this paper there is a plot of umbilical cord mercury vs cord blood mercury spanning about a 2 order of magnitude concentration difference. The correlation is very good.

    If you look carefully, 1/4 of the children had a umbilical cord mercury level above 0.36 ppm. This is the average level in tuna fish which is considered not safe to eat too much of.

    There have been other studies looking at mercury levels in organs following postmortem, and they show pretty good correlations.

    There was a study of autism in the Faroe Islands that included the cohort that was tested for mercury at birth. In spite of the gigantic mercury levels (3/4 were above 60 nM/L, and 1/4 were above 200 nM/L), there were only 5 ASDs in the 1400 child cohort that included the 1000 tested for mercury at birth. 2 of autism and 3 of Asperger’s.

    This is “gold standard” science. It is freely available, anyone can download it, the DAN! practitioners can download it and read it. Why they haven’t is not something I know how to answer, unless it is that they don’t want to.

  22. dr treg June 5, 2009 at 22:21 #

    It is interesting that in the “symptoms of pink disease” reference the conclusions included:
    “Babies who were particularly sensitive to mercury developed pink disease, a syndrome with symptoms including painful limbs, irritability, lethargy, light sensitivity and skin rash with bright pink colour of hands and feet.”
    This suggests some babies were affected and others not at the same dose i.e. some form of genetic predisposition.
    Irritabilty, lethargy, light hypersensitivity and pain hypersensitivity are cardinal symptoms of autism.

    There probably is more than “one person in the world” who has studied mercury poisoning and autism.

    Regarding conventional medicine and complementary medicine –
    Of around 2,500 conventional treatments covered, 13% are rated as beneficial, 23% likely to be beneficial, 8% as trade off between benefits and harms, 6% unlikely to be beneficial, 4% likely to be ineffective or harmful, and 46%, the largest proportion, as unknown effectiveness (Cochrane Library reviews)
    http://clinicalevidence.bmj.com/ceweb/about/knowledge.jsp

    It may be kinder to say that we just dont know too much about conventional or complementary medicine at present – it`s not black and white. Look at the inadequate trials and lack of long-term follow-up of risperidone and melatonin for example.

    Dr Rossignol`s articles on the internet i.e. regarding summaries of papers regarding immunological abnormalities and cerebral perfusion abnormalities in autism are recommended reading and lead one off in other directions of research. He seems to be doing his best.

    The Great Plains Laboratories reference is a personal PDF and not peer-reviewed.

    It seems that the scientists (it is good that they believe only in science) and the believers (it is good that they believe that science does not the provide the only answer) are clashing which is characteristic of the present era. Perhaps one day they will communicate with each other in a constructive manner and accept their own shortcomings.

    • Sullivan June 5, 2009 at 23:22 #

      This suggests some babies were affected and others not at the same dose i.e. some form of genetic predisposition.

      Once again–teething powder was not given in consistent dosages. You don’t know if some parents used more in each application and which parents did the applications more often. Trying to claim a “genetic predisposition” from the experience in pink disease is impossible.

      Dr Rossignol`s articles on the internet i.e. regarding summaries of papers regarding immunological abnormalities and cerebral perfusion abnormalities in autism are recommended reading and lead one off in other directions of research. He seems to be doing his best.

      Er–recommended by whom? His best is not the best.

      There probably is more than “one person in the world” who has studied mercury poisoning and autism.

      Can you find someone who has actually studied mercury toxicity and autism? Real research. I have presented one–one with outstanding credentials–who has clearly stated that mercury intoxication and autism are very distinct in their presentations. There is a non-peer reviewed paper by a bunch of non medical professionals which claims a similarity between mercury intoxication and autism. Dr. Rodier took that apart.

      The Great Plains Laboratories reference is a personal PDF and not peer-reviewed.

      Can we stick to that standard? Can you present a peer-reviewed paper that really shows that autism is caused by mercury poisoning? How about a peer reviewed paper clearly showing a benefit to autistic people from chelation?

  23. daedalus2u June 5, 2009 at 22:39 #

    Dr Treg, The “hypersensitivity” of children to mercury that lead to pink disease was to doses in the hundreds of thousands of micrograms. That was to multiple doses of 65,000 micrograms of HgCl each. What does “hypersensitivity” to ~200,000 micrograms of HgCl tell us about sensitivity to 15 micrograms of thimerosal?

    If only some babies (the incidence of pink disease was about 1 in 500) were hypersensitive to ~200,000 micrograms of HgCl, how many would we expect to be sensitive to 15 micrograms of thimerosal? 1 in 150? Since some DAN! practitioners do use homeopathic thimerosal, maybe there isn’t enough mercury in vaccines? [/sarcasm]

    • Sullivan June 5, 2009 at 23:14 #

      Dr Treg, The “hypersensitivity” of children to mercury that lead to pink disease was to doses in the hundreds of thousands of micrograms. That was to multiple doses of 65,000 micrograms of HgCl each. What does “hypersensitivity” to ~200,000 micrograms of HgCl tell us about sensitivity to 15 micrograms of thimerosal?

      There is no established “hypersensitivity” derived from pink disease. The dosage was not controlled nor monitored. One can not say that those who had reactions got the same dosage as those who did not.

  24. dr treg June 5, 2009 at 23:01 #

    Drug reactions are dose related or idiosyncratic or both.
    It is possible that because some babies were unaffected and lived means that some babies can tolerate very high levels of mercury exposure without developing any problems.
    On the other hand some babies may develop problems with low doses of mercury if they are genetically predisposed.
    http://en.wikipedia.org/wiki/Predictive_medicine
    It is interesting that complementary medicine often introduces the immunogen at low doses in order to convert the immunogen into a tolerogen.

    • Sullivan June 5, 2009 at 23:12 #

      It is interesting that complementary medicine often introduces the immunogen at low doses in order to convert the immunogen into a tolerogen.

      I really hope you aren’t referring to homeopathy. Some vaccines have a single particle to supply the antigen. If people are claiming to supply less, it would be amazing.

      As to Pink disease–the variablity in response is impossible to peg on any one cause. We have no way of knowing which kids got what dosage. There was almost certainly a large variability in dosage.

    • Sullivan June 5, 2009 at 23:31 #

      Drug reactions are dose related or idiosyncratic or both.

      Above a threshold dosage. That threshold will depend on the individual, but each individual will have a threshold dose.

      This is definitely the case with mercury. Since we are all exposed to mercury every day, one can not claim that any exposure to mercury will cause intoxication. There is a threshold.

  25. dr treg June 5, 2009 at 23:49 #

    I agree there are no scientifically peer reviewed papers that
    1. Confirm that mercury is a proven immunogen in autism.
    2. Confirm that chelation benefits patients with autism.
    With regards to the use of “hypersensitivity” – I was referring to the clinical hypersensitivity to feelings and sensory stimuli in Pink disease.
    It is interesting that 4% of children died from “teething” on Victorian death certificates – perhaps the deaths were due to mercury.

  26. dr treg June 6, 2009 at 00:18 #

    I disagree that a threshold dose is imperative as anaphylactoid reactions to mercury have been reported.

    • Sullivan June 6, 2009 at 01:06 #

      I disagree that a threshold dose is imperative as anaphylactoid reactions to mercury have been reported.

      Then these people will undergo reactions daily (actually, more often than that). Everything they eat, drink, even breathe contains some level of mercury.

      If a person had a zero tolerance for mercury, that person would be in a constant state of reaction to mercury. So, you may disagree, but the facts and logic are not with you.

  27. dr treg June 6, 2009 at 01:50 #

    Anaphylactoid reaction is an extreme idiosyncratic immunogenic response – maybe there are less severe idiosyncratic immunogenic responses in genetically predisposed people.

  28. xpressionsbydesign June 6, 2009 at 22:02 #

    I agree with the writer above who said he was depressed after reading the amount of discourse when it comes to differing opinions on the causes and treatments of autism. I’ve read most of the posts in this topic and wonder if the point of it all is to make parents of children with autism (newly diagnosed and beyond) completely hopeless. I’ve read that DAN doctors are a crock, biomedical makes no sense, hyperbaric oxygen is a waste of money and that there is absolutely no connection between mercury in vaccinations and autism.

    That one is truly baffling because mercury in everything else is considered toxic (dental fillings, tuna) – I’m no scientist, but how is a substance potentially toxic in one thing and not another? Is it the amount of mercury as in a little won’t kill you or make you sick? How about the size of the person ingesting the mercury, infants – can they take all amounts safely? How about medically fragile babies – same question? I would also not be so skeptical if there wasn’t so much money tied to removing blame from vaccine companies. Also, how about the work of Robert Kennedy Jr – is he also full of it? And the vaccine injury court that awarded damages to 2 families in the last year – they just gave up and went along? I’m not trying to incite, but there does seem to be some conflicts in thinking.

    So if everything biomedical is wrong or a waste of time, how do I explain the gastrointestinal distress my son continues to have? Do I continue to rely on ABA, TEACH, Floortime, RDI, Social Thinking and the countless other behavioral interventions available? Believe me you can go just as broke relying on those approaches too also with little or no scientific justification. Or do I just give up because they’re all crooks preying on the desperation of parents with too little time and not enough support?

    The internet can be a wonderful thing, bringing people together to share information and support. It can also be a cold heartless place reminding us all the time how truly screwed up this world is.

    Autism is a complex disorder – too complex to explain on line. The children with autism are also so different that to say that one thing based on your understanding and your child is true for all others. I just wish that I could find that voice of reason, like the writer above, who is above reproach that would take the time to understand my child’s particular brand of autism and make recommendations that I could believe in and as a bonus – I wouldn’t have to go bankrupt in the process.

  29. Dawn June 6, 2009 at 22:29 #

    @Sullivan: guess I wasn’t clear regarding the porphyrins paper (or I was typing while distracted with work…either way I wasn’t clear as to my thinking). I meant only that the porphyrins testing might be a useful screening test to identify those who might need the more specific and accurate diagnostic testing. In medical thought, a general screening test can be used on a large population to identify the smaller population that needs more specific testing. For example: most women get mammograms after a certain age. If the mammogram (a screening test) finds something that appears abnormal, the woman undergoes additional testing, for example, an ultrasound or a needle biopsy, to determine what the abnormal finding actually represents. It might be a normal variation or it might be cancer. The mammogram doesn’t differentiate (as a sceenting test, it has a fair amount of false positives) but the diagnostic testing does. If what I wrote said otherwise and confused people, I apologize.

    As for the dentists error..my bad. I misread the information about what type of mercury dentists used when I checked. I blush in shame and admit that chemistry is not one of my stronger subjects. Thanks for the correction.

    Back to the coal mines.

  30. dr treg June 7, 2009 at 01:26 #

    The drug companies must have known about the difference between EPA and FDA mercury exposure standards when designing their drugs. They also have details of adverse reactions after the initial thiomersal immunisations were introduced in clinical trials in humans.
    Why were the drug companies allowed to introduce treatments which included mercury above the EPA recommendations in the first place?
    “The FDA noted that while the vaccination schedule at that time might have exceeded EPA standards for mercury exposure during the first 6 months of life, it did not exceed those of the FDA”
    http://en.wikipedia.org/wiki/Thiomersal_controversy
    Why do the FDA and EPA disagree on mercury exposure standards?
    Who really knows what to believe regarding mercury and the inflamed autistic brain?
    “2007 – In February, the U.S. National Institute of Mental Health (NIMH) halted an experiment that gave the chelating agent DMSA to children with autism whose blood had detectable but nontoxic mercury or lead. The experiment, by Susan Swedo, head of autism research at NIMH, had begun in September 2006 but was halted after a 2007 report showed that chelating agents could cause cognitive problems in rats; Swedo decided that NIMH’s limited resources were better focused on a different experiment involving minocycline in children with regressive autism. Critics said the chelation experiment posed a risk to children for what is sure to be no medical gain for them; proponents said the therapy is in broad use and the experiment would provide scientific evidence about any benefits or dangers.[55]”
    Doesnt minocycline cause enamel defects in children? Chelation treatment continues so why not perform a double-blind controlled clinical trial?

  31. me.yahoo.com/a/qc5d7PVsi_L65oE9VDybWB6V June 25, 2009 at 12:52 #

    I just lost a very lengthy and if I may say so myself very interesting post (self-deprecating laughter), lucky for you I am now forced to give you the abbreviated version: sorry I dropped out of this debate, life and all that, you know; I found the story of pink disease to be astonishing indeed when I read it — it is the story of a medical mystery in which industry, pharmacists and conventional medicine fought to keep dangerous chemical powders on the market and unconventional doctors chelated patients without having done a double-blind controlled trial, children who had pink disease but no history of mercury exposure, thousands of children using the powders without developing pink disease, and in the end, only a jury of laypeople in a court of law finally ruled that the powders did indeed cause the pink disease. It was not the industry, nor the conventional doctors, nor the conventional scientists, nor the government who finally took the powders off the market. I found this an astonishing tale and wondered that anyone in favor of keeping thimerosal in vaccines would point to this as any sort of evidence in their favor.

    • Sullivan June 25, 2009 at 18:48 #

      glad to only have to read the abbreviated version. While, yes, the teething powders were a very bad mistake that hurt people, the rest of your post is a terrible stretch. Sorry, when the history is written, Pink Disease will be in the chapter of “here’s a product that hurt people” and thimerosal in vaccines will be in the chapter of “another failed theory as to why the autism rates were climbing”.

  32. Joseph June 25, 2009 at 16:02 #

    I found this an astonishing tale and wondered that anyone in favor of keeping thimerosal in vaccines would point to this as any sort of evidence in their favor.

    It is an astonishing tale. Like most altie tales, it appears to be mostly revised and exaggerated. It’s kind of like the tale that scientific evidence favored the tobacco companies.

    Let’s see evidence that scientific consensus was against the mercury etiology of pink disease, for example. If you simply search Google Scholar for “pink disease mercury” prior to, say, the year 1960, it’s clear that mainstream science was on the case.

    It’s a poor historical analogy for other reasons. The main difference is that pink disease mostly went away after removal of mercury from teething powders. Additionally, medical findings in pink disease are completely consistent with mercury poisoning.

  33. calliarcale June 25, 2009 at 19:07 #

    I know we’ve gone on into discussions of mercury, but I just wanted to address one thing the Yahoo! posted had to say, to give him some more useful information.

    “I also learned, according to the national institute of health, by the way, that celiac disease is associated with epilepsy, lupus, lymphoma, thyroid problems and a bunch of other stuff. Since my grandmother died from complications from late-diagnosed celiac disease, her brother died in an institution due to epilepsy, my dad died of lymphoma, I (and an aunt, a cousin, and my grandmother) have thyroid problems and my dad’s sister has lupus, yeah, I pretty much went gluten free right away because at that point it seemed kind of obvious that my family is allergic to gluten.”

    If there is celiac disease in your family, it is a good idea to learn more about it. One of the first things you need to learn is that it is *not* an allergy. It’s an autoimmune disorder, and allergies are also autoimmune disorders, but it’s more complex than your typical histamine reaction. Rather than a systemic reaction as in the case of, say, your typical nut allergy, the reaction in celiac sprue is confined to the villi of the small intestine. They get relentlessly attacked by antibodies. The damage leads to varying degrees of gut problems, which usually resolve just fine once gluten is removed from the diet. But since this is usually the only symptom, it can go undiagnosed for a long time, especially if the person has a relatively mild case. (Some can tolerate oats, and just get bowel discomfort if they eat wheat. Others end up with a completely shut-down digestive tract from the slightest bit of gluten.)

    The reason celiac disease is connected to those other things is because it is an autoimmune disorder, and those can definitely run in families. They can be hard to diagnose, so while I wouldn’t stay up at nights worrying about them, it might help your doctor diagnose one more quickly if they know there’s a family history.

    Oh, and about going gluten-free? You may already know this, but in case you don’t, be warned that it can be harder to avoid gluten than it looks. It’s not just bread that you have to worry about. Whiskeys and most beers are problematic.

    Read these for some more information:
    http://emedicine.medscape.com/article/171805-overview
    http://www.csaceliacs.org/

  34. Joseph June 25, 2009 at 21:33 #

    Is there a comment caught in the spam queue by chance?

    Anyway, the gist of it was that if you simply search “pink disease mercury” or “acrodynia mercury” prior to 1960 over at Google Scholar, you’ll see that the Yahoo poster’s “tale” is just that – a tale, one with no basis in reality.

    • Sullivan June 25, 2009 at 22:16 #

      Is there a comment caught in the spam queue by chance?

      Not any more!

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