The issue of Lupron finally raises its head above the parapet of autism. I’m going to attempt to ‘bring together’ the various discussions that have sprung up and then have my say on the subject. But before I do, lets just clarify what we’re talking about.
There is an unsubstantiated theory put about by Boyd Haley and the Geiers that testosterone levels are raised in autistic people. There is a further unsubstantiated theory that high testosterone counteracts the bodies ability to be chelated of its mercury efficiently. That the excess mercury got there is also due to an unsubstantiated theory that thiomersal in vaccines is responsible.
The use of chelating agents (which alter the body’s chemistry) have never been tested for safety or efficacy for autistic people (who have chemically different brains than non-autistic people).
So, in my opinion, we have a potentially dangerous and thus far non demonstrably necessary treatment being administered to autistic people. It was put about awhile ago that a typical course of chelation should last 18 months to two years. Now we seem to be approaching that time scale for a lot of children and there seems to be little to no response (unless you believe the unverified claims of Generation Rescue), there’s now a casting about for a reason why the chelation isn’t working as was first thought.
Yes, I have my own opinion as to why it isn’t working. I’m sure you can guess what that opinion is.
But whats _their_ opinion? The chelationistas? Why, that all that pesky testosterone is impeding the chelating of all that pesky mercury. And what reasons are given for that idea? Why, that there are four times as many male autistics as female autistics.
Now that the testosterone theory is out in the wild, suddenly the chelationistas are ‘remembering’ that their kids seem to be developing quickly, that they have a lot of body hair, that they become violent during chelation.
Yes, I have my own theory why they become violent during chelation. I’m sure you can guess that opinion is.
And thats it. Thats why there’s a sudden mad dash for Lupron. So lets now look at how its used.
Quite simply, its being used because the Geier’s are ‘excited’ about using it.
Try going to the NAA website and ordering the DVD or CD from the Geier’s lecture this past weekend. You’ll learn about their work with testosterone and Autism. This research is in its’ infancy, but the Geiers are SO excited about this topic.
Dr. Geier now has a testosterone study going on, I think it’s Lupron injections every 45 days? until age 12, while chelating with DMPS-TD. there’s some other stuff, too, he’s got I think 8 kids in the study, we’re working on getting all the stuff out of the way for allie Kat to participate, last I knew he had no girls.
EoH.
My daughter will be seeing the Geiers this winter/spring and we’re about to have her tested to see if their protocol is appropriate for her. I’ll report the results when we have them…but in the MEANTIME, you can watch the Reverend Lisa Sykes discuss her son Wesley’s progress after receiving Lupron treatments!
EoH.
Kathleen at Neurodiversity has a very thorough round up of this side of things which I strongly suggest you read. But lets not pretend – children are already being treated with Lupron.
So, just to recap – an unsubstantiated treatment is now being used to treat an unsubstantiated condition which allegedly aids an unsubstantiated process.
But what _is_ Lupron? Whats it used for?
Its used to chemically castrate sex offenders in the US and also to treat Prostrate cancer. Basically it inhibits testosterone. In females it can cause a drug induced menopause. Its only legitimate sue for children is to treat precocious puberty.
There’s been at least one lawsuit associated with Lupron.
Many women with endometriosis who have been given Lupron injections have had severe side-effects, including cardiac arrhythmias, dizziness, swelling, chest pain, depression and confusion, bone pain, extreme fatigue, vision loss, high blood pressure, and nausea. Some of the women claim their side- effects last long after treatment is completed. The plaintiffs in the lawsuit against Tap claim, for example, to have experienced serious injury after Lupron injections, “resulting in pain and suffering, disability, disfigurement, mental anguish, loss of the capacity for enjoyment of life, expense of medical care and treatment, loss of earnings, loss of the ability to earn money.”
This is a serious drug. Nothing to make assumptions about – nothing to treat _children_ with unless they have a diagnosis of Precocioous Puberty which can be tested for without needing to inject Lupron.
The science that underpins the Geiers is practically non-existent and based pretty much on either their assumptions regarding mercury or their assumptions regarding testosterone – neither of which are authenticated. You can view an overview of the bad science behind the Geiers suppositions at Bartholomew Cubbins site and at an ongoing discussion at the Not Mercury site.
What happens when Lupron is deemed ‘inefficient’? What will be the next inhibitor? What will be the next unnecessary chemical pumped into autistic kids to ‘uninhibit’ the chelation process? And lets not even start on the bizarre cognitive dissonance necessary to refuse to trust Big Pharma regarding thiomersal and yet rush to embrace it regarding Lupron.
Left Brain Right Brain 
Well, the next “logical” step is physical emasculation, and after reading your post, I don’t think it’s all that improbable.
There is a serious ethical problem in using ANYthing that changes a person’s body chemistry, with or without that person’s permission. In the case of Lupron, I fall onto the side of “get rid of Lupron and those idiots who designed it, by any possible means”. The stuff’s too bloody dangerous.
Great roundup of the current discussion Kevin. The apparently tireless and thorough efforts of Kathleen, et. al. never cease to amaze.
David said,
There is a serious ethical problem in using ANYthing that changes a person’s body chemistry, with or without that person’s permission.
What about vaccines?
That’s a good point Kevin. If the chelation was a wonderful as they all claimed, especially with Handley’s adverts for TD DMPS, that all you do is chelate the kid and in 2 years MAX the kid is TOTALLY normal.
But for some reason that didn’t really work for Handley’s little boy, so then they went to nasal B12 and let me tell you that kid started talking immediately!!!
So why doesn’t he sue Buttar for distracting him from MeB12 nasal spray, think of the time he wasted on TD DMPS. Those are months you can’t get back, should’ve been doing the nasal B12 all along, Buttar shoulda known that, right? Buttar is practically god, isn’t he?
So Buttar’s making sure that all his patients try nasal B12 now, right? I doubt it. He’s doing IV EDTA or something.
I wonder if there’s a competition between the DAN! docs to see how many kids they can hurt before they get their licenses removed? Jang has one that we know of, Kerry has one (killed), Levinson has one (bad reaction to IVIG, kid spent days in the hospital following what looked like a near deadly reaction to IVIG). I’m guessing Hayley is aiming for hurting a child with gold-salts and that the Geiers are going for serious damage with lupron depot ™. Only the other Stephen Edelson has had his license removed, as far as I know. He nearly killed several kids with different stuff including baking them in very high temperature saunas.
Yup, looks like a contest.
Baron-Cohen published a paper about elevated fetal testosterone levels leading to increased autistic behaviors,
but that is how testosterone directs brain development. Once the brain is there, lowering hormones won’t change a thing. How can this go on without IRB approval? I used to work in clinical trials for REAL DOCS, and the ethic rules were tight. Who is looking out for these kids?
GG, you fucking idiot…
Vaccines do not change the actual chemistry. They are not like, for example, injecting a hormone or injecting a psychotropic medication or injecting a bloody chelator.
Vaccines don’t change the chemistry.
Hormones do. Psych-meds do. Chelators definitely do.
GG, go do other stuff until you can be sensible.
GG, you fucking idiot…
Vaccines don’t change the chemistry?
No David, you’re the FUCKING IDIOT and that’s not pending!
You’re a worthless piece of shit and don’t ever talk to me that way again!
As always, who starts the name calling? Your side!
“As always, who starts the name calling? Your side!”
Best, and anyone who reads his remarks, might beg to differ.
Please keep this going, I’m gonna get some popcorn.
This is K.C. not Best.
When I said “what about vaccines”? I don’t think I was being out of line with that question.
David’s reply to me was way out of line.
I am just going to walk away from this one.
Well, haven’t checked up here in the past few days (busy with Stuff), but I see that the soap opera plot is essentially the same:
On one side, love in teh forms of sincerely and anecdotes should triumph all, damn the consequences, and on the other side, love in the form of reason and respect should triumph over all, damn the detractors.
Same characters, same arguements, only the plot details change, and the actors playing some of the characters. Yeup, a soap opera fer shure, one for those who’ve no interest in following sappy love triangles.
Bartholomew, would you get me some nachos while you’re up?
andrea
GG: “You’re a worthless piece of shit and don’t ever talk to me that way again!”
LoL
You are so sad!
GG: “Vaccines don’t change the chemistry?”
No, they don’t.
Prove to me that they do.
Vaccines have an effect on the microbiological functions in the body. Chelators actually change the chemical compositions of tissues (yes, blood IS a tissue), and psych-meds alter the chemistry of various organs outside of the brain.
GG: “This is K.C. not Best.”
Um…. so?
“Don’t ever talk to me that way again!”
You were pounding your patent leather mary janes while you said that, weren’t you?
Gentlemen – Please both be cool.
I’ve deleted both of your last few comments as they’re moving way, _way_ off topic – you have each others email addresses if you want to go for it privately :o)
Kevin, you use the word “unsubstantiated” very poorly when you refuse to mention the extensive lab testing used to determine whether a child is a candidate for therapies like chelation or the lowering of testosterone.
Would it matter to you that my own daughter’s testosterone levels are 300% above normal? I’ve mentioned that in many blogs and listservs… but you leave data like that out of your blog. Because it’s “unsubstantiated!”
You also don’t seem to care to mention that these children who are chelated are exhibiting symptoms of heavy metal toxicity as well as testing very high for metals such as mercury, lead and copper (among others).
Unsubstantiated? You must think we’re monsters for wanting to give our children the appropriate treatment for what they’ve been diagnosed.
You don’t really look at any of the data, do you?
_”Would it matter to you that my own daughter’s testosterone levels are 300% above normal? I’ve mentioned that in many blogs and listservs… but you leave data like that out of your blog. Because it’s “unsubstantiated!—_
Thats right, thats exactly why I do it. The ‘data’ is anecdotal, comes from an unreliable source (Great Plains or Doctors Data?) and blogs and listservs are not documented sources.
_”You also don’t seem to care to mention that these children who are chelated are exhibiting symptoms of heavy metal toxicity as well as testing very high for metals such as mercury, lead and copper (among others).”_
Once again, please list these symptoms that your daughters autism amd mercury poisoning have in common, then show me where they appear in the diagnostic literature for autism.
_”Unsubstantiated? You must think we’re monsters for wanting to give our children the appropriate treatment for what they’ve been diagnosed.”_
I don’t think you’re a monster. I think what the Geiers are pushing on you is monstrous. Its monstrous because its unverified, has no actual data to back it up, not safety tested and will have serious reprecussions for your daughters health. Please Erik, stop and think about what a hormonal suppressor would do to your pre-pubescent daughter.
_”You don’t really look at any of the data, do you?”_
What data? I look at the unsubstantiated theories stacked like a swaying house of cards and I wonder how anyone can believe in such rubbish with zero evidence.
Erik,
You wrote:
“You don’t really look at any of the data, do you?”
I am going to respectfully ask what “data” you might be referring to. So far as I can tell, you have presented none of it.
I will add that this reminds me of Dr. Fudeberg’s comment that Dr. Grether (or that “epidemiologist from California” as he refered to her) wasn’t up on the recent literature.
She isn’t just up to date (as evidenced by her lit review) she is current.
Just on the side (irrelevant to all else) do you think that Dr. Fudenberg’s comment was mistaken? Or just not up to date (via failure to keep up on the literature)? Also, what are the ethics of that? I would truly like an answer.
Erik,
You never responded to this same question at the Not Mercury blog.
I want to be considerate of your personal stake in this, but at the same time, I want to understand the ‘science’ as you see it and as you are presenting it.
“My own daughter’s testosterone levels are 300% what they ought to be. Normal level is 0 to 6. Hers is 19. And her mercury is very high… but lower than it was six months ago.
How was the mercury determined as high?
We’re you simply told this? And you believe whatever anyone tells you?
Was this determination made based on standard assays with published norms that are supported by correlative studies that were subsequently put the welcome process of “real” peer review in the scientific community?
Or, we’re you told this, and presented with an explanation that lead you to conclude, “well, makes sense to me”.
BC said,
“It must be frustrating to know that the people questioning your heros aren’t selling any competing product, they’re not trying to make a quick buck or million.”
Erik,
BC brings up a good point. The available science in this situation ain’t pretty.
On that note, I do sincerely wish you nothing but health and happiness for you and your family.
Erik,
While we’re on the subject of unsubstantiated things, you also left this unaddressed at the Not Mercury blog.
You said “The presence of testosterone traps mercury in the body and makes it more difficult for children who are ‘poor excretors’ to get rid of it. when they bind, both accumulate in the body.”
Are you suggesting that autistics are poor mercury excretors? Because if you are, wow, Erik, that could be a huge assumption on your part. If you’re basing that personal assumption on the Jill James papers, you should really work to understand the science behind this, especially as it relates to small and non-representative research populations, and the difference between observations and scientific proof. While you’re at it, even if you manage to dig up anything that proves this assumption (the AZ researcher I discussed this with was unable or unwilling to provide anything additional), you might also consider whether or not it matters. Who cares if autisics are poor excretors of mercury if they don’t necessarily have higher levels of mercury requiring excretion in the first place. I imagine you’ll bring in the Holmes hair study (which won’t go far, and will likely be discredited soon anyway – anyone here can point you to relevant analysis of this, don’t forget to read up on the use of Doctor’s Data Labs too). Or perhaps you’ll even attempt to bring in the infomercial-ish Bradstreet/Adams previous DMSA study (let me know if you need a copy, because you won’t find it in the real peer-reviewed medical journals anywhere).
Orac weighs in.
If I was told that my child was in the yellow-to-red zone of the testosterone scale the first thing I’d do is go to a real endrocrinologist. Then I’d ask, what does 300%, or 3-fold, really mean? What scale are we talking about? How is the amount/concentration assessed? And then I’d go from there. I know of pregnant mothers whose total thyroid was high, but the free thyroid was pretty close to normal. Turns out the scales aren’t generated using data from pregnant females.
If Laurel and Hardy told me to get my kid on Lupron, I’d be getting a second opinion with actual professionals, you know, real doctors with real endocrinology credentials, real toxicology credentials, and real pediatric credentials. But then, I just like keepin’ it real.
There is a serious ethical problem in using ANYthing that changes a person’s body chemistry, with or without that person’s permission.
I’m not sure you fully understood the point you were making.
Vaccines have an effect on the microbiological functions in the body.
Vaccines induce an immune response, which requires a change in body chemistry.
They are not like, for example, injecting a hormone
What is unethical about a diabetic receiving insulin?
Kev – any chance of you getting your quoting system fixed? It worked in the preview, but not live.
hurricane: “Vaccines induce an immune response, which requires a change in body chemistry”
Not in the same way that chelators and psych-meds and hormones work…
BC said: “If Laurel and Hardy told me to get my kid on Lupron, I’d be getting a second opinion with actual professionals, you know, real doctors with real endocrinology credentials, real toxicology credentials, and real pediatric credentials.”
No doubt herein lies the pyschosocial issue. Imagine how much fun a dr. visit to the real Laurel and Hardy could be. They’d be tripping on each other, knocking s#@! over in the exam room, Hardy would motion for a scapel and Laurel would hand him a banana. No, it wouldn’t be serious, but it would be entertaining.
The only apparent difference here is false hope (instead of entertainment) is being substituted for medical sobriety.
H – blockquotes are…interesting…when I try to render them – I’m compromising with em’s for now.
Hurricane said,
Vaccines induce an immune response, which requires a change in body chemistry.
I feel vindicated now.
Not in the same way that chelators and psych-meds and hormones work…
They still change body chemistry.
So what was your point when you said: “There is a serious ethical problem in using ANYthing that changes a person’s body chemistry”? There was no qualifier that it had to be something that worked in the way a chelator or psych-meds do, and there was emphasis on the any in anything.
I think with subjects like this it pays to be as clear as possible with the arguments or you’re going to diminish the credibility that they might otherwise assume. Yours were severely diminished.
I can try to explain it when i’m not so tired….
Vaccines change body chemistry in the sense that they induce an immune response followed by immune memory, antigen recall, etc. It can be argued that the degree of change is quantifiable by vaccine antigen specific antibody titers, a secondary change in body chemistry that is not unlike any change that might occur in response to infection or exposure to a pathogen.
As Hurricane pointed out:
They are not like, for example, injecting a hormone
Not at all.
Hurricane:What is unethical about a diabetic receiving insulin?
Absolutely nothing. It would be unethical to withhold insulin in most cases. How is that at all similar to giving Lupron to an autistic child to assist with chelation? I can’t think of many parallels.
I don’t know for sure what David is getting at, mostly because I don’t understand the chemistry involved in all of this.
But I do think there’s an ethical problem with using anything that alters body chemistry, period, without seriously weighing the consequences.
My cousin has Type I diabetes. He takes insulin to control his blood sugar levels. If he does not take his insulin, he could die. So, basically, death vs. a couple of needles a day so he can eat somewhat normally. Also, when you take insulin, it does not change your chemistry except insomuch as it makes your cells able to access the energy you take in as food. That’s the same with the other medications that are sometimes prescribed to diabetics. My mother is on something because she is “insulin resistant”, which basically means that her cells don’t let the insulin do its job without help. She still produces her own insulin, though.
I have ADHD. I currently take Strattera to manage my symptoms. If I do not take my meds, I have a lot of trouble with interpersonal interactions and with completing (or even starting) tasks. I have to be good at all of those things for my job. But the side-effects may not be worth it, and I’m evaluating my treatment plan right now. Strattera remains in the system – it builds up over time – unlike the amphetamine medications that I was on previously (first Concerta, then Dexedrine), which are used up within the day (some within the span of a few hours).
So far as I understand it, vaccines act as passive agents that cause the body to produce antibodies to the disease in question. The memory of the antibodies remains in our system, so that if we come into contact with a “live version” of the disease, we can immediately deal with it and avoid getting sick.
I am unable to speak to the ways in which chelation and Lupron might change a person’s body chemistry.
I just watched an older episode of Law & Order: Criminal Intent which may actually shed some light on this whole deal.
A bunch of schizophrenics who all lived at the same halfway house were being operated on – unnecessarily – by an eye surgeon who, it turned out, thought that he would be able to stop their visual hallucinations by thinning their lenses. His premise? That schizophrenia is caused by faulty sensory organs, not by the signals being misinterpreted by the brain.
I believe (though I missed part of the interactions) that he had begun having hallucinations of some kind, and so since his own brain couldn’t possibly be wrong, it must be the organs that were malfunctioning.
That’s an entertaining plot device Jannalou, but I am not understanding how you are meaning that it relates to anything being discussed here?
andrea
(Besides, it IS just a plot device…)
I’d venture to guess that Jannalou might be suggesting that all the scientific debate in the world may not matter if the Geiers are simply clinically delusional in the first place.
And the prize goes to…
DoC. 🙂
Though I was also thinking about the human propensity to hate that which we see in others that we also dislike in ourselves. We will do whatever it takes to distance ourselves from that similarity.
By the way, I just finished reading Gifted, a graphic novel put out by Marvel Comics, and just wrote a letter to Joss Whedon about it. (Joss is writing Marvel’s Astonishing X-Men title right now; he’s the brains behind such TV shows as Buffy the Vampire Slayer and Angel.) I think it should be required reading, just because of the parallels.
clone3g, to start, not all the quotes attributed to me are from me 🙂
Absolutely nothing. It would be unethical to withhold insulin in most cases. How is that at all similar to giving Lupron to an autistic child to assist with chelation?
I never said it was, however when someone states that a) administering any substance that alters body chemistry is bad, and then later b) that hormone therapies are bad – without any qualifiers in either example, then that is clearly a case of sensationalistic misinterpretation. I’ve given an example of an instance (diabetes) where the exact opposite is true. So back to my point – inaccurate, misleading, and misunderstood science does nothing to support one’s arguments in a debate of this kind.
For those of you that think taking insulin doesn’t alter body chemistry, please try to understand that it does. If you take an aspirin, it alters your body chemistry. If you climb up a mountain the change in altitude will alter your body chemistry. There are a lot of things that alter our body chemistry, clearly without many of us knowing that it’s happening. If you receive vaccine therapy, you will undergo a change in body chemistry. If you receive Lupron it will induce a change in body chemistry.
My advice it to not get caught up in the kind of trap the tabloid media likes to set, don’t generalise or sensationalise with what little we might know.
Thank You Hurricane,
I agree that body chemistry can be changed by any number of internal and external factors and I agree that broad statements without qualifiers can be sensationalistic. I do think that David could have been more clear in his response to the simple question “What about vaccines?” but the source and context of the question may lead one to think it wasn’t such a simple question at all. I know I didn’t read it that way.
They both change body chemistry, point taken, but to what degree and risk/benefit ratio?
David didn’t say it is unethical but rather;
“There is a serious ethical problem in using ANYthing that changes a person’s body chemistry, with or without that person’s permission.”
And I agree. There is a serious ethical problem here and however that may compare to vaccination or insulin use is irrelevant. Even if vaccines killed 50% of recipients (of course they don’t) it wouldn’t justify or address the ethics and wisdom of using Lupron on an autistic child.
Even if vaccines were proven to be a major cause of autism (and of course they haven’t) it wouldn’t justify or address the ethics and wisdom of using Lupron on an autistic child.
The Geier’s sitcom schemes don’t justify using Lupron to treat autism and nothing is being done to address this very serious ethical problem.
Jannalou,
The X-Men stories as analogies to historical forms of xenophobia are absolutely wonderful. We had a wonderfully geeky dinner discussion about that one night! (And Joss Whedon’s ability to spin good stories leaves us in high hopes for future developments as well — will they *please* let him put Firefly back on television again?!)
andrea
“It’s so easy to laugh, it’s so easy to hate – it takes strength to be gentle and kind.”
~Steven Patrick Morrissey
andrea, I agree 100% – and your dinner discussion sounds like the kind of discussion I have with my brother every Sunday morning on the way to and from church. 😀
(Only if Firefly is going to be on a network other than FOX, please! FOX is the reason it got canceled in the first place!)
Heads up, folks:
In all this discussion about whether or not something “alters body chemistry” I think it would be wise for people to define just what precisely they MEAN by the phrase.
Judging by the posts thus far, we are heading into dialog quick-sand because people are meaning different things by that wording.
For example, the development of antibodies is not the same kind of biochemical reaction as is (for a random example), dosing with a beta-blocker. In the widest sense, even ingesting dihydrogenmonoxide will “alter body chemistry”, as it affects electrolyte balance (and can create toxic reactions with high doses); even crying will affect the body chemistry through reactions by the nervous system and glands.
There are a number of different kinds of physiological pathways being described here under that phrase, with differing types of reactions: temporary, permanent, materials used in preventative ways vs materials used reactively in treatment, materials that are biomimetic or not …
andrea
The Geiers are not the only to have raised the testerone issue: Consider also the research done and being done by Baron-Cohen of the Autism Research Centre.
Thats true Kristina and I’ve actually been in email conversation with Professor Baron-Cohen over this issue – however the ARC research has a vastly different impetus and direction, concentrating on pre-birth connections and they’re _definitely_ not trying Lupron. His exact quote after I pointed him to both Kathleen’s piece and the Geiers paper was: _”this is worrying.”_
Andrea and Jannalou,
I know you both did your duty as a Brown Coat and went to see Serenity!? I did, but it was nowhere near as good as even one episode of the series.
zai jian
wan an
BC
I loved the movie; saw it twice in the theatres (my brother saw it three times in the theatres).
First time was opening night; I went with my brother and his buddies. We sang “The Hero of Canton” and the theme song in the theatre before the movie started. It was fun but incredibly odd!
I wrote a letter to Joss about Gifted; I’ve posted it at my LiveJournal blog. Feel free to go read it – and leave a comment if you like!
My son’s therapist told me that while she was in grad school, she had to do gather literature on chelation being used on autistic children. She said (and I can only tell you what she found, not me) that most of the “professionals” (not even sure if she said they are actual physicians or not) doing the chelation aren’t charging these families, and if you dig a little deeper you will find that it’s because they are actually using these kids in studies. Not research studies about the effects so much, but studies on how many families are willing to try this process. Anyone heard this before? Are they then going to come back later and say that “most families have tried this……” Just curious………
If those studies were done in a university environment, they would have to adhere to some “Human Subject” rules. You would be able to find the researcher, and get to see results if they were published.
For medical studies, there is no charge, but there are lots of forms and checking for adherence to the rules.
For other studies, there is often a case of interviews and form filling that can be very extensive. I live near a large research university, and all three kids have been subjects. From see how well a vision test using black and white lines works with infants and toddlers, to seeing what the memory of a toddler is to toys that change from the day before (only one my daughter was in), to how a “normal” preschooler responds to a proposed test for autism (“normal” younger son)… to the most extensive… middle school survival (middle child). The latter has a websige, which you can see what happens with that kind of study:
http://depts.washington.edu/pathways/page2.html
To find the last study page, I first tried Google, but since it is referenced elsewhere I could not find what I wanted (plus it shared a name with other programs). I went to the university’s search page to find their webpage. What you need to do is find our WHICH university your therapist went to, and see if you can find out about the study with its search page.
Good luck.