, after the ribbings I have gotten from certain neurodiversity bloggers about
GI disease and autism.
I still think that would be a great name for a blog,if anybody wants to use it.
I do have a diagnosis,and because of all of the autism frauds out there,it seems you always have to prove yourself,and put all of your cards on the table.I had planned to put all of my valid medical records about autism,folate metabolism,methylation,and porphyrins up as .pdf files,but Google/Blogger doesn't seem to allow you to upload.pdfs that easily.I have also had a number of people warn me against doing this,even though the files have no SSNs or really sensisitive information on them.
That said,I am well on the way to being completely recovered from my autism,as long as I avoid casein,and take all of this crap:
*Folinic acid,as prescription leucovor 20mg a day
*Tischcon CoQ10 200mg a day
(I have been found to have secondary mitochondrial "damage",and have many of the same symptoms,as primary mito,including regular "mito crashes".)
*Vitamin D3 5000 IU a day
*Heavy Metal Detox,maintenence dose of 50 drops once a day.
*Glutathione 1 gram a day.
*MB12 as spray or drops 25 mg a day.
*L-carnititine 500-100mg a day.
*HLC Mindlinx,and digestive enzymes that I basically pop like candy.
*Omega 3 fish oil 12 grams a day
Because of malabsorption,and inefficeint metabolism,fish oil often only works if you use it in large doses.It does not cause diarrhea if you need such high doses in the first place.
But I am still very sick from my GI ,metabolic,and immune problems.Which is why I would like to take this opportunity to apologize to all of the neurodiversity bloggers whose blogs I railed so much at about "comorbid conditions".They were right,I was wrong.I now can see
When it comes to autism...
Everything is comorbid...ESPECIALLY THE AUTISM ITSELF.
My recovery is so great,even at my age,that I can say that almost anybody can recover from their autism,even the most severe cases.I also know from all the various Yahoo! groups I belong to,that biomed,as great as it is,only seems to cure the autism itself...exactly what neurodiversity types say cannot be cured.I have talked with parents whose autistic children are intellectually disabled,who have been "cured" with biomed.
They are still intellectually disabled,but they are no longer austisic.
As great as biomed is,and as much as mainstream science wants to deny it works,it does have its limitations.It seems to be a victim of its own success.There are biomed parents who are now planning what colleges to send their children to,when they had been told to plan to send their children to group homes instead.They are lucky ones.Those of us who aren't so lucky are facing a new problem:
What happens after the autism goes away,and you or your child are still sick?
While I realize there are exceptions,many DAN!s seen unprepared about what to do in such a siutation,which is where I find myself.
I'm an old fart.I was born on July 8,1960.It is highly possible I was exposed to mercury in the womb,as my mother has told me she had her first fillings when she was fourteen years old.When I was five months old,I had acute bacterial meningitis,with pulmonary complications,possibly pneumonia,as my mother said I was in an iron lung much of this time.As with all of the children,whose parents claim were vaccine-injured,my mother said I went into the hospital a different baby than when I came out.I had serious developmental problems right from the start.I could not walk until I was about three.I had many severe apraxias,and was never was able to do simple things,like catch a ball,or ride a bicycle.I was in diapers until I was nine years old,and when I wasn't deathly ill from one infection or another,I spent most of my time eloping, head banging,or smashing things.Based on what has happened to me in the past year or so,I can say that much of this behaviour was due to food reactions, although nobody knew this at the time.Because as with more recent episodes that I can clearly trace to food,they were always accompanied by gastrointestinal pain,and abnormal BMs.I always came around hours later,or the next day,with no idea what I had done,or in the case of my eloping,where I was.
Like my friend Johnathan Mitchell,I was kicked out of a couple of kindergartens,but it never seemed to bother me.I was too busy running around naked,excessively stimming,and smashing stuff to let anything bother me.I was well into second grade, when it finally dawned on me you aren't supposed to take your clothes off in school.
Like most autistics,I spent most of my time in and out of special education.In the 60s,and 70s,special ed was even more of a dumping ground for behavioural problems,and criminals in training,than it is now.When I wasn't busy seeing psychiatrists in school,I was mostly eloping/wandering around the school property.It was amazing,that you could say you had to go take a leak,and could just start wandering around the property to your heart's content,and nobody hardly noticed or cared.
I have no idea exactly what psychiatric diagnoses I received when I was in school.The Baltimore County school system has a policy of destroying every student's records,other than grades,as soon as they graduate,but obviously I did have a diagnosis,because when I was in sixth grade,and observed head banging,there was an effort by the school to put me away at the (in)famous Rosewood Center.I would have ended up rotting there,had my mother not stepped in,and fought the school on my behalf.
Starting in about the fourth grade,when it became clear that I wasn't just slacking off,and I really couldn't hold a pencil,and write,I started having intensive occupational therapy that lasted into middle school.I had no friends in any of the teachers,and I certainly could have used some.All of my teachers,from kindergarten to high school said they were afraid of me.
In school,I was always getting beat up,and my stuff stolen.When I was nine,and my parents got divorced,and yes I was a major factor,we moved to a house on the border of the woods next to Liberty Reservoir.The neighbors there made our life even worse than the kids in school did,and once they tried to kill me with their hunting rifles.It was like living in the middle of "Deliverance",or a Stephen King novel.Not the ideal place for an autistic kid.
I have had gastrointestinal problems my entire life.Notice I didn't say
"bowel disease",and on those occasions when my mother gave me enemas,and forced me to sit me directly on the toilet,my BMs always stopped up the plumbing they were so large.At the age of thirteen,the nature of my problems switched from impaction to malabsorption.At the age of seven,I had rheumatic fever,and began having chronic problems from this eleven years later. Evidence of rheumatic heart disease was found in my early twenties,but the hospital did not inform me of it for nearly twenty years later.
From the age of seventeen to twenty two,I had pneumonia five times.For a while,my lung disease was so severe,that the combination of it,and my GI disease led my doctors to think I might have cystic fibrosis,a common differential diagnosis in autistic kids with both GI,and immune related lung disease.
But of course I didn't have CF,or any other disease the hospital could readily find,so given the nature of my autism,I was thought to be Schizoid,a fairly common misdiagnosis,given what the DSM says about it.It took me until 2008,to finally get my official autism diagnosis ,and the doctor who ordered the evaluation said he was doing it to prove me wrong,because he "didn't think I had autism" either.In weeks,I went from not having a diagnosis,to once again having a diagnosis so severe,I was put on the fast track to a state-run group home,and once again having my mother intervene to keep me out.
I got my autism diagnosis about a year into one of the worst regressions of my life,after yet another acute case of bacterial meningitis.Prior to this,I had experienced several years of quasi-recovery. I had improved,but not truly recovered from my autism,which I now know to be possible only with biomedical treatment.I knew I probably had a diagnosis,but wasn't all that concerned with getting one,and wanted to just put all this autism crap behind me.
Then I got sick.
Like a lot of people,with autism of an immune,metabolic,or mitochondrial basis,my autism had reverted to the most severe point where it was when I was a child,but I had maintained my adult intelligence.I was an innocent babe as far as all that had happened with regards to autism in the intervening years,especially on the web.I knew there must be places out there where all of the issues I was facing were being discussed,and dealt with. I knew there were places where parents of children congregated,but I wanted to know how adults dealt with issues like head banging, self-mutilation,rocking,elopement,and excessive vocal stimming,like I was dealing with.
The first places I ended up were autistics.org,and Aspies for Freedom.When I started posting about problems of a nature like this,I completely bewildered by the response I had gotten.I had caused a real uproar.People were angry at me.They said I was painting an unrealistic picture of autism.That I was saying it was worse that it really was.That I was trying to scare them into wanting a cure.So I was quickly banned from both places,and they went back to talking about what they were going to do for Autism Pride Day.
The idea that autism was something to be celebrated,and made your life a better one was completely alien to me.It was,and is,the nuttiest thing I had ever heard of.These people don't say they're from the "Wrong Planet" for nothing.It took me a couple of years to really try to grasp the mindset behind it,and once I did,I realized how truly dangerous,and antiprogress these people really are.
Neurodiversity has taken Theresa Binstock's "gotta be genetic" fallacy,and carried it to its most extreme conclusion.
Neurodiversity has taken this lie,that in the dozen or so years since Binstock made the observation,has been completely disproven,and built their own bigger lie around it.Central to neurodiversity,is the belief that
YOU ARE YOUR AUTISM.
Your autism is not a medical condition that happens to effect the brain,the way epilepsy,or Alzheimer's is,no your autism is YOU.Treat any part of it,especially medically,and you destroy the person.Neurodiversity bloggers can make all the noise they want about this or that biomedical treatment being "unscientific",or "unproven",but deep down this is the real reason they oppose it all.
This is neurodiversity's "big lie".One that I know any of the many parents who have used DAN! or biomedical treatments on their children with Down syndrome,cerebral palsy,or cystic fibrosis would be glad to take up with you.By extension,any autistic who chooses to treat any part of their autism medically is filled with self-hatred,and needs to seek psychiatric help for it.
The neurodiversity bloggers,diagnosed,and otherwise,need to realize that biomedical treatment for autism is here to stay,and it works.The studies coming down from on high,verifying the "science" of it are never going to magically appear,like manna from heaven.What you are probably going to see is that more and more mainstream doctors,and psychiatrists begrudgedly saying that autism is not "hard wired" into the brain after all.That the chelation,the supplement cocktails,and the hyperbarics do work for reversing or "curing" autism,"we don't know why this stuff works but it does",or some such variant is what you are going to be hearing.And neurodiversity will start sounding more and more like the activists who oppose giving children cochlear implants,on the grounds that it poses a threat to "deaf cuture".People who think they are doing something to better the lot of disabled people,but in the end,are just talking a lot,and not saying anything that really matters to people with autism,who truly want to improve their lives.
"Neurodiversity is a religious cult. That pretty much says it all.
I tend to think of it more in the way we think of fever. I think this is a collection of many, many different disorders. And part of the reason why you see so much polarization in the community is because there is a tendency for people to think that their experience is the same as everybody else with a child with autism.
It’s quite believable to me that there are many children who develop autism in the context of having severe gut pathology, of having autoimmune problems, of having lots of other problems. And some of these kids really do recover. And that is quite different from the autism that was originally described in the 1940s and 50s - where it looks like you have it and you are going to have it for the rest of your life. And at that point, it’s a disorder that is mostly manifest by these huge social deficits.
Smashing the spectrum
No we can't all get along.
Dr.Thomas Insell is right.The idea that someone who is an expert about
"Doctor Who","Star Trek",or paleontology,and may just also happen to be a social cripple,can have the same disease as someone with severe intellectual disabilites,or that either of these people can have the same condition as someone whose "autistc symptoms" are central to a metabolic,mitochondrial,or autoimmune complex,makes about as much sense as saying that a person who has bacterial pneumonia has the same condition as as a person with Dengue fever,because both can cause a fever.We need to stop this silly game NOW.Ari Ne'eman is not Conor Doherty,is not Hannah Poling,we need to stop pretending that they are.
We need to tear down the entire classification system for ASDs,and rebuild it from the ground up.
I propose something entirely different from what the Amererican Psychiatric Association has. It may not be that there is an "autism epidemic",after all.It may just be that there are too many different conditions,that have been tossed into the
jumbo dump trailer called "autism", and it's time to empty the whole thing.To that end I offer two entirely different solutions,neither of which the APA is going to pay the slightest attention to.
1) Keep Asperger's the way it is,fold the milder PDD diagnoses into Asperger's,take it out of the ASD classification,and make it its own distinct personality disorder.Then take the "autism" or "features of autism" cases with key metabolic/mitochondrial, autoimmune,and GI disease elements out of the autism classification entirely,and reclassify them as a new syndrome.Then work on reclassifying those with primarily intellectual disabilities and "autism" as having something else entirely.
There are certain very corrupt high profile organizations,that neither neurodiversity, nor the pro-cure people esecially like all that much,who would scream bloody murder if the "autism" cash cow they use to fleece desperate parents and well meaning fundraisers out of millions of dollars,was taken away from them,but they are standing in the way of progress as much as neurodiversity is,and need to be taken down.There are a lot of ways of doing this.
2)Sit down an make up a list of all of the "comorbid" conditions that occur with "autism",then go to the DSM diagnotic citeria,and see if any of the following are listed:
Autistic regression,especially repeated regressions triggered by food reactions or immune crises, intellectual disability (AKA "mental retardation".),inabilty to speak,with or without ID, nonverbal learning disabilities,developmental delay,ideomotor,limb-kinetic,verbal,buccofacial, ideatioal,costructional,and oculomotor apraxias,aggression and violence towards others,property destruction,self-abuse,eloping or wandering,GI disease, metabolic/methylation,or mitochondrial disorders,autoimmune disorders, seizures,and a high frequency of systemic fungal/yeast infections.
No they are not.Yet if you,or your child are autistic,and complain about any of these things to your doctor,the chances are very good,the doctor will just shrug his shoulders,and say it's "just part of the autism","we don't know why but it just is."
OK,so if these things really ARE "just part of autism" then MAKE them just that.Add all of these to the official diagnosis.Make it so that,in addition to the existing criteria, you would have to have at least three or more of these conditions to have ANY condition even remotely connected to autism.
Then we could really see if there was an "autism epidemic" after all.
Vaccines maybe not that much
You will get no argument from me that mercury causes autism,but maybe we have been looking for most of it in the wrong place all along.
What if it isn't something injected into our children,but something mothers are taking into their bodies while carrying their babies? What if vaccines were only a TRIGGER ,and the majority of the damage had already been done in the womb? There are two possible sources,fillings and fructose.
Antivaccine types like to talk about the "autism epidemic" starting with the MMR jab,but what if it really goes back to ,the 1985 "New Coke" disaster,and the reintrodution of "Coca-Cola Classic"?
This was really the first widespread use of high fructose corn syrup in a widely used commercial product.High fructose corn syrup is chock full of mercury.
Almost half of tested samples of commercial high-fructose corn syrup (HFCS) contained mercury, which was also found in nearly a third of 55 popular brand-name food and beverage products where HFCS is the first- or second-highest labeled ingredient, according to two new U.S. studies.
HFCS has replaced sugar as the sweetener in many beverages and foods such as breads, cereals,breakfast bars, lunch meats, yogurts, soups and condiments. On average, Americans consume about 12 teaspoons per day of HFCS, but teens and other high consumers can take in 80 percent more HFCS than average.
"Mercury is toxic in all its forms. Given how much high-fructose corn syrup is consumed by children,it could be a significant additional source of mercury never before considered. We are calling for immediate changes by industry and the [U.S. Food and Drug Administration] to help stop this avoidable mercury contamination of the food supply," the Institute for Agriculture and Trade Policy's Dr. David Wallinga, a co-author of both studies, said in a prepared statement.
In the first study, published in current issue of Environmental Health, researchers found detectable levels of mercury in nine of 20 samples of commercial HFCS.
And in the second study, the Institute for Agriculture and Trade Policy
(IATP), a non-profit watchdog group, found that nearly one in three of 55 brand-name foods contained mercury. The chemical was found most commonly in HFCS-containing dairy products, dressings and condiments.
The question is,how much HFCS would a pregnant mother have to consume before she puts her baby at risk for autism? The study on mercury and dental fillings,shows ths depends on how many fillings she has. So the amount taken in should also hold true for HFCS.
Among the study subjects, the highest exposures to mercury from maternal dental amalgams during pregnancy were associated with an increased risk of being diagnosed with autism (severe clinical symptoms), in comparison to an ASD (mild clinical symptoms). Furthermore, the risk of increasing autism severity became significantly manifest among those study subjects with 6 or more maternal dental amalgams during pregnancy in comparison to those study subjects with 5 or fewer maternal dental amalgams during pregnancy. While other potential confounding factors in the present study such as: race, age, gender, and region of residency were examined in statistical modeling, these factors did not account for the adverse effects of mercury exposure from maternal dental amalgams during pregnancy on the offspring observed in the present study.
Holmes and coauthors (2003) examined prenatal sources of mercury exposure
among patients diagnosed with autism in comparison to matched controls. It was observed that patients diagnosed with autism (8.35 ± 3.43) had exposure from significantly increased numbers of maternal dental amalgams during pregnancy than controls (6.60 ± 3.55).In contrast, Adams and others (2008) observed that patients diagnosed with autism (5.5 ± 4.2) had similar numbers of maternal dental amalgams during pregnancy as matched controls (6.6 ± 3.6).
Mercury taken in by the mother has been shown to be present in the baby at birth,as well as being present in breast milk.
Also, mercury from maternal amalgam fillings leads to a significant increase of mercury concentration in the tissues and the hair of fetuses and newborn children. Furthermore, placental, fetal, and infant mercury body burden correlates with the numbers of amalgam fillings of the mothers (Mutter et al. 2007, Palkovicova et al. 2008). Finally, mercury levels in amniotic fluid and breast milk correlate significantly with the number of maternal dental amalgam fillings (Mutter et al. 2007).
------------------------------------------------------------------------------------- Placental to Fetal Transfer of Mercury and Fetotoxicity
1) Department of Chemistry, St. Marianna University School of Medicine
(Received December 12, 2001)
(Revision accepted for publication February 28, 2002)
Mercury vapor is known penetrate the placental barrier more easily than inorganic mercury. A relative amount of mercury accumulates in the fetus after exposure of pregnant animals to mercury vapor. Mercury concentration in fetal organs is much lower than that in maternal organs except the liver, and fetal liver shows significantly higher mercury concentrations than maternal liver. In fetal liver, a substantial portion of mercury is bound to metallothionein (MT), which plays an important role as a reservoir of mercury during the prenatal period. The mercury retained in fetal liver is redistributed to other organs, such as the brain and kidney, with diminishing MT levels during postnatal development. Consequently, an increase in mercury concentration in the brain and kidney of the neonate is observed. In studies on animal offspring in utero exposed to mercury vapor, behavioral changes, such as radial arm maze, morris maze and lever-press durations, are observed when the levels of mercury vapor exceed the threshold limit value (TLV).
Maybe these kids had already gotten so much mercury in the womb,that the vaccines were only a trigger,and not a cause.Greening our vaccines is a good idea,but maybe we ought to worry more about greening our sodas,jellies,and teriyaki sauces for now.The same goes for discouraging girls and women of childbearing age from getting amalgam fillings.Worrying about vaccines may be like being concerned about smoke damage to the upholstery of your car when your house is on fire.
It's also possible that the amalgam study was ignored because it was from the Geiers, who were tainted by the Lupron disaster,but replicating it should be easy enough.Has anybody looked into the rates of autism among Orthodox Jews,who obey strict rules of Kashrut ?Everybody knows about "Kosher Coke" by now,so they obviously avoid HFCS as much as possible.Given the lack of coverage these studies have gotten from people like David Kirby,and the folks at Age,you do have to wonder why they would have ignored them. The neurodiversity types who claim it's a one-sided vendetta against vaccine makers may have a point here.
Autism activism,and autism treatment,be it from the neurodiversity side or the biomedical side is largely emotional,and comes from the gut.While this is to be expected,it usually prevents you from looking at the big picture,and seeing things rationally.And yes,both sides have their share of wackos.Neither has a monopoly on the truth.
I will never forget the first time I encountered a really zealous biomed mother in one of my Yahoo! groups.This woman was complaining about how no DAN! doctor would see her,or her child.She was not about to bother with a piddling little formality,like getting her child diagnosed, let alone finding out if her child needed the treatments,she knew her child was autistic.She wanted him treated with everything,and wanted it done now !To their credit,no DAN! would treat her,but it just proves how too many biomed parents race headlong into this stuff without first learning what their child's needs are.
As successful as biomed has been for me,I would not recommend anybody go ahead with it,until you have had these tests.Nor would I suggest you use just any chelator.Most of the advocates of strong chelators,like ALA,DMPS,or DMSA,have no idea just how fragile our bodies can be.The Cutler protocol,used by most parents and doctors,was designed for adults with amalgam fillings,who were otherwise healthy,and genetically normal.Malabsorption,immune problems, metatabolic disease,and nutritional deficiencies can all impact the way chelation works,yet this is rarely taken into consideration by doctors and parents,who advocate a one-size-fits-all approach to chelation.Chelation doesn't kill,ignorant parents and practitioners do.I was lucky that I found one of the few DAN! doctors that understood this.
Chelation,MB12,and folinic acid were key parts of my recovery,but not until I had gone to a DAN!,had the right tests done and learned just why I needed to take this stuff in the first place. The first tests he gave me were to find out if I had high porphyrins,COMT mutations,also found in schizophrenia (I have both COMT1,and COMT2 mutations.),
errors of folate metabolism (It just so happens I have both C677T and A1298C mutations as well.),homocysteinemia,and megaloblastic anemia.Basically he found I had the whole metabolic picture.This in someome waaay too old to have gotten the MMR vaccine.
So,is autism a metabolic disease?In many cases,I would say it is.My autism,my immune problems,my lack of muscle development,and my unexplained hyopogonadism,are probably all metabolic in nature.And we have just begun to find all of the metabolic defects that are involved with autism.This woman might agree with me. Hell,some forms of autism might even be related to neural tube defects,or Down Sndrome,considering all three can involve the same genes.
This raises a great many questions that nobody bothered to ask before.Is this a case of "dysfunction",or of actual mutations,as it is with mitochondria?Certainly as many autistic children and adults need to be tested for these mutations as possible.Assuming the mothers who had these children all took folate and B vitamin supplements while they were pregnant, there was some obvious reason it was not reaching their babies.Was the mother excreting them in her urine,was there some sort of ineffcient metabolism involved with both the mother and the baby? These are the sort of questions we need to be asking instead of going over the same well worn ground about vaccines.The parents and doctors who see patients with Down Syndrome,might be able to provide some of these answers,but they are not coming forward.The example of mitochondrial disease,and autism,gives us some idea why.
It has been over a year,since mitochondrial disease has been officially recognized to exist with autism, but there has been little outreach from mainstream mito groups and doctors.I know from writing to such people through the Yahoo! group,these people are very conservative in their views about medicine and science.They are put off by what they see as the zealotry,and inflexibility of the autism people to blame everything on vaccines,with an unwillingness to look for explanations elsewhere,and to make up all sorts of wild conspiracy theories instead.So they think they are just a bunch of crazies on a vendetta against vaccine makers,who care more about this than they do their children.This may not be the truth,but it is the perception. Until everybody takes a step back,and reasses the way they see this problem, we are never going to make any further progress.