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Roger Kulp
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Roger Kulp commented on a post on Blogger.
Tell me more about the connection between vitamin D and folate-B12 metabolism.

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Roger Kulp commented on a post on Blogger.
Two things to consider.
This study is out of Egypt.A quick internet search will tell you  Egypt has a big problem with water pollution.Those who can afford to do so drink primarily purified bottled water.The Nile,and other primary sources of water for much of Egypt,is heavily polluted with heavy metals,mostly from industrial and agricultural discharge.
See here
http://savethewater.org/2014/04/10/egypt-and-water-pollution/
Here
http://slwater.iwmi.org/sites/default/files/DocumentRoot/heavy%20metal.pdf
And here
https://sites.google.com/a/stemegypt.edu.eg/2015-1-41/
etc.

Too little attention is paid to the role that the increased number of toxic chemicals children are exposed to in the womb,and in early development,might play in an increase in autism.

Also,this is autism we are talking about.Abnormalities in folate and B12 are a big part of autism.Abnormalities in B12 mean abmormallities in heme.This usually means elevated porphyrins.
http://www.org-chem.org/yuuki/porphyrin/porphyrin.html
http://www.chm.bris.ac.uk/motm/vitaminb12/structure.html

When I first started down this road to getting a medical diagnosis besides autism, my only option in getting any medical care meant I had to start with a doctor that was very antivaccine.Of course,this meant one of the many dozen of tests I had were for porphyrins.They were off the charts.It was suggested I undergo extensive chelation.I did not.Fortunately,this doctor also did the tests that found Severe MTHFR Deficiency,and acute megaloblastic anemia.Three years later,I tested positive for FRAs.It took years of treatment of the folate and B12 stuff to get my porphyrins down below normal.I have met too many autism parents online,who have said their child was told they had "metals",just on the basis of a high porphyrin test,and nothing else.

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Roger Kulp commented on a post on Blogger.
I should think it would be very interesting to see if you could connect autism due to maternal autoantibodies to autism due to PANDAS and PANS.Or if MAR related autism would respond to IVIG or other treatments for autoimmune disease.Do families of children with MAR autism have histories of autoimmune disease,the way families of children with PANDAS and PANS do?I also can't help but wonder if autism due to folate receptor autoantibodies might be considered a type of MAR autism.Just a few areas of possible research in this all too new subtype of autism.

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Roger Kulp commented on a post on Blogger.
As the saying goes,not all that seizes is epilepsy,especially if the seizures respond to changes in diet,or treatment of metabolic disorders.

There is evidence that treating coeliac disease can stop seizures/epilepsy.
http://www.pedneur.com/article/S0887-8994(05)00265-1/abstract?cc=y=

And that gluten consumption in people with gluten sensitivity can lead to seizures.
https://www.glutenfreesociety.org/leaky-brain-seizures-epilepsy-gluten-sensitivity/

As far as epilepsy begets autism,seizures are common triggers of autistic  regression,as we all know,especially where  there are underlying inborn metabolic and immune disorders.Something I know all too well about.In a lot of cases,you will find,a GFCF diet is started before,or at the same time when metabolic disorders are discovered,so it may be a little hard to tell which of these interventions reduced the seizures,without eliminating one of the treatments.

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Roger Kulp commented on a post on Blogger.
Does  anybody know what per centage of those with autism have actual diagnosed coeliac.like I do?

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Roger Kulp commented on a post on Blogger.
Paul's story sounds all too familiar.I wonder if he had some kind of infection as a result of his accident.I know regressive autism is poorly studied,and I don't know what the scientific consensus has been on regressive autism,if indeed there is any,but did they used to they used to think autistic regression was a one time thing?

My life was an ongoing cycle of autistic regression,some recovery and improvement,severe illness,then another regression.This was the case from the time I was an older infant,and suffered my initial regression,right up until my cerebral folate deficiency,from folate receptor autoantibodies,megaloblastic anemia,and Severe MTHFR Deficiency,and Homocystinuria were discovered in my late forties.I would go on to have tests that showed I had mitochondrial over function,and mutations for an extremely rare disease,previously unknown with autism,that can both involve the brain,and cause a cellular or innate immune deficiency.

Autistic regression is an ongoing and lifelong thing.It is probably due,in most cases,to underlying metabolic/mitochondrial or immune disorders.Regressions will continue to happen,if these underlying disorders are not treated.This is the one thing I would like researchers,clinicians,and parents to understand about regressive autism.

I think had more research been done about regressive autism years and years ago,doctors could have told parents why their child regressed after a vaccine induced fever,and Andrew Wakefield's future would have been very different.

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Roger Kulp commented on a post on Blogger.
And then there is early regression VS later regression.I categorize early  regression,as happening in an older infant,before the age of one year.This has both been documented,and was what my mother said happened to me,following an acute case of meningitis.Since regressions,and I mean multiple regressions in the same individual,are often only seen in autism with underlying metabolic/mitochondrial and immune disorders,is it safe to say regression only occurs in syndromic forms of autism?

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Roger Kulp commented on a post on Blogger.
I've been on my own personal journey down this road the last few months,and it's been quite a learning experience.Of course there were the folate receptor autoantibodies,and the MTHFR Deficiency,but that never explained all of my other medical issues.After I finally got a whole exome sequencing last year,I learned I had pathogenic MRE11a mutations.I have spent the last few months learning everything I can about this gene,and contacting researchers in four of the five main countries where the research has been done on the gene,most recently Saudi Arabia.I still do not know if what I have would be from a novel expression of the gene as a cancer gene,or as a unique type of Ataxia telangiectasia-like disorder.The latter disease having never been documented in a US patient before.Whatever it is,it is unique,and a lot more than autism.The researchers I have contacted outside the US have all urged me to try and get my case evaluated  and documented,but finding someone in the USA  to do this has been very difficult.I think cases like mine will become more and more common,especially with syndromic autism.I don't think doctors are really ready for such patients,and do not know what to do with them.Such patients do not readily fit into existing pigeonholes doctors like to put patients in.

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Roger Kulp commented on a post on Blogger.
It is kind of silly that these studies should still have to be done.Vitamin D,folate,B12 and related metabolites,tetrahydrobiopterin levels.These were the kind of tests DAN! doctors were routinely giving to children and adults with autism a decade or more ago.They were in the very first round of tests I ever received when I started with a DAN! doctor in 2009.Putting aside the antivaccine stuff,DAN! doctors were the only ones testing for any comorbid and underlying medical conditions.I wonder how many others started with these doctors,and also started on a diagnostic path to a real genetic disorder "regular" doctors could not or would not look for.Genetic testing is so important as well. I think we ought to take things to the next level as far as testing is concerned.I would like to see routine whole exome sequencing  for everyone with an autism diagnosis.
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