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Re: [Mito] New to group,ASD,many diagnoses,not mito...yet

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  • David Staup
    Roger it depends on the doctor and how long you have to wait for your apt. Talk to your doctors. If the wait is long you may be able to start some now and
    Message 1 of 10 , Mar 30, 2013
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      Roger it depends on the doctor and how long you have to wait for your apt.  Talk to your doctors. If the wait is long you may be able to start some now and stop them prior to testing. Certainly the B vitamins B2 and niacinamide are worth testing individually and are water soluble and not stored.
      But ask the doctor or nurse first.
       
      David
      On 3/29/2013 9:40 PM, Roger Kulp wrote:
       

      I know there must be other people out there like me,but in over six years of being in internet autism groups,I have yet to find anybody quite like me,especially in my age group.I was diagnosed with autism originally in an elementary school setting.I was diagnosed under the criteria in the DSM-II with childhood schizophrenia.I had so much going on besides autism.All sorts of medical problems,and nonverbal developmental delays,severe problems with motor coordination,and learning disabilities.It was a very different world when I was a child.There was so much that nobody knew,and autism was blamed on "refrigerator mothers".

       

      I was born blind in my left eye.I had a condition known as pseudohypogonaism,meaning serious problems in sexual development with normal hormone levels.As I got older,I also found I would never develop any adult muscles,and my bones are about one third the size of a normal adult male.

       

      I struggled for decades with all sorts of medical problems,including heart failure and conduction defects,severe GI disease,atypical seizures,vasculitis,chronic lung infections,multiple bouts of meningitis,regression after regression,and since 2010 kidney problems.Nobody was able to find any cause.Then in 2009,I started seeing a local DAN! doctor,who started doing all sorts of tests.We found that I had all sorts of serious problems with folate metabolism.I was found to have conditions that have all the features of both MTHFR deficiency,and Methylmalonic Acidemia with Homocystinuria Cobalamin C.I could be diagnosed with either,except my numbers are not high enough.

       

      I was started on leucovorin,and right away my seizures stopped.Then my autism started to improve.I started upping the dose of leucovorin with more and more improvements.Eventually my autism was gone,as long I stayed on the leucovorin,and kept off dairy,but I still had a lot of unexplained medical problems.Last year,after three years on leucovorin,and months on a dairy free diet,I tested positive for both the binding and blocking folate autoantibodies.

       

      If you know anything about cerebral folate deficiency syndrome and autism,you know it does not occur alone.There is always another metabolic disease that goes along with it,usually mitochondrial disease.I am still not sure which one is the primary condition.My guess is the CFD is secondary.

       

      In January,I went to California,and saw Dr.Rossignol.He told me that he believed I probably do have mito,as well as CFDS.I learned all about the secondary organic acidemias in mitochondrial disease,how mito and GI disease can work together to cause a lack of muscle development in your teens.He told me that I was one of the more complicated mito/metabolic cases of autism he has seen.He said that I needed a real workup at a hospital where they really understood this stuff,and that meant Arkansas Children's.Dr.Frye is very interested in seeing me now.However,even though Dr.Frye and Dr.Rossignol are close colleagues,I still had to go to the very bottom of the waiting list.

       

      I don't know if I should start treating myself with the cocktail,before I get my workup for mito or not.

       

      Roger 


    • Heal1child
      Roger Amazing you survived untreated all these years! You probably could write a book that would be so helpful, for so many looking thru the eyes and mind of
      Message 2 of 10 , Apr 1, 2013
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        Roger
        Amazing you survived untreated all these years! You probably could write a book that would be so helpful, for so many looking thru the eyes and mind of someone who knows what its like locked inside!! Your mind is amazing and your writing skills are impressive.

        I think you should do the mito cocktail, for many reasons. See if you continue to improve
        and feel better. And its not going to change your DNA.
        Do it!
        Also I am honored to have read your post today.
        Allie

        --- In Mito@yahoogroups.com, Roger Kulp <leucovorinsaves@...> wrote:
        >
        > I know there must be other people out there like me,but in over six years of being in internet autism groups,I have yet to find anybody quite like me,especially in my age group.I was diagnosed with autism originally in an elementary school setting.I was diagnosed under the criteria in the DSM-II with childhood schizophrenia.I had so much going on besides autism.All sorts of medical problems,and nonverbal developmental delays,severe problems with motor coordination,and learning disabilities.It was a very different world when I was a child.There was so much that nobody knew,and autism was blamed on "refrigerator mothers". I was born blind in my left eye.I had a condition known as pseudohypogonaism,meaning serious problems in sexual development with normal hormone levels.As I got older,I also found I would never develop any adult muscles,and my bones are about one third the size of a normal adult male. I struggled for decades with all sorts of medical problems,including heart failure and conduction defects,severe GI disease,atypical seizures,vasculitis,chronic lung infections,multiple bouts of meningitis,regression after regression,and since 2010 kidney problems.Nobody was able to find any cause.Then in 2009,I started seeing a local DAN! doctor,who started doing all sorts of tests.We found that I had all sorts of serious problems with folate metabolism.I was found to have conditions that have all the features of both MTHFR deficiency,and Methylmalonic Acidemia with Homocystinuria Cobalamin C.I could be diagnosed with either,except my numbers are not high enough. I was started on leucovorin,and right away my seizures stopped.Then my autism started to improve.I started upping the dose of leucovorin with more and more improvements.Eventually my autism was gone,as long I stayed on the leucovorin,and kept off dairy,but I still had a lot of unexplained medical problems.Last year,after three years on leucovorin,and months on a dairy free diet,I tested positive for both the binding and blocking folate autoantibodies. If you know anything about cerebral folate deficiency syndrome and autism,you know it does not occur alone.There is always another metabolic disease that goes along with it,usually mitochondrial disease.I am still not sure which one is the primary condition.My guess is the CFD is secondary. In January,I went to California,and saw Dr.Rossignol.He told me that he believed I probably do have mito,as well as CFDS.I learned all about the secondary organic acidemias in mitochondrial disease,how mito and GI disease can work together to cause a lack of muscle development in your teens.He told me that I was one of the more complicated mito/metabolic cases of autism he has seen.He said that I needed a real workup at a hospital where they really understood this stuff,and that meant Arkansas Children's.Dr.Frye is very interested in seeing me now.However,even though Dr.Frye and Dr.Rossignol are close colleagues,I still had to go to the very bottom of the waiting list. I don't know if I should start treating myself with the cocktail,before I get my workup for mito or not. Roger
        >
      • Anne
        Roger- could you please share what you found out abt how mito and GI issues affect muscle development? Sent from my iPhone
        Message 3 of 10 , Apr 3, 2013
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          Roger- could you please share what you found out abt how mito and GI issues affect muscle development?

          Sent from my iPhone

          On Mar 30, 2013, at 3:08 PM, David Staup <dstaup@...> wrote:

           

          Roger it depends on the doctor and how long you have to wait for your apt.  Talk to your doctors. If the wait is long you may be able to start some now and stop them prior to testing. Certainly the B vitamins B2 and niacinamide are worth testing individually and are water soluble and not stored.
          But ask the doctor or nurse first.
           
          David

          On 3/29/2013 9:40 PM, Roger Kulp wrote:
           

          I know there must be other people out there like me,but in over six years of being in internet autism groups,I have yet to find anybody quite like me,especially in my age group.I was diagnosed with autism originally in an elementary school setting.I was diagnosed under the criteria in the DSM-II with childhood schizophrenia.I had so much going on besides autism.All sorts of medical problems,and nonverbal developmental delays,severe problems with motor coordination,and learning disabilities.It was a very different world when I was a child.There was so much that nobody knew,and autism was blamed on "refrigerator mothers".

           

          I was born blind in my left eye.I had a condition known as pseudohypogonaism,meaning serious problems in sexual development with normal hormone levels.As I got older,I also found I would never develop any adult muscles,and my bones are about one third the size of a normal adult male.

           

          I struggled for decades with all sorts of medical problems,including heart failure and conduction defects,severe GI disease,atypical seizures,vasculitis,chronic lung infections,multiple bouts of meningitis,regression after regression,and since 2010 kidney problems.Nobody was able to find any cause.Then in 2009,I started seeing a local DAN! doctor,who started doing all sorts of tests.We found that I had all sorts of serious problems with folate metabolism.I was found to have conditions that have all the features of both MTHFR deficiency,and Methylmalonic Acidemia with Homocystinuria Cobalamin C.I could be diagnosed with either,except my numbers are not high enough.

           

          I was started on leucovorin,and right away my seizures stopped.Then my autism started to improve.I started upping the dose of leucovorin with more and more improvements.Eventually my autism was gone,as long I stayed on the leucovorin,and kept off dairy,but I still had a lot of unexplained medical problems.Last year,after three years on leucovorin,and months on a dairy free diet,I tested positive for both the binding and blocking folate autoantibodies.

           

          If you know anything about cerebral folate deficiency syndrome and autism,you know it does not occur alone.There is always another metabolic disease that goes along with it,usually mitochondrial disease.I am still not sure which one is the primary condition.My guess is the CFD is secondary.

           

          In January,I went to California,and saw Dr.Rossignol.He told me that he believed I probably do have mito,as well as CFDS.I learned all about the secondary organic acidemias in mitochondrial disease,how mito and GI disease can work together to cause a lack of muscle development in your teens.He told me that I was one of the more complicated mito/metabolic cases of autism he has seen.He said that I needed a real workup at a hospital where they really understood this stuff,and that meant Arkansas Children's.Dr.Frye is very interested in seeing me now.However,even though Dr.Frye and Dr.Rossignol are close colleagues,I still had to go to the very bottom of the waiting list.

           

          I don't know if I should start treating myself with the cocktail,before I get my workup for mito or not.

           

          Roger 


        • plh654
          Roger, I d be very interested in hearing abt this as well. My son has autism, mito, GI issues and low muscle tone, so very interested in what you found out
          Message 4 of 10 , Apr 4, 2013
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            Roger, I'd be very interested in hearing abt this as well. My son has autism, mito, GI issues and low muscle tone, so very interested in what you found out about muscle development.

            Thanks so much for sharing
            Pam

            --- In Mito@yahoogroups.com, Anne <AReckling@...> wrote:
            >
            > Roger- could you please share what you found out abt how mito and GI issues affect muscle development?
            >
            > Sent from my iPhone
            >
            > On Mar 30, 2013, at 3:08 PM, David Staup <dstaup@...> wrote:
            >
            > > Roger it depends on the doctor and how long you have to wait for your apt. Talk to your doctors. If the wait is long you may be able to start some now and stop them prior to testing. Certainly the B vitamins B2 and niacinamide are worth testing individually and are water soluble and not stored.
            > > But ask the doctor or nurse first.
            > >
            > > David
            > >
            > > On 3/29/2013 9:40 PM, Roger Kulp wrote:
            > >>
            > >> I know there must be other people out there like me,but in over six years of being in internet autism groups,I have yet to find anybody quite like me,especially in my age group.I was diagnosed with autism originally in an elementary school setting.I was diagnosed under the criteria in the DSM-II with childhood schizophrenia.I had so much going on besides autism.All sorts of medical problems,and nonverbal developmental delays,severe problems with motor coordination,and learning disabilities.It was a very different world when I was a child.There was so much that nobody knew,and autism was blamed on "refrigerator mothers".
            > >>
            > >>
            > >>
            > >> I was born blind in my left eye.I had a condition known as pseudohypogonaism,meaning serious problems in sexual development with normal hormone levels.As I got older,I also found I would never develop any adult muscles,and my bones are about one third the size of a normal adult male.
            > >>
            > >>
            > >>
            > >> I struggled for decades with all sorts of medical problems,including heart failure and conduction defects,severe GI disease,atypical seizures,vasculitis,chronic lung infections,multiple bouts of meningitis,regression after regression,and since 2010 kidney problems.Nobody was able to find any cause.Then in 2009,I started seeing a local DAN! doctor,who started doing all sorts of tests.We found that I had all sorts of serious problems with folate metabolism.I was found to have conditions that have all the features of both MTHFR deficiency,and Methylmalonic Acidemia with Homocystinuria Cobalamin C.I could be diagnosed with either,except my numbers are not high enough.
            > >>
            > >>
            > >>
            > >> I was started on leucovorin,and right away my seizures stopped.Then my autism started to improve.I started upping the dose of leucovorin with more and more improvements.Eventually my autism was gone,as long I stayed on the leucovorin,and kept off dairy,but I still had a lot of unexplained medical problems.Last year,after three years on leucovorin,and months on a dairy free diet,I tested positive for both the binding and blocking folate autoantibodies.
            > >>
            > >>
            > >>
            > >> If you know anything about cerebral folate deficiency syndrome and autism,you know it does not occur alone.There is always another metabolic disease that goes along with it,usually mitochondrial disease.I am still not sure which one is the primary condition.My guess is the CFD is secondary.
            > >>
            > >>
            > >>
            > >> In January,I went to California,and saw Dr.Rossignol.He told me that he believed I probably do have mito,as well as CFDS.I learned all about the secondary organic acidemias in mitochondrial disease,how mito and GI disease can work together to cause a lack of muscle development in your teens.He told me that I was one of the more complicated mito/metabolic cases of autism he has seen.He said that I needed a real workup at a hospital where they really understood this stuff,and that meant Arkansas Children's.Dr.Frye is very interested in seeing me now.However,even though Dr.Frye and Dr.Rossignol are close colleagues,I still had to go to the very bottom of the waiting list.
            > >>
            > >>
            > >>
            > >> I don't know if I should start treating myself with the cocktail,before I get my workup for mito or not.
            > >>
            > >>
            > >>
            > >> Roger
            > >>
            > >
            > >
            >
          • Roger Kulp
            I only know what I heard from Dr.Rossignol,about the interaction of mito and severe GI disease,which I have had all of my life.He said he believes that it s
            Message 5 of 10 , Apr 4, 2013
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              I only know what I  heard from Dr.Rossignol,about the interaction of mito and severe GI disease,which I have had all of my life.He said he believes that it's part of an encephalo-entero-myopathy.I don't really know yet how unusual I am.

               

              I do not have weakness or low muscle tone.I have a profound lack of muscle development,especially in my arms,chest,and abdomen,and to a lesser extent in my neck.It's very different from the usual floppiness.I have seen pictures of people who look like me who have severe muscular dystrophy.

               

              See this


               http://www.emaxhealth.com/1020/lack-muscle-development-infants-could-it-predict-autism-0

              I am hoping to get some real explanation when I finally get to Arkansas.If somebody here could give ME some clues,I would be grateful.
               
              Roger

              To: Mito@yahoogroups.com
              From: pamharris@...
              Date: Thu, 4 Apr 2013 18:58:22 +0000
              Subject: [Mito] Re: New to group,ASD,many diagnoses,not mito...yet

               

              Roger, I'd be very interested in hearing abt this as well. My son has autism, mito, GI issues and low muscle tone, so very interested in what you found out about muscle development.

              Thanks so much for sharing
              Pam

              --- In Mito@yahoogroups.com, Anne <AReckling@...> wrote:
              >
              > Roger- could you please share what you found out abt how mito and GI issues affect muscle development?
              >
              > Sent from my iPhone
              >
              > On Mar 30, 2013, at 3:08 PM, David Staup <dstaup@...> wrote:
              >
              > > Roger it depends on the doctor and how long you have to wait for your apt. Talk to your doctors. If the wait is long you may be able to start some now and stop them prior to testing. Certainly the B vitamins B2 and niacinamide are worth testing individually and are water soluble and not stored.
              > > But ask the doctor or nurse first.
              > >
              > > David
              > >
              > > On 3/29/2013 9:40 PM, Roger Kulp wrote:
              > >>
              > >> I know there must be other people out there like me,but in over six years of being in internet autism groups,I have yet to find anybody quite like me,especially in my age group.I was diagnosed with autism originally in an elementary school setting.I was diagnosed under the criteria in the DSM-II with childhood schizophrenia.I had so much going on besides autism.All sorts of medical problems,and nonverbal developmental delays,severe problems with motor coordination,and learning disabilities.It was a very different world when I was a child.There was so much that nobody knew,and autism was blamed on "refrigerator mothers".
              > >>
              > >>
              > >>
              > >> I was born blind in my left eye.I had a condition known as pseudohypogonaism,meaning serious problems in sexual development with normal hormone levels.As I got older,I also found I would never develop any adult muscles,and my bones are about one third the size of a normal adult male.
              > >>
              > >>
              > >>
              > >> I struggled for decades with all sorts of medical problems,including heart failure and conduction defects,severe GI disease,atypical seizures,vasculitis,chronic lung infections,multiple bouts of meningitis,regression after regression,and since 2010 kidney problems.Nobody was able to find any cause.Then in 2009,I started seeing a local DAN! doctor,who started doing all sorts of tests.We found that I had all sorts of serious problems with folate metabolism.I was found to have conditions that have all the features of both MTHFR deficiency,and Methylmalonic Acidemia with Homocystinuria Cobalamin C.I could be diagnosed with either,except my numbers are not high enough.
              > >>
              > >>
              > >>
              > >> I was started on leucovorin,and right away my seizures stopped.Then my autism started to improve.I started upping the dose of leucovorin with more and more improvements.Eventually my autism was gone,as long I stayed on the leucovorin,and kept off dairy,but I still had a lot of unexplained medical problems.Last year,after three years on leucovorin,and months on a dairy free diet,I tested positive for both the binding and blocking folate autoantibodies.
              > >>
              > >>
              > >>
              > >> If you know anything about cerebral folate deficiency syndrome and autism,you know it does not occur alone.There is always another metabolic disease that goes along with it,usually mitochondrial disease.I am still not sure which one is the primary condition.My guess is the CFD is secondary.
              > >>
              > >>
              > >>
              > >> In January,I went to California,and saw Dr.Rossignol.He told me that he believed I probably do have mito,as well as CFDS.I learned all about the secondary organic acidemias in mitochondrial disease,how mito and GI disease can work together to cause a lack of muscle development in your teens.He told me that I was one of the more complicated mito/metabolic cases of autism he has seen.He said that I needed a real workup at a hospital where they really understood this stuff,and that meant Arkansas Children's.Dr.Frye is very interested in seeing me now.However,even though Dr.Frye and Dr.Rossignol are close colleagues,I still had to go to the very bottom of the waiting list.
              > >>
              > >>
              > >>
              > >> I don't know if I should start treating myself with the cocktail,before I get my workup for mito or not.
              > >>
              > >>
              > >>
              > >> Roger
              > >>
              > >
              > >
              >

            • Nimmo Family
              Honestly I am glad you wrote about this, I think it would mean a great deal to my oldest son if he were to get tested for mito as well, because his laundry
              Message 6 of 10 , Apr 5, 2013
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                Honestly I am glad you wrote about this, I think it would mean a great deal to my oldest son if he were to get tested for mito as well, because his laundry list of conditions and those of his younger brother add up to what you have all rolled up into one. Isaac has high fcning autism, ADHD and Tourettes syndrome. My middle son has mito complexes I/II and III. If you found relief in the meds you described, how wonderful for my son that would be if he could be set free with the same treatment! I will look into that. Thank you again. Bless you.

                On Mar 30, 2013 11:53 AM, "Roger Kulp" <leucovorinsaves@...> wrote:


                I know there must be other people out there like me,but in over six years of being in internet autism groups,I have yet to find anybody quite like me,especially in my age group.I was diagnosed with autism originally in an elementary school setting.I was diagnosed under the criteria in the DSM-II with childhood schizophrenia.I had so much going on besides autism.All sorts of medical problems,and nonverbal developmental delays,severe problems with motor coordination,and learning disabilities.It was a very different world when I was a child.There was so much that nobody knew,and autism was blamed on "refrigerator mothers".

                 

                I was born blind in my left eye.I had a condition known as pseudohypogonaism,meaning serious problems in sexual development with normal hormone levels.As I got older,I also found I would never develop any adult muscles,and my bones are about one third the size of a normal adult male.

                 

                I struggled for decades with all sorts of medical problems,including heart failure and conduction defects,severe GI disease,atypical seizures,vasculitis,chronic lung infections,multiple bouts of meningitis,regression after regression,and since 2010 kidney problems.Nobody was able to find any cause.Then in 2009,I started seeing a local DAN! doctor,who started doing all sorts of tests.We found that I had all sorts of serious problems with folate metabolism.I was found to have conditions that have all the features of both MTHFR deficiency,and Methylmalonic Acidemia with Homocystinuria Cobalamin C.I could be diagnosed with either,except my numbers are not high enough.

                 

                I was started on leucovorin,and right away my seizures stopped.Then my autism started to improve.I started upping the dose of leucovorin with more and more improvements.Eventually my autism was gone,as long I stayed on the leucovorin,and kept off dairy,but I still had a lot of unexplained medical problems.Last year,after three years on leucovorin,and months on a dairy free diet,I tested positive for both the binding and blocking folate autoantibodies.

                 

                If you know anything about cerebral folate deficiency syndrome and autism,you know it does not occur alone.There is always another metabolic disease that goes along with it,usually mitochondrial disease.I am still not sure which one is the primary condition.My guess is the CFD is secondary.

                 

                In January,I went to California,and saw Dr.Rossignol.He told me that he believed I probably do have mito,as well as CFDS.I learned all about the secondary organic acidemias in mitochondrial disease,how mito and GI disease can work together to cause a lack of muscle development in your teens.He told me that I was one of the more complicated mito/metabolic cases of autism he has seen.He said that I needed a real workup at a hospital where they really understood this stuff,and that meant Arkansas Children's.Dr.Frye is very interested in seeing me now.However,even though Dr.Frye and Dr.Rossignol are close colleagues,I still had to go to the very bottom of the waiting list.

                 

                I don't know if I should start treating myself with the cocktail,before I get my workup for mito or not.

                 

                Roger 



              • Roger Kulp
                I have found relief from my autism,but not my many medical problems.In all the stuff I have read about autism,and in all the groups I belong to,no one talks
                Message 7 of 10 , Apr 6, 2013
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                  I have found relief from my autism,but not my many medical problems.In all the stuff I have read about autism,and in all the groups I belong to,no one talks about what happens when the autism goes away,and you are just as sick as ever,just no longer autistic.

                   

                  Roger 
                   


                  To: Mito@yahoogroups.com
                  From: nimmofamily@...
                  Date: Fri, 5 Apr 2013 04:56:10 -0700
                  Subject: Re: [Mito] New to group,ASD,many diagnoses,not mito...yet

                   

                  Honestly I am glad you wrote about this, I think it would mean a great deal to my oldest son if he were to get tested for mito as well, because his laundry list of conditions and those of his younger brother add up to what you have all rolled up into one. Isaac has high fcning autism, ADHD and Tourettes syndrome. My middle son has mito complexes I/II and III. If you found relief in the meds you described, how wonderful for my son that would be if he could be set free with the same treatment! I will look into that. Thank you again. Bless you.

                  On Mar 30, 2013 11:53 AM, "Roger Kulp" <leucovorinsaves@...> wrote:


                  I know there must be other people out there like me,but in over six years of being in internet autism groups,I have yet to find anybody quite like me,especially in my age group.I was diagnosed with autism originally in an elementary school setting.I was diagnosed under the criteria in the DSM-II with childhood schizophrenia.I had so much going on besides autism.All sorts of medical problems,and nonverbal developmental delays,severe problems with motor coordination,and learning disabilities.It was a very different world when I was a child.There was so much that nobody knew,and autism was blamed on "refrigerator mothers".

                   

                  I was born blind in my left eye.I had a condition known as pseudohypogonaism,meaning serious problems in sexual development with normal hormone levels.As I got older,I also found I would never develop any adult muscles,and my bones are about one third the size of a normal adult male.

                   

                  I struggled for decades with all sorts of medical problems,including heart failure and conduction defects,severe GI disease,atypical seizures,vasculitis,chronic lung infections,multiple bouts of meningitis,regression after regression,and since 2010 kidney problems.Nobody was able to find any cause.Then in 2009,I started seeing a local DAN! doctor,who started doing all sorts of tests.We found that I had all sorts of serious problems with folate metabolism.I was found to have conditions that have all the features of both MTHFR deficiency,and Methylmalonic Acidemia with Homocystinuria Cobalamin C.I could be diagnosed with either,except my numbers are not high enough.

                   

                  I was started on leucovorin,and right away my seizures stopped.Then my autism started to improve.I started upping the dose of leucovorin with more and more improvements.Eventually my autism was gone,as long I stayed on the leucovorin,and kept off dairy,but I still had a lot of unexplained medical problems.Last year,after three years on leucovorin,and months on a dairy free diet,I tested positive for both the binding and blocking folate autoantibodies.

                   

                  If you know anything about cerebral folate deficiency syndrome and autism,you know it does not occur alone.There is always another metabolic disease that goes along with it,usually mitochondrial disease.I am still not sure which one is the primary condition.My guess is the CFD is secondary.

                   

                  In January,I went to California,and saw Dr.Rossignol.He told me that he believed I probably do have mito,as well as CFDS.I learned all about the secondary organic acidemias in mitochondrial disease,how mito and GI disease can work together to cause a lack of muscle development in your teens.He told me that I was one of the more complicated mito/metabolic cases of autism he has seen.He said that I needed a real workup at a hospital where they really understood this stuff,and that meant Arkansas Children's.Dr.Frye is very interested in seeing me now.However,even though Dr.Frye and Dr.Rossignol are close colleagues,I still had to go to the very bottom of the waiting list.

                   

                  I don't know if I should start treating myself with the cocktail,before I get my workup for mito or not.

                   

                  Roger 



                • Heal1child
                  Roger Can you tell us how it is your sick as ever? Is it GI issues or much more than that. I am curious as what other underlying factors are at the heart of
                  Message 8 of 10 , Apr 10, 2013
                  • 0 Attachment
                    Roger
                    Can you tell us how it is your sick as ever? Is it GI issues or much more than that. I am curious as what other underlying factors are at the "heart" of this autism.

                    I also was wondering if you mind sharing how old you are now, or age range.
                    And I am suprised the DR's who your waiting to see, would have you come see them now
                    because you hold so much information for so many others. Your a voice for many who cannot speak.

                    BTW: I wanted to mention that the Leucovorin is not in short supple nationwide. I was shocked that Walgreens told me the same thing. I went to an individual pharmacy and there was no problem getting it.
                    The problem that I have found, is when I first give it to my son he does great for 3-4 days
                    and then starts having sound issues, and behavioral issues. This is at a low dose.
                    Sort of bummed out, because I had to stop it, but know he needs it!
                    I think he has a Methlyation problem, and its going to be a while to get things corrected.
                    Its not something that DR Rossignol understands or that he does not have time to
                    look into the genetic mutations, how to clear up. Many are doing the 23&me genetics
                    or Yasko's genetics, in order to move forward, have to push thru these other things.
                    Allie



                    --- In Mito@yahoogroups.com, Roger Kulp <leucovorinsaves@...> wrote:
                    >
                    > I have found relief from my autism,but not my many medical problems.In all the stuff I have read about autism,and in all the groups I belong to,no one talks about what happens when the autism goes away,and you are just as sick as ever,just no longer autistic. Roger To: Mito@...: nimmofamily@...: Fri, 5 Apr 2013 04:56:10 -0700Subject: Re: [Mito] New to group,ASD,many diagnoses,not mito...yet
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                    > Honestly I am glad you wrote about this, I think it would mean a great deal to my oldest son if he were to get tested for mito as well, because his laundry list of conditions and those of his younger brother add up to what you have all rolled up into one. Isaac has high fcning autism, ADHD and Tourettes syndrome. My middle son has mito complexes I/II and III. If you found relief in the meds you described, how wonderful for my son that would be if he could be set free with the same treatment! I will look into that. Thank you again. Bless you.
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                    > On Mar 30, 2013 11:53 AM, "Roger Kulp" <leucovorinsaves@...> wrote:
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                    > I know there must be other people out there like me,but in over six years of being in internet autism groups,I have yet to find anybody quite like me,especially in my age group.I was diagnosed with autism originally in an elementary school setting.I was diagnosed under the criteria in the DSM-II with childhood schizophrenia.I had so much going on besides autism.All sorts of medical problems,and nonverbal developmental delays,severe problems with motor coordination,and learning disabilities.It was a very different world when I was a child.There was so much that nobody knew,and autism was blamed on "refrigerator mothers".
                    > I was born blind in my left eye.I had a condition known as pseudohypogonaism,meaning serious problems in sexual development with normal hormone levels.As I got older,I also found I would never develop any adult muscles,and my bones are about one third the size of a normal adult male.
                    > I struggled for decades with all sorts of medical problems,including heart failure and conduction defects,severe GI disease,atypical seizures,vasculitis,chronic lung infections,multiple bouts of meningitis,regression after regression,and since 2010 kidney problems.Nobody was able to find any cause.Then in 2009,I started seeing a local DAN! doctor,who started doing all sorts of tests.We found that I had all sorts of serious problems with folate metabolism.I was found to have conditions that have all the features of both MTHFR deficiency,and Methylmalonic Acidemia with Homocystinuria Cobalamin C.I could be diagnosed with either,except my numbers are not high enough.
                    > I was started on leucovorin,and right away my seizures stopped.Then my autism started to improve.I started upping the dose of leucovorin with more and more improvements.Eventually my autism was gone,as long I stayed on the leucovorin,and kept off dairy,but I still had a lot of unexplained medical problems.Last year,after three years on leucovorin,and months on a dairy free diet,I tested positive for both the binding and blocking folate autoantibodies.
                    > If you know anything about cerebral folate deficiency syndrome and autism,you know it does not occur alone.There is always another metabolic disease that goes along with it,usually mitochondrial disease.I am still not sure which one is the primary condition.My guess is the CFD is secondary.
                    > In January,I went to California,and saw Dr.Rossignol.He told me that he believed I probably do have mito,as well as CFDS.I learned all about the secondary organic acidemias in mitochondrial disease,how mito and GI disease can work together to cause a lack of muscle development in your teens.He told me that I was one of the more complicated mito/metabolic cases of autism he has seen.He said that I needed a real workup at a hospital where they really understood this stuff,and that meant Arkansas Children's.Dr.Frye is very interested in seeing me now.However,even though Dr.Frye and Dr.Rossignol are close colleagues,I still had to go to the very bottom of the waiting list.
                    > I don't know if I should start treating myself with the cocktail,before I get my workup for mito or not. Roger
                    >
                  • Roger Kulp
                    It depends on what you mean.Do you want to know about the times I was near death in the ER,from untreated heart failure,in my teens and twenties?How I was
                    Message 9 of 10 , Apr 12, 2013
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                      It depends on what you mean.Do you want to know about the times I was near death in the ER,from untreated heart failure,in my teens and twenties?How I was diagnosed with a cardiac conduction disorder at age nineteen,and the hospital never told me about it? Yes this is a classic sign of mito.

                       

                      You want to know about all the  times I had acute meningitis or pneumonia,and nearly died?

                       

                      The severe episodes of vasculitis I had starting at the age of ten,when I would run high fevers,be in excruciating pain for two weeks,my arms and legs swollen and purple?

                       

                      How about all the really serious regressions I had from all these sicknesses?Regressions that I would only partially recover from three or four years later,and then get hit with something else and regress again?

                       

                      Or maybe you want to hear about all my serious problems and delays with motor and physical development as a child?

                       
                      If you have looked into autism beyond vaccines,you know there are dozens and dozens of different causes that have been found.All of them seem to fall into three general categories.
                       
                      Autoimmune,this can be anything from PANDAS to channelopathies like Dravet Syndrome to cerebral palsy.
                       
                      Chromosomal deletions duplications,and mutations.
                       
                      Metabolic diseases,including mito,what we are all interested in here. 
                       
                      They may all have the one feature of autistic behavior,but they are all so different,they really should not be treated the same way or lumped together.
                       
                      I will tell you,I was first diagnosed with Childhood Schizophrenia in 1972,when I was in the sixth grade.Back in the bad old days of the refrigerator mother.That was the first of three times,I came very close to being put in an institution,or residential treatment center.Each time,my mother intervened to keep me out.I was diagnosed in a school setting,so I lost all records of it when I finished high school.I was reevaluated in 2007,and found to be more severe than Asperger,but not as severe as Autistic Disorder.
                       
                      I struggled all my life with all sorts of undiagnosed sickness,that no doctor could figure out.In 2009,I found a DAN! doctor,who started doing one big round of tests after another on me.A dozen or two at a clip.He would not have kept working with me,unless we had found a lot of stuff.It has been a case of my doctor handing me a fistful of test results,and sending me home to figure them out.Which is why I have learned so much.
                       
                      Most parents can't get past vaccines,metals,and toxins.They will never explore it to the degree I have because of their antivaccine prejudices.I knew it was all genetic from the start.I am unique in both my experiences,and what I have learned,but I could never share it,because parents are so convinced it's all vaccines.
                       
                      But from what I have seen,most parents don't have children who are as sick as I have been,or have as many problems as I have had.
                       
                      Roger

                      To: Mito@yahoogroups.com
                      From: blessingsx10@...
                      Date: Thu, 11 Apr 2013 04:36:53 +0000
                      Subject: [Mito] Re: New to group,ASD,many diagnoses,not mito...yet

                       

                      Roger
                      Can you tell us how it is your sick as ever? Is it GI issues or much more than that. I am curious as what other underlying factors are at the "heart" of this autism.

                      I also was wondering if you mind sharing how old you are now, or age range.
                      And I am suprised the DR's who your waiting to see, would have you come see them now
                      because you hold so much information for so many others. Your a voice for many who cannot speak.

                      BTW: I wanted to mention that the Leucovorin is not in short supple nationwide. I was shocked that Walgreens told me the same thing. I went to an individual pharmacy and there was no problem getting it.
                      The problem that I have found, is when I first give it to my son he does great for 3-4 days
                      and then starts having sound issues, and behavioral issues. This is at a low dose.
                      Sort of bummed out, because I had to stop it, but know he needs it!
                      I think he has a Methlyation problem, and its going to be a while to get things corrected.
                      Its not something that DR Rossignol understands or that he does not have time to
                      look into the genetic mutations, how to clear up. Many are doing the 23&me genetics
                      or Yasko's genetics, in order to move forward, have to push thru these other things.
                      Allie

                      --- In Mito@yahoogroups.com, Roger Kulp <leucovorinsaves@...> wrote:
                      >
                      > I have found relief from my autism,but not my many medical problems.In all the stuff I have read about autism,and in all the groups I belong to,no one talks about what happens when the autism goes away,and you are just as sick as ever,just no longer autistic. Roger To: Mito@...: nimmofamily@...: Fri, 5 Apr 2013 04:56:10 -0700Subject: Re: [Mito] New to group,ASD,many diagnoses,not mito...yet
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                      > Honestly I am glad you wrote about this, I think it would mean a great deal to my oldest son if he were to get tested for mito as well, because his laundry list of conditions and those of his younger brother add up to what you have all rolled up into one. Isaac has high fcning autism, ADHD and Tourettes syndrome. My middle son has mito complexes I/II and III. If you found relief in the meds you described, how wonderful for my son that would be if he could be set free with the same treatment! I will look into that. Thank you again. Bless you.
                      >
                      > On Mar 30, 2013 11:53 AM, "Roger Kulp" <leucovorinsaves@...> wrote:
                      >
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                      > I know there must be other people out there like me,but in over six years of being in internet autism groups,I have yet to find anybody quite like me,especially in my age group.I was diagnosed with autism originally in an elementary school setting.I was diagnosed under the criteria in the DSM-II with childhood schizophrenia.I had so much going on besides autism.All sorts of medical problems,and nonverbal developmental delays,severe problems with motor coordination,and learning disabilities.It was a very different world when I was a child.There was so much that nobody knew,and autism was blamed on "refrigerator mothers".
                      > I was born blind in my left eye.I had a condition known as pseudohypogonaism,meaning serious problems in sexual development with normal hormone levels.As I got older,I also found I would never develop any adult muscles,and my bones are about one third the size of a normal adult male.
                      > I struggled for decades with all sorts of medical problems,including heart failure and conduction defects,severe GI disease,atypical seizures,vasculitis,chronic lung infections,multiple bouts of meningitis,regression after regression,and since 2010 kidney problems.Nobody was able to find any cause.Then in 2009,I started seeing a local DAN! doctor,who started doing all sorts of tests.We found that I had all sorts of serious problems with folate metabolism.I was found to have conditions that have all the features of both MTHFR deficiency,and Methylmalonic Acidemia with Homocystinuria Cobalamin C.I could be diagnosed with either,except my numbers are not high enough.
                      > I was started on leucovorin,and right away my seizures stopped.Then my autism started to improve.I started upping the dose of leucovorin with more and more improvements.Eventually my autism was gone,as long I stayed on the leucovorin,and kept off dairy,but I still had a lot of unexplained medical problems.Last year,after three years on leucovorin,and months on a dairy free diet,I tested positive for both the binding and blocking folate autoantibodies.
                      > If you know anything about cerebral folate deficiency syndrome and autism,you know it does not occur alone.There is always another metabolic disease that goes along with it,usually mitochondrial disease.I am still not sure which one is the primary condition.My guess is the CFD is secondary.
                      > In January,I went to California,and saw Dr.Rossignol.He told me that he believed I probably do have mito,as well as CFDS.I learned all about the secondary organic acidemias in mitochondrial disease,how mito and GI disease can work together to cause a lack of muscle development in your teens.He told me that I was one of the more complicated mito/metabolic cases of autism he has seen.He said that I needed a real workup at a hospital where they really understood this stuff,and that meant Arkansas Children's.Dr.Frye is very interested in seeing me now.However,even though Dr.Frye and Dr.Rossignol are close colleagues,I still had to go to the very bottom of the waiting list.
                      > I don't know if I should start treating myself with the cocktail,before I get my workup for mito or not. Roger
                      >

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