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RE: [Mito] Re: Folate/mito doctors? Was Leucovorin

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  • Roger Kulp
    The lab was damaged by Hurricane Sandy. Are there mito specialists who know about cerebral folate deficiency and autism,besides Dr.Frye at Arkansas
    Message 1 of 20 , May 7, 2013

      The lab was damaged by Hurricane Sandy.

       

      Are there mito specialists who know about cerebral folate deficiency and autism,besides Dr.Frye at Arkansas Children's,or Dr.Ramaekers in Belgium?I recently learned the wait to be seen in Arkansas is over a year and a half.I am seriously thinking of getting the money together to go to Belgium.

       

      Roger
       


      To: Mito@yahoogroups.com
      From: fieldscheryl@...
      Date: Sat, 4 May 2013 05:54:15 -0700
      Subject: [Mito] Re: Leucovorin

       

      Cerebral folate deficiency and for some pts on chemo.

      Dr. Quadros at SUNY was doing the testing for the cerebral folate receptor antibodies, but I think this has stopped.


      Cheryl

    • David Staup
      Roger I have read your posts and suspect the following info might help you in your search for understanding and help. I have identified what I believe to be
      Message 2 of 20 , May 7, 2013
        Roger
        I have read your posts and suspect the following info might help you in your search for understanding and help.

        I have identified what I believe to be the common thread in all mito...the mito are the arbitrators of cell death! through a process called apoptosis the mito call for and direct the process. This is a normal process that becomes disregulated in poorly functioning mito.  It is this excessive cell death and the bodies reactions to it that are responsible for virtually all of the symptoms of mito.
        Google "autism and apoptosis"...for example ..google "any named malady associated with mito" and "apoptosis" and you will  see the links.


        see here:
        http://www.ncbi.nlm.nih.gov/pubmed/16175394?dopt=Abstract


        I tell you this because I have found a common substance that re-regulates apoptosis by inhibiting a critical step in the process "mitochondrial swelling"


        see here:
        http://www.sciencedirect.com/science/article/pii/0006300261904498

        As mentioned in the study the substance is low doses of certain antihistamines. Benadryl (diphenhydramine) is the most readily available and the dose that seems to work best is 5 mg 4 times a day.  2 ml of the childrens liquid benadryl is 5 MG....costs less that $5.00 per month.

        Try it...the results start within days.

        David


         

         


        On 5/7/2013 7:51 AM, Roger Kulp wrote:
         

        The lab was damaged by Hurricane Sandy.

         

        Are there mito specialists who know about cerebral folate deficiency and autism,besides Dr.Frye at Arkansas Children's,or Dr.Ramaekers in Belgium?I recently learned the wait to be seen in Arkansas is over a year and a half.I am seriously thinking of getting the money together to go to Belgium.

         

        Roger
         


        To: Mito@yahoogroups.com
        From: fieldscheryl@...
        Date: Sat, 4 May 2013 05:54:15 -0700
        Subject: [Mito] Re: Leucovorin

         
        Cerebral folate deficiency and for some pts on chemo.

        Dr. Quadros at SUNY was doing the testing for the cerebral folate receptor antibodies, but I think this has stopped.


        Cheryl

      • Roger Kulp
        I have an actual diagnosis of cerebral folate deficiency syndrome from SUNY Downstate.It is this diagnosis has led me to look for a mitochondrial one,after
        Message 3 of 20 , May 7, 2013

          I have an actual diagnosis of cerebral folate deficiency syndrome from SUNY Downstate.It is this diagnosis has led me to look for a mitochondrial one,after Dr.Rossignol  said I probably have mito.Cell death is a feature of this.

           

          Roger 


           


          To: Mito@yahoogroups.com
          CC: leucovorinsaves@...
          From: dstaup@...
          Date: Tue, 7 May 2013 08:38:49 -0500
          Subject: Re: [Mito] Re: Folate/mito doctors? Was Leucovorin

           

          Roger
          I have read your posts and suspect the following info might help you in your search for understanding and help.

          I have identified what I believe to be the common thread in all mito...the mito are the arbitrators of cell death! through a process called apoptosis the mito call for and direct the process. This is a normal process that becomes disregulated in poorly functioning mito.  It is this excessive cell death and the bodies reactions to it that are responsible for virtually all of the symptoms of mito.
          Google "autism and apoptosis"...for example ..google "any named malady associated with mito" and "apoptosis" and you will  see the links.


          see here:
          http://www.ncbi.nlm.nih.gov/pubmed/16175394?dopt=Abstract


          I tell you this because I have found a common substance that re-regulates apoptosis by inhibiting a critical step in the process "mitochondrial swelling"


          see here:
          http://www.sciencedirect.com/science/article/pii/0006300261904498

          As mentioned in the study the substance is low doses of certain antihistamines. Benadryl (diphenhydramine) is the most readily available and the dose that seems to work best is 5 mg 4 times a day.  2 ml of the childrens liquid benadryl is 5 MG....costs less that $5.00 per month.

          Try it...the results start within days.

          David


           

           


          On 5/7/2013 7:51 AM, Roger Kulp wrote:
           

          The lab was damaged by Hurricane Sandy.

           

          Are there mito specialists who know about cerebral folate deficiency and autism,besides Dr.Frye at Arkansas Children's,or Dr.Ramaekers in Belgium?I recently learned the wait to be seen in Arkansas is over a year and a half.I am seriously thinking of getting the money together to go to Belgium.

           

          Roger
           


          To: Mito@yahoogroups.com
          From: fieldscheryl@...
          Date: Sat, 4 May 2013 05:54:15 -0700
          Subject: [Mito] Re: Leucovorin

           
          Cerebral folate deficiency and for some pts on chemo.

          Dr. Quadros at SUNY was doing the testing for the cerebral folate receptor antibodies, but I think this has stopped.


          Cheryl

        • David Staup
          Roger what I m saying is low doses of benadryl inhibit (reduce) the amount of cell death to more normal levels... this will allow you to function more while
          Message 4 of 20 , May 7, 2013
            Roger what I'm saying is low doses of benadryl inhibit (reduce) the amount of cell death to more normal levels...
            this will allow you to function more while you search for answers...it is a treatment that works.
            try it.

            David
            On 5/7/2013 9:15 AM, Roger Kulp wrote:
             

            I have an actual diagnosis of cerebral folate deficiency syndrome from SUNY Downstate.It is this diagnosis has led me to look for a mitochondrial one,after Dr.Rossignol  said I probably have mito.Cell death is a feature of this.

             

            Roger 


             


            To: Mito@yahoogroups.com
            CC: leucovorinsaves@...
            From: dstaup@...
            Date: Tue, 7 May 2013 08:38:49 -0500
            Subject: Re: [Mito] Re: Folate/mito doctors? Was Leucovorin

             

            Roger
            I have read your posts and suspect the following info might help you in your search for understanding and help.

            I have identified what I believe to be the common thread in all mito...the mito are the arbitrators of cell death! through a process called apoptosis the mito call for and direct the process. This is a normal process that becomes disregulated in poorly functioning mito.  It is this excessive cell death and the bodies reactions to it that are responsible for virtually all of the symptoms of mito.
            Google "autism and apoptosis"...for example ..google "any named malady associated with mito" and "apoptosis" and you will  see the links.


            see here:
            http://www.ncbi.nlm.nih.gov/pubmed/16175394?dopt=Abstract


            I tell you thisbecause I have found a common substance that re-regulatesapoptosis by inhibiting a critical step in the process "mitochondrial swelling"


            see here:
            http://www.sciencedirect.com/science/article/pii/0006300261904498

            As mentioned in the study the substance is low doses of certain antihistamines. Benadryl (diphenhydramine) is the most readily available and the dose that seems to work best is 5 mg 4 times a day.  2 ml of the childrens liquid benadryl is 5 MG....costs less that $5.00 per month.

            Try it...the results start within days.

            David



             

             

            On 5/7/2013 7:51 AM, Roger Kulp wrote:
             

            The lab was damaged by Hurricane Sandy.

             

            Are there mito specialists who know about cerebral folate deficiency and autism,besides Dr.Frye at Arkansas Children's,or Dr.Ramaekers in Belgium?I recently learned the wait to be seen in Arkansas is over a year and a half.I am seriously thinking of getting the money together to go to Belgium.

             

            Roger
             


            To: Mito@yahoogroups.com
            From: fieldscheryl@...
            Date: Sat, 4 May 2013 05:54:15 -0700
            Subject: [Mito] Re: Leucovorin

             
            Cerebral folate deficiency and for some pts on chemo.

            Dr. Quadros at SUNY was doing the testing for the cerebral folate receptor antibodies, but I think this has stopped.


            Cheryl


          • Robert Pische
            Try mayo clinic Not sure how to post on board ,but my sons had mito since 8 now 19 hed usually pretty normal 1 episode a year ,he takes l
            Message 5 of 20 , May 9, 2013
              Try mayo clinic

              Not sure how to post on board ,but my sons had mito since 8 now 19 hed usually pretty normal 1 episode a year ,he takes l arginine,biotin,canotine ,and co q 1o,and drinks plenty of liquid ,hes now developed nose bleeds once a day ,not sure it is due to stress ,house being dry .or is it a mito thing ???any help greatly appreciated . Robert .


              ------------------------------
              On Tue, May 7, 2013 3:22 PM EDT David Staup wrote:

              >Roger what I'm saying is low doses of benadryl inhibit (reduce) the amount of cell death to more normal levels...
              >this will allow you to function more while you search for answers...it is a treatment that works.
              >try it.
              >
              >David
              >On 5/7/2013 9:15 AM, Roger Kulp wrote:
              >>
              >> I have an actual diagnosis of cerebral folate deficiency syndrome from SUNY Downstate.It is this diagnosis has led me to look for a mitochondrial one,after Dr.Rossignol said I probably have mito.Cell death is a feature of this.
              >>
              >> Roger
              >>
              >>
              >> ------------------------------------------------------------------------
              >> To: Mito@yahoogroups.com
              >> CC: leucovorinsaves@...
              >> From: dstaup@...
              >> Date: Tue, 7 May 2013 08:38:49 -0500
              >> Subject: Re: [Mito] Re: Folate/mito doctors? Was Leucovorin
              >>
              >> Roger
              >> I have read your posts and suspect the following info might help you in your search for understanding and help.
              >>
              >> I have identified what I believe to be the common thread in all mito...the mito are the arbitrators of cell death! through a process called apoptosis the mito call for and direct the process. This is a normal process that becomes disregulated in poorly functioning mito. It is this excessive cell death and the bodies reactions to it that are responsible forvirtually all of the symptoms of mito.
              >> Google "autism and apoptosis"...for example ..google "any named malady associated with mito" and "apoptosis" and you will see the links.
              >>
              >>
              >> see here:
              >> http://www.ncbi.nlm.nih.gov/pubmed/16175394?dopt=Abstract
              >>
              >>
              >> I tell you this because I have found a common substance that re-regulates apoptosis by inhibiting a critical step in the process"mitochondrial swelling"
              >>
              >>
              >> see here:
              >> http://www.sciencedirect.com/science/article/pii/0006300261904498
              >>
              >> As mentioned in the study the substance is low doses of certain antihistamines. Benadryl (diphenhydramine) is the most readily available and the dose that seems to work best is 5 mg 4 times a day. 2 ml of the childrens liquid benadryl is 5 MG....costs less that $5.00 per month.
              >>
              >> Try it...the results start within days.
              >>
              >> David
              >>
              >>
              >>
              >>
              >>
              >> On 5/7/2013 7:51 AM, Roger Kulp wrote:
              >>
              >> The lab was damaged by Hurricane Sandy.
              >>
              >> Are there mito specialists who know about cerebral folate
              >> deficiency and autism,besides Dr.Frye at Arkansas Children's,or
              >> Dr.Ramaekers in Belgium?I recently learned the wait to be seen in
              >> Arkansas is over a year and a half.I am seriously thinking of
              >> getting the money together to go to Belgium.
              >>
              >> Roger
              >>
              >> ------------------------------------------------------------------------
              >> To: Mito@yahoogroups.com <mailto:Mito@yahoogroups.com>
              >> From: fieldscheryl@... <mailto:fieldscheryl@...>
              >> Date: Sat, 4 May 2013 05:54:15 -0700
              >> Subject: [Mito] Re: Leucovorin
              >>
              >> Cerebral folate deficiency and for some pts on chemo.
              >>
              >> Dr. Quadros at SUNY was doing the testing for the cerebral folate
              >> receptor antibodies, but I think this has stopped.
              >>
              >>
              >> Cheryl
              >>
              >>
              >>
              >
            • Rick3224
              I get nose bleeds every time I try Carotene, even worse if its vit E ( can only take 100mg a day). And I don t have any hematologic problems. Rick Sent from my
              Message 6 of 20 , May 20, 2013
                I get nose bleeds every time I try Carotene, even worse if its vit E ( can only take 100mg a day). And I don't have any hematologic problems.
                Rick

                Sent from my iPhone

                On May 10, 2013, at 12:07 AM, Robert Pische <crimsonacecleaning@...> wrote:

                 



                Try mayo clinic

                Not sure how to post on board ,but my sons had mito since 8 now 19 hed usually pretty normal 1 episode a year ,he takes l arginine,biotin,canotine ,and co q 1o,and drinks plenty of liquid ,hes now developed nose bleeds once a day ,not sure it is due to stress ,house being dry .or is it a mito thing ???any help greatly appreciated . Robert .

                ------------------------------
                On Tue, May 7, 2013 3:22 PM EDT David Staup wrote:

                >Roger what I'm saying is low doses of benadryl inhibit (reduce) the amount of cell death to more normal levels...
                >this will allow you to function more while you search for answers...it is a treatment that works.
                >try it.
                >
                >David
                >On 5/7/2013 9:15 AM, Roger Kulp wrote:
                >>
                >> I have an actual diagnosis of cerebral folate deficiency syndrome from SUNY Downstate.It is this diagnosis has led me to look for a mitochondrial one,after Dr.Rossignol said I probably have mito.Cell death is a feature of this.
                >>
                >> Roger
                >>
                >>
                >> ----------------------------------------------------------
                >> To: Mito@yahoogroups.com
                >> CC: leucovorinsaves@...
                >> From: dstaup@...
                >> Date: Tue, 7 May 2013 08:38:49 -0500
                >> Subject: Re: [Mito] Re: Folate/mito doctors? Was Leucovorin
                >>
                >> Roger
                >> I have read your posts and suspect the following info might help you in your search for understanding and help.
                >>
                >> I have identified what I believe to be the common thread in all mito...the mito are the arbitrators of cell death! through a process called apoptosis the mito call for and direct the process. This is a normal process that becomes disregulated in poorly functioning mito. It is this excessive cell death and the bodies reactions to it that are responsible forvirtually all of the symptoms of mito.
                >> Google "autism and apoptosis"...for example ..google "any named malady associated with mito" and "apoptosis" and you will see the links.
                >>
                >>
                >> see here:
                >> http://www.ncbi.nlm.nih.gov/pubmed/16175394?dopt=Abstract
                >>
                >>
                >> I tell you this because I have found a common substance that re-regulates apoptosis by inhibiting a critical step in the process"mitochondrial swelling"
                >>
                >>
                >> see here:
                >> http://www.sciencedirect.com/science/article/pii/0006300261904498
                >>
                >> As mentioned in the study the substance is low doses of certain antihistamines. Benadryl (diphenhydramine) is the most readily available and the dose that seems to work best is 5 mg 4 times a day. 2 ml of the childrens liquid benadryl is 5 MG....costs less that $5.00 per month.
                >>
                >> Try it...the results start within days.
                >>
                >> David
                >>
                >>
                >>
                >>
                >>
                >> On 5/7/2013 7:51 AM, Roger Kulp wrote:
                >>
                >> The lab was damaged by Hurricane Sandy.
                >>
                >> Are there mito specialists who know about cerebral folate
                >> deficiency and autism,besides Dr.Frye at Arkansas Children's,or
                >> Dr.Ramaekers in Belgium?I recently learned the wait to be seen in
                >> Arkansas is over a year and a half.I am seriously thinking of
                >> getting the money together to go to Belgium.
                >>
                >> Roger
                >>
                >> ----------------------------------------------------------
                >> To: Mito@yahoogroups.com <mailto:Mito@yahoogroups.com>
                >> From: fieldscheryl@... <mailto:fieldscheryl@...>
                >> Date: Sat, 4 May 2013 05:54:15 -0700
                >> Subject: [Mito] Re: Leucovorin
                >>
                >> Cerebral folate deficiency and for some pts on chemo.
                >>
                >> Dr. Quadros at SUNY was doing the testing for the cerebral folate
                >> receptor antibodies, but I think this has stopped.
                >>
                >>
                >> Cheryl
                >>
                >>
                >>
                >

              • Roger Kulp
                I have asked them.I have learned this is so rare,that Dr.Ramaekers at Centre Hospitalier Universitaire de Liège in Belgium is the only real choice I have.He
                Message 7 of 20 , May 20, 2013

                  I have asked them.I have learned this is so rare,that Dr.Ramaekers at Centre Hospitalier Universitaire de Liège in Belgium is the only real choice I have.He is the man who discovered the disease in 2003.My problem is getting the money to travel.

                   

                  Roger
                   


                  To: mito@yahoogroups.com
                  From: crimsonacecleaning@...
                  Date: Thu, 9 May 2013 21:07:10 -0700
                  Subject: Re: [Mito] Re: Folate/mito doctors? Was Leucovorin

                   



                  Try mayo clinic

                  Not sure how to post on board ,but my sons had mito since 8 now 19 hed usually pretty normal 1 episode a year ,he takes l arginine,biotin,canotine ,and co q 1o,and drinks plenty of liquid ,hes now developed nose bleeds once a day ,not sure it is due to stress ,house being dry .or is it a mito thing ???any help greatly appreciated . Robert .

                  ------------------------------

                  On Tue, May 7, 2013 3:22 PM EDT David Staup wrote:

                  >Roger what I'm saying is low doses of benadryl inhibit (reduce) the amount of cell death to more normal levels...
                  >this will allow you to function more while you search for answers...it is a treatment that works.
                  >try it.
                  >
                  >David
                  >On 5/7/2013 9:15 AM, Roger Kulp wrote:
                  >>
                  >> I have an actual diagnosis of cerebral folate deficiency syndrome from SUNY Downstate.It is this diagnosis has led me to look for a mitochondrial one,after Dr.Rossignol said I probably have mito.Cell death is a feature of this.
                  >>
                  >> Roger
                  >>
                  >>
                  >> ----------------------------------------------------------
                  >> To: Mito@yahoogroups.com
                  >> CC: leucovorinsaves@...
                  >> From: dstaup@...
                  >> Date: Tue, 7 May 2013 08:38:49 -0500
                  >> Subject: Re: [Mito] Re: Folate/mito doctors? Was Leucovorin
                  >>
                  >> Roger
                  >> I have read your posts and suspect the following info might help you in your search for understanding and help.
                  >>
                  >> I have identified what I believe to be the common thread in all mito...the mito are the arbitrators of cell death! through a process called apoptosis the mito call for and direct the process. This is a normal process that becomes disregulated in poorly functioning mito. It is this excessive cell death and the bodies reactions to it that are responsible forvirtually all of the symptoms of mito.
                  >> Google "autism and apoptosis"...for example ..google "any named malady associated with mito" and "apoptosis" and you will see the links.
                  >>
                  >>
                  >> see here:
                  >> http://www.ncbi.nlm.nih.gov/pubmed/16175394?dopt=Abstract
                  >>
                  >>
                  >> I tell you this because I have found a common substance that re-regulates apoptosis by inhibiting a critical step in the process"mitochondrial swelling"
                  >>
                  >>
                  >> see here:
                  >> http://www.sciencedirect.com/science/article/pii/0006300261904498
                  >>
                  >> As mentioned in the study the substance is low doses of certain antihistamines. Benadryl (diphenhydramine) is the most readily available and the dose that seems to work best is 5 mg 4 times a day. 2 ml of the childrens liquid benadryl is 5 MG....costs less that $5.00 per month.
                  >>
                  >> Try it...the results start within days.
                  >>
                  >> David
                  >>
                  >>
                  >>
                  >>
                  >>
                  >> On 5/7/2013 7:51 AM, Roger Kulp wrote:
                  >>
                  >> The lab was damaged by Hurricane Sandy.
                  >>
                  >> Are there mito specialists who know about cerebral folate
                  >> deficiency and autism,besides Dr.Frye at Arkansas Children's,or
                  >> Dr.Ramaekers in Belgium?I recently learned the wait to be seen in
                  >> Arkansas is over a year and a half.I am seriously thinking of
                  >> getting the money together to go to Belgium.
                  >>
                  >> Roger
                  >>
                  >> ----------------------------------------------------------
                  >> To: Mito@yahoogroups.com <mailto:Mito@yahoogroups.com>
                  >> From: fieldscheryl@... <mailto:fieldscheryl@...>
                  >> Date: Sat, 4 May 2013 05:54:15 -0700
                  >> Subject: [Mito] Re: Leucovorin
                  >>
                  >> Cerebral folate deficiency and for some pts on chemo.
                  >>
                  >> Dr. Quadros at SUNY was doing the testing for the cerebral folate
                  >> receptor antibodies, but I think this has stopped.
                  >>
                  >>
                  >> Cheryl
                  >>
                  >>
                  >>
                  >

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