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Oops...meant Leucovorin and MTHFR


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We ran the anti-cerebral folate receptor abs test at SUNY under Dr. Edward Quadros and DD's binding antibodies came out positive. Negative for Blocking antibodies.

 

Here are links to Dr. Quadros' study: http://www.nature.com/mp/journal/vaop/ncurrent/full/mp2011175a.html and http://www.nature.com/mp/journal/vaop/ncurrent/full/mp201222a.html

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Did it help DD's methylation? What results did you see? Is she still on it?

 

my daughter took leucovorin for a long period of time from her llmd. no bad effects that we noticed. she did her best under the care of that doc, but leucovorin was one of many,many meds she took under that docs direction.

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I suppose it did help, but again, she was on so much, hard to pinpoint what was helping. she.is not on it. in spring 2010 she entered the darkest part of her illness and stopped all meds and we have not been back to llmd since then.

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MY son tested negative on both for the Quadros test but our DAN said lets try leucovorin anyway because some kids see benefit. But when I filled the script at CVS the pharmacist was very concerned and said that leucovrin treats anemia and she wanted to make sure I knew if my son had anemia or not. I still have the abx but have not administered it yet. too chicken and my son was not positive for the test.

 

I do have a circle of friends whose kids did test positive and have seen some good results. One of the side effects is headaches. You have to work up to the correct dosage and back off if headaches are experienced. Also you have to eliminate all dairy if you are going to treat folate deficiency.

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My son has been on Leucovorin (folinic acid) for the past 7 months. We have only recently begun to see benefits after his dose was increased to 1 mg/kg/day divided into three doses. We are still holding our breath that he continues to improve on this higher dose. BTW, his cerebral spinal fluid showed low MTHF, his serum folate was normal, and his blocking antibodies on Dr. Quadros' test were low positive.

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So his blocking antibodies are low positive and binding antibodies are negative? My DD's blocking antibodies are negative and binding antibodies are low positive. Is he 677 or 1298 MTHFR? Homozygous or heterozygous? Did you ever try methylfolate to treat or did you go right to leucovorin? Did he experience any side effects? What kind of improvements are you seeing? Thanks!

 

My son has been on Leucovorin (folinic acid) for the past 7 months. We have only recently begun to see benefits after his dose was increased to 1 mg/kg/day divided into three doses. We are still holding our breath that he continues to improve on this higher dose. BTW, his cerebral spinal fluid showed low MTHF, his serum folate was normal, and his blocking antibodies on Dr. Quadros' test were low positive.

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So his blocking antibodies are low positive and binding antibodies are negative? My DD's blocking antibodies are negative and binding antibodies are low positive. Is he 677 or 1298 MTHFR? Homozygous or heterozygous? Did you ever try methylfolate to treat or did you go right to leucovorin? Did he experience any side effects? What kind of improvements are you seeing? Thanks!

 

My son has been on Leucovorin (folinic acid) for the past 7 months. We have only recently begun to see benefits after his dose was increased to 1 mg/kg/day divided into three doses. We are still holding our breath that he continues to improve on this higher dose. BTW, his cerebral spinal fluid showed low MTHF, his serum folate was normal, and his blocking antibodies on Dr. Quadros' test were low positive.

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So his blocking antibodies are low positive and binding antibodies are negative? My DD's blocking antibodies are negative and binding antibodies are low positive. Is he 677 or 1298 MTHFR? Homozygous or heterozygous? Did you ever try methylfolate to treat or did you go right to leucovorin? Did he experience any side effects? What kind of improvements are you seeing? Thanks!

 

My son has been on Leucovorin (folinic acid) for the past 7 months. We have only recently begun to see benefits after his dose was increased to 1 mg/kg/day divided into three doses. We are still holding our breath that he continues to improve on this higher dose. BTW, his cerebral spinal fluid showed low MTHF, his serum folate was normal, and his blocking antibodies on Dr. Quadros' test were low positive.

 

I'm sorry that I almost missed this post. Yes, my son had low levels of blocking antibodies but no binding antibodies. He was tested several years ago for the MTHFR mutation and he was negative. We are not sure what precipitated the cerebral folate deficiency but it's suggested that it resulted from some autoimmune process. We don't know for sure how it is tied into his PANDAS or autism diagnoses but there probably is some relationship. Plasmapheresis was tried for quite awhile but it was not helpful. The biggest improvements were seen from a prednisone burst trial and then more recently from therapeutic dosages of Leucovorin. His many symptoms are less severe but they are not gone yet. The severe movement symptoms, gait problems, eye symptoms, sensory sensitivity, anxiety and OCD are improving. There is still more tweaking to do to return him to health. Yes, we did try methylfolate((Deplin) briefly but went back to Leucovorin on the advice of his neurologist plus Leucovorin was covered by our insurance plan and methylfolate wasn't. We have not seen any adverse side effects from either.

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So you think Leucovorin helped with anxiety and OCD? That would be very cool! We are first increasing DD's methyfolate slowly to 15 mg and if that doesn't help we're going to take her off the methylfolate and try the Leucovorin instead. Or, I suppose we could try a mixture. One thing we have not yet checked is the COMT gene. If DD is COMT +/- then she may do better with Leucovorin because it does not add methyl groups directly into the system.

 

From what I understand the tiniest tweaking in Leucovorin can make a huge difference.

 

So his blocking antibodies are low positive and binding antibodies are negative? My DD's blocking antibodies are negative and binding antibodies are low positive. Is he 677 or 1298 MTHFR? Homozygous or heterozygous? Did you ever try methylfolate to treat or did you go right to leucovorin? Did he experience any side effects? What kind of improvements are you seeing? Thanks!

 

My son has been on Leucovorin (folinic acid) for the past 7 months. We have only recently begun to see benefits after his dose was increased to 1 mg/kg/day divided into three doses. We are still holding our breath that he continues to improve on this higher dose. BTW, his cerebral spinal fluid showed low MTHF, his serum folate was normal, and his blocking antibodies on Dr. Quadros' test were low positive.

 

I'm sorry that I almost missed this post. Yes, my son had low levels of blocking antibodies but no binding antibodies. He was tested several years ago for the MTHFR mutation and he was negative. We are not sure what precipitated the cerebral folate deficiency but it's suggested that it resulted from some autoimmune process. We don't know for sure how it is tied into his PANDAS or autism diagnoses but there probably is some relationship. Plasmapheresis was tried for quite awhile but it was not helpful. The biggest improvements were seen from a prednisone burst trial and then more recently from therapeutic dosages of Leucovorin. His many symptoms are less severe but they are not gone yet. The severe movement symptoms, gait problems, eye symptoms, sensory sensitivity, anxiety and OCD are improving. There is still more tweaking to do to return him to health. Yes, we did try methylfolate((Deplin) briefly but went back to Leucovorin on the advice of his neurologist plus Leucovorin was covered by our insurance plan and methylfolate wasn't. We have not seen any adverse side effects from either.

Edited by NancyD
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I have read about doctors dosing at 1 mg/kg. My son is 100 pounds, so that's 45 kilograms. Is that the kind of dosage you are talking about? We saw great results with reducing/eliminating anxiety and bedwetting at lower dosages, but those tics and that low-level OCD just won't go away.

 

Also, is there supposed to be a pharmacological difference between leucovorin and the OTC methylfolate supplements? Aren't they the same active compound?

 

Thanks!

 

So his blocking antibodies are low positive and binding antibodies are negative? My DD's blocking antibodies are negative and binding antibodies are low positive. Is he 677 or 1298 MTHFR? Homozygous or heterozygous? Did you ever try methylfolate to treat or did you go right to leucovorin? Did he experience any side effects? What kind of improvements are you seeing? Thanks!

 

My son has been on Leucovorin (folinic acid) for the past 7 months. We have only recently begun to see benefits after his dose was increased to 1 mg/kg/day divided into three doses. We are still holding our breath that he continues to improve on this higher dose. BTW, his cerebral spinal fluid showed low MTHF, his serum folate was normal, and his blocking antibodies on Dr. Quadros' test were low positive.

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From what I have read in the study they are prescribing 2 mg/kg Leucovorin divided into two doses (maximum 50 mg daily). The dose was increased over a 2-week period.

 

Yes, there is a difference between folinic acid (5-formyl tetrahydrofolate) and methyfolate and I hope I can explain this accurately.

 

There are 4 steps to converting folic acid into L-methyfolate: folic acid > (1) dihydrofolate > (2) tetrahydrofolate > (3) 5, 10 methylene THF > (4) 5-methyfolate.

 

So folinic acid is one step in the conversion process. Those with heterozygous 677 MTHFR may have difficulty converting folic acid into L-methylfolate and those with homozygous 677 MTHFR will have greater difficulty converting folic acid into L-methyfolate. Ordinarily you would give L-methylfolate, rather than folinic acid, to an individual with homozygous 677 MTHFR in order to by-pass the whole conversion process. However, if the individual also has a positive folate receptor (FR) blocking antibody (meaning an antibody that blocks the binding of folic acid to the folate receptor) or binding autoantibodies against the folate receptor (this is abnormal), this presents an additional problem. And, if there is a COMT mutation this may further complicate the process. This is where I start to get lost and am trying to figure it out.

 

Perhaps someone else might want to add to this?

 

I have read about doctors dosing at 1 mg/kg. My son is 100 pounds, so that's 45 kilograms. Is that the kind of dosage you are talking about? We saw great results with reducing/eliminating anxiety and bedwetting at lower dosages, but those tics and that low-level OCD just won't go away.

 

Also, is there supposed to be a pharmacological difference between leucovorin and the OTC methylfolate supplements? Aren't they the same active compound?

 

Thanks!

 

So his blocking antibodies are low positive and binding antibodies are negative? My DD's blocking antibodies are negative and binding antibodies are low positive. Is he 677 or 1298 MTHFR? Homozygous or heterozygous? Did you ever try methylfolate to treat or did you go right to leucovorin? Did he experience any side effects? What kind of improvements are you seeing? Thanks!

 

My son has been on Leucovorin (folinic acid) for the past 7 months. We have only recently begun to see benefits after his dose was increased to 1 mg/kg/day divided into three doses. We are still holding our breath that he continues to improve on this higher dose. BTW, his cerebral spinal fluid showed low MTHF, his serum folate was normal, and his blocking antibodies on Dr. Quadros' test were low positive.

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So you think Leucovorin helped with anxiety and OCD? That would be very cool! We are first increasing DD's methyfolate slowly to 15 mg and if that doesn't help we're going to take her off the methylfolate and try the Leucovorin instead. Or, I suppose we could try a mixture. One thing we have not yet checked is the COMT gene. If DD is COMT +/- then she may do better with Leucovorin because it does not add methyl groups directly into the system.

 

From what I understand the tiniest tweaking in Leucovorin can make a huge difference.

 

So his blocking antibodies are low positive and binding antibodies are negative? My DD's blocking antibodies are negative and binding antibodies are low positive. Is he 677 or 1298 MTHFR? Homozygous or heterozygous? Did you ever try methylfolate to treat or did you go right to leucovorin? Did he experience any side effects? What kind of improvements are you seeing? Thanks!

 

My son has been on Leucovorin (folinic acid) for the past 7 months. We have only recently begun to see benefits after his dose was increased to 1 mg/kg/day divided into three doses. We are still holding our breath that he continues to improve on this higher dose. BTW, his cerebral spinal fluid showed low MTHF, his serum folate was normal, and his blocking antibodies on Dr. Quadros' test were low positive.

 

I'm sorry that I almost missed this post. Yes, my son had low levels of blocking antibodies but no binding antibodies. He was tested several years ago for the MTHFR mutation and he was negative. We are not sure what precipitated the cerebral folate deficiency but it's suggested that it resulted from some autoimmune process. We don't know for sure how it is tied into his PANDAS or autism diagnoses but there probably is some relationship. Plasmapheresis was tried for quite awhile but it was not helpful. The biggest improvements were seen from a prednisone burst trial and then more recently from therapeutic dosages of Leucovorin. His many symptoms are less severe but they are not gone yet. The severe movement symptoms, gait problems, eye symptoms, sensory sensitivity, anxiety and OCD are improving. There is still more tweaking to do to return him to health. Yes, we did try methylfolate((Deplin) briefly but went back to Leucovorin on the advice of his neurologist plus Leucovorin was covered by our insurance plan and methylfolate wasn't. We have not seen any adverse side effects from either.

 

I am less inclined to say that the Leucovorin, in particular, is helping with the anxiety/OCD component of his symptoms. I would attribute the modest improvement in anxiety and OCD more to the klonopin that we started prior to his increased Leucovorin dose.

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Thanks!

 

Which step in the pathway is the folinic acid, do you know?

 

 

From what I have read in the study they are prescribing 2 mg/kg Leucovorin divided into two doses (maximum 50 mg daily). The dose was increased over a 2-week period.

 

Yes, there is a difference between folinic acid (5-formyl tetrahydrofolate) and methyfolate and I hope I can explain this accurately.

 

There are 4 steps to converting folic acid into L-methyfolate: folic acid > (1) dihydrofolate > (2) tetrahydrofolate > (3) 5, 10 methylene THF > (4) 5-methyfolate.

 

So folinic acid is one step in the conversion process. Those with heterozygous 677 MTHFR may have difficulty converting folic acid into L-methylfolate and those with homozygous 677 MTHFR will have greater difficulty converting folic acid into L-methyfolate. Ordinarily you would give L-methylfolate, rather than folinic acid, to an individual with homozygous 677 MTHFR in order to by-pass the whole conversion process. However, if the individual also has a positive folate receptor (FR) blocking antibody (meaning an antibody that blocks the binding of folic acid to the folate receptor) or binding autoantibodies against the folate receptor (this is abnormal), this presents an additional problem. And, if there is a COMT mutation this may further complicate the process. This is where I start to get lost and am trying to figure it out.

 

Perhaps someone else might want to add to this?

 

I have read about doctors dosing at 1 mg/kg. My son is 100 pounds, so that's 45 kilograms. Is that the kind of dosage you are talking about? We saw great results with reducing/eliminating anxiety and bedwetting at lower dosages, but those tics and that low-level OCD just won't go away.

 

Also, is there supposed to be a pharmacological difference between leucovorin and the OTC methylfolate supplements? Aren't they the same active compound?

 

Thanks!

 

So his blocking antibodies are low positive and binding antibodies are negative? My DD's blocking antibodies are negative and binding antibodies are low positive. Is he 677 or 1298 MTHFR? Homozygous or heterozygous? Did you ever try methylfolate to treat or did you go right to leucovorin? Did he experience any side effects? What kind of improvements are you seeing? Thanks!

 

My son has been on Leucovorin (folinic acid) for the past 7 months. We have only recently begun to see benefits after his dose was increased to 1 mg/kg/day divided into three doses. We are still holding our breath that he continues to improve on this higher dose. BTW, his cerebral spinal fluid showed low MTHF, his serum folate was normal, and his blocking antibodies on Dr. Quadros' test were low positive.

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