Guest guest Posted July 12, 2012 Report Share Posted July 12, 2012 Tammy - yes, my pans kid has this. But so does his non-Pans twin. They both have lyme Havent tested the rest of us. But, definitely good to test for. We Tried the Leucovorin without any change. We are now taking large dose 5-mthfr. HTHRuthSent from my iPhone is and other families dealing with PANS / PANDAS symptoms I just watched a presentation by Dr. Neubrander and read another by Dr. Rossingol - both made mention of Folate receptor autoantibodies symptoms overlapping with PANDAS / PANS symptoms. Could be way off, but figured it's worth a mention. Tammy Sent from my Kindle Fire Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2012 Report Share Posted July 12, 2012 Tammy, Your post reminded me that I am a horrible person. I promised everyone on the list that I will be sharing the important points that I learned at the conference and never really got to it. But now that you have mentioned the CFD, I am motivated again and this weekend I will share some points that I thought would be helpful for everyone and a lot of you may actually know those points already as I am still lagging behind. My son has cerebral folate deficiency and I have tried leucovorin and cerefolin but both made him crazy. Before we found out that he has the antibodies positive, I had him on 5MTHF. When I first started 5MTHF, I immediately saw better focus, eye contact and improved performance overall. I was using Thorne brand then. Then I switched to Prothera and didn't see any more benefits. At that time we got the Quadros result and tried the cerefolin and then leucovorin. He actually got extreme hyperactivity on those. So finally, I decided to give 5mthf another try and this time tried Thorne. At the autism one conference, 5mthf was discussed a lot as it not only provides the folate but reduces neopterin and thereby reduces inflammation. As you know that my son has been going thru a lot in the last few months(even though he has improved in some aspects also), 5mthf really did help him. It definitely reduced inflammation. I am still on 1000 mcg a day but plan to increase it asap. It actually gave me better results than advil. So my feeling is that a lot of docs are now recommending leucovorin and cerefolin, one should try different forms if one is not working and for me 5mthf has been the best as it is acting as an antiinflammatory as well. Thanks is > > is and other families dealing with PANS / PANDAS symptoms > > I just watched a presentation by Dr. Neubrander and read another by Dr. Rossingol - both made mention of Folate receptor autoantibodies symptoms overlapping with PANDAS / PANS symptoms. > > Could be way off, but figured it's worth a mention. > Tammy > > Sent from my Kindle Fire > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2012 Report Share Posted July 13, 2012 is,You are NOT a horrible person! You're a mom trying to raise a family and conquer this freaking mess all at the same time.I am, in fact, so happy you left this post. There's a mom on a fb group who said her son is on day 8 of Leucovorin and is losing his speech.I'll give her the heads-up.Thanks!Tammy To: mb12valtrex Sent: Friday, July 13, 2012 1:37 AM Subject: Re: PANS/PANDAS & CFD Tammy, Your post reminded me that I am a horrible person. I promised everyone on the list that I will be sharing the important points that I learned at the conference and never really got to it. But now that you have mentioned the CFD, I am motivated again and this weekend I will share some points that I thought would be helpful for everyone and a lot of you may actually know those points already as I am still lagging behind. My son has cerebral folate deficiency and I have tried leucovorin and cerefolin but both made him crazy. Before we found out that he has the antibodies positive, I had him on 5MTHF. When I first started 5MTHF, I immediately saw better focus, eye contact and improved performance overall. I was using Thorne brand then. Then I switched to Prothera and didn't see any more benefits. At that time we got the Quadros result and tried the cerefolin and then leucovorin. He actually got extreme hyperactivity on those. So finally, I decided to give 5mthf another try and this time tried Thorne. At the autism one conference, 5mthf was discussed a lot as it not only provides the folate but reduces neopterin and thereby reduces inflammation. As you know that my son has been going thru a lot in the last few months(even though he has improved in some aspects also), 5mthf really did help him. It definitely reduced inflammation. I am still on 1000 mcg a day but plan to increase it asap. It actually gave me better results than advil. So my feeling is that a lot of docs are now recommending leucovorin and cerefolin, one should try different forms if one is not working and for me 5mthf has been the best as it is acting as an antiinflammatory as well. Thanks is > > is and other families dealing with PANS / PANDAS symptoms > > I just watched a presentation by Dr. Neubrander and read another by Dr. Rossingol - both made mention of Folate receptor autoantibodies symptoms overlapping with PANDAS / PANS symptoms. > > Could be way off, but figured it's worth a mention. > Tammy > > Sent from my Kindle Fire > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2012 Report Share Posted July 13, 2012 is,Are you doing the mb12 along with the folate?There's a few CFD smarties who say this is required with the 5mtfh to avoid the methyl trap.Tammy To: mb12valtrex Sent: Friday, July 13, 2012 1:37 AM Subject: Re: PANS/PANDAS & CFD Tammy, Your post reminded me that I am a horrible person. I promised everyone on the list that I will be sharing the important points that I learned at the conference and never really got to it. But now that you have mentioned the CFD, I am motivated again and this weekend I will share some points that I thought would be helpful for everyone and a lot of you may actually know those points already as I am still lagging behind. My son has cerebral folate deficiency and I have tried leucovorin and cerefolin but both made him crazy. Before we found out that he has the antibodies positive, I had him on 5MTHF. When I first started 5MTHF, I immediately saw better focus, eye contact and improved performance overall. I was using Thorne brand then. Then I switched to Prothera and didn't see any more benefits. At that time we got the Quadros result and tried the cerefolin and then leucovorin. He actually got extreme hyperactivity on those. So finally, I decided to give 5mthf another try and this time tried Thorne. At the autism one conference, 5mthf was discussed a lot as it not only provides the folate but reduces neopterin and thereby reduces inflammation. As you know that my son has been going thru a lot in the last few months(even though he has improved in some aspects also), 5mthf really did help him. It definitely reduced inflammation. I am still on 1000 mcg a day but plan to increase it asap. It actually gave me better results than advil. So my feeling is that a lot of docs are now recommending leucovorin and cerefolin, one should try different forms if one is not working and for me 5mthf has been the best as it is acting as an antiinflammatory as well. Thanks is > > is and other families dealing with PANS / PANDAS symptoms > > I just watched a presentation by Dr. Neubrander and read another by Dr. Rossingol - both made mention of Folate receptor autoantibodies symptoms overlapping with PANDAS / PANS symptoms. > > Could be way off, but figured it's worth a mention. > Tammy > > Sent from my Kindle Fire > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2012 Report Share Posted July 13, 2012 Yes, I am using methyl B12 shots every other day also. Another thing that is helping is custom probiotics. I saw some improvement on day one. I have realized that my son cannot handle antiyeast treatments so now I am trying to manage die off better. is > > > > is and other families dealing with PANS / PANDAS symptoms > > > > I just watched a presentation by Dr. Neubrander and read another by Dr. Rossingol - both made mention of Folate receptor autoantibodies symptoms overlapping with PANDAS / PANS symptoms. > > > > Could be way off, but figured it's worth a mention. > > Tammy > > > > Sent from my Kindle Fire > > > Quote Link to comment Share on other sites More sharing options...
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