yep - we were definitely using too much MTHF-5

[Hopeny]

I said I would post an update, I think it's been two weeks but I tend to lose track of time, based on LLM's (thank you) posts I decided to reduce DD's MTHF dose from 5 MG/day down to the best I can approximate <1 MG every other day. Skin picking almost gone. (this had gone almost right away when she started with Dr B and I now realize it crept back around the same time as starting MTHF), anxiety seems much better, OCD blip (getting coat on for school 15 minutes before time to leave) is gone. Friendships, wanting playdates etc up. Even talked to me tonight for more than 2 minutes. I'm seeing a definite difference. I've added an herbal anti microbial this weekend (Samento) for Lyme and after I ramp that up I am going to try upping NAC, we are at 300 right now. I thought NAC was causing problems but now I am thinking not. I'll post updated when we get further with NAC. I also cut down on Vitamin D3, we had a huge amazing difference with it at first but DD's level is up to 60 from 29, and it seems if I give her the 1,000 MG every day it causes some anxiety, so I am only giving a couple of times a week.

Edited February 4, 2013 by Hopeny

[LNN]

Yay! No experience with Samento but I understand it can pack a wallop. Good luck!

[Dedee]

I would have to agree. I have gotten many mixed suggestions about methylfolate. Most have been to give very high dosages. But I have found that my kids do better on lower doses. Only one of my kids who has a double mutation gets a higher dose and that is only 2mg per day. My daughter gets 400mcg per day and my oldest son gets 800mcg per day. They seem to do well on this. It's a very grey line and a balancing act for sure.

 

Dedee

[_Misty_]

Glad to see this update! We are in the middle of determining if too much 5 MTHF caused my daughter's current flare. She was on 5mg, too. She has been totally off of it a week and we haven't seen any improvement - actually, she seems to be slowly getting worse. We've done 2 doses of niacin last week. Now I'm thinking of doing another niacin dose. I've ordered a lower dose (400mcg) to start her on as soon as it gets here. How quickly could you see improvement after lowering her dose? I'm really hoping that's our problem.

[_Misty_]

double post

Edited February 4, 2013 by .Misty.

[Hopeny]

Misty at first she went 3 days without any supps and she seemed worse. Then I put back everything and took her off MTHF, the skin picking stopped I think within 48 hours. I put back the tiny dose every other day. This seems to work best for us. I also cut back on D3 a few days later. Things are not perfect but they are much better. In the beginning the MTHF seemed miraculous, but then I guess it was just too much. DD has only one copy 677T.

 

off topic: LLM I am going super slow with Samento, I have read/heard so many good things I am compelled to try it. I am building up a week at a time, starting with one drop this week. Day 3, so far so good. I am trying to use more Burbur and Parsley detox, but spacing out probiotics/antibiotics and samento/detox is not fun. I am hoping to get to 4 drops. I want to take DD off antibiotics for the summer and use only naturals to see what happens. From there, I will consider IV if things go bad. I also bought some Cumanda but I may chicken out of using it. I feel like I can manage the PANDAS flares with abx but I really want out of Lyme