NancyD

I see much more even moods. DD can definitely feel it. I too am on L-Methylfolate for homozygous 677 and am at 7000 mcg/day. Recently I had surgery and my surgeon wanted me off all supplements for a week. During this time I was feeling very overwhelmed by stress. My left arm went numb for two days. After going back on my supps I did not feel so overwhelmed by stress and the numbness in my arm went away.

Yes, she is 677 homozygous. We started at 1000 mcg (she is adult weight) and worked up very slowly to 10 mg. That seemed to be optimal dose for her.

We always titrate up very slowly for all supplements because DD is very sensitive, but we took it particularly slowly with L-Methylfolate. She requires high dose at 10 mg so it took a while. B complex was a real problem for DD. It took me years to figure out that inositol was the ingredient that was causing the problem so we separate out the B vitamins she needs. She also had a problem taking B12 injections so she takes either the sub-lingual or nasal spray. Both inositol and B12 injections make her very dysregulated.

She did 1.5 first, followed by several monthly infusions at .4, .75, and 1 (jn that order). We were not able to recapture the initial success we had at 1.5 until we went back a year later and did another infusion at 1.5. I can only speculate that .4 might have aggravated her and 1 did not help. None of the infusions ever helped her anxiety/OCD. In fact, they made it worse. I believe her anxiety/OCD may have been caused by Bart, but we are still treating that so I can't say for sure. Interestingly enough though, we were told by Dr. K...at her age (12 at the time of her first infusion) not to expect IVIg to help her tics since they were the most difficult to eradicate. Yet was what we had the most success with.

I don't know the answer to your question but I want to caution you about Topamax as it can impair cognitive functioning, cause short-term memory loss, and it can be addictive. There is a reason clinicians jokingly refer to it as DOPAMAX!!

In terms of what has helped my DD most with calming her moods and racing thoughts, I would say Omega 3 and L-Methylfolate/M-B12/B6 (the latter for MTHFR.

I would put my DD in this category. She did well with initial IVIg infusion at 1.5 g/kg but then did poorly with subsequent lower dose monthly infusions (ranging from .4 g/kg to 1 g/kg. This was 5 years ago. In hindsight, I wish we had done one infusion and left it at that, perhaps do another HD infusion 6 months or a year later. In 2010 we tried 2 more HD infusions (one 30 days after the other) but they did not help at all. Shortly thereafter we discovered DD had other underlying infections that needed to be treated (MycoP, Lyme, Bart, etc.) plus she was homozygous for MTHFR. I have no regrets about doing IVIg as it gave us a solid year in remission. Plus (and this was a BIG plus), it completely eliminated DD's vocal and motor tics and they NEVER ever came back. It's been 4 years since she's had any tics. Wish I could say the same about her anxiety/OCD as that only got progressively worse. Treatments are so individual!

Both my DD and I had severe foot pain (bottom of foot) for years. I even had two surgeries -- one for plantar fasciitis and one for a heel spur. Neither helped the foot pain. I tried physical therapy and all sorts of contraptions. Turned out, it was Bartonella and the abx cleared up the foot pain rather quickly. Foot pain is a hallmark sign of Bartonella.

Is he on Omega 3? That can help moods. Same with N-Acetyl-Cysteine (NAC). Have you tested for MTHFR? My DD is homozygous for 677 and the combo of L-Methylfolate / MB12 / B6 helps enormously to even out her moods.

Had DD's rubella titers tested many years ago along with measles titers and they were both very high so we were exempt from MMR boosters. I also tested my own at the time (just out of curiosity) and they were equally as high.

Another excellent program to consider for girls is Timberline Knolls in Lemont, IL.

EAMom, 10,000 IUs is what DD took to raise levels and to maintain. We test every 3 months.

norcalmom, Yes, we monitor DD's D3 levels every 3 months. They have stayed at 65 for quite a while so I'm guessing that is what it takes to maintain. I am also at 65 (up from 35) and have been taking 5000 IUs/day for a couple of years. I am fully recovered from Lyme et al.

My DD17 started off with D3 levels at 4 and over the past 3 years has increased to 65. Once she hit 55 she stopped getting one infection after another. She takes 10,000 IUs D3 daily.

My heart goes out to you, FallingApart! I agree with so many of the suggestions here but I will offer a little different perspective...for what it's worth from someone who has been on this journey for over 15 years. I put this in the "I wish I had known back then what I know now" category. My DD17 is about to be discharged from a residential program halfway across the country. Although we speak daily I have not seen her in almost 3 months. I miss her terribly but she is getting really excellent help where she is. Her primary diagnosis is PTSD -- so much of the trauma she suffered stems from having PANDAS, Lyme, et al her entire life. For years I expressed concern to her therapists about the psychological damage from the violent rages, OCD, tics, and many other symptoms she suffered for so long. I was told not to worry. Our children are exposed to trauma day in and day out. We just don't always recognize it because they appear to bounce back quickly. The bullying; difficulty in making or keeping friends; days, weeks, or months of missed school and activities; constant visits to the doctor; sleepless nights or unable to sleep in their own bed; not wanting to be touched or feeling overwhelmed at the slightest bit of stress; the remorse they feel after destroying the house or abusing a sibling, friend, or parent; years of invasive tests and treatments; taking so many pills a day; constant discussions about their illness; wishing they could live a normal life; and the list goes on. In addition to looking for and treating the underlying infections I would encourage you to deal with the psychological pain your child feels now. A good therapist who has expertise with children and trauma (there are lots of good ones out there) can help your child deal with those feelings that often get swept under the carpet for so many years. The psychiatric facilities in this country are a mess and so many of our children have experienced further trauma at these facilities. My DD included. We had to go halfway across the country to find a good facility that could handle her complex medical condition and could give her the tools she needs to deal with the trauma and other co-occurring issues (social anxiety, OCD, and eating disorder). Thank goodness we found it, but oh how I wish we could have dealt with the trauma so many years ago! If I could save just one child even 20% of what my DD suffered...

Even for those families who are NOT dealing with Lyme, I highly recommend this book. If only I had a book like this 15 years ago when I first started on our PANDAS journey!

We also use C in high doses but as Susan commented it's not enough. We also use NAC, milk thistle, curcumin, alpha lipoic acid, omega 3, allithiamine, Epsom salts baths, saunas, water w-lemon, and glutathione IVs to help detox.

"Oral contraceptives impair folate metabolism and produce some degree of folate depletion'". http://mthfr.net/mthfr-mutation-oral-contraceptives-not-recommended/2012/03/16/ Why is that? I haven't used any birth control w/ my daughter, but doctors sure are recommending a lot.

May want to consider something other than birth control pill if DD has homozygous MTHFR.

Homozygous 677 puts you at risk for strokes and blood clots -- particularly adults who have elevated homocysteine levels. Just curious why you are at risk of clotting?

Ifran, Please keep in mind, treatment must be tailored to the individual. For DD17 she is taking L-Methylfolate (she needs high dose to regulate her moods), Allithiamine/B1, Riboflavin/B2, B6, Methylcobalamin/B12, and Manganese. She cannot take B-complex as she reacts badly to Inositol and I don't want to give her folic acid. I take L-Methylfolate (not as much as DD), Methylcobalamin/B12, and Lumbrokinase Boluoke (to prevent clotting). I already get B vitamins in Ultra Preventive III. Nancy

CrissyD, I just PM'd you.

Smartyjones, he is treating both of us for homozygous 677.

We have been seeing Ken Bock for 12+ years. He treats DD's PANS, Lyme, Bart, MycoP, MTHFR, etc...and my Lyme, Bart, MTHFR. He is excellent!!! Feel free to PM or email if you have any specific questions.

FWIW, I used GP a few years ago to test DD for KPU and I was very suspect about not having to stop supplements. I already knew her zinc levels were exceedingly low and I saw what a difference zinc made for her. She did not come out positive for KPU. In hindsight I wish I had done ours at European Labs but I was trying to avoid stopping the zinc.