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I have searched this topic on this forum and read and reread. I was hoping someone could weigh in and maybe give me some insight on natural ways to treat these mutations in children with PANDAS/PANS, ADD, ADHD...

 

COMT V158M ++

COMT H62H ++

VDR Bsm ++

MAO A R297R ++

MTHFR A11298C ++

 

VDR Taq +/-

MTR A2756G +/-

BHMT-08 +/-

CBS C699T +/-

 

 

"Methyl" confuses me....over/undermethylated, donors etc. From what I understand they can't tolerate donors?

 

They have chronic sinusitis, ear infections, HSV, Epstein Barr, yeast. Anything we treat makes something else worse. I am beginning to think its because they can't detox anything with these pathways.

 

We have tried A LOT of supplements that cause adverse reactions...increase anxiety, OCD, ADHD etc. Looking back they were almost all methyl donors. Enhance, GSE, Pycogenol, Vayarin, Fish Oils.

 

We are going crazy with the lack of focus and control in the house. We have twin 8 year old boys who feed off each other and my poor DD turning 13 tomorrow. She just wants to leave its so crazy. They are all diagnosed. Would Phosphodicholine (sp?) be a good next move?

 

ANY suggestions would be GREATLY appreciated.

 

Thanks

 

Jen

 

 

 

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Hi, I know of something you could read that may help make more sense of the genetics and may help you sort out which direction you should go with supplementation. I'm an alum of Dr. Amy Yasko's protocol having done that for my son five solid years. I'm positive that helped save him from what could have been a rather miserable life before finally recently learning that PANDAS is the correct diagnosis. One of her books is available free for download at http://www.dramyyasko.com/ then find the little blue link at the bottom of the page that says, "Get the Book". It will download as .pdf immediately upon clicking and you can view from the internet. It is not her most recent book but it is still very relevant. Please look beyond the "autism" title - that isn't what it is all about.

 

One part in particular you may like to see beginning around page 139 of the book is a good explanation of MTRR and MTHFR the role of B12 and methyl groups. Actually, this book has explanations of all of the mutations you listed plus others. As you mention, people with COMT+/+ cannot easily handle methyl groups. But until you get enough consistent B12 levels (which are probably low due to your MTR) it is difficult to introduce methyl groups at all. Due to the difficulty in using methyl groups you'll want to use hydroxycobalamin instead of methylcobalamin. There are also cyanocobalamin patches available. The patches are very effective so if you choose to use the patches cut small slivers at first and work up to a quarter, half, then whole patch. It takes a while to get past the problems that ensue when you begin to give the body something it desperately needs (like B12). It took months to get my son in a place where he was not detoxing from the tiniest amount of it. But we got there. Low and slow wins the race in this case.

 

I know that saying it is "difficult" to deal with the adjustment periods giving new supplements is an understatement. I thought it was bad enough dealing with it with one child so I can't imagine more! You may want to first start with calming supplements - GABA, magnesium citrate, valerian root extract are the first that come to mind that really helped us in the beginning. The book I referenced will have info about these, too. When implementing the YASKO protocol, it is recommended to get calming supplements in place before introducing things that may create havoc, as B12 will most certainly do. It is also recommended to only start one thing at a time and start with very, very small amounts and work up.

 

Anyway, I think the book will help you understand the mutations better and what you can do to provide support despite having the mutations. There is a link to the Yasko-specific discussion group on the link I gave you above. It is an overwhelming amount of information re: genetics and supplementation to support the mutations, but just start at the basics and eventually it all starts making sense.

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I just thought of something else re: the chronic sinusitis and ear infections. Have you ever tried using xylitol/saline nose spray? This stuff changed our lives. DS had recurring sinusitis until I learned of using the nose spray. The brand I have used is Xlear. Before the nose spray, if he got a cold or if allergies caused a runny nose, then he WAS going to end up with a sinus infection. After I learned about the nose spray, I use it liberally throughout the cold or allergy runny/stuffy/sneezy nose period and voila - no secondary infection! They xylitol works like cranberry does with preventing UTIs - it prevents bacteria from adhering to the nasal passage walls. DS has never had ear infection but I understand the nose spray helps with that, too.

 

RE: yeast - the best stuff I've used is what I'm using now: Core Berberine Blend and Biocidin. Biocidin packs a punch as it is a powerful antimicrobial. When I first began using it I think I started with 3 drops and whoa we had some major microbial detox regardless of the fact that he had been on antibiotics for a couple of years. I wasn't expecting that much die-off and had to back off to one drop per day for awhile before working up to the 6 drops we use now. He was on daily Rx antifungals before switching and I think the Core Berberine blend and Biocidin are working better than the Rx ever did.

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COMT and MAO-A both degrade adrenaline. So being +/+ means they are staying ramped up on adrenaline in stressful situations far longer than the other people around them. They're in fight/flight or worrier mode. This makes it way harder to concentrate on tasks and way harder to control aggression and anxiety.

 

Phosphatidylcholine and/or phosphatidylserine can be helpful for adhd symptoms - phosphatidylserine really helps my COMT +/- and MAO-A +/- son. He's taken it for years. But...he does not have any CBS issues the way your do. I can't find info on whether PS or PC contain sulfur and if this would be an issue.

 

I used to give PC to my DD who is COMT +/- and CBS +/- and MTHFR +/- and it helped with some tremors she was having. But when she was under tons of stress from mold illness, it ended up causing huge anger and aggression issues because it was over-stimulating the amygdala - which increases attention but also increases "survival aggression" and she reacted as if she were being attacked by a tiger.

 

So I guess I'd say try it - you may like what you see. But start low and move up slowly. and put a tickler in your calendar to re-evaluate every few months. Sometimes what works great at first needs to be reviewed later.

 

The best thing I've found for COMT and MAO combos is niacinamide (vitamin B3). Niacin helps COMT degrade adrenaline faster and is great for anger issues that are triggered by this genetic combo. I started with 50mg and increased to 100mg - use niacinamide or "flush-free niacin". Regular niacin dilates the small blood vessels and causes them to open, causing the skin to blush and releasing histamine, causing itchiness. It's harmless and temporary (lasts 20 min). But it's uncomfortable and who needs extra histamine? Niacinamide works the same, for the purpose you'd be using it for, and avoids the flush. Niacin is a methyl-taker and is a great antidote if you're an overmethylator and have too many unused methyl groups floating around.

 

Copper helps MAO-A spin a little faster, but you need to periodically measure copper/zinc ratios if you decide to supplement. They are ying/yang and zinc is essential to the immune system, so you don't want to make this ratio get out of whack. You also want to avoid cough and cold meds and anything that says "do not take if you use an MAO-I or MAO-inhibitor. Their MAO is already inhibited, so avoid meds that inhibit this gene further.

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Thank you!! Does the Berberine or Biocidin kill off good bacteria also?

 

I started Vayarin (PS) and one of my son's (the one that doesn't have OCD or anxiety) started with big time OCD....thoughts in his head, repeating everything someone says and asking a ton of questions. I am stopping it tomorrow to see if it subsides.

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Both Berberine and Biocidin are geared toward GI microbiome balance, so they shouldn't kill everything. My DS is on Augmentin XR as well so everthing is being wiped out, but the Biocidin and Berberine have definitely helped keep yeast in check and that has been a lifelong problem. He also takes a lot of probiotics everyday.

 

Re: the constipation, magnesium citrate is great for that, too. You may find the dual effect of constipation relief as well as a calming effect.

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