LNN

I think it's more likely there's an additional infection that isn't being hit by current abx or a yeast infection or a negative response to the "other things" you're using. In my own experience, there's always been an underlying cause to the OCD - not "just regular OCD" My son is fighting a current bout of OCD which we suspect is yeast. My daughter has had OCD-like anxiety (but no compulsions) due to mold, methylation problems and a chronic infection we never named but tracked by following rises and drops in her C3d immune complexes. Is he still on minocycline? What are the other things you're using? And don't forget the value of CBT and ERP as a support tool, regardless of medications. Perhaps if you can share more details, others can help you brainstorm.

Try this link http://forums.phoenixrising.me/index.php?threads/documents-by-rich-van-konynenburg-parts-1-7.11488/ It seems identical to the one orion posted but it didn't work for me either. It looks like that one might have a space at the end of the link and maybe that's what was causing it to fail.

IMO, you need an experienced LLMD (lyme literate MD) more than a Pandas specialist. Some use both and very often, you need more than one doctor on your team. But if you're starting out, my suggestion would be to start with an LLMD. Having multiple chronic infections (lyme, Bartonella, myco p, HHV6) will require combo abx plus detox support. It will not be a simple or quick journey. Pandas doctors are great for helping Pandas patients. But the complexities and honestly, the bizzareness, of lyme requires someone with a lot of experience. You can contact ILADS.org or post where you live and ask for a referral. Just my personal experience, but a herx often produced an increase in the very symptoms we were trying to treat in the first place. Sometimes, lyme symptoms aren't produced from the living lyme bacteria but rather by the toxins the bacteria releases when it dies. So you'll have symptoms when the immune system kills lyme and you'll have worse symptoms when you add the right antibiotic (abx) and it teams up with the immune system to kill a higher quantity of bacteria. So you can't dismiss the possibility of a herx simply because it causes the very symptoms that led you to treatment. That's what a herx is - a worsening of symptom intensity - not necessarily a new set of symptoms you've never seen before. At least, that's been my experience.

Yes, there is absolutely healing. I believe that all of the things I've unearthed in this long journey will help my kids improve their health far into the future. But as I understand the impact of MTHFR C677T, it isn't as a detox problem. C677T impacts cell energy (in playing a role in the synthesis of ATP) and heart health (and the creation of homocysteine). Indirectly, it can also play a role in moods by impacting the synthesis of SAMe. The genes that more directly impact detox - the transsulfuration pathway - are CBS and SUOX. HLA-DR genes can also play a role, especially in mold and chronic lyme illnesses. And even then, by helping the body around these roadblocks (with specific supplements and avoidance of certain foods), you can certainly lead a health, productive and happy life. But I don't think C677T means you can't detox. And mo matter what your genetic status, you need to fight chronic infections like lyme with a multiple tool approach - killing bacteria, viruses, biofilms, eliminating metals while also supporting the body, healing the gut, reducing inflammation.... it's a long, slow process. It's suppressing/killing on one hand but also building and strengthening and cleansing on the other. I think when you first get hit with all of this, you feel like you've fallen down a very deep well with no way out. But it does get better and yes, the kids do get healthy and can even take the lessons learned in this struggle and apply them to the rest of life. The problem with forums is two fold - first, you get lots of well meaning advice but none of us will know your full story and we don't have medical degrees. Second, as our kids get better, we leave forums and rebuild lives. So the view on a forum is always skewed toward illness. I would certainly treat C677T but I wouldn't consider it a sentence to a life of misery. Just a hurdle that will require some self-education and customized vitamin/diet regimen that will ultimately improve health.

Yes, I was wondering if you knew of an association with bumps on the face and yeast too. DS has had bumps for several months and I just attributed it to "winter skin" stuff. I'll let you know on the enhansa. Fingers crossed it does something. The week that DS returns to school, he takes a grade-wide state cognitive assessment test. He didn't do very well when he took it in 3rd grade and it's been my goal for the past 2 yrs to get him healthy so he could shine/redeem this time around. Doesn't look like that will be happening. He was so good just a few months ago. I actually thought we were almost done. In the words of Spongebob "Why must the Universe confound me so?!"

I don't know what the percentage is - but really, odds/percentages don't matter. Only your unique results matter when it comes to knowing if something will be "good" or "bad". Last year, 23andMe was still too pricey for me to consider (they only dropped the price in december). So I started by only treating MTHFR. They tell you this is a big no-no of you have CBS+ and I understand why. But...in real life, with a crazy child in your house, you do what you can. Ideally, you'll eventually find out if you have CBS and you'll have much more custom info to use in your decision making. But sometimes you need to do the best with what you've got and help a child in crisis. What I'd do, knowing what I know now, is I'd look at the list of good/bad supps if you have CBS http://www.heartfixer.com/AMRI-Nutrigenomics.htm#CBS:%C2%A0%20Cystathionine%20Beta%20Synthase and either avoid those things or use them in low doses. I gave my DD Core for several months - turns out this was a bad thing, as she has lower tolerance for P-5-P and I also gave her a multivitamin for years - also a bad thing since it had regular B6, regular folate, regular B12....but while it probably added to her burden, it was in low enough doses that she still managed to function. So yes, you'll screw up. But I'm not sure it means you should do nothing. Just be cautious and slow. (interestingly, DD always whined about having to take Core - said it tasted bad - I should've listened to her). Likewise, we can all give our experiences of whether you should jump in at full dose or build up. But your child's experience is the only one that matters. I think building up is wise for only one reason. Let's say your magic "sweet spot" dose is 400mcg. The only way you'll ever know that is to cross the line and dose at say, 800 mcg, - see a bad reaction, and back down to the dose just before the bad reaction. You can find this sweet spot by starting at 100mcg - no change. Then 200 mcg a little improvement 400mcg - nice stuff happens 800mcg - bad stuff back to 400 - nice stuff. Or you can start at 800 - but if you see bad stuff, is it because it's made no change from the h**l you're already in, so you need more? Or is it because your starting dose is too high and you need to back down? Jumping in at a "typical" treatment dose doesn't let you know if you need to go up or down if you don't happen to see the good stuff you're hoping for. The advantage of starting low is that you can only move in one direction - up. And then you can assess whether an increase is good or bad. JMO - having screwed it up in my own home and having to stop completely for a week to drain the swamp and start over at a low dose (67mcg) which turned out to be my daughter's sweet spot (not the 400mcg I started with). It's for this reason that I'd suggest using separate supplements and not methylguard to begin with. You're better able to tweak the dose of each ingredient separately and then maybe later, once you know your sweet spots, see if you can find a combo product that suits your needs. I've found thorne, holistic health (Yasko's co.) and source naturals to be my best sources - often in liquids while groping around for that ideal dosing (drops allow better control while titering up)

jtp - we are in a similar situation. My DS has had simmering issues (not full flare) for about 7 weeks. We did a blood test for candida yesterday and its high in the list of likely suspects. I stopped all abx last week but then DS got a cold and he started feeling like "a mistake" and that maybe he shouldn't have been born. So I immediately broke into my emergency stash of augmentin because I didn't want to risk having a snotty sinus cavity turn into a strep incubator. Once we're done with 10 day regimen on Saturday, I'll stop the abx and he'll be abx-free (that's the plan anyway). Because it seems counterproductive to fight yeast while on abx and since I think the behaviors (mostly anger, adhd, unaware of how his actions are p*ssing people off) point toward yeast, it seems worth a trial of no abx to see if we can make headway. Heaven knows being on them wasn't resolving things. Like you, our spring break is next week and I'm waiting until tomorrow to start enhansa (and garlic) because past herxes have cost him friendships. Better to ruin a stay home vacation than risk irrational behaviors at school. Fingers crossed for you. Our past yeast herxes have only lasted a week or so. But it's nearly impossible to know if you're on the right track when in the middle of the storm. Is this h**l a herx or is it Pandas or lyme or something else? I've only been able to remind myself of what the evidence suggested and hold my breath. But usually, when we've been in the right path, I've seen signs within 2 weeks. If not, I tend to look for other things. It's very frustrating. I can't comment on the BMs - DS doesn't let me inspect them anymore and he doesn't look. The other night, I asked him if his stools were firm and he looked at me like I had two heads. "How should I know?" he asked. My DH said "don't you look at your own poop?" DS said "No! that's gross" to which I told him that I thought everyone did - dogs, people...that you could tell things about your own health by being a poop-ologist. He just made a mental note that this was yet another story he could write in his memoir about his nutso mom and his crazy childhood.

OMG - I so need to get a life! No balloons, certainly no one offering me a vacation! I've at times had to eat crow but not cake. Sheila did send me a medal (vie email graphic) for being a smarty pants the other day, but it was in response to the video, not because I had reached such a "milestone" in dweebness. Sorry about the behavior tech - that's the kind of response that makes you secretly pray that she (or he) ends up having to raise a challenging child just so they can have one of those "OMG I had no idea!" moments they so need and deserve. I sometimes think maybe I should start a side business where I sell voodoo dolls - one dressed as a principal/teacher, one as a doctor, one as an in-law. They'd come with a dozen hat pins so you could inflict vicarious pains to pay them back for the very real headaches they brought to your life. DCMom - like you, I once worried about one child suffering the consequences of being the "healthy" child and not getting as much attention. But the universe balanced things out, conspired to bless her with issues of her own, and now, she's right there in the thick of things, demanding her fair share of attention. Oh joy! As I might have told you or you might have guessed from recent posts, DS has been dealing with some subclinical OCD for about 7 weeks. Testing for yeast today. But saw the LLMD yesterday and he's having us try some stuff. If it works, I'll be sure to let you know. Sometimes I think that just when we start to think the finish line is in sight, we're dealt these setbacks to keep us humble and not take things for granted.

This talk is by a woman who had two brothers. One had severe autism and the other died as a young child. She talks about being the "good" child who didn't feel she was allowed to have problems or add to her parents' burden. She felt like she was made of glass - not fragile, but rather, someone who people "looked right thru", as if she were made of glass - invisible. In her talk, she doesn't blame the parents. But she talks about the importance of having other adults who can make a child feel visible again, remind them that they count too. A lot of us struggle with this, trying to be there for the healthy (or less sick) child yet having the ill child demand all we have to give. I don't post this as a guilt trip but rather a reminder that it's important to let other adults help us in times of crisis, especially if they can be there to prevent a glass child and be a one mile per hour wind http://tedxtalks.ted.com/video/TEDxSanAntonio-Alicia-Arenas-Re

epstein barr is a herpes virus (HHV-4). Cold sores are HSV-1. they are related and both can be treated with l-lysine. If you mean HSV-2 genital herpes, I don't have any information on that particular virus but here's a brief write-up that indicates it may help during an outbreak http://www.umm.edu/altmed/articles/herpes-simplex-000079.htm

I give l-lysine with antibiotics. Never really googled but I never gave it much thought. One is antibacterial and one is antiviral. L-lysine is an amino acid that can be found in foods. I've given it at both times of the day and don't think it much matters. I don't believe it ever interfered with sleep.

Given the abrupt response, I'd look for mold or other environmental allergy. If you have a finished basement, older rugs or rugs that may have pet stains, older bathroom, if you've ever had a leaky window or door casing where water got in - even for just a day or two...if you have a cluttered basement of junk, damp cardboard boxes. We found some mold in our attic right under the roof where the bathroom stink pipe vented out of the roof - the flashing had leaked and allowed water to drip onto the fiberglass insulation. I also found a lot of mold growing on the plastic outer drum of my washing machine.

Rowingmom - DD is my Pans-maybe kid. She doesn't get true OCD. She gets the intrusive thoughts/obsessively stuck on a worry but doesn't have a compulsion/ritual to alleviate the anxiety. So for her, the moods that come with allergy season are just basic b**chiness and PMS moods that come from feeling miserable. If we have a few low pollen days, she calms down. So for her, it's a result of high histamine, not something I'd call a PANS response. The symptom improvements I saw from shots were that her allergy symptoms went from a 1- (can't leave the house, eyes literally swollen shut from swelling, can't breathe, itchy) to barely any sign of allergy. As a consequence, there were no mood issues either. But when I used the word "symptoms" I was referring to allergy symptoms. As for the money for therapy - yikes! The sublingual drops we're getting from the ENT (yeah, ENT - who knew?) are $67/mo. When we did shots, the serum was $600 and lasted about 6 months and the shots were $100/mo because Dr B was the ordering allergist and we weren't about to drive 2 hrs ea. way ea. week to get a shot. So we had to pay a VNA nurse to administer. But $400/mo? That's a big chunk of change to come up with. I think I have what's probably a controversial view of food and allergy testing. I personally could never fathom going GFCF (in awe of those who can). But I tend to think that if you test positive on a zillion things it may be more that you have a leaky gut and your body is producing all sorts of antigens to things it would normally be able to tolerate if those foods stayed encased in the gut where they should be. That maybe it's only when those food enzymes cross the gut barrier and seep into the blood stream unprocessed that the body sees those things as invaders and produces antibodies against them. Close the leaky gut and you might not be "allergic" to those foods anymore. So I see some of it as temporary food intolerance more than true food allergy (tho I totally believe in true food allergies - I just question what's really going on when you seem to be allergic to everything on one of those tests).

We treated epstein-barr with l-lysine and also use l-lysine for cold sores. Our LLMD had tried artimisinin for two 3-week cycles but ti did nothing for DD. Then I tried l-lysine (with LLMDs ok) and saw improvement within days. We used one capsule/day for three weeks and then I tapered to every other day. Part of me wanted to go a little longer to make sure it was gone, but l-lysine can eventually suppress tryptophan in the gut and cause stomach issues, which DD also had at the time. So I stopped at the slightest hint of anxiety. But if I weren't so PTSD from this journey, probably could've done it a little longer. But after 3 weeks of l-lysine, DD was back in school 6hrs/day and two weeks later, went back full time. So it did the trick.

Wondering if anyone else has seen viral issues when fighting yeast. After you guys suggested yeast for DS as a source of his recent flare, I upped probiotics and garlic (the only tools I have until we see LLMD on Monday) and he's developed a cold. I had stopped abx last Sunday (zith+rifampin) but then on Thursday he got very angry and flipped out over the littlest things and got congested. (the past 6 weeks has only been OCD - a 3-4 on a 10 pt scale- but no anger, no other symptoms). He's now full-fledged sick and very short tempered and OCD is worse. Like you said, could be coincidence. Just wondering if it means anything. Grasping, I know.

Yes, I used the Genetic Genie to generate a Yasko-like report. I then took my kids' results and used the Heartfixer document as a guide for what to do about each kid. The result was that I stopped some supps, added two and it confirmed that the rest were on target. Someone sent me a copy of their Yasko report and I agree - I'd be very upset if, after spending $$ for her testing, all I got was a grocery list of dozens of supplements to buy, with no explanation of what the report found. What I like about the heartfixer write-up (aside from it being free) is that it talks about what each gene does and the relationship between genes and then gives specific recommendations for supplements. Now granted, it's a sample report so you do need to keep your own results in mind, but it's a pretty good starting point. You could probably get the same info from Yasko's book but it'd be a lot more work on your part. I'm sorry if it comes off like I'm pushing the 23andMe. I respect the concerns about privacy and any other doubts you have. For me, having spent $75 on bottle of tinctures that did nothing (twice), $25 on bottles of supplements that were supposed to be good but didn't work for my family, the $99 for the 23andMe seems like a good buy. It will pay for itself easily. But I need to reign in my enthusiasm and realize it's not resonating with everyone.

I'm not sure I agree that CFS can't be treated. Not sure if you've read the writings of Rich Van Konynenburg http://forums.phoenixrising.me/index.php?threads/documents-by-rich-van-konynenburg-parts-1-7.11488/ but this may be helpful.

Yes, the sulfa, sulfur, sulfite, sulfate thing is very confusing. But this is where I got my info on avoiding sulfur from the heartfixer document that has become my roadmap for the whole methylation thing: http://www.heartfixer.com/AMRI-Nutrigenomics.htm CBS (+) individuals will be intolerant to sulfur containing drugs, nutritionals, and foodstuffs. It then goes on to discuss sulfites and sulfates and ammonia. Later, there's an appendix of high sulfur supps and foods you should avoid if you're CBS+. Tumeric is a high sulfur food. So is milk thistle, which I'd been giving to DD but stopped once I got her 23andMe results. I know you're in great hands with Dr O and if what she's advising is working, then of course stick with it. I was directing my comment more toward the statement landamom started with, which was about being tired of spending $$ on things that don't work. With the info I now have, I have a better idea of why some things worked and why some didn't. Your comment about the sulfa effect on your liver is interesting. My own liver enzymes were elevated at my annual physical and I need to re-check in a few weeks. The only supplement I'd added in the past year was NAC in January for a chronic cough. I stopped the NAC while I wait for the re-check. Curious to see if that's what was behind the spike.

Sorry to bring everything back to methylation - trying not to sound like a broken record. But if you have a CBS mutation and can't tolerate sulfurs well, enhansa/curcumin wouldn't be well tolerated since it's high sulfur. Not at all trying to dissuade anyone from trying it. I only mention it because sometimes I'd try a supplement (like NAC which is also high sulfur) and DD would flip out and I'd scratch my head. She was struggling when we tried enhansa and it didn't help and now I know why. So if you've done 23andMe and have CBS issues, avoid it. If you don't have CBS issues, it should be helpful. For this reason alone - the ability to "pre-screen" a supplement based on it's methylation properties - the 23andMe test pays for itself if it saves you from buying just a few "wrong" supps.

We used it briefly a few years ago when DS was first dx'd with lyme by Dr M. But it was hard getting doses in DS after awhile. It hid well in a milk shake but after a few weeks, he got tired of being forced to drink one every day. At the time, we were also adding other supplements and cash was flying out the window, so it became a "nice to have" rather than a "must have" and when the balking at taking it started, it wasn't worth the battle. No idea of it helped.

From this link: (scroll down past the diagram) http://www.heartfixer.com/AMRI-Nutrigenomics.htm#Methyl%20Cycle%20Genomic%20Analysis%20and%20Supplementation (excerpts are below - click link for full article) CBS initiates the trans-sulfuration pathway, converting homocysteine in to cystathionine and its downstream metabolites. This is the most important Methyl Cycle defect. The CBS defect is an up regulation. Homocysteine and all of the upstream methyl cycle precursors will be “pulled down the CBS drain” to produce toxic levels of cystathionine metabolites. We treat CBS ( +) individuals with dietary animal protein and sulfate restriction and supplements designed to neutralize ammonia and speed up clearance of sulfite/sulfate. Biochemistry – The 10-fold up regulation in CBS generates sulfur breakdown products (sulfite and sulfate, which stimulate the stress/cortisol “fight or flight” response), excess ammonia (in the process wasting BH4 which is used up detoxifying ammonia), hydrogen sulfide (producing “brain fog”), and alpha-keto glutarate (leading to “excitotoxicity”). The G6PDH enzyme system may be affected, leading to abnormalities in sugar control. Methylation intermediates will “fall through this drain”, so the entire system suffers; our defenses against viral invasion and toxicity suffer. Co-Q10 and Carnitine generation will fall off due to impaired methylation, and ATP levels fall, robbing you of energy. Ammonia is produced during the metabolism of dietary protein. The CBS up regulation drains methyl cycle intermediates in to ammonia, more ammonia than your system can handle. Ammonia detoxification is metabolically expense, using up two molecules of BH4 per molecule of ammonia. BH4 is necessary to generate neurotransmitters (dopamine, serotonin, and norepinephrine) and nitric oxide, our key vasoprotective molecule. Thus it is easy to see how a CBS up regulation, by generating ammonia and depleting BH4, can set you up for neurological, psychological, and cardiovascular disease states. We cannot change your DNA. We cannot stop CBS from generating excess ammonia, but if we restrict animal protein in your diet, we can decrease your ammonia burden, preserving BH4, such that you can start making neurotransmitters and nitric oxide again – in other words, we can compensate for your genetic challenge. The herb Yucca, Dr. Yasko’s Ammonia support RNA product, and supplementation with charcoal and carnitine will bind up or neutralize ammonia, and add to your dietary efforts. Sulfite is neurotoxic. Sulfite will be over produced by the CBS up regulation, and then requires conversion in to the less toxic sulfate molecule by the enzyme Sulfite Oxidase (SUOX). SUOX can easily be overwhelmed. Molybdenum is required for SUOX function, and is typically depleted in CBS (+/+) or (+/-) individuals. While sulfate is less toxic than is sulfite, it will stimulate the adrenergic (fight or flight) limb of the autonomic nervous system and stimulate a cortisol stress response, revving you up into an unrelenting biochemical overdrive. If you have a CBS defect, we need to restrict your sulfur intake, at least until your urine sulfate (and your body sulfate burden) has decreased. The amino acids methionine, taurine, and cysteine all contain sulfur; they are concentrated in animal protein (thus the restriction on animal protein intake). Many nutritional supplements (MSM, N-acetyl cysteine, glutathione) that are good for most people are a problem for you. While certain aspects of your health will benefit from these agents, they will add to your sulfate/sulfite overload problem, adversely affecting the Methyl Cycle Defect that is the common denominator to all of your health problems. Many drugs are loaded with sulfur (sulfates, sulfites, metabolically active sulfur), so if you are CBS positive and I treat your hypertension with the diuretic hydrochlorothiazide, your diabetes with the sulfonylurea drug glipizide, and your urinary tract infection with a sulfa containing antibiotic, I will be lowering your blood pressure, lowering your blood sugar, and clearing bacteria from your bladder, but I will also be adding to your sulfate burden, compromising your biochemistry, and contributing to an ongoing decline in your health. I will be treating the manifestations of an underlying problem and at the same time adding to the underlying problem. If I treat your Mercury overload with DMSA or DMPS, I will remove a toxin from your body, but if you are CBS (+), I will be adding to your sulfate/sulfite pool, and sulfate/sulfite overload due to the CBS up regulation is likely playing a key role in your sensitivity to heavy metals and/or your inability to clear them. We can avoid this. We can hold sulfur containing agents until your sulfate burden has come under control. Learn all you can about the sulfur content of foodstuffs, supplements, and prescription drugs. Sulfites and Chronic Disease by Rick Williams (available at the office or at www.readingtarget.com/nosulfites) is an invaluable resource. Do not expect us to know the sulfur content of foodstuffs. Some tips on low sulfur eating are included at the end of this document, but do not expect us to tell you what to eat. We can’t do this. We do not have this knowledge. Please attend our monthly Methyl Cycle support groups meetings, and you may sign up for individual (or group) dietary change counseling. It is your responsibility to become expert in this area. I will work with you to phase out high-sulfur drugs and nutritionals from your program, but don’t expect me to get in right every time – please study your food, drug, and supplement labels. Excitotoxicity – The CBS up regulation leads to excess production of alpha-ketoglutarate, which is converted in to glutamate, a stimulatory neurotransmitter. Under normal circumstances, glutamate will be converted in to GABA, a calming neurotransmitter, but the enzyme systems that convert glutamate in to GABA are compromised by lead and mercury, the clearance of which seems to be compromised in individuals with methyl cycle defects (here is a situation where dysfunction of a genetically abnormal enzyme leads to acquired dysfunction of a genetically normal enzyme system). The result is “excitotoxicity”, stimulatory behavior in autistic kids (“stims”) and anxiety and sleeplessness in adults. We approach this problem by limiting alpha-ketoglutarate and glutamate rich foods from your diet (more on Excitotoxicity to follow; diet tips in appendix) and by supplementing you with GABA, aiming to restore GABA:Glutamate balance. GABA is initiated at 500 mg once or twice a day, advancing the dose as you see fit by your response. Abnormalities in BHMT (Betaine-Homocysteine Methyltransferase) aggravate and frequently co-exist with CBS defects. BHMT mediates the “backdoor” pathway of homocysteine metabolism, drawing homocysteine away from the trans-sulfuration pathway that is up regulated in CBS (+) individuals. A defect in BHMT, will thus mimic or add to a CBS defect. BHMT can be stimulated with Phosphatidylserine, Phosphatidylcholine (which is combined with the metal chelator EDTA in Lipophos EDTA), and the methyl donor TMG (Trimethylglycine), and one or more of these agents will be included in our treatment program for CBS (+) and/or BHMT (+) individuals. In a sense, the key ultimate consequence of CBS/BHMT abnormalities will be BH4 deficiency. By neutralizing the consequence of your CBS up regulation and/or BHMT down regulations, your BH4 status should begin to return towards normal. We also can supplement you with BH4. It is strongly recommended that BH4 supplementation be held until all other Methyl Cycle pathways have been optimized. Pharmacological doses (200 mg/day) of BH4 has been shown to be safe and effective when used to treat endothelial dysfunction in hyperlipidemic individuals, and in dealing with Methyl Cycle defects, far lower nutritional doses (2.5 mg four times a day) are typically employed, but here a little bit of BH4 can go a long way, and we need to be prepared. If long-closed detox pathways are suddenly opened up, you could experience a detox reaction, so we need to get the rest of your systems up and running before we open these closed gates. If neurotransmitter generation suddenly comes back on line, and you are taking an anti-depressant drug or nutritional that preserves neurotransmitter levels, you could experience a neurotransmitter surge if we have not cut back on the drug dose. If we give you BH4 before you are ready, you will feel great for a day or two, and then “crash”, with fatigue and malaise, as we attempt to spin other metabolic wheels forward that are still stuck in the “off position”. Thus we need to be patient, take things step by step, with the long goal in mind. Energy Production will falter. To generate ATP energy, you need Co-enzyme Q10 and Carnitine, but to manufacture these co-factors you need methyl groups, which tend to be in short supply in individuals with Methyl Cycle defects. To make matters worse, when energy is in short supply, homocysteine is shunted in to ammonia, hydrogen sulfide, and alpha-ketoglutarate, and not in to its one beneficial metabolic product, glutathione. NADH, Carnitine, Co-enzyme Q10, and its non-oxidizeable 1st cousin Idebenone will all help with ATP energy production, and their use makes sense in patients with CBS up regulations, especially if they have cardiovascular disease. (I am getting ahead of myself, so skip this entry if you wish, but the latter three agents also can serve as methyl donors. We will be more liberal with their use in individuals who are COMT (-/-), who need methyl donors, and more conservative in their dose in individuals who are COMT (+/+), who will be more sensitive to methyl group supplementation). Ribose increases ATP regeneration in individuals with cardiovascular disease or other conditions associated with energy deficiency, and can be taken as well.

QueenMother - will you marry me? :wub: (for background, I have been on a methylation/23andMe soap box for about a year and my friends are laughing as they read your post - I have a sou lmate in you!) FWIW - I didn't have my kids results when JAG started this thread. I've since found that both of my kids are COMT +/-. In addition, they also have MTRR, BHMT, VDR, MTHFR, NOS and CBS issues (each kid has a different set of issues). One child had/has lyme and Pandas. One is unclear. Seeing great progress by using methylation as a guide to treatments.

So I sent an email and it was forwarded to the Editorial Director who manages the web site. I received this response: "Thanks for the information and the links, which are excellent. I will take down the "myth," which reflected the thinking of our OCD specialists when we wrote the guide. And I think it's a good idea to do a story updating our understanding of this, based on the work Sue Swedos and others have done to redefine the syndrome and update the critieria. Please thank your friend for alerting us to the problem. It's very helpful. Above all we don't want to pass on misinformation." Caroline Miller Editorial Director Child Mind Institute If you have time, please write a brief note thanking them for their prompt action and willingness to learn more! (and please take their quiz - they earned that dollar IMO).

We too are big on quercetin to manage symptoms, along with zyrtec. We are also doing sublingual allergy drops (allergy shots were too traumatic). One thing that has really helped is buying mattress encasements for the mattress and box spring and pillow encasements. These have made a huge difference in DDs symptoms over the winter. I'm hopeful it will also reduce her allergen load this spring (tho obviously it's only one component). Keep the windows to bedrooms closed and if you open windows in the rest of the house, keep the bedroom door closed. The goal is to create a safety room in the bedroom. You can also use motrin more regularly to keep inflammation reduced. When we did them, a year of allergy shots helped enormously. The following spring, DD hardly had any issues or symptoms. Unfortunately, DD developed huge needle phobia. So we're starting over with drops. You need to do shots or drops for many years but it's so worth it in our house.

You may want to try quercetin - it inhibits mast cells and is a great antihistamine. I like it much better than any OTC allergy med. My only complaint is that at the peak of allergies, it wears off after 4 hrs. But you might see improvement if you give one capsule every 4 hours and stay on top of it for the next 10 days until your appt.