LNN

I thought B-12 is for over-methylators. The under-methylators (the ones with OCD, allergies) need B-6 and need to stay away from B-12. Am I mis-understanding or do you suspect your kids are over-methylators?

I have been looking at Yasko's work (that's where the diagram came from). But what sort of success rate? I hear claims that she's quite successful, but JJL - what's your personal experience?

Ok...Nancy, this is for you - you will LOVE the Table of Contents of this book, particularly page 85 http://www.amazon.com/Autism-Pathways-Dr-Amy-Yasko/dp/1424343216/ref=sr_1_1?s=books&ie=UTF8&qid=1319240918&sr=1-1 Guess what's going on my Christmas list? DUT - I was thinking somewhat along the lines Nancy was, except in my case, I know there were "things" in babyhood and toddlerhood that weren't Pandas but weren't normal either. Severe colic, eye blinking for 2 days, weird episodic manic behaviors that would disappear as suddenly as they came. So my thinking (for this moment) is that things with DS's methylation cycle have always been "tenuous" or prone to imbalance. So each time his body faced an assault, things got a little more unsteady (e.g. an infection, a vaccine, long term effects of a vitamin deficiency, a long period of poor nutrition (as in low sunlight in New England for 6 mos of the year). The list could be endless. Then along comes a major blow (in our case, a tick bite) and then a few months later, strep. So the teetering system crashes out of balance and the neat spool of string becomes a tangled mess that can take quite awhile to untangle. And if you try to untangle in the wrong way, maybe you create more of a mess. So like Nancy said, what seems like "overnight" could be something brewing for awhile. Then one final straw makes small, under the radar things manifest as an in-your-face visit by Linda Blair. Why I think methylation is so key for my kids is that IF I can help make their methylation cycles more effective, then their innate ability to fight infection will be better. Then, our efforts to fight infection from the outside (abx et al) can be more effective. Maybe the brick wall we run into every few months is because we haven't unclogged the underlying system. Not sure how I feel about auto-immunity. My situation goes beyond strep and auto-immunity. So my colored lenses may be missing things. But I still come back to the start of the whole thing and SAMe and homocysteine and histamine. I really really appreciate you guys having this conversation with me! Can't tell you how much the links and ideas have helped. This is huge for me. Thanks!

We tried it last month. Was not a good fit for our situation. But it's possible that's because DD has lyme (or related issue) and she may have biofilms (think of tooth plaque, which is a biofilm). NAC has several roles in the body. One of the things it does is act as a biofilm/mucus thinner. So it's good for congestion. But bad if you're breaking up a biofilm without a plan to deal with the fallout. It may play a role for us down the road. It just wasn't the right time given our circumstances. If you do start, you should taper up. We started at 600mg (DD is 43 lbs) and did that once a day for 2 weeks. Then we increased to 1200 mg but only did that for about 5 days when I decided to taper back down. It could've been that we increased in too large of a step. Three years ago, we used inositol for my son for about 6 months and it was helpful. It has little taste (sort of like powdered sugar). We tapered up slowly, over 6 weeks. When we stopped, we also had to taper down. (we stopped b/c that bad period had ended).

Nancy - for your SAMe reading pleasure...too long to cut and paste here. Newsweek Review It's from 1999- somewhat dated, but a good overview. Just be mindful of any other stuff you're using that works on similar points in the system. Let me know how it works... A few months back, I asked our LLMD about SAMe for DD and he said he once recommended it a great deal and now not as much, but he didn't elaborate. I'll be asking why when we see him next week.

We didn't see any negatives from dropping the pepcid. We did it slowly - half a pill for two weeks, then half a pill every other day.. I hope the new doc pands out - an appt in only two weeks? What a concept!

It seems doctors, and theories, come in and out of favor on forums. Depending on when you join this forum, some doctors will be highly regarded and others will have lost their luster. I think you need to consider your financial situation, your ability to travel and what sort of treatment options you feel most comfortable with. If you would like opinions on the various doctors, you can ask people to send you private messages with their input. Some of us have experience with several, as they each play a role in a part of your journey. But there isn't necessarily one doctor who will meet your needs for the entire process. It's more like dating than marrying. I realize you've been hit by a ton of bricks and PANDAS is a lot to wrap your head around. So I don't want to throw more at you. I only want to caution you that for those of us here, most have not found "one" answer for our kids. Many of us have tried a full range of treatments with varying success. The best advice I can give you is to look at this as a process of getting your child healthier, not a one-time, do one treatment and you're done kind of thing. It's a paradigm shift. You will have to become a case manager, documenting all sorts of symptoms, following up with doctors, advocating, driving the bus. You will have the job of sifting through lots of well-meaning but sometimes contradictory advice and experiences. Trust your gut. That said, if you get to a point of wanting to do more research, I would second DUT's suggestion of looking at methylation. It's a basic chemical function of the body that sets off hundreds of processes for proper health. It relies on vitamins and minerals and enzymes and all sorts of stuff I don't pretend to understand to keep things humming. Much of what the treatments for chronic illness focus on is down stream- using antibiotics and other treatments to manage symptoms. And that's perfectly appropriate for a family in crisis (don't get me wrong - we've done it all). But looking at methylation might be a way for you to look at long term support of your child's health, to help his body get stronger for future infection challenges. It's very complicated stuff but I'd write the word down and come back to it when you feel you're on track with a plan to treat your current situation. From your son's past struggles with infection, it may be an important piece to look at. I hope your son continues to stabilize and you find lots of support on this forum. It does get better.

Yeah!! Noticed you had gone silent and figured you were stressing from the testing. So glad you can cross this one off your worry list and "Only" worry about all the other stuff! How are you and DD feeling these days?

CAB - I can't begin to understand all of this and could never suggest what the difference is between DINEs, ATEs etc. Totally beyond me at this point. But some doc has ordered these tests for you and it would seem he/she is at least aware of the possible impact of methylation on your son's health. I would see if you can get in front of the doc and discuss. It seems like your gut is telling you these things are important and I always find in hindsight that gut reactions are a pretty decent guide. I also stumbled upon this blog about methylation and it's impact on anorexia, OCD etc...she ties it together in a way that helped me see the implications... http://pmddisreal.blogspot.com/2008/09/sam-e-to-methylation-to-copper-overload.html

Here's a blog about someone who had another disorder (premenstrual dysmorohic disorder - PMDD) who had one of those "AHA" moments when learning about methylation. Associated with under-methylation, which results in low levels of important neurotransmitters such as serotonin, dopamine and norepinephrine. Treatment focuses on the use of antifolates such as calcium, methionine, SAMe, magnesium, zinc, TMG, omega-3 essential oils, B6, inositol, and A, C and E... Choline is anti-dopaminergic and often makes undermethylated patients worse. Also bad are DMAE, copper and folic acid. Three to six months of nutrient therapy are necessary to correct this chemical imbalance. One thing that is absolutely certain is that methionine and/or SAMe usually harm low-histamine (overmethylated persons)..... but are wonderful for high-histamine (undermethylated) persons. The reverse is true for histadelic (undermethylated) persons, who thrive on methionine, SAMe, Ca and Mg..... but get much worse if they take folates & B-12 which can increase methyl trapping. Nearly all severely undermethylated persons have low serotonin levels and present with a history of depression, internal anxiety, and OCD. Many have a history of perfectionism and high accomplishment in the early years. We have found that nearly all anorexic and/or bulemic patients are very undermethylated, low serotonin persons. Most of then respond very well, albeit slowly, to aggressive doses of methionine, Vitamin B-6, and calcium. A positive response can usually be achieved more rapidly with SAMe... ...In my experience, most anorexics are perfectionistic, obsessive-compulsive, high-histamine, low serotonin persons. Most have a history of high accomplishment in school and were never discipline problems. These are excerpts - full blog is here: http://pmddisreal.blogspot.com/2008/09/sam-e-to-methylation-to-copper-overload.html She cites this article by Dr Walsh, an early advocate/investigator with the Pfeiffer Institute, the same article Suzan posted on the Pandas forum (I think - getting my threads confused) http://www.alternativementalhealth.com/articles/walsh.htm A few months ago, I had stumbled onto Safe Harbor and this article and it only had mild interest to me. Now it means so much more. I always get excited when something comes across my path twice. Corny, but it feels like serendipity, or fate, or a igher power, hitting me over the head. Like - "Dear Laura, tried to give you this info but you ignored it. So here it is again, with a slap upside your head to make you listen this time". Ironically, I had come across the man who is now our LLMD three years ago, when I first started looking for a Pandas doctor. So last year, when someone put his name in front of me again (thanks JS) it gave me that "fate" feeling. I feel the same way about methylation (thanks S&S for mentioning it months ago - now I'm listening). Suzan - note the DMAE above - does that strike a chord? Also had a very strange experience yesterday. DD has been ok - her C3d has come down from 90s in January to 20s in August, so the combo abx seem to be helping. We weaned her off pepcid (which coincidentally lowers histamine) and she's gaining weight, fewer eating issues (still occasional GERD). But she continues to have low level anxiety and cruel intrusive thoughts that strike at dinner time and bedtime. For whatever reason, I was crawling out of my skin for the past two days with itchiness, hives...so I dug out the quercetin. On a lark, I gave her 800 mg quercetin+bromelein after school, since she said her throat hurt a little (assumed it was mold/allergy thing from rain & falling leaves). Last night - NO OCD. Weird. Hard to think such a small, one time dose of quercetin would be behind it. But it was a strange coincidence. Will try another experiment tonight. I know it can't be that easy, but...?

I do track symptoms - have 2 yrs of charts...I track my daughter daily and my son weekly (son's just got too long to fit on one page, so I consolidated the info). I have 5-7 symptoms that I rate on a 1-10 scale and make a stacked graph. Good weeks have short stacks and bad ones have high stacks. Below the data entry section, I make notes to myself about what things were relevant (medications, illness, etc). But despite my charting, cause/effect aren't always clear.

Now it's only a matter of finding a blockage....

DUT - posted this on the lyme forum but thought you'd be interested in this article http://planetthrive.com/2009/06/glutathione-depletion%E2%80%94methylation-cycle-block-hypothesis-the-customized-approach/ As discussed in Van Konynenburg’s paper, people who have been ill for an extended period of time (many months to many years) will have accumulated significant infections and significant body burdens of toxins, because both their cell-mediated immune response and their detox system will have been dysfunctional during this time. When the methylation cycle is then restarted, both the immune system and the detox system will begin to function better. When they do, pathogens and infected cells will begin to die off at higher rates, and toxins will be mobilized. The resulting detoxification will be unpleasant, and may even be intolerable. If the patient has not been prepared in certain ways, discussed below, she or he may not be willing to continue this and may drop out of the treatment program. This guy seems to think this is the key to several chronic illnesses...

IDK Christianmom - sorta does sound like rocket science to me... http://planetthrive.com/2009/06/glutathione-depletion%E2%80%94methylation-cycle-block-hypothesis-the-customized-approach/ Different patients have different genetic polymorphisms in the enzymes and other proteins that impact the methylation cycle and the associated biochemical cycles and pathways. Some of these polymorphisms will have important impacts on the choice of specific parts of the treatment program. In using this more complicated treatment approach, it will be necessary to characterize the polymorphisms before it will be possible to make some of the decisions about selection of particular treatment aspects. The results from this genetic panel require interpretation. One can either study Dr. Yasko’s materials to gain her insights on interpreting the results in general, or order her interpretation of the particular results, which is called a Genetic Analysis Report or GAR. The GAR is a computer-generated report with some general material that applies to all the cases, and specific sections that are chosen in response to the particular genetic polymorphisms found in the individual patient. As such, the continuity of the discussion in the GAR is not what would be found in a report written from scratch for each particular patient, and it may have to be read more than once to make all the connections in one’s mind, but the material contained is specific to the particular genetic panel results, and Dr. Yasko updates the material used in generating the GARs as more is learned. As discussed in Van Konynenburg’s paper, people who have been ill for an extended period of time (many months to many years) will have accumulated significant infections and significant body burdens of toxins, because both their cell-mediated immune response and their detox system will have been dysfunctional during this time. When the methylation cycle is then restarted, both the immune system and the detox system will begin to function better. When they do, pathogens and infected cells will begin to die off at higher rates, and toxins will be mobilized. The resulting detoxification will be unpleasant, and may even be intolerable. If the patient has not been prepared in certain ways, discussed below, she or he may not be willing to continue this and may drop out of the treatment program. See the article for a full discussion.

Yes, please let me know. Pfeiffer says they can test, but ka-ching! Like my LLMD, but in 45 minutes, hard to focus on chelation, detox, abx, KPU...and methylation wasn't even on my radar last week when we saw him. He obviously understands methylation but doesn't seem focused on it. The "benefit" of having a second sick kid is that we see him again next week for her and I'll be asking for testing. Just not sure what's available and what sort of detail/direction it will give us. So please let me know what comes of tomorrow!

I'll speculate that you could test levels of methylation components, but as you probably know, blood levels are not necessarily reflective of interacellular levels (e.g. zinc blood level may be fine even if a KPU induced zinc deficiency intracelullarly). So I think it's one of those dart board parlor games where we get to add or remove stuff and observe. To make the game more fum, how's this twist - so I add stuff and he seems fine, maybe even better. But then after a few weeks, get gets worse. Is it because now there's too much in the system? Or is it because we've enhanced the methylation process and the body is now working on things like chronic infection/detox and it's that "herx" kind of reaction? How the heck are you supposed to know? Ds is home sick today. We haven't changed any dosages of anything in about 2-3 weeks. Yet he's complaining of brain fog, muscle pain (haven't had this one in about 4-5 months), sore throat (no swollen glands or fever). Is this a good thing or a bad thing? I am soooo tired of this crap.

You can PM TPotter - her son had one over the summer I think. My only experience is for Pex, which was 3 days in the ICU. So probably can't add much, since you've already had a similar in-patient experience.

I haven't grasped the whole concept well enough to understand it, but I know just from experience that you can have varying degrees of histamine levels throughout the day (think of how your allergies can be more or less troublesome) depending on when and where you're exposed to environmental triggers. Would probably also vary depending on what your levels were of the various elements (SAMe, vitamins, etc). So I would guess that you could have changing levels of histamine. But how this relates to your general tendency to methylate, I don't yet understand. One of the groups I've come across - maybe the Pfeiffer Treatment Center - categorizes people into 26 different sub-types, with 26 different "recipes" of supplement combos. Also, I'm speculating that chronic illness changes your methylation abilities and creates a clog in the system somewhere. Eradicate or lessen the influence of the illness and the system dynamics change, improving the methylation cycle and your body's ability to detox. So in some ways, your current methylation "health" would change in response to your overall health. I think the genetic tests reflect your body's general tendency - shows where you're likely to have a problem. But doesn't mean (I think) that you're doomed to have the problem to a consistent degree your whole life. Just like your HLA DR genetic profile - you may have a tendency to be unable to handle mold exposure well. But if you can remove the mold, your body can regain balance and health. I think in a similar manner, you can supplement at certain points in the methylation cycle and regain balance. Once you address chronic illness, the need for those supplements may change. That's my current thinking, anyway. Could totally change as I learn more.

DUT - Can you explain the type of testing you've done and where it was done (specialty lab, regular lab, etc). Have an appt next Tue with our doc and I want to explore this for my kids. I am such a geek - had to drive to Boston today and in the 4 hours in the car, it's all I could think about. Nancy, I was thinking how this could end up being a key for some (maybe not all) who struggle with seratonin issues - seems way better than an SSRI bandaid. I know I've over-simplified everything in my head and I'm sure it's way more complex than I appreciate. But it just seems like it's closer to the "why" of the problems our kids "suddenly" encounter, and why some struggle even after an infection is gone we've done so much to get them better. I'm waiting to get "approved" to join Amy Yasko's fourm - hoping to get some additional info on all this. Still have to figure out how to fix things, then deal with the chronic stuff, but it "feels right" that this is a path to go down for us.

Thanks for the google phrase - I liked this one. http://aboutmecfs.org.violet.arvixe.com/Trt/TrtMethylTheory.aspx Once again, mercury seems to rear its ugly head. Off to find Yasko's Step 2 info... Laura

I'm not really the best forum member to respond, but I can say from all my research that the symptoms you describe during your daughter's first episode are not typical of any other non-infection triggered disorder I'm aware of. Kids who have "regular" OCD don't go symptom free. For them, it's not an on/off light switch. The fact that you caught this last infection early may have prevented an immune response chain reaction. That doesn't mean she doesn't have PANS. It just means she's lucky you're her mom!

So I've gotten myself into a conversation over on the Pandas board about methylation http://www.latitudes.org/forums/index.php?showtopic=15205 that I think applies to at least Suzan and ChristianMom and others who are dealing with KPU and/or problems with detox or severe herxing. I don't want to bombard the Pandas people with lyme references, but if any of you want to peak over there or help me understand methylation, I'd welcome more brain cells to the project. I so wish I had a brain for chemistry...but I was toward the back of the line when that talent was handed out. Anyway, it's feeling like methylation is so important to things like herxing and detox and mold and the links DUT has posted over there have been really helpful. In light of the recent lyme sensitivities over there, I want to be respectful of the Pandas viewpoint and don't want to hijack their thread. But thought maybe some of you could read the thread and then maybe come back here so we could talk about how it might apply in lymeland.

We're another family that has an endoscope that showed nothing except slight inflammation from GERD. Normal eosinophils, neg for h. pylori. Told to give pepcid for the GERD and dyspepsia and come back in 6 mos. I don't know if yeast would be the only culprit (tho we certainly try to guard against it with probiotics). To throw this out for your things to sleep on... My daughter is the one with the GI issues (I generally post about my son). She would fit the Cunningham profile for Pandas (CamK 179, anti-lysogangliosides >1200) but negative strep titers, no known strep infections. She is indeterminate for lyme, clinically looks like bartonella but no labs to confirm. So we don't know what to call it, but we know she responds very quickly to abx - like from a 9 on the exorcist scale to a 3 within 24 hrs. Because we see an LLMD, he was willing to use a combo abx treatment for her. We initially started with just zith but she hovered between 4-5 on the symptom charts and was losing weight because GI issues and fear of GERD kept her from eating. So we added bactrim - one of the abx used for bartonella. This took her down to a 2-3 on the scale. We've been able to ween her off of pepcid. She is still struggling with mild OCD/intrusive thoughts and some lability and sound sensitivity. Most days are a 2-3 but we can't seem to get rid of it. My current theory is that she has a gut biofilm where bacteria are hiding out. In a biofilm life cycle, bacteria in the biofilm (which is probably comprised of a variety of viruses and bacteria - not just one kind), there comes a point where some bacteria emerge from the film to break out and reproduce, keeping a new generation of bacteria out there in the body and then to form new biofilm colonies. It's speculated in the autism community that biofilms are a big problem, particularly in the gut, contributing to dysbiosis and leaky gut. I think what we've been doing so far, with the abx, is keeping things at bay - the abx might be killing stuff when it emerges from the biofilm but isn't getting at whatever films are already there. This is an alternative explanation to why some Pandas kids can't seem to get off abx - maybe they have bacteria (strep or whatever) that's in biofilms. Here's a general explanation with a good diagram about h pylori biofilms (don't know this doctor, not suggesting his protocol - I just liked the diagram and general discussion and the NIH statistics) http://www.advancedhealing.com/blog/2009/09/25/dr-ettingers-biofilm-protocol-for-lyme-and-gut-pathogens/ But until we do something to strip away the film and kill the exposed bacteria, we're not going to get to the root of the problem. The problem is that biofilms are often comprised of calcium, magnesium, lead, mercury and other toxic stuff. So when you attack a film, you need a plan to 1. kill the bacteria 2. handle the nasty metals that may be released and 3. handle the toxins that will be released by the die off of bacteria. This is my topic of conversation at our appt next week. So I toss this out there just for you to consider or discuss with your doctor. It's a different way of looking at the problem.

I found this link and it generally ties back to MaggiesMoon's question on methylation and OCD: http://www.alternativementalhealth.com/articles/walshMP.htm One-carbon (methyl) groups are involved in numerous important biochemical reactions in the body, including genetic expression, neurotransmitter synthesis and metabolism, etc. Methylation (more properly, the methyl/folate ratio) is a major factor in the rate-limiting step (the tetrahydrobiopterin reaction) in the synthesis of serotonin, dopamine, and norepinephrine in the brain. Undermethylated persons tend to be depleted in these 3 neurotransmitters, and the opposite is true for overmethylation. The SAM cycle in which dietary methionine is converted to SAMe (the primary CH3 donor in the body), and then to homocysteine, is a dominant cascade of reactions in methylation and also is very important in production of glutathione, cysteine, and other aspects of sulfur chemistry. Most persons with depression, oppositional defiant disorder, OCD, bipolar disorder, or schizophrenia exhibit a genetic abnormality in methylation..... which appears to be central to their illness. Carl Pfeiffer, MD, PhD of Princeton, NJ was a pioneer in this field. (Oct 3, 2003) The article is long and bounces around a bit but worth a read...(scroll down to the heading for mehtylation) The thing that I'm trying to wrap my head around is that this so closely ties into where I am in my current research. My kids were recently diagnosed with pyroluria, which is a defect in the way their bodies synthesis heme (blood) production. A byproduct of their syntheses creates pyroles that bind to zinc and are then excreted in the urine (along with the zinc, creating a zinc deficiency). Zinc is the ammunition of the immune system. No zinc, no bullets. So it predisposes them to infection and reduces their ability to fight those infections. Pyroluria (aka KPU) is an iummne suppressive condition - most likely genetic/lifelong for my kids but possibly lyme induced (speculated by Dr Klinghardt - a lyme doctor). We saw amazing cognitive improvements in my son when we started supplementing with zinc/B6 but then hit a wall after 2 months when we tried to increase dosage (which is the time Klinghardt predicts the body is finally able to deal with any possible mercury/metals issues). My son tested with slightly elevated mercury levels in a urine test. What I was fascinated by was the earlier diagram that shows how part of the late stage methylation process plays a role in mercury detox. And how B6 (and maybe zinc?) is needed for the methylation process. And how issues in an underperforming methlylation process can cause a clog in the whole immune/detox system. When my son (the sicker of my two kids) was really sick with strep-induced Pandas (and maybe lyme a few months before that), he was a huge ticcer with moderate OCD (maybe in the 20s on a YBOCS but able to go to school and function). Three years into this, with pex helping with the tics and combo abx helping with infection, he's tic and OCD free. The one episode we had of tics/mild OCD this spring was triggered by a too-aggressive abx attack on lyme cysts, which may contain mercury and certainly release a lot of toxins as they die off. So it seems we overwhelmed his methylation system, which was also zinc/B6 deprived. The tics came back. When we stopped that particular abx, the chain reaction settled down after about 3 weeks. So it feels like this thread has just handed me a bunch of puzzle pieces. Lots of things that have been on my radar are turning out to be linked. But now I'm not sure what do do with it all. The cognitive improvements from the zinc/B6 supplement have given us that AHA moment we've looked for for so long. It brought his mental acuity and personality back. But as we proceed, other things seem to be raising their ugly heads - (which might be because we moved the clog in the methylation process to a different point in the pipeline?) Feels like if we can clear the clog, his body may be able to finally deal with the chronic lyme infection in a much stronger manner (the lyme et al is likely hiding out in biofilms after all this time, but that's for another post on the lyme forum). How do you find out where the clog is and how do you clear it?

You are a rockin' google whore! :wub: