LNN

This thread may be helpful http://www.latitudes.org/forums/index.php?showtopic=15715 The articles contain dosing info. You definitely want to build up, staying at a particular dose for a few days before moving up again. Also, if you decide to stop, you need to titer back down, again stay at one dose for a few days before dropping. Don't start or stop in big steps. When dosing, always check the label of your brand. One brand may have 1 gram per teaspoon and another may have 2 grams per tsp. You need to dose according to grams and then figure out how many teaspoons that comes out to for your brand. FWIW - we use Source Naturals in the power form. You can then switch to capsules, but starting with the powder makes it easier to do incremental dosing as you build up. It has a slightly sweet taste, like powdered sugar. You can mix it in drinks or my 6 yo just puts it on her tongue and washes it down with a sip of water. I'm not sure two weeks is long enough to know if it's helping. It could be 3-6 weeks before you know for certain. I agree with Ozimum - if chronic infection doesn't seem to be your primary issue, consider a DAN! or integrative doctor or adding a naturopath to the team. Methylation has turned out to be a big piece for us and addressing that is really helping my kids. Methylation is like the body's assmebly line. If you have a defective worker at the station where the tires are put on, your final product can't function properly. Working with someone trained in methylation support can help you find out if your son has any defective assembly line stations and use supplements (e.g. magnesium, zinc, folate) to work around the defect and get the body to produce a functioning car. Chronic infection can cause problems in the assembly line, but so can other things. If immune deficiency/Pandas treatments aren't getting you to where you want to be, an integrative doctor may be a good place to go next.

Having toxic levels of heavy metals is fairly common in chronic lyme patients. This could be for several reasons - first, as an adult, he's had years to be exposed to toxins. Second, lyme is suspected of using/hoarding metals to build biofilms that make the bacteria nearly impervious to antibiotics. Third, lyme is suspected of blocking the body's ability to detoxify so that the body continues to re-supply the heavy metals and also create a more toxic/lyme friendly environment. Some LLMDs will help patients chelate (eliminate the metals) by using specific chelators - EDTA, DMSA or DMPS - each one has an affinity/preference for certain heavy metals (e.g. EDTA loves lead but doesn't bind much to mercury whereas DMSA loves mercury but doesn't bind to other things). Cheltation is a difficult process and needs to be done with a doctor who has experience with it. The second issue with lyme is that as you chelate, you strip away the metals that have been binding the biofilms. This is good in the long run, but in the short run, you release lyme bacteria from the film and have to deal with killing them and with the heavier toxin load that gets released by the dying bacteria. So major herxing symptoms. For this reason, many patients chelate for a few days and then take a break for a week or two in between. But the good news is that chelation could certainly make a big difference in his symptoms, as muscle weakness and neurological problems can certainly be part of metal poisoning. Your EOS results - EOS stands for eosinophils. These are a type of white blood cell and high levels can indicate an infection or an allergy. I don't know what the A/G ratio represents.

I too have a Pandas son who was triggered by more than just strep. In his case, it was lyme. But what I've found for him is that beyond the triggers, he had an underlying zinc deficiency that kept his immune system from working strongly. Now that we're supplementing zinc (and magnesium and a few other things), his overall health is better and his body and brain are starting to work the way they should. I know right now you must feel like you're in the middle of a mine field - you can't possibly protect your child from every germ out there. (I once would've given my last dime for a "boy in the bubble" suit for my son). If you're seeing triggers beyond strep, it's worth working with a doctor who will "look under the hood" and look at the immune system, nutrition, labs to check for vitamin/mineral deficiencies, etc. For my own family, we've only made sustainable (don't know about permanent yet) progress by supporting foundational issues like the zinc (plus on-going antibiotics for lyme). Your best bet is to find a collaborative, inquisitive doctor to help you look at the unique aspects of your situation. (my personal bias is towards DAN! and integrative doctors).

I think you're right - the nature of newspapers is that they can't get into the complexity of something. Even wars are explained in headlines, with no background into motives or complexities. Heck, I can't explain my kids' issues in a few sentences. I can't expect a reporter to be able to either. At best, they can whet your appetite and make you look for more info on your own. (maybe someone should post a link to latitudes on the WSJ comments section?) But what I think is beneficial is that when the WSJ treats this as a legitimate trigger and gives enough quotes from respected institutions, there will be some pediatricians and psychiatrists who will now be willing to give abx a trial, despite the AAP. When IOCDF, Harvard, Columbia and USF all say there's merit, some peds who might have been ambivalent may be willing to take a risk. For those of us who've been thru too many doctors offices, we get jaded. But this kind of press would've been huge for us a few years ago. And I have to believe it will help new families find an easier path. Sometimes change comes via dramatic revolutions and sometimes it comes in baby steps that chip away at "conventional wisdom." We're all making contributions to changing how people view mental health - when we talk to neighbors or doctors or teachers or when we take over restaurants and hotel lobbies for gatherings - sometimes I just think we don't realize it at the time.

The frustrating part of any news article is that it can only touch the tip of the ice berg. But what I like about this piece is that despite the AAP's appalling stance that kids who go suddenly crazy shouldn't be swabbed or given abx, the reporter counters that by quoting Murphy as saying nothing works faster or better than abx on Pandas kids. Without crossing that line of seeming biased, I think the reported did a good job of giving parents encouragement to push for treatment and not just suffer quietly. This reporter has covered other stories about mental health being caused by infection (see Confusing Medical Ailments with Mental Illness). If you like her coverage, please thank her and encourage her to follow up 6-12 months from now so it's not a one time story. You'll see an email link at the bottom of the article. I think it goes to a general mailbox but then gets forwarded to the individual reporters.

Yet Joe Burrascano in his Lyme Treatment Guidelines recommends magnesium as a supplement. I think you need to go with your gut on who to follow and base your decision on personal responses...there's just no clear answer on so much of this. But DUT isn't using oral magnesium - just epsom salt baths. Can anyone else share reactions to baths or talk about what other detox stuff you use in baths or for skin detox? Maybe she could do a trial of something else to see if she gets a similar "detox" response, to see if it's detox and not the epsom salts specifically...

Yeah!! Boy do you both deserve this!! Don't you just want to peek in on him while he's asleep and drink it all in, burning the memory into your brain?! DD is also doing well on inositol. She's having some issues I think are copper related, but the OCD fairies are gone and I'm pretty certain it's the inositol. She's on 2.5 grams (45 lbs). Very cool he's responded to such a low dose!

Epsom salts are often used as a detox therapy. Is it possible there's a detox element going on, rather than something specifically about the magnesium? Have you done much research on the trans-sulfuration pathway for detox? Anything along that line that might strike a chord? It might be worth posing a question on the lyme forum. Suzan posted last week about vinegar/cider? baths that brought on a strong reaction followed by improvements. Folks over there have a variety of detox experiences that might be helpful. Just brainstorming.

Magnesium has been a good thing for DS, but his MTHFR is normal. It has also helped DD - at least with BM regularity. But she has some sort of manic/bipolar thing going on that I need to figure out. I suspect it's a copper chelation happening from the zinc supplementation we're doing for KPU (blood test shows high copper). But I can't say for certain. I don't think it's the magnesium. Will have to give it time. I would think magnesium would be a good thing, but perhaps you're seeing a down-stream methylation block? Have you tried a methyl-folate or methyl-B12 or TMG/betaine supplementation? Why do you suspect magnesium?

We used Vitamin Diagnostics http://vitamindiagnostics.com/ Go to Lab tests/Specific tests/Kryptopyrrol in urine Klinghardt recommends a few changes in the step-by-step collection process - e.g. the lab says collect urine for 6 hrs, Klinghardt suggests a 24 hr catch, since levels vary throughout the day. If you decide to use this lab, you can PM me and I'll let you know the specific differences in directions. You must be off all supplements (e.g. vitamins and individual supplements like Vit D or zinc etc) for approx 5 days prior to the test.

Welcome. You don't give much information, so it's hard to tailor a reply to your specific concerns. But I don't know of any research or any anecdotal evidence that suggests "damage" is permanent. Some behaviors might become bad habits that will need behavior therapy, but if you're talking about brain damage, no, I don't think anything is permanent.

Timely post! In Sept, he wanted me to talk to his teacher to explain his situation - something I've done for the past 3 yrs. He wanted me to tell her about his 3 diseases (Pandas, lyme & pyroluria). I have probably been too honest/TMI in all of this with him, as the poor kid was starting to feel like a walking encyclopedia of illness. But in the past few months, he's gotten sooo much better (CORE + other vitamin/mineral supplements) that he's starting to divorce himself of this part of his identity. He recently started talking about Pandas in the past tense too. I know Pandas is considered autoimmune and last year I remember feeling dismissed by our LLMD on the Pandas stuff, like he didn't believe in it. He went on about the bucket and how if you fill it with too much disease/stress, it overflows and if you can empty some of the bucket, the body can restore its own balance - i.e. you could reverse "autoimmunity" - which at the time seemed ludicrous to me. I'm much more in line with his thinking now. I don't know if DS still has a tendency toward Pandas - hasn't had strep since his T&A two years ago. But I know he feels like a normal kid now. He watched his sister struggle with OCD and he finds the concept "odd" - he knows he had it but it feels like it happened to someone else. It's not who he is anymore. Let's hope he's right!

Which lab did the lyme test? Were all bands negative? There are separate tests for bartonella. Igenex has one that looks for antibodies to bartonella, babesia and one other infection - it looks for all 3 but it's pricey. Specialty Labs, which is a division of Quest, has a bartonella-only test that's generally covered by insurance. There's one other lab that also has a bartonella test but I can't recall the lab's name. Our LLMD used Specialty Labs.

Here are some helpful articles: http://www.nutritionj.com/content/7/1/2 http://findarticles.com/p/articles/mi_m0ISW/is_255/ai_n6211958/ http://www.neuroticplanet.com/forum/viewtopic.php?f=1&t=8706&start=0 * this article gives dosing info. But the author presumes a tsp. contains a certain amt of inositol. Not all brands are the same. For example, we use Source Naturals, where 1/4 tsp. = 845 mg. Check the label of your brand before using Penzel's dosing guidelines. You may need to do some math to make it match your brand. DS used it for 6 months in the early Pandas days and it made a noticeable difference. He was 55lbs at the time and we worked up from 400mg to 5.5 grams/day using the powder. DD started using it about 5 weeks ago and it has definitely helped her OCD (intrusive thoughts) and general mood. She is 45 lbs and started at 400 mg (200 mg twice a day) and we've settled at 2.4 grams/day. The studies talk about using inositol on adults, up to 18 grams/day with no negative consequences. Like an SSRI, you want to build up - both from a gas/cramps perspective and from a brain adjustment aspect. We ramped up over 4-5 weeks. If you decide to stop, you likewise need to taper down, not stop cold turkey. We used the powder as it helps you tweak dosing, and it has a very slightly sweet taste, like confectioner's sugar. I and my kids have taken it by just dumping a 1/4 tsp. on our tongues and chasing it down with water. You can also dissolve it in any drink. One thing I learned from Fcxfer is that there's a sweet spot you're looking for. Build up enough that you see the anxiety fade. But if you then see a bipolar effect, see-sawing between anxiety/OCD and sudden anger/loss of impulse control, back the dose down. Your sweet spot is just below the point where you saw the anger. Hope it helps!

Too much homocysteine is something that can lead to heart disease, so I think that's why it gets so much press and I think it's one of the methylation points that's had the most research done on it. "Cancer/methylation" will also give you a lot of books and research articles. But there are a lot of other methylation points that cause other illnesses. As far as I understand it, there is no one test or even an agreed upon series of tests you can do to "test methylation" - it's like saying how do I test for good health. Good health in what part of the body? I think of methylation as a line with 300 dots on it. You can't test at all 300 dots. You have to pick a few that seem like problems. You have to look at a clinical set of symptoms and say "you know, you fit a certain pattern. People with this pattern have problems with too much homocysteine. Let's test your MTHFR gene and see if you have a problem methylating homocysteine." But let's say you instead have a problem where you can't recall your dreams, get side stitches/cramps when you jog, have white spots on your finger nails and always have chapped lips. Then you clinically look like you might have pyroluria, so let's do a urine test for that. And if you do, we can supplement with zinc, B6 and some other things to get the conveyor belt working again. Methylation effects hundreds of chemical processes in the body and each methylation point is guided by certain specific genes. So what test you run depends on where you think the body has issues. Amy Yasko is a naturopath who treated many kids on the autism spectrum and identified a few dozen genes she feels play a role in the various symptoms of ASD. So one option is to test those dozens of genes and see what you find - and she then has recommendations/supplements for working around any genetically caused road blocks. Or you can pick a few of the more common genes and test those. Or you can do testing with a place like the Pfeiffer Institute and they also provide supplement suggestions based on your profile. But I don't know enough about them to say what they actually test or the cost. The other option is to look at the chart Nancy posted and do trials of supplements that help various road blocks. But I'd do that with a doctor's input, because some supplements effect other things (e.g. if you give lots of zinc, you periodically have to check copper levels, if you give a lot of magnesium, you need to watch calcium levels, etc). I'm not sure I've given a clear answer, but there is no single "methylation" test.

Oops - you're right. Homocysteine=>B-12 & folate => methionine or homocysteine =>TMG/betaine=>methionine Methionine=>ATP & magnesium => SAMe=>homocysteine I got myself twisted around there. Thanks! Guess I'll be tweeking my guinea pigs' pills...and re-watching the DVDs to set myself straight again.

Re: folate - folate is what gets converted into SAMe, so how can folate be bad for an under-methylator? I'm not arguing about the quote, I just don't get how this can be true. Unless your MTHFR genetic mutation makes it difficult to convert folate, in which case you'd use methyl-folate. But I'm just not getting how folate belongs in the list of bad things for UMs. Can anyone help me on this?? Have never had histamine levels tested - at least not that I know of, unless it's one of those things Dr B tests in his initial panels - that was 2 yrs ago. I'll have to check on the basophils - I don't recall their levels ever being out of range but it wasn't something I was focused on - will have to pull their labs.

Reading about methylation and detox and yada yada is all well and good, but nothing beats a story about a child who is suddenly freed from a crippling fear or behavior! I hope this is the start of many more happy events!

Kim - not sure I have the same understanding on what is good/bad for under-methylators...you wrote "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 in 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." I agree on all except the folate piece. My understanding is that if you're an under-methylator (which my DD is), folate is critical - that either you don't have enough or perhaps genetically you can't convert folate into SAMe and therefore need methyl-folate, but in either case, some type of folate supplementation would be recommended. I do share your impression on the B12 and am struggling when Yasko says B-12 is good for everyone. Can you help me understand your comment on the folate? It seems to be helping my kids (one is clearly an UM and one is possibly an UM but clearly not an OM). Jill - "So....maybe some of the symptoms we are associating with PANDAS aren't really related to the PANDAS anti-neuronal antibody phenomena at all, but the underlying condition that helped make the child susceptible to PANDAS?" - yes, 3 pages into this thread, you summed it up I personally don't take Welch's article as absolute. Both my kids cross over his descriptions of UM and OM, particularly on the "soft" traits like being musically inclined. DD is clearly an UM - allergies galore, drama queen, OCD - yet is incredibly artistic and tons of anxiety. DS is likely UM but has big anxiety, adhd and what looks on the outside like learning disabilities that are clearing up with methylation support. So we are a mixed bag. From what I gather from other reading about Welch and Pfeiffer, Pfeiffer has created 26 categories of methylators and feels you can be an UM at some points in the cycle and OM at others (tho this is only an impression - I'm not well read on Pfeiffer). Oh - and I don't know the answer to your histamine question - I never knew there was any difference between regular histamine and neuronal histamine. And if Dr T believes our kids are generally low histamine, I would respectfully disagree - at least in my house. TrgGirl - "How would you ever know what to give?" - That's where Pfeiffer or Yasko come in. For a certain amount of money, either group will run tests to tell you where your weak points are and what you should supplement. After 3 years of pursuing big gun treatments, I am too strapped to go this route and am doing my own "educated guessing" based on very selective/incomplete testing. "If phosphorylation activates the CamKinase, there has to be something that would make phosporylation conditions less prevelant and thereby decreasing the Camkinase!!?? " - this is sort of where I was trying to go with all my quotes from Wiki yesterday. For me, in my over-simplification of things, the "something" you mention could be calcium/glutamate and glutathione. And finally, to the very practical Maggie's Moon, to whom I owe a ton of gratitude for opening my eyes to this whole methylation topic by making me look up the word "histadelia", what tests? Depends on what guru. Yasko has two dozen genes she tests, genes that effect the methylation points she feels are most telling/important. The whole test panel can be ordered for $500 http://www.holisticheal.com/health-tests/nutrigenomic-testing. Or you can pick and chose the genes that you think are most likely suspects. I had both kids' MTHFR gene tested last month and just got the EOB - Quest charged $450, Cigna's "negotiated/discounted rate" (what a racket this whole thing is) was $50 and my portion was $10. You can get Yasko's book/DVDs and get the full list of things she tests and what they mean. But since your doctor is already tuned into this stuff, he/she may have other ideas that are more practical or targeted for you. I'm also looking at family history as a guide. I know some people are following this thread and aren't really sure why I'm so excited about all this. But it comes down to how Jill summed it up and what Suzan on the lyme forum posted yesterday - supporting the basics and supplementing at unique, genetically predisposed weak points - can really really help our kids get healthier and offer a bridge/bypass around the points that seem to fall apart and send our kids into "episodes". I think it's the same thing Stephanie2 and Fxcfer are finding, in their own ways. For me, treating methylation weak points is a way to prevent future episodes instead of relying on suppressive treatments once an episode is underway. It's not a one time fix. It could be a lifelong form of "medication" (albeit with vitamins and minerals) that puts our kids on a more permanent path of good health. I've been taking some of the same supplements and feel better than I have in 20 years. I know that sounds "infomercial hokey". But it's an OMG feeling - it's a complicated topic, but the result is an incredibly simple solution. Probably too simple. I'm sure there's more to good health than "just" methylation support. But it feels like I've found a really important piece we were missing.

One more thing I thought was worth mentioning - we started supplementing magnesium 2 months ago based on Dr Burrascano's "Guidelines for Treating Lyme" where he notes many lyme patients are magnesium deficient. Magnesium is a calcium agonist, so it's possible some of the improvements we're seeing are from the magnesium, not just the zinc/B6 for pyroluria. Magnesium is also a poop-inducer (too much gives you diarrhea), which is good for detox when you're killing bacteria that release toxins when they die (e.g. lyme and strep). Calcium is also an ingredient in biofilms and some biofilm busting protocols use EDTA as a cheltor. EDTA chelates aluminum (thought to be hoarded by bacteria in the biofilms) as well as calcium. When you use EDTA and/or magneisum, you need to keep an eye on calcium so you don't deplete too much, especially in growing bodies. So it's all connected. Nancy's totally right - it's absolutely about balance. The right balance for each unique body. For us, doing things that reduce calcium have been helpful. For Nancy Fcxfer, adding calcium with her current protocol is helping her son. But it seems that when you do things intended to help brain chemistry, by supplementing nutrients the body needs (as opposed to a pharmaceutical supplement), you could end up supplementing/bypassing a methylation block, and vice versa. Clog-free highways are good all the way 'round. It's "simply" a matter of knowing where the clogs are likely to happen - like anything about this is "simple." Yasko does such a better job of connecting these dots. All I can say is for anyone trying to look beyond antibiotics, this is really a topic worth exploring. Ok, off my soapbox - time to pull up a mold-harboring rug and replace it with wood flooring this weekend.

Nancy - the metaphors are only useful if they're accurate - and I have no idea if that's the case! Someone may pull up this thread two years from now and I'll groan at how wide of the mark I was. I can weave sentences together, but get totally lost when we start talking about basic chemistry. But re: your question on studies of TS kids and CaMKII = I think Leckman started sending selected TS kids to Cunningham about 2 yrs ago to have their blood run thru her lab. I think she found elevated numbers in them too. But I don't know if anything got published on it - and bear in mind this is when Leckman was just getting pulled back more and more into the Pandas domain, so he may have been hand-picking the kids he felt had the TS label but might have had infection-triggered causes. I think it was a testing the waters thing and not a full blown study. I also don't know which numbers out of the 5 Cunningham looked at were more often elevated. Kim - I think I'm still missing your point. You need to spell it out for me. I'm not disagreeing that anti-neuronal antibodies probably signal CaMKII and trigger inflammation and screw up neuronal signalling in the basal ganglia. Somewhere in her DVD, Yasko touches on her theory of how autoimmunity happens as a result of methylation blocks (hate to keep referencing her, as I'm not trying to hold her out as THE authority on everything - she's just my only source on this stuff at the moment). But from a treatment/coping in the middle of an episode perspective, or from a keep it from happening again perspective, I still go back to "ok, let's say autoimmunity has happened and this mis-firing is happening. How do you stop the chain reaction?" You mention MSR A and I don't know much more on that than what you've already cited. But I'm thinking supplementing that would be helpful. But maybe another option is to regulate NMDA receptors. Sorry to quote Wiki again, but it's the only thing on the topic I can remotely hope to understand... "CaMKII is activated by calcium/calmodulin, but it is maintained by autophosphorylation. CaMKII is activated by the NMDA-receptor-mediated Calcium elevation that occurs during LTP induction. Activation is accompanied by phosphorylation of both the alpha and beta-subunits and Thr286/287" So one thing is to regulate Calcium to begin with (with zinc/B6 or reducing glutamate in the diet). But if the horse is out of the barn, what if you look at regulating NMDA receptors (which also get activated by glutamate). "Calcium/ calmodulin dependent protein kinase II is also heavily implicated in long-term potentiation (LTP) – the molecular process of strengthening active synapses that is thought to underlie the processes of memory. It is involved in many aspects of this process. LTP is initiated when the NMDA receptors allow Ca2+ into the post synaptic neuron." Aside from Namenda, which a few people have had good experience with, NMDA receptors can be modulated with magnesium, sodium, K, zinc, copper. Plus "NMDA receptor function is also strongly regulated by chemical reduction and oxidation, via the so-called "redox modulatory site."[26] Through this site, reductants dramatically enhance NMDA channel activity, whereas oxidants either reverse the effects of reductants or depress native responses. It is generally believed that NMDA receptors are modulated by endogenous redox agents such as glutathione, lipoic acid, and the essential nutrient pyrroloquinoline quinone." Glutathione is huge in terms of detox and anti-oxidation, clearing the body of used junk and free radicals that can do damage. I can't tell you how many times I come across glutathione both in treating lyme and in my methylation research. Oral glutathione is poorly absorbed and liposomal oral glutathione, which might be slightly better absorbed, is expensive. Alpha lipoic acid isn't an option for us right now because we may have a mercury problem and ALA is a mercury chelator that crosses the BBB (which could move mercury into, as well as out of, the brain), so I don't want to go there right now. So my wallet has brought me back to encouraging the body to make more of its own glutathione, which brings me back to unblocking the methylation pathway. From my guinea pig experiment on one little boy, it seems that unblocking methylation points that are unique to him (either from genetic inability to synthesize certain nutrients or from poor diet which creates a nutrient deficiency) have made the whole system work better. It seems to be helping his brain chemistry and helping his body fight chronic infection - the source of any autoimmune trigger that's there. So geekiness aside, I still come back to shoring up the foundational, basic pathways to prevent car accidents and bad gas in the first place. My guinea pig still needs to get rid of some mercury (which I'm dreading) and still has to address biofilms. These things are probably still getting in the way of proper signalling/functioning. So to come back full cycle to Nancy's original article, I think you can look at the methylation/trans-sulfuration pathways and either do genetic tests or infer from family history or individual behavior where you may have pre-dispostions to blockages (my family struggles at Reno and Chicago). So I'm supplementing with folate to improve seratonin (don't need methyl-folate because DS's MTHFR gene is normal) and zinc/B6 for pyroluria and deficiency at the point where the immune system is supplied with weapons and soldiers. (sorry to mix metaphors). I'm hoping that once the body is cleared of remaining obstacles (metals and borellia) we no longer need to manage hyper-activation of CaMKII and co. because the body will be able to balance itself. I know it's popular belief that you can't reverse auto-immunity. I'm no longer sure about that. I don't have anything other than my guinea pig, who's on mutliple abx, so I can't say whether he'll ever be able to handle a strep infection without intervention. But he's getting so much better with supplements that for the first time, I'm willing to entertain the hope that he'll be able to leave his PANS label behind him someday (albeit he may always need to take certain supplements - I'm ok with that trade-off).

Ok, I'll take a crack at embarrassing myself. It's been a long time since I studied up an CaMKII, so I went to wiki for a review - and found I actually understood one or two more sentences than a few years ago. That is to say, I understood one or two sentences this time. But I still go too lost to speculate on what goes awry in our kids. Yasko speaks about glutamate and excessive excitotoxicty and I can see how high CaMKII would add insult to injury, literally. She refers to calcium as the bullet in the gun and calcium is too high in many of the kids she treated. CaMKII is dependent on calcium, so perhaps excess calcium leads to excess CaMKII. from wiki "As greater amounts of calcium and calmodulin accumulate, autophosphorylation occurs leading to persistent activation of the CaMKII enzyme for a short period of time. However, the Threonine 286 residue eventually becomes dephosphorylated, leading to inactivation of CaMKII." well, what if your diet doesn't contain enough threonine (cottage cheese, poultry, fish, meat, lentils, and sesame seeds)? Or what if you can address blocks in the methylation pathway to control glutamate and calcium? B6 and Zinc play a role in dis-arming calcium over-activity (according to Yasko anyway). I guess I don't look at methylation problems as too much methionine but more of a whole process. It's like the highway I-80. It starts at methionine(San Francisco) and maybe you're just fine but you could have traffic jams at Reno (where folate leads to seratonin) or Salt Lake (where B12 converts homocysteine back to methionine). Or you could get a flat tire in Omaha (where there isn't enough zinc to support both the immune system and regulate calcium in the brain) or a clogged gas line in Chicago (where transulfuration intersects and helps the liver and kidneys do detox)...somewhere between there and NYC, maybe things go awry with glutamate, calcium, CaMKII...and maybe it's because of the bad gas in Chicago or maybe it's the result of the crack in the engine block you started to develop back in the accident Reno but it's just now starting to show the damage. (Yes, Jill, I've worked on this bad analogy all day). So I know Cunningham has done all this work on CaMKII and anti-neuronals and I honestly don't know how any of it fits or doesn't fit with methylation. I would love to get her take on it. I think Hornig and Newell have both considered methylation in the equation, but what if any importance they give it, I don't know. Hornig has also looked at the impact of metals and autism a fair amount - not in regards to Pandas, but as part of her career. And metals would have brought trans-sulfuration/methylation into the equation somewhere. It's one of those topics I'd love to have them all explain but then...if they had answers, neither of us would still be on forums.

I was going to wait to post, because I'm not sure I have any answers for you. But I can see by your other posts that your stress levels are ramping up and I wanted to at least offer an opinion. In the first 2 years I dealt with Pandas, I was absolutely terrified of every germ-filled aspect of life. I cringed at every birthday party invitation, I said no to Jump Zone parties, I kept DS home on field trips. But I couldn't keep him healthy. Illness and episodes kept coming. We did pex, we did steroids. But no sooner did we catch our breath than something would trigger, someone would sneeze, and the nightmare would start all over again. I started to forget what "normal" or "baseline" looked like. The details of my story aren't important. I had a kid (two actually) who kept getting sick, kept slipping into Pandas behaviors. Aggressive treatments didn't give us lasting remissions (they helped us catch our breath and stay sane, but they didn't give us "wellness"). We had multiple Pandas experts on the payroll. None had the ideas we needed for our situation. I hit rock bottom last fall. What I've learned in the past year is that there was way more to my son's struggles than any single diagnosis or any single germ. There were things his body was lacking (or had too much of) that were keeping him chronically ill. It wasn't just about giving him enough abx. Or doing another round of immuno-suppressive intervention. We needed to address basement-level, foundational, whole body stuff. The single best thing we've done is to start working not with a "specialist" but with a generalist. Someone who blends conventional and integrative medicine and doesn't see a barrier between the body, the brain and the environment. I'm not suggesting you see any particular kind of doctor - there are great DAN!s and not so great, great LLMDs and not so great. Same for integratives, naturopaths, homeopaths etc. But for the kids who keep staying ill, who turn "chronic", it seems that the ones who are pulling out of the nose-dives are the ones who are doing things that support the body rather than suppress it. I'm not talking about the kids who have clear episodes and then clear and prolonged periods of normalcy. So I don't mean to imply that anyone who's not pumping their kid full of pills or remedies isn't doing the right thing. I'm only talking about those kids who never seem to enjoy more than a month or three before the rug gets pulled out from under them again. The ones where those conventional SSRIS and stimulants "should" work but don't. If you feel you're missing something, I'd encourage you to look for a local DAN or integrative and get their feelings on methylation, detox, nutritional testing and support, metals, chronic infections, etc. I hesitate to hit the "post" button because I don't want to sound like a broken record on this new-age thing called methylation. I don't want to come across like I'm criticizing those who are using IVIG successfully. My kids are on abx, we've done all the things discussed on this forum. So I'm not criticizing anyone for anything. Every child has unique situations. I know you love your child more than anything in the world and you just want him well again. I wish I had an answer. I don't. I can only offer that seeing a doctor who wasn't 100% conventional has made a big difference - for my family. So I throw it out there for food for thought. I pray you find answers that work for your son soon and that the awful feeling you have in your gut right now passes quickly. Best, Laura

Jill - the genetic tests aren't "Yasko's" per se. They can all be tested by any commercial lab. She's identified a dozen or so she feels are key and when you order thru her, you get her analysis of what it all means and what you should do about it. But the genetic tests can be ordered individually thru Quest etc. We only tested MTHFR fro two reasons - I need to understand how much one costs before doing more than I can afford and also because my family history points to this as a likely place we'd find a block. Haven't gotten an EOB yet - don't know the cost. And yes, it is an incredibly funny acronym. yes, many parents find glee saying "it's that $%#@ MTHFR gene that's been %^$#@ us all these years!". It just seems so perfect, doesn't it? As for how doctors will look at you...it's a "common" lab test - at least in the ASD world and integrative world. But yes, docs not in these worlds will probably give you the "you google too much" look. But if any Pandas doc would go there with you, it would probably be yours. Phila - don't know if Nutragenomics is this test or not. We did ours thru Quest. S - duh...just a few drops per day and she'll be fixed. How silly of you to keep dragging her to crazy LLMDs Of course, there is this little detail of chronic infection still left to deal with...and their love of metals....and.... Jill - thanks for the Smith link - I'll go check it out. Off to look up Factor V - will let you know if any light bulbs go off...

I have to chuckle - kind of a mixed blessing, eh? You finally get to the point that your kid looks normal (yeah!) but then no one believes you when you say it could all go away in a blink or they don't understand why you're so PTSD I have to add the caveat that DS still has catching up to do, still has some skills to sharpen. But he's @ a C+/B- level. My gut tells me he "should" be a B+ student when he's finally "there." But considering that 3 yrs ago, his teacher thought he was borderline ASD and in the bottom 10% of his class, this is definitely progress. Information in his brain has gone from goo...to jello...to maybe cookie dough - not rock solid yet, but way better than the goo days. There is still some hard work ahead of us (lyme, maybe some mercury) and that will set us back when we do it. But he's waking up. As for analogies, you're TV antenna is a pretty good one. I've tried thinking of others, but none work really well. Yasko uses car accidents. I see it as a decathalon. In the Olympics, you have these "perfect" athletes who can compete in not one, but 10 events. In a theoretical perfect person, the methylation cycle would go thru "10" steps (there are about 300 chemical processes, not 10) and at each station, the athlete would perform perfectly and the body would get the goodies it needed to work properly. So the athlete starts at the starting line with methionine and goes to station 1- folate - where it converts folate to methylfolate to make seratonin. We all know why seratonin is good. What's left over is homocysteine. You need things (betaine/tmg is one) to convert homocysteine back into methionine to start the process all over again. If you don't have enough folate in your diet or have a genetic mutation that hinders your ability to convert folate into methyl-folate (a mutation in your MTHFR gene), you don't win the competition and the body doesn't get enough seratonin. If you end up with too much homocysteine at the end of this mini-competition, this somehow leads to high histamine and is also implicated in heart disease, macular degeneration and other diseases that seem to "run in the family". (this is one of the (many) points where DUT and I go "ohhhh" and then the light flickers out...I don't totally understand the histamine piece yet). So if you have a MTHFR (MethyleneTetraHydroFolate Reductase) mutation (called a polymorphism to sound fancy), you can have tons of folate in your diet and still not be able to make enough seratonin because genetically, your body doesn't know how to turn folate into methyl-folate. BUT - Yasko says you can cheat in this race! You can supplement with a pill of methylfolate. So your athlete can then go on to make seratonin and compete in the next stage. Or...maybe your MTHFR gene is fine (like my DS) but have a diet poor in folate (and in any other vitamin, mineral or amino acid that's not contained in peanut butter, jelly or goldfish crackers) and not be able to make enough seratonin. Here too you can supplement (this time with the less expensive regular folate) and catch up to the "perfect" athlete. This goes on and on. This little methionine=>folate=>seratonin=>homocysteine=>B12=>methionine cycle is just one cog. Down stream (again - I understand what I read but am butchering the details/accuracy of all this), similar conversions happen with zinc and B6 for the immune system, betaine/TMG for the detox system to get rid of metals (get a methlyation block at the liver and you can end up with toxins and metals buildup), brain chemicals (glutamate, calcium, epinephrine, dopamine...). It's this whole complex series of long jumps, marathons, hurdles, relay races, sprints, high jumps...that keeps the body working properly. It involves the digestive tract, the liver, gall bladder, brain, thyroid, adrenals, immune system, bone growth... Throw in a genetic mutation or a nutritional deficiency along this pathway and all sorts of things can fall apart, like dominoes. Oh - and chronic infections totally screw things up because they intentionally mess with you and toss grenades at various methylation points to make you more toxic to suit their needs. Some of the docs speculate that bacteria can alter the chemical processes required for methylation. Some think maybe that when the immune system sucks up so much zinc when fighting an infection, less zinc is available in the system to go up to the brain and regulate the neurotoxicity of glutamate/calcium. Or maybe bacteria suck up calcium and aluminum and mercury to use in biofilms and foster deficiencies in the detox pathway so that they have a better supply of metals as building materials. It's all about war and supply lines and which side has the better logistics systems. There are other pathways - transulfuration, Krebs, others, that work in similar ways to keep the foundation of the body working. it impacts mood, energy levels, learning, memory, nerve remylination..it switches DNA on and off. Google methylation and you get all sorts of NIH hits on cancer. So it's all way beyond my ability to explain it. But you listen to these videos by Yasko and she talks about what happens when the brain gets too much glutamate and she's suddenly explaining all the behaviors we all live with in our PANS kids. And it comes down to the body's ability - or inability- to utilize essential vitamins and minerals - either from a genetic inability to do a conversion or a nutritional deficiency. KPU/Pyroluria - which both my kids have - is in a loose sort of way a "methylation" block where the body has lots of zinc in its plasma but due to a genetic mutation, can't utilize enough of it to supply the immune system and to control glutamate. So we mega-supplement and then it gets just enough to get the job done. But Nancy's right - it's a delicate balance. Too much of something isn't always a good thing. You can do educated guesses on your guinea pig kid or you can spend about $600 doing Yaskos' genetic tests and then buying supplements she feels help the body "cheat" and bypass the conversion steps it isn't capable of doing on its own. Not saying either is ideal. But for me, it's that thing that we seem to have been missing. If Pex got rid of auto-antibodies, that helped. If prednisone dampened inflammation, that helped. Abx helps keep the tick infection in a stand-off until we can hopefully re-supply the body's army and clean up the detox channels with the missing metyhlation supplements. Then...we wage a full blown war again and go after metals and cyst forms of bacteria and biofilms. And hopefully the body is in almost-olympic shape and can handle the things it hasn't been able to handle in the past. Ok, so a very poor analogy and a very rough description of how I understand methylation. Remember, I'm an art major/writer who spent chemistry class flirting, not paying attention. I hope my partners in crime chime in to correct my mis-statements.