LNN

IMHO, 7.5 mg of methlfolate is way, way too high for a child. Most adults need only about 800mcg - with is 1/10 of the dose she's suggesting. I replied in detail to your other thread.

There's always so much information to process when you get started on this. The very first thing to remember is that your son is a toddler, so doses of anything will need to be small. The second is that he;s not going to be able to tell you how he feels, so behaviors become much more important and it becomes essential to only address one thing at a time or there's no way you'll know what's helping and what's not. Yasko suggests that the first mutation to be addressed is CBS. However, she's rumored to have recently changed her views on how CBS effects ammonia. So you may want to join one of her forums to get the latest advice on that particular aspect. Because I've already been the nutty mom for so many years, collecting pee and poop samples from my kids, by the time we started treating CBS, I just couldn't bring myself to shove my way into the bathroom with my 8yr old and wait 10 min until she relaxed enough to pee onto an ammonia test strip (and my hand). I've read inconsistent things about the reliability of the strips and I just drew a personal line there. That doesn't mean you shouldn't do it, I just can't offer any guidance there. Others follow her guidance much more closely. You need to find what's practical for you, But with a toddler, I'd be cautious and go low and slow. I use molybdenum for CBS and do keep an eye of sulfur. Three in my family add drops of moly to a medicine cup of water every morning. It has helped to remove a sulfur odor from urine. We've reduced the amount of protein in our diets but not severely. I strive for balance, not absence of protein. These are growing kids. Yasko recommends Yucca but Yucca is estrogenic and I don't think adding estrogen to a developing girl (or a preimenopausal mom) is a good idea. I do limit suflur foods and limit or avoid supplements and medications that are high in sulfates. If it were me, I'd probably add moly drops (I get mine from yasko's site) for a week or two and reduce protein. I'm not sure I'd add any other supplements without doing a lot of research on how they effect a toddler. Next, given how bipolar your son is, I'd probably add a very small amount of methylfolate. I don't think I could wait 6 weeks. There's no way my 8 yr old could tolerate 7.5 mg of it - she takes 1/100 that amount every other day - 67 MICROgrams (mcg). Some adults may need 7.5 mg but I'd be shocked by a toddler needing that much. Since yous DS's B12 levels are high, I'd probably add just the methylfolate - one drop - http://www.holisticheal.com/methylmate-b-nutritional-supplement.html every other day, for maybe 2 weeks to see how things went. Then assuming things were improving, I'd add some methylB12 or a combo methyl+hydroxyB12 sublingual. I use this http://www.amazon.com/Source-Naturals-MethylCobalamin-Flavored-Sublingual/dp/B001G7R8J2/ref=sr_1_1?s=hpc&ie=UTF8&qid=1376917531&sr=1-1&keywords=source+naturals+methylcobalamin+vitamin+b-12 and my DD uses this http://www.amazon.com/Perque-Activated-Guard-trade-lozenges/dp/B006UKGDOQ/ref=sr_1_1?s=hpc&ie=UTF8&qid=1376917571&sr=1-1&keywords=perque+activated+b-12+guard which has both methyl + hydroxy B12. It's speculated that about 10% of a sublingual gets absorbed. Or you can start with the one your dr suggested for a lower dose, tho as you add methylfolate, your son's B12 levels should drop and you may, over time, find that a higher dose works better. Some will be trial and error and some will be a matter of how well he can tolerate sucking on the sublingual. Different brands have different tasts and dissolve at different rates. I found that finding the right balance of methylfolate and methylB12 doses took about 6 weeks for my DD. If you OD him and get horrible behavior, you can stop everything for a few days and things should calm down. Then re-start at a lower dose until you find stability. Once I'd added molybdenum and then found the balance of methylfolate + B12, I'd addrsss the Vitamin D. By then, winter will be on it's way and "getting sunshine" won't be a practical approach. If I'm reading your results right and your son is VDR Taq +/+ and COMT +/-, then according the heartfixer, he needs and should tolerate plenty of a D3 supplement: Individuals (+/+) or (+/-) for VDR Taq defect have lower Vitamin D levels, make less dopamine, and will need and tolerate dopamine precursor substances and methyl donors. COMT (+/-) and VDR (+/+) behaves like COMT (-/-) and COMT -/- has low dopamine levels and needs and tolerates dopamine precursors and methyl donors (D3 is a dopamine precursor) My DD takes 3000 IUs D3 and 45mg of Vitamin K daily. K is important when supplementing with D. So we use one supplement that has just D3 and one that's a combo of D3+K. But since your son is VDR Taq +/+ and his levels are so low, you may need to use 5,000-10,000 IUs. Some docs say to supplememt once a week. Not sure why. We supplement daily. My DDs levels now hover around 50, tho our dr prefers above 60. That's probably enough for now. There are things you can supplement for the other mutations, like phosphatidylserine for BHMT (esp. if he has any ADHD symptoms) and keeping an eye on copper/zinc ratios for MAO-A. But that's down the road. CBS, MTHFR and VDR are the one's I'd focus on first. But always realize - I am not a doctor, have no medical training and have made plenty of mistakes on my own kids. take everything I write with a grain of salt and double check it with your own research. I am only comfortable screwing up on my own kids, not someone else's!

DS (Pandas/lyme) is AG DD (Pandas-ish but no issues since using methylation supps) is also AG DH who doesn't have Pandas but whose family originates from the Greek/Turkish isthmus is also AG I am GG As Norcal mom points out, gene mutations can raise or lower your risk to certain disease but it doesn't cast your fate in stone. It's often a combination of various genetic mutations that have greater infulence than any single gene. Cobbiemommy - As I understand it, this paper was looking to idenitfy a gene that could be used as a marker for diagnosis - much like Cuningham's test - something that says Pandas likely or Pandas not likely. They're saying TNF -308 may be a good marker for diagnosis. But as Norcal mom says and our small sample of results show, it may be limited to ancestry linked to Turkish decent and may not apply to others. It's possible a treatment like IVIG could suppress gene expression temporarily and allow symptoms to resolve. But that's me thinking out loud. I don't know of any research to support that idea. From all I can tell, no one knows why or how IVIG works for some kids with Pandas.

For those of you wanting to check your 23andMe raw data, these are the snp IDs TNF - 308 is rs1800629 with the wild type/ancestoral allele of G and the risk allele of A (so if you have GG this snp is normal, if you have AA you're homozygous +/+) Per snpedia, The (A) allele is associated with higher levels of TNF expression. This SNP has been linked to a wide variety of conditions: asthma, COPD, Crohn's, Grave's, heart disease, leprosy and lymphoma. http://snpedia.com/index.php/Rs1800629 TNF -850 is rs1799724 with the wild type allele of C and the risk allele of T. It is linked to an increased risk of alzheimer's, glaucoma, and other illnesses. http://snpedia.com/index.php/Rs1799724 but the research paper didn't find a link between Pandas and this snp.

I'm so glad you're finding answers! If you haven't run genetic genie on your 23andMe results yet, here are instructions on how to get the most from the data and what can help with various mutations: http://www.latitudes.org/forums/index.php?showtopic=3928&page=2 The heartfixer document listed in this link is particularly helpful. My kids had more than just MTHFR issues and addressing those other mutations took us another step forward. You mention how your son nose dives whenever he gets sick. One thing to remember is that when the body is sick, it needs extra supplies of things like Vitamin D and glutathione. Both Vitamin D and the methylfolate/methylB12 combo are involved in synthesizung neurotransmitters. The methylfolate/methylB12, along with P-5-P (the active form of B6) are involved in synthesizing glutathione. So if the body is already having trouble making enough of what it needs and then it has an infection to fight, the system may go haywire. Resources that were barely enough to make a certain level of neurotransmitters might be diverted away from that task and sent to help the body fight infection. So there isn't enough left to do the neurotransmitter production and you'd see a nosedive in moods and behaviors. My son struggles with detox and develops tics when he can't get rid of toxins fast enough. If your son has had a block in the methylation cycle, he may be low in glutathione and his tics may be also related to a problem with detox. Over time, you may find that treating his methylation issues help with the tics. When you start the methylfolate and methylB12, start LOW and up the dosage slowly. When I went too fast and too high, I got bipolar behaviors back in spades. i had to stop and re-start and my daughter finally found her sweet spot at a very low dose. My daughter had high Cunningham labs and abx did help her initially (she may have had lyme, we're not sure). But she was very deficient in certain vitamins/minerals and didn't have enough resources to balance neurotransmitters and fight a cold or bacterial infection at the same time. So she'd get "bipolar" when she got sick. So regardless of what the labs show when you get them done, the link above may help strenghten the underlying system and make moods smoother on an every day basis. Good luck with things!

It could be herxing but when we used combos that produced prolong herxing, we switched the combo. It's one thing to have to endure intense mood issues/OCD for 2-3 weeks, but after so many years of Pandas, no one in my family had the emotional resources to handle an intense herx that lasted 5, 6, 7 weeks once the lyme dx came. So if it got to be more than we could handle, our LLMD would look for a different mix. DS stayed on zith for the entire lyme treatment (2.5 yrs). We rotated into that the following: augmentin, bactrim, omnicef, rifampin. We also used tindamax for 5 weekends but had to stop - DS couldn't handle the herx. Tried it a year later and had to stop after 2 weekends. So not every abx worked for us. But DS eventually beat it. Perhaps ask about switching augmentin for a different extracellular abx.

My LLMD felt that there was no need to chase our tail with additional testing. He felt that bartonella was a possibilty and he picked combos of abx that would address both lyme and bartonella at the same time. He recommended we spend the money on treatment and supplements, not additional labs. I know we used bactrim for many months early on for bartonella but we also used omnicef and that packed a powerful punch for DS. I can highly recommend my LLMD, who's in the Hartford CT area. He has a long waiting list but gives priority to kids, so if you get onthe waiting list and let them know it's for a child, you may be able to get in in a month or two. He takes an integrative approach and uses both abx and herbals as well as supplements. Let me know if you want his name.

I can't answer your question about AVP - we had a normal result so I never delved into it. But I will suggest you double check what lab ran your C3a and C4a - there's one test - and It's been so long I can't recall which one but am thinking it's the C3a/C4a - that Shoemaker used to insist be done by Jewish Labs. Other labs' results weren't reliable in his opinion. Then Quest bought Jewish Labs and now it's hard to make sure this particular lab runs your specimen. Like I said, I don't remember if it was the C3a/C4a test or something else. We last ran it about 3 yrs ago before the Quest take over. But about 8 months ago, I asked my LLMD about re-running the test in question for a follow up measurement and he said it's not worth running anymore because the numbers Shoemaker relied on can't be predictably replicated since you don't know which lad within the Quest network would be running your specimen. So if you're seeing other labs that don't line up with the C3a/C4a results, maybe double check on whether this was/is the test that had to be specifically run thru Jewish Labs.

never mind - 911RN's answer is much clearer than mine was.

Using 23andMe data to get guidance on your child's methylation issues. This info may change as new apps or knowledge evolves but at the moment, this is what I'd suggest if you're just getting started with methylation... Hopefully others will share additional sites and articles and then we can pin this to the top of the forum. For background info, I've found the following articles helpful: http://autismnti.com...o_Education.pdf - a good "methylation for dummies" resource http://forums.phoeni...arts-1-7.11488/ - the writings of Rich Van Konynenburg, who died in 2012 but did a lot of research to help the Chronic Fatigue community by taking Yasko's ideas and applying them to those with CFS who needed a practical approach and may not have a local doctor's support Once you get your 23andMe data, do the following: 1. Log into 23andMe and go to the tab that allows you to download raw data. Download onto your hard drive. (this will be a zipped file) (suggestion - also copy this zipped file onto a flash drive and store it in a safe deposit box or in a second location so you'll always have access to it - helpful as knowledge evolves and a decade from now, you want to explore the data in a new way. But realize it contains highly personal info and guard it appropriately). 2. Go to http://geneticgenie.org/ and follow the instructions for running your data thru the app. Currently, the app is free but I support the author's request for a $10 donation. The labor she's saving you is immense and I personally think she deserves the modest compensation. There are two profiles you can run - the methylation profile and the detox profile. I'd run both but I personally use the methylation profile more often. 3. Print the reports. Before you leave the screen that shows your results, hit "ctrl + print screen" or "ctrl + a" then "ctrl +c" to capture the data. Then go into a new Word document and hit ""ctrl + v" to copy this data into a Word document you can save. That way, if you lose the paper report, you have it electronically. 3.b. There are other apps that provide similar info plus additional analysis. One is found on http://www.mthfr.net and another can be found on www.mthfrsupport.com, which has developed an app called Livewello that has additional capabilities. Always make sure you understand how your data is handled and what you're agreeing to when you use an app like these. I've only used apps that say they delete your data immediately after running your report. No way to verify this of course, but do use these apps with an understanding of the privacy issues. 4. To interpret your report, I'd use this doument - http://www.heartfixe...trigenomics.htm It's a bit old - written in 2008. So the understanding of these genes may have evolved. But it's the best layman's practical guide I've found so far. It's worth reading all the way through and then, for simplicity, I've taken the document and copied it into Word. Then I deleted those sections that didn't apply to my results. I also deleted the extra things like recipes. I was left with a report that only addressed the genes where I had issues. Then I re-read this shortened document and highlighted specific author recommendations, such as "those with this gene mutatin should avoid x, y, z and supplement with a. b. c." This gave me a customized roadmap. Applying the information in this heartfixer document can take some time and require some trial and error - and additional research. It takes awhile to look at the big picture of your unique gene combos to determine if you need a lot of methyl donors or only a few. Many of these methylation genes effect one another and either magnify or counteract each other's effects. You also need to research the supplements that are suggested. For example, Yasko and Roberts (the author) both suggest Yucca for those with a CBS mutation. yet Yucca is estrogenic, meaning it acts like an estrogen supplement. So I'd be personally uncomfortable using this supplement, especially without a doctor's guidance. While I resepct the knowledge of these experts and am forever grateful for their ideas, you still need to do your own research and understand the full range of effects any supplement can have. At the present time, Yasko is revising her views on the CBS gene and backing away from the role it may play in ammonia. So always check that the things suggested here are still the current thinking on the subject. It's a rapidly evolving field. 5. You now have an outline of what things to supplement and what to avoid. It's currently suggested that you start by addressing CBS and SUOX mutations, as these effect detox and you don't want to re-start sluggish cycles upstream without having a clear detox pathway. A good overview of the steps to take, in what order and why, is in Yasko's book http://www.dramyyask...pdf_02_file.pdf I've used this as an outline but confess that I had to read it in small doses. Aside from addressing CBS first, my personal experience is that it's been best to address the remaining mutations as a group, rather than supplementing for one mutation at a time. For example, rather than supplementing only for MTHFR and then moving on to MAO-A, I added small doses of various supplements for each, to try to find balance. Always, always start at ridiculously small doses and always introduce only one supplement and wait a few weeks before adding in another. Otherwise, you'll have no idea what's causing a negative response and you'll need to start from scratch. To put things in perspective in terms of dosing, you may read that an adult typically uses 800mcg of methylfolate if they have MTHFT issues. But I know one child who does best on 67mcg every other day and one who needs 10mg every day. It can be very trial and error in terms of dosing. As a very general rule of thumb, I've been able to tell if something's having an effect within a few days to a few weeks. When I've crossed the line and dosed too high, I've seen an increase in the same symptoms I was trying to eliminate and I've stopped or lowered the dose for a few days/a week and then seen things calm down again. It's great if you can work with a doctor when developing your regime but make sure that doctor is well versed. I've seen some doctors mean well but give some really uninformed advice. There's a list of practitioners who do consults on www.mthfrsupport.com and some of these practioners participate on the mthfrsupport facebook page. But do realize they are not all MDs. Some have other degrees that allow them to call themelves doctors, such as a chiropractor. But verify their credentials and make sure you're comfortable with their training. Here are some other good sites I refer to often: http://mthfr.net/ - on this site is a good article explaining the different forms of folate http://mthfr.net/l-m...thf/2012/04/05/ and suggestions on what to do if you "overdose" on methylfolate while trying to dial in on what's right for you http://mthfr.net/ove...udy/2012/06/27/ A good comparison of 23andMe vs. the testing Yasko does http://www.mthfrsupp...nel-or-23andme/ A good article on why MTHFR isn't the end of the story http://www.mthfrsupp...of-methylation/ the impact of mold on methylation http://www.mthfrsupp...xins-and-mthfr/ MTHFR and thyroid http://mthfr.net/mth...ers/2013/07/18/ Source to create a custom vitamin/supplement: http://www.vitaganic.com/

Some have had success documenting immune deficiencies or encephalitis and coding it that way. Some have found more affordable options with home infusions. If you search the archives, there are a few threads about different companies that do home infusions. If you don't have success getting coverage, oout of pocket can be very expensive. Not everyone is in a financial position to swing it. But that does not make you a bad parent and you won't be depriving your child of the "only" or "best" chance for wellness. IVIG can be great for some. But others have recovered without it, following other paths. So try no to tie yourself into a pretzel with guilt if it means too much of a financial strain. There is no single path or protocol that works for everyone and if IVIG ends up not being an option for you, know that you can still get your child well. Good luck!

MAO-A preferentially deaminates norepinephrine (noradrenaline), epinephrine (adrenaline), serotonin, and dopamine (dopamine is equally deaminated by MAO-A and MAO-B. (wiki) So Yasko is right (obviously) but it also plays a role in how quickly or slowly you degrade dopamine. The document I rely on (http://www.heartfixer.com/AMRI-Nutrigenomics.htm#VDR%20Taq:%20%20Vitamin%20D%20Receptor%20Taq%20Abnormality) focuses more on the dopamine aspect so that's where my head was at when I replied to T Anna. I'm confused by the Yasko quote - she says in the first breath that COMT+ and VDR Taq + contribute to lower dopamine yet the next sentence talks about how COMT + mutations inactivate (i.e. degrade) dopamine to a lesser (slower) extent. In my mind, if you're inactivating dopamine at a lesser rate, you're going to have more dopamine floating around, not less. Heartfixer says COMT + leads to higher dopamine, not lower, unless I'm totally reading it wrong. So I get how being VDR Taq + (which would slow down your ability to turn Vitamin D into dopamine) leads to lower dopamine. That's why I wrote that T Anna's son should be able to tolerate Vitamin D supplements but because he's hetero, and has other mutations that also factor into the equation, it may require some trial and error. But you've lost me with the quote that says COMT+ contributes to lower dopamine. It gets very confusing and there are so few doctors who really know enough to guide us. I think to a certain extent, you need to read everything thru the filter of knowing your child's personality and making gut decisions on whether he needs more or less methyl donors and/or dopamine precursors and then do some trial and error. No matter how much I study this, if I walk away from it for any length of time, I get confused again. If the two Yasko statements make sense to you and aren't contradictory, please help me get it clear. Because it doesn't make sense to me.

you give me too much credit. I remember the discussion but no idea when it was - sometime this past '12-'13 school year. The jist was, the teachers might be moderately interested in Pandas, but only for about 2 minutes. After that, they only want to know what it means to them, how they might need to adapt or accomodate, what does it look like? I used to try to educate about OCD, all the different types, and I'd get strange looks, like maybe my son was crazy. I wanted to educate so they'd recognize it in other kids, since 1-2 kids out of 100 have OCD. But they didn't want to be schooled. Only the ones who had kids of their own with medical or anxiety-related issues asked for more info. Most just wanted the cliff notes on how to deal with my son in very practical terms. In my epiphany, when one teacher said "how will I know he's in a flare and his 504 should kick in?" I finally explained how my DH and I know it. "You hear it" I said. "You hear the way you talk to him and you realize you're reprimanding a lot more than usual. You need to direct him more, need to intervene with peer conflicts more, he gets into more disagreements, does brainless things like have pencil wars with his classmate instead of doing his writing prompt. It's not that other boys don't do these things too. You'll just see more than what's normal for my son. More inattention, more social conflict, more anxiety, more neediness for reassurance and direction, more discipline - like someone's turned up the volume from 3 to 10. You'll reflect on the day and realize you said his name about 100 times and most of it under negative circumstances. So you "hear" a flare because you'll suddenly hear yourself saying his name all day long, realize that he played a large role in your day and it sucked up your energy. It will then dawn on you that this is not normal and that's how you'll know something's not right. That's when you need to send me an email so we can collaborate." It worked better than any articles, history or schooling I could've given them. They needed a concrete tool and this worked. I got a few emails because of this and it was really helpful in alerting me that something medical was going on. You must be getting ready for teacher meet and greets! So I'll toss in that what the teachers also liked was I prepared a 5x7 index card with "things to know about my son" for each teacher. I kept it small so it forced me to be concise. Giving them an essay is too overwhelming and confusing for them. It had bullet points with very practical teaching tips. * works best when seated near but not next to a friend * allow unlimited bathroom breaks/alert me if they become frequent * if test scores don't reflect what you think he knows, please re-test orally and give partial credit if he then answers correctly. * learns best orally and kinesthetically * has spatial learning challenges * I briefly tell them about his medical history so they understand what he's been thru (telling them he had to travel 600 miles to be in the Georgetown PICU for dialysis always makes them startle and appreciate the severity of his illness). But only what I can re-tell in 2 min. and I've stopped preaching. Handling the medical side of the disease is my responsibility, not theirs. Maybe he's not listening because of OCD but they really only care that's he's not listening, not the reason why. So i want them to understand why not being different is so important to him, why he's so afraid to admit he doesn't know something, why mechanics of writing is difficult. But mostly, I just want them to know the practical steps they can take to help him learn - all in a 15-20 min conference.

I think she was prescribed Valtrex- just a 7 day course. Not sure of particular virus-just seems to be something the abx is missing, so thought we'd give it a try if nobody has an absolute horror story with it. She gets IVIG every 3 weeks, so titers measures are unreliable. I really, really, really have to thank you for all the MTHFR info. Have seen huge improvements since treating for MTHFR. Haven't done 23&me yet, but just the MTHFR treatment has drastically reduced fight or flight episodes. In fact, I think she's in a flare right now because of OCD issues and bed wetting. There is some measure of anxiety there....but no fight or flight meltdowns/rages. I can't stop smiling! So, so glad the MTHFR stuff has helped. You've got me smiling now too! Don't have a vast knowledge of anti-virals/Valtrex. But when abx weren't doing it completely for DD (the one with MTHFR) it turned out to be additional methylation stuff that we were able to address after 23andMe results. So that may give you additional things to work on if/when you do that test. Turned out to be the key for DD and it was something abx couldn't fix. Of course, you kow about yeast too. But thought I'd write it down to add it to the brainstorming list.

My DD has chronic fatigue. We've tested thyroid, adrenals and vitamin deficiencies (Spectracell blood test). She is low on B12 and has MTHFR mutations, so getting extra B12 into her is my current focus. So maybe ask the dr about B12/methylation (sorry - I know I post about that too much. I know it's not everyone's issue). Last year, DD has EBV and it took her a long time to get her energy back 100%. L-lysine did it for her. Glad to hear about the new doc. What role is she serving? Primary? Integrative? I need a new primary for the kids (love our LLMD but I need someone for regular stuff too). Can you PM me her info?

Thanks for the link with the "feminine touch" Nancy! I laughed out loud! I do agree that the author may have an agenda and I cut out even worse endorsement propoganda he had at the end of his article. But I was intrigued by the premise and did find other sites that listed the same high histamine/low histamine strains, and at least one site referred to Theoharides, the mast cell guru. So i'm interested in hearing what others come up with as to whether this is reliable info. Our LLMD has ben talking about moving DS toward probiotics that contain a much higher percentage of bifido strains (pr40 - I'm using bifido as a shorthand for Bifidobacterium) - specifically looking for probiotics with high levels of Bifidobacterium infants and Bifidobacterium longum rather than probiotics with high percentages of Lactobacillus strains. Kirkman has a product called Bifido Complex™ Advanced Formula: Bifidobacterium bifidum (BB-02) 4.0 billion CFUs Bifidobacterium lactis (Infantis Bi-07) 4.0 billion CFU’s Bifidobacterium lactis (BL-04) 3.0 billion CFUs Bifidobacterium breve (BB-03) 2.0 billion CFU’s Bifidobacterium longum (BL-05) 2.0 billion CFUs Total: 15.0 billion CFUs Bifidobacterium bifidum is the most prominent microorganism strain setting up residence and implanting itself in the lining of the large intestine. B. bifidum is known for producing acetic and lactic acids, which lowers the pH (increases the acidity), of the intestine. The B. lactis Bi-07 strain (formerly known as B. infantis) of friendly florahas been referred to as the “infant” or “baby” bacteria because it is the primary resident of the intestinal tract of infants following their birth. B. lactis is known to inhabit the intestines of both infants as well as adults although it is found in smaller quantities during the aging process. It is considered a beneficial probiotic strain that can safely and effectively be supplemented with infants, children and adults. B. lactis (Bl-04) is well recognized as a close relative of the B. bifidum and other B. lactis strains of Bifidobacterium. This strain possesses some of the same functions as the related Bifido strains and fiercely competes for attachment sites on the mucosal membrane helping the colonization of the product. B. breve stimulates colonization of bifido strains in the large intestine, while repressing the colonization of harmful bacteria. It also stimulates the mucosal immune response. B. longum is among the first strains to colonize the sterile digestive tract of newborns and predominates in breast-fed infants. Bottle-fed infants have a different micro flora, and this may be related to the higher risk of diarrhea and allergies in these bottle-fed babies. Therefore adding B. longum can help the digestive system to operate smoothly, blocking the growth of harmful bacteria and stimulating the immune system. I know some probiotics have made DS worse, so I'm grateful for anyone who comes up with research on these or other strains worth investigating. Love you guys for your abiltiy to vett ideas and products!

At one point, my son was also on a similar combo for lyme - cefdinir/omnicef 2x/day, zith 1x/day and tindamax (instead of the metro but they're in the same class). But... I would strongly recommend not starting them at the same time. We introduced cefdinir first and used that plus zith (he'd already been on zith for a long time). It produced a very large herx. Cefdinir is one of the abx that crosses the BBB. Two weeks later, we started weekends of tindamax, which also produced a very large herx. it ended up being too much for him to handle and we had to stop the tindamax after 5 weekends. In hindsight, I'd have done the cefdinir for at least a month or until the herx had subsided. Only then would I have introduced the tindamax and even then, I'd have done a low dose only twice, not four time, on the weekend, until I knew he could handle it. It was a case where we were way too aggressive and he couldn't detox quickly enough. I think the inflammation we triggered was at least as harmful in the short term as the lyme. If we'd gone slower, he may have been able to handle it. live and learn. We survived. But my advice would be to go slow and listen to symptoms as your guide, not a calendar. You may also want to ask your doctor about anti-inflammatories or detox support. Good luck!

If anyone has a good source for the bifido probiotics mentioned here, I'd love the link. Hard to find the less common strains. I've been experimenting with butyrate, which is a fermented product, to crowd out yeast. But have to say I don't like what I see. Perhaps it has something to do with increased histamine.

Found this article and thought it was worth passing on. I'm sceptical of the recommended company and diet programs but found the general info on which probiotics raise and lower histamine valuable. http://www.bulletproofexec.com/why-yogurt-and-probiotics-make-you-fat-and-foggy/?utm_medium=email&utm_campaign=Beyond+Organic+Probiotic+Post&utm_content=Beyond+Organic+Probiotic+Post+CID_ef03d869b8ce71fa7ef52e8c50448368&utm_source=Campaign+Monitor+Mailing&utm_term=Click+here+to+read+the+entire+article I've copied the bulk of the article but left out the final paragraphs that gets sales-y on some specific products. Click the above link if you want the full article. For the past 30 years, obesity and autoimmune disease rates have been on a steady rise. At the same time, a little-known condition called histamine intolerance has become much more common. It’s a challenge to figure out the root causes and common denominators for these three seemingly unrelated health trends. Lots of research shows that an unhealthy gut contributes to obesity, diabetes, rheumatoid arthritis, autism, depression, and chronic fatigue. The gut biome (intestinal bacteria), your diet, and the gut lining determine gut health. Modern lifestyle factors like the overuse of antibiotics, and diets high in processed, preserved, and histamine producing foods (i.e. most conventional yogurt), all contribute to an unhealthy gut biome. To repair an unhealthy gut and decrease histamine intolerance you need to eat an anti-inflammation diet, minimizing histamine producing bacteria and maximizing histamine degrading bacteria. This isn’t just science to me – it’s personal. My history of 15 years of heavy antibiotic use for chronic sinus infections as a young man set me up to have a histamine intolerance. Biohacking that problem helped me to discover the histamine connection years ago, but the link to the gut biome was quite elusive. Why Your Gut Biome has Changed and Why Probiotics Have Become So ImportantThe human gut biome (microbiome) consists of about 100 trillion bacteria cells – more than 10 times more than there are human cells in your body. You could even start to think of your gut biome as a significant organ in your body, so keeping it healthy and balanced is essential to reduce disease and optimize performance. As we learn more about the makeup of good and bad bacteria in the gut biome, researchers are also doing cutting edge DNA microbiome sequencing to show how people’s gut biomes are changing on a population level. Gut biomes are becoming imbalanced because there are less good bacteria and more bad bacteria available in modern lifestyles and the standard American diet. When microbiota balance is out of whack, your body develops chronic inflammation, which can become autoimmune disease or other serious health problems. New research even suggests that diabetes may be an autoimmune disease triggered by poor gut health.1 By now, most people know that one contributor to a broken microbiome is overuse of antibiotics. Antibiotics may wipe out whatever bad bacteria you were hoping they would, but they can also clear your system of the really good bacteria that promote a healthy gut. A number of studies show that even a single course of antibiotics can permanently alter the gut flora.2,3 Aside from antibiotics overuse, poor diets and environmental toxins also wreak havoc on the gut by wearing down the protective barriers of the intestinal walls, eventually creating a leaky gut. As I’ve written previously, foods that are heavily processed, preserved, and filled with chemicals and toxins, damage gut health. Common types of these gut-damaging foods include: gluten, processed meats, sugar, most alcohol, mold toxins from coffee and chocolate, and more. These foods increase histamine levels, which in part is due to bad bacteria. I will go into more detail about histamine inducing bacteria in foods later in this post. One of the reasons I’m such a fan of fresh, organic, local meat and vegetables is that our gut bacteria ultimately are related to our soil bacteria. Soil bacteria are the microbiome of the planet. Industrial agriculture has permanently modified soil organisms – molds and bacteria – so that they produce more toxins than ever before in history. The genes that form those toxins get shared with the bacteria growing in your gut. Since the advent of antibiotics, scientists have been all over fighting bad bacteria. Now they are beginning to understand the importance of good bacteria and microorganisms in our guts. This “good bacteria” theory led to taking supplemental probiotics as the go-to way to help re-populate our guts after courses of antibiotics or other stressors. Although some probiotics are good for you, sadly (for yogurt companies especially), most manufactured probiotics are only minimally effective at re-populating the gut biome. It is becoming apparent that not all strains of probiotics interact with the gut in the same way. Histamine Intolerance and Which Bacteria to AvoidDisturbance in gut biome also plays a significant role in creating the recent rise in histamine intolerance. Histamine intolerance is the result of an imbalance between the breakdown of histamine and its buildup in the gut. This is generally caused by a deficiency in the DAO enzymes (found in intestinal mucosa) that helps metabolize and breakdown dietary sources of histamine. A histamine overload leads to increased inflammation and many other symptoms including: skin irritation, hives, throat tightening, increased heart rate, nasal congestion, migraines, fatigue, heartburn, reflux, and weight gain.4 Unlike other food allergies and sensitivities, the response from histamine intolerance is cumulative and not always immediate, so it is harder to pin point right away. 5,6 This is personal – I’m histamine intolerant but have been able to reduce my intolerance dramatically following the advice I’m sharing in this post. **Sneak peak into a future post: Histamine is not the only bioactive substance that can lead to histamine intolerance. Biogenic amines also interact with DAO enzymes in the gut.** Although there are some genetic causes for a decrease in the production of DAO enzymes, the change in people’s gut biome is also responsible for histamine intolerance. Even if someone has a normal production of DAO enzymes, the levels may still be insufficient when placed against high concentrations of histamine-rich foods and histamine producing bacteria. Many of the histamine-rich foods are found in the red (toxic) areas of the Bulletproof Diet infographic, but some common sources of histamine-producing foods are surprising. The following foods often have higher histamine contents or help release stored histamine: Matured or fermented foods (depending on the bacteria and yeasts that are involved in the process): Sauerkraut, Kombucha, pickles, fermented SOY products, soy sauce, fish sauce, fermented coffee (Upgraded Coffee is safe). Some fermented foods are acceptable as long as it doe not cause a negative reaction. Microbiologically produced foods: Most yogurt, buttermilk, kefir, mature cheese, sauerkraut, wine (especially reds) Processed, smoked, and fermented meats: Lunchmeat, crappy bacon, sausage, pepperoni, salami, etc. Alcohol: Red wine, white wine, champagne, beer Yeasty Foods: breads made with yeast Certain Vegetables, Fruit, and Nuts: tomato, canned vegetables, strawberries, kiwi, pineapple, peanuts, cashews, walnuts, and more. Different types of bacteria and probiotics also play a part in histamine regulation. Some probiotics are necessary for proper gut function (where histamine lowering enzymes DAO form), but some strains actually raise histamine levels. The different strains of studied probiotics are categorized as (1) histamine producing bacteria, (2) neutral bacteria, or (3) histamine degrading bacteria.7-1 Histamine producing bacteria: Lactobacillus casei, Lactobacillus reuteri, and Lactobacillus bulgaricus (Found in most yogurts and fermented foods). Neutral bacteria: Streptococcus thermophiles (also in yogurt) and Lactobacillus rhamnosus (shown to down regulate histamine receptors and up-regulate anti-inflammatory agents) Histamine degrading bacteria: Bifidobacterium infantis (found in breast milk), Bifidobacterium longum, Lactobacillus plantarum, and some soil-based organisms. Some of these bacteria form histamine when they break down protein in foods, even vegetables, whether the food is in your gut or fermenting in your kitchen. Now you know why I’m skeptical about throwing a bunch of cabbage into a bucket to let it ferment. You just don’t know what you’re getting. The Probiotic Bulletproof Coffee Failed ExperimentFour months ago, I had a brilliant idea. I’d add a prebiotic (food for probiotics) called fructooligosaccharide to my Bulletproof coffee in the morning, and take a probiotic with it. Over the last decade, I estimate I’ve spent upwards of $25,000 on various strains of probiotics to fix my gut, including the time I took pig whipworm eggs. Anyway, I took an “acidophilus pearl” capsule because those were convenient and I was out of my normal probiotic. The one I took had lactobacillus casei, a histamine producing bacteria in it. The result? I gained 10 pounds in seven days, with a noticeable inflammation in the gut. I stopped the probiotics and it took 7 days to lose the weight. Probiotic supplementation is a catch-22 and you should not just grab whatever has the best label on the shelf. If you have histamine intolerance, or you want to avoid developing it, experiment with avoiding histamine producing bacteria and focus on histamine degrading or neutral bacteria. So just toss out the Lactobaccillus casei from your cupboards and fill your refrigerator with Bifidobacterium longum, right?! Uh… yeah… The good news is there are protocols, diets, and product already developed to help you reduce histamine-rich foods, avoid histamine producing bacteria, and consume more histamine degrading bacteria. 3 Ways to a Healthy Gut Biome and Reduce Histamine Intolerance #1) Follow the Bulletproof Diet to heal your gut:Eat a low histamine, anti-inflammatory diet like the Bulletproof® Diet as the primary way to protect your gut and reduce histamine intolerance. Eating prebiotic foods that selectively stimulate the growth of good bacteria in your gut is also helpful. Prebiotic foods in the ‘green portions’ of the Bulletproof diet include: Jerusalem artichoke, avocados, and vegetables high in soluble fiber like sweet potatoes, Brussels sprouts, asparagus, and turnips. Onions are in the yellow zone because of what they do to alpha brain waves, but they also have prebiotics in them. Self-tracking tools like the Bulletproof Food Sense App help to detect physiological responses to foods you are sensitive too that may be due to excess histamine concentration. Although histamine intolerance can be difficult to diagnose, one of the common symptoms is an elevated heart rate. Using the Food Sense App after meals (as instructed) will use the iPhone’s camera sensor to measure your heart rate and compare it to your baseline heart rate. If there was an increase of more than 16 beats per minute, then this signifies a food sensitivity and helps you zoom in on gut wrecking or histamine-rich foods. #2) Reduce histamine producing bacteriaAvoid histamine producing bacteria like Lactobacillus casei, Lactobacillus reuteri, and Lactobacillus bulgaricus that are mostly commonly found in the majority of yogurts and fermented foods, especially when they are not balanced by other species. Rampant unbalanced focus on lactobacillus in yogurt has led to this problem. #3) Increase histamine degrading bacteriaFinding ways to get more histamine degrading bacteria into your diet can be difficult, but is great for gut health and key to reducing histamine intolerance. High phenol foods like blueberries, coffee, and chocolate can feed a type of gut bacteria called firmacutes.

Bees - my DD did allergy shots for 18 mos (Dr B mailed us the extracts and local VNA gave the shots). The shots worked great but DD hated the needles and it was always high drama. It actually got worse as we graduated from once/week to once/month because her coping tools got rusty in between visits. Between the trauma of holding her down and my concerns about what was in the adjuvants (never could find out for certain if it contained aluminum), we discontinued. But our ENT does allergy drops http://www.allergychoices.com/WhyAllergyDrops/ It's one drop under the tongue, 3 times/day. No drama. Just the need to remember to give all three doses. We only started in January, so they didn't make a huge difference this past spring but she was slightly better than last year (when we'd stopped shots). But I'm willing to continue at least until next summer to see if they help her for next spring. Here's an NPR article on it http://www.npr.org/blogs/health/2013/03/26/175348886/allergy-drops-under-the-tongue-may-be-fine-alternative-to-shots

My DD uses zyrtec with no ill effects. I like Quercetin as well but it only seems to last 4 hrs. So she takes zyrtec at bedtime and then for the times allergies are peaking, she adds quercetin 1-2 times during the day. Also - nasonex long term can have negative side effects, such as thinning the nasal skin and reducing your ability to fight infection. It's a steroid and it may be causing some problems. I seem to recall something about a rebound effect when using antihistamines for a long time. But can't remember the details. Two things that made a huge improvement for my DD was getting mattress/boxspring/pillow encasements http://www.missionallergy.com/ and making sure her window a/c unit was clean and mold/dirt free (the drip pan can get quite nasty if not cleaned annually). The encasements made an enormous difference. Also, take all bedding (blankets, mattress pads, pillows) and run them in the dryer on high heat for 15 min to kill dust mites and remove some of their waste. If there are any stuffed animals, run them thru the dryer weekly. I never paid much attention to these things until I got desperate but they reduced DDs debilitating reactions by about 70%. You can also get XClear - a nasal spray with xylitol to help fight infection. You can get it at whole foods and health food stores. But be sure to have your child tilt his head in all directions after spraying it in so it has a chance to enter the sinus cavity and not just roll down the throat or be blown out if he begs for a tissue.

If you do have apnea, I would make a CPAP machine part of your treatment plan. They are a bear to wear and aren;t the best thing since sliced bread, but they do help you breath, which is a pretty important part of getting well. I would also consider looking into methylation issues and possibly 23andMe genetic testing. You may very well have Pandas and I do hope for your sake that abx help restore your neuropsych struggles. But as an adult, your health problems have probably become more complex and you may need to tackle more than one insult. I agree that Dr B is probably your best place to start if you'll be in the US for any length of time. Good luck!

T. Anna - I just started a new topic that may help you on next steps. With a CBS +/-, it's no wonder your DS struggled with those high doses of NAC. With MAO-A + he may find that niacin helps reduce a quick temper. But he also has MTHFR +/- and COMT +/- so you'll need to strike a balance on the need for methyl groups. You may need to use a blend of methylfolate, methylB12 and hydroxyB12 rather than just the methyl forms. You'll also need to do some trial and error on how much Vitamin D supplementing he can handle. B/c he's VDR Taq +/-, he "should" be able to tolerate a D3 supplement, but with the COMT +/- and MAO-A +, he'll have a tendency to run high in dopamine and not be able to degrade it quickly. He may be the kind of person who needs a few minutes to decompress alone after a stressful event, lest he lash out if expected to cope too quickly. So if you need to add D3, consider a lower dose more often or one with vitamin K added.

I thought I'd start a separate thread to discuss how to use 23andMe data to get guidance on your child's methylation issues. This info may change as new apps or knowledge evolves but at the moment, this is what I'd suggest if you're just getting started with methylation... Hopefully others will share additional sites and articles and then we can pin this to the top of the forum. For background info, I've found the following articles helpful: http://autismnti.com/images/Website-_Yasko_Education.pdf - a good "methylation for dummies" resource http://forums.phoenixrising.me/index.php?threads/documents-by-rich-van-konynenburg-parts-1-7.11488/ - the writings of Rich Van Konynenburg, who died in 2012 but did a lot of research to help the Chronic Fatigue community by taking Yasko's ideas and applying them to those with CFS who needed a practical approach and may not have a local doctor's support Once you get your 23andMe data, do the following: 1. Log into 23andMe and go to the tab that allows you to download raw data. Download onto your hard drive. (this will be a zipped file) (suggestion - also copy this zipped file onto a flash drive and store it in a safe deposit box or in a second location so you'll always have access to it - helpful as knowledge evolves and a decade from now, you want to explore the data in a new way. But realize it contains highly personal info and guard it appropriately). 2. Go to http://geneticgenie.org/ and follow the instructions for running your data thru the app. Currently, the app is free but I support the author's request for a $10 donation. The labor she's saving you is immense and I personally think she deserves the modest compensation. There are two profiles you can run - the methylation profile and the detox profile. I'd run both but I personally use the methylation profile more often. 3. Print the reports. Before you leave the screen that shows your results, hit "ctrl + print screen" or "ctrl + a" then "ctrl +c" to capture the data. Then go into a new Word document and hit ""ctrl + v" to copy this data into a Word document you can save. That way, if you lose the paper report, you have it electronically. 3.b. There are other apps that provide similar info plus additional analysis. One is found on http://www.mthfr.net and another can be found on www.mthfrsupport.com, which has developed an app called Livewello that has additional capabilities. Always make sure you understand how your data is handled and what you're agreeing to when you use an app like these. I've only used apps that say they delete your data immediately after running your report. No way to verify this of course, but do use these apps with an understanding of the privacy issues. 4. To interpret your report, I'd use this doument - http://www.heartfixer.com/AMRI-Nutrigenomics.htm It's a bit old - written in 2008. So the understanding of these genes may have evolved. But it's the best layman's practical guide I've found so far. It's worth reading all the way through and then, for simplicity, I've taken the document and copied it into Word. Then I deleted those sections that didn't apply to my results. I also deleted the extra things like recipes. I was left with a report that only addressed the genes where I had issues. Then I re-read this shortened document and highlighted specific author recommendations, such as "those with this gene mutatin should avoid x, y, z and supplement with a. b. c." This gave me a customized roadmap. Applying the information in this heartfixer document can take some time and require some trial and error - and additional research. It takes awhile to look at the big picture of your unique gene combos to determine if you need a lot of methyl donors or only a few. Many of these methylation genes effect one another and either magnify or counteract each other's effects. You also need to research the supplements that are suggested. For example, Yasko and Roberts (the author) both suggest Yucca for those with a CBS mutation. yet Yucca is estrogenic, meaning it acts like an estrogen supplement. So I'd be personally uncomfortable using this supplement, especially without a doctor's guidance. While I resepct the knowledge of these experts and am forever grateful for their ideas, you still need to do your own research and understand the full range of effects any supplement can have. At the present time, Yasko is revising her views on the CBS gene and backing away from the role it may play in ammonia. So always check that the things suggested here are still the current thinking on the subject. It's a rapidly evolving field. 5. You now have an outline of what things to supplement and what to avoid. It's currently suggested that you start by addressing CBS and SUOX mutations, as these effect detox and you don't want to re-start sluggish cycles upstream without having a clear detox pathway. A good overview of the steps to take, in what order and why, is in Yasko's book http://www.dramyyasko.com/wp-content/files_flutter/1327512160_9_1_1_8_pdf_02_file.pdf I've used this as an outline but confess that I had to read it in small doses. Aside from addressing CBS first, my personal experience is that it's been best to address the remaining mutations as a group, rather than supplementing for one mutation at a time. For example, rather than supplementing only for MTHFR and then moving on to MAO-A, I added small doses of various supplements for each, to try to find balance. Always, always start at ridiculously small doses and always introduce only one supplement and wait a few weeks before adding in another. Otherwise, you'll have no idea what's causing a negative response and you'll need to start from scratch. To put things in perspective in terms of dosing, you may read that an adult typically uses 800mcg of methylfolate if they have MTHFT issues. But I know one child who does best on 67mcg every other day and one who needs 10mg every day. It can be very trial and error in terms of dosing. As a very general rule of thumb, I've been able to tell if something's having an effect within a few days to a few weeks. When I've crossed the line and dosed too high, I've seen an increase in the same symptoms I was trying to eliminate and I've stopped or lowered the dose for a few days/a week and then seen things calm down again. It's great if you can work with a doctor when developing your regime but make sure that doctor is well versed. I've seen some doctors mean well but give some really uninformed advice. There's a list of practitioners who do consults on www.mthfrsupport.com and some of these practioners participate on the mthfrsupport facebook page. But do realize they are not all MDs. Some have other degrees that allow them to call themelves doctors, such as a chiropractor. But verify their credentials and make sure you're comfortable with their training. Here are some other good sites I refer to often: http://mthfr.net/ - on this site is a good article explaining the different forms of folate http://mthfr.net/l-methylfolate-methylfolate-5-mthf/2012/04/05/ and suggestions on what to do if you "overdose" on methylfolate while trying to dial in on what's right for you http://mthfr.net/overmethylation-and-undermethylation-case-study/2012/06/27/ A good comparison of 23andMe vs. the testing Yasko does http://www.mthfrsupport.com/yaskos-comprehensive-methylation-panel-or-23andme/ A good article on why MTHFR isn't the end of the story http://www.mthfrsupport.com/why-mthfr-is-only-a-part-of-methylation/ the impact of mold on methylation http://www.mthfrsupport.com/living-with-mold-mycotoxins-and-mthfr/ MTHFR and thyroid http://mthfr.net/mthfr-and-thyroid-disorders/2013/07/18/ Source to create a custom vitamin/supplement: http://www.vitaganic.com/

Do you have a particular virus in mind? Not a big area of expertise on my end, but I've gathered that like abx, a particular antiviral must be a good match for a particular virus in order to be effective. My go-to when the kids seem to have some sort of bug is l-lysine, because it's OTC and seems to have a pretty good range of effectiveness on common viruses. But it doesn't work on eveything. We've also used artemisinin a few times, with mixed results. Is this just something you're considering adding into Allie's regimine or do you think she's got something specific going on?