LNN

I started this on the lyme forum in response to someone who wished there was a "Methylation for Dummies" they could read. It's by no means the whole picture but maybe it will explain why I think it's been so helpful for my family... Methylation Diagram"]Methylation Diagram[/url] Ok, this is very rough and my explanation may not be perfectly correct in the true medical sense, but I took the diagram Yasko and others use and added some comments in red. My comments are aimed at the C677T mutation of the MTHFR gene. I don't have as much knowledge on how the A1298 mutation effects everything, because no one in my family carries it and also because there's way less written about it. But I wanted to try to explain why knowing if you have a MTHFR gene mutation matters to a Pandas or lyme kid. (it also matters to people with a family history of heart disease, stroke, macular degeneration or history of miscarriages, but I'm not getting into all that). The thing that effects our kids the most are neuropsych and detox issues. Our kids tend to have problems with seratonin and/or dopamine, both of which are shown on the circle I numbered #3. You can see that the MTHFR gene plays a role in how your body synthesizes tryptophan into seratonin and tyrosine into dopamine. On the far right circle, where I have #1, you see how MTHFR plays a role. MTHFR is what makes folate (the inactive form of B9) into methylfolate (the bioavailable/active form). At the point in the circle where you see homocysteine, your body uses methylfolate and methylB12 to recycle homocysteine into SAMe, which in turn gets turned into seratonin (it also does other things but seratonin is the part I'm highlighting). If B6 (the active form is P-5-P) is present, MTHFR also influences how much homocysteine gets converted into cycsteine, which then gets synthesized into glutathione (among other things). Glutathione is the master detox agent. You'll also see (at the bottom of the circle on the right) sulfite. This is where the transsulfuration pathway starts. It too plays a role in detox. But I don't know enough to speak about it intelligently. I mention it as a starting point for your own research if you struggle with sulfa drugs like bactrim. There are many other genes - some known and studied, some not - some you can test for commercially, some not - that influence these circles. MTHFR is not the be all and end all for helping your kid to stop being crazy. But this illustrates why some of us have found good results when we supplement with methylfolate and/or methylB12. Since MTHFR converts folate into methylfolate, if you have one mutation on C677 (heterozygous), your body only does this conversion at about 40-60% efficiency. If you have two mutations of C677 (homozygous), you only do this conversion at about 10% efficiency. So you can see where you'd have trouble making enough seratonin and/or dopamine. You might also struggle to make enough glutathione, which becomes in high demand during periods of infection, mold illness or other stressor on the immune and detox systems. An SSRI (which can help some kids) only makes your existing seratonin last longer in the synapse between your neurons. Bypassing a faulty MTHFR gene by supplementing with already-converted methylfolate helps your body create more seratonin to begin with. Be aware that if you're using an SSRI or supplementing with tryptophan or maybe even melatonin, you may need to reduce or eliminate these other things as time goes on. I learned that the hard way this summer. I didn't reduce tryptophan and was giving too much methylfolate and ended up with a crazed, evil, bipolar child. Treating MTHFR is like being the little Dutch boy and plugging one hole in the dike. If it's your only leak, it can work wonders for getting the cycles working properly again. if you have other leaks (other gene mutations) than other steps might also be needed. Hope this helps.

Methylation Diagram Ok, this is very rough and my explanation may not be perfectly correct in the true medical sense, but I took the diagram Yasko and others use and added some comments in red. My comments are aimed at the C677T mutation of the MTHFR gene. I don't have as much knowledge on how the A1298 mutation effects everything, because no one in my family carries it and also because there's way less written about it. But I wanted to try to explain why knowing if you have a MTHFR gene mutation matters to a Pandas or lyme kid. (it also matters to people with a family history of heart disease, stroke, macular degeneration or history of miscarriages, but I'm not getting into all that). The thing that effects our kids the most are neuropsych and detox issues. Our kids tend to have problems with seratonin and/or dopamine, both of which are shown on the circle I numbered #3. You can see that the MTHFR gene plays a role in how your body synthesizes tryptophan into seratonin and tyrosine into dopamine. On the far right circle, where I have #1, you see how MTHFR plays a role. MTHFR is what makes folate (the inactive form of B9) into methylfolate (the bioavailable/active form). At the point in the circle where you see homocysteine, your body uses methylfolate and methylB12 to recycle homocysteine into SAMe, which in turn gets turned into seratonin (it also does other things but seratonin is the part I'm highlighting). If B6 (the active form is P-5-P) is present, MTHFR also influences how much homocysteine gets converted into cycsteine, which then gets synthesized into glutathione (among other things). Glutathione is the master detox agent. You'll also see (at the bottom of the circle on the right) sulfite. This is where the transsulfuration pathway starts. It too plays a role in detox. But I don't know enough to speak about it intelligently. I mention it as a starting point for your own research if you struggle with sulfa drugs like bactrim. There are many other genes - some known and studied, some not - some you can test for commercially, some not - that influence these circles. MTHFR is not the be all and end all for helping your kid to stop being crazy. But this illustrates why some of us have found good results when we supplement with methylfolate and/or methylB12. Since MTHFR converts folate into methylfolate, if you have one mutation on C677 (heterozygous), your body only does this conversion at about 40-60% efficiency. If you have two mutations of C677 (homozygous), you only do this conversion at about 10% efficiency. So you can see where you'd have trouble making enough seratonin and/or dopamine. You might also struggle to make enough glutathione, which becomes in high demand during periods of infection, mold illness or other stressor on the immune and detox systems. An SSRI (which can help some kids) only makes your existing seratonin last longer in the synapse between your neurons. Bypassing a faulty MTHFR gene by supplementing with already-converted methylfolate helps your body create more seratonin to begin with. Be aware that if you're using an SSRI or supplementing with tryptophan or maybe even melatonin, you may need to reduce or eliminate these other things as time goes on. I learned that the hard way this summer. I didn't reduce tryptophan and was giving too much methylfolate and ended up with a crazed, evil, bipolar child. Treating MTHFR is like being the little Dutch boy and plugging one hole in the dike. If it's your only leak, it can work wonders for getting the cycles working properly again. if you have other leaks (other gene mutations) than other steps might also be needed. Hope this helps.

.

Two things to put on your list for the LLMD - some people have an inability to handle sulfer drugs - it has something to do with a reduced ability to handle oxidative stress and clear toxins. I came across it in all my methylation research (maybe the transsulferation pathway?). But I didn't store it in my long term memory because both my kids can take septra without any issues. I remember when we started them, my LLMD saying "well, at least we know they can handle sulfer" but because my brain gets full on a regular basis, I let it go and made room for other stuff. The second thing I'd ask your LLMD about is ruling out heavy metals, especially mercury. Something about thiol groups and mercury binding to sulfers. But not sure you'd see a fever from this. Just toss it out as something I came across. I do hope it resolves. Sleeping on the floor is no way to keep up your own stamina. Hope tonight is better!

Red, thanks for the peroxide info. I squirt it in my washing machine at the end of every laundry day - into the hundreds of little drain holes to try to reach behind the drum and fight mold there. I also take the casing off the washing machine once a year to clean the inards. I ended up dismantling two A/C units, taking off covers, inside fan covers, etc and spraying the coils, stryofoam and fans with foaming bubbles, rinsing and then squirting with peroxide. Unearthed a ton of organic material - sludge, decaying bugs, mold - pretty disgusting and not stuff that would've been taken care of with just a spray bottle. One unit was over 10 yrs old and had never been stripped down like this before. The other unit wasn't too bad. Unfortunately, DD is still coughing. So more detective work ahead. But I now know that the other 2 units we have will also be disassembled and cleaned before being put away for the year. It definitely was worth doing. Edit - DD's cough disappeared last night - guess she needed some time for her inflammation to subside. But for the first time in 2+ months, she didn't cough at bedtime (even with her A/C on) and she woke up with no cough. Hoping this was the cause.

Sorry I didn't reply sooner - but was dealing with my own methylation issues at home. On the methyl-B6 - I've not heard of anything called that (not that I've heard of everything). The active form of B6 that I know of is P-5-P and this is what I look for in a supplement. For a child, 25mg would be on the high side and if you chose to supplement, I would start at a lower dose and build up only if you saw no negative effects (which would take weeks to show up). The one condition that would change my advice -kinda - is if your son has KPU (aka pyroluria). This is a genetic condition that causes you to pee away your zinc and B6 before the body can use it. My son has it and my daughter is borderline for it. In our case, both kids started at 19mg of P-5-P. My DD stayed there. My DS worked up to 75 mg over a period of months. I'd suggest you read up on KPU and ask your doctor about testing for it. I can send you articles if you're interested or you can search the forum for info. On methyl-B12 - this is very poorly absorbed - like 1% of what's injested if swallowed as a pill. It has to be taken in a sublingual form - held under the tongue while it dissolves. Many who need it end up getting injections. Again - work up in dose. On methyl-folate...make sure you supplement with something called l-methylfolate. It has to have an L in front of it or it's not in the active form. It can't be regular folic acid or folinic acid. I quickly searched Kirkman's site and didn't find any l-methylfolate products. I could've missed it, but be cautious. They do sell a methyl-B12. But the only products I know of for l-methylfolate are Thorne, Metagenics, Life Extension, Seeking Health and Holistic Health. Since you know your DS has the C677 mutation of MTHFR, it's important to only supplement with the methyl form of folate. I use this for myself (I too have one mutation of C677) - http://www.holisticheal.com/folapro.html My daughter takes one drop of this http://www.holisticheal.com/methylmate-b-nutritional-supplement.html in a medicine cup with water. I started my DD7 on this a few months ago at one drop and then worked up to 3 drops. This proved to be a big mistake. She flipped out, got suddenly angry and irrational, had muscle pain - it was horrible. We're back down to one drop/day and she's back to being a stable, (mostly) sweet and agreeable child. More is not always better. For a child, I wouldn't go any higher than 400mcg without a lot of caution and at a time when so many other things are in flux. If you chose to go beyond that dose (and I realize some people do) then I wouldn't be adding or changing anything else for several weeks after any dose increase. Since you're dealing with other detox issues, that will be hard. Also realize that as you start to supplement things for methylation, you may see a worsening of symptoms as detox conveyor belts get working again. Which is another reason to go very slowly on dose increases. Good luck! Oh - forgot to comment on Omega 3s - if you have pyroluria, you're advised to use evening primrose oil, which is an anti-inflammatory type of Omega 6. In those with pyroluria, they tend to be deficient in Omega 6s and both 3s and 6s compete for binding sites. So my DS needs to avoid Omega 3s and supplment Primrose instead. Another reason to test for this (it's a $70 urine test but not covered by insurance)

Well, you can go back to the old neighborhood and see my new post about mold, as you're one of the gurus I was asking for advice. So I guess I don't need to suggest mold here. You've been there, done that. Just do a mental check about air conditioners. My DD7 has scary depression and I'm no Good kind of thoughts. Tryptophan helped her a lot, as did proper methylation. I overdid things (see this post http://www.latitudes.org/forums/index.php?showtopic=18185) and I haven't added back any tryptophan - tho I will if school anxiety comes into the picture. I forget who, but someone here suggested I read this book and it really helped http://www.thewayup.com/ebook/f/TheWayUp.pdf The book talks about using both tryptophan and tyrosine but tyrosine didn't seem to do anything one way or the other for DD (It does help DS with focus tho). You can see why both supplements would help with depression by looking at the methylation cycle in Circle 2 http://www.heartfixer.com/AMRI-Nutrigenomics.htm where tryptophan gets converted into seratonin and tyrosine supports dopamine synthesis. Of course, your DS is 14, so no telling what role changing hormones and/or years of chronic illness could be playing. Just some ideas to run by your doc. I hope you figure it out soon!

I have a question for mold gurus. My DD has had a dry cough since the week school let out in June. Coughing every 5 seconds. It's worst in our house and seems to subside when we go to a store or outside for a few hours (maybe a few coughs per hour). So something in the house, right? But we went away for a week and she still had the cough - not as bad but certainly not gone by a long shot. Antihistamines and quercetin help a bit but not great. Delsym doesn't do much. An inhaler at bedtime helps enough that she can fall asleep. I reduced her dairy for a few days - didn't eliminate. She still ate foods that used dairy to make them, still used butter. But no milk, no ice cream, no cream cheese... Didn't seem to make a dent in the cough. So I'm wondering if it's our window unit A/Cs (no central air). We cleaned the units before putting them in in late May but only the places I could reach. Certain internal areas were out of reach. We normally only use window units in the bedrooms but this year we also used on on the main floor. And this year she's spent a ton of time inside due the the excessive heat. I don't believe she has mycoP, for reasons not worth enumerating. Just know I considered it but it doesn't fit the data I have. So, my question: Does anyone know an effective way to clean a window unit A/C? I have Thieves Oil and have used an old nebulizer to diffuse the oil in my bathroom. Can't say for certain but it may have helped (it's summer - the bathroom window has been open and there's been no moisture buildup. Hard to say if it's the oil or just better ventilation). Going to try to diffuse the Thieves Oil into the A/C units (wish me luck). But any better ideas? Buying 4 new units every season isn't an option.

It is most likely a herx from infection die-off. When certain bacteria die (lyme, certain strains of strep which cause scarlet fever, others) they release toxins which can cause symptoms that are sometimes worse than the original infection. These die-off symptoms can last a week, several weeks or longer. I say it's likely herx because it's happened so soon after starting the trio. I think it would take longer for yeast to become an issue. But it can be very hard to tell the difference between 1. abx doing nothing and what you're seeing is just a continuation of original symptoms 2. a herx or 3. yeast or side effect from abx It totally sucks. But for now, your best bet is to try to ride it out and read up on detox therapies. My son had to restart abx last week for his lyme. This week, he's had ice pick headaches and lots of muscle pain, and a wicked temper, extremely irritable and mean. Mortin helps but I need to give it on a regular basis. if I let too much time lapse, I lose the gains and have to start all over. He's also taking alpha lipoic acid, resveratrol and milk thistle (for the liver). A cold compress on the forehead helps at bedtime. We often see a return of old "Pandas" symptoms. Herxing is unfortunately a part of treatment. It's a perverse sign that the abx are killing something. On the other hand, too severe a herx is a sign that the body is being overwhelmed with toxins and slowing down treatment can help reduce symptoms. When my son's tics returned during an aggressive treatment, we needed to back down on dose and frequency. So it's a balance between killing the stuff yet not triggering more than your family can handle. If you don't see any serious reactions such as breathing problems or hives or heart racing, I'd personally push through and not retrun to the augmentin. Herxing is one of the major reasons we lyme moms get so annoying in pushing LLMDs. As a parent, it's really hard to navigate a herx. LLMDs can usually give you ideas and medical guidance to get you thru with less anxiety - still a rough time but with the assurance they've seen it all before and know how to lessen the impact of a herx without abandoning ship altogether.

Yes, I think you should definitely see someone whose practice is focused on lyme - an LLMD (lyme literate MD). There are some Mass. moms here who can give you some doc names. Our LLMD has helped my kids (Pandas/lyme/bartonella/pyroluria/methylation issues) make amazing progress by looking at things beyond Pandas.

I too am sorry you've been thru so much with so many doctors. But I have to respectfully disagree with this definition of what makes someone an LLMD. It's not just testing, it's also understanding the very complex and very individual needs that come up during treatment. This, in my book, includes a wide variety of abx, detox, considering yeast and metals and biofilms and cyst busting and nutrition and toxins and virals, etc. I give Dr B credit for testing, which is more than many doctors are willing to do. But his experience in treating lyme is not that vast and his focus is on Pandas. He certainly doesn't advise patients on or test for any of these other aspects and sometimes these are equally or more important in recovery. I respect him for getting some patients started on treatment while they wait to get in with an LLMD but based only on my own experience, I would not suggest someone with possible lyme or co-infections see Dr B. for long term treatment. Use him for his specialty. He himself will tell you that that specialty is not lyme. Not trying to bash him in any way. But didn't want this thread being stumbled upon years from now and not having a differing opinion out there for someone who's searching for options. We may have to agree to disagree on this one.

Lisa, Just wanted to post this link to an article about bartonella symptoms in kids, written by my LLMD. He's near Hartford.http://naturalnutmeg.com/?p=1677 It's a general overview. May not answer all your questions, but at least the info is coming from a doctor.

Many parents here use melatonin for their kids, either on a regular or as-needed basis. Be aware that if you use it for an extended period of time, your body may stop making its own and therefore, if you stop, you would need to taper down over a period of weeks to allow the body to re-start its own production. Start with the lowest dose possible - for a child as young as yours, maybe .5 - 1 mg Also, B6 is needed as a co-factor to turn tryptophan into melation. So you could also try supplementing B6 before trying melatonin to see if her body could make its own if it had enough B6. Melatonin helps the body fall asleep but it doesn't necessarily keep you asleep. I've taken it for insomnia and it does work to get the night started. But it doesn't prevent me from waking in the middle of the night. My whole family does use it on occasion but not on a regular basis. Personally, I don't wake up feeling as refreshed. (some people have the same complaint with prescription sleeping pills). But that could be because whatever is causing my insomnia to begin with (anxiety, stress, etc) could also be messing with my head while I sleep. It may not be from the melatonin itself. IDK.

This bill passed in the Connecticut Senate but the House did not take it up for vote before the end of the last legislative session, effectively killing it for now. (CT SB-206 was the bill number if you want to google) You can contact Lynn Johnson or Pandas Resource Network for additional info or to ask abut ways you can help (Dr B is or was associated with this non-profit). The NIMH study is also aimed to help provide supporting research that will hopefully lead to coverage, but as Kiera says, it's a long, frustrating process.

It's not that Igenex has a better reputation. It's that Igenex tests for certain antibodies that other labs don't. These bands are considered more lyme-specific. The other labs don't test for this because they follow CDC guidelines, which told other labs to exclude these bads because at one time, a vaccine was in the works that would've made everyone test positive on these bands. The vaccine tanked. Was pulled from the market in 2001-2. But the CDC has never added these more telling bands back into its guidelines. If you go to the lyme forum under helpful threads, there are some articles that talk about the pros and cons of various tests. Igenex is more expensive in that other labs submit their bills to insurance and the insurance co pays them directly. Igenex insists that you pay them directly and then gives you paperwork to submit your own claim. In most cases, insurance then reimbursed you 60-80% of what you paid. Not sure how it would work outside the US. The reason some people test thru Quest first is that it's possible to test lyme positive on Quest and your insurance could pay for the whole thing, thus saving yourself an Igenex bill. But if you tested negative on Quest, you could get different results from Igenex (because they test for additional bands) that would suggest lyme. So Igenex is a sort of second opinion. However, this whole rationale changes if you're outside the US insurance system. I would post this on the lyme forum or PM Momcap, who is also in Canada. There are two or three Canadians on the lyme forum. Re: the 30ml blood draw limit - never heard of that. Here's a WHO guideline study: http://www.who.int/bulletin/volumes/89/1/10-080010/en/index.html and here's an easier to understand article that mentions the 30ml limit http://www.drgreene.com/article/how-much-blood-too-much-guideline but these seem to be ethical guidelines rather than law. It seems that you should be ok even with multiple tests to be run. My kids have had 10-12 vials drawn at a time and not been turned away. Perhaps a call to Dr T or the lab would be able to give you an idea of how much blood is needed for each test. You can also look up wach test on Quests' website and it will tell you how much blood is required for each test.

This is a long presentation but has tons of info on the topic http://www.autismone.org/content/dr-amy-yasko-presents-assessment-metals-and-microbes-function-nutrigenomic-profiling-part-1- You can chelate copper by supplementing zinc. You can help the body chelate other metals by supporting mehtylation and glutathione production. One common supplement to increase glutathione is Alpha Lipoic Acid, which has a natural affinity for mercury and is often used as a mercury chelator. However, ALA crosses the BBB. So be aware that if there is mercury and there's more in the body than in the brain, there's a risk that ALA will bind to mercury in the body and carry it into the brain instead of into the liver/bowels for elimination. You can get Andy Cutler's book for ideas on chelating mercury and he has a yahoo support group. But I personally found him unhelpful. He is a "my way or the highway" kinda guy. Klinghardt likes chlorella to bind metals and toxins. Cutler says there's too great a risk that chlorella could be contaminated by mercury in the environment (nearly all of it is grown/cultivated in China, Japan and surrounding areas. Big concerns last year over what the nuclear disaster may have done to chlorella ponds. We used chlorella prior to this but aside from this worry, my big problem with it was that you need to take 30-45 pills/day (they're small but still...). There's also EDTA, DMSA and DMPS - all prescriptions but probably the most effective way to chelate specific metals under the guidance of a doctor.

A friend of mine wrote this blog and I thought it was worth passing along...Lord knows I've looked just like this chair! http://www.easytolovebut.com/if-mama-aint-happy-part-2/

We rotate probiotics - we have three different blends that we rotate throughout the week. I'm sure there are different schools of thought, but that's what we do. I'd follow your own gut (no pun intended). I was suggesting that you take anything with an antacid away from abx. I haven't looked at Pepcid. I don't think straight famotadine is a problem. We only gave it at night because DDs issue was Dyspepsia first thing in the morning. So the GI doc wanted it in her system before she woke up. We give abx at dinner time and gave the Pepcid at bedtime 2 hrs later. So I never bothered to look into whether timing was an issue because she took them apart from each other anyway. I give zinc at the same time as abx because the abx my kids use don't show up on a list of abx that don't go well with zinc. So it's never been an issue in our house. But if it's any comfort, my LLMD tends to be a bit loose on timing of supplements, especially things that are found in foods (like zinc and other nutrients). he figures that you get nutrients from foods in sporadic doses throughout the day, so try not to stress over timing of supps. But you do raise a good point. If you can manage it, it might be better to separate them, especially if you're using one of the abx that interacts with zinc.

Ngold24 - yes, Pepcid and generics come in a pill form. Generics are fine. I know some people have seen positive results with the pepcid and I'm certainly all for experimenting. Just please be aware that you shouldn't take any antacids with abx - they can hinder abx absorption. Always look at the ingredients and google to check for issues. Also, the common dose for this stuff is 10mg for an adult. 20mg/day is extra strength - for an adult. If you're going to experiment, go slow. My DD7 has been on 20mg Famotidine under a GI doc's care, but it was because her GERD and Dyspepsia were causing her to lose weight. Tiffani's DD (nearly an adult) is on a very high dose per a doctor's advice. But to try this as a histamine blocker for Pandas symptoms on your own, I think starting at 10mg would be a wiser course. FWIW - when my DD was on Famotidine, it didn't really effect her behavioral symptoms one way or the other. It has helped GERD at times but there have also been times it didn't help much (low stomach acid can also cause GERD, not just high stomach acid). So I think it may be worth trying for your own child but it may not be the answer and as others have said, you should be mindful of possible downsides. (sorry to be a wet blanket - just feeling cautious these days).

I don't think lyme is everyone's problem. But I do think that when someone doesn't follow the script and respond to other treatments, you need to suspect additional infections and/or chronic problems. I suppose I too would question whether your son had traditional OCD after all this, but you know he regresses without abx, so that's telling you something. Bartonella is a separate infection carried by ticks. I think it's generally assumed that if you have bartonella, you probably have lyme too because one tick can carry multiple bacteria and transmit multiple diseases in one bite. Because lyme is so endemic in the Northeast, it's conventional wisdom that if you suspect Bartonella, you treat for lyme as well (which pretty much just means you use both an intracellular abx like zith combined with an extracellular abx like augmentin) plus something that is effective against bartonella (like bactrim). It's the "better safe than sorry" approach - assume both are present and treat accordingly. My DS was dx'd with Bartonella despite a negative lab from Specialty Labs (now a division of Quest). He never had stretch marks or a rash. But the LLMDs tend to suspect Bartonella when the patient's symptoms are lopsided on the neuropsych symptoms and less physical symptoms. You can also have "neuro" lyme without Bartonella but I think the only difference this makes in treatment is a somewhat different mix of abx and herbal treatments. My DS was given a bartonella dx despite a negative lab from Specialty Labs (now part of Quest). I found very little research or info on bartonella so it was always hard for me to know whether it fit him or not. Here's a blog by someone who had it - it may help a little http://www.benbrew.com/lb/lb.html. But like your son, DS was put on zith+augmentin (which did nothing) and then we added bactrim. Once we added that, the improvements were significant. If I had doubts about lyme going in, those doubts vanished once I saw his response to the triple combo. Within 3 weeks, he was improving in a way he never had before. It was like finally finding the right key to the lock. I knew then that even tho we had a long road ahead, we were on the right path. So I think it's worth trying the 3 abx combo and giving it 6 weeks. Make sure you increase probiotics (we give 30 billion CFUs at bedtime) and give them at a time when digestion is slow, which reduces stomach acid that can kill the probiotics. Head over to the lyme forum and search on detox, since you may see herxing. My son's tics came back when he had a particularly hard time clearing toxins as the bacteria died off. He also got wicked angry as part of his herxes. Not fun, but we got thru it. I understand the idea of only treating one thing at a time. But I would move yeast higher up on your list. You'll be giving 3 abx. Yeast becomes a real danger. So you may want to look into adding an anti-yeast component. We use garlic pills but there are other options. IMO, you can't push yeast off. It needs to be addressed at the same time as any treatment that uses abx. It doesn't lend itself to an orderly, scientific approach. Not that you have to use nystatin or diflucan. Just that I think you need to be watchful and use an anti-yeast supplement at the same time. In boys, yeast is much harder to detect and tends to show up as behavioral, at least in my experience. I also encourage you to see an LLMD or integrative. This requires a doctor who specializes in this stuff.

Not when we first started, but when we got aggressive. Tics returned as a symptom of not being able to clear toxins quickly enough and the resulting inflammation. I'll email you.

My LLMD wasn't sure on this either and also figured it would be excreted. But this month has made me question that (and given me a new topic for next month's appt). From MTHFR.net: In working with MTHFR, there are a ton of nuances with people. It is not possible to simply treat the MTHFR mutation (I wish it was that easy) – you have to treat the person. Their lifestyle and dietary choices are what make the mutation so harmful in the first place. Without improving those, simply addressing MTHFR is not effective because many times people will feel worse. Many people with MTHFR test high in their serum folate and B12. My belief is that is because they are not able to convert them to the active forms. Both serum folate and B12 are the Inactive forms. So testing these is useful but not ideal. Why would testing inactive forms of folic acid and cobalamin be useful? If someone has high levels of folic acid, that is not good. This means there is a block in their body’s ability to process the folic acid into active forms or it simply means they are taking too much folic acid. As you and I both know as physicians, too much folic acid can increase the growth of pre-existing cancer cells. If someone has too much cobalamin, then that tells me they are likely taking the wrong forms of it. There is a RBC Methylfolate value that is valuable to measure. I’m in the midst of locating a lab that will do that. Amino acids, FIGLU and a bunch of other organic acids are also useful to measure. Measuring B12 levels is best done by looking at methylmalonic acid, history, their tongue and I’m sure other metabolites that I have not yet looked into. Keep in mind that methylcobalamin is destroyed if someone takes 500 mg of ascorbic acid at the same time. In terms of which folate is the best form, in my opinion, due to safety and the lack of MTHFR enzymatic function, the only prudent form to use is methylfolate. Methylfolate has many names and they are: Metafolin, 5-MTHF, L-5-MTHF, Methylfolate, Quatrefolate. In terms of which B12 is the best, in my opinion, due to safety and presence of environmental chemicals and heavy metals, only two forms stick out: methylcobalamin and hydroxycobalamin. Most do well with methylcobalamin but have to start it slowly. If people do not do well at all with methylcobalamin, there are things you to need to suss out such as overmethylation, too rapid of detoxification, and others. The Methyl folate trap is something to be fully aware of. You can give all the methylfolate you want to a patient or person, but if they don’t have enough methylcobalamin on board, the methyl group on the methylfolate is trapped – it doesn’t get released. This may explain why many people still mention they do not feel well, or still having their chief complaints, still even though they are taking very high dose methylfolate. If people cannot release the methyl from methylfolate due to lack of methylcobalamin, you may as well be offering them sand. Oral routes of these is sufficient. I prefer sublingual methylcobalamin over capsules but even capsules seem to raise methylcobalamin levels. I know this because of the immediate effect I see from people. If you can get a blend of methylcobalamin and methyfolate in a sublingual, that makes it easy with children and even adults. Remember how important it is to give methylfolate with methylcobalamin to prevent trapping. Now there are some people that will not respond well to this combination – and there are MANY reasons for this. However, there are also many people that will respond favorably. For those with high homocysteine levels or having the C677T MTHFR mutation, I am finding that the nutrients found in HomocysteX are proving to be very effective. If you are wanting to use prescription drugs for MTHFR, than I feel the best one out there is MetanX. Dr Neil Rawlins, out of Washington state also, has some videos on YouTube on MTHFR – on his MTHFR Solutions channel. The videos may be helpful for you. They are pretty basic but they give some good information. Lab testing is difficult to keep affordable. I am looking for the best and most effective lab test out there that is easiest for patient, client and physician. Right now I am using Metametrix Amino Acids, Metametrix Organic Acids, Metametrix Cardio ION, Metametrix ION and considering the Genova NutraVal test along with their NutriGenomic Testing. These tests are expensive but they do provide much information. Lab testing also depends on the type of MTHFR mutation an individual has. Those with A1298C mutations should have their biopterin/neopterin levels evaluated and Metametrix has a panel for that. I’d really like to see a test for peroxynitrate and super oxide. Those, I believe, are commonly elevated in those with A1298C MTHFR mutation and if those are elevated, that is in serious need of lowering as they are highly toxic neurologically. Dr Amy Yasko has some great information on the web in various places. She is truly remarkable when it comes to explaining methylation. She works mainly with autism. What we need to know as physicians is that autism is highly related to MTHFR defects as many children with autism are compound heterozygous MTHFR. I actually am developing a lab test specifically for those with MTHFR. This lab test will help the physician identify nearly all the functional markers needed in order to effectively help their MTHFR patient. There are millions of people with MTHFR and only 100′s of doctors (or less) know how serious it is.

Well, the whole point of my post was to use caution when dabbling in supplements - something I do quite a lot. For the record, I do run my ideas past our LLMD for guidance and we test things periodically. But the reality is that as much as I respect our LLMD, he treats chronic infections. Not methylation. He's aware of it, he knows how to test for it and what the basic protocol is. But he doesn't breathe it the way Yasko and Van Konyenberry and others do. And there are few tests that can really tell you exactly what you need or don't need based on your unique genes and lifestyle. So it almost always comes down to using your kids as guinea pigs. My lesson is just that you need to go slow and if you see symptoms, it may be triggered, in part, by a treatment that needs tweaking and not necessarily a Pandas flair. But with that as my legal disclaimer, when you talk about 5-HTP and methylfolate making her angry and silly, it makes me suggest that you look into over-methylation or a need to support neurotransmitters other than seratonin. You might want to research niacin, which sucks up methyl groups and helps with norepinephrine and epinephrine. But any starting dose should be low - like 50mg and not the 500mg you typically find in the OTC supplements. Then work up if you need to. But first, I'd try to test for MTHFR and/or other tests that give you a way to assess neurotransmitters in some way. My son has pyroluria, so Omega 3s/fish oil is not recommended for him. Pyroluriacs need Omega 6s more than they need Omega 3s and the Omega 3s compete for the same binding sites. So supplementing him with an Omega 3 would supposedly make his Omega 6 deficiency worse (based on my reading of Klinghardt). So we use Evening Primrose Oil - one of the non-inflammatory Omega 6s. If you're seeing an integrative doctor, ask about testing for pyroluria (also known as KPU). I have some articles if you want to read up. Probiotics - we give about 30 billion CFUs/day. Some people use way more. I think it's an individual thing. But probiotics can alter the gut terrain, usually in a good way, but again, for some people, too much is not better. We use stool consistency and frequency as a guide to gut health. My DH rolls his eyes, but both of my kids are now trained to announce "Mom, I'm going to the bathroom to poop." (Do you ever wonder what your life would look like on a reality show? Can you imagine the Kardashians announcing on camera that they were headed to the Loo to poop?) I'm not trying to suggest any specific supplement or approach. Ideally, we'd all have doctors who had accurate tests and could tell us exactly what to do. In 10 years, with epigenetics, maybe we'll be closer. But for now, I guess all I'm saying is that when you do find yourself having to play mad scientist, do it in small increments and always realize that just when you think you have it figured out, you'll probably need to tweak. Heaven forbid it should ever be easy!

I posted some details in this post http://www.latitudes.org/forums/index.php?showtopic=18185. Niacin (very small amt) did stop a meltdown last week when my DD's over-zealous mom had apparently put too much methylfolate in her system B I went back to the mthfr.net site and looked at the vitamins this doctor sells http://www.seekinghealth.com/optimal-multivitamin-240-vegetarian-capsules.html and got very confused, because on his other site, there's this discussion: Niacin is wonderful for some people with MTHFR and others it is not. The bottom line is this: - if you suffer from methylfolate side effects, take niacin. - if you have a COMT variant and you need to speed that mutation up to reduce your risk of anxiety or breast cancer, then a bit of niacin may be useful WHILE you are also supplementing with methyl donors – if needed. So I added my own question to his forum: Dr. Ben, I’m confused about multivitamins – specifically Seeking Health’s Optimal Multi-vitamin. It contains 400mcg of l-methylfolate and metafolin, which I understand is a good dose for those treating a C677T polymorphism. Yet it also contains 95mg niacin/niacinamide, which is 475% of the RDA. If niacin uses up methyl groups, and your response from Aug 7th says to avoid it unless you’re trying to undo an overmethylation situation, then why would the Seeking Health multi-vitamin contain such a high amount of niacin? I’m searching for a multivitamin that contains methylfolate (or at least doesn’t contain folic acid) as well as P-5-P yet the niacin has me confused. Thank you. You can check in and see if he responds here: http://mthfr.net/forums/topic/mthfr-tt-suppliments-niacin-concern/#post-3130

We've used andrographis, oregano mixtures and l-lysine (for epstein-barr). L-lysine worked great for the EBV but it may not work against other viruses. I think effectiveness depends on what virus you're fighting.