LNN

If you use the search feature in the upper right corner of the forum, you'll find many discussions on inositol, 5-HTP, tryptophan and NAC for OCD symptoms. Here's one http://www.latitudes.org/forums/index.php?showtopic=16301&hl=inositol#entry131055 where I listed a lot of articles on inositol. We stopped using it because it lessened anxiety but didn't cut through OCD or compulsive behaviors. We also found lyme after I posted this and that took us down a very different path. If you do decide to use it, be sure to titer up your dosing slowly, increasing maybe every 5-7 days. If you go too fast, you can get gas and stomach distress. Also if you stop, titer down every 5-7 days. Don't stop cold turkey. You need to treat this the way you'd treat an SSRI.

My son used to feel rapid relief from prednisone within 2-3 days. It was like a sign of relief flooded over him. While prednisone is an immuno-suppressant, I've always been told that it take extended use before it will compromise your immune response. 10 days is a normal course for poison ivy and my pedi has always said there's no suppression for many weeks. So I'd guess that what you're seeing is relief from inflammation. It makes me wonder if there isn't a chronic infection of some kind still lurking. I'm glad it's bringing such great results! Not sure why you were trying to lower the zith dose but perhaps this suggests she needs to remain on abx or maybe even a combo abx to continue to treat some source of infection.

We don't have the A1298C mutation but use Yasko's Holistic Health methlymate B drops for DD and Yasko's Folapro pills for DH. To second your comments that if you child has mutations, you or your spouse do too - this goes beyond just MTHFR. We found many mutations on other genes in the methylation cycle when we tested. I totally appreciate the privacy concerns, but some of these mutations can greatly influence your risks for heart disease, diabetes, macular degeneration and other life-altering diseases. Knowing you have them can give you a chance to potentially alter your - and your children's - health path.

When my DD had epstein-barr (a precursor to mono), l-lysine 600mg BID is what finally got rid of it. She started to feel better within a few days and was back to 80% within 3 weeks. L-lysine is an amino acid, available at health food stores, amazon, etc. It may be worth a try.

I'd start with this: http://www.heartfixer.com/AMRI-Nutrigenomics.htm and then re-read it when you get your 23andMe results back. I'd also read Yasko's book http://www.dramyyasko.com/wp-content/files_flutter/1327512160_9_1_1_8_pdf_02_file.pdf or watch her video http://www.autismone.org/content/dr-amy-yasko-presents-assessment-metals-and-microbes-function-nutrigenomic-profiling-part-1- but it will make a lot more sense once you have your results and know which topics to really pay attention to.

Thanks Mayzoo. My kids and I are all +/+ for this one. But as I said, no TD issues and none in my family history...thank goodness.

Neil Rawlins, Stewart Kendall and Rich Van Konynenberg are the ones who've done the most writing on the subject (plus Dr Roberts who wrote the heartfixer document). The practitioners associated with mthfrsupport.com and FB mthfrsupport seem to incorporate most of Yasko's hypotheses into their treatment protocols. But if you're looking for research that supports/prove/disproves her theories - I don't know of any. A lot of these people seem to say "this is true" when the reality is "we think this is true..." Rich Van K is the only one I know of who's published research that supports Yasko's theories as it pertains to CFS and ME. I've looked on Pubmed and mostly I find methylation studies in terms of cancer. A few studies support specific Yasko theories as it pertains to one specific enzyme or one small piece of the methylation pathway. But I don't know of any comprehensive study that looks at the whole diagram (which I believe is accepted fact) then took her suggestions on how to bypass mutations and validated those suggestions. I believe the methylation cycle and related cycles (BH4, Krebs/Urea, methionine and transsulfuration) are "fact". It's her treatment protocol that is in need of validation. If you find anything, please share!

Just browsed our data - both kids and I have a number of +/+ mutations for this gene, meaning both my parents gave me mine and my DH must also have at least one mutation in order for both kids to be +/+. Do you have the snp id # that's specifically for this form of dyskenesia? 23andMe gave me at least 2 dozens snps for this gene. It hasn't been on my radar. My DS only had one event that resembled dyskinesia when he took one dose of tamiflu and DD has had one clonus event when she had an anti-cholergenic response to too much cold medicine. But neither have had dyskinesia issues during flares.

This is what I use for my DS - who has normal MTHFR and is an overmethylator. Sorry for the confusion. I didn't realize in your original post you meant a B Complex specifically for those with MTHFR issues. There is no way my DD with MTHFR could tolerate this particular blend. That's why she takes the methylfolate drops from Yasko along with a separate sublingual methylB12 from SourceNaturals. I have yet to find a B Complex or multi that suits her needs. She limits fortified cereals but not entirely and in theory, this is ok b/c she is heterozygous. Her MTHFR enzymes work, but only about 50% efficiency. I imagine it would be a much bigger issue for those who are homozygous (+/+) but every individual is different and some of the impact will depend on your other mutations and how they interplay with each other. HFM (hereditary folate malabsorption) is a much more serious condition so I think what Peglem points out is true but unless you have MTHFR +/+ I'm not sure you need to - or even can - avoid synthetic folate entirely. Still, I agree you wouldn't want to be buying a supplement that contains synthetic folate if you have MTHFR mutations. Mayzoo - if your DD has MTHFR what led you to feel she needs hydroxyB12 and not methylB12? Just curious.

Ours is a B Complex http://www.sourcenaturals.com/products/GP1327/

A good friend of mine has been pusling zith with her Pandas DD for 2-3 yrs. For the first week of the month, they do M/T/W/Th/F/Sa then for the next three weeks they do M/W/F/Su. Repeat. Zith has a half life of 36 hrs, so this schedule keeps the zith in the system all the time. During mild flares, she'll do 5 days of zith daily, regardless of where they are in the month. Has worked very well for them. I think this sort of pulsing schedule makes more sense than 5 on 7 off.

It depends on what kind of B12 you need. DS uses a Source Naturals B complex with adenoB12 and a higher amt of niacin (@50 mg) because he's an overmethylator and needs things that use up methyl groups. It's a sublingual but has a horrible taste. So I crush it up and put it into a gel capsule. I'm sure we lose some in the gut but it's better than nothing. It's made him less edgy. DD needs methyl groups. So she uses Source Naturals sublingual methly-B12 and Holisitic Health (Yasko) methylfolate drops. then gets her other Bs from diet. This makes her less moody. I cannot find a multi that has the exact forms in the exact doses we need. So we do a lot of single vitamins, like A, E, etc. But before deciding on a B Complex, you need to know what form of B12 and folate you're looking for and whether you want things tipped toward providing more methyl groups or toward using some up. (e.g. adeno and hydroxy B12 use up a methyl group as the body converts these into methylB12 - which is does just fine if you don't have an MTHFR issue.)

We did a urine test using DMSA provocation - a metals chelator - thru Dr. M about 2 yrs ago in the middle of lyme treatment. DS was slightly high in mercury, DD was slightly high on lead. DS used DMSA for 2 mos. to chelate mercury and DD used EDTA for lead for about 3 mos. We didn't re-test - other things going on at the time and taking priority in the money dept. But their levels were so slightly elevated to begin with that it wasn't a priority to re-test. So when it came time to treat CBS, I felt pretty good that even if there were metals left, the body could handle it on its own.

You'd look at your son's CBS and SUOX status as the biggest indicator of sulfur tolerance.

Hope - do an archive search on ERMI testing - lots of discussion about it on the lyme forum about 2 yrs ago. It can be a real money suck. I got caught up in some of the panic and did take some steps but didn't do testing. I think if you're in a sick building, yes it can absolutely cause health issues and keep you from fighting chronic infection. But I also think you need to try to maintain balance. There is mold everywhere - inside and out. You cannot escape it entirely. You should absolutely take steps if you know you have a mold issue. But I just caution everyone to take a breath. You can drive yourself into a panic and spend lots of money and still not get well. You need to make sure it's the root of your problem or you'll be too broke to fix anything else. MDmom - you say your C4a tests were normal. Now, there's some debate about which labs produce reliable results - Shoemaker used to insist that only Jewish Hopsital? (in Colorado?) had a good test. But they were bought by Quest and now you have less control over where your test is run. But assuming you can rely on your labs, even tho your DD is HLA mold sensitive, it doesn't necessarily give you a smoking gun that this is your problem. I agree that after 18 mos of an IV port, you should be looking for why they're not making progress. And yes, it could be mold. But have you also looked into other things? Pyroluria was a huge roadblock for my DS - once we found that, he made huge gains. Have you discussed other hurdles with your LLMD?

We have all the mutations you list except MTHFR A1298C (we have C677T instead). But we don't have the exact same combo in one body, plus we have additional mutations on other genes. I started treating MTHFR before we ever did 23andMe (back when the 23andMe test was $500 and it wasn't in the budget). When I found out DD also had two CBS +/-, I didn't stop what I'd been doing for MTHFR. First, I copied Heartfixer http://www.heartfixer.com/AMRI-Nutrigenomics.htm into a word document and deleted the sections that didn't apply to that kid. Then I highlighted the advice it gave for each mutation we did have. That gave me my long term plan. Next, I stopped all the supps I was giving that were working against that kid's mutations. Gave that about a week. Then I just then treated CBS first out of all the other issues (while keeping our methylfolate/methylB12 the same as it's been for 10 months). Because we'd already checked heavy metals and fixed the gut, I didn't feel like we needed to wait for a really long time for CBS issues to resolve. After a few weeks, I took a circle approach. I started DD on molybdenum (Yasko sells moly drops so much easier to titer doses up or down - and they have no taste, so I put 2 drops in a medicine cup w/5ml of water) and some Yucca, tho I stopped the Yucca after reading it stimulates estrogen receptors (and we don't need more mood issues!). She was already taking Vitamin C and I added Vitamin E. I don't give carnitine because she's had seizures in the past and it can lower your seizure threshold. It's also used for hyperthyroidism and DD has subclinical signs of hypothyroidism, so carnitine seemed like a bad fit for her. I also stopped forcing her to eat protein at dinner. She now gets by with a few bite sized pieces of chicken or pork a few times/week. I let that settle for a few weeks. Then I moved on to heartfixer's recommendations for other mutations. I did not buy test strips to test DDs urine sulfites - some research says this won't really tell you what's going on anyway and it just felt too nutty. I've put my kids thru so many whacky things - making them pee into cups for 24 hrs, pooping into bowls for stool tests, spit tests, blood tests - I just wasn't up for having my hand pee'd on every day or even every week. Maybe I should have, but I'm just too tired of being neurotic. Every week, I added one supplement that was missing from our plan. Low dose, then moved on to the next supplement. As opposed to titering up on only one supplement, getting it to the "right" dose and then moving on to another thing. I figured it was better to add a little of everything that was needed first, and then see where we were at. We're still in a tweaking phase and I haven't pushed the fact that DD should really lighten up on dairy, even tho she's CBS. Trying to find balance to "should" and "must" - the kid needs to be able to indulge in some ice cream after all she's been thru. For me, the hardest thing was trying to find the balance between VDR, COMT, MAO and MTHFR - trying to figure out how far to lean toward or away from methyl groups. You'll probably run into the same thing - VDR +/+ gives you a lower than average dopamine level but COMT +/+ and MAO A + create high dopamine. So in the winter, the body may need Vitamin D and that would be especially true for your VDR Taq +/+. But then, the COMT +/+ and MAO A + are going to slow down how quickly that dopamine gets degraded. It will be a balancing act for sure. You may need to do some reading on Vitamin K - maybe by taking a Vit D3+K supplement, you can encourage the D to go toward bone and immune system assistance instead of dopamine production. My DS has COMT +/+ and MAO-A + and he's really been helped by using a B-Complex that's a bit high in niacin (50mg) and uses adenoB12, not methylB12. But he doesn't have MTHFR. So that lessens his need for methyl groups. In your case, you've got a jeckyl & hyde situation where COMT and MAO suggest less tolerance for methyl groups yet the MTHFR suggests a need for them (and maybe here, the VDR Taq works in your favor in terms of lowers the overmethylation issue). You'll probably have to dig up the old articles written by Pfieffer and Walsh and see if your kids fit into the overmethylator or undermethylator table. You may end up using smaller amounts of both methylB12 and adeno or hydroxy B12. Fun with science! But just to take little stress out the situation, remember that I've OD'd my kid on methylfolate and she survived. It generally only took a few days of something to know if I was on the right track and if I was wrong and stopped the thing that was de-railing us, things straightened out in a day or two. It wasn't like trying to turn a cruise ship around. Worst case, I wasted money on the wrong kind of B12 or other supplement. Wasn't the first time. I was taking to the executive director of an ADHD non-profit the other day and we traded kid stories. When I confessed to ODing my kid she said "You too?!" - and she did it with the help of doctors. It's always a best guess as we try to figure this out. Low and slow. And then when you get it figured out, they'll grow and change eating habits and you;ll get to figure out new doses all over again!

Yes, a good reminder at a good time!

Yes, I think you can figure it out. My kids are doing much better (fingers crossed). BTW - I never asked you about whether you've explored Pandas, since that wasn't your question. But since he goes periods of time without tics, you may want to rule out an active infection and also definitely get after that yeast. Yeast can cause tics and other behavioral issues.

Yay!! So happy for you!!! I hope it's a good omen for a great summer of no issues! Like you say, NAC is not good for those of us who can't handle sulfurs or have CBS mutations. I took it for a few months this winter for a chronic cough, since it's a great mucus thinner. But I slowly became depressed and had no idea why. My liver enzymes became elevated. So I stopped it and the depression went away and the liver enzymes went back to normal. So it's definitely not for everyone, but it sounds like it might be just what you guys needed! Fingers crossed for you!

We tested MTHFR through Quest and then did the 23andMe. Yes, it's just spit, no blood, no doctor's signature required. $99 for the first kit, $79 for additional kits if you order them at the same time. You should read a recent (last week) thread about privacy concerns just so you can make an informed decision. But it's been very helpful for me.

I'd say at least one. But don't panic. Nearly everyone has several mutations. I have 16, my DD has 14 and my son - the sickest one and the one prone to tics - has 13 - and that's just among the 31 mutations looked at in our particular reports. It isn't a matter of how many. More a matter of how severe and how easy or difficult it is to work around those mutations. Some play secondary roles, others play more major roles and they all effect each other. Knowing what those mutations are is really important, IMO. Just saying "he has methylation defects" is like saying "he has a nutritional deficiency". A deficiency in what?? Do you feed him more carrots or more bananas? I agree with your approach - supplementing to support the body in areas of weakness. But I think you need more information than you have before you can make an informed treatment plan. That's been my experience anyway, she who has overdosed her kids on the wrong stuff more that once!

D - trust me. It does get better. Sometimes I'd get so PO'd as the other old timers would get their kids off abx and dabble in that "normal" world we all used to live in. And I'd think "%#@*&! - when does it get to be my turn???? I've put up with this $#% just as long, spent at least as much money, logged at least as many miles traveling to the same docs, treated 4+ diseases, why do I get the "privilege" of having to dig deeper?" But if I had stopped at "pure Pandas" my kids would still have untreated lyme, pyroluria, and methylation issues that have far reaching impact on their lives. I'm not sure you're ever "done" with this stuff - it will be on my radar for years to come. But the journey you're on will give your daughter a life that wouldn't be possible if you didn't keep pushing for more. You're giving her an immeasurable gift. Did you see this? http://pandasnetwork.org/2013/06/my-son-the-pandas-survivor/ From ticcer to valedictorian... One way or another, we'll all get to the other side.

The problem with having a "methylation marker" is that there are nearly 3 dozens gene mutations that, under current thinking, play a role in methylation problems. Better methylation is not simply a matter of adding a B Complex or adding a methyl form of certain B vitamins. My daughter improved vastly with methyl B9 and needs to restrict B3 so she can increase her methyl groups. But my son needs the opposite - he needs the unmethylated form of B9 plus extra B3 to soak up extra methyl groups. Plus, as you've seen, the order in which you address issues matters. If you don't clear out the log jams in the right order, all you do is move the mess to a different point in the stream. So maybe your son does need additional serotonin but there may be something else getting in the way and it's not a matter of simply adding more into the system. Here is a good site that has links to the major contributors to the emerging field of methylation and epigenetics: http://sherleeholmes.com/2013/04/07/methylation-snps-testing-options-and-information-resources/ You can also search this forum for a lot of discussions on the topic. Personally, I've found testing with 23andMe to be very valuable in helping me find out what supplements were helping my kids and which were causing problems. My son gets tics when he's having trouble with detox but he also develops OCD-like tics when his zinc/copper ratio gets out of whack. He runs high on dopamine a lot of the time and one of his genes that degrades/lowers dopamine depends on the right amount of copper as a co-factor. At a minimum, I'd ask your doctor to test your son's MTHFR gene status before you settle on the right B complex. But I found 23andMe much more helpful. Plus, I'd go low and slow when adding supplements and trust your gut. Personally, I wouldn't be pushing any supplements that made tics worse without first understanding why.

My son cannot tolerate tindamax, even pulsing (we last tried it in Jan). I don't know if that means he still has cysts, but he's been off abx for 2 months and is holding steady. I could go back and do more cyst busting, but why? He may always have lyme - it may be impossible to ever get rid of all of it. If he's finally goten to a truce with it, where his body can keep it in check, I've gotten to a point I'm ok with that. I need to let go of the desire to have him squeaky clean of all infection. If he regresses, yes, I'll absolutely put him back on abx in a heart beat. But for now, we're at a good place. Twice in the past 6 months, I've tried things that set us back - tindamax and enhansa. I get responses assuring me it's a herx and to push through. That might be right (tho enhansa is an MAO-I and DS already has an inhibited MAO mutation, so I think that enhansa is just a bad fit for him). Maybe I'm doing the wrong thing by just stopping. But I'm so very tired, the family is so very tired, my son is so very tired, and we're so very broke...that I'm ok not rocking the boat again unless I need to. So for the GSE, I'd stop it for a week or two and see what happens. If it's all good ans she stays good, I'd put the GSE in back of the cupboard. If she gets good and then slips, you'll know it's a herx.

My son (10), who has been the sicker of the two kids, used to complain about all the pills. Twice, we've had to stop all supps for a week each time to do urine tests. He felt so bad at the end of the week that he now considers the supps as important as air. He now gets that he needs them. So when he complains (and I totally understand how it sucks for a kid to have to take so many pills), I tell him what each one is for, tell him which ones aren't negotiable and then let him decide if he wants so skip any of the remaining ones. Usually, he'll decide to skip one or two and then after all the others are taken, he'll shrug and say "what's two more" and pop those two in as well. For him, he just needs to feel like he has a small vote. My daughter, (8) maybe because she feels less sick and because the pills don't have a dramatic impact (she has a thyroid issue causing fatigue but no supps have resolved it thus far and labs don't justify thyroid meds at this point) - she balks more. If I give her a choice, she won't take any of them. So the approach I use with my son won;t work for her. Instead, I tell her that her health doesn't only effect her. It effects everyone else in the house too. That it may be her body, but it's our family and we get a vote too. When she moves out, she can make different choices. But as long as she's in "my house" (yes, I sense my mother laughing at that) she needs to play her part in making the family function. Sometimes, I'll let her negotiate away a pill - like a vitamin D where missing one dose won't make a huge difference. That at least gives her small comfort. Sometimes, I'll give her a window - ok, you don't have to take them right now, but they need to be in your body before lunch. It is far easier with younger ones. A 16 yo with a large weight gain and an even larger chip on her shoulder has got to be maddening. But if she doesn't take her meds, the family suffers the consequences, not just her alone. So that can't be an option. Instead, can you set up a set of consequences that impact her alone? Like, no meds = no internet/phone/ or some other thing she holds dear? Frame it not as a punishment but as a choice. She has a choice to not take abx but there's a natural consequence to that decision - a consequence that hurts. Then let her suffer that consequence. She's bound to test you to see if you mean it. Follow through. It can't be you pushing. It has to be her choosing. In the movie Silver Linings Playbook, Bradley Cooper refuses to take his meds for bipolar because he hates the way they make him feel. His parents plead but he won't do it. At one point, he goes into a manic episode that threatens to put him back in the psych hospital. The imminent punishment makes him compliant. Later, he falls in love with Jennifer Lawrence and doesn't want to screw it up. He realizes that he needs the meds if he's going to have the life he wants. I don't think he ever comes to love the fact that he needs them but he accepts them as a necessary evil. Somehow, your daughter has to be brought around to understanding that. There's a really good book about OCD called Talking Back to OCD by John March. He makes the point that the parent can't fight the OCD. Only the teen can do that. The parent's job is to be the coach. But the teen has to own the problem and the treatment. You may want to get the book and use it's message to help you find a similar approach to the med problem. It really helped me shift my perspective.