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Posts posted by LNN

  1. Wombat - I generally detect a positive change in 2-3 days after implementing a change and sticking with it. Likewise, I can detect a negative change within a day of eating a high sulfur diet (eg lots of garlic or sauerkraut for me). I'd be suspicious of test strips that consistently read zero day after day - you never weigh exactly the same one day from the next, so it feels like you should see some ups and downs. But I don't have any personal experience with the strips. From what you've posted, it seems that adding a small amount of methylfolate plus hydroxy or adenoB12 would be your next step, that yes you're ready. Based on how sensitive you seem to be, I'd suggest one drop (67mcg) of methylfolate every day or every other day along with 1000-3000 mcg of a sublingual B12. I've read in several places that only about 10% of B12 is absorbed if taken orally, so 1000mcg probably gets you about 100mcg into the bloodstream. Take it slow and have small doses of niacinamide (50-10mg) on hand in case you take too much or go too quickly.


    lbee - I don't know of any specific meaning behind high B6. I think having levels is good so that you don't over-supplement. But some ideas to consider - if you're taking B6 in any form other than P-5-P, it's possible you're not utilizing your B6 well. So you could try switching to P-5-P if you're using something else. Or it's possible you're not methylating well somewhere else in the cycle and you're seeing a bottleneck. You could try addressing her mutations and then re-measuring to see what changed.


    Sulfur is what's measured with the test strips. Ammonia levels are a blood test. I don't have a doctor who knows this stuff (it's my kids' doctor who helps me with them but he can't order tests for me). So I go by odor. If urine reminds you vaguely of a diaper pail, or even any sort of pungent odor, then ammonia may be an issue. If taking yucca or roselle (hibiscus sabdarifa) for a week makes that odor go away, it was probably ammonia.

  2. We did 1 IVIG with him in 2010. At that time, he was bucking the normal protocol and advocating for multiple high-dose IVIGs - generally every 8 weeks for roughly a year and then seeing where kids were at. The other clinicians were only doing one HD IVIG and I believe that remains the norm. It's what was used in the most recent Yale/NIMH research. I think it's one of those topics that you can find very strong opinions on for both sides.


    The reason we only did 1 treatment, despite Dr B's desire to do more, was that my son had a very severe response to it. It set off 10 weeks of a very bad time. In hindsight, I think it was because he had undiagnosed lyme at the time and by boosting his immune system so strongly and abruptly, we set off a large herxheimer response. It wasn't something we felt we could put our family through a second time and we ended up leaving Dr B for a lyme-literate MD who was able to restore my son's health without additional IVIGs.


    I initially felt a lot of pressure to do IVIG and felt I had an obligation to do everything within our financial means to help my son. This also included doing plasmapheresis 10 months prior to doing IVIG. Looking back 5 years later, I can say I shouldn't have equated the cost of treatment with being the "best" treatment. In the end, the things that got my son well were fairly low cost - combinations of antibiotics, fixing a zinc deficiency and adjusting his vitamins to match his body's individual needs (you'll find many, many posts from me on the subject of methylation, which is what I'm referring to).


    I'm not anti-IVIG. If we hadn't done it and had a horrible response, maybe we wouldn't have found the lyme. I know lots of parents who feel it's really helpful. But...it's not the only path to recovery and if you can't swing it financially, know that there are other equally effective ways to get there. You don't have to cash out your IRAs or college funds. And the argument for multiple IVIGs has two sides. Don't let yourself be pressured into a treatment if it doesn't make sense for your family.



    B Complex without folic acid or B12 - Seeking Health's B Minus http://www.seekinghealth.com/b-minus-100-vegetarian-capsules-seeking-health.html We've tried numerous other types, even ones from the same company, and this is the only one that works for her.



    I've been looking for just this kind of b complex but the niacin seems crazy high or is that a typo on the website??


    No, unfortunately, it is way high. Dr Lynch thinks niacin is so important, that he uses a lot of it. I'm not sure I agree but both my DD and DH, both with MTHFR, do well on it. They both treated MTHFR first, with methylfolate and adenoB12, and then added this B Complex later. So maybe once their methylation cycles were working better, the niacin was less of an issue. We used to get a B Complex from a compounding company called Vitaganic where you could create your own multivitamin. selecting each ingredient and dose you wanted them to add. But the site has been shut down.


    I also tried Seeking Health's Optimum Start, giving DH and DD only one capsule (instead of the 4 listed as one dose on the label). But they both got very cranky after a week on it and both got much happier again once I switched back to the B Minus. So it seems to agree with them. They do complain about an occasional "niacin flush" - once every few weeks. But a small price to pay when nothing else seems to work as well for them. If the niacin proved to be too much for your family, you could also use a bit more methylfolate/B12 to add back any methyl groups the higher niacin dose was sucking up. Just a thought.

  4. First, realize I'm just a mom, with no medical expertise other than personal experience. So this is just my opinion...but I'm not one who's big on eliminating whole swaths of food without a really good reason. Having a CBS mutation doesn't mean it's expressing. If your strips were 800 to start with, I'm not sure a drastic diet change was needed, especially as a vegetarian who needs sources of protein. Protein is vital for our bodies.


    In your situation, I think you'd be better off resuming your normal diet and maybe using an intermittent dose of Yucca (which is great for lowering ammonia but is estrogenic and shouldn't be taken for more than 3 months straight) or l-ornithine (with or without l-arginine). L-ornithine is used by hospitals to lower ammonia in cases of hyperammonium. It's the rate limiting amino acid in the urea cycle, meaning you'll only make as much urine as you have l-ornithine. l-ornithine uses ammonia to create urine. So more l-ornithine=less ammonia and more urine. A typical dose for my daughter is 500mg arginine/250 ornithine taken 1-3 times per day depending on her health and urine output.


    Given your diet restrictions (vegetarian) and your not so high starting sulfur levels, if I were you, I'd resume normal diet and take l-ornithine if your urine has a strong odor to it. (similar to the smell of a baby's diaper pail).


    As for the multi - I'd suspect that's behind the negative things you've seen. For starters, with MTHFR (if it's expressing) you need to avoid folic acid. My kids had to forgo the convenience of a multi-vitamin and instead take separate supplements for the things they need. It means more pills to swallow, but most multis contain things they can't tolerate. Instead, start out with a good B Complex that doesn't have any folic acid or folate or folinic acid in it. My daughter uses this:


    B Complex without folic acid or B12 - Seeking Health's B Minus http://www.seekinghealth.com/b-minus-100-vegetarian-capsules-seeking-health.html We've tried numerous other types, even ones from the same company, and this is the only one that works for her.


    B12 - She gets andenoB12 from this http://www.seekinghealth.com/adeno-b12-60-lozenges-seeking-health.html and


    Methylfolate from here http://www.holisticheal.com/methylmate-b-drops.html one drop = 67mcg of methylfolate. This lets you make small changes in doses until you find the right dose for you. If you later find out you need 400mcg or 800mcg, you can switch to tablets. But if you need 67mcg or some multiple, but not as high as the tablets, this product lets you dial in. My DD only needs 67mcg every other day.


    I'd ditch the multivitamin and the boron. I never saw detox effects - when we hit on the right things, my kids responded in good ways in a matter of 1-3 days. There wasn't a lot of iffy-ness. There were clear changes.


    To recap, if it were me,

    • Resume normal diet.
    • Stop multivitamin and boron.
    • Add 1 drop methylfolate every day plus one sublingual B12 for a week and see how you feel. Tweak dose of methylfolate up or down as needed. If you feel nothing from one drop, go to 2 drops/day. If you feel moody or upset on one drop per day, drop down to every other day. If you get manic or bipolar on any particular dose, take 50mg of niacin as an antidote.
    • Once you think you have your methylfolate/B12 doses balanced, then search for a B Complex that works for you. Make sure it does not include any folate.
    • Then worry about the other snps.

    Not everyone sees the amazing results I've seen from addressing methylation. But most parents who do see good things see them pretty quickly. They also see some bad things pretty quickly if it's the wrong dose, the wrong type of supp, etc. Be patient. Having bad responses isn't a bad thing - it tells you you're sensitive to small changes of what's going into your body, which is great, because it suggests that if you put the right balance of things into it, you might see good changes.

  5. How much copper is your daughter using? The usual 2mg, or less, more?


    By the way, this is what I have on the MTHFR side of things:

    MTHFR C677T rs1801133 AG +/-

    MTHFR A1298C rs1801131 TT -/-


    Does that constitute a MTHFR thing, or not - and if so, in what direction?


    My DD doesn't supplement with any copper. Her levels have always tested fine without it. My son sometimes supplements with copper when we remember, because he takes high doses of zinc for pyroluria and so we need to keep copper in balance. When we remember, he takes 2mg. But if he takes it with other supplements, he gets very nauseous. He needs to take it with food and away from other supps. So we tend to forget, because other supps get taken in the a.m. as part of our morning routine. Copper gets taken at dinner and often dinner isn't as structured as our mornings, so it slips. But supplementing should be based on zinc/coper balance and I realize that's hard for you with the needle phobia. Not sure how to advise you on that.


    The 2 MTHFR snps above are the ones to focus on. Not that the others are irrelevant, but no literature on them. C677T is said to affect the forward cycle - the changing of homocysteine into cycteine and ATP. A1298C is said to affect the BH4 cycle and the production of serotonin and dopamine and also gut issues. But that isn't our case. My DD has C677T and small doses of methylfolate get rid of her bipolar moods. So it clearly affects her neurotransmitters.(she takes 67mcg every other day, adults often use between 400-800mcg - use Yasko's liquid methylmate B from Holistic Health so you can tweak dosing more easily until you zero in). You might want to introduce hydroxyB12 sublingually as well.


    Having MTHFR C677T +/- does alter my advice above regarding how much niacinamide you might try. You may have less tolerance for higher doses of niacinamide. My DD (age 10) does better on doses under 50mg because niacinamide is a methyl user. As an undermethylator, she has fewer methyl donors to begin with. So we use less niacinamide with her than with my son, who has normal MTHFR. Start slow and low, then give it a week and adjust as needed.


    Again, only introduce one supplement or variable at a time. Best of luck!

  6. COMT and MAO both serve similar functions - they are the drain plugs for your body's puddles of fight/flight neurotransmitters. When you're threatened (or perceive a threat - real or otherwise) you generate/release higher levels of epinephrine (aka adrenaline), dopamine (a reward/reinforcing/motivating neurotransmitter) and serotonin. But you can't stay on high alert forever. So COMT and MAO are there to help your body return to a normal state of relative calm. They degrade the neurotransmitters and act like a drain that lowers the levels of these high alert messengers. If you have normal COMT and MAO, then you're one of those cool as a cucumber people in a crisis. If you have variants that make these genes run slower than normal, then you tend to stay jacked up longer than the people around you. You may "fall apart" during or after a crisis.


    Slow running COMT and/or MAO makes you prone to worry, anxiety, quick temper, and health problems associated with high adrenaline levels (like heart problems). An astounding number of prison inmates suffer from MAO mutations and their quick tempers and tendency to see things in terms of predatory threats may have something to do with their incarcerations. It's possible COMT may play a role in OCD but it's probably not the only gene involved.


    So what to do? Cognitive behavior therapy helps. So does taking supplements or consuming a diet rich in elements that help these two genes produce the enzymes that upregulate them or help them work a little faster/better. Niacin (Vitamin B3) helps produce more COMT enzymes and can have a calming effect on "over methylators" who likely have more adrenaline than they need. Niacinamide is even better as a supplement because niacin will cause a "flush" which is uncomfortable but niacinamide is flush-free. (However, the flush helps release histamine and it does open the capillaries, which is good for circulation, so if you can tolerate the flush, it's not without benefits).


    Vitamin D also plays a role in COMT, so re-read Heartfixer for more advice there, depending on your VDR status.


    Copper can upregulate MAO-A. So if you're MAO +, make sure your zinc/copper ratios are good. (too much copper can cause a host of issues, so it's about balance here). You'd want to avoid any medication that's an MAO-I (MAO inhibitor) including OTC cough and cold medicines. (they'll often carry a warning on the instructions saying do not take if you currently take an MAO-I). Curcumin/enhansa/tumeric is also an MAO-I, so avoid that as well.


    Being COMT and MAO +, you'll probably see nice changes by adding niacinamide (start with 50-100mg and go from there), balancing vitamin D intake, and making sure you have enough copper and avoiding foods/medications that are MAO-Is.

  7. Well, the three people in my family who have CBS issues don't have Pandas, so it's not like treating CBS helped with any Pandas symptoms for us. For us, it's been an overall improvement in feeling better, and possibly with longer term heart risks. I personally felt nor smelled any improvement from molybdenum, even after taking it for many many months. I still take it a few times a week because it's supposed to be good for me, but it's not in my daily routine any longer.


    I did feel a noticeable improvement from the Roselle after about 2-3 weeks. The Yucca worked more quickly - 1-2 days - but I use it only every few weeks wen my diet has tipped toward a lot of protein or sulfur and use the Roselle now on a regular basis.


    I'd love to say "if you see no improvement in 3 weeks, that's long enough". But it's more likely that if you do one thing (e.g. reduce sulfur foods) and see no change, then maybe it's that you haven't done enough. Maybe if minimal change, you'd need to take another step, add a second or third supplement, etc. It'll most likely be a cumulative result rather than any single thing being "the" answer.


    But...that's more true for CBS than the snps that directly influence neurotransmitters, like MTHFR, COMT and MAO-A. For these three, I saw improvements in my kids' moods within 1 week and then it took a few additional weeks to tweak dosing, but I knew I was on the right track. My DD needs a tiny dose of l-methylfolate to control her rapid mood swings. My DS needs extra niacin to help his anger due to COMT and MAO-A. Others have said they saw noticable changes with Vitamin D due to VDR Taq.

  8. First, understand that people, including the gurus, are only beginning to understand the best ways to use genetic info in advising individuals. Yasko's advice isn't without criticism and there's some research in PubMed that seems to suggest she's not 100% correct when it comes to CBS and ammonia. Heartfixer - tho I think it's an awesome road map, is 7 years old and a lot had been learned since then - in both research and in practical life. So take what's useful and what seems to apply in your own life, but don't take the Heartixer document as gospel.


    Second, while Yasko thinks CBS should be treated first, I don't think it means other snps should be totally ignored until your CBS benchmarks are 'perfect'. To begin with, do a reality check to see if your CBS variants are expressing. Having a variant isn't the same as having a variant that's expressing. Have you done any sulfur strips? Does your urine sometimes have an ammonia or strong smell? Do high sulfur foods bother you (e.g. wine or the foods listed in heartfixer), have you had your homocysteine, B12, folate or B6 levels checked?


    If you do think CBS is an issue for you, then implement some of the easier steps listed in heartfixer and see if you notice or measure any changes. For example, add molybdenum, reduce sulfur from your diet, lower (but IMO don't eliminate) protein and sulfurs if your current diet tends to run high in these things. If you want, add some of the supps mentioned. I've found Yucca to be very helpful but do be aware that it's estrogenic and will raise estrogen levels. It should not be taken continuously for more than 3 months and I personally don't think it should be given to a child or adolescent for any significant period of time. L-ornithine is also very effective at lowering ammonia and is used in ER's for this purpose. Ornithine is the rate-limiting amino acid in the urea (krebs) cycle and is something the body naturally consumes, so I think it's a better option. But it will make you pee more often (because it's a key amino acid in the production of urine). So if that becomes inconvenient, Roselle (hibiscus sabdarifa) is an herb that also lowers ammonia if you take it for a week or two. But don't feel you need to do or take everything listed and certainly not all at the beginning. Make one or two changes and see if it helps. Then make more changes as necessary/practical.


    Then consider addressing other troubling snps - like MTHFR, COMT, MAO, VDR Taq...these also affect your health and all of them affect each other. So you can't get one "perfect" and then tweak another and not have it also affect the first thing you just got "perfect". I personally think it's better to make noticeable improvements in say, CBS. Then address say, MTHFR, until you narrow down a pretty acceptable regimen there. Then move over to the next snp, then circle back and check in on your CBS ammonia and sulfur issues. I think Yasko et al talk about things in a linear fashion so that a confusing topic doesn't get even messier. But in reality, it's all interconnected. You can't tug on one string without making the others change too. So try to look at it as a spiral rather than a line.


    To your questions -

    1. there is no time frame. It depends on your diet, your other snps, your activity levels, your weight, your medications...again - I didn't take heartfixer as an absolute. It was more of a list of suggestions for me.


    2. Gluten - some people swear by GF and others find it way too difficult to consider. I'm in the second group. I think heartfixer errs on the side of caution and figures GF won't be bad for anyone. But not everyone has problem with gluten. And even people who feel better avoiding gluten might feel better because they've turned to organic or away from processed foods. It's not crystal clear that GF gives great results solely because it eliminates gluten. You can do a blood test for gluten antibodies to see if you may have a problem with it. Or you can just try it and see how you feel. But I don't think it's a necessity for everyone and it doesn't have anything to do with CBS specifically.


    3. see #1 but I generally give any experiment 2-3 weeks without changing any other variable to decide if something's working or not.


    4. Personally, I cut back a bit on protein but not drastically. I never had a high sulfur diet to begin with. I would try to change any high sulfur med to something that didn't have high sulfur. The supps I added for CBS (molybdenum, roselle, vitamin E for me, molybdenum, carnitine, ornithine/arginine, Vitamin E for DD) have become permanent daily supps. I think adding roselle for me, ornithine for DD were the two most important. But the changes we made were not severe and so they've just become our new normal. But if you needed to make more severe changes, then I'd say to reassess once you went thru one spiral and had addressed your more serious snps for 6-12 months and then see where your ammonia/sulfur levels were, how your urine odor had changed, how you felt, etc. It's always going to be a bit of a moving target and work in process.


    Hope this helps

  9. l-lysine, an OTC amino acid, got rid of my DD's EBV within a few weeks - saw improvement w/in a few days. Other treatments hadn't been effective. Can't answer your question on any contribution to Pandas symptoms, as DD isn't my Pandas child. My Pandas child doesn't get symptoms from viral tho I know some kids do.

  10. Unfortunately, the symptoms you list can be caused by a lot of things. But you know when a parent mentions some issues and you immediately want to tell them to look into Pands because some of the things they mention hit close ot home? That's what your post did for me - the nausea and loss of appetite, the fatigue and heat intolerance, the crankiness - my daughter had these, plus flu-like symptoms like sore throat, muscle pain and brain fog/inattention. (no pica)


    For her, it was mold. Now, we'd gone down the mold rabbit hole a few years ago when my son was struggling with lyme and wasn't improving. After 18 months of combo abx, our LLMD said "When people with lyme don't get better, I tell them to look for mold". It was April and the school year was almost over, so I focused on our home. We emptied the basement of damp boxes, unused items...we replaced carpets, we inspected every pipe, drain, the plumbing behind the showers, the attic, every place I could think of. Although I never found a smoking gun, my son improved greatly a few months later, so I always figured that something we'd gotten rid of was the culprit.


    This year, my daughter was in the same classroom that my son had been in 3 yrs ago. Last fall, she started missing school due to illness. After 20 absences, I finally put it down on a calendar and saw that she always went to school feeling ok on Monday and was sick by mid-week. Then she'd feel better over the weekend and the cycle would repeat. Prior to this, we'd tested thyroid, cortisol, tried dairy free, tested for viral infections - nothing helped. We finally did some of the blood work recommended by Dr Shoemaker (http://www.survivingmold.com/diagnosis/lab-tests ) and found that mold was the problem. Needless to say, the school was less than enthusiastic but that nightmare story is for another time. Once we dialed in on the right treatment, she turned the corner and her health has come back.


    The one thing that struck me is that you say IVIG helped some. 25% of the population has a genetic mutation (on a gene called HLA-DR) that means their immune systems don't produce antibodies against mold. So the mold the body is exposed to doesn't get flagged and eaten by macrophages. Instead, it just keeps recirculating in the body, creating endless inflammation. IVIG would give a body donor antigens that would get rid of that mold invader. But IVIG has a half-life of about 3 weeks. So if the mold exposure was on-going, the problem would resurface once the donor antigens disappeared. So it might be worth talking to your doctor about some of the Shoemaker tests, including HLA-DR, C4a, MSH and TGF Beta-1. Our tests were covered by insurance and done by Quest. Shoemaker does say the C4a should be done by Quest's Jewish National Laboratories subsidiary in Colorado, but still covered by insurance.


    As for the rage - agree with Worrieddadnmom - also check copper levels. Also, if your daughter has an MAO-A mutation, niacin can help with rages. My son takes 100mg niacinamide and it makes a big difference. (niacinamide doesn't cause skin flushing. regular niacin does).

  11. There are many genes that impact how our bodies make and use neurotransmitters and that's one reason some meds work for some and not for others. One (of I'm sure several) processes that the body goes thru to make neurotransmitters is DNA methylation. It's an interactive cycle of about 30 genes that occurs inside the mitochondria of every cell in your body. it's the essential process of making cell energy.


    Of the 30, there are a few that really play a big role in serotinin and dopamine - these genes are supposed to spin at a certain "normal" rate. When they spin more slowly than normal, they may not produce enough neurotransmitters to keep you feeling balanced. Some other genes spin too fast, using up the neurotransmitters and the raw ingredients too quickly, so you don't have enough "in stock". An SSRI slows down the speed at which neurons re-uptake (reabsorb) serotonin and leave you feeling a little more balanced. So they're not "evil". The biggest problem is that there's currently no way to know which SSRI may work for you and many patients find the process of building up over 6 weeks - and possibly tapering down for 6 weeks if it doesn't work - too frustrating. But, is it better than suicide?


    That said, you can do a test called 23andMe (there are other companies as well) that will tell you the status of these genes and if they're spinning too fast or slow. By adding certain raw ingredients - or avoiding certain foods that introduce the wrong ingredients - you can sometimes get the spin right better adjusted.


    For example, my daughter used to have rapid mood swings. She has a mutation on a gene called MTHFR that makes it hard for her to process vitamin B9 and make serotonin downstream. By giving her a special form of methyl-B9, her mood swings are a thing of the past. My son has a mutation on a gene called MAO-A which leads him to have too much epinephrine and dopamine and this leaves him angry and impulsive. Niacin (vitamin B3) helps the body make more MAO-A enzymes and this helps him use up that excess dopamine/epinephrine more quickly - it mellows him out. I overslept this morning and my husband had the task of getting my son's morning vitamins together. He was't too sure of himself, so my son said "Dad, forget everything else. But find that pill that keeps me calm". Copper also slows down the spin rate of MAO-A


    MAO-A is also involved in depression. You may have heard of MAO-I's - a class of antidepressants. These work by slowing down the spinning so that the body doesn't use up it's neurotransmitters too quickly. MAO-I's lift depression by keeping more feel good chemicals in the system, in a different way than SSRIs but the same concept.


    But the thing is, because my son has an MAO mutation that runs slow, taking an MAO-I would be really bad for him, because it would slow things down even more and leave him flooded with epinephrine/dopamine and raise his aggression/fight response. My daughter's MTHFR mutation means an SSRI would probably work well for her. So knowing the status of their methylation genes has enabled me to give them vitamins and minerals and amino acids that help their bodies achieve a better, more "normal" balance. But what's good for one would be bad for the other. Until we did the testing, we were just throwing things at the wall and seeing what stuck. So if you and your son feeling so strongly against meds, this would be an alternative to consider.


    However, depression is something to take seriously. You may want to talk to your son about giving an SSRI a try until you both have a chance to do some homework. Or, try adjusting his diet toward foods that are high in tryptophan, which can raise serotonin. SAMe and 5-HTP are also supplements that help some people - but again, genetics is what determines whether these supps help longer term. Counseling is also very important. IMO, the person insisting on a psych eval is just punting the ball down the field in a CYA sort of way. I second the suggestion to go to IOCDF's site to see if there's a therapist in your area who might be able to help with a shoulder to lean on. www.ocfoundation.org

  12. Doctors do not recommend giving children aspirin because of the risk of Reye's syndrome. Reye's syndrome has shown up in children who have taken aspirin when battling an infection. It is a disease that can affect the brain (causing swelling, seizures, and coma), the liver (deterioration), and blood-clotting issues.


    But if your DD is 150 lbs, then you should check with your doctor on whether asprin is appropriate for her. I'm not trying to give medical advice.


    Ibuprofen and advil are fine for kids if given at the correct dosage for your child's body weight. Pseudophedrine is basically "speed" and is no longer sold OTC because teens were using it to make a home-grown version of speed. So now it's kept behind the pharmacy counter and it's sale is closely monitored/restricted. I can understand why it kept your DD from zoning out but it's probably a good thing you don't use it anymore. Even for people who have no autoimmune issues, taking any NSAID multiple times/day long term would put a strain on the liver. I'm glad to hear her liver and thyroid have returned to normal.


    As for methylation, when I use the term, I'm talking about individualized methylation, using specific supplements based on your genetics. Everyone's body methylates - it's a process that occurs in every cell in your body. But since decoding the human genome and since the affordable availability of testing your own genetics, a new field called epigenetics has emerged. It looks at your individual genetic issues and uses medications or supplements or diet to work around those individual roadblocks. I've used a few of the supplements you've listed, but if you're using them without knowing your DD's genetics, then it's not what I'm refering to when I talk about the topic. For example, I tried curcumin for my kids and it made my son rage - maybe because curcumin inhibits the MAO-A gene and my son's MAO-A gene is already impaired. MAO-A regulates how quickly your body degrades epinephrine and dopamine. So inhibiting that process further left him with too much of these neurotransmitters in his system, which made him angry. Curcumin was a no go for my DD as well, but probably because it's high is sulfur and due to a variation in her CBS gene, she struggles with breaking down sulfurs. So it's their genetics that drive my decisions to use or not use a supplement. That's what I'm talking about when I talk about using methylation. If you're going to pursue methylation strategies, then I'd recommend using one of the testing companies (e.g. 23andMe) to guide your and your doctor's decisions.

  13. In the US, the cost is $99 for the first test, $79 for a second, third kit if ordered at the same time. The price oversees may be different. The site is https://www.23andme.com/


    Will it be helpful? Depend on if the test reveals few or many issues. The test itself will give you 990,000 data points of raw data. As new research comes out on any disease, you can always go back to your raw data to see if you have a mutation on the part of the gene that the research examined. In terms of immediate practicality, there are now several sites that will run thru your raw data and give you an analysis of specific gene status. The most basic - and free except for a requested $10 donation - is www.geneticgenie.org. It looks at the genes involved in methylation and at the most common genes involved in detox. In that regard, it will help you know how your liver pathways process certain medications. If a pathway runs faster or slower than "normal" and you're taking a med that is processed thru that pathway, your doctor could increase or decrease your dosage based on the relative "speed" of your pathway. I'd think this would be helpful if you're considering a psychotropic drug where dosages are general and then you need to spend time increasing or decreasing to find your sweet spot - a process I'd imagine is very frustrating as you'd be playing with your moods. There's also www.livewello.com - I'm not sure of the cost but it's affordable.


    Do understand the privacy policies and securities of any website you use and be comfortable with it. I know genetic genie says it immediately deletes your data but I have no way of confirming this. I know livewello retains your data - I don't know whether they promise to secure it or leave themselves the option of sharing your data for research. It's something to research.


    As for methylation - 23andMe gives you the data to assess the 30+ genes involved in methylation, which plays a significant role in neurotransmitter production. You then use an app to give you a summary of your raw data. I've outlined the steps to do this in a thread (#18) pinned under "helpful threads" at the top of the forum page. There's als a link to a document that helps you interpret that data and understand what supplements help or hinder specific gene expressions.


    For my family, it's been incredibly helpful. I was using NAC for a cough and couldn't understand why I was depressed. Then I had a routine physical that showed my liver enzymes were very elevated. I stopped the NAC and my depression lifted and my liver panel returned to normal. I later found I have a mutation on my CBS gene, which means I can't handle sulfur drugs well (NAC, milk thistle, alpha lipoic acid, tumeric, quercetin and glutathione are all high in sulfur) and I have a problem breaking down ammonia. So I now take and avoid certain supplements and foods based on that finding. My son has mutations that make him quick to anger and we've been able to tweak doses of certain vitamins to make a big difference in his temper. My daughter had bipolar mood swings that are gone now that she takes a methyl form of B9. It took the guess work out of things. I'd read an article that xyz was great for a certain problem but knowing my genes lets me know whether I'd have this "great" response or if I'd be one of those people that wouldn't do well - before I actually wasted money on a bottle of this great supplement.


    However, I've also helped a few friends who ended up not having many mutations in their methylation cycle and we weren't able to make much headway in terms of OCD, anxiety, etc. The source of their roadblocks was somewhere outside the methylation cycle. But...they also ended up with raw data about many other phsyical processes - they could explore heart disease, alzheimer's, cancers...so I don't think it was a waste of money. It just didn't give them the same AHA that my family got in terms of mental health.


    All this said, compared to the expense of wasted supplements that didn't work, months/years of dealing with emotinal distress, being able to know how your liver processes various things...IMO, it's well worth it.

  14. Inositol flared it for us as did prednisone but tylenol or aspirin helped. Can someone tell me more about herxing?

    PLEASE do not use asprin with a child. Tylenol should also be avoided because tylenol depletes glutathione - the body's master antioxidant/toxin remover. Ibuprofen (Motrin) is what most Pandas parents use to help with inflammation and it can bring significant relief. But only ibuprofen.


    You can wikipedia "Herxheimer" for the specific explanation of a herx. It's generally used as slang in the lyme and PANS world to reflect a "getting worse before you get better" situation where you start a treatment that sort of works "too well" and the die off toxins from the bacteria. virus, fungus or parasite make you feel worse than beofre you started the treatment. So you'll hear the mantra "detox, detox, detox" which means - add supplements, strategies to support the body while it herxes so you can get over the hump and start to feel better w/o having to stop treatment,


    Detox can include supplements like milk thistle, n-acetylcysteine (NAC), alpha lipoic acid, glutathione, epsom salt baths - but all of these are high in sulfur and people who have mutations on a gene called CBS can't handle the sulfur. Instead of detoxing, these things overwhelm a CBS+ person's garbage elimination pathway (called the transsulfuration pathway). So for people with CBS+ issues, the mantra instead becomes "anti-inflammatory, anti-inflammatory, anti-inflammatory".


    You find out if you have CBS issues and other genetic issues by doing a spit test called 23andMe and using methylation strategies to work around your road blocks. That's why some of us have seen incredible results from changing supplements based on methylation info. Others don't see the same degree of miracle, but when you're searching for ways to help your child and other things haven't worked, it's a good place to look for clues.

  15. Here are a few easy reads on methylation - http://www.easytolovebut.com/?p=2782 and http://autismnti.com/images/Website-_Yasko_Education.pdf

    Take it slow and it eventually starts to make sense.


    The first step is ordering a 23andMe kit (www.23andMe.com) for $99 and have her spit into a tube. A few weeks later, you'll have her genetic info and can start to figure out what supplements might help her and which ones would add to her struggles. As Rowing Mom says, I'm a bit of a methylation fanatic. It maks a night and day difference for my kids moods and has kept them off of medications. I'm not on the forum often anymore but PM me and I'll get an email of you have questions.


    Rowing mom - I thought you were kicking your forum habit?! I'll send you a PM this afternoon so we can catch up :)

  16. My son's lyme made him rage. My daughter's rage/mood swings came from a problem with methylation. Methylation is a process every cell in your body uses as a factory to convert raw ingredients (vitamins/minerals/amino acids) into energy and more importantly, neurotransmitters. When a glitch in the DNA prevents your methylation cycle from running smoothly, it can create mood issues. There are two kinds of problems - overmethylation and undermethylation. For overmethylators, niacin (vitamin B3) hels with rages. For undermethylators, the methyl form of vitamin B9 (methylfolate) helps. If you go to the pinned Helpful Threads at the home page of the Pandas forum, thread #18 goes thru the testing you can use to explore methylation and lists some helpful articles.


    Illness can also hinder methylation, since the body needs to divert nutrients to the immune system and away from neurotransmitter production if raw materials are insufficient to make both.

  17. I can only give you my own experience with IVIG while having lyme. My son had undiagnosed lyme and had 1 high dose IVIG. It produced a horrible, 10 week herx response (herxheimer response = a worsening of symptoms due to toxins released by die-off from spirochette bacteria like lyme, syphillis et al). Lyme had supressed his immune system for so long that when we dumped the antibodies of thousands of healthy donors into his body, the slaughter of the lyme was far greater than what his body could eliminate/detox. He ended up overwhelmed with both toxic die-off and an autoimmune response and incredible inflammation. It was one of the worst times we ever endured.


    So if your DD isn't strong (doesn't sound like she is), you may be better off going more slowly. I know you already have more than enough infections to contend with, but when my son had been battling Pandas and lyme for several years and still wasn't getting/staying better, our LLMD said "when people have been with me and still aren't responding, I tell them to look for mold". Sure enough, we now know, years later, there was mold in his classrooms. When he moved out of that environment, he made progress in leaps and bounds. A year later, he was off all antibiotics (after having been on as many as 4 at a time) and after plasmapheresis, IVIG, T&A, steroids - had all failed to get him well.


    We removed the mold problem, which allowed the immune system to fight side by side with the antibiotics, and he got well. He's been off all antibiotics for 2 yrs, and he's gone from barely passing each grade to straight A's. His 1st grade teacher told me she thought he had autism. His 3rd grade testing said he had an IQ of 93. His 5th grade testing said he had an IQ of 112 (after being away from mold for a year). In 7th grade, he's high honors and is described as "above average-superior" compared to his peers. Yes, partly I'm bragging because I always felt like my real son was buried alive in an avalanche of illness and it feels so good to be on the other side, finally. But I also say it to tell you to not give up on the child you know is in there. It may bring you on a journey you never ever expected, but the answers are out there.

  18. See post #18 under helpful threads for Pandas http://latitudes.org/forums/index.php?showtopic=3928&page=2


    I wrote it before Livewello even existed, but the link the the Heartfixer doc is still my "go to" document for guidance on what to take or avoid for your unique results. I'm not on the forum very often anymore but PM me if you have questions you think I can help with. I'm only up to speed on the genes that affect my family but will share whatever links I have.


  19. dasu - if you have sulfur sensitivities, garlic is very high in sulfur and Enhansa is also sulfur based.


    Jennifer - we can't use sulfurs. Resveratrol is supposed to help but it's expensive and I was never able to give enough to see a difference. Rowingmom may have better input/experience. Motrin is our go-to and DS uses Primrose but he has pyroluria, so Primrose is recommended for this.

  20. Given she's MTHFR +/+, she should be able to tolerate some methyl donors, even with COMT, tho maybe less than other people.


    Most likely, it's her CBS +/- and MAO that's behind her struggle with tumeric/Enhansa. Tumeric is high sulfur, hard for people with CBS+ to handle. Tumeric is also an MAO inhibitor, which is already inhibited by her MAO +/+ status. I have one kid who's MAO+ and another who'c CBS+ and neither can tolerate Enhansa. It makes them angry, irritiable, moody and just plain unpleasant. Within a day of stopping it, their moods stabilized.


    She should also not take NAC. NAC makes my CBS+ kid very, very moody and it made me (also CBS+) very depressed and also seriously elevated my liver panel. I stopped the NAC and my AST/ALT returned to normal and my depression lifted.


    I'd also be watchful of the Nasonex, not b/c of genetics but because long term, I think it may not be good for the nasal tissue. But that's personal experience, not research based.


    As for the nausea, her MTHFR A1298C could be be behind this. Yasko's book talks a bit about it http://www.dramyyasko.com/wp-content/files_flutter/1327512160_9_1_1_8_pdf_02_file.pdf For constipation, consider supplementing magnesium (1-2 200mg capsules daily - we do one in a.m. and one in p.m.). FWIW, mold has been a huge source of nausea for DD - took a long time and process of elimination to get to the bottom of things.

  21. Dasu - in this link (post #18) you'll find some documents that may help you. http://latitudes.org/forums/index.php?showtopic=3928&page=2

    I really recommend the heartfixer doc.

    Generally, you only want to address one gene at a time, so you can tell what's helping and what's not. Yasko says to start with CBS, and I'd follow that by addressing MTHFR and then MAO in terms of mood and behavior issues.


    For CBS probably need to avoid NAC and maybe curcumin/tumeric (Enhansa), and Alpha lipoic acid (because of sulfur). You can also introduce molybdenum to help break down the ammonia from CBS deficiencies.


    For MTHFR, you generally add methylfolate and some form of B12 other than cyanocobalmin. methylfolate and B12 are the only two supplements you generally want to start at the same time, because they're co-factors and one doesn't work well without the other. I'd start at a very low dose of methylfolate - my DD does best on only 67 MICROgrams (mcg) - higher than that and she gets very rapid mood swings with lots of anger. Other kids do better on something closer to 400mcg and a few need higher. So start low and slow. The only supplement I've found in very low doses is Holistic Health's Methylmate B (1 drop = 67mcg). http://www.holisticheal.com/methylmate-b-nutritional-supplement.html


    Now, for B12, because you also have MAO issues, you probably don't want to use methylB12. Instead try hydroxyB12 or adenoB12. Perque makes a hydroxyB12 in 2000mcg and Seekng Health makes an affordable adenoB12 in 3000mcg. Don't let the high dose fool you. B12 that's swallowed hardly gets thru the stomach. Sublinguals dissolved under the tongue - maybe 10% gets absorbed. So a 2000 mcg dose gets you about 200mcg into your system. B-12 shots are really the only way to get high doses into the body.


    The only way I found to find the right dosing of methylfolate and B12 was to build up and then eventually cross the line into "too much" and then back down to the point just before ###### broke loose. But for that period of time when you cross the line, you can have a small dose of niacin (B3) on hand and w/in an hour, it'll suck up excess methyl donors and restore some calm. You can use either niacinamide or niacin. It's much easier to find small doses of niacin (I could only find niacinamide in 500mg doses, which was higher than I wanted - I use 50mg as an antidote). But if you use niacin, realize you may get a niacin flush for 20min after using it. It's harmless but a little uncomfortable.


    Then move on to VDR and COMT. Heartfoxer will help with these.


    Good luck!

  22. My DS took one dose of Tamiflu a few years ago when H1N1 was first going around. It gave him a weird out-of-body eperience (as best an 8 yr old can describe it) and he developed a leg movement that looked like tardive dyskinesia. We stopped after the first dose and it went away within the day.


    It's not widely reported, but when it was first used in Japan for bird flu, there were several news stories of people committing suicide or having serious psych side effects. Google - I can't recall the details.

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