LNN
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I was searching for something else and came across this doctor, who mentions treating pandas. Anyone have any experience? I pass it along FWIW for anyone in that area http://bambini-peds.com/Home_Page_A9IC.html
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Have you had a comprehensive metabolic panel done? Potassium, sodium. choline levels all affect the sense of urgency and electrical impulses.
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tics worse after low dose IVIG
LNN replied to anonymous0121's topic in PANS / PANDAS (Lyme included)
My son got way worse from IVIG - tics, rages, OCD... in his case, he had undiagnosed lyme and the HD IVIG response was probably a really bad herx. But my son also tics when his body can't get rid of toxins quickly enough and/or when he has a leaky gut, so that the toxins re-enter his blood stream. Detox, diet, gut support (glutamine, digestive enzymes, nystatin, fiber and daily BMs) are helping. I see tics as the canary in the coal mine. They're a symptom that something's amiss. If IVIG strengthened his immune system, it could be he's killing something and the tics are a result of the war within. Is he on abx? Have you explored detox and/or gut health or yeast? There's no single answer, unfortunately. -
My DD (the one w/o Pandas but w/methylation issues) battled fatigue over the years. Here are the things we dealt with: Epstein Barr Virus (precursor to mono). Left her only able to attend school part-time for 3 months. Finally effectively treated with l-lysine. B12 deficiency - finally resolved with sublingual methylB12 Trouble falling asleep (taking 2 hrs ea night). (had fatigue/lethargy all day) Finally resolved by making sure she drank lots of water. Sounds nuts, but dehydration was causing all sorts of imbalances. When hydrated, she's back to falling asleep w/in 15-30 min. When she doesn't drink a lot, we're back to 2 hrs. She also had adrenal fatigue caused by hating last year's teacher (who was truly awful) and feeling constant stress. (cortisol test showed abnormal levels in the evening). That's improved simply with the healing power of time. Not saying any of these are your smoking gun. Just trying to give a few ideas to explore.
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At the risk that you may all think me a zealot.....
LNN replied to qannie47's topic in PANS / PANDAS (Lyme included)
qannie - well said! In the worst days, my son would have a pity party for himself and I'd remind him of the girl in his school who's been in a wheelchair her whole life and I asked him if he thought she'd trade places with him. No matter what our personal burdens are, there are always people with heavier ones. Millions of people around the world would roll their eyes at the things we struggle with. Missed school? Had to miss work? Savings depleted on medical care? At least we live in a country with great (if flawed) and free education, at least we have jobs, at least we had savings to begin with...It's so easy to focus on what we've lost yet so easy to dismiss what we had and still have. My heat's warming my house in a snow storm as I write. There are plenty of people in a 25 miles radius of me who can't say that. My son has come out on the other side and is indeed far more resilient and wiser than his peers. He has a friend whose dad isnt' in the picture and whose bff was killed by a drunk driver. My dd's bff found her dad's body after he'd committed suicide a few months after her 7th birthday. Sure OCD and tics suck. But my kids are far from the only ones in our little town who've known loss and hardship. We tend to forget - but by sharing on this forum, we have a way forward, a way to get our kids well and to teach them valuable lessons along the way. We as parents are forever changed, and if we chose, it makes us better people. Thanks for the "zealous" reminder, especially as the holidays approach and we all get a little more reflective. Today, I'm thankful for: the coping tools ERP has given my kids to face life's challenges, for my awesome LLMD, for my supportive DH, for Sheila for creating this forum, which quite literally helped me heal my kids, and most of all - for my quirky, challenging, amazing kids, who make me realize every day that every day with them - even the hard ones - are a gift. Hey, I suddenly feel rich! -
It's a little sad Dr K would say "it's all Pandas". He continues to dismiss the idea of other infections and I don't understand why. Maybe his patient base is self-selecting and those who have other infections end up leaving his practice, so he only sees strep cases. IDK. But from my experiences personally and on this forum, it is absolutely not "all Pandas" Murphy may may right in terms of your son's situation. She knows that you can't rely on titers and that strep infections can be missed. But that's different than saying "it's all Pandas".
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Nystatin for yeast is this a problem for pandas?
LNN replied to anonymous0121's topic in PANS / PANDAS (Lyme included)
I found this post from an autism forum that may help: "Nystatin is not derived from strep strain. It is derived from streptomycete called streptomyces noursei which is a fungus itself. The strep strain that everybody is worried about is Streptococcus which is bacterial in origin. People see the strep part in the name and assume that nystatin is derived from streptococcus which is not true." http://www.autismweb.com/forum/viewtopic.php?f=4&t=26979 If you're seeing rages from diflucan, it could be from die off of a systemic yeast infection or it could be for some other reason. My son did diflucan in Sept-Oct and while it helped with some symptoms (stopped his OCD within days), it increased his tics. We never seemed to get past "herxing" symptoms. So we switched to nystatin in Nov and that does seem gentler. Tics have reduced but not gone away. I'm now thinking he has leaky gut - that yeast may be under control, but toxins from normal digestion and diet are seeping into his system due to inflammed/damaged gut lining. Gluten-free or even gluten-reduced diet proved too much for us. We just coudn't do it. So I'm now searching for less ideal options to heal the gut. Using glutamine and will probably try digestive enzymes this week. If I were you, I'd give the nystatin a try. It's been a better fit for my DS and it's less harsh on the liver. -
Not sure the methylB12 in this product would be very effective. Most B12 swallowed doesn't survive the gut. When DD refused to do a sublingual, I dissolved it in a cup of water and she'd drink it. She tested B12 deficient doing it this way. Finally got her to take it sublingually and her complaints of fatigue went away (haven't re-tested the B12 levels yet). But even sublingually, supposedly only 10% actually gets absorbed. So most of the B12 in the Thorne may not become available. That in mind, it's an expensive way to get some methylfolate and P5P. Solgar has metafolin (methylfolate) in 400mcg and 800mcg tablets for a whole lot less http://www.amazon.com/Solgar-Folate-400-Mcg-Metafolin/dp/B001LQY9ZO/ref=sr_1_1?s=hpc&ie=UTF8&qid=1386508925&sr=1-1&keywords=solgar+metafolin+400 and you can get P5P pretty inexpensively http://www.amazon.com/P-5-P-Pyridoxal-5-Phosphate-25-60-Caps/dp/B004EK2QMW/ref=sr_1_7?s=hpc&ie=UTF8&qid=1386509209&sr=1-7&keywords=p-5-p. Then use a sublingual methylB12, which is how my DH gets his "fix". For lower doses of methylfolate, you can use the Methylmate B drops from Holistic Health and then take a sublingual methylB12, which is how we do it for DD. I know a combo product is attractive from a pill load perspective, but B12 that's swallowed is probably a waste. At least that's been my experience and what I've been told and read.
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ACN (the host of this site) also has a booklet on Pandas that may help. http://latitudes.org/store/should-you-consider-pandas-ebook/ and you might find some helpful articles on the ACN general website http://latitudes.org/ Yes, re-test after the amox is done. Swabbing everyone tests to see if anyone in the family is a carrier (someone who has strep w/o outward symptoms). My DS went on a rollercoaster of treatment early on with amox and augmentin. He'd get symptoms, go on abx, symptoms would resolve, our script would end, symptoms would re-start, he'd go back on abx, symptoms would decrease, abx would end, symptoms would come back.... But after a few rounds of abx, the swabs came back negative. Could be b/c he stopped copperating with the swabs and they didn't get a good sample, or it could be b/c the strep had colonized in the crypts of his tonsils away from where the swab reached. In any event, after 10 months of this up/down nonsense, he had a T&A (tonsil/adenoid removal) and that put an end to this cycle. For addressing behavior, there are two behavioral therapies that help with coping tools -CBT (cognitive behavior therapy) and ERP (exposure/ritual prevention specifically for OCD). If you start a new discussion with her behaviors, some resident ERP experts may be able to suggest ideas. In general, CBT and ERP aren't effective at stopping the behaviors at the peak of a Pandas episode, but they do give you a common vocabulary and will help your daughter understand what's happening. Then, as the flare subsides, the CBT abd ERP tools help resolve the behaviors faster and lessen the chances the behaviors will become habits. Two books appropriate for her age are Tiger, Tiger Is it True by Byron Katie (talks about how sometimes thoughts don't match reality and you need to use real facts to boss back the worry thoughts) and What to Do When Your Brain Gets Stuck by Dawn Huebner. What to do When you Worry Too Much (also by Huebner) also helps with anxiety.
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I'm sorry about the remaining lyme, but so happy to hear about the cancer!!! The reason I suggested stopping the Sacc B and then waiting a few days before adding in a different probiotic was to gauge any improvement from stopping the Sacc B. If you stop one but start another the same day, you won't be able to isolate any changes directly to the Sacc B. But if you feel you can't go that long w/o probiotics, then Culturelle is probably fine. Yes, glutamine is totally different than glutathione. Glutamine is an amino acid. It's used in the body building world, as it helps reduce muscle pain caused by heavy workouts. So if DD is having muscle pain as a symptom of her yeast, glutamine should help. But I suggested it mostly for its role in replenishing the mucus lining in the gut. In the best case, I'd hope to see an improvement in her worst symptoms over the coming week. But you probably won't see resolution for a month or more. Yeast is really, really hard to beat. And dont' forget that if she starts starving the yeast with diet changes and stays on the diflucan and/or nystatin, you may see a herx-like response. She may get quite PMS-y and you'll be able to tell from her cravings if you're having an impact. If cravings get bad but then decrease, that's a good sign. If two weeks from now, you've stopped Sacc B, added CP-1 and glutamine and molybdenum, changed diet and still seem to be in the same or worse place, then talk to the doctor about stopping the diflucan for a time. My DS struggled with diflucan - it seemed to keep things in perpetual die-off mode. His tics got bad. Nystatin is much gentler b/c it stays in the gut only, doesn't travel throughout the body. But DS still has tics on the nystatin, which makes me think he's got leaky gut. As I said, diet changes have been really, really hard to make, so we're probably going to be working on this for awhile. (DS is not on abx, so at least we don't have that constant insult setting us back).
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I'd probably stop the Sacc B entirely for 4-7 days first. Then introduce 2 CP-1 capsules, best taken when stomach acids are low (eg an hr before eating, at bedtime, etc). You could start the molybdenum any time -http://www.amazon.com/Solgar-Chelated-Molybdenum-Tablets-Count/dp/B00ED3WOGS/ref=sr_1_1?s=hpc&ie=UTF8&qid=1386367196&sr=1-1&keywords=solgar+molybdenum RDA is 45mcg/day. So I try to use supps that are closer to this target. Solgar's and Holistic Health's are the lowest I've found. Solgar is 150mcg. So just use one/day. If you end up switching to something higher, be aware too much molybdenum can cause copper deficiency. We're using 2-3 capsules of glutamine/day, each capsule =500mg. Seems to be helping a bit. How's your own health, Momaine? Better I hope!
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Sacc Boullardi isn't the most beneficial gut bacteria you can have. It's still a fungus. It makes my son very angry and very Pandas-y. I know some here do fine on it, but I personally hate the stuff. I'd ditch the Sacc B before ditching the diflucan and nystatin. That alone could be a major part of her problem. Try switching to a probiotic that has high bifido and lacto strains. CP-1 comes highly recommended for yeast and we've been using it for a month. Have to say I like it a lot. http://www.customprobiotics.com/custom-probiotics-adult-formula-cp-1.htm Bifido strains are what's found in mother's milk. It's the first type of bacteria that goes into a baby's GI biome. My LLMD feels Sacc B is the stuff that thrives when the good stuff is wiped out by abx. The other thing is that if you have leaky gut, the nystatin could be killing stuff and the toxins could be leaking into the blood stream. Same with the diflucan, which is killing yeast systemically, not just in the gut. You could have a detox/herx on your hands, rather than the meds not doing their job. On top of that, you're adding in Sacc B so it's like bailing out the boat but having a running hose putting the water right back in. Try stopping the Sacc B for a time, switching to CP-1, Theralac or Kirkman's Bifido product, and eliminating as much gluten and sugar as you can (I tried but totally failed - so hats off to those who can do this). The other thing you can try is glutamine supplements, which help repair the mucus of the GI tract lining. If you've got yeast or other irritant boring into the lining, causing inflammation, you'll have leaky gut issues on top of the yeast problems. The toxins the dying yeast release (aldehyde and ammonia), will bleed back into the body. Molybdemun supplements can help with the detox - molybdenum breaks down ammonia and aldehyde. Solgar makes a 150mg molybdenum chelate that seems like a balanced dosage.
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We did 4 yrs of combo abx (Pandas/lyme). We've been off them since April of this year (knock wood). Here are the issues I had to deal with: 1. Yeast - this was a periodic problem. Garlic supplements helped sometimes. Sacc. Boulardis made things far worse for my son. (it helps some people, it disagrees with others). We shoot for 50billion CFUs with high bifido and lacto blends (Truflora, Kirikman Bifido and CP-1 are my favorites). Nystatin and diflucan were needed sometimes. Molybdenum helps the body break down the ammonia and adlehyde emitted by yeast. 2. Gut inflammation - from yeast or from abx being too harsh - have tried many supplements (Betain HCL, digestive enzymes). Am seeing positive results from 2x/day glutamine, which improves the mucus lining of the gut. (NAC is a mucus thinner, so just be aware you may need something to counterbalance if you stay with the NAC. Also watch for mood issues - some do great on NAC, others cant handle the high sulfur content). My hats off to you for all the dietary changes you've been able to make! You're a better/braver soul than me! I tried and couldn't do it 3. Liver - processing abx and diflucan and toxins are all hard on the liver. Make sure you get periodic liver panels - we did every 3-4 months. Milk thistle can help with liver detox (provided you aren't allergic to ragweed - MT is from the same family - and provided you can handle suflurs). SAMe can help so long as you're not an overmethylator. 4. Knowing when to stop - despite the risks, I always took comfort from long term abx. It was like having a safety net during the winter months. I hold my breath as we head into winter this year. But like Ariel, we occasionally tried to stop. The third time was the charm. There may come a time when the risks/gut harm outweighs the benefits. So once in awhile, it's good to re-evaluate. But probably during the summer, not now. Long term abx are not without risk. But so is on-going inflammation. Spend this time supporting the body like you're doing, letting healing do its thing. You'll know when it's time to reassess.
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No. The report is simply a color coded list of 30+ gene snps = green -/- means no mutation, yellow +/- means heterozygous mutation and red +/+ means homozygous mutation. If you run genetic genie, that's mostly what you get. If Yasko does your testing, you get this plus a long list of supplements you may - or may not - need. But there's no Step 1 do this, Step 2 do that sort of thing. You need to take your report, head over to the Heartfixer document I've posted/pinned and read it 20 times. Then if you're still confused, you can do a consult with one of the docs listed on mthfrsupport.com. Art majors either need to find their inner geek or hire one. But try not to be intimidated. I am - for real - a communications major with an art minor. I then went to business school. I barely passed chemistry by the skin of my teeth in HS. But when I had no choice, I dug in and became self-taught. Never underestimated the power of a parent's love and determination!
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Trying to Understand PANDAS flares
LNN replied to Mommy2MCL's topic in PANS / PANDAS (Lyme included)
I'm going to toss in a little tough love here. The dramatic need for reassurances could be anxiety or some sort of OCD. OCD has 5 general categories: Checking, Counting/Symmetry, Contamination fears, Intrusive thoughts and hoarding (tho hoarding may come from a different part of the brain and it may be a separate issue from OCD - there's some debate). In young kids, the checking often comes from a fear that their perceptions of the world could be wrong. Do I really have friends? I'd better ask mom and check. Does my mom really love me? I'd better ask her and check. I know she just told me. But maybe she was lying the first time. Or maybe she changed her mind in the past 30 seconds. I'd better check and ask again. The OCD fear can be so overwhelming and it terrifies kids who don't recognize it's the OCD voice creating an illusion, that it's not real. So no, what you're seeing is not a normal 8 yr old response (aside from 8 yr olds who've had trauma, lost a parent, etc). Our instinct is to immediately rush in, smother them with kisses and make certain they are certain of our endless love. It's a normal response, but not necessarily the best response. By continually feeding the OCD monster who's kidnapped your daughter, you're paying ransom and unwittingly making the OCD stronger. "Hey, this could be a legitimate fear" your daughter thinks. My mom is going out of her way to tell me she loves me. Maybe she's trying to hide something, maybe she doesn't really love me". OCD will twist reality that way. Plus, by twisting things, OCD gets more and more of both your attention and your daughter's - exactly what it wants. You reward the questions when you respond to them. So as much as it hurts, you may want to introduce your daughter to the concepts discussed in "What to Do When Your Brain Gets Stuck" and you may want to read "Talking back to OCD" for yourself for ideas on how to be a bad-a** coach to help her fight back. You cannot beat OCD. It has to come from within your daughter. Your role has to be the coach, teaching her to say no to the worry thoughts. When my daughter went through this, I'd tell her "Look, this is the worry fairy playing a trick on you. I love you to the moon and back. Nothing will ever change that. But I'm only going to tell you this once. I am NOT going to play games with the worry fairy and give her all of my attention. The next time she whispers to you that I don't love you, you need to tell her it's a lie and you're on to her little games. You have what it takes to not be bullied by that fairy. You are strong brave and I believe in you." She'd then nod, give me a hug and ask "So I forget - do you love me?" At which point I'd let out an "Arrrggghhh!" and say "sorry, I don't talk to fairies". I'd make it fun if I could but I had to stand firm. She needed to learn to fight back when the thoughts came. When the fear then morphed into "I have no friends" I'd say, "well, sounds like you've decided to let the fairy be your only friend. I'll call Emily and Abbi and Morgan and Camdyn and Sklyer and tell them you're sorry but they can't be your friends anymore because you've decided to spend all your time with the worry fairy instead." She'd get mad at me but I made my point. I know you just want to put a quick end to the fears but the books I mentioned might give you some tools to help in more effective ways. -
Did they really stop permitting 23andme?
LNN replied to bigmighty's topic in PANS / PANDAS (Lyme included)
Rumor only - but this was just posted on FB "Dr Lynch is saying he got an email from 23 and Me asking him and others to stop recommending the test kits in a week..." Dr Lynch would be Ben Lynch at mthfr.net. The 23andMe site looks like you can still order kits but am guessing they've been giving a date by the FDA by which they have to comply. So I'd either order the kits now or contact Yasko to see if she's at all affected by this change in terrain. Yasko may continue to be an option since she's a NP and provides medical consultation. But she's $300 more than 23andMe. So some things to consider. -
Did they really stop permitting 23andme?
LNN replied to bigmighty's topic in PANS / PANDAS (Lyme included)
The FDA issued a warning letter last week telling them to stop marketing the kits. I don't know if that means they have to stop selling or processing kits. I think they're still doing this, they just can't market. But I'm not positive. I did sign the petition. If you haven't done the kit and are thinking about it, I'd act now. Not sure what the future holds. -
What to expect from Steroid Burst?
LNN replied to MissionMama's topic in PANS / PANDAS (Lyme included)
Because symptoms started returning when you finished abx, there may still be an underlying infection. If this is the case, the response to prednisone may either not be what you hope for, or may not last. Remission generally doesn't happen until the infection is gone. But if the infection is gone and you're just needing to address inflammation, you might see improvement within days or sometimes weeks. Everyone is a little different. Without over-analyzing it, keep a symptom chart if you haven't started one already. You can even go back to Oct and make a reasonable guess at daily symptoms from that point forward (use your old posts on this forum or emails to friends as a kind of diary to help with recall). In Excel, list the dates in a row. Then in Column A, list 1-5 symptoms (e.g. tics, OCD, adhd, handwriting etc). Not too many, just the major ones that you're using to judge good days vs. bad days. Under each day, rate the symptom (1=good, 10=worst). Then graph the past month plus the coming weeks. It will give you a visual of how your son did on abx, off abx and now on prednisone. It really helps the docs quickly assess things without having to follow a long narrative. You can also use text boxes or write in by hand any events on a particular day that may have caused a spike or improvement (e.g. above the 12/3 bar in the chart, write "started prednisone") -
qannie - the reports you get directly from 23andMe are mildly interesting. The real value is in the raw data. Once they run your sample, you download the raw data (on 990,000 snps) onto your hard drive and then go to a different website called geneticgenie.org. They have a free app that pulls your raw data on the 30+ genes involved in methylation and spits out a report on which of these 30 genes have mutations. So it's the raw data that's the real nugget, not the 23andMe reports. This thread (#18 which is pinned under Helpful Threads for Pandas at the top of the forum) http://latitudes.org/forums/index.php?showtopic=3928&page=2 goes into step by step details. If you're considering the test, you should act quickly. The FDA seems to have it out for 23andMe and issued a warning letter at the end of Nov telling 23andMe to stop marketing their kits. Yesterday, a class action lawsuit was filed naming 23andMe as defendant, claiming they fraudulently sell a kit with false claims. The lawsuit smells like 5 day old fish - the plaintiff filed the suit within weeks of getting her results back, so it seems she intended to file the lawsuit before she even ordered her kit and it seems like someone with a political agenda put her up to it. Nonetheless, there's mounting pressure on the company and if you're going to do the test, you should do it sooner rather than later. Once you download your raw data, you can put it on a thumb drive and store it in a safe deposit box, or do your own research as science progresses. But the window of opportunity to do this may be closing.
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Grapefruit seed extract is doing something
LNN replied to tu4four's topic in PANS / PANDAS (Lyme included)
Yeast was my first thought, as you mention a decline in silliness, hyperness and rage. Ask for a month of nystatin when you see the dr. Diflucan works too, but is harder on the liver. We've done both. I prefer nystatin as a gentler option. -
You can put the drops of methylfolate onto any food and it will get absorbed. It doesn't have much of a taste. But the B12 - different story. My DD would not keep the sublingual under her tongue, so I gave in and dissolved it in a medicine cup of water and let her drink it. It did nothing for her. She tested B12 deficient after many months of giving it to her that way. And she always complained of fatigue. My DH (who has a very close relationship with DD) persuaded her to learn how to stick it under her tongue and within a week, her fatigue lifted. I'd been told by our LLMD that B12 doesn't survive stomach acids well, and so it virtually useless in a multi or swalloed form. That seemed to bear out in my little study of one. Taking it sublingually seems to be far superior and I'm sure injections would be even more effective. I'm not sure what to suggest. But I can tell you it can make a big difference mood wise. Is his objection an OCD thing? Perhaps you could start a new thread and the experts could chime in with ERP ideas on how to get him over his aversion to sucking on the sublingual?
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Depending on where you live, an integrative doctor/osteopath may be more helpful than a doctor affiliated with a children's hospital. So it's not only a matter of their specialty, but also a matter of the political environment in which they practice. As Pr40 says, their beliefs about Pandas matter far more than anything else.
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Sam-e, inositol, etc. & Methylation
LNN replied to monarchcat's topic in PANS / PANDAS (Lyme included)
Monarchcat, It sounds like you've done your reading on methylation and you've certainly been at this long enough to know your own child. The one thing I've finally wrapped my brain around is the idea that being an under or over methylator isn't a black and white thing. You can be an undermethylator at certain points in the cycle and an overmethylator at other points. It becomes a unique balancine act depending on your genetics. So its great that you'll have 23andMe data to guide you. Takes some of the guess work away. On the inositol, 1.8grams is a pretty low dose. The studies I've seen take adults up to 18 grams/day. My son went as high as 5-6 grams when he was 7. It may have taken the edge off the worst of the anxiety, but didn't really have staying power. I never tried SAMe. It seems to really help some people and not others. I think SAMe is mentioned in this document http://www.heartfixer.com/AMRI-Nutrigenomics.htm (keep this link - it'll be very helpful when you get your 23andMe results). But it's not the supplement I see most often used. Methyl or hydroxyB12 seem to be more widely used. Not totally sure why other than the B12+methylfolate not only goes on to make SAMe but it also works further upstream to reduce homocysteine and convert it to cysteine, which then goes on to become glutathione. So maybe the methylfolate+methylB12 provides two benefits as opposed to just the SAMe. IDK. On the cal/mag/zinc - you may want to consider giving just magnesium citrate without calcium. Calcium is excitatory. I've never understood why cal/mag supps are sold as a combo. They are ying/yang. I give magnesium at bedtime and zinc in the morning. When my son started high dose zinc supplements (for pyroluria) he had an amazing response. But then we increased the dose and he had a bit of a step backward temporarily. Not clear why - zinc supports the immune system, so maybe as his immune system got stronger, he could fight infection (lyme) better and that caused a temporary worsening. But we were told it was a normal response for those who were zinc deficient. That we should increase the starting dose of 10mg up to 20mg only after a month, and then wait a full month before increasing it again. Sometimes I think the body needs time to "rehab" and recover from long struggles and it can only handle increases slowly. You might be interested in Dr James Greenblatt's books - he advocates for testing zinc as a major contributor to eating disorders, anxiety and depression. http://jamesgreenblattmd.com/ He's a professor at Tufts. I know everyone thinks Perfectionism OCD is the "best" kind of OCD to have but OCD sucks no matter what form it takes. For now, maybe you can use his obsessions to your advantage and push foods that are balanced. Because OCD can pervert any message, I'd refrain from focusing on "Kale is a great source of xxx" to the point where that's all he'll eat. Instead, maybe say "the goal is to have 123 of x, 345 of y and 789 of z every week" and see if you can get him to strive for "balance" as a nutrtional goal. Also reinforce how healthy it is to be hydrated. This will help him detox. You're an old-timer, so I don't want to insult you with the obvious. But after 4 yrs of abx, don't overlook yeast. It can trigger OCD and Pans symptoms as well. I think you're definitely on the right track. Hoping your results come back soon! -
For those who may be interested, there's a petition at change.org urging the FDA to no ban home genetic test kits. The campaign is almost half way to it's goal. https://www.change.org/petitions/fda-administrator-margaret-hamburg-don-t-ban-home-genomics-kits
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Molybdenum helps the body break down ammonia and is very helpful for those with a CBS mutation. Solgar makes a molybdenum chelate in 150mg tablets.