LNN

My son is on zinc/B6 supplements for pyroluria - a genetic condition. He and I will take this stuff for life because our bodies excrete too much zinc/b6 before it has a chance to utilize it. So we have to "over-supplement" in order to maintain an adequate level. But in supplementing zinc, you can chelate copper and end up deficient in both. Blood tests confirm DS's copper deficiency. I was supplementing 3 days a week with copper (2mg) and he tolerated this just fine. But when he remained low on blood tests, his LLMD recommended supplementing copper every day. That's when he started having nausea and throws up within minutes, even if on a full stomach. Neither of us has a problem with the zinc causing upset (but then, we take it with meals). I'll try moving the copper to noontime. Thanks! smarty- if you want to hash thru the whole zinc/copper thing, PM me.

My son has been taking copper supplements for about a year and it hasn't caused any OCD issues. However, sometimes the copper makes him throw up - and since he usually takes several other pills at the same time - these are lost literally down the drain. He needs to take it on a very full stomach and morning seems to work better than dinner. Any thoughts on how to best minimize the nausea? I'm interested in starting copper for my own hip and knee pain but worry about the nausea.

My kids learned to swallow pills by practicing on tic tacs. If they swallowed one, they got to eat a second one. If they had to spit it out, it wasn't the OMG moment that I got if they spit out a precious abx. My kids also find it easier to put a sip of water in their mouths FIRST, then slide the pill into the awaiting "pool" of water, then swallow the whole thing. If they try to take pills the way most adults do - pill first, then water - they gag on the sensation and/or taste of a pill sitting dry in their mouths. As a last resort, when we were faced with a regurgitated pill, we'd take the mush and bury it inside the creme filling of an oreo. It tasted bad (especially bactrim) but the kids were able to get it down. On the augmentin, just a note to keep in mind - if you're on the XR version, cutting the pill breaks the time release aspect.

My memory's rusty on why Yasko thought it was relevant. It was one or two sentences amid a 2 hr DVD. It stuck out in my mind because of my son's experiences, but there were so many things in the DVD that I took note of that I can't remember what she was talking about at that moment. Her main focus is Autism, so I don't think she was talking about Pandas at that point in the video and she usually only mentions lyme in passing. I think she was either talking about chronic infection in general or else it was during her discussion of heavy metals. The only thing I remember thinking was "Hmmm - she thinks the body is telling her something but our LLMD has always said he doesn't pay attention to the ratio in kids" Sorry I can't remember the details. Shortly after (this was the Dec '11 time frame) my son's ratio was normal for the first time. It was right after we'd done some brief mercury chelation with DMSA. But when we did another test this past spring, the ratio was out of range again. Yet, symptom-wise he was good. Aside from Yasko, I've never found anyone who focuses on the ratio, so I don't know what to make of it.

We use milk thistle and garlic capsules. My son's BUN/creatine levels are usually fine by themselves but the ratio is almost always out of range. Yasko thinks this is very relevant, my LLMD thinks that in kids, it doesn't mean much. The milk thistle and garlic haven't helped his ratios but they make us all feel better and with all the abx, I'm certain the milk thistle is helpful.

Our LLMD advised us. He had us use CORE from Biopure, starting with one capsule/day and building up every 4 weeks until we were finally at 4 capsules/day. We did pause between moving from 1-2 due to a herx response, so we backed down to one for a few more weeks and then went back up to 2. We used a binder at the same time to capture/bind toxins that were cleared when the trans-sulfuration pathway started working better. CORE contains zinc among other things, so if you have elevated copper, taking Core is going to address both your pyroulria and high copper at the same time. Zinc will chelate the copper (another reason to use a binding agent like chlorella, charcoal or bentonite clay). You may well see mood swings and PANS symptoms but motrin will help. Pyroluriacs should also take Primrose Oil (an Omega 6)for inflammation. Here are two good articles http://betterhealthguy.com/joomla/images/stories/PDF/kpu_klinghardt_explore_18-6.pdf http://www.biobalance.org.au/_downloads/acnemjournalnov10.pdf (starts on Pg 3) Tho we had the guidance of our LLMD and could run things by him with a phone call or email, we only saw him every two months and went through the process and daily ups and downs mostly with the help of people on the lyme forum who were going through it at the same time. If you have an integrative or DAN or LLMD, they'd be the ones best able to work with you. The improvements my son gained were immeasurable.

You might want to look into doing the lyme culture by Advanced Labs http://www.advanced-lab.com/spirochete.php It would set you back about the same amount of money but you'd have proof positive, with a photo of spirochetes instead of the doubts that come from looking for antibodies. Since you guys are off abx, this might be the way to go. Philamom has done the test. PM her if she doesn't chime in...

Dr. Bill Walsh (who these guys seem to be in synch with) has written a new book http://www.amazon.com/Nutrient-Power-Heal-Biochemistry-Brain/dp/1620872587/ref=sr_1_1?s=books&ie=UTF8&qid=1339328122&sr=1-1&keywords=nutrient+power or you can order it directly from the Walsh Institute http://www.walshresearch.mybigcommerce.com/nutrient-power-book/ In the current issue of Latitudes Online, he gives a synopsis of his current thinking. Also, here's a link with presentations given by Walsh in the past. I looked at the Behavior Disorder presentation and it had some interesting points http://walshresearch.org/MedicalConditions.asp and here is a video on the Walsh site by Dr Mensah http://walshresearch.org/Video/FeaturedVideo.asp?var=http://www.youtube.com/watch?v=IAs0cKQcxvI?version=3&hl=en_US&rel=0&var2=Dr%20Albert%20Mensah%20On%20Mental%20Health%20At%20Outreach%202010 I hope these docs pan out - sounds promising!

Band 41 means you've produced antibodies to a bacteria that has a tail (flagella) - includes lyme, syphilis, H pylori. It is not lyme-specific. Under helpful threads, I posted a few articles that explain all the bands.

Yesterday, Denis Asselin reached Boston. His walk, to honor his son who suffered from body dysmorphic disorder, was pretty inspiring. He raised $17,000 for the IOCDF. Here's the CNN story http://www.cnn.com/2012/06/07/health/asselin-walking-finish/index.html?eref=rss_topstories&utm_source=feedburner&utm_medium=feed&utm_campaign=Feed%3A+rss%2Fcnn_topstories+%28RSS%3A+Top+Stories%29&utm_content=My+Yahoo Just before I went to the rally, I bought a thank you card. I wrote a thank you note for the IOCDF to give to someone who's donated funds to Pandas research. I don't know who will end up getting the card, but I wanted to personally thank a donor who's willing to support research. Last year, IOCDF changed its giving guidelines and now lets you direct your donation toward a specific area - maybe BDD research, Pandas, or just a general fund to be used as IOCDF sees fit. If you're in a position where you can't donate but would like to thank those who can, you can send a thank you note to the IOCDF Development Director, who can then pass it on to a donor. The same idea would apply to the other Pandas organizations, to Latitudes, or to any non-profit who touches your life (or all of them). If you can't give with money, consider giving thanks that can be passed along to donors.

A forum mom shared this with me and I thought it was worth passing along... Navigating the Storm Some excerpts: "Be confident when dealing with medical professionals....They are expert consultants, but you (When I say “you” I mean one or both parents or the person who has the power to make decisions for the child.) are the ultimate authority on everything having to do with your child...The best doctor/parent relationships are based on a mutual commitment to providing the best possible care for the child. You have to work together. Make sure your child’s doctors know that you expect nothing less. Be prepared for the jerks.You’re going to meet some...I have a magic phrase. I have it ready for all the people who use words like brat, and control your kid, and what the ###### is wrong with him and this isn’t a playground, you know! My magic phrase is this: You have no idea what you’re talking about. No muss. No fuss. I don’t get all worked up, Carter doesn’t see me getting all worked up, and since people expect me to push back, their surprise knocks them off course. Get a magic phrase. You can use mine if you want, or make your own, but have it ready! People are going to tell you that you’re strong. They’ll say you’re special, extraordinary, a hero. They’ll even call you an angel. It’s OK that you’re not. Raising a child with emotional and behavioral challenges is wickedly difficult. You don’t have to do it with grace, finesse, or style. (There are no points for any of that, in case you hadn’t heard.) You just have to show up and do it.

Right there with you! In fact, that's the way I personally refer to it, in my head. Now that you mention it, I do too, without even thinking about it. Someone today said "M-T-H-F-R" - each letter separately - and I had to stop and think - oh yeah, that's how you have to say it in mixed company." In my head, it's the other word. DeeDee - my exact thoughts.

So glad this is helping! if you do see liver issues or want to be proactive, you can consider something like milk thistle, which helps cleanse the liver. Both ibuprofen and most antibiotics are processed through the same liver pathway that milk thistle helps. The only thing you have to be aware of is that milk thistle can effect the rate at which certain medications are metabolized. Probably not an issue for little kids, but would be for adults. So do a google search on meds and when milk thistle would be contra-indicated. Milk thistle belongs to the ragweed family, so an allergy to it is possible. But it has worked well for my family.

I posted this thread a few days ago - it's a link to a very good overview of why MTHFR is important for those with mood issues/anxiety. http://www.latitudes.org/forums/index.php?showtopic=17664 In a very basic nutshell, your body goes through a process called methylation. It happens thousands of times per second. You can think of it as a sort of metabolism - it's the way your body takes nutrients (vitamins/minerals/amino acids) and converts them into specific "chemicals" that your body needs. For example, your body takes in folate (vitamin B9) and methylates/metabolizes it into methylfolate. Methylfolate does two things - it helps your body make glutathione and it helps your body make seratonin. The gene that controls the methylation of folate into methylfolate is your MTHFR gene. Approximately 12-40% of the population is estimated to have a mutation on this gene (depending on your ethnicity). There can be hundreds of possible mutations but the two most studied are called C677 and A1298. If you have the C677 mutation, your body cannot do a good job converting folate (found in foods, fortified cereals, multivitamins) into methylfolate. Your body can't use raw folate. It has to be converted into methylfolate first. If you have one mutation of C677 (called heterozygous), your body is only about 40% efficient at doing this conversion. It's like having one hand tied behind your back. If you have two mutations of C677 (called homozygous and means both parents carry this mutation) then your body is only about 10% efficient (two hands tied behind your back). If you can't methylate folate into methylfolate, you will be deficient in both seratonin and in glutathione. Pandas kids care about seratonin because a seratonin deficiency leads to anxiety, OCD and can effect GI function. But the MTHFR is not exclusive to Pandas. It effects the entire population. But the impact on seratonin is important to Pandas kids. If you have the C677 mutation, you can help your body by supplementing with methylfolate. This way, your body gets what it needs even tho it isn't capable of making the stuff itself. You can then make sufficient seratonin (assuming you don't have genetic mutations on the other genes that are involved in methylation). You can then also make more glutathione, which is critical in helping your body remove damaged cells and toxins (this is one reason why an MTHFR C677 mutation is also linked to heart disease, stroke, macular degeneration, certain cancers and leukemia). If you have an A1298 mutation on your MTHFR gene, this effects your body's ability to make BH4, which plays a role in making seratonin and dopamine. Again, these things are important to Pandas kids but also important to everyone. You can help the body work around this mutation by supplementing. TMG/DMG is one supplement I've seen suggested for this mutation, but there is less literature on this mutation. People with this mutation are likely to have additional gut dysfunction. So to recap, there are many genes that play a role in how your body methylates (converts) nutrients. One of the key players is your MTHFR gene. If you have a mutation (Pandas or not), you are more likely to have issues with anxiety, mood, fatigue, a family history/risk of heart disease, stroke, cancer, macular degeneration and a reduced ability to rid your body of toxins and damaged cells. Some of us have found that if this gene mutation is present, and we help the body gets what it needs but can't make on its own by giving specific supplements, our kids improve in terms of moods, anxiety, energy and/or GI issues. It is only one piece of the puzzle. Treating MTHFR mutations will not "cure" Pandas. Many people without Pandas also have this mutation. But working around this mutation will address a root cause of some issues in a way that antibiotics, IVIG, steroids or plasmapheresis cannot touch.

I posted this on another thread, but wanted to add it here so there's a more comprehensive list in one place... andrographis, oregano, olive leaf extract, garlic - all have antibacterial or antiviral properties and research studies to support their use. L-lysine did an amazing job when my DD had Epstein-Barr (again, research shows L-lysine is effective on EBV and herpes viruses). Samento/cat's claw can be useful xylitol - as a nasal spray or gum - works by preventing bacteria from adhering to soft tissue in the sinuses and throat. But if you use the nasal spray, you have to squirt and then move your head upside down, back and around so it swishes around in the nasal cavities. When my kids just squirted without the gyrations, it didn't help much. Monolaurin - has great research - but for the life of me, I don't know how you get this into your kids I spent $20 on the Lauricidin pearls and didn't get a single one into their bodies. Maybe if they liked coconut, I could get some coconut milk into them. IDK. One note of caution - some herbs carry the risk of allergic reaction. 1% of people are allergic to andrographis. Guess whose DD is in that 1%...So always watch for hives, rashes, itching, breathing trouble...particularly if your child has other allergies. My DD is allergic to many abx and many weeds/pollens. She struggles with andrographis, oregano, resveratrol derived from Japanese Knotwood...so just be aware that adverse reactions are possible, just as they are with pharmaceutical abx.

I hope this thread doesn't turn into a debate or make people feel like there's some sort of sides to be chosen. I was only trying to say that for those who don't have access to experts in epigenetics, this was one area that I felt comfortable treating with mostly only my own research as a guide. For my situation, it was less bumpy and more straightforward than many other issues I've had to tackle solo. If you have access to an expert, by all means, that's the way to go. I just didn't want a parent to think "OMG, my kid has this mutation and I don't have a doctor who can help, so we're screwed." In my experience, this was something that was pretty easy to navigate once I studied up on Yasko and Van Konyenberg. Van Konyenberg is the first to say "hey, if you can get a doctor to help, do it." But he knows so many CFS patients are on their own. So he maps out a conservative approach that's fairly safe to try on your own and that's based on Yasko's approach. I think reading up on these two experts can help guide you if you aren't fortunate enough to have access to an experienced epigenetic doctor. That said, I entirely understand and respect the viewpoint of those who disagree with me.

Like Nancy, I'm just going to toss some things out for you to investigate on your own. I don't want to jeopardize your NIH eligibility but many of the the things I'm mentioning are also found in foods and have short half-lives - not titering up or down, all low doses. These are the supplements that worked for us at one time or another. I have two kids - some supplements worked well for one and not the other. You'll have to do your due diligence. I'm only giving you some things to consider. 1. Natural antibacterials - there's a thread about natural antibacterials you can look into. Olive leaf extract, garlic, samento/cat's claw...anti-virals like l-lysine, oregano, andrographis... Vitamin D3, B6 and zinc are important for the immune system - consider supplementing these. My DS had an amazing response to zinc + B6 2. anti-inflammatories/anti-oxidants (help the body eliminate toxins and damaged cells) - resveratrol (the antioxidant in wine that's good for you - also derived from Japanese Knotwood in addition to grape skins), CoQ10, quercetin, tumeric, curcumin 3. natural calming agents - tryptophan, 5-HTP, valerian root, melatonin, gaba, Tryptophan has really helped my DD, who has extreme anxiety and worries about mistakes and has eating issues. It not only calms her but also seems to calm her GI issues, allowing her to eat without having Gerd or feeling like she's going to throw up. We started low dose - 170 mg and built up. At a bad time, she was up to 1 gram. But after a few weeks, she stabilized and then started to have hand tremors. We backed down to 500mg and the tremors resolved and her mood stayed stable. So that's been our sweet spot. The two important guidelines for adding anything is to start slow and go slow. If at all possible, add only one thing at a time and give it a week or two. If you add more than one thing at a time, you end up not knowing which thing is causing a good or bad response. But if you're in crisis, we've all resorted to throwing more than one dart at a time and go back later to sort it out. It's a balance between acting methodically and getting fats relief. If your child isn't entirely pill savvy yet, some of these ideas may not work. Others might come in capsules that you can break open and mix into foods or juices. Or you can look for foods that are high in some of these items - tryptophan, lysine, resveratrol, zinc, B6 - can all be consumed in food form. Just trying to toss out ideas so you can maybe find a few things that will work for you. I also second Nancy's idea - there are some very knowledgeable parents here who have great ERP/CBT ideas & experiences. If you want to post about problem behaviors/fears, we can brainstorm plans with you. Hang in there...

I love this magazine. Nearly all the articles are written by integrative or naturopathic practioners in CT. In this month's issue, starting on Pg 18 is an overview of things that can lead to anxiety and depression. On Pg 19 under the Genetics heading, you can read a simple explanation of the role methylfolate plays in the body. Natural Nutmeg If you like the magazine, you can search the archives for articles on lyme, Pandas, integrative approaches to various health issues. Both Dr Moorcroft and Dr O'Hara contribute articles periodically. Moorcroft had an article in the May issue on lyme and children. O'Hara had one on Pandas last fall I think.

We used niacinamide instead of regular niacin. Supposedly niacinamide doesn't produce a flush. Are you trying to produce a flush? I'm confused. FWIW - I was struggling with knee pain and hip pain. My naturopath recommended Omega 3s or flaxseed oil. I'm taking 1300 mg flaxseed/Evening Primrose Oil and the pain has reduced significantly (gone from knee, much better in hip). Naturopath said to think of it as grease for the ball bearings in the joints. Resveratrol also helped with inflammation issues.

I'll put myself out there for criticism on this one, but I'm going to do it anyway. For my DD, addressing methylation was a huge piece of her on-going recovery. However, while our LLMD supports us, orders follow-up blood work to check on progress and I run plans by him, I have to say that most of the things we've done to address her MTHFR and the rate at which we've increased doses have been largely on my own. I did an awful lot of research and had the benefit of having managed 18 months of herxing and integrative lyme treatments under my belt. So I didn't feel like a novice. But finding a doctor who's going to know how to help once the MTHFR results may not be easy. If you have a doc who has experience, certainly follow their guidance. But if you find yourself with a doctor willing to humor you and order the test but not knowing what to do with the results, I don't think you need to spend $600 on a consult with yet another specialist who's 6 hours away. I know a lot of people will take issue with this. But IMO, not addressing this because you can't manage adding another doctor to the team is worse than trying it on your own. You may get an unpleasant herx-like response if you go too quickly or if there are other undiagnosed issues. Ignoring all other issues your child may have (low zinc, high copper, yeast, infection...), then for the C677 mutation, I added 200mcg of methylfolate once a day for about 1-2 weeks. I bought Yasko's methylfolate drops so we could start at such a low dose. I put 10 ml water in a medicine cup and added 1 drop of methylfolate. Had DD drink it with her morning meds. We then moved up to 2 drops. Managed mood swings with motrin and/or charcoal. Then we moved up to 3 drops (800 mcg) and added 1000 mcg methyl-B12. We waited 2-3 weeks before taking each step and delayed if there was some sort of behavior upswings. That's it. That's what we're doing to cope with the MTHFR C677 mutation. Yes, we have other issues like high copper and pyroluria that I had help with from our LLMD. But if the MTHFR is your only issue, or if you're trying to decide between out-of-pocket IVIG with a doctor or first pursuing MTHFR work-arounds on your own, I'd definitely risk slowly adding methylfolate to a daily regimen - even without a doctor on board - before deciding something more agressive was the only way to modify behaviors. Not to mention that MTHFR has long term health ramifications if untreated. I'm all for working with an experienced doctor but I'd hate to make it sound like treating MTHFR is so difficult or risky that it can't be done if you can't afford an additional doctor you don't already have. If you do have an LLMD or integrative - absolutely get their input first. But between Yasko's videos and book and reading Rich Van Konyenberg's papers, I felt comfortable tackling this on my own. (for those with A1298 - read the above resources - the methylfolate drops aren't (the only?) thing needed for the A1298 mutation and I don't have direct experience). Ok - my garbage bag poncho is on. Toss tomatoes if you must.

My DD, who has the horrible NAC response, is heterozygous MTHFR C677. She is very much an under-methylator. So in this respect, our two kids have something in common. But NAC has multiple properties - as a glutamate modulator, a glutathione precursor, a biofilm thinner...and who knows what else. NAC can be both a sulfur donor and a methyl donor. I know DD has no problem with sulfur donors. She's taken bactrim - high in sulfur - with no issue. It's ironically one of the few abx she's not allergic to. Both of our NAC trials were done before DD was taking methylfolate/methylB12. So the last thing she needed at that point in time was more methyl groups that couldn't be recycled from homocysteine into methionine. Maybe if we used it now, it would go better. Just speculation and since DD is good, not going to experiment. Just thinking out loud. The other possibility is our kids have a difference in another pathway. I suspect DD has at least one other roadblock in her methylation cycle - she seems to need the extra help of tryptophan to make enough seratonin. Or maybe your DS just eats better than my DD and he gets more of what he needs from his diet. Maybe DD has a deficiency that makes NAC not work well for her. Just tossing spaghetti at the wall to see what sticks.

T&A was a great help to my DS. That's where his chronic infection was. He saw great improvements in the months following. However, it was not the end of our journey. I'd do it again, but would never suggest it's the last step you'll ever have to take.

My son had all of these. Tics went away for 18 months in our Pandas days thanks to Pex. They returned for 4 weeks when we used tindamax to treat lyme cysts - I think due to herxing/toxins. They went away once we stopped tindamax. it made me realize that at least one thing making DS tic was a reduced ability to get rid of toxins. So you may want to consider two things - adding more to your detox program and/or slowing down on how aggressive you're being with the lyme. Controlling inflammation is also critical.

When a baby learns to crawl, do you make it feel guilty for not walking? Or do you say "great job! and enjoy the progress, only then slowly moving toward standing, walking and running? Yes, there may be more you can do. But one step at a time. You do have 3 other kids who deserve your attention and nurturing. So pace yourself, have reasonable expectations, savor the progress and in time, you will accomplish everything you need to.

Not sure about the pancreatitis. But can tell you that hand-foot-mouth disease is going around, at least in northern CT. Fever 102-103, fatigue, no appetite, some nausea (DD threw up once but it was after taking pills so think that was what triggered it). Then the day after the fever, small hives/blisters appear, mostly on feet, bottoms of feet, fingers, around and in mouth...might be itchy, might not be. Hydrate, hydrate, hydrate...