LNN

Tap, tap, tap (me tapping my foot, with arms crossed, telling you to have her pee in the cup already! ) Short term, few weeks, probably not a big downside. But too much anything isn't a good thing. So if she's peeing zinc out of her body before her immune system gets a chance to use it, then giving CORE will help. First few weeks, the body will probably soak it up and get to some sort of equilibrium point. Beyond a few weeks, if you have KPU, then the body will happily keep sopping up the zinc et al and then start to drop metals, if those have been glommed onto (that's a medical term) in lieu of the zinc that had been missing. So you need a binder (usually lots of chlorella or DMSA or Alpha lipoic acid)to bind to the chelating metals. If you don't do this step adequately, you may stir up the metals without getting them out. But if she doesn't have KPU, then giving CORE for more than a few weeks could put other things out of whack. Zinc is an agonist to copper. Too much zinc and copper levels can get too low. The other minerals/vitamins in CORE also need to stay in balance with other minerals and vitamins. More is not always better. The goal is "just enough". Except in people with KPU (whether inherited or infection-related), their bodies have never had just enough. So the mega supplement brings a deficiency into a normal level. So you need to have her pee in the cup, tell your family not to open the jar in the fridge that's wrapped in tin foil, and do the test. Do it on a Sat/Sun and freeze the pee until you can get to FedEx on a Monday. Yes, my Pandas friends reading this - I have gone off the deep end. No longer just worried about strep. I now publicly talk about metals and detox and all the nutty lyme stuff. But DS is so much better. So I guess you stick with what works. For us, vitamins and minerals have helped far more than pex or IVIG. Who knew? Sorry to hijack the Pandas forum with this thread.

Smarty - LOVE your post! For whatever horrors life has dealt your family these past few years, you've grown into such a wise® woman! Here's hoping you have one of those serendipitous moments in the near future and you find an unexpected and opportunity-filled solution to your current dilemma. Eljomom - listen to Smarty!

Yes, you're right. KPU, for those who have it, is thought to be (one of?) the condition that's making it so hard to fight the lyme. You have that right. It's a chicken/egg thing as to which came first, but the steps are to treat KPU then go back after the lyme. Some feel that if you do it in this order, you may eventually get rid of both conditions. My comment was geared more toward the other possibility. In my family, I tend to think KPU was always there and may always be there. But then lyme came and it's been hard to treat because of KPU. For DS, I'm not counting on getting rid of both conditions. Only the lyme. We may need to treat the KPU forever, but in time, that may mean only one pill/day and I can live with that. It will be like having to take a multi-vitamin every day, only stronger. I'll be happy to see both go away, but that's not my mindset right now. Sorry if I confused you.

If your doctor is willing, you can test for C4a immune complexes to indicate possible immune response to mold. Google "C4a mold" and you'll hit on some research articles. Be careful cleaning. Bleach is not a good mold killer - it will grow back, possibly resistant to bleach in the future. Peroxide is better. You can google other ideas as well. I think I read vinegar - can't recall. If you remediate mold, you need to seal off the area you're cleaning. Mold spores can get airborne and "re-infect" new areas of the house. You may want to post on the lyme forum about air cleaners - some are better than others. From all you describe, this seems like something worth looking into. Surviving Mold and Mold Warriors by Dr Shoemaker may be helpful. You can find lots of research on mold illnesses. What's not discussed as often is how mold can also screw up the immune system and make it harder to fight other stuff. You're never going to find a research article on mold+Pandas but if you read up on mold, or mold+lyme, you may find yourself with all sorts of light bulbs going off. If you go down this path, there are some other forum families (esp on the lyme forum) who have a lot of knowledge (I'm not one of them). Good luck!

I didn't have any particular natural supplement in mind - there's a whole group that my LLMD is trying to get into capsules. So it's only a suggestion that if there's something your doctor thinks could help but it comes in an unpleasant form, there are ways to get some things into capsules. The more I learn, the more I realize that there are indeed many things that cause similar symptoms. Mercury toxicity causes brain fog and excessive urination and mood issues. Yeast can cause ADHD, hyperactivity, impulsivity, rages. Tick borne illnesses can cause a whole laundry list of symptoms. There's so much cross-over that it's really really hard to be objective and zero in on one or two primary causes. That's why I like the idea of the body being a bucket. Add one or two issues and the body can cope. Add a handful of issues and the body overflows with a cascade of symptoms, creating even more opportunities for viruses and bacteria to set up shop. It's likely that once you're sick long enough, it's not possible to find "one" problem that will fix everything. It's more likely, IMO, that you're looking at the need to peel things away until the bucket isn't overflowing anymore. Treating some things makes a bigger dent that treating others, but the thing is that you need to pick a starting point and methodically start bailing water. That's why I recommended focusing on what you've already identified as problems. Addressing metals and yeast could take enough load off the body that the body could then handle strep and other infections in a normal way, without long term abx. If you try to treat too many things at once, you never know what, if anything, is working. I strongly disagree with the idea that it's ever "too late" for abx. There is no window of opportunity that closes. I defy any doctor to show me cases where a child went untreated and was forever unresponsive because it was "too late." There are too many stories on here of kids who were mis-diagnosed for years and who are now responding with whatever has been the "correct" treatment for their particular situation. Do certain illnesses like lyme get harder to treat if they're chronic? Probably. Can certain things like metals poisoning cause permanent cell damage - probably. But I like to believe that growing brains have the ability to create new pathways and I refuse to be a pessimist. I hate to read the panic when parents feel they're missing one shot at getting their kids well. We all want to get this past us quickly so our kids can have healthy, joyful childhoods. In that sense, there is an urgency. But I personally don't feel that if "too much" time goes by, your kid is doomed. It hasn't been my personal experience anyway. IMO, your metals issue is far more imperative than anything that can be addressed with an antibiotic. If you rid the body of heavy metals, the body may be able to handle other things on its own or with far less aggressive treatments. But take all this with a grain of salt. I'm coming from a perspective of having dealt with this for 3 years and only now coming around to minerals and metals and finally seeing great results (long term abx help my son but weren't sufficient by themselves). You ultimately need to follow your gut. My answers aren't necessarily going to be your answers. Best of luck with your decisions.

No, my kids issues go beyond OCD. My son was "classic" Pandas, multiple confirmed exacerbations with strep, HUGE tics, adhd, rage, urinary issues...but he likely contracted lyme/bartonella a few months before the first strep and may have had KPU all along (odd moments in toddlerhood illnesses come to mind). My daughter's issues are primarily OCD/intrusive thoughts but a little ADD and some GI issues. Both kids had very high CAM K but my daughter has never had strep that we know of. Her lyme results are inconclusive. Some feel KPU can be lyme-induced and could resolve once the lyme is treated.For my family, I feel it could be an inherited/life long condition, as I had a zinc deficiency as a kid and almost always need abx to get over an illness. When the kids are over the treatment hump and funds are available, I may have myself tested. But not the priority right now. Getting your family tested might not be a bad idea, but if money is an issue, I'd test the ones most prone to illness first. Your son's results seem very high. My DS was 20, the threshold for "positive" and my DD was 13.6, making her borderline. You can call the lab to ask how your mistakes may have influenced the results - they've been very helpful when I've called. I think working with a naturopath whom you trust is a great approach. He/she probably has a lot of insight that will help. Maintaining a balance of vitamins and minerals becomes very important. Looking out for signs of mercury toxicity and having a way to bind any metals (that's what the chlorella is for) is also important. So having someone to help you with this stuff and who is quickly accessible is key. You see one-liners in the literature that link KPU with OCD but it's never the primary focus of the article. Same with bartonella. You'll see a phrase that says if an LLMD sees lots of neuropsych issues, suspect bartonella. Then the article goes onto something else. So hard to know what to do when the research just isn't there one way or the other. But the B vitamins are critical to mental health and brain functions and zinc is critical to the immune system. So if you know KPU is an issue, then treating with the CORE zinc/B6 supplement is going to help your son no matter what else is going on. It seems like a good next step to pursue.

My DS9 has had great improvement since starting this treatment - different kid in so many ways. My DD6 just came back borderline and we started treatment last night. No Pandas doc I ever worked with suggested this. While I think zinc deficiencies are generally accepted and readily treated, I don't have the sense that KPU is accepted in the mainstream. Most of the research on it is 30 yrs old and centered on schizophrenia. When that research didn't pan out, it was abandoned. You can ask Dr T - if any of the Pandas docs would be open to it, it would be him. I have a few links you could send him if you were inclined. We give CORE from Biopure. Started with one capsule/day and have built up to 3/day over the past 2 months. He also takes chlorella with each meal as part of the protocol. A few families on the lyme forum are treating KPU. You need to do blood work periodically to make sure minerals/vitamins are staying in balance. That, along with the possibility of mercury being dropped/chelated when you add zinc into a deficient system, makes it something I wouldn't treat long term without the assistance of an experienced doctor. But for us, it's been a critical missing piece. If you have a positive test result, I'd encourage you to find a doctor who will help you pursue it.

chronic sinus issues, problems greater when in one part of the house...have you explored mold or MARCONS (multiple antibiotic resistant coagulase negative staph)? http://ezinearticles.com/?Why-MARCONS-Prevent-You-From-Killing-Lyme-Bacteria-and-How-You-Can-Stop-Them&id=3662317 Not advocating the treatment in this article - it was just the first I came across to give you an overview. You can find more at www.survivingmold.com It's felt by some that those with mold sensitivities have a far harder time fighting illnesses and won't/can't get better until the mold issues and resulting inflammation are addressed. Something to look into maybe.

C3a immune complexes C4a C3d (maybe) Mineral/Vitamin levels (zinc, copper, iron, magnesium, D, Bs) In a few months, you could add the new lyme test next to Igenex, if it gets positive reviews

Hey - who's the babe on the blog? Pandas made me look like I've been hit by a bus - what did I do wrong? (Hope you guys have an awesome get together!)

Since you're seeing improvements and you have a lot on your plate already, my advice would be to not add too much more into the picture until/unless progress becomes questionable. You're right - yeast can cause at least some of the same symptoms as Pandas and metals can as well. Personally, I'd treat these things first and see what, if anything, is left. (of course, I don't know why you initially came to a Pandas dx, so that might change what I'm saying). In my experience, several things contributed to a whacky immune system and neuropsych symptoms. By treating a few of them, my son's behaviors and symptoms have improved significantly and what feels like more permanently. So it's like emptying a bucket until it no longer overflows. Metals are a fundamental issue, so tackling that could take you very far. I know it's natural to want to protect your kid on every front. But given the risk of making the yeast worse, maybe talk to the naturopath about natural anti-bacterials and anti-virals to offer protection instead of going down the abx path just now. One other idea - some natural anti-bacterials are pretty nasty smelling/tasting. Our LLMD has had some success getting some of the powdered supplements he recommends into capsules, using a compounding pharmacy.His pediatric patients find it a lot easier to take things this way. Hope the yeast and metals treatments go well!

Smarty, It can be really hard to 'enforce' the requirements like school attendance. Especially if you have no one on the other side to hand off to. The first step I think would be to take the "coach" concept in Talking Back to OCD and explain to your son that he has to be the boss. That there are lots of times in the day you won't be around, so he has to teach OCD to be afraid of him, not afraid of you. That you understand this is scary, but there's really no other option. And then reassure him that you'll be there to coach him, just not do it for him. What I did with my DD was explain this in a calm moment and get her psyched. But then as the moment of truth approached and she started to freak, I'd reassure her that I'd never ever ask her do anything dangerous. That if I asked her to go to school without me, it was only because I knew she'd be safe. That her fears were a trick, OCD trying to steal all of her energy and attention. Because OCD is mean and selfish and wants her all to itself. So the best thing she could do would be to make OCD mad and starve it of her attention. If she starved it, it would go away. I'd go on and on about how proud she'd be when she kicked OCD's butt. And we'd make huge deals out of every little success. I'd also tell her that if she couldn't find the courage to be brave at drop off time, then I'd have to stop dropping her off and she'd have to take the bus instead. this usually motivated her to try really hard - the fear of an abrupt goodbye was worse in her mind than the ability to say goodbye in the lobby. It took lots of bribery and pumping up. it was exhausting and I'd cry on the way home. I don't think I ever would've forced the issue to allow someone to drag her into the building, kicking and screaming. That would've felt so wrong. But we got to school early to give her lots of time for pep talks and getting acclimated to the flow of things. That helped. Ultimately, it came down to framing the problem in a way that allowed us to be on the same team, us against OCD, with me as coach and cheerleader, her as ultimate warrior and winner. Thankfully, success on one day helps for the next. But it's still incredibly hard. Until abx kicked in, every day was a huge struggle to do all sorts of things, big and small. For us, the key has been to make her own the battle, because really, she's the only one who can do what needs to be done. The "punishment" has come from her experiencing natural consequences - the feeling of self-disappointment and loss of doing things she enjoys when OCD wins. It's a ton of work, but she does finally internalize it and now says "will you help me fight it" instead of expecting me to make it go away. The change in mindset/ownership is what made the difference.

This question is for those of you who are in the middle or or have gone thru KPU treatment. I've read that fevers can come along as the immune system "wake up" and starts fighting things that have been hanging out in the body. We're seeing that now and I just wanted the reassurance that it's "normal". Two weeks ago DS9 had congestion/fever (never higher than 100) for 5 days. 3 of those days he felt very flu-like. His left lymph system was swollen (neck and groin) for 3-4 days and his right side was swollen for about a day. I initially thought it was all KPU but DD6 and I also caught the cold (no fever) so not sure how much was KPU vs. regular illness. This happened about 2 weeks after we increased from 1 Core to 2. On Friday, we increased from 2 Core to 3. Now DS is congested and running a 99-100 fever for past 24 hrs. His left lymph system is swollen again. No one else (so far) is sick. I want to assume this is a normal/good KPU response but of course when your kid is moaning on the couch, you second guess yourself. He'll be missing his third day of school today and it's only the 4th week. Not the healthy start I was hoping for. Anyone else have this experience of repeated fevers?

Ahh - I knew our kids had something in common! My understanding is that chlorella works down stream from the liver - in the intestines. So toxins go into the liver, then into the GI tract. Chlorella soaks up the toxins once they're in the GI tract. Could also work elsewhere in the body but not sure about the liver. However, small doses of chlorella have greater chance of nausea as a side effect that bigger doses. So not sure you'd want to give only a few at a time if you're trying to avoid nausea fears.

You could be right - could be extreme anxiety. But it could also be OCD. My son's friend has defiance as a reaction to intense anxiety in school - and he recently confided that he constantly worries that something bad will happen to his family if he's not with them. So he always worries when he's away from them. It's an intrusive thought kind of OCD. The obsession is that some horrible harm will come to his parents and by not being there, it will be his fault. The compulsion is to do anything he has to to be with them. This includes having anxiety attacks at school that force his mom to come get him. It's not necessarily as manipulative as I make it sound. I truly think he's so overwhelmed with anxiety that he can't function until he sees his mom again. But it is driven by an OCD thought. Regardless, I hear you when you said you feel like it should be an "us against anxiety" but instead it feels like "me against his will". One book that really helped me was John March's Talking Back To OCD. It talks about establishing roles. The parent is not the problem solver, the protector or the one who makes this hurt go away. The child is (the book is written with teens in mind but the concept hold true for younger kids with some minor minor accommodations IMO). The child is the only one who can control his own thoughts and fears. He is the only one who can boss back OCD. If the parent rescues, then OCD becomes afraid of the parent and never learns to listen to the child. You've been at this a long time, you know about ERP and baby steps. But the shift from being fix-it parent to being coach helped me a lot. You need to tell your son that if he doesn't go into school on his own, OCD/anxiety wins. And you love him too much to let him lose this war. So you will coach him and root for him and support him. But he must be the one who fights like he means it, not just go through the motions to please you. he has to internally want to be the winner. You can read excerpts here at Google Books: http://books.google.com/books/about/Talking_back_to_OCD.html?id=WxXWOAkaRN4C

When you say co-infections, are you asking about lyme or other things? There's the Igenex basic lyme panel for about $200 (you pay up front but can submit a claim to insurance and may get reimbursed, depending on your coverage). There's a new lyme test that's just come out from another lab that can culture spirochetes - giving you direct, undeniable evidence of lyme, much like a strep throat culture - that's about $500 (see the lyme forum or PM me for details). You can test for bartonella - a tick co-infection that's known for it's OCD symptoms, that can be tested for by Specialty Labs - a division of Quest - that's covered by most insurance. But like all lyme tests, it's not highly reliable because it's looking for antibodies, not for direct evidence. You can also test for mycoplasma with a general lab. The other thing you can test for is markers that immune system is activated. C3d immune complexes show a general activation (Dr B uses this test a lot) but it doesn't tell you what's causing any elevation. C3a and C4a immune complexes are associated with lyme and mold but again, aren't definitive. But they can be done by any lab and are generally covered by insurance. If your child does better with combo abx, that isn't something to dismiss. But ordering tests is only one part of the puzzle. Collaborating with a doctor who understands what to do with the results, what follow-up tests to order, what abx combos work best for various infections, what non-abx herbs might help, what detox supplements might help reduce symptoms...that's all important. In the same way parents feel more comfortable with a Pandas doc because they "get it", if you think there's more than strep involved, you may benefit from seeing a doctor who deals with lyme related issues more often, or with rotating or pulsing abx. If you're with a Pandas doctor now, you can ask about the above tests and see where the results take you. But if you have that nagging feeling that you're not yet at the bottom of things, then I'd suggest adding an LLMD to the team, not simply to look for lyme but because many of them also look into other things like mold, vitamin/mineral deficiencies, inflammation markers, detox, parasites, etc. It's just been more comprehensive for us. But just like each Pandas doc has their own approach, each LLMD will vary as well. They don't walk on water, they don't know more about everything. They just approach the problem with a different perspective. You still need to find the doctor that matches your views and who can help you develop the kind of collaboration you're looking for. If you decide to pursue, you can post on the lyme forum for more ideas.

I ask about weather only because mold loves moisture. So if he were feeling worse after a spell of rain or high humidity, it would make me think mold was "blooming" vs. if he felt worse on dry, sunny days. So tracking mold-friendly conditions might show you a pattern. The trailers introduce a whole host of possibilities. Trailers aren't well ventilated, could be great incubators for germs or mold or formaldehyde or other toxins. I hate carpeted classrooms. My son was much healthier once he "graduated" from our elementary school (all carpeting) and moved into the intermediate school (grades 3-6), where all the rooms are tile. Of course, we also started treating for lyme etc then, so that had a lot to do with it, but he stayed much healthier, far fewer colds, when he got away from the carpets - I think they must be great little nurseries for germs. It's a tough call, because if he's enjoying the social aspects and growing in that respect, pulling him from school isn't the first thing you'd want to consider. In a perfect world, you could have him just go to classes in the building and not in the trailers for a few days and see how he did. But I can't see how a school would go along with that. If all of his trailer classes were in one half of the day, say in the morning, you could make excuses for a few days and bring him in late, see how he did when he only went to classes in the building. But I doubt it would be that easy. Just tossing out ideas.

It's been a long time since I was up on my prednisone knowledge, but I do recall that when my DS was on it, I had to stop using motrin. I'm sorry I can't recall the exact reason why. I just know that they were doing similar things and it was something along the lines of if I gave motrin, I'd be giving more than the prescribed amount of anti-inflammatories. Not sure what the dose is in his nebulizer meds, but just be aware of "too much" of a good thing. Also, while prednisone gave us tremendous relief from the worst of times, you may want to make sure any active infection is gone first. I hope you can connect with the proper help quickly. Your story has moved so many of us. You will get him back. It just may not be a suddenly as you lost him. If your son could only know how many people are rooting for him and your family.

We're fond of milk thistle here too. But do I remember your DD is allergic to ragweed? My DD is and we can't use milk thistle for her. Instead, we use ALA (which is more of a brain antioxidant). You can also look into SAMe but not if you're using anything for OCD. I'll have to dust out the cobwebs. I know I've come across other liver detox things but can't recall what at the moment. I'll keep thinking...

Do the symptoms match what you saw when mold was an issue in your own home? Does the school have carpets in the classroom? Any water stained ceiling tiles? You'd probably be hard pressed to get them to tell you if there were any leak/water problems, unless you befriended the janitors or teachers and found out in a round about way. But what to do about it? Did you use chlorella or clay for mold treatment? Maybe add some or increase the dose/frequency if you're using any now. Definitely keep track of it all on a calendar. Also take note of the weather every day and write down if there was rain, humidity etc.

I hate the way OTC allergy meds affect my kids. We use Quercetin now - no side effects at all. You can buy it at any health food store - a natural antihistamine. It works as well or better than the OTC stuff. We also use OTC allergy eye drops when things get bad. My DD (now 6) started allergy shots 15 months ago when she was 5. She was incapacitated by allergies - housebound in the spring, eyes swollen shut. This spring, she only had minor issues that quercetin took care of. The shots have really helped. I don't feel they've over-burdened her immune system, but who knows. She's being treated for bartonella and possible parasites. For us, it was a quality of life issue. But if your son is allergic to molds, that could be different. Have you discussed with your LLMD?

KThomas, I second Nancy's recommendation to keep looking for the source of the problem and not just apply psychotropics, especially if they're not helping. Psychotropics are not without risks and can introduce new problems. I have had a wonderful experience since switching to an integrative doctor. He looks not just at lyme, but at a host of other possible insults (vitamin/mineral deficiencies, environmentals like mold and allergens, parasites, diet, etc). Our solution has not been "one" smoking gun but a combination of issues. By methodically treating each issue, the body has gotten stronger and the next hurdle hasn't been so daunting. My DH has been feeling poorly and our PCP blew him off. He'll be seeing an integrative doc next week. The way they approach illness has really hit home in my family. Of course, not all doctors are great just because they subscribe to a similar approach. There are good and bad integratives just like in any field. One place to look is here http://integrativemedicine.arizona.edu/alumni.html You certainly don't have to be an alum of Andrew Weil's to be a good integrative, but he's highly regarded and someone who's studied under him probably has an approach you may be looking for. You can also search on "complimentary and alternative medicine" or "intergrative medicine" or look for a doctor of osteopath in your area. As a broad generalization, DOs are trained to look at the whole body rather than one system at a time and tend to be more integrative. They have the same training as any MD plus an additional year.

You may want to contact ILADS or http://www.lymefight.info/ the KC/MO lyme organization to see if they can help you with some patient advocacy. I suspect the local group may have already helped others in a similar situation and know local laws, best approaches toward fighting this.

CD57 and C3a and C4a immune complexes can all be tested by any commercial lab, usually covered by insurance. (You can also order a standard western blot - just understand the results may be incomplete). Finding a doctor who knows what to do with these results is the harder part. IMO, lyme is too complicated for general practitioners. I don't feel getting Igenex is essential. But I do feel having the right doctor is. My advice would be for her to see if her doctor will order these tests. But then take the results, if they suggest lyme, and go to an LLMD.

We had a similar experience - great improvement in the first few months, then a severe herx/return of dramatic tics when we changed meds and added tindamax on weekends. We did tindamax for a month, but he became such a mess, (all sorts of "Pandas" symptoms), that we stopped. The tics and behaviors faded over the following 3 weeks. We did genetic testing to make sure his body could properly detox lyme toxins (HLA DR testing and inflammation makers like MMP and MSH, discussed on www.survivingmold.com) and found that piece was ok but we went on to look at KPU and he tested positive. He has a zinc/B6 deficiency that compromised his immune system and made it too hard to handle a strong herx. He's responding really well to KPU treatment and when that's done, we may look at metals (he tested somewhat elevated for mercury). Then, when we feel his body has been detoxed and supported enough, we'll look at the lyme/bartonella again (he remains on abx for this but we're not being super aggressive - just keeping things at bay for now). So it sounds like a herx. You can look at detox - milk thistle, betonite clay, chlorella (I like this stuff a lot), charcoal, water, alpha lipoic acid (ALA)...and good 'ol motrin helped for behaviors. If it continues for "too long" you may want to discuss with your LLMD what other barriers might be in the way. You can also take an abx holiday for a few days to see if things improve. Yes, it sucks to get worse before you get better. But not every herx should be "toughed out". Serious ones may indicate other underlying issues the body is struggling with. Food for thought...Hang on to the improvements. Eventually, I believe you can get to the bottom of things and get lasting improvement. DS is way, way, way better. It's just going to be a long journey.