LNN

S&S - we test copper, magnesium, calcium, D periodically, usually when we do CBCs, which is every 2-4 months. Not part of the CBC, we just do it while we're doing a draw for the CBC. Not sure this is the only or even most accurate way to test. For example, when we test zinc this way, it looks normal. Yet the kids have KPU, so there's actually a deficiency not showing up with a regular blood test. So maybe the same could be true for the other things we're testing. But...copper has shown consistently high for DD this way, tho it has started to drop since starting Core. Ironically, I have to supplement copper for DS, since he started low and the Core makes it drop even more. I also supplement magnesium, so we also check calcium, which was high but has recently started to slip and I'll have to find a good cal/mag instead. Phila - you get two results - an HPL measurement and a pyrole measurement. Don't recall the HPL info - LLMD didn't pay much attention to it. The pyrole number is one number. DS was 19.6 and DD was 13.7 (I think). Below 10 is negative, between 10-20 is borderline and above 20 is positive. Pyroles are byproducts of heme (blood) synthesis. They don't have a known purpose. But they bind to zinc. If you have a defect in heme synthesis, you produce a lot of pyroles, which bind to your zinc and cause you to pee out the pyrole/zinc compound before your body can utilize the zinc. That's why a blood test can show normal zinc levels in the plasma, outside the cell. But inside the cell can be deficient because the zinc isn't bioavailable. If you're looking for a measurement of various vitamin/mineral levels, then you can do a standard blood panel (thru Quest et al) or a specialty workup from labs like great Plains, Doctor's Data?, Genova, etc. Genova has one for @ $170 but that's not in our budget at the moment. I haven't done much research to know how reliable or better one type of lab test is over another.

Ok, sounds like a cosmic "ahem" to me I don't know of any way to check for KPU except the pee test. I've not looked at KPU with the focus you've asked about, in terms of a copper problem or a lover problem. But that doesn't mean those things aren't factors. The way I see KPU is that there's a zinc/B6 deficiency that hampers the body's ability to fight infection. Then if you get a chronic infection, the bacteria hoards metals (mercury, lead et al) (or a chronic virus will hoard aluminum and iron). Copper may also accumulate due to the lack of zinc to balance it (tho I suppose it's possible to have enough copper intake that you may not see this - for some reason, my DS has low copper even prior to taking Core). So you could see symptoms of 1. zinc deficiency/immune dysfunction 2. heavy metals problems 3. high copper problems 4. liver/toxin problems trying to detox this stuff or any or all of the above. When you add the zinc/B6 et al for KPU, you re-start a sluggish or inactive immune system and you also re-boot the trans-sulfuration pathway, which is the body's detox engine. So the body often soaks the zinc up like a thirsty sponge for maybe 4-6 weeks. Then it reaches a satiation point where things are working again. The now well-equipped immune system might 1. start fighting infection better, causing a herx. 2. The better functioning detox system could start doing a better job of eliminating metals, causing a herx-like phase. 3. The rising levels of zinc could cause the body to start naturally chelating high copper, causing a herx-like phase. 4. During all of this, liver support would certainly be a good thing, as would daily BMs. So I guess how KPU treatment effects you has a lot to do with how much of a problem any of these things are for the body and how long the blockage has been in place. Your focus, I think, will be on whatever aspect has been the biggest insult. For DS, it was mercury and detox. For DD it seems to be copper chelation. I say this because DS's brain fog was an issue @ weeks 4-7 and for DD, she shows a lot of "high copper/bipolar mood swings" but no brain fog. They have different issues even tho they have the same KPU label. It's common to have issues around weeks 4-6 and also when you increase dosage of whatever KPU supplements you're using. Sometimes you can push thru it, sometimes it helps to back down on dose and then build up once things stabilize again. Not sure if or how any of this will help your DS. But it seems like someone or something really wants to get your attention. Worst case, you're out $70 and get some pee on your hands. Best case, you uncover a missing puzzle piece! Just don't let any friends or family help themselves to the fridge for the 24 hrs you have a pee container wrapped in aluminum foil sitting next to the milk.

Bartonella has a life cycle of a few days. Lyme has a life cycle of approx 4 weeks. Not sure what the life cycle is for babesia or myco p. And to complicate it, if you have more than one infection, the cycle you see on a chart could be clear as mud. So it's not a perfect tool. But sometimes you luck out and you can see trends. It also helps because you can make notations on the chart, like when a new medication or supplement is started, or when someone gets sick, etc. So then you can look back over time and get a better overall picture. Doctors also seem to love it because it "quantifies" things. If you opt for lyme testing, you can go the Igenex route for lyme. There's also a new test (not Igenex) that came out in Oct. that can culture spirochetes - so there's no argument about whether you have lyme. See a swimming spirochete in the petri dish - you know you have lyme. None of this "what does this band mean?" stuff. I think it's about $500 and I don't know about insurance coverage. To test for bartonella, Specialty Labs - a division of Quest - has a decent test that's covered by insurance. You don't always have to use the $600 Igenex co-infection test. The lyme board can probably give you additional suggestions.

First, it can take time for behaviors to subside even after the start of antibiotic treatment. Second, because your daughter may be dealing with a current virus as well, which will not be effected by antibiotics, you may have additional hurdles that will take time to clear. It's frustrating for parents who see an overnight "on switch" because there isn't necessarily the same "off switch" that has an immediate reversal of symptoms. We're so used to antibiotics taking care of everything in the matter of days. But for PANS, the off switch can often be more like a dimmer switch, where it takes quite some time for things to de-escalate. Second, in terms of the EBV and HSV...50% of kindergartners have antibodies to EBV. 95% of the adult population has had it. Most of us never even know it, because we think it's a mild case of the flu. But sometimes a person gets hit hard and EBV can take months to fight. My daughter contracted it in October and is still struggling with fatigue, sore throat, headache, stiff neck...some days, she feels fine for a good portion of the day. Other days, she can barely get off the couch. We waited a month after her first symptoms because it can take time for the antibodies to show up in the blood work. You may want to re-check the EBV numbers as well as the ASO/Anti DNase in a few weeks. It's the movement of these numbers up or down that are more telling than the actual values. If still high, you may want to discuss an anti-viral medication. There are also natural anti-virals if that is your preference. As for augmentin XR - the pill has a coating which makes it an extended release formula. The pill is 1000 mg/augmentin. When my son was 60#, he could not take 1000mg at one dose, so we were told to split the pill. We later found out that breaking the pill defeated the time release aspect. He still got 1000mg/day, but lost the benefit of the XR. You may be better off with the ES. For the immediate, you may want to get the book What To Do When Your Brain Gets Stuck or What To Do When You Worry Too Much - both are written for school age kids to help them understand OCD and how to regain a sense of control. If you post additional details of her OCD issues (it sounds like her type of OCD is scrupulosity and intrusive thought OCD), there are several parents on the forum who may have excellent coping strategies for you.

You may want to consider charting your child's behavior if you're not already. Pick her Top 5 symptoms and each night, rate each symptom on a 1-10 scale (10 being horrible, 0 being no symptoms). Then total your score each day. You can chart this in excel or even on graph paper and get a day by day picture of her behaviors. The reason I suggest this is that different infections have different life cycles. Lyme has a 4 week cycle where it reproduces every 4th week and you often see a flair of symptoms during this week. Bartonella - a tick borne infection - causes a lot of neuropsych symptoms like OCD and has a life cycle of a few days. So daily charting lets you see patterns over time. Some parents chose to only track on a weekly basis, and that may be a more manageable approach long term, but for now, daily would help you see any trends more easily. One possible explanation for the perceived improvements you saw "on their own" could be a cyclical thing. If you pursue the lyme/bartonella thing, a combo abx approach is often used. We initially tried augmentin+zith which did nothing. We then did bactrim+zith and had great results. So sometimes it takes more than one trial to hit upon the right combo.

Her dominant PANS symptom - OCD - did not have much if any correlation with allergies - before or after shots. What we did see a spike in during allergy season were the secondary PANS symptoms - the things that overlap a number of conditions, not just PANS. Things like perfectionism, inattention, anger, and very rapid bi-polarish mood swings. These symptoms are also associated with under-methylators and a "high copper personality". Her under-methylation issues would get worse during allergy season because she'd be producing wicked amounts of histamine, which is a methylation issue. Turns out she has a mutation in her MTHFR gene and cannot use regular folate to recycle homocysteine (which results in higher histamine). So we just started giving her methyl-folate, which should help bypass her genetic mutation. I'll let you know in May We're also giving her zinc for borderline pyroluria, which is lowering her high levels of copper. Not a smooth road, but she's improving. So while it's all wrapped up in one little body, I think my daughter had/has three issues (at least) mixed in together. She has a PANS reaction to lyme/bartonella (OCD issues primarily). She has a genetic methylation issue which results in high histamine and all the health and behavioral issues tied to that (intense reactions, irritability, perfectionism, anxiety). And she has a copper/zinc imbalance that produces bi-polar mood swings (mania/depression in the same hour)and the low zinc impedes her ability to fight infection. It wasn't simply a matter of fixing one thing. If anything, the allergies/shots were tied to the methylation/histamine issue and the shots have helped her in that regard. The shots are given by an RN in her arm. (We've had to use a lot of ERP to overcome needle anxiety - not always a pretty scene - but that's fairly typical for young kids and I don't think has anything to do with any PANS).

There is a lot to consider that none of us can give advice on - what sort of medications your DD is on, how her other conditions may be at play, etc. You're not the only parent who's mentioned Chiari, so hopefully those with personal experience will chime in. But I second Kimballot's advice - step one in all of this is to find a doctor who will work with you, not against you. Labeling something as "behaviorial" is a cop out. It says "I don't know how to help you, so I'll blame the patient or maybe your parenting skills instead". ALL health effects behavior. Ever have a migraine and see your behavior change? So this doctor is telling you he's happy to take your money but not willing to be on your side. Fire him. Under the "helpful threads" section, there's a list of doctors who have helped or been Pandas friendly. There are a half dozen "experts" in Chicago, CT, Washington DC, FL and northern CA. Because of the ankle/shin etc pain, I would also consider lyme or bartonella as an infection that might be part of the picture. A DAN! (Defeat autism Now) doctor or a lyme-literate doctor or an integrative doctor may also be able to help you. These doctors generally look at the whole body and do more detective work than "conventional" doctors. They are big believers that behaviors are clues to illness and not a result of a willful child or bad parenting. I think you're right to link the September illness to the changes you've seen and I encourage you to keep pushing for answers. The symptoms you've listed are familiar to a lot of us and many sound like OCD behaviors (the inability to properly use the bathroom, to bathe or brush teeth, the inability to eat). I would do some reading on OCD and take the eating disorder very seriously. IMO, telling her to just not eat is not a good long term strategy. Some parents here have kids with very serious anorexia. But there are OCD therapies that may be able to help this from spiraling into a dangerous situation. Getting to a helpful doctor is the first order of business. If you want to post your general location, others may send you a private message with specific recommendation (you can access your private messages by clicking on your name in the upper right corner of your screen and you can set things up to get a message in your regular email account notifying you that you have a message waiting for you here at Latitudes).

I think this is a quality of life decision. My DD's (CamK 179, anti-lysogangliasides higher than highest measurement (>1200) seasonal allergies were so bad that she would not go outside to play for 6 weeks at the height of spring. Her eyes would swell almost shut. She was miserable. Even tho she was only 5, her allergies had gotten progressively worse each year. Zyrtec and eye drops and an inhaler barely made a dent. So we resorted to allergy shots. She's been getting them for 18 months and they've made a world of difference. Last spring we only had to give her allergy meds a few days out of the entire season. Her quality of life is night and day. The shots never seemed to have any impact on her in terms of episodes or exacerbations. Now, her PANS trigger is probably lyme, not strep, but I don't think that wold make a difference. IMO, the worst part of starting shots is the beginning, when the shots are so frequent. Very traumatic some weeks. But now we're at once/month and will probably stop them after this spring to see how she does. But in terms of stimulating auto-immunity, it didn't happen. Strep and lyme bacteria have an M protein on their outer surface that may play some role in the auto-immune attack. It's been speculated that cells in the basal ganglia may have proteins that look similar. To my knowledge, the antigens in allergy shots - the pollens in my daughter's case - don't have the same proteins. So it provokes a different immune response. I think it depends on quality of life. I personally could not ask my daughter to keep being miserable for 3 months every year for what proved to be an unfounded fear of an auto-immune response. But everyone has to make their own decisions.

You know, sometimes it's these weird, serendipitous connections that tell you you're on to something important for your own situation. Even tho this has nothing to do with PANDAS, it's like some cosmic tap on the shoulder saying "Ahem, Smarty? Paying attention to this? You may want to..." I hope it leads you to some really helpful discoveries for your son!

Not sure how far Tuscon is, but you can try the Arizona Center for Integrative Medicine or contact them to see if any of their graduates are practicing closer to Phoenix. http://integrativemedicine.arizona.edu/ You don't mention in your post what makes you think Pandas or an infection might be behind the ADD and anxiety. There are herbals and homeopathic remedies that can address various issues, but it's hard to offer advice without more information. The other thing you might consider, with the help of an integrative or D.O., is methylation. This is the chemical process the body uses to convert (methylate) various vitamins, minerals and amino acids into other essential elements needed by the body. If you have a deficiency somewhere in the cycle - either from a genetic problem with a particular conversion process or a nutritional deficiency or a toxin that's fouling things up - you can get the behaviors we're all familiar with - tics, OCD, ADHD, etc. An integrative doctor can help you explore what sort of issues may be contributing to your son's remaining issues, if you think it could be something other than an infection. You can google "undermethylation and overmethylation" or "pfeiffer" for some more background. In the interim, we've found multi-tasking to be very helpful for an ADD/ADHD brain. Chewing gum, standing, using a squeeze ball - all help with homework. Pencil tapping, sitting on an exercise ball, listening to music - sometimes help with reading. Drives a parent nuts, but helps the kid. CBT is very very helpful for anxiety. It's essentially a way to do a reality check on your fears and talk yourself off a cliff. It was very empowering for my son and he uses his skills all the time, even tho the anxiety is gone. "What to Do When You Worry Too Much" is a good place to start. Good for kids 12 and under. Freeing your Child from Anxiety is a good one for the parent.

IV abx is often used in lyme situations where oral abx either aren't tolerated or when symptoms don't improve as much as hoped. And Peg is correct - intestinal flora isn't harmed by IV abx. You can PM TPotter if she doesn't see this. They used IV abx for a time. Good luck!

Follow your instincts. As far into your journey as you are, with your ability to research and know your kid, I think you need to be heard. I think there are some areas where to doctor needs to have the final say and others where the parent needs to have the last word. What type and dose of abx is a doctor thing. What supplements, IMO, is a parent decision (unless the doc offers to pay for it all ). When we started with our LLMD, he definitely drove the bus. Over time, as I've learned more, I've become more of a co-pilot and we do more discussing back and forth. Some docs seem comfortable with this and others don't. Some patients want this and others don't. I think finding a long term doctor is like dating - expensive dating, where you have to pick up the tab, with a limited number of eligible dates. It sounds like you have reason to be frustrated. FWIW, I'd have done the same thing you've done - not gotten the additional blood draws. Can you call his office and specifically request that they fax a lab req to a local lab for CBC (and not mention that you aren't doing the other labs)? It sounds like your do isn't hearing you. But what to do about that depends on what your options are.

Have you checked for yeast with a blood test(IgM and IgG for candida)? You can also do a down and dirty "spit" test - before getting out of bed in the morning, have DS spit into a glass of water. Set the glass aside and check it periodically for the next hour. If he has signs of yeast in his saliva, the water may turn cloudy or the saliva will settle in "strings" or finger-like strands. Normal saliva just dissolves into the water and does not make it cloudy. I found this link very interesting, discussing all the other things that cause "yeast-like" symptoms: http://www.yeastinfectionadvisor.com/candidatests.html Also note that even if you treat yeast with nystatin or diflucan, you still need to re-build the gut with healthy flora, which is where a good probiotic can be very helpful. Probiotics are best taken at bedtime, away from abx and a few hours away from food. This is when the stomach acid is lower and the probiotics can sit in the intestines longer. As for the behaviors you're seeing, some kids do see a return or worsening of behaviors post-IVIG that have nothing to do with yeast or abx. I would also take pics of the rash. Yeast is not the only infection that can cause a rash and you may want the pics for future reference should other possible causes come to mind - strep, staph, tick borne, any many other fungi and bacteria.

Call the lab and ask. I can't recall if DD was on pepcid when we did the test (she's off it now). Their main goal is to make sure you're not taking a multi-vitamin, a mineral or vitamin supplement - anything that would throw off the results. We stayed on abx and probiotics. We did stop milk thistle, as that changes liver metabolism and I didn't want to throw anything off. I would call the lab with your specific questions. If the receptionist isn't sure, she can ask one of the lab techs. That poor lady fielded more than one call from me!

LFran - the gene testing for your ability to detox mold/lyme toxins is an HLA-DR gene test. It should be done at Labcorp. The MTHFR gene S&S refers to is a methylation marker - a mutation in this gene means you have trouble converting folate and instead need to supplement with methyl-folate or else you'll have issues with methylation, energy, inflammation and possibly detox issues downstream. We had this test done by Quest. The lab's "retail" fee was $450, the insurance "negotiated rate" (what a scam) was $50 and because we'd met our deductible, our out of pocket was $10. If we hadn't met our deductible, it would've been $50 - so not a hugely expensive test and the result can help you a lot - IMO - the MTHFR test and the KPU test were game changers in my house. The HLA-DR test was helpful but because our result wasn't the "dreaded" one, it hasn't played as big a role in our treatment plan, but still helpful to know). Keeptrying - for detox, we use milk thistle (for the liver) and charcoal (3-6 capsules). Have used clay pills in the past. Because binders can cause constipation, we also give 1-2 psyllium husk capsules (or you can do a fiber/metamucil type drink). Have found that 200 mg of magnesium (we use mag glycinate) keeps BMs regular. Detox only works if you have elimination - need to both bind and eliminate the toxins. Water is good for any body and my kids drink a fair amount of it. But that will primarily flush the kidneys. The detox for most of the toxins is thru the liver/bowels. You need water to keep the bowels moving too, but water alone probably isn't sufficient for the kind of detox you're looking to do. Epsom salts don't seem to help us either but the kids will do them once in awhile as part of a relaxing bath. It's not part of our "regimen". Benadryl has an "activating" effect on my kids. Ibuprofen helps my son but not my daughter. I tend to only use it during bad episodes to help with inflammation/Pandas behaviors - esp. the silliness/impulse control stuff. It isn't part of our detox protocol. We have used glutathione and DS felt it helped, but it got crowded out of the budget as we added other things. When DS had a rough time detoxing from tindamax, his tics, which had been gone for 18 mos, came back in a big way. That's what ultimately led us to look at detox issues, the gene testing, and how we found the KPU/zinc deficiency. Once we treated for that, the detox pathway greatly improved and these other detox things worked much better. So if it were me, I'd add in milk thistle for the liver (if not allergic to ragweed), charcoal or clay as a binder and magnesium for regularity (the last two away from abx). You are probably seeing a herx and this can last for several weeks regardless of genetics. But I'd still add the detox stuff now to help capture/eliminate the toxins. If you still don't see improvement in a few weeks, consider testing HLA-DR, MTHFR and KPU. Sometimes, in a bad herx, people take an abx holiday and either cut back or stop abx for 3-5 days to give the body a chance to detox without killing more stuff and clogging more toxins into the pipeline. But that's something to run by your LLMD.

Same here. Check both KPU and HPL, $70 total (includes to prepaid FedEx label - if you pay for shipment yourself, I think the test is $55 or $60 but call them to confirm).

I don't have any experience with either of these, so was hoping someone else would chime in. What are you doing for detox? What, if any, additional supplements are you using? Have you ever used magnesium for tics?

PM me your email and I'll get it to you. As far as I know, this is the preferred lab.

Sent you my scanned instructions...

When you treat KPU for any length of time, say after 4 mos, you need to test copper levels periodically. Zinc and copper are ying/yang the same way calcium/magnesium are. The high zinc supplement will eventually cause copper to drop too low and you end up needing to supplement both. DD had high copper levels prior to starting KPU treatment. As we increase her zinc, her copper is "naturally" chelating, causing bi-polarish rapid mood swings - mania, depression, anger, meanness, intense perfectionism - all in the span of a half hour. We backed off the zinc temporarily and the mood issues got much better. But we will eventually need to push through. A supplement or multi-vitamin that had high copper would not be a good thing for someone with KPU, especially early on.

Positive Borrelia burgdorferi serology secondary to intravenous immunoglobulin therapy Katherine Murray, Kristjan O. Helgason Journal of Infection - January 2012 (Vol. 64, Issue 1, Pages 117-118, DOI: 10.1016/j.jinf.2011.10.004) Got this thru my Elvesier email alert but no abstract available.

Some of these very things were said at our house last night - not by DS, who remains reeally good - but by DD, who is dealing with "issues". Thanks for the smiles!

Oh how heart breaking! I had so hoped things had turned around. You and your family remain in my thoughts and prayers.

According to this study, http://cid.oxfordjournals.org/content/47/6/804.longthe synthetic version of artemisinin is pretty effective against EBV et al. The real deal is apparently less so, but I would think with the same "bridging" mechanism, it would still work - perhaps just more slowly. DD just tested positive for recent EBV and CMV, old HHV6. We are supposed to start an artemisinin/edta capsule next week. The EBV is interfering with DDs ability to go to school or put in a whole day. Hoping this helps. LLMD did not mention pulsing.

I respect Dr Mercola and I do think antibiotics should be administered thoughtfully. However, the study references infancy - and specifically the first 20 days of life (implying a health benefit of breast feeding). Most of our kids are school aged. The other thing that isn't addressed in this article is the recent finding that there are at least three "types" of guts http://www.nytimes.com/2011/04/21/science/21gut.html, suggesting a predisposition to an ecosystem. I think the importance of gut to overall health can't be overemphasized. But I have to agree with Nancy and Vickie - one the scales of abx risk and neuropsych trauma, I come down on the side of abx risks. I do hope to get to a point where we can leave them behind, but we're not there yet. And I'm pretty sure Dr Mercola would have no problem supporting the use of long term abx to battle childhood lyme disease, which he used to do when he was in practice. LaurenK - I don't think any issue is black and white and I respect your reservations. I once had them too. But having lived on the other side of the tracks for far too long, I fear the return of pyschosis far more than antibiotics. It is also worth noting that some researchers looking into methylation question whether the switch on a gene can only be flipped on or off once in a lifetime. There are no answers to that question yet, but many things we give our kids have the potential to alter their gene expression. Did you know that high fructose corn syrup may contain mercury, depending on where/how one of the ingredients is manufactured? http://www.washingtonpost.com/wp-dyn/content/article/2009/01/26/AR2009012601831.html Our kids are exposed to dangerous things every day. For me, the damage Pandas/lyme did to my family and my son's cognitive development was far greater than a potential risk of antibiotics. But I do respect your concerns and appreciate the article as a reminder to keep pushing for overall health so one day we can get off the abx.