LNN

I have spent a little time looking into it. We banked DS's cord blood. But I couldn't find anyone doing research on anything like Pandas. The money is going into those diseases where there's a big bang for the buck. The research is expensive and is only going to go into areas where lots of patients can be helped (and charged for therapeutic treatments). Not being cynical. It's just something that has to have a payoff, both in profit and in human impact. Without knowing "the" cause and what they're trying to "fix" no one is yet willing to throw darts - especially in a generally pediatric population.

Holy Cow! That was powerful!! I've read this scenario before (guy thinking he's hit someone, has to turn around and check many many times even at the cost of being late to a hugely important meeting). But to see it painted like this...this was awesome. Thanks Denise!

Like :D :D :D :D !!!!!

S, You already know as much as the rest of us on how to interpret the bands, the ambiguity you're going to get from the EBV, the reasons why something can be IND. You know 31, 34 and 39 are significant and taken as a group and with her symptoms, paint a suggestive argument. So...why be afraid? Yes, I know. 1st grade is days away. You don't want her childhood taken away from her. But...the infection, if it's there, has already occurred. You know you're dealing with metals. The awareness of lyme prior to any chelation is something you should be patting yourself on the back about. You could never have prevented the tiny tick bite. But ever since, you've been devoted to getting her well, living on forums to be a detective and support your daughter in the way no physician has. You have found puzzle pieces while she's still young, still able to re-gain whatever she's struggled with. You know it will be a hard road. But finding the needle(s) in the haystack is the only way to reach your destination. Try not to be afraid. You know I had what I affectionately call my "breakdown" after our lyme dx. As we end an awesome summer and quickly slide into the murkiness of KPU, I totally get that "I want to run away and throw up - maybe not in that order" feeling. But you won't be alone. And your daughter will have the best shot at getting healthy that she's ever had so far. Yes, there may be other things that get uncovered. Maybe it won't be "the" answer. But it's sort of like going into labor without an epidural. Yes, the pain that lies ahead may be terrifying and your worst nightmare. But the only way to get to the other side is to go thru the process. No going backward or crossing your legs. And remember, just like with child birth, your mind will eventually forget the worst of the pain once you get to healthy. It's nature's way of making sure we all don't stop at the first kid - or the first herx. L

I just found this on wikipedia: Too much phosphate can ... interfere with the body's ability to use iron, calcium, magnesium, and zinc.[48] Since this is what the KPU test is all about, you may want to talk with one of the lab technicians at Vitamin Diagnostics or your homeopath. Sorry to contradict what I posted earlier, but perhaps the phosphorus is closer to the vitamin/mineral category they want you to avoid than I initially thought. I'd check with someone knowledgeable.

I can't really answer that. I guess it depends on how much you feel it's "essential". I chose not to give any supplements (other than probiotics) just to be conservative. What I found was that all the stuff we give does actually help, as DS was feeling the difference and really wanted to start taking all those pills again when the test was over. But nothing he took aside from the abx/probiotics was "essential" - more that the supplements help reduce his symptoms and support his body. I wouldn't think curcumin would influence the test, as you could eat a diet rich in curcumin and they don't tell you to change your diet. But if it's something you think he could go without for 5 days, then personally, I'd probably go without. But that's me. I don't know anything about the phosphorus. But would use the same criteria. If essential, keep it. If not, try to go without for a few days. JMO.

No - did not stop probiotics or abx. Did stop detox stuff like glutathione and milk thistle, tho may not have needed to. But I didn't want anything "non-essential" influencing the results. Probably extra cautious on my part. The important thing is to stop the vitamins and minerals. As for stress - we did the test the first week in July. I figured swimming and running around was a kind of stress. We got a positive result without any induced stress.

You can call them and confirm, but I was assured by our LLMD that being on antibiotics is fine. You need to be off of supplements - particularly things like vitamins, mineral supplements, etc. I tend toward the conservative, so we stopped all supplements for a week but stayed on abx. The woman I spoke with was very helpful. A little hard to understand, but very willing to help.

Jill, I'm sorry you're in this spot. You must be so on edge. Tissues are on the way. Thankfully, I'm sure you'll have additional tools once you speak with Dr B. and the wild party will be squashed. If brain fog becomes an issue and you want some ideas on detox stuff, give me a shout. But here's hoping this episode will be short-lived! Laura

I'm so so sorry to read your post. No child should have to go through what your son's going through. First, PM TPotter - she's doing IV Abx for one of her sons. She's in your general neck of the woods (or at least of your LLMD). Second, I know your LLMD has a respected reputation. But it sounds like you're not getting the support you need. Are you supposed to just ride it out while your son begs you for help? No detox advice? No guidance on backing down on anything? Did you discuss an abx holiday? Taking a little time off to let things calm down? Third, I don't have enough knowledge about all of the supplements, but is it possible that some of them are contributing to the problem? Has he been on all these supplements for awhile? When he was 80%? I thought inositol and 5HTP acted in a similar manner. Could they be too much together? Are the doses of vitamin supplements based on blood work? Could toxicity be at play? It seems like a lot of supplements and not much in there for detox. With all the things you have going into the body, it seems like you may benefit from someone who can guide you with detox and supplements. In the meantime, I might call your LLMD tomorrow and ask about a treatment holiday for 4-7 days to see what happens. Personally, I think you made the right decision to not go to the ER. You could end up with more doctors adding more stuff without understanding or believing in your diagnosis and you could potentially lose control of the situation. However, should your son ever get to a point where you feel he's in real danger of harming himself, that would be a different story. I hope you're able to get medical support quickly.

I know I won't be the only one who tells you this - but the first thing you have to do is not beat yourself up. I totally get how you feel. I've been on this road "officially" for 3 years but have been questioning signs and symptoms for much longer. But try to keep things in perspective. You have a tricky situation because not all of your son's symptoms are slam-dunk Pandas. You have to always sort out what's age-related vs. illness-related. So it's not fair to expect that you should know when it's time to be aggressive when you have more to sift thru than those with older kids who can communicate and have perspective on what they're feeling. You are doing what all of us try to do - find the most beneficial protocol balanced with the least amount of risk. While your son may be "losing" a "normal" childhood, he's also gaining special gifts thru CBT and the relationship you're forging with him. My son "lost" 1st grade thru 3rd grade and as he starts 4th grade, I brace myself for what the new year may bring. But each year, we've gotten him healthier even as our medical path has gotten wackier. He's catching up academically and I find that he now has gifts his peers don't, such as the ability to articulate his feelings, recognize and deal with anxiety, understand what makes other kids tick... I think the best thing you can do is take a few days away from the forum and do a gut check. Sometimes, being on here can make you feel guilty if you're not doing "everything possible" and you see posts about abx and IVIG and this test and that...and you can get caught in a little "keeping up with the Joneses". I pressured myself into doing IVIG even tho I had many mis-givings, because it felt like if I didn't try it, I would somehow be robbing my son of every opportunity to get well. It wasn't the right treatment for us. You have to remember that your child and situation is unique. This is a buffet table where you can learn about a lot of things. But not everything will apply to your child. Try to get a good night's sleep and give yourself permission to not know what to do next. Listen to your gut and cherish your son. The rest will come in time. There's no magic deadline, no expiration date on options. Be kind to yourself - it's the best way to take care of your family.

S- You'll like this article.... http://naturalnutmeg.com/?p=1000 It has a section on symptoms in children that will hit home for many here. Laura

I think yeast can trigger elevated CamK. I know CamK can come from some kinds of gut inflammation. I'm just not certain about yeast can cause the kind of inflammation that results in CamK. I was only trying to list other infections that can cause inflammatory responses. Not suggesting all these things are Pandas triggers. I get myself tied in knots quickly when I got into this sort of discussion. A little knowledge is a dangerous thing. My son was recently tested for kyrptopyroleuria (KPU), which is not a lack of zinc/B6 but rather a defect in the way the blood is synthesized to utilize zinc/B6. As I understand it, you can test blood zinc levels and not see a deficiency, but the body is using the available zinc inefficiently. So you need to mega-supplement. (Think of a guy in one of those cylinders where a cyclone of wind is swirling money around and the guy gets to keep all the money he can grab. There could be millions of dollars in the cylinder but the guy only walks away with a few hundred dollars because he can't grab enough of the stuff he's surrounded by. Measure the cylinder and the answer is there's plenty of money. Measure the amount utilized and you get a different picture). KPU is a urine test. You can read more on the lyme forum or in this paper http://betterhealthguy.com/joomla/images/stories/PDF/kpu_klinghardt_explore_18-6.pdf There are two possible things that could happen as we start KPU treatment today (aside from nothing happening at all). DS could just be zinc/B6 deficient and by giving him supplements, his body and immune system could be energized like taking a drink on a really hot day. Then his now fueled immune system could start fighting lyme more efficiently. Or..his body may have been trying to utilize heavy metals as a poor substitute for zinc, in which case the addition of zinc/B6 could cause his body to drop/chelate the heavy metals as it starts to grab onto the good stuff, in which case it could be a rough spell. The goal in the end would be to have a better functioning immune system to go after the antigen. It is not my understanding that KPU or pyrroleuria cause inflammation in and of itself, but rather that it hinders the immune system, which, in the presence of an infection, would presumably cause increased inflammation. But I'm an art major, not a science geek and I only learn enough to make things make sense in my head. It's very possible that when I connect dots, I miss a few or get a less than complete picture. Always take what I post with a grain of salt. Likewise, KPU and pyrroleuria and the above implications are not embraced by the general medical community. You can google "mauve factor" and find some research but most of it's linked to schizophrenia and is about 30 yrs old. This is one of those gray zones where you take a leap of faith and look for proof in the pudding. We'll do supplements for a few months and see what happens. It makes sense to me, but I can't show you a lot of research to back it up. if anyone has any, I'd love some links!

I will totally screw this up, but in very basic terms, my understanding is that regardless of what causes autoimmunity - in lupus, Pandas, RA - that once you have a tendency for an autoimmune reaction, what triggers a flair or episode is inflammation. CamK is a protein that is like the flashing blue light in K-Mart (I am seriously dating myself here). The flashing blue light goes off and shoppers flock to the display to see what the blue light special is. Similarly, CamK II signals/reinforces inflammation and calls antibodies (and/or autoantibodies) to the scene. If you treat the infection, there are regulatory T Cells (the store manager)that eventually call the dogs off and in the process, suppress CamK (dim and then unplug the blue light and the crowd disperses). So that's why you need to treat the infection. I think I'm on solid ground so far. In diseases like lupus or RA, where the root cause of a flair is unknown, all you can do is treat the symptoms. You take prednisone, which turns off the blue light (inflammation proteins). This allows the auto-antibody crowd to disperse and the flair downgrades and subsides - until the next trigger, whatever that may be. In Pandas, we think we know what the root cause/trigger is - strep. If you eradicate the strep infection, eventually CamK II production slows down and the body stops creating more and more auto-antibodies. Things eventually regulate again (anecdotally from research papers - 6-8 weeks post-infection eradication). Yes, the basal ganglia is still there as a potential "antigen" but my understanding is that if there's no other antigen in the body that's causing CamK to be super-produced, things calm down. (The BBB also plays a role, but I don't understand it or anti-neuronals well enough to attempt to discuss). So for those whose kids never return to baseline, assuming auto-immunity and/or inflammation is at play, you have to ask why things aren't calming down. The Pandas auto-immunity reaction as I understand it isn't like a nuclear reaction that will go on perpetually without an on-going catalyst (may be different for other autoimmune diseases - I'm not well read on this). As I understand Pandas/CamK, something is still keeping inflammation markers elevated and you need to keep searching for the antigen. Lyme, myco, parasites, yeast, mono, viruses - could all be potential culprits. The lion will roar until you remove the thorn from his paw. Our LLMD believes that if you remove the thorn (and resulting inflammation), my son's auto-immune issues will resolve. That he may not have true auto-immunity. Rather, we're seeing a perpetual response to neuro-inflammation and if we eradicate the lyme and support the body, everything may resolve. I don't think anything is well known at this point. There are several inflammation markers we've tested for my kids - C3a, C4a and C3d immune complexes, MSH (melanocyte stimulating hormone), CamKII - and when all continued to be elevated, we knew that an infection was still at play, beyond strep. For my Pandas son (CamK 183), this led to lyme and pyroleuria. For my daughter (CamK 178 - no strep), we are still trying to find that needle in a haystack root cause while we manage her symptoms. I know others have a much better grasp and maybe they'll add to or correct my analogies.

I was also going to suggest emailing a video. You may also want to ask her about testing mineral levels. My DS has previously had very odd movement reactions to Zicam (zinc) and tamiflu. After 3 yrs of peeling things away, we've discovered a zinc/B6 deficiency and will begin supplements this weekend. Zinc is crucial to the immune system. She may dismiss it, but it's worth asking. We also discovered a copper deficiency (which is weird because zinc and copper are usually ying/yang so odd to have both be deficient. But copper is also involved in dopamine/epinephrine/norepinephrine synthesis. We started adding copper last week under doctor's guidance and have seen subtle but welcome changes). So a mineral workup may be helpful (maybe do a blood draw to check strep titers and check minerals at the same time). Prednisone tapers were extremely helpful for my DS, despite his subsequent lyme dx, but it helped his OCD, ADHD and dysgraphia much more than it helped with tics.

Hi Alex! FWIW, my DS had a T&A 10 months into things, a month prior to Pex in '09. It helped him greatly. He hasn't had an issue with strep since. (of course, he's also been on a slew of abx and as you know, we now have the lyme battle going on, but no regrets on the T&A). With all you've been thru, I think you're right to give it a shot. It may not be "the" magic key, but I doubt it could hurt and the upside for your guy could be huge. Please keep us posted! Laura (BTW - Dr C has emailed a few members saying that she realizes lyme can cause elevated CamK. Certain M proteins on the outer surface of certain strains of GABHS are very similar to certain proteins/strains of borrelia. Kissing cousins. She published a paper about a decade ago on lyme autoimmunity tho her focus was on the heart. But similar theory. Your recap of her hypothesis is also my understanding, but my understanding is that she has come to say that CamK elevation isn't unique to strep. I believe more emphasis is put on her anti-neuronal measurements but my grasp of this has gotten rusty.)

Glad you feel like you know what's behind the change. If you end up regular dosing with ibuprofen for a period of time, you may want to read up on using milk thistle. It's a good liver detox and would help protect the liver from a steady dose of ibuprofen. You can PM me for some links or search on the lyme forum for milk thistle threads. Hope the tooth comes out soon!

Neither graph entirely explains our experience, so I voted none of the above. Like Kara, we ended up with something beyond strep that was causing repeated exacerbations. So we looked like Graph B...until we properly treated the issues beyond strep..now you could take the tail of graph A, put it at the end of Graph B and you'd have our picture. Our post-infection rise in baseline lasted 2 yrs but is now dropping back down. It's been 3 yrs in total, but we are finally finally getting to a place where the original baseline is in sight. The start of our life with PANS agrees with the left part of either graph. Sudden, acute symptoms, with the worst of things packed into the initial episode. I'm guessing that how someone's right hand portion of the chart flushes out is highly dependent on whether they received the correct treatment for the correct instigating antigen and how much time after the initial episode passed before the root cause was uncovered and treated. My impression is that Graph A shows PANS (regardless of antigen) properly diagnosed and treated in a timely manner. Graph B shows PANS and the long winding road many travel as a result of incorrect or incomplete diagnoses and treatment. That's my experience anyway. Laura

Ditto Momaine. My DD, who like your daughter, is far less symptomatic than older brother, ramps up once a tooth starts moving. Even tho she's on daily abx (her C3a and C3d immune complexes show she's fighting something, but we're not sure what - it's not strep, maybe lyme, maybe H Pylori) - she spikes in the weeks prior to the tooth falling out. Motrin on a regular 6 hr schedule helps (it's much better than using as-needed, as once things escalate, it's hard to get the horse back in the barn). Our DDS also gives us Peridex - an anti-bacterial rinse used for post-root canals. A day or two after the tooth is lost and the gum closes back up, issues dissipate.

T, My kids take glutathione every morning - best on an empty stomach for absorption but given DS-G's gut issues, I wouldn't stress about that. Go ahead and take with food. Ok to give with abx. But glutathione is more for brain detox than gut detox. You can use activated charcoal (my DS has taken 1200mg at noon - away from abx and probiotics - is about to switch to lots of chlorella for KPU). Or PM Wendy for bentonite clay info. Like charcoal, clay is a sponge and needs to be taken away from abx - but chlorella does not). Would DS-G eat a few saltines before getting out of bed in a.m.? My DD's worst problems are dyspepsia first thing in the morning. GI doc told us to give pepcid at night since it wears off in about 18 hrs and he wanted it working first thing in the a.m. It does help, but her GERD isn't as bad as it is in your house. Two things that have helped DD are Theralac TruFlora (2 weeks every day to kill yeast and then 2x/wk as preventive) and daily BMs. The less full her bowels, the better her GERD seems to be. I'm sure a doctor would roll his/her eyes, but it seems related. Thinking of you - hope there's relief soon! Laura

Yes, my son's tics got worse after pex. Took several weeks before they re-settled. But other things got better during that time - mood, OCD, anxiety..then finally tics went away. We went nearly 18 months without tics after that - until a bad herx from tindamax this past spring. But they too subsided once we stopped tindamax.

I'm so sorry about your Mom. I lost my mom last fall just after finding out about lyme for my son. It can be an awful time trying to handle so much stress from all directions. Prednisone is not good for lyme. But...my son did two month-long tapers in our Pandas days and it helped immensely. So you have to weigh pros and cons, benefits vs. risks. Given all you're dealing with, I'd do what you need to to make things manageable. I assume you'd only be on a short course (10 days?) for the hives and every doctor I've ever seen, including our LLMD, has said short courses don't really suppress the immune system (not that he Rx's steroids, but his take was not to beat myself up about it). I know some will disagree with me. I understand why. But possible lyme isn't the only thing you're dealing with and I think you need to support yourself and your family. I'd make a decision knowing steroids aren't the best thing in the world if you have lyme, but also weighing the other factors. I hope you can get the hives under control and find comfort (physical and emotional) during this difficult time.

Yes, you need a doctor's signature. You can get a test kit sent directly to you from Doctor's Data but then need a doctor to sign the order form. We did the urine heavy metals test. http://www.doctorsdata.com/test_info.asp?id=4FYI - it's a test that requires provocation with a chelating agent. Our LLMD used DMSA - which is an FDA approved chelating agent for children, but requires a doctor to prescribe (i.e. can't be prescribed by a naturopath or non-MD). Also, just be aware that this test has been criticized because it gives results of a post-chelated sample and compares them to a reference range of samples that were non-provoked. Some say "duh - most provoked samples will be higher than non-provoked ranges and lead you to assume you need chelation. The lab should compare apples to apples" Here's the full argument: http://www.quackwatch.org/01QuackeryRelatedTopics/Tests/urine_toxic.html We did the test 4 weeks ago. I spoke with another patient who sees our LLMD and he is apparently now suggesting both a pre and post-chelating test so you can compare results. It's an extra $60 to do a second test, but it seems like a good idea.

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