LNN

My DS was completely negative on a standard CDC WB. He had 5 bands on Igenex - bands 31, 34 and 39 - which are highly specific to lyme but are not measured on a CDC WB. The negative your DS rec'd shouldn't be relied on, especially if he has classic symptoms. PLEASE read Cure Unknown by Pamela Weintraub, or if your reading time is restricted, at least read this: http://www.astralgia.com/pdf/EL_Lyme.pdf which is a 7 page "cliff notes" version of her story I am not trying to diagnose your son. But I do urge you to test with Igenex and/or see an LLMD.

Some neuro-lyme symptoms overlap Pandas symptoms. Some parents who initially thought we were only dealing with Pandas later found tick illnesses when our kids didn't see remission from Pandas the way we expected. So lyme, on the ACN forums, became a big co-morbid illness. As a result, ACN created a separate forum for lyme. It's probably the only lyme forum anywhere where the majority of families are also dealing with pandas. The lyme community overall has probably never heard of Pandas. For us, our kids probably contracted lyme first (we live in a lyme endemic state) and we pulled ticks off their scalps four months before we had a strep-triggered Pandas episode. Most likely, the untreated lyme was overloading the immune system and when strep came along, it triggered an autoimmune response. But after we aggressively treated Pandas, DS would only stay in remission for about 1-2 months, and would have issues even without strep (we blamed exposure to strep, which it wasn't). That's when we found the lyme, three years after the tick bite. It wasn't so much that my Pandas kid suddenly got lyme. It was that his mother suddenly "got" an awareness of lyme, which had been there all along.

You can see views of rashes here: http://www.drjoneskids.org/ scroll down to the rashes link If your doctor even suspects it could be lyme, you should immediately get your daughter on a month of antibiotics. A month of prevention could save you from years of chronic infection. You don't "watch" a lyme rash.

I know Nancy will have a lot more to add to this - don't want to steal her thunder (and don't know near as much as her on this). But here is the article by Murphy and Storch that the forum members generally refer to when we use the term "activating": http://www.primarypsychiatry.com/aspx/article_pf.aspx?articleid=561 Abstract: Although selective serotonin reuptake inhibitors (SSRI) are an effective and commonly used treatment for pediatric obsessive-compulsive disorder (OCD), their use has come under close scrutiny following reports of adverse reactions. The authors of this case report believe that children with the OCD subtype, pediatric autoimmune neuropsychiatric disorders associated with streptococcus (PANDAS), may have increased vulnerability. The following report provides initial data on behavioral activation following SSRI use in 38 children with OCD of the PANDAS subtype. The authors use a particular case to highlight this issue and discuss treatment implications. The jist is that Pandas kids only need a small SSRI dose to do what a "normal" dose will do in a "traditional" OCD kid. When you give a "normal" dose to a Pandas kids, they react in the opposite way you'd expect because you're actually giving too much. Just a smidge will do ya.

You already know enough about Pandas to use your judgment in that regard. So I will only address the other things it could be, based on personal experience, not meant to be a comprehensive list... (Neither of my kids have elevated strep titers, including my son who had two extreme episodes within days of strep. Either we tested too far out past his rise or he doesn't get a rise. No way to tell. Both kids had elevated CamK II in the 180 range, DS has Pandas, lyme and possibly pyroleuria, DD has never had strep, may have lyme but we're still investigating - don't feel we've uncovered the whole picture.) Things that can cause pandas-like episodes - separately or in conjunction with other illnesses: mycoplasma lyme (or co-infections like bartonella et al) celiacs yeast mold pyroleuria with or without involvement of heavy metals (search KPU threads on the lyme forum) I know others can chime in with the things I've forgotten. It's possible it's the result of the strep infection (Pandas) and you just missed the window to catch rising titers. Or maybe she doesn't make very high titers. But these are the other things we've had to investigate and just meant as food for thought. Given that meltdowns are a big issue and may be a bigger deal than the OCD, it may be worth doing a little reading up, just to make sure something else doesn't resonate. I also highly recommend CBT and ERP to weather the storm regardless of cause.

I'm glad you have a doctor who is willing to support you. Despite the scary diagnosis, it must feel good to finally have someone willing to investigate and treat instead of telling you your kids are fine. Hopefully, the labs will support the clinical and give you guidance on next steps. Congratulations on your perseverance!

Wow - all I can say - wow! Good for you for insisting on the labs! I hope she gets treatment and you see goodness soon!

Ok, that's one HUGE bottle of supplements! I do hope it gives you some answers and not just more questions. Keeping you in my thoughts

My DS9 was completely negative on standard CDC WB - including 41, both IgG and IgM On Igenex, he was positive on 31, 34 and 39, some on IgM and some IgG So only you can decide on whether Igenex is the next step, but I can tell you that you get different information/bands from Igenex than you do from Labcorp. But I suppose you already knew that. Under Helpful Threads, there are a few articles that talk about what each band can indicate. If you're trying to rationalize spending the money on Igenex, I can tell you that after we submitted our claim, insurance reimbursed us about 60% - and if you test more than one family member at the same time, they give you a 15% discount. So we were out of pocket for about the cost of a big bottle of supplements. And I know you know all about that!

We see an LLMD about 40 min north of Dr J in the Hartford area. I will PM you.

Poking around on Pam's website, I found this: http://www.cureunknown.com/ Go to the link "related Article" and read the 2009 article What We Don't Know About Lyme - a cliff notes summary of Cure Unknown and a lite version of the answer to your question.

Due to the schism in lyme, you find CDC and IDSA on one side and ILADS on the other. The best comprehensive explanation for the schism can be found by reading Cure Unknown by Pamela Weintraub. I highly recommend the book as a must read to understand lyme and the landscape.

Three years ago, he was debilitated by anxiety and no therapist could help him. His daycare provider once used the word "sociopath". He had no impulse control, and at his worst, we called him "Linda Blair". He curled up under the coffee table in fear and rage. He had severe motor and vocal tics, moderate OCD that interfered with school performance (tho he could attend school). He could barely hold a pencil and his teacher suspected asperger's. He was 6 months below grade level. Today, he is at grade level, he has no anxiety, is OCD-free 99.5% of the time (and is sub-clinical for the other 0.5% - no one sees it but him and me and on a YBOCS scale would be below 10 even on a bad day when he was once high 20s), went 18 months without tics (which returned when we started tindamax but resolved when we stopped - probably herx related). He uses CBT very effectively for anger management. His biggest remaining issue is brain fog, which is why we're looking into pyroleuria/KPU, since he developed tardive dyskenesia when he took zicam for a cold - so very weird reaction to zinc). When we first started bartonella treatment last fall, his reading jumped 7 levels while his peers jumped 4 levels (thus, he caught up and no longer requires tutoring). His reading fluency jumped from 67 wpm to 140+ wpm (but declined to 104 wpm when he had his bad herx/return of tics). He still has things to work on. We haven't reached the finish line. Brain fog continues to rear its ugly head far too often. But I'll take "mom, I don't feel right" over "I can't come out from under the coffee table" any day. I don't just credit lyme treatment. We've done abx and prednisone for Pandas, pheresis, IVIG, bartonella treatment, lyme treatment, detox, CBT and ERP therapy, tutoring...and there's also the benefit of maturity. He was 5 when this started and is almost 9. No single thing was the magic bullet. It's a cumulative thing and we continue to work toward a goal of being abx free and healthy. There's more pain ahead, I'm absolutely certain. I'll be here next month with a knot in my stomach, questioning and needing support. I don't claim to have answers for anyone else. I just know most of what we've tried has helped for our situation (my one exception is IVIG, which was a very bad experience and puts me in the minority). My 6yo daughter also has health challenges, more with intrusive thoughts and gastro. Her path is less clear but also less severe. So I talk about it less often. We're still trying to figure her out.

I think for at least some of us here, there is more than lyme at play. Thus, the threads about KPU and mold and other insults. For me, it's a matter of lightening the load until my son's own body can support itself. It means killing stuff, clearing stuff with detox and making his own systems stronger. It may never mean having a squeaky clean system. Just one that can function well. I don't believe the problem is solely inter-cellular. I think it's way too complex for just one thing to be at play. And highly individual. I think the "proof is in the pudding" and when a family finds something that works, then they need to pursue it and share the ideas with others. But it doesn't mean it's "the" answer for everyone. Not everyone who comes here will find their "aha" moment. Lyme treatment can be unpleasant. No question. So is training for a marathon, studying for a state board exams, rehabilitating from a serious injury...what makes lyme treatment right for some is that little by little, you get to a better place. But everyone needs to find their own lock and key. And for some, it's more than one lock. It's more like those Russian dolls that nest inside one another. We crack open one doll only to find another. But I do see big changes from where we were three years ago. So we keep cracking...

I'm so sorry he's having to battle this again. I know IVIG is a huge decision, especially for little ones. Before you go there, I'd only ask you to closely look at anything - anything - that might have changed since last year. You say he's been stuffy and you thought it might be allergies. Have you had any issues in the house with humidity, water leaks, anything that could have kicked up mold or allergens (changing a carpet, remodeling?). Have he had a nasal swab to check for infection? Have you checked blood work recently for strep titers, immune complexes (specifically C3d, C3a and C4a)? I think you son's behaviors show there's still something at work but how you treat it should be guided by knowing what's happening in the body. It may be worth getting a look under the hood before mapping out next steps. In the meantime, you may want to do some reading on cognitive behavior therapy and ERP techniques for young kids. Or search on old posts on the topic. CBT is an amazing tool for coping with meltdowns. It's a life saver in my family. (you might also want to keep some liquid motrin in your purse - it's a big help for my kids) Wishing you better days ahead.

We too have a second, less symptomatic kid. While it's exhausting and financially draining, the second one does benefit from all that you already know and since they're generally healthier, it's not as bad. Plus, as everyone starts to get better, it's a relief to see the family dynamics improve and feel like you're moving together in the right direction. At first, it was like getting punched in the stomach. But now, it feels like we're dodging a second bullet. Just remember to talk about it with both kids. Mine seem to benefit from knowing what's happening and why they have to take so many pills and they seem to find empathy for each other now that they know they have the same challenges.

No, I don't think chronic lyme is just an autoimmune disease. I think (personal opinion) that it's an active infection that's above a certain threshold. I suspect lots of people walk around with low levels of lyme and co-exist, without major symptoms, or clear it entirely. But when the lyme reaches a certain volume, and the body can't keep it in check, it becomes something you need to beat back down. Maybe never eradicate, but get back a bearable level. I think the video Wendy posted helps explain how it can also become autoimmune, but my personal thought is that if you can beat the stuff down to a minimal level, the autoimmunity piece becomes negligible or non-existent. I don't think neuro lyme is simply autoimmunity. But I do think it's a very strong reaction to inflammation that's messing up the brain chemistry. Maybe that inflammation is due to an autoimmune reaction within the basal ganglia or maybe it's due to an active infection within the brain or CNS. I'm not sure there's any way of knowing without putting my DS's brain under a microscope. So for now, I'll do what I can to kill bacteria, support his own immune system, help his body clear toxins and reduce inflammation. My thinking may change as time goes on, but that's where I'm at at this point in the journey. There's one other point I want to raise, and I ask this with no agenda. I'm not suggesting you have lyme (tho I do hope if your symptoms continue, you consider ruling it out). But in your comments about an on-going intercellular infection, you make an assumption that auto-antibodies must be behind your episodes. At one time, I would have agreed with your thinking. But having seen my own son's journey, maybe you want to re-assess that assumption. Could the first part of your statement be correct "there must be some sort of microbe" but the second part be wrong that "it's pushing auto-antibody production." What if auto-antibodies aren't the problem. What if an active infection from something other than strep is at play in your body? Again, I'm not trying to diagnose you or argue or push an agenda. It's just meant as a question to ask yourself because I "wasted" time trying to fight a battle only on one front (Pandas/strep) only to find out there was a second front and a second enemy (lyme et al) that had made gains while I was fighting the first war. You might be entirely correct and I know you've seen the top names in the Pandas field. We've worked with many of them at various times and they were all helpful in their own way. But due to their specialization, none of them looked beyond strep. My own assumptions were one of the roadblocks my son had to overcome. So I just ask because when you let go of what you think you know, the ballgame sometimes changes. Just food for thought.

Why, it takes no time at all. It's just that finding the mind you've already lost takes some time. But once you find that, wrapping the rest of the head around it is pretty easy.

Yes, three forms of lyme is my understanding as well. Extracellular abx tend to work on spirochetes, tindamax and flagyl work on cyst forms and intracellular abx like zith, bactrim work on l-form. It's one reason behind using combos of abx for treatment. if you only use extracellular abx, the lyme goes into cyst until you stop that abx then comes out of hiding. The combos are meant to attack the various forms simultaneously. But there are also biofilms, which are extremely hard to fight even with absurd amounts of abx. I have read in various places about evidence of spirochetes being in brain tissue as well as spinal fluid (the stories in Cure Unknown of the Alzheimers and ALS patients for example). So nothing says it can't be an actual infection of brain tissue. But it could also be inflammation triggered by the infection or triggered by autoimmunity. Heck, they can't even develop reliable tests for the disease, let alone tests to tell what else is going on. Pandas16 - I'm not familiar with the thought that Pandas is a result of a chronic l-form of strep. Rather, I understood it as an autoimmune response to GABHS that can continue for a time after the actual strep is eradicated, due to an unregulated or under-regulated cytokine response. If L-form bacteria were suspected as a culprit, my understanding is that augmentin and other extracellular abx wouldn't be effective, since they work on the outer surface of the bacteria, which doesn't exist in an L-form bacteria. Do you have a different understanding?

You know how Dr K once had a description of the Pandas mom - Type A, good in math...sort of pushy and anal-retentive (he found a way to say that nicely)...well..I have a description of the Pandas/lyme mom and one of the key criteria is that you have a melt down/nervous breakdown at the time of diagnosis. By the time most of us have gotten to this forum, we're exhausted, broke and jaded. So a few good cries are a good starting point. I can't say I'm happy to be here, but there are a few "good" things about tick-borne dxs. First, you get to stop being paranoid about strep. You can let your kids go to jump zone and touch public door knobs and not banish the best friend who has a scratchy throat. Second, you can tell people your kids have "lyme" and you get nods of understanding (they don't really understand but it's not that queer look that you've gone crazy that you get when you say the word Pandas). Third, there are more LLMDs than there are Pandas doctors and you might not have to stay in a hotel every time you have an appt. with one. The bad news of course is that it's just as controversial, just as misunderstood and the doctors don't take insurance, so it can be just as if not more expensive. No one can tell you how long it may take to get your kids well. Some treat and see quick results. Some take longer. Some get better and better. Some plateau and need to look at additional causes (vitamin/mineral deficiencies known as KPU or pyroleuria), mold exposure, heavy metal toxicity, additional infections.... So no easy answer for what you may or may not face. But, I can say that despite the setbacks we've had since starting lyme treatment last fall (and pursuing Pandas treatments for 2 years prior to that), my kids are better. Not cured, not on a fast track, but certainly much better. I know there will be tough times ahead and I dread them. But at the end of each rough spot, there is goodness. As for herxes, they're as unique as the individual. We had a few mild ones and a few serious ones. You deal. You learn. You move forward. There are things you can do to lessen the severity and prepare your body. You can back off of treatment if things get too bad. Try not to freak over the prospect. It's like child birth. It might be a necessary process, but it doesn't have to be horribly painful and even if it is, it's rarely so painful that you stop having kids after your first. You deal. Then you feel better. One final thought - when this forum started last year, there were only a few people. Over the past 6-8 months, more people have joined and the group's knowledge has expanded. So there's less you have to discover the hard way and perhaps your journey will be a little shorter. So have a good cry but know it gets better once you wrap your head around it.

Like your DD9, DS8 hasn't yet recovered from being off everything. He's been back on schedule since Sunday, but still not himself. We stopped everything except abx and probiotics, for what turned out to be two weeks. Stopped glutathione, vitamins, milk thistle, charcoal and no motrin. One night, after about 5 days, DS was near tears, begging to go back on everything because he felt awful. His OCD mildly returned, muscle pain, feeling "off", foggy, hard to find words, sort of dazed and subdued, but then would have bursts of uncontrolled, age-regressive silliness (which goes away within 20 min of motrin). So the "good" news is that something we're spending $$$ on is helping. Since resuming things, the silliness has subsided, the OCD seems to be lessening. But the muscle pain and fog is still bad. I'm trying not to jump to conclusions about what any of it means. I just know it's significant, but not sure in what way yet.

We just sent our KPU sample in yesterday and I wanted to pass along a few tips for anyone about to do the test. When we did the test last week, I put the urine sample into the bubble wrap pouch and Fed Ex bio bag provided by the lab. Dropped it off at Fed Ex and looked forward to putting DS back on vitamins and supplements, since he was struggling while being off of them the week prior to the test. The next morning, Fed ex returned my sample, saying the bubble wrap pouch needed to be in a sturdy cardboard box, per government guidelines. ??? I called the lab and they said they'd never had any problems with any other shipments. But for what it's worth, save yourself some grief and get a $1.25 cardboard mailer that fits into the FedEx bio bag that comes with the test kit. It s*cked to have to stop vitamins/supplements again to re-do the test. Also, if you want to do the collection over a weekend, per the lab, you can freeze the sample for up to 4 days. The name of the lab has changed from Vitamin Diagnostics to Health Diagnostics and Research Institute and payment for the test should be made out to the new name. The test is either $70 if you use their fedEx account number and have FedEx charge them, or $55 if you pay for the FedEx shipment yourself. In hindsight, it would have saved me $4 to pay for it myself. So just FYI. Now we wait for results, which apparently take 3-4 weeks. But didn't want someone else to wake up on the morning after to find a bottle of pee on their door step

Peg, There are several complex systems that get mentioned in Pandas/lyme. I first learned about C3D from Dr B, who seems to test for it as a general marker for an active infection (doesn't indicate what that infection might be, but I've seen RA commonly mentioned when I googled.) C3a is a complex that's often activated in early lyme but sometimes dampened back down to normal levels in chronic lyme. C4a is a complex that can indicate lyme or mold as a trigger and probably some other things as well. I have a very crude understanding of complexes - they seem to be keys for my kids - both have high C3d levels, one also has high C3a and the other also has high C4a. So measuring the complexes is something I've tried to learn about, but it's way over my head. I suppose it's possible that complexes introduced or activated by IVIG could cause some sort of joint problems. But my rudimentary understanding is that complexes should drop over time (weeks? months?) and if it's still a problem 4 months later, something doesn't seem right. Is he measuring complexes to run this theory to ground? If so, which complexes is he measuring? If not, I'd push him to investigate. Perhaps measure all three of these complexes (and if any are high, measure over the course of time). I think it's also possible that if caused by complexes, the RA your daughter has could be innate rather than from IVIG introduced complexes, which would make me question whether there's an ongoing infection of some sort. You've said in the past that rifampin (I think?) is very effective for your daughter. Ask yourself what infections are particularly susceptible to this abx. Maybe the theory that immune complexes are responsible for the RA is correct but maybe the assumption that strep is the culprit isn't. I am NOT trying to toot the lyme horn here. You've been here long enough to have heard the whole lyme discussion and you're enough of a savvy advocate that I absolutely don't want to come across with a "gee, have you considered lyme" comment. I'm only trying to toss out a few ideas about what can make complexes rise or cause problems aside from IVIG. I just lost so much time ignoring or explaining away clues that didn't fit my or my doctor's ideas of what was wrong. In hindsight, they all meant something. If you have the energy, I'd keep pushing for answers on this one. RA is not supposed to be a side effect of IVIG. Laura

Check with Quest and make sure they'll send the sample to Specialty Labs. I don't think you can any 'ol quest lab - but our LLMD sent the sample out. We did the draw in his office. So not really sure how it all works.

We tested for lyme with Igenex but used Specialty Labs (now a division of Quest, I think) for bartonella. Specialty accepts insurance and our LLMD didn't think babesia or erlichiosis was part of our picture, so no need to do a full blown co-infection panel with Igenex for $$$. My son had an asymmetrical swollen gland (only on the left side of his neck) for two years - no doctor could figure out why. Turns out to be a very classic bartonella symptom.