LNN

You won't be the first mom to uncover lyme in herself after finding it in her kids. You will be like a dog chasing its tail trying to figure out the chicken/egg which came first, Pandas or lyme question. I re-visit it now and again for neurotic entertainment, but ultimately, it doesn't much matter. What matters is whether treatments get all of you to a better place. At the start of the journey, it helps to read up on two issues that are somewhat intertwined...oxidative stress and detox. I think most of us on this forum have found success with various approaches, but the sooner you start understanding it's role and what works for your kids, the easier time they'll have with treatment. I don't have specific advice - we went thru many supplements before settling on what seemed to work best but this seems to be an individual thing and doesn't exist in a bubble. Your diet and habits are also factors. My own lyme experience was way different than my Pandas days. By the time I hit lyme land, I was so utterly exhausted. So I didn't approach it with the same momma-bear vengeance. Good thing. Because while Pandas is a "strike hard and fast" approach, lyme is more of a "gear up for a marathon" experience. So take some time to read up but try not to panic. Because your kids have been at this for so long, you may find layers of issues, not just one smoking gun. Kinda sucks. But the good thing is that as you unravel the layers, the kids get sustainably healthier and it's really gratifying.

Colleen, My personal opinion is that your WB labs aren't going to be a good guide. The test was done too quickly after the bite. I think you have a few options. 1. You can wait a month and do an Igenex test (but you are going to need to find a doctor willing to sign off on it) 2. You can do the new Advanced Labs lyme test http://researchednutritionals.com/Announcements/LymeCultureTest%20-%20Q&A.pdf 3. You can do noting more that what you've done and wait. Option 1 can be done while on antibiotics, which I'm sure is a comforting thought right now. But since you'll still be doing the test soon after a bite, you may not get the slam dunk, lit up like a christmas tree, definitive result you'd like to have Option 2 requires that your son be off abx for a month, which I'm sure scares you. But...if it finds spirochetes, there's no doubt about the diagnosis. The down side is that it can miss 20% of valid cases. So there's nothing out there that's fool proof. But, I'm guessing that if this is a new infection that hasn't had years to find places to hide and build mega fortress biofilms, chances of finding active, swimming spirochetes would be in your favor. if it were my child, and I was facing an end to access to abx from local docs anyway, I'd do option 2.

Yes, I meant to say that maybe this group of kids would be well served by the meningitis vaccine, despite it's risks. And you're right, getting tested for a complement deficiency would be a good idea. No, our immunologist never tested. (unless it's accurate to assume that if you mount high C3d you don't have an overall deficiency, but that's not what I get from trying to understand this stuff - it seems the problem isn't a lack of complement response, it's a lack of an "off" button to control the response.) It would seem from my own kids' experiences that they are low on complement inhibitor proteins - thus the cytokine storms that wreck havoc in our lives. No problem getting complement to act like little Rambos attacking infection. Just lots of problems getting them back into the barracks. I am not anti-vaccine either - just anti being mandated and anti accepting unnecessary risks from what's put into the vaccine to give it a longer shelf life. Make a vaccine that's in the body's best interest, not what maximizes the corporation's profits. Suck up a logistical inconvenience or cost and remove the dangerous preservatives and "inconvenience" of having to see a doctor for three separate shots instead of a more dangerous combo shot. But let's say you did have a CCP deficiency but yet you still had a chronic infection to deal with (in my case, lyme). 1.if you did have a CCP deficiency, does a vaccination, intended to stimulate an immune response, make things worse? Which is the greater risk? Vaccinating and creating an unregulated storm or not vaccinating and being at risk for a serious/deadly infection? 2. What do you do to correct a CCP deficiency?

If you go to the site I linked in my earlier post, you'll find a great deal of info on many strains. This might help you decide which product is best for your needs.

As I read it, Swedo does not say you need to go from perfectly normal to completely nuts in 48 hrs. What she says is that it has to be a sudden and dramatic change. So maybe you had some "hmmm..." quirkiness all along. Or minor OCDish love for organization or "just rightness". But then within a short period of time, things escalate very dramatically. This is very different from kids who've always had some clinical OCD that only waxes and wanes but never really goes away (like maybe going from a 7 on the YBOCS scale to a 14, or from a 12 to a 20, but never back down to a 1 on the scale). And keep in mind that her criteria is for research purposes, not clinical diagnosis. You have to be able to set criteria so that other researchers can look at a pool of kids and make sure they include the right ones in their studies so that they can replicate research findings. This has been a problem in the past. Naysayers have put non-Pandas kids into studies and said "we didn't get the same results, therefore Pandas doesn't exist". So you need rigid criteria to prevent the wrong kids from getting into a study. I think it's also to prevent parents whose kids have "traditional" OCD from going down the wrong path. Antibiotics isn't going to help every case of OCD and there need to be parameters to help you decide what path offers the best chance of relief. the sudden onset or sudden/overnight increase is a fairly solid way of differentiating between these kids. But it also has to be taken in the full context of all other data.

That summer was before I went aluminum-free - and p'raps you'd had a drink by that time of the day? As for whole foods - to get to my house, you go to the middle of nowhere and turn right. The closest whole foods is 40 min away "over the mountain". But there is one down the street from our LLMD - guess I may have to make a list before our next visit.

This site looks interesting...as finding a natural sun screen and insect repellent are also on my to-do list... http://mightynest.com/shop Natural, Organic & Non-Toxic Products for the Whole Family At MightyNest, we hand-select the best collection of safe products that are free from known toxic ingredients. All products on MightyNest are free of lead, BPA, PVC, phthalates, parabens, formaldehyde, melamine, chemical flame retardants and more. We choose products made of stable non-leaching materials such as glass, food grade stainless steel, silicone, natural wood and bamboo, organic cotton and natural rubber.

One of the best pediatric LLMDs in the area is Dr J in CT. He is conventional in his approach and there are several on the forum whose kids see him. I'm sure he's booking many months ahead but if you get on the waiting list and can travel at the last minute, you can get bumped up - sometimes in a matter of weeks. Hopefully, those who see him will PM you his contact info. I no longer have it.

Thanks Nancy! I've seen something similar but wondered about the clean-ability. The one I saw had a sort of flexible straw/tubing at the top but I was concerned about being able to get it clean and also just how many times it would actually survive the bending of being opened and closed. Heading out Target-way tomorrow and will make a point of stopping in. As for Tom's - you're making me feel bad. If it nixes odor for your men-folk, what does it say about me that it doesn't make me feel "odorless?"

Here's a pretty good site I just stumbled on http://probiotic.org/streptococcus-thermophilus.htm This was particularly interesting: I have always been under the impression that the M proteins of strep are the ones that make autoimmunity a problem in our kids and it's the similarity in M proteins in certain strains of strep (particularly the dozen that cause scarlet fever) and the M proteins in the lyme spirochete that can make lyme a trigger for Pandas symptoms (that these M proteins look similar to the proteins found on the surface of heart and basal ganglia cells). I have total respect for those who feel that strep strains of probiotics are bad for their kids, but aside from Dr T's cautionary - maybe better to avoid it - advice a few years back, I can't recall seeing any research that suggests S. Thermophilus in probiotics is problematic. Particularly if this above quote is true and it has no surface proteins. Does anyone have any research to support the need to avoid S thermophilus in probiotics? Also interesting is this: and I would hate to avoid a strain based on name only if there is no actual similarity between the strep we fear and S thermophilus.

I don't know that it's "necessary". We do it for two reasons - the Truflora is especially good against yeast but you don't need to take it every day. Even their website suggests twice a week. Both Truflora and Theralac are pricey, especially with 3 family members taking them. So we use each one twice a week and the other three days, we use 1-2 Sacc B because that one is much cheaper. So my first reason for rotating is financial. The second reason is that it probably isn't a bad idea to rotate to give the gut a variety of bacteria. I got a book out of the library on probiotics and it alked about the various benefits of different strains. So the rotating is also to give variety. But I haven't ever been told it's absolutely required.

Last summer, the family lobbied for a ready supply of water bottles in the fridge. Have to admit, it has helped increase their consumption and hydration, particularly DS, who goes thru 2-3/day. But I'm not crazy about whatever chemicals are lurking in the plastic. They don't drink with the same enthusiasm out of a glass or BPA-free water bottle (the kind that has a straw that admittedly gets poor suction). Something about the size of the opening and the ergonomics of the bottle, plus the convenience factor... Does anyone know of a similar, reusable bottle that is chemical free? We have metal bottles for hiking, but I'm told it's not the same. On a similar note - DS is approaching the age where he's going to need deodorant. I don't want to use one with aluminum but haven't been thrilled with Tom's brand. Anyone use a good one that actually works?

Theralac and TruFlora rotated during the week, plus Jarrow Sacc. B.

I don't know if the WB is going to be reliable, since the blood draw was so soon after the bite. A full body rash makes me think hives/allergy more than a lyme rash. Any chance it's a reaction to the ceftin? My DD has broken out in hives with both omnicef and ceftin, usually after about 8 days of taking it -wasn't an immediate response. Does the rash respond to an antihistamine or an external like benadryl lotion? Take pictures. Chart/document symptoms and behaviors. But try not to worry.

We have well water, not public water, so we were always told to give our kids fluoride supplements. After reading about the controversy, I decided to discontinue the supplement. My kids are 7 and 9 and whatever benefit fluoride may have brought is likely a done deal. But the toxicity issue concerned me. Wasn't worth the risks. But...we also don't have an issue with brushing. I did research the effects of abx on teeth and aside from doxy and tetracyline, found no literature that suggested abx did damage or staining. Do you have something that makes you believe it's the abx? How old is your daughter?

So let me see if I have this right... If you have a deficient complement system (and I understand that is a gross oversimplification, but I am dizzy fro reading your links and this is all I can manage), you are at greater risk for contracting both the 3 bacterial infections that cause meningitis and meningitis itself. So you are the exact group most in need of vaccination against these bacteria, according to the PubMed article (whether we would agree and also whether the other ingredients of a vaccine are safe is a different matter). Most of our kids have probably been vaccinated against two of the three culprits If you have a complement deficiency, the risks of not getting vaccinated may be as great as not getting vaccinated - is that your point? (tho the efficacy of the vaccine is also a consideration - at least the menactra brand Or do I have your point backward? I told you I was feeling nauseous... After reading, my next questions are: 1. how do you test for a complement deficiency? Does having elevated C3d et al suggest there is no deficiency or do you need to look at C3b or some other complement measurement? 2. My bigger concern is how do you test for a CCP (complement control protein) deficiency, which seems to carry a greater risk for autoimmune problems from Wiki Ok...I need to wobble away for a bit.

I've tried to understand the complement system for 2 years. I always get off the laptop feeling like i just got off one of those puke-inducing rides at Six Flags. DS had elevated C3d that went from 25 to 50 during the first 2 yrs of disease (maybe because of undiagnosed lyme?). It was 53 pre-IVIG and 52 ten weeks post-IVIG. I asked the immunologist "if IVIG worked, shouldn't the compliment be much lower now?" and he thought probably yes, unless there was still an underlying infection. That, plus an Igenex test with 5 positive or IND bands, led us to lyme land. When we last tested it about a year ago, 7 months into lyme treatment, it was in the 20s. At the same time, his C3a was normal but C4a was elevated, suggesting a problem with ongoing mold exposure or long term lyme. Haven't tested it lately. DD had elevated C3d when we first suspected PANS two yrs ago. Over her first year of being on the radar but not treated, C3d went from 20s to 50s to 90s. When it was in the 90s, we also did Cunningham test and got CamK 179 and anti-lysoganliosides >1200 which is the highest bracket. Other Cunningham results were borderline normal. When we last tested C3d last summer, 8 months into treatment with combo abx, it had fallen into the 20s. Her C3a was elevated but her C4a was normal. She is a high histamine kid with wicked seasonal allergies and allergies to penicillin, cephalosporins and any natural supplement derived from a weed (andrographis, oregano, resveratrol). But her IgE levels, eosinophils etc are normal. Like I said, I can only stare at the research for just so long before I get dizzy. What are you wondering about complexes? I'm not sure I understood your question.

Way over my head. You're going to have to put this into Linda Blair Syndrome and S on Toast analogies for me. The only complement testing we've done has been on C3a, C3d and C4a.

What sort of approach are you looking for - natural, conventional, integrative? Matching your philosophy with the doctor's is important as you're going to be together for awhile.

DS was 8 when he did tindmax for 5 weekends. Really really hard on the whole family. All sorts of pandas-like symptoms returned. We had to stop. But...we did get some really nice gains. If you're going to do it, consider doing it during the summer. DS had loss of impulse control that made for some embarrassing school moments - me with teacher phone calls and him with friends backing away for a time. Not crazy about tindamax or flagyl risks. Wouldn't rule out using it again but when/if it's time to go after cysts again, I'm going to ask about pulsing rather than using a cyst buster.

Here's a posting on IOCDF about a Storch Skype study....not sure if it's still active but might be worth a phone call... http://www.ocfoundation.org/Participants.aspx#videophone Videophone CBT for Children & Adolescents with OCD Based on our promising findings, the University of South Florida OCD program is conducting a research study to examine what factors predict treatment outcome to cognitive-behavioral therapy that is delivered via videophone. We are recruiting a group of children and adolescents with Obsessive-Compulsive Disorder (OCD). Our past research has found that as many as 80% of kids who received this type of CBT received some benefit. However, we want to know for whom this treatment is most appropriate because videophone-administered CBT may be a way to make treatment more convenient and affordable (less travel costs) and less time-consuming. Your child must be between the ages of 7-17 and have problematic OCD symptoms to be able to participate in this study. You will have to travel to our facility for the initial evaluation (we cannot cover these costs); however, study treatment and evaluations will be provided at no charge. If he/she is eligible to participate in this study, he/she will either receive 14 90-minute sessions of videophone-CBT (twice a week for the first 4 sessions) and 3 psychiatric evaluations of varying lengths. If you are interested or have questions, please call Dr. Eric Storch at (727) 767-8230 or email him at estorch@health.usf.edu.

Lisa, I hope all goes well this week. I can hear the exhaustion and disappointment in your words. I'm sorry answers haven't been easier. You're one of several moms this week who have that white flag of surrender tone...it's been a long winter. People will tell you to take care of yourself but it's easier said than done. I think it's wise to look at options to just get quality of life back, including meds if that's what's needed. Don't beat yourself up. Sometimes it helps to step away. I think it's ironic that the doctor we see now is someone I looked into three years ago but at the time was afraid to take a chance on. I have a binder of stuff I printed when we first started out and in it are articles on vitamins we now use, but I was too unsure of myself back then to "experiment" on my kid (Ha! The things I've put him since then). My point is that sometimes an answer is there but you aren't able or ready to see it until you change your perspective. Try not to get discouraged. This could just be a moment of re-grouping, even tho it may feel like a low point. I hope so.

LLM -- are you saying you think the pyroluria is the weak link? or are you not willing to make such a statement anymore -- is it just one and there is no THE? Knowing that what I think today will be different than what I think 12 months from now...right this moment, I think there is no single THE culprit. I think, at least for my son, it's that A+B+C+D = Linda Blair Syndrome. When we took away C and only had A+B+D, we got Sh*t on toast syndrome, which was bad, but better than LBS. When we treated D and only had A+B, we got something less than SOT. So I guess what JAG and I have both seen is that probably every PANS kid has some sort of infection + inflammation part of the equation. But if your kid doesn't respond 100% to abx and/or a second or third Pandas treatment or lyme treatment or myco treatment...then maybe you also have a C + D to your equation. Doesn't mean you were wrong to treat A + B. Just that you're not finished until you also find and treat C and/or D. For my son, pyroluria was an underlying problem - probably something he always had. But as long as everything else was ok, it wasn't catastrophic. Then add infectious insults, which bring detox issues...and life becomes a nightmare. So for me, it's become an excavation project. Treat one thing and see what's left. Treat the next big offender and see where you're at. So there's no single issue. Just bigger and smaller pieces that all come together. Does that make sense?

Yes - that's it exactly! We have different insults to treat (pyroluria v. yeast) but the same result. It's a fragile recovery...but this time - for the first time - it feels sustainable and that we'll get it back if/when he hits blips. Because we (think/hope) we've found the underlying weak link in the armor. If we strengthen that, he becomes less vulnerable. ITND-infectious triggered neuropsychiatric decline; I think that would cover everybody. - including us parents! (BTW - working on a cookbook for 101 ways to eat crow - wanna help?)

Ok, sounds like you need a professional for ER/P. I think Storch may have a skype program for long distance therapy. Might be worth looking into rather than wasting months on bad local therapists. Again, DCMom is a good resource for this. As for your own health - totally hear you. I am only now done with my nervous breakdown. For my birthday, I took myself to a naturopath. We too are at maybe mile 20 in the marathon (but who really knows - those gods with the warped sense of humor have moved the finish line on us a few times before). But no victory dance if you don't all make it across the line. So invest in a good therapy plan so you can stop accommodating this irrational demand. Invest in some health for yourself. DS isn't the only one entitled to feel good. And he can't get there without you.