LNN

I also posted this on the Pandas forum... So I am at war with cytokines and have been searching for anti-inflammatory options other than ibuprofen or naproxen (Aleve). My theory is that when we attack lyme too aggressively, the release of toxins triggers a cytokine storm and autoimmune/Pitands response. The cure is as bad as the disease itself. So we're between a rock and a hard place. Tomorrow we head to the LLMD. The goal - kill the lyme without triggering Pitands. Considering pulsing abx, looking into metals/oral chelation, binding agents, and I need some way to squash inflammation. I came across these threads and was wondering if anyone had any experience with luteolin... http://www.raysahelian.com/luteolin.html Luteolin exerts a variety of pharmacological activities and anti-oxidant properties associated with its capacity to scavenge oxygen and nitrogen species. It also shows potent anti-inflammatory activities by inhibiting nuclear factor kappa B (NFkB) signaling in immune cells. Luteolin and brain inflammation University of Illinois researchers report lutelin, found in celery and green peppers, can disrupt a component of the inflammatory response in the brain. Rodney Johnson of the University of Illinois at Urbana-Champaign and graduate student Saebyeol Jang found that luteolin inhibits a key pathway in the inflammatory response of microglia -- brain cells key to the body's immune defense. Microglial cells exposed to luteolin show a significantly diminished inflammatory response. Luteolin reduces production of interleukin-6 -- used in cellular communication -- in the inflammatory pathway by as much as 90 percent. My link Luteolin is a yellow crystalline compound. It is a flavonoid; more specifically, it is one of the more common flavones.[1] From preliminary research, it is thought to play a role in the human body possibly as an antioxidant, a free radical scavenger, a promoter of carbohydrate metabolism, or an immune system modulator[citation needed]. If applicable to the human condition, these characteristics may inhibit cancer mechanisms. Basic research results indicate luteolin as an anti-inflammatory agent[2] with other potential effects on septic shock.[citation needed] It has been suggested for multiple sclerosis on the basis of in vitro work.[3] and several pubmed studies (always makes me feel better when I can find these) http://www.ncbi.nlm.nih.gov/pubmed/21671964 Significance and Impact of the Study:  The findings indicate that luteolin may be used as a basis for development of antimicrobial agents aimed at bacterial virulence factors. http://www.ncbi.nlm.nih.gov/pubmed/21631167 ABSTRACT Microglia activation is one of the causative factors for neuroinflammation, which results in brain damage during neurodegenerative disease. Accumulating evidence has shown that the flavonoid luteolin (Lut) possesses potent anti-inflammatory properties; however, its effect on microglia inhibition is currently unknown. Moreover, it is not clear whether Lut also has indirect neuroprotective effects by reducing inflammatory mediators and suppressing microglia activation. In this study, we examined the effects of Lut on lipopolysaccharide (LPS)-induced proinflammatory mediator production and signaling pathways in murine BV2 microglia. In addition, we cocultured microglia and neurons to observe the indirect neuroprotective effects of Lut. Lut inhibited the LPS-stimulated expression of inducible NO synthase (iNOS), cyclooxygenase-2 (COX-2), tumor necrosis factor alpha (TNF-α), and interleukin-1β (IL-1β) as well as the production of nitric oxide (NO) and prostaglandin E(2) (PGE(2)). Moreover, Lut blocked LPS-induced nuclear factor kappa B (NF-κ activation. Preincubation of microglia with Lut diminished the neurotoxic effects, owing to the direct anti-inflammatory effects of the compound. Taken together, our findings suggest that Lut may have a potential therapeutic application in the treatment of neuroinflammatory disorders. There's a site that sells the stuff as a lozenge or a powder - but I'm always hesitant to make my kids guinea pigs. http://www.luteolin.com/ Anyone have any thoughts, pro or con? Will also post on the lyme forum...Any input appreciated. Laura

So I am at war with cytokines and have been searching for anti-inflammatory options other than ibuprofen or naproxen (Aleve). I came across these threads and was wondering if anyone had any experience with luteolin... http://www.raysahelian.com/luteolin.html Luteolin exerts a variety of pharmacological activities and anti-oxidant properties associated with its capacity to scavenge oxygen and nitrogen species. It also shows potent anti-inflammatory activities by inhibiting nuclear factor kappa B (NFkB) signaling in immune cells. Luteolin and brain inflammation University of Illinois researchers report lutelin, found in celery and green peppers, can disrupt a component of the inflammatory response in the brain. Rodney Johnson of the University of Illinois at Urbana-Champaign and graduate student Saebyeol Jang found that luteolin inhibits a key pathway in the inflammatory response of microglia -- brain cells key to the body's immune defense. Microglial cells exposed to luteolin show a significantly diminished inflammatory response. Luteolin reduces production of interleukin-6 -- used in cellular communication -- in the inflammatory pathway by as much as 90 percent. My link Luteolin is a yellow crystalline compound. It is a flavonoid; more specifically, it is one of the more common flavones.[1] From preliminary research, it is thought to play a role in the human body possibly as an antioxidant, a free radical scavenger, a promoter of carbohydrate metabolism, or an immune system modulator[citation needed]. If applicable to the human condition, these characteristics may inhibit cancer mechanisms. Basic research results indicate luteolin as an anti-inflammatory agent[2] with other potential effects on septic shock.[citation needed] It has been suggested for multiple sclerosis on the basis of in vitro work.[3] and several pubmed studies (always makes me feel better when I can find these) http://www.ncbi.nlm.nih.gov/pubmed/21671964 Significance and Impact of the Study:  The findings indicate that luteolin may be used as a basis for development of antimicrobial agents aimed at bacterial virulence factors. http://www.ncbi.nlm.nih.gov/pubmed/21631167 ABSTRACT Microglia activation is one of the causative factors for neuroinflammation, which results in brain damage during neurodegenerative disease. Accumulating evidence has shown that the flavonoid luteolin (Lut) possesses potent anti-inflammatory properties; however, its effect on microglia inhibition is currently unknown. Moreover, it is not clear whether Lut also has indirect neuroprotective effects by reducing inflammatory mediators and suppressing microglia activation. In this study, we examined the effects of Lut on lipopolysaccharide (LPS)-induced proinflammatory mediator production and signaling pathways in murine BV2 microglia. In addition, we cocultured microglia and neurons to observe the indirect neuroprotective effects of Lut. Lut inhibited the LPS-stimulated expression of inducible NO synthase (iNOS), cyclooxygenase-2 (COX-2), tumor necrosis factor alpha (TNF-α), and interleukin-1β (IL-1β) as well as the production of nitric oxide (NO) and prostaglandin E(2) (PGE(2)). Moreover, Lut blocked LPS-induced nuclear factor kappa B (NF-κ activation. Preincubation of microglia with Lut diminished the neurotoxic effects, owing to the direct anti-inflammatory effects of the compound. Taken together, our findings suggest that Lut may have a potential therapeutic application in the treatment of neuroinflammatory disorders. There's a site that sells the stuff as a lozenge or a powder - but I'm always hesitant to make my kids guinea pigs. http://www.luteolin.com/ Anyone have any thoughts, pro or con? Will also post on the lyme forum...Any input appreciated. Laura

C3D complexes are a general measurement of how activated the immune system is. When the body is healthy, C3D complexes will be less than 8. When you have an infection, you can sometimes see this number climb. If it stays high over an extended period of time, it will stay elevated. My kids both have very high numbers - DS has stayed in the 50s despite IVIG, which should have lowered this number. When it didn't, it told us there was an underlying infection that prompted us to test for lyme. My daughter's numbers climbed from 25 to 48 to 98 over the course of a year. So we know she's also fighting something. We use these numbers to track what's going on with their immune systems. But C3D is not indicative of a specific infection. It's a general measurement for how active the immune system is. It's sometimes correlated with arthritic pain - people with rheumatoid arthritis have elevated C3D complexes.In their case, it's an autoimmune reaction that's keeping the body in hyper-drive, not a bacterial infection (or not one that science has yet discovered). There are two other immune complexes that are often tested by LLMDs - C3a and C4a. C3a is often correlated with lyme and C4a with mold. But the theory is the same - elevated numbers indicate immune system activation.

Sorry for the graphic question, but figured I'd ask some experienced poop-ologists. DS started taking 1800mg activated charcoal daily - started last Friday when school ended for the summer (before that it was intermittent). He's also taking TruFiber daily. Over the weekend, his BMs turned dark green - the color of spinach. He's also now having two a day instead of once every day or two, which is great. My question is - is the color change due to toxins or just a result of the charcoal itself? In other words, does the charcoal turn green inside the body or is it due to what's being absorbed? For those who use daily binders, did you see a change, and did that change continue or did things "normalize" after the start-up period? (my DH is laughing - his wife has a place where discussing poop is quite normal and where others will have "expert advice" on the subject. Something we thought we were done with when we bought our last box of diapers).

I believe Pixiesmom dealt with a thyroid dx. She used to post quite a bit on the Pandas forum, then dropped off for awhile and was posting on the lyme forum this past spring. Haven't seen recent posts, so you may want to PM her.

Cab, Ozimom has good advice. Successfully treating a complex illness requires finding the right key for the right lock. You are more likely to find the right key with either a DAN doctor or an integrative doctor who can blend western medical practice with natural treatments. We see a DO (doctor of osteopathy) who is like an MD but the focus of training is on the whole body as a system rather than isolated body functions. The drawback is that many integrative and DAN doctors don't accept insurance payments. They'll probably give you the forms to submit a claim to your insurance co. for reimbursement but you're out of pocket for any difference that your insurance co. won't cover. It's expensive, but sometimes it ends up being the only path that yields results. As for beating yourself up about time lost - stop. It isn't helpful to anyone and it isn't the result of not caring or not trying. You gave your best and trusted the doctors we've all been taught to trust. And along the way, you've picked up clues. You know what didn't work. And while that's not very satisfying, it is useful. Take the energy you're using to beat yourself up and turn it against the disease(s) that are kidnapping your child. You can blame yourself after he's well. Right now, it's a distraction. My son has been ill since the end of kindergarten. He just finished 3rd grade. Do I wish I could go back and do things differently? Absolutely. But each road block gave us clues. We move forward and inch toward answers. As for not recognizing OCD, I read somewhere (maybe on the OC Foundation site) that the average OCD sufferer goes 14 years before getting help. OCD is like a kidnapper - it terrorizes the child and tells him that if he tells someone what's going on, something really horrible will happen and it will be the child's fault. How are you expecting yourself to see through that and "know" that your young child has OCD? So in this order, I'd do the following: 1. Stop beating yourself up 2. Read as much as you can on OCD in young kids (What to Do When Your Brain Gets Stuck, Up and Down the Worry Hill to read with your child and for you - Talking Back to OCD by John March - it's for teens and their parents but will help you understand that your role is to be a coach - that you can't fight the OCD - only your child can). 3. AFTER you understand OCD a little better, you can look for a therapist - you'll be better able to interview therapists and find someone who "gets it" - make sure they understand CBT (Cognitive Behavior Therapy) and ERP (exposure response prevention). Any other therapy won't touch the OCD. I personally would not seek a psychiatrist because they primarily prescribe medications without therapy and until you unravel what's going on, psych meds may complicate the picture - but if you're at wits end, no one here would judge you for trying a low dose of something to help the family cope - very personal decision. 4. Seek an integrative, DAN, DO or other doctor who uses a "blended" approach to health. Many of us have fired our first or second pediatrician and seen several "experts" before finding one who could be a partner. I personally steer away from ones who claim to know it all, as I think our kids are too complex and we need someone who will help us explore, not dispense one-size-fits-all treatments. I'd personally interview doctors and find one who uses some sort of detox to support the body while you're exploring treatments. But that's my bias based on what we've found for my son. 5. As for detox, it's hard to speak in absolutes. As Jodie (sptcmom) pointed out in another post, some well-meaning doctors may focus on treating one thing only to unleash something else. So I hesitate to throw things out there as absolutes. Your son could have a lot going on that requires doing things in the right order. So I'll just toss out some general detox ideas, but they probably won't produce dramatic results in and of themselves. The principal of detox is to suck up the toxic stuff floating around in the body. The liver and kidneys are the major detox organs. So you can look at supporting the liver - but with your son's complex and possibly untreated issues, you should do this under the guidance of a doctor. Sptcmom may have more input on this. I'm just not qualified. The second detox tool commonly used to to add a "sponge" that can suck up or bind to the toxins. Activated charcoal, bentonite clay, chlorella - are commonly used. They go into the gut and bind to things and are then eliminated in a bowel movement. How much? Start out slow and build up. The caution is that these binders bind to everything, not just toxins. So you can't take them at the same time you take an antibiotic or probiotic or other medication. Timing has to be a few hours away from other medications. Again, an integrative doctor is your best guide for this. Once you've sucked stuff up, you need to get it out of the body. So you need to make sure your son has regular bowel movements - at least once a day, preferably more, but firm, not loose. A loose stool means things are passing too quickly thru the intestines, before enough liquid, with nutrients, is absorbed. So the goal is frequent, firm but not hard, BMs. Likewise, lots of water keeps the kidneys clean. I wish I could offer more concrete steps, but if I've learned one thing in the 3 years I've been on this road, it's that the sicker kids are like onions, where you have to peel away layers of illness. No simple or quick answers. Read as much as you can and find a doctor who can work with you. I know the thought of dealing with school in a few months is overwhelming. But for now, I think I'd focus on the foundation - learn about OCD and about supporting the body. Then see where you're at in 6 weeks and worry about school then. You can only focus on just so much at once.

Jodie, Thanks for the check-in. We did testing for HLA, MSH and minerals (to check if magnesium levels were contributing to tics, and I suppose to see if zinc levels warranted or ruled out HPU investigation). Will hopefully get results this week at LLMD appt. So we've been in a holding pattern. Stopped tindamax and A-Bart 6 weeks ago and have seen steady improvement but had to resort to daily Aleve for 3 weeks to get thru the day (still boggles my mind after all these times of seeing it help). Am thinking major herx then triggered a biotoxin tsunami and cytokine storm/Pandas flair. Things are mostly calmed down, but now have to figure out how to attack the lyme without triggering Pandas. So, much on my mind and not too much to say in the way of offering advice these days. Mostly lurking. Hope to be able to post an update on the lyme forum next week. Thanks for asking, Laura

I'm so glad to hear all this. Such a hard, long climb back from the brink - the whole family should be proud of your collective efforts! Glad DS is feeling glimpses of good health - so sweet! Hope it continues!

CAB - can't offer any input on tenex. We were offered when DS was 6 and in his first episode (Tics were a major major issue). We declined. I do want to say, abx do not necessarily work immediately and it's sometimes a matter of finding the right one. But since you're also dealing with spectrum symptoms, this may be something to consider...the article comes from a lyme perspective, but the message is the same regardless of which bacteria is the trigger - biotoxins can be a major contributor in a case of chronic illness. Biotoxin Pathway Given your concerns, I'd suggest trying alternatives first - such as ways to support the body detox (milk thistle, clay, charcoal, chlorella, et al), things to help inflammation (ibuprofen, curcumin, tumeric), and encouraging super regular BMs - minimum once a day, using fiber and/or miralax disguised however you need to. Can't tell you how these things, together, have helped DS feel better (not great but far better). I know it sounds crazy to suggest detox/anti-inflammatories for ODD and impulsivity. But when we focus on these things, my son's impuslivity resolves and I hear "ok, mom" instead of 10 minutes of arguing.

Thought this article might strike a chord, Nancy. No - don't have articles on dosage. DS and I take something like 280 mg. Just bought a Vitamin Shoppe brand that has 380? but it doesn't seem to work as well. Has a strange odor when you take the cap off the bottle, darker color than the two other brands we've used. So despite the cost savings, don't think I'll be ordering this brand again. Also used one from Solaray which was fine but so far, the one I think I like best is NOW brand. Could be because that's the one we used first and it made the biggest impact because we needed it more back then. IDK. But we each only take one pill/day and it seems to help. Like you, could be placebo, but when I've skipped days, I tend to feel a little bogged down. So placebo or not, it's become part of our daily regimen. Have an LLMD appt this week and will be reviewing doses of everything. Will let you know if he weighs in on the matter.

Always amazes me when I come across a mainstream article that seems so amazed by the things we here already know - that the health of the rest of the body directly effects the mind. That there's no such things as "mental health" or "mental illness" - the brain is an organ just like the rest of the body and is influenced by the health of the rest of the body. For some reason, the presence of the blood/brain barrier has caused science to squander 50 years thinking there's no connection, that the brain is an island. Anyway, thought some of you might find this an interesting read...a shame they don't mention that detoxing the liver, with say a milk thistle pill that costs $0.50 a day, might be an alternative to the liver transplants they allude to. http://www.cnn.com/2011/HEALTH/06/16/liver.disease.ep/index.html?hpt=hp_bn1

Grace, You may want to try this group http://www.advocacyforpatients.org/hi_ivig.html IVIg Patient Resource Center Advocacy for Patients is creating this IVIg Patient Resource Center to assist patients whose physicians prescribe intravenous immune globulin (IVIg) to treat a wide range of illnesses, for which insurance companies may deny coverage. Our goal is to empower you by teaching you how to file a winning appeal to convince your insurer to cover IVIg for your medical needs. Most often, when an insurance company denies coverage of IVIg, it is on the ground that the treatment is "experimental or investigational." Insurers may take this position when IVIg - indeed, any treatment - is prescribed for what's called an "off-label use." An "off-label use" is a use that is not listed in the labeling approved by the Food and Drug Administration (FDA). As a general rule, when an insurer denies coverage of an off-label use, it is very hard to convince them to make an exception. However, we have had good success with getting coverage for off-label uses of IVIg largely because there is a wealth of medical literature supporting these uses. I also posted a similar link about 18 months ago - I'll try to find it, but I'm not particularly search savvy for older links. You might also want to start a new thread - you aren't the first to fight this battle after the fact.

Grace, I'm sorry your absence hasn't been due to dancing on the table, celebrating success. Wish there was some magic answer... A few things came to mind while reading your post - First, how long has DS been on zoloft? Is it possible the dose to too high and is activating, rather than alleviating his anxiety? Second, are you doing anything for detox? IVIG may be helping the body fight the lyme and the die off could be causing a strong herx response. Things like milk thistle (if you're not allergic to ragweed), bentonite clay, charcoal, lots and lots of fluids, chlorella - are good tools for helping the body clear toxins. You can post on the lyme forum for more discussion. Third, and this is only to keep in mind if things don't resolve...my DS had a very adverse reaction to IVIG. He seems to be in the minority, even among the lyme kids getting IVIG. So I've been looking for explanations of why, and why he goes into a Pandas/Pitands episode whenever we treat the lyme too aggressively. These links might be helpful http://www.publichealthalert.org/Articles/scottforsgren/biotoxin%20pathway.html and http://www.survivingmold.com/diagnosis/the-biotoxin-pathway (similar info presented in two slightly different ways). We've tested my DS for HLA and MSH and will get results next week. The results may change the way we fight the lyme, with a much greater emphasis on detox rather than big guns/take no prisoners... One other link I've found very interesting is this one - it's quite long, but gave me lots to consider... http://bacteriality.com/2008/05/26/biofilm/ The most important thing to hang onto is that you've seen changes. You've had glimpses. As gut wrenching as this is, try to remember that and fight for it. I hope your appt. next week goes well! Laura

Welcome back...in a sad sort of way. If you've been gone long, you've missed the conversation that's taken place about lyme disease. Some parents have found that neuro-lyme and/or bartonella (another tick borne illness) looks a lot like Pandas in our kids and it's possible that the lyme is triggering a PITANDS response. You certainly have enough confirmed strep to stay on the PANDAS trail and it's possible that the prophylactic dose of abx wasn't high enough or frequent enough to make a dent in the aspie-like behaviors that didn't go away. But I just wanted to mention the lyme issue because it's been a large topic of conversation that you would have missed. It too is implicated in inducing aspie-like behaviors. One of the Pandas doctors now routinely tests for lyme and mycoplasma as part of his blood work. So if behaviors continue unresolved after a time of treating for Pandas, you may want to keep it in the back of your mind that members have discussed several other culprits beyond strep that need to be eradicated. I hope your DAN is able to offer some help. I know this isn't where you want to be spending your time, but hopefully you'll be able to get help quickly and start the healing process.

Our LLMD has my DD (who used to get yeast infections every few months- when she was not on abx) - taking TruFlora probiotic to fight yeast. She took 1 Truflora daily at bedtime for two weeks, and now takes it twice a week as a prophylactic (takes 1 Theralac probiotic the other 5 days of the week). She hasn't had a yeast infection in the 8 months since starting, even tho she's now on 2 abx. These probiotics have 30 billion (my DD is 6 - 42 lbs). Augmentin is not one of the abx mentioned frequently for bartonella. I hear of it used more often in combo with zith for lyme. But it's common to find both bartonella with lyme in a patient. Bactrim, biaxin and doxy are used often, usually in combo with a second abx. Doxy would not be a good choice for a younger child who doesn't have all of their adult teeth yet. Many of the abx used can cause photosensitivity (easy sunburns). So lots of sunscreen. FWIW - my DS tested completely negative on a standard WB, but had positive IgM and IgGs for bands 31, 34 and 39 - which are highly associated with lyme but not tested on the standard WB. Igenex results painted a very different picture than the standard WB because it looks for different antibody responses.

As I understand it (and that means nothing), the term Herx was used originally to describe a worsening of symptoms caused by die-off and toxin release when a spirochete shaped bacteria is killed - the two most known being syphilis and borrelia (lyme). So strictly speaking, a herx is a lyme thing. But the term herx is used on the forum more loosely, to describe the getting worse before you get better phenomenon. When you get a certain strain of strep and your body starts to kill it, you can get scarlet fever (not all GAHBS strains cause this). The rash is a result of the die-off and the bacteria releasing toxins. It's a herx of sorts, except the rash doesn't really cause a worsening of symptoms in the same way people mean when they describe a herx caused by borrelia die-off. "True" herxes in my experience almost made me want to stop treatment, which seems to be what you're describing. There have been other things in your previous posts that make me second Nancy's advice.

Deedee HOORAY for DD!!!!!! This is so awesome!!!! I hope she got a huge reward and lots of hooppla! What a breakthru - you should be so proud of both of you. I don't have a good abx recommendation - only that doxy generally isn't given until kids have all their adult teeth (can cause permanent staining in teeth that haven't fully emerged). Also, re: the diarrhea, we've had great results since switching our probiotics to Theralac. Not sure what you're using, but a change in probiotics may be an alternative to lower doses of abx. Keep us posted - this is great progress! Laura

I'm trying to learn as much as I can about biofilms. And I like the principal of pulsing abx. But my question for your doctor would be what does he think your DD is fighting? Because the theory behind pulsing is that you match it to the life cycle of the bacteria. Hitting something once a week with one dose of zith seems low, regardless of what's suspected. I could see doing 2-3 days on, then 5 days off, with maybe a steady 5 days on once or twice a month. But I'm not seeing how the schedule your daughter's on would be string enough or long enough to eradicate something. I'd be worried about the bacteria developing resistance - since I could see many of the bugs surviving such a weak attack. I'm not a doctor and perhaps there's a very valid reasoning behind this. I'd just encourage you to ask what that reasoning is. Also, can't comment on the specific biofilm-busting plan you've laid out. But one charcoal pill seems low. Maybe start there and consider increasing if you feel the body may need more help. Charcoal can be binding, so push the fluids and be mindful of counting BMs. If she isn't having a daily BM, push more fluids or add fiber (or miralax) to keep things moving. The goal is elimination of toxins, not just binding them. Finally, think of charcoal like a sponge. It will absorb everything, not just toxins. So be sure to give it at least 2-3 hours away from abx as well as probiotics. Timing can get tricky. For the summer, we'll be giving charcoal (or some other binding supplement TBD) at lunch time. Abx at breakfast and dinner and probiotics at bedtime (our doc likes having probioitcs sit in the gut at night when the bowls move more slowly). Hopefully someone else will have better insight into the biofilm protocol you're following. If not here, then you might consider posting on the lyme forum.

Joint pain is also a big symptom of lyme. My son has both lyme/bartonella and Pandas and there's a lot of overlap in symptoms. As you go down this path, it's important to test for a number of infectious triggers, not just strep. It can get complicated. As for your daughter, viruses can also trigger PITANDS and autoimmune responses, tho bacterial infections are more commonly discussed. Antibiotics won't do anything for a viral infection. Strep is a bacteria, as are lyme and mycoplasma.

Anti DNase B is a lagging indicator of the body's immune response to a strep infection. It generally rises 4-6 weeks after an immune response is initiated. Elevated titers can linger for some time. So it's a look in the rearview mirror. ASO titers generally rise 1-3 weeks after the immune response is initiated and then will return to baseline fairly quickly. It's an earlier indicator. If you miss the brief window to catch a rising ASO, then elevated Anti DNase B is another opportunity to measure an elevated response. However, one measurement by itself is less meaningful then a series of measurements, due to the slower tapering down of this marker. So you'd be looking for a rise, which would support a suspicion that there was an ongoing infection or a decline, which would indicate that the infection was in the process of or was cleared. Labs have ranges of "normal" but each individual has their own range of normal. Some people have naturally low titers while others have naturally high levels. So what's more telling is the direction of movement, rather than any single measurement. You will hear from a number of parents that their kids don't show elevated titers even with confirmed strep. And even with kids who do respond with elevated titers, there's an optimum window to do these tests (i.e. 1-3 weeks post-infection for ASO, 4-6 weeks for AntiDNase B.) The results have to be put in context of when you suspect the infection, as timing can be a big factor on the results. Thus, the direction of multiple tests is what's really telling. Also, keep in mind that symptoms are more important as a guide. ASO and Anti DNase B are strep titers. Other infections can also trigger a PITANDS response. One other indirect way of looking for ongoing infections is to look at immune complexes. Elevated complexes indicate an active immune response. There are 3 immune complex measurements that are discussed most - C3d, which is a general infection measurement, C3a, which is commonly associated with lyme and C4a, which is sometimes implicated in lyme but more often in chronic mold exposure. Again, not all patients will have elevated complexes. But if you do, it's a good indication of infection (of something).

Darlene- Meant to address your decline from 90% to 60% - it happened to us as well - twice. the first time was after pex. DS was getting visibly better in so many aspects and thru a strange set of coincidences, I had the chance to write an article about our experiences. At the end of the article, I brag about how well he's doing and how we're so hopeful...only to have him tank by the time the article was published 3 months later. Felt like I should have run to the grocery store to get some barbeque sauce for the crow I was eating. The second time happened this past April, after seeing DS get so much better at the start of bartonella treatment, then to see him slide backward when we started to focus on lyme. It really is a roller coaster. Try to hang in there (not that any of us have a choice). It means there's more to the disease, but every set back is a clue and another chance to kill stuff that's been lurking. I guess it's like earning your black belt in Karate. Each test gets harder and requires more practice, effort and energy. But each step also brings you closer to your goal. (not that I wouldn't jump at the chance to stop right at the belt we're at, skip the rest of what's ahead and go straight to good health).

My DD6 used to get infections all the time. Vusion was of limited help. I eventually resorted to using the adult cream applied externally and maybe a millimeter internally applied oh so carefully with a q-tip. Nothing intrusive, just a bit to help with the itching sensation. Then limiting sugars, pushing cranberry juice. We also did two weeks of TruFlora probiotics daily, then went to TruFlora twice a week and Theralac the other 5 days. She hasn't had a yeast infection since (it's been a year) despite ebing on two abx for bartonella). The TruFlora is meant to discourage yeast and has been far better for her than culturelle.

Darlene, What I like about this article is the atypical presentation, the focus on behavioral changes - that alerts parents to not dismiss sudden changes. What kept us off the lyme trail for so long was that ours was so neuropsych in nature and while the muscle pain was there, the psych stuff was so dominant, that we dismissed the possibility of lyme for a long time (despite a known tick bite - we were stuck on Pandas due to known strep in the same time period). Sometimes I think the "sound bite" short lists of lyme symptoms does a disservice, because it can make some people dismiss lyme when they shouldn't. It's frustrating - the lack of literature and press on the neuropysch aspects. Thanks for being willing to put your family out there and keep the coverage going! Laura

I know some parents with ASD kids may see this thread and be able to offer better insight regarding Pandas v. ASD. But as for your question about pill form v. liquid, I'm not sure the amount of clav acid is going to make much difference. If anything, I might try a different abx altogether. And remember to give a decent probiotic, at least 2 hours away from the augmentin, to protect against c. diff and yeast. I agree with Pandas 16 that in classic Pandas, once the infection is cleared, you should see a resolution of symptoms as time goes on. When you don't, it's wise to rule out other chronic infections, such as mycoplasma, lyme, bartonella, other tick borne illnesses, sinus infections... Your child may not have strep, but that doesn't mean he doesn't have Pitands and an ongoing infection which isn't being eradicated by augmentin. You say his symptoms have been building since he was 5. But if he had a normal toddlerhood, I'd think that would make an ASD diagnosis at age 8 more of a label for "we don't know what else to call this set of symptoms" rather than an early developmental disorder that was just missed for 8 years. But again, I leave it to the expert parents to chime in. (BTW - if you do decide to switch abx and see a change for the worse when you first start, that could be a sign that there is indeed a chronic infection and you're seeing something called a "herxheimer" response, which is ironically a "good" sign).

Thanks, Smarty. That's why I like posting stuff like this - helps with due diligence. The price was enough to give me pause. But was also planning to research the ingredients. It's a frustrating quest trying to find an anti-inflammatory. Many options are for adults only (and are off-label - some things like cox-inhibitors may be ok for an adult to take even without hypertension, but for a kid, totally different set of considerations). Other things like tumeric or omegas don't seem to touch symptoms the way ibuprofen does. So I keep resorting to motrin or aleve due to lack of other options. Kimballot - agree on the brain discussion. Upon a re-read this morning over coffee, it didn't live up to its promise. But for any budding authors out there, the brainblogger site is actively recruiting authors - the work needs to be supported by citations of peer-reviewed literature and you don't get paid. But for anyone looking to either spread the word or build up a portfolio, it might offer an avenue to get published. (Emerson...emmalily...some of my email pals...hint hint)