LNN

I'm sure you'll get several responses that differ from ours, but for whatever it's worth, this is what our LLMD suggested: abx and ALA upon waking (7:30 on weekdays) abx and vitamins at dinner (6pm) probiotics at bedtime (8pm) I had originally tried to space the abx every 12 hrs and had the school give the probiotics 2 hrs after lunch (the little guys have the best chance of surviving the stomach if given away from a meal when stomach acid is lower). But then the school was sort of in my business and it made my son "stand out", having to leave class for 10 min every day. The LLMD didn't think it was essential that the abx be given exactly 12 hrs apart, especially since one of them is zith and has the longer half life. And he felt it was more important to take the probiotics at bedtime for 2 reasons - first was the lower stomach acid and second was that the whole body slowed down, including the bowels, and the probiotics would have longer to just sit there and do their stuff. So he's the one who came up with the schedule. The other day, DS was feeling poorly so I gave one charcoal pill at lunchtime - at least 2 hrs away from both the a.m. and p.m. abx. The lady at the health food store said that if DS had diarrhea, to take 2 charcoal pills, but since this isn't an issue, she cautioned against giving so much that it might bind him up. So we did one pill and it seemed to help a great deal. I'd ask your LLMD about a possible schedule and also about how much of a detox supplement to use.

In our house, it's about striking a balance. My DS is on a combo of abx for lyme, plus one supplement (alpha lipoic acid) for brain fog plus vitamins. So there are a large number of pills going down his throat every day already. For his own sanity, we're only doing enough probiotics to keep stolls a normal consistency and ward off diarrhea. On a normal day, he takes one Theralac which has 5 strains, 2 prebiotics and 30 billion/capsule. Our LLMD recommended it. It seems to do the trick. If he happens to have more than one day of loose stools, we'll add a culturelle (1o billion) or a PB8 (8 billion) for a day or two until things return to normal. But for the most part, he only takes the one Theralac pill. I think you have to consider what else your child is taking and what your outcome looks like (literally). If all seems normal and behaviors/health seem balanced, then maybe your 8 billion/day is fine. I don't think there's any magic number or minimum requirement. You find the level that works for your child and balance it with all the other meds or supplements you're asking your child to swallow. That's our approach anyway.

I'm sorry you have to do battle again. I think the biaxin sounds like a good first step. Zith has never been effective for sinus issues in my house. We usually end up forking out the $ for ceftin. With your concerns about myco, I'd think a long course of biaxin would make a lot of sense. Maybe see if you can get an extended script - 30 days? If you see improvement, it might allow you to avoid a CT scan. You know my little soapbox about making sure infections are gone before doing the big gun stuff. Maybe a long abx trial and then re-check blood work for myco and IG levels... Now for your own health, remember to hang on to the summertime gains and remind yourself you'll get there again. This is a setback, not a defeat. Wishing you quick and positive results, Laura

I can only offer you my personal experience...all of the aggressive steps we took with my DS brought some sort of benefit, but not always the one we expected. When we did pex 11 months after his first confirmed strep, pex eliminated tics. When we couldn't keep DS in remission for more than 2 months at a time, we did IVIG. It was a horrible recovery - 8 weeks of ugliness. I don't think IVIG did anything for his system (no change in IG levels or C3D immune complex levels in the before/after testing) but it might have given us the lyme answers we needed. Prior to IVIG, DS's standard western blot was entirely negative. 9 weeks after IVIG, his Igenex lyme panel came back positive or indeterminate on enough bands that our LLMD was convinced that Lyme was part of our problem. 2 months into a lyme protocol, DS is reaching new levels of recovery - improvements we used to only see with prednisone before. So it's been like peeling the onion. No single treatment did it for us, because we had an underlying chronic infection. But we didn't find it until after IVIG. So for us, IVIG was an expensive "lyme challenge" that may have brought enough of a herx to turn tests positive. Had we been inclined to look for lyme earlier, maybe we could've accomplished the same thing with various antibiotics with an LLMD. But it's all could've/would've/should've at this point. So should you do IVIG? I think it depends on your financial situation. I don't think it will do harm. But if you suspect a chronic infection, I don't know that it will eliminate the source of your problem. It might make the source easier to find. But you might also accomplish the same thing working with an LLMD - not necessarily for lyme, but they seem better informed on other bacterial and viral infections than most doctors. So long winded way of saying do what's most affordable. If IVIG will be covered, it may help, but if there's a chronic infection, I think you may not get the "cure" some kids do. If IVIG will take a big chunk of change out of your pocket, consider an LLMD who can do various tests and challenges to try to tease out the infection in other ways. Most of all, don't give up. You may not have expected to be the driver, but I bet you'll make it to your destination better than you think.

Just came home from a very positive 504 review and had to share with people who'd understand. DS was 6 when Pandas struck. In the two years since, we've battled with an arrogant school psychologist and insecure, controlling principal and we only begrudgingly given a 504 in May, one month before DS moved on to another school and they wouldn't have to deal with it. Today, we had our 504 review with the new school. Night and day difference. They were interested, engaged, and genuinely cared about doing what was best for DS. The thing that really set the tone for the meeting was that I put 5 writing samples in front of them, all from the past 12 months. The night and day differences between exacerbation and good health were so striking (think of the drawing samples by the girl on Dr K's website) that the light bulb clicked for everyone in the room. I could have talked about Pandas and behaviors till the cows came home and they wouldn't have really understood. But those samples spoke volumes and let them see things they're trained to see. They could see b/d reversals, margin drift, loss of mid-line lettering - and suddenly we were on the same page. From there, they could extrapolate and start to see how every aspect of DS's behavior would be changed in an exacerbation and how it truly would have to a really flexible set of accommodations depending on where he was health-wise. They then understood how frustrating it must be for DS to know he was capable of X but only able to produce Y and how that would effect his self-esteem. So I guess the moral of the story that I wanted to share was that if there's an aspect of your child's life where you can show the school examples over time, this seemed to be the key (plus now working with a far more agreeable group of people in general). I planned for this meeting the same way I've learned to approach doctors appointments - with visual examples and brief talking points. Wow - being understood - what a concept!

I think you'll hear varied opinions on this and unfortunately, not enough research has been done to give any data one way or the other. There have been kids on the forum who get and stay will without IVIG, those who do well after only one, some who seem to benefit from multiple treatments. In the end, you're going to have to follow your gut and pocketbook on this one. My only personal advice is to make sure you have checked for strep plus any chronic infections like lyme (thru a specialty lab, not standard commercial labs), mycoplasma, candida (believe this can be screened with a blood test but not certain)..etc. It's like making sure you pave the front walkway of your house before installing a white carpet in your entrance way. If there's still mud in the front yard, you're not going to be able to enjoy the clean carpet for very long. You'll be in my thoughts.

Maybe you can pin this under the "helpful threads" section of the forum? Seems like something I'll want to refer back to and wouldn't want it to get buried.

I have a similar sentiment. We only did one IVIG, thinking we were treating Pandas (now looks like Pandas+lyme). The reaction for the following 8 weeks was horrible for everyone in the family and I can't imagine doing another, particularly since at the end of 8 weeks, my son was no better off. I'm not knocking IVIG - I think it's helped many kids. Just not mine. I don't think it's a great idea when lyme is in the picture. Motrin - and lots of it - gave us some relief. Agree with Wendy's suggestion for benadryl as well. I understand losing your patience after you've seen that it's possible for your child to behave. Try to remember that she would love nothing more than to be that way again. It takes a team effort to get through this. Try your best to pull together as a family. I try to remind myself that I am teaching my son by my own actions. Sometimes I totally fail. But remind yourself that this is temporary and you know you have a great kid who will re-emerge.

It depends on who you ask. Interpreting Lyme results can be very subjective. My son's Igenex results had an overall "negative" on the report because not enough bands were positive. But band 41, which had been negative in March, was now double positive post-IVIG, several lyme-specific bands not tested in March were indeterminate (31, 34 and 39) on Igenex and his C3D immune complexes were 53, which is 6+ times above normal. So that told me a false negative was very possible, because immune complexes can bind to the lyme antibodies and prevent them from showing up in the test. Our LLMD took all this into consideration and felt my son did have Lyme - that indeterminate was not the same thing as negative. It was a clinical judgment, but 6 weeks later we are in a much better place, so I don't care what the disease gets called. I just know that the combo of abx is what seems to be helping. My advice is to check C3D levels at the same time you do the Igenex blood draw so you know whether a false negative due to high complexes is a possibility. But again, I don't mean to sound like every kid has lyme.

Just want to add a little re: lyme and prednisone (this isn't directed at you, laure - just a general fyi). One of the reasons I discounted lyme earlier this year (aside from a completely negative Clinical Labs western blot) was that my son always had an awesome response to 3-4 weeks of prednisone. I thought that couldn't possibly happen if he had lyme. After IVIG and an Igenex indeterminate lyme panel, we went to an LLMD who felt DS did indeed have lyme and maybe Bartonella. I asked how DS could respond so well to prednisone if he had lyme and I was told that 3-4 weeks isn't considered a long time for prednisone. Not long enough to necessarily allow Lyme to have a field day. And if DS was feeling crappy (sore muscles, brain fog) then prednisone could actually bring him great relief for a short time. Of course, long term, it's a bad thing to give someone with lyme and I'm in no way advocating it. But in the short run, a positive response to prednisone doesn't rule out lyme and I didn't necessarily cause any harm by giving it to DS. (personal opinion - the silver lining in our case was that giving prednisone showed me a glimpse of the real kid and kept me fighting instead of resigning myself to fears that the brain fog might have been a permanent learning disability). I don't want to come across as suggesting everyone has lyme. I just wanted to pass along the info my LLMD shared re: prednisone.

Unfortunately, I wasn't privy to that meeting and don't know any more than what's been posted on the forum. I know from her own published papers that Dr Cunningham knows lyme can elevate CamK and trigger an autoimmune response (Evidence of Borrelia Autoimmunity-Induced Component of Lyme Carditis and Arthritis 2005). I know from my own discussions with our Pandas docs about my son that they know lyme can look a lot like Pandas and they supported our looking into it when my son became a "non-responder" to IVIG. But looking at it systemically? Not that I'm aware of. I think getting Pandas recognized has been hard enough. I'd doubt anyone would want to muddy the waters further until "pure" Pandas research was much more firmly embraced. But that's just my opinion. No inside scoop. As for the white paper, I haven't heard anything. Would make a nice Christmas present tho, wouldn't it?

We aren't planning on any additional IVIGs, not based on medical reasons, but for personal and financial reasons. My son had a horrible experience on Day 2 of IVIG and the summer was so hard on everyone, that to ask them to go thru it again would be asking a lot and I'd need a really compelling reason - a slam dunk assurance it would move us significantly ahead, not just because it might help a little. Plus even with insurance covering a large chunk of IVIG, we still paid a significant portion out of pocket and one of the personal challenges I alluded to in my last post was that I was just laid off. So any treatments that come with big price tags aren't options for the foreseeable future. (Now if anyone knows a way I can take all this "wisdom" that Pandas and Lyme has bestowed on me and turn it into a paycheck, that's a different story ) Nancy - yes, the bootstraps are way over the ears by now, but since we woke up to a Nor'easter with snow on the ground this morning, the ears can use some warmth anyway. The depression I went thru in September was unlike anything I'd felt since I was a teenage and had my heart broken for the first time. It really knocked the wind out of me. So it's a really good feeling to not only be getting my son back, but to be getting myself back too. Thanks to everyone for the warm welcome back. I shudder to think of the parents who haven't found this forum and are out there trying to fight alone.

If you email Igenex to request a test kit, their price list comes in the kit, with a list of all tests and costs. Also, though not advertised, if you test two family members at the same time, they give you a 15% discount (you need to indicate this when you submit) While they do not accept insurance, they do send you a receipt and the paperwork you need to submit your own claim to your insurance company.

A few friends have sent me these links and I thought I'd pass them along...they are somewhat dated, so please realize newer info may be out there. But as a novice, I found this helpful: Explaining Western Blot tests: http://flash.lymenet.org/ubb/Forum1/HTML/022767.html WB for Lyme: http://www.anapsid.org/lyme/wb.html Understanding the WB: http://www.lymenet.de/labtests/brenner.htm

Thanks WD and Kimballot. I realize I dropped off the face of the earth. In the month-long wait for our LLMD appt., I sank into a pretty serious depression. Some friends were pretty worried. I stopped coming to the forum because it's hard to offer support when you're not in such great shape yourself. The fear of going from one lunatic-fringe disease to yet another was overwhelming. And what if a lyme protocol didn't work? Then what? The past few weeks also brought some other hardships that took a lot of emotional energy. I guess my being able to post again is a sign of picking myself up by the boot straps (let's hope). Wendy, we have tested for bartonella which came back negative. But the LLMD still suspects it due to all the neuro symptoms. The absence of proof isn't proof of absence. However, I'm not sure he's seeing Bartonella or "simply" a Pitands reaction to an infection (in this case lyme bacteria). I don't think many LLMDs would recognize Pandas any more than the Pandas docs can recognize lyme. They're so close and even a Cunningham test can't tell you which you might have. So for now, I'm just happy to focus on things that are working and leave labels for a time (God forbid) that we need to explore something else. Jill, no offense taken. I only used the term "classic" as a shorthand way of saying OCD, tics, rages, urinary urges, lability, anxiety, dysgraphia.... My post was long enough. So resorted to "classic" as a summary. And yes, humbled is a good way to describe how I was feeling. After trying to digest Cunningham's "The Pathogenesis of Streptococcus", trying to learn neurology and immunology that was way over my head, being so "vocal" about Pandas and trying all the big gun treatments, to still be at a dead end was devastating. It's good to be through that tunnel and seeing a little light again. Thanks for all your support - and for leaving the light on - it means a lot.

Ive seen a few "where are we now" updates and felt I should also chime in after a few months absence. My son contracted PANDAS two+ years ago at the age of 6. He had two very clear cases of strep with two very classic PANDAS episodes. After 10 months, we found a PANDAS doctor (CAM K 183), did a month of prednisone, had a T&A, then did plasmapheresis, which successfully got rid of tics. Unfortunately, we did not enjoy a long remission. Staying on 800mg/day augmentin did prevent my son from getting strep himself, but he seemed to be a canary in the coal mine and slipped into an episode whenever he was exposed to strep. We did a second month-long treatment of prednisone with wonderful results this past January. But the rest of this year, we couldn’t seem to get more than a two month reprieve without something flaring. Brain fog and muscle pain were the major complaints. In March, we did a standard lyme western blot which was completely negative. But something still seemed to be “not right”. So we did IVIG in June. Day 2 of IVIG was terrible. My son developed a fever (something we'd dealt with periodically over the 2 yrs). My son said it was one of the worst days of his life. The summer was horrible. At first, we expected it. But after 8 weeks, my son wasn’t getting any better. Muscle pain had gone away for the first 4 weeks but then returned. His C3D levels were still 53 (6+ times above normal and the same as they were pre-IVIG). The brain fog had gotten so bad that he couldn’t tell me what 7-0 was. I gave him some motrin and an hour later, he did math like a hot knife thru butter. Something was not right with this picture. Our doctors agreed. They felt that something seemed to be keeping my son sick. We did Igenex testing which came back indeterminate. But what struck me was that band 41, which had been completely absent on our standard western blot in March, was now double positive. Other lyme bands (31, 34, 39) were indeterminate in both IgM and IgG. We started seeing an LLMD and DS has made significant improvements. As other lyme parents report, not every week is better than the last, but there's a trend upward that seems to be sustainable (so far). Most significantly, academics are improving and brain fog is lifting. No OCD, no tics, no rages (attention issues and muscle pain come and go). Some friends have asked me "so does this mean he never had PANDAS?" We know he had a tick bite 6 months before PANDAS and had some PANDAS-like behavior a month later. But it was nothing like the full-blown, Linda Blair episodes he had after his 2 streps in the fall of that year. So my personal thinking is that he may or may not have had lyme first. Maybe his immune system was already struggling when he got strep. Maybe that was the straw that broke the camel's back and triggered the whole autoimmune train wreck. Or maybe he got lyme sometime during the past 2 yrs (we live in CT in the woods - where 90% of tics carry lyme). We'll never know. I've spent a lot of time wondering if testing for lyme before pex and IVIG would've saved us a lot of time and money. But we had a standard western blot this past spring that was completely negative - not even a 41 band. So I don't think we would've discovered lyme without doing other things first. The tics were so bad and so traumatic that I think pex allowed us to put the worst things behind us. I think IVIG may have made his immune system strong enough, or temporarily reduced his C3D complexes enough to make lyme antibodies detectable by the Igenex testing. It could be that I need to believe these things to justify all the money we've invested. I don't think I'll ever know "what if". But the reason for my post is mostly to encourage the parents whose kids are "non-responders" to one treatment or another. Our case was like peeling an onion, and I'm not sure we're at the bottom of everything yet. But if you only get partial response, then keep digging. Do I think my son had PANDAS? Yes. His body's response to strep was clearly severe. But there were symptoms that weren't "classic" that I lumped into the PANDAS bucket. Things like the unexplained fevers, the muscle pain, the brain fog that seemed more severe than what other parents described - a fog that was more like Alzheimer's than a head cold. With a lyme protocol, these things are resolving. I suspect my son's immune system is still going to be triggered by strep, tho I hope that by treating the lyme (LLMD thinks it may be 18-24 months) maybe we'll keep his system healthy and calm long enough to let the system dial down. I have no reason to believe that the potential for a PANDAS episode will be gone, only that the thing that's been keeping him sick may be finally eliminated and he'll have a better chance at long remissions. I don't know if I believe PANDAS can be cured anymore. I used to. But I don't let myself think that far ahead. For now, I'm just enjoying the improvements and trying to cherish every small accomplishment. So for those of you who are still fighting to get remission, keep digging. Keep believing. It's just that your answers may be a little more complicated than the average bear's.

You're far from alone in feeling this way. I am a minority experience on the forum, as we had a negative experience post-ivig (June 2010) and are only now exploring an indeterminate lyme result. Perhaps IVIG will give you a positive response without bad stuff. I don't know your insurance or financial situation, so I don't know if postponing the IVIG until after your husband returned is an option. or perhaps having a family member stay with you while he was away so you'd have help? Are you treating the Lyme as well? Managing both diseases, plus a post-ivig recovery, is a lot to ask of someone to do alone for a week. I'd either try to arrange for additional adult support that week or consider re-scheduling the IVIG until after the lyme was being addressed somewhat. Your are a super mom, but none of us are SuperMom. You need to have a medical treatment plan/timing that supports everyone in the family, not only the patient. I know I'm in the minority on this, so feel free to take my comments with a grain of salt. Some have an easy time after IVIG. But I'd hate for things to really fall apart on you just because you felt obligated to do something next week. Given the number of people waiting for IVIG, I don't think it would be a problem filling your spot if you postponed.

Only my personal experience - but we were advised to wait until the infection was cleared before using prednisone. But I've had other doctors, esp. several immunologists, tell me they prescribe prednisone at the same time as abx for sinus infection in order to reduce swelling and allow nasal passages to drain. So there doesn't seem to be consensus. But one option would be to give the abx a chance to fight the infection first and then add the prednisone back in. As for the gray coloring - I think things like dark circles under the eyes, pale skin - is common for sinus infections. So that's a possible explanation. Make sure she has enough fluids. Of course, these things always happen heading into a weekend. I know the term "herx" is used loosely on the forum, but I *think* it really only applies to die-off of spirochetes like those in lyme and syphilis, not other bacterias. I don't know if myco is a spirochete, but you don't typically get worse before you get better when you take abx for non-spirochete bacterial infections. (the die off of certain strains of GABHS can cause scarlet fever, but you don't feel sicker, you just get the rash). You may want to call the doctor today and get his/her take on the situation.

My sister is bi-polar and I can only speak about personal experience. With her, the moods are more a wax/wane pattern. For days, weeks, months, she'll be very very "Up" - like on speed, everything is going to be rosey and wonderful. Then she feels it slipping away and goes into a funk - for days, weeks, months, where everything is awful, no one can do anything right and she becomes very provoking - picking irrational arguments and needling everyone around her until they snap. It's like she has this paranoia that everyone is going to leave her and she pushes and pushes until she almost gets a self-fulfilling prophecy. But her bi-polar isn't something that changes throughout the day. There are bad periods and good periods, but it's not like an on/off switch. You can tell which kind of period she's in. It's not like every second of every day is bad, but there's a general tone. My personal experiences with PANDAS is that it's more like rapid mood swings throughout the day, and we personally don't deal with much depression - perhaps that's due to youth. I don't want to discourage you from searching for answers. Certainly a compassionate doctor willing to do an experiment of a few months of antibiotics may help. Does your daughter also experience OCD, any movement disorder, any separation or general anxiety, any attention issues? Can she explain what's happening? It may also be worthwhile to explore Cognitive Behavior Therapy to help her gain some control tools. Please keep us posted.

No, Emerson (and maybe EmmaLily) is going to write a best-seller that tells the world the whole Pandas story and shares a message that helps thousands of kids like her. She's going to be the light house for our kids and use her eloquence to say all the things the rest of our kids want to say but can't find the right words.

Worried Dad, You and your son are like my lifeline right now. Unfortunately, my son doesn't weigh enough to take 2000 mg XR, so we're having to cut the 1000 mg pill in half and take half every 12 hrs,which is still giving him the augmentin, but we're not getting the time release benefit. Will have to fatten him up, but at 63 pounds, that may take awhile. But knowing that the info is getting in helps. My son describes it as the spark you get when you connect two live wires. He knows his brain is supposed to connect the two wires. But then he holds out his two index fingers and tries to touch them together, purposely missing by a mile. He says that's how his brain feels all day. He can't get the wires to connect. He brings home school work that shows he clearly has no idea what's going on at least part of the day. He's lost and faking it and when he gets home, he just wants to veg. Can't tell you how many times a day I think about quitting my part time job, pulling him from school and just spending this year at home. But then, how would we pay for all the doctors visits? At least knowing that your son has climbed back out of the hole gives me something to hang on to. Thank you! Laura

No jello throwing here. I've had a similar question. Could my son have picked up Lyme "markers" (IgG antibodies to lyme) from IVIG. Are we just measuring the presence of antibodies not created by his own body? I don't know enough about it to know the answer. IgM is a relatively short-lived antibody and the IVIG is stored and tested for months before it's used. I don't believe (tho I am on shaky ground here) that much IgM survives. And I read that IVIG is mostly IgG. My son's recent results have positives and Indeterminates on both IgG and IgM bands. So in my novice mind, that sort of squashes that concern. The second thing I keep coming back to is that my son's C3d levels are still high. IVIG should have lowered them, even if there were someone else's left-over IgG antibodies to Lyme or whatever. The complexes are forming in response to an active infection - of something. Could it be Lyme? Maybe. Could doing a lyme test - even 9 weeks post-ivig - skew the results? I don't know. But I know something is still in our way. And I'm not talking about not wanting to believe my son is a brat or not wanting to believe there's some residual stuff from PANDAS. I'm talking about his cognitive skills and the significant decline since May (did IVIG in June). He went into an episode 2 weeks prior to IVIG and I couldn't figure out why - no known strep exposure this time. But something has changed. Skills were there and aren't now. Pain went away for 4 weeks post-ivig and now is back. Something is still there. Like a bad Freddie Kreugger sequel. So I'm glad for the information that's sneaking its way into the forum. I'm glad for the exchange of ideas. I know I certainly don't have all the answers - not even close. I've spent 2 years learning everything I could about PANDAS. I know so little about Lyme and other possible diseases. So I'm happily soaking up the info and personal stories people are willing to put out there for consideration. I pick up clues and see if any apply to our situation. Some leads fizzle. Some pan out. However, I do wish we could have discussions that don't polarize, that don't make people reluctant to post for fear of getting into the muck. The dozens of people lurking and reading might have answers I need. But I won't get those answers if this becomes a cat fight. Debate is one thing. But there are cheap shots and personal attacks (on both "sides")that just don't belong here. I love being able to read, explore links and research papers, verify things on my own, hear honest but respectful opinions on personal experiences with doctors, and see if it applies to my situation. Please, for those of you who have strong feelings one way or the other, take the discussion private. This thread started out being about what might be going on with kids who haven't had positive responses to IVIG. Now that I'm unfortunately in that group, I would love to have people roll up their sleeves and help me brainstorm about what might be going on. I can - and have - made my own decisions about which labs, which tests, which doctors. What I need help with is which leads, which ideas, what research, what clues, do I look at next. If anyone wants to help me, would love to hear from you.

Yes, agree with both you and Nancy. I wasn't responding to your posts at all. More the general sense in the last 7 pages of posts on this thread that there's some sort of line in the sand being drawn and we're supposed to "chose sides", that you're in one camp or the other. I feel like there's room for a sick kid to have more than one illness at a time. Nothing in the past 2 years has been black or white for us. Why start now?

LLM, where did you get the info that lyme can be a trigger for pandas? just asking. are you saying you are abandoning the pandas route? I said NOR do I think lyme is a trigger - in my son's case. I am not speaking about anyone else's experiences. Only mine. No, I am not abandoning PANDAS. I completely expect that if my son has Lyme and we treat it, it will hopefully help his brain fog, his muscle pain and lower his C3d complexes, which are currently elevated without any obvious signs of strep. However, if we treat and eradicate Lyme, I completely expect we will still be left with PANDAS. My hope is only that we would then be able to enjoy remissions that lasted longer than 2 months. That maybe the brain fog - which is not unheard of in PANDAS but is not a typical symptom - would go away. That maybe he could get to puberty without too many PANDAS flairs and maybe just be like Sam Maloney and have to deal with an occasional mild flair in adulthood that can be treated with a normal course of abx. Again, in my son's case, I don't think co-morbid Lyme is a hard stretch. We live at the base of a mountain of woods, bears, coyotes and wild turkeys. We pull tics off of us and the dogs every year in spite of trying to be diligent. I don't understand why it's hard to make room for both.

I may be in the minority, but I don’t see Lyme and Pandas as an either/or diagnosis, nor do I think that Lyme is the trigger for my son’s PANDAS symptoms. Two years ago, my son’s behaviors changed overnight (9/21/08) after getting his first (known) case of strep throat and scarlet fever (9/10/08). Six weeks later, a second case of strep and a second exorcist episode of PANDAS. A long winter of ups and downs. So we’ve done a T&A (7/09), pex (8/09) prednisone tapers (6/09 and 1/10) – which all contributed to helping my son. But none were a “cure” – rather, they moved us from the 10 yard line in our own territory to maybe the 30 yard line in the other guy’s territory. We’re way better. But no where close to victory. So we bite the bullet and do IVIG (6/10). Horrible summer – turning back pages? Maybe. Finally PANDAS stuff goes way after 8 weeks. But then some things remain. Mostly muscle pain and scrambled eggs for brains. (apologies to my son – I don’t mean to sound mean – I’m just so angry at whatever it is that takes him away and holds him prisoner). We did a standard western blot and elisa in March – everything negative. We did Igenex 3 weeks ago and have indeterminates on three starred bands and positives on IGM and IGG band 41. So…I know my son has PANDAS. But I also think it’s possible he has Lyme (we will probably re-test in a few weeks). We live in semi-rural Connecticut. Every person in our town is a candidate for Lyme. So I think it’s entirely possible that a kid with PANDAS can also have Lyme just as likely as the rest of the healthy kids on our street. Having PANDAS doesn’t give him immunity to Lyme. I think he can have both. And no matter how aggressively we treat the PANDAS, something is in the way of full recovery/remission. I guess I’m confused about the conversations that make it feel like you can’t have both. Am I missing something? Or am I just cranky?