LNN

Cool idea. What's interesting tho, and a little "disappointing" is that some supplements are listed low on effectiveness but the focus of that supplement is for something we on the forum don't think of - e.g. tumeric/curcumin for cancer, when we think of it for inflammation, or milk thistle for hepatitis when we use it for detox, quercetin studies that look at athletic performance when we discuss its antihistamine effects. But still a cool concept. Thanks.

:lol: Biggest laugh I've had all day!!! Thanks! ( i mean it...) Yeah, well...consider the source

I find there are two times I tend to snap most. The first is at the beginning of an episode, when I'm not in that "mode" and I'm expecting normal. The second is as things improve. Partly, it's because if they could hold it together yesterday, then you want them to hold it together today. You feel like you deserve it. Your tank is empty and you get mad at the possibility that there's still more to come. Plus, you yourself have held it together for so long, under such stressful circumstances. And now, you're just so done. We're the types of people who are great in a crisis - we'll calmly get everyone out of the burning building but later that night, as we brush our teeth for bed, we'll totally lose it. I think you're normal. And you are far far far more patient than I am! So I'm sure if you lost it, you were long overdue. And yes, I see a seasonality to my daughter's issues (not my son's). Spring can be a little iffy, with allergies making her emotional. Summer is pretty great and early fall is good. But once the windows get shut and kids start sharing colds, or maybe when the sunlight gets less, or when indoor molds grow...who knows the trigger, but yes, by her birthday in January, she's been a wreck. But never any strep. So we were always reluctant to think Pandas. She too is on a bartonella protocol. Only time will tell. One theory is the bucket idea - that maybe there's low level infection the body can fight when it's not stressed, but add other insults and suddenly the bucket overflows and things explode. But who the heck knows.

Yes, I too am glad. The last 2 months have been hard, but a lot of that is because it brings back so much PTSD from the past 2 years of Pandas. But prior to the backslide, we had 3 awesome months that have kept me going. My son got sick almost 3 yrs ago, when he was finishing kindergarten. Since then, he's struggled physically and academically, and I could never be sure how much my belief that a bright kid was inside was real and how much was wishful thinking of a Type-A mom. I don't really know the "real" kid. The three good months when we started lyme treatment gave me the much-needed reassurance that the bright kid is in there and that a lot of things are indeed illness-related and not just a spoiled, moody kid. To have setbacks after that feels like a kick in the gut, but I got a chance to re-acquaint myself with the kid I've been fighting for all this time. And that keeps me going. Despite the setbacks, we too are getting to a better place.

My daughter has had this same rash on her buttocks at the time we started treating her for bartonella. It was faint, and looked like I'd spanked her more than it looked like a rash - just a faint, stippled redness. It was more obvious after a bath, but I assumed any redness would be brighter after being in warm water. It lasted about 2-3 days. Our LLMD couldn't say one way or the other. The picture I took with my cell phone was hard to see and he said it was possible but couldn't be sure. We're treating her more based on her neuropsych and GI symptoms, and an equivocal WB, after ruling other things out. The rash wasn't part of the dx. I don't know if she has bartonella or not, but I know she was kidnapped by intrusive-thought OCD and is now 95% with zith-bactrim. It may be worth a try and see what happens.

Yes, I realize it may well be a herx. I perversely hope so. And DS was better today - far less edgy, agreeable and "here", not far away. But when we didn't see any change for 3 days after stopping omnicef last week, that didn't feel right. So I'm just gun shy about dismissing the things that don't fit neatly into a lyme picture. I ignored myoclonus, serious brain fog, muscle pain and fevers for 2 years while I very publicly talked about all the things that did fit into our Pandas picture. I just don't want to make the same mistake twice. The other thing I'm trying to avoid is only posting when I'm in a good place, and not "airing dirty laundry" - waiting until after dark moments. I generally only sort out my confusing moments with one or two people, but when I saw this thread and Laure was wondering if she was the only one feeling like she did, I figured it was time to chime in with my own doubts and fears. Hopefully, in a week or two, it will be clearer. I like this sentiment. I think I'm getting to this point too. Guess you kinda have to - we've been here about the same amount of time. When my son first got really sick, I stopped taking photos of everyday events. I didn't want memories with those dark circles under his eyes or videos of tics. This year, my mother's day present was a new camera, which I plan to use a lot this summer. It's time to stop holding on for dear life and time to remember to hold life dear, tics, ticks and all. I want to thank all of you for your support in this thread. You guys helped me off the cliff and back onto solid ground (a good day for DS didn't hurt either). Laura

From what I understand, the age limit for doxy has to do with tooth development, not age per se or weight. Doxy can permanently stain teeth that are still developing (at least, that's what I recall as the issue). Shae's mom - on day 2 of IVIG, my son developed a fever almost immediately. It stayed between 100-102 all day. He became lethargic, hard to rouse, nauseous. They slowed the IV drip, so what took 4 hrs on day 1 took 9 hrs on day 2. They held off on giving motrin and benadryl at noon because they were afraid he'd throw up. When they finally gave it to him at 4pm (because we were driving home that night), the fever broke and he was responsive in about 20 minutes. Everyone shook their heads - had never seen this before. This may have been our first omen. But the IVIG sent DS into a prolonged exacerbation - 8 weeks of h**l. OCD (tho mild compared to most, as this has never been DS's major issue), we couldn't drive a mile without his needing to go to the bathroom, angry, edgy, PMS-ey, defiant, manic-silly-hyper, severe muscle pain, and scrambled eggs for brains. His handwriting looked like he'd suffered a stroke and after 10 weeks, he couldn't tell me what 7-0 was, as he was about to enter the 3rd grade. The emotional roller coaster was really hard on everyone, but it was the brain fog that was so heartbreaking. It was 12 weeks before we started to see the fog lift a bit and then 2 weeks later we started lyme treatment. In the 3 months after that, he made more progress than he'd made in 2 years of Pandas treatments. Between Oct and Jan., he gained 7 reading levels (peers gained about 4), he doubled his reading fluency and all of his academics improved to grade level after lagging for so long. So this improvement made me feel really good about following a TBI protocol. When he stalled in Feb, I thought, ok, this happens. We'll switch abx and the progress will resume. And when things got bad (see description of post-IVIG), I thought, ok, its a herx. But tics also returned, which we hadn't seen since pex 18 months prior. And even tho I'll take tics over OCD any day, it brings back a PTSD response for me. Because the tics are always accompanied by the thick fog. I was prepared for a 3-4 week herx, not a 7+ week one (tho they are better than a month ago). If you're old enough, you may remember a Cecil B DeMille/Charlton Heston movie "Moses". In one scene, when all the first born sons are killed by a mystery illness (but skips the houses that have lamb blood on their doors), the mystery illness is illustrated by a fast-moving, green fog (probably dry ice, but as a kid it looked eerie). You hear lots of mothers wailing in the city. That fast moving fog is what comes with my son's tics. I lose him, for many many weeks or months. So it's not the tics but the supporting cast, that sends me over the edge. For now, we've resumed omnicef after our 4 day break but will hold off on tindamax for awhile. I am trying to be open minded and patient. But I also don't want to be married to a dx and try to make things fit into a box the way I may have with Pandas. DCmom - I hear ya, just from the other side of the coin.

PEX is essentially blood dialysis but only of the immunoglobulin (the clear plasma of the blood). The patient's blood is taken out of the body via a central PICC line, spun in a warmed centrifuge (to maintain body temp) and the plasma/immunoglobulin is removed and discarded. The red blood cells are then returned into the patient's body, along with albumin and proteins to replace the volume of immunoglobulin that's been removed. The thinking is that the auto-antibodies attacking self are removed (however, so are all other antibodies, including those that may be fighting current infection). The body still has B cells and will regenerate antibodies as needed. But my personal feeling is that if there's an active infection that's resulting in the creation of auto-antibodies, you're just going to regenerate the same stuff you've just removed unless the infection is first eradicated. Just my opinion. IVIG is the opposite. Instead of removing antibodies, you're adding in tons of antibodies from donors. The thinking is that these healthy, normal antibodies will flood the body and convince the immune system to stop making it's own (which are defective and attack the self). One benefit is that a flood of antibodies may also help fight any current infection. However, on the flip side, this may trigger a pronounced herx. It also carries risks, however small, of introducing something from one of the donors. It was this element that always made me uncomfortable. However, as a practical matter, it may have been the severity of a herx that made it so rough for us. All I know is that it's not something my family would willingly go through again. I'm only offering my personal experiences. I know plenty of others who feel exactly the opposite and with valid reasons. It's a very personal decision (as well as a financial one).

I think I'm a minority voice, but IVIG was a very bad experience for my son. It is the one treatment I would not do again, but I know others feel quite the opposite. I always always struggled with the decision and considered it a "last resort" (unlike pex, which always felt right and I have no regrets). So my only advice is to follow your gut. It will probably be more accurate than the advice of others, pro or con.

Well, they say misery loves company, and I'm sorry to say this thread has actually made me feel better. DS had an amazing response when we initially switched from the Pandas path to the lyme/bartonella path. Three months of so much promise - he felt so so good. But he plateaued and then backslid. So in March we switched out abx combo and either the omnicef we added is kicking butt or dropping augmentin is causing a flair. Tics returned immediately upon the switch and many symptoms quickly ramped up. They've been slowly, slowly subsiding over the past 7 weeks but....As a test, we stopped omnicef for 4 days last week. The first 3 days, saw no change one way or the other. 4th day, things got worse and tics increased significantly. Re-started omnicef and things are up and down. (we're suspending tindamax weekends until we get this sorted out). Too soon to say which direction. I thought I could stomach this, but when you can't tell a long herx from a flair, you start to question yourself - a lot - and at 2am. I always know we're in a bad spot when I start waking up in the middle of the night again. I initially didn't want to hijack this thread, but something's been bothering me and maybe you guys have some ideas. In Pandas, it's all about inflammation, cytokines, keeping the immune system calm. In lyme, it's about herxing and detox. But you never find articles about how lyme differs in kids (ok, maybe a sentence or two), not much about neuro-lyme, very little about bartonella, and aside from one Cunningham article about RF and lyme, nothing about lyme-induced auto-immunity. Yet, here we have a group of kids who are all presenting with similar problems, all of us having come from a Pandas dx. Lyme literature suggests that if you can lessen the load, autoimmunity may resolve. So the focus is on germ warfare. But how do you support your child and your family during the long long battle? This is nuts. My current thinking is that maybe what I'm seeing isn't a traditional herx but more of an autoimmune response. Not sure what to do if that's the case. Or maybe I need to do more research on biofilms. But all of a sudden, this path feels "wrong" - getting better shouldn't bring us back to the really bad places for months at a time. Maybe our kids are a sub-group, or maybe it's because they're kids and they respond differently, but the fact that it isn't just my kid struggling like this makes me think there's more to this than a "herx." The last time I felt this way was after IVIG when DS didn't follow the script and react as predicted. That led us to lyme. It's happening again, but I don't know what to do about it. I'm missing a puzzle piece. We stay the course...for now.

The fatigue and the cycling of symptoms also made me think of tick-borne illness. Yet the rise in titers is also interesting and not something to dismiss. In lyme land, the 4 week cycle is common with a cyst-cycle of lyme and the neuro-psych OCD might make you consider bartonella. Has your son ever had any rashes or anything that looked like stretch marks? Has he had any antibiotics - and if so, how have his symptoms responded? Here's one suggestion for your doctor - check your son's immune complexes. Elevated C3d complexes might indicate a chronic infection. Elevated C3a complexes can suggest lyme and elevated C4a can suggest mold issues (someone from the lyme forum correct me if I got these two crossed - I'm going from memory). The immune complexes aren't proof in and of themselves, but they can tell you something about how active various immune system pathways are.

I think the first thing to realize is that if your child has a lyme diagnosis, then you've already been dealing with lyme, even if you haven't been calling it that. Second, there's no rule that says everyone has to get worse before better. I think mentally it just helps to prepare yourself for a bumpy road. But by coming from the Pandas world, it's nothing you haven't already dealt with. It took me some time before I had the energy to educate myself about lyme. It's like getting the wind knocked out of you. But you recover, and you move forward. What choice do you have? There are things you can learn about detox and drainage and supporting the body and the spirit. But your answers may be a little different than anyone elses. How much probiotics depends on diet, meds, and symptoms. It's highly individual IMO. You're looking for well formed stools passed on a daily basis. Your LLMD may have suggestions for what brand, how much...just make sure they're taken 2 hrs away from antibiotics. Our LLMD prefers they get taken at bedtime so they can sit in the gut overnight. But there's nothing set in stone. I think the thing about being on the lyme path is that, if this is what your child is fighting, then you see progress. Sometimes that progress gets wiped away, but you get to see the parts of your child you've been fighting for and that keeps you going. It's a complicated disease. But you end up rising to the occasion. It's different than Pandas, but no worse IMO.

I gave this book to my 85 yo mom last Mother's Day. She died last October and this will be my first mother's day without her. We never stop needing our moms. This mother's day, my son and daughter both gave me poems. My son's talks about how much love his heart holds when I do simple things, like help him get ready for school or understand his needs. As hard as the past few years have been, the struggles have given us a gift. We are far closer than I think we'd be if we hadn't spent bedtimes reading "Brain Stuck" or talking about the feelings that come with chronic disease. There are times I certainly wish we could be on a different path, but then my kids utter something that makes me stop in my tracks and realize that I wouldn't change who it's made us become. Happy Mother's Day to the most caring and determined mothers (and fathers) I know.

I think you're right. If this article's theory pans out, then how much and what kind of probiotic depends on the individual's "gut type". It could also be why some kids do well on one abx or supplement and others don't. http://www.nytimes.com/2011/04/21/science/21gut.html?_r=1 But we're a long way from being able to say there's one single protocol that works just as much as I doubt there's one single trigger that put us all on this same journey. Until this science gets further along, unfortunately, all we can do is respectfully listen to what works for others and what didn't, maybe give it a try and hope for the best.

Jodie, Can you explain "drainage" vs. detox? Does drainage refer to kidney detox? Thanks, Laura

You may want to read the article I posted in "intro to lyme" thread. It references a 12% chance of infection in the first 24 hrs, then increases thereafter.

My DD started shots last June. They seem to have helped, in that her reactions, which used to start in March when the grass started turning green, didn't start until last week this year (when the birch and oak came into bloom). So the shots seem to have shaved about a month off of her "season" but haven't (yet?) stopped the problem entirely. I suspect she'll be on them for a few years. We have not seen any uptick in her symptoms related to the shots (tho we did have to do a fair amount of ERP therapy to help with the fear of the shot itself). But full disclosure, my daughter is PITANDS, not Pandas (CamK 179, very high antineuronals, C3D immune complexes twelve times above normal). She is being treated for tick borne illnesses.

Yes, awesome job - both of you!! Make sure you celebrate her success - it must've taken a lot of courage and trust on her part. I second philamom - try to get the fear articulated. You may think you're making great progress only to later find out that the OCD fear morphed on you and her mind, in finding a way to touch it, negotiated with OCD and let it devise a new ritual in order to allow her to touch the seed. But if you can get her to utter the fear, some of the spell will be broken and you have a better chance of addressing the root of it, not just the outward ritual. My DD and I play a guessing game. Are you afraid the seed will swallow the house and then burp house juice over the whole neighborhood and smother all the squirrels? (I make up absurd things to get her to laugh) and hopefully after being so ridiculously wide of the mark, she takes pity on me and either confesses the fear or gives me hints so I can get closer to the mark. The root fear is often something I never would've imagined, but once I know it, I can totally understand how it could be terrifying. Then, we're able to develop funny songs and our own anti-OCD "rituals"/exercises that address the fear, not just the compulsion. It can still morph, but it helps her learn to talk about it and name the fear (something she has trouble with even in non-OCD situations). I don't have specific next steps for the dandelions - sounds like you're on the right trail and you're more likely to know what she can tolerate next. If she's able, she may be able to sit with you and make a list of steps she'd like to accomplish in the next week/month (some not too overwhelming timeline). Maybe more seeds in the bag, or just sitting at the table with only one seed out of the bag, a closed bud - where you can see the silk but it's still safely wrapped inside the bud, or eventually a full puff in a windless room...and remember the rewards at each step, even just for trying. Again, congratulations to both of you for your hard work. Sounds like some ice cream is in order!

My DDs sensory and emotional sensitivity issues surface during allergy season, which is understandable when you feel horrible. No OCD per se (she doesn't have tics). But I don't like the effect any of the OTC or prescribed antihistimines have on her. We recently switched to quercetin, a supplement you can get from health food stores (look for it blended with vitamin C and/or bromolein for better absorption). She need to take it a few times a day (this is her worst month due to what's blooming), but no side effects. Something you may want to research.

There's a therapist (not a psychiatrist) in southwestern CT who has lyme/specializing in treating the psychological aspects of lyme. I can PM her info if you want it. But it would be quite a haul for you, unless you tied it in with your other CT visits. And she wouldn't be able to prescribe anything. As for pheresis, I get the thinking about cleansing the toxins, but it's not full blood dialysis. Pheresis is a dialysis of immunoglobulin - the antibodies in the blood. The red blood gets put right back into the body. So you'd be clearing out the antibodies that know how to fight lyme, plus some auto-antibodies that might be attacking the basal ganglia. But I'm not sure how much of the toxins are in the blood plasma vs. what's in the red stuff. In our experience, it was a nice vacation from he**, but it didn't last and it wasn't cheap. I think you might be better working on detox and maybe pulsing abx to give the body a chance to flush stuff out. But I'm no expert. I have nothing to offer re: the SSRIs. If you feel they help but are having trouble getting a script, you can look into SAMe or inositol for the time being. I can PM you articles on them if you're interested.

Michigan Pandas This is an online support group and in reading your post, perhaps your questions haven't been addressed.. First, you may want to browse through the "helpful topics" section at the top of this forum - you'll find many helpful discussions on the science behind Pandas, what it is, doctors who have been helpful, ideas for behavior therapy... next, a strep (or other bacterial) infection can trigger an autoimmune response in some kids. This response triggers many of the behaviors you've listed. Since your daugther re-tested positive for strep, it seems very possible that she has Pandas and there are some steps you might want to consider as you move forward. First, the autoimmune response will continue as long as there's an active infection. If your daughter has Pandas, she needs to be on full strength antibiotics until she clears the infection (most members here have had the best results with azithromycin or augmentin for strep). In theory, once the infection is cleared, you may continue to see symptoms for 6-8 weeks but it should be a downward trend in severity - it takes time for the body to clear the auto-antibodies (the antibodies that attack self) and for inflammatory cytokines to subside. In reality, some kids can't seem to shake the infection or find there are other things that may keep them from returning to baseline. For Pandas kids, they are often susceptible to more than just strep (known as PITANDS) and many kids find it best to stay on a prophylactic dose of antibiotics in order to prevent future episodes. But to find a doctor willing to support this protocol, you will likely need to see a Pandas specialist. There are 4-6 in the country and each has their own preferences for treatment. So who you see depends somewhat on your ability to travel and on your personal feelings on specific treatments (long term antibiotics, IVIG, etc). Being so new to this, I suspect you haven't had time to sort it all out. For now, I'd advocate for full strength antibiotics for as long as you can get them (3-4 weeks) and insist on re-checks until she's cleared. You should also know that in Pandas kids, SSRIs can be "activating" - meaning that a small dose can have a big effect. So if your daughter is on 20 mg zoloft, it's possible that dose could exacerbate her symptoms instead of alleviate them. If you feel that may be the case, you can consider reducing the dose to see if that's more helpful. http://mbldownloads.com/0806PP_Murphy.pdf The local Pandas support group can probably give you some good In-person help and answer more specific questions. If my attempt to answer your post just leaves you more confused, please feel free to ask again. Welcome to the forum!

First, I hope you never feel unwelcome on this forum. I understand why the lyme forum was spun off from the Pandas forum, but really, I think we all just want to help regardless of illness trigger and we all benefit from learning about things that aren't directly related to one disease or another. We're all just sharing what we know and groping our way along. First, what made you consider parasites? Second, what symptoms are the worst (since we all know Pandas symptoms is a pretty wide spectrum)? Third, I don't think it's a bad idea to stop for the time being. It's possible you've just stumbled onto something significant. But it will probably be best to take your next step with the guidance of someone who understands this stuff (an LLMD or a DAN). They can order "poop" tests that look for parasites so you can devise a treatment that targets a specific thing and they can guide you in setting up a detox plan that's best suited for your circumstances (your dd's weight, considering what meds she's on, her diet, the whole picture). I don't think I'd stop pursuing, but I think I'd consider stopping until you get the proper testing, a medical/detox plan in place to manage the fallout - and then I'd go back to war, better knowing the enemy and having support for the child's body and the mom's frayed nerves PS- just saw your first response. FWIW, my DD had the same issues. She continues to need miralax to keep things moving. Theralac probiotic 5x/wk and TruFlora 2x/wk has taken care of her chronic yeast issues. 6 months of ruling other things out before starting treatment for bartonella. Problems not "solved" but doing much better on a Tick Borne Illness protocol.

Desperate- Because some lyme diagnoses and treatments are controversial, it's in everyone's best interest to not use a doctor's name or location in a public post. Most lyme forums ask that you only refer to Dr G. and if someone wants to know a full name or location, they can PM you. So if you wouldn't mind, can you please go back and edit your post to remove the full name and location? Thanks... Also, for what it's worth, your doctor's billing arrangement is quite common among LLMDs. They often spend much longer with a patient than insurance companies deem necessary, so the insurance companies would only reimburse the Usual and Customary Rate for a half hour visit when the doctor actually spent 45 min - 2 hrs with you. So the docs ask you to pay out of pocket and give you a claim form to submit for whatever reimbursement your insurance co. will provide. It takes them out of the loop and keeps them from being "short changed" for their time. Same with Igenex. If you have an HSA, you can have money deducted pre-tax and then use those funds to pay for doc visits and supplements prescribed by your doctor (as of 2011, I don't believe you can use HSA funds to buy OTC supplements, but ones ordered by your doctor are ok).

http://naturalnutmeg.com/?p=1000 Thought this overview might be helpful to anyone new to the neighborhood or to help family members understand what's going on. I liked it because there are some statistics that answer some recently asked questions, such as how long it takes to get infected.

I think the more concerning question is why is she refusing to take meds? Without meds, things could continue to spiral, regardless of the setting. Are you using any ERP/CBT tools? What's driving the situation?