LNN

I'd take pictures of the rash and then head to the pedi for a swab and culture. At the risk of making some roll their eyes, tick illnesses can cause rashes as well, as toxins are released. That's why some photos may be helpful if you end up seeing specialists.

No, I'm just stalking you!! There are others closer to you who can probably give you scoop on LLMDs. I'm in New England. Helpful threads also has suggestions on finding doctors. personally, I wouldn't spend any money on re-running labs until you get in front of the doctor who's going to treat your DD. They may use labs that take insurance and/or feel that different tests or no additional tests are needed. Good luck (logging off now - you are safe )

FYI - I fixed the links in the helpful threads post. If they don't work (they did when I just tested them, but you never know), let me know and I'll try again. What part of the country are you in - and do you have a preference for protocols - aggressive abx, mix of abx+ naturals?

you can see if these links are helpful Explaining Western Blot tests: http://flash.lymenet...TML/022767.html WB for Lyme: http://www.anapsid.org/lyme/wb.html Understanding the WB: http://www.lymenet.d...sts/brenner.htm also check out the "helpful threads" section of the lyme forum for finding an LLMD. Not sure where you're located.

Kara, It sounds like you do a lot of homework and are very proactive in chasing things down! I think with your borderline strep titers and list of symptoms, it makes sense to consider Pandas. But you may want to re-check titers periodically (maybe in two months, then again 4 months later?) just to establish a history and baseline. It's the movement of the numbers, more than the numeric value, that are most telling. My only advice would be to keep an open mind. I found out the hard way that Pandas symptoms and "lyme" symptoms can be very similar. (lyme meaning a variety of tick-borne illnesses). This is a polarizing subject and like Michael, I'd suggest you post a similar list of questions on the lyme forum. I'm not aware of heavy metals being associated with Pandas, but you come across the topic fairly often in the lyme literature as well as autism literature. Celiacs and yeast can also contribute to many behaviors you'll see listed for Pandas and lyme. So there's a slew of things to sift thru. There may be mutliple issues at play. But you'll find good info on this forum in terms of tests and also good advice on coping with behaviors, such as CBT and ERP therapies. The one thing I'm not clear on from your posts - is your son currently on antibiotics, and did you see any change if/when he was on them?

Out of desperation, we jumped right in this past Friday night and started at 350mg. Seems to have worked wonders, with no side effects that I could see. The owner of our health food store loves Gaia products, but because their pills were lower dose, we'd have ahd to give three across the day and since DS is already taking many pills, I opted for Solara's one pill with 350mg. The owner said some milk thistle can be bound to some other ingredient (didn't catch the name) and it can make the capsule more of an extended release. But she only had the regular stuff on hand. The Mayo Clinic does write ups on herbs and here's their take on dosing http://www.mayoclinic.com/health/silymarin/NS_patient-milkthistle/DSECTION=dosing If anyone knows of a brand I can use or the name of that extended release binding agent, I'd love to know. As for taking with other supplements, we opted to take at bedtime along with probiotics and vitamins so it would sit in the body for a longer period of time. No idea if that's right. I'll be asking LLMD when we go in 4 weeks. There's just so many hours in a day where you can get all this stuff into their little bodies, especially on school days!

The directions on the box say to only do the drops twice a week, although many LLMDs dose more frequently. But if you start to feel really bad, just know that you can back off. Be forewarned - the stuff is not cheap. We paid $89 for a bottle. Granted, it lasts a long time, but it's a significant up-front cost, especially if you're not sure you have a TBI. You might also look into samento or some other herbal treatments, which might be lower cost for an experiment. I'm not very knowledgeable about the herbals, but you can go to google books and browse large chunks of chapters. You might be able to search on lyme treatments and find some very useful info. http://books.google.com/books?id=J4TFtQeHkQAC&pg=PA174&lpg=PA174&dq=milk+thistle+detox+lyme&source=bl&ots=-sGP1503hp&sig=lZ1jCRXRDg9dHn3Pgyc_Y704MEs&hl=en&ei=YhiNTavyLuaJ0QH1ypWzCw&sa=X&oi=book_result&ct=result&resnum=4&ved=0CC8Q6AEwAw#v=onepage&q&f=false I was googling milk thistle, but you can use this link as a spring board to search on other lyme books.

My kids' OCD went away with the right abx combo as well. My Pandas son was on augmentin XR and our LLMD kept him on that thru the winter. Plus zith+bactrim. Adding just the zith did nothing. Adding the bactrim, we saw big improvements in a matter of weeks. Stayed on that thru the winter. Then plateaued, then backslid. So we just dropped the augmentin and added omnicef- holy cow! Big herx, return of OCD. But it's subsiding. We add tindamax in a week. For my daughter, her OCD was worse than his, with intrusive thoughts. But within 24 hrs of just starting zith only, it dropped from a 7 to a 2. Then she got a sinus infection and ramped up to an 8. Pedi added omnicef for 10 days and again, within 24 hrs of the abx, dropped to a 4, then a 2, then nothing by the time the omnicef ended. Stayed on just zith for a month. I thought maybe it was Pandas and zith alone would do it. But small blips made me worry. So we added bactrim and she mildly herxed for a few days. OCD returned. Upped the detox and it went away. So I think it's a matter of hitting upon the right abx combo and realizing the "right" recipe will change over time. In the meantime, we've done lots of ERP and CBT and that makes a big difference for the periods that OCD rears its ugly ahead again. Doesn't make it go away, but allows us to function. So for my kids, it's the right abx + detox + ERP. No single thing has been a magic bullet. But between them, we're getting there...

You should contact DCmom - she's in that general area. Also, unless the student is from the area, she can also look for an LLMD in her home town area. With summer coming, that might work just as well for her. You might also contact the NJ lyme group - they are quite active and might even be able to suggest an open minded general doc just to order Igenex.

I totally hear you. I've been there a few times and I wasn't faced with a situation nearly as tough as yours. You aren't being pushy. You're being an advocate. You may not be able to do a full program until the summer, but I think any foundation you can build in the meantime will help. The most important thing you can do is put yourself on the same side of the battle with your daughter. Make sure she sees you as a coach and team member, not an adversary. OCD likes enemies and will use that to isolate your daughter more. That said, I'll contradict myself and mention an idea for "sneaking" something into your drinks...We successfully used inositol to decrease the intensity of OCD. It's easily dissolved and hidden in any sweet drink - drink yogurts, flavored milk, juice...it has a barely noticeable sweet taste, like powdered sugar. If you're desperate, you could try that to take things down a notch. I can send you a few articles and what we used for dosing if you think you might be able to try it. I doubt it would be a miracle drug, but it might help you get to July in one piece. Try to hang in there. I know it sounds hollow right now, but you will get through this. You have no choice! Laura

I don't know if 6 weeks is long in terms of lyme expectations, but it's a lifetime when it comes to coping with ODD and OCD! I'm far from well-versed in lyme treatment - seems there are as many protocols/philosophies as there are chili recipes at a chili cook-off. But we just weathered a bad herx last week starting omnicef and in my PTSD state, it took me back to places I never wanted to deal with again. We're supposed to start tindamax this coming weekend. Nervous... It seems that in a bad herx, you can have a lot of self-doubt, not at all sure if what you're seeing is herxing or just that the lyme stuff is rampant and the abx are doing absolutely nothing. There's really no way to tell the difference when you're in the middle of it. What seemed to help for us was detox. We were already doing glutathione and fiber to encourage daily BMs, lots of water, but out of desperation on Friday night (it's always when the doctor's office is closed), I went to the health food store and got some milk thistle. I don't know if it was that or simply a matter of time, but the weekend was much much better. DS was acutally NICE to his sister, which happens about twice a year. And the issue that brought a 30 min meltdown on Friday was handled in a normal kid way yesterday. So for your own sanity and the health of the rest of your family, I'd do some reading up on detox options. As for the T&A - not sure what to say. Depends on whether he's really getting strep/infections or if it's just a symptom. My son had a T&A two years ago for Pandas and hasn't had strep since. But even now, he'll wake up complaining of a sore throat and one gland will be swollen (asymmetrical lymph node swelling is a bartonella thing). It usually goes away as the day goes on and he's vertical. But if your think it's a real infection, then it might be worth discussing with your LLMD. I did find it helpful to do some ERP and CBT - as much to help me cope as DS. It gave me a sense that I had an emergency plan and we were able to go to a comfort zone, knowing that we had tools that would help us survive. It was the abx/detox that ultimately brought the OCD stuff down, but it helped to have roles we knew how to play in the meantime. I hope you see some improvements soon. You must all be exhausted.

If it's any consolation, we saw similar lack of impulse control a few weeks after what I believe was "the" tick bite when my DS was in kindergarten (took another 2.5 yrs to realize this was our root cause). Obviously, attacking the root cause will help everything else. But even with meds, you'll likely see bad times as you do battle. So there are two things I'd work on, with the mind set that this will be something you're dealing with for the next 1-2 years... First, I'd introduce the ideas of CBT/ERP to your son. Name the impulsivity - call it the whacky monster, or the bouncy bug or whatever name seems to resonate. Explain that it's trying to keep all of your son's attention and get him in trouble. Then discuss strategies you're going to use a s a team to get control of the bug. For yourself, you can read Freeing your child from OCD by Tamar Chansky and What to Do When Your Brain Gets Stuck - it's probably over your son's head, but for you, it will give you some ideas on how to build baby steps toward helping your son take control and develop a reward system for every time he's able to control himself. The idea is just to see the behavior as a third party - an enemy, and to put yourself on the same team as your son and together, develop strategies that help him be the boss and in control. You can go to the Dollar store and get lots of small prizes as rewards for when he stays in control, or make coupons for things like staying up late, or an extra dessert, or extra alone time with you. The second thing I'd do is focus on ADHD strategies for when he's supposed to learn something. My son found it very helpful to squeeze a rubber ball while he was reading, or to stand when he was writing, or to take small breaks and walk around the dining room table after writing one sentence of his homework. Some kids find it helpful to chew gum, or suck on a candy. If he's supposed to pay attention while you read him a book, let him drum his hands on his legs or play with a rubber band on his fingers. Doing two things at once seems to help ADHD kids. Every time he meets a goal, celebrate. The more he feels successful, the more it can build on itself. Yes, it's only pre-k. And as my son got older (and healthier) the impulsivity got much much better. So some of it is just age-related. But helping him learn to be the boss of his own behaviors is a great foundation for any kid, but especially for one who's going to be doing battle with microbes that alter behaviors.

Dedee, Have you spoken to Dr Murphy or Dr Storch about an ERP plan for your daughter's medication fears? This seems to be the biggest obstacle to getting her well and is holding all of you hostage to the OCD. I'm guessing it would be easier to start with a liquid to avoid any sensation of choking on something. Maybe you could start by pouring a little colored water in a medicine cup. Tell her it's medicine. Then practice having her just hold the cup, or touching the liquid with her finger, then putting a drop on her finger and touching it to her lips, then working up to having her put one drop on her tongue... For each step, have a huge reward. Help her understand that the OCD monster is the enemy keeping her sick so it can get all the attention and she needs to beat it by putting this liquid in her body. You can do a little science experiment with her and put a small mound of sugar or salt on the counter. Have her add a few drops of water to the pile and watch the sugar dissolve. Ask her what the water did to the sugar (melted it/destroyed it). Then ask her if the water did the same thing to her (no). Try to carry that over and explain that the medicine (the colored water) will do the same in her body. That medicine can melt the OCD monster but it won't harm her body. Once you've succeeded in getting her to drink a dose of colored water medicine, then switch over to liquid zith and tell her it's just a better OCD medicine. I'm sure this plan has gaps in it - but you get the idea. Start with something that you can afford to waste - whether it's colored water or liquid motrin. Then switch over to the real thing. If you don't have it already, I'd recommend "What to Do When Your Brain Gets Stuck" to help you build a plan, and also do a consult with Storch or Murphy to help you develop a baby-step plan to get over the medicine fear. I think I remember your mentioning an option of having your daughter undergo a month of on site ERP treatment at UFL - would it be possible to do an on site program, with the goal of getting her to take her daily zith as part of the on site therapy? That way, you could be doing ERP, getting meds into her as part of that process, and as zith started to work, you might see the OCD get weaker, and she'd be better able to fight her meds aversion. It could feed on itself. Maybe speak to Murphy about customizing a plan? This must be heart breaking for you. I hope you guys are able to catch a break soon.

Our LLMD said to only use water with the herbs (I had asked about juice). But it's just one drop so far. Seems a stretch that one drop could produce a change when he had already taken a week of the stuff with little effect. Guess I'm reaching. Just to clarify - we dropped the XR and added the omnicef a week ago. No other change except the one drop of A-Bart. Yes, we have a bartonella dx in addition to the lyme.

So I was googling lyme and stumbled across google books - a place you can search a topic, get "hits" and preview extensive excerpts from the book - in some cases large portions of chapters, not just one or two pages and the TOC. http://www.google.com/search?tbm=bks&tbo=1&q=lyme&btnG=Search+Books Thought I'd pass it along for others who are on a budget...in some cases, I was able to check out a book and then see if the local library had it.

What do you mean "test" for A-Bart? This week we re-started A-Bart (DS did it for a week and then refused - a month later, we're re-starting after promising LLMD he'd take it twice a week). But the taste, or smell, or maybe just bad memories/psych out - made DS gag (with only 1 drop mixed with water). This was right after dinner and taking bactrim, zith and omnicef. So the fear was that he'd end up barfing out all of his meds if he took the A-Bart at dinner time. We're going to try 4pm with a snack tomorrow (will try do do Thur + Sun). Any thoughts? Also, would one drop of A-Bart produce any significant herx? He took it for a week last month and we saw no noticeable changes. But we changed from augmentin XR to omnicef last week and were weathering a pretty significant herx that we thought was starting to wane. But then yesterday (Fri) was really ugly. Didn't think it could be A-Bart on only one drop. So I started milk thistle last night at bedtime (is it ok to take with probiotics and vitamins?). Today is not great but better. Supposed to add tindamax next weekend and my nerves are shot just at the thought of it.

I think it is more than just semantics. My understanding - and I could be wrong - is that Dr Swedo, Leckman, Dr L et al do not speak about IVIG as a permanent cure - rather a treatment to halt an intense/extreme episode, and define success as 70-75% improvement w/in 3 months. But that future episodes are always possible, or possible until late teens-twenties, with a diminishing sensitivity as the person ages. If I didn't misunderstand Dr K. at IOCDF, he also uses 70-75% as a definition of "success" but I think he differs in that he feels - or at least once felt - that one IVIG was sufficient to prevent any future exacerbations (maybe with the caveat that you had to keep the immune system calm and strep-free for a long period of time (e.g. a year)). In a minority of patients, a second IVIG might be needed if a second illness toppled the apple cart. But I haven't heard if his thinking has changed since then. I think Dr B takes it a step further and feels mulitple HD IVIGs, 8 weeks apart, can re-train the immune system and alter B cells. I don't think this view is shared by others and that he's either going to be proven a successful pioneer or his patients will end up providing evidence to the contrary. I do believe the "threshold" for when to do IVIG is up to the parent. Perhaps the Yale study, if they can show that early intervention with IVIG yields success, may change that. But right now, I think the threshold is more financial/insurance based, combined with a parent's comfort level for the risks. It isn't like you have to have a certain Y-Bocs score or certain blood test results. I can't really speak to your last question, as I share your confusion. I could get it of only one were required - ala Kawasaki's Disease - or if it were considered chronic and you'd need it all the time - ala CVID. But I don't understand immunology enough to grasp how you can turn off B cells. As for the BBB - if you can keep it closed, then the autoimmune issue goes away, even if the body is still making auto-antibodies. It's the breach of the BBB that lets the horse out of the barn. But again, just my understanding from various conference presentations. Don't want to sound like I have any insight to anyone's treatment philosophy.

6 weeks is a long time to try to manage this with two kids. You may want to consider asking DR J about backing off the tindamax and adding it back in later if it starts to be more than your family can handle. For the longest time, during this whole Pandas/lyme battle, I've always thought I could/would handle whatever came our way, so long as it got my kids healthy. I now realize I've suffered some collateral damage and while my son has no memory of his horrible tics and meltdowns, they haunt me on a regular basis. So don't feel you have to kill it all in one fell swoop. Consider the effects on your whole family and pace yourselves. If you're not doing a lot of detox, you can consider adding alpha-lipoic acid, glutathione, charcoal, clay or maybe some other things I'm not familiar with. I hope you start to see enough improvement to lift your spirits and help you keep going.

Totally agree that lyme testing is crappy - and expensive. That's why it remains a clinical diagnosis, just like Pandas. You'd never tell a parent whose child had many Pandas symptoms to not treat with abx just because they had no known strep, or a negative throat culture, or negative ASO/Anti DNase B titers. You gather as much info as you can from labs, and hope they support and guide your treatment. But neither disease has an "aha" conclusive test. You have to go on symptoms and pray for a positive response to any given treatment. I'm sorry for your frustrations and completely understand them. Same frustration I felt when we did the Pandas treatments we were supposed to and didn't get the response we had "paid for". We are all in crappy lifeboats with spoons instead of oars. In the end, you're doing what you personally feel to be right - treating your son based on symptoms and a few lyme-indicative bands and letting sleeping dogs lie for yourself. Makes sense. I've made similar decisions for my family. I truly hope your son sees positive results with an llmd-guided protocal and your gut proves to be spot on, regardless of the label you ultimately put on his condition. Best of luck!

My personal plan is to drop notes to those I know in the community and say Thank You - either for the work they do or for just doing their best to raise a child who can bring unique gifts and lessons to the world.

In a sense, we pay to get results because they are often reviewed during an office visit and we pay for the talk time. I think if it's a general test that requires little interpretation or explanation, I would be upset. But if the test required a doctor to put the results into context or tie them to my child's medical picture (well, we suspected 1 but this result indicates 2 or may mean 3) then I can understand how a doctor may feel it's important to have a consult and would therefore want to be compensated. I can see both sides.

so how does that fit with Swedo's original concept that if IVIG was going to help, it would on the first? or is that now seen as old research and not the current thought? thanks. As of last year, she was saying that if it was Pandas, then only one IVIG should be needed. However, I think her definition of success - and this is only my understanding- is something like 75-80% improvement after 3 months. She indicated that IVIG should end an episode but doesn't prevent future episodes. I got the impression she didn't feel multiple IVIGs could achieve this. My understanding is that Dr B disagrees and is using multiple IVIGs in the hopes of preventing future episodes, or closer to what we would call a "cure". But others may have better insight.

Congratulations!! Sounds like a little family celebration is order for all the hard work (on everyone's part)! One thing to think about since his teacher seems to have found strategies that really work - maybe ask her to keep a running list of things that work and then maybe at the end of the year, compose a note for next year's teacher, written in teacher-speak. Sometimes teachers have a way of describing things in their "lingo" that makes it sound more official, more methodical and it's more readily accepted by a new teacher. May come across as a helpful passing of the torch instead of a worried mom trying to tell the new teacher how to handle her son. I've found that teachers accept any aspect of my son's diagnosis (OCD, dysgraphia) more readily when it's communicated by a doctor or other teacher. And you won't need to reinvent the wheel. One other thought - maybe have your son draw a thank you picture for the teacher, or make her an award too. Olympians get to the podium on the shoulders of their coaches and families. A big thank you to her may really lift her sails. Congratulations again!

IVIG is used as a matter of course for Kawasaki's Disease - and KD typically appears in kids younger than 5. So not sure why it would be considered risky simply due to the age of the child.

I feel the same way as Susan, and also hesitated replying. I don't want to stir the pot. But to answer your question, I think when someone says your posts about lyme are "annoying" and suggests that if you opt to test for lyme, you are just succumbing to peer pressure and not thinking for yourself, the tone comes across as unwelcoming and well, disrespectful. You and I have had this conversation before and I don't want to have it again. But this is how it makes me feel. The "drama" for me doesn't come from people disagreeing or stating their points of views. I think that's very healthy and important. It's in the particular words and tones that get used. Just my feelings on the matter.