KaraM

... then I tried to pray for awhile... I've never been super religious, but have found myself saying the Serenity Prayer a lot...... Grant me the serenity to accept the things I can not change The courage to change the things I can And the wisdom to know the difference May this work for us all....

What about Yale where Leckman is???? I don't have any experience....just picking up on someone else's mentioning hi sname earlier....

I feel so much for you. We've had very similar experiences with contamination as well as the talks of dying, wishing she weren't alive. She even asked my dh to kill her. I'm so sorry for what you are going through. I'm wondering about the betonite clay and when you are giving it to her relative to the abx. I've never used the betonite clay. It's supposed to help with detox, right? Is it a binding agent, like charcoal? If it is, then I believe it should not be given close in time to the abx. Our LLMD said not to give the charcoal close in time to the abx or it would just negate the effects of the abx, by binding to them and eliminating the abx from the body. Maybe this is a question to ask your do (or maybe others here can chime in.) Kara

Are they testing (or have you already) for anything else, like Myco Plasma (heard that really causes aggresive/violent rages), not to mention Lyme and other Tick Born illnesses. Just in case the strep blood tests come back negative, it is not reason to rule out PANDAS or PITAND. This whole MARCONs discussion on the Lyme board makes me wonder, too. MARCONS is an antiboitic resistant strain of staph (I think), alhtough in your dd's case, if she' not on abx, maybe this doesn't make sense right now. You are in my thoughts. Trust your gut and keep up the fight. Do you have a PANDAS doc already that can consult? Kara

I'm sorry, Wilma, but I forget. Was she tested for Lyme and co-infections. Steroids did nothing for us...doc couldn't understand why. Then we found Bartonella...

Thanks!

Yes...you're story was very enlightening. So, I know I can test for mold in the house...but is there a way to test a person to see if they are having a reaction to mold? Thanks, Kara

Hi Dan, We had our first visit last month with a family practitioner in Newton, MA. We went to her because our PANDAS dd9 was also diagnosed with Bartonella and possibly Lyme. She is an LLMD. Anyway, she is not a PANDAS expert, but I do think she is open minded and would consult with other docs (I believe she consults with Dr. J on Lyme). She's has a wholistic approach and utilizes both traditional meds and herbs/homopathic. It might be worth giving her a call and seeing how she would approach PANDAS... She does not take insurance, though. So you would have to get reimbursed directly from your insurance company. PM me if you want more details, etc. Kara

She does have minor pollen allergies. We've been giving her Zyrtec for the past week or so. I don't think I've noticed a reaction positive or negative, but I'll pay morea attenrion. Thanks, Kara

I'll be thinking of you. I wish I could do more. Kara

Even though it can be something other than strep, to you think it could be the same "rogue" antibody?

I'll meet you any time, any where! (It'll keep me from drinking alone )

I think, but am not sure, that it is a yet to be identified "rogue" antibody, and not and ASO or AntiDNase antibody. So, while some may get a rise in ASO or AntiDNase B titers with an infection, it is not those specific antibodies that are attacking the brain.. So the way I interpret it (which may or may not be correct) is that the rogue antibody (which may also be triggered by strep) is what is attacking the brain. So you may or may not see the ASO and/or Anti DNase B. (Someone please correct me if I'm misunderstanding...I'm not even sure if titers and antibodies are the same thing or just related in some way... )

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

:lol: Biggest laugh I've had all day!!! Thanks! ( i mean it...)

I posted this on the PANDAS board too - so ignore if you read there.... I feel like crap right now. My dd8 has been slowly improving. When I think about where we were 8 weeks ago, I realize she has come a long way. I am truly thankful for this. Yet in spite of my thankfulness and relief that she's headed in the right direction, I ended up in a yelling match with her today over homework and her inability to focus, understand (yes it was math). I haven't yelled like I did in a long time... However, I find that after having a day or two where things go relatively smoothly (clearly not perfect, but, as I think you all understand, everything is relative), when my dd has an "issue," either OCD, rage, whatever, I have less patience with her than when these behaviors were a constant. Please tell me I'm not alone in feeling/acting this way. On a different note, I keep wondering about seasonaltiy. The timing of everything we are experiencing is almost identical to last year. Her OCD started showing in the fall, got intense during the winter, then, at the end of March last year, started abx. Improved over the next couple of months and had a great summer. Even though she stayed on abx, her OCD returned in the fall, was intense during the winter. We started Bartonella treatment at the end of March and she has (with some clear ups and downs) been improving overall. Our pediatrician has said it, friends, teachers, and even I, notice the correspondence with the seasons....Does this happen with anyone else? I know it could be less exposure, more time outdoors, etc. But could Seasonal AFfective Disorder be part of it or something like that? Thanks, Kara

I feel like crap right now. My dd8 has been slowly improving. When I think about where we were 8 weeks ago, I realize she has come a long way. I am truly thankful for this. Yet in spite of my thankfulness and relief that she's headed in the right direction, I ended up in a yelling match with her today over homework and her inability to focus, understand (yes it was math). I haven't yelled like I did in a long time... However, I find that after having a day or two where things go relatively smoothly (clearly not perfect, but, as I think you all understand, everything is relative), when my dd has an "issue," either OCD, rage, whatever, I have less patience with her than when these behaviors were a constant. Please tell me I'm not alone in feeling/acting this way. On a different note, I keep wondering about seasonaltiy. The timing of everything we are experiencing is almost identical to last year. Her OCD started showing in the fall, got intense during the winter, then, at the end of March last year, started abx. Improved over the next couple of months and had a great summer. Even though she stayed on abx, her OCD returned in the fall, was intense during the winter. We started Bartonella treatment at the end of March and she has (with some clear ups and downs) been improving overall. Our pediatrician has said it, friends, teachers, and even I, notice the correspondence with the seasons....Does this happen with anyone else? I know it could be less exposure, more time outdoors, etc. But could Seasonal AFfective Disorder be part of it or something like that? Thanks, Kara

I've never been quite sure if the iburprofin helped or not. For us it was never clear (although I did it anyway since so many had positive reports). My dd's pupils were also never hugely dilated the way some describe (maybe a little, but it's hard to say). So for my dd, I'm wondering whether PANDAS was every really the issue or whether we've just been dealing with Bartonella all along and strep coincidentally occurred at the same time....Not sure I'll ever have an answer, or whether it really matters for her at this point. But it may be a distinction in the future for others if we can ever get some research done around it...

This has been nagging at me, too. I keep hearing from others here (or a comment by Dr. J's assitant) about the connection between OCD and Bartonella, but finding something more detailed, formal, official... has been close to impossible. I also keep thinking there has to be a connection between Lyme/TBIs and strep. In Cure Unknown, there is a paragpraph that discussess how Dr. J was one of the first to treat Lyme as a bacterial infection (in the 70s??) because so many of his patients coming for Lyme treatment also had strep and when he treated the strep with abx, their Lyme symptoms improved. The other thing I wonder about is what is happening with the brain. Is it inflammation due to antibodies attacking the brain as stated in PANDAS? Or is the Baronella infection actually in the brain somewhere wreaking havoc and inflammation has nothing to do with it??? Sorry if I'm an accomplice to hijacking....

I am no expert by any means. But it seems like after starting Bartonella treatment at the end of March, my dd9 would get some extreme behavior/psych symptom that would intensify for 2-3 days, then decrease. So at first it was the rages that came back for t 2 - 3 days. Then they reduced significantly. Then a week or so later, hyperactivity set in - running around, flailing arms, etc., for 2 - 3 days. Then that decreased substantially. Then another week or so later, doom and gloom, nothing could make her happy...." That seems to have gone away for the most part, too. I'm thinking these were herxing episodes, but who knows for sure. Since the doom and gloom, we haven't had any major changes in behavior/personality. Her OCD seemed to be slowly improving through the course of all of this. We still have a ways to go on that front, but I think we're heading in the right direction (God I hope I'm not jinxing us). She is on Zithromax and Bactrim. We give her fish oil, Culturelle and Saccho Boulardis. When she would go into the possible herxing, we also had her take Epsom Salt/Baking Soda baths and give her Activated Charcoal. I can't really say whether they helped or whether the herxing just passed on its own. So long response for a short answer that I think it can come and go in 2 - 3 day increments. Kara

I was just going to say the ask the same thing...has any doctor suggested testing forr Lyme, some other tick borne infection, or possibly a parasite that cycles??

Hi, I know there are a lot of former (and current) PANDAS people on here, so thought I should post here as well. I just emailed Dr. C and Kahty Alvarez giving them a bit of an update on my dd9. When we did the test in March 2010, my dd had had positive strep blood tests, so we just assumed all the OCD, etc. was due to PANDAS. But my dd recently tested positive for Bartonella and may have Lyme as well. Even though they don't formally collect data after the fact, I thought Dr. C and her staff may be interested in the information in case the anecdoatel information would help them in deciding future research paths. So I sent an update. Kathy Alvarez emailed me back shortly afterward thanking me for the update and saying they wished more people would keep them apprised of how their kids are doing. I told her I would post this request if she wanted me to (and she did). So, if you have done the test and want to let them know how your child is doing (and what they've done for treatment, etc), then send Kathy an email. Her email is: Kathy-Alvarez@ouhsc.edu Kara

Hi, I just emailed Dr. C and Kahty Alvarez giving them a bit of an update on my dd9. When we did the test in March 2010, my dd had had positive strep blood tests, so we just assumed all the OCD, etc. was due to PANDAS. She recently tested positive for Bartonella and may have Lyme as well. Even though they don't formally collect data after the fact, I thought Dr. C and her staff may be interested in the information in case the anecdoatel information would help them in deciding future research paths. So I sent an update. Kathy Alvarez emailed me back shortly afterward thanking me for the update and saying they wished more people would keep them apprised of how their kids are doing. I told her I would post this request if she wanted me to (and she did). So, if you have done the test and want to let them know how your child is doing (and what they've done for treatment, etc), then send Kathy an email. Her email is: Kathy-Alvarez@ouhsc.edu Kara

We were advised by our PANDAS doc not to do the booster or any other vaccines for our dd8 (whose tetanus antibodies were on the low side indicating she was probably due for a booster). He did not want to stimulate her immune system in any way.

There is a pretty comprehensive list on the FAQ that PANDAS Resource Network has on their site. Make sure to scroll down. it's more comprehensive than those first mentioned in the Symptoms question. Here is a link. http://www.pandasresourcenetwork.org/about-pandas/pandas-faqs.html