KaraM

Do you only want pandas (strep as cause) or pitand (including Lyme etc) responses as well? Would you also want to know what other infection are involved? Thanks, Kara

My dd used to get freqently. But they stopped when we started the abx. When we missed a few days they started again. She has bartonella, Lyme and ehrlichiosis. Is on Zithromax and bactrim.

Thank you, LLM. You are always so good about having studies, etc. I don't know where you get the energy to find all the information you do. I feel like I've run out of steam myself, so I am incredibly grateful that you've looked into this.

My dd9 is on Tindamax 2x/week. I was spending the weekend with an old friend of mine who is a doctor/famiy practitioner. I updated her on dd and mentioned her antibiotic regimen including the Tindamax. She looked it up and mentioned a black box warning about it being a possible carcinogen. Our doctor never mentioned anything about this. Has anyone else discussed this with their doctors. I appreciate any thoughts. I just got home and looked it up myself and foudn the following:Tinidazole Carcinogenecity has been seen in mice and rats treated chronically with metronidazole, another agent in the nitroimidazole class. Although such data has not been reported with tinidazole, the two drugs are structurally related and have similar biological effects. Unnecessary use of this drug should be avoided. Use should be reserved for conditions described in indications and usage

Colleen, My daughtet tested positive for ehrlichiosis as well. She also had bartonella and lyme as well. The only symptoms I could ever find listed for ehrlichiosis were physical, not neuropsych. So I think you would be wise to do further testing for coinfectons that are known to cause neuropsych symptoms like bartonella and Lyme. Kara

I recommend that you see Dr. Bouboulis. He is located in Darien, CT. He also has a Stamford, CT office that he is at one day a week. He will do a complete work up on your child to determine what is going on with his immune system. My dd9 has been on antibiotics for almost two years now. In addition to Zith, which she started for PANDAS treatment, she is also on Bactrim and, on the weekends, Tindamax as well. These are to treat Lyme and Bartonella, which, with the help of Dr. B., we discovered a year after the PANDAS diagnosis. The biggest worry with such high levels of antibiotics is damage to the gut. That can be prevented with good probitiotics. My understanding about antibiotic resistant strains of bacteria is that they are created when you under treat an infection, not over treat it. (I, however, am not a doctor or scientist, so you may want to confirm that).

Has anyone seen Dr. Robert Sundel at CHB? Our pediatrician recommended we see him after our dd was diagnosed with Lyme. He (our pediatrician) recognizes our dd's autoimmune isses (but doesn't really feel comfortable treating himself). He siad Dr. Sundel directs an autoimmune center at Children's and is well regarded in terms of Lyme Disease evaluations and autoimmune disease evaluations in general. (By whom he is well regarded, I'm not sure, either, and there are two very distinct camps when it comes to Lyme). We never went to see him. Having heard negative things about CHB with regards to PANDAS, etc., we just went for Dr. J instead. But since your friends son is already there, maybe it would be worth a shot to see this doctor. If anyone has seen him, please pm the original poster and me if you don't think it makes sense. If you think he's good, by all means let us all know! Kara

OK - my first reaction was...is she really teaching a 5 year old to be an attacking force? Did I mis-read that? Something doesn't sit well with me. Maybe that's what the child was reacting too... I actually think she needs a fourth reason on her list of three and that is how infections and faulty auto-immune reactions can cause these neuropsych anger, rage issues. I do agree it hits a chord and I wonder about the reason behind the child's reaction...but I'm not sure I want it to do viral since it really doesn't educate about PANS/PANDAS/PITAND as a possible culprit. (Please don't take this the wrong way...just my reaction...healthy debate, not argumentative....thanks for posting) Kara

Are you giving her any probiotics to replace the good bacteria in the gut that the antibiotics destroy.

It does come in powder form as well...you can get it online or at Whole Foods (in the liver section) or other health stores. I've heard it is better to introduce slowly, because it can make you pretty gassy. Increasing a bit at a time gives the digestive system time to adjust.

That is great news!! Congratulations!

Hi, I have a feeling I'm going to get a variety of answers here, but I'll ask anyway. I know a number of you have pulsed Tindamax to treat Lyme cysts. We are about to do 2 days on, 5 days off. What kind of herx did you get? My dd10 is doing really well right now after 7 months of Bartonella treatment (Zith and Bactrim). Dr. J. recommended we add the Tindamax with the hope that it will get her the rest of the way there. I'm scared to death of a herx. Have any of you been in a similar situation...doing well, but not 100%, then added a cyst buster? If yes, how did it go? Thanks, Kara

First off, I agree with 911RN's advice about getting to the bottom of the sinusitis. A regular lab can test for Bartonella and Ehrlichiosis. I had my general practitioner order them. I imagine some others can be tested as well, but am not sure. Someone from the Lyme board I'm sure can answer that. The big difference with IgeneX Lyme from my understanding is that they test for more bands (some that are specific to Borrellia) that other labs don't test for. I think the way they present their results is different as well....showing how you performed on each and every band tested. The test itself may also be more sensitive (I'm not positive about this, though). To be honest with you, I'm not sure if she has PANDAS in addition to the tick born illnesses or it's been the tick born illnesses all along. She did have slightly elevated strep titers along with the sudden onset (over the course of a couple of months for her) and she responded to antibiotics. So that's how the PANDAS diagnosis was made. But it looks to me, based on this last visit at the LLMD, that she had the Lyme at the same time. Maybe both? Maybe just t.b.i. I'll always relate to the PANDAS family, though.... Interesting note, the doctor said they did a "tick drag" where they collected and analyzed a bunch of ticks. He said they found group A strep in many of them.... Maybe that's why so many of the Lyme affected kids started out as PANDAS....just hypothesizing here. No one really knows, do we???

you sound like you could be my long lost twin sister....

No...different Dr. H. Was in Newton, now Watertown, MA.

Thanks. It is spreading already...she now has a few on her back. I am going to make an appointment with a dermatologist regardless, just to get an opinion on how best to treat. I'll mention the Zymaderm. Thanks for your input. Kara

NMom and Bigmighty, I PM'd you both. Kara

Just noticed you are in MD. Have you tried to get an appointment with Dr. Latimer? She is in MD I believe. A few of the other PANDAS docs are on the east coast...Dr. T in NJ and Dr. B in CT.

Have you seen this document. It mentions some other illnesses. http://www.ocfoundation.org/EO_PANDAS.aspx My child had Bartonella. In addition to Lyme, was yours tested for other tick born illnesses like Bartonella, Ehrlichiosis, Babesiosis, Ricksettia? Is your child still on antibiotics or has she been on and off different the ones you mentioned but all only for a short period? Many PANDAS kids need to stay on antibiotics prophylactially. Where in the country are you located?

Can you elaborate on what the results were on this? Did any numbers show up at all? My dd's WB was supposedly normal, too, based on CDC standards. However, a Lyme expert just informed me that the one band that did show up on it was specific to the Borrelia bacteria (a.k.a. Lyme), so indicated that she had indeed been exposed. Like PANDAS, most every day docs, don't really know how to diagnose and treat Lyme. There are a lot of other infections as well that can cause these symptoms...Hopefully Dr. K will do some additional testing for those as well. is he the one that ordered the Lyme tests and prescribed the steroids? Kara

Hi, My dd9 (diagnosed PANDAS March 2010, Bartonella March 2011) has been doing really well lately. Her IgeneX Lyme results were negative (only 41 IND). For the most part she is functioning around 95%, with little blips here and there. A month or two ago I was looking at her original Western Blot results from 2010 and noticed that one of the Lyme specific bands had indeed showed up. Of course the results were negative based on CDC standards. I brought this to dr. J's attention and he said it indicates she was exposed to Borrelia. So, in addition to the Bactrim and Zithromax combo she's been on since March, he wants us to give her Tindamax twice a day, two days a week, until she is ready to come off all abx (two months after all symptoms disappear). Hopefully this is the key to getting her that last 5%. In the meantime, I also had myself tested through a standard lab for Lyme and Bartonella. Both negative, but the Lyme looked a little suspicious to me. Dr. B agreed to order an IgeneX Lyme test for me. They sent the results to Dr. J. who was kind enough to look at them. He said they look highly suspicious and I should see an adult LLMD (Dr. H. here in MA). Four out of five of the IgG Borrelia specific protein bands we IND, and 41 was ++. So, like others before me, I have mixed feelings about this. I do want to be treated and am hoping it will help with all these various symptoms I've had over the year that everyone (docs, famiily, therapists, friends) says are due to aging, stress, hormones, motherhood, etc. Time will tell. Kara

Great news! Congratulations. It's so wonderful to get to know your child for who they are again.

Susan, you were right. We saw Dr. J over the weekend and he said it is Molloscum Contagiosum. Fot those interested, here is a link: http://www.aad.org/skin-conditions/dermatology-a-to-z/molluscum-contagiosum It's basically a pox virus and apparently quite common and contagious! It will usually go away on its own after 6 months or so (except, of course, in immune compromised people). It is especially common among gymnasts and wrestlers (from the floor excercises). It can also be treated by a dermatologist, treated usually via freezing, like warts. Have you looked up pictures of molluscum? My dd's had this too. Susan

Unfortunately, our guest speaker can no longer make...but we will still be holding the meeting.

Ah...they do have it online....thanks Vicki!