Priscilla

we were also given a specific probiotic which required a Dr code to purchase. Hmmmmmm

unfortunately, I think that may be the case with the ivig also.

lyme is very good at morphing, evading, as well as invading the immune system. It is known to cause autoimmune issues. My dd had elevated titers with no recent confirmed strep. In retrospect, she could have had it passed in utero, or from a bite at 3 yrs old. My thought on the connection is that lyme wreaks such havoc on the immune system that it can actually trick it into thinking there is strep even when there isn't. Lyme can change its surface proteins and may very closely resemble strep. Therefore, someone with a previous strep exposure will have the strep antibodies (from their memory cells) and can produce antibodies in excess to find a strep that isn't really there. If it is neuro lyme (lyme can be in brain tissue) those strep antibodies could be attacking that area causing the inflammation known to PANDAS. Of course there is no way to know for sure, but this is what I feel could be happening with us. We have seen so much improvement treating Lyme rather than PANDAS (even though it is just a combo of abx) the lyme diagnosis is what is leading to healing for us. I agree the connection needs to be researched swiftly- our chilren are needlessly suffering.

Thank you for this post. Would be nice if it was a little closer:) good idea though and will hopefully catch on.

oh yes, my dd was 8 and trying to jump from moving car, window, pulling out knives in kitchen and even tried to jump head first off the kitchen counter

seems to me it may be the same dr pathfinder, he also recommended it to us but we didnt do it. By the way we are doing great, how about you?

OK 3rd time I am trying to reply, keeps erasing>> uggh. We tried it for several months, very stressful, expensive, and no effect on issues. Made her feel even more different. We thought PANDAS for almost a year and treated, then found LYME +, treating for lyme has been VERY SUCCESSFUL. Went back to our normal healthy eating habits. I don't recommend it from our experience but I know others feel it helps. This is just our experience.

funny you mention this because I had burning in my fingers which progressed to my hands and forearms just about a week ago. It only lasted for about 2 days but it was very concerning. I was bitten by a tick last september but haven't had any testing so not sure if it was related. When it was happening I was looking for a cause and came across low calcium as a cause. I just took a calcium supplement for 2 days and it has stopped. May just be coincidence>>> not sure what to make of it.

interesting. My little dog too has OCD with licking.... he will lick the pillow, couch, bed..... incessantly, very obvious OCD like behaviour. I have actually wondered how many families on here have pets with OCD. I also had my older dog die in 2008 which had severe joint pain, occasional seizures, and progressive aggression into his last year. I worked as a Registered Veterinary Techician for over 10 years and saw ALOT of unexplained neurological deterioration in dogs. My daughter has been diagnosed with Lyme disease, and has improved dramatically with treatment. Dogs are known to contract and carry lyme disease, probably more acceptable of a diagnosis in dogs than in humans. While this was started to humor us, I think it is VERY significant!!!! and it would be interesting to know how many other of these children are exposed to pets that also show these behaviors.

my dd had more of a "lingering touch" if you touched her, she could feel it and would demand us to take it off (since about 3 yrs old) especially on her head. I considered this a "hypersensivity" reaction- because she could truly "feel" it. I am curious about the ear drops though. I have tasted eye drops myself- could the sinus area have a "breach" that is causing the fluid to cause her that sensation? Well we have been fighting these issues for several years and very severe since april 2010. We got a lyme diagnosis (which hypersensitivty is a symptom of, along with almost every other:( we are finally seeing dramatic results since starting lyme treatment, pretty much 110% over last 6 weeks

for us there was ALOT of morphing of the OCD. Sometimes week to week, sometimes day to day. even with a consistent abx. I think it is important to know that this is a VERY slow process. For us, changing things too quickly seemed to set us back and make it to hard to see what was going on. It was once I stopped changing things, and eliminated many variables that I was able to see what was really going on. It took several weeks to months to start seeing improvement with a consistent regimen. Noticed that the slipping was probably coming in cycles even though we were being consistent. Our best progress has come since december 2010 with a consistent dose of Augmentin XR and and addition of zith in Feb 2011. I have remained very consistent on these meds with some ups and downs. Just a few months ago I was able to see there was a flare pattern (before I was just frantic she was slipping and would think we weren't getting progress) I am going to dare to say it (hopefully without jinxing myself), she has been 110% consistently for about the last 4-6 weeks- NOTHING!!!!! from SEVERE OCD to absolutely normal! In January I was registering her for an intensive treatment program, now not only is she better, SHE IS AMAZING! She is such a pleasant child. I feel like the abx need patience and time, even with the right combo. At least a couple months.

Looking at our last labs the result seems to repeat itself- the most recent is 40 listed under: CD 57+ CD 57+/CD 3+ CD 57+/ CD 3+/ CD 8+ CD 57+/ CD 3+/ CD 8+ The 40 is listed under each of these. We use the Quest in San Juan Capistrano which I think is the first Quest to perform the CD 57 specific for Lyme- I had thought it was the only Quest to do it, but who knows. I have even heard it is not reliable for children. I have just decided to measure it to see if it corellates with her progress which so far it has. Hope that helps:)

I am no expert here but our llmd only uses quest or igenex for the cd 57. we had a pos igenex and a cd 57 from quest at 28! After my results I started looking more into the cd 57 and saw alot of recommendations for labcorp but there was 2 problems with that. My dr doesn't use them, and I had already recieved a result consistent with lyme from quest. I decided to stick with quest. We repeated the cd 57 with quest about 6 weeks ago and the increase to 40 strongly correllates with my dd's improvement! I think it is wise to stick with the same lab whichever you choose to measure your progress, so difference in lab procedure doesn't become another variable. It makes it easier to see if clinical progress is reflected in the lab values.

While B cells accumulated in large numbers and made some specific antibodies against B. burgdorferi, they did not form “germinal centers,” structures that are needed for the generation of highly functional and long-lived antibody responses. Interesting- hence the reason for false neg on WB I keep thinking the confusion lyme causes in the immune system is why we get elevated strep titers without evidence of strep (our case) I really feel lyme causes PANDAS, along with all the other autoimmune diseases it triggers.....Hope we figure it out soon

I just want to say we were at the point of fed up. i went off abx 4 x! EVERY time my dd got worse, some times within the week, and another time she slowly deteriorated over 2 mos. We were on all the supplements and clay for several months. I personally felt it was too many variables, when I took her of the abx for 2 mos, I took her off EVERYTHING! That was when she lasted the longest. We have now been on abx for over a year- actually we are now on 2. I struggled with keeping her on long term abx for several months... she was so tormented by her own mind (suicidal at 8 yrs old!) then I gave in and accepted it... her mind or her gut... rather have her mind. Since Dec she has only been on abx, I don't give her anything else, just a healthy diet and she is doing great. I feel so much less stressed without all the other variables.... Is the clay absorbing abx before working? is one thing counteracting another? Is her system so overwhelmed trying to sort all this foreign stuff I am putting in her it is taking away from healing???? It also allows me to see her behavior pattern and I have just now figured out after 13 mos of abx she has a pretty consistent flare around every 4 weeks, it seems to be less extreme and pass quicker though. Several months ago I was so caught up in too many treatments and variables I couldn't recognize the pattern. I just thought I would share. i feel like the abx were the only absolutely necessary thing. In the last month or so I can say we are 110% between the flares. You may have to accept a longer course of abx. I must also mention that we did 4 hd ivig which did give us some results, so without that we may be looking at an even longer course of abx.

I know where you are, I have been there. I actually strayed from the forum for a while but I check in periodically. I was in a very bad place last year and when you start to get better, I guess you just really want to move on and get back on track. I check in for this reason though, I have been where so many other moms are just coming into. I have a 9 yr old dd. She had some on and off mild issues from a very young age. Now, in retrospect she was sick for a long time. Just after her 8th birthday she went crazy pretty quickly: very defiant, aggressive, fidgety, ticcing, OCD.. then within 1 week she started panic attacks, severe phobias, full body jerking.. came across PANDAS and KNEW that was it. Started treatment with antibiotics and saw some dramatic improvements but I was to anxious to get off the abx. and whenever we stopped, she slipped. We did 4 high dose IVIG over 4 mos last summer. MAJOR herxing after the first. I would say we saw a definite improvement in baseline personality with IVIG but still alot of tics and OCD. I was so skeptical of lyme but I saw that ALOT of PANDAS kids were getting that diagnosis. I didn't act on it, but kept the lyme card in my back pocket for a resource if we didn't get better. I couldn't bring myself to buy into it. Something kept nagging at me about it, then one day I found a tick on myself in the shower! I wasn't ANYWHERE near a wooded area, I considered it Divine Intervention and decided I would educate myself as much as possible before the possibility of testing. The more I learned, the more curious I got. I went ahead with the test and didn't even know what answer I wanted to hear.... It didn't seem any better of a diagnosis than PANDAS and I was at the end of my rope. Well, we got an Igenex positive for CHRONIC infection. I of course had this done at a LLMD, which by the way was the FIRST doctor through all of this that I felt I could sit back, and put my trust in him. I am a nurse, I am VERY skeptical of doctors, and I often (mostly) find myself telling THEM what we need to do. This was the first doctor who took an initiative and made me feel secure- and he WANTED to help us (thats a novel idea for a doctor nowadays huh?) Anyway, we are doing GREAT!!! Mild flares every 4 wks or so, but I haven't seen my dd TRUE personality in many many years. It was only a matter of starting another antibiotic in conjunction with the other one. I DO feel IVIG gave us significant improvement, but that makes sense even with the lyme. I did get caught up in the worst of it doing 7 pills a day (supplements, meds,anti-yeast, detox), crazy restrictive diets, researching so many herbal therapies, cranial sacral therapy.... basically grasping at straws. In my personal opinion, it was ALL fruitless. I got fed up, stopped everything, even abx, but that only lasted 2 months.. I know now they were the ONLY thing we actually needed out of all we were doing. NOTHING else made a difference. I stopped stressing her and myself out with the crazy diets, she just eats healthy (she always has), NOT RESTRICTED. I kept her involved in activities as much as possible, IT SO IMPORTANT to not take away the things that make them feel like a NORMAL kid. If we had to leave, we left, but at least we tried. Most importantly for us, we kept FAITH, Faith that there was a plan in this suffering, and there was. My daughter is AMAZING! STRONG, WISE, SELF AWARE.... She knows she doesn't want to rush to grow up because her childhood is precious, she feels she lost some but now is enjoying it to the fullest. I prayed so hard for guidance, and I got it.. I wish you all the best- ALL OF YOU!! Feel free to contact me if ever you need

Hello Priscilla Good article. I thought I heard someone saying that there is also correlation between full moon and lyme. I personally think altitude has something to do with lyme as well. ( at least the kind my ds has) I always noticed my ds's pandas/bartonella symptom flared up when we were at certain altitude ( ski or fishing trip to big bear or mammoth lake often and every time when we were coming down from mountain, he would have a complete break down---I would spare you the details) My son and I went to New York a couple of weeks ago and whenever we were landing, he once again had total melt down. ( this time he was weeping and shaking his head--totally miserable) This has happen too many times for me to ignore as coincidence. I really think there is something with altitude and my son's problem. I am going to have my ds ( poor guy) do hyperbaric chamber therapy at Irvine this summer for the same reason. If I throw enough stones at it, at least one will hit it, right? Over all my ds is doing fantastic, how about your dd? funny you say that, last time we came down from a snowboard trip it was HORRIBLE!!! The entire drive!! Overall, she is doing FANTASTIC!! mild flares every 4 weeks or so, then she seems to get right back on track. She is in sports, swimming, and socially blossomed:) She is so happy and cooperative MOST of the time, and so WISE from all her struggles. I look back at how hard it was to just get up in the morning and I feel so GRATEFUL for where we are. Praise God!!!

your 9 year old sounds ALOT like my 9 yr old dd. Had random tics for several years, alot of tummy aches, not so much the headaches but occasional chest pain. She went south fast last year and we treated for PANDAS for several months, then I gave into the possibility of LYME. If you are in VA I would DEFINITELY educate yourself as much as possible and test/treat. We live in So Cal but I grew up in Md so I thought possible I passed it, although now I know it is prevelant in Ca too. Anyway, we have seen the best results since treating for lyme. She had an Igenex positive for chronic infection, wouldn't have met CDC criteria though. She is better/happier than she has been since at least 3 YEARS old! maybe longer. She still has flares about every 4 weeks but they pass quicker and quicker and she is about completely normal in between. I vowed I would promote lyme awareness if this was the right path.... I am so happy we went down this road, FOLLOW YOUR GUT!! EVEN WHEN ITS NOT SPEAKING TOO CLEARLY! If its nagging at you, pursue it. I toyed around with Lyme for several months, then I found a tick on me and took it as a sign. So glad I did.

http://www.lymenet.de/symptoms/cycles/evalsum.htm I posted this yesterday as I was thinking about my dd flares. She is pretty consistent at every 4 weeks. I found the analogies very interesting, and it solidifies my belief in the link between PANDAS and Lyme..... INFLAMMATION as the niches leak (sound familiar from PANDAS) I have been so topsy turvy over this last year trying to get her well, but now that we have stablilized treatment over the last several months it allows me to notice the pattern without all the other variables. The flares certainly come about every four weeks, but are less severe. My point is, I now see the herx as the inflammatory process rather than a random toxin dump. HMMMMMM

Came across this while look for reason my dd has a pattern of flares with Lyme. Struck me when thinking about how PANDAS has been known to subside at onset of menses. I little technical, but I get the idea there is a strong link. Any thoughts? http://www.lymenet.de/symptoms/cycles/evalsum.htm

Just wondering, my Lyme diagnosed dd often says she just gets itchy all over whenever we get a heat wave. When she wasn't doing well I noticed it would really exacerbate her anxiety and symptoms. Thankfully she is thinking so much clearer and she can verbalize how the heat irritates her. I am just wondering if anyone elso has heard of this with lyme or other TBI?

oh just to add, we did 4 HD IVIG when treating for PANDAS.. we saw improvement in baseline but still alot of OCD and tics. I think the IVIG helped fight the lyme also, then then the tweeking of abx, along with time has started to pull it all together for her- and lets not forget FAITH!!

just want to add a quick YES, nothing is 100% certain, but I know my dd started getting better once we got a lyme diagnosis and started with a LLMD. I think she is still fighting some OCD, but that's just it, SHE'S FIGHTING IT! She has done a complete turn around from just last summer, and in some ways she is 150% better than she she's been since, well maybe since birth! Could be a congenital issue here too but can't say for sure because I haven't been tested yet. But the answer is YES-I was so skeptical of LYME, but I have to admit, the proof is in the pudding, she is getting better:)

sorry to hear this, as if this isn't hard enough. I don't know if you first had a PANDAS diagnosis you may be able to ask for some advice from Beth Maloney. I am not sure where she stands on the lyme issue but she was an attorney ad litem so she may have some insight in the fight for you. Maybe if she could just use her profile to help you convince those necessary that this is a MEDICAL problem. I don't know, I will pray for you.

we did IVIG- I feel they helped improve our baseline- happier child. I visit now and again, but a recent Lyme diagnosis and starting of treatment (which so far is conservative, just an addition of abx) has improved us so far to a pretty happy functional level. Just a few quirks left to work out with the OCD but doing well so far. Just gets overwhelming to think about going back to that place so sometimes I stay away. I do want to be able to come back soon "certain" that the lyme treatment is our cure, share our whole story, and help as many as possible. I was a huge lyme skeptic, but we are doing well, and I guess time will tell if the proof is in the pudding.