smartyjones

sounds like you are on a good path!! how does he know the other infections are in the past? "treat both issues" -- what do you mean? pandas and lyme? or have you uncovered immune deficiencies? please, keep me posted on the toxoplasma results. and any other infections you uncover, i'd be very interested. thanks!

gatito - do you have more info on why dr. J thought it was adverse instead of herx? my ds was initially put on azith 5 days and it was horrible. he had 100% remission on keflex. now, i'm not sure what it was about. was it herx to lyme? so, i'd be very interested to hear why he thought that of your child. i know you're very busy -- would love to hear that info on herx or if you could direct me to what the paper is. thanks!

LLM - i have really no knowledge or experience with ivig - so i have not really specific comments on that and turning back the pages but have been trying to understand the herx phenomenon -- which i believe is the same. in alternative medicine, it's a "healing crisis" and is used really describe reactions to various types of medicine and procedures/treatments - not limited to specific bacteria or diseases. generally, alternative medicine revs up the immune system to take care of the problem. it's believed that the illness symptoms one experiences are the result of the immune system actions to clear the infection. my son is currently experiencing a healing crisis i believe due to an antiviral we introduced. and boy, is crisis the correct word. i don't know that the symptoms we've seen would be due to his body fighting this virus -- it's been some general ramp up but a new intense contamination OCD we've never seen before. i am curious the role of the BBB in this. i wonder if the antibodies are always circulating in the body and the key to wax and wane without specific strep exposure is the permeability of the BBB -- often due to other things. i found this from a possibly not so reliable source (possibly old study) and didn't even write it down but thought the concept was interesting. "the primary factor controlling the passage of bilirubin across the cerebral capillary is in the plasma, not in the BBB, per se." perhaps the influx of antibodies in the blood from ivig itself creates permeability in the BBB and the exisitng problematic anti-neural antibodies flood the brain creating ramped up symptoms before the good effects of the ivig are registered. why are people using steroids and motrin after ivig? could it be that it reduces inflammation in the BBB? does dr K have an explanation for the turning back the pages? for my son, he is cycling through behaviors fairly rapidly. and strangely, he's always - pre-pandas diagnosis and even presentation - had potty issues. last week, with intense contamination fears on food, he was peeing happily and independently. this not due to other contamination fears, just happily taking care of business. so very odd. are you seeing anything that could be odd resolutions through the intense symptoms?

just to remind of our story -- last june, ds had a completely non-reactive western blot. he was doing okay but stil not healthy. in the fall, he had a quick flu and then relapsed. took a long time to pull out of it. i asked one of his drs if we should re-visit lyme. i really didnt' believe him to have it. i was doing a lot of research. i remember dh saying 'for someone who doesn't think he has lyme, you're pretty focused on it.' that dr. referred us to another dr, experienced with lyme. then, ds seemed to improve. after a terrible school conference, we went to that new dr. in his opinion, based on history - he'd say lyme. i was surprised b/c ds doesn't exhibit "classic" lyme but rather fairly "classic" pandas. not really any tics. this dr is an integrative MD and does a different type of testing. according to his testing, ds has multiple infections. he believes some where along the line, his immune system took a hit and then just couldn't fight off everthing else. not that he is immune comprimised - but that so much was going on, it allowed for other infections to take hold. most lyme drs believe that lyme is so invasive, it creates this situation. so, just my opinion -- but your son really could have everything. i don't think the lyme was creating all these symptoms we were seeing. i think it allowed other infections and we saw on the surface, the problems of those infections. that would explain why were we pretty classic pandas and had 100% remission with first abx. now, some things are common in the general population but don't seem to cause problems. like HHV6, most people will test for it, for a few it is problematic. same with toxoplasma and CMV. so, my son tests for those -- are those what's a problem? no one really knows. we've still treated to rid of the infection. i believe he is currently experiencing a rather intense herx. he started about 48 hours after introducing this anti-viral. he seems to be cycling though symtpoms. first 5 days-ish was ramp up of "normal" behaviors but to an extreme. a few days of back to normal with one eerie calm day in between. then intense ramp up of OCD conatmination with food we've never seen before. that's mellowed but still present, i think getting better each day. yesterday, additional of annoying-like behaviors we haven't seen in a while. i think the only real test will be if all this settles down and he is better than before. for that, only time will tell. faith -- could there have been things in the first few weeks that were ramp-ups but you didn't so much notice them as such until this intenseness? maybe it is herx and its also a cycling but you didn't notice more minor things?

SF mom - did you say you were planning on discussing herx at your upcoming appt? i'd be curious of that dr's thinking -- if is really extreme -- talking really extreme -- is it soldier on through or back off -- reducing/stopping med? or does that only elongate the process?

wow - JAG - how nice. i'm ashamed to say, i usually don't have that patience and understanding. i so appreciate that you do! flexibility and understanding what you see on the surface is not necessarily what's reality, i think. my ds had a really rough last half of the year last year. i think it's b/c for whatever reason, his teacher just became frustrated that he wasn't falling in line with all the others and although, she knew of his medical issues, began seeing his behavior as annoying and defiant. i believe she withdrew rather than discussing it with me. it would have been helpful for me to know more of what was happening and perhaps, for her to gain other perspective also - so I say, don't be afraid to discuss things with the parents. also -- last year, at my older non-pandas son's baseball practice, the coach was teaching something about the pattern of the play. i didn't even know there are actual plays in baseball where you call a sequence. the coach was teaching it from pitcher's mound with all the kids in the field. ds looked literally off in left field as coach was talking. when it was his turn to play it out, my dad and i were laughing that he'd surely have absolutely no clue what to do. he got up there and worked the sequence better than most other kids. my dad and i over fell over. although it fully appeared he was not paying attention -- which is often for him -- he was absorbing it all. it just didn't appear that way. good luck.

for those who know OCD and recovery -- if you have a contamination fear of food and begin with excessive washing hands to clean off all germs, but the root of it is contamination fear, with intense avoidance of touching food -- then move into still having the fear but drop the excessive hand washing -- still finding other ways to avoid touching food --- does that show a step in the right direction of shedding the issue? how do you determine when you're moving in the right direction vs. just replacing one dsyfunctional behavior with another?

gatito - please do post what info you find from Dr. J. my son had clear strep issues when he presented with pandas behaviors. he had 100% remission with abx but backslide when off for 30 days. his western blot was completely non-reactive. after 6 months or so, i didn't feel he was on a good healing path -- just seemingly had a collection of good and bad days. i asked one of his drs if we should revisit lyme. he referred us to an integrative MD who uses something called auricular medicine -- it 's a type of acupuncture and he does a type of muscle testing with that. he first said based on symptoms, he'd think my son had lyme. when he tested him, he confirmed lyme and also found CMV and toxoplasma gondii -- which recently has been implicated in mental illnesses. what lab did you do those tests with? did your ped order them? he is being treated for both those infections with homeopathy. i would have loved to have traditional medicine tests for those also, but it wasn't worth the hassle and money to then treat him the in the same manner i would have without them. still, would have been interesting. i'd be so interested in what you hear from Dr. J. thanks.

does anyone have any info or thoughts on a herx reaction having any relationship to opening the BBB? it seems to me, that the docs are heading in the direction that the BBB is a key factor. as kara posted earlier, Dr. Leckman suggested general stress could cause opening. i am having trouble understanding the reaction in general -- it's a flood of toxins produced by the dying bacteria, right? i recently heard a LLMD say that the spirochete is the only known bacteria to produce a herx reaction. i was curious about that and someone pointed out to me the use of the word known. pre-pandas, i had only heard it used in relation to yeast treatment and being toxins produced when the yeast die. i'd only heard of it as a flu like situation. my son seems to be having a herx due to an addition of a viral med with exacerbation of usual behaviors last week, which went away, and some OCD stuff we've never seen before. do viruses also produce toxins when they die? could the herx reaction affect the BBB and we see symptoms of existing antibodies crossing it and causing symptoms? i'd appreciate any thoughts!!! thanks.

i can't really even express how impressed i am with what you've accomplished here! fabulous! i wish you such a fantastic trip!

please do - i'd be so very interested to hear what you find out at that appt! thanks.

i believe that mycoplasma is a co-infection that ticks can carry -along with the borrelia bacteria- someone else can verify if that is true or not there are other bacteria and parasites that ticks carry in addition to the actual "Lyme" bacteria that can cause health problems and often when a person is not getting healthier despite treatment, it may be due to the co-infection.

arial - of course, all kids are different and presentations are different. my son's presentation has been predominantly behavioral - when i think about it, i am stunned and thankful that we were 'lucky' and didn't end up treating him as ODD with other variations for years. i've highlighted in your post thngs that are some of his major behavioral issues due to pandas. he didn't talk in specifics, but did talk often about death and dying. i fully understand what the dr is saying about vulnerable child syndrome -- i diagnose so many kids in my mind. however, IMO, she's presenting strong pandas behaviors and you're being aware. good luck.

so how/where do you draw the line between herxing reaction and a true disintegration? how do you know when to step in with another intervention?

i believe, but do not know so could be wrong, that many lyme drs will treat for 3 months after the cessation of symptoms before beginning to wean.

i'm going to post here my understanding of what Dr. Latimer said at the conference concerning urinary frequency. that's the term she used and talked about daytime but i believe it would be true for bedwetting also. i found this interesting b/c i've never before seen the explanation for it, just the listing as a symptom. you have an internal and external sphincter for the bladder. the internal is unconscous and just 'works' as a body function. urine flows in, you don't feel it b/c the internal sphincter stays shut. once the bladder is full, you have the feeling of having to go due to pressure on the external sphincter. kids with pandas lose control of the internal sphincter. i don't think she pulled that back to why -- b/c that is an area of the brain controlled by the basal ganglia -- ?. so they only have pressure on their external sphincter, just like the rest of us when we have to go, whenever urine flows into the bladder. which is basically all day long at any time, yes? if a kid only has bedwetting, are they better able to control that external sphincter during the day? maybe they also feel they have to go all day long, but just think that's a normal feeling and deal with it? then at night, just can't have the same control? i guess it never hurts to be thorough and check out other possible causes but if your son has other pandas symptoms . . . i think it would be very interesting to talk to your mil to see if your dh has other pandas symtpoms.

fuel for all -- what;s your inside track on this meeting? you seem to have a lof of info. . .

WOW - and this was from p.mom seeing the ad and thinking maybe, just maybe. . . ? so very impressive!!

i wanted to throw in some thoughts as my son had clear evidence of strep - - ASO of 898 and positive throat culture at time of onset, CT scan showing all sinus cavities infected(not cultured but dr assumed strep) -- and later diagnosis of Lyme -- i think with some kids the issue then become infectious agents causing the trouble, not that they have pandas, specifically from strep. most Lyme drs believe Lyme is so invasive and detrimental to the system, it leaves it open to "invite" other infections, be them parasitic, bacterial or viral. there are also the co-infections that can be transmitted by the tick concurrently with the Lyme. ds had a known strep infection at 22 months, 2.5 years prior to onset. i'd never seen a tick on him previous to onset and after - picked one off him that was moving. we live in an epidemic state. did he have Lyme that engaged an improper reaction to strep? did he have colonized strep that exploded when Lyme hit him? does he have a genetic predisposition to pandas reaction and coincidentally got Lyme? did i pass something to him while pregnant? sometimes, my head spins with the chicken or the egg (although, i know it doesn't really matter) and how could he possibly have so much crap going on in his body. . his dr believes there's not a way to know -- just that somewhere along the line, his immune system took a hit from something and left the door open for everything else -- for him, toxoplasma gondii and cytomeglalovirus along with low level lead and radon issues also. i did get the sense at the OCDF conference, that the experts are aware of these multiple issues that can cause trouble. they seemed committed to discovering what is going on and what to do. keeping the BBB closed seems key -- i wonder if that is the difference between those that have troubles and those that don't with common viruses/bacteria. (like herpes, a large % of the population has toxoplasma or cytomeglalovirus but is not adversely affected)(however, i wonder if they are, they just don't know it's that or it's very low level) or, is he not really affected by these either, it's still the strep or lyme? ds had such clear evidence of strep, i really didn't think he had lyme.. but a friend whose kids and she had lyme wouldn't let it drop with me. when ds didn't seem to be really on a healing path, i suggested we revisit Lyme and dr referred us to a dr schooled in Lyme. way back at initial diagnosis of strep by useless ped (pandas by behavioral therapist), ds was first put on a 5 day course of azith which was horrendous. then switched to keflex and nystatin and had 100% remission in about 3 days. here's what i now think -- only out of my head, no science really to back anything up. i think he had Lyme and strep, possibly smouldering for who knows how long. not sure he ever fully kicked the strep at 22 months. something then pushed it further and we saw typical pandas symtpoms. or was it that he had smouldering strep and the lyme pushed the symptoms. i can make room for the possiblity that the azith was a herx. i think he had theses other infections but the behaviors we initally saw were a result of the strep. the keflex took care of the strep and thus, remission. however, the other infections were still there/ not fully eradicated and he couldn't recover fully. i realize i'm babbling -- what i'm trying to get at was, i don't think he had Lyme masquerading as pandas. i think he had Lyme and pandas and cytomeglovirus and toxoplasma. my hope is in the future, a kid presents with symptoms and there is a protocol to discover what infection (s) are going on. there seems to be movement in that direction but it's still a long way off. then of course. . . what to do about it? for us, we're working on clearing the infections. maybe not eradicating but moving to a level that is not detrimental for his body. if we were seeking consultation elsewhere, the advice may differ. so i think you have to take in the advice you're given and decide for your child what you think is best. as frustrating as it is to get differing opinions, i think at this stage of knowledge with this condition, it's best to seek all the knowledge and then make the decision that you feel fits your situation.

yes -- it is. usually if you know of the tick bite -- it's 2 -4 weeks. i'm not sure about the protocol for long-term Lyme. i am not sure. . . but would check out. . . i believe it's not usually prescribed for kids b/c of some issue with bone growth. perhaps with a teenager, it's different. again, not meant to scare you, could be incorrect but something to check out. and of course, with all meds -- there are long-term issues that may not be problematic with shorter term use. watch the sun when on it -- can make you extremely sun sensitive!

pacificmama - i'm curious, do you have any further thoughts of your's or Dr. Jones about the lyme/strep relationship to share ? thanks

i thought i posted earlier today but looks like it got lost . . . hopefully didn't end up on some other thread...at any rate. . . . SFmom -- did your children or those you are speaking of have Lyme symptoms that are not crossover pandas symptoms? i know you know quite a bit about strep. i guess it doesn't really matter b/c the issue is to treat all the infections, i just think about for future thougths for others -- my ds had clear strep indicators and pretty classic pandas symptoms. only due to a friend who has Lyme, did I first have him tested with a western blot, which was completely non-reactive. 6 months or so later, i thought he should be doing better than he was and asked a dr if we should revisit Lyme. he referred us to someone else who diagnosed Lyme and a few other infections, not tick-borne. just curious if you have thoughts to share about the Lyme/strep connection. re: herx. previously, i had always heard of herxing relative to yeast. recently, at a lyme dr talk, the dr stated that the spirochete bacteria (or it's actually a bacterium - ?)(pls excuse if i don't have the science correct) is the only known one that wil produce a herx. i believe pacificmama posted something of the same. has anyone heard of anti-viral meds inducing such a reaction?

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here's what i have written in my notes from dr. K at the OCF conference -- abx eventually all fail. he has given abx within 3 weeks of onset that are now asymptomatic. so, no, i don't think he's referring to worried dad. and i don't think he's referring to ONE case. it sounded to me that he has had that experience of immediate treatment more than once. as for symptoms that go unnoticed . . . previous to sudden onset for us, i referred to my son as having "a defiant streak" and "being more tantrum-prone than your average child". even with that, he was still an easy-going fun child. all seemed within the realm of normal, 2, 3, 4 year old behavior. certainly nothing we couldn't handle or would seek help for. in retrospect, i now think this has got to be related. he had confirmed strep at 22 months and sudden onset at 4.5. he had potty training issues at 3 -- we took him to ped who thought his throat looked like strep - rapid and culture were negative. how long is this brewing for some/all kids?

exactly! i did not like the way that e-mail seemed to mock that conference. i did not get the impression it was a session to convince the nay-sayers. i felt it was an sincere effort to share information. concerning that conference, i heard mentioned 'lyme, mycoplasma, varicella and other viruses'. i think this is huge since my son has since been diagnosed with lyme and other infections. i didn't feel what may come of it would simply be that pandas is real -- i felt it would/could be much more. i think my son was incompletely diagnosed with pandas - he had classic symptoms, medical evidence. however, later he was diagnosed with lyme so i think pitand more accurately fits. what presented was pandas with much more under the surface. i was encouraged to think the experts are aware of these situations and that would be discussed in this meeting. i guess we'll have to see but i was encouraged at the conference with the doctors and so appreciate having the opportunity to hear from them in person. THANK YOU to those who made that possible!! yes, there is not a uniform protocol of what to do but that there is movement in the right direction. it's it unfortunate that we are the ones at the forefront but with that there's also opportunity to affect changes.