Bill

Others have provided good answers to your original question. I'll offer up my way of charting my son's symptoms (below). Formatting won't look right after I post it but essentially I use it as a guide to rate his OCD, behavior, and anxiety on a daily basis. The scale is appropriate for my son, yours will likely vary and you may not even use these three categories. The real benefit for me is that it was real easy to talk about documenting my child's symptoms but for me, really hard to carry out on a regular basis. It is very easy for me to plot a number down at the end of the day. You may want to create a chart that captures scores by morning, afternoon, evening - or by the hour if you are really energetic. I use excel and create graphs against time noting dates when medications are changed. Documenting your child's symptoms, especially as their medicines change can be very beneficial to you and your doctor(s). Hope this helps. bill OCD Shut Down 9 8 Others Contaminated 7 6 Functional but Persistent 5 4 Functional with Triggers 3 2 Not noticeable 1 Behavior Raging/Must be Restrained 9 8 In Face/Won't Yield 7 6 Angry/Defiant but Yields 5 4 Pain in the Butt 3 2 Happy 1 Anxiety Cocooning all Day 9 8 Some Cacooning/Constant Fingers 7 6 Picking Fingers Often 5 4 Some Finger Picking 3 2 None 1

http://medicalxpress.com/news/2011-06-lyme-disease-bacteria-lymph-nodes.html http://medicalxpress.com/news/2011-06-lyme-disease-fare.html

I think the ordeal is a big reason. TPOTTER's son is 15 which probably helps. My son is 13 and could probably handle it now but not so sure when his OCD was a little worse and he was not as mature. Add in smaller veins, risk of infection... I think the above was the response I got from my doctor when I asked.

My son is scheduled for IVIG with Dr. B. end of June. My local doctor noted that she had one patient who was also on minocycline and had an issue with IVIG - I think she said intracranial pressure. I did not take notes so wouldn't swear that's what she said and do not remember the reason but.... Anyone else on minocycline and had issues with IVIG that was attributed to the mino? I'm waiting for proper wording from my doctor and will be sending this question off to Dr. B.'s office but always appreciate the experiences here. TIA, bill

"i don't know much about this website - it was posted as a good source on the pandas forum, then the poster recanted" That was me I believe. Lots of good articles but I also ran across quite a few that seemed to be a little too self serving. It is not a peer reviewed publication by medical standards so my recant is reader beware, grain of salt, eyes open...Otherwise, some good articles turn up every now and then. bill

Just wanted to share that we are in a similar situation. Being treated for Lyme since October. Son has never really herxed. His ASO/Dnase are 246/206 as of April this year; still high but a lot lower than they've been. Lots of small improvements and several major but OCD and dystonia remain significant symptoms. We were approved for IVIG with Dr. B. and are scheduled for the end of June. We have been struggling with the decision to proceed or not. Right now - and after consulting with our primary doctor - we are proceeding with the IVIG. Dr. B. told me last October that he did not think my son would see relief from the OCD until IVIG. He is a PANDAS doctor though and clearly attributed the OCD to the strep. Our LLMD attributes OCD and raging to the bartonella. So - we've held off until now. I probably won't remember but if I do - or if you remember to ping me, I'll relay our experience afterwards. He is scheduled for 27/28th June. At this time, my wife will be there with him. bill

I seem to recall that high ASO and DNASE numbers follow an infection - the numbers rise in the weeks after the fact and then can take months to return to normal. I do not believe that the numbers reflect current but are better used for trending purposes. I may be wrong on that though. Anyone else?

http://medicalxpress.com/news/2011-05-antibodies-drugs-blood-brain-barrier.html Research so no help any time soon. bill

My geranium oil of essence in almond oil (10-20 drops per tablespoon) seems to repel ticks very well. Neighbors have been telling me they have great success with powdered lyme in their yards.

Yep - that was my thought as well - too late for many here but perhaps the next generation will not have to endure this. I got pretty excited by this article from June 2010 "New Test May Simply and Rapidly Detect Lyme Disease" (http://www.sciencedaily.com/releases/2010/06/100618141631.htm) but have not seen anything yet. Sigh. I'll post the link above to the PANDAS board. bill

Since you are working with Drs. B & J in CT - you can't do much better. Others are right though in that Dr. J. may not be as "close" as you need in the shorter term. The optimal solution would be to find a doctor who consults with Dr. J. as needed. As Dr. J. has probably seen more cases than anyone else, he can give you the confidence you need. Specifically, he was able to share that he has seen several other children like my son (predominant symptoms of raging, dystonia, now OCD). Just knowing that he'd seen similar before takes a weight off one's shoulders. My son does not herx so I can not be any help to you there. Dr. B. and J. have some sort of relationship; I would feel confident that they will consult as needed. It is likely that Dr. J. has seen others who react severely to medicine. Hopefully, he has treatments to match. bill

My short response: No. It can be both. My long response: Good question and probably no definitive answer. Bartonella is also known as Cat Scratch Fever. I remember that when my wife was pregnant, they wanted her to stay away from kitty litter duty as (apparently) bartonella can be transmitted via cat fecal matter. There are tens(?) of different bartonella strains as well. So - while your child could have picked it up from a tick, they could have picked it up elsewhere. Wikipedia states: "Bartonella are transmitted by insect vectors such as fleas, sand flies and mosquitoes." In my humble opinion, it will do no good trying to figure out how your child picked it up is my real point. It is good that you know and can begin appropriate treatment. Our son's CaM Kinase II score was 126. That is on the low end for PANDAS. We started on the Pandas path and have ended up on the Lyme + co-infections path so I e-mailed Dr. Cunningham making sure she could include this in her studies. Her reply (in part): "His CaM score is so low that I suspect that the disease manifestations were primarily due to the infection alone and not as much to autoimmune responses, but we will also look at his anti-neuronal antibody titers to our 4 antigens." I do not have the background to fully understand the significance of her statement. Also, your child's score is well into PANDAS land as I recall so clearly different from my son. Our LLMD noted that she equates raging (particularly raging) and OCD with bartonella. Here is where my beliefs are taking me today....First, I do not know how one separates PANDAS symptoms from Lyme from co-infections. From everything I know and remember, there is a lot of overlap. I am falling more in the MCIDS - Multiple Chronic Infectious Disease Syndrome camp. If the strep bacteria is the only culprit then I guess one only has PANDAS. But for most of us, we are finding multiple infections. Many have immune system issues to one degree or another. Theory behind MCIDS is that each bacterial or I suppose viral infection weakens the immune system just a little bit more. There are differences in symptom displayed which I would attribute to genetics, age of infection(s), sequence of events, and moon phase We will probably never know. Since you have a positive for bartonella, I would recommend working with a lyme literate doctor. I have seen no indication that the leading PANDAS doctors really know how to handle lyme and co-infections. As far as I know, the treatments for lyme/bartonella might take care of strep along the way. I do not mean to imply that PANDAS treatments are not necessary. Each case is unique. I'm just a parent trying to find answers so please do not accept my word on that. Find a good LLMD!! Having followed some of your post, I know that you have had a tough time - but you are hanging in there! Well - time to appreciate yourself and your tenacity, you've started finding real answers. As others have told me, this still won't be a quick fix (so hang on) but you have some real direction to proceed now. I am thinking about writing my own book on our travels so I can print a dozen or so copies and give them as Christmas presents to all the doctors who did not believe us! Should I save a chapter (or ten) for your story? Good luck! bill

http://medicalxpress.com/news/2011-05-antibodies-drugs-blood-brain-barrier.html

Different experience for us. SSRIs worked miracles for our son from the beginning. Zoloft at 25mg/day worked for some three years before it just stopped working no matter what the dose. Then took 4 months to find that Prozac works and has for last 22 months (90lbs, 30mg/day). Can't wait for the day we can stop them but probably can't yet. Tried lowering the dose around Christmas to 20mg/day; as noted, we are back up to 30mg/day. bill

I asked our doctor specifically about Dr. Chugani's research. She repeated what I saw elsewhere in literature. While this research is promising it is limited by knowledge of the baseline especially for children. That is, it is difficult to determine inflammation since it's difficult to know the baseline size unless the inflammation is extreme. This was about 18 months ago or so. I have not kept up to date on the research so perhaps it is more mature now. My son has had two MRIs. The first some 5 years ago and it was normal. The second last summer; it showed 3 small lesions consistent with chronic lyme, MS, parkinsons, etc. In the end, I think the latest MRI is just one more piece of information being used to support chronic lyme diagnosis but the results did not change treatment options. In fact, I don't think it gave our neurologist insight one way or another. Just evidence. If we ever get through this (when we get through this), I'll push for another MRI just to see what happens with those lesions. Just another thought, my son's first symptoms were likely some 10 years ago. Whatever is going on, it took some years for anything to show up on an MRI and that's making a huge assumption that the MRI results are even related. bill

Like everyone else here, I've been tracking which symptoms improve, which get worse each time we change anything. I've been correlating most closely to changes in ABX. As I lay awake 3am this morning (and who doesn't), it occurred to me that my son's reduction in tics might be due to the Magnesium (84mg Mag-Tab SR X1 daily) we started him on April 15th. I added this after reading Burrascano's "Advanced Topics in Lyme Disease" October 2008. Per his paper: "Magnesium supplementation is very helpful for the tremors, twitches, cramps, muscle soreness, heart skips, and weaknesses. It may also help in energy level and cognition." One of the side effects can be diarrhea but my son has not experienced that. bill

Holy crap!!!! I did not get through everyone else's posts but I can tell you that as of 2 years ago he was the anti-Christ of PANDAS. Furthermore, and I won't go through my son's story here but he is one of the experts who had the audacity to tell us that my son's emotional and physical changes were unrelated and essentially refused to look further. He treated my son for dystonia and told us to seek out a psychiatrist for the emotional. I read his research on Tourettes and can tell you that his research was pure crap. How his research made it through peer review is beyond me but probably speaks volumes about politics in the medical community. Deep breath. Sorry but we went to a leading pediatric neurological expert only to end up losing two years. Another deep breath. So perhaps something has happened to change his mind but it would have to be huge for me to change my opinion of him as a doctor - period. Hopefully I've not violated policies of this forum. bill

My son has issues with the TV - he can't stand for it to be off! bill

I am so glad to hear that your dystonia seemed to improve! My son has whole body generalized dystonia. We are on a different protocol now but his dystonia was improving with augmentin/azithromycin combination. It is getting worse again now that we dropped the augmentin. It seems to me that the augmentin/azithromycin combination works. Either one by itself or with other drugs does not. I need to explore this to try to understand why. Anyway, you are the only other one here with Dystonia that I know of other than my son and it is kind of comforting to know that he is not alone. Hearing you say that you also improved helps confirm for me that the dystonia is related to all of this and now I know that both of you will beat this! bill

You are not alone. My son has never "herxed" by the classical definition. Sounds same as what you are experiencing. My son did test positive for Bartonella and doc. associates raging and OCD with Bartonella. His OCD continued to get worse from December right until - recently. Not sure if he's really getting better or the threats of sending him off to Wisconsin this summer (Rogers Institute) have finally caught his attention. Everything is so low and slow we can not tell the difference between changes and well, just changes. bill

Before everyone runs out and buys grapefruit seed extract, should probably at least read the following links: http://en.wikipedia.org/wiki/Grapefruit_seed_extract http://www.terressentials.com/truthaboutgse.html http://chemicaloftheday.squarespace.com/most-controversial/2010/1/27/the-truth-about-grapefruit-seed-extract.html I have no association with any of the sites linked. I did a quick search on this when the topic came up and easily found lots of articles like these mixed in with all the sites trying to sell GSE. Please note that the articles are not saying it does not work, I just want to point out that it may not work for the 'natural' reasons folks assume. bill

I have such an issue with this. I am accomodating because my child is suffering due to inflammation of the brain. When she is better (inflammation is lowered) she doesn't have these OCD issues. They just go away. I don't feel like people with a pandas child should be expected to just stand back and watch their children suffer. (my dd cannot do erp when she is in an exacerbation and she's better when she's not) We went to a well known psychologist who specializes in erp with children with ocd and she is the one who pointed us toward pandas because of her innabilitiy to help her. She said to me, as long as she still has an active infection, I cannot help her. When her ocd begins to ask too much of me (I do refuse to switch lights on and off for her, etc.) I do take a stand in what I am willing to do or not do. But I do things like bring her food when she can't get off the couch seems like a no-brainer if I want her to stay healthy. what do you think? Good points raised in all of the posts. We also have knowingly been accommodating though still pushing. I help him shower and at the same time constantly try to address his logical self (I'm sure that it comes across as constant badgering). I am caught between he's still sick and can't help it and why can't he just push a little. To remain sane, I tell myself it's like planting trees while the forest fire is still burning all around. Now on the positive side - and after reading my previous post - I should point out that he has been much worse. The majority of his issues are anything with the bathroom. The psychiatrist and psychologist both told us that when he did get better these areas would be the last to get better. Now, he's not perfect throughout the day and can have his moments but the number of times he asks us if we've washed our hands before doing something for him is waaaaay reduced! We can almost always touch him now including hugging. We can have extremely gross boy talk and he does not freak out anymore (well, most of the time). Does he walk around with his hands held in front of him like a scrubbed surgeon still - yep. Will he shove his hands in his pockets to avoid touching others, sure. But not nearly as often. He also opened the 'contaminated' doors several times in the last few weeks without apparently noticing. He walked the dog (dog goes potty, leash connected to dog, therefor leash is contaminated) when asked without (much) hesitation last week. So, just wanted to add a revised post and suggest that 6-7 months into treatment, we are better than we've been. We just do not know if it's the ABX treatment, SSRIs, or time. bill

Dr. Susan Perlmutter, a psychiatrist in Northern VA 'gets' PANDAS as she was on Swedo's research team at NIH. The last I checked though, she is not taking new patients. My son - also PANDAS and Lyme (plus) suffers from OCD. SSRIs keep him and us partially sane from a rage/anger perspective. Otherwise, nothing including the SSRIs, ERP therapies, seeing psychologist and Dr. Perlmutter has made a dent in the OCD. My son - 13 - has zero will power against it. He will argue with us till the end of days but I don't see him pushing back on the OCD one bit. We are coming up on the 2 year mark middle of this month. The doctor we see for lyme associates raging/OCD with bartonella. Throw in the fact that it can apparently take months to take care of the bartonella and looks like more of a waiting game. We started lyme treatment last October; still waiting. We are scheduled for IVIG at the end of June and are holding on to that in case we do not see improvement by then. My son had plasmapheresis prior to the lyme diagnosis. Nada. Now, that was before we started all of this lyme treatment. But I agree with other posts, I don't see how PEX would really help with detox. Bill

clindamycin? I thought mepron was the drug of choice for babesia? Is this a relatively new choice by the doctors? Found this on wikipedia though: "The combination of clindamycin and quinine is the standard treatment for severe babesiosis." bill

My oil of geranium in an almond oil base (10 drops/tablespoon) seems to be working. I put two swipes on my dog's collar and one swipe on her tail once a week. She's 12 lbs; this certainly covers her. A larger dog might need more; I've seen conflicting information on whether or not this might burn the skin (I've not noticed any) so I only apply to her hair. I also place a drop on each of my socks, perhaps a drop on the inside tag of my shorts and a dab at the very bottom of hairline on neck (in case it discolors the hair I can always clip it) before I go out. I've ticks galore and started this at the first signs of ticks about a month ago. Neither the dog or I have picked up any since (that I can see) and I spend a lot of time outside. I've also seen reports where folks say it does not work at all but others chimed in that one has to make sure they buy a quality oil. I found a small bottle at a local health store - think it was $13/ounce so not cheap. Other than potential for burning on the skin, I don't know of any negatives. (Oh and apparently don't use essential oils on cats; don't know why.) As an added bonus, both I and the dog smell wonderful. bill