Bill

Yes and thank you. We have some time under our belt with PANDAS treatment as well but only the past four with high(er) doses of ABX. I keep seeing Cedax come up...something I should mention to my doctor I think. We see her this 1 March. One question, regarding "talkative/manic moments with dilated pupils (associate with nerve damage in the brain." Were you referring to the dilated pupils only or the combination of dilated pupils with the talkative/manic moments associated with nerve damage in the brain? And I guess, what do you mean by damage? One of our son's earliest symptoms were the dilated pupils. Most #$((#$*!! doctors stated that the dilated pupils were the result of the medicines..."but doctor this started before the medicines"....blank stare. It was years before I realized that the dilation is the result of the inflammation in the brain. There was a 3 year period when we could not have told you the color of his eyes (pupils covered 80% of the width of the iris most of the time). Just so others know - his pupils are still dilated more often than not but 80% is rare and some days his eyes look 100% normal! They are blue BTW.

This was back in August 2010. I do not recall her specific response though I recall her considering what I said (What I like about her!). As someone else echoed, I get the impression that she feels Lyme is out of her realm of experience to some degree. She did not actively search for Lyme (& friends) though. I brought that up and then followed up with another doctor for the Igenex testing after the standard testing she ordered came back negative. Not faulting her. We are all learning and like everyone else on this board, I spend considerable time searching for answers for just my son. I have great confidence that she will continue to broaden her scope over time. BTW - she recommended we see Dr. J. when she saw the Igenex results. What I am really confused about is why there are not more immunologist involved in this. Fundamentally, all of these come down to (my 2 cents only) the immune system not performing correctly or just being overwhelmed. We talked to our standard allergy/immunologist (two) and neither had any knowledge of these issues nor could recommend anyone. bill

Not sure. Looking at some of my son's results and there is a section called CBC (includes diff-plt) and within... Red Blood Cell count = 3.66 (ref. 4.1-5.7 M/uL) Low Hemoglobin = 11.0 (ref. 12.0-16.9 g/dL) Low Hematocrit = 32.3 (ref. 36-49%) Low I do not remember the doctor using the term enemia when reviewing the results but I know she used all of the results looking for 'markers' like low vit. D.

Hey Wendy - remind me again how far you guys are into treatment? My son is also on the augmentin/zithro/weekend tindamx regimen now some 4 months into it and we are not seeing positive trending. I finally put my data points into Excel and there is negative trending since middle of December consistent with what we've observed. Well - one foot/ankle getting better and eyes look better so that is positive but OCD and behavior are worse, walking and handwriting are not improving. Of course OCD and behavior could be because we reduced his Prozac from 30mg to 20mg in the middle of December as well , but, that would also mean we are not seeing clear improvement either (except eyes/ankle). Too many variables!!!!!!! bill

Me too. Last time we saw Dr. L. I basically asked her why the PANDAS and Lyme doctors were in different camps. Seems to me that any bacterial infection causing these issues is kind of the same problem. The type of bacteria involved and symptoms will dictate the course of treatment. I like the idea of getting rid of the current names (PANDAS, chronic Lyme) and moving to a more general term that cover all.

Nothing to add other than, yep - spacey seems to come with the territory. Sometimes we have to literally "YELL" to snap our son back into reality. He can be staring straight at me when I'm talking to him and not hear a thing. It's frustrating but I keep reminding myself it's just part of this insidious illness. Forgetting things is common too. Oh yeah, we had his hearing tested just to be sure! bill

i would think there are drs who are skilled, trained, experienced or whatever in that and those that are not . . . our experience was we had a useless pediatrician practice when ds first showed symptoms. he was in that office maybe 4 times from late Oct to Dec with behavior, intense ear ache etc. they ran titers b/c behavior therapist suggested pandas. threw him on a CYA 5-days of azith and shrugged it off. each appt they checked ears and nose. we found a new ped who took titers seriously and gave me credit for having a brain. he said he thought sinuses still a problem by way nasal tissue looked and ordered sinus CT which showed all 6 sinus cavities infected. we never cultured it to be sure it was strep but made the assumptions b/c high titers, + throat culture and pretty classic pandas. had a second which showed improvement after keflex. not sure why MRI wouldn't show but there may be an old post on pandas forum that says something about sinus MRI and CT -- you could search or post a ? just saying. . . if you trust Dr. B otherwise, i'd say that adds to his effectiveness, not detracts. Yes, not questioning his skills. More surprised by lack of others I suppose.....Well okay - after 5 years I question all doctors now! : ) Did just occur to me that my son has braces. Image of sinus area may not be too clear. Also, last MRI was August, Dr. B. saw him early October. Son also has allergies so would tend to keep his sinuses inflamed. Thinking out loud in this forum helps me think through these. Thanks, bill

"odd little clues that lyme may be involved". That was sort of my thought when I posed the question. My son is sick much less frequently since all of this started than prior. Now, having said that, he was on the toilet last night most likely with the virus that is going around. He was fine this morning though whereas I stayed home two days this week and still am not 100%. I think Buster was compiling a list of symptoms but on the PANDAS forum only? Perhaps we should compile a list of symptoms all of our child display. It would take me days to list everything as so much has become normal : ) We are still trying to decide IGIV or not for my son...was able to get additional explanation from our local doctor. I'm not going to be able to convey this correctly but the theory is that while there is an infection, antibodies will be made (and presumably attacking the brain) causing inflammation. If the immune system is boosted using IGIV, then the correct targeting of making antibodies directed at the underlying bacteria can then be made so the inflammation will decrease. The recommendation for IGIV was made by Dr. B. after noting that there was no increase in immunoglobulin production to strep after identifying an active strep infection. I assume this was in reference to the serotype testing performed. Also, Dr. B. diagnosed strep by looking up his nose and 'seeing' it noting that most doctors were not trained to see it by sight (I guess by the way the nasal tissue appeared). That's the only part that makes me a little nervous - why couldn't any other doctor or MRI see this infection? On the other hand, infected/inflamed tissue probably looks like a lot of things but to an immunologist who sees this day in/day out.....

I'm sorry. And I do not have any real answers for you. Our son initially responded very well to low dose Zoloft and now responds well with Prozac. Definitely not our choice but for him it has made this bearable. At its worst - after Zoloft stopped working and before we found Prozac, we did forcibly carry him to the ER once. Once there, he calmed down pretty quick and thereafter did better getting himself under control as he knew we would take him back. Prior to using the SSRIs - when he was 4 and years before we realized these were not the terrible twos greatly delayed - I can tell you that I sometimes physically restrained him for over an hour at a time until he became too exhausted to fight anymore. If it helps at all - our son does not remember any of those times. I hope he never does.

I note that a lot of kids on the Lyme and PANDAS forum "respond" to exposure to various illnesses. My son (PANDAS, Lyme & friends) does not. Period. Period with caveat, if he does, I've never noticed it. I do not recall him getting worse even when he was not on all of the ABX. Anyone else who does not respond to illness around them? bill

I'm afraid my response may not help you much but.... A steroid taper was tried with my son and we saw no effect. I think total time was 7-10 days but do not remember. My son was diagnosed with PANDAS but has since tested positive for Lyme and bartonella with babesia suspected. bill

3 ABX (+) seems to be a norm around here. He has never been tested for candida. A few times he's had loose bowels but no more than the rest of us. My son currently: Minocycline 50mg X 1 daily Azithromycin 250mg X 2 daily Augmentin ER 1,000 X 2 daily Tindamax 1 tablet Fri pm, Sat am + pm, Sun am only Artane: 2mg daily Prozac: 20mg daily B12 2,500mg periodically Vitamin D 2,000 IU periodically Coenzyme Q-10 200mg day Vitamin C 500mg periodically Florastor 2 daily (Saccharomyces boulardii, 250mg) Probiotic CP-1 2 daily (Acidophilus + Bifidus, 50B) Saccharomyces Boulardii + MOS 5B/capsule X 1 daily

My son is also on Augmentin XR and Zithromax daily since middle of December plus Tindamax but only on the weekends. Actually more complicated than that as he was on that combo in October, then something else was tried but we felt that it was not as effective so went back to it. Our local doctor added minocycline when his OCD started kicking up last month. We noticed increased anxiety each weekend for the first couple of months (assume tindamax). Now, not sure we see much except maybe his eyes get that purple circle underneath by Sunday morning. When we asked how long he would be on the Tindamax, doctor said "Until you don't see a reaction anymore." Our next appointment is early March; I'm guessing it will be time for a change. IGIV is being recommended by Dr. B. but you will find that a number of other doctors believe that the immune system will eventually recover after the Lyme has been successfully treated. We are still trying to decide given the persistence of his OCD. Do you know why IGIV was recommended for ds but not for dd?

Excellent video! 5 years ago an MRI of my son's brain was normal. This past summer, two small lesions "consistent with lyme" per the report. I understand that lesions in this case refers to a difference in density - read inflammation.

What is the standard protocol? As an experiment, I tried: Nattokinase 36mg X 1 (Sat. night/Sun morning) Lumbrokinase 20mg X 1 (Sat. night/Sun morning) EDTA 500 mg X 1 (Sat. night/Sun morning) I think this was 30 minutes after the two enzymes. one weekend (should say, gave my son). I like to try things on the weekend just in case. He felt sick to his stomach on the first dose. I only got him to take the second by promising we would wait a month before trying again. He was fine on the second dose....I am hesitant to give the EDTA too long though as I read one has to be careful and provide supplements to replace essential minerals it removes. He's on enough right now so I'll probably wait until we can talk to the doctor.

One example I've used is to ask them if they are familiar with Rheumatic fever (technically I guess Rheumatic heart disease). Seems like everyone knows that strep can affect the heart in extreme cases. If they are, I then hit them with "well sometimes instead of the heart, strep can affect the brain." That usually stuns folks into silence. I'm not sure it's worth going down the Lyme vs. strep vs. bartonella vs. whatever discussion. My son has all of the above and at this time, there's no way to know what came first or which one is causing what symptoms so the quick answer works without slogging through the complexities. bill Quick edit as I realized that it is not clear to me whether it is the bacterial infections attacking the brain directly or it is the body's antibodies being tricked into attacking heart/brain cells. Does anyone know which is the case?

Hi. For me, I was looking for a way to record his daily "status" quickly, something that I would/could do every day. A number scale will also let me chart using Excel. I've not done that in a while as I do not want to bias myself. Now for your question....I analyzed my son's OCD behavior trying to differentiate between what made a good day vice bad. I realized that no two days are exactly alike and much of that had to do with what he was doing each day. It is difficult to score him when some days he only sits and watches TV all day long (which I now call cocooning) vice going with us to the store. An example of "Functional with triggers" might be where he is essentially fine until someone brushes up against him at the store. This might set off a contamination concern. On a '3' day, this would resolve itself. If not, the '3' day might become a '5' (persistent). I know it's getting worse when he starts tracking what we are doing and whether we are washing our hands - Others contaminated '7' My scale is not perfect as it's very subjective. I suspect my son is no different than many of the children here who also have learned to 'hide' their OCD. It gets really hard to score when he might spend hours playing with a friend only to suffer the aftermath in the evening when we have to wash his bedding because his friend sat down on the bed or turn over the couch cushions because he sat there....yes, happened last week. : ) Some thoughts on your other comment..."And there doesn't seem to be anxiety associated with the compulsions -- he just has to do them" There are a lot of rituals my son has to do. He is not anxious at all while doing them....ask yourself this though, what if you would not let him do them? I've tried that many times with my son (on the advice/direction of doctors); anxiety is through the roof pretty quick. The compulsions are his way of relieving or preventing the anxiety. I'm not sure regarding OCD for the tics. My son has generalized dystonia and tics. Both likely caused by these bacterial infections....His anxiety can make either or both worse. How well rested he is plays a part. As the day wears on they can get worse if he is active. Now that he is being treated for Lyme and is on all the antibiotics, I see the dystonia and tics changing. There seems to be more jumpiness to his muscles. I liken it to having a charlie horse whereupon releasing the muscle jumps rapidly as it lets go. That may be 100% incorrect but thinking about it like that gives me hope so I'm sticking with it. Dystonia is sustained muscle contractions cause twisting and repetitive movements or abnormal postures. As such, it is a label and not very helpful (as I bluntly told Dr. Singer at John Hopkins). Helpful? ps - I have not stayed at a Holiday Inn Express any time recently!

Hi Wendy, my wife was finally able to speak to the doctor today. He indicated that it was possible for my son to recover without IGIV but that it would take longer.....One of our concerns of course is multiple psychiatric doctors have stated that the longer he has OCD, the less likely he will make a full recovery. We are coming up on two years no breaks........None of the therapies made a dent. He simply has zero will power against the OCD. Well, they have not received approval from insurance so I have more time to think about it. With more storms predicted for the East Coast next week, I'm also not anxious to travel right now. I'm leaning towards waiting another month. thanks, bill

Hi Joan. My son had PEX November 2009. Please note that we had PEX before we had positive tests for Lyme bacteria, bartonella, and possibly babesia. I emphasize that as PEX had minimal to no effect on my son positive or negative. The only improvement that I could point to was that his almost always dilated pupils became less dilated over time. Now that we are using multiple antibiotics for Lyme (& friends), his eyes have really improved. My son also has generalized dystonia and we believe we noticed some improvement in one foot/ankle but nothing sure. Again, now with multiple antibiotics we are really seeing some improvement with the foot/ankle. The process itself was not too bad. As others have noted, removing the bandage is a pain and really hurt! We were close enough to drive so can not comment on other choices for transport. Do I think PEX was worth it? I don't know. We made the best decision we could with the information we had at the time. PEX ultimately may have done more for my son than we realize. Perhaps w/o, we would not be seeing the improvements today. Good luck. bill

Hmmmm indeed! May I ask, what dose of Augmentin was your DS given and for how long? And was it the regular Augmentin or XR? Augmentin and a low dose SSRI seems to be our "magic combo," also, if there is one. This was 1 1/2 years ago when we first started the PANDAS journey and I was not keeping records. I'm pretty sure on augmentin though not precisely when we started it nor the amount. I do not believe that it was XR and am pretty sure it was minimal dose just because the psychiatrist could prescribe it and knew it would help to prevent further/future infections. Our next appointment is February 7th. I'll ask her then.

Hi Bill -- Boy, does your story sound familiar! Our DS was first diagnosed with "regular OCD" at age 6, and at age 7, when his second "flair/exacerbation" hit, he was prescribed a low dose of Lexapro. (Both at the first onset and this first subsequent exacerbation, I inquired about the possibility of PANDAS but was waved off.) Whether purely health-related coincidence or some contributory (anti-inflammatory?) effect, DS did very well over the next 4.5 years with periodic CBT and the low-dose Lexapro. Then, beginning in Spring 2009 and sort of "hitting the wall" in October 2009, he hit an exacerbation that threw him into a downward spiral and, at that point, not only did the Lexapro not work, but neither did Prozac, Zoloft or Luvox. It wasn't until after several months of antibiotics and we began to try low doses of SSRI's (first we reduced his Luvox dramatically, then switched to low-dose Zoloft) that we saw any positive impact by the SSRI again. And like you, it definitely isn't as dramatically positive at this stage as it seemed to be 5 years ago, but we do see some positive gains with it. I don't know about you, but I've been left wondering just how all the pieces fit together. Was he healing on his own successfully at an earlier age (re, without the added help of abx) and that's why the Lexapro seemed to help him for so long? Or was the Lexapro entirely ineffective and it was just a coincidence? Or did the Lexapro somehow help protect him for that period after all? Or did the Lexapro help mask some of his behaviors for a period until his auto-immune reaction became so severe that it burst through the SSRI? On our end, we haven't seen any distinct personality changes with the SSRI's. In other words, he hasn't become "unnaturally good natured," just less stressed out and better able to manage the remaining OCD tendencies. Now, with some of the other psych drugs we were given during the depths of his illness, before abx -- like Seroquel, Risperadal, Zyprexa -- THOSE made huge differences in his personality (deficits, actually, I would say), and we're determined never to go back to those! All the best to you and your DS! Thanks much Nancy. I should also clarify my statement (new to posting on the boards, still learning be careful with how I phrase things) When I stated "unnaturally good natured," I was really referring to the fact that he had no reason to be as upbeat as he was. For example, he might be in the throes of an OCD ritual, I'm yelling at him to push through it, and he remains calm and smile the whole way through. (Please tell me others lose their patience....) So like your DS, no personality changes. It's an interesting question regarding SSRI vs. healing vs ? In our case, I periodically would try to lower the dose with Zoloft by just 1/2 tablet. In all cases, we would be forced to go back up within two days. For him, SSRIs have made a world of difference. BUT - and this is the value of this forum - he might have started an antibiotic at the same time he started the Prozac. It was all around the same time that we got in to see a PANDAS knowledgeable psych who also prescribed augmentin - I think, yep, wife just confirmed. Prozac and augmentin started same time. Hmmmm

My son has been diagnosed with PANDAS and Lyme, bartonella, suspected babesia. When behavior became scary five years ago, we relented. 12.5mg of Zoloft provided relief within hours. Son was 8 at the time. After ~4 months we rose to 25mg. Zoloft work for almost 3 years at that dose. Then OCD slammed into his life accompanied by extreme raging. Going up to 100mg had no effect. It took several months to get to prozac. I forget the original dose. The response was not as dramatic as we saw with Zoloft but within a week. He was on as high as 60mg. We now have him down to 20mg. At 20mg I would say he's edgy but I prefer that he be that than unnaturally good natured (if that makes sense to anyone struggling with these behaviors). We still work with Dr. Perlmutter (past 1 1/2 years). She has never found a combination that touches his OCD or does better for his anger issues. She continues to monitor while we treat everything else. We don't like it. I don't advocate for them. It works for him - right now. We are ~3 months into treatment for Lyme..........There is no way to know if Lyme (and friends) or strep was first. When we started Zoloft, it would be 3 more years before we ever heard the term PANDAS and more than 4 years before we discovered Lyme and friends.

I also plotted the first six weeks of data in Excel looking for correlation between medications and scores. Correlation with Tindemax on weekends was clear. I do not keep it up to date, probably will not plot again until later in February as our next appt. with LLMD is 1 March.

Tracking symptoms has always sounded easier than I find it to be in practice. Oh, I start off good but then miss some days.... I developed the scales below so that I could just record some numbers each day. The scales are geared to my son's symptoms and is helped by the fact that his symptoms seem to remain constant over time. I use a spreadsheet with each row a day and have a column for notes. Not perfect but better than my previous system. Scales 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 Cocooning/Constant Fingers 7 6 Picking Fingers Often 5 4 Some Finger Picking 3 2 None 1 I define cocooning as sitting on a chair, wrapped in blankets, watching TV all day long.

Thank you for the advice. I understand regarding the prozac. Those drugs scare me and we are anxious to see him off as soon as possible. Your other insight is spot on as well. I think (I hope) I mentioned that the medicine list I posted was his current and while the antibiotics stayed relatively stable, we were changing a lot of other things during December. For example, we lowered his Artane from 12mg/daily down to 2mg daily (under neurologist direction). His mood was so good, we did lower his dose from 30mg to 20mg. Had a rough couple of days but he evened out again. Hmmm, just checked my "medicine" record, his OCD started increasing about 2 1/2 weeks after dropping the dose for prozac. It has a very long half life so not out of the realm to consider it as an impact. One of the reasons we are trying to reduce these medicines is so we can more accurately gauge progress. We are remaining steady for the month of January but will likely drop the remaining 2mg Artane in February. I know those changes are probably masking changes (good or bad)... More contact with Dr. B.'s office today. They want to cancel our appointment on Monday and schedule for the IGIV instead - yes next week.....my wife reminded them that I have questions that need to be answered. Tentatively expecting a call from the doc on Thursday. Although it's a road trip for us, I'm inclined to keep Monday's appointment so I can have my 15 minutes face time. The IGIV is an option that need not be rushed. He said on our first visit that my son's OCD would not relent without IGIV but I was too tired/frazzled to follow up with a question (or did he get called away and I forgot by the time he came back). He has repeated the (14) serotype testing and basing his decision on those results (or basing insurance approval). As far as I can tell, all of his numbers are lower than they should be - 10 out of the 14 are < 0.3 mcg/ml. I have to apologize again. Waiting so long to post means I'm not posting the whole story at once so I'm asking folks to weigh in based on partial evidence. Thank you, bill