Bill

"What's the best way to do this? " For context, my son has been diagnosed with PANDAS and Lyme & coinfections. Frankly, I'm not sure we've found the answer yet. What is useful are the experiences, sharing histories/symptoms, treatments tried, links to research and opinions (if not presented as gospel). I respect all. I pursue those that make sense to my wife, myself, my son, and our doctors. What I hope to offer others is simply letting them know where we've been, what we've tried, and the results. Regarding the two forums, we started off with the PANDAS diagnosis and treatments before Lyme. If there is a question asked where we have experiences - I answer and try to remember to caveat my answers with my son's diagnosis then and now which includes Lyme for complete context. What more can we do for each other. bill

My son did not show improvement with steroids. He did not get any worse either. He did PEX with essentially zero results. And then we learned he had lyme and bartonella.... I believe that steroids inhibit the immune system response so if it's only the immune response causing the problems, then inhibiting the immune system provides temporary improvement. If other 'things' are involved and it's not just an immune response, then you may not see positive results using steroids in this manner. I really hate to make a recommendation because I do not have a medical background. Based on my son's experience, I would concur with the doctor. Lyme needs to be treated. Perhaps PEX is an option later. bill

Something else Dr. B. told me that sounds logical (and since I take horrible notes, I wouldn't swear he said exactly this) - he said that one (out of three) of the things that the IVIG helps to do is to shut off the incorrect autoimmune responses. This is consistent with other theories regarding Pandas and Lyme that the immune system turns on and doesn't turn back off ultimately attacking the wrong things. We have opted for IVIG for my son after 8.5 months of treatment for Lyme because if I can shorten some of this after him dealing with it for 8+ years now, I will. The latest 30+ blood tests run by Dr. J. are all negative for the bugs tested but remain positive for inflammation and anti neural antibodies. Dr. J. recommended we proceed with the second IVIG based on these results (just got back). And to slightly change topics - we went went the steroids this time around as my son vomited after the first time. They also slowed the transfer down. No headache, no vomiting this time. Dr. B. does not believe that short term (6 days total) steroids is harmful to a Lyme patient. Just sharing.... bill

Three months is not long at all. Per Dr. J.; 1-3 years is typical. My son will be completing a year of treatment soon. On the positive side, he did not test positive for Lyme or bartonella on the results we just got back. His OCD, ticcing and dystonia are hanging on though. A typical day for my 13 year old son is watching TV or playing games on the computer. He does go to school and seems to be doing well. Two years ago we were not sure he was going to finish one grade or be able to start the next (our summer from #e!!). You and your girl are on a long journey but at least you are on the journey now. bill

http://news.sciencemag.org/sciencenow/2011/08/mind-altering-bugs.html?ref=hp

"But if you'd know about the Lyme prior to doing PEX...what would you do then? " My son had PEX before he tested positive for Lyme/bartonella. The PEX had almost zero effect positive or negative. It is hard to say exactly what I would have done as we were desperate at the time, but, I believe we would have waited. I do not know which PANDAS doctor you are seeing but beware that some of the PANDAS doctors only treat PANDAS and have no clue what to do when Lyme enters the picture. Perhaps that is a question for your doctor - how do they plan to treat the Lyme and why would PEX be beneficial at this time? Bartonella is often blamed for OCD and often is found with Lyme. My son is also still considered PANDAS though I no longer believe strep is playing too much of a role any more. bill

Also pm'ed you.

My son - after a very long road - started with Pandas and then he tested positive for Lyme, bartonella. We eventually came to Lyme when the PANDAS treatments were not working. My understanding is that Lyme treatments should also treat the PANDAS though I guess this depends upon the treatment route taken. My LLMD believes that bartonella is responsible for OCD and behavioral issues - just like strep. It is very hard for any of us to really know what is causing which symptoms. I have no real answer for how to make each day easier. Keeping to a routine helps. Avoiding situations that are likely to invoke negative behavior helps. Picking your battles, helps. On the positive side, my son does not remember the times when he was out of control. We will be forever scarred from the experience but I am thankful that he will not have to deal with any regrets (if his sister doesn't keep reminding him!). Good luck. bill

This is a tough one. My son had severe OCD - though still functional - two years ago when his OCD started. Behavioral/anger issues were the bigger problems for us. It took us 3 months to figure out that Prozac calmed him down enough to make it somewhat liveable. My son appears to be one of the few for which SSRIs actually work. We barely made it through school the following year. None of the therapies worked nor did the Prozac seem to make the OCD any less. We started Lyme/Bartonella treatment almost a year ago. Since then, he has very slowly improved. We continue to "push" him (he's 13 yrs. old) by periodically setting new goals but no more therapies. He did have IVIG this summer. I can't say that we saw any jump in progress regarding OCD; still slow steady progress. He was already doing well behavioral wise but is doing noticeably better immediately following IVIG. We've even been able to lower his dose of Prozac from 30mg to 20mg without any regression. In hindsight, behavior was one of the first symptoms he exhibited - long before we even knew there was a problem! Next IVIG is mid-September. Until someone figures out a better route, I think we are talking about a lot of time. I do think that it was a good thing we waited for the IVIG. And by that - I mean it feels right. I certainly do not have any information to back that up. It just feels right to take some time to knock down the infections for a while before IVIG. Then again, I still think that we as a community fighting Lyme/Pandas/pick your favorite bug are missing something else.... Whew, that was a long winded way of saying that ABX by themselves might eventually knock out the OCD but no one would know at this point what will work for your child. I should also note that we are doing various other supplements, not just ABX. Some combination of everything we are doing seems to be working though very slowly. bill

Very sorry for your loss. Son has been on the following ABX for several months: Augmentin 1000mg XR X 2 daily Minocycline 50mg X 2 daily Azithromycin 250mg X 2 daily Tindamax 500mg tablet Fri pm, Sat am + pm, Sun am only Unhelpfully, my son does not herx or if he does, it falls within 'normal' variations such that we do not notice. He is 13 years old, ~91 lbs. bill

My son had PEX about 20 months ago, unfortunately, it did not help. That was before we discovered Lyme and all though. I noticed that your daughter had dystonia? My son also has generalized dystonia affecting pretty much his whole body. No other dystonia in the family so we are hopeful that it is related to his PANDAS/lyme and can be reversed. Is your daughter currently "cured" of the dystonia? Although PEX was not right for our son, I am hopeful that his treatments will eventually lead to a complete reversal of his symptoms. Just looking for some hope.... Thanks, bill

My son was diagnosed with Pandas years after having his tonsils removed. His first noticeable symptoms were also after having his tonsils removed. However - his adenoids were not removed and I'm still wondering.... bill

Well - I will be blunt. She or her office almost never returns e-mails or phone calls. I found a new doctor. Good does not excuse bad behavior. Sorry - but it's the way I feel. bill

Do not know what the best test is. Son tested positive on the heselae IgG from Igenex (<1:40 is negative; his was 1:80) I recall that my doctor was pleasantly surprised at the positive result - not that he was positive, but that it came back positive. So yeah, must be another unreliable test. I am sure that they can have either one individually. bill

Token "yes" and, I think part of what makes PANDAS vs. Lyme vs. what else so difficult is that many of the symptoms overlap. My son has been diagnosed PANDAS, Lyme, bartonella, suspected Babesia. His symptoms include or have included behavioral changes (anger, violent, PITA), dystonia, tics, dilated pupils, a dramatic decline in math skills, sudden onset and severe OCD (last symptom), picky eating behaviors (a symptom - who knows but started out as a good eater), anxiety, crying out in sleep early morning, ...I'll think of more later. Current doctor firmly believes that bartonella is responsible for behavior and OCD. Unlike others, sound and light have never bothered him; he often only pees twice a day; and his reading has never been affected. He also does not "herx" like others or react to illness in the house or school. No one really knows but.... bill

Thanks! Just finishing up day two of reduced prozac and so far - not seeing anything. Usually by the end of the second day we'd be seeing behavioral changes so even if we have to go back up, it feels like a win just to make it two days. bill

Well - the dystonia did initially respond to augmentin and azithromycin combination. We had a couple of ABX changes early on but every time we dropped one or the other, dystonia got worse. When on both at the same time, got a little better. Unfortunately, progress stopped last winter. I do not want to jinx my son - but - doctor believes that IVIG will correct the dystonia. The doctor was not saying this 10 months ago. Dystonia was one of his first symptoms - years before we realized it really - so it may just be one of those last to go type things. My real fear is damage has been done but....

Yes. His CamKinase II was 126. The only other score worth noting was his anti-Lysoganglioside score of 320 (normal range 80-320, mean - 147). Dr. B specifically pointed to this anti-Lysoganglioside score when discussing his immune disorder. He believes that the IVIG will "retrain" "calm down" "interfere" with current activity (if I've not screwed up what he told me already.) We had the Cunningham study long before we discovered Lyme so I updated Dr. C. just in case it would be helpful to her study. She is an extraordinary person - responding the same day, a Sunday no less - who in part replied. "...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..." I do not have the background to fully appreciate her response. I do hope that her studies continue or at the least someone picks up her work. bill Thought I should add really quick - Dr. Cunningham is a research scientist and responded as such. At no time did she offer medical advice beyond that of her research opinion. I would love it if she did but wanted to make that clear!

Not a doctor and will not pretend to know the answer regarding strep and the immune system. There is an emerging field of study (or perhaps just new to me) regarding MCIDs (Multiple Chronic Infectious Disease Syndrome) where they note that bacteria can lower the immune system response. I've not read it in a while but is seemed to me that the immunodeficiency is more a symptom of the underlying infection vice a genetic condition (if that makes sense). bill

Quick recap of my son, now 13. Temper tantrums for several months when 4 never quite returning to "happy" baseline. Anger more noticeable when 7 plus movement anomalies as year goes on. Anger, violent, severe movement disorder, dilated pupils ... doctors rule out brain tumor, diagnose dystonia. Rule out connection between behavior and movement (huh?) Extremely responsive (within hours) to low dose Zoloft for behavior. Neurologist focus on dystonia. Can not get them to consider anything else. Get on the doctor treadmill (Childrens, Mayo, Hopkins) for 3 more years with symptoms (dystonia) slowly getting worse. Behavior kept in check by Zoloft but we can 'see' upticks there as well. Behavior changes proceed movement disorder increasing.... Two (+) years ago anger returns, dystonia ramps up, and severe OCD hits him quickly. Eyes are almost always dilated. Zoloft stops working at any dose. Start learning about Pandas. Discover low dose Prozac works for behavior after 3 months of ###### in the house. We unceremoniously dump all the doctors we've been seeing. Up till this time (and even now), no sawtooth pattern to symptoms. Every 6 to 18 months, symptoms just get a little worse until the OCD explosion. PEX November 2009 with minimal impact. Some improvement in one foot/ankle. Some improvement to eyes. At three months out even that is gone. Math abilities start a vacation. Still an avid reader. Not sensitive to light or noise - ever. Summer 2010, positive for Lyme and Bartonella. Takes several more months to get treatment plan underway (end of September 2010). Also diagnosed with CVIDs (common variable immune disorder). MRI detects 3 small lesions on brain (August). More evidence suggesting that Lyme has been there for a while.... No herxing. No drastic symptom changes ever. Everything is slow. That's not to say there aren't changes day to day or week to week, but nothing significant. 'Detox' as suggested on these forums do not seem to make any difference. If anything, just annoy him. Some improvements again to foot/ankle over Fall/Winter/Spring but seem to stall by Spring. Tics slowly disappeared last Spring though we occasionally see them. His eyes have slowly returned to normal! Earned a D in math the second quarter but B's in 3rd and fourth. OCD has been ever so slowly improving but still stuck with bathroom routines. Dystonia remains as bad as ever (but no worse)...........so........ That brings us to first IVIG in June, one month ago. Procedure was a little rough for him as he vomited after the end of day 2 through the next morning. Slight headache as well. After it ended though, no further symptoms. The one thing we can positively say has changed has been behavior. He has been doing good anyway but immediately after IVIG we have consistently been rating him 'happy' every single day. His OCD is diminishing but it is difficult to say if this is because of the IVIG as he was on a positive trend anyway. It does 'feel' like improvement has speeded up a little though. Psychiatrist agreed that we should try lowering dose for Prozac. If that goes well then I would be more inclined to believe that the IVIG is playing a positive part. So - too early to tell really. At least no negative backlash. Main purpose for even posting is to provide data for others who do not personally, or have children who do not share the up/down symptoms that many on this forum do or react strongly to medication, detox, illness in home, etc. But - he is diagnosed with PANDAS, neurological lyme, CVIDS, and Bartonella. Just shows how very different everyone reacts. FYI only, below is his current medicine and supplement routine. (Do not go by anything we are doing, talk to your doctor!) He weighs low 90's after gaining 20 lbs since last October! One last note, he takes little in the way of probiotics. We settled on the 1 a day plus the SB every other day as that keeps his bowel movements where they should be. Any more and he gets constipated. Less and it gets watery. I just started the K2 within the last week after following some links posted on this forum. For the most part though, we've no idea what if any of the below - especially supplements - are doing. There may come a day when I simply start stopping stuff and see what happens. But, I've carefully selected stuff that should do him good especially with his neurological symptoms and should not be harmful even if not helpful. Also please note that the below especially the ABX have changed some over the last 10 months; this is just a snapshot of today. We have more consultations in August so I feel sure we will change something(s) then. bill Prozac 30mg daily (will drop to 20mg tomorrow) Augmentin 1000mg XR X 2 daily Minocycline 50mg X 2 daily Azithromycin 250mg X 2 daily Tindamax 500mg tablet Fri pm, Sat am + pm, Sun am only Vitamin K2 3 X90mcg; Jarrow MK-7 from Natto extract Methyl B-12 2mg daily L-Methylfolate 2000 mcg daily Vitamin D 2,000 IU daily Coenzyme Q-10 200mg day X2 daily Vitamin C 500mg daily X2 daily Magnesium 84mg Mag-Tab SR X 2 daily CholestePure X 2 daily (phytosterol complex - 450mg) Probiotic CP-1 1 daily (Acidophilus + Bifidus, 50B Saccharomyces Boulardii + MOS 5B/capsule X 1 daily (Probiotics vary depending on bowel movements) ps - all of the above is greatly simplified in detail. I may have to update as it's likely that I've forgotten a really important detail but otherwise it's a good overview.

Tried NAC in the beginning when son's OCD was most severe. I remember we slowly worked up to the recommended daily dosage and kept at it for a couple of weeks. We did not see any benefit. He had other neurological and psychological symptoms long before the OCD showed up though so likely we are just fighting a different battle.

How soon after starting the ABX did the diarrhea start? Interesting, drugs.com repeatedly stated "Before taking Ceftin, tell your doctor if you are allergic to any drugs (especially penicillins)" How old is your daughter? That may further limit options. You mention diapers so not sure the traditional probiotics you read about in this forum will help. There may be liquid based ones for young children though. Very important to call the doctor if it's that watery. Good luck. bill

"OK friends, I am here to now ask for helpful advice on what to do to prepare for IVIG for PANDAS DS11. I looked past all of that before because I was thinking that it did not pertain to us, now here we are. I see that some of my older posting friends that were hold outs like us have also gone the IVIG route. Praying all is well for you all!! IVIG will be with Dr. B on July 25 & 26. I remember something about drinking lots of water &.....????" Just went through first IVIG with son who is 13. He has been diagnosed with PANDAS, Lyme & co-infections. Dr. B. diagnosed CVID last fall. We waited 8 months before proceeding. As it worked out, I took my son. First time was surreal for me. I think everyone else in those two days had been multiple times before. I had to make it clear that this was our first time and I really didn't know anything. So, some lessons learned. Yes - bring your own food. I was not about to leave my son this first time and only thought to bring some crackers and drinks. A couple of sandwiches would have been better. I think we were there till 2 or 3 each day. As to hydration - well they hook them up to an IV saline drip. My son who pees twice a day whether he needs to or not - part of his OCD - peed no less than 5 times each day. It was all boys when I was there and after the first hour they had a conveyor belt to/from the bathroom. My son held out for two hours I think.... One can't get much more hydrated than that. I did try to keep him drinking at the hotel though of course he did not drink that much. It was cold. Long pants are a good idea; I was fine in shorts with a light weight jacket on. They have TVs plus portable DVD players and DVDs. I think most of the DVDs were for younger kids maybe less than 10 but would not swear to it as we brought a bunch of our own. I read books the whole time. The rooms (six) are all enclaves with no doors so everyone shares the day with everyone else. I add this as my son has reacted poorly in the past when people - especially other kids - got too close. There were no issues but understand that you will not be in a 'room.' My son had mild headaches toward the end of the first day so we were instructed to alternate between Advil/Tylenol. They are also on benadryl. They will give him the medicines there but it is up to you to supply them before/after. We did not do the steroids since he's being treated for lyme. We did lunch at Bertucci's end of day one so did pretty good. They slowed things down the second day but he still left with a headache and started vomiting later that evening. Was not able to keep fluids much less medicine in him that evening. We drove so planned on and did spend the night anyway. At 5:30 the next morning, he woke up not feeling well again. His headache was no better no worse but continued with the vomiting. Dr. B.'s office was great; Dr. B. personally called me back. By 1030 my son stopped vomiting. By early afternoon we probably could have headed home but I chose to just spend another night. By dinner time I don't think he even had a headache. We stayed in the room and took it easy though. We left the next morning at 0530 with him feeling fine - no residual headache or nausea. He did not experience any further symptoms. They will slow down his infusion rate next time as well as give the steriods. Dr. B.'s opinion is that since they are on steroids such a short time, it is not long enough to dramatically impact the immune system. He also stated that the negative side effects were simply from too fast of a rate so they would make a note in his chart and slow it further next time (mid September). They also noted that his next experience could be completely without issue or the same. Each time can be different so not sure how one plans for that. Hopefully I've not caused you too much worry with my son's experience but it can happen. I'm not sure there's a good way to plan for that plane trip home since some kids have side effects immediately and some a couple of days later. Perhaps it's worth asking them to go extra slow especially this time? Best of luck. bill

Still ticked me off. "Unlike lyme disease which presents with a tell tale rash, an expanding red rash...."

No idea why as plantar warts are from virus as I recall. I had one for years that never really bothered me nor would it go away no matter what I treated it with. A couple of years ago I started putting Dr. Scholl's (actually Equate generic brand) on the foot every day. If wearing white sweat socks, I just dropped some into the sock before putting it on. Within two months, the wart was gone. After everything I tried, the solution turned out to be pretty easy. bill