Bill

We believe chronic neurological Lyme (or TBI co-infections anyway) based on symptoms that my son experienced when he was 3.5 yrs. old that caused current doctor to test for bartonella. While lyme via Igenex was igm only positive, there was no question on the bartonella. As my son started raging when he was 4, symptoms of dystonia by 5 or 6, we know that something went neurological long ago (he's now 13). What took us on the pandas route was his sudden development of OCD 2 years ago. Until then, we could not get anyone (doctors) to listen to us when we told them the dystonia symptom increased shortly after his raging increased. Sigh...... Our doctor attributes (sees) raging and OCD symptoms with bartonella. Same as PANDAS so who knows who is right or if it even matters at this point. bill

We found that Shea Butter liquid hand soap was the least irritating for my son. bill

My son's anxiety rises on the weekends with Tindamax. We start Tindamax Friday night continuing through Sunday morning allowing him some time to recover before school Monday. (1 tablet Friday pm, Saturday am & pm, Sunday am) I honestly do not know is if this is herxing or a side effect reaction to the medicine just like a cough medicine will make some kids hyper. Like many aspects associated with TBI and treatment, you probably won't know until you do it. Happy Holidays, bill

I'm not really offering advice as after reading previous posts, you are dealing with a lot more than I understand. Also, what worked for my son is not a popular choice but for daily raging, our son reacted very positively to SSRIs. First Zoloft which worked for 3 years (never more than 25mg) and now prozac which has worked for 21 months. Currently on 30mg/day; son is 13 and weighs 90lbs. Our goal is to get him off of them as soon as possible but it came down to committing him (or ourselves) or going with what works. Again though, my son's issues/symptoms much different from your situation so not sure it even applies. Best of luck. bill

Curious about this as well since my son 'failed' most of these. Having said that, what is a fail? We never got a follow-up with Dr. B to review the results so I did research on my own. There does not appear to be a consensus on what a failure is as it varies person to person based on age and general exposure history. TIA - bill

This is not directly a response to your questions TMom but your note got me to thinking about some additional information I can share. Earlier this year I updated Dr. Cunningham on my son's progress and additional information that he had tested positive for lyme and co-infections (well really just bartonella) since we tested with her. Also worth noting that some doctors think my son was infected with TBIs for over a year and others under a year at the time of testing. My son's Cam Kinase II score was 126 - so pretty borderline. Below is her response. Thank you very much for emailing us. We will put this email in his file as we do need to know this information because we are beginning a statistical analysis of our large cohort of patients. 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. So if I'm reading this correctly, the "infection alone" portion (vice autoimmune) might be the clue that my son is dealing more with TBIs (or other infections) than the Pandas right now. This is all in hindsight but I'm confident that research like this will ultimately focus us on the correct options sooner. That is after we spend years finding doctors who will listen to us! bill

Realized I did not answer your question in the title of your post, "What made you think Lyme?" Our son had PEX and had almost zero response. His eyes became slightly less dilated over several months and one foot/ankle seemed to be slightly less stiff though that was fleeting. So for us, the lack of a response to traditional Pandas treatment (including ABX) led us to lyme. For the record, he is still diagnosed as Pandas plus chronic lyme. I like the term MCIDS better (multiple chronic infectious disease syndrome). bill

My opinion in response to your questions: Lack of a rash is meaningless. Dr. K. should know that. I do not advocate pushing for the test necessarily but pay attention and continue researching. I do not know your son's history. Trust your instinct. The problem with lyme testing is that there is often no clear cut evidence. A lot of it is clinical diagnosis. But wait - that's what our son's pandas diagnosis was too, a clinical diagnosis. Lyme diagnosis, like pandas diagnosis, continues to mature. Neither is without fault and there is a lot of trial and error along the way. I think the lyme doctors have gotten better about being able to treat for short amounts of time to bring out the bugs and hence positive test results if they are to be had. My son fits neither the classical Pandas or chronic lyme patterns so there you go. Perhaps he has neither and this is just a stop on the way. But thanks to everyone's input on ACN, at least we still have areas to pursue. bill

Doubt you were bit as it probably washed off before he had a chance to grab you. Showering/bathing after being outside is the best thing one can do (though not practical many times). Also read that one should throw your clothes in the drier for 30 minutes as ticks are not tolerant of the heat. Again, I know that I will not be doing that every time I'm outside. I'm currently using 1 tablespoon of almond oil with approximately 10 drops of rose geranium oil. I put a few drops on my dog's collar every week and one swipe on the long hair on her tail (Shih Tzu). Other sites have said to put a line straight down their backs much like you would the commercial insecticides but I understand that the rose geranium oil can irritate the skin. I took the dog walking through our back yard tonight putting a few drops on my socks before I went out. No ticks. Ten minutes after we came in I watched 11 deer walk across the same area we did. That is pretty much a twice daily occurrence (morning & night). Our record is 24 deer at once. Since starting this, I've only found one listless tick on her tail and that was before I put the oil on her tail. Prior to using the oil, we found several ticks on her and in the house in a few days. So far so good with this mixture. I'll keep everyone updated as the year wears on. I too am freaked about the ticks though. I grew up outside and never gave them a second thought. Even though I lived in the country, never seemed to get many; even the dogs would not get that many. Now....not sure what to do. Seems like the ticks are everywhere. I started taking Cat's Claw as I had the bottle just sitting there. Suppose my thought is that perhaps it will help prevent infection when I do get bit. And actually, I've pulled multiple deer tick off myself in the last decade. Tests are negative but I suspect we all have it too. Concur with others, don't bother moving. Not sure where you would go to escape them. I think for all of us here, outdoor life will never be the same. bill bill

Our son had a neuropsychological test years ago when we were still trying to figure out what was really going on. I glanced at the document and have to strongly agree with the following statement: "Due to the complex nature of Lyme disease it is preferable that the child be evaluated by a neuropsychologist with a specialty in tick-borne illnesses." I would change it to should be evaluated by a neuropsychologist with a specialty in TBIs. I did not find the evaluation for our son useful. Although it discussed his lower than average organizational skills and recommended some coping mechanisms, it didn't really matter since he had (has) no self will to implement the coping mechanisms. Again, this was well before we ended up here. I wonder how the evaluation would have differed it anyone had known then what we know now. bill

Because like most other things....it's on my list of things to do. Thanks for the reminder. bill

My son has seen Dr. L. I think that she is more lyme aware now but I was the one who pushed for Lyme testing last Spring. She ordered through Quest (neg). I did my homework and found another Doctor that ordered through Igenex (pos). She seemed honestly surprised that the results were so different. At that point, she suggested we see Dr. J. in CT. What gets confusing is that she also stated that yes, she's seeing quite a few kids with Pandas and Lyme - but - she never tested for Lyme until I brought it up. So, as others have stated, worth it to see her for the Pandas but you do need to rule out Lyme as well. My son did not improve with PEX and it's likely the Lyme is the reason why not. I am confused why she's not more on board with the Lyme since the end result mimics PANDAS often causing neurological issues (she is a neurologist). A good Lyme doctor will probably effectively treat for both anyway. I guess my final opinion would be to keep the appointment but be ready to pursue lyme testing as well (assuming money is not an issue). If money is an issue, I might rule out lyme first. bill

Oh no. His treatment is a lot more than tindamax. Tindamax is the only thing that we thought produced the closest thing we see to a herx. I can't tell if he's better this weekend or not without it. We see "progress" but sometimes wonder if the progress is real or just his symptoms changing. For example, he has dystonia which I am almost positive is the result of this stuff. One foot/ankle has gotten better since the start of treatment as has his eyes, appetite, math; but OCD and 'tude (what we call attitude) and other dystonia related symptoms are either worse or no change. Even before treatment, things changed so it is hard for me to accept that the positives are really positive. How do I really know what to attribute to treatment or just random changes. Progress??? That's what's bothering me. Not sure we really see progress. Adding some things based on SFMom's insight. Will try to hit detox harder. He went off his probiotics for a couple of weeks but now is admitting that perhaps he was better with them. Problem w/o is as you can guess. With probiotics and he gets constipation on a low dose. He's now agreed and is taking some bentonite clay and adding fiber. I'm keeping the doses low to not overwhelm him though. Just ordered CholestePure for detox; see what happens. Also ordered magnesium per Burrascano's guidelines to see if that will help with his tics and muscle "jumpiness." Hoping SFMom is right and perhaps our not seeing reaction to ABX is because his body is overwhelmed as is. Until we remove some junk.......... This will sound strange but I really just want him to react like others here so that I know he is on the right course finally. Until then, I was hoping others would say "no solid herxing here" but still worked out in the end. Thanks to all. Just need some reassurance......(Wendy - I promise to take some deep breaths and continue waiting.) bill

Son has been in treatment for lyme for last six months. In the beginning, pretty sure we saw the ups/downs with tindamax on the weekends but we have never seen dramatic "herxing" otherwise. Even the weekend tindamax reaction seems like a dream. We're not giving him tindamax this weekend just to see if there is a difference. We have seen long slow progression of OCD and of course the daily ups/downs but nothing dramatic. I'm charting but nothing jumping out at me. No ABX introduction has resulted in anything significant. The biggest thing I've seen is that his poor handwriting became illegible. Since he won't consent to hand writing testing often, my points of reference are a month apart. Pretty confident of the lyme plus coinfections as he was positive via Igenex for BB and bartonella. We will test for babesia in the next two weeks. Anyone else with a child or self who does not show dramatic changes? I'd kinda like to see some severe herxing to gain confidence in the treatment. (And to those living through severe herxing - I'll apologize ahead of time as I know it's traumatic.) bill

From what I understand, both can cause tics. I think (think) that since either can affect the brain, both can cause neurological symptoms to include both behavioral and physical. bill

Hi. What part of Virginia? There's Jemsek in D.C (http://www.jemsekspecialty.com/). We've never seen him and not sure what his reputation is. I was told that he may not be best for young children. There is someone in Maryland - another Dr. B. Not sure what his full name is but I think it is Paul V. Beals. His reputation is either great or horrible based on what I've read. Again no personal experience. Your best bet might be to start asking around to include local lyme support group members who may know of a doctor willing to treat lyme. bill

My son's last MRI shows 2 (or 3) white spots associated with inflammation. As I understand it, the findings are consistent with Lyme but as you noted, not specific to lyme. My son's first MRI - 5 years ago - showed no irregularities. I remember asking about the various scans years ago when we were trying to figure this out, specifically ones that might show inflammation/enlargement of the basal ganglia. Our neurologist said the problem with these tests is that one has to know the baseline. It is difficult to tell small differences in brain structures without having a baseline for that individual. bill

He was on Custom Probiotics CP-1 2 daily (Acidophilus + Bifidus, 50B) and Saccharomyces Boulardii + MOS 5B/capsule X 3 daily since early January. Prior to that, it was Florastor 2 daily (Saccharomyces boulardii, 250mg) and Probiotic CP-1 2 daily (Acidophilus + Bifidus, 50B) for a couple of months. He complained about that just as much. He will eat yogurt when we remind him. His stools remain fine. We only started him on the probiotics on the advice of those here. We are also off the augmentin for now (currently on minocyclin, azithromycin, cedax, tindamax). Our doctor mentioned that augmentin is the really hard one of the GI system. Worth noting that he does not really herx like most here. We see gradual changes. Still seeing bumps on the weekends with the tindamax but nothing drastic. bill

No - in all this time, I still do not know what NRT/ART is? Can you explain it in simple terms? And yes, maybe his body does know. That and he's close to 13. It might simply be that he needs to call the shots on something to feel in control. As long as I don't see any negative signs..... Thanks, bill

No other reason to post than for folks with children (or themselves) who may not fit all the symptoms and/or respond to treatment the same way as many... So I've mentioned before that my son is NOT sensitive to light (even when his pupils were at the largest) or how we have to keep telling him to turn the TV down (not sensitive to sound at all). This of course is opposite many kids here who have light and sound sensitivities. Well - now we can add that he seems to be doing better without probiotics than with. He's complained from the start about them saying they made him worse. So - last week I let him call the shots in regard to the probiotics. He claims his bowels are - and admittedly seem - better. Detox? Just bought charcoal tablets and bentonite clay. He won't have anything to do with them. They sit on the counter mocking me. Happy Friday. bill

Can not really interpret for you but I did research this some time ago. Here is what I found. The serotype results are a measure of the Pneumococcal Vaccine Response for Streptococcus pneumoniae IgG Antibodies by MAID. The 14 serotypes tested is the most complete test from what I can tell. It looks like one would test before/after vaccination to determine effectiveness of the vaccination. They look for a 2 - 4X increase in the numbers. No minimum has been defined or agreed upon because these values vary by age/exposure/etc. I have to apologize, I no longer have a reference and do not remember why these numbers are less than values. Serotype Normal Value 1 (1) <8.2 2 (2) <7.4 3 (3) <6.9 4 (4) <4.1 5 (5) <28.8 8 (8) <13.3 9N (9) <16.6 12F (12) <4.3 14 (14) <22.9 17F (17) <44.8 19F (19) <16.0 20 (20) <12.1 22F (22) <32.4 23F (23) <49.0 6B (26) <15.3 10A (34) <25.5 11A (43) <9.7 7F (51) <30.8 15B (54) <12.8 18C (56) <7.0 19A (57) <28.1 9V (68) <44.0 33F (70) <7.5 I also found the below from a site that is no longer coming up. (Actually it is but looks like it's no longer what it was so won't paste it here in case it's now malicious. If I recall correctly, numbers below those below were indicative of an immune deficiency. Most of my son's values were < 0.3; all were below these numbers. Dr. B. did diagnose my son with CVID but I still have not had a follow up to confirm why he determined that diagnosis. I assume his serotype values but only an assumption. Serotype Postimmunization 4 (4) >1.9 6B (26) >11.2 9V (68) >2.8 14 (14) >5.2 18C (56 >2.7 19F (19 >1.7 23F (23 >2.9 bill

No. No doctor informed us of positive or negative regarding also Lyme. Dr. B. (CT) would like to do IVIG to combat the OCD which he believes is brought on by the strep bacteria. Our Lyme doctor has seen OCD and behavioral issues with bartonella. It's not clear what if anything IVIG would do if bartonella is the cause. My son had PEX in November 2009 when we had a PANDAS only diagnosis. By January 2010 we were able to report that his severely dilated pupils were perhaps a little less so and one foot/ankle that was rigid seemed to be a little less so. By February 2010, we believed we imagined what little progress we saw. OCD/behavior were not touched. Summer 2010 we received positive for Lyme and Bartonella (via IGENEX testing) and suspected babesia. At this point, I wonder if strep bacteria (PANDAS) is an issue for my son at all. In our case (or should say his case), PEX appears to have had little if any effect. Having said that, and now that we are several months down the road with treatment for Lyme, we are seeing positives in several different areas. Who am I to say that PEX did not play a role? Several of the doctors believe it's likely that all of this started some 9 years ago for him. My gut tells me that without properly treating other co-infections, PEX or IVIG would probably be a wasted effort. If bartonella is the cause of my son's OCD and not strep, then perhaps IVIG would be a wasted effort as well. For me, that's the real question, I know he has bartonella (in as much as I believe the testing); I do not know he has an issue with strep. bill

Found a tick on the dog the other day. Considering we generally see 1/2 dozen deer from our back windows morning and night (24 is the record).... The dog had a vet appointment anyway so added a tick collar to the bill. Neither child would touch the "poisoned" dog once we put it on. So this morning, the new collar goes into the trash, the dog and associated blankets are washed. Time to try Rose Geranium essential oil (recipe below). Directions say to put a couple drops - no more - on the dog's collar every week. * 2 tablespoons vegetable or nut oil (almond oil contains sulfur, a repellent in its own right) * 10 to 25 drops Rose Geranium essential oil Combine the ingredients in a glass jar; shake to blend. Makes: 2 tablespoons Shelf Life: 6 months There are other natural solutions. We'll see how this one works.

Bill, can you give info on what the methylfotate might do for your son. Do they think his system does not methylate well? Is he depressed, tired? Just curious for my 13 year old, not doing that great right now. Our doctor was specifically trying to address his anxiety (as he sat in the exam room picking his fingers to the bone) and detox. Here is a link to an article I found on the TownsendLetter site but have only glanced through (who has time to read articles anymore?): http://www.townsendletter.com/FebMarch2011/b12psych0211.html Sorry, gotta run already - my son is in the bathroom (and has been for over an hour) and I'm up to help with shower. Hopefully I get to bed before 11 tonight. If I get a chance to read the article, I'll post more. bill Read the article last night but too late to post and now I've forgotten half of it. Comes down to one doctor's experience with methyl B-12 and how it's helped with multiple psychiatric conditions he has seen or studies he's followed. I won't try to decipher the article - I just do not have the background for it. Main point for posting again is that I also browsed around the web site a little bit more. I do think there are some good nuggets on the site but I also ran across several self promotion type articles. I'm going to suggest that this site (TownsendLetter.com) is one that should be read with caution.

Dr. Keith Saylor (psychologist) works with kids with OCD and he is familiar with PANDAS. His office is in Herndon VA. I do not know if he is accepting new patients (we no longer see him) but he or his office may be able to refer you to someone else. Our experience was very good. bill