GraceUnderPressure

I have one child who is hyper distracted & two who are low key, spacey kind of distracted. They all do better when I limit external distractions as much as possible & I try to give them their work in small chunks broken up by something that gets them physically moving. My hyper ds likes to bounce on a mini-trampoline or run up & down the stairs (my slightly dyslexic dd did much better learning her multiplication tables by skip counting while she was bouncing). My two spacey guys are much more difficult to keep on task. Sometimes letting them time themselves helps - like how much time it takes to get a set of math problems done. I read a book - think it was called "Smart Moves" - that talked about research & studies showing that our brains learn better when we move. Ironic that the traditional school set up is to have them sit still and to take away recess when they don't get their work done! That would explain why some other techniques for helping hyper kids stay in their place - like giving them a bouncy cusion on their seat or a large ball to sit on - work so well.

I haven't had the chance to inform my ignorance much yet, so forgive me if this is a stupid quesiton, but I was wondering if Lyme &/or any of the co-infections are handled differently by people with "normal" immune systems? Can one develop immunity to any of them after having been exposed?

We bought Cutter's Lemon Eucalyptus (oil of lemon eucalyptus 30%) after a Consumer's Report found it to be virtually as effective as DEET. Unfortunately, I only used it for when the mosquitos were bad - wasn't thinking about ticks because we've never had an obvious problem here. Now that I know more, I am just a little freaked. We live in an area where farmer's fields & subdivisions meet. There is a sizable creek & wetlands not too far from us. We are on a major pathway for migratory birds. We have pretty much everything. Migrating birds can easily import diseased ticks or the diseases for our local ticks to pick up & pass on. There are lots of rodents (mice, rats, rabbits, squirrels, possums, raccoons) keeping the red tail hawk & black vulture populations thriving. We also have deer. Our pets have all passed on & we've been too busy to take on new ones, but our backyard borders 3 neighbors who all have dogs - and just to make sure our yard does not remain untouched, one neighbor keeps 4 or 5 cats who are constantly roaming thru our yard all day long (HOA restrictions are 2 & must be kept indoors, but rules are for everybody else & why be considerate?) I really enjoy gardening & so my entire back fence is covered by a butterfly garden & I have lots of shrubs with berries on the sides to attract the birds - I've been beckoning nature to share our yard for years! Last year I had an aching neck for several weeks after the spring yard work - agh! Now I am wondering if I got bit then. I had ds18 helping with weeding the driveway & sidewalks in the backyard as one of his regular chores. Could that be what caused his already bad tics to reach the level of disability that it has? Or did it sneak up on him before then? Who knows what layer of the multiple infection onion it is? Ignorance may not be bliss, but sometimes I miss it.

HELP! I'm trying to get reimbursed by UHC for our Lyme & Co-infections panels. UHC says there must be a diagnosis code and a procedure code on each bill. On the Lyme Panel, Igenex put a diagnosis code of 300.3 for all 5 tests, but no procedure code. (And am I going to have a problem with all 5 tests having the same dx code? ie. they'll tell me some are duplicates or something?) And for the co-infections, Igenex didn't give me anything at all. (Or do the CPT codes count for anything?) Can someone who has done this before share the diagnosis & procedure codes with me so I don't have to try to chase them down? ~Grace (very much under pressure this morning)

grace -- what are blood freckles? Red colored little spots like small freckles. My 13 yr old (PDD-NOS) used to have it from time to time when he had a meltdown & had been crying real hard so that his face would be red (suffusion of the face with blood). I read somewhere that it is most likely due to some minor leakage of the capillaries in the facial skin which tends to be thinner.

I'm pretty sure that I read somewhere that the Irish are more genetically vulnerable to autoimmune issues because of the potato famine or something along those lines (may have been in a book about epigenetics that I read a few yrs back) Anyway, my kids are mutts, too (isn't it unusual for American kids not to be?). They have German, Scotch, Cherokee, Belgian, Norwegian & Irish ancestry - those are only the parts we know about for sure!

I'm afraid I don't have any answers for you, but perhaps another piece of the puzzle? We have been taking an herb called lomatium. We started taking it for a virus that just wouldn't seem to go away, but I noticed when I was looking at the info on it that it is used for Lyme as well. After ~ a week on it, all 7 of us developed a rash very similar to German measles except that the spots started on the trunk & spread outward whereas rubella starts on the face & neck and spreads down. After the rash cleared, all of us, but ds18 & I in particular, were left with purple splotches that have gradually faded to the point that they look just like the pictures you have posted. DS18 was positive for Lyme but negative for co-infections on the Igenex panel (His Cunningham results put him just below the median for PANDAS range. His main problems are tics triggered by compulsions and an attention deficit/difficulty focusing & remembering). We continued to take the lomatium because it's advised to take it for 2 months, & after about 3 more wks, 4 of us started having signs of the rash again though on a much, much smaller scale - a few patches & a lot of itching. FWIW, I noticed that I seemed to be itching in places that hadn't been noticeably affected the first time. I have also noticed that we are bruising easily & that some of my kids are having "blood freckles" when they cry unusually hard or, as in the case of the last 2 days with a stomach bug, they throw up. It's possible that it is acting as a blood thinner, but the vasculature definitely is being affected in some way by something. Some additional detail - lomatium rash occurs in approx 1 in 200 people, but the woman I talked to at Barlow Herbal said that in autistic kids who use it, about 90% of them react. She said that she had never heard of an entire family reacting to it as we had - and repeats of lomatium rash are even rarer. Which leaves me with a lot to ponder! Does bartonella or lyme or any of these bugs have a life cycle or stage consistent with the timing of our reactions?

We have a fridge shelf full of VSL DS packets covered by insurance! Unfortunately, the packets smell a little, well, pardon the expression but for lack of a better one - barfy. We had to mix it in so much juice to mask the taste that it was impossible - ds is prone to as well as reactive to candida & can't have that much sugar (I don't mean cane sugar - it's natural juice). What are you mixing yours in? Our PANDAS dr told us that he feels Custom Probiotics is better, but it's also a powder & I'm leery of spending more money for something we can't use. DS can take a bunch of capsules if he has to, but the powder form is so much more cost effective - wish I could find a way for him to take it!

Emerson, I'm trying to remember - did you originally test negative for other bugs? My ds18's Igenex tests were negative for all but Lyme - that was bad enough, I hate to think that he might be positive for some of the other crud after all! We're going to travel to an LLMD in LA (we're from the Houston area) - is that the one you're seeing, too? Oh yeah, and when your doc says a basic diet - how basic is he talking about? Whole foods based or like just meat & veggies?

Found this fascinating article last night - Dr. Sapi sounds like she could be the Lyme equivalent of a Dr. Cunningham!

I woke this morning to learn that my ds18 (who has tics & just tested positive for Lyme) began throwing up around 3am and has been sick some 4 or 5 times more since then. Unfortunately, he is sick from both ends & it hit just before he made it to the bathroom. Does anyone have any tips for removing poop from the carpet - at least till we can get a carpet cleaner in here? He has been on zithromax for about 3 weeks now & I am not quite sure how I should handle it. I am about to try to call his dr, but the nurse at his dr's office has always been terrible about returning my phone calls so my expectations there are low. It seems like a virus bug, he just tested negative for clostridia a couple of weeks ago (though we know how unreliable that can be & it was LabCorp who I have little confidence in anyway) and he doesn't get his dose till tonite. Opinions please: if I hear nothing back from his dr, should I try to give it to him or skip it today?

I'm surprised, but my ds is 18 (19 in May) so I guess it wouldn't matter? Was it a long wait to get an appt? Forgive me for the imposition, but would you mind terribly sharing your impressions with me by pm after your appt. when/if you've the time? I read that some drs (don't know if it applies to ILADS members) are using the Marshall Protocol which I am not comfortable with & don't want to try so I would like to have an idea of whose protocol he uses or what it resembles. And while confidence is great in a dr, I also don't want an authoritarian type who resents questions or drops us if we decide we don't want or can't follow him to the letter.

We are looking at an apparently fairly well known LLMD in Louisiana - Dr. F - who also happens to be considered in-network by our insurance (UHC). We've been driving 4&1/2 hrs to Dallas & going to LA would only add another hour to that. It looks do-able! But I would like to know something about him & how he treats before we make this investment - can anyone share any feedback with me? ~Grace

Tami, how long did you have to wait for that first appt?

I wish there was a way to get the info about PITAND out there - esp to the moms who are dealing with autism because those kids seem to be more vulnerable to this stuff - that it is not just strep that can cause neuro problems. It kills me that I heard about PANDAS years ago, but never looked further into it because my ds did not have strep. But my ds had problems with nighttime bedwetting & handwriting issues & all those tell-tale symptoms that would have otherwise clued me in had the info been available to me.

Got the results of our full panel of Lyme tests done by Igenex: Immunofluorescence Assay (IFA) 40 EQUIVOCAL IgM Western Blot 39+, 41+, 83-93 IND [Positive by both Igenex & CDC standards] IgG Western Blot 30+, 31 IND, 34 IND, 41+++, 58+, 83-93 + [Positive by Igenex; Negative by CDC] PCR Serum Genomic - Negative Plasmid - Positive Confirmed by Southern Dot Blot PCR Whole Blood Genomic - Negative Plasmid - Negative Who wants to be first to say 'told you so'? To think we almost didn't bother! So what do I do now? We're in anti-LLMD Texas & the 7 yr journey just to get to this point has exhausted most of our money - we can't afford to go to CT & poor Dr. Jones doesn't sound like he needs anymore cases (besides my ds is turning 19 in 2 mos & Jones is a pedi)! I think my brain is hyper-ventilating over here!!!

Heh - I have trouble remembering what exactly the PANDAS acronym stands for, but at least the acronym itself is easy to remember. I sure hope we're not moving to APMPDCA or worse yet APMaPDiCaA. Medicos are almost as bad as lawyers for their ability to make things more complex instead of simpler!

We tried to go paleo, but I've got to tell you, we have struggled massively. Even without the complications of trying to homeschool 5 kids & running them to the extracurricular stuff (which actually isn't really all that much) while fixing all of our meals from scratch (& trying to come up with a variety that doesn't leave my picky eaters refusing to eat) - when we eat just meats, produce & nuts/seeds, my body keeps telling me that it's wanting for something. I've had enough sugar cravings to be fairly certain that this is something different. I thought it was more healthy fats, because that helps a bit, but maybe it is a specific kind of fat because it just doesn't seem to satisfy. We're doing enzymes that include lipase so I don't think that's it. And then with my ds18's serotonin being low, we had to add some starchy carbs back in - but his ELISA showed him reacting to Candida (in addition to gluten, casein, eggs, citrus & soy). And his endocrine system is so messed up that he has been perpetually hungry from birth. He is only satisfied when his stomach physically feels full so I am assuming that his leptin/ghrelin signaling is messed up (maybe that has something to do with my problem as well). The frustration of trying to figure all this stuff out & make it all work leaves me falling off the diet frequently. We do better when we eat healthy, but we have seen greater benefits since he started exercising by doing taekwondo classes. Ironically, getting him to & from that class makes it harder to fix the healthy meals. I so wish I could figure out how to manage both!

Is Zinser very knowledgeable about PANDAS? Do you know how well he has been following the research? And any chance he does plasmapheresis? [Jen, we have been using Dr. Seshagiri Rao in Plano (outlying suburb just north of Dallas) and he has been both knowledgeable & helpful - we just have the misfortune of being a chronic case with a slow onset rather than an overnight change which has been more difficult to treat, but he has lots of experience with & can definitely help a case such as your dd]

Ugh, dysbiosis. Yeah, we have that, too. I wish I knew how to fix it - we've tried $o much - but I think we're beyond the point of nature's more subtle approach & need more of a bazooka approach. I think I'd better look into the allergy shots. Ugh, again. I hate trying to find a new doctor. You have to go thru so many frogs (& toads, for that matter) to find a prince (or princess) you can work with...

Fixit, so do you think that the allergies are a symptom leading up to PANDAS/PITAND or a contributing cause or a result of? My ds18 has had signs of seasonal allergies since he was an infant, but I honestly don't know for certain when his PITAND problems started because there were some very minor things in his development that were slightly off - I only know that his tics/issues started up around age 4.

Vickie, what natural product are you using? We have tried D-Hist with very little success, but we have always started after the sinus crud wound up so I don't know if that would make a difference. (Actually, I don't know that our allergies have wound down much if at all in the last year or so - there are just some times when the drainage is significantly worse like during oak pollen & grass pollen)

Vickie, what natural product are you using? We have tried D-Hist with very little success, but we have always started after the sinus crud wound up so I don't know if that would make a difference. (Actually, I don't know that our allergies have wound down much if at all in the last year or so - there are just some times when the drainage is significantly worse like during oak pollen & grass pollen)

Got this thing on my google alert for Tourette's - looks more like a press release than anything - but it got me to wondering because tree pollen is starting to gear up here in zone 9 & we're all starting to have sinus issues & ds18 is starting to have problems as if he is getting sick again (ie. we're having an exacerbation of his tics). Now it's too soon to tell if this is just allergies or a new bug going thru the house, but last year his issues flared badly just with allergy season. Got me to wondering if allergies are merely another symptom of this syndrome or could they actually be a PITAND cause?

I am so relieved to learn that I am not the only one with a less than unified team dealing with this nightmare! I get upset with my dh because I have told him the research that I have found & explained what is going on with our ds18, and he will act like he is listening & gets it, but he will still say things about trying to control it & even tease our son cruelly for some of his habits. I can see how much it hurts our son - why can't he? Then I will share some of the things ds tells me with my dh so that he can understand that he is hurting our boy & he will express remorse, but then after a time, falls right back into his old habits. He'll say stupid things like 'why don't you just stop?' Well, duh. Why didn't we think of trying that? He can't join us at our appt's because he watches our other children during those times so I try to take notes & fill him in on everything. But if I didn't volunteer these things, he wouldn't ask. He always cops the excuse that he knows I will tell him whatever he needs to know. I recognize that my dh has been struggling with watching his firstborn falling apart & not being able to do anything to fight it. And he has always dealt with his pain with a dry, sarcastic sort of humor - that and avoidance (don't look & it won't hurt, though it's more like don't think about it & you won't have to deal with it). And this has eaten up virtually everything that he has worked so hard for financially. No father/husband likes to feel so helpless in protecting his family. It's just so hard that I have to be the understanding, empathetic go-between to keep patching up their relationship and there is no one for me when I start to lose it. Well, that's not quite true - you all have been here for me! Thank God for this forum & the internet!