pr40

my wife saw LLMD yesterday and dr told her that she had never seen the case in her practice of sexual transmission of lyme. She, however, cited some cases she read about, including a sperm donor transmission of lyme. Just to let you know

thanks, SF mom. I hope others answer too. Our experience is very similar to yours except that I (husband) haven't been tested yet. I assume that your kids have lyme too.

I did some googling of the issue and found both sides. Can you confirm either way -- it is transmitted OR it is NOT transmitted -- based on your experience?

symptoms you describe are also consistent with lyme and other underlying infections like myco. may want to do western blot with Igenex to rule lyme out. myco can be ruled out through regular blood labs. Our kids had similar symptoms and it turned out that they both have lyme probably congenital.

I would assume that these tests are not all that precise. Second, what matters is the trend. trend is down.

if he is on many supplements, they or their dosage may be in part responsible for the symptoms. when our kids overdose, their main symptom is laughing. we then stop supplements for a few days and start again with smaller doses.

it is hard to give you an advice when it is not clear what you tried already, what condition your kid is in at the moment, and so on. A signature line with a brief history would be helpful as would other details. also, can you be specific about the problem? uncooperative? too many tantrums?

how about dr Leckman at Yale? there should be a hospital there as well.

Why stop with strep test? myco, lyme, anything else you may suspect. with our ds, we had it back and forth and thought always it was a phase. and, indeed, he would get out of it until he did not. it's a tough call.

I am doing research on lyme and found this about inositol which I did not see mentioned on the forum. Perhaps I missed it. Info is from Wikipedia. we haven't tried it ourselves. If you had experience, could you comment, please? Some preliminary results of studies on high-dose inositol supplements show promising results for people suffering from problems such as bulimia, panic disorder, obsessive-compulsive disorder (OCD), agoraphobia, and unipolar and bipolar depression.[20][21] In a single double-blind study on 13 patients, myo-inositol (18 grams daily) has been found to reduce the symptoms of OCD significantly, with effectiveness equal to SSRIs and virtually without side-effects.[22] In a double-blind, controlled trial, myo-inositol (18 grams daily) was superior to fluvoxamine for decreasing the number of panic attacks and other side-effects.[20] A double-blind, placebo-controlled study of depressed patients showed that a high dose of inositol (12 grams daily) resulted in significant improvement of symptoms, with no changes noted in liver, kidney, or hematological function.[21] A meta-analysis of randomized trials of inositol for depression was not able to determine if inositol is of benefit.[23] Older research suggests that lithium functions primarily by decreasing myo-inositol concentrations in bipolar patients; however the conclusions of this research are unsupported and have been questioned.[24][25] Other studies suggest that lithium treatment may further inhibit the enzyme inositol monophosphatase, leading to higher intracellular levels of inositol triphosphate,[26] an effect that was enhanced further by administration of an inositol triphosphate reuptake inhibitor.

think of it this way, you are lucky. there is a good chance that your kid will not born with lyme. and if he/she is, you'll know to treat early.

i am skeptical about all the behavioral techniques when our kids are in exacerbation. we do try to enforce them just as you do. so, perhaps this: change expectations. bad language is probably a compulsion. while we have to say it should not be used, we cannot at the same time expect the results to be great at CERTAIN times. but, then, there is a larger issue of getting him beyond exacerbation. that, in our case, solves most behavioral problems.

we have the same combinations for parents and kids.

finally! this will be a very useful tool for us. you will be able to show some facts about other cases to your PCPs. I urge everyone to do this survey.

I am responding here to coltonsmom, indirectly to the original post as well there is neither a positive proof nor cure for PANDAS/PANS. best you can do is learn about it, start treating and see if treatment helps. If it does, that would be an indirect confirmation that PANDAS is a right diagnosis. For instance, if symptoms lessen with ibuprofen, it is likely that inflammation is among the causes. It is similar with steroids and IVIG. Abx have a different role of helping organism fight bacteria like strep. many here also need to learn about methylation and detox as that process seems to be a part of the problem as well, especially if there are other autoimmune issues. Also, think about PANDAS this way: what other diagnosis could explain your kids symptoms? (I am taking his tests into account.)

what you are describing sound like PANDAS, indeed. we found all doctors entirely useless except PANDAS drs. so, call the closest one and get yourself on a waiting list. NIH is doing a study and may be looking for new cases. Otherwise, if you researched this forum you know what the suggested treatment is, 1) abx (steorids, IVIG), ibprofen 2) determine the cause if not strep 3) see if there are other auto-immune issues or sensitivities do post your original question on the PANDAS forum. you'll get more people to see it and respond to it that way best of luck

also, do lyme test (western blot) with Igenex. in our case, lyme seems to be underlying pandas symptoms. steroid taper, abx, and/or IVIG might be helpful in addition to what you are already doing for methylation. so, get to be seen by a PANDAS dr. I am not sure who is closest to Atlanta.

both of our kids are on a combo abx, augmentin and zytromax. dd9 takes 500-125mg Amoxiciclyn (sp?) x 2 and azitromaycin 250mg x 1. she has 62 pounds. she is taking the combo since December, amox since Sept last year. we expect she'll be on abx for a while

our dd9 presented with very similar symptoms except that she had strep 2 months prior. we also discovered lyme but not until a year later. she has been on, now, 9 months of abx and she is gradually improving. as previous post, i would expect that your dd may need a longer course of abx and perhaps a combo of come kind. PANDAL would be PANS, right? Has she improved after you started abx?

do blood work search of the forum. several lists should come up.

i can only report our experience: we haven't had any issues w or w/out food.

crunchfly -- our dd's rls is (i am don't want to say was) with similar symptoms except that she also feels it when she lies down. we would move her legs until she fell asleep. she would then sleep whole night with some twitching and jerking. when we stopped dairy, RLS disappared too. We saw it come back only twice, on two occasions when we tried NAC.

yours is a touching story. Zoloft is probably dealing only with your symptoms, not with the underlying problems. You may want to do PANDAS A B C and may want to find someone to help you through, a parent, a sibling or a friend. A) extensive blood work -- someone had posted results of extensive blood work the other day, see what was done. all immune panels, vitamin and mineral deficiencies, lyme and coinfections, e tc. detox -- including methylation, food sensitivity, possible mold, and so on. C) therapy -- most of kids are in some kind of therapy. from what you describe you need someone to help you sort out your feelings, adjust your expectations, and so on. It may seem overwhelming but I don't know of any other path that might help you improve best of luck

here is one thing about movement disorders we experienced. dd had restless leg syndrome which was her first post-strep symptom. it disappeared when she stopped dairy. she is not allergic to dairy. she is also on a gluten free diet though she does not have celiac. I don't know how to explain the connection btw RLS and dairy.

perhaps I did not read carefully enough but I did not see tests for any other possible bacterial cause like lyme, myco, etc. did you do those tests?