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stacestar last won the day on February 24 2017

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  1. If I could get opinions on a situation that I think really sounds like PANDAS but would like feedback about. My niece, has got strep 3-4x in two years. This last time (about 4-5 weeks ago) she got extreme anxiety right at the end of the infection. After 10 days abx her stomach hurt, so a clinic Dr said she needs more abx and prescribed more. After 5 days sister took niece to the pediatrician Bc her stomach still hurting. All the while, bad anxiety episodes. Pediatrician said-don't need the 2nd abx, stop them. Said anxiety and stomach pain will go away on own. 😡😡😡 Meanwhile, my little niece (9) is having abnormal anxiety OCD style. Crying often, afraid of being sick, asking her mom if she's going to go to the hospital, get diabetes, etc (irrational fears), hitting her head repeatedly with her hand, flailing her arms while crying, panicking, etc. Although she sometimes could be a little worrier before this, really this was sudden and through the roof with the strep. Also her sister has had on and off stomach pains for 3 weeks. I think they both probably still have strep! Their pediatrician isn't PANDAS knowledgeable. 🙁 Doesn't this sound PANDAS? Any advice I can pass on? My son's issue has been Lyme and after three years treatment he is basically over it, and bc he never dealt with strep I don't know all the details to help her with. Many ideas are interchangeable with Lyme PANS and strep PANDAS I know, but... I want to help her so badly. I hate these issues.
  2. Thank you guys for your replies. My sister said niece's anxiety was very bad tonight. 🙁 I told her it would be good to ask for these tests and ask for more antibiotics. I wish her pediatrician knew more about this all. Every pediatrician should! With as many children that go through this that there are... every pediatrician needs to be educated! My sister needs to find a PANDAS/PANS Dr. but right now I don't know if she's ready to do that (distance). She'll do anything, but is trying avenues here closer first.
  3. Hello! I haven't been around for quite awhile, but have a question regarding strep. My son's issues have been Lyme and co infections, so I'm not as informed on strep. My niece had strep throat last month and since then is having extreme anxiety, OCD type. To me it seems classic PANDAS. My sister is open to the idea that this could be the case. Since she just had strep last month though, the titer tests will all be high still right? Not showing if this is what's bothering her? We don't have a PANDAS Dr in town, so my sister was hoping pediatrician could run some tests. But is it too soon to test with ASO Titer test? How can they determine if strep is triggering the anxiety? Also, niece keeps saying her sides hurt and her sister is having bad stomach pains on and off for weeks. Both have been on 10 days abx for strep,yet still all this is happening. Advice if anyone has any, please, thank you!
  4. thank you guys for your replies and ideas! kmacdonald34, that is wonderful your daughter is symptom free! My son is getting there, and normally I'm pretty positive about the situation, but this accident thing is getting to me, for his sake. I do believe it will eventually stop, just have to figure it out. We have an llmd appt. soon and I'll be mentioning it to her too for ideas. llm, I've wondered too about if there's particular herb that is messing with the bladder somehow. Then I think about how, well, this was a symptom before any treatment, and so tend to think it's more the herbs messing with the lyme/bart. On antibiotics it didn't happen, at least not like lately, but I'm not wanting to do the antibiotics for lyme or bart again (although they helped and I'm glad he was on them for that time). I've thought, maybe if I scale them down even more? or another idea is to switch protocols? Like to do Buhner instead of Beyond Balance. Beyond Balance uses a combination of herbs in the same drops, and it uses about 4-5 herbs for lyme and then for bart. too. I've thought maybe if he was on less herbs and given one at a time, maybe that would help? but I'm not sure. I may try that eventually. and emst, I've wondered about parasites too. I keep reading that most people with lyme often have issues with parasites; I almost don't even know why I suspect parasites with this, but I kind of do. We're having him tested soon, although I've heard the testing is not very good. Even if negative, I think I want to do at least an herbal parasite tx at some point. thank you for the info on the Boiron homeopathy too, I will look into that. The only homeopathy I've ever given him was this past spring, when his ear was hurting (while he had the flu) and I gave a homeopathic ear drop. It worked! very well in fact, stopping the pain. Makes me want to try the bladder one, knowing he had success with another homeopathic remedy. thank you. jan251 thank you for the magnesium advice and D-mannose. I've never heard of the latter one, will look it up. Now that you mention magnesium I remember I read something about that helping this issue somewhere else. That one seems easy enough to try too. I have some mag powder here already. It's the Natural Calm. The health food store lady said it's safe for a child his age, so I think I'll give that a try starting tomorrow. And, I agree, the urinary issues are mysterious. I believe it's probably not just one thing, but maybe mostly one thing that tips the scales, and if I can help in that main way, or in several other ways, than hopefully this can stop sooner than later. Thank you also you guys for just sharing at all, b/c to know that my little guy isn't the only this happens to is reassuring. I don't want anyone to go through it of course, but in the way that knowing you're not alone helps, that's what I mean.
  5. my son had sudden urinary accidents back in the fall of 2013 before dx and treatment started for lyme (and bart.). They went away with his antibiotic treatment. Then, at about 90%+ symptom free we switched to herbs (2 drops 2x/day) this past fall and the accidents started again. Winter and spring I backed way down on the herbs (other herxing reasons). We upped the herbs (still not high dose) to 1-2 drops 2x/day since April, and now, especially the past month, the accidents are back. He will just suddenly pee. He cannot feel it coming. He'll be standing, or in mid-step and...woosh, pee just comes out. He's 5, and potty trained for over 2 years. I definitely see them happening in relationship to the herbs. Today he had 3 of these accidents. Usually it's more like 4 a week, with only 1 on any given day, since the increase in the herbs. When searching for ideas, I read someone say regarding a similar situation, that perhaps it was miscommunication, basal ganglia, etc. or something. From what I read lyme and bart. can affect the bladder and cause miscommunication with bladder signals. I'll bring it up to his llmd, but am wondering if anyone has had similar experiences? Or ideas of how to help if you have had this symptom. Maybe I'm still not doing enough to detox. I've been meaning to order either Pinella, Parsley, Burber or glutathione, but haven't yet. (oh, I did read about if maybe a UTI, but he had the accidents prior to treatment, and in the fall with herbs and now with the herbs again. I would think not a UTI, especially when lyme and bart are known to cause bladder issues anyway. Also, there's not an urgency to go. In fact, just the opposite. He doesn't feel the need to when it happens. Most of the time he goes normally without problems still, but even a little of this is too much.) and one more note, he's on abx right now, b/c he had a rash that was suspicious of being an EM rash, so llmd put him on amoxicillin last weekend.)
  6. a long one! how does strep in the gut work? My son (w/lyme and bart.) has been having stomach aches, about every day, since mid April. Now, of course lyme and bart. can cause stomach pain (esp. bart, I know), and stomach aches were one of his main symptoms (well, he had so many) when first diagnosed last year, but they had really decreased with treatment, so, so much in the past year. To the point where he might mention a stomach ache maybe 2-4 days a month is all (for several months). Now, it's every day. He doesn't even want to eat or play sometimes (that's not often, but happening.) One reasonable explanation could be we've been increasing, very slowly, his bartonella herbs since end of April. So, that's probably it, maybe? probably? But, I chart his symptoms religiously and I noticed the stomach aches, almost daily ones, started 4-5 days after we got an email from the school nurse giving pre K parents a head's up that strep was going through the class, with non-typical symptoms. Not sore throats, but stomach aches, and low fevers. And these particular stomach aches of his were right BEFORE a bart. herbs start/increase, starting with 4-5 days in a row, and hardly letting up since. Hmm… Again we started the bartonella herbs within one week of those first daily stomach aches of his in April. I've been thinking all along it's bart., herxing; bart. causing stomach pains,…and it probably is bart, but the timing bothers me. I'm going to ask the llmd to test him for strep. my question (finally, if you've made it this far): Can strep induced stomach aches last 7+ weeks? maybe a combination of bacteria? maybe I'm grasping at straws, and it's obviously bart. who knows. I was going to stop the bart. herbs to see if the stomach aches subsided, but with a possible new tick bite last week, he's on abx now for a time, and I don't want to stop the bart. herbs just in case. Thanks if you have any advice or thoughts. I know no one can say for sure, but I was wondering how long strep can cause stomach pain, and how long are the treatments when that is a culprit? oh, and my son's strep tests all came back very low and normal last year when he was being dx with lyme, and llmd wanted to look at the big picture. So he hasn't had issues with it before.
  7. thanks kmacdonald34 for your reply. I think that makes sense too. The good news is he hasn't ticced with blinking this time (or with anything else) and I'm going to think positive that he won't start. The heavy, blinky "feeling" obviously isn't normal (even if not ticcing) and must be being caused by something of course. perhaps it is pollen? perhaps infection; I don't know. so much involved in the body.
  8. I keep adding (trying to answer ) my own post. But just to add that he isn't actually ticcing now, just he says they "feel" heavy and like blinking, and I saw him squinting not blink ticcing. Anyway, just thought I'd add that.
  9. a few moms on another site that I asked about this too, said maybe the eyes might be related to histamines from seasonal allergies. That's something for me to look into. The two other times ticcing started for him was Oct. 2013, and then one year later Oct. 2014. I do really think other things were involved (lyme, yeast most likely), but perhaps for him seasonal allergies are playing a part too, and tipping the scale? hmm.
  10. looking for opinions, thanks! my son (5 years old) hasn't had any lyme symptoms for 6 weeks! (Thank God!) Prior to these 6 weeks, he'd been doing really well too, with just minor joint pain about 4-5 days/month is all (for several months). (he was dx and started tx for lyme last winter, Feb. 2014) So, as the weeks go on with no symptoms, I've been holding my breath, and hoping/praying for the best. This morning though he told me that his eyes are bothering him, wanting to blink heavy. He's had blinking and other tics off an on in the past (last time was Oct.-Dec. this last year, but nothing since then. And, also this morning he told me his tummy hurt. Strep was going around his class last week. The health aide at school emailed all the preK parents saying, strep was in the class and not with typical symptoms, but with tummy aches and mild sore throats. In 2014, he had labs done and his strep titers were very low, very normal. So, strep wasn't contributing to symptoms last year, when he was very symptomatic, but maybe now after last week at school? here's my question: since he hasn't had any lyme symptoms for 6 weeks (and they were joint pain) and since strep was in his class (exposure to symptoms time is 2-5 days, which fits) do you think the eyes bothering him/blinking, and the tummy ache are strep? or lyme? I guess time will tell. oh, also: I think his ticcing in the past was also yeast related, and I've been slacking off on our anti-yeast diet and lots of coconut, etc. Who knows really. But if you have any thoughts, I'm interested in hearing them! Thanks so much!
  11. thanks for the reply Jan251. maybe that does have something to do with it. hmm. and hi rowingmom! thank you for your reply too. I do think the screaming comes with a "have to", premonitory feeling, since he tells me ahead of time. I've read about dystonic tics having that feeling, so maybe it's that kind of a thing. But again, it's so random and rare (thank God) that that is why I question if it is a tic. hmm, confusing, and maybe it doesn't matter that much as long I keep on track with the treatment and detoxing, nutrition, etc. Partly it's curiosity on my part, wanting to understand it, but wondering too if in understanding it better it could be treated better (more exact?) he woke up this morning with ankle pain, and a tummy ache. The tummy aches lately are only a couple a month (if that) but the joint pain is still at about 1-2 days every two to three weeks, (often with the full moon or the new moon it seems) so the fact that he had scream urges last night, and ankle pain this morning, and tummy ache. I think they're all going together as a lyme symptom (or Bartonella?) flare. I may need to increase his herbs; I've been giving him very low doses for the past month. rowingmom, remember the ticcing that I mentioned he was having last fall and winter? well, it lasted from mid-Oct. to early Jan., almost every day. Waxing and waning, almost gone some days, then full blown others. Finally in early January it stopped and he's tic free now. anyway, that's one reason I slowed way down on the herbs. his joint pain and other symptoms never increased through all that though. the llmd wants to test him for bartonella, babesia and bio-films. I asked if we could just start the bartonella Beyond Balance herbs without the test (to save the money) and she said that was ok, so we're doing that as soon as they arrive in the mail any day. as far as Babesia…we may test sooner than later, but I want to start the bartonella herbs first. Maybe I'm dragging this out for him, I don't know. The llmd is kind, but she said something like "we don't want this to take 5 years for him" at our last appt.. (well, of course I don't either if it doesn't have to, but it can take time and I don't want to rush and cause bad herxing.) She wants to pinpoint the infections and treat. I agree with that and treating the infections there, but to spend $600. on tests that aren't accurate, well, I can't afford that right now. I could sense she was a little in disagreement about going so slowly with the herbs (I don't even give him a full drop a day yet), and she may be right, maybe I should up them faster, but I got burned last fall when I did up them and he started the ticcing that lasted three months. That was a hard time and it's made me overly cautious. overall he is feeling good. He'll go 10-20 days in a row lately with no symptoms and his energy is great. But, it's still not done. I want it done, of course we all do. Adding the bart herbs makes me nervous... you know, upsetting the apple cart. But it needs to happen, and we'll do it. got long here. Thanks rowing mom for wondering how he's been doing and for your advice and thoughts as always, and thanks jan521 and anyone else!
  12. my son (5 and close to symptom free with lyme) had two screaming urges tonight. This happened last month a few times. It doesn't happen a lot, but it seems like recently a few times a month. It's just one or two screams max on the few days a month it happens. He's on herbs, going slowly. Here's my question: do you think this a lyme symptom, cycling, (b/c it might be cycling). He's so much better now anyway, symptoms few and far between lately. or is it a tic? it doesn't seem like a tic necessarily, b/c when he's ticced with other things (blinking, sniffing, lip movements) it was pretty consistent and often. With the scream thing, he'll go a few weeks (or more even) and not mention it or do it, and it's not repetitive. Tonight he said, "mommy, I just have to scream. My body has to." Then he screamed. Then a few minutes later he looked at me again and said, "mommy, I'm not mad at you or anything, but I'm going to scream, but I'm not mad at you. I just have to, my body has to." Then he screamed loudly again. I just gave him a big hug. It made me so sad. Then nothing the rest of the evening (thank God). I looked at my symptom chart for him and the last time I noted this was Feb. 8th, about a month ago (unless there have been a couple I missed). I have seen "urge to scream" on a lyme symptom list. I wonder, is it lyme (or confection), or PANS caused by lyme? Is it fighting the infection that helps, or detoxing, or yeast, or all of the above? thanks for any ideas.
  13. just want to chime in and offer encouragement too. Stay connected with forums like this for support and information. I've learned (am learning) so much her myself. My son is dealing with lyme, and so his stuff has been a lyme triggered PANS situation. I remember when my son first had a sudden onset blinking motor tic last year. I can relate to sriramcs post about feeling so upset and loosing sleep. I remember last year when the tic started I just wanted to back time up. It was so sudden, like the name says "sudden onset". There were no other signs or warnings (well, that I recognized then). It started on a Wed. and I remember thinking for days, I just wanted to go back to that Tuesday. And wondering what had happened, what in the world was going on. Then you dig and dig and research and find a good dr. and support and learn, and realize that it can get better. My little guy is just about 99% symptom free and doing really well overall, feeling good. He stopped ticcing last year after 6 weeks; he did unfortunately start again this past fall and it still hasn't resolved 100%, but it is usually minor and I believe full heartedly that it will go away as we work through the triggers (we're detoxing, combating yeast, and infections). This isn't easy to see the ones you love the most go through these things, but hang in there! There are answers and there is another side to this; I believe it!
  14. thanks worrieddadandmom and valsmom for the replies. I've yet to try the curcumin I did buy (Terry Naturals), b/c to tell the truth, I worry now about everything I give him, that it might cause a flare I mean, but I know that I have to try new things, like the curcumin, so I think I will tomorrow. The ticcing still hasn't 100% resolved. It's gotten a lot, lot less since a Christmas (that week was bad). It's very frustrating and disheartening to not see it gone yet. But keep trying we will until it's gone. thanks valsmom for that idea. Does that mean the anti-inflammatories won't get rid of all ticcing though? I guess really of course the goal is to get what is causing the inflammation (the root), and then the inflammation won't happen.
  15. thanks guys. I've heard good things about enhansa. I may order some, or the meriva curcumin which I've heard good things about too. Neither are available in stores here so I got a Terry Naturals product called Curamed, with Curcumin BCM 95. Maybe that will help until I can get an order from online. I do have to add a big thank goodness, that the tics have settled down again today (starting yesterday, but especially today). from the 23rd-27th they were off the charts for him. It was hard to see. My theory is: yeast and lyme die-off again. He's been doing herbs for lyme and we go SLOWLY or he herxes badly. Anyway, he had a dumb ear infection a couple of weeks ago and was on amoxicillin for ten days. During those ten days there were holiday parties with sugar and bad foods too. I think the amoxicillin increased yeast (and got some lyme probably too). The last three days we've focused on detox and no more bad food (cookies, cakes, candies that he had at Christmas time; back to our anti-yeast diet). I've given him spoonful after spoonful of coconut oil, chlorella, clay baths, and lots of water. I think this is what's helped, b/c the tics have really decreased today (a bit yesterday too). I'm going to try the curcumin today too. thanks again!
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