stacestar

thank you all for sharing! I definitely think my sister should get her tested for some things. If she's willing to start with strep, than that's a good place to start and she can take it from there. Like I mentioned my niece, overall feels good, so it's taken my sister awhile to consider figuring out what's going on. It's been probably a year since it all started, the crying spells, etc. I mean. And at first, everyone just thought she was extremely emotional at times. And it's been over a year that she's complained of joint pain here and there. This past spring though when I heard her say things like "I don't know why I'm crying. My body just wants to." I was like, hmm...I've heard that exact line out of the mouth of my son (with lyme) last fall. And, when I babysit her and she says, "aunt Stacey, my foot hurts" as she's limping, and yet she hasn't hurt it, and she said it a couple of weeks earlier too, and before that it was her ankle, or her fingers...yeah, something doesn't seem right. It was at the parent teacher conferences just a couple of weeks ago that really brought it more into the spot light for my sister, b/c the teacher brought up the urinary frequency (something my sister had noticed at home) but now someone else was thinking it was too much too. very interesting Swedo called urinary frequency a hard neuro symptom. I'll look at that link with other info too, thank you. hearing from you all too about not having tics or major OCD right away is helpful to know also. Right now my sister is going to try some dietary changes to see if that helps (personally I don't think that will do it), but she asked me yesterday what would I do if that doesn't seem to help eventually. When I mentioned PANS and strep she seemed open to testing for that. Again not open to testing for lyme, but maybe it's not lyme, and so one thing at a time. She's such a sweet girl, my niece, and although I hate that she may have something to deal with, I'm glad that my sister is wanting to look into it now.

I'm wondering if PANS or PANDAS can happen without motor tics or OCD. I'm thinking maybe yes? It's my 6 year old niece I'm thinking of. Here's what's going on with her: 1. hard to stay focused at school and other times (teacher has mentioned this and my sister has noticed it) 2. falling a bit behind (but not majorly) other students in class (1st grade) 3. a few poorer grades 4. very emotional at times, crying lots, some wailing (but not always); it seems like too much (she has said often "my body just wants to cry and I don't know why) her dad has said during such times "something's wrong. This isn't normal." I've seen it too and it's not. 5. some joint pain now and then, but not often (ankle, hip, fingers) and foot pain 6. urinary frequency So, my son (as some may remember, b/c I've learned lots here for his situation) has lyme and from what I know now/have learned in the past year, I told my sister I think she should have her tested for lyme. My niece and my son are together very often, playing outside all summer long, same parks, our yard, etc. If my son got bit by a tick, it's not unlikely to think that she did too. The red flag for me for lyme seems like the joint pain that moves around, even though it's not always happening, and is less than my son experienced. I think she should have her tested for strep, celiac, and lyme, and, maybe candidas? My sister is open to testing for all but lyme. She gets mad at me when I mention it. To tell the truth, my sister has been right there for me this whole past year and has seen every stress, worry and hardship that lyme has caused (out of town dr.s, no insurance accepted, poor testing, dire symptoms, etc.) , and I think she just doesn't want to go down that road, so won't believe it could be lyme. Also, my son's symptoms got pretty bad, and my nieces (whatever is happening) isn't as bad. She feels good. It's just that things aren't quite "right". It may or may not be lyme. Maybe celiac or strep? Maybe none and it's ADD, like she thinks. But that doesn't explain increased urination and occasional joint pain. Anyway, to my original question, can there be PANS without tics or OCD? I'm thinking yes? I want to tell her to look up a PANS website. They all stress the motor tics and OCD, which she definitely doesn't have. Thanks for any thoughts.

Thank you again everybody for the well-wishes and prayers! We'll take all we can get in this situation! As far as the questions with vaccines, I've had those same thoughts. I've read/heard of cases too, like you're all mentioning, where vaccines can cause such damage, and it is that time of year for the flu shot, and boosters. I would think though that with this enter-virus going around and the fact that so many of these cases seem to have started out as a respiratory infection and then in these rarer cases worsened, progressed, that it does seem like that enterovirus is involved. But who knows what may be the other common denominator is these children that is making, or causing, letting, the virus get to the central nervous system. maybe it is that (entero) plus a vaccine reaction, or maybe it is enterovirus and another infection at the same time? or maybe that idea of enterovirus and pesticide exposures from an earlier link. Whatever it is, to tell you the truth, the more children that are popping up with this, the most concerned I get for all kids in general. At first it was nine in CO, now…more each day. Just read an article about two in St. Louis; there are some in Canada, some everywhere really. Not trying to be alarming or get people afraid, but as parents, it's scary to think there is something out there causing paralysis like this, and we don't really know why. Being pro-active and trying to prevent is the best we can do. Rowing mom sent (on an earlier comment) some links to vitamin C info., and I know so many other's here having been giving good ideas too. praying that my cousin's son can beat this and that it all starts to wane in general and no more children are affected.

hi nicklemama, Yeah, I'm pretty sure they have been in contact with those people. The hospital where he is, I guess has one of the top ten neurologists in the US and my cousin made mention that they noted the similarities in the cases, etc. so I would bet they are doing those things. thanks for thinking of it too. thanks also 911rn. I can't remember exactly or not if transverse mylitis was how they described it or not On a postive note, my cousin has said that he is experiencing some movement in one arm and leg! he is about to start extensive rehab. and they are remaining hopeful there that he may get movement back! they really say, they just don't know, for sure. But we're remaining hopeful too. I think rehab. mixed with some alternative therapy ideas are promising.

llm, thanks for those new ideas. I'm taking note of everything and will pass it all along. At this point, everything needs to be considered. The typical treatments haven't worked. I pray that they are open to alternative ideas. I know as a parent I would be, and I think my cousin will be too. hi rowing mom, thanks for those links. I had seen the first article/blog about a week ago (or less) when I was searching some things online. It's good information (frightening actually), and I learned some ideas too from some of the comments section of it too. I think that's where I read about Dr. Klenner and vitamin C IV therapy, and also someone mentioning that LDN had helped her husband, someone else mentioning to get a good llmd (I think they should, even if not lyme, b/c those dr.s are usually open-minded to alternative treatment ideas, and usually think more broadly than nonllmd's in my opinion. I'll have to read through the other article this evening when I have a little more time. As far as if he's been exposed to pesticides, I suppose so, in the way that we all have, but I don't know if he's experienced any out of the ordinary pesticide exposures or not. But definitely something is different here. definitely. If it was JUST this virus, then why aren't all the children (thousands of them) experiencing paralysis? I pray answers are found. I think my cousin is still going through with the IGenex lyme test. (I'm praying this news of other children doesn't change her mind.) personally, you never know...with as rampant as borrelia is, perhaps there's an underlying tick borne infection and this entero in the mix, and the immune system couldn't handle things anymore. I don't know. all avenues need to be explored for sure. I'll read through those links again. I can't remember what advice they offered in the blog itself. Thank you!

thanks sf_mom for mentioning that idea of hyperbaric therapy. I've heard of it, but am not too familiar with it. I'll definitely pass this info along. Thank you for the link to one that is known to have a good reputation too; that makes it easier to tell her about it, knowing it is well-respected. Thank you! I'm going to give them a call tomorrow and mention this situation. Thanks!

hi llm Yeah, he's had several MRI's on both brain and spinal cord (3-4 of them). I don't remember if my cousin mentioned spots or lesions on the spinal cord, but I do remember for sure that she said there was "swelling" that showed up on the brain and spinal cord (encephalomyelitis). The dr. was thinking that was why he couldn't move limbs. She had said something about the swelling may be blocking nerve responses or something like that. On his second or third MRI there was reduced swelling, and on his last MRI (last one I know about, two weeks ago) there were signs of "regeneration" at the nerves (I think that's how it was put). That was two weeks ago, and he's still not improved. It was after that particular MRI that the dr. told my cousin, she didn't think he may regain use of limbs, which is confusing if there's regeneration happening. The dr.s were talking about "demyelation" and "axonal" nerve damage, and my cousin said they were praying/hoping it wasn't axonal (I don't know the differences) but I never heard which one it was. I read that about the spots on spinal cord too. I'm curious if he has them too.

hi sf_mom thanks for your reply too; I've read about those cases. In fact my cousin's son's dr. had referenced them to them and noted the similarities. What's unusual in his case, compared to the others (CA and I think now these new ones), so the dr. said even, is that the weakness/paralysis is affecting his respiratory system; he had to have a tracheotomy placed yesterday as they prepare him to be mobile for the rehab. dr/center, and he has a feeding tube, since he can't swallow right now; also something the others aren't reporting. it's quite a coincidence that he and others are experiencing limb paralysis after respiratory illness; it does seem connected (since they were in CO in August, but I don't know what city). An article I just read this evening mentioned to not panic, that thousands of children (it said hundred of thousands even) are having this virus and are ok. What is it with the small handful that are experiencing some paralysis? What's the difference? We need that answer. I pray they/we can find that answer. thank you for the ideas of chlamydia pneumonia and mycoplasma. I mentioned to my cousin too, to have him tested for them if not already. She didn't say (through messages) if they had tested for those yet or not. If I were her I'd test for everything under the sun that may cause this. And, I think she's wanting to do that; starting with lyme. As she put it in a message, it's a very confusing, weird, and difficult time, to say the least. thanks again for thoughts and ideas!

thank you llm for you response and ideas. Those are great ideas, about contacting Pam Weintraub (I've read that book and was very impressed!) and the Colorado team. And, definitely I agree about firing that dr.! I mean in one breath, she's said "I don't think he'll get better, prepare for this to be his life", and then in the next breath she's telling my cousin, "I don't know what this is. never seen anything like it. confused, perplexed by it" words and phrases like that. Well, dr. if you're so unsure of what it is, then don't be so sure the outcome won't be good. and, yes, open minded is what we need. I'm familiar with Stephen Buhner's books and lyme protocol, etc. and so asked him on his Facebook page yesterday if herbs can help recovery from paralysis from an enter-virus (if that's what is going on) and he replied (which I loved) and said, they can. He did say "not always, that it can depend on things", but said they also "can help; sometimes completely". So there are options and things to look into; digging deep. Colorado tick-borne infections too to look into. Great ideas! thank you very much!

hi all, I haven't posted here in quite awhile. My son (4) has had lyme, but thankfully, is doing really well, almost symptom free, so I haven't been on the forums as much since maybe spring. Now here I am with a general question about my cousin's son. The question is, I'm wondering if anyone has any ideas about Dr. recommendations, and also, to be honest, just any thoughts in general. I find the more I read and people share, of course the more I learn and a new idea or thought can lead to something that may help. I'll try to keep his situation brief and write it in summary/main point style. -mid August, he began experiencing unusual fatigue. -around August 17th, he gets flu-like symptoms, including respiratory mostly -Aug. 20th- pediatrician diagnoses him with pneumonia; blood work looks good though -two days later, loses movement in his right arm -blood work still normal, they send him home, but to ER that night as it got worse -that night, to Peoria to children's hospital -by the next day, loss of movement in both legs and lung collapsed -he was given steroids too starting the second day; I don't remember if lung collapsed before or after that -they did IVIG, no help really, plasmapheresis, no help really -Dr.s think a virus, but are "confused", have "never seen anything like it" -so, for 4-5 weeks now paralysis in two and a half limbs, yet can move hands and feet. trouble breathing on own, so intubated -also for that time, swallowing muscles so weak, he can't eat. feeding tube in. -CDC lyme test negative. They are testing through Igenex now (this week) just in case. -all other tests negative too. you may have read/heard about the enter virus going around. This has all happened at the same time. Now last night I read that 9 other children are experiencing partial paralysis in limbs in Colorado. 4 of 8 tested were positive for entero virus 68. I am certain they tested my cousin's son for this, and it was negative. but not every test is perfect of course. Also, he and his family were in Colorado in early August, right before he got sick. I still think they should test with Igenex (and again my cousin said they are; PCR urine and Lyme Dot Blot), b/c these could be lyme symptoms. It is suspicious though, of course, that the other Colorado children are experiencing paralysis too. My cousin's son, though, has it affecting his respiratory system too, which I believe the other children do not. I wonder about maybe two infections? what if enter virus and something else. You know, one being the straw that broke the camels back, b/ there was something else at play already, underlying (i.e. lyme, etc.). Don't know. I just wonder, with all of the children being reported as to going to the hospital for this enter-virus (hundreds!) why is this small, very comparatively small number of children experiencing paralysis, and why is my cousin's in his respiratory too? I think a Dr. like Dr. Corson or Dr. Jones, or someone open minded and lyme literate just in case would be good for him. Any thoughts, ideas, stories...they all help. Thank you so much. I feel so desperate to help him. This is so heavy on my heart. I just can't believe that what the Dr.s are saying is right "to prepare that this is his life" being paralyzed. I think it's more than just being hopeful to think he can recover. I think there is truth to it. Thank you for any comments, or ideas. It can all lead to something more perhaps!

thanks ktdommer for your reply. Six months past treatment is the longest I've heard of yet. But I guess that would really make sure you were symptom free then. Our dr. says one month past symptoms, but I can see how that may be harder to know or figure out, since so many things cycle, some by month even sometimes. I do keep pretty good records of my son's symptoms, but I wonder if maybe my llmd would go a little longer, if even by just a little bit. It's also one reason I'm interested in the Buhner, b/c then something could still be treating just in case, even when off the abx. A question for you ktdommer, why the not going off treatment in winter? Is it b/c of flues and virus's going around, and not as much sun for vitamin D (although a person could supplement so maybe not that)? Thanks again.

rowingmom, ok I will! seriously though, I have wanted to look into the herbal option/ideas, and it's true that I think now is a good time. I know my son is on the right track and making good progress and so I want to do the abx for what the llmd recommends (a month past last symptoms), but I also want to read about the more natural route, the herbs; to know options, understand it, and perhaps implement it at some point, to make sure it's all gone, like you said. It's been a one thing at a time thing, and now that I feel comfortable with our dr. and my son's treatment and progress I do want to read them. thanks for the motherly nudge (or kick in the pants).

thanks rowing mom, Our next appt. is still a month away so it wouldn't start until at least then, but I wanted to get some opinions and advice in the meantime, so thank you. If our dr. doesn't mention the pulsing of it, I'll bring it up to her so to go gently. Again, so far so good for my son, but I don't want to upset that, yet definitely want to do what it takes to help him get through this. I still haven't read those Buhner books, but intend to, b/c as my son moves along well, I like the idea of using herbs once the abx are done just to make sure it's all taken care of too. Not that we're done with abx yet I know, but I'm just thinking ahead with that. Thanks rowing mom for sharing you info and experience.

Hi all, so my son is doing really well; he's been on antibiotics now for about 12 weeks (amoxicillin for the first 5 and then amoxicillin and azithromyacin for the last about 7). He symptoms are really tapering off; he's mostly left with occasional stomach aches, rare joint pain (knee) and occasional sore throat. (Stomach aches have been there from the beginning last fall, so I don't think it's just a abx side effect.) Anyway, well, our doctor has proven to be a good one. At first she was hesitant to say it was lyme b/c of negative test, but after running many blood tests, and speaking with a dr. at the Igenex lab, she said she's very comfortable clinically dx my son with lyme, due to classic symptoms and the fact that as she said his blood work looks "remarkable" and since speaking with an Igenex dr. and understanding more why a child may test false negative. Anyway, that's just my update and background info, now to my question: she said she may (or will) put him on Tindamax soon to "clean up anything still there" I understand it's for cyst forms, and I read that it's okay for children. my question is, I've read (from older posts on here) that it caused an increase in PANS symptoms in some children. My ds hasn't (thank you Lord) had any real PANS symptoms for months. He had a blinking motor tic from Oct. 30th until the end of Nov. (but it was virtually gone even by mid-Nov.) and really that's the only ticcing he had. And, he never had any OCD from this all to begin with. (A little obsessive about stickers in Nov., but that ended and hasn't traded itself for a different thing.) and he hasn't had a wetting accident since mid. to late Feb. I'm worried (that's my specialty-worry) that what if Tindamax would God-forbid bring back PANS things. But then I try to calm down and remember that he's doing very well and has tolerated the other abx very well, no major herxing, and also remind myself that he isn't having PANS now; I've read that some children do just fine with the Tindamax. I'm wondering if there are people here whose kids have done fine with Tindamax. I'll express my concerns to the Dr. and I wonder if maybe we started the Tindamax slowly if that would help prevent any bad reaction. I don't want to do anything to mess up the good thing we have going right now. But I want to do what will help him get over this the best. I've read about AL complex. Is that a natural equivalent to Tindamax? if so, does it cause any of the same negative reactions some have experienced. Any other good natural and as effective, cyst busters? This got long, and with several questions. Thanks for any thoughts!

Well, with a little research I think I've found my answer. The Mayo Clinic website has a page with normal ranges for what seems like must be every test. According to them anything < or = 70 is normal. So if I'm understanding it correctly, my son's <13 are within normal range.

I've been on here just a couple of times before, and thanks to all who have chimed in with info to my other questions. Now I'm wondering about strep titers. In a nutshell: my son, who is four, has been clinically dx with lyme by an llmd new doctor also wanted to check his strep titers from what I understand often in lyme patients they are high. I saw an online interview with Dr. C from MO, who treats lyme, and he said that 48% of his lyme patients have high strep titers, antibodies (however you would say it. This is all on the new side to me.) Anyway, the doctor emailed my son's lab results to me, but the nurse said the doctor will go over the results with me next Thursday at our appt. I can make sense of most of the results on the test, but not the strep So next to the ASO it says "results" and my son's results are <13 next to results it says "Reference Range- units" and under that it says <100 IU/ml I have no idea. That sounds low to me? but I don't know anything about the levels, etc, so maybe it's not. Any ideas from anyone? Thanks!

Hi, My son is currently being treated for lyme . Some may remember a couple of other posts I put up about this; as of now the dr. has not ruled out lyme, and so is continuing to treat for it and possible Bartonella. He had been on only amoxicillin from a previous lyme literate Dr., but this new dr. added azithromycin for him also. (She said to provent antibiotics resistance, and to treat Bartonella if it's there). Overall he's been on amoxicillin for about 8 weeks and azithromycin for almost 3 weeks. He's been tolerating them well, and is making great improvements. So much improvements that he's mostly just left with stomach aches and occasional headaches (although not for about a week with that) and some sore throats. His joint pain and muscle pain, dizziness, and fatigue even are so minimal, to the point of some of these not being around for almost a month now. I feel like the new Rx of upped amoxi. and added azithromycin is making a difference. But, now, here's my question: I've recently read that Dr. Burrascano said not to use azithromycin in "young children" (my son is 4) anyone know why not? and, I've read the FDA warning that came out about a year ago saying that azithromycin may cause dangerous heart rhythms in some people. I've read that it's rare, but I have to say I'm scared of the azithromycin now! I'm going to call the dr. tomorrow and run my thoughts be her, but she's the one who prescribed it in the first place, so it obviously means she thinks the risks are low and it's okay, but I still want to ask about it. I thought I'd ask here though for any thoughts. Anyone have young children who have been on azithromycin for long periods of time? Thank you so much for any thoughts!

also just wanted to add, both Dr. McF and Dr. Y take children; I know b/c I made an appt with Dr. McF originally (it was about 2-3 months out) but of course cancelled it and stayed in town instead. And, Dr. Y, b/c I called to ask about an appt., and they said she does see children. (my son's four years old) Also, Dr. Y takes some insurance; can't remember which ones off the top of my head.

I don't live in Southern CA now, but I did, and my husband, son and I spent last winter (a year ago) and plan to spend next winter there. Anyway, all that to explain why I know of a couple of Dr.s from the San Diego area, b/c once my son started looking like he had lyme last fall, I considered taking our family out there for awhile to see someone (have in the meantime decided to see a Dr. here in the midwest.) The Dr.s I've heard of, and that are supposed to be pretty good, are: (since I don't know if I'm supposed to say their names, I'll just use initials, and cities, but with google searches these dr.s are into lyme enough that you can find their names. One has written two books (McF), and one has been on the question answer panel at the ILADS conference in San Diego in the past year or so and is a mentor of Dr. McF): - Dr. N. McF. an ND in San Diego (maybe specifically La Jolla I think; treating lyme for 12 years) - Dr. T. Y in Santee, CA (treating lyme for 20-30 years, can't remember which) I hope you find just the right doctor for your son. Oh, and I just reread your post, and saw again the Autism part. Dr. N. McF has worked with many children with autism and lyme. In fact I heard in an interview she gave, which is on youtube, that she started out treating autistic children mostly and now has more lyme, yet still autistic patients too. She is a Naturopathic Dr., but states she uses antibiotics too in her treatment of lyme. You can listen to her interview online; she sounds well informed and experienced, and again Dr. Y in Santee is her mentor.

hi ktdommer, thanks for your thoughts. I haven't been on this site for a few days or I would have replied to your question sooner. As far as might he have congenital lyme? That's actually something I've wondered about myself, here's why: -although I'm sure it's very rare to have a lyme infection and not have physical pain or fatigue symptoms, I have heard (in a radio interview online with Dr. Stephen H. from CA, and read elsewhere) that it is possible for reasons unknown. -and, although it may not be related, I do remember having a tick embedded in my leg at around 10 years old or so. and, I don't remember if these were close together time wise, but sometime near after that tick I developed sudden OCD. now maybe these two aren't related, maybe my OCD wasn't a PANS reaction, or if it was, maybe it was to a different infection. I don't remember any anxiety or other typical PANS symptoms, but I do know that the OCD came out of no where and was sudden. it's faded out a bit now as an adult, or at least has changed, to now more anxiousness and checking; it's mild I know compared to what some experience. only other things I notice on the symptom list are floaters in my eyes, dark circles under eyes, low blood pressure, and creaky (rice-crispie sounding) neck, which I'm sure can come from other things of course. Other than those things, I feel no pains, no headaches, no fatigue,…basically nothing physical, but I guess stranger things have happened. Who knows? He is on antibiotics now; has been for 6+ weeks, and the new Dr. mentioned retesting now that he's been on abx for awhile. To be honest, I kind of resist that idea, b/c of the expense, and b/c I feel like if she could consult with a lyme literate dr. who treats children and discuss my son's test with him/her that maybe she could decide based on that test and his symptoms that he has lyme, since two other dr.s did. There are some reasons I don't want to go to the first llmd and to save time I'll leave it at that, but I do agree with her lyme dx the more I think about it. The fact my son had 39 IND makes me believe his lyme symptoms are due to lyme; to me everything I read says that 39 is lyme specific. Someone once told me that band 39 being lyme specific is "debated", but I cannot find anything that says that anywhere. Maybe it is from me? I don't know. I mentioned this briefly to the dr. and she acknowledged that could be the case, but said it was more likely that if has lyme that it was from a tick on him. She doesn't know. I don't know. Thanks for that idea though, b/c it would explain the test result probably. That or a co-infection, which I'm debating getting him tested for; the expense!

thanks everyone for your thoughts and ideas. The first llmd didn't test for anything else. Our newer llmd was surprised by this (so maybe that's a good sign) and is having the following blood tests done: for celiac, for rheumatoid arthritis, strep titers, vitamin D levels, CBC, and I think that's it. To be fair to her, she did mention that since my son had foot pain we could test for Bartonella if I wanted, but she said it would be useful to do so to, "confirm lyme dx", but my issue is I hear from people, from other Dr.s (first llmd, an ID Dr. our pediatrician consulted with, from an article with a quote from Dr. C in MO, etc.) that a 41 ++ and 39 IND, along with lyme symptoms should be enough to say "this looks like lyme, let's treat for lyme". What she said was "I don't know that your son does have lyme, b/c I would think he would have more +'s in other bands, since he's a child with a robust immune system". She basically said, it could be lyme, but she's not convinced. Yet, like I said, other llmd's with more experience than her seem to be convinced. She's still treating him now for lyme, and even told me that strep and celiac, etc. don't rule out lyme, but it is good to know what all is going on. I can agree to that. Question: Do you think she would be offended if I asked her to consult with a lyme literate dr. who has experience treating lyme in children, regarding understanding that children can have false negatives, and don't have to light up their western blot to have a lyme infection? (someone on another site has an llmd with years of experience treating children and he dx her daughter with only symptoms and band 41+. I wonder if she could consult with such a dr.) Thanks for the input! oh and to answer where are the headaches? since it's not me, but him, I can't say it's always or only here, but he's told me before "forehead" when I ask where it hurts, and I've seen him hold his forehead when he is pain with a headache. neck pain? not sure, but he holds the back of it when he says it hurts sometimes.

I have another longer post that may come up before this one. I'd love any advice to either. My other one is longer so I'll keep this one shorter, with just on e question: if a child (maybe mine) had strep that induced PANDAS (and it was mild), anyway, would that strep infection cause physical symptoms that mimic lyme disease? new llmd is questioning the lyme dx given my son about a month and half ago. based on his Igenex IgM 41 IND IgG 41 ++, and 39 IND all other negative she's thinking strep but he has so many physical symptoms of lyme fatigue, migrating joint pain, muscle pain, dark circles under eyes, headaches, stomach aches, dizziness, tingly hands and feet, weak muscles, hurting all over, not feeling "good", sore throat, heart palpitation, gasp breath thing, neck pain, and foot pain (soles) anxiety at times can strep cause all of this too? Thanks for any info!

Hi, I'm new here, but am familiar with the site, b/c of reading much info. last fall. I'll try to keep my question shorter, so it's not too time consuming. In a nutshell, here's my situation: my son (4), has/had PANS and lyme symptoms starting last fall (Oct. mostly) long story short, is it looks a whole lot like lyme. so we did Igenex Western Blot, end of Dec. his test was like this: IgM all negative, except band 41 IND IgG all negative, except band 39 IND and 41 ++ so llmd said, let's treat for lyme even our pediatrician and ID dr. he referred to (my husband wanted a 2nd opinion) said "definitely treat for lyme" so he started amoxicillin beginning of Feb. (been on them 5 weeks now) and he's showed some improvements. fast forward to today, we had an appt. with a new llmd (I wanted a new one, b/c the other was only prescribing amoxi, and not checking liver, candida, etc.) anyway, she said today, something which has confused the heck out of me, and is causing me anxiety. she said, she's not sure he has lyme. She thinks his Igenex test would have shown more positive bands, b/c he's a child with a "robust" immune system. Even though 39 was IND, which I read was to be read as a weak positive on a lyme specific band. She wants to test for a strep infection. Basically b/c his tongue has the strawberry dots on it and his lyme test wasn't very reactive. Here's my frustration, I want a dr. who can recognize lyme and not go by tests alone. I've read the reasons for why it could be a negative lyme test when really it's there. his symptoms are these, in the order I noticed them as of last fall: sole of foot pain stomach ache, fatigue "don't feel good" blinking motor tic (which has stopped as of mid-Dec.) migrating joint pain muscle pain overall not feeling well sore neck headaches weak legs tired legs tingling in hand and legs and feet dark circles under eyes red outer ears bumpy rash on arms and cheeks urinary incontinence, which has gotten better, none lately that's it mostly oh, more easily irritated sometimes, but better than it was in the fall Any thoughts? my questions are: -has anyone heard that band 39 isn't lyme specific? -do these symptoms sound like strep" or more like lyme? help?! I'm just so confused. This is our second dr. (first was farther away and again I wasn't so happy with her treatment protocol) my husband thinks this is all hogwash to begin with, and if I change dr. again, he will think I some weird disorder, that I'm trying to make a dr. say my kid has lyme. I'm kind of down about this right now. Thanks for any thoughts, and so much for keeping it short!