EmersonAilidh

UUUGGGGHHHH my post erased. Here we go again... EAMom - Just found out that my ASO was only thirtyeight as well. Third low titer ever. Go me. He seemed pretty adamantly against titers being viewed as diagnostic, as well as the P.A.N.D.A.S. Messiah *wink wink*, but he said that he was very selective in diagnoses. My only guess is that he said so because my titers were normal & he only diagnoses patients when they are "totally nonfunctional". Still a bit blunt for someone who's met me once, though. & I thought that about the antibiotics too! Grace - I'm so confused though. The first test was positive. The second wasn't. He said he doesn't think that I have Lyme but my trust isn't exactly easily placed in doctors, & as much as I have read about the unreliability of Lyme testing on this forum the negative test isn't as concrete as one might expect it to be. Also, I found out that the first test was a Lyme AB Screen? I've never heard of that one. & the result was 1.16 H. This is what my Mom wrote down. I'm gonna see if he'll just fax me the results soon. Keith&Elizabeth - I don't know much about PITANDs. I thought that it was just P.A.N.D.A.S. from a strep strain other than GABHs, am I wrong? & could you please explain the microbe thing? Excuse my ignorance here. :/ Are ILADs doctors knowledgable about Lyme as well? I was also tested for Mycoplasma. I'm assuming that no news is good news as far as that one's concerned, haha. My Mom doesn't seem to understand why I'm honestly kind of hoping that the Lyme goes somewhere. Lyme is treatable!! & even though it doesn't seem to be totally accepted I can't imagine it being more difficult than P.A.N.D.A.S., which I've obviously done SO well getting treated for. If it was Lyme I could find a doctor & at least feel a little bit better. Also, I would't know, but it seems as though Lyme would be more accepted by schools.

THAT'S EXACTLY WHAT I SAID. I have never been more confused about test results.. He called my Mom, not me, but she took notes. He said that my bloodwork came back perfectly positive for Lyme. But when he sent it off for the Western Blot, all "fourteen bands" were negative. My question is.. If I had a positive Lyme test. Shouldn't that just be it?? If they did do that.. What would that mean?

THAT'S EXACTLY WHAT I SAID. I have never been more confused about test results.. He called my Mom, not me, but she took notes. He said that my bloodwork came back perfectly positive for Lyme. But when he sent it off for the Western Blot, all "fourteen bands" were negative. My question is.. If I had a positive Lyme test. Shouldn't that just be it??

Also, who do you schedule a PET scan with?

By the way - Lyme test came back positive. But all fourteen bands of the western blot were negative. Can someone please explain what that means? __________________________________ Edit: I looked it up a little bit. But I'm still really confused. From what I've seen more often than not the Lyme test is negative & then the bands are positive? & with us P.A.N.D.A.S. kids.. Aren't our antibodies already just totally messed up? Can I really trust a test relying on antibody response? (From what I've read. Correct me if I'm wrong here, because I am totally ignorant on this subject). Also, from what I've read Lyme doesn't typically like to hang out in the blood. If the only time I've ever been bitten by a tick was a whole five years ago, is my doctor right for completely brushing Lyme off after this one negative test, even though there was already a positive?

Test came back positive for Lyme, but the western blot was negative? I'm going to call him tomorrow to ask what lab both tests were done through. My antiDnase-B was only 85. I don't know about the ASO. He talked to my Mom, not me. I wasn't even home. I am absolutely inconsolable right now. He said the words "Your daughter does not have P.A.N.D.A.S." to my Mom. As if it wasn't difficult enough getting support from her, now she has a doctor telling her I don't even have it. She said he didn't explain why, which I am REALLY interested in hearing since he expressed pretty clearly that he was not a fan of Beth Maloney & believed that titers were not at all diagnostic of P.A.N.D.A.S. "No P.A.N.D.A.S." means no Augmentin. No IVIG or anything else that I was secretly hoping for that could have made this year less Hellish than the last. On the way home my Mom started her speech about how I was just depressed & I just lost it. I thought that this was going to be a better year, one where Dr. Goebel would actually help me & I might even get to, ya know, feel better.. Cos I don't even remember what feeling better is like. I had so much hope for this year. It's only the second week & I'm already falling asleep in class. But every single time that I felt bad.. I just imagined how great it would be not to be so anxious. How awesome it was going to be when I could take notes without dropping my pencil constantly. How amazing it would be just to feel fine. All I want is to feel better.

NewBeginnings - I DO have P.A.N.D.A.S. My symptoms started before I had ever even seen a tick (making sure to spell it with a k so that tick & tic don't get confused, haha). Motor tics, compulsions, & anxiety started at four years old. I was bitten by a tick in the fifth grade, which means that I was either ten or eleven (honestly don't remember), & my symptoms EXPLODED in the sixth grade. Completely nonfunctional. Placed in the Special Ed room at times. Just absolute H###. I've had two negative strep cultures in my entire life, even though I am tested every single time I see the doctor by now. Always high in GABHs, specifically, & exacerbations can be linked to strep on the rare occasion that we actually know when I'm infected. I do continue to feel absolutely horrible even when not infected though. I've always just brushed this off as over a decade of untreated antibody assault on my brain taking its toll. I saw my first ever P.A.N.D.A.S. specialist about two weeks ago & had blood drawn the Friday before this one just past. This doctor was absolutely great, & he let me see all that I was being tested for. I was having my antiDnase-B & ASO titers run, I was being tested for Latent Lyme Disease (is this the same as Tertiary???), Mycoplasma infection, & having my cholesterol, iron (I'm ridiculously anemic), & a few other routine things checked. When the three day mark came & went we figured that no news was good news, but when a week passed we decided to call them today. His nurse said that he hadn't called us back yet because my bloodwork had come back "extremely abnormal" & he had been trying to get in touch with an infectious disease specialist who could help me better than he could. When we asked what this was all about, she told us that she couldn't say & that when we talked to my doctor he would tell us what was going on. I've been told that Mycoplasma can also be treated by ID specialists, but I'm looking into Lyme right now because A) I just don't know as much about it as I would like to & My respiratory system is probably the one thing that I've never had a problem with, so Mycoplasma seems a bit odd. Yes, I realize that Mycoplasma can occur without respiratory complications & yes, I also assure that my body is most definitely not afraid of "odd", but I'm just trying to prepare myself in case this does happen to be Lyme. It would be weird if my symptom explosion just so happened to coincide with a tick bite.

I suppose the fact that we're actually finding things out is good, actually. Just wish the hits would stop coming, ya know? I've been distracting myself with drawing but it's a little difficult. After having seen such a horrible doctor for years I'm not used to actual progress, so it's a bit frightening to actually be presented with the possibility of something ELSE. I posted on the Lyme board! I'm trying not to stress myself out too terribly but it's easier said than done. I don't know much about Lyme, but if it's easily treatable, then by all means.. Emily, I haven't seen you post in so long! & yes, I was tested for Mycoplasma too but I seriously think that my respiratory system is the one thing that I've never had a problem with. It's confusing because a lot of the symptoms of Lyme, P.A.N.D.A.S. & Mycoplasma all kind of overlap.. & he said that he was expecting unusual strep results. I really don't think that the call would have gone the way it did if I just had some outrageous titers again. It sounds a bit odd to almost hope for Lyme, but with the fact that I was bitten by a tick less than a year before my symptoms exploded & seeing what the other possibilities are.. It seems a bit like the lesser of three evils (Myco & even weirder strep being the other two) here. We called the office back but I suppose we were too late. No one answered. My Mom promised to call until they told her something tomorrow while I was at school though. & if she doesn't, I will.

I'm normally on the P.A.N.D.A.S. forum, but after a not-exactly-uplifting call from the doctor today I've been wondering what exactly Lyme is. Like, at the surface P.A.N.D.A.S. is just "You get strep, your antibodies attack your brain, your brain gets mad." but when you get more into it you learn about titers & GABHs & the BBB & all sorts of stuff. Could anyone give me a more detailed explanation of Lyme? All I know is that a tick bites you & it just messes everything up. :/

I had my bloodwork done the Friday before this past one. I thought it was weird that we hadn't heard from him since he said it would take three days, so I had my Mom call the office this past Friday. The nurse said Goebel would be calling us, & he didn't. All the while in the back of my head I'm thinking "Here we go again.." But my Mom called back today & the nurse said that "something was abnormal". When my Mom asked what, she said that she couldn't say. She told us that the reason Goebel hadn't called us back yet was that he had been consulting an ID specialist. I don't think she realized that I know what an ID specialist is, & that I know everything I was tested for. The only infectious disease that I was tested for was Lyme Disease. He's supposed to be giving us a call back before the "business day" is over, but, no offense to Goebel, I doubt that'll happen. So, for now, I'm sitting here absolutely terrified because I know just about nothing about Lyme other than that it's BAD. My tick bite was about five years ago (same time as major onset). Can any of you Lyme Moms fill me in a bit on what exactly Lyme is? As far as I know.. A tick bites you & everything gets messed up. I'm so scared.

Gat'sMom - It's not often I hear of other teenagers! Haha. Highschool is especially hard for us. When my Narcoleptic symptoms started almost two years ago I pretty much had to decide to be completely open about P.A.N.D.A.S., so I can't imagine what it must be like to keep that a secret. I hope he's doing well though! & I know exactly what you mean about each day being a small victory. I started off strong on the first day & I can already see my symptoms escalating with all of this stress. Today was the worst so far, so I'm in need of some of those victories. It feels so good to walk out of the school doors at the end of the day just knowing you made it through. Simply to endure is to triumph, right? Suzan - Do both of your daughters have P.A.N.D.A.S.? I'm glad to hear they did well even with setbacks! I hope her arm gets better, too! My first day was good but I can already tell that I'm getting worse, which is sad seeing as how it's only been four days. On the first day I was pretty peppy & optimistic, just determined to not let my P.A.N.D.A.S. get in the way of me having a good year, but my resolve has already diminished. Day by day, I've been sleeping more & more & getting more tired, until today I finally heard the dreaded pencil drop. When I get ridiculously tired my eyes flutter, my head droops, & my hand just.. drops my pencil. Over & over & over. Something about low muscle tone, I think. Anyway. That happened for the first time today & I had to leave the room I was so discouraged. I love my school because there's never a dull moment & I get to wear what I want/listen to my iPod/text since the other kids are so horrible, but we are absolutely overcrowded this year. Can you say a-n-x-i-e-t-y? I've told two of my teachers so far, & I'm waiting to see if my schedule changes (which it hopefully will) to tell more. Basically, it's been bittersweet. Doing normal things like going to school feels so good, but then something gets in the way. Although, I will say, I am not NEARLY as bad as I was in August of last year. Crossing my fingers that that stays true, haha. Hope their school year continues to go well!

Rowens1214 - How was their first day?! School's been alright over here. I'm not complaining, because it's DEFINITELY not as bad as last year. Knock on wood, haha. However, it's the third day of school & I'm already in a battle with my counselor. But, oh well. Hopefully it'll get better! As far as symptoms go I haven't passed out, I have been markedly less tired than I normally am this time of year, but my anxiety is pretty bad. Overall, I'd say it's going good. Lynn2 - How old is he?! I hope he has a good year! & you guys are lucky! We used to start in the middle of August & get out in May. I miss that. The thing that I hate the most about school out here is having to wake up before the sun rises, hahah. Nancy - That makes me happy to hear! I had a meeting with all of my teachers last year, which helped IMMENSELY, but this year I'm just emailing them all since I'm not as bad off. It's always good for teachers to know what's going on & I'm glad that they're supportive! FCEFxer - Aww! I'm sorry. I hope she does well. At least it's only three hours & not three states or something though! Try to play the glad game. & it's good to hear that IVIG went well for her!

I was at Target today & I thought of you when I saw this. http://www.iansnaturalfoods.com/entrees.html Not ALL of it is GFCF & Target sure didn't have much of it (worst place for restrictive dieters, I swear), but I thought it was cool that it was kid oriented & they had a pretty good selection, comparatively speaking. Good luck!

Arial95 - Are you considering the diet for general P.A.N.D.A.S. symptoms, gastrointestinal issues or both? I'm gfree (not cfree, as you all have read what a battle gfree alone has been..) & it has been nothing less than a miracle for my stabbing abdominal pains that used to come multiple times a day & now only come up a couple times a week. I hope the diet change goes well! We live in a fairly small part of Texas, not exactly restrictive-diet friendly, & some brands that I see quite often are Amy's Kitchen & EnviroKidz. Amy's Kitchen is mostly a vegan brand, but a lot of their little frozen meals (like mac & cheese) are gluten-free. They, & lots of other gfree frozen items, are a tad on the pricey side though. EnviroKidz makes granola bars, cereal, & stuff like that all aimed towards kids (i.e. Leapin Lemurs to substitute for Reese's Puffs) that is considerably cheaper than Amy's. I've been a granola bar fiend for the past couple weeks thanks to them. If you have a Whole Foods or a store like it near you there is a brand called Udi's that is awesome as well. They make gfree white bread, "wheat" bread, bagels, pizza crusts, you name it. They're not as expensive as Amy's but they do go bad kinda fast & the sandwich bread is small in comparison to regular bread. As for sample foods to see if it would help, I would recommend anything mentioned above & also mashed potatoes & rice. When I was eating solid food everytime I ate (if you can call mashed potatoes solid..) those two were great because they're quick, easy, & if you make a bunch your kids could just throw their favorite toppings in. Hope I helped some! Sorry I don't know much about cfree. :/ _________________________________________________________ Edit : ACTUALLY.. I'm an idiot & I just now actually read into to casein free. Can people be casein intolerant or is that just lactose intolerant? Or, does it just make some people feel better not to eat it? Anyway. I haven't drank milk in years & I eat cheese very rarely. I have no idea how to check any of the above named brands for casein though. Sorry again. :/

Also, forgot to mention that I LOVED how they didn't mention any "controversy". Just talked about the actual disorder.

I know school started here today but I don't know about other places. How are everyone's little ones handling the new school year?

Thank you! & we are having him do that, he just couldn't do it the day of on such short notice.

Off topic, but how is your little one doing? I haven't seen you on here in a while!

WorriedDad - "Online P.A.N.D.A.S. family"! I didn't forget about you! & I don't plan on giving up anytime soon. It's been way too long of a fight at this point. GraceUnderPressure - We went to that doctor before I really started doing all of my research, so I figured that the way he handled things was just.. how it went. Ya know? I always thought it was weird, but I thought that's just how it was supposed to go. Thank God I learned differently though. Now we can actually make, dun dun dun... PROGRESS. Such an exciting thought. JustineKno - Thank you!!!

Thank you all! PANDAS_Denmark - I've never heard from anyone outside of the US! & yes, I've read that article. Thanks for sending it though! Narcolepsy runs in my family though. G said that he was leaning towards petit mal seizures because he basically said that it was "highly unlikely" that someone with a strep immunity problem could get another problem through genetics that COULD be linked to strep. I don't know if I worded that right, but he was basically saying that if it was Narcolepsy I was one incredibly unlucky girl. Bloodwork gets done on Friday, WE get the results in three days (past doctor would never let me see my titers. He'd just say they were high), & then we have a followup appointment. Hopefully, if nothing else, I can at least get some Augmentin while we're working on other things like the seizures & such. I'll let you all know! For now, it's back to school shopping time.

Sorry to veer a bit off topic here, but could you please explain exactly what antineuronal antibodies are, Buster? I know they're the bad antibodies that think they're attacking our strep when they're really just attacking out brain.. But that's about it. What makes them different? Why are they called "antineuronal"? & what sends them to the brain, of all places?

Appointment with Dr. G today went quite wonderfully, if I do say so myself. I was just a tad giddy to have a doctor look me in the eye instead of keeping their gaze focused on a prescription pad. I will say, he is pretty eccentric. One of the first things he told me was that he was NOT a P.A.N.D.A.S. expert. He said that he has diagnosed a few kids, & that he was adopted by the media/P.A.N.D.A.S. community by word of mouth. He admitted that other doctors knew much, much more than him. I got no written diagnosis though. He said the he only makes diagnoses when kids are left nonfunctional by their P.A.N.D.A.S., which at a time I most definitely was, but not so much now. He said that he wouldn't feel right diagnosing me over a decade after what we suspect to be the initial onset when he didn't see my P.A.N.D.A.S. when it was more textbook & more severe. This makes sense to me. I'm not mad about it. Getting my medical records from Dr. Kovacevic "didn't make it on [my mom's] to-do list" while she was in Chicago, so we had no backup, which was more than a little frustrating (although I think we're even after I locked her keys in her car while her car was on & the AC was running for over an hour this morning...). I have an appointment to get bloodwork done Friday morning (Mycoplasma, antidnase-B/ASO titers, Lyme Disease & more), I'm making an appointment to get tested for group B strep (definitely not looking forward to that one), & I am scheduling a full polysomnography/recorded EEG. I was bitten by a tick when I was ten. He said it's not likely that it would by Lyme since it was in north Texas, but that there was no harm in testing. I asked about the Igenex lab & he said that you only had to worry about which lab to send it to when testing for Latent Lyme, which he wasn't looking for. I don't know too terribly much about Lyme so I didn't argue. Also, I HAVE had an EEG before. I'm having another one because he thinks that my Narcoleptic symptoms have actually been petite mal seizures & he doesn't understand why my last EEG, in November, was at nine in the morning if they were looking for sleep related Epilepsy. This made a lot of sense. So, I have an overnight one. I don't know what to think about the Epilepsy proposal, in all honesty. My last EEG showed "abnormal brain activity", but my Dad was laid off & I lost my insurance immediately after that. Once I got it back my symptoms had improved & I had already vowed never to go to that doctor again, so it was never looked into. Also, my mom did go with me. She had to leave the room frequently to call locksmiths/insurance/whoever else in a desperate attempt to get her keys out of her car (which I have no one to thank for but myself), but for the most part she was there & seemed to be listening. More than once G asked her a question & my Mom just got a confused look on her face & said "Ask her.", while pointing to me. Dr. G seemed pretty impressed with all of the research that I've done, & that made me incredibly happy. When we were alone at one point he asked me why my Mom didn't seem to understand much of what we were talking about & I just told him that as far as the typical P.A.N.D.A.S. community patient-parent relationship is concerned, ours is reversed. If I want an appointment made, I have to make it, where as most parents are dragging their kids kicking & screaming into doctor's offices. Most often, it's parents up until the wee hours of the morning doing research & typing away on these forums & then simplifying what they find out for their kids. Not the other way around. It's unusual, but I guess it's just whatever. You get what you get. Dr. G handed her a paper about P.A.N.D.A.S. & she looked at him & said "I've read it all before. She's told me all of this before. I just don't understand it like you guys do." I told the doctor how long it took her to make the appointment & all he said was "Well, thank God you're you." It also made me happy that before we left, he showed me everything he had written down, specifically the bloodwork writeup, & asked "Do you think there's anything I need to add?" Knowing that a doctor like that actually trusted my opinion on my own disease for one (instead of people brushing me off because of my age) felt so good. Also, someone on the forum told me that he doesn't treat P.A.N.D.A.S. From what I can tell, this isn't true. He said that he is a strong advocate for antibiotics, especially Augmentin (which he has a poster for right on the door). He said that he is sparing when it comes to treatment just like he is when it comes to diagnosing, though. When I asked him about IVIG he told me that he has never had a patient who's received it, & although he does believe it brings results he thinks that antibiotics are the better treatment because they are so much easier to obtain. Hopefully after all of these tests I can get my hands on some of those! Just thought I'd give you all a little update. Hope everyone's doing well!

I'm making a post about the appointment right now, you guys. & Peglem - Yes. Unfortunately. My Mom neglected to call Dr. K's office to ask them to fax it until a few hours before our Goebel appointment though, so they were unable to fax it. I was so angry. Dr. Goebel kept asking about titer numbers, test results, & all of this stuff & I was just like "They're all in my records.."

Why so many P.A.N.D.A.S. kids have other, seemingly unrelated problems like Lyme & Candida? Are we just predisposed to other disorders or are they somehow connected? I only started hearing about all of these related conditions when I started on the forum a few months ago, & couldn't help but wonder why so many P.A.N.D.A.S. kids seemed to be dealing with all kinds of stuff that seems so random. Also, appointment with Dr. Goebel tomorrow. Not nearly as excited as I was since I found out he doesn't actually TREAT, but I suppose it's better than nothing. We had my medical records sent to Chicago when we had an appointment with Dr. K. My Mom was in Chicago last week (I decided not to go since I figured I couldn't get an appointment & already had one with Dr. G anyway) & she told me today that getting my records "didn't make her to-do list" while she was there. Too angry for words when I heard that. I was hoping those would help.. But I guess we'll be going without them. High hopes anyway! I hope all of you are doing well.