EmersonAilidh

When I first started ticcing it was honestly a comfort to watch "True Life : I Have Tourette's". For some of us kids it's nice to know we're not the only ones, even if they do show extreme cases. I had never ever seen anyone with Tourette's or anything of the sort before.

The Polio vaccine was just making itself known. CPR had just been invented. Ultrasounds were new technology, heart transplants were unheard of, & PET, CT, & MRI scanners didn't even exist. Half a century from now.. Augmentin could be the new Adderall. P.A.N.D.A.S. could be as well known as ADHD. Having Lyme won't make doctors run & hide from you. IVIGs could be as common as appendectomies. & I know for a fact that I'll be thinking of my ACN cyberfamily when these milestones are finally met. When the medical world remembers its purpose as a HEALER above all else.. When doctors are losing their licenses for negligence when they DON'T treat P.A.N.D.A.S. & Lyme kids instead of losing them for trying to save a child's quality of life. We'll have eachother to thank. <3

I. HATE. BRAINFOG. MORE. THAN. ANY. OTHER. SYMPTOM. Holy God almighty, "cognitive fog" is the one part of P.A.N.D.A.S. (or Lyme or WHATEVER ELSE, who knows at this point..) that has remained strong since it first came about. For me, it starts when I wake up & it's worse the more I sleep. Convenient how that coincides with me sleeping twelve+ hours a night, isn't it? My friends have taken to calling me Mrs. Self-Destruct after a Nine Inch Nails song as of late. ANYWAY. This is one of the few posts on this forum where I am finding it difficult to refrain from swearing. Explaining the frustration of brainfog brings more than a few expletives to mind. My brainfog hit me like a freight train this morning. We have A & B days (only four classes a day.. Ninety minutes a day), & Advanced Chemistry was my first class. For me, although I've never heard anyone else talk about it so it very well may be different for everyone, brainfog makes it feel like everyone is speaking an entirely different language. Comprehending anything being said to me is practically impossible when I get like this. There honestly is just no explaining it. It was the NUMBER ONE SYMPTOM I told my Mom that I was dreading this school year, & this morning I was reminded why. I left Chemistry class realizing that.. oh my God. I had absolutely no Earthly idea what the teacher had been talking about the whole time. It's so hard to remember where to go in school. It feels like an all-encompassing headache that is positively disorienting. In all honesty, it's beyond explanation. I just don't even know how I would begin to describe it to someone who had never experienced it. Emotions are haywire, simple tasks like walking become a chore, & conversation is all but out of the question. That's MY experience with brainfog. If you can't tell, I think that it upsets me more than anything else with this stupid disease. It's the absolute only thing that actually makes me feel disabled. If I knew that bringing my explosive tics back would rid me of the brainfog, I would honestly be stuck.

Why is there no "Fast Reply" on this forum like there is on the P.A.N.D.A.S. forum?? He said that there were no LLMDs in Texas. He "trusted" that I had been started on antibiotics after a positive reading (hah..), & said that if I wanted further treatment out of state was the only way to go. "There is just too much controversy".

Mama2Alex - That's what everyone said about scoring positive on my first Lyme test as well. I'm calling a doctor on Tuesday to get some tests run & I'm being sure to have an IGE MycoP thrown in there. & yes, I did. ILADs basically told me that I was SOL. Can I post that on here? Sorry if I can't, but, there's not really any other way to put that. Texas & being proactive about disease prevention/treatment do not go together well.

Giving up is most definitely not on my list of things to do. Thank you for the encouragement! & yeah, our bodies are mysterious things. The only two times that I've ever been negative for strep have been the two times that I went into CareNow because my throat hurt THAT bad. Every single other time, when my throat didn't hurt in the least bit, I was off the wall positive. I'm calling a doctor on Tuesday to set an appointment to, if nothing else, get some tests, including an IGE MycoP & one for Epstein Barr, which I had never even heard of until a phone conversation with one of my cybermoms just a few minutes ago, haha.

ILADS, Texas Lyme Disease Association, DFWLyme, & everyone that I've asked on this forum has told me that there is not a single LLMD in Texas. It's illegal to treat chronic Lyme with anything but a typical 4-6 week antibiotic course here. Could I call ahead & just ask how the doctor feels about Lyme? We haves LOTS of ID specialists around here for some reason. & what about the immunologist? I know that Lyme isn't really an immunological condition, but would he be worth a try? If nothing else, I could see him for my P.A.N.D.A.S.

Positive Lyme Screen (1.16 H), negative Western Blot, positive IGG MycoP (1.95 H), which is only surprising because I've never had pneumonia.. Or so I thought. Anyway. After all that I've been doing my research & all that, & I want to at least see an Infectious Disease specialist to get tested for co-infections & secondary infections (Babesia, Bartonella, Candida, all that) & possibly even pursue a clinical diagnosis. Do I need to see a particular Infectious Disease specialist if I'm dealing with Lyme? I know Texas & Lyme aren't friendly, so it seems like I couldn't just go to anyone. Is that the case though? I know of an immunologist in Dallas that does IVIG & PEX, & I've been wondering if he's P.A.N.D.A.S. savvy that he might be open to Lyme too. Could an immunologist run these tests or do anything about them though? Totally clueless here. Excuse my ignorance.

Well, when I see the ID Specialist I was planning on asking to be tested for all the secondary infections & co-infections of Lyme, so should I get the IGM ran then? I've never had respiratory problems, but I've also never ever once had pneumonia (Or so I thought...) so should I check it out just in case? & thank ou TygerToo!

I have homework, can't read all of the replies, but I thought I'd throw my two cents in. I'm no doctor & no, I don't have any links to send you to back me up, but I really think that it could/does. I say this because IVIG doesn't always bring kids back 100%. That, & for those of us who've been dealing with P.A.N.D.A.S. for a decade or more have some very real lasting symptoms even when we're not infected. Whether this is the neuronal pathways becoming retrained or actual brain damage, I don't know. I have heard of PET scans showing brain damage in the Globus Pallidus, Thallamus, & Basal Ganglia, but I have also heard of people going untreated for eighteen years & experiencing a full recovery. Overall, I just think that P.A.N.D.A.S. is such a varying disorder that we shouldn't put forward that it DOES or DOESN'T cause brain damage. Obviously there are lasting effects in some & not in others. I think that it just depends on how long the person has been left untreated, the severity of their antibody onslaughts, & just how perseverant their body is.

What's normal? I got my bloodwork lab today & the Mycoplasma is 1.95 H. There's a little note next to it but I can't read it.

KimBallot - Diagnosis Shmiagnosis. We just wanna make sure your kids stay jacked up on all kinds of pharmaceuticals instead of actually feeling better.. God forbid a bright future goes on OUR tab. IowaDawn - THANK YOU!!!! I just posted about this!!! If I'm denied antibiotics soon I plan on doing the exact same. I also dealt with the Alzheimer's, Parkinson's, & non-pediatric drugs. Funny how treatment is all too easy to come by as long as it's in that little orange bottle.

The very first time that I saw a neurologist I was in & out in half an hour, a prescription for stimulants in my hand on the way out. That doctor had tested me for nothing. That doctor had taken my temperature, blood pressure, & checked my height/weight. You know, all of the really complex, cutting-edge procedures. Over the course of the next three years, I never ONCE talked to that doctor for more than maybe fortyfive minutes at a time, & I sure as H### didn't get anywhere close to a diagnosis. What I had absolutely no problem getting, though, were pharmaceuticals by the truckload. Test after test proved nothing & this doctor would not give P.A.N.D.A.S. the time of day, but I left his office without a prescription pad maybe three times. Aricept for Alzheimer's. Tenex for blood pressure or ADHD. Risperdal for Schizophrenia. Depakote for Epilepsy. & above all else, Trazadone, Mirtazapine, Klonopin, Xanax... More benzodiazepines than I had previously thought humanly possible. That's not even including the ones whose names have escaped me. With the exception of insomnia, which in & of itself is no diagnosis, I was never once diagnosed with a single condition that any of those pills were used to treat. So tell me why, with four years of doctors now, that I can get pills & pills & pills like you wouldn't believe at the drop of a hat, but getting something as non-detrimental & as widely prescribed as antibiotics has proven to be nearly impossible. Why is it that those of us searching for IVIG with official P.A.N.D.A.S. diagnoses, folders full of test results, & multiple doctors behind us are denied time & time again, but kids having a little trouble paying attention in class can get an ADHD diagnosis & amphetamines in one doctor visit? Are people tested for depression, Oppositional-Defiant Disorder, or bipolar disorder? No. & how many people do you know who have no trouble at all getting anti-depressants, which can be dependence building? Now, I'm not doubting the validity of these disorders at all. Please don't take this that way. But I just cannot wrap my head around why the medical world seems to be handing out prescription pads to anyone who walks in with a headache, but we have to jump through hoops just to get some Augmentin. We are sick children & you have what is needed to make us feel better. What more is there?? When I was in the hospital after my appendectomy, I admired every single doctor that walked past my door thinking of how one of them might be the one that had saved me. Doctors ARE great people & the vast majority of them still have my admiration, but time has shown to me that some of them seem to have forgotten what medicine is all about. Philanthropy. Helping people. Saving lives. If we aren't receptive to new disorders, how can we expect to adapt? I wonder if "new" disorders met this same denial earlier in the century. If the new idea of a bacterial infection or an autoimmune reaction would topple the way that we look at psychiatric problems today, then so be it. Radical new ideas (like that one thing.. you know. The computer? It's only been around for a couple decades) are not only beneficial, but absolutely necessary if we expect to make any progress at all (not just in regards to P.A.N.D.A.S.) in doing exactly what medicine was meant to; STOP SUFFERING.

I don't have any experience or advice to give you but I am so sorry!!!! Things will get better somehow, I promise. I've posted it before, but I feel the need to post it again. "Be patient toward all that is unsolved in your heart and try to love the questions themselves, like locked rooms and like books that are now written in a very foreign tongue. Do not now seek the answers, which cannot be given you because you would not be able to live them. And the point is, to live everything. Live the questions now. Perhaps you will then gradually, without noticing it, live along some distant day into the answer." You're fighting for your children, YOU'RE in the right here. What's meant to be will be. Until then, you are in my thoughts. <3

I haven't seen any of these doctors but I just wanted to make sure that you didn't leave out Dr. Kovacevic!~

Timecrunch because I have homework but I wanted to respond. I DID have a positive Lyme test. That's the entire reason I'm pursuing this path. Some people have told me the first test gives false positives, some have told me it's hard to get a positive even when you do have Lyme. Some have told me that the second test has a 60-80% false negative rate, some have told me it is the most accurate. My point here is that yes, I'm reading all of what everyone is saying to me, but all it's doing is encouraging me to at least go see an infectious disease specialist to explore this more. From what I've read elsewhere the tests are hardly concretely diagnostic & since the majority of my time with Dr. G was spent discussing strep & my problems as they related to P.A.N.D.A.S., I'm just not comfortable accepting "Well the second test was negative so I'm done with you." It seems that Lyme is as, if not more, disorganized than P.A.N.D.A.S., so after hearing everyone saying completely opposite things (on here & in other reading) about both the tests & Lyme in general.. I'm just gonna go see a doctor. It's not as if that will harm anything. Unfortunately enough there is not a single LLMD in the state of Texas & I agree with my Mom that the first step is not to seek out of state help, no matter how beneficial it might be to see an LLMD. & I'm not throwing out P.A.N.D.A.S. My symptoms started before the tick bite but got exponentially worse afterwards. I don't really see how Lyme could cause P.A.N.D.A.S., but it makes sense that it would worsen it. Whether or not that's actually worsening the P.A.N.D.A.S. itself or just throwing in a new myriad of symptoms, who knows. I also think that we have to be careful about whether we're saying P.A.N.D.A.S. or PITANDs here. Is it not possible that if our antibodies are obviously already not doing their job right, what's to say that introducing a new, wild, invasive bacteria wouldn't elicit an unusual reaction from antibodies? Maybe not exactly attacking the Basal Ganglia & all of that, but I think that us P.A.N.D.A.S. kids, or maybe just me personally, can't trust our immune systems. I'm glad to hear about Dr. Cunningham doing research!

Tired Mom - Thank you! That's so encouraging & I'm glad to hear that your daughter is doing so much better. This doctor was the first doctor to ever even pay attention to me, so that meets "good doctor" qualifications in my book, hahah. Every now & then when I'm stuck in the middle of a bad period it's hard to remember how much worse I was four years ago. That gives me a little hope. I won't stop searching until I do feel better, that much is for sure. Mandy - When I initially got the tickbite, I only told my bestfriend at the time who was on the camping trip with me. When I came home a week later having gotten bitten by a tick & getting a rash didn't seem like much to look into. If you haven't noticed yet, my family is anything but medically proactive. I hadn't even thought of the tickbite until I started reading about Lyme on these forums. In three years of seeing him my old neurologist never asked me if I had been bitten. It was only when the test came back & my curiosity got the best of me that I googled it & discovered that my rash had most definitely been a bullseye rash. I had had minor tics, anxiety, & compulsions for years by then, but about half a year after the tick bite (I believe it was half a year.. My memory doesn't serve me well going that far back. :/) my symptoms "exploded". Tics that to this day I can only describe as "bodyrocking", SCREAMING vocal tics, & compulsions aplenty. Desks in the classroom had to be arranged in threes, for example. This "explosion" is what led us to seek a doctor & eventually find P.A.N.D.A.S., but I've always had symptoms that couldn't really be explained by P.A.N.D.A.S. For example, my disorienting headaches & horrible muscle pains. I've posted about my headaches, but I get them just about everyday, with some days off, to different degrees & they are absolutely mindblowingly painful & nothing helps. Also, muscle pain. I want to say that the muscle pain came even before the explosion, but I don't remember well enough to say for sure. Mostly in my shoulders but also in my legs, it used to bring me to tears everyday. Also, when every other P.A.N.D.A.S. kid seemed to be battling insomnia, I was dealing with quite the opposite. I. Can't. Stay. Awake. Doesn't matter how long I sleep (& I can sleep for fifteen+ hours a day if I have the chance), I NEVER feel awake. P.Mom - I have to go to school but I will reply to your post & PM when I get home! Sorry!!

I didn't mean it like that. It was just hopeful. I had a doctor who hasn't called me back to answer my questions & when I just posted the tests the general response was "Well now that you know you have Lyme"... You can imagine why that would be more than a little confusing. I didn't list a bunch of symptoms & ask "Hey, does this sound like Lyme?", I posted test results & had them explained to me. i do trust the people on this forum, but I would never call that a diagnosis. I've read all about the unreliability of Lyme tests, which is the whole reason that I posted. I still don't know what labs they were done at. Before your post, my questions about false positives (there is another post on the Lyme forum) had kind of gone unanswered. I was told that it was difficult to read positive on the first test even when you had bad Lyme & that it was all too common to read negative on the second test in the same situation. I haven't had a phone consult but I have emailed Dr. K. He told me that he believed I had P.A.N.D.A.S. I still believe that I do. As I said to EAMom, I was twitching before the tickbite. When I say symptom explosion, I mean when they all got horrible overnight & made themselves known & undeniable. & I understand your concern! I haven't taken what anyone said as a diagnosis or anything like that. Mainly they just confirmed my feeling that I should see another doctor. Whether I posted it or not I planned on finding an Infectious Disease doctor anyway. From there, who knows. For now, I'm just confused & still feeling bad. I can't remember who said it but on the name-change topic someone said that they could call it S### on Toast Syndrome for all we cared. I do not care what I have. I just want to enjoy my teenage years like I should.

P.Mom - Okay, now I am more confused than EVER. I never said that I had been diagnosed with Lyme. I posted what the doctor told me.. & everyone told me that meant that I had Lyme. I never dumped the P.A.N.D.A.S. track - I twitched before the tick bite. But before your post everyone I talked to had said "Congratulations on your Lyme diagnosis!" or something to the effect of "Now that you know what's wrong.." All I heard about were the false negatives on the Western Blot. I asked a billion times about false positives & no one answered... I am so horribly confused now. :/

CobbieMom - I think that this is good news too! No doctor would ever come out & say "You have P.A.N.D.A.S." on paper for me, but with a positive Lyme test I now have something to shove in my the face of my school & everyone else who's dismissed me as just another hypochondriac. The only downside to this, & unfortunately it is quite a downside, is that there are, get this, NO LLMDs in Texas. That has been the response from every single person & organization that I've contacted. The Texas Medical Board prosecutes anyone treating Lyme Disease, from what I've heard. Takes my lack of P.A.N.D.A.S. treatment anger to an all new level... I have no idea what to do from here. I have a positive Lyme test & no doctors within the state. I've asked around about Chicago since I have family there (how I was expecting to see Dr. K earlier in the year) but haven't heard back from anyone yet. WHY is treating Lyme illegal?? I know P.A.N.D.A.S. is "controversial", but having your medical license revoked for treating a sick patient is just.. disgusting. Vickie - He said that he has had a few patients, but that he is no specialist. He knew MUCH more than some doctors I've talked to but I don't think we'll be adding Dr. G to our acronym list anytime soon. & I really need to change that to four but I can't figure out how.. I've been twitching since then & I've had anxiety, compulsions, & a nasty relationship with strep for as far back as I can remember. It said two because my first motor tic came with talking, but my Mom remembered that it started when we lived in Grand Prairie, not Fort Worth, which would have made me four. Double whammy, triple whammy, quadruple whammy.. I don't care, just make me feel better! I've been in one of those "angry-at-the-world" moods today, if you can't tell. It went from "YAY! A DIAGNOSIS!" to "Wow. Another thing that I can't find treatment for." I've really got to stop hogging all of the controversial ones.

The Fast Reply thing went away so I can't remember who said what. Excuse the lack of organization here, haha. That's what I thought! Okay. I am so glad that I'm not crazy. I was just thinking "All of the false negatives that I read about.. & you're just going to assume that I had a false positive & not pursue it any further?" Detective EmersonAilidh, on the case. Are Igenex tests the same as CDC tests? Oh God. I have a whole new disease lingo to learn. So not looking forward to this, hah. & also, can someone please explain what Lyme is?! How does this bacteria cause all of these problems? Is it like P.A.N.D.A.S. with the stupid antibodies, does the bacteria just get in my brain & muscles & wreak havoc, or is it a combination of both or what? I have no idea what's going on. :/ _______________________________________ Edit: Also, could it make a difference that an infectious disease specialist, not an LLMD, did the Western Blot testing? Or does it matter who did it? Why do they allow a test with a 60% false negative rate to be viewed as diagnostic.. But they won't give long term antibiotics to sick children. Medical world, you confuse me so.

I PMed you. Would it be possible to have P.A.N.D.A.S. & other PITAND microbes?

SFMom - The only time I can recall ever having been bitten by a tick was five years ago. So if it is Lyme Disease it's more than likely into the third stage. Where is your son as far as progression goes? I honestly hope that we go down the Lyme path. All I want is to feel better. I don't care what it takes or what I have. I'm so glad that you got a diagnosis! & I've been talking to some Lyme people on the forum.. the general opinion seems to be that Texas has NO LLMDs. How can that be possible when we have so many ticks?! I don't think that my Mom would be willing to drive me out of state. :/ The closest is Oklahoma, & if we have none I highly doubt that they have any. I hope you & your son are doing well!

NewBeginnings - Thank you so much for everything!!! I am going to ask him to when I call him tomorrow. & I'm going to see if someone on here can recommend an LLMD that they know is good so that I'm not wasting my time! PacificMama - Thank you for the link! I'll show it to my Mom & we'll see which ones are in network. Do you have kids with Lyme? By the way, the nurse on the phone said that the first test was a "Lyme A B Screen" & that the results were 1.16 H? I have absolutely no Earthly idea what this means. They talked to my Mom & she wrote it down, so it might not even be right since the nurse that I talked to before they called my Mom flatout told me that she didn't know how to read bloodwork & my Mom could have written it down wrong.