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PIK last won the day on May 13 2014

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  1. YES. I had it. It started at like 14 but the feces hit the fan at 28. Yes yes yes. Keep checking for medical issues as the root cause . I had derealization too when it was at its worst, and I didn't know what it was. And what's stranger is that I don't know if it truly was derealiztaoin or if I was having a seizures and it was my eyes moving like that. It seemed as if I was watching a movie in slow motion through an old projector and the motion was not fluid, like normal motion, but "jagged" like an old home movie . Someone described her seizures to me like that without my having mentioned anything. So who the knows?
  2. I had everything you are describing. I had severe sudden onset OCD after contact with strep at around 14, and rheumatic fever at 17. It all eventually hit the fan at 28 with psychosis and just generalized insanity for lack of a better word. I am not a doctor, but your doctor should probably treat you with both antibiotics and psych meds.
  3. I don't have expertise. I suffered from PANDAS as a child/young adult and feel doctors in America are terrible. They just WILL NOT prescribe antibiotics. (This is just one of the many reasons why I think the docs there are terrible.) It has all become about cash and avoiding law suits, and peoples' lives are ruined in the midst of all this greed, and may I add stupidity, as most doctors there don't seem to be very bright either, as getting into medical school has much less to do with intelligence and more about having the money to pay for it, and mommy and daddy having had enough money to send you to private school to prepare you "appropriately."
  4. YES YES YES. Please search my old posts for my story. From my OWN experience, I know that it continues into adulthood. Doctors need to start listening to patients' stories. This thing ruined my childhood and young adult life. PIK
  5. I don't think age matters. Please search for my old posts to see my story. I ended up going crazy at 28. Anafranil helped me through the OCD, which I no longer require. I do get monthly penicillin shots. I would just have them check an ASO titer. Plus, can't you just buy antibiotics over the counter in the UK?
  6. Any time you want. Pame 7 wres mprosta. 011 215-450-1643 (kinito) or 011 215 923 3121 (spiti)
  7. My experience with it was terrible. I've never had SO MUCH anxiety in my life. It was like being in . But of course, everyone is different.
  8. Do you speak Greek? There is a Greek Cypriot rheumatologist in Philadelphia, Pennsylvania named Chris Derk 011 (215) 662-2638. I don't know if he treats PANDAS (I don't believe he does), but I think it would be a good start to speak with someone that speaks Greek in the medical community in America. I don't know about Cyprus but I do know that some Greek doctors are excellent, and then there are a whole lot that are terrible and say everything is just "psychological" or imaginary or whatever (einai matiasmeno to paidi!!!!) . I've dealt with this myself. Please do call him, or me directly at 011 215 450-1643. This is a cell phone number and I don't know if I can receive calls from abroad. Try it, and if you cannot contact me, please respond here. Good luck.
  9. I went to the doctor yesterday, and he said it was an "ulcer" on my tonsil. I swear it tastes like strep to me, but he took a swab for herpes. I don't know how I would have herpes, and he said he even doubted it. I ended up popping it with a pencil when I went home, and no pus came out, which I guess means that it wasn't strep, even though I have a strep taste in my mouth. There is much less pressure, but I've had a continued pulsating feeling the back of my neck, almost a clamp like sensation, as well as mild ear pressure and pain. I've also been steadily gaining more and more weight. I know this is a PANDAS forum, but I was just looking for some of your thoughts since I do believe I had PANDAS and I know inside me that all of these issues that I am having continue to be strep related.
  10. Hello - I have had the whole gamut of strep complications starting at like 14 with PANDAS, OCD, rheumatic fever, PSGN etc. I am now 37 and being treated by my family physician with once monthly Bicillin injections, which has really helped with joint issues, and I've felt better than I have in a very long time. I had contact with somebody two days ago, and my throat hurts, and I'm wondering if it's possible to contract strep while on penicillin injections. I had gotten the last penicillin injection probably like five days before having contact with someone who I think has strep. I don't understand how this is possible. I have a doctor's appointment later this afternoon, but I would appreciate it if anybody could shed some light on this.
  11. Following up on this thread - my internal medicine doctor agreed to give me monthly penicillin shots to see what happens. I had a visit with rheumatologist as well, and ASO is down from like 1050 to like 790. Anti-DNASE B is still high at around 380. What worries me though is that sed rate was high at 35. He didn't even mention it and I saw it when reviewing the labs. Does anyone have any info on sed rate? At least as it ties in with strep, rheumatic fever, and PANDAS? When reading about it I came across scary words like "cancer" and "viral illness (which translated to HIV in my mind). Please offer input. I am planning to call my internal medicine doctor on Monday and discuss with him.
  12. I absolutely think it can and does carry into adulthood. I had a similar experience with overnight onset OCD at 14, anorexia at 12 etc. etc., and my poop did not hit the fan until 28 when they were saying I was schizophrenic. I'm not schizophrenic at all. I found relief from the OCD with Anafranil. I went and saw Dr. T in New Jersey, who was not very helpful. Doctors don't seem to want to listen.
  13. I had the followup appointment with my doctor today. He did not want to re-administer a penicillin shot. I have had a steady decline since getting the shot last month. I felt great and have felt a little worse every day. I don't feel ill now per se, but my joints have started hurting again. And I gained back any weight I had lost. I'm convinced that the whole weight thing must have something to do with my kidney function. He said he didn't want to just give me medicine without knowing what he is treating. He suggested that I see another rheumatologist and have me a referral. So I will call the new rheumatologist tomorrow and try to get an appointment. I'm disappointed to say the least, but I'm not angry with him. I just don't understand what this big fear of antibiotics is! From what I've read, it is suggested that people get at least five years' worth of monthly penicillin injections after rheumatic fever. I simply asked him to give me another one, to see if it would have the same effects as the first, so we can have something to work with. I guess the fear of law suits just blinds doctors' logic. What else can I say?
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