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Everything posted by PIK

  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?
  14. I have it too. I can't stand the television. It drives me crazy. The water running a the kitchen sink too. When my mom stirs things in a pot with a spoon. It sounds silly, but these sounds drive me crazy. I think it's definitely OCD/PANDAS related. I think I've had PANDAS since 14 but the misophonia started after I had a severe psychotic break and GOT BETTER three years later. Break happened at 28 and I got better at like 31-32. The sound of the TV drove me crazy from the start of the break, but the other stuff started after I got better. I just feel like the sound of a television is just overload for my senses, and it makes me want to scream. It just give me unbearable anxiety and makes me want to go into a rage. As for the other sounds that bother me, they're just weird and unexplainable. I never had a problem with those sounds before. Something happened with the break because during that time I was super sensitive to sound.
  15. I have a followup appointment in one month. I don't know if he's planning on repeating the injection (which is what I think is done for rheumatic fever) but if I continue feeling better, I will ask him to do so. I just got results from the ASO titer he drew. It is still at 800.
  16. I sent a message to my primary care doctor on Tuesday night with symptoms etc, and he called me at work to go in yesterday. He gave me a shot of penicillin 1.2 million units. I hesitate to mention this for fear of jinxing it, but I FEEL BETTER!!! I feel SOOO much better. I don't know if it's all in my head, but I don't think so. I truly feel better. Also, I've noticed that all the sugar cravings and voracious appetite have stopped. Though I had always been slim at like 150 pounds, I've gotten up to 200 and all I could think about was food - like sugar and glazed donuts. Today, I ate like a normal person and wasn't starving. There must be some connection.
  17. I sent a message to my primary care doctor on Tuesday night with symptoms etc, and he called me at work to go in yesterday. He gave me a shot of penicillin 1.2 million units. I hesitate to mention this for fear of jinxing it, but I FEEL BETTER!!! I feel SOOO much better. I don't know if it's all in my head, but I don't think so. I truly feel better. Also, I've noticed that all the sugar cravings and voracious appetite have stopped. Though I had always been slim at like 150 pounds, I've gotten up to 200 and all I could think about was food - like sugar and glazed donuts. Today, I ate like a normal person and wasn't starving. There must be some connection.
  18. Thank you for responding. I do have some questions though, if you can help: 1. You say Swedo says twice per day - is it the same 500 mg dose split in half, or is it 2 doses of 500 mg? I doubt I can tolerate more penicillin, but I don't see how splitting the dose in half could hurt. 2. The headache stops eventually (days if not weeks later) when I don't take the penicillin, the joint pains are on and off. Dr. T tested for like EVERYTHING, and I've never had an EM lesion with not much exposure to tics etc. I kind of doubt Lyme and lean more toward the strep since the ASO titers are SUPER elevated, and all the Lyme testing has been negative. 3. I'm 36 now. Rheumatic fever was at 17, glomerularnephritis at 28 with ongoing sudden onset OCD issues since strep exposure at 14. I doubt OCD was a diagnosis then, let alone PANDAS. I remember being taken to a psychologist who would just go on and on about low self-esteem, as if ALL 14 year old kids don't have low self-esteem issues. I have considered tonsillectomy, and still think about it, because I think it would greatly help my sleep apnea too, but the horror stories regarding the pain involved really scare me. 4. I sent an e-mail regarding all this to my rheumatologist again. I will see what he says and perhaps bring up Azithromicin or other alternative to penicillin.
  19. Please help me everybody. I've written here before. My ASO was as high as 1600 about one and one-half years ago. I saw a rheumatologist who put me on penicillin - 500 mg 3 per day for 10 days then 1 pill per day long-term. I started the course but felt ill, and he told me to stop it. I tried taking the penicillin on and off but it always made me feel ill. I felt like I had meningitis and had very bad headaches, even went as far as going to ER for MRI of the brain because I thought I had a tumor I saw Dr. T who put me on a course of clindamycin I think and rifampin for ten days. He wasn't helpful at all, but what's good is that he tested for like EVERYTHING, and I don't seem to have anything else going on with my health. I'm fairly certain I've had rheumatic fever in the past and glomerularnephritis. I did have severe issues with OCD and also some hallucinations etc. They went as far as telling me I was schizophrenia. I never believed it, and all psychiatric symptoms have just about vanished. I am on Anafranil and a super low dose of perpehanzine, both of which are being reduced more and more by psychiatrist. The ASO has slowly come down, now it's at about 800 something. I started for about a week now, taking Penicillin 500 mg per day the way the rheumatologist had first suggested. It makes me feel ill, but I'm starting to think that it might truly be a Herxheimer reaction, and now an allergic type reaction to the penicillin. It gives me a headache and joint pains, with pain in my cervical area, but here is what makes me think it's Herxing - my TONSILS and EARS hurt, as if I have a strep throat again, thoughI don't. I've even had slight moisture in the morning from my ears, though my doc says there's nothing wrong with my ears. Does anyone have any input? I've decided to stay on the penicillin and fight, but today I just felt SOO ill. I slept all day. What has been really helpful, more than anything, is ibuprofen. I don't like taking meds, but I've been taking it lately. And today I took an 800 mg pill, and it really made me feel better. The tonsilar and ear pain stopped after a nap, and even the neck pain stopped, which feels like some kind of vice tightening its grip on my neck. Please enlighten me with thoughts. I've just about given up discussing it with doctors, because I don't think they really know what they're dealing with.
  20. He's probably not bipolar. I was first diagnosed bipolar, then it turned into schizophrenia. BS!!! It was all OCD issues related to strep. Please get your kid to a competent doctor!
  21. I don't think he is a bad person. I just told him the truth about what input I had received from others on this board about him, but that I had given him the benefit of the doubt in going to see him, and he told me not to contact him again. I was very disappointed, or appalled rather, that they tried to get me to pay again to discuss results. The truth is, I did not pay again, he e-mailed me info in the end, but I called like five times. Furthermore, I think doctors fall into a realm of society that don't do what they do for money - thus I feel he was obligated to at least lead me in the right direction as regards medical care, even if he had nothing to gain and actually was offended by my e-mail. I firmly believe I had PANDAS as a teenager as well as rheumatic fever and all associated strep sequelae. I went through a period of hallucinations and psychosis at 28 which seem to be completely unrelated (i.e. helped or not) to what medication I was on. When I mentioned the olfactory hallucinations I had to a priest, he urged me to look into seizures. When I read about "psychic seizures" I was absolutely floored. What was being described is exactly what I had experienced, and I wanted his input. I don't know who else to discuss this with, and who can guide me in the right direction as regards seeking treatment and/or diagnosis clarification, but I'm certainly not going to pay $400 to have someone tell me what kind of doctor to see. My dissatisfaction has a lot to do with my general dissatisfaction with the healthcare system in this country. I think it is unethical for ANY doctor to be permitted to charge $400 for a visit, and to be out-of-network at that. If any patient requires treatment or any type of input, I feel that they should be able to get it. It's a human right, and no one should be able to profit from others' illness and misfortune, and be allowed to hoard any helpful knowledge they might have and be protective of it in such a sickly way.
  22. Yes - please feel free to PM me for further info about my expensive and unfruitful visit with Dr. T. It seems that despite being the Land of the Free, this board is monitored and censored.
  23. I asked for further help from Dr. T in Ramsey after having seen him and shelled out a LOT of money for a consult a few months ago. I made it clear that I was not able to pay him further and that I needed his guidance, at least in finding another doctor. I also made it clear to him that the general consensus on this board from numerous people in private messages to me is that [Edited by admin] but I was giving him the benefit of the doubt. While I was there, a father called about his child, and the secretary lied that they were busy with "overseas" calls. What Dr T. and his secretary don't know is that the other person present during our meeting is an attorney. Feel free to PM me.
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