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Everything posted by PIK

  1. I had what you're describing. When I was 12 I think PANDAS first appeared in me as an eating disorder (calorie counting, food restriction, fear of weight gain etc) but the poop hit the fan at 28, and the eating thing was totally different. Aside from MANY other issues, I was not eating. It was certainly not an eating disorder thing at all. It had nothing to do with concern of gaining weight, as I was concerned in fact that I was too thin. It was partly a fear of choking/dislike of swallowing, i.e. I was really aware of my swallowing mechanism. It was also a delusion. I thought I was swallowing little people. I know it sounds silly, but that's what it boils down to. And it just had to do with eating in general. Like I attached very special significance to what I was eating, what I was supposed to eat, what I shouldn't eat, as in magical thinking and rituals. My mom gave me a miniature bagel and to me it represented the year 0 when Christ was born, and it was holy and I wasn't supposed to eat it. I have a feeling that some of it had to do with being put on Abilify. This was a terrible medicine and caused me severe anxiety. I don't know if the swallowing thing was also partly an actual side effect of antipsychotics. Is your daughter on an antipsychotic? From my own experience with severe OCD, I think a lot of the fears and rituals revolve around the body, such as illnesses, contamination, as well as bodily functions (what goes in and comes out of the body). I wish I could be more helpful, but I just want you to be reassured that you're not crazy, I also had this, and it certainly did have to do solely with severe OCD and PANDAS. I guess it's harder since your daughter is much younger than I was, but I wonder if you approached some of the things I'm bringing up. Can she explain what it is about eating? I don't think anything with OCD is senseless - there's some kind of crazy logic behind it. Is it the texture? Is she afraid of being poisoned. Is it the taste? Is it the actual feeling of swallowing? Is she afraid of choking? Have her explain in her own way what it is. I remember telling my mom "I'm swallowing the little people" because each bite of food going down actually felt like I was swallowing a miniature person (imagine like an Oompa-Loompa.) All my senses were extremely heightened and I was super aware of everything. It just baffles me that psychiatrists know so little about PANDAS and OCD. If I can explain it to you, not having studied medicine, any competent psychiatrist should know about it too, but they're too busy talking and not spending enough time listening to their patients. My psychiatrist still questions whether I have schizophrenia, when it completely clear that clomipramine made me better, the gold standard for OCD, when none of the antipsychotics did anything. Add to this the fact the I had suspected rheumatic fever, glomerularnephritis, and a most recent ASO titer of almost 1600 with elevated dnase-B etc. I mean come on, what more do they need as proof, aside from the fact that every one of as is describing very similar things. It's not a mystery, PANDAS is really and they just don't want to investigate it sufficiently.
  2. Is there a correlation between PANDAS/strep and low vitamin D levels? I had VERY low levels of vitamin D. It was 9 and the lower limits of normal was 35. I'm an adult male. In any case, he put me on 50,000 units for about six months, and now I'm on 2000 units per day. It's up now to about 32. I felt achiness and fatigue when the vitamin D was low. I haven't noticed any psych issues with the vitamin D therapy at all. Then again, it might be different for children. I'm curious to know of any correlation between strep and low vitamin D levels.
  3. Hello everybody. I had a rheumatologist followup visit today. My ASO has fallen from about 1600 to 1300, and antidnase-B was also about 100 points lower than previous. The rheumatologist had initially put me on penicillin VK 500 mg three times per day x10 days then once per day indefinitely to see if the ASO would come down. After a few months I stopped the penicillin because I felt ill, as if I had meningitis. He told me today that penicillin can in fact cause aseptic meningitis (which I knew) and to try it again to see if I will be ill again. Again he insisted on only a once-per-day dose of 500 mg. Which is one of my question. Why such a small dose? I also asked him why I had felt ill for a period of about six months. Was it A) Just the penicillin Some type of rheumatic fever reaction to the high strep titers or C) both, and he said he was not able to answer that question. He said if I felt ill with the penicillin to discontinue it and that we would just follow the ASO titer. He also said that elevated ASO titers aren't always pathogenic (though I truly feel it is in my case with general ill feeling, joint pains etc.) Does all this sound right to you experts? He is a rheumatologist at the University of Pennsylvania. He must have some idea what he's talking about - it can't all just be hot air or utter ignorance. And the fact is I like him. He first suggested vitamin D deficiency, which I had severely, as well as sleep apnea and fibromyalgia, which I also have. So I don't really want to see another doctor, but I'm wondering about his non-aggressive approach to the very high ASO titers.
  4. I recently had an ASO titer drawn and it was 1300. A few months ago it was almost 1600. I went through a period of about six months of not feeling well. The rheumatologist put me on 10 days of penicillin V 500 mg three times per day, then once daily. I felt like I had meningitis with a severe headache on the penicillin and discontinued it. I have an upcoming appointment with the rheumatologist this week on Thursday and I would like some suggestions. What should I ask him? Should we try another antibiotic? Do adults do IVIG? Should I ask him about that? Please any thoughts are greatly welcome. I really feel like the ASO should come down and he should be aggressive with it. Also, psychologically I'm very stable as regards OCD because of Anafranil.
  5. How did she get Brucellosis? Don't you get that from infected pork and milk? I thought I had it but I used to live in Greece where I imagine it would be more common Apparently it's very common in some countries.
  6. It's interesting you mention eye pain. When I had glomerularnephritis, I felt my left eye pulsating, like this tick-tick-tick type of feeling, like a rhythmic tapping behind my eyeball for a few seconds every time it happened. Also, I was on a long course of penicillin for very high ASO and I felt dizziness and a nausea type of feeling, almost like meningitis. I thought I had mastoiditis, but then it turned out to be from the antibiotics. I decided to stop the antibiotics to see if it would resolve before going forth with a lumbar puncture, and it did resolve.
  7. So it's not just my imagination? It really DOES work? What does it do though? Is there really swelling of the brain that it reduces? I'm curious.
  8. I have headaches on and off, and joint pain, and ibuprofen really seems to help. Have others experienced positive things with ibuprofen? Aspirin doesn't really seem to do anything (even though a doctor told me that you're supposed to use aspirin for rheumatic fever which seems related to the "things" that everyone seems to be dealing with. When I was on a long course of penicillin (which I eventually discontinued) I had severe headaches and felt like I had meningitis and like my brain was swollen. The ibuprofen really helped with this. Other posts on here talk about Motrin. And also about brain inflammation. What are your thoughts with the ibuprofen please? Is there really brain inflammation and it helps it?
  9. Im in Pennsylvania, and maybe that is why, or maybe it was just sheer luck, but they just gave it to me. My sister and mother applied for it. I was hospitalized twice (which didn't help at all). They finally decided I had schizophrenia (even though none of the schizophrenia meds helped and the doctor finally listened to me and treated me for OCD. I only get about $500 a month, but it's the health insurance I and my family were worried about. I didn't have to go to court, I had a phone interview and I think the social worker and the doctors took care of the whole process. There may be aspects of it that I am unaware of, since I was in the hospital, but that is what I know about the process. I have recently started working and am thinking about discontinuing the disability, but I am afraid I won't be able to get health insurance to cover me or that I will start feeling unwell again and will be unable to work. I need to talk to the Social Security people to see what happens in the event that you want to go back to work - do they give you a trial period to see if you are able to work?
  10. A friend of mine had a very severe staph infection in his nose and all over his body, and he did a natural treatment with inhaled juniper vapors. I wonder if that would be helpful. I know his doctor was in NJ. I can find out details for you if you're interested. Also, I had a headache for a REALLY long time, it almost felt like I had meningitis. I was on penicillin at the time for very elevated ASO titers, and decided to discontinue it before going ahead with a lumbar puncture, and the headache gradually went away over the next week or so. I wonder, if your daughter is on antibiotics, if that may be causing the headache.
  11. Miss Mom - I had severe onset OCD after first becoming active with someone who had strep when I was 14. At 15 I had guttate psoriasis which i thought was just an allergic reaction. Also at 17 I had suspected rheumatic fever which I never went to the doctor for. I had joint pain which I just attributed to heat and smoking too much. I now know I had erythema marginatum on my back. The OCD and joint pain and depressive symptom lasted for years until I had glomerularnephritis at 28, at which time the doctors were telling me there was nothing wrong with me though my kidneys were failing. After sic months of fever, I took a one-month course of penicillin 500 mg three times per day, which made me pee and pee one night, and the fever resolved. The next day though I just went nuts. All types of hallucinations and ideas of reference. I was hospitalized and first given a diagnosis of bipolar, then schizophrenia. I kept telling them about PANDAS, which I had read about and which was clearly my story, but they wouldn't listen. All types of antipsychotics were tried and nothing resolved the symptoms until three years later when the psychiatrist decided to try Anafranil for OCD. It cleared everything up in like two days. It was miraculous. I am also on low-dose perphenazine. I have just about no more psychiatric symptoms now than most "normal" people. I feel a little numb inside and burnt, but I think that's due to going through three years of . I recently started seeing a rheumatologist which finally started listening to me. ASO was very elevated at 1600 and dnaseb at 600. He put me on penicillin which I discontinued after a few months because I did not feel well. I have a followup with him in a few weeks, so we'll see what's going on. Also he diagnosed me with fibromyalgia and sleep apnea. I think both of these started with the rheumatic fever, the sleep apnea due to huge tonsils and the fibromyalgia just a reaction. You can feel free to call me if you'd like to talk further at 215-450-1643. Thanks. When I first read about PANDAS a light bulb went off. I was like "THIS IS WHAT RUINED MY LIFE."
  12. I failed all my math classes in high school and I think it may have partially been due to PANDAS, along with bad math teachers.
  13. I was on it and it was absolutely terrible. Aside from massive anxiety, it caused me akathisia which lasted for a good three years. Please be careful with this medicine.
  14. My ASO titers were crazy, 1600, and I has been to the doctor twice regarding sore throat. Rapid culture and regular culture were negative, yet I still had strep. I always test negative for it though. Who knows?
  15. I had VERY high ASO (1600) and the doctor started me on penicillin. I had SUCH a headache for SUCH a long time. It felt like meningitis. Not knowing what else to do, I finally stopped the penicillin and the headache and meningitis feeling seems to have subsided over the past few weeks. If your daughter is on antibiotics, you might want to consider stopping them to see if the headache resolves. This is just my experience.
  16. I was put on penicillin for extremely high ASO titers and was not feeling well. I though I had meningitis and scheduled a lumbar puncture. While waiting for it, I decided to stop the penicillin because I've read about drug-induced meningitides, and I feel so much better. No joke. I'm praying this isn't just a coincidence, as the meningitis symptoms subside sometimes, but I feel a lot better today.
  17. This may be unrelated to PANDAS, I don't know. I've had a terrible headache and neck pain etc. for months now and I asked for a lumbar puncture and doc agreed. I have very high ASO titers in the 1600 range and high dnase B. Can this be related to headaches/meningitis symptoms? Also, has anyone had a lumbar puncture? How bad is it? I'm really scared.
  18. There was no goal. I was just wondering if it was something I said, or if others experienced the rudeness as well. They were REALLY rude, not just a tad, and I thought I may have said something wrong. And they DO stand in the way, because they form like a barrier between the patient and the doctor. They basically told me flat out that I can't be seen.
  19. My last hope in this whole saga was to get an appointment with Dr. B in Connecticut. I had called a few weeks ago and left a message, and they never called me back. Today I called again, and the secretaries were rude. The first one didn't know about and transferred me to the second one. She said I can't get an appointment because I'm on medicare. I said, can I pay out of pocket, she said that over a hundred people were on the list to be seen. I felt like they didn't want me to be seen because I'm on Medicare. Well when I call again I'm going to tell them I don't have insurance. Why would they care if I paid out of pocket anyway? I was just hoping that Dr. B could help guide my rheumatologist or doctor, and even me, in the right direction.
  20. I still don't understand. First of all, my titers were rising, from like the 600 range to the 1600 range. Secondly I have major OCD issues that are only controlled because of Anafranil, and thirdly I described my other symptoms to her (joint pain, headache, etc. etc) From what I had understood previously, the body wasn't reacting to the strep itself, but to the antibodies it produced against the strep, i.e. the ASO.
  21. I'm coming back from the infectious disease doctor. She said that high ASO titers are not relevant and that they themselves don't cause symptoms. I'm confused. Very confused. And I feel like poop. I tried to get an appointment with Dr. B today but his secretaries weren't nice at all.
  22. I had very sever OCD. At age 28 it came to a head with hallucinations etc. I found relief with clomipramine. It worked like magic. I was fine within a day or two of starting it. FINE. I think I have very minimal psychiatric symptoms now, probably what most "normal" people deal with. Definitely don't have OCD anymore.
  23. I had severe OCD like really starting at age 14, with OCD-type symptoms (fears you mention) at a younger age. I think you should certainly look into PANDAS. I believe that is what I had, and what I continue to have. I am 35. I believe I had rheumatic fever at age 16 which I never went to the doctor for, as well as glomerularnephritis. Presently ASO titers are at about 1500 and I finally got some attention from doctors. Good luck. Your story sounds familiar to me though, I think I may have a similar story to you.
  24. I have very high ASO titers, they were about 1600 now they're probably like 1300. I took 10 days penicillin 500 mg then once daily 500 mg still on it. It's been going on two to three months now that I've had a terrible headache and pain in the back of my neck. The doctor says he finds nothing wrong. I got a CT scan of the mastoid because I thought it may be mastoiditis, as my ears hurt as well. I have a HEADACHE. It waxes and wanes, but it's pretty much always there. Laughing or straining makes me feel like I'm going to pass out. Everything they checked for, including Lyme was negative. I'm so scared. I feel like I have meningitis. The doctor said to do a lumbar puncture to rule it out, but I'm scared, and I don't know if it's necessary. Please everybody, help me. I was taking aspirin but it didn't seem to help. I just feel so ill. I have an apointment with the doctor on Monday. Does anyone have any input? PS - I want to see Dr. B but haven't felt well enough to schedule anything. I tried calling once but they never called me back.
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