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Everything posted by PIK

  1. I was under the impression that when I was really sick, I hallucinated because of psychosis. Now I'm wondering if it wasn't seizures instead. I smelled things before the visual hallucination I had. I also experienced episodes of seeing things going "in slow motion" for lack of a better word. Today I was discussing with a friend of mine who does have a history of seizures, and I asked her to explain and put in words what she experienced, and what she said just blew me away. She was able to describe in words what I have not been able to describe for years. It wasn't just seeing something go in slow motion. What she said was that it was like seeing something from an old film projector - not fluid motion, but broken - and that's EXACTLY what I experienced too! The three episodes I recall really well were once I was on the street, and there was an asian man a riding a bike. It was as if he was going in slow motion in relation to the rest of the scene in front of me, and the reason I think I had the feeling he was in slow motion is because I perceived his movements exactly as she described, as if through a projector, slow, broken, and shaky - not fluid at all. The other two episodes were in two different super markets. One was just seeing many people moving around in the same type of film-projector motion with their carts in the fruit department. My sister who was with me got frustrated being stuck in this crowd of people, and waved her arm in frustration and grabbed me to get out of the congestion, and her motion of moving her arm broke the film-projector "spell". The third, again in a supermarket, there was on old lady with a shopping cart, and she was moving in the same film-projector fashion. I don't know if what I'm describing is a form of "derealization". Being sick, this new perception of reality seemed satanic to me and really scared me. There was something really demonic about what I was seeing, and I incorporated this into my hyperreligious themes. I really would appreciate any input I can get on this. I never did believe I was either bipolar or schizophrenic, the two diagnoses that were offered. Please enlighten me everybody.
  2. This might seems like a really stupid question, but please bear with me. Some have suggested that I may have C. Diff because of diarrhea/explosive diarrhea and the antibiotics I am on. I only have three days of the antibiotic left, so I don't want to stop it. If it is C. Diff, I'm imaging it's mild because I don't have a high fever (maybe a low-grade one as I sometimes feel feverish). Anyway, will it go away when I stop the antibiotics if I have it? Also some say probiotics. Is that just eating yogurt? What else should I do? I read a nurse's forum where they were saying they can smell it. I don't really notice a different smell, maybe a little stinkier, but certainly nothing lethal. Also, I have not lost my appetite. I just have diarrhea that is sometimes explosive with gas. Please enlighten me.
  3. I'm feeling disgusted. I had such high hopes when I went to see Dr. T in New Jersey. He said I don't have Lyme or coinfection. I had: 1. Strep titers still high at almost 1000 2. Low B12 3. High HHV-6 4. High proline. He said my immune system doesn't look like that of someone with PANDAS, but he also said that he does not have experience with adults. I feel silly that I even went there now, since I'm an adult. But I KNOW I had PANDAS as a teen, starting with eating issues/disorder at 12 and then overnight onset OCD at 14 after I started kissing/having contact with an adult boyfriend. When I first read about PANDAS, I was like OMG this is what ruined my life. I also have had suspected rheumatic fever and glomerularnephritis. He put me on 10 days of Rifampin and Clindamycin four times per day. He told me to take Valtrex, but did not elaborate on this. I still feel like I have meningitis/stiff neck/headache sometimes. I have been having diarrhea/explosive diarrhea, which I hope is only due to the antibiotics. I asked him to speak with my psychiatrist directly, since all the tests he did were so far beyond my medical knowledge, and probably that of most doctors. I just feel disgusted and frustrated. Even he didn't actually diagnose me with anything. As an addendum, I'm really starting to think that my hallucinations weren't due to psychosis at all, but rather to some sort of seizures, as I think I had auras (smells) before the visual hallucination. Also I had like an altered sense of reality in that I saw some things going on in slow motion (for lack of a better way to describe it). I think it's called derealization. I was also super hyperreligious and almost felt like I was foretelling events before they happened. Before I had had hallucinations and all this craziness, I had been ill with suspected glomerularnephritis with a low-grade fever going on for like six months and took one month's worth of penicillin. I just need some input please. What does everybody think the next step should be? I kind of don't want to even call Dr. T again because I just feel like I'm out almost $400 (which is a huge sacrifice for me and my family) and nothing definitive other than the antibiotics came from the appointment. I knew I needed antibiotics before I even went, but the damn doctors were just unwilling to prescribe them.
  4. I'm curious about HHV-6. From what I've read, just about everyone has it. But the doctor told me my IgG for HHV-6 was high at 10.15. He told me to take Valtrex. I don't understand though - wouldn't this value be high for everyone, as everyone has had it in childhood? I read about the connection between HHV-6 and some types of seizures. I wonder if my "psychotic symptoms" (mainly olfactory hallucinations) were actually seizures. Also, I read about HHv-6 and its connection to Chronic Fatigue Syndrome. I've been diagnosed with fibromyalgia . I wonder if I have CFS as well, as I feel like utter poop most of the time. Please enlighten me everybody with your thoughts and knowledge.
  5. I need to follow up on this, to be fair. I called a few more times, and I was finally able to schedule a phone appointment with the doctor, and they told me I won't have to pay more. Apparently he had some family issues, and they're not lying about that. This is my last hope. The only thing any doctors have been able to find so far has been very elevated ASO at like 1600, elevated anti-dnase B, and very low vitamin D. He ordered SO MANY tests, and I am just praying he found something (not too serious). But I can't even begin to imagine what. I felt great yesterday with the sunny weather, and today, but this evening, it all came back. After two active days, I am exhausted, my ears and mastoids hurt, and I have neck stiffness and the meningitis feeling again. Please pray for me everyone. That they find something to fix, but something that's fixable.
  6. I saw Dr. T and I liked him because I felt like he was very thorough. Though I heard the secretary lying to people on the phone that he was not there and that there was an international call on the other line to get people off the phone. I later called to ask about my test results etc., and she tried to book another appointment for me. I told her that I had clearly told him that the consultation was a sacrifice for me and my family, and that I would not be able to shell out any more money. She told me he was not in today and to call tomorrow. I was told by others about this type of behavior in the office, but going there was my last hope, and I feel really disappointed. I'm giving him the benefit of the doubt, and will call again tomorrow.
  7. I had a meeting today with Dr. T in Ramsey NJ and I am very impressed. He was EXTREMELY thorough, and listened to EVERYTHING I had to say. I could feel his brain working as he was listening to me. He ordered a lot of tests and told me he would get back to me I'm feeling very hopeful. Other than my rheumatologist, he is the first doctor I've spoken with who believed me about being ill and didn't just discount what I had to say as "somatization", psychological issues, or some sort of psychosomatic delusional process. I really am hopeful that this will be the end of like a 20+ year battle with physical and mental complaints ruining my life. But just the fact that a doctor took me seriously just feel so good.
  8. YES I can tell you firsthand, I got better. I am probably not the typical case. I had PANDAS in my early teens, rheumatic fever, OCD. But the poop hit the fan at 28 after glomerularnephritis. I supposedly (according to my psychiatrist that doesn't want to admit he was wrong) have some type of special unique schizophrenia that only responded to Anafranil (OCD med) and NO antipsychotic therapy, that was very late onset of 28, though absolutely no one has schizophrenia in my family and my ASO was completely ridiculous at like 1600. I don't buy it one bit. I actually have an appointment with a PANDAS specialist this coming Monday, so I will be certain to post then. I disagree with Dr. Swedo that people "outgrow" it - maybe some people do, but that wasn't my experience, as mine seems to have exploded at 28. In any case, it took three years but I got better (with the introduction of Anafranil) and now, almost 8 years later, just a few weeks ago on Good Friday,something clicked in my soul, and everything went back to normal. Call me schizophrenic, crazy, whatever, but I firmly believe that part of it was a religious experience for me (not trying to persuade anyone) but whatever one believes, I think it's important to have faith in God, Christ, the Virgin Mary, Allah, or some higher power. PLEASE don't give up on your kid. My mom certainly didn't, and this certainly helped me a lot. When I was first hospitalized the doctor said that the most my family could hope for for me would be maybe working at McDonald's in some kind of occupational therapy "special kid" program, but HE WAS WRONG, and my mother appropriately just ignored his opinion and persevered.
  9. Excuse me. I didn't realize the rules. Please send my private messages as dictated above. Thank you.
  10. I was curious about seeing this doctor. Honest opinions please. A consult is very expensive and I need reassurance. Thank you.
  11. Hello everybody. I have posted on here before. My ASO was as high as 1600 a few months ago and two months ago it had gone down to like 1350 and now on repeat testing it was 1050. I had been on 500 mg penicillin once daily for this, which I recently had to stop a second time because of joint pain, fatigue, and generalized not feeling well. I'm curious - from what you all know, is it going down because of the penicillin therapy, or would it have gone down anyway on its own? I don't seem to be getting a clear answer from anywhere about ASO titers. One doctor told me not to worry about elevated ASO as it didn't indicate anything (according to her) but it is clear to me that it certainly did, as I am certain I've had PANDAS, rheumatic fever, and glomerularnephritis. Also, does ASO get elevated in "normal" individuals upon contact with strep too, or is this elevation noted only in susceptible people? If all the sequelae of strep infection are due to a reaction to the antibodies themselves, how come some doctors claim it's not indicative of anything. I don't understand. I would really appreciate a clear answer on this question. Does an elevation simply indicate past exposure to strep, or is it indicative of sequelae?
  12. Penicillin causes this. It's called black hairy tongue. I don't think it's serious at all, but others will respond as well.
  13. I agree with the above poster. I've run into much frustration with psychiatry in general. I am certain I have PANDAS and have suffered from it from years. They went as far as diagnosing me with schizophrenia - though NONE of the schizophrenia meds worked at all. What did finally work was Anafranil (clomipramine), and it worked extremely well. I went from being almost completely disabled to "normal" almost overnight. I see a neurospsychiatrist who finally prescribed it after three years of putting me through and trying everything. He still perseverates on and on about this schizophrenia I supposedly have, but aside from telling him that we both know he's wrong, I just let him go on and on. My frigging ASO was at 1600 and I have had all complications of strep, from rheuamtic fever to glomerularnephritis, even guttate psoriasis. I just ignore him and go to get refills basically, and am working with a rheumatologist as well, who is the only doctor that's believed me about my physical symptoms. I do plan to see a PANDAS doctor when I get a chance. I had called Dr. B's office in Ct, but the secretaries were rude to me. If your kid has OCD issues and phobias, I would highly recommend at least trying Anafranil. It saved my life, but then again everything works different for everybody. I'm certainly not a doctor and don't want to sway you one way or another, I'm simply stating how helpful it was for me. Good luck and just ignore them if they frustrate you. Most of the have big ego problems and are quite ignorant to many things, and they're unwilling to listen to something new or something they have not heard of or run across before.
  14. Hello everybody. I have had headaches and stiff neck and it was suggested to me by some on here to look into Lyme. Though I know quite a bit about the strep realted illnesses, I haven't really researched Lyme and coninfections that much. I had gotten blood tests for Lyme back in September and these were the results: Lyme IgG/IgM AB which was negative at <91 as well as LYME DISEASE AB, QUANT, IGM which was also negative at <91 Anything less than 91 was considered negative. Does this mean I don't have Lyme, or is there further more conclusive testing that I should ask to be performed? I'm just really confused because I can't seem to find clear information. Also, I seem to have read somewhere that you can get it from mice too???!!! I thought it was a tick borne thing Please Lyme experts, please shed some light on all my questions. Thanks.
  15. I am by no means a doctor or an expert, but aside from rheumatic fever and PANDAS, I had glomerularnephritis, which is another complication of strep, so kidney function is definitely related to strep infection. I find that when I take penicillin, I pee and pee and pee in the beginning.
  16. I just reviewed the lab work the primary care doctor had done back in September and it says Lyme IgG/IgM AB which was negative at <91 as well as LYME DISEASE AB, QUANT, IGM which was also negative at <91. Are there further tests? I'm assuming they're looking for antibodies. Are the Western Blott tests more conclusive? Are there other tests available. Thank you very much for your time.
  17. Thank you so much hopeny for your input. I read what I guess was an excerpt from the book your referred to. I'm curious if more thorough Lyme testing isn't warranted. I have an appointment with my psychiatrist on Thursday. What specific tests should I ask him to run?? My regular doctor ran "Lyme tests", which were negative. I know I have/had PANDAS with OCD, and rheumatic fever as well as glomerularnephritis, but I never really much though about Lyme and coinfections. Please fill me in on what to ask for. I'm going to tell him straight up "We both know we're not dealing with schizophrenia" as that was his initial diagnosis. I think that's his field of interest, and he's like a horse with blinders.
  18. Hello everybody. I have written on here before. I was put on penicillin 500 mg once daily by my rheumatologist and a few months ago it made me feel very ill. I felt as if I had meningitis. I had stopped it and the ill feeling went away, and when I last saw my rheumatologist about three months ago, he told me to try taking it again. I have done so but I have not felt too well lately. Not as ill as before, but I have a headache and just haven't felt well. I discontinued it about two days ago. I've just felt so ill these past few days. I have joint pains, I'm tired, brain fog, just terrible. I've been doing really well as regards OCD with the clomipramine I've been on for a few years. But this damn joint pain. I had had very low vitamin D and I felt the same way with the joint pain, and I'm wondering if my vitamin D is down again. I've been on a maintenance dose of 1000 units per day. It was so low that I was on 50,000 units per day for like over six months. Last ASO titer was about 1300, down from almost 1600. Does anyone suggest anything? I'm due to see the rheumatologist again in three more months. Should I get in touch with him? Should I call my regular doctor? Any input would be appreciated. Last time I didn't feel well, you guys suggested Lyme, but I got the regular testing for it and it was negative. I haven't ever seen the EM rash, I live in the city and I've only been camping like once almost two years ago, so I doubt I have lyme. Please advise me everybody.
  19. I had rheumatic fever and glomerularnephritis and PANDAS, and I have had most, if not all, of the symptoms you describe. Every time I'm going to get sick, I have a prodrome of hearth palpitations.
  20. I did CBT too. It really DIDN'T help me as I was too sick for it to do anything. What did help about it is that the doctor told my psychiatrist that we were dealing with OCD and not schizophrenia (which I had been saying from day 1) What DID help was Anafranil. It was a miracle for me. I'm in no way a doctor, but it sounds like what your daughter needs is the right medicine, not CBT. Your doctor should be trying any and every drug to help her since it's an issue of not eating. I of course wouldn't want to be responsible if anything bad happened, but I urge you to discuss Anafranil with your doctor. From my experience at least it was a sickness (i.e. illness) and needed medical treatment, NOT "techniques" and "therapies" and "talking" etc. I see it like an infection - you need antibiotics or medical therapy. Talking about the infection or discussing it or whatever until you're blue in the face won't heal it. I just get really frustrated sometimes because people would tell me to "try" and to "fight" etc. Your daughter needs the right med.
  21. In regards to my father's Alzheimer's/dementia, we saw also immediate improvement with the valcyclovir. Of course he's not well, but he went from sleeping almost all day to being somewhat interactive, which for him is a great improvement.
  22. I find it curious that some people are getting good results with valcyclovir because my father has dementia/Alzheimer's. He had herpes zoster and was given valcyclovir (I think 1000 mg three times per day) when we took him to the hospital, and it had a marked effect on his mental status, the very next day mind you. His doctor was a little hesitant when we brought this up at his next followup appointment, but each and every one of us noted the improvement, and she prescribed him a maintenance dose of 1000 mg once daily. It really HAS helped with his mind, and this just makes it so clear to me that the doctors really DON'T know exactly what they're dealing with as regards mental illness.
  23. I don't know what made it get better. Certainly the clomipramine made just about ALL of the OCD symptoms stop almost immediately. But as far as the eating and swallowing, I think it had stopped before I was put on the clomipramine. I asked my mom who cared for me the whole time, and she said she thinks Abilify caused it, and when the Abilify was discontinued, the swallowing issues stopped as well, but I knew what was going on in my head better than her. Sometimes I think she made connections that were not really there because she just couldn't understand all the craziness going on in my mind. I'm not so sure there was such a direct link between the eating issues and the Abilify. It may have exacerbated it, as it caused me SEVERE anxiety, but I think the eating stuff just faded away. I was psychotic, with ideas of references and all types of hallucinations of all five senses, and I think the eating thing was part of the psychosis, which resolved a long time before the rest of the OCD symptoms and thoughts did. I'm sorry I can't be more definitive and helpful, because I'm sure both you and your daughter are suffering and no one is helping, as I and my whole family was suffering when I was sick. Because this is something that happened to me as an adult (PANDAS first appeared at 12 with anorexia issues, OCD at 14, rheumatic fever at 16, glomerularnephritis at 28 with full fledged psychosis at 28 as well) I wish I could do more to help getting this thing more recognized. I want to scream - THIS IS REAL!!!!! I first read about PANDAS before the whole psychotic episode, and I was like "It's talking about me. It's my story" I worked as a medical transcriptionist for a good ten years because deep down I think I wanted to figure out what went wrong with me. When I was taken to the psychiatric emergency room with psychosis, I was telling the psychiatric nurse "I have PANDAS, it's OCD. IT ALL FITS TOGETHER AND MAKES SENSE" and NO ONE listened. I now see a rheumatologist for the joint issues and elevated ASO titers, and he told me that he wasn't aware of any relationship between OCD and strep (he works at the Hospital of the University of Pennsylvania, one of the best health centers in the country) and I just wanted to hit him and call him a dufus. They truly DON'T know a lot about this. My advice is to talk to your daughter and try to figure out EXACTLY what's going through her head in regards to eating, and then as a mother I'm sure you can find away to work through it. If my mother had given up with the silly psychiatrists that saw me (who asked if I was mentally retarded mind you, though I happen to be mentally gifted) I would probably be in an institution somewhere now with a diagnosis of schizophrenia because the doctors had their head up their anuses.
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