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  1. Thanks everyone! I've just been really busy these last few days with doctors appointments and everything. I didn't get an antibiotic or steroid during the surgery. The surgeon was pretty difficult to deal with. I don't think anything I could have told him would have gotten me antibiotics. The tonsils were not cultured. I asked him to culture them but he wouldn't do it. Kind of a standoffish person. However, on the bright side of things my therapist set me up for a strep titer. Hopefully I will get that somewhere around June 6th. If my titer is elevated she said that many of her patients have had success with ivdd and she can give me a good doctor to go to. The treatment is $1,200 but I say if it works, bring it on. If my titers are not elevated she said she will assume that I grew out of the PANS/PANDAS but am still experiencing trauma from it. I'm also starting EMDR and Exposure and Response soon. This should be interesting. As of today I was put on Lexapro with a target dose of 10mg. The plan is to keep me medicated for 6 months while I complete therapy. I'm kind of scared to go off of the Prozac but it's not working so I don't see why I should be.
  2. I wish I could say that all of my symptoms were resolved after the tonsillectomy but that would be a lie. To be honest, I actually seem worse. :/ This is day 9 of post op and so far I'm discouraged! My anxiety and OCD are at an all time high but I try to attribute that to the fact that I'm in a lot of physical pain at the moment. For those of you who didn't read my first post, I just recently had my tonsils removed due to reoccurring strep. I was on Penicillin and then Augmentin before the surgery. I asked for antibiotics post op but the ENT wouldn't prescribe them because he said it looked as if the antibiotics had controlled the infection. There was no point in arguing because he was very stubborn. I honestly think I wouldn't be so anxious/wound up if I could have gotten the antibiotics for post op. However, I am trying not to get too discouraged because I think just about anyone would be mentally exhausted after such a painful procedure. On the bright side I have started seeing a cognitive behavioral therapist for exposure and response therapy. She is incredibly supportive of PANDAS/PANS and she said that although I am a relatively severe case I will probably be able to completely go off of medication in roughly 4 to 6 months. She also said she will try to set me up for some strep titers. If anyone is looking for a therapist in the Nashville TN area I would love to recommend her. Just send me a message. Overall, I haven't seen the improvement that I want. I realize however that some people get worse immediately after the tonsillectomy only to feel better later. I will continue to keep everyone updated on my progress. If anyone's child is about to get their tonsils removed I can definitely offer some tips. There are a lot of things that I wish I had known before surgery. Everything is still pretty bad right now but I'm hoping for some improvement soon!
  3. This is my 5th day on Augmentin. I've never tried zithromax but I'll remember it if the Augmentin doesn't seem to do anything. I actually was taking a probiotic but I felt worse each time that I took it. I looked on the back of the bottle and the probiotic contained a strain of strep, streptococcus thermophilus. I researched it a little and although streptococcus thermophilus is considered a positive bacteria,I just don't want to go anywhere near something with the word streptococcus in it. I'm tired of strep! So I am staying away from that particular probiotic but I will look into the one that you listed.The one I took seemed to make me worse. I take Omega 3's but probably not the quality kind. I also supplement with magnesium and a vitamin B complex but I will look into the D vitamins as well! My immune system is pretty weak.
  4. I'll admit, I'm a little bit afraid of the tricylics so I've never tried Clomipramine. I will consider it though. As of tomorrow I am probably going off of the Prozac and onto Lexapro. I'm about to the point where I'll try anything. Rowingmom, I think with this next generation of grads we will start to see a lot more acceptance of infection related psychological illnesses. If I can figure some of these connections out for myself I will be sure to make it known! There is so much about psychological health that has yet to be discovered.
  5. Thank you everyone! Worrieddadnmom, my OCD episodes are accompanied by twitching. I don't have any verbal tics but I do have muscle spasms. The more anxious I get, the worse the twitches get! However, my condition is mostly mental. I just worry and obsess about pretty much anything. I have had compulsions in the past though. Many, many panic attacks. Growing up I had terrible separation anxiety. I absolutely could not sleep alone! My first OCD episode occurred at age four when I became afraid to eat. I thought that I would choke on everything! As of now, I'm not afraid to eat but I'm incredibly underweight because I just don't want to eat. It's very interesting to see that other young adults have had success with this. It gives me hope that I might be able to figure something out! It seems like I should have made this connection by now. I have been on just about every SSRI possible, prozac, paxil, zoloft, and celexa yet I am still having these problems. I found it interesting that the ENT that I saw said that the infection in my tonsils could be leading to overactive adrenal glands. He said that many of his patients have anxiety from this and don't realize how sick they are until after the T&A. I'll update everyone after my surgery. I just happened to come across PANDAS because I am a Psychology major. I'm so glad that I did.
  6. I'm new to this forum and to PANS/PANDAS in general. I'm really just looking for any advice from anyone who has firsthand experience with this. I don't even know where to start! I'm still searching for the answers. My OCD appeared suddenly at age 4. My symptoms have waxed and waned from mild to severe over the years and I am now 19. At times my OCD would go into recession for entire years. I've just been reading all of the stories on here and there is so much that I can relate to! I know that as of now PAN/PANDAS doesn't extend to adults. However, just looking back on the time line of my life it seems more like PAN/PANDAS than regular childhood OCD. I have never been tested for Lyme but I had my fair share of tick bites as a child. My most recent OCD episode occurred shortly after one of my roommates was sick. Just overnight, all of the OCD symptoms that had been dormant were back. I was devastated to say the least. I went to the doctor and was told that I have strep and an infection in my tonsils. I was put on 500mg of Penicillin x2 a day for 10 days. I saw improvement on the last two days but ultimately crashed upon going off of the antibiotic. I'm now on Augmentin 875mg x2 a day (I weigh 100 pounds). This is my second day of Augmentin. I am also getting my tonsils removed this week as I was told that they are holding a lot of infection. So far I haven't seen any improvement with Augmentin and I'm just looking for hope! Any advice about what I could do differently? Tests I should get? I'm willing to try anything at this point. Also interested if anyone has any experience with PANDAS and tonsillectomies
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