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Found 8 results

  1. Hi everyone, I am almost 25 and just got diagnosed with PANDAS a couple months ago. When I was six, I had Sydenham’s chorea and was put on prophylactic penicillin, which I continued taking until age 22. For the past few years I have been having increasingly bad symptoms and finally just found out that I have also had PANDAS the entire time. I also scored very high on the Cunningham Panel. Unfortunately, IV steroids made me worse, and the treatment recommended to me is rituximab, which I do not want to do. I feel like I need to figure out the root cause of why I am having an autoimmune problem.
  2. Hi there, I am a 27 yr. old female who was just diagnosed by Dr. T with late-onset PANS. I wanted to talk a little bit about my history, problems I am facing now, and some of my lab work. I started having problems at age 7 with extreme overactive bladder which is now diagnosed as "IC". At age 15 sudden sharp burning pain in shins which I still have. At 18 developed anorexia nervosa, along with it came chronic tiredness and bad insomnia. I was just diagnosed with depression and treated with MANY medications and eventually ECT, none of which were helpful. I got somewhat better with
  3. My 20-year-old daughter with autism and PANS/PANDAS has, over the last few years, shifted her I nterests back to things she enjoyed as a toddler and young child. She has a renewed interest in some of the shows she watched as a younger child, like Sesame Street or the Backyardigans. Lately she has also become interested in reading the Big Red Barn, a book we read to her often when she was about 3-6 years old. At the same time, we have seen her OCD symptoms worsen and her anxieties increase. Could it somehow be linked to a PANDAS flare? She also has Lyme, which we started treating last week wit
  4. Hi: I am an adult with PANDAS/PANS and am so sick, malnourished and very low in three vitamins from food restrictions, fear of meds, so not taking any. I need a doctor who will hospitalized me on a regular (non-psychiatric ward) to help me take vitamins, figure out the underlying infections, and treat my immune system problems. Currently, I am so fearful, I cannot get out of bed for the most part. I am, however, will to travel or relocate to a Northeastern city to get help. Please suggest doctors or hospitals who may be able to help me get healthy. THANK YOU!
  5. Hi all, I received some results back today that I think might shed some light on the severe anxiety / OCD I've been dealing with for...years. Anyone out there with similar results and/or experiences?? Coxsackie A IgG/IgM Antibody Coxsackie A7 IgG 1:800 High titer Neg:<1:100 Coxsackie A9 IgG 1:1600 High titer Neg:<1:100 Coxsackie A16 IgG 1:1600 High titer Neg:<1:100 Coxsackie A24 IgG 1:1600 High titer Neg:<1:100 Coxsackie B Virus Antibodies Coxsackie B Virus, Type 1 1:320 High <1:10 Coxsackie B Virus, Type 2 1:80 High <1:10 Coxsackie B Virus, Type 3 1:16
  6. Does anyone have a good referral for a Dr. or Therapist in the Orange County or LA area? I am an adult who is 36 years old and have suffered from TS that has gotten progressively worse since I was about 11. I have read Natural Treatment for Tics and Tourette's by Sheila Rogers and consulted the resources for Doctors and therapists listed in that book and on this website. Unfortunately, I have not had any luck at all. In fact, many of the Doctors listed in those resources said they don't even treat people with TS, and some of them seem to be no longer practicing or I couldn't find a wor
  7. Hi, I've been away b/c I've been too sick and was out of town. I had my tonsils removed monday and I'm shocked at how much pain I'm in. The oxy. is only bringing it down to about a 5 and I'm still having a hard time getting any sleep b/c of ocd. Last I tried to eat, I threw up quite a bit, so I'm hungry too. I went to Rochester to Mayo clinic to see a neuro-immunologist. Before I even came he had made up in his mind that it was depression after speedily reviewing a few records even though I brought all of my records organized. Every question was if my family had depression and I talked ab
  8. I am a 27 yr old female who was recently diagnosed with PANS. I also have the diagnoses of: M.E./CFS, IC, POTS, complex regional pain syndrome, GAD + treatment resistant depression, excessive daytime sleepiness + non-restorative sleep. The ocd came on suddenly in 2010 when I was around 23 or 24. It's always been magical thinking surrounding the issues with my bladder and sleep - which are both very extreme. I've been in therapy for 5 years and tried MANY medications. I am currently on: klonopin, xanax, zyprexa, bystolic, and zoloft. I have tried MAOI's, anaphranil, and other ss
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