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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. My symptoms are the following: -OCD -Mood crashes every few weeks related to OCD -Tics -Sleep disturbances -Social anxiety -Eye problems: My eyes and eyelids start to feel like they are shaking if I try to look at someone for a few seconds straight while trying to concentrate on what they are saying (has anyone else had this??); Occasional throbbing pain above and behind my eyes or pain when moving my eyes; Dilating pupils -Digestive problems -Acid reflux -Achy muscles sometimes -TMJ -Plaque on teeth -Some numbness in arms and legs when lying down at times Things I have tried: -Bactrim (no effect in first week) -Candex (same) -Air purifier for mold -Probiotics -Infrared sauna I am doing 23andMe and am thinking of doing tests for heavy metals, mold, other autoimmune diseases, gut testing, and maybe others. If anyone has any ideas or thoughts, I would be very appreciative. I am pretty desperate to get better 😑 Any recommendations for doctors in the Northern Virginia area would also be helpful.

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 ANA but had bad BDD and developed very bad bulimia in 07 at which time I also developed movement disorder only with my arms. In 08 I had a sudden onset of severe SEVERE GAD and my heart was tachycardic 24/7/felt like I was running on adrenaline. Trying to finish 2 year degree but getting only 0-2 hrs of sleep in 24 hr period for 6 MONTHS. I could not stop heart rate and that is later diagnosed as dysautonomia: POTS (hyperadregenic). Where is gets bad is January of 09. I wake up with fatigue so severe I cannot leave my bed for an entire year. Still no diagnosis. I felt like I was dying and sleep wasn't restorative at all (aged 22?). In 2010, sudden onset of OCD which has only gotten progressively worse month after month with no relief from ssri's, benzos, atypical antipsyhotics, or anaphranil. In 2010 I am able to get out of bed but have horrible post exertional malaise (PEM) am diagnosed by 2 doctors with CFS (chronic fatigue syndrome) - see 2 well known CFS doctors who can't help me at all. Immunomodulators gave me violent reactions and Xyrem didn't help me sleep and messed with my bladder and anxiety. 2 months ago somebody got me in touch with Dr. T and was diagnosed with late onset PANS which perhaps started when I was a teenager. Labs: elevated Anti-DNase B (224) No evidence of lyme or co-infections. (I went through lyme treatment, abx for 8 months, no help whatsoever and got very bad c-diff) IgG4 low IgA2 low Basophils are absent Positive for Coxsackie A and B Mycoplasma pneu. (high titers 141) Current treatment: I was put on valtrex, first round did not help, so going for 2nd round. I take a lot of downers: klonopin, xanax, zyprexa, bystolic (beta blocker), and very low dose zoloft. Everything is in tiny doses b/c I have crazy sensitivity to meds. I also have very bizarre reaction to medications so he wants to do some kind of saliva genetic testing. Excessive daytime sleepiness horrible but stimulants crash me and make fatigue and sleepiness worse. I can't stop the ocd even though I've been in therapy for 5 years and tried many medication. It's magical thinking not germs. Obsessed with bladder and sleep. The fatigue is more correlated with CFS but as ya'll probably know, there's no treatment for it. Other than that, my dad just left us. He says I am malingering and is not willing to learn anything. I have 2 puppies that I love and adore. I do photography and have a nice flickr account going. And I was a great musician before getting sick, I can still play and write songs every so often. I am mostly stuck at home in bed with obsessive thoughts wizzing through my head 24/7. I would like to meet other adult patients also. I am grateful to find this forum and I also belong to a social media site specifically for young adults with neuro-immune illnesses - we have chats, video friday night chat,s we are starting hobby groups, and we have active forum if any interested please let me know. - Chris p.s. Has anybody found that they eventually got help with ocd b/c it's ruined my life? Step #1 - valtrex Step #2 - genetic testing (try and figure out severe sleep and med problems) Step #3 - IVIG .............would removing tonsils be good idea (I've had problems with them since I was a child, infected all the time) and antibiotics did not help and gave me bad c-diff

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 with Suprax. That initially caused even higher anxiety as the infections were stirred up by the antibiotic. Has anyone seen this happen in their own children? Any thoughts people share would be very appreciated.

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!

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 1:160 High <1:10 Coxsackie B Virus, Type 5 1:160 High <1:10 Coxsackie B Virus, Type 6 1:80 High <1:10 Immunoglobulin G, Qn, Serum 764 mg/dL 700 - 1600 IgG, Subclass 1 408 Low mg/dL 422 - 1292 M pneumoniae IgG Abs 549 High U/mL 0 - 99 Negative: <100 Indeterminate: 100 - 320 Positive: >320 Immunoglobulin E Total 3 (LOW END) IU/mL 0 - 100

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 working number for them. It is starting to get pretty frustrating. Is anyone out there currently seeing a Dr. or Therapist for TS that they can refer me to? I am in Long Beach but I can probably travel anywhere within Southern California, preferable in the LA or OC areas. Any help would be GREATLY appreciated. Thank you all, I am glad I found this forum. CMonfort

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 about the year I was bedridden unable to even lift my head b/c of deathlike fatigue and he said, "were you depressed?" So when all was said and done he wanted me to: see a psychiatrist, see a urologist, and take CFS classes on managing my fatigue. #1. I refuse to see another psychiatrist ever again. I've BEEN DOING THAT FOR THE PAST DECADE. My psychiatrist referred me b/c in 10 years NOTHING has helped. The mayo neuro claimed I was "treatment resistant" - I really hate that phrase, why not look for physiological causes instead of shoving more pills down my throat? #2. The urology dept. refused to see me. One of my ocd things is writing things down so I couldn't do a voiding diary. I tried to explain the ocd and they were really rude. I've seen tons of urologists at some of the best centers in florida anyways.............. #3. They wanted me to fly back 6 months from now and take some classes on managing fatigue. I think after 6+ years, I'm well aware of how to manage the fatigue. Was the doctor not listening when I told him that if I take a shower I have to lay back in bed b/c the post exertional malaise is SO BAD!? #4. He was a so called dysautonomic specialist, this is part of why I went, I have horrible POTS. He said it was b/c I'm inactive and lying in bed and left it at that. (the truth is, it started up when I was active and hiking then passing out in the woods on walks). WITH ALL THAT SAID, I have an appt. with Dr. Najjar in 2 weeks. Please send out positive thoughts and prayers my way. The flights nearly killed me, at one point on the plane I thought I was dying. Everything I do causes more and more fatigue and the motion from plane made me throw up. Dr. N's receptionist said he reviews all records before taking on patients so I hope that is a good thing..... that something stuck out to him or he thinks he can help or worth a try. Insurance covered mayo's appt but is not covering Najjar's. I'm worried about any tests that will be run as my mom and I don't have much money. We will try to get things covered post nyc. One thing is I've never had a lumbar puncture and I keep worrying about how much that will cost. We are trying to do what we can with insurance right now. Anybody have any tips in regards to showing up without insurance coverage, how tests will and can be covered? Thanks everyone for your kindness and friendship. Thanks to @trintiybella for you message. And powpow - for your continued support. Juliafaith.

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 ssri's and atypical anti-psychotics. I CANNOT stop the thoughts. It is 24/7 and it keeps me from resting and sleeping - both of which I need as badly fatigued as I am. The medications make me even more fatigued and sedated. I wish to be free of this ocd but don't know what to do though I have a good neuro (he is my first neuro ever) and my psych. is more than willing to work with him. I have extreme sensitives to medication along with bizarre paradoxical reactions to them. I am also on valtrex right now for positive coxsackie A and B. Next step will be genetic testing and then hopefully IVIG. I don't know what else to do. My family (excluding my mother and brother) think I am lazy and malingering but all my life I was hard working and overachieving until I became completely bedridden in 2009. I mostly feel like my brain is rotting b/c of how fatigued I am and even though I am so sleepy, I cannot just lie down and fall asleep. OCD becomes its worst when I try to rest or sleep. I merely just wish to connect with other patients and learn as I haven't met any other CFS patients with these problems. It seems foreign to most of my online friends. Thanks, Chris