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Discovered in Adulthood?
bentushar posted a topic in PANS / PANDAS (Lyme included)Hi, I'm a 19 year old man, kid, idk I'm sorta in between man and kid. Anyway I've always been a sort of weird kid, but very intelligent and high functioning. I always had some tics and weird mood behaviors, social awkwardness, etc. but was more or less a functioning member of society so my parents never saw any reason to investigate further. Over the summer I met with a therapist for the first time to help sort out attention/studying issues that I was having my first year of college and I ended up being diagnosed with ADD and Autism, I also used to be a major strep carrier, as an infant I had a severe case of scarlett fever and frequent cases of strep throughout my childhood, like multiple instances a year. Needless to say, PANDAs instantly came to mind, but I can't seem to find any info about how PANDAs affects people in adulthood. All these disorders are all new news to me, and while they explain a lot of my quirkiness, I'd really like to learn more about them and how they affect me, ya know? Any input from you guys would be greatly appreciated. Thanks, bentushar
21 Year Old with Severe OCD and ADD (PANDAS)
Shelds posted a topic in PANS / PANDAS (Lyme included)Hey Guys I thought I would start by first introducing myself as I'm new to this forum along with a basic medical history. When I was approximately 5 years old my parents witnessed me becoming sick on one particular night. They told me that I exhibited a noticeable fever and it was quite obvious that I had a high temperature. On the other hand they never recall me complaining of a sore throat however they do remember that this was the first time I ever showed symptoms of OCD. On that night while having my fever I complained of having a Green Monster in my head and my parents tell me that it was quite disturbing to hear. They tell me that they considered taking me to hospital but at the end they decided that it was best to just hold off and see how I was the next morning. I can't remember this time when I was sick and first mentioned the green monster however my parents tell me the next morning my fever was gone and I appeared "normal". However even though I don't remember this particular event I definitely vividly remember the Green Monster coming back again around the age of 5-6. He was a crystal clear image and would cause me a lot of pain and anxiety. It would constantly tell me that I was going to get sick from diseases and at the time I developed a strong worry about germs and catching illness. I remember trying to block this green monster image out of my head by covering him up with pieces of wood but he would just break through it and return. I can't remember how long he stayed around for exactly but he actually ended up leaving me for roughly 1 year. I would then say at age 7 he returned again as the same image but this time he was even worse. By that age I had heard of diseases like AIDS on T.V so the Green Monster kept telling me that I was going to get AIDS and other dangerous diseases. I remember trying so hard to get rid of him but he would just never leave my head it was as if he was stuck there frozen. I can't recall exactly how long he stayed around for this time but it could not have been longer than a couple of months and then just like before he left me. Unfortunately I never told my parents about this persistent problem because being at the age of 7 I just really never understood how serious this actually was. Anyway's after the Green Monster left me around the age of 7 for the 2nd time I ended up living a relatively OCD free life up until the age of 14 (Grade 9). From this point on to currently now I have been battling with severe Obsessive Compulsive Disorder. It would take me forever to explain the details about my OCD but basically they have changed from the previous contamination fears with the green monster to instead being centred around "Perfection". I spend hours everyday organizing personal objects into particular order and arrangement along with constant obsessive cleaning of other materials. I wish I could explain my OCD symptoms more in depth but like I said it would take forever and I'm sure you guys understand what I'm talking about. On top of my OCD diagnosis I have been diagnosed with what my doctor classifies as complex ADD which I guess could explain my poor behavioural problems in school along with early academic problems at a younger age particularly with Maths. I'm currently under a psychiatrist who is my 3rd doctor and he is treating me for Severe OCD and ADD. I have been hospitalized twice due to additional major depression and have unfortunately really never had any success over the last 7 years with improving my condition. I have been on the following previous medications: Lovan, Zoloft, Lexapro, Fluvoxamine, Buspirone, Lithium and Risperidone. At the moment I'm currently on Effexor, Ritalin, Clonazepam and Seroquel and if this does not work my doctor said he will most likely put me on Clomipramine. On top of medication I have completed an intense CBT course and Im currently seeing a personal psychologist 1 on 1. I'm happy with the treatment that I'm receiving as my doctor is fantastic however with no improvement I suspect that the real problem is not being addressed. I have done quite an extensive amount of research on PANDAS and I personally think that its quite possible I have this and it has gone untreated my whole life. Unfortunately I have been unable to find any strong leads on possible doctors in Australia who actually know what PANDAS is and even treat it. When I stumbled upon this forum when researching PANDAS I was so thankful to see such a supportive community of people dealing with similar problems. I'm writing to you all for any help and advice you can give because I'm really desperate in trying to improve my mental health. Therefore I have listed a few questions below and if anyone can shed some light on these I would really appreciate any input. 1) From this information do you guys think Its quite possible that I have PANDAS or another autoimmune disease? 2) What types of doctors/specialists treat autoimmune diseases like PANDAS ? 3) Do you guys know any specific doctors that have helped other patients with PANDAS or similar illnesses. If you have there contact information like an email that would be great and I'm not limited to just Australia my parents are prepared to fly me to the U.S if needed. 4. Just like any person I remember receiving plenty of sore throats when I was growing up but on the first night my parents saw me effected by my OCD they tell me that I never complained of a sore throat. However like I said I was sick and had a fever... Although If I did not have a sore throat does this then instantly eliminate the possibility of PANDAS? 5. If I do have PANDAS is it too late for successful treatment due to the fact that it has been so long undiagnosed ? Or is there previous adults who have been treated later in life ? Thank you so much guys for taking your time to read my story. You have no idea how appreciative I am of this and if you can help me in anyway with these questions or any extra information it would be amazing.