Hi
I am a 27 year old male who lives in Toronto, Ontario, and I have had a PANDAS infection since I was around twelve years old. During the eighth grade I came down with severe OCD symptoms, self harming behavior and just general misery that lasted for years and destroyed every aspect of my life.I was unable to go to high school, and spent most of life indoors for the next several years. The ordeal had a negative effect on my personality and resulted in me having a difficult time communicating with other people. When I was 16 years old, I got a diagnosis for OCD which allowed me to obtain the SSRI fluoxetine, which helped a great deal with the depression/OCD symptoms. At around 20, the OCD symptoms began to subside and I was able to go back to school/college. However, after graduating I was unable to find any kind of lasting employment, no one wanted me.
Around two and a half years ago, I started experiencing OCD and an Inability to sleep which once again started destroying my life. I lost around 20 lbs and the ability to control my thoughts. Although I wasn't thinking clearly at the time, I was able to do enough research online to conclude that I had a PANDAS infection and have had it since I was a small child. It is my belief that I was injected with a step infection which triggered my existing PANDAS autoimmune condition, which took me about a year to get under control.
After the attack, I did everything in my power to get a diagnosis with PANDAS. It took many visits with a psychiatrist in order for me to convince him to get me a blood test for the strep antibody. By the time I received the blood test I was feeling significantly better and was not surprised by the test results being negative. Since I was completely lost on what to do next, I had no choice but to give up any hope of getting a diagnosis for PANDAS
Now I believe that my inability to sleep and urinary frequency issues are caused by my PANDAS condition. Every night I get up around 5 or 6 times to go to the washroom and often have a difficult time going back to sleep again afterwards. I also have many mood swings and a difficult time concentrating which is either caused by the condition or is a side effect of having to live with the condition for so many years.
Living with this illness has destroyed most of what I have tried to do with my life. From finding employment, to holding friends or even maintaining some basic hobbies, everything has just ended very poorly for me. Nothing I have done in the past 15 years has ever gone as planned, it has just been one setback after another. I can't believe the things I have had to live through, it is painful and depressing just thinking about.
If anyone has any advice on what I should do in order to get a diagnosis or improve my life feel free to leave a comment/s
Yes, I am confident that my problems revolve around a PANDAS infection
Thanks