PANDAS at age 14?

[PIK]

I think I had PANDAS starting at age 14. I had contact with strep then from adult sexual partner, and rapid onset of severe OCD symptoms with contamination fears and rituals. I highly doubt PANDAS was even a diagnosis then (in the 1990's) The OCD waxed and waned for years.

 

I then think I had rheumatic fever at age 16 with development of clinical depression.

 

Suspected glomerularnephritis at age 27 with joint symptoms, general illness (I thought I was dying) and persistent low-grade fever up to 99.7. ASO titers were drawn for first time and were high at about 550. Strep culture of throat was negative. No recent strep throat. 10-day course of penicillin 500 mg b.i.d. did not help symptoms, which continued for several months. ASO titers were in re-drawn and were in same range. One month course of penicillin started, 500 mg b.i.d. prescribed. I took 500 mg t.i.d. At third week, in early morning hours, I started urinating frequently and felt immediate relief of fever symptoms. The fever just dissipated.

 

Upon waking the next day, I had simply "gone crazy." Ideas of reference, quasi auditory hallucinations, olfactory hallucinations, visual hallucinations of an aura around a woman etc. Stayed up three days with no sleep. Had fears of being purposely infected with HIV via needle stick or rape. Was sent t to psychiatric emergency room in state of severe anxiety after having presented to Emergency Room requesting HART. Was prescribed medicine to sleep. Schizophrenia was deemed "unlikely."

 

Olfactory hallucinations continued for months. Some visual type hallucinations of people's eyes glowing. Paranoia, ideas of reference. Was finally admitted to psych hospital and was diagnosed with schizophrenia. No antipsychotic medications worked. Akathisia developed, which did not respond to cessation of medication.

 

Three years of akathisia, and the whole gamut of antipsychotics, nothing helped. Finally was tried on Anafranil. Complete remission of all symptoms within two days.

 

Saw rheumatologist for joint pain and fatigue. ASO titers drawn again. Still high in same range. Anti-dnase B high. Very low vitamin D levels. Started on weekly vitamin D replacement.

 

Six months later, dnase B still high. ASO in same range. Vitamin D within normal range. Continued on vitamin D therapy. Three years had passed from remission of psychotic symptoms with Anafranil. Still no OCD symptoms. No depression. No suicidal ideation. Improved joint pain.

 

I don't think I ever had schizophrenia. Psychologist doesn't think I have schizophrenia. Neuropsychiatrist doesn't know what to think. I think it was OCD all along. Can anyone shed some light on my story? I am an adult now 34 years old. Can PANDAS start as late as 14? Can it continue into adulthood? Would the merde finally hit the fan after treatment of glomerularnephritis with a month course of penicillin after years of untreated strep? Does anybody know any doctors specializing in PANDAS and strep pathology? I can't really find anything. It's all geared for pediatric patients, but I have a feeling that if it can affect children, it follows you into adulthood. I am due to see rheumatologist again soon, but I wonder if there are any doctors more specialized in this. Please help.

[Mayzoo]

Here is a list of docs who specialize in PANDAS. I am unsure if they see adults or not, but you can call the ones closest to you to inquire. My limited understanding is yes, it can follow you into adulthood, most especially if it is not treated.

 

http://pandasnetwork.org/resources/providers/

[3boysmom]

Wow amazing! I am so happy to hear that you have improved. I am sure those 3 years were pure he** for you and your family. I had a friend tell me a similar story of a collage professor that became (at age 13)mentally ill overnight and was put in an institution. A few weeks before a scheduled lobotomy he was put on antibiotics for an illness and his mental illness "issues" just "coincidently" went away and he went back home. That was probably 35 years ago.

Edited July 20, 2013 by 3boysmom