PIK

RHEUMATOLOGIST SAID I WAS RIGHT!!!!! He called me early this morning with my ASO titers - it was 1500!!! He gave me penicillin VK 500 mg three times per day for 10 days and then once per day for three months. I probably have frigging rheumatic fever again! They're finally starting to listen!!!!

I had posted on here with some questions. I am now 35 years old and I STRONGLY suspect (i.e. I'm certain) that I had PANDAS as an adolescent as well as rheumatic fever and glomerularnephritis. The whole gamut of strep related illnesses. There was rapid onset (overnight) OCD at age 14 and I clearly remember having strep throat at the time. I had some kind of kidney issues at 28,as well as joint issues and low-grade fever, and a doctor in Europe first brought up the issue of rheumatic fever, which got the ball rolling. I was prescribed at the time a one-month course of penciillin becasuse of elevated ASO titres at like in the mid-500's.. Instead of twice per day, I took it three times per day because I could not deal with being ill any longer. At three weeks, one night, I got up and started peeing and peeing, and the fever just dissipated. This is what leads me to believe I had glomerularnephritis. The next morning, I woke up and I was nuts. The caca literally hit the fan. I was hospitalized twice and the diagnosis ranged from bipolar to schizophrenia. Over the next three years, I was treated with EVERY antipsychotic, and it was clear that they were not dealing with schizophrenia, though they persisted because they did not want to listen to me. Finally, the psych tried Anafranil, which cleared up ALL psychiatric symptoms within 48 hours. Fast forward a few years. At 34 I started seeing a rheumatologist because of severe fatigue, joint pain etc. I brought up the suspected rheumatic fever and PANDAS etc. He did ASO titers and anti-dnase B, which were both elevated. Vitamin D was also very low at 9. I was started on vitamin D therapy of 50,000 units weekly. This did help the joint pain quite a bit. I just had my third appointment today (over the course of about one year) and I told him I was not feeling too well. He drew ASO titers again today, and I saw that the previous ASO was again elevated at 560, as well as vitamin D levels. I pushed him about starting a course of penicillin, and it's just as if he stopped listening. He was not agreeable at all. He told me to try a CPAP machine (I was diagnosed with severe sleep apnea as well) and to check vitamin D levels again. I'm so frustrated. Why don't doctors want to prescribe antibiotics in this damn country? He said he doesn't know what to make of the elevated ASO and anti-dnase B. I told him I was going to get penicillin from Europe and, despite his recommendation, take a one month course. I just have so many questions, and it doesn't seem like they know anything about PANDAS. I asked him, what happens when an adolescent with PANDAS crosses over to adulthood? Does it go away? Is it just considered OCD? He didn't know. I'm planning on getting in touch with one of the PANDAS doctors on here, but I'm afraid that they won't even see me because I'm an adult. I'm just so frigging frustrated because I had put all my hopes in this rheumatologist.

I had similar issues. I'm not a doctor, but I know I was put on Abilify 2 mg and it was just TERRIBLE. The worst med they ever tried. It caused SEVERE anxiety and akathisia. I think out of all the antipsychotics it has the highest incidence of akathisia. Please don't make any decisions based on my advice, but if you see ANY signs of akathisia, discontinue the Abilify IMMEDIATELY.

I noticed a user on here that was in Philadelphia. I am in Philadelphia. I am looking for a doctor to treat PANDAS. I think I had it and the OCD has followed me into adulthood, along with other strep-related issues. I have a feeling PANDAS doesn't limit itself to children. Anyway, any help with finding a PANDAS doctor near Philadelphia would greatly be appreciated, as I don't have a car. Thank you.

I have a high suspicion that I have/had PANDAS. My own break happened after a month's course of Penicillin. The only thing that touched my OCD and seems to have completely cured it is Anafranil (clomipramine). It really has been magic for me. You might want to try that medication.

Thank you. Where are the doctors listed on this page. I can't seem to find them.

I'm sorry - I meant HHV-7 causes pytiriasis rosea. Any information about HHV-7 and its rule in PANDAS would greatly be appreciated.

I have seen some mention of HSV-6 on here. From what I have read in the past, if I'm not mistaken, there is suspicion that this is the virus that causes pytiriasis rosea. What is strange is that I had glomerularnephritis, which I believe was strep mediated due to elevated ASO titres at the time, and concomitant pytiriasis rosea. Does anyone have any details about HSV-6 and its role in PANDAS? Why would these things occur together? What tests are available for HSV-6. I had demanded testing for it from the doctor at that time, but she told me nothing was available to her knowledge. Please enlighten me. The more I read on here, the more and more convinced I am that I have suffered from PANDAS for years.

PS - Anafranil helped me greatly.

I don't think you have anything to feel guilty about. They're just thoughts. I suffered from bad thoughts as well, but I forgave myself. Thoughts aren't sins. Sometimes we can't control our minds, or at least I couldn't. As terrible as it may sound, so what if you had thoughts about bestiality or incest etc? People not only think about these things, but actually pass to the other level and do them? So what? I think the worst thing man invented is the idea of sin. Is there really such a thing as a sin anyway? And if so, who says?

What is interesting as well is that all strep cultures done have been negative.

What is "biolfim" I forced the doctor to prescribe penicillin 500 mg twice per day for one month because I simply felt so ill and it had been prescribed to me by a doctor in Europe, whom I did not listen to. I took 500 mg three times per day because I could no longer deal with the fever and joint pain and I figured I would either kill whatever was making me ill, or I would die. I simply couldn't take it any longer and I think I actually came close to dying at one point due to kidney failure before finally convincing the doctor to prescribe penicillin. She insisted nothing was wrong, when something clearly WAS wrong. She told me the 99.7 temp I was running for months was not a fever. Furthermore, convinced I had contracted HIV, I went to see an Infectious Disease specialist, who basically told me I was a hypochondriac and proceeded to throw me out of her office.

By the way, I found the name, address, and phone number of a Dr. Susan Swedo in Bethesda Maryland. From what I understand, she is the one who postulated the whole theory of PANDAS. Does anyone know anything about her? Does she see patients?

No I did not struggle with the eating disorder the whole time at all. It started about two years before the strep exposure I am sure of, and the subsequent OCD, and gradually faded away. It's as if the whole "religion" of OCD that started at age 14 took the place of the obsessive calorie counting and body weight concerns.

I just wonder if swift lowering of ASO antibodies with antibiotics after elevated titers for years led to my body just "freaking out", which led to the poop hitting the fan. I mean, like getting worse before getting better sort of thing. If my body was used to dealing with the strep for years and then didn't know how to respond when it was gone.

I am still pretty much symptom free with Anafranil 100 mg per day and perphenazine 6 mg per day. It just seems to me that I've had every form of strep related illness (rheumatic fever, glomerularnephritis, OCD, guttate psoriasis, joint pain) with elevated ASO titers and anti-dnase B and I think it all ties in together. I just want the titers lowered to normal levels, and I've been seeing a rheumatologist for this. I just want a true diagnosis as far as my mental health is concerned. Reading everyone's story only confirms the diagnosis of PANDAS in my mind. This is something that just ruined my life from like 12 to 33, in every imaginable way. I don't believe for a minute that I suffer from schizophrenia, as has been suggested, as this does NOT go away, and certainly not with Anafranil, and it is this drug that made everything go away. I had been on very high doses of perphenazine before the Anafranil was started, and it didn't help. There was almost immediate resolution of all symptomatology with clomipramine. I just want answers, and I want a doctor that know what they're talking about. I understand that pretty much nothing was known about PANDAS in the 90's when this started, but I know they knew about it when I was hospitalized at 28, and I TOLD them that this is what I thought I had, and they did NOT listen. They wouldn't even listen to OCD. They immediately said schizophrenia and tortured me for three years on every imaginable antipsychotic, none of which helped.

I think I have/had PANDAS. Started as an anorexia type obsession with counting calories at 12. Sudden onset OCD obsessions/compulsions overnight after exposure to strep at 14. Rheumatic fever at 16, glomerlarnephritis at 27. Treated glomerularnephritis with joint pain, with one-month course of Penicillin. Went absolutely "crazy" the day after resolution of the glomerularnephritis. NOTHING worked for three years. Finally went on clomipramine (Anafranil) with complete resolution of symptoms the next day or two. Still have elevated ASO and dnase-B in the 450 range. Has anyone heard of getting worse with antibiotics? The poop really hit the fan. The OCD just turned into psychosis. Please get in touch if anyone has heard of this. I am looking into seeing a doctor familiar with PANDAS. Thanks.

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.