PIK

I never had tics but I had OCD starting age 14. I started taking antidepressants which helped until age 28 and then I got VERY sick. I am now on anafranil (clomipramine) which has helped my psychiatric symptoms. I have been well for the past 4 years. I still have elevated ASO. I am working with a rheumatologist on this.

I have suffered from OCD since age 14. I believe I have PANDAS. I dealt with OCD issues until age 28 at which point, after one month's treatment with penicillin for suspected glomerularnephritis and elevated ASO titers, I just went crazy. I had a psychotic break. I was diagnosed with schizophrenia and suffered at the hands of psychiatrists for three years, who would not listen to me. I was aware I had OCD, I told them I suspected I had PANDAS, and told them about elevated ASO, rheumatic fever, and suspected glomerularnephritis. I was tried on clomipramine at age 31 after three years of , and the psychiatric symptoms went away no joke like the next day. I presently don't believe I have any more psychiatric symptoms than the average person. I continue on clomipramine and low-dose perphenazine. I also started seeing a rheumatologist recently about suspected rheumatic fever at age 16 and rheumatism. Both ASO titers and anti-dnase B were elevated. He also diagnosed me with fibromyalgia and low vitamin D. He initially did not start me on antibiotics though. I had a recent visit with him, at which time I told him I needed antibiotics. He checked ASO again and it was dramatically elevated at about 1600. He started me on 3 time per day penicillin 500 mg for 10 days then 500 mg once a day for the next three months until I see him again. The thing is, I feel very ill. I wanted to get in to see Dr. B but have not made an appointment yet. Most recent ASO titer was still elevated at about 1400. Lyme was negative. All other tests were negative. When I questioned the doc about babesia, he said the CBC would have shown something. I think I have mastoiditis. I have had a headache going on two months, which waxes and wanes, as well as stiff/painful neck, ear fullness, pain behind my ears, and possible low-grade fever as well as fatigue. The doctor wants me to get a CT scan. My question is - I was under the impression that it was a different type of strep, streptococcus pneumoniae that causes mastoiditis, and not group A strep which causes ASO titers to rise. Would the strep of mastoiditis cause elevated ASO titers? I was afraid I had meningitis, but the doc assured me I'd either be dead by now or it would have resolved. The only plausible conclusion I can draw based on symptoms is that I have mastoiditis. But would ASO be elevated. Please enlighten me. When I asked the doctor this, he didn't give me a straight answer (maybe he didn't know). I just feel like poop.

I had OCD so bad that I had psychosis. Hallucinations of all types as well as delusions. I just went crazy one day. I had issues with OCD for years before that, but not to that extent. I also believe I have PANDAS as my ASO titers are still extremely high, as well as rheumatic fever and glomerularnephritis. I found relief from the psychiatric symptoms with clomipramine. Other SSRI's had been useful before the psychotic break, but nothing worked after. It took three years for the doctors to believe I was suffering from OCD, which I constantly reiterated to them. They were convinced I had schizophrenia and tortured me for three years with the wrong meds. No joke, a DAY OR TWO AFTER clomipramine was started, I was fine. Please consider this medicine if your son's OCD is really bad. It's the gold standard. I still have strep related issues, but the psych issues are gone for the most part. I'm now 35 years old now and had been dealing with OCD issues since at least age 14.

I was in touch with my rheumatologist who told me to go to my primary care physician. To make a long story short, I had ASO titers of almost 1600 a little over a month ago. He gave me a 10-day course of 500 mg three times per day penicillin then once a day 500 mg which I've been on. I've been feeling a headache for about a month, back of neck pain, shoulder pain, just awful. My ears hurts. Slightly vertiginous and get lightheaded when I laugh. The severity of these symptoms waxes and wanes throughout the day, but they're pretty much always there. The primary care doctor (this has been like my third visit this month) drew blood for a CBC today and wanted to test for Lyme because I told him I felt like I had meningitis. The thing is, I did go camping once months ago, and this is an endemic area, but I didn't remove any tics, and I didn't have bullseye rash. I don't know what to think at this point. Is this Lyme? Is it the penicillin slowly killing the strep and a reaction to it? Does anyone have any input please. Also, how do they test for Lyme? Is it just a blood test? Will they need to do a spinal tap (OMG this scares me so much, just the thought freaks me out). Please help everybody.

I can't stand the sound of the television, and my mother is OBSESSED with the television, keeps it on all the time, and I just want to break it.

Yes, I had the swallowing fear too when the poop hit the fan. it very much does sound like PANDAS, but I wasn't 6, I was an adult.

A doctor once told me that gargling with rock salt (is that what it's called, the natural kind?) and water kills the strep. But I don't see what the need for a "natural" remedy is. Isn't penicillin naturally derived? I wouldn't play around with strep. I've had problems with it for years because I didn't treat a strep throat which turned into rheumatic fever, glomerularnephritis, PANDAS etc. Take antibiotics.

I get tachycardia before I get sick. It's like a prodromal thing. I think it has to do with rheumatic fever/strep. I have had an echo, which was normal, but since I do believe I've had rheumatic fever, there are probably cardiac changes that are too minute to be seen by echo. The same goes for the bone/shin pain. I have pains too. I think it has to do with strep etc. Have them look at your vitamin D levels. Mine was really low and vitamin D replacement helped with the pain to some extent. It was a similar "rheumatic" kind of pain. Nonrestorative sleep. I have that to. This, along with your reflux, sounds suspicious to me of sleep apnea. I have severe sleep apnea. You will need to get a sleep study. This is often diagnosed in conjunction with rheumatism. My anorexia symptoms showed up first, at age 12, with obsessive calorie counting and body weight concerns, but my full fledged OCD didn't show up until two years later at age 14. A lot of what you described sound like my story too, and I think people just react differently. It's not as simple as looking at symptoms etc., or else everyone would be a doctor. Ask for vitamin D levels, a sleep study, and ASO and antidnase B studies to be done.

I'm sorry for continuing to post on here, but I need help. Past problems with strep and OCD. Most recent ASO titers were 1560 about two weeks ago. Anti-dnase B was in the 600 range. I am feeling so ill. The rheumatologist gave me a 10 day course three times per day of penicillin 500 mg, now on a once daily dose of 500 mg. I called him about feeling ill and he told me to go to my primary care physician. I have an appointment with primary care doctor on Monday. I am going to ask him to run ASO titers again and test for lyme. I just feel achy, my ears hurt, I feel feverish though I have not had a fever, and just fatigue and illness. I went and got an HIV test, which was negative, because that's what scares me the most. Does anyone have any other thoughts about this? As suggested by others, I too believe I should be on higher doses of antibiotics for longer. The doctor doesn't seem to agree. I am planning on getting an appointment with Dr. B in CT soon. No psychiatric symptoms because I'm on Anafranil I guess. Just frustration with the doctors and some anxiety/fear. Please help. I feel like I'm having rheumatic fever again, which I think I had when I was 16 or 17. It almost feels like meningitis because the back of my neck hurts, but I'd be dead by now if it was. Aspirin or ibuprofen seem to quell the pain for a few hours.

I certainly think so. I have had ongoing problems with OCD and anxiety and I strongly believe I had PANDAS and still do. I'm 35.

I'm fairly new to this forum and Dr. B was recommended to me. I had written down his full name but can't find and, and I'm unable to locate the post with his information. Can someone please provide me with his name because I want to call tomorrow and try to make an appointment.

I highly suspect that I have had rheumatic fever as well as all the PANDAS OCD symptoms etc. My vitamin D was severely deficient. The lower end of normal was 35 and I was at 9. I feel much better with vitamin D replacement of 50,000 units weekly and have had no ill side effects. I am on a maintenance dose now of 2000 mg per day.

Anti-dnase B was at like 600 something, and ASO was at 1560. I got treated for 10 days three times a day and now he's treating my once per day with 500 mg penicillin VK. Do you think it needs more aggressive therapy?

I think they're related too, given my experience. I am quite convinced I have/had PANDAS, and this came on first as an eating disorder, some type of anorexia at about age 12 and then morphed into OCD at 14, at which point the anorexia aspect of it stopped.

I got some further blood work done, CBC was all normal. I think ALT was a point high. The doctor said not to worry about it. Testosterone was on the low end of normal and he told me to get it retested in a few weeks. My question is - I had had an ASO titer of 1500 last week. I did have an episode of pharyngitis with swollen tonsils a few weeks ago, but it was cultured and it was non group-A strep. Isn't ASO specific to group A strep? Aside from the swollen tonsils, a few days later, I had almost a cyst/pimple like thing behind my left ear on the mastoid bone. It is this ear that was later painful, but examination did not reveal anything. Could this be a sign of the strep being in the mastoid as in mastoiditis. I don't think the damn strep is in my tonsils. I never have positive cultures. Can it be in my ears and mastoids? if it were, would examination of the ear still be normal? Are there tests specific to the mastoids, to check if the strep is there? Please enlighten me.

I had medical complaints for years with the diagnosis being "somatization" or some other nonsense here in the United States, until I saw a doctor in Greece when I was feeling ill who questioned me about having had rheumatic fever and found ASO level to be elevated. When I started researching it, I realized that I had in fact had rheumatic fever. I clearly remember erythema marginatum on my back, which I thought was just a heat rash. From there everything fell into place, I had glomerularnephritis and severe OCD which I believe was PANDAS and no such diagnosis existed then. She stared picking at the string, and I started pulling it, so the whole sweater shall I saw started unravelling. I too could not believe he did not know what rheumatic fever was, as it's on medical boards, but with the experiences I've had with doctors here, I'm assuming you can bluff your way through medical school. Some nurses, pharmacists, or mere experienced hypochondriacs seem to have more medical knowledge than some doctors.

I have had severe OCD and have been prescribed various combinations including antipsychotics (schizophrenia drugs) I think they just use them for calming/anti-anxiety properties with OCD. If you had schizophrenia he would tell you.

I posted a few threads about my history. I have had rheumatic fever, glomerularnephritis, and suspected PANDAS with severe OCD in the past. Most recent ASO titer was 1500 and I was started on penicillin VK 500 mg three times per day for 10 days. Then 500 mg once per day for three months, at which point I will see rheumatologist again. I am now on day 10. Here are some issues I have been having: 1. Slight vertigo/dizziness/headache, especially after taking penicillin. It almost feels like the back of my neck hurts, what I would imagine meningitis to feel like. I really doubt I have meningitis though as I would be dead by now. 2. Peeing A LOT and large volumes, with a strange smell. I don't know if the penicillin would make the urine smell or if it's something else. 3. Left ear pain with some moisture in my ear, especially in the morning. 4. A sore in my mouth. 5. A bruise on my arm. I don't usually bruise. I did take aspirin a few times for headache, but I don't think it was enough to cause bruising. 6. A little anxiety and maybe some elevated obsessional thinking/fears about illnesses, but I think I'm pretty okay mentally and the worry is normal. I spoke to the rheumatologist yesterday, who acted like he was doing me a favor by talking to me and he suggested I see my primary care physician Monday and to go to ER if I feel ill before Monday. Thanks, I knew that without wasting my money to call him. It seems like a lot of you have a LOT of experience with strep and PANDAS and ASO etc. Can you please help me. I do plan on seeing Dr. B as soon as possible, but I don't know what to do. The doctor I'm scheduled to see Monday doesn't know what rheumatic fever is and looked it up online when I brought it up to him. What is going on? Is it rheumatic fever again? Glomerularnephritis? Just a strep infectoin. Please help. As far as I can remember I haven't had a strep infection in a long time and all cultures have been negative.

I have my full history euder the post entitled Rheumatologist Visit. I was feeling ill and had an ASO of 1500 and was started on 3 times per day 500 mg penicillin for 10 days and then once a day for three months. Aside from peeing a lot, I seem to have a slight feeling of vertigo/inbalance. The strep seems to be in my ears or mastoids. Also, the back of my neck is achy. It almost feels like I have meningitis, but I know I don't because I'm not really photophobic, and I'm still alive. Has anyone else experienced any of these symptoms - peeing a lot, vertigo, and achy/stiff neck?

I wholeheartedly agree. I went to the ER and though I was a bit delusional, I was TELLING them I had glomerulanephritis and thought I had had PANDAS, and they just shipped me to the psych ward. I was BEGGING the ER doctor to run tests on me because I was feeling SOOOOO ill.

PLEASE help me everybody. I am very agreeable to seeing Dr. B, but I think that will take some time, and I need to do something about ASO titers of 1500 now. The rheumatologist I saw prescribed Penicillin VK 500 mg three times per day for 10 days and then 500 mg once per day for the remaining three months until I'm scheduled to see him again. I'm not satisfied either with a 10 days course. When I had suspected glomerularnephritis, it took at least three weeks of t.i.d. treatment at 500 mg for it to work. I know the penicillin is working though. I'v been on it for about a week, and I can feel it working. I know it sounds silly, but it's true. I think the strep is either in my ears or my mastoids. I can feel liquid coming out of my ears, and it smells. Plus I'm peeing A LOT. I can get as much Penicillin VK as needed since i have friends and family in Europe, where you don't needs a Rx for antibiotics. I want to stay on the three times per day dose for one full month and then go down to 500 mg twice per day for the rest of the time. What do you think of this? Is it overkill? Will I get sick from too much antibiotics? I just want to rid myself of the strep once and for all. It's been going on since I was at least 14, and I'm 35 now. I know it's there and it needs to be destroyed, and I think the doctor is just being conservative out of fear of being sued, which along with cost, and tied to it, is like the MAJOR problem with medicine in America.

I read the beginning of this thread, and I just want to add my two cents. I don't have as much experience as others, but my own personal experience. I believe I had PANDAS starting at age 14 with overnight sudden onset OCD. I also believe I had rheumatic fever at 16. At 28 I was very ill with a fever and one doctor prescribed one month's worth of penicillin 500 mg t.i.d. At one point at three weeks of treatment, I just started peeing and peeing one night, and my fever dissipated. The next morning I woke up and I was nuts. Just crazy. First they diagnosed me with bipolar, then schizophrenia. NOTHING worked except for Anafranil which was started three years later. This to me is proof that OCD was the problem. You said in one of your posts that the psychologist said your child was hallucinating. So was I. I think OCD and strep infections can do that. I had every type of hallucination, visual, auditory, sensory and most of all olfactory, but I was AWARE that they were hallucinations. I think infections can just really mess the brain up. I would think that bipolar disorder would be EXTREMELY rare in like a 3 y.o. I would keep looking for answers.

Thank you for this information, I will be sure to ask him about it.

Jesus - how high does it go?

I just got a call from the rheumatologist today. My ASO was 1500. It usually hovers around 500 to 600. It really shocked me that it was so high. Has anyone else had titers that high?