Sascha100

Just wanna add this. Its the lyme titer. Bmpa 39 is positive. Isn‘t this band 39 and very lyme specific? The text below says that fresh lyme disease cant be excluded. Longer existing, clinically significant infection highly unlikely. Recommendation: if there are specific clinic signs ( erythems migrans/ multiple erythema, Bannwarth Syndrome) there is therapy indication needed without distinct serology. Any ideas on that? I am 99,9 % sure I wasnt bitten by a tick in the 8 years or so..

The things is I know I had strep a multiple times growing up, don't really know if it was treated with antibiotics, if so, the course was very short every time. The last time I definitely had strep was 5 years ago when I suffered from a severe Pharyngitis. I was treated with antibiotics for a few days, looking back I can't tell if my OCD got better in those few days. 6 years ago I suffered from myocarditis (heart muscle inflammation) and was also treated with antibiotics for, don't really know, maybe 10 days. So I guess it isn't that strange that my titres were low.. Again, maybe I suffer from regular OCD/BDD, but the symptoms point towards another direction

I take all your advice to my heart, thanks again! Just one question left. My ASO-titers were low, <20. I know that they don't rule out anything. But I really don't understand why they should be elevated if I have developed Pandas in my early childhood, later on probably had some flares and now haven't had an acut strep infection in the last months or so. Isn't it totally normal that it should be low in this case? That's why I don't understand why all those test should point towards anything if I haven't suffered a flare in, let's say, the last 6 months? Or are those antibodies permanently out of whack if I suffer from Pandas? Sascha

MomWithOCDSon, Again, I am so thankful for you and your advice. I guess I portrayed the topic quite accurately to the doc and told him that meds only help to a certain extent, to keep the OCD at bay. I get the gist of what you are saying and I want to keep the focus on the physical symptoms. The doctors research is about" Psychoneuroimmunology, schizophrenia, depression, movement disorders, Tourette research, global mental health" Today, I visited the house doctor but he told me those tests are way too expensive and outlandish for such a small office and that I should see a neurologist in a bigger clinical centre. So i called and said I needed some bloodwork and they immediately shut me down and told me that they can't do those tests. Maybe I should see a immunologist? It's pretty hard here in Germany to get those blood work when the docs haven't even heard of pandas and look at you with a slight glaze of disbelief... One last question: My response to Luvox seems to be extremely weird. At the beggining, it seemed to work quite well (at least the OCD was better controlled, felt more stabilized) but after I went out one night and got really drunk it stopped working for at least 6 weeks really well. Then it stabilized again and after another hangover it seemed to stop working for even a longer time. (3 months or so to feel slighty like I felt at the peak.) Furthermore, I took creatine for a while ( i go to the gym quite often) and at this time it seemed to stop working full force as well. I know it sounds really strange but it seems as if any slight deviation totally screws up the effect of the medication. After my last 2 hangovers it didn't work at full force for almost half a years. And this isn't some kind of placebo effect. Sorry, rambling again. Any clues why this can happen? Sascha <3

MomWithOCDSon, I am so dearly thankful for all your insights! I finally found someone in Germany who seems to be pretty knowledged in Pandas and has also given a lecture about the topic. He lives pretty far away from where I live so I contacted him and decribed my situation to him. He answered. This is the translation of his email: Hello, Sascha, First, there is a more precise diagnostic needed, at the family doctor at a specialist. I suggest to undertake some investigations. These are the following: Blood sampling and determination of ASO, AntiDnase, CRP, iron, ferritin, copper, ceruloplasmin, differential blood count, as well as antibody titer against borrelia, chlamydia, mycoplasma pneumoniae, bartonella,lues,herpes simplex virus, measles, mumps, early summer meningoencephalitis, interleukin-6, tumor necrosis factor, igA, igM, igG quantitative. Head MRI. Helpful would be spinal tap. Do medications work? This was the mail, did my best to translate it. Does this sound like a good start? I'm a little confused that I need antibody titers against so many infections. Maybe to rule out any possibilites? Should all those tests come up with something if I have untreated Pandas? I don't really get the idea that my strep titers should be elevated or my antibodies lower? if I don't have any infection at the moment? Sorry for the rambling and all the questions.. Tommorow is the blood sampling. Wish me the best. Sascha

MomWithOCDSon, thank you so much for you response! So sorry for the things your son went through So happy that he's in such a good place now! Problem is that I live in Germany and basically no neurologist/psychiatrist know anything about this condition here... It's horrible.. Could you give me any tips how I should approach the topic? Any blood tests that can give me hints if I had it? Sascha

Hey, folks. First of all, I want to excuse my english. I'm a german fellow Maybe I will ramble a little bit but I hope that you will get the gist. I'm a 25 years old male from Germany who has suffered from OCD since I was approximately 3-4 years old. Basically my first memories evolve OCD. Sounds not untypical doesn't it? The reason I'm worried and want your opinion on my case is the very early onset of the OCD. I have read that OCD CAN start very early. But looking back, I wonder if OCD alone can really be that aggressive and start that early on. Furthermore, I'm aware that I had a pretty severe sore throat and a cold a few times when I was around year 1,5- 2,5. I asked my mother about that. Don't know if it was step though. As i already said, my OCD started very early with symptoms "not-right feelings", touching, compulsions to get it right (staring left right left right and so on), extreme fear of losing my parents, praying, confessing and a lot more. Can't really tell if this can be still regarded as a "normal" OCD case but what surprises me is that it was pretty intense even early on. And of course it only got worse. I somehow managed to get through kindergarten but looking back now I was always a worrywart and even at that time couldn't just be "a kid anymore". In school my BDD started. It is an OCD spectrum disorder but I really haven't seen PANDAS cases with kids that developed BDD pretty early on as well. By the time of 7 or so I was already totally consumed by OCD and BDD. Was hyperaware of my looks, thought my eyes looked weird and ugly, tried to be in control of my looks, had all sort of weird obsession ( why am i attracted to woman/ why are bodyparts attractive/ do i really love my mother/ do i really like this and that/hypermorality/hyperresponsibility and 1000 more. And i am NOT exaggerating. I really had any f*** obsession you could ever have. It's crazy. I wanted to make a really long text but I realized now that it could be summarized as. Having extremely severe OCD since early childhood/ BDD since ahe 6 or 7/ derealization since age 8 or so. The derealization isn't always there but most of the time it is there, even if it is in the background. Having symptoms of executive dysfunction: I get stuck on concepts / thoughts and have a freakishly hard time to "update" my brain. I'm on Luvox 250 mg since 2 years and since I take it regularly and don't drink alcohol my OCD/BDD/derealization have really gotten much much better. 60-70 % improvement. It is really the first time in my life where I actually can enjoy some things and am not always totaly obsessed/fixated/surpressed by worries. Sorry, lots of ramble but I just had to get it out somehow. What is your take on the situation Love from Germany Sascha <3