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Michel12

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  1. Hello I'm diagnosed with Pans per Dr. L and have recently seen Dr. T in Ramsay. I really like him, he seems very intelligent and kind. He ordered some blood work to look for triggers. Mostly blood work that I have already gotten done over the years. But one thing he ordered that I have not done is Courtagen genetic testing. I'm not sure on the complete reason he ordered this test although he did say that there are Pans genes. Now does Susan Swedo recognize these pans genes and are they really neccesary to have to continue treatment? It is quite expensive at around 36,000 (whew). My parents wont be paying that much im sure but it is still something you have to think over. So will this help me with treatment and will other doctors be able to read this and accept it besides DR. T? I dont want another Amen Clinic incident where we paid 3 grand for those worthless scans that no doctor will touch or look at. I just dont want to get swindled again we are paying so much as it is and I want to do things that are mainstream and neccesary. And what I mean by mainstream is that it works and is not "woo". Thank You.
  2. Yes those antibodies are on the panel and I believe we are going to do csf and blood. I have had alot of antiboides tested like lupus and anti cardio. I belive my anti cardio was a little high but the other tests that supplement it werent and the doctor said to not worry about it. Does it even really matter if they find something else? I know it will help insurance pay for all my treatment but are there any other actual autoimmune encpehlitis that cause ocd and dont have seizures?
  3. I was wondering if they do if lyme is suspected in the brain could they get at it? Or would you need IV for it to do anything?
  4. Many of you have said to rule out other autoimmune encephalitis. What kind of tests did you do? My doctor is giving me the mayo clinic autoantibodies panel.
  5. Well here are my options for treatment right now. I can go ahead and do the plasmapheresis or I can wait and try antibiotics for longer for lyme. I have been on antibioitcs for 2 years now from Minocycline to Augmention to Keflex to now Zithromax and ceftin. Dont you think this would be enough for lyme? My pdoc said plasmapheresis wouldnt work if there was infection. My lymes teszts and all coinfections have come back negative. I could wait it out but im doing terribly and the new antibiotics im on dont seem to be doing anything. Why should I chase an invisible infection?
  6. Hi I was recently prescribed naproxen over patient portal and I was wondering if anyone has used for pandas/pans. Naproxen is an NSAID I believe and I'm on meloxicam which is also an NSAID. I was on celebrex before that but my question is is there a difference? My doctor told me that they use naproxen at Stanford so does that mean it's better then meloxicam? Should I try it?
  7. I will be seeing him next month. His staff assured me he treats pandas. We are going to him for a second opinion. IF anyone who knows about him or has seen him can you please pm me in regards to how much he knows about pandas.
  8. I actually don't think we are going to do the plasmapheresis now. My parents are deciding against it.
  9. So I have spoken to Dr. L. and my parents and her both agreed to try plasmapheresis. I will be doing it for 5 days I think. I was told I might see improvement right away at 3-4 weeks and 3-4 months. My symptoms are still very severe and I wanted to here from people who have had it done. What benefits did they notice etc.
  10. Yes I have had many viral or bacterial tests and they always come back negative. Im not sure all of the ones ive gotten though but weve had a ton of bloodwork and ive had the lyme test at least 6 times. Right now I feel terrible. I feel so lightheaded im almost feverish. My head hurts and I can barley think. I'm on two antibiotics which ive been on for a yeatr so how can there still be an infection? We need to do somehting because im afrai this is going to be permanent and has been undiagnosed for so long. Also im wondering but I did the steriod at 40mg and I weigh 270 pounds do you think that it wasnt enough for my body weight? It kind of helped but benefit was not as good as when I first took minocycline I also keep perseverating about my illness and can't stop and I get os angry at my parents I yell at them. Feeling bad for so long without knowing what is oging on has drven me nuts and im sure I wasnt the longest one undiagnosed and pandas is so new but im afraid its going to be permenant. DR. L sshowed me a ptient she calls her miracle patient who was sick for 15 years who nothing worked for him until he did rituximab. In 1-3 months he was completely changed. She said that no one wants to talk about their illness after they get better. For me I find that hard to believe because I perseverate about it all day.
  11. Yes I have had many viral or bacterial tests and they always come back negative. Im not sure all of the ones ive gotten though but weve had a ton of bloodwork and ive had the lyme test at least 6 times. Right now I feel terrible. I feel so lightheaded im almost feverish. My head hurts and I can barley think. I'm on two antibiotics which ive been on for a yeatr so how can there still be an infection? We need to do somehting because im afrai this is going to be permanent and has been undiagnosed for so long. Also im wondering but I did the steriod at 40mg and I weigh 270 pounds do you think that it wasnt enough for my body weight? It kind of helped but benefit was not as good as when I first took minocycline
  12. Yes I have had many viral or bacterial tests and they always come back negative. Im not sure all of the ones ive gotten though but weve had a ton of bloodwork and ive had the lyme test at least 6 times. Right now I feel terrible. I feel so lightheaded im almost feverish. My head hurts and I can barley think. I'm on two antibiotics which ive been on for a yeatr so how can there still be an infection? We need to do somehting because im afrai this is going to be permanent and has been undiagnosed for so long.
  13. It was march 16th i think and it was my third double dose one. Nothing that is noticeable it seems antibiotics i have tried are the minocycline im on now the keflex which im on augementin which I tried and steriod which I tried for a month taper down. I have also had my tonsils out before the IVIG. If thgere is any improvement from the IVIG it is barely noticeable. So my pediatrician actually told me there was a good chance of the IVIg not working and not to get upset if it doesn't. I have had the illness for 10 years. I have heard from several doctors that Plasmapheresis is a band-aid and the illness. That only leaves rituximab but we do not want to do that. Are there any other options? I'm going on paxil now from clomipramine so I hope that works. I was on a low dose antideppresent while I was doing the IVIG do you think I had to be more stable on the antideppresent to feel the IVIG effects?
  14. It was march 16th i think and it was my third double dose one. Nothing that is noticeable it seems antibiotics i have tried are the minocycline im on now the keflex which im on augementin which I tried and steriod which I tried for a month taper down. I have also had my tonsils out before the IVIG. If thgere is any improvement from the IVIG it is barely noticeable.
  15. So I failed the IvIg it did not do anything. What do I do now? I'm on minocycline and keflex right now as far as antibiotics. Do I change them? I have seriously had it I feel I need ikmmediate treatment because this has ruined my life but I want to do the right thing. Please dont tell m e to pursue lyme.
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