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Michel12

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Everything posted by Michel12

  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.
  16. I have read a bit of that book. I'm located in Maryland and we were looking at a Dr. F in Rockville. IF you have any suggestions please tell. Your son's story mirrors alot of mine because that was around the same time I got sick. I would be happy to talk to him.. You can pm me. Thank you for the refferals
  17. Hi Laure I have not been tested or eval. by a llmd but we are looking for one. I have been on minocycline and keflex for a year though. My current ped is unsure if I have lyme but treats me with the minocyline. He is more consevative then a llmd is and thiinks the llmd can never be sure if I have lyme but has said I could give it a try. My blood test has always come back negative and I have gotten the western blot and had spinal fluid checked. But I guess the llmd would be able to know based on my symptoms? My doctor is just worried that the llmd might lead us down the wrong path.
  18. As far as i'm aware it is very rare to find something on an mri if your child has pandas. My mri's never showed anything. I have heard though that some people with lyme may show scattered white matter abnormalties.
  19. Hello all I had made a few posts a couple months ago about starting IVIG. I have finished my 4th month and we are going to stop I think because we did not notcie much improvement. I am feeling rather hopeless to tell you the truth. I dont think we want to try pex or rituximab. Just see if we can do things with medication. I am going to try PAxil switching from clomipramine which ive been on for five years. I cqant get a high dose on the clomipramine because of my POTS and when I did I was miserable but it did keep me stable. I really hope this paxil works for my deppresion. Its so hard because the antideppresent has to treat three things at once. My OCd, deppresion and chronic pain. It will be a miracle if it relieves all three. Ive just been wasting away in pain at home and feeling hopeless. Its hard to feel hopeful for paxil working because ect did not even work. My naseua and gastro symptoms have gotten so worse and I wonder if its being on these antibiotics for so long but alas im still failing at gluten free diet because im so deppresed and hopeless I have to eat the things I like. I saw a guy about pain and he recommended things like topamax, flexeril, etc. I might try botox in my neck(where most of the pain is at). Im just hoping I can get to a high dose with this antideppresent because I think thats going to spearhead me being stable by taking the edge and stress off. And as for the Pandas, I tried valtrex but it made my agitation and deppresion worse for some reason each time I tried it. I dont want to give up on it because I wonder if it could help my chronic fatigue syndrome too. Anybody have experiance with symptoms getting worse after valtrex? I talked to a parent who does not have pandas but took it for another reason and she got a splitting headache each time she took it. Also we may try somehting novel like an nmda receptor drug called memantine. If anyone wants to talk to me please pm me lord knows I need someone to talk too.
  20. I dont want this to effect any decision making but I have PAns and when I got the nitrous oxide for my wisdom teeth extraction I had a major flare up afterwards.
  21. Also I hear alot of people being diagnosed with different kinds of infections on this board they are using the same standard tests as I am right? Lapcorp, quest etc.
  22. Just wanted to clarify something about cunningham panel. I had really high titers with Pandas very likely so that means I have PAndas and not PAns correct? The antibodies are abnormal to strep only right? My strep has always been negative but I responded great to antibiotcs and I have had so many infectious disease tests and they have always been negative. My ped says I might have an unrecognized infection but all the other tests besides lyme usually are very solid for diagnosing right? I only hear about the lyme test having alot of false negatives. IT would really suck if all the others had the same risk. Its so hard to tell if I have an infection because I feel bad most of the time and my symptoms are so vague that it baffles the doctors. Thats why I rely on these tests but if they are coming back false negative then im getting short changed.
  23. My Doctor is Dr. L. The reason I was asking about a med change is because I have been on them for a long time and have sunk to a horrible position where I cant take the symptoms of intense head pain and agitation anymore. On the pychiatric side i'm on 2mg ativan 3x daily and its still not helping. It has caused a lot of flares and for some reason the medicine is not benefitiing me as it has before. I do not want to change the minocycline. Minocyline really helped these symptoms the early months I took it. My hope was to find another drug with the properties like minocyline's to reduce symptoms while I get the IVIG. Minocycline was not origionally given for prophylatic effect but to reduce pro-inflammatory cytokines for major deppresion. Here is some talk about minocycline and rationale. http://www.jneuroinflammation.com/content/10/1/43
  24. My Doctor is Dr. L. The reason I was asking about a med change is because I have been on them for a long time and have sunk to a horrible position where I cant take the symptoms of intense head pain and agitation anymore. On the pychiatric side i'm on 2mg ativan 3x daily and its still not helping. It has caused a lot of flares and for some reason the medicine is not benefitiing me as it has before. I do not want to change the minocycline. Minocyline really helped these symptoms the early months I took it. My hope was to find another drug with the properties like minocyline's to reduce symptoms while I get the IVIG. Minocycline was not origionally given for prophylatic effect but to reduce pro-inflammatory cytokines for major deppresion.
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