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Twomeymk4

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About Twomeymk4

  • Birthday July 7

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  • Gender
    Female
  • Location
    Northern Virginia
  • Interests
    Stay at home mom to three fabulous boys, and amazing husband and a neurotic mess of a dog.

Twomeymk4's Achievements

  1. Thanks all! We met with Dr. L yesterday and came away feeling so much better. I will write more about that when I have a few minutes, but yes, she doesn't seem to be a big Lyme "supporter" for lack of a better work. I think that she definitely believes it exists, but perhaps, that it's not as prevalent or bad as many others think...just my impression. That being said, are any of you willing to PM me with the name of some NoVa or DC pediatric LLMD? I'd love to get an Ignex test and see what his bands are now. Also love to see their thoughts on if his Lyme has truly "gone away". We liked Dr. L very much. Finally a relief to walk out of somewhere, feeling like someone listened to you and didn't want you to lock your child up or prescribe mind altering drugs. She was really good with him, and even he said this morning, he can't stop smiling remembering what she said.
  2. Dedee, Thanks so much for the response. I do agree 100% that a good LLMD's focus would not be "getting into trouble". I think in this case she was not taking new patients, only sees adults at the time, and was wary that my son's pediatrician had been named to the Loudoun Lyme Board as the "reality check", she didn't want to ask for trouble. I understand that, he was not her patient. I was. She was just helping me out, by looking at his blood work. She encouraged me to go to Dr. B in CT right away, I had no idea at the time our situation could get any worse. How wrong was I?? Hoping our appointment with Dr. L will bring answers and hope. If it doesn't, I don't know what I am going to do...feel like I've put all my eggs in this basket!
  3. Thank you all, I really appreciate your suggestions. We have never done the IgenX test, even though I know it is recommended. Two years ago he tested positive for two bands, which his pediatrician considers negative. My LLMD will not treat him, I think because she doesn't want to get in trouble. His Ped was named to the Loudoun Lyme Board as the "naysayer". This explained why a year prior he refused to even test my son for Lyme. I have had it, my dog has had it twice that we know of...didn't make a difference in his eyes. I am learning about the diet management...and certainly makes complete sense. Seems so daunting, but certainly worth it, if it works. I am also trying to research the supplements, although all seems so VERY overwhelming. I was trying to follow the conversation about the different probiotics and became overwhelmed. That happens a lot lately. I haven't pursued the steroid route, because I had heard that could be bad, if he does in fact have Lyme. Does anyone have an opinion on that? I will try the ibuprofen for the next three days, certainly couldn't hurt! I have an apt with Dr. Latimer for the middle of November. Seems so VERY far away, when your child isn't in school. I appreciate all of your suggestions in the mean time. I will look into all of them! I am very grateful for your time!
  4. Hi all, I have spent hours reading your posts over the last few days and weeks. My 12 year old son is exhibiting all of the symptoms of PANDAS. He was officially diagnosed by a LLMD here in Northern Virginia six months ago, after MY LLMD reviewed his blood work for me, and caught his Strep titers at over 2800. The test was originally ordered by a pediatric psychiatrist two years ago, when he suddenly "flipped out" in the car one day, suddenly refused to leave my side, couldn't attend school, was walking on his toes and cried all the time. His solution at the time was heavy doses of SSRIs, which lead to threats of suicide. Our son begged us to take him to a hospital, where we were told we didn't want to admit our 12 year old to a psychiatric hospital. Luckily they got us into another Dr. who helped us wean him from the SSRIs and we saw some improvement. A couple of months later, we went on spring break and he couldn't get in the car to come home. I took him to a new LLMD and asked her to humor me and run the test again. His strep titers were again over 2000. We started a course of antibiotics , Minocycline (he is allergic to amoxicillin) and within two weeks he was better. Attending school, playing lacrosse and even cried because he said for the first time his knees and ankles didn't hurt. She stopped the abx after one month and he deteriorated. Second round we did not see drastic improvement, but looking back now, it wasn't awful. In May 2013 he couldn't attend school at all. He complained of "intrusive thoughts", stomach problems, couldn't handle the chaos in class or the halls, wouldn't ride in the car, would go through phases of "Is this safe to eat?", started doing weird repetitive motions with his hands, twitches all night long, doesn't sleep, complains of restless feelings....the list goes on and on. He has NEVER in his life tested positive for strep throat. He had perfect attendance in school, since kindergarten, until last year. This is day three of school here in Virginia and he has attended for a total of an hour. He says he can't do it. What do I do? Who do you recommend? I know you are all busy with your own issues, but I don't know where to turn to. His Dr. says she will do whatever I need her to do, but I don't know what that is. The psychiatrist we are seeing just keeps prescribing heavier drugs, which make him angry and violent and suicidal. This is a child who has never even raised his voice to me. He says that all of the "positive thinking", deep breathing, etc. from therapy don't work. I am at a loss. We were turned away from the study at NIH, because we didn't have a positive throat culture. Ever. Neurologist? ENT? Infectious disease? Storch clinic in FL? Wanted to add that I tested positive for the MTHFR gene and am now taking Deplin. I feel quite a bit better. The Psych did write him a prescription also, but I haven't seen any changes...its been two weeks. So..Minocycline x2 a day Probiotics Prozac 20mg Deplin My son was a smart, athletic, popular, happy and very social kid. We just want HIM back. I will be incredibly grateful if you share your knowledge and suggestions and will in turn support others. With gratitude , Karina
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