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Where is that "LIKE" button when you need it! Linda

Lyme disease presenting as Tourette's syndrome pdf Michael Riedel, Andreas Straube, Markus J. Schwarz, Betina Wilske, Norbert Müller Lyme borreliosis is often misdiagnosed, both in adults and children.1 Central-nervous-system manifestations of Lyme disease include neurological and psychiatric symptoms.2 Although abnormal movements have been observed in Lyme disease,3 a Tourette's syndrome has not been reported. A boy at the age of 4 years developed a simple motor tic (blinking) that resolved within a year without treatment. At the age of 9 years, he developed multiple orofacial tics including shaking of the head, and several weeks later a vocal tic occurred. The tics became exacerbated under stress, as typically seen in Tourette's syndrome. Social disabilities such as loss of impulse control, social withdrawal, and worsened performance at school followed. He came to hospital 11 months after onset of symptoms. Serum IgM antibody titres against Borrelia burgdorferi measured by ELISA were not increased, although IgG antibody titres (ELISA) were increased at 58 U/mL (normal ≤ 10 U/mL) and 100 U/mL at another examination 2 weeks later. Immunofluorescence absorption test (IFT) was also increased (1:128 [normal: ≤ 1:16]). IgG immunoblot4 was positive. All results indicated an infection with B burgdorferi. Examination of the cerebral spinal fluid showed a slight lymphocytic pleocytosis. (16 cells per µL), which suggested an inflammatory reaction. The CSF:serum igG ratio for IgG antibodies was 2∙0, indicating intrathecal production of B burgdorferi-specific IgG antibodies, as occurs in neuroborreliosis.4 The boy was treated with intravenous ceftriaxone 2 g daily for 14 days. The tics improved after the sixth dose, and after the tenth dose the tics resolved completely. His social skills returned to normal. Follow-up examinations showed no recurrence of tics or other neurological or psychiatric disorder. Serum IgG antibody titres and IFT tests against B burgdorferi were 11 U/mL and 1:32 after 1 year. Rapid efficacy of antibiotic treatment followed by a decrease in Borrelia-specific antibody titres suggests that the multiple motor and vocal tics were at least partially caused by the tertiary stage of borreliosis.5 Persistence of the tics and increasing severity of the social disabilities over several months suggest that the first signs of a Tourette-like syndrome 11 months previously were an expression of an early Lyme infection. Infection with B burgdorferi should be considered in cases of Tourette's syndrome in endemic areas. Shapiro ED, Selzter EG. Lyme disease in children. Semin Neurol 1997; 17: 39-44. Kaplan RF, Jones-Woodward L. Lyme encephalopathy: a neuropsychological perspective. Semin Neurol 1997; 17: 31-37 Fallon BA, Nields JA, Parsons B, Liebowitz MR, Klein DF. Psychiatric manifestations of Lyme Borreliosis. J Clin Psychiatry 1997; 54: 263-68. Wilske B, Fingerle V, Herzer P, et al. Recombinant immunoblot in the serodiagnosis of Lyme Borreliosis. Med Mikrobiol Immunol 1993; 182: 255-70. Pfister HW, Wilske B, Weber K. Lyme borreliosis: basic science and clinical aspects. Lancet 1994; 363: 1013-16. Psychiatric Hospital (N. Müller), Department of Neurology, Klinikum Grosshadern, Ludwig-Maximilians-University, 81377 Munich, Germany and Max-von-Pettenkofer Institute, Munich © 1998 The Lancet ∙ 42 Bedford Square London WC1B 3SL UK Publication by courtesy of Prof. Dr. Norbert Müller, Munich, Germany

Lyme disease presenting as Tourette's syndrome pdf Michael Riedel, Andreas Straube, Markus J. Schwarz, Betina Wilske, Norbert Müller Lyme borreliosis is often misdiagnosed, both in adults and children.1 Central-nervous-system manifestations of Lyme disease include neurological and psychiatric symptoms.2 Although abnormal movements have been observed in Lyme disease,3 a Tourette's syndrome has not been reported. A boy at the age of 4 years developed a simple motor tic (blinking) that resolved within a year without treatment. At the age of 9 years, he developed multiple orofacial tics including shaking of the head, and several weeks later a vocal tic occurred. The tics became exacerbated under stress, as typically seen in Tourette's syndrome. Social disabilities such as loss of impulse control, social withdrawal, and worsened performance at school followed. He came to hospital 11 months after onset of symptoms. Serum IgM antibody titres against Borrelia burgdorferi measured by ELISA were not increased, although IgG antibody titres (ELISA) were increased at 58 U/mL (normal ≤ 10 U/mL) and 100 U/mL at another examination 2 weeks later. Immunofluorescence absorption test (IFT) was also increased (1:128 [normal: ≤ 1:16]). IgG immunoblot4 was positive. All results indicated an infection with B burgdorferi. Examination of the cerebral spinal fluid showed a slight lymphocytic pleocytosis. (16 cells per µL), which suggested an inflammatory reaction. The CSF:serum igG ratio for IgG antibodies was 2∙0, indicating intrathecal production of B burgdorferi-specific IgG antibodies, as occurs in neuroborreliosis.4 The boy was treated with intravenous ceftriaxone 2 g daily for 14 days. The tics improved after the sixth dose, and after the tenth dose the tics resolved completely. His social skills returned to normal. Follow-up examinations showed no recurrence of tics or other neurological or psychiatric disorder. Serum IgG antibody titres and IFT tests against B burgdorferi were 11 U/mL and 1:32 after 1 year. Rapid efficacy of antibiotic treatment followed by a decrease in Borrelia-specific antibody titres suggests that the multiple motor and vocal tics were at least partially caused by the tertiary stage of borreliosis.5 Persistence of the tics and increasing severity of the social disabilities over several months suggest that the first signs of a Tourette-like syndrome 11 months previously were an expression of an early Lyme infection. Infection with B burgdorferi should be considered in cases of Tourette's syndrome in endemic areas. Shapiro ED, Selzter EG. Lyme disease in children. Semin Neurol 1997; 17: 39-44. Kaplan RF, Jones-Woodward L. Lyme encephalopathy: a neuropsychological perspective. Semin Neurol 1997; 17: 31-37 Fallon BA, Nields JA, Parsons B, Liebowitz MR, Klein DF. Psychiatric manifestations of Lyme Borreliosis. J Clin Psychiatry 1997; 54: 263-68. Wilske B, Fingerle V, Herzer P, et al. Recombinant immunoblot in the serodiagnosis of Lyme Borreliosis. Med Mikrobiol Immunol 1993; 182: 255-70. Pfister HW, Wilske B, Weber K. Lyme borreliosis: basic science and clinical aspects. Lancet 1994; 363: 1013-16. Psychiatric Hospital (N. Müller), Department of Neurology, Klinikum Grosshadern, Ludwig-Maximilians-University, 81377 Munich, Germany and Max-von-Pettenkofer Institute, Munich © 1998 The Lancet ∙ 42 Bedford Square London WC1B 3SL UK Publication by courtesy of Prof. Dr. Norbert Müller, Munich, Germany I am not saying that everyone with tics has lyme, but it would be worth looking into. Linda

Lyme disease presenting as Tourette's syndrome pdf Michael Riedel, Andreas Straube, Markus J. Schwarz, Betina Wilske, Norbert Müller Lyme borreliosis is often misdiagnosed, both in adults and children.1 Central-nervous-system manifestations of Lyme disease include neurological and psychiatric symptoms.2 Although abnormal movements have been observed in Lyme disease,3 a Tourette's syndrome has not been reported. A boy at the age of 4 years developed a simple motor tic (blinking) that resolved within a year without treatment. At the age of 9 years, he developed multiple orofacial tics including shaking of the head, and several weeks later a vocal tic occurred. The tics became exacerbated under stress, as typically seen in Tourette's syndrome. Social disabilities such as loss of impulse control, social withdrawal, and worsened performance at school followed. He came to hospital 11 months after onset of symptoms. Serum IgM antibody titres against Borrelia burgdorferi measured by ELISA were not increased, although IgG antibody titres (ELISA) were increased at 58 U/mL (normal ≤ 10 U/mL) and 100 U/mL at another examination 2 weeks later. Immunofluorescence absorption test (IFT) was also increased (1:128 [normal: ≤ 1:16]). IgG immunoblot4 was positive. All results indicated an infection with B burgdorferi. Examination of the cerebral spinal fluid showed a slight lymphocytic pleocytosis. (16 cells per µL), which suggested an inflammatory reaction. The CSF:serum igG ratio for IgG antibodies was 2∙0, indicating intrathecal production of B burgdorferi-specific IgG antibodies, as occurs in neuroborreliosis.4 The boy was treated with intravenous ceftriaxone 2 g daily for 14 days. The tics improved after the sixth dose, and after the tenth dose the tics resolved completely. His social skills returned to normal. Follow-up examinations showed no recurrence of tics or other neurological or psychiatric disorder. Serum IgG antibody titres and IFT tests against B burgdorferi were 11 U/mL and 1:32 after 1 year. Rapid efficacy of antibiotic treatment followed by a decrease in Borrelia-specific antibody titres suggests that the multiple motor and vocal tics were at least partially caused by the tertiary stage of borreliosis.5 Persistence of the tics and increasing severity of the social disabilities over several months suggest that the first signs of a Tourette-like syndrome 11 months previously were an expression of an early Lyme infection. Infection with B burgdorferi should be considered in cases of Tourette's syndrome in endemic areas. Shapiro ED, Selzter EG. Lyme disease in children. Semin Neurol 1997; 17: 39-44. Kaplan RF, Jones-Woodward L. Lyme encephalopathy: a neuropsychological perspective. Semin Neurol 1997; 17: 31-37 Fallon BA, Nields JA, Parsons B, Liebowitz MR, Klein DF. Psychiatric manifestations of Lyme Borreliosis. J Clin Psychiatry 1997; 54: 263-68. Wilske B, Fingerle V, Herzer P, et al. Recombinant immunoblot in the serodiagnosis of Lyme Borreliosis. Med Mikrobiol Immunol 1993; 182: 255-70. Pfister HW, Wilske B, Weber K. Lyme borreliosis: basic science and clinical aspects. Lancet 1994; 363: 1013-16. Psychiatric Hospital (N. Müller), Department of Neurology, Klinikum Grosshadern, Ludwig-Maximilians-University, 81377 Munich, Germany and Max-von-Pettenkofer Institute, Munich © 1998 The Lancet ∙ 42 Bedford Square London WC1B 3SL UK Publication by courtesy of Prof. Dr. Norbert Müller, Munich, Germany http://www.tourette-gesellschaft.de/rbk2/012b_bts_lymediseaspresenting.htm I am not saying that "ALL" of the kids with tics have lyme, but it would be worth looking into. Linda

Linda, I talked to Dr. Infante by email back in Oct, & he was very nice, but he is new to this & only seems to "get" straight-forward obvious strep PANDAS not anything more complicated. My ds seems to be a PITAND. If he has strep it is hidden. He doesn't have any of the typical lyme symptoms either & all of the other Igenex tests were negative (we got a panel done, but somehow lyme got left off of it), so I'm doubtful but we're just trying to cover all the possibilities we can. By Georgetown, do you mean in DC? We are near Houston, TX & that long a distance is just not tenable right now. There's a plasmapheresis unit at Methodist Hospital here at the Houston Medical Center, but I don't know how difficult it would be to get them to agree to treatment. I would've thought all they needed was a dr willing to prescribe it & an insurance co willing to pay? ~Grace Grace, I've sent you a pm. Linda

Grace, I assume you will be seing Dr. R, so I would ask him to run the Western Blot or the CD57, and I'm sure you already know that he can also run the Ignex testing as he already has the test in his office. Have you tried seing Dr. Enfante in San Antonio? Dr. R and I have discussed PEX in the DFW area, and he is not aware of anyone that would do it for Pandas kids. He is aware of the drs at Georgetown however. Just my suggestion. Linda

Emerson, I am so sorry to hear of your loss. If you need to talk, please call me. Linda

The Cam-K test i not just for children. I think at least one adult on this board has had the test done. Linda

I sent you a message privately. Linda

Wendy, Can you tell me what brand or name the IgG powder is? Linda

Emerson, I don't know about Loving Hut, but here is a link for restaurants in your area that have gluten free foods. My son loves the Pizza from Bostons. Linda http://www.glutenfreeregistry.com/gluten-free-state-search.do?state=TX&multipleLoc=Y&inclAccommodates=N&city=Arlington

I pm'd you with names of docs in your area. Linda

I have sent you a pm. Linda

I asked Dr. C a question very similar and this was her reply: Dr. Cunningham, Seems a whole new discussion is circulating in the Pandas (among parents) world and it appears that almost all of the Pandas children are turning up positive for Lyme as well. Could it be that the antibodies in Pandas may cross react with Lyme testing? Dear Linda There could be crossreactivity with the organism causing Lyme disease but this may mean that other infections such as Borrelia burgdorferi can induce these antibodies also. Certain viral infections may also be culprit too. If he was neg on western blot, then he is probably negative for Lyme. If there is crossreactivity, then we will not be sure if it is strep or Bb or a virus. It can be complicated but the thing that is certain is the anti=neuronal antibodies and their correlation with disease. I am testing some Lyme sera and will have more definitive results this fall. The Lyme sera I have tested are in the PANDAS range. I will need to do more. Hope this helps. Linda

Regarding Bonnies Supps; are you doing both the ts plus and the mag taurate? This initially helped our son, then stopped. We are into our 2nd week of gluten free, so I'm wondering if I should retry Bonnies supps again. Thanks for your info. Linda

When you say a long time, what exactly does that mean, months? Can you give a approximate time frame? Linda

Chodnett, There is a doctor in Plano who does IVIG for Pandas, would be even closer than San Antonio or Conn. He is following Dr. K's protocol. PM me for his info. Linda

Emerson, I am in Dallas and can give you information regarding "that" particular Immunologist. He does not treat Lyme. I have sent you a PM. Linda

Nancy, So sorry to hear of your experience. As far as the procedure is concerned; during the actual pheresis, my son played video games, was on the computer and he was allowed to sit up in bed with his head elevated. He was not allowed to go to the bathroom during the pheresis, but once done, he was able to get up walk to the bathroom, go to the play room they have for the kids- in a wheel chair. Since we had our procedure, I have heard that it is not done in the same area of the hospital. The pheresis nurses are not usually at the hospital, they only come in if there is a pheresis patient scheduled. Still no excuse for this psch guy to give your daughter such a hard time. After the procedure we did receive a survey in the mail as well as a phone call asking about our experience at Georgetown. I would certainly let them know about your experience with this phych. Once we were admitted-we only saw the pheresis nurses during the 3-4 hours of the procedure, otherwise, its just the regular nurses who tend to the kids, as well as a ton of different doctors throught the 3 days. Linda

Dr. Quentin Collards name should have been removed from the list on this forum. She DOES NOT treat Pandas and asked that her name be removed from any lists. I do have names of doctors in DFW area who treat, if you would like them, please pm me. Linda

Grace There is a Immunologist that we use here in Plano (DFW area) that is now doing IVIG and he only charges for the immunogobulin. He does not have a charge for himself or his nurse, since he does it in the office. There is also another doctor in Houston-Dr. Jancovich who is located in the Medical Center, possibly Baylor, not for sure, he may be able to help you. I will pm you with more info on the doc in DFW area. Linda

Holly, I sent you a pm. Linda

New Beginings, I will pm you with info a our Immunologist and names of other doctors in the DFW area who will help with Pandas. Linda

Kamkoop I have sent you a private message. We are in the DFW area. Linda

Just a brief note on the meeting held this past Sunday and Monday at the NIH- A "White Paper" (factual right up) will be coming out in the next few months. Over 200 Pandas stories were reviewed at the conference. I have no knowledge what the paper will say. Linda