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marilina

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Everything posted by marilina

  1. thank you so much dut I try now
  2. usually we send blood overseas for texts like RBC, etc....so I don't think shipping is a problem.... I am not in doubt of PANDAS but here in Italy nobody is curing PANDAS because the 99.99% of doctors does not know what PANDAS is... so we have a contact, and maybe I can to IVIGs, paying them, BUT I have to show some text results . the only proof I have is that the symptoms improve with antibiotics. I'm going to do the routine tests, but specific tests as you can do in America, here in Italy we have not. so I'm trying to do them with dr.cunningham
  3. of course Jules, but I hope some lister can answer to us
  4. please help me dr.cunningham does not answer to my e-mail anyone can say me something?
  5. http://intramural.nimh.nih.gov/pdn/pubs/pub-18.pdf
  6. I've sent an e-mail to dr.Cunningham yesterday..... can anyone say to me please if the lab DOES NOT send kit oversea? (I'm italian) thank you all
  7. we have to help dr.Wakefield sign please the petition: http://www.thepetitionsite.com/1/complaint...erning-andrew-j
  8. http://www.pnas.org/content/100/4/1996.full.pdf+html how Strep evade destruction by human immmune system....
  9. thank you EAmom
  10. thank you all.....I now read the documents recommended when I read your stories it breaks my heart .... you are fantastic parents. (the videos are not available......)
  11. can't open your link......or better ... it open this same page!!
  12. read a little 'about this, I think, given that these assumptions date from the late 90s, the examination of antigen D8/17 is an option, not the "definitive proof"absolutely. if my daughter should be positive to D8/17 antigen , this proves her predisposition and perhaps therefore it will be more credible this hypothesis as the cause of her OCD PANDAS: here in Italy are practically non-existent opportunities for caring for the PANDAS through the therapies which is discussed in this forum: I have to search for more pieces of the puzzle as possible ....and maybe this test in one
  13. http://ajp.psychiatryonline.org/cgi/conten...l/154/11/1630-b Dr. Swedo Replies Susan E. Swedo, M.D. Bethesda, Md. TO THE EDITOR: My colleagues and I appreciate the comments of Dr. Hollander and his colleagues and welcome the opportunity to provide clarification of the results described in our recent article. As we reported, D8/17 was first identified as a trait marker of rheumatic fever susceptibility and has been widely tested in a variety of patient groups and in various epidemiologic samples throughout the world. There is no evidence to suggest that attack rates of acute rheumatic fever differ between genders (although Sydenham's chorea is slightly more common among female adolescents with rheumatic fever than among male adolescents). Similarly, there has been no evidence for male-female differences in the rates of D8/17 positivity in previous investigations (1–3), nor did we find differences in relative rates of D8/17 positivity among male and female patients in our study. Thus, at present, there is no evidence to suggest that gender is related to D8/17 status. In interpreting the results of recent neuropsychiatric investigations (4), it is important to remember that D8/17 was developed as a trait marker of rheumatic fever susceptibility. Numerous rheumatic fever investigations and our increasing experience with longitudinal D8/17 assessments in patients with OCD and tic disorders (including Tourette's disorder) clearly demonstrate that D8/17 is not a state marker of streptococcal reactivity. Subjects who are initially identified as being D8/17 positive remain in that category even when their antistreptococcal titers fall to normal levels; conversely, numerous subjects have been found to be D8/17 negative despite markedly elevated antistreptococcal antibody titers, as seen in the patients with well-documented acute poststreptococcal glomerulonephritis, in which all patients had decreased complement, high anti-streptolysin O or anti-DNase B titers, and urinary signs of disease, yet had low D8/17 values (1). Because the relative percentage of D8/17+ cells remains constant among individuals across time, it is highly unlikely that the percentage of D8/17+ cells will be found to correlate with symptom severity. In fact, since D8/17 status is reported as a dichotomous variable (positive or negative), it is difficult to envision how it might be used as a "dimensional" variable. We agree with Dr. Hollander and colleagues that D8/17 is an interesting biologic marker worthy of further investigation. Studies that examine rates of D8/17 positivity in various neuropsychiatric disorders will help determine whether the marker is related only to poststreptococcal immune dysfunction (as postulated) or if it may also serve as a marker of neuropsychiatric vulnerability. The recent report by Dr. Murphy and colleagues suggests that at the least, D8/17 is able to identify an unselected group of patients with childhood-onset obsessive-compulsive disorder (4).(Swedo) --------------------------------------------------------------------------------------------------------------------------------- http://ajp.psychiatryonline.org/cgi/conten...l/154/11/1630-a Repetitive Behaviors and D8/17 Positivity Eric Hollander, M.D., Gina Delgiudice-Asch, M.D., Lorraine Simon, M.A., Concetta M. Decaria, Ph.D., Bonnie Aronowitz, Ph.D., Serge Mosovich, M.D., and Gregory Elder, M.D. New York, N.Y. TO THE EDITOR: Susan E. Swedo, M.D., and colleagues recently reported that a trait marker for rheumatic fever (D8/17) could identify children with pediatric autoimmune neuropsychiatric disorders (obsessive-compulsive disorder [OCD] and tic disorders) associated with streptococcal infections (PANDAS) and Sydenham's chorea (1). Eighty-five percent of children with PANDAS, 89% of children with Sydenham's chorea, and only 17% of healthy comparison subjects were D8/17 positive (>=12% D8/17+ cells). This is an important finding that has potentially far-reaching consequences with respect to identification of subtypes of OCD (2), understanding the relationship between Sydenham's chorea and OCD (3), defining the role of poststreptococcal autoimmune factors in OCD (4), and developing new therapeutic strategies for these disorders (2). However, alternative theoretical perspectives and additional methodological descriptions may be helpful in gauging the full impact of these important findings. The childhood-onset variants of obsessive-compulsive and tic disorders are known to have a marked male predominance (5). Thus, gender may conceivably be a factor in the expression of D8/17 positivity. Since the groups appear to differ by sex, with more male subjects in the PANDAS group (70.4%, N=19 of 27) than in the healthy comparison group (29.2%, N=7 of 24) ({chi}2=8.63, df=1, p=0.003), exploration of an overall sex effect on D8/17 positivity would be of interest. Likewise, mention of the prevalence of antistreptococcal antibodies (i.e., anti-streptolysin O and anti-DNase in the groups would be helpful in determining the relative rates of recent streptococcal infection in each of the groups. It is unknown whether D8/17 positivity is specific for PANDAS, Sydenham's chorea, and rheumatic fever or if it also occurs in other neuropsychiatric disorders. Studies of psychiatric disorders without poststreptococcal symptom exacerbation would help clarify whether D8/17 either is involved in an autoimmune response or serves as a genetic marker for select neuropsychiatric disorders. If D8/17 level were found to be correlated with repetitive behaviors as measured by Yale-Brown Obsessive Compulsive Scale severity, this might support a dimensional approach to D8/17 mediation of compulsive symptoms across traditional diagnostic boundaries. 1997 ------------------------------------------------------------------------------------- have you something updated....
  14. I don't think the d8/17 test is available anymore. The cell line died out...or something like that. Swedo mentioned this in one of her lectures. have you the link of this doc?I'm searching....
  15. this is one on the many I've found..... http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2413218/ .....................Peripheral markers The research for a possible susceptibility marker for PANDAS mostly focused on identifying peripheral markers. Among proposed peripheral markers of PANDAS susceptibility is monoclonal antibody directed against a non-HLA B-cell marker known as D8/17. This antibody is an IgM first isolated from fusions of spleen cells from mice that had been repeatedly immunized with human B-cells from patients with confirmed rheumatic fever [63,64]. In a study investigating D8/17 in PANDAS, Swedo and colleagues compared 27 children who met the diagnostic criteria with 9 patients with Sydenham's chorea and 24 healthy controls, and found a significantly higher percentage of B cells that bind D8/17 monoclonal antibody in children with both diseases than in controls (89% in Sydenham's chorea, 85% in PANDAS, 17% in controls) [65]. Another study of patients with child-onset OCD or Tourette disorder found 100% positive reactions for D8/17 in patients compared with 5% in the control group [13]. Subsequent studies investigated D8/17 positive B-cells in obsessive-compulsive spectrum disorders, as well as in other neuropsychiatric disorders. High percentages of B-cells expressing D8/17 were found in patients with autism (78%) [15], anorexia nervosa (100%–81%) [66,67], adult OCD (59%–92%) [68,69], tics (61%) [70] and trichotillomania (59%) [68]. Recent studies that used more accurate methods (flow cytometry) nevertheless failed to replicate these results [71,72]. This discrepancy may be due, at least in part, to the difference in the methods used in these studies, but also to the molecular characteristics of the antibody. The antibody that binds to D8/17 is an IgM, known to be relatively unstable and difficult to purify................ here in Italy is still possible to do the test....
  16. Anyone has checked the antigen D8/17? it is positive in many cases of PANDAS, corea, and more generally in children with autism showing repetitive behaviors........raising 100%
  17. balance GABA / glutamate is one of the most important balances to be kept under control. avoiding these foods encourages the increase of GABA resulting in a more appropriate behavior and of course a good sleep. Moreover, these substances are not good for anyone, much less to our children. It costs nothing to try, and who experienced a beneficial effect with only the assumption of GABA must try.
  18. yes she has them only on the legs petechiae may be related with low levels of platelet.......Unfortunately this problem can be triggered by the use of antibiotics. this is my doubt, the spots have appeared , I'm sure, days earlier, but during the use of the antibiotic increased. I'm waiting for the results of blood tests: to rule out problems with the liver and platelets
  19. here Vichie are some pictures: http://www.wellsphere.com/wellpage/severe-leg-bruising this is about Augmentin side effects: http://www.drugs.com/sfx/augmentin-side-effects.html All medicines may cause side effects, but many people have no, or minor side effects. Check with your doctor if any of these most COMMON side effects persist or become bothersome when using Augmentin: Diarrhea; nausea; vomiting. Seek medical attention right away if any of these SEVERE side effects occur when using Augmentin: Severe allergic reactions (rash; hives; itching; difficulty breathing; tightness in the chest; swelling of the mouth, face, lips, or tongue); bloody stools; confusion; dark urine; fever, chills, or persistent sore throat; red, swollen, blistered, or peeling skin; seizures; severe diarrhea; stomach pain or cramps; unusual bruising or bleeding; vaginal discharge or irritation; yellowing of the skin or eyes. thank you all thank you Karen: it seems that for your son petechiae and abx assumption is not correlated also...
  20. few days ago I wrote on this forum: My daughter is 17 years old. the first suspected PANDAS episode dating nine years old. Last year it started to deteriorate. When I wrote the last time I reported that the antibiotic was working, but at the same time have the appearance of petechiae on the legs: in the past had already happened a couple of times but had lasted a short time and the cause was most likely excretions of heavy metals. This time I'm afraid to give her more abx because one of the augmentin side effects may well be a problem with the number of platelets that could fall. obsessions are getting worse. I do not know what to do.
  21. AVOID: List of Excitotoxins : monosodium glutamate seasoning(s) NutraSsweet/aspartame caseinate malted barely flour soy protein glutamate seasoned salt hydrolyzed protein disodium guanylate malt extract soy protein concentrate natural flavor(s) dough conditioner hydrolyzed vegetable protein disodium inosinate malt flavoring(s) soy protein isolate natural flavoring(s) yeast extract hydrolyzed plant protein disodium caseinate malted barley/barley malt soy extract maltodextrin soy sauce hydrolyzed oat flour anything autolyzed yeast extract carrageenan hydrolyze anything bouillon texture protein broth gelatin stock sodium caseinate soup base guar gum vegetable gumspice(s) komb extract smoke flavoring(s) ajinomoto calcium caseinate whey protein concentrate plant protein extract l-cysteine chicken/pork/beef “flavoring” whey protein chicken/pork/beef “base” whey protein isolate Sources of MSG Definite Ssources of MSsG Hydrolyzed Protein or Hydrolyzed Ooat Flour Sodium Caseinate or Calcium Caseinate Autolyzed Yeast or Yeast Eextract Gelatin Glutamic Acid Monosodium Glutamate Possible Sources of MSG: Textured Protein Ccarrageenan or Vegetable Gum Seasonings or Spices Flavorings or Natural Flavorings chicken, Beef, Pork, smoke Flavorings Bouillon, Broth or stock Barley Malt, Malt Eextract, Malt Flavoring Whey Protein, Whey Protein Isolate or Concentrate soy Protein, soy Protein Isolate or concentrate Soy Sauce or Extract
  22. http://www.dramyyasko.com/Publications/491...300F4B835B.html http://www.ch3nutrigenomics.com/phpBB2/index.php
  23. my daughter is doing the Yasko procol after 4 years of biomedical treatments and she (with autism) is improving her health slowly , that's what I see.... her Strep issues started at 9 years old, and now I'm sure it was PANDAS: but here in Italy nobody can help us.....she get worse and worse and at 12 we started biomedical treatments , trying to avoid the use of drugs that she never taked and that we never want to give to her... then we find at 13 she was pyrroluric too......and with high doses of B6 she improved a lot: OCDs stopped after a few months of protocol but she had hovewer a "tendency" towards OCDs in a wave pattern that did not compromise her life and her improvements anyway.... last year (17 year old) all her classmates get sick, and she had weak flu-like symtoms without fever, without sore throat....and she fall suddenly in OCDs behaviors .... B6 was not effective this time ...... and we tryed to do something different without any knowledge about how to treat PANDAS OCDs....... Yasko's protocol focus on detox from virus-bacteria-metals, so it does treat Strep infections too, but in the general view of detox the body from virus-bacteria-metals : so we need to "educate" the body to react properly to infections ....with IMFs.... in fact what I do see in these days is that she improved a lot with Augmentin...: IMFs therapy still remain an option....
  24. see the list in: http://www.forresthealth.com/store/Chisolm...boratories.html this one is for strep http://www.forresthealth.com/store/ImmunFactor-5.html http://www.latitudes.org/forums/index.php?showtopic=2714
  25. see the list in: http://www.forresthealth.com/store/Chisolm...boratories.html this one is for strep http://www.forresthealth.com/store/ImmunFactor-5.html
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