marilina Posted February 14, 2010 Report Posted February 14, 2010 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%
jewels Posted February 14, 2010 Report Posted February 14, 2010 marilina, What an interesting find. We have carried out lots of DAN biomedical testing, and have some surprising results. We have two chemical findings that are also present in ASD children. Dd has been given the all clear as not being on the spectrum. But we have seen horrible autistic symptoms on our very first encounter with PANDAS. We see none now unless she has an infection. Our dd can stay in PANDAS mode for up to two months before a complete remission, but during this time the ASD signs are mild. I am wondering if any parents have other stool/urine/hair etc tests that can be shared. It would be interesting to see any connections. On a positive note dd is getting better, and I need to learn more patience and get a bit more sleep. I will go and find the test results to post. Jules
jewels Posted February 14, 2010 Report Posted February 14, 2010 Stool sample analysis (taken when ill) ORGANIC ACID PROFILE YEAST/FUNGAL citramalic 3.03 HIGH carboxycitric 233.82 HIGH (should be in range of 0.0-46.0) BACTERIAL HPHPA 202.01 HIGH OXALATE RELATED oxalic 62.68 HIGH NEUROTRANSMITTERS VMA 6.67 HIGH Ascorbic indicator was high but dd was on high vit c hippuric was very high but we had a dx of dysbiosis and yeast overgrowth issues. Can't find urine test but will post it soon as it also had unusual results.
Suzan Posted February 14, 2010 Report Posted February 14, 2010 My dd7 had the organic acid test completed in 2007 and 2008 while she was very ill and before we knew about PANDAS. I pulled them out after reading your post and thought I'd share some of the results. Yeast/Fungal 4 types high in both 2001 and 2008 Bacterial HPHPA High (496.72 in 2007, normal in 2008) - lactobacillus given to break down bacteria Oxalic High (109.42 and 131.71) common to be high when yeast is a problem. I put dd on a low oxalic diet but did not notice any difference. Krebs Cycle - Succinic and Citric high (coq10 and riboflavin given to break down the succinic) Neurtransmitters VMA 8.89 (high in 2007 and high at 10.5 in 2008) HVA 8.23 (high in 2008) I can't remember what a lot of this means any more but she was on all types of supplements to try to combat this. It was our first indication of what might be wrong. She kept showing up with ASD type results but was not considered on the spectrum by any doc until we saw our current Dan! She also had mitocontrial markers. She also had low taurine, low GABA, low glutathione, low cysteine, high amonia. Now that she's gluten free and improved so much from that too, I am realizing I really should get all these tests done again to see if they have improved. I assume so since she is so much better but she is still having some issues so now you have me curious. Also, in her stool test, she had gamma strep imbalanced at +4. I can't really find what that means and I'm so curious about that now too. I only found one former post about this with similar results wanting to know what that was. Susan
Suzan Posted February 14, 2010 Report Posted February 14, 2010 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% Oh, I meant to comment on this to say that we never had this tested, how did you hear about it? Is it a marker only to show predispotion to the conditions? Susan
jewels Posted February 14, 2010 Report Posted February 14, 2010 Susan, For the oxalate issue we reduced fats in dd diet. We also added calcium citrate supplement 20 mins before every meal to reduce oxalic acid being absorbed in her tummy. We also reduced the vit c supplement by half. Struggled a bit with oxalate diet. Our HPHPA is still a problem, but need to start probiotics when her fever is down to monitor reaction. HVA 4.94 but may be up on next testing as we have lowered vit c HVA may increase with the results of taking tyrosine. I don't know if you are on that supplement. Her pyroglutamic acid was low indicating a glutathione deficiency. We are going to re-test while on abx, but we need to address yeast issues/probiotics first. Also went GF/DF after. I would be very interested in the gamma strep imbalanced result to know what it means. Marilina, can I ask how to get the antigen test please.
Buster Posted February 15, 2010 Report Posted February 15, 2010 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% My understanding is that the cell line that produced this marker died out so this test is no longer available. Dr. Swedo mentioned this in one of her lectures. Buster
EAMom Posted February 15, 2010 Report Posted February 15, 2010 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.
EAMom Posted February 15, 2010 Report Posted February 15, 2010 omg...I didn't realize Buster had already posted (with the same answer). We must have some sort of strange esp-y connection.
marilina Posted February 15, 2010 Author Report Posted February 15, 2010 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....
marilina Posted February 15, 2010 Author Report Posted February 15, 2010 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....
marilina Posted February 15, 2010 Author Report Posted February 15, 2010 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....
sf_mom Posted February 15, 2010 Report Posted February 15, 2010 In our case, I strongly feel it was the exposure to the resilient strain that caused the immune system to cave hence PANDAS (five kids at a playdate and so far 4 out of 5 are considered PANDAs not all genetically related) and not the absence of the D8/D17 antibody..... We had our twins T cells and B cells tested (2 1/2 years of age)in both our twins and they fall into normal ranges. Both have CaM Kinase of 148 and 157. http://www.latitudes.org/forums/index.php?...f=17&t=6980 The above is a very interesting article but you really have to question if it is the Bacteria or predisposition and difficult to prove as testing would have to been done very early in life. One study I've read states the predisposition is due to a exposure as early as one month old to a resilient strain that creates lesions throughout the body. We know our twins were exposed at 6 months old to Rheumatic Fever. -Wendy
marilina Posted February 15, 2010 Author Report Posted February 15, 2010 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
sf_mom Posted February 15, 2010 Report Posted February 15, 2010 Your daughter would actually have an absence of the D8/D17 antibody based on article I attached. -Wendy 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
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