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Showing content with the highest reputation on 04/30/2018 in all areas

  1. The medical community has a hard time believing Molecular Mimicry. However, when you have a child that is not able to stand, walk, has all over body pain, nonstop headache, scalp pain, hoarse voice, vocal tics and a doctor from MAYO suspects postinfectious encephalitis then it's time to figure out what the illness really is. The Cunningham Panel can determine if the antibodies are present but only needs to be done when a child is in a flare in (my personal opinion). My son was diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS) in October 2011. POTS can be caused by a virus. He had mycoplasma walking pneumonia in January 2011. Two years later testing revealed high Igg levels of mycoplasma, HHV6, Parvovirus, and a 500 strep DNASE level. My son suffered with his symptoms for several years and they did not appear overnight. The testing (Cunningham Panel) is available to prove that the antibodies do attach themselves to neural receptors. Thank goodness we have a few doctors that recognize what this illness is but it needs to be called neural receptors autoimmune encephalitis.
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  2. To a great extent, the medical science is beyond me. But as a recall, the actual magnitude of the titer count (whether anti-dnase-b or ASO) matters as some "highs" are, in the end, essentially statistically insignificant while others are truly indicative of something amiss. My recollection is that the anti-dnase-b titer test measures a strep infection exposure that was at least 4 to 6 weeks in the past; if your son's exposure was 3+ months ago, then the fact that his titer level is still "high" by his doctor's standards would suggest that, potentially, some molecular mimicry has taken place in which the strep has exchanged some molecular material with body tissue, tricking the immune system to continue to produce antibodies to attack the "invader" which is actually "self." This is my simplistic understanding of what can happen in this autoimmune condition. For the "devil's advocate" view and some decidedly more scientific responses on these topics, I would drop "anti-dnase-b" and/or "molecular mimicry" into the forum search box and then thumb through the resulting topic threads. These topics have been discussed in some detail during previous years here, but it's been a while. And it's fairly complex, at least for someone like me. But there is a wealth of information here, if you have the time and inclination to dig through it! Good luck!
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  3. Full immune panel (IgG, IgA, etc.), ASO (strep), anti dnase B (longer-term strep titer). I think methylation issues are a VERY worthwhile trail of exploration for someone your age dealing with these issues, and it appears from your signature line that you done that. So none of the interventions you're trying for the mutations has been effective? Wombat, I don't want to discourage you from exploring every available avenue, but as the mom of a now 18-year-old who was first diagnosed with OCD at age 6, didn't get a PANDAS diagnosis until age 12, responded very well to abx (brought him back from a totally dysfunctional brink), but continues to deal with some ongoing OCD and anxiety issues (though manageable) . . . I just want to encourage you to perhaps not get hung up on the testing and interventions tied to traditional PANDAS/PANs (rapid onset, pre-pubescent expression, abx, IVIG, etc.) and perhaps lean toward more "lifestyle" type interventions that will hopefully help make life more functional, more fun, and help you push away more of the OCD that interferes with your everyday life. If you do yet have underlying infection, be it lyme or strep, etc., then abx, IVIG, etc. will likely help you to an extent. (How long were the course of abx you've tried in the past? Can you get a longer-term prescription for them and journal your behavior patterns for a period of months? We found that, after the initial "burst" of palpable benefits, abx tended to yield more subtle improvements over time . . . perhaps unnoticeable to a majority of people, but by reading back through our journaling of things our DS used to do but didn't need to do anymore, or things he'd given up to the King OCD but had begun to resume as he improved). But just from our experience, having contended with OCD for as many years as you have, I would not want to lead you to believe that abx or IVIG will be a panacea -- a cure-all. And if either of them is to be effective, IMHO, given your age and the term of your dealing with this condition, I'd wager that that you would need a longer and/or more repetitive course of these medical interventions than might be the case for a younger, more recently diagnosed case (our DS took abx for about 2 years). Additionally, I would suggest dietary, supplements, ERP/CBT and perhaps even some prescription medications to help you gain more leverage over the OCD, even if only as temporary measures. In the end, the PANDAs tests and interventions turned our DS's life around, but even so, he continues to need supports. Whether that's because he was older and the anxiety/OCD was more entrenched by the time we determined the immune condition, or if it's because it's genetically part of who he is and the PANDAS just made it worse, I can't tell you. But I've made my peace with throwing everything at this monster that's at our disposal, and that methodology, in the end, has given my DS his life back. Keep fighting, keep searching and never say never! All the best to you!
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