Tomorrow in Boston

Discussion in 'General Discussion' started by n3uromanc3r, Oct 10, 2012.

  1. Anonymous Member

    I'm sorry, I'm a PANDAS kid that hasn't received the cure yet.
  2. Anonymous Member

    There are two types of errors associated with detection tests: false positives and false negatives. Add the rate of both together and you get the total error rate for the test. This is a fixed number that cannot be changed. That means that when you reduce false positives you increase false negatives and vice versa.

    The major variable affecting the false positive/false negative ratio is something called the "prior probability." This is an estimation of the prevalence of the condition being detected within a given population.

    The ELISA test assumes a prior probability equal to the prevalence of Lyme disease within the general population.

    The Western Blot assumes a prior probability of an entirely different population, which is those people who have tested positive on the Elisa.

    When the Western Blot is not limited to people who have tested positive with the Elisa, nearly all positives will be false positives.

    Dr. [Redacted] is well aware of this statistical reality as is [Redacted] Labs, as the doctor and the lab director were required to master this basic level of statistical understanding as part of their training.

    Please don't hurt me for speaking out. I really am a nice person and I don't want any trouble. I've had run ins with this antivax community before and it frightened me. Recently the subtle warnings have started up again and yeah, I am scared again. I just want to take care of my patients, pet my kitties, hang with my husband, and basically be left alone.
  3. Boston Advocate,

    I infer their preferred posture is one of skepticism. They are right about docs--the whole Wray family story lacks docs owing to the gag order and that does not help the case supporters are trying to make.

    In any case, a few more people have learned about this illness and if one their kids wakes up one day with tics and OCD they'll know to rush to the doctor and get them tested for strep.
    • Agree Agree x 1
  4. Anonymous Member

    I realize I wasn't clear:
  5. Anonymous Member

  6. I understand and I agree. I wish I had the docs to provide.
  7. Anonymous Member

    I see a number of CCHR supporters among your tribe. The CCHR faults psychiatry for the over treatment of children. However you are advocating for fairly aggressive treatment without clarifying exactly whom we should treat. Should all children with some tics or compulsions be placed on medication?

    A period of obsessive-compulsive symptoms is so common among pre-pubescent children as to be accepted as a normal variant. For most the distress associated with these symptoms is manageable without medication. Of course there comes a point for some when the symptoms are too much and we do treat --e.g., when a child can no longer get to school each day. But treat or not, the vast majority of these cases will get better. Most of the time the obsessions and compulsions and the tics will fade away completely within a couple of years.

    I think PANDAS is differentiated from the transient OCD I describe above by the sudden intensity of the symptoms. So I don't think we want all parents who note some OCD to panic and to insist upon long term antibiotics. We want to limit this type of intervention to a smaller group that are more severely affected, because antibiotics are not entirely benign.
  8. Anonymous Member

    After scientifically and mathematically taking into account the ratios for false positives, false negatives, AND false neutrals, I can accurately state that WWP is composed solely of autistic pandas.

    Prove me wrong.
    • Funny Funny x 1
  9. Anonymous Member

    Do you have the one that show Lyme disease causes ticks and OCD?
  10. Anonymous Member

  11. Anonymous Member

    Ticks cause Lyme. Lyme doesn't cause ticks. :p
    • Funny Funny x 2
  12. Anonymous Member

    I rest my case.
  13. Anonymous Member

  14. Anonymous Member

  15. I aoplogize if I didn't format my quotes correctly.

    I'm not an expert in statistics and I don't believe Lyme Disease can be diagnosed based on them. Also, statistics seem much more relevant for surveillance than for diagnosis. I have a few questions for you though.

    Is this still true when they are 2 completely different types of tests? I ask because you say here 'the error rate for the test' which makes it sound as if it is 1 type of test. True, they are both antibody tests, but the ELISA doesn't distinguish the antibodies and the Western Blot does. Wouldn't there be an error rate for the ELISA and an error rate for the Western Blot?

    It would also make a difference which lab is doing the test, and which Bands are being tested on the Western Blot, as some Bands are more specific.

    There are also additional elements to diagnosing Lyme, such clinical presentation, how long the infection has been present (higher false negative for newer infections because it can take a while for antibodies to show, or older infections because they subside), if antibiotics have been taken, if there are co-infections, if the Borrelia has changed form, etc.

    But if there are biological and other reasons why the rate of reported prevalance is underestimated, then "prior probability" will be flawed.

    Within which general population? I live in a wooded area in a highly endemic area for Lyme Disease (amongst other tick-borne diseases). There will therefore be more people infected with Lyme Disease here than in an area with lower rates. So, the general population of the United States would have a much different level of prevalence overall, than the prevalence level in a highly endemic state, such as Massachusetts.

    Except that the Western Blot is a more specific type of antibody test. The ELISA catches other types of antibodies but doesn't distinguish between them. So, for example, if you have H.Pylori the ELISA might report a 'positive' result because it is another spirochete shaped bacteria, like Borrelia (Lyme). On the Western Blot, all spirochetal bacteria will be picked up on Band 41 (bacteria with a flagella), but the WB requires additional Bands to be positive for an overall positive. Some Bands mean more than others. A positive on Band 18, for example, can be nothing else except for Borrelia.

    Also, the ELISA is simply a less accurate test and should not be used for screening purposes.

    Again, clinical presentation comes into play. If you had an embedded deer tick, live in an endemic area, got a bull's eye rash, and had flu-like symptoms, you don't need to be positive on *any* test. You have Lyme Disease, even if it isn't reported for surveillance purposes.

    To say that when the WB is not limited to people who have tested positive with the ELISA nearly all will be false positives, is simply not true. Maybe from a purely statistical point-of-view, but there are way too many factors involved here.

    We should all remember, particularly the doctors "treating" Elizabeth Wray, that patients are *people* and not statistics, math equations, research papers, a case study to get credit for, etc.

    This link has some useful information:

    I don't really know what you're talking about here, especially since there are no specific names.

    Okay, I can see why you'd be afraid since overall this forum seems pretty hostile. At the very least, many of the people here don't seem to have great social skills. Perhaps, it is the nature of communicating online. I'm willing to debate but have no interest in hurting people. I'm also not sure what the antivax community has to do with any of this. But, I do wish you well.
  16. Anonymous Member

    It's not just with new people because anyone on here who makes a claim will be challenged to back it up. Sticking to that unofficial rule makes this site a pretty valuable source of information and means we can also do stuff like point members of the media to particular threads.

    Keeping that in mind, when members here say to avoid Citizens Commission on Human Rights, take it to heart and tell other PANDA families the same because your cause is the sort of thing they love to grab hold of. Once they've ingratiated themselves then it's going to be the suggestion that Dianetics and auditing can help.

    I know that's got nothing to do with Elizabeth Wray but keep it in mind because you might save other families from a lot of heartache.
  17. Anonymous Member

    Wrong. When you meet Anons in real-life you see they're pretty normal and sociable, they just don't suffer foolishness. Here's another difference - you made a sly dig whereas I'll just tell you straight that you're a rude cow.
  18. Anonymous Member

  19. Anonymous Member

    Yes each test has its own error rate.

    Let me try again to explain why your doctor is an idiot using two hypothetical Lyme tests A and B.

    A is 100% sensitive, meaning it picks up all cases, while B is 85% sensitive, meaning it will miss 15 cases if 100 truly positive people are tested.

    A is 73% specific, meaning 27 will come up falsely positive. B is 97% specific, meaning 3 false positives per 100 negative people.

    Testing 99,900 who don't have Lyme disease we get these false positives:
    A: 26,973
    B: 2,997

    Testing 100 people who do have Lyme we get these false negatives:
    A: 0
    B: 15

    The most tick infested area of CT may have 100/100,000 people with Lyme, so testing 100,000 random people from that area we would see:

    Total positives:
    A: 27,073
    B: 3,094

    Percent of the positives which are true:
    A: almost none
    B: 3%, which is still crap

    Now take all those people who came up positive with A:
    - 100 have Lyme
    - 26,973 do not.

    Running Test B gives:
    - 809 false positives
    - 97 true positives
    - 15 false negatives
    - 26172 true negatives

    Percent of the positives that are true: 97/906 = 11%
    Percent of the negatives that are true: 26,172/26,187 = 100%

    So if you are positive with A and then take B you have a 11% chance of actually having Lyme. But if you come up positive on B without taking A first, you only have a 3% chance. That is so low it tells you nothing, basically. You wasted $200 on a test for nothing.

    Mod Edit: at the request of the poster some of the data in the preceding section was corrected

    BTW, test A has the same sensitivity/specificity as the ELISA and B matches the Western Blot.


    The people here are annoying but mostly harmless. It's OSA and whatever the antivaxxers call their intelligence operatives that are the trouble. Google "Paulette Cooper."
  20. Anonymous Member

    I pinged a mod but they are asleep.

    Mod edit: at the request of the poster most of the above paragraph was deleted as the previous post was corrected. So sorry for falling asleep on the job. ;)

    I know what you are thinking: WTF, 11% is not very good. Well yeah, some tests are pretty weak. But they can help to confirm a diagnosis if a patient has a rash and a history that follows the expected pattern.

    The CCHR and the pseudoscientists make a big deal out of tests. But reality is usually not so black and white. In medicine you have to actually think and weigh a lot of variables at once. If it were all down to tests we could write computer programs to take care of patients and managed care would be reasonable rather than clunky and dumb.
  21. Anonymous Member

  22. Anonymous Member

    • Like Like x 1
  23. Anonymous Member

    Does PANDAS turn people into over dramatic twits?
  24. Anonymous Member

    You are more into the gullibility posture I take it.
  25. Anonymous Member

    Maybe someone should poon the NIH to alert them to the fact that a bunch of loonies are using their logo to look legit.

  26. Anonymous Member

  27. Anonymous Member

    PANDAS like a lot of things, is not yet ready for prime time. Scientists still need to clarify the category. There are a lot of overlapping and similar inflammatory states affecting the brain.

    There is no new monster attacking America's children. This kind of fear mongering is reckless and disruptive.
    • Agree Agree x 2
  28. Anonymous Member

  29. Anonymous Member

  30. Anonymous Member

    When I go on Facebook I see this question everywhere: "Should drug testing be mandatory for people on welfare?" Everybody says, "yes." I think this is a stealth marketing scheme for some company selling drug testing kids. Because it's an idea that sounds good on paper but less good when you start thinking about it. By framing the meme as a question it will spread on Facebook without any pesky discussions that might reveal the down side.

    I am getting the same marketing feeling about these PANDAS people. Mass parental hysteria over PANDAS will mean money in the bank for the company making strep testing kits.

    Let us review the symptoms of PANDAS, shall we?
    Percentage of the Earth's pre-pubertal children with
    - one or more of the above: I dunno, maybe 80%.
    - high titres of antibodies against strep: 100%

    So pretty soon all our kids will have PANDAS and will be taking immune calming supplements to prevent disaster.

    A diagnosis is useful if it comes with few Type 1 and Type 2 errors. Until we have a rough idea of the expected error rate associated with the PANDAS diagnosis, it will not be particularly useful in the clinic. We need the researchers to do a bit more work.

    I know this is how the CCHR thinks:
    1. Make up a diagnosis
    2. Convince people that they have this diagnosis
    3. Make up a drug to treat the bogus diagnosis
    4. Profit!

    But in reality, you can't just make up diagnoses like that. There are statistics and maths and stuff involved.
  31. Anonymous Member

    Now that Oprah's audience and influence has shrunk it is difficult to promote causes such as PANDAS testing, supplements etc. Please help anyway you can. If one your kids wakes up one day with tics and OCD, rush them to the doctor and get them tested for strep!
  32. I'm not sure what you're talking about here as I never mentioned my doctor. I'm not sure what your credentials are but I am getting my information from *many* doctors specializing in Lyme Disease and other tick-borne illnesses, including ILADS.

    Again, your background seems to be more in statistics rather than biology. The statistical analysis of these tests is more useful for surveillance and has very little to do with actual diagnosis and treatment. I appreciate your breakdown, and I do understand the gist of the argument, however there are far too many variables involved to diagnose this way.

    I'm not sure where Table 5 came from, but I'm guessing the CDC. The CDC is using these figures for surveillance purposes only and the figures here have been shown to be very different when compared with people testing positive by other more sensitive tests such as bacterial cultures (obviously more accurate than antibody tests).

    Check out this link and in particular numbers 5-8.

    These are reputable doctors who fight every day for people living with Lyme Disease and other co-infections. Some have spent a lot of their own money and have lost or risked losing their practices battling the insurance companies and the IDSA. It makes me sad that you would call these brilliant and caring doctors "idiots." Who are you that you know more?

    I'm not sure what your bottom line point is regarding the diagnosis and treatment of Elizabeth Wray. Mine is that it is not necessary to have an ELISA or to even test positive on an ELISA to be diagnosed with Lyme Disease. It would be cruel and unnecessary to withhold antibiotics because of not having an ELISA. And, btw, we don't know that EW *didn't* have one, most likely she did because it is standard practice at most hospitals and doctors' offices.

    Additionally, EW tested positive for Mycoplasma, which is a fast and easy test. Mycoplasma requires antibiotics. Mycoplasma is an opportunistic infection commonly seen with Lyme Disease.

    Just to be clear on PANDAS/PANS. PANDAS is triggered by strep antibodies and has the same biological process as Rheumatic Fever except it attacks the basal ganglia portion of the brain instead of the heart and joints. PANS is the same autoimmune process only it is has other triggers, commonly Lyme Disease and Mycoplasma. Lyme Disease, a spirochetal bacteria and "cousin" to syphilis, can also impact the brain, as is well documented with syphilis.

    Many doctors will hand out antibiotics with no proof of a bacterial infection at all. It does not make any sense at all to withhold antibiotics from EW, documented bacterial illness, and instead put her on psychiatric medication with much higher reaction issues.

    She had been diagnosed by 2 different doctors in NY, and there were highly respected specialists involved in the transfer arrangements out of BCH.

    I have personally been told by BCH that there was no one there treating PANDAS. I personally know many families who were told that they (BCH) don't believe in PANDAS/PANS or Lyme and that it is strictly a psychiatric problem. Often these families have been told their child requires psychiatic medication.

    BCH has yet to produce a single case history of a patient treated solely with psychiatric medications making a recovery. They have yet to produce one single specialist in PANDAS/PANS.

    So, what is your bottom line point? Do you suggest that EW be denied antibiotics if she hasn't had an ELISA? What if she has had one? Would you still recommend withholding antibiotics?

    A couple more quick points on EW and her antibiotic treatment. The antibiotics did not cause her to deteriorate to the condition she's in now, unable to walk, talk, etc. That happened after she started the psychiatric medication. True, the introduction of the antibiotic Cipro caused some changes, possibly a worsening, but (1) it could have been a "herx" response due to the Lyme bacteria die-off, (2) could have been a strong reaction to that particular antibiotic. There are also reports that she had recently been diagnosed with Listeria.

    I actually don't know anything about OSA or Paulette Cooper, so I don't have anything to do with them. I'm not sure what they have to do with EW. I've enjoyed our civil discussion and wish you nothing but the best. I pray you never get Lyme Disease, and that if you do you will re-think your position on its testing. Peace.
  33. Well, on that we can agree. There are many factors involved in making a diagnosis and treating *people.*

    I appreciate the warnings about CCHR. I don't know one single thing about them, and I don't know why they are repeatedly being brought up with regards to the EW situation. The people who are protesting the situation are people just like me- ordinary families from all different backgrounds who have the common connection of having a child or children with PANDAS, and/or a loved one with Lyme. I appreciate that this group strives for proof and documentation (though often don't *really* provide your own), but we don't need it for ourselves because we've lived it. In most cases, we are still living it.

    There is no publicity stunt here. There are no political motives. We just want our kids to be well, and for other families to not have to go through what we've been through. We just want EW to get proper treatment so she can get well. Believe it or don't, I don't really care. I will keep fighting for her.

    PANDAS/PANS is not far-fetched at all. Rheumatic Fever is well known and it is the same biological process. In many cases, there is a family history of Rheumatic Fever. Prove it doesn't exist.

    Unless you've lived it, you cannot imagine the horror of having a child with PANDAS/PANS or a loved one with Lyme. You can't imagine the terror of wondering if your loved one will die before you can get help. There has been a significant amount of disrespect here over the suffering of these families. It's not a joke. I understand the need for "proof positive" but a genuine interest in the research, science, family experiences, etc is not what's being posted about by many people on this forum. It is more along the lines of immature belittling.

    Clearly, this conversation will go nowhere. I could take the position that I hope you on this forum will one day be horrifically touched by one of these illnesses, however I wouldn't wish that on *anyone.* I hope that you never have to go through this, but if you do you can get the help and support you need.
  34. Anonymous Member

  35. Dear Pandas Parents:

    We have probably seen enough of this to at least concede this is a real situation, acknowledged by dox and docs. However this isn't a good place to escalate this discussion. We are chanology and our target is scientology. Sometimes members give us a heads up and we entertain other topics, but at a point we gots to say, "get a room youse guys".

    We have a wonderful activist board here which you are free to emulate in form, and our approach to both information dispersion and protest are second to none. Feel free to lurk and see how it works, our strengths include a production studio for graphics and planning forums for protests. There is also a site news area where you might learn more about the technicalities of running such a site....

    But this fruitful discussion should be taken elsewhere into it's own purview where it can get all the threads it needs and all the eyes it needs to see it.

    I wish you luck in storming the castle. But you can't count on this thread going un-domed (where we put off-topic threads that get too long or contentious) for too much longer. Best to check out wordpress or any of the free blog software to continue this conversation.
  36. Anonymous Member

  37. Thank you. I agree. I think it is an important point that you made that it was one of your members who pointed out this situation. PANDAS parents did not come to you asking for help.

    I do appreciate your offer to lurk and learn from you, however I must say that I've been rather turned off to your group by the treatment PANDAS/PANS families have received here. I'm sure you are a wonderful group doing important things, however I don't want to emulate such disrespectful behavior.

    Thank you, and I'm off to help PANDAS/PANS and Lyme families in a more positive and productive way.
  38. Longtime anon and parent here. Thanks PANDAS people, my kids don't have any problems with OCD but I will file this info away for a future checklist should they turn up with symptoms; I think my skepticism can co-exist with the consideration of more than one possible cause for whatever condition.

    Having said that, please be advised that you have reached saturation level in this thread and that persistent argument beyond this point is likely to be an aggravating waste of your time.
  39. Anonymous Member

    These are reputable doctors who fight every day for people living with Lyme Disease and other co-infections. Some have spent a lot of their own money and have lost or risked losing their practices battling the insurance companies and the IDSA. It makes me sad that you would call these brilliant and caring doctors "idiots." [/quote]

    Yes, it's very sad, even though many reputable academic institutions are ramping up their research into Lyme Disease/co-infections. Johns Hopkins University opening its Lyme Disease Research Foundation comes to mind, as an example.

    It's also well-documented via my child's brain SPECT scan. Spirochetes particularly tend to attack the brain of children who are post-pubescent but younger than 23/25 (about the time the CNS fluid/system is fully mature). In my own family's situation, my child was treated with IV antibiotics AND psychiatric meds to counter the ravages the bacteria had on the brain. We also endured several surgeries involving a myriad of organs/systems, severe (bacteria-induced) weight loss, spinal taps, blood clots/sluggish blood in the aorta, etc. Today, my child is on neither antibiotics or psych meds, and lives only with mild residual joint pain which is manageable by mild anti-inflammatory meds. I have absolutely no doubt the medical protocol saved my child's life. Finding a Lyme-literate doctor who wasn't a "quack" at the time of my child's illness was near-impossible. It's getting easier now, as physicians are increasingly becoming more educated and bucking the insurance systems to give their patients treatment needed.

    This has already been mentioned, earlier in the thread. I'd guess this is the most-likely culprit. Herxing is nasty business, but unless one has gone through it or witnessed someone going through it, it's hard to grasp the debilitating impact it has on a Lyme patient.

    You're on a forum that was initially developed as a site solely for anti-scientology activism. It's wise to heed these anons' advice regarding OSA, CCHR, Volunteer Ministers (touch-assists, anyone?) etc. Those scientology-based insidious/evil facets prey on vulnerable people, such as those in the throes of a crisis, and tend to hone in on medical issues where psychiatric medicine is involved.

    Best wishes.
  40. Anonymous Member

    Be sure to alert those involved in the Iran sub-forums, Syria sub-forums, wikileaks, OWS, etc. that they're on the wrong site. I think they've mistakenly thought this site evolved a couple of years ago to involve other, non-chanology issues.
    • Agree Agree x 1

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