Tomorrow in Boston

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

  1. Anonymous Member

    You have to be positive on the ELISA before you do the Western Blot. That is the take home point. If your doctor is giving you the Western Blot without first making sure the ELISA is positive, he is an idiot.

    Hey guise I am getting some fair game IRL, probably because of this thing in Boston but I dont' know for sure. Please don't fire me, Anonymous, cuz then I will have no one at all.
  2. Anonymous Member

    I know this stuff about Lyme testing must be tedious. But it is crucial to understanding a method of deception used by several closely linked anti-science groups. If America cannot brush up on its maths enough to see the problem here for what it is, we are all in big trouble.


    DAN doctors skip the ELISA and go right to the Western Blot, thus convincing many patients that they have Lyme when they do not. There are several laboratories that are complicit in this deception. I wish I could name them, but they will sue me into oblivion. One of those labs sued Stephen Barrett for saying just what I am saying; not sure of the status of case right now.
  3. Anonymous Member

  4. Pique Member

    • Like Like x 2
  5. Anonymous Member

    If you attend an AutismOne conference, you will find that DAN doctors are promoting PANDAS as a cause of autistic symptoms. Here is a DAN doctor many here will recognize, Dr. Gerald Wootan, a key player in the Narconon scam:


    To make Narconon seem reasonable, Hubbard's minions invented an entire bizarro medical universe with its own specialty board certifications, such as the International Academy of Detoxification Specialists. This bizarro world is intimately involved with the autism community which has suffered a series of fear campaigns.

    First it was MMR causing "leaky gut" in autistic kids.
    Then a thimerisol-autism link.
    Then other "toxins" in vaccines were to blame.
    Then immune system damage from vaccines somehow caused autism.
    Then Dr. [Redacted] connected all the dots and described the "4 A syndrome, A standing for autism, ADHD, asthma, and allergies

    Now DAN patients routinely are diagnosed with all this at the same time: leaky gut, toxin overload, chronic yeast infections, chronic Lyme disease, PANDAS, and vitamin deficiencies due to leaky gut. They are prescribed "detox" regimens, crazy diets, and supplements.

    Most of the interconnected businesses involved in this subculture are not run by Scientologists. But Scientologists and their WISE chiropractor friends have a real presence. Also Moonies.

    Should this DAN universe be of interest to chanology? I don't know. I wish it were of interest to the FBI and the FDA and many state boards of medicine.
  6. I will thank the members of this forum for alerting us to the possibility of CCHR etc. exploiting the Elizabeth Wray situation to advance their own agenda. Pandas parents have enough to deal with without worrying about whether they've become a tool of Scientology. This is a valuable service, particularly as many parents receive good care for Pandas from psychiatrists and do use psychiatric drugs as supplemental medication.

    For the person who wrote all children have occasional tics and OCD and high strep titers, you are wrong about the strep titers. In fact, many children who culture positive for strep do not get elevated titers.

    Kids do get transient tics like eye blinking or OCD type fears like being worried about monsters under their beds. Pandas parents are not overdramatizing such normal childhood behaviors. But when your child suddenly over a course of a few days starts engaging in such bizarre behaviors you think he might have a brain tumor, it's way past time to check for strep.
  7. Anonymous Member

    I was exaggerating a little to make a point. Kids get strep throat a lot. That means that there will be a lot of false positives if you rely on a high strep titer to diagnose PANDAS.

    Also some dox:
    Perhaps so. But I would be happier if you'd make it clear that antibody titers are not the appropriate test. Antibiotics can be dangerous and we don't want to hand them out too often.
  8. Anonymous Member

  9. Testing for strep means do a rapid strep test, followed by a strep culture if the former is negative. It is also useful to take strep titers (ASO) at the same time. One test by itself has little meaning. But a repeat test that shows a doubling or more of the titers is indicative of an active infection of strep, which can hang out in places besides the throat--the sinuses, for example.
  10. Anonymous Member

    I got it from this paper:

    I used the 100% sensitive figure mostly to make the math easier. If I were trying to match the clinical setting we're talking about --no recent tick bite but some neurological complaints-- I would have picked the 95% figure.

    Do you know what ILADS used to come up with the 65% sensitivity for the ELISA?

    Well if these heroic doctors run the Western Blot on someone with no signs of recent infection, just some neurological complaints, a positive result is going to be wrong 97% of the time. I think that is dumb. Why would anyone spend $200 on something like this?
    I am Anonymous.
  11. Anonymous Member

    No way.
    • Funny Funny x 1
  12. Anonymous Member

    I hate wearing all this tinfoil, but I am telling you, this being at-cause over facts within medicine is a wedge strategy.

    The other wedge strategy everybody already knows about: getting Intelligent Design creationism into public schools. But America's biology teachers were pretty bad ass and they did not let that happen.

    Doctors, in contrast, have been pussies. They started letting the moonbats into medical schools a decade ago.

    Thanks to people like the PANDAS fighters and Romney, medical science is now like Tinkerbell. You need only close your eyes, wish real hard, raise a fist in the air, and poof! Truthiness!
  13. Anonymous Member

    Samefag here, sorry, hit reply too soon.

    Wedge strategy. That means getting inside a place you aren't allowed. The getting in part is not the end game. The end game is far more awesome. I would describe it but people would say "Godwin." It's always fucking Nazis as the example of people drunk on some vision of purification, vibrant health, and an ideal civilization. We just don't have a good number two for that.
  14. Anonymous Member

    Just so you know I'm not bullshit about this effort to get New Age woo into medical science:
  15. Anonymous Member

  16. Anonymous Member

    Last comment then I will stop drinking and posting:

    Y'alls have been conditioned to vote for stuff. Vote for this, vote for that. Click like if you agree. Make a sign and stand outside a building to assert your rights.

    But GTFO with that shit when you are weighing the risks and benefits of medical interventions.

    For starters you PANDAS people need calculators. You are advocating for health policies, not just for what you want as a quirky human with needs.

    Every policy decision means dead people. Somebody dies. No way around it. It is up to you do do the arithmetic correctly so you know exactly how many people you will be killing in a given population.

    Every number on the page represents a wonderful, unique human being, and you need to make sure you get each one in its proper category: false positive, true positive, false negative, true negative. Don't fuck up! This is human life we are counting, not your taxes.

    Don't wave away statistics like it is only for pointy heads. That is your job, knowing the numbers in all four boxes. And no copying from the guy sitting next to you. Do the math yourself so we can check it against what other people get.
  17. Anonymous Member

    ^btw just the poetry of my despair and rage, Pandas. I will not actually make you do arithmetic because that is mean. But if you get pushy, you do need the numbers to back you including error bars, sorry. Otherwise you are stupid bullies.
  18. Anonymous Member

    This kind of medical practice depends on the patient committing to life-style changes. Changes in diet and exercise and weight loss are proven to lengthen life. Spirituality also can improve quality of life (quality of life measured by interviews.)
    Some of it is not woo.
  19. Anonymous Member

    Diet, exercise, weight loss, and spirituality as defined by the patient have always been a part of medicine. The woo people pretend to own those things so they have something that isn't crazy sounding to talk about.
  20. Anonymous Member

    I think it is cute that the Pandas think of Boston Childrens and Mass General as crosstown rivals.
  21. Anonymous Member

    Who wants to bet me that Dr. Jenike's calendar is going to be super booked for the next couple of months
    • Like Like x 1
  22. Anonymous Member

    Are you sure about this? Maybe she is not released because continued care seems necessary and everyone needs to wait for the hearing before the judge to determine what is best for Elizabeth.

    Maybe the doctors are horrible people, that might be one explanation for their baby snatching behavior. But maybe there are other explanations worth considering?

    Imagine a Scientologist parent who is told that her child's autism is not caused by or made worse by environmental toxins, as she had been told by her Scientologist doctor, Dr. Woo.

    But Dr. Woo had handed her the lab printouts with numbers representing high levels of mercury and other scary things. He warned her that "mainstream" pediatricians are not open minded about toxin problems because their education is funded by drug companies who don't like natural medicine.

    Dr. Woo, OT-V, is a big doner to IAS and has a photo on his wall with Tom Cruise beside him. On his web site there is a message board where several dozen patients talk about how lucky they are to have an "independent" doctor who doesn't uncritically swallow what the government tells him. They talk about how their children never showed progress until they started with Dr. Woo. They compare notes about their daily ups and downs as they tweak a little less gluten and sugar and a little more CalMag. Most of all they provide each other with moral support as they face rejection from the medical establishment which is only interested in big profits.

    Now one of these parents has to go to the hospital with her seriously ill child and the doctors there are strongly implying that Dr. Woo is a quack. What do you imagine is going to happen next? ARC break with the hospital or with Dr. Woo?

    The mother will think of Peggy or Sue or Julie on the message board and what each would say. Those women are dedicated and empowered and they would never allow themselves to be railroaded by one of BigPharma's brainwashed jerks.

    An ARC break between parents and hospital doctors means CPS will be called. That's the system we have because we don't want doctors overriding parents without some third party getting involved.

    Cult doctors groom their patients to serve as personal armies to fight their colleagues. That is why there is an old saying among physicians, "The only thing worse than quacks are their patients."

    Maybe the understanding doctors are pandering to your relatives because that is easier than telling them honestly about the status of the evidence as published in the medical literature. Of course I have no way of knowing, but the possibility seems a reasonable one to consider.
    • Like Like x 2
  23. Anonymous Member

    Hospitals do not render opinions; individual doctors do that. Among the Harvard programs it is likely that the relevant doctors are coming and going from more than one hospital in the Boston area.

    The standard black PR formula --i.e., "find the target's natural rivals and cause a fight"-- looks ham handed in this instance.
  24. fishypants Moderator

  25. Anonymous Member

    Welcome to the forum.

    This Anon at least doesn't have an opinion on PANDAS - I know too little about it.

    I've been glad to see you linking to reputable sources, e.g.

    Here on this forum, we like documentation. I'd like to see more documentation concerning this case, e.g. the court transcript.

    There seems to be an assumption here - and elsewhere in this campaign - that the doctors aren't acting in good faith, or giving their best medical judgement.

    That they have a hidden agenda - whether that's "not invented here", or victimising parents, or whatever.

    I've seen no evidence that that's the case.

    I've also seen no evidence that the parents in this case (or related cases) are more equipped to diagnose their children than the doctors.

    I don't understand why the parents don't simply ask for a second opinion. Or if they have asked for and received one, why they don't accept it.

    Drug side-effects do not mean that the drug itself is inappropriate. The angle "look what these drugs have done to my child! they must be the wrong treatment!" is fundamentally misguided. Long-term benefit needs to be considered, as well as short-term harm.

    I'm a parent myself, and I'm sure it's awful to see your child suffering in any way. But blaming that suffering on the child's doctors - and therefore refusing to take medical advice - doesn't seem sensible or rational.

    If the parents are refusing to take medical advice - not just from one doctor but from any doctor - then it sounds to me as though the parents are acting irrationally, and the court is right to take power over the child's medical care away from them.

    just my $0.02.

    • Agree Agree x 1
  26. Anonymous Member

    A parents job is to keep their children safe. When their kids are horribly ill they suffer from feelings of guilt. In order to protect their children they "take on" the visible target. Nurses in the burn unit or NICU know about this. Pediatric oncologists know this. ER staff know this. It's a terrible thing to have a sick child and watch them get worse.
    • Agree Agree x 1
  27. Pique Member

    No it isn't. But you do have to sign up for the dome. If you're old enough. ;)
  28. Hope I did the quote thing right.
  29. Anonymous Member

    So do I.
  30. Anonymous Member

    You seem to have more info about this situation than most. From where I sit it is hard to know what happened.

    There is a dynamic in teaching hospitals related to supervision and consultation. Actually, this dynamic may be relevant to any situation where there exists a chain of command. Goes like this: the guys in the trenches are trying to decide whether to do A, which is legally risky but will make the patient happy, or B, which is by the book but will make the patient angry. They turn to their more experienced supervisor who is not directly involved for some guidance. Nine times out of ten the supervisor will pick B. This is just how the world seems to work.
    • Agree Agree x 1
  31. Anonymous Member

    How do you know she has an infection?
  32. Anonymous Member

    Not really. It's hard to tell which bits are you speaking. If the quote thing is a problem then make it a different colour or something.
  33. Anonymous Member

    'Pandas parents' meaning 'parents who are convinced that their children have pandas, whatever the doctors say'?

    or 'parents of children diagnosed with pandas by a doctor'?
  34. fishypants Moderator

    ah! no, I'm old enough to know that I don't have enough time or patience for the dome.
  35. Anonymous Member

    Pandas Mom has said that there are two doctors that gave Elizabeth the diagnosis of PANDAS before she went to Boston Childrens, so the problem is more systemic.

    In the 1980s these two physicians would have been brought before the board of medicine in NY for combining speculation with evidence and sending patients on lengthy, dangerous wild goose chases [I realize I am speculating about who these doctors are and what they used to come up with PANDAS as a diagnosis; but let us not forget that they gave this child at least two other diagnosis as well --chronic Lyme and leaky gut requiring a gluten free/casein free diet; dollars to donuts there are moar dx]. This case suggests that the medical profession is having difficulty policing itself since that time.
  36. Anonymous Member

    I'd be interested to know how the different doctors compare - as in, presumably the ones at the hospital are specialists (?) - and the one (or ones) who gave the original diagnosis of PANDAS - are they primary care physicians? (?)

    If so then if seems reasonable for the specialists to argue that their own knowledge of the area is greater than the primary care physician's. Because it likely is. That's what makes them specialists.

    The doctor(s) who made the PANDAS diagnosis - are they a doctor that parents specifically go to if they're looking for a diagnosis of PANDAS?

    Or are they the family's regular doctor?

    Not to say that if they're 'PANDAS doctors' then that would make the diagnosis incorrect necessarily, just for info. For example, here in the UK we had (for a while) one doctor - a court-ordered expert witness - who believed that practically everybody involved in a car crash suffered from whiplash, and another doctor - also an expert witness - who believed that whiplash didn't exist. So both of them made a healthy living appearing in court to contradict one another.

    Just to be clear, are we talking about a diagnosis by real qualified doctors who went to medical school, or by 'woo-woo' alternative practitioners such as chiropracters etc - ??

    Are any of the doctors who made the original diagnosis part of this PANDAS campaign which seems to exist?
  37. Anonymous Member

    You may have heard of Dr. Andrew Wakefield's fan club, "Generation Rescue," which promotes an annual conference called, "Autism One." Most of the speakers at this conference are anti-vax and half insane but occasionally they seduce one or two reasonable doctors from prestigious programs to give a talk.

    From a free speech perspective, there's no problem having an academic at the podium who doesn't agree with the group's political mission. But from a public education perspective, the good doctors name will be used to to make antivax seem legit and a few children will be harmed as a result. This PR strategy is much like Scientology's strategy of getting naive politicians to show up at a ribbon cutting for one of their Ideal Orgs.


    You do have to wonder about any doctor who associates with Jenny McCarthy and Andrew Wakefield's circus at this point in time, but I digress.

    The antivax movement is a fluid complex of several ever-rebranding subgroups and not as clean a target as Scientology, with its core fronts hardened years ago in the IRS agreement. Allah be praised for that fixation of Narconon, TWTH, ABLE, Applied Scholastics, WISE, etc. Imagine how much more difficult our work would be if we had isolated shell after shell after shell to investigate.
  38. Anonymous Member

    DAN doctors in New York from:

    There are three DAN doctors at one address, so I'm kind of guessing that the "two doctors" that gave Elizabeth the diagnosis of PANDAS are there. The Wrays live in Bumfuck NY and aren't likely to drive for hours to clinics spread across the state. It is possible they went to some other state like VT or MA.
  39. Anonymous Member

    BTW, if you look into this cult (yes it is a cult) you should save the useful web pages you find because they disappear. Already there is a shift away from using the brand "DAN!"

  40. Anonymous Member

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