Virtual Skeptics #21 (2 Jan 2013)

January 2, 2013

This week on the Virtual Skeptics:

– Bob pokes dead things with a stick
– Eve looks into her crystal ball and sees elves
– Sharon loves rocks, strange sounds and giant eyeballs
– and Tim talks about the “Year of the Skeptool”

This Week’s Panel:

Bob Blaskiewicz – CSI’s Conspiracy Guy web columnist, blogger for Skeptical Humanities and Swift Blog contributor
Eve Siebert – Editor and blogger at Skeptical Humanities and Skepticality contributor
Sharon Hill – Editor of Doubtful News and author of the CSI’s Sounds Sciencey web column
Tim Farley – JREF fellow and creator of What’s the Harm.net and the Skeptical Software Tools blog

Host: Brian Gregory – Bon vivant, chapeau connaisseur

Bob’s Links:

Spitzer’s original paper: http://link.springer.com/article/10.1023/A%3A1025647527010

Spitzer’s Retraction:
http://link.springer.com/content/pdf/10.1007%2Fs10508-012-9966-y

Original Criticism: Oct 2003
http://link.springer.com/content/pdf/10.1023%2FA%3A1025699511081

Village Voice Blogs by Tony Ortega:
http://www.villagevoice.com/related/to/Scientology/

Tony Ortega now blogs here:
http://tonyortega.org/

Jim Lippard’s article from Skeptic Magazine 17.1
http://www.skeptic.com/reading_room/the-decline-and-probable-fall-of-the-scientology-empire/

What’s the Harm in Scientology?
http://whatstheharm.net/scientology.html

Eve’s links:
Iceland Review: Icelandic MP Moves Elves’ Boulder to His Home
http://www.icelandreview.com/icelandreview/daily_news/Icelandic_MP_Moves_Elves%E2%80%99_Boulder_to_His_Home_0_390052.news.aspx

Sharon’s links:
Doubtful News favorite stories of 2012
http://doubtfulnews.com/2013/01/doubtful-news-favorite-stories-of-2012/

Tim’s links:
Obituary slides from #TAM2012:
http://skeptools.wordpress.com/2012/07/14/tam2012-in-memoriam-slides-tam-obituary/

Back in April Tim asked if 2012 was the “Year of the Skeptool”
http://skeptools.wordpress.com/2012/04/29/year-skeptical-software-tools-knight-challenge-2012/

RBUTR
http://rbutr.com

Truth Market
http://www.truthmarket.com/

Pundit Tracker
http://pundittracker.com/

Brian’s Robot’s links:
Roboy
http://www.roboy.org/
Roboy Junior YouTube Site
http://www.youtube.com/channel/UCcIjF0JbpMZmopI6Vc2yIBw
Roboy Junior on Facebook
http://www.facebook.com/profile.php?id=100004102784256&fref=ts

Announcements:

  • Eve has an article in Skeptical Inquirer (although she only has hearsay evidence for this).
  • Sharon is on this week’s edition of Monster Talk talking about the best cryptozoology stories of 2012. Catch up on all the Bigfoot news on that podcast.  http://www.skeptic.com/podcasts/monstertalk/13/01/02/
  • Registration is open for Skep Tech in Minneapolis April 5 & 6th. Tim is speaking, and they just added Maggie Koerth-Baker from Boing Boing as a guest: http://skep-tech.eventbrite.com/
  • Bob has a new Conspiracy Guy article coming out soon.

The Virtual Skeptics is an independent production of Doubtful News, WhatsTheHarm.net, Skeptical Humanities, and Brian Gregory. Our logo was designed by Sara Mayhew at SaraMayhew.com. Our theme music is by Tremor and is used with permission.

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Posted by Bob

This Week in Conspiracy (15 Dec 2012)

December 29, 2012

Goodeveninggoodeveninggoodeveninggoodeveninggoodevening goodeveninggoodeveninggoodevening and welcome to another episode of the Week in Conspiracy. Ours is a friendly environment where I compile the latest in conspiracy theory from around the web.

Honestly, I thought that the big news of the roundup would be the Oregon mall shooting (remember that?), but of course we had a rotten day in the States a few weeks ago, and we see people trying to make sense of it all. A LOT of confused and misleading information came out as the events in Connecticut were unfolding, and these will be the primary sources of the inevitable future conspiracy theories. I anticipate that the theories will come in the usual popular two varieties:

1) The shooter was brainwashed. This plot device allows conspiracy theorists to blame their preferred villain instead of the person who pulled the trigger. In fact, this one has already come out in a weird way. No you have no idea how weird this is. Stay with me. OK, so, Paul McCartney at the Sandy Relief Concert opened his set with Nirvana with “Helter Skelter,” which was the trigger for the shooter at the Sandy Hook School. QED. Some have floated the idea the shooter’s meds caused this. (Do they not see the natural correlation between people who are messed up in the head and psychiatric care?)

2) It’s (another) gun grab ploy by Obama. Dear Lord, hurry up, Obama! (Turns out the President is afraid the gummint is coming for his guns too!)

Mark at the Denialism Blog puts Mike Adams and his ilk over his knee, because the Health Danger wrote this.   Shepard Ambellas, uh, thinks that weaponized nuns pulled off the job.  Rush Limbaugh plugged the tired “Fast and Furious” angle.

I think that the most widespread conspiracy theory to have emerged is that the Colorado theater shooting and the Newtown massacre are somehow related to a financial scandal, and like a classic conspiracy theory, it relies on 1) superficial similarities between events and 2) arcane and irrelevant knowledge blown way out of proportion. But we’re also seeing a couple of anti-Israel conspiracy theories linked to this. Then there is this…odd timeline.

Elsewhere:

I think that if there were 3 Suns nearby, they would most likely be visible in other places too, and not just in China. (And that’s excluding the fact that we all be dead already.)

Secret documents (freely given) reveal that the vaccine denialist was never just a crazy person and was actually right all along, says denialist.

  • Merle Haggard is slipping. Here’s his anti-scary chemtrails anthem:

This Week in Mark Dice is a Horrible Person:

I stopped following him. He’s a pointless ass-clown.

Best Facebook update about the Sandy Hook shootings:

As much as I love a good conspiracy theory I please please ask my fellow conspiracy theorist friends to stop making yesterdays event into one! I beg of you !!!! I don’t wanna hear it really I don’t !!!!

Twit of the Week:

A level headed analysis of world events or hashtag abuse?

Shameless Smurf™ (@pansgrrl) 12/21/12, 6:08 PM Now the tyrants say “Let them eat genetically modified corn!” #Agenda21 #BilderbergGroup #NDAA #Monsanto #Corruption #GMO #Chemtrails

This one came from my other work, the Burzynski stuff. It just fell out of heaven, so I had to post it:

Jennifer @MadameBourdier @rjblaskiewicz @Malboury Anyway, the USA stole the A-bomb patent. France should steal back the cure for cancer. #Burzynski

Conspiracy theory of the Week:

  • William Tapley, the Third Eagle of the Apocalypse and the Co-Prophet of the End Times, continues to deconstruct “Gangnam Style”:

That’s all for now. I hope that we meet under happier circumstances next time.

RJB

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Posted by Bob

And I get email….

December 20, 2012

So apparently facebook has a feature that directs messages from people you’ve never been in contact with into a mailbox called “other”. If you look at the left-hand side of the screen under “messages,” the folder is in there. I had nearly 70 messages, and, let me tell you, I am a popular guy. (A shout out to Atlanta homegirl Angie Mattke who alerted me to this feature. You are sorely missed up here in the middle of the snowpocalypse!)

Here’s one that came to me in November, from Padz Evans from Petersburg, VA, apparently after I wrote something about Stanislaw Burzynski, the notorious cancer quack out of Houston.

Hey im sure you get this alot but im a fan of you ideas n the sense that i think your thoughts and beliefs are those of a fuck or fucking fucker that doesnt not posses the appropriate brian functionality to have a reliable or substantial opinion on matters that you cannot comprehend. I have one question for you and its really to satisfy my curiosity in how someone and feel such a way twords benificial activities that may cure cancer. My question is as follows.. how does cancers dick taste?

I’m glad you liked the article, Padz!

I was quite pleased to learn today that a complaint I sent to the ombudsman of PBS was quoted in Michael Getler’s column. It was about PBS putting up promotional material that seemed to be pushing a rather crummy and unconvincing straight-to-internet documentary on their website. Here’s the original letter:

I wanted to alert the viewer advocate about something that I saw on the PBS website and register a complaint. I notice that on the list of the most watched online videos at the PBS website that a 9/11 Truther video is currently very near the top. I understand that member stations maintain their independence, and that this is crucial to the mission. I do not see how it follows, however, that a video which is so misleading and factually inaccurate should be made available through PBS’s national website. It seems to violate basic program quality standards which PBS is known for. I am not advocating censorship, merely that PBS should examine the decision/process that led to this appearing on the national website and see if it aligns with the mission of public broadcasting to produce a better educated populace. I appreciate your attention to this matter.

Bob Blaskiewicz, Chippewa Falls, WI

Well, Jeff Sellars did not like what I wrote.

The individual is handicapped by coming face to face with a conspiracy so monstrous he cannot believe it exists. The American mind simply has not come to a realization of the evil which has been introduced into our midst. It rejects even the assumption that human creatures could espouse a philosophy which must ultimately destroy all that is good and decent…The conscientious citizen asks, “How can one be sure what the truth is?”…[We] must ascertain for [ourselves] what the facts are. [We] must accept nothing less than the facts— neither the majority version nor the minority version. [We] must view all the evidence until the face of truth is plain.
—President J. Edgar Hoover

Your cognitive dissonance is blocking your ability to accept Newtonian Physics. Building 7 collapses in 6-7 seconds at free fall speed. There’s nano sized thermite in the dust. www.RememberBuilding7.org

“Who is more foolish, the child afraid of the dark or the man afraid of the light?”

Cognitive dissonance is invoked in the movie as a reason the whole country is wrong and why only the true believers are right. They do not, however, cover the topic of irony.

 

There were a number of birthday invites that I missed (which is probably why I’m such a social pariah), honest questions about things I’ve written, and other missives (as well as stuff so abusive that facebook automatically deleted it).

Ah, modern life on the Internet!

RJB

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Posted by Bob

THE LAST VIRTUAL SKEPTICS EVER (19 Dec 2012)

December 19, 2012

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Posted by Bob

Burzynski Patient Leslie Schmidt’s Story

December 18, 2012
  1. The diffuse pontine glioma is a recurring character in this web series, a serial killer whose name and M.O. we know, but who we just can’t get the jump on. In this case, again, Leslie’s first symptoms were a droopy eye and stumbling. According to her CaringBridge story (truly a wonderful resource for families undergoing treatment), Leslie began radiation and chemotherapy (Temodar) on the 28th of March.
  2. Leslie’s family seems surprised by how quickly her condition seems to deteriorate. They are eager to start treatment ASAP, and they are already shopping around for other treatments. Leslie’s mother, Mary, seems a little suspicious of doctors who are opting for an aggressive treatment that discounts long-term effects, a sort of fatalism the family seems not ready to accept:

    We know that the doctors think she will not be with us long and we are concerned that they may be “discounting” any long-term effects of the treatment. Although we have full confidence in her doctors, we would appreciate if anyone out there can give us any direction on this.
  3. Read Leslie’s CaringBridge journal entry

    Journal Notifications Leslie Schmidt’sJournal Written Mar 24, 2006 10:19pm First of all, let me thank everyone for the outpouring of pray…
    Caringbridge
  4. The next entry in the journal comes from mid April, when Leslie is having surgery to sew shut her eye. There seems to be some damage to a badly healing scratched cornea. She wears an eye patch.
  5. Read Leslie’s CaringBridge journal entry

    Mary posted a new CaringBridge journal entry. Read the latest update and show your support. You can be part of Leslie’s health journey by…
    Caringbridge
  6. At this time the journal reports: 

    Mike & Mary have been in contact with other families over the past few days that have kids with the same illness to determine what treatment & therapy choices they are making. We are looking into significant diet changes as well as some other alternative medicine options. We are also continuing to seek out clinical trials, but finding there are few choices, plus you have to meet eligibility requirements. These can range from having no treatment at all (which leslie wouldn’t qualify) or currently having a recurring problem. At this time, we feel that we should be “pro-active” and do something while the tumor is at least stabilized. 

    As I read this I suspect that the family is actually getting desperate. While it’s important, I’m sure, that a child is properly nourished during this treatment, I see so many people fighting this disease and turning to alternative medicine and then futzing with diet obsessively. Perhaps it gives a feeling of control, of doing something rather than sitting by. 

    Through April as the course of radiation nears an end, Leslie’s port seems to not be properly installed, not in a dangerous way, but in a way that might leave her open to yet another procedure, and she is getting weary of doctors.
  7. As the family celebrates Leslie’s last day of radiation on 9 May and her weaning off of the steroids, her mother Mary starts contemplating alternative treatments. She suspects that cancer thrives in acidic bodies, an alt med belief that seems common but seems implausible to me since all stomachs aren’t filled with cancer. If treating cancer were only so simple, we’d have discovered that long ago and there would be much higher survival rates.
  8. Read Leslie’s CaringBridge journal entry

    Journal Notifications Leslie Schmidt’sJournal Written Apr 29, 2006 8:44pm Hello All! I have finally updated the “Welcome” and “My Story” …
    Caringbridge
  9. In early May, Leslie’s back in the hospital for an infection, and then again at the end of May, when Leslie is suddenly taken ill:

    While attending Camp Smile A Mile Family Camp, Leslie had to be taken by ambulance to the hospital on Saturday night. She was not feeling well initially and did not want to participate in any of the camp activities. Her Mom and Dad did not push her and gave her the option to go home but she really wanted to stay. They noticed that her legs were bothering her when she walked and that she began to have shortness of breath. As a result, they had her ambulanced to the hospital in Alexander City, AL. That hospital would not touch her due to the brain tumor so she was then ambulanced to Children’s Hospital in B’ham and did not arrive there until 4:00 am Sunday morning. Her oxygen level and heart rate were tested right away and her oxygen level was extremely low (in the low 80’s-which requires one to have oxygen given). Her heart rate was high and they think this was because of a fever. Her blood work showed no signs of infection which is why she was in the hospital last week. However, it did show that she was very anemic, so they are now giving her blood in hopes to correct that problem. 

    Leslie remains on intermittent oxygen into the next month, it seems. Her mother is excited when an MRI shows the effects the radiation had on the tumor, shrinking it as expected.  Soon Mary is talking about colon detoxification and Ph and nutritionists, not a good sign as far as evidence based medicine is concerned. Nonetheless, it seems that the parents are sort of forced to sail in uncharted waters here, as there are not any studies to give guidance about maintenance doses of their current chemo in children.  But then we see this:

    We are also still considering the Burzynski clinic in Houston if Leslie’s case is accepted, as the FDA has placed restrictions on who they can treat and who they can’t (based on the success rate of the “proven” therapies such as radiation/chemo) since they are in process of FDA approval for their treatment. As many of you know, the out-of-pocket expense for this would be substatial. If this ends up being the chosen route, you will probably see some things on the site about fund-raising!

    And this:

    ….but we also have her on Ruta 6 & CalPhos which is a homeopathic remedy and has shown success in brain tumor patients through a study done by a Dr. Banjeri in India in conjunction with someone at MD Anderson.
  10. Read Leslie’s CaringBridge journal entry

    Journal Notifications Leslie Schmidt’sJournal Written Jun 11, 2006 11:25am We are packing Leslie’s things for Camp Smile-A-Mile today! Sh…
    Caringbridge
  11. This is in all likelihood the Prasanta Banjeri, who treated–in the most horrifying story I’ve yet encountered–Chase Sammut, a kid who had the same tumor as Leslie. They also start “visualization” exercises at the recommendation of their nutritionist.

    On the positive side, however, Leslie is well enough to take up karate classes again, which is good to hear. It seems that at some point in July the family got word that Burzynski would treat Leslie and they visited his office on July 26th, a few weeks after her 7th birthday:

    Here is a quick update on Mary and Mike’s visit to The Burzynski Clinic www.cancer.med in Houston today. They both feel very strong and hopeful about it and want to get Leslie there ASAP. It is very expensive and the cost up front will be around $30,000 and they will have 3 weeks after arriving to pay that fee. Then, in all, the treatment will cost up to $110,000 ($7000 a mth.)….if insurance does not cover it….which they do not expect it will. Leslie will have to have another MRI done in B’ham before her treatment starts at The Burzynski Clinic. She will need to be at the clinic 7 days after the MRI scan has been done. She will be at the clinic for 3 weeks and then go home with a pump (a little bigger than a cell phone) in a back pack and have to wear it most all of the time. It will be administered through her port. She will be able to take it off for 2 hrs a day (eg. for Karate class). This treatment will be done for about a year. 

    I’m guessing nobody at the Clinic mentioned that Burzynski was convicted of insurance fraud (and the conviction was upheld). I can’t imagine that insurance companies would like doing business with him or trust him. But he apparently exudes trust and concern:

    Mike and I both feel that this therapy will not hurt her since it is non-toxic and we would always wonder “what if” if we do not try it. We did not feel like we were being fed a “sales pitch” of any kind while we were at the clinic. They simply explained their treatment and let their cases speak for themselves. I almost expected Dr. B. to be sort-of an “untouchable” type of Dr., but found him to be very caring and down to earth, as the rest of the staff. Since I have designed medical buildings for over 20 years, I sort-of expected his office to be “state of the art” with a lot of “show”. We did not find that either. Although this may be a knock to my profession, I felt comfort in that they are not out spending a bunch of money trying to make things look fancy. Rather, their concern is treating patients to the best of their ability. Dr. B. is now also doing gene therapy which is a highly targeted cancer treatment to the specific genes involved. If antineoplaston treatment does not work for whatever reason, he indicated that gene therapy might be another option for Leslie. With gene therapy, they have seen cancer disappear very quicly. However, he wants to start her on antineoplastons first since he and his staff are much more experienced in this treatment. At this time, we are planning on starting Leslie on August 14th. One of us will be in Houston with her for 3 weeks to learn about administering the treatment at home and so they can get her regulated to the correct doseage. For the next 2 weeks (before we leave), we are getting the house ready to sell and will hopefully have it ready to show by the time we leave.

    There are so many warning signs in this statement. First, never once in my experience has a doctor ever cracked open a dossier of patient success stories for me. Hell, that’s so scummy not even drug sales reps do that! Parading success stories is the definition of a sales pitch. Secondly, the claim that ANP are non-toxic is ludicrous and unsupportable–you only need to look at the trips to the ER by the other patients on this site–and one can only wonder what weird definition of “informed consent” operates at the Burzynski Clinic. Lastly, Burzynski has that other miracle cure, his absurd “personalized gene-targeting therapy.” He sets the hook in deep and yanks hard, he does.

    Leslie begins antineoplastons in mid-August. 


    Oh, when they start ANP, it seems that there is a fluid-filled cyst. I don’t know what it is at this point, but it seems to happen a lot at Burzynski’s Clinic and it seems to never be a harbinger of success. Now, it’s on the tumor not in the tumor. Perhaps it is a remnant of radiation? Don’t know:

    Dr. Burzynski noted a fluid filled cyst on the tumor that they will be watching closely throughout treatment. As the treatment starts working, additional fluid is common due to the tumor dying off and creating necrosis (dead tissue). This additional fluid has to go somewhere and it may gather in that cyst causing it to grow in size causing neurological symptoms. At some point, it may become necessary to aspirate the cyst. I don’t know for sure and did not ask today, but I believe this is an outpatient procedure. I have heard of this in numerous other DPG children, so I believe this is a common problem with this tumor although any procedure in this area of the brain stem is cause for concern. To reduce problems in this regard and to reduce swelling during treatment, they will be prescribing Decadron (steriods). Although we do not like this idea, it doesn’t appear that we can avoid it as natural anti-inflammatories may not be strong enough. As many of you know, we have been on a pretty strict diet since May. We are meeting with the Burzynski nutritionist tomorrow (I believe) to review their dietary recommendations to see how our diet may need to be adjusted for optimal results with their treatment. We understand that salt will be an absolute no-no, as increased sodium levels are a common side-effect of treatment.

    When Leslie has headaches and dizziness following the start of ANP, we get a sort of animistic folk-explanation for what is happening to her:

    Leslie did wake up with headaches and felt dizzy on Thursday. This is to be expected since the medication is going up and “attacking” the tumor. The body’s natural response to this is swelling. Therefor, they slightly increased her decadron to combat this reaction and she has been fine since.

    During the week of August 25, they report that they have bought Leslie a true cowgirl outfit, which is truly adorable:
  12. Caringbridge

    Mon, Dec 17 2012 23:11:15

  13. Notice the advertisement on that wall. (Grumble.) This is Ms Carla, one of the people taking care of Leslie. She takes Leslie to a Joel Osteen’s megachurch: 

    We attended Lakewood Church on Sunday with Ms. Carla from clinic.Although we were seated in the upper level, Carla spoke with an Usher who kindly escorted us down to the floor when it was time for prayer. They took us directly to Dodie Osteen’s line (Joel’s mother). Dodie laid hands on Leslie and commanded that the tumor “come-out”. 

    At least this treatment didn’t have any side effects.

    The family is trying to sell their house at this point. 

    On Sept 21, the family puts out an ecstatic blog post about her MRI:

    I’m going to go ahead and post the entire report prepared by Vestavia Imaging. I don’t know what some of this means, but I do know that it is good!!!

    “Again demonstrated in is a large infiltrating mass involving the right side of the pons and right middle cerebellar penduncle. There is a fairly large exophytic component to the lesion extending inferiorly into the subarachnoid space lateral to the right foraman of Luschka. The medulla is also involved in this infiltrating process. The fourth ventricle is displatced to the left. There is, however, no definite indication of hydrocephalus. The supratentorial structures have a normal appearance. Following administration of intravenous contrast material, irregular contrast enhancement is noted. The appearance of the lesion on post-contrast images suggest an aggressive tumor histology.

    “Comparison is made to study dated 8/9/06. In the interval side since the preceding study, the previously noted central necrotic portion of the tumor now has a more solid irregularly enhancing appearance. The overall anterior-posterior dimension of the lesion in the axis parallel to the right middle cerebellar penduncle appears decreased. This could be secondary to aspiration of the patient’s cystic or necrotic central component of the tumor. Correlation with surgical history is suggested. Careful search is made for evidence of drop metastases. There is no indication of seeding of the subarachnoid space at this time.

    “Impression: The pattern of contrast enhancement has become more irregular and the central necrotic or cycsic portion of the tumor has decreased in size. Has there been interval aspiration of the cystic or necrotic portion of the tumor?“

    Ok, so there we have it. This Radiologist has no idea what type of treatment we have been doing, but he is asking if the tumor has been aspirated. So all of you understand, there have been NO aspirations on this tumor, at all…ever. Dr. Barbara (from Burzynski) called yesterday and said it was a good report, but she did not have the scans. Scans were overnighted to them yesterday and we should have their reading sometime today or tomorrow morning.

  14. On Oct. 30, we get some bad news, and it really does seem by now that the cyst is not a good sign.
  15. Read Leslie’s CaringBridge journal entry

    Written Oct 27, 2006 11:14pm Good News with More Challenges ahead! First of all, Leslie’s next MRI will be on Oct. 31st, so pray for God’…
    Caringbridge

  16. Written Oct 30, 2006 9:35am


    A Rough Weekend


    Hello, I just wanted to update on this weekend. We had a weekend filled with activities scheduled and very tired on top of it which did not help matters. While shopping on Saturday afternoon, I noticed Leslie was not walking as well and had less engergy. She rested the rest of the day and seemed to be ok on Sunday morning. However, she started the same symptoms on Sunday around noon and her speech started becoming slurred as well. We had started to taper her decadron down and it might be that we simply tapered too much. After speaking with the Dr.’s in Houston, we started her on IV decadron to get her feeling better. She is better today although still lethargic with some signs of symptoms. Today, the doctors prescribed a higher pill dose of decadron and we will decrease over the next few days to determine where she needs to be. I have her at home resting today.


    The symptoms could also be a sign of necrosis (dead tissue created from the treatments) taking up more space in the brain. We should know more after tomorrow’s MRI although we will not have Burzynki’s reading right away since a CD has to be overnighted to them.


    Please keep Leslie in your prayers as she goes through this phase. We have always expected there will be many ups-and-downs through this although it is still difficult when the downs occur.

  17. I mean, I’m just a putz on a PC with no medical training. But this necrosis thing, the tumor dying at the middle, seems to presage bad things always. As Dr. Gorski has explained, the pattern of a tumor dying in the center is more likely to be a result of a tumor outgrowing the blood supply. Otherwise, one would expect the thing to open lots of holes, like a vile swiss cheese, or shrink from the outside in. Are we seeing this pattern AGAIN? Why the hell is there nobody at the Clinic who seems able to deliver this news?! Maybe if we post enough of these, someone with authority will notice. 
  18. Read Leslie’s CaringBridge journal entry

    Written Nov 6, 2006 10:30pm Hello All! First of all, thanks so much for all the messages. It is so comforting to know that so many of you…
    Caringbridge
  19. The tumor has grown, it seems, and the doctors in Alabama are going to put in a shunt to try and relieve some of the pressure. They talk to Burzynski:

    On that note, we did speak with Dr. Burzynski today regarding the latest scans. We had been told before that the tumor was larger, which obviously had us concerned. However, Dr. B. says we need to consider the “net” tumor size. The “net” tumor size is actually smaller. It is only larger because there is a lot of dead tissue around it and inside of it. This obviously causes the diameter to increase which is how it is being measured. This means that the medication appears to be doing it’s job because it has turned active tissue into dead tissue. He noted that some of the dead tissue could also be from radiated tumor that is taking time to “die off”. However, the dead tissue can also cause a host of problems of it’s own. The bottom line is that a lot of inflammation and irritation is occuring (which is fairly typical from what I can tell). What we must now pray for is for Leslie’s body to work in the most optimal way to rid itself of the dead tissue so that the inflammation and irritation will cease. As the body does this, Dr. B. says we hope to see the tumor collapsing on itself, creating a much smaller image on the next MRI. He described it like a blister on your skin. Over time, the body carries that liquid dead stuff away, then the skin collapses down eliminating the “mass” of the blister. This is sort-of like the same thing in Leslie’s head. The problem is, there is only so much room in a person’s head for this inflammation and swelling. This is why we must pray for her body to eliminate the dead tissue in the most efficient manner possible.

    The disease seems to be progressing but the family seems to interpret this as “getting better”, but the doctors in Birmingham seem to be willing to try to remove at least some of the tumor. Maybe that’s why they are hopeful:

    We returned home on Thursday afternoon and Leslie has been getting better each day. She gained some additional weight due to the increased steroid dose, so we believe her mobility is still not as good simply because of the added weight. Her eye movement is still not normal and the right eye is starting to turn inward. This is most likely an effect from the tumor rather than the hydrocephalus. 

    At the end of November, we hear:

    By Sunday night, her balance had declined significantly requiring her to be “cradled” to walk. In addition, she had almost no appetite and increased apathy. These are obviously very disturbing developments. We stopped the eye therapy on Sunday night to determine what was caused by decreased vision vs. tumor/swelling. On Monday morning, Burzynski prescribed an increased dose of decadron steroid, as it was most likely swelling. After 24 hours and no significant improvement, Burzynski told us to have a CT scan done and contact the neurosurgeon (Dr. Wellons) since this could be related to her ETV procedure clogging up. 

    By December 18, Leslie has had some more problems. I’m not seeing anything in here that looks like improvement, just a long decline. 

    I don’t have much “official” news, but it’s been a while since the last update so I want to let you know what’s going on. Late last week, Leslie’s balance and speech seemed to start declining more. The doctors increased her decadron again (we can’t seem to get it tapered off) and we have seen some improvement although the increased symptoms are still a big concern. Today, we decided with the doctors to have another MRI. This way, Burzynski will have a chance to read it before closing for the holidays. Plus, we will know where we stand and the doctors can to respond to the symptoms more accurately rather than “guessing” over the 2 – 3 things that could be happnening. We had the brain MRI this afternoon and will return in the morning for a complete spine MRI. I am overnighting the Brain MRI’s to Burzynski today and will drop off a CD to Dr. Wellons tomorrow. We are hoping this will all keep us out of the Children’s ER for hours on end over Christmas. Please pray that we can avoid this and enjoy a nice break over Christmas. We all really just need some quiet time. We realize that it won’t be easy either way, but being home is always better than being in the hospital.

    The family had a relatively uneventful Christmas, which is a deserved relief, but at the beginning of the year, we learn the tumor is STILL growing. 

    Unfortunately, the last MRI showed growth which I guess explains Leslie’s increase in symtoms. We have also been diligent about trying to get her off of steroids which is a factor as well. Based on our latest attempt, it appears that she will have to stay on some amount of steroids for the long-haul. Although Burzynski clinic says the ANP therapy is our best bet against this tumor, we have ordered an additional blood test that has been sent to California to determine if Leslie might be eligible for their (Burzynski’s) latest gene therapy treatment.

    Well, if the first insanely expensive not-a-treatment doesn’t work, try another insanely expensive treatment. That’s how they do it at the Burzynski Clinic, at least. 

    By January 9th, Leslie’s having a tough go, swallowing and speech are difficult, and she is suffering from paralysis on her left side. By the 30th, we hear this, despite no good evidence that this poor girl is responding:

    Leslie has been back on Burzynski’s antineoplaston (ANP) treatment for over a week now. The doctors in Houston are still hopeful that the increased tumor mass is actually more swelling and necrosis (dead tissue) rather than active tumor. The thought is that if we can get a handle on these things, then the mass will show decrease at some point. Obviously this is no small task, as swelling and necrosis are very serious issues.

  20. This is merely cruel. But it’s another $7,500 in Burzynski’s pocket, I suppose. In early February, Leslie is in the hospital with pneumonia.  She was back home by the 15th, but still in the thrall of Burzynski:
    She only had the November scan to compare, but we had another scan done in December which showed a 32% increase from the November scan. This being the case, we were pleased with the news on the MRI although symptoms seem to have increased which is a concern. We have overnighted a copy of the scans to Houston and should be speaking with Dr. Burzynski on the results tomorrow afternoon (fri.). to determine the best course of treatment from here.
  21. Read Leslie’s CaringBridge journal entry

    Journal Notifications Leslie Schmidt’sJournal Written Feb 15, 2007 6:57pm Back From the Hospital We just got back from the hospital this …
    Caringbridge
  22. Leslie never rebounded. Her parents made the courageous decision to contact hospice and Leslie passed away peacefully early on February 20th.

    These stories of desperate parents working very, very hard for their children are depressing. I’m learning a lot about suffering through their stories. At no point in this narrative did I see anything that looked like meaningful improvement. I wasn’t there. But this line about how the cancer’s dying and THAT’S why your child is getting worse is such an evil one. It’s the same thing that I keep seeing over and over. We must find a way to put an end to this and get the attention of people in authority that this cannot continue. I do hope that former patients will see that there is a horrific pattern here and realize that they have every right to complain about the treatment they received. They will be helping future children by taking action.

    For reliable information about clinical trials, visit clinicaltrials.gov. Please consider donating toSt. Jude’s Children’s Research Hospital, who unlike Burzynski, charges nothing to treat sick children. 

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Posted by Bob

Luna Petugine’s Story

December 8, 2012
  1. Following the initial diagnosis, eleven hours of emergency surgery took a hard toll on Luna and left her very weak on her left side and unable to swallow (she was fed through a tube after that). Conventional therapy was very hard on Luna, but in December 2008, the tumor had shrunk enough that the doctor could attempt surgery, and they went through a course of dangerous surgeries over the next few months, which Luna tolerated fairly well, according to her parents’ website.  But the tumor kept growing, and this made them desperate.
  2. They met with Anthony Michalski, their consultant in pediatric oncology at the Great Ormand Street Hospital. This interaction and the collaboration of the pediatric oncology department at GOSH was partially documented in the BBC 2 film, A Tough Line. When they review scans following her string of surgeries, the entire team–an entire room of specialists–agrees that the tumor, which is now compressing her brainstem is recurring and that the current treatment is not working. Michalski wants Luna to go on etopocide to prolong her life; a cure, while possible, would likely not be the ultimate outcome. They agree to go on the meds, but when no physician in the UK can offer them a cure, they find Burzynski on the Internet. 
    He tells them exactly what they want to hear. According to Luna’s website:

    There is no more treatment that can be done in the UK. We went home and cried for several days then we looked at Luna and thought hang on she’s not crying we cannot give up she has fought so long and hard and not a day passes that through all of this she hasn’t smiled. So we searched and searched asked questions and somehow found contact with another family who’s daughter had exactly the same disease and discovered there was something out there.

    A treatment call Antineoplaston therapy which has had amazing results in the US. We have to try this.


    The cost to meet the Doctor for assessment is £20,000 
    If Luna is accepted the treatment then costs £50,000 a year.

  3. In late May, and early June, Luna’s story was in the media, in The Sun, in the Watford Observer, and the Sunday Express as the family was actively raising money for Burzynski:
  4. Luna Petagine

    When cancer survivor Carmela Cook read about Luna Petagine’s fight for life in the Watford Observer last week, she said she was moved to …
    Lunapetagine

  5. At the end of July, 2011, the family arrived in the United States searching for a cure. By the end of August, back in the UK, they knew that they would be in Houston by September 12. 

    The traditional treatment seems to be having an effect, keeping the disease from growing. It is an “effective agent,” perhaps the best possible outcome at this point. Nonetheless, the family presses ahead fundraising for Burzynski. They raised £100,000 for Burzynski in a mere 8 weeks.

  6. They report to their consultant in the UK after their trip that Burzynski told them that he has 30% of patients have a good reaction, using the clinically substandard metric of “stable disease”  a substitute for “success” that no other researchers find acceptable (especially when he has mentioned there might be a cure!). According to a site review at Burzynski’s clinic: 
    “Moving from protocols to results, I am surprised by Dr. Burzynski’s statement that stable disease is a positive outcome. That runs contrary to established criteria for trial design. In the context of phase II trials, which are short-term studies, stable disease is not reported as a positive outcome.”
  7. After this consult in the UK, Luna’s doctor remarks, 
    “But what you hear quite a lot is, ‘how do you know that he or she is going to be ‘the one [who has a successful ‘miracle’ treatment]? … And the phrase that makes my heart sink is ‘We’d never forgive ourselves if…’. Actually, it’s not about them forgiving themselves. It’s about them doing the best for their child. And the focus should be what’s happening for the individual child rather than parental emotions. It’s tough because it’s so understandable […] that you are going to do everything in your power to hunt down the last chance of cure, but where that becomes a futile exercise is a difficult call, a difficult line. ” 
    This is the point that an ethical, concerned doctor takes away from a professional lifetime of caring for children, something that Burznyski seems to have never considered. (It apparently doesn’t fit his business model.) 
  8. Here is a photo of a physician watching parents walk away from a treatment that is working as he’d hoped: http://pic.twitter.com/EQ1vEIQK

    Bob Blaskiewicz@rjblaskiewicz

    Fri, Dec 07 2012 21:15:25

  9. On October 10, this photo was uploaded to facebook:
  10. Timeline Photos | Facebook

    Facebook

    Fri, Dec 07 2012 21:59:42

  11. I have so many photos in front of this…tomb that it’s hard to imagine. They really are at death’s door.
  12. One week later, on October 17, the message goes out:
    Little Luna is currently in hospital and not too well. Our thoughts are with all of you xxxxx
  13. So quickly does Luna’s condition deteriorate it’s difficult not to think about how quickly Rachel Mackey nosedived after starting ANP and how groggy she was. 
  14. Once Luna was on the Burzynski treatment, her sodium level went insanely high. Her REAL physician’s reaction to this news, which was captured on film by the BBC, tells the whole story about what a horror antineoplastons are:
  15. Here’s a doctor hearing that Burzynski’s ANP treatment had put Luna in the emergency room with a sodium level of 178. http://pic.twitter.com/TjzNXKQ0

    Bob Blaskiewicz@rjblaskiewicz

    Fri, Dec 07 2012 21:35:12

  16. This is much the same deadly side effect that nearly put Adam McArthur into a coma. That Luna is in a sorry state is immediately apparent. She is chugging water incessantly throughout the clip and slobbering uncontrollably. No matter what a Burzynski supporter says, this is a toxic treatment.
    (I should note that this disturbing film is really important to understand the horrible choices that parents are forced to make. I recommend it, lest you think anyone can take writing about these issues glibly. You can’t.) 
  17. By February of this year, the ANP has proved to have been a resounding failure. Burzynski, just like with Adam McArthur, tries to get them on his ridiculous “gene-targeted” therapy; it’s basically a Chemo Colatta, apparently mixing drugs that have not been tested together, but don’t take my word for it:
    Luna and her family have been talking to Doctors in the US at the Clinic, who have agreed it is unsafe to put her back on the Anteneoplaston Therapy because her tumour is so close to her brain stem. They have however suggested they put her on a treatment called Gene Targeted Therapy. This is where they take a sample of the tumour and in a lab test it’s genetics and test what drugs will work against it. Then then will give those drugs to Luna. The family are very excited because they knew the Anteneoplaston could eventually be too much for Luna, with possible fatal consequences and of course they are desperate to cure her. The Gene Targeted Therapy is having amazing results in adults so we pray it will do the same for Luna. We now need to continue to fund raise so the family can start the treatment and carry on with it. Any fund raising ideas please email us via the website. Thank you x

    From this point on, it is uncertain to me what their relationship with Burzynski is. They seem to have continued fundraising but were working with doctors in Boston. 
  18. In early March, Luna’s mother appeared in a strange article on the typically useless HuffPo, apparently convinced that breast implants had caused her daughter’s cancer:
  19. Mother Blames Burst PIP Implant For Daughter’s Brain Cancer

    A mother has claimed that her burst Poly Implant Prothese (PIP) breast implant could have caused her young daughter’s incurable brain can…
    Kyrsty Hazell
  20. The announcement goes out on the 25th of June:

    It is with a heavy heart that we write this update. Despite battling against all the odds over the last 3 years it saddens us to tell you Luna is losing her battle. Lucy and the family took her back to GOSH on Friday after she appeared to be deteriorating in front of their eyes. A CT scan gave the devastating news that not only had the tumour grown but that it now appears inoperable and beyond treatment. The family have been told to take Luna home and cherish the time they have left with her. The picture here shows Luna, her siblings and cousins enjoying a family day for their Popsies birthday. The family continue to show unprecedented strength and dignity throughout and we have nothing but admiration for them – especially Luna x
  21. They carried their daughter very, very far. Her father ran a damned marathon for her. These parents did everything that their instincts told them to do.
  22. On August 8, 2012, the sad, sad news came that Luna had died:

    On behalf of Lucy and Mario It is with great sadness that we share with you that our Beautiful Luna fell asleep very peacefully with mummy and papa holding her tight to become a shinning star, and we thank her for all the wonderful memories she leaves with us, and thank you from the bottom of our hearts for all your support and love you have shown us in everything that you have done.

  23. On the 16th, the family–and the whole community that sprang up around her—said farewell to their daughter. 
  24. Crowds pay last respects to little Luna Petagine

    Crowds pay last respects to little Luna Petagine 5:30pm Thursday 16th August 2012 in News By Amie Mulderrig, Senior Reporter The funeral …
    Watfordobserver
  25. Her family has continued to memorialize their daughter, and I do hope that they continue to press Parliament for more funds for brain cancer research. 

    To learn about legitimate clinical trials, please visit clinicaltrials.gov. To help children receive top-notch, free cancer care, please donate to St. Jude’s Children’s Hospital. 

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Posted by Bob

Adam McArthur’s Story

December 7, 2012
  1. This is an especially sad story. His wife tells the story about the first days, waiting outside while Adam was in the operating room. The surgery was successful and the doctor suggested it was “possibly a mid-grade [glioma].” In three days, Adam had sprung back:

    That’s when we started researching like crazy.  Regardless of what the result was, we were going to go alternative.  Adam definitely did not want chemo or radiation, and the more research we did, the more comfortable we felt with that decision.  

    If the tumor recurred, Adam’s prognosis was probably very bad. They made (generally healthy) lifestyle changes and stopped using cell phones, hoping to ward off a return of the cancer. They also got in contact with the Burzynski Clinic, who are completely incapable of making any promises. Apparently, by the end of January, they were planning to go to Houston.

  2. Healer in your Heart: Houston We Are Go

    Things have been really crazy in the McArthur household lately! Tax time is here again, and Adam and I have been buried under expense rep…
    Adam and Vanessa
  3. Their first consultation with the Burzynski Clinic was on the 6th of February of 2012. The parents were not available and missed 2 of their children’s birthdays during that trip. They rented a Chevy HHR, left the kids with the grandparents, who were in from the UK, and drove down to the clinic. And then they were hit with the bad news, and an interesting look at what goes on inside the Burzynski Clinic (emphasis added):
  4. Dr. Szymkowski met with us to discuss Adam’s medical history and confirm the details of his brain cancer.  She also briefed us on the two possible approaches that Dr. Burzynski would take in Adam’s case.  The first case scenario is his patented antineoplaston therapy.  To qualify for that therapy, you have to apply to the FDA for special permission, and show that the cancer is “persistent” after using traditional therapy.  Well, we assumed that this approach would not be appropriate, simply because the tumor has been removed and hasn’t had time to become what could be considered “persistent“.  We then got to meet the man himself!  The meeting lasted less than 10 minutes.  He briefly explained that he would most likely be using a “gene targeted” approach to treat Adam’s cancer.  […]  One of the medications is sodium phenylbutyrate, which is one of Dr. Burzynkski’s signature medications.  We were definitely excited about that one, because obviously we can only get that here.  After being shuffled around a bit more, we were then sent to the financial coordinator.  She showed us the fee chart that we had already received in our information packet.  So, no surprises there.  But… then she starts lis[t]ing the medications that Dr. Burzynski has prescribed for Adam, which are not included in the treatment costs.  Sprycel… $8,314.80.  Votrient… $3,098.40. (emphasis added)
    The family found that the cost would be in the area of $25,000 a month. 

  5. Clearly these patients were being told that Burzynski would be treating these patients. Legally, this is very interesting since the entire premise of the TMB withdrawing their complaint against Burzynski in October was that Burzynski was not directing treatment.

    Bullshit. And this is going on even as his lawyers are arguing in court that he is not responsible for the “decisions” that his doctors make, an excuse that actually persuaded a judge! I wish I were more familiar with the workings of law, as I suspect that such behavior is as ethical as perjury. The family then became aware of the serious side effects of these chemo cocktails that Burzynski was proposing, contrary to the hippy-dippy natural side-effectless hype that his supporters parrot:

  6. At home we started talking.  I did some online research into the drugs, and really didn’t like what I was reading.  Side effects like “severe or like-threatening liver damage”, and “may cause you to develop a hole in the wall of your stomach or intestine”.  My favorite one was, “may cause abnormal passage in the body”.  Abnormal passage?  So, not only would we have to spend $25,000 a month for the drugs, but Adam might develop a whole host of other problems as a result. 
  7. The family had initially decided against any chemo treatment, but (surprise, surprise) when they announce this to the Clinic, the doctors tell them that they have found lesions on the MRI, which makes Adam a potential candidate for one of the 60  bogus ANP trials that never seem to get finished or result in any meaningful publications.
    The family is about to back away from the therapy and, and only after that threat to Burzynski’s bottom line does the Clinic bother to inform them that there are more lesions in Adam’s brain:
  8. Dr. Sano was very nice, and said she would certainly repect our wishes.  However, since they found lesions in Adam’s brain this morning, it looks like the cancer may have returned and therefore the drugs would really be necessary.  I nearly dropped the phone.  Lesions?  Already??!!  It just wasn’t posssible.  The doctor explained that due to the change in circumstance, she would need to meet with Dr. Burzynski and discuss what he wants to do next, and she asked us to go to the waiting room where she could talk to us face-to-face.
  9. Boy, Texas Medical Board, it sure looks like he is directly managing patient care, doesn’t it? And that doctors working under him defer to his judgment instinctively, doesn’t it? I wonder whose signature is on those records? That would be very interesting to know. 

  10. Healer in your Heart: Shocking News

    So, now that we had decided not to proceed with the drug treatment, we were feeling really positive and excited. What a relief that we di…
    Adam and Vanessa
  11. And we were totally honest with [Dr. Sano].  We can’t afford the meds.  We just can’t do it.  She told us that it was now possible that Dr. Burzynski might want to put Adam in the clinical trial.  Now he had a “persistant” tumor, and there was something measurable.  If he was given permission by the FDA to receive the antineoplaston treatment, now there was material they could measure and watch it shrink.  This is essential to be considered for the trial.  […] (emmphasis added)
    Later that evening, they receive a phone call:
    Dr. Burzynski is putting Adam forward for the trial.  He is going to receive the antineoplaston therapy.  The therapy we have read about from the beginning.  The real reason we came here.  She doesn’t know anything about the financials, which we’ll have to work out with the counselor tomorrow.
  12. So, the Burzynski Clinic is doing a wallet biopsy, the only procedure that they are any good at. The McArthurs went ahead with ANP. They are desperately looking for supernatural signs that what they are doing is right, and they find them everywhere.
  13. On the 15th of February, they received news that the FDA would abet another patient’s entry into a trial:

    Adam’s approved!!!!!  Tomorrow morning Adam has an appointment at a Houston clinic to have his catheter fitted, then Friday he gets hooked up to the antineoplastons. […]Also, we’ve been told that Adam’s sodium intake has to be meticulously watched, and his fluid intake and excretion carefully monitored.  I’ve been told, “If you can’t wake him up in the morning, get him straight to the hospital.”  Fluid can accumulate in the body or brain and cause complications. (emphasis added)
  14. As always, even the ANP can have dramatic and potentially lethal side effects, no matter what you hear. 

  15. Healer in your Heart: Researching the treatment

    Adam’s approved!!!!! Tomorrow morning Adam has an appointment at a Houston clinic to have his catheter fitted, then Friday he gets hooked…
    Adam and Vanessa
  16. And, WOW, when you look at the status of all those lesions that Burzynski’s group found on the MRI, it looks like their status/existence was not completely certain:

    We also had an appointment with the radiologist which was a bit depressing as well.  We were misinformed before.  The current tumor was NOT there immediately post-surgery.  The post-surgery MRI shows a clear cavity.  But, 6 weeks later there was definitely a “suspicious” enhancement within the cavity.  It’s no bigger than a pea, but it’s probably a recurring tumor.  There’s a small chance it might be nothing, only time will tell.  I don’t know why, but that news really got me down.
  17. Are you paying attention, Texas Medical Board? That needs to be clarified. 
  18. On Feb 25, the doctors at the Clinic show that they are having a hard time distinguishing between someone retaining water and being dehydrated:
    Although Adam had drank 11 liters (yes that’s right) of water, he had excreted 12 liters.  His weight had dropped by 2 pounds, so Dr. Barbara explained that he is probably dehydrated.  She recommended that we only increase the dosage by 20ml on Saturday just to be on the safe side, but to keep an eye on his fluid intake and weight.  So, Adam has been drinking and eating like a champ and polished off a massive dinner last night.  He drank even MORE water this morning to make sure his weight was back up.  He still came up a bit short on his fluid totals (intake was 12 liters, but output was 13 liters), but weighed in at a much healthier 155lbs. this morning.  But, the substitute doctor wasn’t happy.  She thinks that Adam is retaining water.  What??  He excreted more than he took in.  He can’t possibly be retaining water.  What the heck is he retaining?  His weight gain can be easily explained by the mountain of penne bolognaise I forced him to eat last night.  But, she refused.  No increase in dosage. 
  19. So who’s really in charge of the patients at the Burzynski Clinic?

    The other good news is that Adam is at his target dose.  Dr. Burzynski himself has been reviewing Adam’s case, and for mixed gliomas the dosage can be lowered and still be effective.  Adam is NOT on any steriods and has not suffered any fatigue at all.  This is nothing short of miraculous.  Many patients have ended up in wheelchairs because of the debilitating fatigue.  And everyone has to take Decadron to keep cranial pressure down.  Adam hasn’t needed any.  Everyone is really pleased with how well Adam is doing so far.  And Dr. Burzynski has a prediction… he believes that Adam’s tumor will be gone within 2 months, and after 8 more months of maintainance treatment, it should never recur.  I LOVE that prediction. (emphasis added)
  20. Since I started exploring extraordinary claims, I have noticed that people are willing to pay almost anything for 1) hope and 2) flattery.
  21. In March, after Adam and Vanessa have returned home, they received the results of their first MRI after treatment began:

  22. Healer in your Heart: Looking Good

    We just received a call from Dr. Barbara. The radiologist still has to do a few more measurements, so he cannot say for sure if the tumor…
    Adam and Vanessa
  23. We just received a call from Dr. Barbara.  The radiologist still has to do a few more measurements, so he cannot say for sure if the tumor has shrunk.  However, there is considerably “less enhancement” in the tumor.  This means that there is less activity, and the tumor is showing up less dense on the MRI than before.  That explains why it is so difficult to see in the image.  All good news!!!  Dr. Barbara said, “Geeve Aatum beeg hug frum mee and goa celebrate!” 
  24. I’m no doctor, but it just doesn’t sound like the tumor is shrinking. And this seems to be confirmed in the May 12th update, when it is revealed that the tumor has grown 20% in the last 8 weeks. (The progress of the disease, as is often the case w/ Burzynski, seems independent of the ANP dosage.):

    The MRI showed that the tumor that had shrunk by 40% 8 weeks ago, has now increased in size by 20%.  There is also another lesion that has remained unchanged.  […] The tumor seems to be affected by the treatment, but apparently this dosage level just isn’t going to cut it.  So, Dr. Barbara has decided to increase Adam up to the maximum dosage.  To put it bluntly, this sucks.  It sucks on so many levels.  
  25. Soon he is up to drinking 12 liters of water a day! By the end of May, the family’s finances have gotten so bad that Amanda starts talking about it on the website.
  26. On June 11th, we get a report that looks like someone at the Burzynski Clinic nearly gets Adam killed (they never find out who it was…apparently they don’t put things like “calls to patients” in patient files at the Clinic or something) when they call saying that his blood work is bad, setting off a chain of events that leads to him nearly slipping into a coma.

  27. Healer in your Heart: Two Tumultuous Weeks

    It all started on a Friday afternoon.The clinic had been trying to reach us and had left two messages, but I was out and didn’t check the…
    Adam and Vanessa
  28. On the 22nd of June, the MRI shows that Adam’s tumor is “stable,” which is a “success” at Burzynski’s Clinic, but it is a loose interpretation of “success” that no other researchers find acceptable. According to a site review of Burzynski’s clinic: “Moving from protocols to results, I am surprised by Dr. Burzynski’s statement that stable disease is a positive outcome. That runs contrary to established criteria for trial design. In the context of phase II trials, which are short-term studies, stable disease is not reported as a positive outcome.”
  29. By August it seems that the tumor is growing again, and we get the sad news in one of the most bare moments I’ve seen since I’ve started this project:

    It’s 5:00 in the morning, and I just can’t sleep.  Adam and I have been talking, holding hands in the dark.  The bedroom is actually dark for the first time in 6 months.  And completely silent.  The whooshing of the pump is gone, as is the pump’s bright display that used to cast a glow around the whole room.  It’s over.  We received a call yesterday that shocked both of us to the core.  Adam’s lesions have grown since the last MRI 8 weeks ago, and there is now a third lesion.  The treatment didn’t work.  It’s worked for so many others.  It is the one treatment that gave us any hope of Adam seeing the boys grow up.  He probably won’t ever get to meet his grandchildren.  He probably won’t see his boys get married or finish school.  He may not ever get to hear Finlay say “Daddy”.
  30. What is all the more galling, that after failing to help Adam in any meaningful way, the Clinic suggested that he come back and start a NEW course of treatment:

    We don’t know what we are supposed to do next.  We have discussed a few options, but they all look so awfully wrong.  The Burzynski clinic is encouraging us to come back to Houston so he can start gene-targeted therapy.  It just feels wrong.  First of all, we need to come up with $30,000 to start the other treatment, not to mention all the expenses of going down there.  It makes both of us nauseous just thinking of going back to that place and starting over.  The monthly cost of the treatment is over $20,000.  And it has a much lower rate of success than the antineoplastons. 
  31. They eventually moved on to another therapy. I wish them the best.
  32. For reliable information about clinical trials, visit to clinicaltrials.gov. Please contribute to St. Jude’s Children’s Hospital, which cares for sick children even if they can’t pay. Unlike Burzynski.

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Posted by Bob

This Week in Conspiracy (2 Dec 2012)

December 3, 2012

It’s a balmy day here in Wisconsin. In December. It’s probably just the sun or hippies or something.

A week of editing, writing, crusading, and, above all, grading has passed, and I am up to my eyes in tales of small groups of people doing very naughty things in secret. So let’s get to the conspiracy theories!

Twit of the Week:

Jesse Ventura started a rumor this week that TruTV is messing with his show. Curiously, he has not updated his twitter feed since. Perhaps his overlords at the network are reminding him of who he works for? Muahahahah! Then this came across the feed:

CT W/ Jesse Ventura @CTWJV

Jesse Ventura: Is Time Warner Sabotaging Conspiracy Theory? If you are A cable, dish network, or directv… fb.me/1r0pwb6XD

Headline of the Week:

From the Southern Poverty Law Center:

Conspiracy Theory of the Week:

And with that, let’s face it, conspiracy theories are now done. They just don’t get any better than that! It’s all downhill from here, folks!

RJB

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Posted by Bob

Check out Virtual Skeptics episode 15! The Mabus Chronicles…

November 23, 2012

This week on Virtual Skeptics

  • Bob finds out that he could probably practice medicine in Texas;
  • Eve explains why scientific ignorance is political bliss;
  • Sharon encourages you to stay active [this is a news update on some positive skepticism stories for the week];
  • and Tim has nothing for us this week, as it was completely uneventful.

This Week’s Panel:

  • Bob Blaskiewicz – CSI’s Conspiracy Guy web columnist, blogger for Skeptical Humanities and Swift Blog contributor
  • Eve Siebert – Editor and blogger at Skeptical Humanities
  • Sharon Hill – Editor of Doubtful News and author of the CSI’s Sounds Sciencey web column
  • Tim Farley – JREF fellow and creator of What’s the Harm.net,the Skeptical Software Tools blog, and the official Virtual Skeptics Cherub of Canadian Justice!!!

The Virtual Skeptics is recorded live in a google hangout at virtualskeptics.com every Wednesday at 8PM eastern.

RJB

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Posted by Bob

This Week in Conspiracy (23 Nov 2012)

November 23, 2012

It was a veggie pizza and chocolate Thanksgiving in Wisconsin. An odd ritual, but a good time. Nonetheless, another bizarre ritual awaits us! The Week in Conspiracy! Huzzah!

I have never grabbed a more accurate screenshot.

This Week in Calm Down:

A series of tweets came at me fast and furious this week, and I though that I’d line them up and let you make up your own mind about them:

CHEM TRAIL (@lookupCHEMTRAIL) 11/18/12, 11:46 AM
***BREAKING NEWS***CHEMtrail plane shot down over MOJAVE DESERT. The pilot has not been found. More news to follow soon
CHEM TRAIL (@lookupCHEMTRAIL) 11/18/12, 11:47 AM
Did they HAARP Washington DC today???

CHEM TRAIL (@lookupCHEMTRAIL) 11/18/12, 11:47 AMThey are DEATH DUMPING the panhandle of TEXAS right now…and what is the panhandle known for??? That’s right, a whole lotta farmland!CHEM TRAIL (@lookupCHEMTRAIL) 11/18/12, 11:47 AM
I AM CALLING FOR A MASS PROTEST OF evergreen aviation. IT IS TIME TO GET MIDEVIL ON THESE BASTARDS!!!

CHEM TRAIL (@lookupCHEMTRAIL)
11/18/12, 11:47 AM
I know they are spraying, I just can’t see the cloaked planes anymore!

CHEM TRAIL (@lookupCHEMTRAIL) 11/18/12, 11:48 AM

This Week in Mark Dice is a horrid person:

Mark Dice @MarkDice
Muslims love Jesus and believe he was a prophet. Jews say Jesus was a fraud and the bastard child of a lying slut, FYI.

Mark Dice @MarkDice
Why is it that Jewish Supremacists aren’t denounced like White Supremacists or racists of any other kind?
If you think he just hates Jews, you should see what he thinks of Jewish women!

@SarahKSilverman satanic skank
But his disdain for people who are not himself extends to…Thanksgiving Day shoppers?
Mark Dice @MarkDice
Screw any retailer that’s open on Thanksgiving and screw the zombies who go shopping that night. YOU are ruining America.

That’s a lax standard of “ruining”. You show them, crazy guy with bullhorn!
Does he somehow think that he’s IMPROVING America?  He could be at home having a traditional Thanksgiving meal:
Mark Dice (@MarkDice) tweeted at 4:36 PM on Thu, Nov 22, 2012:
I wonder if #Kesha is feasting a dead baby tonight for Thanksgiving.

Conspiracy Theories of the Week:

That’s all for now!

RJB

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