No more antineoplastons? Will the FDA finally slap down Stanislaw Burzynski for good?

Earlier this week, there was a very bad, very credulous story was broadcast. Now, I realize that this is not an uncommon occurrence. Indeed, I'm sure that this sort of thing happens pretty much every day somewhere in the country and even on national media, but on this particular occasion the story was about a man who has become a frequent topic of this blog, namely Stanislaw Burzynski. Burzynski, as you recall, is the Polish physician who runs a cancer clinic in Houston that attracts desperate patients with advanced cancer from all over the world to spend huge sums of money for his treatment, which consist of chemicals he calls "antineoplastons." What attracts these patients to travel thousands of miles and pay tens or hundreds of thousands of dollars? It's the promise, promoted by the Burzynski Clinic and the various shills and minions who are true believers in Burzynski's "alternative cancer therapy," of life when conventional medicine cannot save them. Burzynski claims to have discovered endogenous anti-cancer compounds in human urine (his "antineoplastons"), and now he synthesizes them and administers them to patients. Unfortunately, there is no convincing evidence (or even much evidence at all) that antineoplastons have significant cancer activities or that they work better than conventional therapy, even against advanced cancers. Lately, he's been coupling his antineoplastons with something he calls "personalized gene-targeted cancer therapy," or, as I like to call it, "personalized cancer therapy for dummies."

Unfortunately there are a lot of reporters out there who don't get the message, particularly a credulous reporter from Fox 8 News in New Orleans named Rob Masson, who earlier this week did a story about a patient of Stanislaw Burzynski's and in the process fell for just about every trope arising from Burzynski's cult of personality and pretty much every bit of self-aggrandizing nonsense that Burzynski routinely lays down, to the point where I was thinking that it would be dangerous to play a drinking game where everyone had to drink every time a Burzynski talking point showed up, and the story is only around six minutes long! By the time Masson opines at the end how "after thirty years of doing this therapy," Burzynski is "finally going to the FDA" the you'd be in serious danger of ethanol poisoning. Of course, it never occurs to Masson that perhaps the reason it's been over 30 years is because there's almost certainly no "there" there when it comes to antineoplastons, which is probably why Burzynski is moving on to what I call his "personalized cancer therapy for dummies" and his "rebranding" of antineoplastons as an "antiaging treatment" called Aminocare® genetic solutions.

It's interesting to compare and contrast how the media reports on Burzynski with what's actually going on over at the Burzynski Clinic, because just yesterday morning I became aware of a disturbance in the skeptical blogosphere, a notice, if you will. More about what I'm talking about in a moment, but first let's look at the story Controversial Cure: Doctor defends cancer treatment. You can tell right away from the very title of the story that it's going to be a puff piece "human interest story, and so it was:

It starts out with a woman, who declined to be identified, telling her story. Basically, she was diagnosed with breast cancer but decided to eschew mastectomy and conventional cancer therapy in favor of all manner of woo, which she thought worked for years. Given that the various dubious therapies this woman pursued have, as far as I can tell, no evidence of efficacy against breast cancer, in essence this woman remained untreated until:

And the cancer worsened. She developed tumors and by May 2008 she had fluid in her lungs -- Mary finally sought a doctor's treatment.

She became unconscious and was brought back to life with a massive blood transfusion. She then took estrogen blockers and her symptoms improved. But two years later, the cancer came back, this time in her back. Herbal remedies and pills were no longer an option.

Mary got 16 radiation treatments and, like many cancer patients, she followed that up with chemotherapy. But then heart problems caused doctors to stop the treatment.

Mary's body could no longer tolerate traditional cancer therapies such as radiation and chemotherapy. So she went to Houston to see Dr. Stanislaw Burzynski.

One thing I can tell from even this little bit of information is that the woman had an estrogen receptor (ER)-positive tumor, which might explain why she lived so long untreated. A subset of ER(+) tumors can be pretty indolent and take a long time to grow and spread, even after they've reached stage IV. More than likely, that's the sort of breast cancer this woman had. Not knowing more about her original presentation, I can't say for sure, but knowing her ultimate clinical course, I'm pretty sure that more than likely her cancer would have been curable if she had simply undergone the appropriate treatment when she was originally diagnosed. In any case, we have the story set up in a typical Burzynski hagiography: The patient is portrayed as at the end of the line, and only Dr. Burzynski can save her. He can't, of course, but he's very convincing, except, that is, to people who have a working understanding of cancer biology and molecular biology. To us, his blather about "turning molecular switches on and off" or how he was the first person to propose gene-targeted therapy are obviously nothing more than the arrogance of ignorance that nonetheless leads to failures of medical journalism. That's not to say that the story is all bad; there is the token skeptic in the form of a local oncologist named Dr. Jane Gertle, who quite correctly points out that, compared to Burzynski, who has his patients pay for his "clinical trials," pharmaceutical companies "put their money where their mouth is."

Sadly, the patient, who is referred to as only "Mary," died last week. Unfortunately, that didn't stop this report from saying that although she never "completely kicked her cancer," "she was showing progress." If Mary's outcome represented "showing progress," I'd hate to see what would represent deterioration to this clueless reporter.

This reporter's credulity aside, this is where Burzynski makes two revelations. First, he says:

We never charged patients in clinical trials.

My jaw dropped when he said this, and I don't think Burzynski helped himself at all with this. Think about it. If he truly never charged patients to be on his clinical trials, then that means that he must be charging patients for an unproven drug not approved by the FDA, which he routinely ships across state lines as reported by multiple patients, in direct violation of the consent agreement with the Texas attorney general in the 1990s stating that Burzynski: "(a) cannot distribute unapproved drugs in Texas; (b) can distribute 'antineoplastons' only to patients enrolled in FDA approved clinical trials, unless the FDA approves his drugs for sale; (c) cannot advertise 'antineoplastons' for the treatment of cancer; and (d) on his website and in promotional material and ads must place a disclaimer that the safety and effectiveness of 'antineoplastons' have not been established." If, on the other hand, the Burzynski Clinic actually has charged patients to be on clinical trials, as so many patients have reported, then Burzynski would appear not to have told the truth to the reporter. Either way, it's not good, and I can't figure out why he would say such a thing, and I'm not alone in wondering at the red flag Burzynski's statement raises.

The next revelation was:

Phase two testing of Dr. Burzynski's treatments are now wrapping up, both in Houston and overseas in China and Japan. He says he is eager to get through the next phase.

This statement raises even more eyebrows. First of all, as I and others have discussed time and time again, Burzynski has registered over 60 clinical trials at ClinicalTrials.gov over the last 20 years or so, but has reported none of them. Burzynski has been "wrapping up" his phase II trials at for at least 15 years now and appears no closer to publishing a convincing phase II trial than he's ever been. I call BS. As for these clinical trials in China or Japan, I haven't been able to find any evidence of them, other than references to the Japanese National Cancer Institute reporting that antineoplastons did not work in their studies and vague references from believers to research being done in Japan. None of it's been published, as far as I can tell, at least nothing recent that contradicts existing studies that have failed to find a benefit from antineoplastons.

It is particularly amazing that Burzynski would make such claims in light of recent events. Not long ago, bloggers noticed that Burzynski had scrubbed antineoplastons from the Burzynski Clinic website in a recent update. At the time I characterized the observation as "rather interesting," and thought that maybe it was due to a recent warning letter sent to the Burzynski Clinic by the FDA telling it to cease and desist advertising antineoplastons because doing so is promoting an unproven drug. Given how fast and loose Burzynski has appeared to play with human subjects protection regulations over the years, one wondered if something more was going on.

Maybe there was, which brings us back what might really be going on at the Burzynski Clinic. Yesterday morning, I awoke to multiple Twitter notices and e-mails pointing out that one of our British skeptical friends, Keir Liddle, had posted some news over at Josephine Jones' blog while, five hours behind the UK, I slept. Then I had to go to work and couldn't revisit the topic until last night. What I learned is that the parents of a patient at the Burzynski Clinic had posted on their Caring Bridge blog that the Burzynski Clinic is currently undergoing an audit by the FDA and that the Burzynski Clinic is, for now, shut down when it comes to administering antineoplastons. Like Keir, I won't reveal the name of the patient, but I will quote a bit more than he did from the blog:

The Burzynski Clinic is going through some issues right now. They are in the process of getting audited for the past month by the FDA. The FDA has also gotten approved to continue their audit for another month. I believe it was August, the FDA stopped new pediatric patients because a child had went into a tumor related coma and did not get enough water during treatment, thus spiking the sodium level to a fatal level. Now, in January, for reasons unknown to me, the FDA has suspended new adult patients from the ANP as well. I do not know when the new patients will be allowed again or if any restrictions on current patients will also follow. Friday, the Burzynski Clinic shipped us 3 months of ANP, where they normally only ship 2 weeks. They are being proactive and making sure we have the meds she needs just in case any medicine production is stopped. Apparently, a person who monitors the medicine production had a serious medical emergency. This, along with the FDA auditing has us a little on edge waiting to see how it all plays out. Even though this is bad news for the clinic, there is silver lining because when this is finished, the clinic should be moving into Phase 3 of the clinical trail and hospitals and doctors should be able to start prescribing the ANP and doing clinical trials of their own. To my knowledge, Dr. Burzynski has the only medicine not sponsored or picked up by a pharma company. I think that's why things don't work like they do for normal drug approval.

So much for Burzynski's frequent claim that antineoplastons are nontoxic. Dangerous levels of hypernatremia (high sodium) are a known and expected complication of administering a drug as its sodium salt in such enormous quantities, and I do mean enormous quantities. Indeed, the dose of sodium that can be administered from the high dose antineoplaston protocol can be as high as 148 g per day from the high dose antineoplaston formulation, which for an 88 kg patient would require that 12 L of free water be administered in order to prevent massive hypernatremia. If this patient's family's account is true, it would appear that a child died of hypernatremia while under Burzynski's care, and that finally got the attention of the FDA. I have no idea if what this patient's family is saying is accurate or not, but they don't have any reason to lie. Moreover, if this really is what Burzynski is telling his patients (and it sounds as though it is), we should find more patients telling the same tale soon enough.

What would be even better would be if we soon hear of the FDA bringing an enforcement action to stop Burzynski from treating anyone else with antineoplastons and investigate—I mean really investigate—what Burzynski was really doing all those years when he claimed to be signing up patients to phase II clinical trials while the Burzynski Clinic charged tens and hundreds of thousands of dollars for antineoplaston therapy, much of which had to be paid out-of-pocket because insurance companies and government health plans quite reasonably won't pay for unproven therapies. Sadly, I fear that, should the FDA finally shut Burzynski's antineoplaston operation down, it won't stop him. It wouldn't surprise me at all if he packed up his clinic (or part of his clinic) and moved it to, say, Tijuana or Costa Rica or someplace else where patient protections are—shall we say?—not quite as rigorous as they are in most industrialized countries. There, Burzynski's clinic could function along with all the other alternative cancer clinics. Indeed, his Houston operation could even become a "feeder" for his out-of-country operation, applying his "personalized gene-targeted therapy for dummies" approach. Or he could even dump antineoplastons altogether, pivoting to switch completely over to some combination of his "personalized gene-targeted therapy" and/or sodium phenylbutyrate.

No, as optimistic as I've become that maybe—just maybe—the FDA has finally gotten serious about Stanislaw Burzynski and the Burzynski Clinic, I'm under no illusion that even if the FDA shut him down it would mean the end of Burzynski's "alternative" cancer treatments.

But it would be an excellent first step.

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I’m under no illusion that even if the FDA shut him down it would mean the end of Burzynski’s “alternative” cancer treatments.

Well no, if all else fails for a quack there's always Tijuana.

Curiouser and curiouser with each new twist of the tale.

I'd love to see the FDA finally revoke or cancel the approval for the lone Phase III "never-gonna-happen" trial. That would remove a major "talking point" for Scuzzbag Stan and all his shills.

I am also curious as to how this new development will affect the release of the second of Merola's BS SB commercials due out "any day now."

By Marc Stephens … (not verified) on 08 Feb 2013 #permalink

Where did our resident Burzynski supporter get the idea that the FDA has no jurisdiction in the state of Texas? They have an branch office right there in Houston!

I suppose we can expect his same wall-of-text out of touch with reality copypasta to start appearing on this thread any second now.

By Marc Stephens … (not verified) on 08 Feb 2013 #permalink

The patient's blog mentions the clinic shipped three months worth of ANP. Isn't Stan prohibited from shipping them across state lines? I'm presuming they're out-of-state...there's a 1 in 50 chance they are in the same state, after all.

Can't the Feds nail him for that infraction all by itself?

By Marc Stephens … (not verified) on 08 Feb 2013 #permalink

"To my knowledge, Dr. Burzynski has the only medicine not sponsored or picked up by a pharma company."

Laetrile, black salve... I think there are lots of medicines not sponsored or picked up by a pharma company. Of course, there's a reason why they aren't.

I can confirm that the patient in question is not in Texas.

MedTek,

I realized a statistician would blanch at my "1-in-50" chance, because it doesn't take into consideration the varying populations of each state, but /i was trying to simplify.

So why can't they nail him on that infraction all by itself? I'm sure it's easy to document packages going out of the clinic.

Thanks for keeping us up to date via your tweets yesterday on this story. I was stealing your stuff and posting it here!

By Marc Stephens … (not verified) on 08 Feb 2013 #permalink

"doctors should be able to start prescribing the ANP and doing clinical trials of their own."

Could other doctors have done clinical trials of their own? I mean, other than Burzynski squatting on his patent like a dragon on his hoard? I've wondered about this with all the drivel from the pro-Burzynski troll.

Before the consent agreement, it seems to me, any doctor who wanted to could have purchased antineoplastons from Burzynski and run a proper clinical trial, and even afterwards they could have gotten related chemicals if I've understood Orac's explanations correctly.

@MSII

There are ways he can get around that. For example, part of Burzynski's schtick is that the patient's local physician supervise their care and treatment. That might make them a study investigator. He could then ship the drugs to the physician as part of the "study", avoiding unapproved interstate sales regulations. If he's shipping antineoplastons directly to the patients, that could be a violation, since it would constitute interstate sales of an unapproved drug.

MSII,

Where did our resident Burzynski supporter get the idea that the FDA has no jurisdiction in the state of Texas?

He appears to have misunderstood part of this article by Ralph Moss which states:

This current FDA official read from a former FDA agent's letter to a Congressman stating that "Dr. Burzynski may manufacture and sell antineoplastons in Texas, where the FDA lacks jurisdiction."

Correct me if I'm mistaken, but I understand this to mean that he may manufacture and sell antineoplastons in circumstances in which the FDA does not have jurisdiction, not that they have no jurisdiction in Texas at all.

By Krebiozen (not verified) on 08 Feb 2013 #permalink

Kreb,

How could anyone in their right mind* think the FDA would not have jurisdiction in Texas? Texas hasn't succeeded from the USA quite yet. And the FDA has an office right there in Houston, not far from Stan's little shop of horrors.

*There's my answer right there.

By Marc Stephens … (not verified) on 08 Feb 2013 #permalink

@MSII

Right, it's just limited to sales. FDA cannot regulate the sale of unapproved drugs within a state, just across states. So, he could advertise locally without running afoul of FDA, but couldn't advertise outside of Texas. That doesn't consider, however, state laws on the advertisement and sale of unapproved drugs.

My sense is that the Clinic gives the package to someone who then mails it to patients.

By Bob Blaskiewicz (not verified) on 08 Feb 2013 #permalink

@Bob - isn't Stan damned by the words of his own patients? In the blogs and posts that have been quoted on "TOBPG" doesn't it directly state, on numerous occasions, that ANP was shipped across state lines (and internationally), plus stating (directly) that patients were told they were accepted as part of various clinical trials?

That seems to be the tip of the iceberg, as just about all (if not all) of the patient stories contain direct contradictions to the "message" that Stan has been pushing for years.....how exactly does that get reconciled, when you have patients telling a completely different (and contradictory) story than the direct quotes from Stan himself?

There are ways he can get around that. For example, part of Burzynski’s schtick is that the patient’s local physician supervise their care and treatment. That might make them a study investigator. He could then ship the drugs to the physician as part of the “study”, avoiding unapproved interstate sales regulations. If he’s shipping antineoplastons directly to the patients, that could be a violation, since it would constitute interstate sales of an unapproved drug.

Indeed, we've heard from patients and doctors that he requires the local physician to sign certain forms. Several doctors have complained that he then listed them as co-investigators based on these forms.

By W. Kevin Vicklund (not verified) on 08 Feb 2013 #permalink

Oh please let this herald the downfall of Sh¡tbag Burykidski.

Little Luna Petagine (sadly deceased) had hypernatremia that was so bad that her oncologist at GOSH* thought the levels were a mistake.

The sight of that tiny little girl, ravaged by Stan the Scam's "treatment", will never leave me. When a paediatric oncologist is on the verge of tears then you know something's terribly wrong with the situation.

That twisted, egomaniacal fantasist has so much blood on his hands that they can never be made clean. He's made millions in profit from the desperation of terminally-ill people, the parents of dying children, and the goodwill of the public who donate because they want to believe in miracles.

How he or his band of deluded supporters and enablers manage to sleep at night is beyond me. That goes double for those who divert patients from real treatment and funnel them toward Stan's guinea pig farm.

I'll be eagerly awaiting further news. Thanks to all for the updates/info.

Most Burzynski patients think they're paying for the phenylbutyrate/antineoplastons but they're not.

I've always found Denise D's story on The Other Burzynski Patient Group the most elucidating (thanks for all your work highlighting their stories Bob Blaszkiewicz) for the Clinics intricacies She's left us a real insight into how they make their money in her bill for May 2008:
"Consultation @ $750.00
Nutritionist @ $350.00
PET / CT Scan (Houston Imaging) at
$1,200.00
Xeloda @ $2,897/month
Zolinza @ $2,217/month
Tarceva @ $4,200/month
Sodium Phenylbutrate (aka PB) and “Case
Managment” @ $4,500/month
Zometa @ $1,087/month
That puts my total medication expenses for
May at $17,901.00" http://teamdenise.org/2009/05/burzynski-clinic-monthly-charge-–-may-2009

I worry that by branding the fee for phenylbutyrate as Case Management he'll get away with the statement he's not charging for clinical trials.

Denise D provides the evidence for this in one of her many struggles to pay the $45000/month the clinic charged her:
"I’ve been saying the charge is for the
monthly supply of Sodium Phenylbutyrate
(PB) meds from the Burzynski Clinic, butI’ve come to be informed that I am a
clinical trial , and as such, do not pay for
medication. What I pay for is the case
management – for medical case management. I get the PB meds for “free”. " http://teamdenise.org/2009/11/burzynski-clinic-monthly-charge-–-november-2009/

Its important Denise D's story is read and made more widely known since its too late for someone to put her in a documentary.

I don't know how the state lines selling is happening but if we listen, the patients will tell us.

By Humble Doctorow (not verified) on 08 Feb 2013 #permalink

Oops, GOSH - Great Ormond Street Children's Hospital, an amazing institution that treats and saves children from all over the world, and performs invaluable research.

I'm aware of Burzynski's claim that he bills only for the various services (such as the "case management" fee) and that patients get the antineoplastons for free. To me, it's a pretty obvious way to get around the the generally agreed upon ethics of clinical trials that patients do not pay to be part of a clinical trial. Be that as it may, in the U.S., it is very clear that services related to a clinical trial that not considered part of the standard of care should also not be charged to the patient. Moreover, for patients with insurance, the insurance company will generally pay for services considered routine and part of the standard of care, for instance follow-up CT scans that aren't more frequent than what is usually recommended, even if the patient is on a clinical trial. Insurance generally doesn't pay for Burzynski's services, even the ones not related to antineoplaston treatment, which should tell you something.

For instance, if those drugs (Xeloda, Zolinza, Tarceva, etc.) are considered standard of care for the cancer being treated, insurance companies will pay for them, even if they are being administered as part of a clinical trial. An example would include, for instance, a trial testing, say, Xeloda versus Xeloda plus an experimental drug. The Xeloda would be covered because the patient would be getting Xeloda anyway, even if not on the clinical trial. However, there have been reports from patients that Burzynski strongly discourages that and that he wants patients to buy their drugs from a pharmacy that he owns. (Indeed, that was part of the basis of a recent complaint to the Texas Medical Board, that Burzynski made a patient purchase her drugs from a pharmacy and didn't disclose that he owned the pharmacy, while selling the drugs at inflated prices. I think the patient used a phrase something like "used me as a human ATM" machine, if memory serves correctly.) Insurance companies will even pay for some off-label uses of such drugs, although sometimes it will take a phone call from the doctor explaining his rationale to the insurance company's medical people to make it happen. Yet, insurance won't pay for those drugs as prescribed by Burzynski.

Does he just put the names of various chemotherapeutic agents. into a hat, and then pick a handful at random? Surely mixing all those drugs is unwise at best.

Even if he was shut down you can guarantee his defenders will just fold it into their conspiracy theory that the FDA and "big pharma" hounded him out.

It won't occur to them at any point that if his treatment were actually proven to work over the last 20 years he would have long been out of clinical trials by now and coining it so fast that *he* would be big pharma by now.

I didn't know that services related to a clinical trial including those not part of standard treatment shouldn't be charged to the patient. I take it most Burzynski patients don't either.

What that clinic gets away with is very depressing.

By Humble Doctorow (not verified) on 08 Feb 2013 #permalink

I read another account today where a patient failed Burzynski care, but expressed gladness that she participated because it would "help other patients".

Not if the data remain secret... doubly so for failures.
(allow me to plug http://www.alltrials.net/)

I didn’t know that services related to a clinical trial including those not part of standard treatment shouldn’t be charged to the patient.

The exception, of course, is for uninsured patients, who are on the hook for all routine standard-of-care treatments as well. I realize that's an alien concept to someone from the UK, and maybe the US is finally starting to put an end to the problem of the uninsured. Even if it is, it will be several years before it happens.

I have faith that, sometime in the next couple of years, the FDA's investigation will result in Burzynski's receiving a letter of complaint. Oooh, it will sting.

By Dangerous Bacon (not verified) on 08 Feb 2013 #permalink

No, as optimistic as I’ve become that maybe—just maybe—the FDA has finally gotten serious about Stanislaw Burzynski and the Burzynski Clinic, I’m under no illusion that even if the FDA shut him down it would mean the end of Burzynski’s “alternative” cancer treatments.

I presume there is no chance at all of Burzynski facing any legal consequences from a child apparently having died from malpractice at his clinic?

By Andreas Johansson (not verified) on 08 Feb 2013 #permalink

@Andreas - it depends on if the child's parents decide to either sue or file a complaint.

Since Stan is so adept at slithering through loopholes, what theoretically could the FDA get him with?

I believe it was August, the FDA stopped new pediatric patients because a child had went into a tumor related coma and did not get enough water during treatment, thus spiking the sodium level to a fatal level. Now, in January, for reasons unknown to me, the FDA has suspended new adult patients from the ANP as well.

I wonder if Adam M.'s experience in June was the reason for the ban on adult patients. It's unclear when the child actually had the severe hypernatremia and whether the child actually died (fatal levels doesn't necessarily indicate death), so it's quite possible Luna P. was the child. The time delay between patient symptoms and start of ban would be approximately the same - a little faster for the adult ban, but that may be due to elevated scrutiny.

I do remember a report from last fall that no new pediatric patients were being accepted. I had guessed that to be due to all but one of the Phase II trials having been closed by January 2012. In fact, it was what put me onto monitoring the clinic website for its annual update.

By W. Kevin Vicklund (not verified) on 08 Feb 2013 #permalink

My sense is that the Clinic gives the package to someone who then mails it to patients.

Well, there's the case of Barbara Murphy (whose Web site appears to have been rather sorely hijacked), but once this came to light, they must have realized that they were already staring at RICO's uvula.

If, without asking for it, this patient had three months', rather than two weeks', worth of "treatment" shipped to his or her home -- was this person also billed for, um, three months' worth of "case management"?

Insurance companies will even pay for some off-label uses of such drugs, although sometimes it will take a phone call from the doctor explaining his rationale to the insurance company’s medical people to make it happen.

I thought I'd heard that there was a trend toward insurance companies' using compendia like the NCCN Guidelines® in deciding what to cover ... ? But maybe I made that up.

By Xplodyncow (not verified) on 08 Feb 2013 #permalink

Another example of Stan's incompetence in reading MRIs.

This was just tweeted to #BurzysnkiSaves, for some reason, to ask his opinion. I'd believe the local oncologist:

Xena@XenaRaider

Local CT scan.My Onco claims cancer growing while on #Burzynski treatment. Dr B claims significant reduction on same CT. Who is correct?

By Marc Stephens … (not verified) on 08 Feb 2013 #permalink

@Xplodyncow

Here's a sample insurance policy that explains how they decide whether or not an investigational drug/procedure will be covered.

I didn’t know that services related to a clinical trial including those not part of standard treatment shouldn’t be charged to the patient.

Generally speaking, if a drug, device or procedure is not part of the standard of medical care (i.e., being done only because the person is in a clinical trial), then it is considered experimental. If it's experimental, the subject is already taking on additional risk just by undergoing the procedure. It's not considered ethical to charge someone for the "privilege" to take on more risk.

Regarding the tweet above, I should have said CT scans, not MRIs.

By Marc Stephens … (not verified) on 08 Feb 2013 #permalink

@MSII - it is in the best interest of Stan to portray his treatment in the best possible light, so he can continue to milk his patients until they die.

Lawrence,

He has a long history of misreading scans, either by incompentence or deliberately lying to tell the patient some false good news. The OTHER Burzynski Patient Group has documented at least five examples of this. It's a pattern; his MO.

By Marc Stephens … (not verified) on 08 Feb 2013 #permalink

@MSII - that's exactly the point. On numerous occasions, patients were told that the results of their scans were one thing, but in actuality, the results were far worse (i.e. the tumor was dying from the inside vs. regular necrosis because it was out-growing the blood supply) - this seems to happen so regularly that I suspect that the Burzynski staff were working off of a "playbook" on what answers were to be given when certain, more dire conditions started to present themselves.....all as a means of misleading the patient and continuing to milk them for money until it was far too late to do anything else....these people are all monsters.

I am skeptical of both the FDA and Burzynski, and will be wary of any conclusory processes. But I would like enough accurate information surfaced to end the mystery cult aspects of the Burzynski Clinic and the ANP saga.

He owes both the public, and all those phase II patients some kind of accounting. Hell or high water (both in Houston!), show us the beef.

Right, it’s just limited to sales. FDA cannot regulate the sale of unapproved drugs within a state, just across states. So, he could advertise locally without running afoul of FDA, but couldn’t advertise outside of Texas. That doesn’t consider, however, state laws on the advertisement and sale of unapproved drugs.

Although FDA's authority is based on the regulation of interstate commerce, FDA can and has intervened in cases in which protagonists claimed the drug in question was made in state X and only sold in state X. FDA has been successful by demonstrating one or more chemicals, diluents, etc. used to manufacture the drug was in interstate commerce, thereby bringing the drug in question under FDA authority. IIRC this was one of the claims in US v Regenerative Sciences.

By Agrippina (not verified) on 08 Feb 2013 #permalink

Does anyone smells goose cooking?

By Marc Stephens … (not verified) on 08 Feb 2013 #permalink

I guess that's why we have the FDA. It'd be great to see actual treatments receive this much success. Namely researchers doing excellent studies about this such as China's Rongxiang Xu.

MSII:

I certainly hope so.

By Composer99 (not verified) on 08 Feb 2013 #permalink

Maybe it's my own ignorance of the American medical system (or of medicine, law, and/or reality), but I'm hopeful that Burzynski's "clinic" won't be around in a couple of years, whether in Houston or anywhere else. After he threw his own physicians under the bus I'd bet he'll have a hard time hiring new underlings, and he's not getting any younger. Add to that the FDA's current restrictions on his advertising practices and hopefully a couple of criminal charges or malpractice suits, and I think we'll be seeing the last of Stanny in short order. I'm a "glass is half full" kind of person.

By Neil Johnson (not verified) on 08 Feb 2013 #permalink

Ronald,

Rongxiang Xu? You mean the butthurt lunatic who sued because he didn't get a Nobel Prize? And what do you mean by "treatments receive this much success"? Are you talking about Burzynski's treatments? What success are you talking about?

Do you have any idea what we're discussing here?

By Marc Stephens … (not verified) on 08 Feb 2013 #permalink

Is there anything to prevent Burzynski from rebranding ANPs/Aminocare as "nutritional supplements" rather than drugs, and then sell them via MLM (with the requisite quack miranda statement), with the standard wink-wink-nudge-nudge under-the-radar claims that they can cure cancer? Shills are a dime a dozen, it seems.

thenewme,

Long time no speak. Hope you're well.

Your idea might work for the oral version, but it would be hard to sell supplements that require a Hickman line directly into the heart.

Never fail however...I'm sure he's got some kind of "exit strategy" planned. Especially now that the jig might be up with ANPs.

By Marc Stephens … (not verified) on 08 Feb 2013 #permalink

Hi MSII! I'm doing well, thanks. Just really, really busy these days since I've moved to the opposite side of the world.

I dunno, as long as quacks are free to make sh!t up as long as they call their woo "supplements," why would he bother with the Hickman line or IVs? Why couldn't he just claim that he's formulated some new, improved ANP/aminocare pill that is just as effective for cancer, aging, weight loss, immune support, and anything else? Leave it to his shill associates to pose as cancer patients on message boards to spread the word about how they were cured by these miracle supplements?

Seriously, just go to BCO and see the technique live in action.

Just really, really busy these days since I’ve moved to the opposite side of the world.

Please, no Time Cube.

Glad you're OK. Would you be willing to tell us what part of the world you moved to? (No need to be too specific, a continent or country will do if you want to protect your anonymity.)

I know about the online shills very well. Just yesterday I was reading comments on a South African skeptic blog where people are shilling "Faith Drops" that are a version of MMS.

There's someone on Orac's other blog passionately plugging magic salt water called ASEA (she sells it, of course). You got it--both are good for cancer and AIDS, and everything else, but the MLM salespeople can't say that out loud. They let others do it via YouTube testimonials and corporate
infomercials.

Did you ever look into Mannatech? Another MLM "cure-all" that was nothing but sugar. ABC News snuck a hidden camera into one of their sales meetings a few years ago where their network marketers were coached on what they could say and how they could say it in order to stay legal. Meanwhile, a reporter caught one of their reps on hidden camera telling her it would cure cancer.

Don't give Stan any ideas!

By Marc Stephens … (not verified) on 08 Feb 2013 #permalink

@thenewme

He'd need to show that it has either a) been used as a food/nutritional supplement before or b) provide evidence that it is safe when used as a food/nutritional supplement. If he can't do that, he won't get FDA approval to market it as a supplement. Granted, there's also the whole problem of it being a precursor to a known drug, so marketing it as a supplement would mean he is selling something that is really a drug without approval.

He might get away with it for a while, though, before the FDA can get around to investigating.

LOL, nothing so novel as the Time Cube! Just moved from USA to Australia with all that entails, plus I grossly underestimated the culture shock I'd be in for!

Just moved from USA to Australia with all that entails, plus I grossly underestimated the culture shock I’d be in for!

I had my eye on an overwinter gig at Amundsen-Scott before it sank in that I'd never pass the physical.

Is there a lot of woo evident in Australia? I don't imagine the typical Aussiewould have much tolerance for homeopathy, acupuncture or naturopathy. There is a pretty sizeable scientology presence in Melbourne, and they bring along their own brand of woo, especially via the CCHR. Jan Eastgate ran the Australian division of the CCHR and is quite notorious in her own right.

So you're in the land of Ratbags.com, aka Peter Bowditch, a mortal enemy of Timmy Bolen and very brave skeptic. He's got years worth of correspondence on his site with cancer quacks, including one particularly odious fellow in Ottawa, Ontario, in my own country. Peter has also taken on Burzynski via my username inspiration.

By Marc Stephens … (not verified) on 08 Feb 2013 #permalink

@Narad, now THAT would be some serious culture shock!

@MSII, I'm actually shocked at how much woo I'm seeing here. In fact, my new Aussie private health insurance policy specifically covers acupuncture, Chinese herbalism, Western herbalism, iridology, homeopathy, aromatherapy, and more! ACK. Unfortunately, woo appears to be pretty universal. I'm in the Melbourne area but haven't yet run across any scientology. I vaguely know of Peter Bowditch but didn't realize that he's here, and I'm not familiar with Jan Eastgate.

Up till now, I've been focusing on getting settled and figuring which way is up, literally! It's been an adventure, for sure!

Here's a link to the best part of Peter Bowditch's site. While he deals with international issues he tends to concentrate on Australian matters, so I thought you might want to take a look when you have some time.

He also contribues to an Australian science magazine and speaks on issues of quackery and woo.

He usually posts some new content about once a month but has tons of archived material. When I first stumbled into this world of woo his was one of the first sites I found and literally spent a week reading through his archives. He has some memorable correspondence with the real Marc Stephens.

(Almost as memorable as Ken White aka Popehat, who coined the phrase "Snort my taint" as his reply when threatened by Stephens.)

By Marc Stephens … (not verified) on 08 Feb 2013 #permalink

Oops, I need some anti-aging ANPs. I'm getting forgetful in my old age. Here's the promised link:

http://www.ratbags.com/rsoles/

He also HATES Meryl Dorey and the entire AVN, and the feeling is quite mutual. I believe Meryl Dorey has either brought or threatened legal action against him.

By Marc Stephens … (not verified) on 08 Feb 2013 #permalink

@Narad, now THAT would be some serious culture shock!

I actually have an acquaintance who did a support stint there when Raytheon had the contract. Probably not overwinter. I am, however, saddened to learn as a result of this that Nicholas Johnson took his own life in December. Big Dead Place was a fantastic resource when I was seriously looking into an SPT job.

^ November

MSII - That ASEA thread is amazing. I howled with laughter when Ms Magic Water linked to what she claimed was a definitive double-blind study in humans, that turned out to be intra-peritoneal administration in bunny rabbits.

I also love how she started off as politely deferential (because of the assumption that the SBM crowd would fall for her patter) and moved into caps-lock rage territory when her delicious copypasta was pointed out and questioned. Simply fabulous.

Thenewme - I was telling my partner about the Burzynski Shill Squad last night. She was incandescent with anger when I explained the whole situation. We're both really laid back, but sCAM artistry turns us into flame-eyed deadly medusas, especially as we both have serious illnesses and have been zeroed in on before.

Glad the move went well!

A blogger has colleceted some of those most offensive tweets from the idiot posing as #BurzynskiSaves on Twitter, who we all suspect is really Eric Merola. He is one of the lowest forms of scumbag life I've ever encountered.

Just this morning he called someone a C**T, but I don't think that post made it into this little collection.

If I were Burzynski I'd be so proud to have this cretin representing me.

http://storify.com/JimFriedman/burzynskisaves-scatological-profanity?ut…

By Marc Stephens … (not verified) on 09 Feb 2013 #permalink

This is interesting, and might answer soeme questions how Stan the Man can get away with shipping ANPs to Europe.

A British blog found this company, called Pediatrica, in San Bruno, California. They claim to be "patient's advocate" in getting ANPs to children in foreign countries. This service is not available to patients in the USA.

Read the "Products" and "About Us" pages. The "Video" page just links to the Merola circle jerk and some other testimonial videos. The "Publications" page lists a handful of "papers" and links to BS SB's own website.

In order to buy ANPS you need to scan and e-mail a prescription. But what doctor can write a prescription in Europe or Asia for ANPs?

This entire site looks VERY suspicious. Is it possible BS SB actually owns it and it's a front?

http://pediatricausa.com/home

http://pediatricausa.com/home

By Marc Stephens … (not verified) on 09 Feb 2013 #permalink

Cut-and-paste fail. The second link should have been to the blog that pointed out the company shipping ANPs. There's some interesting new information in this blog from a European perspective.

http://majikthyse.wordpress.com/2013/02/09/the-burzynski-soap-opera/

This is from the Informed Consent release Stan's patients sign:

If your child is injured as a result of participation in this treatment, emergency care will be made available by the hospital and billed to you as part of your medical expenses. No financial consideration or compensation will be provided for a research related injury.

By Marc Stephens … (not verified) on 09 Feb 2013 #permalink

Here's the consent form for "Protocol BT-14" that patients sign. Note it dates back to 1996. I'd love some of the health care pros who are familiar with this kind of legal paperwork here to look it over and give opinions.

As far as I know this is the first time we've ever seen an actual, hard-copy consent form from the clinic.

http://web.archive.bibalex.org/web/19970708052944/www.cancermed.com/bt-…

By Marc Stephens … (not verified) on 09 Feb 2013 #permalink

elburto,

Yes, Tracy King from ASEA will pop up every few weeks on the thread at SBM when she finds a new YouTube video with bright dazzling computer animation. She fails to understand all the "evidence" she has provided, that she finds compelling, has come directly from the people who own the company and are selling the magic salt water. Like no one has ever lied before to sell a product.

"I don't need scientific studies, I've seen how well it works with my customers!" she arrogantly decalres. "Why don't you all just try it before you condemn it?" she laments. "Time will tell who's right!" she prognosticates.

By Marc Stephens … (not verified) on 09 Feb 2013 #permalink

Wow--he sells them ANPs. then when they die he sells them an online memorial.

Any thought on Pediatrica? How can they fill overseas prescriptions for ANPs?

By Marc Stephens … (not verified) on 09 Feb 2013 #permalink

Any thought on Pediatrica? How can they fill overseas prescriptions for ANPs?

Not yet. "Antineoplastons.us" has a registration address of, shall we say, a seemingly unrelated business.

This seems extremely dicey.

A refund for purchased product will be granted if said item is returned unaltered to the shipper, making said returned items sellable and if received within 30 days of purchase.

The relevant regulatiion is CPG 460.300. Now, Erwin is plainly not a pharmacist, but I suspect similar considerations apply, particularly given that a prescription is "required." The next step would seem to be placing an order with an obviously faked prescription and seeing what happens.

(Next step for an enforcement agency, that is. I would not recommend trying this at home.)

So he's selling ANPs out of a shopping mall from a Laser Tag outlet? Nice.

BTW, one of the "games" he offers is a presidential assassination simulation called "Protect The President." Nice.

This guy has to be a business partner of BS SB somewhere down the line...

I still want to know how any doctor, anywhere on the planet, can write a prescription for ANPs that these guys in California can then fill.

By Marc Stephens … (not verified) on 09 Feb 2013 #permalink

So he treats returning ANPs like sending back a pair of shoes from Zappo's.

I'd love to buy some injectable medication that someone else has already bought and returned.

By Marc Stephens … (not verified) on 09 Feb 2013 #permalink

@MSII

If your child is injured as a result of participation in this treatment, emergency care will be made available by the hospital and billed to you as part of your medical expenses. No financial consideration or compensation will be provided for a research related injury.

Thanks for the link to that protocol packet. I'll have to give it a lookover when I have some time. To address your question about the above quote text, that's actually pretty standard for informed consent forms. Investigators can't foresee all possible injuries that can happen. It's pretty normal for an investigator to offer help providing appropriate medical care to deal with any injuries that may occur, but seldom do they cover it with research funds. They'll bill the costs for medical care to the insurance company or subject/parent as appropriate.

Just about every research protocol involving medical or psychiatric procedures contains some form of this statement. So, that doesn't raise any red flags for me about Burzynski's form. What is interesting, however, is the lack of any statement about what will be covered by research funds, what the subject will be responsible for paying and what remuneration, if any, the subject might accrue for being a volunteer. Usually, there would be some statement about how procedures and drugs that are part of standard care will be billed to the insurer, as usual, but that the study drug will be paid for by the investigator. If subjects were going to be charged for the study drug/procedure, then they should be informed of that in the consent form. That's a pretty big thing to leave out.

A note has been sent to a California regulatory body. We'll see what happens.

Cool, Narad. good for you. Let us know if/what you hear.

You've just become a cog of Big Pharma suppressing the cure, y'know. :)

By Marc Stephens … (not verified) on 09 Feb 2013 #permalink

If they're acting as unlicensed pharmacists and selling/shipping unapproved drugs, wouldn't the FDA like to know as well?

By Marc Stephens … (not verified) on 09 Feb 2013 #permalink

If they’re acting as unlicensed pharmacists and selling/shipping unapproved drugs, wouldn’t the FDA like to know as well?

Gotta start somewhere. I don't know the jurisdictional issues.

Elburto, bwaahahaha - I know what you mean! With cancer being a main target of these scams, it turns me into a flame-eyed medusa sometimes, too! That beats some of the names I've been called over at the breast cancer support forum, hehe!

Todd W,
Aren't they already marketing/selling Aminocare as a "supplement?" I don't know if they've ever provided evidence (ha!) that it's safe when used as a food/nutritional supplement, but there sure are a lot of sellers out there selling by testimonials, if not outright claims, that it treats cancer. They've found a pretty lucrative gig, I think, shilling at target-rich forums populated by lots of real cancer patients.

On the breast cancer support forum I visit, there are several *supposed* breast cancer patients who share their personal testimonials about the miracle that is ANP/Aminocare. They also set up and promote scammy quack resources like their "breast cancer think tank," preventcanswers(dot)org, breastcancerchoices (dot)org, annieappleseedproject, etc., shilling for Burzsynski and all sorts of other woo. Gaaaahhh!

The information Orac omits is that the alternative treatments worked for 7 years.

Elixa,

What what what?

By Marc Stephens … (not verified) on 09 Feb 2013 #permalink

Sorry, that should have been Eliza. The Z and X keys are too bloody close on my keyboard for my chubby digits.

By Marc Stephens … (not verified) on 09 Feb 2013 #permalink

thenewme,

You mean they're buying the capsules for "anti-aging" and self-treating for cancer?

Maybe you're right and that's part of Stan's big plan. I had no idea that was going on.

Are the ANPs in the anti-aging capsules the same as he pumps into cancer patients?

By Marc Stephens … (not verified) on 09 Feb 2013 #permalink

Oh, now I understand Eliza's comment. I guess she didn't read Orac's explanation that her kind of cancer can allow patients to survive a long time. Nothing to do with Stan, or any of the other woo she tried.

I guess Eliza, in her haste to defend Stan, didn't read this written by a breast cancer surgeon and PhD researcher:

One thing I can tell from even this little bit of information is that the woman had an estrogen receptor (ER)-positive tumor, which might explain why she lived so long untreated. A subset of ER(+) tumors can be pretty indolent and take a long time to grow and spread, even after they’ve reached stage IV. More than likely, that’s the sort of breast cancer this woman had.

By Marc Stephens … (not verified) on 09 Feb 2013 #permalink

I just watched the clip again. Eliza, it wasn't Burzynski's junk that she claimed "worked" for seven years, it was the "serum from Japan" that she was taking. After seven years (and as Orac explained her cancer gave her a long survival) her cancer started to spread. So the "serum from Japan" did nothing as the progress of her cancer likely would have been the same anyway without the serum. It was only after metastasis, and giving up on herbal potions that she went to Stan.

By Marc Stephens … (not verified) on 09 Feb 2013 #permalink

MSII,
Yeah. Take a look sometime at the BCO support forum. They share miracle stories, supplement regimens, sources, and give each other all sorts of medical advice under the guise of "just sharing information." Compounded hormone therapy, mega-supplements, coffee enema methods, alkalinization diets, root canal removal advice, you name it....it's there, marketed directly at breast cancer patients! Coincidence, perhaps, but in my experience there, all or nearly all of those "pa'tients" hawking such BS also just so happen to be affiliate marketers, MLM'ers, or other types of shills.

AminoCare comes in several varieties of pills and also creams, for your convenience! Ack.

Who the heck is Eliza?

thenewme,

Any idea what the "serum from Japan" might be? Have you ever encountered it on "the dark side"?

By Marc Stephens … (not verified) on 09 Feb 2013 #permalink

Eliza thinks she "caught" Orac hiding some vital information that Burzynski kept the woman in the clip alive for seven years.

She could have used Hershey's Syrup and it still would have taken seven years for her kind of cancer to spread.

Oh wait, I forgot: sugar feeds cancer. And chocolate is mildly acidic.

By Marc Stephens … (not verified) on 09 Feb 2013 #permalink

Actually, Eliza says it's the "alternative treatments" that worked for seven years, not Burzynski. My apologies, but either way, the "alternative treatments" did NOT work for seven years. She had a slow spreading form of cancer.

And her accusatory tone still applies, as if Orac was suppressing that alternative treatments "work." They don't.

By Marc Stephens … (not verified) on 09 Feb 2013 #permalink

@Narad, BWAAAAAhahahahaha - a much needed laugh as distraction from my flame-eyed medusa rage!

Oh, so now I get it, Eliza! Because seven years elapsed before Mary decided to seek real medical treatment, that's proof that alternative cancer treatment works. Alrighty, then.

MSII, I don't remember reading anything about a serum from Japan on the dark side, unless it's reishi mushroom extract.

Mushroom extract, that makes sense, actually.

If you want to see someone who makes DJT look rational, check out PZ Myers' blog. Some Stan Fan has posted the same angry comment on at least 10 of PZ threads. I can't cut-and-paste or even use his 'nym because the "swear filter" will put me into moderation. Serious Cuckoo.

http://scienceblogs.com/pharyngula/2013/01/06/lets-make-houston-cancer-…

By Marc Stephens … (not verified) on 09 Feb 2013 #permalink

I am so peeved! Not only is DJT is cheating on us with PZ, he's doing less annoying formatting over there. The honeymoon is truly over!

By Melissa G (not verified) on 09 Feb 2013 #permalink

Oh my. MSII, that nutcase on the PZ threads is promoting "Shirley's Wellness Cafe," one of the biggest crap collections around. Shirley Lipschutz-Robinson, the owner, is involved with practically every scammy MLM under the sun, and there's no woo too outlandish for her. I remember seeing her site when I was first diagnosed, and it still makes me shudder. Gads.

Shirley's site was one of the first I encountered when I opened the door to the world of woo. Unfortunately I've since encountered about 100 more just like it.

I was reading old threads about Simoncini and baking soda on beatis's blog just now, and encountered something I had never heard of, and I thought I'd seen it all. Ever hear of oleander for cancer? There's a guy named Tony something-or-other who hosts his own site and contributes to CureZone (another hive of quackery) and he's insisting he's cured "thousands" of terminal patients with this stuff.

By Marc Stephens … (not verified) on 09 Feb 2013 #permalink

MSII-
Yep, Tony Isaacs and his oleander cancer protocol. Ugh.
You might remember a poster by the name of Essa here, from the Entelev/Protocel thread here on RI. She's one of the people I remember taking oleander to self-treat her breast cancer. She compared it to chemo as a poison, and said the side effects she was having from it were from cancer "die off."

Yes, Essa was the one who was nasty to you and accused you of posting under several aliases? How did the oleander work out for her?

Now I'm reading about a scumbag named Matthias Rath, a former associate of Linus Pauling.

How many people like this are there out there?!

http://skepdic.com/rath.html

By Marc Stephens … (not verified) on 09 Feb 2013 #permalink

Has anyone ever compiled a list of ALL the quacks and all the quack cancer "cures" out there? There must be dozens, if not hundreds. It's very depressing, actually.

When I first starting posting here, I used to sign off with the catch phrase "Who believes this crap?" Alas, I was but a young and naive woo-fighter a year ago. I now know that A LOT of people believe this crap.

By Marc Stephens … (not verified) on 09 Feb 2013 #permalink

MSII, it definitely wasn't the first time I've been accused of using different aliases. She was lashing out at me because I had Googled her and found out that she's a snake oil saleswoman. She claims that she'd never trawl for marks on BCO (the breast cancer patient forum), and that she's simply discussing and sharing information about what "works" for her (and coincidentally she happens to also sell.)

There are quite a few lists of quacks and cancer "cures" out there, but I'm not sure how much they really mean to actual patients, especially newly-diagnosed, overwhelmed, and desperate patients. I've started looking for ways to actively make a difference and taking the time to actually submit "official" complaints and reports about quackery.

Are you familiar with the woo-reporting tool FishBarrel?

Not directly familar, but I've heard of it. I'll check it out.

OK, it's 5:15 a.m. in my time zone so I'm going to try to get some sleep. I get so worked up on these boards sometimes it's hard to "come down."

By the way, I looked at the Tony Issac page and have never seen such a collection of every kind of garbage all together on one page. Beside oleander he touts Gerson, Budwig, alkalizing, "earthing," fasting, sunshine, all kinds of supplements and vitamins, "a positive mental attitude," chelation, iodine, hyperbaric O2 chambers, detoxing...it's like a greatest hits of woo.

One of the weirdest things he says is to never eat fruits and vegetables together becuase they interact in the colon and cause putrification. I thought everything we eat putrifies in the gut.

And he ends it by saying "since when was God a quack?" to promote his natural approach.

A demain tout le monde. Bonne sante.

By Marc Stephens … (not verified) on 09 Feb 2013 #permalink

@thenewme and MSII, I've just looked at Shirley's Wellness Cafe. What is the fascination with drinking one's urine? How did that start? She seems to compare it to a vaccination and even "a cure for all diseases". That's a bold statement - "a cure for all diseases". Don't 'cha think?

It boggles the mind how they consider things like Gerson, Budwig, alkalizing, fasting, chelation, iodine, hyperbaric O2 chambers, bioidentical hormone therapy, coffee enemas, auto-urine therapy, megadoses of supplementation, etc., as NATURAL healing!

@S, I believe that the vast majority of the woo sellers don't necessarily *believe* in the efficacy of their products. They just know they're financially profitable. Or those like Mike Adams and Mercola, who know that the more controversial their articles (to hell with the truth), the more traffic/income they'll attract.

Good news from the FTC site: "FTC Permanently Stops Fake News Website Operator that Allegedly Deceived Consumers about Acai Berry Weight-Loss Products
Settlements will Yield more than $1.6 Million and Conclude Sweep against Online Affiliate Marketers and Networks." Maybe they'll want to take a look at Shirley's Cafe!

@thenewme - I agree that the FTC should look at (shut down) Shirley's Cafe. Thanks for the tip about FishBarrel. It looks like a very useful program.

S,

What is the fascination with drinking one’s urine? How did that start?

Some think that this started with observations of reindeer, which in turn led to the discovery that the intoxicating chemicals in fly agaric mushrooms pass more or less unaltered into the urine. So drinking the urine of a person who is intoxicated with fly agaric can sequentially intoxicate several people. The sacred plant Soma written about in the Vedic literature may have been fly agaric which may (or may not) have introduced the idea of drinking urine.

By Krebiozen (not verified) on 10 Feb 2013 #permalink

@K, Shirley has a video on her site showing a chimp urinating into his own mouth. I've never seen an animal do that. Do you know if this normal behavior for a chimp? The video seems to be used as evidence that drinking one's urine is even acceptable to animals as a treatment when they are ill.

@ MSII - Rath used to(?) regularly appear in healthvertisments in the Etobicoke Guardian.

It's a chimp who's hip to the rejuvenating effects of our most precious fluid.

By al kimeea (not verified) on 10 Feb 2013 #permalink

I have to stop looking at their urine drinking videos else I'm going to throw up.

S,

Do you know if this normal behavior for a chimp?

I very much doubt it. Chimps in captivity do all sorts of revolting things, but no one in their right mind would suggest this justifies them in humans.

By Krebiozen (not verified) on 10 Feb 2013 #permalink

@Krebiozen - if one wanted to, there is a video about two women & a cup that could potentially be used to justify all types of things....and please, dear god, do not google that.....

@Lawrence - Ohhh, *&&%!!! I Googled it. Gross!

Fair warning people......can't say I didn't warn you.

One of the weirdest things he says is to never eat fruits and vegetables together becuase they interact in the colon and cause putrification.

Food-combining craziness has a storied history. IIRC, its roots are in the Lebensreform.

Looks like PZ Myers deleted the multiple lunatic rantings that triggered this little sub-discussion.

Maybe PZ got "pissed off" by the comments. ("Oh no, did he really just type that?")

By Marc Stephens … (not verified) on 10 Feb 2013 #permalink

"Family Guy" did a great parody of the two girls video. Brian forced Stewie to watch the clip and recorded his reaction. Of course Stewie, with his gay tendencies, starting asking where he could find a version with two guys. Very funny stuff.

By Marc Stephens … (not verified) on 10 Feb 2013 #permalink

#96

Um... isn't oleander *poisonous*?

I mean, yes, dose makes the poison, I know that, but... aren't these the same people objecting to miniscule doses of thimerosal?

I just sent a complaint about Pediatrica USA to the FDA's general drug information e-mail address. I wasn't able to find a specific address for complaints but I'll keep looking.

I included the details that this company allows unused ANPs to be returned, which is in direct violation of FDA regulations. I included a link to their very own regulation CPG 460.300 that Narad supplied.

I'd be happy to post the letter if anyone else feels motivated to send something similar.

At least I can rest assured that I'm trying to do something.

By Marc Stephens … (not verified) on 10 Feb 2013 #permalink

Khani,

Yes, it's poisonous. This page on how to make the cancer cure includes many warnings to follow the directions exactly. He also tells his readers to read the instructions several times. He says if your lips tingle when you taste it, that means it's still has too much poison and that batch should be thrown away.

Warning: your eyes and/or brain might melt if you read this page. It's long and it includes just about every quack cancer treatment I've ever seen. This one page would give Orac about a month's worth of material.

The oleander soup instructions are about halfway down the page.

DON'T TRY THIS AT HOME!

http://www.tbyil.com/anticancer.htm

By Marc Stephens … (not verified) on 10 Feb 2013 #permalink

@thenewme

Welcome to my home country! Hope you like it here... and sorry for all the wild weather!

Hey, you're in my town: are you interested in meeting up? I'm planning on going to a local skeptics event next week. I can't meet the other RI people, but it's nice to finally have an opportunity to meet at least one...

#118 I never got through all the dire warnings about how "toxins" have built up in my colon.

No, they haven't, thank you. I know I should get more fiber in my diet, but that's ridiculous.

Khani -I don't get it either. They complain about minute amounts of thimerosal, but then self-treat their own cancer(!!) with things like oleander, colloidal silver, iodine, laetrile, etc., all in the name of "natural therapy." Ha.

Flip - Thanks! Please email me at RI.quidama@spamgourmet.com

You’ve just become a cog of Big Pharma suppressing the cure, y’know.

Small steps. I have gotten a correnction iinto the NIS tables. And the Catholic Encyclopedia. Very small steps.

^ I would like to correnct that to "correction."

We never charged patients in clinical trials.

Ah, his lawyers must be kicking him for that. And here he was doing so well, letting his patients be his shield, and he just can't help himself when he gets in front of a camera can he?

It wouldn’t surprise me at all if he packed up his clinic (or part of his clinic) and moved it to, say, Tijuana or Costa Rica or someplace else where patient protections are—shall we say?—not quite as rigorous as they are in most industrialized countries.

Nah, probably one of his Asia set-ups.

Man, this comment really made me think. He must be up to something if even the insurance companies don't want in.

One thought that bothers me is that the FDA seems to be ramping up - any chance his local medical board will too?

@Todd W

That doesn’t consider, however, state laws on the advertisement and sale of unapproved drugs.

That's a good point that nobody seems to have discussed yet. What are the state bodies doing about his antics?

@elburto

How he or his band of deluded supporters and enablers manage to sleep at night is beyond me.

On a giant four poster bed stuffed with 100 dollar bills?

@Neil Johnson

After he threw his own physicians under the bus I’d bet he’ll have a hard time hiring new underlings

Most of his employees seem to be family and long-time friends. I doubt he'll be chucking them over any time soon, especially as they're the ones he's most likely to trust with his plans.

@MSII

Yes, there's HEAPS of woo here. Especially of the natural/TCM kind. You've got to remember we've got a huge population of people who are immigrants from Asia; plus the influence of American media. Oddly enough, we think Scientology is laughable (I'm in Melbourne) and it barely makes a dent. Don't get me started on the various crap that's available in my local pharmacy.

@thenewme

I'm just about to head out, but I'll email you when I get back.

thenewme
Just want to join the chorus saying I have missed you, here and elsewhere. I stay away from the quack threads at BCO now to benefit my sanity.
In some circles the "evidence" for Burzynski lends credence to drinking urine.

...You mean, WordPress, where SBM is hosted?... O.O

By Melissa G (not verified) on 11 Feb 2013 #permalink

I heard the Jones site was shut down law officials had to stop them from what they called or is considered cyber bulling. Apparently certain states have very strict laws on that and one of the people they quoted reported them.

…You mean, WordPress, where SBM is hosted?… O.O

SBM appears to be on Rackspace boxes. It's possible to use the WP software without actually being hosted by WP.

Oh, good, on the SBM. No good for Josephine Jones, alas.

By Melissa G (not verified) on 11 Feb 2013 #permalink

Ronnie, that's a very serious accusation. Do you have a source?

@LW - based on the most recent conversation, I can't see how anyone would consider a discussion between anonymous commentators to be "cyber-bullying."

It's back up.

Your site was flagged by our automated anti-spam controls. We have reviewed your site and have removed the suspension notice.

@Lawrence: yeah, I kind of figured it was just defamation. I wanted to see if Ronnie would try to defend it. But no, just a little hit-and-run.

@narad - I wonder if all the talk about Dr. B flagged the site as spam?

According to Twitter feeds, this guy linked below is the new head PR whore for Burzynski. A former TV reporter. He has no idea what he is in for. He'll be dealing with media relations, crisis management and damage control, according to Bob B. Probably all having to do with the FDA audit.

http://en.wikipedia.org/wiki/Wayne_Dolcefino

Welcome to hell, Wayne.

By Marc Stephens … (not verified) on 11 Feb 2013 #permalink

I wonder if all the talk about Dr. B flagged the site as spam?

It's difficult to know what happened, given the vague nature of the stock response letter. (It's happened to other people.) Their complaint system does not look to be too difficult to abuse.

I bet you the "crisis management" will become obvious as word spreads about Stan's shutdown. I'm sure we'll be hearing from dear old Wayne soon. You guys on the AofA thread, save us some popcorn.

Has this guy Wayne ever covered Stan when he was a TV reporter, I wonder? I'm going to check into his background and see where a connection might lie. He better brush up on the phrase "Govern yourselves accordingly"!

Maybe....just maybe...DJT is Wayne? :) And he's been laying the groundwork for his crisis management?

Wayne left the station in late November and DJT popped up here in December. M-m-m-m-m-m....

By Marc Stephens … (not verified) on 11 Feb 2013 #permalink

Has this guy Wayne ever covered Stan when he was a TV reporter, I wonder? I’m going to check into his background and see where a connection might lie.

They used the same lawyer back in the '90s, at least.

Lawrence,

Are you the same Lawrence as the one posting on the Burzynski thread on Josephine Jones's blog?

We're fighting another ignorant Stan Fan named Sarah on that blog and could use some help, if anyone feels like popping over and "educamating" her. She claims a neighbour's friend was cured by Stan so she's convinced he's the real thing, and doesn't care he's never published anything. She said the issue is dead on JJ's blog because there are only three people commenting, so maybe we can show her just how many people there really are fighting Count Stan.

And she also believes injecting baking soda into tumours make them go away.

By Marc Stephens … (not verified) on 11 Feb 2013 #permalink

Narad,

You mean Stan and this guy Wayne used the same lawyer?

How'd you dig that up?

By Marc Stephens … (not verified) on 11 Feb 2013 #permalink

@MSII - the one and only Lawrence.

Based on this story from a Houston paper, it appears he was fired from his TV gig over his reporting style. He's said to be "hard-hitting" and has set up his own PR company, so he might be under contract to Count Stan, not a direct employee. His "specialty" is taking on politicians.

He says he had offers in other cities but wanted to stay in Houston. I really give a shit about this town," he said. "And I think I have my best shot at success here.

Very classy.

So Count Stan has hired a abrasive, arrogant, foul-mouth hard hitter as his spokeshole. Perfect match.

From another Houston story:

Dolcefino, of course, was not universally popular. He said he received taunts of "serves you right" when he was stricken a few years ago with Bell's palsy, a form of facial paralysis, and has received threats of various types over the years.

"A lot of people in government thought I was a jerk," he said. "But the reality is that the nice way didn't work. They walk over nice people."

He'll fit right in at Stan's shop of horrors.

I wonder how long it takes before he threatens us?

http://houston.culturemap.com/newsdetail/12-19-12-06-23-in-new-role-way…

http://www.houstonchronicle.com/entertainment/article/Wayne-Dolcefino-s…

By Marc Stephens … (not verified) on 11 Feb 2013 #permalink

I have a comment in moderation. I forgot about the swear filter, and this guy Wayne used the word "sh!t" in an interview I quoted. Very classy guy. Way to talk in interviews. Just like Count Stan, who called a reporter a "liitle sh!t" once.

I'm not a pride by any stretch of the imagination, but if a TV reporter, a professional communicator, is so inarticulate as to be unable to find another word to express himself in a print interview, then he's a moron.

Lawrence, that Sarah is one big hunk of stinking ignorance, isn't she? I hope she makes her way over here. We're not as polite as those Brits on JJ's board.

By Marc Stephens … (not verified) on 11 Feb 2013 #permalink

Prude. I'm not a prude. Damn typos.

By Marc Stephens … (not verified) on 11 Feb 2013 #permalink

@Marc Stephens Is Insane - you're not a family of lions either.

By Mephistopheles… (not verified) on 11 Feb 2013 #permalink

You mean Stan and this guy Wayne used the same lawyer?

How’d you dig that up?

Not too tough. I don't know the details of the case; might have been his DWI bust.

We should make sure Wayne Dolcefino finds his name here when he Googles himself, so here you go, Wayne Dolcefino. Hope you enjoy the blood money that Burzynski is paying you, Wayne Dolcefino.

By Marc Stephens … (not verified) on 11 Feb 2013 #permalink

In other legal items, I would note that the Texas calendar for the Wakefield matter still hasn't been updated regarding the BMJ brief that was due on the 4th.

DJT is still dribbling about SEC filings on the "Quote Joe Mercola..." thread. He has no idea what's going on here.

For those newcomers who wonder why I call Burzynski "Count Stan," I'm not being facetious. He bought himself a Polish countship (is that the word?) so he is, technically, a Count. I think there's one too many letters in the word Count in this particular case, however.

By Marc Stephens … (not verified) on 11 Feb 2013 #permalink

It looks like Eric Merola recently added this to the FAQ page of the propaganda website for his infomerical. Oh noes, he's going to identify us!

12. What is the story with all of the anti-Burzynski "bloggers"? As with anything new in the realm of science, you will always have detractors who will not take the time to review relevant scientific information, and instead project strategic cherry-picking of anecdotal data or taking data out of context. In the worst case scenarios, some bloggers intentionally publish fabricated information to their readers in an attempt to curb new patients from going to the Burzynski Clinic. These individuals are also responsible for "gate keeping" the Wikipedia Page on The Burzynski Clinic. This issue, as well as the identities of those involved, will be covered in great length in the new 2013 "Chapter 2" documentary.

Overall, you need to be able to think for yourself. Question everything, including me and this film. Feel free to verify all sources used for this film for yourself via the Sourced Transcript [link]. You will notice the "anti-Burzynski bloggers" refuse to do that or adhere to reputable sources. You might say, "they are preying on desperate cancer patients and families of cancer patients" by carelessly misleading their readers about Burzynski and his invention. This is a natural course of history when scientific innovation like this occurs, and is something that is to be expected. Never underestimate the irrationality of the human brain when it is confronted with something it doesn't understand. These bloggers have an agenda, and are not open to rational discourse.

Our society is built on propaganda wars, and wars of information and disinformation. The fact that most people will basically believe anything they are told without bothering to find out if what they are told is true or not—makes them for easy prey, especially when they are dying of cancer. The writers of the "anti-Burzynski" bloggers know this—and take full advantage of this.

There's also a new FAQ concerning the cost of the ANPs, which Merola claims is free. Patients only pay for labour, not parts, as it were. When did they all start saying the ANPs were free?

13. I am told that Burzynski charges hundreds of thousands of dollars for his Antineoplaston treatment.
Not true. The Burzynski Clinic gives away the medicine itself for free. The medicine costs the Burzynski Clinic $12,000 per month per patient to give it away for free. The Burzynski Clinic does, however, charge for the services that surround the therapy. The initial upfront cost of Antineoplaston treatment is around $20,000 for the first month, and $7,500 per month after the first month. Most insurance companies do not cover these costs, although some have done so if the patient is diligent enough with their insurance company.

Also, the illusion that The Burzynski Clinic "profits" from this therapy is shattered by simply reading The Burzynski Research Institute's Annual 10K Filings for its publicly traded "BZYR" stock: "The Company [Burzynski Reseach Inc] had net losses of approximately $5,031,000 and $4,831,000 for the fiscal years ended February 29, 2011 and 2010, respectively."

SOURCE: http://quote.morningstar.com/stock-filing/Annual-Report/2011/2/28/t.asp…

The full page is here. He also claims Wikipedia is censoring anything positive.

http://www.burzynskimovie.com/index.php?option=com_content&view=article…

<

By Marc Stephens … (not verified) on 11 Feb 2013 #permalink

instead project strategic cherry-picking of anecdotal data

That would be terrible if anyone did that.

By herr doktor bimler (not verified) on 11 Feb 2013 #permalink

The fact that most people will basically believe anything they are told without bothering to find out if what they are told is true or not—makes them for easy prey, especially when they are dying of cancer...

Oh, the irony. Isn't this how Count Stan made his fortune?

By Marc Stephens … (not verified) on 11 Feb 2013 #permalink

Well, you're not a pride either -- you're a few lions short.

*shakes fist at Mephistopheles*

Oh, the irony. Isn’t this how Count Stan made his fortune?

The key word in Merola's addendum to the FAQ is "project".

By herr doktor bimler (not verified) on 11 Feb 2013 #permalink

There’s also a new FAQ concerning the cost of the ANPs, which Merola claims is free. Patients only pay for labour, not parts, as it were. When did they all start saying the ANPs were free?

Again, follow the money.

The Company’s sole source of funding is S.R. Burzynski, M.D., Ph.D. (“Dr. Burzynski”), the Company’s President and Chairman of the Board of Directors. Dr. Burzynski funds the Company’s operations from his medical practice pursuant to certain agreements between Dr. Burzynski and the Company. Funds received by the Company from Dr. Burzynski are reported as additional paid-in capital to the Company.

The finances are deliberately opaque.

Is that how they can claim the clinic "lost" over $10 million in 2010 and 2011? Is their accountant Criss Angel?

By Marc Stephens … (not verified) on 11 Feb 2013 #permalink

I presume that the pharmacy is also an arm's-length entity, although I haven't looked into it.

I should also mention that I have an acquaintance who does this sort of thing for a living. The opinion was that there's something sketchy-sounding about the valuation of those warrants. I have to look harder at this, but my suspicion is that they're being handed out as compensatory scrip, which is not how this usually works. In particular, it becomes something of a tax dodge as compared with stock options.

Stu - your way was better. "You're a few lions short of a pride" sounds like it ought to be a saying.

By Mephistopheles… (not verified) on 11 Feb 2013 #permalink

I presume that the pharmacy is also an arm’s-length entity

I presume it is juuuuust close enough to reach into the till though.

Oooh, Mephistopholes, yes, that does sound good. You'd better copyright that one.

Feel free to verify all sources used for this film for yourself via the Sourced Transcript [link]. You will notice the “anti-Burzynski bloggers” refuse to do that or adhere to reputable sources.

I'm confused...is it saying that we are wrong to adhere to reputable sources, or that our sources are, in fact, not as reputable as theirs?

#146 Marc Stephens Is Insane
.
"I wonder how long it takes before he threatens us?"
.
What's he going to threaten you with? Intelligence?? I've proved THAT doesn't work!!!

By Didymus Judas Thomas (not verified) on 11 Feb 2013 #permalink

#146 Marc Stephens Is Insane
.
"I really give a shit about this town,” he said. “And I think I have my best shot at success here."
.
"Very classy."

"So Count Stan has hired a abrasive, arrogant, foul-mouth hard hitter as his spokeshole. Perfect match."
.
He'd fit right in here!!!
.
#269 Narad
.
February 8, 2013
.
"No, assmunch, ..."

By Didymus Judas Thomas (not verified) on 11 Feb 2013 #permalink

#153 Marc Stephens Is Insane
.
"DJT is still dribbling about SEC filings on the “Quote Joe Mercola…” thread. He has no idea what’s going on here."
.
That's because I knew a lot of y'all would just be spewing your unsubstantiated garbage in garbage out. And you didn't disappoint.

By Didymus Judas Thomas (not verified) on 11 Feb 2013 #permalink

[...] anti-Burzynski “bloggers” [...]
These individuals are also responsible for “gate keeping” the Wikipedia Page on The Burzynski Clinic. This issue, as well as the identities of those involved, will be covered in great length in the new 2013 “Chapter 2″ documentary.
[...] You will notice the “anti-Burzynski bloggers” refuse to do that or adhere to reputable sources.[...]

As one of those "gate keeping" wikipedians I find this quite laughable - not only the threat of "covering" my identity, but also the suggestion that bloggers and wikipedians (there may be an overlap, but I can assure you that I'm not a blogger) refuse to check and adhere to reputable sources.

Here are more photos from Count Stan's Christmas party. Gawd. actor Josh Duhamel was there.

I guess at Stan's parties the booze is free but you have to pay a case management fee to the bartender.

These photos come from Josephine Jones's blog, guest-written by Keir Liddle.

http://www.forum-polonia-houston.com/?p=8735

By Marc Stephens … (not verified) on 11 Feb 2013 #permalink

If Dolcefino has indeed been hired as the new PR guy, it looks like we have some fun times ahead. He seems quite a character and not one to shy away from scandal and controversy.

I was about to say I've just published a new post on this, written by Keir Liddle (21st Floor is still down) but I see MSIS has already mentioned it!

http://josephinejones.wordpress.com/2013/02/12/burzynski-in-dire-need-o…

By Josephine Jones (not verified) on 11 Feb 2013 #permalink

I think Merola's words merit yet another repetition:

The fact that most people will basically believe anything they are told without bothering to find out if what they are told is true or not—makes them for easy prey, especially when they are dying of cancer.

There's the key to Burzynski's success in a nutshell, and it comes straight from his own publicist.
Another thing that struck me was:

Also, the illusion that The Burzynski Clinic “profits” from this therapy is shattered by simply reading The Burzynski Research Institute’s Annual 10K Filings for its publicly traded “BZYR” stock: “The Company [Burzynski Reseach Inc] had net losses of approximately $5,031,000 and $4,831,000 for the fiscal years ended February 29, 2011 and 2010, respectively.

When has anyone suggested that the clinic profits? I think most of us suspect that Burzynski himself profits, and those figures in no way suggest that is an illusion.

By Krebiozen (not verified) on 11 Feb 2013 #permalink

@Narad, you're link doesn't work.

.. Quoting Merola

As with anything new in the realm of science, you will always have detractors who will not take the time to review relevant scientific information, and instead project strategic cherry-picking of anecdotal data or taking data out of context.

Well, we can't cherry pick the peer-reviewed data can we?

Why do I smell an interview with Null or Adams or the like, to prove the mean bloggers who are out to get them actually exist? (You know, because they won't be able to find the actual bloggers to interview)

These individuals are also responsible for “gate keeping” the Wikipedia Page on The Burzynski Clinic. This issue, as well as the identities of those involved, will be covered in great length in the new 2013 “Chapter 2″ documentary.

Oooh... Squidymus is that you?

Feel free to verify all sources used for this film for yourself via the Sourced Transcript [link].

AKA Feel free to verify only things we tell you about.

Holy crap the rest of that is one huge martyrdom-fallacy. On the other hand, it's clear that the criticism is getting to them. Now let's criticise some more and see if they produce peer-reviewed papers!

The Burzynski Clinic gives away the medicine itself for free.[...]

The initial upfront cost of Antineoplaston treatment is around $20,000 for the first month

Er, what now?

#3 Marc Stephens Is Insane
.
"I am also curious as to how this new development will affect the release of the second of Merola’s BS SB commercials due out “any day now.”"
.
This new documentary, tentatively to be released in SPRING of 2013, ...
http://en.wikipedia.org/wiki/Spring_(season)
If you could "fact-check" it might help

By Didymus Judas Thomas (not verified) on 12 Feb 2013 #permalink

#4 Marc Stephens Is Insane
.
"Where did our resident Burzynski supporter get the idea that the FDA has no jurisdiction in the state of Texas? They have an branch office right there in Houston!
I suppose we can expect his same wall-of-text out of touch with reality copypasta to start appearing on this thread any second now."
.
As #13 Todd W. & #40 Agrippina have shown, if there's anyone "out of touch with reality," it's the individual whose last name is "Insane." ;)

By Didymus Judas Thomas (not verified) on 12 Feb 2013 #permalink

#5 Marc Stephens Is Insane
.
"The patient’s blog mentions the clinic shipped three months worth of ANP. Isn’t Stan prohibited from shipping them across state lines? I’m presuming they’re out-of-state…there’s a 1 in 50 chance they are in the same state, after all.
Can’t the Feds nail him for that infraction all by itself?"
.
Probably related to this:
1994 - However, cancer & AIDS patients are legally allowed to take home a 3 months’ supply of medicine for their own use, & frequently do so
Post #158 (2/4/13)
http://scienceblogs.com/insolence/2013/01/21/quoth-joe-mercola-i-love-m…

By Didymus Judas Thomas (not verified) on 12 Feb 2013 #permalink

#6 LW
.
“Of course, there’s a reason why they aren’t."
.
Clearly, the environment for complementary and alternative medicine in Taiwan is not as hostile as in the US
.
It appears that medical doctors in Taiwan can more easily use alternative treatment methods than those in America
.
October, 22 delegates from Taiwan visited NFAM’s offices in Washington, DC to discuss opportunities for collaboration
.
Dr. Chen met with Dr. Ming Liao who developed Cancer Differentiation Agent II (CDA-II) by a novel extraction method that purifies anticancer compounds from human urine
.
Urine has also been shown by Dr. Burzynski (Texas) & Dr. Folkman (Harvard University, e.g. endostatin) to contain several compounds that inhibit cancer cells
.
At present, 72 ingredients have been successfully isolated & identified in CDA-II, & several of these components inhibit cancer in preclinical studies
.
The main thrust of Dr. Liao’s hypothesis is that CDA-II suppresses a methylating enzyme (expressed mainly in the cancer cells) that causes cancer cells to die or differentiate back to normal cells
.
Dr. Liao provided Dr. Chen with information on the recently released outcome of a phase III clinical trial in Mainland China
.
At lower dosage of CDA-II, differentiation is induced with no significant reduction of tumor size; at higher dosage, apoptosis is induced & tumor reduction begins, with little adverse reactions
.
Dr. Chen also spoke with Dr. Ho, who is a medical doctor using CDA- II
.
Dr. Ho reported beneficial effects of CDA-II for some of his patients
.
Dr. Kamataro Sano of Kofu, Japan also reports an 80% response for cancer patients treated with CDA-II plus high doses of vitamin C & other nutrients
.
NFAM is planning to evaluate medical records from patients who have been successfully treated with CDA-II and assess opportunities for clinical research
http://fight4yourhealth.com/answers/taiwan-cancer-therapy
4/2006 - CDA-II - Taiwan, ROC - Inhibitory effect of CDA-II, a urinary preparation, on aflatoxin B(1)-induced oxidative stress and DNA damage in primary cultured rat hepatocytes
Authors: ... LIAU MC, ..
www.ncbi.nlm.nih.gov/m/pubmed/16229933
6/2012 - CDA-II - China - DNA methyltransferase inhibitor CDA-II inhibits myogenic differentiation
www.ncbi.nlm.nih.gov/m/pubmed/22627135
12/2007 - CDA-2 - China - [Growth inhibition and differentiation of imatinib-resistant chronic myeloid leukemia cell induced by cell differentiation agent in vitro]
www.ncbi.nlm.nih.gov/m/pubmed/18476538

By Didymus Judas Thomas (not verified) on 12 Feb 2013 #permalink

#9 LW
.
“doctors should be able to start prescribing the ANP and doing clinical trials of their own.”
Could other doctors have done clinical trials of their own? I mean, other than Burzynski squatting on his patent like a dragon on his hoard? I’ve wondered about this with all the drivel from the pro-Burzynski troll.
Before the consent agreement, it seems to me, any doctor who wanted to could have purchased antineoplastons from Burzynski and run a proper clinical trial, and even afterwards they could have gotten related chemicals if I’ve understood Orac’s explanations correctly."
.
Thank you for ignoring post #204 (2/6/13)
http://scienceblogs.com/insolence/2013/01/21/quoth-joe-mercola-i-love-m…

By Didymus Judas Thomas (not verified) on 12 Feb 2013 #permalink

#10 Todd W.
.
"There are ways he can get around that. For example, part of Burzynski’s schtick is that the patient’s local physician supervise their care and treatment. That might make them a study investigator. He could then ship the drugs to the physician as part of the “study”, avoiding unapproved interstate sales regulations. If he’s shipping antineoplastons directly to the patients, that could be a violation, since it would constitute interstate sales of an unapproved drug."
.
Unless he's NOT charging them for it
See post #18

By Didymus Judas Thomas (not verified) on 12 Feb 2013 #permalink

#11 Krebiozen
.
"He appears to have misunderstood part of this article by Ralph Moss which states:
This current FDA official read from a former FDA agent’s letter to a Congressman stating that “Dr. Burzynski may manufacture and sell antineoplastons in Texas, where the FDA lacks jurisdiction.”
Correct me if I’m mistaken, but I understand this to mean that he may manufacture and sell antineoplastons in circumstances in which the FDA does not have jurisdiction, not that they have no jurisdiction in Texas at all."
.
As #13 Todd W. & #40 Agrippina have shown, if there's anyone who "misunderstood," it's the individual who ignored when this issue was discussed on:
http://scienceblogs.com/insolence/2012/11/26/significance-of-the-tmb-di…

By Didymus Judas Thomas (not verified) on 12 Feb 2013 #permalink

#12 Marc Stephens Is Insane
.
"How could anyone in their right mind* think the FDA would not have jurisdiction in Texas? Texas hasn’t succeeded from the USA quite yet. And the FDA has an office right there in Houston, ..."
.
"*There’s my answer right there."
.
You'd probably think that if the Coast Guard had an office in the Chihuahuan or Great Basin desert ...
.
Oh yeah ... "Insane."

By Didymus Judas Thomas (not verified) on 12 Feb 2013 #permalink

#17 elburto
.
"He’s made millions in profit ..."
.
Anyone can come on here & elBlurto that out. Now back it up with a reference after reading post #163

By Didymus Judas Thomas (not verified) on 12 Feb 2013 #permalink

#22 Adam
.
It won’t occur to them at any point that if his treatment were actually proven to work over the last 20 years he would have long been out of clinical trials by now and coining it so fast that *he* would be big pharma by now.
.
Or they could be like you & ignore post #158 (2/4/13)
http://scienceblogs.com/insolence/2013/01/21/quoth-joe-mercola-i-love-m…
7/17/1985 – ... seizing over 200,000 documents (research papers, patient records) & confiscating 11 file cabinets, including all patient medical records
.
(It took nearly 14 years to recover those records)
.
So some of y'all don't have to remove your socks, that would be about 1999
.
1986 – ... FDA refuses to release the seized documents, which have not been returned
.
they come back, seize another 100,000 documents
.
1990 – Again, thousands of documents are subpoenaed ...
.
3/24/1995 – ... confiscates boxes of records, including patient medical records
.
... then attempted to seize the medical records of 17 patients
.
6/21/1995 – ... confiscated all of the (800) films, without letting him make any copies!

By Didymus Judas Thomas (not verified) on 12 Feb 2013 #permalink

#27 Andreas Johansson
.
"I presume there is no chance at all of Burzynski facing any legal consequences from a child apparently having died from malpractice at his clinic?"
.
It's great that you are now Judge, Jury, & Executioner.
.
You have already determined that "malpractice" has occurred without knowing ALL the "facts."
.
CONGRATULATIONS!!! You're no Rick Jaffe

By Didymus Judas Thomas (not verified) on 12 Feb 2013 #permalink

#29 lsm
.
"Since Stan is so adept at slithering through loopholes, what theoretically could the FDA get him with?"
.
Exactly what "loopholIsm" did SRB "allegedly" slither through?

By Didymus Judas Thomas (not verified) on 12 Feb 2013 #permalink

#33 Marc Stephens Is Insane
.
"Local CT scan.My Onco claims cancer growing while on #Burzynski treatment. Dr B claims significant reduction on same CT. Who is correct?"
.
Posts "Insane" person who believes all tweets

By Didymus Judas Thomas (not verified) on 12 Feb 2013 #permalink

#62 Marc Stephens Is Insane
.
"But what doctor can write a prescription in Europe or Asia for ANPs?"
.
Maybe in China or Taiwan, ROC?
.
1999 - CDA-II - China
Liao MC
A clever anticancer drug CDA-H (CDA-II / CDA-2)
Taipei: ShiMao publisher
1999; 149–161
www.google.com/patents/EP1419779A1?cl=en

By Didymus Judas Thomas (not verified) on 12 Feb 2013 #permalink

#94 Melissa G
.
"I am so peeved! Not only is DJT is cheating on us with PZ, he’s doing less annoying formatting over there. The honeymoon is truly over!"
.
If a lot of you on this blogsplat actually knew what you're blathering about, you "might" become somewhat believable. :)

By Didymus Judas Thomas (not verified) on 12 Feb 2013 #permalink

#109 Krebiozen
.
"Chimps in captivity do all sorts of revolting things, but no one in their right mind would suggest this justifies them in humans."
.
Yeah, like slinging their own poo, which reminds me a lot of a few of you
.
I mean ... you DO believe you evolved from apes, right??? :)

By Didymus Judas Thomas (not verified) on 12 Feb 2013 #permalink

#117 Marc Stephens Is Insane
.
"I just sent a complaint about Pediatrica USA to the FDA’s general drug information e-mail address. I wasn’t able to find a specific address for complaints but I’ll keep looking.
I included the details that this company allows unused "
.
Do you really expect them to pay any attention to YOU after THIS???
.
1996 - In violation of its own rules, which requires FDA to “attempt to discuss & satisfactorily resolve the matter with the sponsor before issuing a clinical hold order”), FDA orders Dr. B. to stop accepting new patients
.
FDA agrees that SRB has responded to all its comments in the inspection report, but insists that the hold is necessary until a re-inspection can be performed
.
In so doing, FDA seems to violate its own rules: Code of Federal Regulations 21 CFR 312.42 subsection (c) states that FDA will attempt to
.
“discuss & satisfactorily resolve” the matter with the sponsor before issuing the clinical hold order
.
In a separate action, Anthony DeCicco of the FDA’s Division of Antiviral Drugs telephones Dr. B. to tell him that he must stop treating his HIV patients
.
Dr. B. reminds him in writing that this action directly violates promises by high FDA officials, including Commissioner Kessler, that FDA would not interrupt the treatment of any patient who began before 2/23/1996
.
Post #180 (2/4/13)
http://scienceblogs.com/insolence/2013/01/21/quoth-joe-mercola-i-love-m…

By Didymus Judas Thomas (not verified) on 12 Feb 2013 #permalink

#125 flip
.
"We never charged patients in clinical trials.
Ah, his lawyers must be kicking him for that. And here he was doing so well, letting his patients be his shield, and he just can’t help himself when he gets in front of a camera can he?"
.
3/24/1995 – Ironically, in light of what was about to happen, SRB mentioned several times that he would treat free of charge patients who enrolled in his FDA-approved trials
.
3/12/1996 – FDA responds to SRB’s request for permission to charge clinical trial patients to at least recover the cost of manufacturing antineoplastons
.
Such permission is necessary because SRB receives no outside funding
.
Janet Woodcock, MD, of FDA says that before they will consider such a request, SRB must submit detailed records of every payment ever made by his patients—more than 2,500 over the past 18 years
.
Post #184 (2/4/13)
http://scienceblogs.com/insolence/2013/01/21/quoth-joe-mercola-i-love-m…

By Didymus Judas Thomas (not verified) on 12 Feb 2013 #permalink

I've only just seen this, from Ronnie:

"I heard the Jones site was shut down law officials had to stop them from what they called or is considered cyber bulling. Apparently certain states have very strict laws on that and one of the people they quoted reported them."

Very serious and completely unfounded accusations. In fact, my blog was erroneously flagged by automated anti-spam controls and was only down for a few hours.

By Josephine Jones (not verified) on 12 Feb 2013 #permalink

BTW, a certain commenter has been flooding the threads over the last 12 hours. His most recent comments are all in the moderation queue, but with more than 40 over the last 12 hours I probably won't be releasing the vast majority of them, given how repetitive and inane they are. That would be a lot of annoying and obnoxious idiocy to release in such a short period of time, and if you look further upstream in this comment thread you'll see that there's already plenty of that from him there. Enough's enough. I'm more tolerant of trolls and just plain obnoxious commenters than almost any blogger you'll come across, but this is getting ridiculous.

Thank goodness! I generally stop reading the threads with a heavy DJT infestation, not because he's ignorant, puerile, insulting and clueless (though he's all of those), but because his posts are so boring.

Thank you Orac. I normally don't like bans or not publishing comments, but I am thoroughly sick of trying to trawl past his stuff. DT35 is right, it's just plain boring.

Now, let's just wait and see djt make accusations of persecution and unfairness. Should be entertaining to see his attempts at this.

Oh, BTW, djt, if you are still reading this, I was one of the Wikipedia editors who reported you for your trolling behaviors there.

Have fun with that.

@flip

@Narad, you’re link doesn’t work.

Sorry about that. Let's try again.

DJT was like a drunk in a bar. Yes, they're amusing for a while, but then quickly become annoying and obnoxious. Eventually the bartender has wither throw the drunk out or risk losing his regular customers. I am glad Orac has decided to throw the drunk out.

Nothing will annoy him more than not being able to post his juvenile retorts that ceased containing any substance weeks ago.

I still question his motive. Since mid-December he has posted hundreds of comments, expending the energy the write thousands upon thousands of words. He has inside information about Merola and uses the same arguments and terminology as Merola, but as much as I hate to admit it, I think Merola is much smarter than DJT and lacks a certain sense of whimsy that DJT has displayed. He was actually trying to be funny at times, a quality I have never seen Merola display.

Whomever or whatever, I'm glad he's gone. It wasn't fun around here anymore.

I just hope a) he doesn't find another way to post, and b) Orac doesn't change his mind.

DJT must be seething right now.

By Marc Stephens … (not verified) on 13 Feb 2013 #permalink

An interview with Wayne Dolcefino here:
http://www.skeptical.gb.net/blog/?p=154

He admits the FDA is at Burzynski's clinic right now but says that's "par for the course" when trials are being completed.

So the FDA goes to every lab and every research facility in the USA when any Phase II trials are being completed?
I call BS.

By Marc Stephens … (not verified) on 13 Feb 2013 #permalink

Now, let’s just wait and see djt make accusations of persecution and unfairness. Should be entertaining to see his attempts at this.

Probably try moving back to Pharyngula, be ignored or canned, and then start sending incoherent E-mails to David Braun.

I'm pretty sure PZ banned him too, after his last round of wall-of-text.

I'm learning that amongst all the science bloggers, Orac is the most tolerant and least likely to ban anyone. DJT wouldn't have lasted a week on other blogs.

By Marc Stephens … (not verified) on 13 Feb 2013 #permalink

I am happy that Didymus Judas Thomas has apparently received the reward he truly desired and worked so hard for, and wish him well in his future endeavors.

By Mephistopheles… (not verified) on 13 Feb 2013 #permalink

Please replace "he" above with "he/she/it" and "him" with "him/her/it" as appropriate. I did not mean to wrongly guess Didymus Judas Thomas's gender.

By Mephistopheles… (not verified) on 13 Feb 2013 #permalink

Please replace “he” above with “he/she/it” and “him” with “him/her/it” as appropriate.

Are you sure you don't also want to change "well" to "similar success"?

DON’T TRY THIS AT HOME!
http://www.tbyil.com/anticancer.htm

Do not try anything that appears on this site.

They recommend daily doses of 100 mg of iodine FFS (RDA is around 100 - 150 mcg).

If your thyroid was ok before you try that, it won't be afterwards.

Kemist,
Iodine / iodoral is one of the most hyped "miracle cures" peddled on BCO, and yeah - even up to 100 mg doses. There's a group called breastcancerchoices (dot) org that heavily promotes iodine supplementation and recommends a scammy iodine "loading test," that they even sometimes offer for FREE to breast cancer patients! Wow, what a bargain (NOT). It's sick how they peddle this crap directly to cancer patients under the guise of being breast cancer patients themselves.

At one point I started looking at some of the Woo Woo Websites about magical iodine. Sounds like it became part of the magical-thinking pharmacopoeia during the days of Cayce and has been firmly ensconced there ever since. This was after Dangerous Bacon mentioned the topic:
http://scienceblogs.com/insolence/2012/12/20/antivaccine-quackery-you-b…

Soon, however, one encounters Detoxified Iodine (which has had electricity passed through it in just the right way), and Detoxadine, and bio-elemental nanocolloidal states. There is an entire rabbit warren of weirdness there and I was lucky to escape with my sanity intact PEACOCK WIBBLE HATSTAND. Cayce's various intellectual heirs failed to agree on the proper electrical processing for iodine that will maximise its bio-elemental powers, so there are a number of alternative products on the market CALENTURE PEACOCK.

It is not difficult to find naturopaths promoting iodine megadose treatment, while recommending homeopathy in the next sentence.

By herr doktor bimler (not verified) on 14 Feb 2013 #permalink

h.d.bimler,

You wrote: “PEACOCK WIBBLE HATSTAND”

Funnily, tonight's episode of Grand Designs included a peacock. Surely there was a hatstand in there somewhere too.

thenewme,

I had read a bit of iodine woo back when I was first diagnosed with hypothyroidism. It was mostly for my own amusement, and to try to understand why some people advised me to take iodine supplements when I knew my thyroid had basically been destroyed by my supposedly magical rainbow-throwing immune system (if you believe what the woo woos say about it).

How I could have become iodine-deficient in a first-world nation was never explained, and neither was how a shot thyroid supposed to start making T4 with surplus iodine, especially as it would stop receiving TSH signal with the feedback. Then I was entertained by people who believed in taking costly, hapharzardly dosed dessicated pig thyroid, or weird T3-T4 mixes, rather than low-cost, standardized synthroid.

However, I had never heard of it as breast cancer treatment.

Here's a longer e-mail response from Wayne Dolcefino to that UK blogger about Burzynski. He stil lclaims it's normal for the FDA to be on site to monitor trials. He defends the costs of the treatment (hospitals are expensive, yadda yadda) and denounces bloggers who attack patients. He says it's unfair to attack "joy" when Count Stan is curing children, etc.

No word on the Phase II trial status. The blogger has asked specific questions about not publishing, the high monthly cost of ANPs, etc. but so far no response to those questions yet.

http://www.skeptical.gb.net/blog/?p=161

By Marc Stephens … (not verified) on 14 Feb 2013 #permalink

kemist,

Then I was entertained by people who believed in taking costly, hapharzardly dosed dessicated pig thyroid, or weird T3-T4 mixes, rather than low-cost, standardized synthroid.

IIRC there is an occasional commenter here I have argued with about the alleged advantages of dessicated thyroid over synthetic T4.

I have seen Lugol's iodine (a mixture of elemental iodine and potassium iodide) recommended on CAM sites to prevent (but not treat) breast cancer and bitter complaints that it is now hard to get hold of in the US thanks to Big Pharma suppression (in reality because it is used in manufacturing methamphetamine). The usual test recommended is to stain some skin with iodine and see who quickly it disappears, the idea being that if you are iodine deficient it will be absorbed by the body more quickly. I don't believe there is any scientific basis for this at all.

By Krebiozen (not verified) on 14 Feb 2013 #permalink

If I may put on my editorial hat, I kind of wish Mr. James would lose the accent over the 'n'. I'm well familiar with the inclination to hypercorrect, but Burzynski himself has dropped it, as do many immigrants. (Every time I encounter a Turkish name in a reference list, I have to go dig up the CV to see how they actually hold themselves out.)

Mikey Adams was whining last week that a company that makes water purification tablets (NOT MMS!) was forced out of business because the ebil gub'mit took away their iodine. It was a key component of their product but they can't buy it anymore in bulk because of its use in meth production.

Then where do the cancer quacks get it?

By Marc Stephens … (not verified) on 14 Feb 2013 #permalink

When I made beer, I used drugstore iodine to perform a starch-conversion test. Every single brewing book warns that the test batch as well as the plate and any utensils or tools that have come in contact with the iodine are poisonous and should be thrown away, or sanitized in the case of the tools. And that was only using one drop of idoine--literally. One drop. So how is it that such large quantites are being ingested "safely"?

I realize there are different potencies, concentrations, combinations, etc. but it still seems like a foolish thing to do.

By Marc Stephens … (not verified) on 14 Feb 2013 #permalink

In other news, Pediatrica USA's Web site has gone bye-bye.

@Narad - hmmmm, that didn't take very long.

Perhaps the thread of the Burzynski empire is starting to unravel?

I did send a letter to the FDA last week, including all the supporting links (thanks to Narad). But there's no way the FDA would act that quickly, would they? I never even got a response from the FDA, not even an auto-repsonse.

More likely is that Pediatrica was informed that they're in the spotlight and elected to take down the website as a preemptive move. I'm sure they're still in business, it's just more clandestine.

Or...maybe the FDA at Count Stan's uncovered some evidence that he's working with them. Since ANPs are now suspended, they warned Pediatrica.

By Marc Stephens … (not verified) on 14 Feb 2013 #permalink

In other news, Pediatrica USA’s Web site has gone bye-bye.

Oooo how interesting; nice work boys.

By Science Mom (not verified) on 14 Feb 2013 #permalink

I did send a letter to the FDA last week, including all the supporting links (thanks to Narad). But there’s no way the FDA would act that quickly, would they? I never even got a response from the FDA, not even an auto-repsonse.

I received a copy of my complaint to the California Board of Pharmacy and a reference number, but there's nothing on their enforcement page and I've received no further communication. If Burzynski was in fact supplying ANPs to an unlicensed pharmacy, this could prove to be very entertaining indeed.

Pediatrica USA: This site is under construction.
Best to grab copies from the Google cache.

By herr doktor bimler (not verified) on 14 Feb 2013 #permalink

Best to grab copies from the Google cache.

I think I've got the whole thing. Probably should've sucked it all down with curl when I had the chance, but that would be... telling. On the other hand, antineoplastons.us, which was the same guy, is gone without a trace.

Anyone else seeing a seriously screwed up header on this page?

By Krebiozen (not verified) on 14 Feb 2013 #permalink

Never mind, it's resolved itself.

By Krebiozen (not verified) on 14 Feb 2013 #permalink

DJT has turned up on Josephine Jones's blog. Same wall of links, but he's also bitching about his treatment here.

By Marc Stephens … (not verified) on 14 Feb 2013 #permalink

Oh look. He’s set up his own blog too

I wonder whether he'll moderate it.

Might I suggest we all ignore the temptation to reply to him either on JJ's blog or his own blog.

By Marc Stephens … (not verified) on 14 Feb 2013 #permalink

Narad,

What time zone are you in? I thought I was the only one who kept "rock star"* hours. It's 4:10 a.m. where I type this.

*Not an ego thing: I'm up all night and sleep 'til noon.

By Marc Stephens … (not verified) on 14 Feb 2013 #permalink

What time zone are you in? I thought I was the only one who kept “rock star”* hours. It’s 4:10 a.m. where I type this.What time zone are you in? I thought I was the only one who kept “rock star”* hours. It’s 4:10 a.m. where I type this.

I'm a time zone to the west of you. It's been an odd day, and I used to work the night shift, and I had to give up on figuring out how one gets a double-summation Bessel expansion of a single cosine term, and... well, these things happen sometimes. I attempted to post at JJ's site, but there's enough weirdness around WordPress-based logins that I simply gave up when it failed.

E-w-w-w-w. That was so creepy (the baby face, not the jingle.) Reminded me of Family Guy's "Prom Night Dumpster Baby." I take it that was an actual old-tyme commercial? Back in the days when commercials could run two minutes, I guess.

By Marc Stephens … (not verified) on 14 Feb 2013 #permalink

I take it that was an actual old-tyme commercial?

No, that was an old-time mockery of health faddism. That's Groucho Marx doing the "sleep all night" line, and the inimitable Jimmy Durante is in the mix, as well as Danny Kaye and Jayne Wyman.

Went right over my head. I'll watch and listen to it again.

By Marc Stephens … (not verified) on 14 Feb 2013 #permalink

Hey, remember when DJT first showed up here and claimed that he was just here to defend truth and reason, not specifically to defend Stanley? Okay, hands up, who's surprised that he was lying from the very beginning? ... yeah, me neither. ^_^

By Antaeus Feldspar (not verified) on 15 Feb 2013 #permalink

Antaeus Feldspar, he does have a good word, though: Oracolytes. As Oracolytes, do we get paid? Or do we at least get swag?

Yet more proof that DJT isn't half as dumb as he pretends. And isn't half as naive either. One still wonders why, if he is so capable of setting up a blog, he can't just write normally... and the answer is either blowing in the wind, or soon to be revealed I'm sure.

I have unapproved DJT's comments on my blog as he appears to be a spammer.

I also note that the blog contains multiple variants of Burzynski's name and is also apparently set up with the sole purpose of smearing Orac. I think it probably violates the Wordpress.com TOS.

Here is where it can be reported as Spam:

http://en.wordpress.com/report-spam/

I think my own blog was suspended because Errol Denton reported me in this way and was encouraging others to do the same.

By Josephine Jones (not verified) on 15 Feb 2013 #permalink

Keir Liddle has devoted an entire posting to DJT's new blog. I wonder if Keir is aware of DJT's track record posting hundreds upon hundreds of nonsense comments and his idiotic juvenile rantings:

http://www.thetwentyfirstfloor.com/?p=7610

By Marc Stephens … (not verified) on 15 Feb 2013 #permalink

Not sure I would classify Squidymus as a spammer. (Squid yes... ) More like a troll with an uncontrollable urge to regurgitate google results ... ok, yeah, maybe that's spam.

Oh, Josephine: Squidymus had been here long before the 40 posts thing. I suspect he just ramped it up because he couldn't post on Wikipedia anymore. I recommend you look at all the other Burzyinski threads here to see his... droppings.

flip,

If his intention is to drum up support or business for Count Stan, they yes indeed, that's spam.

I wonder if Orac has seen Keir's posting titled "In Defence of Orac" yet?

I was in touch with JJ privately once DJT popped up there, to fill her in on his background. She promptly decided to delete the two posts he managed to get through and ban any futher dribbling. I'm sure she would have been inundated with dozens, nay hundreds of similar wall-of-links.

What's left for him? The 21st Floor? He'll be systematically banned by every science blogger out there. Good thing he started his own blog, which will be ignored.

And who the hell is Arthur Burzynski?

By Marc Stephens … (not verified) on 15 Feb 2013 #permalink

@flip

What do you have against poor Josephine that you would suggest she read more DJT? Have you no mercy?

On the other hand, antineoplastons.us, which was the same guy, is gone without a trace.

I must apologize for committing the same error twice. It was antineoplaston.us (not "antineoplastons.us"). Identical to the Pediatrica site.

I find it hilariously apt that DJT on his blog says that RI is hosted at "scienceblog.com"

@AdamG

Well, that just tells you the level of reading comprehension he/she/it has.

Honestly, I'm a bit torn by this. On one hand, he has a forum in which he can post his/her/its ignornance. On the other hand, it's a good idea that all of his ignorance will be in one spot only, instead of all over the internet.

@Novalox - I think it will be equivalent to "the sound of one hand clapping."

I think it will be equivalent to “the sound of one hand clapping.”

This I doubt. The koan represents the penultimate step in the Zen wheel. The crowing of a wooden chicken, once heard, is the call to finish the work.

Wow-- out of all of DJT's mutated and horribly wide-of-the-mark attempts at humor, one FINALLY landed-- "Oracolytes!" That is a GREAT word, and I love it like I love the Pharma Tarts!!!

By Melissa G (not verified) on 15 Feb 2013 #permalink

@MSII

If his intention is to drum up support or business for Count Stan, they yes indeed, that’s spam.

True, I wasn't really thinking of it in that way.

But again, looking at the 21st Floor post by Squidymus, it's clear that the whole language barrier thing is a put on. Either that or someone's using the same 'nym. And apparently the 21st Floor one is Aussie - ours was always US.

This is why I suspect trolling more than spam.

@Shay

What do you have against poor Josephine that you would suggest she read more DJT? Have you no mercy?

LOL! Alright, I take it back: JJ shouldn't read anything lest her mind melt from the incoherence of it all.

Either that or someone’s using the same ‘nym

DJT has no copyright to the name "Didymus".
Ideally a skeptical epidemiologist would call himself Epididymus.

By herr doktor bimler (not verified) on 15 Feb 2013 #permalink

Looks very much like a different Didymus going on the style of writing, the usderstanding of Australian regulatory processes and the lack of links.

Looks very much like a different Didymus going on the style of writing, the usderstanding of Australian regulatory processes and the lack of links.

Not to mention being, I don't know, understandable...

By Mephistopheles… (not verified) on 15 Feb 2013 #permalink

So he’s selling ANPs out of a shopping mall from a Laser Tag outlet? Nice. [...]
This guy has to be a business partner of BS SB somewhere down the line…

is there any evidence that the Pediatrica / Dart-ops / on-line memorials guy is actually working with Burzynski? I mean, for every Burzynski in the Wooniverse, building up a market for his new brand of snake-oil over a period of decades, there is a whole second tier of parasites and bottom-feeders who see the money flow and wonder how they can grab some. It's not as if the concept of intellectual property is widely respected in the Wooniverse.

He could have non-Burzynski sources in mind for the antineoplastons he was proposing to export to the non-US market... or just a warehouse of white powder (it's not as if he would be robbing his customers of therapeutic benefits).

As well as running the Laser Tag clone, Erwin Ilao claims on his vanity memorial website company to have

worked for the largest trans-national pharmaceutical company in Asia, known in the Philippines as United Laboratories, Inc. He started out as a professional service representative and then moved on to product management. In his successful stint as a product manager he managed the anti-infective category of the company and launched a third-generation cephalosporin known as Cefixime. Considered in the company to be one of the most promising managers of their time, Erwin Ilao, was tapped to handle the company’s nutritional category whose products range from women’s nutritional drink to adult energy drink. There he was exposed to ageist dilemmas and values and has delved in deeper into business and marketing management.

By herr doktor bimler (not verified) on 15 Feb 2013 #permalink

is there any evidence that the Pediatrica / Dart-ops / on-line memorials guy is actually working with Burzynski?

From the "online ordering" section,

All products shall come from the Burzynski Research Institute in Houston, Texas, USA. Applicable shipping charges will be added to the order.

Of course, I suppose Wayne Dolcefino could sort this right out for everyone, with evidence.

I read Majikthyse's statement that Ilao and Burzynski are formally associated, but this could be an assumption, fostered by the former.
Burzynski is skilled at plausible deniability and it is hard to imagine him leaving a written record of any arrangement with Ilao, given the latter's naked opportunism. Sorry -- his entrepreneurial zeal.

I did like Ilao's offer (at both the Pediatrica and Antienoplaston websites) of a money-back offer to take back unused product when the patient dies.

By herr doktor bimler (not verified) on 15 Feb 2013 #permalink

From the “online ordering” section,
That ascribes a certain amount of honesty to Erwin Ilao.

By herr doktor bimler (not verified) on 15 Feb 2013 #permalink

HDB,

Count Stan's name was all over that website, including links back to the Burzynski Clinic's own website.

By Marc Stephens … (not verified) on 15 Feb 2013 #permalink

That ascribes a certain amount of honesty to Erwin Ilao.

It does indeed. The question is what happened to Ilao's operation. Was BRI alerted to it? Then Dolcefino should be able to provide every bit of evidence leading to the takedown. Was law enforcement involved? Then one will be able to ascertain what he was purporting to be shipping, and its provenance, as foam-dart guy sure as hell wasn't synthesizing anything himself. It's "murky, to be certain." But the ball is in BRI's court, and if there's a reply, it had better be thorough.

including links back to the Burzynski Clinic’s own website

Oh yes. But a poorly-thought-out parasitical scam might include the same links, with the intention of piggybacking on Burzynski's air of credibility. I shall withhold judgement until someone finds a communication from one of B's sales reps to a customer recommending one of Ilao's erstwhile websites as a supplier.

Burzynski has grandiose plans for a worldwide chain of Burzynski Clinics. Would he really settle for distributing his flagship pills through a dodgy operation run out of a laser-strike company?

By herr doktor bimler (not verified) on 15 Feb 2013 #permalink

he largest trans-national pharmaceutical company in Asia, known in the Philippines as United Laboratories, Inc

The Whackyweedia page on United Laboratories is entertaining, illustrated as it is with a photograph of "Sister Ma. Raquel A. Reodica, RVM, famous cancer healer of the Lord".

By herr doktor bimler (not verified) on 15 Feb 2013 #permalink

run out of a laser-strike company?

I think it's time to nip this one. Dart Ops, the site for which is still up, is not a laser-tag operation, it's foam projectiles.

Upon further reflection, I think the very least that BRI is going to have to provide in order to maintain deniability is a bona fide C&D and a verifiable complaint to the relevant California law enforcement agencies. In particular, anything short of the latter, with a full paper trail, will lead me to believe they were in on it.

I think it’s time to nip this one. Dart Ops, the site for which is still up, is not a laser-tag operation, it’s foam projectiles.

I used Laser Tag as a convenient generic term. I didn't think "foam projectile gaming facility" rolled off the tongue.

Notice one of the games on offer is an "Assassinate The President" simulation. Very tasteful. Isn't it illegal in the U.S. to even use those words?

By Marc Stephens … (not verified) on 15 Feb 2013 #permalink

#233 I love how he can't spell the word "hypocritical," and didn't bother looking it up before he put it in the title.

Khani,

I believe that was his whimsical way of combining the word "hypocrite" with "Hippocratic." But either way, he left out the second "p". (Pee? Did someone mention ANPs?)

By Marc Stephens … (not verified) on 15 Feb 2013 #permalink

@HDB

DJT has no copyright to the name “Didymus”.

I agree. I'm just pointing out the differences between the one here and the one there.

Eric Merola has popped up in the comments of this latest post about Burzynski. He compares us skeptics to members of the Wetboro Baptist Church. What a miserable piece of human filth:

http://www.skeptical.gb.net/blog/?p=177

Any thoughts about the chakras?

Now I have to boycott anything Josh Duhamel appears in, just like Jenny M, Suzanne Somers, Tom Cruise, Travolta, and Jenna Elfman, among others.

By Marc Stephens … (not verified) on 16 Feb 2013 #permalink

Darn...make that Westboro.

By Marc Stephens … (not verified) on 16 Feb 2013 #permalink

Notice one of the games on offer is an “Assassinate The President” simulation. Very tasteful.

The only thing I'm seeing is "Protect the President."

Isn’t it illegal in the U.S. to even use those words?

No, but it's very, very unwise.

Notice one of the games on offer is an “Assassinate The President” simulation. Very tasteful. Isn’t it illegal in the U.S. to even use those words?

No, but you'll make a lot of new friends very quickly. Large men in dark suits with no sense of humor.

Well I've been weeping for days after Diddums struck the lowest possible blow by calling me 'ElBlurto'. I'm devastated.

I was enthralled by his claims that Burykidski is virtually a pauper, and loses money from his "trials". Given that certain British families are on the record as having forked over hundreds of thousands of pounds to him, that the Lola Quinlan cased showed he was selling a drug that costs pennies (at real pharmacies) for thousands of dollars (from his Little Shop of Horrors, and the very easily verifiable fact that his home address is a house worth millions - is Diddums simply blind to factual evidence?

MSII - He's fascinated with you isn't he? Poor Diddums. His apparent ignorance of who MS is (despite his encyclopaedic knowledge off all things Burzynski) is odd. Could he be Marc Stephens, still smarting over his brush with the Streisand Effect?

Here's another, much longer e-mail response from Wayne Dolcefino. He is now confirming that he represents Count Stan and "answers" several of the questions posed to him.

http://www.skeptical.gb.net/blog/?p=192

By Marc Stephens … (not verified) on 17 Feb 2013 #permalink

And here are details from Eric Merola about the second part of his commercial, coming March 5!

http://www.thetwentyfirstfloor.com/?p=7638

(As an aside, I wish Keir would learn when to use, and when NOT to use, apostophes. Oh well, I'm fighting an uphill battle with misuse of English these days...)

By Marc Stephens … (not verified) on 17 Feb 2013 #permalink

I find it hilarious that Wayne thinks we should use our "influence" with medical journals to hasten the publication of Count Stan's papers.

By Marc Stephens … (not verified) on 17 Feb 2013 #permalink

It hasn't occurred to Wayne, evidently, that first, Stan has to actually write something.

Oh, but they're on their way! Phase II has wrapped up, don'tcha know.

So now Wayne tells us that "most" clients at Count Stan's are NOT in any kind of clinical trial, they're just patients who happened to choose Stan's clinic rather than, say St. Jude or M.D. Anderson.

I also think Wayne is alluding to the "Cancer Treatments of America" commercials so pervasive on daytime TV, where supposedly Stage IV cancer patients are now living happy, healthy lives.

By Marc Stephens … (not verified) on 17 Feb 2013 #permalink

Make that "Cancer Treatment Centers of America."

By Marc Stephens … (not verified) on 17 Feb 2013 #permalink

Wayne tells us that “most” clients at Count Stan’s are NOT in any kind of clinical trial

So he's re-branding himself? No antineoplastons, no experimental treatment, no Brave Maverick Doctor? Switching to being the Recognised Pioneer of Genetic-tailored Oncology, where he prescribes random cocktails of chemotherapy?

By herr doktor bimler (not verified) on 17 Feb 2013 #permalink

Wow, interesting turn of events. I guess the FDA has really put a muzzle on what he can and can't say or advertise....I wonder, with all of those patients who were told they were part of a clinical trial (and I guess this would be directed to the families, since the patients are dead now, may their souls rest in peace or something), might have been given incorrect information?

The first product of Wayne Dolcefino as a shill for Count Stan is now posted on the home page of the clinic's website. It's a two minute video shot around Christmas at the clinic.

So now Dr. Josh Duhamel joins the ranks of other celebrity doctors like Dr. Rob Schneider, Dr. Jenny McCarthy and Dr. Suzanne Somers. Duhamel is shown wearing a lab coat (!) as he tours the facility and then proclaims that "all the evidence is there." And he wants to do his best to spread the word. Moron.

http://www.burzynskiclinic.com/

Is that Dolcefino's own voice narrating this little work of fellatio? If so, I feel sorry for the TV viewers of Houston who had to endure him for over two decades.He uses that phony, over-modulated carnival barker cadence (kind of appropriate) to try to generate excitement and enthusiasm.

By Marc Stephens … (not verified) on 17 Feb 2013 #permalink

@MSII - when will people realize that YouTube is not a substitute for real Scientific Evidence.....dammit Wayne, get Burzynski to publish his damn results!

Lawrence,

But AN ACTOR says all the evidence is there! What more do you sheeple need? Think for yourselves! Something something something Big Pharma!

By Marc Stephens … (not verified) on 17 Feb 2013 #permalink

How will DJT restrict himself to 140 characters?

Anyone willing to follow him?

By Marc Stephens … (not verified) on 17 Feb 2013 #permalink

MSII: by tweeting 2,000 times a day!

By sheepmilker (not verified) on 17 Feb 2013 #permalink

Hope his data plan doesn't bankrupt him.

By Marc Stephens … (not verified) on 17 Feb 2013 #permalink

An analysis of the "Japanese research" that Merola says will be exposed in his new infomercial (hope I'm not annoying Orac with all these links to other skeptic sites):

http://www.thetwentyfirstfloor.com/?p=7644

By Marc Stephens … (not verified) on 17 Feb 2013 #permalink

@MSII

I hope his data plan DOES bankrupt him.

@MSII RE: #293

I thought I'd pop in and say hello! I made 2 fold error when I said in my post about Josh and the chakras. Firstly, I said Merola made the film and he didn't. Secondly, I ignored my better judgement that was saying "I know that voice"! Having spoken on the phone to him, I should have realised... That is the voice of Wayne Dolcefino.

Currently writing my next post. It's my reply to his email, replying to the last post! That made sense, right?!

By David James (not verified) on 17 Feb 2013 #permalink

David,

Great job on the Wayne Dolcefino interviews!

I'd love to know if Wayne, or Count Stan himself, actually condones the abusive tone taken by his Twitter supporters like @BurzynskiSaves who calls critics "c*nts" and "f**king r*tards" among other slurs. Is that the mature discourse Stan et al. are hoping for? Has the clinic ever disassociated itself from this Twitter guy?

By Marc Stephens … (not verified) on 18 Feb 2013 #permalink

Thank you!

It's been an interesting week or so! I have enjoyed my interactions with Wayne, but I feel from this point it'll go one of two ways. Either he'll keep his journalistic integraty intact, really look into the questions I've raised or he won't and well see things turning a little more sour. I hope it's the former.

I'd relish the opertunity to have a chat with Stan. If that happens, I will ask him about the online behaviour of some of his more vocal supporters. When @BurzynskiMovie referred to me and jo brodie as f****** r*tards (it was "movie" and not "saves"), It reminded me that I'm always going to be the better man. I have no need for name calling.

That Wayne was upset by my "journalistic style" may speak to the approach he's going to take with me in the future... We shall see!

Also, drop me a DM. I've given up trying to figure out who you are! :-)

By David James (not verified) on 18 Feb 2013 #permalink

David,

We've been talking about you and your work on the "Josh Duhamel..." thread. You have lots of fans here.

I'll be in touch.

By Marc Stephens … (not verified) on 18 Feb 2013 #permalink

Since when did the FDA become GOD? The FDA dose not care about you or me. They represent the DRUG corporation people and if it does not make money for them, then FUCK you.

@mary

Stay classy, mary, stay classy.

@Mary, have you checked out the story of Denise D at The OTHER Burzynski Patient Group? Your hero has precisely your attitude towards a dying woman who lacked the money he demanded as the price of his worthless nostrums.

Mary,

The FDA dose not care about you or me.

I very much doubt that's true. I believe that the vast majority of people who work for the FDA do so because they want to help to make sure that food and drugs in the US are safe and effective. The FDA and drug corporations consist of people like you and me who get cancer and other illnesses, and have loved ones who also get sick. They have just as much motivation for wanting safe and effective medical treatments as you and I do.

By Krebiozen (not verified) on 20 Feb 2013 #permalink

@MSII

Guess djt didn't attract many followers to his blog.

Must be lonely for him, spewing nonsense to no one even remotely interested in his verbal diarrhea.

Whoever wrote thus blog is a dumbasd! Fuck you guess some big corporation is writing your paycheck.

Thanks, Rey, for further demonstrating the character of Burzynski supporters.

So it nows looks pretty certain that Dolcefino was lying through his teeth when he said the FDA's visit to Count Stan's Little Shop of Horrors was "routine at the end of the Phase II trials." Bob B. has obtained the observation notes from the FDA compiled during their stay at the clinic earlier this year. Horrifying stuff.

Here's Bob's blog, as well as a .pdf of the notes themselves.

http://skepticalhumanities.com/2013/03/26/a-letter-to-the-pbs-ombudsman…

http://skepticalhumanities.files.wordpress.com/2013/03/burzynskiform483…

By Marc Stephens … (not verified) on 26 Mar 2013 #permalink

In other news, I have indeed received a letter back from the California State Board of Pharmacy regarding Pediatrica, and I have a contact name. I doubt anything will happen, but you never know.

Re: the FDA notes, is anyone surprised to discover that the IRB has been doing what it should? Because I wasn't.

Ha! Diddums is a 9/11 troofer!

By W. Kevin Vicklund (not verified) on 12 Apr 2013 #permalink

Six impossible things before breakfast.

Not wanting to give Diddums any increases in hits, can anyone who has visited give me a quick tour of the highlights from his blog? That is, if they were legible enough for such a thing?

Highlights from Diddums? Do they exist? Or are there only low points?

Flip, he's just envious of us :)

like a baby (of which I could think is his mental age), he need constant attention.

That's the only highlight of his blog.

Alain

Thanks guys - looks like I'm not missing much then!

@flip - as incoherent as his posts here.....still with the same damn stupid formatting too.

I'm not surprised Lawrence. One wonders how he managed to create a blog at all, given his lack of understanding of basic formatting.

Hi to all, now I didn't read every single blog on here hopefully not all of you are that ignorant.
I have a dear friend who was diagnose with brain cancer when he was a little boy he now I think 22 yrs old .. I know this family very well.. if it wasn't for Dr, Burnzynski he would of died. His protocol has an 85% cure rate.. quite remarkable if you ask me..You have nothing to loose by going to him when you have a terminal illness..The FDA & the pharmaceuticals are bunch of greedy people who have no concern for your well being..cancer treatment have not improved FDA has pushed that you need chemo before you can see Dr. B but then by that time his protocal life expectancy goes 30%..Do your research people.

I can haz cookie plz...

By janerella (not verified) on 17 Apr 2013 #permalink

Donna,

Can you point to evidence for this (your words): "His protocol has an 85% cure rate" ?

A point repeatedly made here is that Burnzynski hasn't published the results of his "trials". That being the case, there would be no published evidence supporting a particular 'cure rate'.

His protocol has an 85% cure rate.. quite remarkable if you ask me.

Dear Donna, It is a well-known fact that random statistics made up on the spot are more convincing if they have more decimal places. I suggest that on your next attempt you change it to "84.72%".
kthnxbai

By herr doktor bimler (not verified) on 17 Apr 2013 #permalink

Do your research people.

We did, that is why we know he is a fraud.

By Militant Agnostic (not verified) on 17 Apr 2013 #permalink

HDB,

I know you're joking but "Dr." Leonard Coldwell claims a 92.3% cure rate for cancer. I've always enjoyed his effort to go to one decimal place. Like 92% wouldn't be enough.

He's an accomplice of Kevin Trudeau so that says a lot about his credbility. His name wasn't even Leonard Coldwell until 1999, but that's another story. I'm surprised there's such a lack of material about him on the the skeptic sites as he served as my entree into the world of woo after hearing him on "Coast To Coast" about a year-and-a-half ago.

By Marc Stephens … (not verified) on 17 Apr 2013 #permalink

@MSII - do you think the clinic issues a set of "talking points" to parents / patients when they start the protocol? To address questions that invariably get asked?

The stories / claims are all way too similar for there not to be something that gets hammered into them as part of the "indoctrination" process.