Burzynski: harming without care?

A guest post by Keir Liddle^

Skeptics and critics of Dr Burzynski’s antineoplaston treatment have been scratching their heads of late at the removal of all references to ANP on the clinics website.

Why did a reference to Dr Burzynskis miraculous brain cancer cure suddenly disappear? Was it because of an FDA letter regarding inappropriate and inaccurate promotion of the treatment?

That seemed the obvious explanation until @medtek on twitter discovered that the FDA had been doing a lot more than simply sending the clinic letters.

According to a Burzynski patient blog*, the clinic has been undergoing an FDA audit.

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.

But why has the clinic been prevented from taking on new patients? The answer is truly shocking and raises very serious questions over the standards of medical care being provided at the clinic. Again from the patients blog;

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

The risk of hypernatraemia arising from ANP treatment has been well documented during the investigations of skeptics and critics into the clinic. Concerns have been raised time and again about this potentially fatal side effect and the clinics response to it. I paraphrase slightly, but not much, when I state the clinic’s response to dealing with this side effect was to tell patients to “drink lots of water”.

That the clinic themselves, if this patient blog is to be trusted, cannot advise in more detail the amount of water required for patients and thus risk a child’s life is horrifying.

Here we have evidence that ANP treatment can and does cause harm. To the extent the FDA has had to step in and prevent more patients receiving the treatment. Prior to this all critics could conclude is that the weight of evidence did not support ANPs as a treatment or cure.

Now we can see there is a very real danger from ANP treatments and one that is not mitigated by any medical advice or treatment offered by the clinic.

One would hope this is finally the end game for Burzynski and that after 35+ years of abject failure to show ANPs are anywhere near useful as a cancer treatment he may now be forced to stop selling false hope.

In the late 90′s Quackwatch failed and despite the best efforts of many skeptics and scientists it looked like Dr B would be free to continue.

It’s a tragic shame that it may have taken the threat to a child’s life to finally stop Burzynski.

*The link to the blog has been removed to respect patient anonymity.

^ Keir usually posts at The 21st Floor, which has been offline following a complaint by the live blood analysis quack, Errol Denton. They came back online on 13th February and this post now also appears there.

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188 Responses to Burzynski: harming without care?

  1. I think it is very telling that the FDA may now be in their second month poring over the practices at his clinic. I hope they go through absolutely everything with a fine-toothed comb.

    However, I do wonder why it has taken till now for this to happen? Perhaps it was because they were waiting for the outcome of their case against Burzynski? Who knows, but it’ll be interesting to see the outcome.

  2. Pingback: Burzynski blogs: My Master List | Josephine Jones

  3. Marc Stephens Is Insane

    I’ve been spreading the word on Orac’s site too!

    Welcome back Keir. Any news on the 21st Floor?

  4. I saw that Team Hannah’s partner @PeteCohen offered on twitter to speak to speak to @lecanardnoir or ‘anyone who is against Burzynski’. Anyone take him up on the offer? Difficult situation, as his partner is being treated with ANP.

    • I don’t think anyone did. I for one am very reluctant to engage directly with patients and their families.

      • Yes, probably wise. I keep hoping that more of those who Burzynski has hurt would come out publicly against him. It would help tremendously to put an end to this career criminal’s crime spree. Curious that the deception persists for so many even after they have lost their loved ones. But of course we are talking about people whose lives have been shattered. Hardly likely to want to fight another battle and relive it all.

    • I spoke to Pete a few months ago, when he phoned me out of the blue. He was very reasonable. It was clear to both of us that we had very different perspectives on Burzynski, but we both understood and accepted that, so we were able to have quite a civilised discussion about things. I think it’s actually quite helpful to have that kind of dialogue. Let’s remember, people like Pete are the victims here, not the bad guys.

  5. Marc Stephens Is Insane

    Hannah and Pete just can’t seem to accept that they got lucky. I hope they stay lucky.

  6. I wonder if the FDA could go so far as to stop those currently taking ANPs? Because when those people don’t make it (which would have happened anyway), there will be backlash.

  7. Marc Stephens Is Insane

    Patients are spread out all over the world, and most buy enough for several weeks in advance, from what I understand. Might be tough but they could stop anyone from getting more supplies when they run out…

  8. They were in a similar situation in the late 90s, when patients were campaigning for the clinic. The compromise was to allow ANPs to be used only in FDA supervised clinical trials – though the supervision seems to have been lax for a long time.

  9. Marc Stephens Is Insane

    Adam,

    Yes, they’re the victims, but they’re also proselytizing for Stan so thery could conceivably be drawing more victims into the web.

    They don’t see themselves as victims. They’ve become an extension of Burzynski’s PR machine and that’s the problem.

  10. Adam, I’m curious. Why did Pete want to talk to you? Did you get the sense that he thought he could change your mind, or the opinion of other skeptics? He has talked about promoting Dr. B. as mission. Do you think he wanted to debate? Or was he actually looking for information?

    • Fair question, Fiona, but I don’t know that Pete regarded the conversation as something for public consumption, so I hope you’ll forgive me if I don’t answer it in such a public forum.

  11. Of course. I was going to add the sentence, “only if it would be ok to share”. Just curious.

  12. I had a series of very humbling email exchanges with the father of another Burzynski patient. As with Adam and Pete, there was little chance we’d agree on Burzynski, but it served as a reminder of who the real victims are here. I made a donation in memory of his daughter tot he hospice that cared for her at the end, I hope he was not upset y this. I think a lot of money was raised in the end, and I know other UK skeptics who also donated.

    To take the case to the hospice and ask for donations there instead of, as he’d originally suggested, Yes To Life, shows that this parent was not some blind believer i woo, just a desperate and anguished man of great determination and no little class, who was cynically manipulated by a quack. I will not easily forgive Slippery Stan for this betrayal of a model parent and his family.

  13. Even if Dr B was put out of business and told he could never practice any form of medicine again his followers would still believe their little conspiracy theories and blame Big Pharma for silencing such a wonderful pioneer. i’m amazed they never stop to reflect on the fact that Burzynski far more wealthy than the CEOs of the “Big Pharma” companies. It’s a self-perpetuating cycle of blind stupidity unfortunately.

  14. Marc Stephens Is Insane

    Jon,

    Of course he’ll become a martyr and Merola will have to make another commercial to scream “Help Me! I’m being oppressed!” (“Life of Brian” reference…)

    Chapman: I heard the BBC’s Panorama series is doing a “real” documentary” on Bursynski that will not be an infomercial a la Merola. Before she died, the parents of Amelia Saunders posted on their blog they were being interviewed for the documentary. I think Luna Pentagine’s family was interviewed also (she died last summer after suffering horrible side effects in Texas). Do you know anything more about that doc? Panorama took down Scientology a few years ago before any other media outlet was brave enough to tackle the cult, so I imagine they’ll do a great job taking down Stan too.

    Keir: Good luck getting back on line. Can you post another guest column here later explaining why you were shut down? All we heard was rumours about a photo of a certain live blood “physician”.

  15. Marc Stephens Is Insane

    Jon,

    Whenever Burzynski’s wealth is brought to up to Stan Fans, they exclaim “So what?! He deserves it! He’s a hero and he’s saving lives! You don’t think he’s entitled to make money like everyone else?” Then they usually bring up other billionaires like Gates or Jobs (RIP).

    They just don’t get it.

  16. You people are just plain stupid. The patient is responsible for what form of medical care they receive. I know of people who used this clinic and had full recovery. Why don’t you bash radiation and chemo because people choose to go that option and still die. I know a person who actually treats cancer patients with radiation in my town. She, to me, is a terrible radiologist. She makes fun of people that get cancer behind their backs. She says they are idiots for getting cancer. So since she is the only person I know that does this treatment should I think all radiologist are the same. If you are pissed because this doctor makes money, don’t be jealous. Get off you ass, off your computer, go to college and get a job where you make lots of money. I actually make 0 dollars a year and I am not mad that he has more money than me. Why don’t you spend your wasted time trying to support everyone with terminal illnesses, weather they choose to try different types of treatment or just choose to lay in their house and wait to die. If you don’t support this dr and his treatment don’t use them. The title for this blog should be “bitching because I am bored”

    • And the clinic is responsible for giving out misleading information about the treatment, its status, the progression of the patient’s disease, the reasons for lack of FDA approval and so on.

      You do know about informed consent, don’t you? And why the informed part has to include *all* the relevant information?

  17. Obviously @SarahSmith, you’ve never bothered to read:

    http://theotherburzynskipatientgroup.wordpress.com/

    So, what is your opinion about how these patients were treated by “Old Stan?”

  18. I don’t have to read biased people’s crap. This whole blog is based on something someone who doesn’t work at the clinic, is part of the FDA or any other medical field said. So it must be true. It could be something they read off one of your dumb links. But they also said the parents didnt do the treatment the right way. I would say 84% decrease is an awesome result. Apparently they are following directions. There are always people that stuff doesn’t work for. These people tried other options and didn’t work for them. They chose this option on their own. I know doctors who demand the other options work and refuse to see patients again that don’t want chemo or radiation. If you are so worried about what these people are spending, try helping this clinic get approved so insurance can be used. I guess I am a glass is half full type person. I look for the good in things and I have found lots of success stories from this man’s work. All I can say for you people is look deeper. If you would read this babies whole caringbridge you will see there is no other option for her. I am happy they had this choice and it is working. Shame on you for bashing this babies positive results. I hope you or your babies never get a tumor that radiation and chemo doesn’t work for. I hope you or your babies are not completely paralyzed from getting a tumor removed because you have NO other option. Be happy for people. Is that too hard?

  19. Sarah, those are the reports of patients at theotherburzynskipatientgroup.wordpress.com.

  20. Also, I think deep down you hope our babies get tumors.

  21. Pingback: The Burzynski Soap Opera « Majikthyse

  22. @Sarah – if you’re so connected, how about asking why “Old Stan” has released any of his patient outcomes as part of the 60+ Phase II clinical trials that he has purported been conducting over the past three decades?

    Why did he never enroll even a single individual in his Phase III trial, even though, by his patients’ own posts, it seems that he & his staff were telling prospects that they were being accepted into the trials?

    We’d love nothing better that to see a miraculous “cure” for these types of Cancer – so why isn’t Stan releasing the information to either prove or disprove its efficacy? I mean, it couldn’t be that as long as he presents no solid proof, that he can continue to say whatever he wants, right?

    There are two options / possibilities here – if he releases his study information and patient outcomes, and allows for intensive research and replication:

    1) He theories & treatments will be proven – he’s make billions of dollars marketing this worldwide, he’ll win the Nobel Prize & be lauded as one of the greatest medical researchers of all time.

    or

    2) He’s actually a crank & crook – and what he has been pushing all these years is nothing but bad Science and at worst, a scam.

    So, if he believes, really believes, then why not publish? Could it be that the reality is more likely Option #2?

    And if Option #1 is closer to reality, than Stan is still a monster by denying his treatments to the tens of thousands (perhaps 100′s of thousands) of people that could benefit from a “proven” ANP program……

    So, if you dare, please address why Stan has been acting the way he has over the last 30 years?

  23. Don’t be afraid of karma. She is your bitch not mine. There are also porn sites, I guess all those people are really enjoying themselves and it has nothing to do with fake stuff. Why don’t you read about stage 3. You will see you have no idea what you are talking about. Why don’t you see who is supporting this clinic. You will be surprised to see that all these dopes supporting other medical treatment places to try to discredit burzynski actually support burzynski and use your money to help pay. I did say dig a little deeper. If you quit looking for bad in everything and start trying to find good you will look more educated. Love is stronger than hate. Again shame on you. Keep going with this it is fun you showing me how much you care nothing for others well being, people making their own decisions, and you being jealous of someone. Go to each individuals story. Don’t trust one site that looks like someone typed it all themselves. Don’t go to haters links. Look yourself. And trust everything you read in the Internet is truth. I am not really Sarah Smith, I am Sarah Palin.

  24. Why don’t you read the link posted from the people trying to take care of their baby and having successful results. Sounds like this family already answered this question. Since you know so much why don’t you tell this family what is the better way to go. Of course apparently now, because of this the caringbridge for this family is now blocked for people to read. But from what I remember there was no other option. I would do anything and spend any amount of money to help my baby have as much as a normal life as possible. This baby was too young for all other options. There was only 10 other people ever to have this type of tumor. Again this is what I am recalling reading. And it was not costing outrageous amount of money. I guess I should make a website supporting these people, write in italics and everything. Maybe then you would wise up. I did read where you “skeptics” started bashing this treatment on someone that had a brain tumor for 2 years. After this person tried everything they finally tried this method and after one week passed away. You guys were making a big deal and the person had not even taken the meds long enough to start helping. Sorry they waited too long to start. I have someone close to me find out they had a brain tumor, within the month after discovery had one treatment of radiation and died a week later. Will you please start a site bashing radiation? That cost the family a lot of money because the person had no insurance. Oh and if you would have done your homework like I told you to you would really love to see who supports this treatment on this baby. I have seen where many people all over the country are watching this babies progress. So maybe you should find out who these people are and tell them all they are reading the MRI wrong. No way this is working. Maybe the whole caringbridge account is a hoax just to fool lots of people. That has to be what it going on. Since I feel your links are fake, and that is one of them. Thank you doc for helping me, now I realize there is nothing anyone can do or should do because nothing ever works.

  25. @SS – answer the very simple question.

    Why has Dr. B not published a single peer-reviewed study out of his 70+ Phase II clinical trials in over 30 years?

  26. God, he is not my good friend. How the heck should I know why anyone does or doesn’t do anything? Only ones I have seen wanting this crap are the “skeptics”. Maybe he doesn’t feel it necessary to respond to people who make up stuff. Sounds to me like your opinion means nothing to him. Imagine that. Start asking other doctors their business like that and see how many care what you think. I never went to him. Thank goodness I have never had to make that sort of decision. I am just doing research and have seen way too many people complaining how their story was twisted trying to make it look bad when they had good experiences. So doctor, answer my question, what should have these people done with their baby. I would love your excellent medical opinion.

  27. @SS – but that’s not the way that medical research works. Organizations and doctors just aren’t allowed to say whatever they want about their treatments – they actually have to show that they are effective (hence clinical trials), and they need to be replicated by others – again, to show that they are effective.

    For over 35 years, Dr. B has refused to provide any useful information that would allow the general medical community to evaluate his work and replicate it.

    If Pfizer or Merck did the exact same thing, wouldn’t you be first in line screaming bloody murder? Why is Dr. B given a pass?

    Again, why has he refused to provide any relevant information for a true evaluation of his protocols? Why does he charge for clinical studies, when everyone else does not? And of course, why isn’t he being required to actual publish his results so that we can know for sure if his treatments actually work?

    Seriously SS – if the evidence was provided & his treatments actually worked, I think we’d all be extremely excited! Instead, we get nothing but stories – and if you even bothered to read about the patients that Dr. B doesn’t save – you’d notice some very eery similarities between the disease process, that doesn’t seem to be affected by Dr. B’s treatment at all (even though he continues to charge hundreds of thousands of dollars for it).

    Another question for you – you do realize that if Dr. B was able to prove that his treatment worked, that it would be covered by insurance, right? All of these families would not have to bankrupt themselves – which they have to do currently, because Dr. B refuses to publish……why are we the bad guys for asking questions?

    Again, why is Dr. B given a pass when if a multinational did the same thing, you’d be all over them to show their results????

  28. @SS – for any particular circumstance, don’t you feel the family should be given 100% accurate information regarding the treatment options they have in front of them?

    Please show us where the published results are that show that Dr. B has actually cured anyone……better yet, show us any peer-reviewed results that would allow anyone at Dr. B’s clinic to quote cure or remission rates?

    When you go buy a car, would you be happy if the dealer showed you a picture of the car & that’s all you had to buy from? You weren’t allowed to test drive it, you weren’t allowed to see safety information, or even touch it before committing to purchase……that’s what Dr. B is doing – he’s showing his patients a picture of a cure, without any actual proof to back up what he’s saying.

    Why in the world do you consider that to be acceptable?

    Sure, we’re skeptical – but we’re also more than happy to see real evidence and real evaluations of treatment….which Dr. B has not provided.

  29. My friends neighbor has a daughter that has had complete results. That is the whole reason I am even looking into this. Sorry to burst your bubble. Also I have bought a car just by looking at a pic. Actually 3. eBay is awesome. Drove the cars for awhile then sold them and made money. I have all the proof I need. You just refuse to look for good. And if you want them to have all the info why is there so many statements out there where people’s words are twisted to look bad. As soon as the comment like that shows up it is deleted by the host of the site. Again what should these people have done to care for their baby?

  30. @SS – you’re purposely avoiding or just misunderstanding the question….if Merck or Pfizer refused to provide clinical studies to show their treatments worked, but instead told you to “trust them.” Would you?

  31. Marc Stephens Is Insane

    Sometimes there are “no other options.” you just have to accept the inevitable and do the best you can with the time left. Putting little kids through Burzynski’s torture in their final days is just cruel. Watch the BBC documentary on Great Ormond Street Hospital and look what poor Luna Pentagine was subjected to in her last months. I’m sure she would have preferred to go to Disneyland and spend time with family and loved ones rather than be dragged halfway across the world and back and suffering from almost fatal levels of sodium.
    Not to mention the families goes broke and then spend years afterwards not only dealing with the death of a child, but financial ruin.

  32. You asked if I have heard of results. I answered. You avoid questions too. It’s clinical trial. I would trust them because I have seen positive results with my own eyes. So yes I would trust them. Have actually met one patient who it has worked for. Only person I know who used him and it worked, I would say that’s pretty good. Yes I would use his clinic. Yes I would use and trust them. Until I see actual negative facts for my own eyes, not crap people make up on the web I will support bursynscki.

  33. Marc Stephens Is Insane

    Some of Orac’s readers as well as Dr. Paul Morgan have written complaints about Pediatrica to the FDA and California regulatory bodies. This is a guy working out of a laster tag facility in strip mall in San Bruno who is shipping ANPs around the world if you e-mail him a “prescription.”

  34. Marc Stephens Is Insane

    That should have read “laser” tag.

  35. @SS – no, actually I asked if there were any “published, peer-reviewed” results….of which, we have seen exactly NONE.

    N=1 does not equal an effective treatment, since there is no way to determine if the treatment was the cause, or if it was something else.

    There is a reason why medical research is conducted in an open & peer-reviewed fashion – so it can be determined if any particular drug or treatment is truly effective & what the side-effects might be.

    As far as any of us can tell, Stan is providing no proof, no evidence & just telling people what they want to hear. You’ve made it abundantly clear that you don’t care – even though there is no good, real evidence that what he is doing actually works (because you’re just taking his word for it).

  36. Marc Stephens Is Insane

    JJ,

    That company is acting as an unlicensed pharmacy shipping unlicensed and unapproved drugs around the world. How can any doctor anywhere write a “prescription” for ANPs? This company has to be some kind of front for Burzynski. He’s either directly involved or there are some layers of insulation to protect him but it’s got to be connected to Houston.

    On the website there’s a paragraph that “unused ANPs” (maybe after the patient dies?) can be returned for credit. A reader at Orac’s blog found FDA paperwork that says it is specifically illegal for a pharmacy to accept returns of prescription drugs, and for good reason. Would you want to pump something into your heart that someone else has purchased and then returned? Package seals can be tampered with (remember the Tylenol scare in the USA?)

    Each day some new dubious practice about Stan is brought to light. I count the days ’til the FDA pulls the plug and he is forced to scurry off to Tijuana.
    Maybe he’ll just retire and let his son Greg take over the family business.

    Do you pop in to Orac’s blog once in a while? There’s a lot going on there re: Slimy Stan. Sometimes I cross-post but it seems some people there don’t know about you and vice-versa. We can all work together from both sides of the Atlantic to put this guy out of business.

    • I know nothing should surprise me any more when it comes to Burzynski, but this just gets worse and worse.

      I have no idea what’s going on with Pediatric USA, just that it looks very fishy and must surely be illegal (probably in several ways). I wonder is there a reason this operation is outside Texas? And has the ban on shipping ANPs across state lines expired? As you say, it has to be connected to Burzynski. You wouldn’t get ANPs from anyone else. They are ultimately coming from Burzynski. Of course, as we know from the TMB case, Dr Burzynski has previously been able to slither away from justice by blaming his staff, and the more confusing and complicated things are, the longer I expect it would generally take for the authorities to take action and the more difficult and expensive the action would be. And I hadn’t noticed the bit about being able to return the products – astounding.

      I do read all Orac’s Burzynski posts and link to regularly, but I don’t read the comments enough and have hardly posted there at all. I must remember to do so more often.

      Also, I’m sure it’s got nothing to do with the FDA and Burzynski, but I noticed from their website that Dart Ops are looking to expand into Mexico!

  37. You are right I don’t care. I haven’t seen results. I could care less about what peer report crap you want. Just keep reading all the junk on the web, hell keep posting it. Like I have said before, I hope you or your babies never have these problems because I would hate for you to just sit back and do nothing when there are other options. You probably don’t even personally know anyone who has done the treatment. Until you do you haven’t got a leg to stand on. I am a see it to believe it person. I HAVE SEEN IT WORK! End of story

  38. @SS – again, N=1 doesn’t mean a thing. If I was faced with this circumstance, I would demand that Dr. B release to my oncologist all of his pertinent study records, so they could be reviewed to see if what was said was actually true…..why are you so afraid of having Dr. B’s treatments put under the microscope?

    God forbid other researchers be able to replicate his results (if he has them)….seriously Sarah, why are you so defensive? What inherent problem is there that “Stan” can’t do exactly what every other medical researcher in the world does (i.e. publish their results and get confirmation from multiple sources that they actually work)?

    Care to explain exactly why you think he won’t do that? What makes him so special that we should “just take his word for it?”

    What if, on the very off chance, that his treatments are the next miracle cure, that since he hasn’t published & the treatment isn’t widely available, that tens of thousands of people across the world have died needlessly?

    What do you say to those families Sarah (if, indeed, Stan has found a miraculous cure)?

  39. I say sorry. Just as i would to people who die for other reasons. Maybe you should look at other countries and what they are doing. You are one minded. That is why you are so annoying to me. If it is not working all you have to do is quit and start something else. What makes you think he doesn’t communicate with the other doctors involved in a persons care. Oh that’s right you have no idea because you know nobody personally that has done his treatment. As I have said before people try other methods and still have fatal results. What do you say to people who used chemo, radiology and still passed? Did you know there is another doctor who pretty much just shoots baking soda into tumors and it has actually made the tumors go away? And I really like how you are pretty much putting words in my mouth. Just proves to me you are one of those people that twist the truth. Since you think he has the miracle cure try getting his meds FDA approved so every doctor can prescribe them. You have one argument and it really has no Merritt. You have no clue what goes on between these doctors. I would love to tell you and your skeptic group how you did a major screw up but I don’t want you to start bashing another great organization. But it is a really funny story and proves the skeptic group did no research. It is how I came across this site. You guys are so worried about his research being published yet you publish something saying it is truth when the source has really no Merritt

    • Sarah, I also personally know people whose child has been cured from the horrific disease of cancer with Dr. Burzysnki’s treatment. I know many who went to Dr. Burzynski, and many who had success with his treatment. All the “haters” posting here…..with all their “facts”…..they are all incredibly ridiculous! It’s really jaw dropping how off they are with their “facts”. No one is forced to see Dr Burzynski…..no one flies all the way to Texas and just starts the treatment on Day 1. No one has to continue if they don’t want to. Ooh, all you (bored/ridiculous) bloggers are on a mission to expose the “real truth” and google your days away to save us all from the evil Dr. Burzynski. Pleeease…….take Sarah’s advice and put your effort and energy into fundraising for cancer research or SOMETHING productive instead of copy and pasting selected fragments from personal webpages of people struggling with cancer. The webpage you cited is for a baby girl whose tumor has reduced over 80% on Burzynski’s treatment!!!!!!!!! I personally know of 5 other patients who have been helped with this treatment. Not one lucky person. 5. I know so much more but will not spend keystrokes trying to dissuade you b/c you just love this! You are ADDING to people’s pain and stress, not helping. You don’t think they know you are on their websites and commenting on these blogs? And if you think you are helping, take yourself off the pedestal. No one starts on Dr. Burzynski’s treatment or continues on it against their will—people visit the clinic, they talk with patients, they consults with doctors, medical and financial information is completely disclosed weeks and months before treatment begins—and the treatment can be stopped at anytime. Stop assuming his patients are just hopeless and mentally impaired. If YOU get cancer and don’t want to use his treatment as an option…..then DON’T, but leave the rest of the world alone. Take off your red capes….we don’t need you. I agree with Sarah…shame on you all!! Keep blogging and raising suspicions and encouraging the FDA to rush in and halt this doctor while they “investigate” AGAIN……….Will you cheer if this happens? Will your blogs be on fire as you wait on the edge of your seats to “see what happens”? Oh goody! Excitement for your boring little lives! You better praise God it’s not your baby, son, daughter, wife/husband, mother/father whose lifesaving treatment is stopped at a critical point……shame on you all!!! This is my one and only post…….please don’t respond to it or expect a response. Sarah..I applaud you……point for point……these other bloggers are beyond ridiculous……

  40. Marc Stephens Is Insane

    The former “doctor” you refer to, Tulio Simoncini, has been convicted of manslaughter charges in Italy for his phony baking soda treatment. He has been disbarred and is no longer allowed to practice medicine. There is not a single survivor of his baking soda nonsense.

  41. Marc Stephens Is Insane

    The word is “merit.” And it’s not our job to get Stan’s drugs approved; it’s his. And in over 35 years he has not done anything to try.

  42. Marc Stephens Is Insane

    “Research.” I don’t think it means what you think it does. Hint: YouTube videos are NOT research.

  43. She means ‘search’, not ‘research’.

    They are distant cousins of course, but, particularly in the area of quackery, they are assumed to be synonymous. However, as all scientists know, particularly where health is concerned, it’s vitally important to understand the severe limitations of ‘search’ and how it rarely leads to reliable information. Unlike ‘research’.

  44. @SS – you have made it abundantly clear that you have no idea how the actual process of medical research and approval works……for the FDA to approve “Old Stan’s” treatment, he needs to publish. Since he hasn’t, the FDA can’t approve – so the onus is on “Old Stan,” not us.

  45. Sorry, wrong country. The doctor I know of is in the US. Thanks for the spelling correction. I forgot this was a spelling bee. You have made it clear that no matter what people with no other option should just lay down and die. Good job! I am doing my own personal research. Why are you all so hostile? I guess I am making points that piss you off. Oops. You apparently know of no one personally who has used Burzynski, like I do. So just keep reading your one site that says what you believe. Keep following your Facebook page with like 200 followers. And keep being idiots by donating money to this doctor you hate. And yes you skeptic idiots donated 30,000 dollars to an organization that supports the guy you hate. Should have done your searching. Oh and me and like 3 others are the only ones commenting. Big group of followers you got there.

  46. Marc Stephens Is Insane

    There are dozens of science blogs all writing about Burzynski. From all around the world. Check our Respectful Insolence, written by a breast cancer surgeon and PhD researcher. A “real” researcher. The medical profession around the world is working to shut him down and it looks like it will happen soon, thanks to the FDA audit currently taking place.

    No matter what country a doctor is in, NO ONE has ever cured cancer by “shooting baking soda into the tumour.” That is medically and biologically impossible. Did you see a TouTube video for that too?

    Care to show some proof for your accusation that we have donated money to Stan? Or is another of your empty, ignorant, unfounded claims?

  47. Marc Stephens Is Insane

    Make that You Tube, before you jump on me for making a typo.

  48. Marc Stephens Is Insane

    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.

  49. Marc Stephens Is Insane

    JJ,

    Pediatrica USA specifically mentions Burzynski and his (now-abandoned) ANPs. I noticed that Mexico thing too–pretty ironic!

    I have already informed the FDA about Pediatrica, specifically that they accept returns of unused pacakges of ANPs, which directly violates their own policy.

    Glad you’re back up. I thought either a “Harley St. physician” (sic) or Scummy Count Stan had you shut down.

  50. Marc Stephens Is Insane

    JJ,

    As things get worse and worse for Stan day by day, the crisis management aspect will become the main part of his job. What legitimate doctor needs “crisis management”? Once word spreads about the shutdown, I’m sure Wayne’s presence will be felt in the blogosphere.

    Any idea what Sarah (who has changed her username, I notice–the first step toward sockpuppetry) is drooling about that we’ve donated $30K to Burzynski?

  51. @SS – I would love to meet one of “Stan’s” success stories, but the problem is they just keep dying……

    Also, Stan won’t release his trial results, do we can’t even tell the rate of successful outcomes vs. unsuccessful ones.

    You may take a chance buying a car, sight unseen, but are you really going to put your life or the life of you child in the hands of someone who refuses to offer proof that his treatment is either safe or effective? And, at the same time, while not offering a shred of actual proof, charges hundreds of thousands of dollars to desperate parents and individuals?

    The least he could do is publish so maybe instance would cover it, right?

    So, how is asking for evidence and publishing his trial results being mean Sarah, I would like to know?

  52. Marc Stephens Is Insane

    If Sarah’s cousin’s neighbour (or whatever) was REALLY cured by Count Stan, then we’d love to read the journals and papers documenting her cure. You think he’d be proud to publish a success story. But instead, he leaves it up to his customers to do YouTube videos and set up blogs instead of publishing. And who knows what other treatments this person has had along with Count Stan’s magic.

    The “neighbour’s friend” thing sounds like all those urban legends. There’s even a meme for it: FOAF. Friend of a friend.

  53. Marc Stephens Is Insane

    Cross-posted from Orac’s blog. Some people don’t read both blogs, so I’m being self-indulgent by posting this again, about Wayne Dolcefino.

    Based on the story linked below 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 sh*t 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 was arrested in 2009 for criminal trespassing.

    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-wayne-dolcefino-targets-mayor-parker-but-is-there-anything-nefarious-to-find/

    http://www.houstonchronicle.com/entertainment/article/Wayne-Dolcefino-s-second-career-helping-people-4129074.php#ixzz2Kdirdcy7

  54. Pingback: Burzynski: in dire need of credibility | Josephine Jones

  55. Marc Stephens Is Insane

    There is NO WAY St. Jude’s supports Count Stan. Their doctors won’t even see patients who have been to the Burzynski clinic, based on several patient reports.

    I’m well-aware of the “birthday drive” to raise the money (I donated a small amount) but I don’t see how it could in any way have been misinterpreted to mean any of it went to Burzynski.

  56. Marc Stephens Is Insane

    Try a homeopathic dose of salt instead: better for your blood pressure! :)

  57. Marc Stephens Is Insane

    Re: The Merritt mistake. On Kassidy Merritt’s blog, there’s a picture of her holding Alynn, the baby in question whose parents have blocked their CaringBridge access. SS, who is defending the baby’s parents’ decision to go to Burzynski, must have made a Freudian slip.

  58. Marc Stephens Is Insane

    So twait a minute…here was a Wayne Merritt AND a Kassidy Merritt who were both patients of Count Stan?

    I think it’s more likely that SS is connected to Kassidy Merritt, a teenager whose blog is still very supportive of Count Stan.

    I wonder if the two Merritt patients are related. Did one recommend the other?

    http://kassidysroadtorecovery.blogspot.ca/

  59. Marc Stephens Is Insane

    First sentence fail. Should be:

    So wait a minute…there was a Wayne Merritt AND a Kassidy Merritt who were both patients of Count Stan?

  60. Marc Stephens Is Insane

    Me neither. I had seen Wayne’s story on TOBPG site, but came across Kassidy’s story last night. At first I thought Wayne was Kassidy’s father, and the story on TOBPG was in fact about one family. But it’s two different families. If you Google Kassidy Merritt there are several links to fundraising campaigns to get her to Houston. She seems to be doing well so far.

    I always wonder why Burzynski patients, and others in such dire circumstances choose to post the most private, intimate details of their lives on blogs. If you want to keep family up to date, that’s fine. Send e-mails. Unless the whole point of the public blogs is to elicit sympathy and more money.

  61. Marc Stephens Is Insane

    Funny also how SS capitalized both instances of the word Merritt, and unlike some spittle-flecked screeds from others who use random capitalization for emphasis, those were the only two times she capitalized uneccessarily.

  62. Marc Stephens Is Insane

    Unnecessarily. My keyboard is making spelling errors again!

  63. Pingback: Burzynski: An interview with Wayne Dolcefino | Josephine Jones

  64. Pingback: The 21st Floor » Blog Archive » Burzynski: In dire need of credibility

  65. SarahSmith. Aka. "SS". As you have been calling me.

    Haha, you guys changed my name to SS. Apparently you don’t read everything. Which brings another point. Why believe people that don’t read everything. What was this family suppose to do? All i am asking for is what other methods theses people should take. Message me suggestions and I will tell you why that wouldn’t work. I don’t care if I spell wrong. I have an iPad and it usually just puts what it wants. Doesn’t bother me any. Since I am dealing with a bunch of crap here with people who have know idea what is going on in the real world, I think it would be more fun to clean my dogs crap out of the yard. More interesting. And my pets are way smater .

  66. @ss

    Stay classy, ss., stay classy.

    Incidentally, why haven’t you shown any peer-reviewed information? It is because you know you can’t do it?

    But again, please keep spouting off your misinformation. Show to the world your ignorance of real science and support of pseudoscience, quackery, and malfeasance.

    You have shown yourself to be a fool at best, and as such, deserve nothing more than to be laughed at.

  67. I am not his peer. Again you are saying nothing but crap. Be negative and hateful to everyone in the world. Still nobody has answered what this family should have done. If you are so smart and all scientific please tell us your theories. I am not spouting off mis information. My iPad really has auto correct. And yes my dogs are smarter than you. And that is classy white trash to you big scientists. You keep talking to me like I am doctor. Shows even more how ignorant you are. You can prove nothing either. These people I know being or have been healed are all in my imagination. Apparently I made them up. Silly me. Also, still none of you geniuses have explained to me why radiation and chemo don’t work for everyone. You have no answers. NONE? Please avoid all my questions again. You would think since you are trying to get people to believe your theories you could do more then send me to something that looks like something I could make up in an hour. I will ask these quack doctors that are supporting his patients at the next big doctor/non patient convention why they do, and why they see results. Also I will tell the organization you did your fundraising for to not support this doctor anymore. No child that is having to use this doctor deserves their support. Just glad they don’t have a negative attitude like all 10 of you.

  68. Sarah, I also personally know people whose child has been cured from the horrific disease of cancer with Dr. Burzysnki’s treatment. I know many who went to Dr. Burzynski, and many who had success with his treatment. All the “haters” posting here…..with all their “facts”…..they are all incredibly ridiculous! It’s really jaw dropping how off they are with their “facts”. No one is forced to see Dr Burzynski…..no one flies all the way to Texas and just starts the treatment on Day 1. No one has to continue if they don’t want to. Ooh, all you (bored/ridiculous) bloggers are on a mission to expose the “real truth” and google your days away to save us all from the evil Dr. Burzynski. Pleeease…….take Sarah’s advice and put your effort and energy into fundraising for cancer research or SOMETHING productive instead of copy and pasting selected fragments from personal webpages of people struggling with cancer. The webpage you cited is for a baby girl whose tumor has reduced over 80% on Burzynski’s treatment!!!!!!!!! I personally know of 5 other patients who have been helped with this treatment. Not one lucky person. 5. I know so much more but will not spend keystrokes trying to dissuade you b/c you just love this! You are ADDING to people’s pain and stress, not helping. You don’t think they know you are on their websites and commenting on these blogs? And if you think you are helping, take yourself off the pedestal. No one starts on Dr. Burzynski’s treatment or continues on it against their will—people visit the clinic, they talk with patients, they consults with doctors, medical and financial information is completely disclosed weeks and months before treatment begins—and the treatment can be stopped at anytime. Stop assuming his patients are just hopeless and mentally impaired. If YOU get cancer and don’t want to use his treatment as an option…..then DON’T, but leave the rest of the world alone. Take off your red capes….we don’t need you. I agree with Sarah…shame on you all!! Keep blogging and raising suspicions and encouraging the FDA to rush in and halt this doctor while they “investigate” AGAIN……….Will you cheer if this happens? Will your blogs be on fire as you wait on the edge of your seats to “see what happens”? Oh goody! Excitement for your boring little lives! You better praise God it’s not your baby, son, daughter, wife/husband, mother/father whose lifesaving treatment is stopped at a critical point……shame on you all!!! This is my one and only post…….please don’t respond to it or expect a response. Sarah..I applaud you……point for point……these other bloggers are beyond ridiculous……

  69. sebastianarmstrong

    Cut the crap you two. It’s simple Burzynski has been doing unsuccesful trials for 35 years. Some patients get better, but he has not got any evidence that it is actually the ANP doing anything at all, which is why he simply doesn’t publish his research. He can continue to use anecdotes that DO NOT show that the ANP is doing a damn thing, whilst charging a fortune for the privilege under FDA trials, but that does not mena that his ANP’s are doing a thing. Unless you have any evidence that the ANP’s themselves are actually doing anything then please stop telling peopel to give Burzynski their money, until he actually conducts a proper trial it’s still a compeltely unproven treatment that has not been shown to have any greater effect than existing treatmetns, and actually seems to be more harmful tot eh body than many forms of chemo, givne the amont of water that people have to drink.

    If you think that your dog is smarter than me, I guess that shows more about your cognitive ability than mine or the dogs.

  70. Still no answer. Wow you told me😱

  71. @SS – perhaps you should speak to an oncologist. They would be happy to discuss the efficacy of various treatments on various types of Cancers and legitimate research that is improving the odds daily.

    Unfortunately, since Old Stan refuses to release case or trial information for actual peer-review, we have no idea if his treatment actually works (as opposed to every other Cancer treatment, which is thoroughly vetted and tested through the entire clinical trial process).

    I have multiple friends who are alive today because of conventional Cancer treatments – I see a lot of Dr. B’s patients that are hailed as “success stories” in the past, but are now dead.

    So, stop throwing out a bunch of emotional BS & answer our question – why hasn’t Old Stan published his clinical trials?

  72. Still proved nothing. And asking me the same questions I have already answered. Man you really know how make no point at all. Will you please ask me the same questions again? And will you keep posting the same crap the other 10 people posted? Two oncologist support this treatment. That is all I have looked into. I want to know what other options this baby had. You can’t answer that because you know there was no other option. This whole page is BS. I am going to go write on the blogs bitching about chemo and radiation. Heck maybe even the surgery ones. Tell me again how little you know. Oh wait, let’s ask old Stan since he must reply to nobodies like you and I.

  73. sebastianarmstrong

    You are hilarious, other options include giving me all of the child’s money and me leting them die whilst givign them somehting that has absolutely no evidecne to suggest it actually helps. It is exactly the same as using ANP’s in effect, except you don’t get the side effects, but for the fact it woudl eb me getting rich of a baby being ill not Dr B.

    Just becuase you don’t liek the other options, it does nto make Dr B ethical honest or effective, it is however undeniably expensive and toxic with massive reductions in the patient’s quality of life during treatment/ their final days in many cases.

    Yet you approve of this for some reason, you certianly have not looked into it you know bugger all about how Dr B has no evidecne to back up his calims that it is safe or works, and seemignly refuse to acknowledge that he has ben told to stop makign those claims because htey are misleading, yet without makign those claims he cannot hope to get people to part with their money so easily. when he gets told to stop makign those claims people like you start making them for him, with exactly the same compelte lakc of evidence that he has produced. it is fair to challenge you as to why you are promoting a completely unevidenced very expensive treatment to extremely vulnerable people. If you don’t have the evidence that ANP’s have any actual effect (and let’s be cleaer neither you or Dr B have the evidence that it works) please stop telling people to use it.

  74. Marc Stephens Is Insane

    I already answered the question above. Sometimes there are no options. As horrible as it might be, sometimes you have to accept and face the inevitable. Try scrolling up and reading my reply when you were still using your other user name.

    Now you answer our question: how did we “fundraise” for Count Stan? Where’s your proof?

  75. Marc Stephens Is Insane

    A) There isn’t a real oncologist on the face of the Earth who has supported Burzynski; let alone two.

    B) I’ll reprint my answer of Feb. 10, since you seem to have missed it:

    Sometimes there are “no other options.” you just have to accept the inevitable and do the best you can with the time left. Putting little kids through Burzynski’s torture in their final days is just cruel. Watch the BBC documentary on Great Ormond Street Hospital and look what poor Luna Pentagine was subjected to in her last months. I’m sure she would have preferred to go to Disneyland and spend time with family and loved ones rather than be dragged halfway across the world and back and suffering from almost fatal levels of sodium.
    Not to mention the families goes broke and then spend years afterwards not only dealing with the death of a child, but financial ruin.

  76. Marc Stephens Is Insane

    There was a recent series published in The Toronto Star about a little 3-year old girl diagnosed with terminal brain cancer (the same kind Count Stan claims to treat). Her doctors gave her a year to live. Her mothers decided to celebrate every day, they took her to the farm as often as they could (she loved farm animals), they visited family, and they held birthday parties in advance every couple of weeks (to make up for all the birthday parties she’d miss later on). I’m choking up just typing this. They made the most of every day, didn’t subject the girl to any torture, she got to meet her new baby brother and spend a few months with him. She actually lived 16 months.

  77. WOW. Sorry I would do everything and anything possible. I didn’t know you had talked to every oncologist. What do you think of Suzanne Somers? This is so crazy to me how all you people are trying to convince one person (me) to join your cult. Do you not realize that the patients are home for their treatment? Do you not realize that their doctors are working together for the care of these patients? Oh, and you people changed my name. Thought you would be happy I went along with you on something. Oh and as one of your all knowing followers mentioned before that water is harmful to the body. Really? No wonder you are so against this if water is deadly to you. Eek! It’s raining, run for your lives.

  78. sebastianarmstrong

    No one said water was harnful you idiot, I pointed out that the drugs are harmful, as evidenced by the amount of water you have to drink (it’s in the gallons per day) to counter the damage it does. For someone who thinks they have looked into this you really know nothing at all.

    I can see why your looking into it didn’t help you (you can’t read properly).

    As for doctors are working with Dr B, actually a very alrge number of GP’s refuse to co-operate because they think his trial is BS. But hey, you’ve read up on this so you’d be aware of that.

    Either that or you have merely read the mis-information of the Pro Dr B lobby, and beleived every word of it, which is why skeptics highlighting the other side is important, the Pro lobby are lying to people. Now either everyone can sit back and let vulnerable people be sucked in by the fabrications of a snake oil salesman and his supporters, or they can do what little they can to truly inform (well at least those who aren’t dumb enough to read just one side of the story) people.

  79. Marc Stephens Is Insane

    Sorry I would do everything and anything possible.

    That’s what Burzynski takes advantage of.

    So how have we raised money for Count Stan? Will you ever answer or is it all a big lie?

    Yes, kids are at home (when they’re not in the emergency room) but they’re in hell. They don’t sleep because they have to urinate every hour, the pump they need for the ANPs is noisy and the display is bright, further disrupting their sleep. The side effects of the ANPs are horrible. They can’t eat, they suffer nausea and many reactions to the sodium. Several patients’ stories are public and they all say the same thing. The kids are tortured in the final months, then they die.

    Many local doctors will not work with Count Stan either. It’s a common story repeated by several patients. Very few doctors want to get involved with that nonsense.

    BTW, Josephine doesn’t, and can’t, change your user name. It’s an automated process based on what you typed in. If you ask one of your intelligent dogs to scroll up and look at your posting history, you’ll see at one point you started using SS instead of the full name you had been using previously. Josephine can confirm that. Do you ever admit you’re wrong about anything? You changed your name; not us.

    Re: Suzanne Somers: who cares what a washed-up, lying actress has to say? Did she go to medical school with Jenny McCarthy, Josh Duhamel and Rob Schneider (all actors who have f*cked up ideas about medicine)? Somers is wrong about bioidentical hormones, she lied about her own cancer and she wrote a book about a whole bunch of quacks Wow, I bet they use her book in medical schools.

  80. Marc Stephens Is Insane

    Sorry Sebastian, I didn’t mean to echo your post. I submitted mine before I saw yours. But the truth is, as you pointed out, it’s difficult for patients to find local doctors willing to work with them after they’ve been to Houston. Even M.D. Anderson, the best cancer hospital in the US (arguably?) and a hospital almost down the road from Stan’s, won’t accept patients who have been through Stan’s “treatment.”

  81. sArAhSmItH. Dang changed it again. I probably have like 20 email addresses if I am even typing a really one.

    and actually seems to be more harmful tot eh body than many forms of chemo, givne the amont of water that people have to drink. Oooo scary water.

    Yes, kids are at home (when they’re not in the emergency room) but they’re in hell. They don’t sleep because they have to urinate every hour, the pump they need for the ANPs is noisy and the display is bright, further disrupting their sleep. The side effects of the ANPs are horrible. They can’t eat, they suffer nausea and many reactions to the sodium. Several patients’ stories are public and they all say the same thing. The kids are tortured in the final months, then they die.—— cannot even hear pump and only lights up when you push buttons. it is only like 4×6 inches. i sleep with my tv on which is way bigger and loud. They eat just like everyone else. Peeing doesn’t make babies wake every hour or even the occasional 12 year old that wets the bed and doesn’t realize till morning. If a child get sick, guess what, you take them off the meds, they get better and you put them back on. Where if the child was given chemo the poison just stays in their system and you can’t stop it or take it out.

    Actually was SarahSmith, SS and Ss. Verify that. People were referring to me as SS. Yes, read that. I am currently looking at the line where I can write whatever name I want. Just helped me realize I am having a conversation with probably only one person.

    Re: Suzanne Somers…Good, I gave you someone new to bash. One could say the same about you and your crew. Oh wait, I did. Wow getting a little stressed are we? Yes there is another question you won’t answer because you are too embarrassed by the answer.

    Here’s you a blog. http://www.suzannesomers.com/Blog/post/Dateline.aspx

    Sorry you wouldn’t do anything for your child. I would take a bullet while you apparently would use them as a shield.

    Do your research and see how you raised the money. Prove to me how good you are at connecting the dots.

    http://www.americanchinesemedicineassociation.org/Most%20Cancer%20Patients%20Die%20of%20Chemotherapy.htm

  82. It's me again your good old friend Ss

    Oh, how dare an ER work with a child on this treatment. I was told no doctor in the country will help these patients. I don’t know how your ER works but around here you see a doctor when you go there.

  83. Lawrence | February 10, 2013 at 12:40 pm | Reply
    @SS – why don’t you answer the question?

    Blame him for calling me SS

  84. sebastianarmstrong

    SS

    I was going to ask if you are an idiot, however, no need, you clearly are. “and actually seems to be more harmful tot eh body than many forms of chemo, givne the amont of water that people have to drink. Oooo scary water.” It is not the water that is scary, it’s the sheer volume that people have to drink due to the side effects of the ANP’s that points to teh ANP’s being harmful NOT the water is harmful. You are a complete joke, and it is obvious now that you cannot understand even basic things, so that is why you cannot even begin to have a valid opinion on more complicated subjects such as Burzynski. You are ignorant and wilfully so.

  85. josephinejones | February 18, 2013 at 11:02 pm | Reply
    Although I don’t think anyone would take this accusation seriously, I just want to clarify that I haven’t been posting under any other name.

    josephinejones | February 18, 2013 at 11:07 pm |
    … and of course I haven’t changed any other names either.

    I would say that too. Don’t back up your buddies, verify that there are more than 2 people posting on this site.

    • If you think you’re the only person other than me posting here (a frankly ridiculous suggestion), I wonder why you persist.

      I’m not obliged to read your ramblings, to publish them or to reply to them. If you continue to bait me, I may stop giving you a platform.

  86. Now I am "Idiot". sS.

    So now I am idiot. You know nobody on this treatment. Nor do you know of anyone that has had the treatment. Otherwise you wouldn’t make completely false statements concerning the care of a patient. You have also proved that by your description of the pump. If what I say doesn’t matter then why respond? You are getting so flustered you are calling names. I make a totally horrific statement about your children and you respond with water isn’t what is bad. Is this really what type of people I am dealing with? Now do your response to make me look bad for saying that about your child. It’s a little late for that now. You showed your true colors. Did you not read my links? I think some nut job made those up to make your group look bad. So how much water should I not drink? I just want to be on the safe side.

  87. Now I am "Idiot". sS.

    I see I made your “headlines”. Thanks for pointing me out. Now everyone can see my comments that seem to really get your followers panties twisted. And you were able to twist my words like a lot of people have by saying I said you were the only one posting. I never mentioned you, Josephine, till you responded. I simply said anyone can put their name as whatever they want on every comment. And for all I know everyone commenting could be the same person. Never said it was you, but since you made a link to show everyone they can see the truth themselves.

  88. Truth hurts, sorry you can’t take it.

  89. Oh but you post that? I tell these people I made a serious accusation about these people’s treatment of their children and they respond with water’s not bad. I accept them calling me an idiot. Challenge them to make statements against me for saying that about their children after that accepted the statement I made. Show the operator that I never said you were the only poster just that people can change their name or email address with any comment

  90. sebastianarmstrong

    SS, I have no idea what statement you have supposedly made bout my children.
    With regard to ER doctors, they are there to provide emergency medicine, they will treat alcoholics, drug users etc in emergencies. That is nto workign with breweries and drug dealers, it is providing emergency care. Same with Dr B. However, that is of course diversion for the point, which again you have altered to suit your own purposes. If you have to keep distorting what has been said it shows that you are intellectually bankrupt and have no real counter arguments to the actual points offered. Of course this is going to be true, as you, like the rest of us have not been given the evidence by Dr B that his ANP’s actually do anything other than cause massive side effects, whilst making him money from vulnerable people. Skeptics highlight this, and people like yourself, despite having no way of countering the actual point raised distort what is being said and divert away from this central point. aiding Dr B in pushing his completely unproven trial drug onto people and charging for the trial. I wonder whether Dr B mentions in his infomred consent speech that 35 years of testing has not shown efficacy or safety?

  91. You can’t make such broad statements then back track when proven wrong.

    Apparently you have proven again you only read what you want to hear. Guess what, I scrolled up and there it was.

    And again you cannot back up the statements about what goes on during treatment. So, what is the procedure when the tumor is not in the brain.

    Oh and if you would read and know anything, patients are sometimes turned away because the treatment is not right for them. Obviously you would know that also happens with all other treatments. Why doesn’t your favorite doctor just keep them there and take all their money anyway. He is, to you, a money hound. Oh and now I have found a few patients that their insurance is paying for the treatments. Go attack every insurance company now. I am doing my homework why don’t you. Yes I look on more than your wacky buddies sites and links.

    I ask you to look further and you can’t or don’t want to see any different opinions. You all keep spouting off the same things and asking me why a doctor does or doesn’t do something. Like I said before, I, just as you, are nobodies in the medical field.

  92. sebastianarmstrong

    Which statement?

    You really are too imprecise for words.

    The insurance comapnies payign for “trreatments”, serioulsy are you on about he ANP’s or the conventional treatments that have been shown to have an effect, and could be provided more cheaply elsewhere? Also I have seen pharma companies help fund patients treatments whislt with Dr B, but no insurers, care to provide any details of what the insurers were actually funding……….I won’t wait for the answer, it’s goign to be no isn’t it.

    Comes ack to the central point, unproven unevidenced treatments being used by a doctor for personal profit from vulnerable people without any effect on cancer having been shown. I knwo you can’t counter this, but the deflection is seriously funny.

  93. From prior post “Sorry you wouldn’t do anything for your child. I would take a bullet while you apparently would use them as a shield.” The reply I got from that post was “waters not bad you idiot”. Oh my you told me.

    So now it is really too late to defend yourself because if I am to believe you read everything, you agree with me on the point

    Why should I help you figure out who to harass. There is no way on this earth I would ever give you anyone’s name or personal info about their care. So you are right the answer is NO. I would never sink to that level. You don’t know how to find stuff for yourself and have shown that by twice not reading, well make that three times, not seeing my referenced post. Since you couldn’t find that on this one page where three people are conversing how on earth do you expect to lead me to believe you know what you are talking about. You don’t even read everything.

    Do you even know not all patients at the clinic have cancerous tumors? I won’t give you people’s personal info, find it yourself. But I will educate you more if you need it.

    Do your research and see how skeptical people raised the money. Prove to me how good you are at connecting the dots. I am not going to tell you that either because it would lead you to someone people’s blog of care they receive. They don’t need anymore stress with your bunch harassing them.

    Do you people get paid to write on these blogs? I don’t, but it sure is fun.

  94. sebastianarmstrong

    You really are a moron, that was in reply to the allegation that some people had said warer was harmful.

    Sorry I refuse to belfive anyoen is a dumb as you seem to be, this must be deliberate misinterpretation. I read everything, you imprecisely waffle on about a point without saying which one.

    I am aware that not all patients use ANP’s, so what? Seriously we are talkign about Dr B and ANP’s yet you want to divert onto others. It’s a pathetic diversion tactic.

    I doubt there is any issue on which you could educate me on any value.

    Teh do your research blah blah blah about the rasing mone I have no idea what you are refering to, I have not mentoiedn that point even once, and have no interest in it, so why you are adressing me on the topic I do nto know, except again as a diversionary tactic.

    No I don’t get paid, and neither do I have any connection that I know of with anyone who does, I have no connection with any pharmnaceutical comapny or any rival of Dr B, I am an individual with no dog in this fight, but one who is incensed byt he exploitation of vulnerable people by Dr B to sell them an unapproved treatmetn that heh has had 35 years to prove but has failed to come up with ANY evidence that the ANP’s themselves do anything.

    Would I do anythign for my kid, absolutely, anything that was shown to work, and was not responsible for puching sodium limits throught he roof destroying any quality of life he may have had, just to make a Dr rich. Why woudl I put my kid through torutre just on the off chance that a treatment might prolong his suffering that torture, but has next to no chance of curing him? I wouldn’t, I would use the proven techniques,maybe you wouldprefer to torture your kid?

  95. Holy cow I make spelling errors a lot but wow. And calling names like moron and dumb. I must be dealing with a scholar.

    Like I said defending yourself a little too late.

    Go ahead and poison your child if that’s what you see fit. I personally want, if possible, to keep my kids away from something with the word POISON written on it.

    I am still talking about the doctor and his clinic and the meds. If you would have read anything you would see that. Maybe you have no idea because as proven before you know no one that has used or is on this treatment. If I can find the info surely you could too. It’s not hard. Go to http://www.google.com.

    Because of the serious spelling errors I really cannot understand a lot of the points you are trying to make. Therefore cannot respond. Or it’s just probably because I am a dumb moron.

    I would like to thank everyone who responds so I can rebut. If people are to google and do research they will see this blog and all the crazy accusations you make. They will also see things I have said and can take that into consideration. They will see how people twist what I say. And can only have a few bad things to say about the dr. The more they are repeated doesn’t make them true. But when you keep making me repeat things, that also gets read. The main reason I started on here is because of it being started off a page about a minor. I feel that it is wrong to stalk a baby. Apparently someone else did too since the link to the baby’s site has been removed to respect the patient. Yet some on here seem to know the babies name. Sounds fishy to me.

  96. sebastianarmstrong

    They can see you promoting a dr who in 35 years has not found any evidence whatsoever that the treatment he is selling at a massive cost is having any effect on canser at all. You have no answer on that point and it is clear you do not wish to actually consider this truth, the simple truth is you offer no evidence that the ANP’s have ever had an effect on cancer, and we can all see it has an effect on sodium levels and requires patients to drink gallons of water to avoid many symptoms. All of your prevarication alters this not one jot.

  97. @SS – you do realize that Dr. B “Old Stan” uses Chemo & lots of it, right? Even ANP (which he may be precluded from using anymore) is Chemo…don’t try to make the treatment something it isn’t – it is toxic and it does kill people, and we still don’t have any real proof that it works.

  98. @Sebastian – actually, drink gallons of water to keep from dying from elevated sodium levels….it is much worse than it sounds & a horrible way to die.

  99. Never said I wanted to poison my child just to make you happy. if that was my only option i would have to use it. if i could go the safer anp way that is what I would do. As I have said before, people can choose what they want to use. Nobody will force you to use this clinic or take anp. Keeping track of blood levels is a requirement while on lots of meds. If your levels get messed up all you have to do is stop till levels get better then start again. Where treatments you prefer you cannot stop what it is doing to your body. If you aren’t allowing yourself to believe it works then you also have to admit you can’t prove that it doesn’t. If there are no records you cannot say either way. You have “heard” that it didn’t work for some, while I have seen it work for some. I personally don’t know of anyone yet that it hasn’t worked for. (When I say know, I mean personally) I know of many that other options available didn’t work.

    Truth is you can’t say for sure it doesn’t work. It is non toxic. Again if you had been around the medicine you would know that. You would know that you would not have to freak out if it got on your hand. You would know, that unlike other treatments, your urine is not turned to poison by the medicine. Making you have to wear rubber gloves just to pee or change a patients diaper.

    Instead of harassing people with threats of death, why don’t you help them through the treatments by telling them you are worried for sodium levels and make sure you keep close track of their blood levels. Quit being so negative and mean about something you repeatedly keep saying you know nothing about. You spout out all these “facts” you believe to be true yet keep saying there is no documentation that you CAN find.

    If you are mad about the costs maybe you should talk with your doctors and see if they will treat you for anything for free. Remember I found on google people that their insurance was paying the bills. All did say they had to pay their deductible which is common with all insurance. And again before you ask, no I will not lead you to people that you can harass. If you want answers find those people yourself. Remember google. Just type in the little box, then it will take you to multiple pages with links. I know you love links. If you are truly looking and care you will type the right words and the right links will come up. But then again they could just be people trying to disprove you and made all that stuff up. You keep wanting me to pretty much tell you names. Again I will say I am not going to send you to people to harass.

  100. sebastianarmstrong

    SS
    You are either a liar or do not understand the word toxic, and have swallowed the Dr B line. The sodium levels begn elevated is a toxic effect. It is toxic. That is a fact. Unfortun\tely you say it isn’t without udnerstanding this.
    On the idea that peole cannot say it doe nto work, true. However I can categorically state there is no evidence available that the ANP treatment has had an effect on cancer. Why? Well, Dr B refuses to publish any. From that position ther are 2 options.
    1) Burzynski’s 35 years and 60+ trials has nto provided any, so he hasn’t published.
    2) The trials did proove it worked, but he chooses not to publish and thereby stop the treatment from becoming available to more people.

    The idea that he is prevented from publishing is frankly bollocks. He could publish in a low impact journal, and his studies woudl eb taken up. Of course a review of his work in the cancer letters showed that his studies are poorly designed, and uninterpretable. i.e. incapable of providing evidecne that it works due to the design of the trial. You woudl have thought in 35 years he woud have learnt how to do a trial that could show whether it worked or not, and that he woudl do so if he was actually tryignto prove it worked rather than just trying to keep flogging it to vulnerable people.

    I will not quit commenting on Dr B, it all boils down to his refusla to actually attemtp to show it works whilst continuing to sel it to vulnerable people who are mostly nearing the end of their lives. If you think it ok to do so whilst making little or no attempt to prove it actually works then you are endorsing snake oil sales.

    PS, you absolutely DO NOT know it works, despite knowing people who have taken it. You have NO evidence whatsoever that the ANP’s themselves did anything at all, please stop pretending that knowing someone who survived cancer whilst having ANP’s means the ANP’s did anything. No one has demonstrated a causal effect, that is why trials are structured as they are. Just believing Dr B or any of the patients in their unproven claims is a postition of willful ignorance, pushing people towards givign Dr B a small fortune for a completely unproven therapy is not a nice thing to do.

    PS regarding the insurance comapny paying for it, as far as I can tell you are lying, They do not pay for ANP’s. There is no case on the interne of this happening that i can find at all, you appear to be confused with insurance companies payign for conventioanl treatments and pharma companies giving relief on their medicicne costs. I do not name patients, or contact them, and I most certainly have NEVER harassed anyone. PLease stop making such allegations as reasons to notprovide your evidence to me, using the word “you”.

  101. Ok so are you saying the people that it worked for weren’t healed by the medicine but rather miracles. When they have done no other type of treatment. Talked to a person today who’s insurance is paying. Also they keep close watch on blood levels. They get blood draws several times a week. They have had to be taken off the medicine for illness do to illnesses like colds or flu more than dangerous sodium levels. If you keep track of your health while on the medicine, like you are suppose to, you can greatly help prevent any major side effects.

    As I have said there are many other medicines and illnesses you must keep track of these things the same way. When blood levels are messes up you simply unhook the pump. When levels are back to normal start again. From what I am understanding it takes only a day or two.

    You keep saying the same thing over and over. You never have any different info to back up your points. I state a different fact and you can only come up with the same rebuttle every time.

    You keep proving you have never been around the medicine or a patient. Where I can explain everything about the process, the care needed and equipment used.

    And I do know the skeptic group attacks patient. I have seen it. Telling the family this doctor is going to kill them. Really nice and shows how evil some people can be. The reason I keep saying I will not give names or links is because I have been asked to “prove it”. I will only show my proof by replying with educated answers. When I repeat myself I state “as I said before”. You could get away with copying and pasting you response every time.

    When I say “you” I am referring to all that are commenting on here. I am using its as a general term. If I was pointing out just one person I would reply to the individual comment. I am not trying to inform one certain person the info they need but all in general.

    Please respond with better info. We all know you are worried that you can’t read his patients study info. We also know you are freaked out about sodium levels. I also know that you have no idea how patients are billed and how insurance works.

  102. @SS – based on the patient chronologies detailed at:

    http://theotherburzynskipatientgroup.wordpress.com/

    It directly contradicts your claims about patient billing & insurance. In fact, I can find no patient information or case stories that say anything about ANPs (or other Dr. B treatments) being covered by insurance.

    Also, based on the track record we’ve seen thus far, it does seem that these patients are being given incorrect information regarding the status of their disease by the individuals at the clinic (we also seen numerous instances were Dr. B seems to be intimately involved in patient care and recommendations, even though he claimed to be completely aloof in his case with the Texas Medical Board).

    A lot of us here have down quite a bit of research into Dr. B’s clinic and the unfavorable outcomes that seem to typify the vast majority of those patients that utilize his “treatments.”

    You are the one that seems to not understand how medical research is performed today & how Dr. B has circumvented or ignored all of the basic tenants. Again, he could put all of this controversy to rest if he would just release his data (not patient records on individuals, but the actual results of all of those clinical trials he’s been running for the past 35 years).

    Don’t you find it just a little odd that Dr. B, above all other ethical researchers out there, refuses to publish anything amounting to results from this trials? How can you possibly claim that he is curing people when he won’t put anything in the public domain for scrutiny.

    If a drug company like Merck or Pfizer did the same thing, would you find that acceptable? What he is doing is saying, “Trust me, this works.” But he refuses to tell you why, how or show any proof that it does….again, you don’t find this odd?

    And maybe, just maybe, we’re freaked out by sodium levels because patients have died…..again, you don’t see a problem with that?

  103. Thinking your "SoSilly"

    Again you repeat yourself. So just refer to my prior post so I don’t have to do the same.

    Kinda odd that you send me to “the other” crap link again. I find my info in different ways than you. Not a biased blog that is also from WordPress.

    People go to this clinic after they have been diagnosed by usually a local doctor. Most people get many opinions on their treatment options. One i have Spoke to talked to 4 doctors that specialized in the field. You do not go to Burzynski and say “something is wrong, what is it and fix me”.

    If you knew anything you would know that usually a patient has at least 3 other doctors spread around the country read the MRI results. Patients don’t get info from only the clinic. All doctors involved, yes even those at St Jude look over the patients charts and results of tests. Patients aren’t even allowed to leave the clinic till it is confirmed their doctor at home will help with care. Usually it is very easy for your local doctors to want to be apart of your recovery from the problem weather it be cancer or non cancerous tumors.

    Of course you won’t find positive info you need on your link. You will also not get a chicken recipe on PETA’s site.

    We all know you want documentation of it helping people. Keep reading your one link and live by that. You remind me of a commercial where the lady meets a man in the Internet and believes he is a French model.

    Yes I see the problem of someone not staying on top of their care and getting their blood levels checked. One simple test will tell you all sorts of answers on what is going on with your body. That is why I suggest you tell people that you are concerned for on the treatment to please keep a close eye on the blood levels. It is sooooo easy to fix if done right.

    You want his data.

    You want his data.

    You want his data.

    You want his data.

    You want his data.
    You want to scrutinize him.

    (That should help with your next 5 posts and I made it a short simple statement because I KNOW YOUR COMPLAINT)

    I have told you many times how he can claim that it works. Please go meet someone in person who is on the treatment. You may change your mind.

  104. sebastianarmstrong

    SS

    Yes you keep replying weith absolutely no evidence what soever that the ANP’s have had a positive effect. I coudl not care less in this discussion what equipment is used, that has no bearing on effectiveness, it is a diversion. I could not care less in this dicussion about whether people stop treatrments for a while (although nice blaming patients/carers for not following complicated instructions, it is apparently thier fault if the levels rise to high levels rather than being the toxicity of the medicuation, yes that’s right IT IS TOXIC, despite you repeatedly saying it isn’t). that does not show effectiveness. NOTHING you have done has demostrated effectiveness, and ALL of what you have written since teh start is a distraction from that. You simply have nothing ot offer, and keep repeating the nothing that you have, and saying it shows you are right and everyone else is wron. You claim to be trying to inform everyone, well, you have no actual information pertinent to the efficacy of this treatment, but post other information (technically that woudl make it disinformation).

    SO do you actually have ANY information that relates directly to whether or not the ANP’s themselves have had any effect on cancer……if you do it woudl be amazing, because despite selling this to vulnerable people Dr B has not provided ANY. THAT is the crux of the matter, and one you continually obfuscate.

  105. Stating it is not toxic is not a distraction. Just as you saying it is. That could also be described as a distraction. I have actually got the medicine in my hand and didn’t have to call poison control. When people are trying to back up their argument with information that is incorrect is just more proof that you are wrong. Acting like you know everything then describing treatment processes wrong is a sign to me how much you really know. i have seen it works and is working. Just because I describe things different than you think they are doesn’t make me distracting you. Guess if you are easily distracted…. Stoping meds is not complicated at all. Sorry you would have difficulty not being on a medicine for a day.

    I am completely right. Until you have been around patients you know nothing but what you have read on your wacky link. Never said it is a patients fault if their bold levels are off, just simply that they are suppose to keep close track of the levels. And requested since you are so concerned, tell patients to keep close track of their levels. Not a hard task. My spouse is on meds for a totally different type of illness and he must keep track of his levels. When the doctors realized the meds were making an ulcer. Guess what he stopped the medicine and started a different. Same thing you can do on this medicine. Just because you put a few big words in your statement doesn’t make yours anymore true than mine.

    The link you try to get me to believe has the heading staring with “The Other”. Does not say “All patients”. Why would that be? I will tell you cause just like all meds some work for certain people some don’t.

    If you are saying you are trying to inform everyone with your “I”ve heard” statements you are wrong. When have you been around the medicine? When have you went to a patients home to talk with them and help them with whatever they need? When have you actually tried to support anyone with any major medical problem? I have seen emails sent to patients from one of your skeptics, Bob Blaskiewicz. Never would I want to be associated with him. He totally makes your skeptic group look like a bunch of bullies. I don’t know if he was turned down from treatment in some way or what his problem is but he is a terrible person. I usually don’t want to put people’s names out there but if he is going to, I guess I could call it, cyber bully patients he wants to be known. So there is another warning for patients, this man will attack you. It is almost a definite thing that is going to happen.

    And as you know I am not a peer of this doctor. He has no need to disclose anything to me. I can tell you are not a doctor either so why would he care to tell you anything either. I just see proof with my own eyes, in person. Guess what I have even hugged patients, gave them a kiss on the cheek and made sure they know if there is anything they ever need I will do whatever I can to help. As I have suggested before you should try to support people that have any type of illness. I know it will be a stretch for you but it will make you feel really good. I can tell that someone not believing your theories really upsets several of you. Try to make yourself feel good with being positive. Yes when I started on this blog I was pretty mad. I said stupid sorry about that. As I have said I just feel it was very wrong for a group of people to attack a baby.

    I can tell you all are getting upset during the conversation. I did start on here pretty mad but more recently have read posts where I have personally been called names on here. As you can see it doesnt bother me, heck i was owning the names and putting them in my title name. Some of these post I read I can just hear the person screaming and can see how frustrated somone with a difference of opinion upsets you all. Why so hostile if I am just an idiot that knows nothing?. I believe I know. I make valid points. If not you wouldn’t try to tell me how wrong I am with the same argument every time. I am personally glad I started on here, I made me reach out to patients more and them letting me spend time with them is very sweet.

    If you have any further questions about the care or equipment I will be happy to answer. If you have a different argument than people on your link it didn’t work for or sodium levels can be messed up it would be nice to discuss different points. Oh and I am sorry that you can’t read the doctors work progress. Meet someone and learn that way. If you just want to support people that have lost family members there are way more people that would like it than just burzynski patients. Hopefully you already do that. If so please send me to the links of those sites because I want to support people too.

  106. Your reference to “poison control” is fallacious. I can buy mercury, isopropanol, lead and numerous other toxic substances without informing anyone. Burzynski’s ANPs are indeed toxic. They have very high levels of sodium, and hypernatremia is a well known complication experienced by a very high proportion of patients, 65% in one study discussed by the FDA – and this is probably compounded by the fact that Burzynski has no idea how much water is needed to offset this effect, according to the evidence we have.

    As with everything in science, the burden of evidence lies with Burzynski to prove that his product is safe and effective, through the accepted mechanism of peer-reviewed publication in reliable journals, followed by independent replication. That is the only thing which will ever settle the issue. Do please ask him to pull his finger out – 61 trials registered is extraordinary for a single researcher, zero published is, I believe, unprecedented.

    • Whatever you want to call me or Ss

      Never said you can’t buy poison. Again another example of not reading what is wrote. Again I know the sodium problem you are concerned with and have explained numerous times how to manage it. I am also aware that a patient I have recently talked to does not have the main concern with sodium levels in the blood counts but something else. Again all meds effect people different. Different people have different situations. But I am sure you realize that.

      Again, I will tell you I do not talk to the doctor so I will not have the opportunity to tell him your request. I still am pretty sure he could care less any of my or your opinions. He is far to busy.

      Also you are another person who has not told your relationship with know patients. Just keep repeating what all your other buddies have said. I would like you to personally meet a patient or two. This whole blog has gotten me more involved with some and I am glad of that. I like having proof with my own eyes. I have not become more negative but more involved in helping people.

      • I read what you wrote, I pointed out the first of your fallacies. The idea that ANPs are “non-toxic” relies on using a definition of toxic specifically crafted to exclude the toxic effects of ANPS.

        I am not going to tell you about my relationship with patients and families because using patients as a human shield is despicable, as well as a classic bit of emotive bullshit.

        What matters is good quality evidence published in reliable sources. You know, like those 61 trials, if Burzynski had actually published any of them. Did the consent forms say “we have no intention of publishing this trial”?

  107. A note about theotherburzynskipatientgroup.wordpress.com. The reason that it is called the “other” is because the original patient group is designed in a way that is inherently misleading. Basically no matter how many people go to the clinic, untold thousands, they draw a circle around only a few dozen survivors. There could be (in theory, not fact) millions of people for whom the treatment failed, but you’d never know that by looking at that site. It’s what’s called the Texas Sharpshooter fallacy, drawing your bullseye around the bullet holes (in this cases, apparent “successes”). So, I wanted to give a fuller picture of the patients who go to the clinic. We have about 30 patient stories–in their own words– up right now and hundreds more ready to be written up. We can’t have patients write, obviously, because they are almost all dead, so we need editors to let their voices be heard. Also, we can put these stories in context. So, when a patient is told that worsening symptoms is a sign that they are getting better, we can let them know what that line has meant to other patients in the past (it’s not good) and that he has been giving that line for decades, we let readers decide whether or not he is knows what he is doing. (See the cases of Evan W, Justin B, Georgia M, Cody G, Leslie S, or Chase S. where patients report receiving this advice.) Also, we make sure to link back to patient pages so you can check our sources and read the stories without commentary. So we’re trying to be as forthcoming and transparent as possible about what we’re saying and where we are finding it.

    RJB

    • Whatever you want to call me or Ss

      Problem with this I have seen way too many times where people’s words get twisted to say whatever you want. It has happened to me several times in this one individual blog. So know that you have pointed out that your group actually writes the blog yourselves makes me even more “skeptical” of your intent. I have seen where this group has upset people very much by changing the content. Several on here told me I watched too many YouTube videos about this when I haven’t seen one. So know I have watched some and have seen the actual patient or their family complain how their info was misinterpreted. Maybe you should contact them and tell them how you are right about their lives.

      So you do know that saying patients can’t write this because they are nearly dead is very fishy. You can guarantee if anyone was to publish anything about my family, my family would be the author. Never a story teller. I would want the truth. The person who runs this blog said I was saying she was the only person commenting on here. Apparently had not read what I wrote or something I think I will keep to myself.

      I have said before the patient is monitored by their own personal doctors. Patients do not run across the country to the clinic to see the doctor every time something goes wrong. They go to their local doctors. I guess because the people I have talked to have several different doctors watching over them helps out a great deal. I have suggested if people are terminally ill they get many opinions and keep close track of their care.

      If you are the man that is threatening people with death shame on you. I am only assuming because i mention a Bob and all of the sudden a new person jumps in the conversation Named bob .You should never harass people the way you do. These people are going through difficult times and can use support. Maybe you should change your delivery methods because you do know the patients are all aware of your crudeness.

      For like the 20th time I will say not all meds work for everyone. If this medicine isn’t working for someone they simply stop and try something different. You have even harassed people that are getting good results. It shouldn’t take long to known if it works. I would say no more than 6 months into treatment. That would be like 2 MRIs. nobody i have talked to have ever heard of someone saying “since you are getting sicker thAt means its working”. Anyone that would even believe that needs to think a little and talk to a different doctor because their doctor obviously does not have time for them. Must be an example of people that are not able to get all the care they need while being treated. Sorry it didn’t apparently work for someone you know. If this person had tried something different would you harass all people that try the different method?

  108. SarahSmith,
    Can you share with us how you’re associated with the Burzynski Clinic?

    • Ha! I was told I would be asked that. I have to call the person that told me that right now. Just keeps proving to me the tactics people will use to try to discredit someone. If you would have read you would have seen I make 0 dollars a year. So i am totally free to give support where it is needed. I was lucky to marry a hard worker. My only true association with anyone is with patients of the clinic that I know personally. Should have read that too.

  109. It’s a fair question, isn’t it? You appear to be a strong advocate for the Burzynski Clinic, with personal relationships with multiple patients there, and you claim to have detailed knowledge of the treatment and clinic. I think it’s reasonable for us to wonder exactly how you’re associated and what kind of support you give. You defend Burzynski so vigorously, but can’t be bothered to tell us why you’re such an advocate? Why all the secrecy?

  110. Also, in the spirit of being honest about our intents and motives, I’m a cancer patient myself, so I have a huge personal reason for learning about cancer treatments.

  111. The only secret I am keeping is people’s names. Glad someone is realizing how much I know about the treatments. Proves I am looking like I am making more sence to you. I ask if anyone has been around patients and everyone ignores my question or says they don’t have to tell. Again proving my points. I support the patients I know who are going through this treatment just as I do people with other illnesses that need support. This site is just proving how wrong people really think the treatment works. My support for this clinic has been explained several times by me since Feb 8th. I have more to say than the same stuff over and over. Please take time to help anyone you can in your area going through any type of terrible illness. I am ashamed there are people in the world who would treat people and threaten people the way I have heard and seen this group do. I will always back up someone who I feel is attacked for no other reason but a hate group has pointed them out. I am seeing this work. This whole page was started about a baby that had no other options.

    I am glad that you have concurred your cancer and hope it never ever comes back. But I challenge you to think about how you would feel if a group of people were attacking you for whatever option you chose to use.

    All I am trying to get people to do is be postive for seriously ill patients. Saying he won’t show records or blood levels get messed up is no reason to harass innocent families who are going through one of the most difficult times in their life. I am sure you really appreciated all the positive support you received. Make these blogs saying your opinions, it is a free country. Just stop attacking patients personally. Unlike your group believes these patients know what all the risks are and what to watch for.

  112. @SS – where have we here attacked patients? Please show the post or comment that does so…..because I’m attacking the doctor for not showing that his treatment is actually effective or going through the regulatory process to PROVE that it is safe.

    And lastly, I’m attacking the doctor because until he can actually prove that his treatment works, he’s giving people false hope and charging hundreds of thousands of dollars (and we’ve got a growing list of his patients that are now dead). That’s what I’m about – I feel for his patients, because they deserve better.

    • Skeptic group people have done the attacking. If you are part of the group you are part of the bad behavior.

      • That is a reversal of the facts. Skeptics have asked for evidence. The response has been to attack critics. Needless to say, some of the critics have replied in kind, but the root of the problem is, and always has been, the behaviour of the Burzynski clinic and its shills. They are not interested in civilised debate, so they are not in much of a position to complain when the debate they insist on having anyway, is not always entirely civilised.

      • Please stop repeating the claim that skeptics have been attacking patients or their families, unless you can provide evidence that this is the case.

  113. As I mentioned, I know people who have been treated and cured by this doctor, in the past and the many currently on the treatment doing very well! Everyone is welcome to their own opinion, it’s America! But for all the full time “haters” (who are probably paid to raise suspicions against Dr. Burzysnki) trying to get the FDA to suspend his work or close his clinic….has it crossed your mind what will happen to those who are doing well and their cancer is shrinking or not spreading because of this treatment? Their lifesaving treatment will be stopped and delayed because of your nonsense. Sometimes patients have to stop treatment briefly for various reasons and often their tumors start to grow again. This doctor and his cure may not work for everyone, but there are many variants of cancer, and for some, this absolutely is saving their lives. What about them? If you want to put your effort to good use, urge the FDA to monitor our cosmetic and food industry…..now that is where companies are making BILLIONS in profit while putting known carcinogens in “beauty” products. Many of these “ingredients” are banned in Europe, but our lovely FDA does not regulate them. So many other things and causes you could spend your time on…

  114. Sarah, I don’t see where you’ve mentioned your role, other than “supporting patients.”

    In any case, I don’t think anyone is “attacking” patients, but certainly I’m not! Dr. Burzynski and his “treatment” is the target of our frustration, not his patients. He’s had more than enough time to show whether his treatment works, and yet he still refuses to do so. Why is that?

    Being “positive for seriously ill people” is well and good, but it’s not a substitute for legitimate cancer treatment.

    • OMG. I said I don’t have a role. Only supporting people. Please READ stuff. When your skeptic group threatens patients and their families it is attacking and harassing. Tell you group to leave them alone and only use blog crap like this. You complaining about treatments not working helps nobody in any way. Go to people in person and show support. That is what I do.

      • This is just to warn you that if you continue to repeat the same points and to make false claims against skeptics (or indeed anyone), I will prevent you from making further comments.

  115. If Burzynski’s treatment is all it’s claimed to be, has the thought crossed your mind that the patients who are doing well could continue to have the treatment and lots more patients could benefit as well? Plus it would likely be covered under insurance, so families may not be bankrupted in the process of treatment? Plus Dr. Burzynski would be rich and famous beyond belief! What’s to lose by publishing the results?

  116. SS and/or WithMyOwnEyes, where’d you go?

  117. Truly not interested in debating further about this Dr. If you have cancer or your child has cancer, and you do not want to go to this doctor, then just don’t go. For those that I know personally……they are eternally grateful for the option because it saved their child’s life. Same thing for current patients who are responding very well. NCI lists clincial results. I really hope all the drama that groups like this are stirring up does not interrupt care for his current patients.

  118. Does NCI list results of Burzynski’s clinical trials? Actually, I *do* have cancer, so my life could well depend on the treatment I choose, so I’d love to see evidence that somebody, ANYbody (!) has a new, unique, safe, and efficacious cancer treatment! It’s not a debate I’m looking for. Just publication of trial outcomes. Why is that so difficult? I really hope all the pre-release advertisement drama that the Burzynski shills are stirring up does not endanger any more cancer patients, who deserve to know the truth about their treatment options.

    • Meet people on the treatment in person. That is how I see with my own eyes.

      • I contacted a patent in person (oor rather, her parents); they were cruelly misledby Slippery Stan. Fortunately, Orac had some sound advice and they were able to get competent diagnostic information. Sadly this did not leave them long to prepare for the death of their cherished little girl but they were at least in possession of the full facts about the progress of her disease, rather than the deception they received from Burzynski.

  119. @Curious – SS / Sarah/ Whatever she wants to call herself now, reminds me of people that claim that faith healing works, because they’ve seen it with their own eyes….despite the fact that no actual evidence exists that it actually works or that it is has never been tested or they continue to make the claims even after it has been proven that the people “healed” weren’t actually sick or didn’t actually get better….

    See, SS, over the past hundred years or so, we’ve come to realize that you just can’t take things on “faith” you should really provide actual evidence that something works. It is quite possible that there have been patients that have responded to ANPs at Dr. B’s clinic – but we’ll never know, because unlike every other Cancer Research institution, which happily publish both positive and negative results of clinical trials (that’s where we learn what works and what doesn’t, so positive treatments can be utilized by oncologists across the globe to treat tens of thousands of patients or more), Burnzynski has patently refused to publish any of his results – either positive or negative (besides Youtube videos and online testimonials).

    And you are worried that the FDA is going to shut Stan down? Well, actually it is his own fault – any patients that are “forced to stop treatment” because Stan is shut down (and currently, it looks like ANPs are off the table anyway for any new patients), can blame the clinic itself for not providing any real evidence to the outside world, that the hundreds of thousands of dollars they routinely charge patients, is for a treatment that has any evidence that it actually works.

    It is the FDA’s job to make sure that the medicines that we take are actually safe and effective – if Stan had actually proven that his work, we wouldn’t be having this conversation and we’d be ecstatic that a new and revolutionary Cancer treatment had been found. Instead, he’s used loopholes, opened up numerous clinical trials (and if you feel he doesn’t need to publish, then why open up all those trials – 70+ at last count, if he never intended to publish his results – could he be using them as a loophole to continue to charge patients without having to prove his treatment works?), and relied on people like you to continue to champion his cause, without really having to do much of anything at all.

    And asking if you worked at the clinic – well, I believe you’ve accused opponents of Dr. B to be paid “Pharma Shills” or the like, so if you can’t turn that around and look at your own conflicts (because of your emotional attachment to the clinic – you don’t seem to be able to look at the other side of the issue or consider legitimate questions about the operations there, treatment effectiveness or the various red flags that exist that don’t happen at legitimate medical facilities).

    All anyone wants is for these Cancer patients to actually have a chance – to be provided with medical care and treatments that are safe, effective, and done at a price that doesn’t bankrupt the families – unfortunately, Stan has not given us any reason in the world to think that his “revolutionary” treatment is any of those things. It seems like “emotional” support is the only thing these patients receive – emotional support to continue their treatments through Dr. B – regardless of the outcomes, so the cash keeps flowing, all the way to the inevitable end.

    • It’s what ever you want to call me. Remember there was also moron and idiot.

      Thanks for putting words in my mouth again. Anyone looking into this treatment please read what I have actually wrote not what that say I feel or said because it is usually changed to fit what these people want to argue about.

      Never even heard of the word pharma shills. Sorry wrong person or just your putting words in my mouth again. See the treatment working and seen it has worked on others.

      People don’t go bankrupt. So the initial visit is 30000 I know of other doctors that charge 200000 up front for other forms of cancer treatments. Insurance is paying. That is what it is for.

      I am not concerned your group will shut him down. Again like me we are nobodies in the medical field. Just people that should try to help people with whatever decision they make. Sorry you don’t want people to be able to make their own decision. As said before nobody must use this clinic. You choose what you want. I am saying you cannot post on here anymore. Are you going to listen. NO. Because you can do whatever you want and I am not going to attack you for actually posting on here.

  120. @WithMyOwnEyes: The fallacy in your argument is obvious. You are working on the assumption that the observed results are due to ANPs, not to random variations or the chemo that Burzynski also uses. In order to justify the substantial additional costs, let alone the ridiculous hyperbole with which ANPs are promoted, there must be proper independently verified evidence of this differential effect.

    That means Burzynski has to publish full results from his trials. 61 trials by a single researcher in a single area is extremely unusual. 61 trials with not a single published result is, I believe, unprecedented.

    There are many ways that people, including doctors, can fool themselves into thinking something works even though it doesn’t. You have only to look at the continued popularity of homeopathy and the hysterical disbelief which the scientific consensus provokes among its adherents.

    Cherry-picking single results from scattered places serves only to highlight the absence of what should be the core of Burzynski’s case, published results from his own clinical trials.

    Can you point out a single accepted, legitimate therapy which has been brought to market via propaganda films, unpublished trials, strident shills, and against a backdrop of near-unanimous consensus that there is no credible evidence the treatment works? Do feel free to cite any such case, I am genuinely interested in finding out.

  121. @ChapmanCentral – It has also been noted that the new Clinic PR Director is now claiming that the “Vast Majority” of patients treated at the clinic aren’t part of the clinical trials….if this is the case, then those patients could not be treated with ANPs – since the FDA forbid the use of ANPs outside of the clinical trials…..so what the hell has Stan been treating the “Vast Majority” of his patients with?

  122. sebastianarmstrong

    I note that supporters keep saying the “trials” have come to an end. Does this mean Dr B will be publishing data for ALL of the trials, or cherry picking?

  123. I’ve been away from home and have been finding it very difficult to keep up with these comments.

    There are, however, a few points I’d like to make:

    Nobody is “attacking patients”, “attacking a baby” or harrassing patients or parents. Not me, not Bob, not Keir (who wrote the post above). Nobody. The decision to take down the link to the parents’ post was made jointly by Keir and myself to protect patient anonymity and was not as a result of a complaint from anyone.

    Keir’s post does not concern decisions made by patients or parents to go to the Burzynski Clinic. At the risk of reiterating the whole post, it is reporting the news that (according to a patient blog) it seems that the Clinic are undergoing an FDA audit and are being prevented from taking on new patients (for ANP treatment). The patient blog suggested that the reason for this was that a child went into a coma and had fatal sodium levels. As Keir points out, hypernatraemia is a well known and well established side effect of ANP treatment (which was reported by the FDA decades ago). It is worrying that this seems to be being played down by Burzynski (you just need to make sure you drink plenty of water seems to be the advice given).

    This treatment has been used for decades on thousands of patients, many of whom were treated as part of FDA approved clinical trials. There is no reliable evidence that it is safe or effective. If someone got better while they were on the treatment, this does not mean they got better *because* of the treatment. The dearth of published evidence would suggest they did not.

    • I have 3 emails that have been forwarded to me that “Bob” was very cruel to patients. Horrible. I could prove it by posting his email address on here but i wont stoop to that level. I was able find what I think was the blog this whole post started from and it was concerning a baby. To me if you post any type of info concerning a child you should make sure you no body can find ways to see the info. I can see if you wanted to attack an adult. They can fight back but a baby? How stressed this family has to be and I hope they never see this.

      Again how are we suppose to believe this patient was actually a patient and not one of the crazy sites made up? Even if this was a patients blog how are we to be sure where they got the info. And we are suppose to believe the person making these statements has all the correct info. I doubt the clinic would call all patients and update them with all other patients info. If that is the only place you can find the info maybe it is untrue.

      I have also seen someone comment on here a patients name that happens to be a baby. If that family had not been attacked yet someone just opened the door for that and even told people where to find pics. (That would of been a few post I wouldn’t let be posted.)

      Watching blood levels closely is also “advice”. All patients get all the info before being treated. I am communicating with some patients telling them what is said on here that the clinic supposedly doesn’t inform patients of and they already know. It is all part of what they went over before they even started the treatments. How can a group of people that have never been thru the treatment tell people the process? They guy that says he writes that “the other” group page has changed my words for his benefit so many times I would never believe anything thing he wrote. Especially concerning medical care.

      • Posting someone’s email address would of course prove nothing. Also, if the address is not already public then it would be wrong of you to make it so and your comment would therefore be redacted or deleted.

        May I also warn you that making false statements about someone in order to discredit them is potentially libellous, and since I am publishing your comments, I could be held responsible.

        I’m leaving your comment unedited for the time being as I think it unlikely anyone would take you seriously – but I warn you that I may have to delete or edit it (or any similar comments) in future.

        If you are as close to patients and the clinic as you are implying then you probably know that the patient blog is genuine. If anyone doubts this they are welcome to contact me privately for further details.

  124. @SS – since we already know where to find Bob, why don’t you post the emails you say are “attacking patients?”

    Also, if you clicked on the links provided at “The Other Burzinski Patient Group” you would see exactly where the information is coming from, in the patient’s or their families on words.

    If you won’t take primary sources, then how are we to believe anything that is posted by Ole Stan either?

    Again, I ask you why Dr. Burzynski is allowed to operate differently than any other legitimate Cancer Researcher in the world?

    • Once again I don’t want to post the emails because the children’s names are used in the email. If you feel it is okay for people to know and direct people to your children pleas post the names of your children, nieces nephews and and other minors. Also please let us know and give us links where to find pics of them.

      • Perhaps you should be contacting the parents who run the patient blogs bigging up Slippery Stan’s Snake-Oil. It would not be necessary to promote the other side of the story if Slippery Stan gave the full picture himself.

        He doesn’t.

  125. When have I ever attacked children? I really want to know.

    • Sorry mister but I have three emails. Like I said leave children out of it and quit threatening families that the doctor will kill the children. People are using the web for support and to keep family and friends updated and you take advantage of that. They all know you will find a way to get at them. Your threats to the family mean nothing. They are not going to stop doing something that is working because you don’t believe. I will tell you also, if you feel it is fine to contact people about children please let us know the children in your life’s names, where we can find them and how to get ahold of them.

  126. I am so going to sue you, JJ! :LOL!

    • I go through life expecting someone to threaten to sue me at any moment, but I honestly never expected it from you!

      I do think it’s important though to remind people that I have to draw a line somewhere. I also think some people need to bear in mind that certain online behaviour is unacceptable and could have consequences.

      • Reminds me of Mr. Treason on Wikipedia: “I will sue you in a court of law in Trenton, New Jersey”.

      • Like I have said as long as you keep the stuff on your blogs then whatever , but I really think allowing links to minors and listing names is terrible. Just opens up more people to harass these families and believe me they already know of your group and how you feel.

      • You will notice that I never list names. I do everything that I can to scrub names from my posts. My thought is that I don’t want someone who enters a patient’s name into Google will end up with my page in the results. That’s deliberate. Now, I source things. The links are real links so you can see I am not making things up, and anything put up on the web is there because the families or patient already put them there. So show me where I threatened people, or shut up.

  127. It’s always the one you don’t see coming. :)

    I think that recently a lot of blogs are realizing that they are responsible for the tone and timbre of their comments. It will only raise the level of discourse.

  128. @SS – you seemed to have learned quite a bit from your time at Dr. B’s clinic….make a bunch of unsupported accusations & or assertions of facts without evidence & expect us to just believe you?

    The families themselves are putting their personal information out for the whole world to see, some would say encouraged by the Clinic as a means of advertising their services without breaking the FDA ban on false marketing of ANPs…..again, if you have “proof” there are plenty of ways to redact personal information (even Adobe will allow you to do it) to give some sort of credence to your claims.

    Again, you’ve learned your lessons from Dr. B very well – make a bunch of allegations (or claims of success) without providing a single shred of proof….Dr. B would be very proud of how well you’ve swallowed his story, hook, line and sinker – he should be paying you.

    • Sorry I have said numerous times I haven’t been to the clinic ever. But I am very honored that you are pointing out the fact that I do know a lot more than you thought about treatments and patients.

  129. @Ss – Nobody is allowing links to minors. Nobody is listing names. Nobody is harrassing or threatening families. I now notice that in an earlier statement, you claimed Bob has threatened people with death. That is untrue and utterly unacceptable. Your more recent comment claims that Bob had threatened that the doctor would kill children. That would not be a threat from Bob – he is not responsible for Dr Burzynski’s actions.

    It would be perfectly true to say that antineoplastons carry side effects that could be fatal and, as the post above mentions, there is genuine concern that the clinic are not making patients adequately aware of risk. The fault here lies with the Burzynski Clinic, not with those people who point out their failings.

    I think I should also point out that asking us to list the names of our children and to explain where you can get hold of them is uncalled for, unacceptable and potentially intimidating.

  130. Ok so if nobody has named names or posted links, what is it that you consider the post that marcstephensisinsane wrote on Feb 12th at 4:38 and another at 4:42? You did respond to them. I was saying put your child’s name on here to prove a point and you helped me with that. I am sure these people didn’t approve of mention of their child’s name on here or a link to find pics just as you don’t want your child’s name on here. There is just certain lines that shouldn’t be crossed especially when it comes to children. Links like that give the bob guy access to info that he uses to contact families. Yes these families may have blogs that are on the web and the world can see, but it can be very hard to find these and most people do what they can to make these private.

    As I have said before all meds have side effects. These patients don’t live at the clinic. I am not saying it is the patients fault if they become too ill. These people need support from as many people as possible just as anyone else going through illness. I do really like that if a person does become ill from the meds they just simply stop taking it and can either start again when better or if it is not working can move on to something different. No patients that I have talked to were forced to stay on the meds or told that them getting worse would be a sign of getting better.

    I have met patients personally. Not by working at the clinic or even ever being there. I will help them in anyway just as I do for people with other illnesses whatever treatments they choose.

  131. @SS – yes, none of the patients told you that, because as we have seen, the patients that were told they were getting better, when in fact they were not, are dead….the dead don’t talk.

    Let’s see what the result of the FDA audit is – hopefully we will finally get some real evidence as to whether or not this “treatment” actually works.

    • SarahSmith. My point has been made.

      Since these are alive and happy I will tell them you told them that. For one of them the MRI is first read at local hospital and sent to burzynski, st Jude, and St. Louis. Since all come back with same positive decrease results they are going to stick with it. I believe I have said this like 10 times. You don’t just work with burzynski . Your personal doctor is a major person involved in your care. There are actually 4 doctors spread around the country helping with the health of one patient. I have no idea where you get that burzynski is the only doctor giving info. I really wish you could meet a current patient and be able to understand how everything works. Now of course if you get all your info from people that didn’t survive you are only getting an upset families point of view you are missing a lot of info and getting a lot of bad talk. Sorry I am making you so mad. It’s just that I look at both sides. People are writing wrong info on this blog about treatment and i just want to help educate. Again not all meds work for everyone.

      Anyone interested in this treatment please read this entire blog. Shows many perfect examples of who to watch for. I have explained several times a little about the treatment. There are patients using this medicine in my town and are seeing good results. Not “getting worse means getting better” as these people would like you to think. Never have they told me they have talked to a real patient in person. Meet some people for yourself before you start. You will see they are not laying in a bed rotting away. They are up walking around, laughing, and enjoying life. There are negative sites for all forms of treatment. This is just one that happens to be against this type.

  132. @SS – did you just blame the families for passing along information after their family members died? Certainly sounds like you did…..

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