I was "suspended" by the list owner of the acor list, so I asked to be permanently removed. I thought I would get more emails of support, but I have only had a few. He took great offense about my postings of Botivia. I was not trying to get anyone to sent the man their credit card numbers. I have never had any other nutraceutical company offer a discount to me a a cancer patient. Drug companies like Celgene seem to charge whatever they feel they can get away with. And the man who runs the company truly impressed me with both his knowledge and his graciousness. And he never made a single claim, yet he would like to put his products in testing. Also, I was unsure how to address him, because I did not know if he had a PhD, but he told me that Dr. should be reserved for medical doctors in his opinions. I am not sure, but I think he may have a PhD. There has been a distribution problem with his products, but I think he can work this out. And, geez, he gets them made in Singapore. Does not the list owner realize that pharmaeceutical companies get most of their drugs made or at least a lot of them in foreign countries? Also, I have to tell you Mike Katz. the list owner, was particularly offended because in a direct email to him I questioned the results of any web survey. He was co-author of a study about Zometa in the NEJM, which he was proud of. But he did not like to be questioned. James Betz, on the other hand, would like to have a web study of his products, and he fully realizes it would not be acceptable in medical journals. He will also be putting his products in clinicla testing, and this may include against a myeloma cell line, at least in the test tube.
Really I do not have the time to fight Lon Nessler who wants to send me constant emails telling me how logical Lon is and how illogical Dr. Berenson's views are on transplants. Lon just had a transplat.
And I do not have time to battle Larry Edelstein, who I do consider a friend about the NTx or CTX tests or about the merits of vitamin D.
And although I respect Brad Rathkopf very much and have a deep regard for the man, he is waiting for a drug that is never going to be available. I do believe in 20 years we might have something, and in the next 10 years things that help to prevent the mm from coming back and also some type of drugs from the cancer-immune system research.
We have better things available to us now, I think, with some of the things David knows about, psychoneuroimmunology that Arnold Mass posted about (please get him to be a member of this group), vitamin D, resveratrol, curcumin, maybe artemisinin, and I do not know what else.
But most patients want to be given a pill. That is not going to happen for us.
I truly believe that with your help, and with the help I can offer you, we may all live a very long time with this disease, even if we cannot get any type of remission. It may not be true for everyone, but I think it is true for a lot of us.
The acor list was taking far too much of my time. I did not mind posting, but I have no interest in battling anyone anymore.
Alex Maas
Alex, I think most Acor folks do not know about your forced departure. I am hoping to rectify that (if my post doesn't get censored). I think many will be really teed off. As things stand, there have only been a handful of posts since you left. Most unusual. Yet all the list members know is that you are on a one-week suspension.
Just thought I would mention that. You asked me not to leave Acor because of this, so for now I will not (even though I had already written my "resignation" e-mail stating my reasons for leaving). I agree with all your points, Margaret, Florence, Italy
Alex, Margaret and all-
As we all have read, there is a great deal of support out there for you Alex. Mike Katz has gotten to the point of censoring the acor list. He warned me several weeks ago when I posted that the IMF
1) does good work
2) is biased as they take money from drug cos-
Others have commented that they have been blasted for posting on non-conventional issues.
As far as I can tell, the mma and b-m.org list do not censor. I may disagree with posts, do not want direct selling, no swearing, but will never censor.
As was mentioned, we are all grown-up, responsible people here. We can all make decisions for ourselves.
Alex please continue to research and post- others as well. I believe that we will all benefit from this exchange.
David
Alex: First, I wanted you to know that I tried to defend you once and was quickly chastised by some woman. In fact, I asked to be removed from "the list" -- although I think it will be temporary because there is a lot of information to be learned there.
Secondly, If someone told you that "Dr." should be reserved for "M.D.", then he/she is most assuredly not a Ph.D. (or M.D.) Those with Ph.D.'s (Doctor of Philosophy) have an earned title just like M.D.'s (Doctor of Medicine). In fact, Ph.D.'s were the first doctors. In most medical environments (i.e., H. Lee Moffitt Cancer Center), Ph.D's and M.D.'s are both referred to as "doctors". In med schools, Ph.D.'s often teach students to become medical doctors. Some M.D.'s also have Ph.D.'s So if an individual tries to diminish a Ph.D., then I guarantee he or she has not done all the work required to get one -- which is basically contributing new discoveries to the body of knowledge in a particular discipline. I know I spent just as many hours in university as most M.D.s.
Hope that helps. S. A. Stokes, Ph.D.
Sandra,
I call everyone who has a PhD Dr. So-and-So, normally, as I do believe most of them have earned it. Some do not like this and prefer another title. I do not know about Mr. Betz.
At any rate, this was not meant as any type of insult or whatever to someone who has earned a PhD. However, I can tell you, when my former neighbor, an accupunturist who had a "PhD" she earned from a correpondence course (before the internet), call herself a "doctor" and a "physician" I did not like it.
my view has always been to try these compounds and find out if they alter the disease.
often the print is the best bit.
if something works i don't care about where its come from.
there seems to be so little about effective "alt" remedies for myeloma that quite a lot of
myeloma people say has altered their disease significantly.
margaret's case is interesting.....but does high dose curcumin crack it for someone
with more aggressive disease.
remember hans yaeger had a go at a lot of things,when his count swere down a bit.....nothing worked for him http://www.yeagers.info/h...
but he kept looking all the .
i think mike jumped the gun on this recent "scandal" but i wish alex had not left the list.
i suppose he can always relist later if he feels like it.
more importantly, let's find out if james betz is as good at getting the product to your doorstep as he is at sounding ok on the phone.
joe,who is merely feeling jaded on dex and is going to sleep early.
I'm a social worker and I used to get mental health meds from the manufacturers. Contact the manufacturer of the med (any med) and ask for a scholarship. They will send paperwork which you fill out (the lower the income the less you pay). They send 3 months at a time once you're in the system- many of these have to be applied for on a yearly basis so keep up with the date of expiration and start filling out paperwork again. You will have to fill out paperwork for each med you take. It's work but if you need the meds it's worth itthe most I know of anyone paying was $20.
I sent somewhat of a strong letter to the List regarding Mike's post. I have gotten at least seven letters of support of my outrage and only one supporting Mike. I do believe you were spending too much time posting. It's spring and we need to get out, get as much exercise and fresh air as we can.
I can't go into detail right now about the letters I've received.
Although you personally may not have received many letters of support, the support is out there I assure you. I think I would do the same thing you did if I were in your shoes, that is, resign from the List.
I wrote to one person and said I don't want to use any more of my energy thinking about other people's personality failings. I have enough controlling my own.
Best of luck to you. I know we'll be hearing from you on this list. But it is spring. Each day is precious.
Shirley SFL (Finksolow)
I was posting too much, but the problem was I was getting too many emails everyday. Many of these were trying to get me to explain or defend the views of Dr. Berenson. Others were taking me to task for various things because they are outside conventional thought. I was trying to explain my views so I would not get so many emails, but this just furthered the problem.
Believe me, I have a million other things to do besides post. I have a long email about this. I have been trying to find fincancing for a medical student in her last year at a private medical school in Brazil for one thing. I met her trying to find a cheaper source of thalidomide for those who cannot even afford the co-pays on their insurance plans. I am taking five classes. I have a dog that I walk twice a day for an hour. I have a 13-year-old son who was out in the middle of May. I also set up a plan for someone else who took me for a lot of money when I was on psychiatric drugs post-thalidomide to pay me back by getting her to finish a job training program.
And many other things. Believe me, I am relieved not to be part of the acor list. Forgive Mike for whatever bad things he had to say about me. Instead focus on what we can do to fight our myeloma.
I truly believe that with the connection of certain things outside of of conventional medicina there may be a possiblity of preventing cancer for a huge percentage of people, erasing it in many people who have it, and at least reducing the amount of drugs others have to take to fight cancer.
I received the Bioforte 7 days after I ordered it. I sent two emails that were very critical of the company to Mr. Betz, and he responded immediately. If anyone want to see his response, I would be happy to email it to him or her. You will be very pleased, except that he seems a little paranoid that the critical emails somehow emanated from Longevinex. I post all of this on the MMA list, but I do not know if it will make it throught. I know nothing about long posts on that list.
I have a Ph.D. (in Romance Langs and Lits, not, sigh, in Biology, which would be most helpful to me right now!), but I just like to be called Margaret. When I taught at university, I told my students to call me Margaret, not Professor Lilienthal. Nor would I want to be addressed as Doctor, that is for sure. And I live in a country that still has a very formal address system, similar to the French Tu-Vous. Here it's Tu-Lei (but also Tu-Voi in Southern Italy). Titles still count a lot here. I have to call my hematologist "Professoressa" not "Dottoressa," otherwise she gets mad. ;-) At any rate, I prefer being informal. Just another (long, sorry) thought on academic credentials! Margaret, Florence, Italy
The information about artemisinin is quite interesting. We were contemplating putting this in our anti-cancer formula that is still under development. The ingredients would be resveratrol, curcumin, one other ingredient which I can not identify now, and artemisinin. Artemisinin is also a potent anti-malaria compound. I do not know if biaxin potentiates resveratrol but will research this.
David, I couldn't agree more with your wise comments on censorship. Margaret, Florence, Italy
http://www.mercola.com/to...
Good video explaination of our big Pharma discussion
Portlandrose-
If the acor list is conservative in their view, this video is liberal- I happen to agree with the basic ideas though I think that it would drive many on the acor list crazy.
(external link) Good video explaination of our big Pharma discussion
David
Someone sent me the acor list rules, including a link. What I cannot quite seem to understand is why it is okay to talk about the products and the prices of drugs from Celgene and Millennium but it is not allowed to talk about any supplement company or their prices. Why do they just not say exactly this instead?
Also, I am not sure of this, but I looked back on Sean Diggins' posts from about the last two years I have on my computer, and he never once talked about his mm, nor about any of his loved ones having mm. And he is NOT a healthcare professional. The rules say such a person can ONLY post if every time he posts anything, he asks the listowner about it.
So he is allowed to break the rules?
In an email to me he says he is an "expert witness" in certain medical cases, but he says he has no science degree. And he proudly says he has been a member of "healthfraud" or something like this for over 10 years. The man has made a career out of this, it seems.
The last thing in the world I want to do is do deal with mm. And I certainly derive no benefit from anything I post. And I certainly woudl like to think there is a pill a doctor could give me to make my mm go away, especially with no side effects. Unfortunately, it does not exist.
sean diggins' father has mm alex.
he lives in the same city as me,although i have never met him.....he is something of a musician too.
he is quite relentlessly hyper-rational - which has its value but you are not going to get
a knight's move solution to treating mm from him.
joe
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