I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Medical Breakthroughs => Topic started by: Everlasting on February 11, 2010, 07:31:08 AM
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Hello, CCStan
Thank you for your post in which you ask about the availability of stem cell therapy. Victor (my partner and an individual with end stage kidney function) will be leaving in 10 days for McAllen, Texas.......we will stay there for about four days to make sure there are no procedure complications. We will be crossing the US and Mexico border at McAllen and attend the clinic where the procedure is done in Neuvo Progresso (Mexico). The distance between these to is a 5 minute walk between communities.
To my knowledge there is no location where this can be done in the US or Canada. When I ask why this is so the answer depends upon who you are asking. The clinic we have been connecting with is that of the International Stem Cell Institute and we are very pleased with the support they have been giving from the moment we touched basis with them. The rate is 10 thousand dollars and in the case of my brother and Victor local communities have come together to financial support this medical tourism. The same procedures in Germany are 40 thousand, India 100 thousand and I am unsure what the fee is in Japan.
Stem cells from the placenta of a newborn is the source of the material required. I have insistent that the stem cells I received (for neurological issues) are that of a child born by cesearan section.
Funding for the needed research is hard to come by --- one would expect that the Goliaths in this field would be pharmaceuticals however that is not the case. I expect that the answer as to why they are not supporting this science in it's infancy lies within the boundaries of the medications individuals who are unwell are required to purchase.
I do get some satisfaction knowing that the stem cell implantation in the clinic we will attend has been using stem cell therapy for 19 years....a great statistic for skeptics and researches. I have not, to date, found a testimoney that indicates any ill effects from the procedure.
I can hardly wait to return from this joruney to report that stem cells have re-energized my partner's failing kidneys. The filtering sysstem in the kidneys that so not function will not be revived -- instead, the stem cell provides the benefit of significantly increasing the function of existing filters.
Because the therapy addresses filters that have some function it is important for an individual in ESKD to act ASAP - while there maybe some function lieft.
My partner has been reassured that his kidney function will rise to 50% function.
The entire procedure from start to completion lasts 40 minutes --- can you imagine putting forth 40 minutes of your time and by doing so have the potential to not need a transplant or dialysis.
I would be neglectful to say that this process is not for everyone !
I was informed yesterday that Canada now has three stem cell storage centers --- this news translates to the fact that stem cell therapy is not just a fade and for that matter we can breath a little easier knowing that stem cell therapy will be available to the children of our generation if not sooner.
Will keep you posted.
Everlasting
EDITED: Merged multiple topics and threads. May result in some duplication as no posts were deleted.
okarol/admin
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Hello, Everlasting,
do you know of any published results on this stem-cell-therapy in medical journals?
I have heard that the latest information by respective researchers is,
that the stem-cells should only be taken from the individual having the treatment,
as the risk is very great, taking stem-cells from another human being.
This does not refer to any kidney-treatment, I believe
it only is concerned with certain types of cancer.
Have you got any more up-to-date-information?
Thanks Kristina.
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One of the therapies for the cancer I have is stem cell therapy. They used to take the stem cells from someone else, but now have worked out a way to take the stem cells from your own body. This has a much higher chance of sucess. They blast you with chemotherapy and kill all the cells, then put the saved opnes back in to start again. That's all I know about it. And I know they won't do it with me cos of the kidney failure - becasue they don't want to rick making me that sick. What Everlasting and her husband are doing is different again.
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Kristina, if you do an Internet search for "cord blood" you will see what research has been done in the US with placental cells. I do not have a university account anymore, but some journal articles are freely available over the Internet. As I mentioned in another of Everlasting's threads, I have banked cord blood for both of my children, having spent roughly $5000 to date on it, and gave my reasoning in the other thread. What Hanify is talking about is the type of stem cell therapy I am getting - adult stem cells.
I researched the use of banked cord blood recently when I was told that two individuals who underwent a similar (but not identical) procedure to the one I am about to receive ended up with early stages of leukemia. What I discovered is that cord blood has been used to treat this leukemia, but is actually inferior to a perfect match adult stem cell transplant. The success rate from the articles I read said that about 50% of leukemia patients went into remission with a perfectly matched bone marrow or stem cell transplant, while a non-matched stem cell transplant and cord blood had about the same success rate at 30%.
Here is a list of what current, US cord blood banking centers say can be treated (not cured) with cord blood. This is not the bank I used. http://www.cordblood.com/cord_blood_banking_with_cbr/banking/diseases_treated.asp?fbid=uO1WuWjBlbD
Please note that kidney failure is not on the list.
There is absolutely no guarantee - I am sorry to be blunt, but if this doctor guaranteed any success, he is lying.
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Thank you for that detailed and honest reply, Hanify and cariad.
It supports the findings I have so far read &
I wish you the very best of luck, if you decide on any treatment.
Best wishes from Kristina. :grouphug;
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I enter this post on behalf of my partner who experiences end stage renal failure. Approx. two weeks ago we traveled from the Atlantic coast of Canada (Nova Scotia) to the community of McAllen, Texas which is situated at the Mexico border. At that location (Neuvo Progresso) we attended a stem cell clinic for the purpose of receiving stem cells --- a process that took all of 45 minutes.
We now wait to see the results of the function increase and will have levels tested in about 2 weeks time for the good news.
This message is sent from Florida -- a location that we felt we could best rest and allow the stem cells to reach their maximum potential.
If anyone has an interest in this treatment choice .... we would be more than happy to share the experience.
In Wellness - Everlasting
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Hello, Folks: My partner and I have made the pilgrimage (sp ?) to the border town of McAllen , Texas for the purpose of receiving stem cells at a clinic across the border at McAllen - Neuvo Progresso. It is a clinic that has been providing this choice of treatment for the past 19 years.
The actual procedure took all of 45 minutes and there was lots of time for a pre-procedure consultation and a post-procedure consultation.
We now await for the stem cells to become active in the system. A kidney function level determination will be done in the weeks ahead.
If a loved one is comtemplating this treatment of choice.....we would be most willing to pass on some tips to make the process as easy as possible.
In Wellness --- Everlasting
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Interesting! Best wishes and, yes, I would like to hear how everything goes.
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I hope it works. Good luck and keep us posted.
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Sounds like a scam to me. Hope you don't get ripped off, or worse, ripped apart. If you could reverse renal failure with stem cells it would be all over the news by now not done in some back door alley in Mexico. But good luck to you anyway, you look like you need it.
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Sure do hope it works for you. Please keep us posted. I for one am very interested in hearing more about this.
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I will be watching with interest so please do post ! There is a Professor over here called Robert Winston who is working on stem cell treatments (he was one of the top ones that invented IVF and look at the results for that !) Also one of the senior nurses on my unit has a friend that is being treated for cancer using stem cell therapy and says all is looking good! I hope you do get a breakthrough , no matter how small it will be a start ! :2thumbsup;
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I am sure hoping that this works out for you all. Keep us posted. :grouphug;
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I hope everything works out for you both. :cuddle;
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will be wonderful if this works for you. Wishing you all the best...
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I wish you well. Tell us how it goes.
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Everlasting, fingers, legs all crossed for you, I so wish that this will work for you, please let us know.
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I too wish you all the best of luck, what a break through if it works. :bestwishes;
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Hello My Friends: My partner (with End Stage Renal Failure) and I are back home after a trip to the McAllen, Texas/Mexico border for stem cell treatment. The wait now begins and up to this point my partner has every reason to expect positive outcomes in terms of kidney function. We will keep you posted as the numbers come in.
I do not wish to speak for my partner on this one as it is such an incredible personal issue. I will however share with you that the benefits the stem cells provided me increase by the day. I was treated for a neurological condition and the effect on my balance was idebilitating. This is now clearing. I don't know if it will enable me to put aside my wheelchair however hope is high! Additionally, two diagnoses were discovered in the diagnostic process of measuring internal energy fields.
To my astonishment I was found to have a partially blocked vertebral artery at the level of the neck and a heart condition by the name of "cardiomyopathy". I have every reason to think these can be treated. The stem cells have already made a difference in the cardiomyopathy --- a condition my identical twin died from about five years ago and the reason I was given was that it was caused by "heart failure". For the past five years I have been haunted by her death as our history has always been iin keeping with the fact that we were idenical twins --- her fate will not be my experience as it has been caught in time.
Everlasting.
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Please keep us updated on the progress. Best Wishes to you both. :)
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Yes, please do keep us posted, this is interesting. And, of course, Good Luck to both of you. :clap;
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My Friends: We have been there, did it, done it !!!
Sorry for the long silence. We have been to Texas/Mexico for stem cell therapy and wanted a little time before we announced the outcome. I AM SO, SO PLEASED TO ANNOUNCE THAT MY PARTNER'S EXPERIENCE HAS BEEN A VERY POSITIVE ONE. HIS KIDNEY FUNCTION LEVEL IS ON THE RISE AND HE HAS BEEN TOLD HE CAN EXPECT EVEN MORE INPROVEMENT OVER THE NEXT FEW MONTHS !!!
If anyone is interested in going this route -- I would be happy to pass on some tips. I would urge you to give it some serious thought despite not knowing if and how long improvements will last. Even if you get a year out of the benefits - I would think it worthwhile.
Will keep you posted as the months pass.
As one can imagine the greatest obstacle to this approach is the costs. In the community which we live there are several organizations that will help organize and promote fundraisers for the purpose of this therapy. Once again if this is your barrier to wellness -- I would be happy to pass on any information or experiences we have encountered.
All of you have been very much on our minds and it has been hard to know just what to do in announcing the stem cell outcome. We would be agast if what we experienced would end up being false hope for you. It was "hope" that kept us on the path. What ever you do always remember the benefits are unique to each individual.
The reason for stem cell therapy for myself was not kidney related but for neurological problems --- my experience to any benefits has been much less that of my partner's who is now being told that he can expect his function to rise to 50%
CELEBRATE WITH US and SERIOUSLY CONSIDER THIS NEW SCIENCE IN IT'S INFANCY --- there are risks and no guarantees !!
IN WELLNESS - EVERLASTING
EDITED: Merged the two topics - Rerun, Moderator
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My Dear Friends: sorry for the long silence however we did not want to rush into making the announcement that my partner's stem cell therapy worked and his kidney function numbers continue to be very positive. He has been informed that there is time left from the stem cells to provide even further progress.
I still find it hard to believe that it is all behind us now. One physician stated that my partner will not have a need for dialysis or transplant during his life time (he is 68 years young).
Our one fear in making this announcement is that it has the potential to provide you with false hope should you consider going this route. Every individual responds in his own way and it is not known how long it will last however we are encouraged with the words from the physican who spoke to the fact that my partner will not require dialysis or transplant in his life time ---- he is 68 years young and good years ahead of him.
About 4 days after the procedure he did come down with symptoms of the flu and we wonder that it was indeed not the flu but a "foreign body reaction" from the stem cells i.e. the symptoms could have well been a stem cell rejection issue.....that too has past and now we can move ahead in every aspect of our lives together.
Please know that I/we are most willing to provide you with answers to any questions you might have on this subject and our experience.
In Wellness
Everlasting - join our CELEBRATION and accept any help we can pass on to you
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What do stem cells do to improve the function of failing kidneys?
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My Dear Friends: It is our pleasure to make the announcement that my partner's stem cell therapy was a great success !! We have remained silent up to this point as we would be devastated if we were to find ourselves passing on false hope. In actual fact "hope" is what enabled us to make this leap.
I have additional information on the General Discussion Board that might interest you.
As I have mentioned, stem cell therapy is not for everyone. It's benefits are unique to each individual. To sum up our excitement a statement by one physician summed up our reason to celebrate. He stated that my partner will not require dialysis or transplant in his lifetime (he is 68 years young at this point). The physician's statement brought us back to reality and painted the landscape that we can hope for. My partner received the stem cells on 3 March 2010 and began noticing an increase in energy about 7 - 10 days post procedure. He has since been informed that there will be on-going benefits over the next two months. The goal is to gain enough function to bring his function level up to 50%
Should you be considering this therapy we would be most willing to share any information we have. The greatest deterent is the cost......in this corner of the planet the kind, friendly, compassionate and generous communities pull together and send "their own" out of the province for whatever treatment they require.
Please know that the encouragement and support you have provided pre procedure truly made a significant difference in our strength to achieve this therapy.
Lovingly - Everlasting (Melanie)
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I am glad this appears to have helped your partner though the overall practice does concern me on several levels.
What I would like to know is what exactly was your partner's kidney failure from? For example I can't see how stem cells could help something like FSGS (scaring) or PKD. Perhaps it is only useful for specific situations.
You mention cost but have not been specific. How much did this foray to Mexico cost for the procedure? Didn't it just take a couple of hours? How long did you (he) have to stay close to the clinc for observation or any other work?
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Happy for his success.
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If it works ..dont knock it! Unless someone tries these new advances we will never know if it works or not . I was talking to one of the nurses on my renal unit and her friend has cancer and is trying stem cell therapy and she says her results are looking very good ! and that she doesnt think this treatment is as far away as we think for mainstream use!
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Melanie, I am so pleased to hear that things have worked out for you with the stem cell operation. I bet you are over the moon. God is good.
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This is wonderful news. I am so happy for you and your partner.
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If this is for real, can you please provide a link to the medical clinic in which the treatment occurred so that I may conduct my own research along with more information on what kind of kidney disease was treated and how stem cells helped the malfunctioning kidneys to heal.
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I am thrilled for your friend. please send links ... what form of KD does your friend have?
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It looks like 3 strands from this person about this have been merged. Good plan on the part of moderators.
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This is the 3rd post about this today. What is up with that? Is this some sort of "robo posting"?
Is there any legitimacy at all to this? I have posted on all three, this included. If stem cell therapy really exists, sign me up, quick!
(by the way, my hospital offers stem cell therapy too. But you have to be in a study, and you have to have a transplant. Results of the study are published for all to see. Where are the results of this study?).
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There are no medical clinics in Mexico doing renal stem cell work. This is a scam.
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THere are no CLinics in Mexico doing stem cell research or therapy. This is a scam.
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THere are no CLinics in Mexico doing stem cell research or therapy. This is a scam.
I doubt very much this is a scam! As a scam usually leads to some sort of benefit for the poster eg ; advertising or trying to get money and as they are not trying to do either ..i dont see why you should think its a scam as it would benefit nobody !
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I'm not commenting here in any way on the intentions of Everlasting, and I'd like to celebrate anything in which people may find hope and comfort. However, there are very many ways in which desperate people are "scammed" daily by unscrupulous "healers" who offer expensive but essentially useless treatments. Clinics in Mexico have been at the center of this type of controversy for a number of years and in the long run if a person isn't harmed, other than perhaps by spending a lot of money on hope, then so what, it's a personal decision.
My understanding of Wallyz post is not that Everlasting is scamming anyone but rather that the clinic in question is scamming them. It's always a fine balance between skepticism and hope, and innocent people are routinely roped into paying for hope and encouraged to promote it too.
P.S. I still spend too much money on anti-aging hope in a bottle even though I KNOW that I will NOT look ten years younger in six easy weeks.
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I've actually been to a seminar on adult stem cell therapy. My sister was invited and there were "Refreshments Provided" so I went with her! ;D
The basic theory makes sense. When an egg is fertilized and splits there are all the DNA instructions for a human body. Brain, eyes, kidneys, heart, skin, etc. So they are basically just trying to turn on the instructions for regeneration of that part of the body gone bad.
They had some people who gave testimonials. This one guy could barley get up and walk to the podium. I whispered to my sister "he better take a few more pills". But, he told that six weeks prior he was bed ridden from a car accident with no promise to walk again.
I've been to religious healings too and seen the same thing. But, those of you who don't believe in God may find hope in science.
I hope Everlasting's experience is positive for years to come. Keep us posted.
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Sunny: Thank you for your comments on my efficiency in posting our announcement re stem cell therapy. My role on this site is that of:
1) an advocate (thus the the posting on the adovcate board)
2) another is posted on medical break throughts and justly so and
3) finally under General Discussion.
Not in my wildest dreams have I thought that a member would scan each board catagory i.e. why would an individual with kidney failure take from a reduced energy source to do so. From the goodness of my heart I gave thought to all members and by posting on the appropriate catagories I would reach those who might be interested in what our successes have been.
You suggest that I should be concerned of multiposting and state you wonder what the gain is. I should explain that my involvement in this site surrounds my partner's needs and his kidney failure gave us reason to turn to stem cells. If you think I am participating in this stem cell issue for a gain - I TAKE IT PERSONALLY AND AS A TREMENDOUS INSULT. You have no right to critize at this level as I too received stem cells and in my case the outcome has not been as rosy as my partner's results. Personally, my disease is lethal and progressive and now that I have reached out to all options I must sit and wait for the iinevitabile
If you have so much energy to sit and read all IHD postings we will pass on the name of the Clinic in which my partner and I received the stem cells so that you can do the research.....it would not be to our advantage to gather my research outcomes and forward them to you as they would likely not be received as valid information. I should remind you that you are addressing your comments to a medical researcher and a chemist
I wish you well in your quest and by all means connect with the Internatioinal Stem Cell Institute (on Internet). I will leave this with you as I am too fatigued to continue on this issue.
Everlasting
This is the 3rd post about this today. What is up with that? Is this some sort of "robo posting"?
Is there any legitimacy at all to this? I have posted on all three, this included. If stem cell therapy really exists, sign me up, quick!
(by the way, my hospital offers stem cell therapy too. But you have to be in a study, and you have to have a transplant. Results of the study are published for all to see. Where are the results of this study?).
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My Friends: I am sorry our words of celebration has, by several members, been received as threatening, mis-belief and name calling.
Before another word I do wish to thank those who have responded in the spirit in which our announcement was presented. Sunny - you are out of the water and give me great reason to reserve my energy and terminate my participation on this site.
My basic goodness has gone wrong and energy wasted!
I will be giving my participation a little more thought and assure those who have questions of the stem cell process that we experienced.
Thank you Rerun for merging my messages.
Everlasting (timeline ? - read my response to Sunny under the catagory Medical Breakthroughs
Morein: a special thank y ou for your support regarding my intent.
Billybags: your words are heart-warming
Kickstart: I can always could on you --- much appreciated
Everlasting (?)
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Thank you for your reply Everlast.
In fact, I do have plenty of time to spend scouring the internet. I am on disability and the internet is my connection when my energy is low.
The reason I am so interested is because my kidney failure is due to kidney scarring. If stem cells can help to regenerate scarred tissue, I am all ears. Maybe you can e-mail information so I can look into this.
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???
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Most readers scan the new topics since they were on last, so yes all 3 would show up. I merged the two but will leave this one alone. So, yes please stick to the two active threads that you have started for us to read.
Thank you,
Rerun, Moderator
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I have not had a chance to see that thread but everyone here has something to offer IHD. Everyone has an opinion whether it coincides with each other or not. That is OK do not take it personal, I would rather have honesty in viewpoints. As long as it doesn't result in personal attacks it is ok.
Sluff/Admin
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Thank you for your post Everlast. I hope your partner never needs dialysis. As with any medical procedure check with your Doctor on your own unique situation but if stem cell therapy works, then why not.
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yeah look I'm not trying to knock it per se. All we have though are some person's comments on an internet board.
I would be the first person to cheer if ANYONE is relieved of the need for dialysis and improved kidney function!!! I'd be cheering in the aisles for them and frankly, I'd want to know more and consider it for myself if it was practical. I'd rather try stem cell therapy than buying a kidney on the black market, but I do have concerns over how the stem cells are gathered in some parts - and I'd want to use my own adult stem cells rather than those harvested from a foetus or other source.
We've read over the past six or so months Everlasting's claims and stories about going to this clinic over the boarder, but never seen any names of the clinic, or anything rather than general rather than specific information regarding the nature of the kidney failure in question, what the unit is, what exactly they did, where the stem cells came from, what followups have been required, etc etc.
I would like to see more concrete details before I jump up and down about this.
Let's face it, if great many people were being helped in this manner(I am NOT going to say cured) then you would think the practice would be more widespread, and documented in medical journals and so on.
I want to see that kind of thing.
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I agree 100% Richard. But.. if this was a new breakthrough what an awesome thing it would be.
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My Dear Friends: My emotions of disappointment, feeling discredited, with loss of dignity, of good will and respect leave me with little energy to continue on this site. From the very beginning of my participation I have questioned the negativity of the name of the site however the messages I received in response to questions did over-ride any reason to feel that the site had any intent or capacity to be negative. Unfortunately this seems to be far from the truth.
For the disbelievers and for those who do not have the capacity to share in a situation whereby a member has found resolution to his life-threatening kidney issues is most unfortunate. What happened to the compassion and good will?
i am tired of trying to lift the spirit of others and have provided a success story ---- one that I had hoped others would embrace and even possibly follow suit.
For the disbelievers I would suggest you test the waters by contacting the clinic in which my partner received the stem cells. You will find answers to your questions from a very approachable individual by the name of Chuck Sheldon, Vice President of Patient Advocacy at Chuck@istemcelli.com or from an administrative resource person Rita Alexander at Rita@istemcelli.com. These individuals are employees of the International Stem Cell Institute, 1050 E. Piedmont Road, Suite E 179, Marietta, Georgia 30062.
I trust you will find answers to your questions or concerns.
" For those who have addressed the cost issue, my response is that "yes" it is EXPENSIVE and I suggest you ask personnel at the Institute regarding their fee schedule. i will pass on the fact that it is $40,000. in Germany, $100,000 in China, and $30,000 to $40,000 "off shore".
Everlasting
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My Dear Everlasting, this site is a place for anyone to discuss and have an opinion. That has been done. I hope you find hope in your new discovery in stem cell research. The guy that came on here telling us we could all be saved by taking a 2 hour sauna everyday was also met with much skepticism. He may have found the truth, but we have not heard anything. Please don't be mad. IHD has much negativity. Those on dialysis understand. I love this site because we help people on dialysis or about to start dialysis. I wish I would have had this site in 1987 when I found myself in the hospital hooked up to a machine that I knew nothing about. Your stem cell therapy may well be the cure, but you cannot shove it down people's throat. Just state your truth and leave it.
I really do hope you found the cure. :cheer:
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(http://img695.imageshack.us/img695/5828/spamff.jpg)
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Everlasting ..im sorry you are leaving but i can understand why. Im not sure why people disbelieve you , maybe your lack of information ? The sauna guy , well it was easy to disbelieve him , but stem cell therapy is going on , even the nurses on my unit are talking about its advances. Like everything it will probably only work on certain people ,with certain types of kidney failure. Wishing you the best , shame you wont be reporting back with any news good or bad though. KS.
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Everlasting, One of the great things about this site is we are all free to voice our opinion. Please understand that there are many here that are extremely ill and have tried everything in the book. And money is always a huge concern. I am hoping for the day when stem cell research will be the source of growing new organs. I couldn't dream of going to Mexico for this treatment, because of money. And my kidneys are scarred and scarring doesn't regenerate. I think many here are very happy that you and your husband have found something that is working for you. Maybe you will be a part of making history in the stem cell area. If you leave, we will never how it worked or for how long. This site was created so each person can post without censership. Post all you want about stem cells. Please keep it in one thread so we know where to look for it. And yes, there are a lot of us who do read all the sections and almost every thread. We are all looking for support and for hope. Again, if you leave, we won't know what the outcome of your treatments are longterm. Wishing you well.
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I admit I have missed some of the recent posts this week, so I went through and read them all. It looks to me like most people were supportive, some skeptical and some downright disbelieving. I am sorry you didn't get the reception you had hoped for, but I would not lump the whole forum together as negative. The subjects you have brought up are thought provoking and lead to good discussions, and every time we post something we open ourselves up to getting opinions. And, you knew the treatments may be considered controversial so people are going to have questions, concerns and even criticism. I hope you will keep coming back. It can take at least a year to truly measure how treatments affect cells, and I hope you get the results you expected for Victor. I also hope you find the answers and help you need for your own health issues. Best of luck to you both.
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I am a believer in stem cell research and I know it is still being tested here in the US. I belong to the Miami project which is working for a cure for paralysis. I am glad the stem cells are working for your partner. if I had 100,ooo I would take my brother overseas in a heartbeat, both for his paralysis and for kidney failure, but we are waiting for the cure to come home here in the USA. I believe once they unlock how to use your own stem cells they will be able to cure cancers, paralysis, organ failure..the list goes on. I pray your partner's cure is permanent. God bless you! :angel;
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I am a believer in stem cell research and I know it is still being tested here in the US. I belong to the Miami project which is working for a cure for paralysis. I am glad the stem cells are working for your partner. if I had 100,ooo I would take my brother overseas in a heartbeat, both for his paralysis and for kidney failure, but we are waiting for the cure to come home here in the USA. I believe once they unlock how to use your own stem cells they will be able to cure cancers, paralysis, organ failure..the list goes on. I pray your partner's cure is permanent. God bless you! :angel;
But then they would not make as much money on us. :thumbup;
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Everlasting:
If there were a true stem-cell cure for kidney failure, those docs would be publishing it in every nephrology journal, and presenting their results at every nephrology conference. They would become famous, just like other docs who made medical breakthroughs.
Instead, these docs are content to practice quietly in some clinic in Mexico, working alone, not publishing their results in peer-reviewed journals, not even holding a press conference to announce their results to the world media. That raises my suspicions. Because that's how medical quacks typically behave.
I'll wait till this stem-cell "breakthrough" hits the medical press. If and when that does, I'll be hearing about it on CNN, and from my own nephrologist who keeps up with the latest medical advances.
Till then, I think I'll pass.
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I too have read through the various threads on this. Yes, I am on the sceptical side, and I asked for more information - both on the nature of the procedure and the nature of Everlasting's husband's kidney failure(something which she never elaborated on that I saw - and I don't know why not). I don't think that is asking too much. Like Paris, I have FSGS(scaring) so I don't think any number of stem cells would help me, but I am excited by the possibilities for the future - specially in growing new organs out of our own adult stem cells - which I think is the ultimate way to go in this regard - there'd be no rejection issues and no need for steroids, horrible medication etc. I really want this to happen, but fear it will not be in my lifetime. Still the possibilities are exciting.
I honestly don't know why Everlasting is chosing to depart like this. Yes, people have been sceptical like me, and some others disbelieving, but I haven't seen any personal attacks or requests/comments that seemed totally unreasonable. As others have said IHD is a place that allows for many views and opinions, and as long as they are presented in a polite and non personal way then why not? That's what it's all about. Just because someone else has a differing opinion doesn't mean yours(or theirs) is right or wrong - it's just another viewpoint.
All of us are happy if your(everlasting)'s husband has received positive benefits from this procedure - absolutely - that is a wonderful outcome. Sometimes we do hear of things like this, and it is very positive. However those of us who really WANT treatments like this to be successful for others would like more information.
In a way, choosing to leave the site rather than continue to advocate for a treatment option that has apparently helped your husband, and possibly you, just lessens the credibility of your own story in my view - specially when you decided to leave without answering(that I saw, anyway) some basic questions, like the nature of your husband's kidney failure.
Just my two cents, and definitely posted without any moderator hat on.
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There is a very small world that is doing stem cell work and the preponderance is adult stem cells. Most fetal work stopped when researchers in Israel in 2004-2005found a very high rate of tumors in patients that had been treated in Russia, at the time the most advanced fetal stem cell program. My brother, who works in this field, tells me that there is no one in Mexico doing fetal stem cell work, because the source of fetal stem cells is aborted fetuses, and in every state in Mexico, it is illegal to perform abortions.
There are no commercial stem cell centers in Germany. There are no legal fetal stem cell centers in China. They have been focused on Adult stem cells since the early 2000's, because they understand that fetal stem cells require an extensive immunosuppression regime, and they are looking for inexpensive, effective ways to deal with disease, because they do not have profit seeking sector, as their medical research is primarily Government funded and directed.
All this is to say, this is a scam, please do not contact these people. IF they link to a peer reviewed study detailing the program and demonstrating results, I will gladly listen to them. But they won't becasue there are no such studies.
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There is a very small world that is doing stem cell work and the preponderance is adult stem cells. Most fetal work stopped when researchers in Israel in 2004-2005found a very high rate of tumors in patients that had been treated in Russia, at the time the most advanced fetal stem cell program. My brother, who works in this field, tells me that there is no one in Mexico doing fetal stem cell work, because the source of fetal stem cells is aborted fetuses, and in every state in Mexico, it is illegal to perform abortions.
Well if you look at the website of the company apparently involved in this procedure they claim to be using fetal stem cells (http://www.istemcelli.com/):
The placenta tissue administered by the physician is pre-tested extensively and is confirmed to be sterile prior to being administered to a patient. A Certified Laboratory is used to perform tissue testing, exceeding the strict standards International Law requires. All testing uses Good Tissue Manufacturing (GTM) practices. A few of the tests include HIV in three modalities, Hepatitis B and C, Toxoplasmosis, Cytomegalovirus, Syphilis, and Rubella. Due to the stringent testing of the placenta used in treatment and as a result of our patients' experiences we are proud to state that this method of Placenta Stem Cell Therapy is effective, non-toxic and we confidently believe risk free for patients of all ages including infants and children. And our experience proves the only outcome from Placenta Stem Cell Therapy is a positive one.
As you say there are no studies published in independent journals and the whole thing just has a feeling of "too good to be true" about it - and you know the old adage - "If it seems too good to be true, it probably is"
Again I am not trying to dispute the veracity of the claims by Everlasting - congratulations to her and her husband for taking this step and apparently achieving the desired result. I do, however, have some concerns and issues with the procedure, where and how the stem cells are obtained, and just how useful the treatment is.
Heck kidney disease is not even mentioned on their website under "responsive conditions" !
So yes, I remain a skeptic
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There is nothing I would like more than to find a stem cell therapy that could regenerate my malfunctioning kidneys.
I have asked my various medical physicians about this many times to no avail. There is no treatment any of my physicians reccommend including that involving taking my own stem cells or placenta stem cells to regenerate my scarred kidneys. There are legitimate studies going on, but the outcomes are unproven as yet and the methods not widely accepted. practitioners set up clinics outside the U.S. to circumvent U.S. guidelines. "60 Minutes" just did a news segment last night titled "21st Century Snake Oil" exposing fraudulent stem cell therapy conducted in Mexico for ALS patients. These clinics are willing to provide stem cell therapy for wide ranging chronic illness in which stem cells are claimed to be the answer. The 60 Minutes episode is very enlightening.
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This is the best article I have found on stem cells curing actual kidney disease.
Home Stem Cell Articles
Stem Cell Transplant Succeeds in Curing Kidney Failure in Rats
Mainichi Daily News
21 June 2005
A research team led by the University of Tokyo has succeeded in curing renal failure in rats by transplanting somatic stem cells of kidneys from healthy rats.
The team announced the results of their research in the June 20 issue of a U.S. science magazine, "Journal of Cell Biology."
Somatic stem cells are a type of cell in an organ that can multiply and develop into a variety of other cells of that specific organ. Such cells cannot, however, transform into cells of other organs.
Experts have expressed hope that the method can be applied to cure renal failure in humans, noting that human kidneys have similar somatic stem cells.
"It's been confirmed that somatic stem cells in kidneys are capable of not only creating new cells but also restoring damaged organs. We may be able to develop drugs aimed at (activating) somatic stem cells," said University of Tokyo Associate Prof. Keiichi Hishikawa, a member of the research team.
The research team has identified the gene of somatic stem cells in rat kidneys, and confirmed that such cells exist only in parts of rat kidneys called stroma. The team has also discovered that somatic stem cells in kidneys are capable of developing into blood vessels and renal tubules.
In the experiment, the team transplanted 10,000 kidney somatic stem cells into the ailing kidney of each laboratory rat with renal failure.
Blood tests conducted on the rats seven days later found that their kidney functions had returned to normal.
Researchers said they believe that the transplanted somatic stem cells restored the damaged kidney cells, noting that the number of somatic stem cells in the rats had decreased to about 30 percent of that in healthy rats' kidneys.
The research team also found somatic stem cells in human kidneys extracted from kidney disease sufferers after examining the organs with the consent of the patients and the University of Tokyo Hospital's ethics committee.
The researchers are poised to study how to multiply somatic stem cells extracted from human kidneys in a bid to develop a method for returning artificially multiplied cells back to the patients' kidneys. It will also study medication aimed at activating genes that cause somatic stem cells to restore damaged kidney cells.
As of the end of 2003, about 237,000 patients with chronic renal failure were regularly undergoing artificial dialysis. (Mainichi)
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There is one citation for a group able to harvest and use placental stem cells, a 2009 study from Childrens Hospital Oakland:
http://www.childrenshospitaloakland.org/research/stem_cells.asp
No mention at all of kidney regeneration form placental stem cells.
No mention of Kidney cell regeneraiton on the ISCI website either.
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According to this 60 minutes episode:
"Stem cell therapy is the standard of care in only leukemia and certain rare diseases of the blood, nothing else." (at around the 7 minute mark)
http://www.youtube.com/watch?v=ZtWIy5BDiKk
This is the 60 minutes segment Sunny alluded to in her post.
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2 things:
My mom has/had multiple myeloma and was treated with her own stem cells and a bit of chemo. She has survived!! They are using them and they are working.
Dr Robert Lanza has been working with stem cells for some time. He has already grown a functioning rat kidney. It will take time but we will have kidneys grown from our own stem cells on day in the near future.
why all the pessimism? check out Robert Lanza on the web. He's doing all sorts of things. :2thumbsup;
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I'll say it again:
I live in Canada and I can tell you first hand they're using stemcells for all kinds of diseases, especially in the treatment of cancer. Suggesting that it's a scam is just plain ignorant. My mom is a perfect example. She had a stemcell transplant last September and now she's almost fully recovered. It takes about 1 year to fully recover.
I don't know why people would think they aren't making progress with other diseases. Read about Robert Lanza. He's going full steam ahead with stemcell work but had to leave the US due to the Bush admin. He's continuing his work in Europe.
Just because you haven't heard of it doesn't mean it isn't happening. Open your eyes and your minds.
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Just google stem cell research in mexico.
Seems there are several big-clinics doing research. Real-fake-scam??? I have no idea. But they seem to be big places with good modern technology.
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As a person of faith I believe that two things are the future of medicine - One that what we now think of as "miracle" cures will become mainstream medicine as the emerging field of quantum physics and vibrational medicine over takes the newtonian based physical medicine that dominates the field now. (see you tube for Lynne Mctaggerts "the Field". Two i believe that eventually in my life time stem cell therapy will either be able to help me regenerate healthy liver cells and/or regenerate a fully functioning kidney.
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Just google stem cell research in mexico.
Seems there are several big-clinics doing research.
I haven't found one teaching hospital in Mexico that has started to apply stem-cell therapy toward curing human diseases.
Private clinics tend not to be doing regulated, peer-reviewed research. And given the seriousness of the diseases they claim to be treating, depending on a private clinic that isn't affiliated with a major teaching hospital strikes me as risky.
In the case of amyotrophic lateral sclerosis (ALS), the ALS Foundation was unable to substantiate the claims made by such private clinics. And some of the things the clinics said, go against mainstream science.
http://www.quackwatch.org/06ResearchProjects/stemcell.html
With a track record like that, I think I'll pass.
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I am merging many of the related posts and some followup regarding a member's quest for a kidney cure for her partner.
At the end you will see two news articles written 5 years ago. I knew I had seen them somewhere, and came across them today.
okarol/admin
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I am pasting in 2 articles below from the Los Angeles Times written in 2005. I knew I had seen them before because the journalist is Alan Zarembo, the same person who researched the story about finding a living donor that we were part of.
Yes, the clinics are not the same, the names and illnesses are different, but the circumstances and experiences are very similar. I thought it would be good to continue learning about this, even though Everlasting has resigned as a member here.
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latimes.com/news/nationworld/nation/la-sci-stemcells20feb20,1,1036275.story
latimes.com
SELLING SCIENTIFIC PROMISE
A desperate injection of stem cells and hope
By Alan Zarembo
Times Staff Writer
February 20, 2005
Alone at his computer, drool sliding down his chin, Tom Hill searched the Internet for anything that could save him.
His 55-year-old body was gradually shutting down. His muscles twitched uncontrollably. He could no longer talk, so he scribbled notes to communicate with his wife, Valerie.
Seven months earlier, he had been diagnosed with amyotrophic lateral sclerosis, also known as ALS or Lou Gehrig's disease an incurable deterioration of the nervous system that spares the cognitive parts of the brain, leaving its victims sharply aware as they slowly die.
The doctors told him there was no way to reverse the disease no drugs, no surgeries, no other therapies.
Tom refused to listen.
He had been a successful real estate developer in Atlanta, a hard charger who always got things done his way.
Now, he spent most of his time in a makeshift study above the garage, searching hour after hour.
Valerie could hear Tom's muffled movements. She rarely interrupted him. After nearly 29 years of marriage, it pained her to see him like this.
She knew there was little hope, but there was no point in arguing. She threw herself into the final preparations for their daughter's wedding and left Tom alone to search.
In the spring of 2003, he found http://www.biomark-intl.com .
BioMark International offered a stem cell injection for a variety of illnesses, including Parkinson's disease, muscular dystrophy, depression and ALS.
"All ALS research now cites the promise of stem cells as the only answer," the website said.
Tom had been reading about stem cells for months and knew them to be the next frontier of medicine, the primordial cells that could become unblemished tissue of any type. He was convinced they could replace the deteriorating nerve cells in his body.
He pored over BioMark's material, dozens of pages of patient testimonials, scientific references and news reports on the vast promise of stem cells.
Could this be his chance to be reborn?
Valerie could hear her husband's printer churning out page after page.
"It is worth a try," he scrawled in the margin of one printout.
ENTREPRENEURS ON SCIENCE'S FRONTIER
Tom Hill was just the type of patient BioMark was looking for.
The company was launched in the summer of 2002, less than a year before Tom found its website. It began small, in a rented condominium shared by its founders, Laura Brown and Steve van Rooyen, just a few miles from Tom's house.
At first, the company survived patient to patient, each paying as much as $21,000 per treatment.
Word was spreading. It was a good time for a stem cell business.
The once exotic science was in the news almost daily. In August 2001, President Bush allotted federal funds for stem cell research but said they could not be spent on the study and development of new lines of cells from human embryos. It was a compromise to address the concerns of religious conservatives and others who opposed any destruction of human embryos.
The restrictions came under attack from high-profile figures, including former First Lady Nancy Reagan and actor Christopher Reeve, fomenting a national debate that turned "stem cell" into a household term.
Reports of each new scientific advance circulated rapidly in the media and on Internet message boards for people with incurable diseases. Stem cell clinics began popping up in China, Ukraine, Barbados and other places.
Brown and Van Rooyen built their business on the idea that science had already proved the therapeutic power of stem cells. BioMark was simply making it available to the world.
The company had a scientific advisory board, a professional-looking website and doctors to administer the therapy in Atlanta.
"When something this powerful, this beautiful, is laid in your hands, in your path, you give everything you have to it," Brown said in an interview with The Times last fall.
At least 220 patients had received BioMark injections, she said.
The therapy, as advertised, was simple: an injection of 1.5 million stem cells in the abdomen. Everybody got the same type of cells, regardless of their disease.
"Once in the body, cells migrate to the site of the disease and begin producing the needed cells," explained a BioMark information packet.
BioMark cells, Brown told patients, were free from the "right-to-life issues" slowing the development of stem cell cures in the U.S. The cells did not come from embryos, but from blood harvested from umbilical cords after childbirth.
One BioMark brochure carried a disclaimer that the treatment was not approved by the Food and Drug Administration.
But some patients saw that as a badge of honor. Someone was working to help them, even if that help ran afoul of the government.
It infuriated Tom that politics had trumped science.
"People suffering from disease are told they have to wait for their cures," he wrote in a letter to his U.S. senators. "Many of these patients do not have time to wait and a research delay could be a death sentence."
Tom created a website to protest the federal restrictions. After 25 years as a Republican, he renounced his party membership.
He told Valerie about BioMark and instructed her not to tell his doctors.
She didn't know what to make of all this. She had never heard of anyone being cured of ALS, and she gingerly questioned his plan.
Tom stabbed at the keys on his voice synthesizer. An electronic retort pulsed back at her: "I've done a lot of research."
He felt sure: This was science.
A DISCOVERY WITH GREAT PROMISE
It began 50 years ago with the discovery of an odd lump on the scrotum of a lab mouse.
Researchers at the Jackson Laboratory in Bar Harbor, Maine, were investigating whether cigarette paper could cause cancer. One lab mouse had an unusual tumor.
Most tumors are made up of one type of tissue that grows out of control. But this one was a grotesque clump of budding muscle, bone, nerves and fat.
It was biology gone haywire.
After many experiments, the scientists found a smattering of unfamiliar cells mixed in this mad stew of life.
These tumor cells, they surmised, were transforming into other tissue types.
The cells gave scientists a chance to look at one of the most mysterious processes of life.
All the complexity of the human body hearts, lungs, brains, limbs starts from a single fertilized egg. As it divides, an unknown set of biochemical signals tells the multiplying cells to differentiate into the diverse tissues of the body.
When the cells are primitive, they have the ability to become any tissue "pluripotent" in medical terminology.
The mouse tumors offered a crude glimpse of these "stem cells" and their power to transform.
It would be decades before researchers possessed the technology to find them in embryos.
In 1981, scientists isolated embryonic stem cells in mice and successfully grew them into a kind of suspended animation in which the cells would indefinitely divide but not differentiate.
They later found that slight chemical changes could make the cells suddenly transform into a mishmash of tissue.
It took 17 more years before researchers at the University of Wisconsin isolated the cells from days-old human embryos.
The floodgates of medical fantasy were thrown open.
If scientists could decode the complex series of biochemical signals used to command the cells, they could create any type of tissue.
Doctors could grow new nerve fibers to patch a severed spine. They could make new organs to replace damaged ones without fear of tissue rejections. They could grow brain cells to help patients with Alzheimer's disease.
Science has made some progress.
At the National Institutes of Health, mouse embryonic stem cells were transformed into neurons that made the brain chemical dopamine. The new cells were used to treat symptoms of Parkinson's disease in rats.
At Stanford University, the same type of cells was used to make insulin-producing cells that kept diabetic mice alive.
At UC Irvine, human embryonic stem cells were transformed into nerve-wrapping cells known as oligodendrocytes, which helped rats with spinal cord injuries.
But scientists say the complex biochemistry of humans means that medical therapies are years, if not decades, away. Therapies could lead to cancer if the stem cells migrate to the wrong place.
There are currently no trials underway for human therapies using embryonic stem cells in the U.S.
"It's still in its infancy," said Gail Martin, a developmental biologist at UC San Francisco who was one of the first scientists to isolate embryonic stem cells in mice.
A CONFIDENT MAN, A CONFIDENT PATIENT
Valerie had never really noticed how life was balanced on a knife point, ready to topple her into darkness at any moment.
She was a 23-year-old stewardess for Delta Airlines when Tom spotted her at a wedding in 1973. Eleven months later they were married and on the path to the good life they both wanted.
Over the next three decades, they built a house in one of the toniest Atlanta suburbs, bought a vacation home on nearby Lake Burton, joined a country club and took ski trips to Aspen. Their two children attended private schools. Tom pushed hard for these things.
He was always so sure. That was one of the things that had attracted Valerie. He had a smooth, confident voice that put people at ease.
His voice was the first thing to go.
Valerie noticed in the spring of 2002 that his speech had begun to slur ever so slightly sometimes, as if he were drunk. She hoped the doctors were right, that he was suffering from allergies or stress from his business.
In October, a doctor told her that Tom probably had no more than a few years to live. She let out a scream. The doctor put her on an antidepressant.
Tom had bulbar ALS. The disease starts in the cranial nerves that control the lower face, tongue and palate, reaching the vital organs more quickly than a slower-killing variety that starts in the limbs.
Tom approached his illness like another real estate deal.
Early on, he walked into the office of Dr. Jonathan Glass, a neurologist who heads the ALS Center at Emory University, and announced: "I'm going to help you cure me by raising millions of dollars for your research."
Valerie didn't want to stand in his way. Still, there were so many things to do and talk about in the time Tom had left. There was their daughter's upcoming wedding, and plans for their son, who was in college.
Tom didn't want to discuss those things.
One day, he presented Valerie with a stack of printouts on BioMark.
The information seemed to make sense until she started reading the patient testimonials. One stood out: a 26-year-old ALS patient who had added 20 pounds of muscle in the two weeks after his treatment. "He feels incredible and is regaining strength," it said.
Valerie was dumbfounded. "This is a joke," she said. "If this is true, then everybody should be doing it around the world."
But it was futile to argue with Tom and always had been.
He was taking 28 pills and lozenges a day. No therapy seemed too outlandish. He tried curative magnetic insoles. He spent two weeks in Tijuana getting ozone treatments that were supposed to remove toxins from his body.
By the spring of 2003, he had dropped to 146 pounds, down from his healthy 172.
There was still time for hope. In June he summoned the energy to walk his daughter, Meredith, down the aisle at her wedding. He danced with her to the song "My Girl" while tearful guests looked on at the reception.
Tom threw himself into setting up a BioMark injection.
"They normally charge $21,000 but they want to be listed on my website," he wrote on a notepad.
He got the fee down to $10,000.
At least he had bargained, thought Valerie, who was starting to worry about all the money that seemed to be disappearing into a black hole of cure-alls.
On July 18, Tom received an e-mail from BioMark. For the time being, the closest place he could receive an injection was Toronto.
"I Am spending so much for my HEALTH NOW," Tom wrote on instructions to wire the $10,000 to BioMark's account at Bank of America in Atlanta.
The next week, Tom and Valerie flew to Toronto and took a taxi to a clinic. In the waiting room, Dr. Christopher Goddard was finishing up with another patient, a man with multiple sclerosis who had just received an injection.
For the next hour and a half, Valerie grilled the doctor about his credentials and the treatment. He told her he was a physician with a doctorate who worked at Lifebank Cryogenics Corp., a Canadian company that stores umbilical cord blood. BioMark paid him to fly from Vancouver, British Columbia, to administer the injections.
There was still time to back out and get their money returned.
Valerie looked at Tom hunched in a wheelchair. She knew this was his last hope.
"No, we'll do it," she said.
Valerie was still skeptical, but she felt a little better. Goddard seemed to know what he was talking about.
The stem cells could be injected into a vein, which BioMark said would bring the biggest results in three months, or into the fat of the abdomen for improvements that would come later but last longer.
Tom decided he would split the cells and do it both ways.
From the week he was diagnosed, he had told everybody that he would survive. He had fought so hard. This was a cure whose power nobody could deny.
At that moment, Valerie decided to duck out for a quick lunch.
Alone with the doctor, Tom felt the sting of two needles. In a few minutes, it was over.
Restoration had begun, he thought.
BIOMARK'S PLAN TAKES SHAPE
Laura Vanessa Brown, a co-founder of BioMark International, is 34 years old, tall, thin and blond.
"My background wouldn't naturally point me in this direction," she said in a telephone interview from a location she refused to specify. "I modeled for a long time."
Her father, Douglas Brown, an investment advisor in Waxhaw, N.C., said that Laura's job as a runway model sent her around the world through much of the 1990s. He said that she grew interested in nutrition and alternative medicine while watching her weight.
Laura Brown double-majored in speech and in radio and television at the University of North Carolina at Chapel Hill. She said her science education came unconventionally.
"I got to do a lot of studying and reading and writing while I was bouncing around not using my brain for work," she said.
In the late 1990s, she said, she landed in Los Angeles and studied yoga.
There, she met Steve van Rooyen. He had no science degree either, Brown said.
They became partners and headed to Atlanta in 2002 to work with Mitchell Ghen, an osteopath who had once treated Brown's father and had become interested in stem cells from umbilical cord blood.
But after a few months, the pair broke away to form BioMark, eventually relocating to an apartment in Miami Beach.
They worked hard to build their business, visiting doctors and alternative medicine practitioners to explain their treatment.
Dr. Alawode Oladele, an Atlanta oncologist, said he met with Brown at an Atlanta hotel, where she questioned him about cancer treatments.
Brown told him that BioMark had a team of scientists and reams of unpublished data showing the effectiveness of its treatment. Oladele was impressed.
That was the last he heard from BioMark.
Later, he was perplexed to see himself listed on BioMark's website as a member of the scientific advisory board. He found it odd but figured it didn't really hurt him.
Five other people said they were also surprised to find themselves posted as scientific advisors.
BioMark sent blood to Howard Wajchman, an Atlanta immunologist, who said he isolated the stem cells and sent them to doctors working with the company.
Dr. Dowman Covington, who worked at an Atlanta clinic, said Brown and Van Rooyen convinced him that a 1997 Georgia law the Access to Medical Treatment Act would allow him to try experimental therapies for people with incurable illnesses.
One of his first patients, he said, was Laura Brown, who wanted the cells as an anti-aging treatment. It was reassuring that Brown seemed to believe so strongly in the therapy.
Covington said he injected 46 patients for multiple sclerosis, ALS and cancer, receiving $300 or $400 per patient.
But after several months, he became suspicious when BioMark sent him a patient with a severed spinal cord, a condition that he saw no point in treating with the cells. He stopped working with the company in the spring of 2003.
BioMark started sending Atlanta patients to a clinic in Canada.
In October, the family of Craig Lauver, an ALS patient in Mifflintown, Pa., who was convinced that a BioMark injection could cure him, called the FDA with concerns about the company.
The FDA began a fraud investigation, persuading the Lauver family to help set up an undercover operation. Craig Lauver's brother, Nelson, said he asked BioMark to send somebody to inject the cells.
When a BioMark representative arrived from Arizona on Nov. 14, an FDA agent was there posing as Nelson's business colleague. The representative talked about the therapy, while two FDA agents in a bedroom controlled a video camera hidden in a lamp. After about 20 minutes, they entered the living room and pulled out their badges.
The FDA questioned and released the BioMark representative.
The same day, the FDA raided BioMark's office in Miami Beach, according to an e-mail the company sent to a patient.
The FDA froze BioMark's Bank of America accounts, which held $264,554.12, court documents show.
The company was shut down, but on the Internet it still looked like a thriving business. The website was dense with links to news articles about stem cells and diseases. The words "BioTech Advances" were bannered across the top, alongside the image of somebody peering into a microscope. A DNA double-helix spiraled down the left. There were links for "Research and Development," "Scientific Support" and "Testimonials."
Research by Catherine Verfaillie, the website said, proved the power of BioMark stem cells.
But Verfaillie, director of the Stem Cell Institute at the University of Minnesota, explained in a March 2004 letter to the FDA that her work had been misrepresented.
"The information has no scientific credibility and it may mislead people who are seeking treatment and cures for serious diseases," she wrote of the BioMark website.
Several stem cell experts who reviewed the website for the Los Angeles Times agreed.
Cord blood stem cells have been used to treat some blood diseases and to rebuild the blood-forming system after chemotherapy. But scientists doubt they would be useful for neurological diseases because current evidence suggests that any ability to transform into non-blood cells is limited.
On the Internet, satisfied BioMark customers described improvements, such as smoother skin, better sleep and more energy sometimes within hours of their injections. Scientists leave open the possibility that the patients are experiencing more than the placebo effect, but without controlled clinical trials it is difficult to know what is happening.
"This is just evil," said Lawrence Goldstein, a professor of cellular and molecular medicine at UC San Diego School of Medicine.
Dr. Irving Weissman, a Stanford University professor and the first person to isolate blood-forming stem cells, concluded: "It's totally disgusting."
After the FDA search, Brown and Van Rooyen left the United States.
WAITING FOR THE CELLS TO WORK
A month after his injection, Tom swore that it was easier to close his mouth.
Valerie was skeptical, but Tom told her to be patient. "Six to eight weeks," he would say, echoing BioMark's claims about how long it would take to start seeing the biggest benefits.
By the two-month mark, his breathing had plunged to 46% of normal.
When Tom could no longer climb the stairs to his office, he spent his days in a living room recliner, a computer in his lap.
His son, Thomas, had taken the year off from college to help care for his father. Thomas struggled now to transfer him in and out of the lift installed in the stairwell. His father's body was turning to dead weight.
At this late stage, Valerie wished that Tom could help patch the holes of their life apologies, advice for their children, regrets, kind words that could help her carry on without him.
She begged him to make peace with his life.
"Why are you so mean to me?" Tom typed on his synthesizer. "You want me to die soon."
"No, we want you to talk with us," Valerie said. "Isn't there something you want to tell us?"
Tom just shook his head.
She asked whether he wanted to be buried or cremated. He turned up the volume on the television to drown her out.
One night Tom plowed his wheelchair into furniture, knocking over lamps and chairs. Valerie called the police, telling them that he had tried to ram into her too.
After that, she refused to guard his secrets and told Dr. Glass about the stem cell treatment.
The neurologist understood. Tom was not his only patient who had sought unproven stem cell therapies abroad.
Valerie asked a lay minister from her church to talk with her each week.
All that fall, a pungent odor wafted through the house a brew of Chinese herbs that Tom poured into his feeding tube.
In early November, Tom received an e-mail from BioMark stating that the board of directors wanted to offer him a second treatment. He would only be required to pay about $1,000.
"Please do not contact them and tell them it doesn't work," Tom typed in a message to Valerie. "I need anything now to help me and I will try anything."
Perhaps the first stem cell injection just needed a boost. He was ready to wire the money as soon as BioMark scheduled an appointment.
Then the news arrived. Tom showed Valerie the e-mail from the FDA. BioMark was under investigation for fraud.
"I guess you won't be going for that second treatment," Valerie told Tom.
He lowered his head.
He still believed in BioMark, but there was nothing he could do on his own. Valerie could barely listen to him anymore.
She dug up the number for the Canadian doctor who had injected Tom, and demanded a refund.
Dr. Goddard sent $1,920, which he told her was his fee from BioMark. He did not return several phone calls from The Times.
The money arrived with a note saying, "I love my patients." There was also a book, the 1969 classic by Dr. Elisabeth Kubler-Ross, "On Death and Dying."
Valerie glanced at the book and deposited the money.
A RESOLUTION WITH NO PEACE
On March 23, 2004, Tom Hill died at Haven House Hospice in Atlanta. He was 56.
At a memorial service at Northside United Methodist Church, old friends spoke about their fraternity days at the University of Georgia. The minister remembered how happy Tom had been to walk his daughter down the aisle at her wedding.
Valerie decided to have his body cremated. Half his ashes were scattered on Lake Burton. Valerie plans to disperse the rest in a memorial garden at their church. For now, they are on a shelf in his office, surrounded by pictures of the multimillion-dollar office complexes he had built around Atlanta.
Two months after Tom died, Valerie put a recording of his memorial service into a cassette player at home. The last two years had nearly destroyed her memories of their marriage. The old stories helped. She replayed the tape every few days.
"Eventually, I'll hopefully be able to remember the good times," she said.
She has begun training to become a Stephen Minister, a church counselor like the woman who had helped her through Tom's final months.
The FDA recently sent her a check for $6,896, part of the money the government seized from BioMark. The company remains under investigation.
One afternoon in December, Valerie returned home to find a message on her answering machine from BioMark.
It was for Tom.
Valerie didn't know it, but the company had set up an office in London and found doctors in Tijuana and Rotterdam, the Netherlands, to start administering their injections again. It set up a Swiss bank account to receive payments from patients.
The caller said she would phone back but never did.
A NEW SEARCH FOR HOPE
The patients arrive every few weeks at the Corporativo Oncologico in Tijuana Americans slumped in wheelchairs, hobbling on crutches or carried by loved ones toward the stem cells inside.
The clinic's main business is providing low-cost radiation treatments. But recently Dr. Armando Garcia, the head of the clinic, began administering stem cells for BioMark.
He stepped into the waiting room with an orange-and-white bag labeled "biohazard." He reached into the bag and pulled out a frosted vial.
"These cells are very good," he said.
Marsha Weeks arrived from Anacortes, Wash., in September, hoping to ease her bouts of pain from multiple sclerosis. Living on Social Security, the 29-year-old single mother maxed out her credit cards to pay for a single $10,000 treatment.
A few weeks later, 25-year-old Richard Welsh leaned into his crutches and ascended the ramp to the clinic. He prayed the cells could repair his spinal cord, crushed in a car accident five years earlier.
His hometown, Klemme, Iowa, had rallied behind him. A dentist donated electric toothbrushes for a fundraiser. The local Wal-Mart chipped in $750.
Greg Evans journeyed to Tijuana from Robesonia, Pa., hoping to save his only child. Eleven-year-old David was withering from Duchenne muscular dystrophy, a fatal degenerative disease.
"We're staking our lives on this working," Evans said.
Copyright © 2010, The Los Angeles Times
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latimes.com/news/nationworld/nation/la-sci-stemside20feb20,1,6560828.story
latimes.com
Outside the U.S., businesses run with unproved stem cell therapies
By Alan Zarembo
Times Staff Writer
February 20, 2005
At the junction of desperation and the fantasies of science is a business opportunity.
Stem cell clinics offering unproven therapies for a range of diseases have become a multimillion-dollar industry, operating in Mexico, Ukraine, Barbados, China and elsewhere.
Charging tens of thousands of dollars, the clinics typically draw patients who have exhausted conventional therapies.
The backgrounds of the people behind the clinics vary many see themselves as crusaders for the disabled and dying.
The field of stem cells is so new that almost anybody can claim its potential. Without subjecting their therapies to clinical trials the standard of Western medicine it is difficult to know if the treatments work.
The clinic operators can point to satisfied patients but not to scientific proof.
At least three clinics trace their roots to the Institute for Problems of Cryobiology and Cryomedicine in Kharkov, Ukraine. Founded in 1972, the institute researched techniques for freezing biological samples for use in medicine and agriculture.
For nearly two decades, scientists at the institute experimented with solutions made from aborted fetuses, injecting people for ailments including diabetes, multiple sclerosis and depression.
Dr. Valentin Grischenko, the institute director who led much of the research, said many patients showed significant improvements.
In the early 1990s, Ukrainian researchers familiar with the institute's work started a Kiev company called EmCell, charging $25,000 per treatment.
Some of its first American patients came about 10 years ago with Dr. William C. Rader, a Malibu psychiatrist who ran a chain of eating disorder clinics and worked as an on-air medical expert for KABC-TV in Los Angeles during the 1980s.
Rader, who had heard about EmCell through a business contact, later formed his own company, offering treatments in the Bahamas.
The Bahamian government asked him to leave in 2000 after a New York television station aired a critical report.
Rader, who said his cells come from the former Soviet republic of Georgia, now meets patients one weekend a month in the beachfront city of La Romana in the Dominican Republic. His company, Medra Inc., is based in Malibu.
Some families say he has reduced their children's suffering from brain damage and autism.
He said he has arranged more than 1,000 injections, charging $25,000 for the initial treatment and $8,500 for each follow-up.
"I have literally cured early Alzheimer's," he said.
"I think there is a higher power," Rader said. "I feel that I am just simply a conduit."
Rader, 66, said he has not published anything about his therapy because that would open him to attack from a "conspiracy" of scientists, government authorities, pharmaceutical companies and abortion opponents.
Dr. Yuliy Baltaytis, a Ukrainian physician who had collaborated with Rader in Europe and the Bahamas, said he doubted his homeland would get credit for the procedure.
"Everybody understands the Moscow ballet. Everybody knows the Kalashnikov rifle. Everybody knows the first man in space was Yuri Gagarin
. But nobody believes we can do something first with stem cells," he said.
Baltaytis now works as scientific director of a separate clinic in Barbados.
The Institute for Regenerative Medicine opened in the summer, charging $25,000 for an injection of fetal cells from the Ukrainian cryogenics institute.
One of the busiest overseas clinics is run by Dr. Hongyun Huang, a 49-year-old Beijing neurosurgeon who says he has a waiting list of more than 1,000 foreign patients.
Huang earned medical and doctoral degrees in China before spending the late 1990s as a postdoctoral student at New Jersey's Rutgers University, where he was introduced to olfactory ensheathing glial cells.
Found in the lining of the nose and the olfactory bulb of the brain, the cells help replenish neurons that support the sense of smell. They have been studied for nearly two decades with no consensus about their therapeutic value.
Huang and others distinguish them from stem cells, but they hold a similar appeal to researchers and patients for their ability to regenerate themselves, at least in laboratory cultures.
Huang returned to China in 2000 eager to try them in humans. He treated people with spinal cord injuries before taking on patients with amyotrophic lateral sclerosis, or ALS, injecting the cells into holes drilled into their skulls.
Most of his patients are from the United States and Europe. They pay $20,000 each for the surgery.
Unlike most operators of overseas stem cell clinics, Huang has confronted his skeptics.
So many Americans had gone to China for his therapy that the nonprofit ALS Therapy Development Foundation flew him to Boston in the fall to explain his technique to a group of Harvard University researchers.
His evidence consisted of five short videos showing ALS patients before and after treatment.
The "before" shots showed patients in hospital beds or staggering on crutches. The "after" shots included a patient who sang on command, a woman who took a few steps with the help of hospital workers and a Chinese man who could stick out his tongue.
Huang believed he had made his point.
It was a puzzling display for the Harvard doctors. Where were the data? What was the biochemical mechanism?
"We don't know this," Huang responded.
The Harvard scientists suggested that Huang was only seeing the placebo effect, perhaps amplified by his own desire to be right. Or, they said, he was simply watching the normal ups and downs of a disease.
Huang acknowledged that his evidence was slim, but he believed he was at least offering hope to his patients.
"Most American doctors just tell patients, 'You will die soon. You can't get any treatment,' " he said in an interview. "I never tell patients this word. Even in this condition, you must encourage the patient."
After his talk, Huang was packing up his computer when Philip Decter of West Orange, N.J., approached him. ALS was slowly crippling his 44-year-old son, Andrew, who was there in a wheelchair.
The father wanted to know when they could come to China.
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I'll say it again:
I live in Canada and I can tell you first hand they're using stemcells for all kinds of diseases, especially in the treatment of cancer. Suggesting that it's a scam is just plain ignorant. My mom is a perfect example. She had a stemcell transplant last September and now she's almost fully recovered. It takes about 1 year to fully recover.
I don't know why people would think they aren't making progress with other diseases. Read about Robert Lanza. He's going full steam ahead with stemcell work but had to leave the US due to the Bush admin. He's continuing his work in Europe.
Just because you haven't heard of it doesn't mean it isn't happening. Open your eyes and your minds.
Carson, you seem to be confusing adult stem cells, placental cells, and embryonic stem cells. Adult stem cells - in the form of bone marrow transplants and more recently peripheral stem cell transplants - have been going on for decades. Wonderful news about your mother, long may it continue, but this is not a new treatment and not what Everlasting is referring to. I just received a stem cell infusion myself, from my husband, and if they had not been able to harvest enough stem cells from his blood, they had his permission to extract bone marrow from him while he was under for his kidney donation to get the stem cells that way. I know from my experiences that peripheral stem cell harvesting is a delicate procedure that has to be done under the strictest of standards or you are simply wasting your time. It sounds like your mother received a stem cell transplant at an experienced and capable facility - she also had an autologous stem cell transplant, which is far less likely to cause problems than allogenic.
I've said before that I have access to my own placental cells that have been banked for going on eight years now. And these US cord blood banks are not new, either. In fact, I used to get many emails and mailings about how women are now banking their own (brace yourselves) menstrual blood because that has now been shown to have stem cells as well. If these banks were able to reverse kidney damage, they would not keep this a secret.
I really don't believe that the clinic that Everlasting went to is doing anything that resembles actual research. They are just mindlessly injecting cells into wealthy tourists without any worry for what the results will be. And I remain concerned about where they are getting these cells. The site states that they come from women who have had caesareans, but does not mention anything like informed consent or compensation.
I wish Everlasting had answered the simple question about what type of kidney failure Victor had. This is hardly an unreasonable question. I really don't understand the defensiveness, anger, and secrecy if she really believes in this and wants to share the process with all of us. I truly hope she and Victor find the answer and that they don't ever feel they were ripped off, because so long as they have no regrets, other people's opinions should not be a concern to them.
Karol, thanks for the articles. I have to admit I only skimmed the longer one - it was all just too sad for me to read through.
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Please read these articles.
8)
Stem cell therapy 'damage' seen in kidney disease case
http://ihatedialysis.com/forum/index.php?topic=19253.msg327542#msg327542
Danger, Stem Cell Tourists: Patient in Thailand Dies From Treatment
http://ihatedialysis.com/forum/index.php?topic=19253.msg327775#msg327775