I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: Everlasting on November 23, 2009, 10:15:36 AM
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Victor, my partner will be receiving stem cell therapy on 2 March 2010. He will fly to McAllen, Texas where everything is put in place for a trip across the river into Mexico.
He has received a conference call and is told that he can expect no less than his function of 25% to increase to 50%. He had a stroke in September and has residual symptoms from that event -- these too will be addressed for the same price.
The physician makes a small (1 in.) incision near the problem area and inserts stem cells together with tissue and closes it up with 1 disolvable sutures. In Victor's case the cells will be placed in both areas of the kidneys as well as at the temporal area and in the location where the spinal cord meets the skull. The latter will address the post stroke limitations.
The whole process from leaving the hotel to the end of the treatment is a three hour event. Just think - 3 hours of stem cell stuff opposed to hours of dialysis or the less than 100% outcome for transplant. We do acknowledge that there are a lot of risks in stem cell therapy however the outcome has such a future to it!!....Everlasting (advocate for Victor)
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Hmmmm - I just put a reply on this thread but it didn't go on!
Anyway, how exciting for you both. This is the new frontier of medicine and you are in on it! Keep us informed about how it goes. Apologies if my other thread somehow appears later....
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How much is this "guarantee" costing? And what if he doesn't get to 50% function? (although a GFR of 25% isn't realy end stage).
Hmm 3 hours in mexico so I could double my GFR to 12? WOO HOO! Where do I book? :bow;
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I have put the underneath question to Everlasting at the “Medical Breakthrough Site of IHD”
and Hanify kindly explained me her researches.
What concerns me about Stem-Cell-Treatment is,
it still appears to be at an experimental stage
and it seems to be sold to desperate patients who are willing to travel to countries
where regulations are allowing such experimental treatment on patients to go ahead.
I have been following the research on the regeneration of kidney tissue through stem-cell-therapy.
This research seems to be in its infancy and concerns primarily acute renal failure due to an accident,
where experiments are being made to regenerate part of the kidney.
But, I cannot find any successful research on regeneration of the filtration mechanism
for people with chronic kidney disease. Going back to my original question:
what really happens to those patients Everlasting mentions AFTER their treatment?
I just repeat my question which I pout to Everlasting on “Medical Breakthrough”:
I have read about different methods of stem-cell-treatment,
some are quick and of low cost and others require a long Hospital stay
& are expensive. I have yet to find conclusive evidence
that any method works successfully.
I knew of a girl who received stem-cell-treatment
to treat her Lupus –SLE –flare-up at a University-Teaching-Hospital.
She was kept in total isolation for many weeks,
& the treatment depleted her resistance to infection etc.,
but these precautions were totally ineffective
because she contracted a virus which eventually killed her.
From this I gather that stem-cell-treatment is still in its infancy,
& it is not a treatment readily available in major Hospitals.
Therefore, when I hear of someone who has been treated or is to be treated,
I am curious to know more about it, as science seems to be moving forward very fast.
Would you be kind enough to let me know what stem-cell-treatment will Victor have,
how long will he stay in Hospital and roughly how much does it cost?
Thank you, Kristina.
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The last thing I want to do is throw cold water on anyones hopes and dreams. I really hope that this Mexico Clinic delivers on all their promises as it would be a great step forward in combating Kidney disease. On the other hand we should be well informed before we invest our time, our money and our dreams on unproven treatments that have not been subjected to rigorous clinical evaluations.
Please go to this link and scroll down to the article entitled "Americans Make Run For The Border For Unproven Stem Cell Therapy:
http://spacecityskeptics.wordpress.com/2008/11/
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The last thing I want to do is throw cold water on anyones hopes and dreams. I really hope that this Mexico Clinic delivers on all their promises as it would be a great step forward in combating Kidney disease. On the other hand we should be well informed before we invest our time, our money and our dreams on unproven treatments that have not been subjected to rigorous clinical evaluations.
Please go to this link and scroll down to the article entitled "Americans Make Run For The Border For Unproven Stem Cell Therapy:
http://spacecityskeptics.wordpress.com/2008/11/
It's time to throw cold water on all these multiple posts.
Thanks brmoore!
8)
http://spacecityskeptics.wordpress.com/2008/11/20/americans-make-run-for-the-border-for-unproven-stem-cell-therapy/
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Yes, I did a bit of research on this myself after reading all of these posts, and what disturbs me is how many of the "success" stories across the Internet seem to be written in exactly the same voice, with the same phrases repeated over and over again.
I am especially concerned about injecting *anything* near the central nervous system, especially since you do not seem clear on what exactly it is. This is an invitation to serious infection, including bacterial meningitis which will kill or maim a person quite quickly. I don't understand the part about injecting tissue. What tissue? What is the purpose? Where does it come from? How is it matched to the recipient? Have these injections, which I assume are derived from human material, been tested for the many infectious diseases out there? (HIV, Hep-B, Hep-C) This sounds incredibly dangerous to me.
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Everlasting, I too, am concerned about your enthusiasm for this treatment.
It is easy to grasp at straws when we desperately want something to be true. But it is important to remember that if it seems too good to be true, it probably isn't true.
Please be very, very careful. The last thing we would want is for this to have adverse effects on both you and Victor.
Aleta
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I discovered when I got sick that I am a ''Doctor person'' - you know, I believe everything the doctor says and I think they really do have my best interests at heart. So I am wayyyyy too chicken to go away from what my oncologist or neph says, and try alternative methods. Having said that, I'm well aware that things are not going to change unless people are brave enough to give things a shot. I just know I'm not one of them. So I am praying that this will work for you guys, and thankful to you also that you are trying something I wouldn't, but also petrified that something will go wrong, and that it's some kind of snake oil!
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I hate to be a Nay Sayer, but you say that this treatment is in Mexico? I mean no disrespect to Mexico in general, but Mexico is famous for cures for cancer where they put urine in a centrifuge and somehow re-introduced the by product back into the body. . . All of the patients receiving the miracle cure died or didn't get any better. . . If the miracle cure is something that is banned by the food and drug admin. in the US, I'm wondering if the "cure" somehow works in Mexico. Sure, the Christian right has helped make government funding for stem cell research illegal, but there's plenty of research going on here in the US and elsewhere. From what I understand, the usefulness of treatment is still a little way off. I believe that if stem cell treatment in Mexico were actually viable, Micheal J Fox would have already gone to Mexico and would be doing more "Back to the future" movies. If Victor goes to Mexico and gets his kidney effectiveness back up to 50%, he still is not "cured". He will be just 50% "cured. Some people with hope will believe anything, If stem cell research does come up with a real cure for shot kidneys, and the treatment is approved, I'll be one of the first to jump on the bandwagon, but I'm not going to Mexico for a "voodoo" treatment that after spending a rediculous amount of money and being told "I'm sorry the treatment didn't work for you. . ." Even getting a kidney replacement isn't a "cure", it's just a different set of treatment rules that for a time allows you to live without going to dialysis.
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If a possibility is found to rejuvenate sick organs
to function again through stem-cell-treatment,
will the Pharmaceutical Companies allow stem-cell-treatment to succeed,
because that success would surely hugely deplete the profits
of the Pharmaceutical Companies.
We should not forget that at the present
they make billions every year
from selling medicines to treat an enormous variety of ailments?
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I believe the stem cell therapy that Everlasting is talking about is placental stem cells, which does not pose the ethical questions that embryonic stem cells do (although, it does beg the question: from whom are they harvesting these placental cells, and are these women aware of the huge financial gain that the doctors are reaping?)
Placental cells - cord blood - are used in the US already. I know a bit about it, since I have banked cord blood for both of my children with a cryogenics lab in the states. I went in to the agreement knowing full well that there was almost no chance that I would need to use it, as most of the diseases that it can treat are exceedingly rare. Still, with my health history, I felt it was insurance that I wanted to have. The only fairly common disease it can treat is diabetes (type 1), and the company states that it is not a cure, it has merely allowed individuals to slow the progression of the disease, or come off of insulin for up to a few years.
There is a guarantee with this stem cell company, but it is carefully worded and I doubt I will ever be in a position to demand my money back. If one of my kids, or my husband, or me (it can treat all of us, supposedly) needs to use the blood and the cells are not usable when a doctor tries to transplant them, then we can make a claim. I believe the guarantee is good for 10 years. With my first son, the cost was $1200 to harvest, plus $50 a year for storage (that price never changes). It was a lot more for the younger - I think $3600 to harvest, and $100 a year for storage (that price is also fixed). The company makes no claims that the procedure will help you, just that the cells will be viable for a certain number of years. It is the "guarantee" from this doctor that really sends up the red flags for me.
In another thread, Everlasting did state that she felt she had nothing to lose because her life was so difficult at present. I am convinced that if I felt the same about my life, I would be willing to try something like this as well. I am very hopeful that this will help Everlasting and her husband, but the skeptical side of me says that this is unlikely.
Good luck to both of you!
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If you listen to the patient here http://www.aculongevity.com/video6.html (it's hard to hear, you have to turn up the volume) says he is still on dialysis waiting for a transplant. If his numbers are better it is because he is on dialysis! He says the diabetes is better, but the kidneys require continued dialysis that he has been on for 2 years. So sad that out of desperation people will pay good money for these treatments. My God, we don't even drink the water in Mexico, but you'll let them inject something???
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Where's "Dr. Mitch" when you need him? :o
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I'm really with Hurlock on this issue. It scares the heck out of me the need to go "just over the border" for this treatment because it's clearly illegal in the US. Now yes, as Hurlock says, the bible bashers have a lot to answer for in terms of getting their way blocking a lot of stem cell research, because I truly believe it is the future. I do however think we are in the early stages of seeing results that could help the average person - it WILL take time - maybe not even in the next 50 years... but maybe in 20.. who knows.
Kristina makes an interesting point about the pharmaceutical companies having a vested interest in shutting down these things - kind of like the oil lobby with alternative forms of energy/cars etc.... I can see that, but I would also think that western governments would want something like this to work out because it would massively lessen the burden on the govt. welfare system if, for example, you could pull 90% (let's say) of kidney failure patients out of the need for dialysis or meds (or even transplant) and at the same time some number of those folks could return to work, thus boosting the economy. I know the big companies are powerful, but surely if positive results were to come out they wouldn't stay hidden for long.
Don't get me wrong here - I sincerely hope that Everlasting and her husband receive the benefits they expect from this risky proposal. I also read the comment about having nothing to lose - and I can respect that. I, myself, would not go to Mexico for 3 hours for this.. but obviously watch in interest to find out what transpires.
btw isn't Coke made in Mexico with cane sugar supposed to be super awesome? >:D (I mean the drink, not the powder :p )
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btw isn't Coke made in Mexico with cane sugar supposed to be super awesome? >:D (I mean the drink, not the powder :p )
Richard - yes, the Coke from Mexico with the real can sugar *IS* super awesome! You used to be able to buy it by the case at Costco (but they have recently stopped carrying Coke products :( ) or, you can sometimes buy it by the bottle at Walmart. They come in the old fashioned glass bottles and are yummy! I think it's more crisp, and I don't feel like it coats my teeth like the HFCS stuff does.
KarenInWA
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I'm really with Hurlock on this issue. It scares the heck out of me the need to go "just over the border" for this treatment because it's clearly illegal in the US. Now yes, as Hurlock says, the bible bashers have a lot to answer for in terms of getting their way blocking a lot of stem cell research, because I truly believe it is the future. I do however think we are in the early stages of seeing results that could help the average person - it WILL take time - maybe not even in the next 50 years... but maybe in 20.. who knows.
Kristina makes an interesting point about the pharmaceutical companies having a vested interest in shutting down these things - kind of like the oil lobby with alternative forms of energy/cars etc.... I can see that, but I would also think that western governments would want something like this to work out because it would massively lessen the burden on the govt. welfare system if, for example, you could pull 90% (let's say) of kidney failure patients out of the need for dialysis or meds (or even transplant) and at the same time some number of those folks could return to work, thus boosting the economy. I know the big companies are powerful, but surely if positive results were to come out they wouldn't stay hidden for long.
Don't get me wrong here - I sincerely hope that Everlasting and her husband receive the benefits they expect from this risky proposal. I also read the comment about having nothing to lose - and I can respect that. I, myself, would not go to Mexico for 3 hours for this.. but obviously watch in interest to find out what transpires.
btw isn't Coke made in Mexico with cane sugar supposed to be super awesome? >:D (I mean the drink, not the powder :p )
Here here! or is it Hear hear! Anyway, I'm glad we agree on this subject.
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btw isn't Coke made in Mexico with cane sugar supposed to be super awesome? >:D (I mean the drink, not the powder :p )
Richard - yes, the Coke from Mexico with the real can sugar *IS* super awesome! You used to be able to buy it by the case at Costco (but they have recently stopped carrying Coke products :( ) or, you can sometimes buy it by the bottle at Walmart. They come in the old fashioned glass bottles and are yummy! I think it's more crisp, and I don't feel like it coats my teeth like the HFCS stuff does.
KarenInWA
Off-topic, but to add about Coke with sugar, there is "Kosher for Passover" Coke during this time of year. Coke actually manufactures some of their products with real sugar to meet the Jewish market demands. You can find it in some markets, call and ask around. They don't use cane sugar in this process, but rather Sucrose, which is the refined white sugar you get when you process sugar beets. More about it here http://www.bevreview.com/2006/04/07/review-review-kosher-for-passover-coke/
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I heard a scientist talking about this issue today and she said that there are amazing things happening with stem cell treatment, but the reason it's not in centres yet is because they still don't really have a handle on how to stop the stem cells rejuvenating! So there is still a danger of tumours developing. I've already got one lot of unwanted cells growing in my body - I'm not adding to that any time soon! But if I had few other choices maybe I would risk it. Who knows till you're in that situation.
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Karol thank you for your thoughts on stem cell therapy in Mexico....yes, I have given thought to the standards in Mexico. Unfortunately I was not able to hear the video you suggested...clarity was a problem. Many of my concerns such as a sterile environment in Mexico is one of many high level concerns. My brother was recently treated in the clinic which I will be attending. His wife - a nurse - and my brother speak highly of all aspects of what they experienced and witnessed. Both Victor and I have weighed the quality of our present lives to what we could in some way improve upon --- we are both feeling that we are not only being responsible and accountable to ourshelves but to our families as well. If we do not go ahead with this there is no hope for us to live independently in the community....a nursing institution would become our home. This thought alone is something I cannot accept without going the distance to stem cells first. There is no worse outcome and I know that I and Victor's longevity would be questionable should we turn our backs to stem cells and go to a facility instead. Victor's present situation is grim....the toxins that his kidneys are not clearing add to the post stroke struggles. He is not well enough for the fistula surgery at this point Everlasting
If you listen to the patient here http://www.aculongevity.com/video6.html (it's hard to hear, you have to turn up the volume) says he is still on dialysis waiting for a transplant. If his numbers are better it is because he is on dialysis! He says the diabetes is better, but the kidneys require continued dialysis that he has been on for 2 years. So sad that out of desperation people will pay good money for these treatments. My God, we don't even drink the water in Mexico, but you'll let them inject something???
Edited: Fixed quote tag error - okarol/admin