Monterrey, Mexico.....New Hope - Page 3

MtPockets · 08-28-2009, 09:27 AM

About the only thing going away (Not ALS) is people's money.
There are studies of work with stem cells all over the world; but not one has shown any positive results, YET. If they cannot regenerate nerve cells in a rat, how can anyone claim to do it in a human.
Oh, I just love the term DONATION for the treatment. That I guess is so you cannot sue them if you develop tumors from the injections and die.
I always cling to HOPE, but false hope is not good for anyone. It just crushes your soul when you find the end results.
I hope and pray for a treatment, cure, anything, but so far you might as well eat Aluminum foil, it will do you just as much good.

hopingforthebest · 08-28-2009, 09:36 AM

Dear Shane:

Praying for a great recovery and good prognosis!

Patty

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BethU · 08-28-2009, 11:24 PM

tgraue ...

I'm glad your sister is feeling better after the treatment, and hope this continues! Please keep us posted on how this goes. I really appreciate your and Shane's sharing your experiences with us. It is good to have a first-hand report on these things.

As to "donation" vs. "fee," if the laws in Mexico are similar to those in the US, the distinction is probably for tax purposes, not for "scamming" purposes.

Al · 08-28-2009, 11:37 PM

Oh, so the creeps don't want to pay taxes on their ill gotten gains. Sounds like a real bunch of humanitarians to me. Now I'm really suspicious.

AL.

Carolan · 08-30-2009, 12:09 AM

I don't mean to burst anyone's bubble, but there is no evidence that stem cell therapy works at this point. Stem cell research is a great hope for the future of neurological diseases, but right now, it's still in the early research stage. In order to know whether it works, doctors need to conduct lengthy blind controlled studies; otherwise, all we have are anecdotes from people we don't personally know. If you have $18k, take a really nice vacation and put the rest of the money in savings because you'll need it for various disability-related expenses.

Best of luck, and yes, let's hope that at some point in the future, stem cell research will produce a cure.

Al · 08-30-2009, 12:25 AM

18K is cheap. My friend spent 30K and wouldn't say how much the second visit cost. Oh and did I mention he's gone? About 5 months after the second visit. Guess he won't be mentioned on their website.

AL.

BethU · 08-30-2009, 10:58 PM

Sorry, Capt Al, I really don't understand the anger toward someone trying unproven treatments.

Every one of us has a different path to follow and we make our decisions based on our own needs and value systems.

To some, having a vacation of a lifetime sounds great. To others, not so much. I think the people who are opting to try unproven treatments instead of trips to Disneyland are not stupid, or suckers, or ignorant. They are intelligent human beings fighting for their lives. Having people on the forum constantly tear them down, over and over and over again, with anger and sarcasm doesn't help anybody.

If someone benefits for three months from a particular treatment, feeling better and more energetic, I say hooray for them! That's about the same benefit you get from Rilutek, for about the same amount of money, except Rilutek doesn't make you feel better.

I really believe we should support each other on this forum, and accept the fact that not everybody is going to make the kind of decisions we all approve of. It's fine to express your disapproval once or twice, but then ... can we just let it go? Wish the PALS well and hope s/he finds some benefits. They are doing us all a service by sharing their experiences with us!!

As to "real hope" vs. "false hope": The hope that they will find a cure for ALS "someday" is not really a hope. It is a certainty that they will. It is also a certainty that it will be way too late for most of us. The hope that a treatment will work is not "false." That's what hope is ... the feeling that a desired outcome may come about.

peter57 · 08-31-2009, 01:06 AM

I agree with you Bethu.
We should be supporting people who, for whatever reason decide to try somthing out to improve their condition.
By all means point out some facts to them ie that it isnt yet proven to work or "joe blogs" had it done some time ago and it didnt improve them, but then support them in their decision.

Who on this site hasnt tried somthing to try and improve their life ie some different vitamins or natural products, i know i have.
Some dont do any thing and others do.
Someone has to be the first to find somthing that improves the quallity of life we have, and i, for one appreciate the reports that people put in re their "trials".

I know if it works (or any other treatment for that matter) it will go through the world like wild fire but it would also be nice to hear it on this site, perhaps even before it gets annonced.

cheers
Peter

tdamess · 08-31-2009, 01:46 AM

i see both side's of what is being said , i respect al's view's and understand we all have to go our own path and , each side gives us some food for thought..... feelings of anger,sadness,depression, envy, and the... why's ...is all normal to have just some days are better than other's , and how new the newest loss is and sometimes thing's just come out the wrong way but, we all care what happens to each other .... so i thank you all for your thoughts no matter what and also for the bright side that thier are times i come in here so despeate,so down and helpeless and someone in here make me smile....thanks again people

t34gib · 08-31-2009, 12:22 PM

I have to go with Beth on this one. As far as I am concerned the $950 spent on Rilutek everymonth by my insurance company is the same thing. That would be about 20 months worth. For 3-6 months of life? I don't take it because it will keep me alive for another 3 months. I take it because they can study me and gauge what it may do. The same reason I will go on the ceftrioxone test next month. I may get the placebo, I may get the real stuff. It may hel, it may not. But at least we will learn somehting from it. The length of my life is not what is important. The quality of my life and what I can do for myself and for others is what is important. I have always said it. If you need someone to try it on, well here I am. I need to be of some value. And, hopefully the next generation won't have to go through what we go through. So go out and try anything. That is the only way we will find that one thing that does help.
NancyS

rocmg · 08-31-2009, 01:27 PM

i agree with what others have said, particularly BethU.... trying new unproven treatments is, to many people, a coping mechanism.

it seems so silly to say to a dying person "save your money -- buy a new car or visit a far-flung destination -- enjoy your life while you can" -- it doesn't matter what car you drive or where you visit in the world, ALS comes with you. there's no getting away from it. of course i wouldn't condone putting yourself into debt or remortgaging your house to try something unproven. but if you can afford to take the chance and you're an adventurous sort, then you shouldn't be faulted for trying.

asantiago · 08-31-2009, 01:34 PM

That's how we felt when we took mom to Germany which was a lot less expensive than these Mexico treatments I'm reading about here. She had the money and was going SO fast that it was worth 10K to us on the one in a million chance it could even give her another week or make her feel even a little bit better in the little time she had left. We went into it with the attitude that it probably wasn't going to work and it gave her an opportunity to see another country before she died.

rocmg · 08-31-2009, 01:45 PM

i'm sorry your mum went so quickly asantiago... i'm dreading the day this disease takes my mum.

tmasters · 08-31-2009, 01:58 PM

In defense of Capt. Al: I didn't see where his anger was directed at the people trying stem cell therapy. It looks like he's angry at those who would take time and money from dying patients. These "doctors" are the worst kind of predators.

If somebody wants to try an experimental treatment they shouldn't be faulted. This can be a benefit to the PALS community at large. Those that participate in legitimate clinical trials are heroes and doing us all a favor.

Somebody trying stem cell therapy should base their decision on complete and honest data. The problem most often is that only the favorable results are reported. So we never get the complete story. The results are not published in scientific journals. I encourage anyone who tries stem cells to come back and tell us about their experiences good or bad. Too often this doesn't happen and we only hear of somebody off to China or somewhere about to try it, but rarely do we hear what happened. Thank you Shane for beginning this process in your case. I encourage you to keep us posted.

-Tom

MtPockets · 08-31-2009, 02:36 PM

I have retracted my statement that seems to have offended people.
I still stand by the facts as we have known them time and again here on the Forum. I wish this was not true, but there is currently no treatment, cure, etc. for ALS, that has proven to help, work or benefit anyone. There are several Medical Trials in progress that we all hope and pray will lead to a major break through.

If my over zealous attitude of trying to defend people from predatory practices has offended anyone, I apologize. I never meant to hurt anyone, destroy their HOPE, or cause you pain in any way shape or form. I only want the best for you, and wish you well in whatever method you chose to follow.
Please forgive me.