Stem Cells

[jeffrez]

I can confirm because
1. Saw the multicolored monopoly bills spilling out of the suitcase.
2. I got the thermos and it's monogramed "Mr. Kite" -- do you want it?

But as long as your asking, here's the full story:
--------------------------------------------------------

MOLLY'S PAYMENT -- CYNICISM, NAME CALLING, QUESTIONED MOTIVES, AND FAR TOO FEW THANK YOUS

To set the record straight:

I eavesdropped via phone as Molly negotiated your excellent group rate (~40% discount).

Never on a board have I seen so many intelligent, helpful and well researched posts juxtaposed with so
much cynicism, ingratitude and entitlement (from a vocal few anyway).

For the countless hours Molly has spent fielding our phone calls (questions, tragic stories, requests), negotiating a dream price,
dealing with the clinic....I've watched my respected new friend exert maximum effort simply because she wants to help.

And what's more, she can. She's a savvy businesswoman and wouldn't need kickbacks even if they existed.
And they don't. Call the clinic and ask Melisa about referral fees. She (and her colleagues) will laugh.

Melisa Cristaldi
Patient Relationship Coordinator
Stem Cell Institute
Panama City, Panama
International Phone (507) 301-0210
International Phone Fax (507) 204-8531
US Toll Free 1-954-636-1126
US or Canada 1-954-636-5117
www.cellmedicine.com

OR if you're going to Panama, ask the Medical Director Dr. Paz about referral fees.

If this is how we treat healthies, no wonder most of them leave the boards.
But Molly chose to stay, cultivate and offer us an amazing gift even though every step
of the way we kick the tires, say "it's too good to be true, " question her motives, call her "a shill."

No wonder she doesn't come round her much.

I am SO LUCKY that out of sheer kindness Molly busted her backside to organize a group
and negotiate a price from something that would be totally out of my range to something
that I can somehow beg and borrow to make happen.

For the final time. MOLLY SHILLS FOR NO ONE -- BUT YOU. With no reward except our
gratitude and in my opinion there has been far to little.

THANK YOU MOLLY.
(and I'm done with this banter. Goodnight.)

Like I said, I don't really care. As long as the treatment is legitimate, I don't care who gets what. What would I contact a clinic for anyway, when the person knows the owner?

I do resent all the guilt tripping, however. I wasn't exactly born yesterday. When things don't add up, they don't add up. It's not my fault they don't add up. Because I have news for you: no one does anything "just because they want to help." It doesn't exist. I've never seen that exist in 12+ years of being sick, ever. And probably even less than never in all the years before that. I know people who have "recovered" (functionally) from CFS/MCS who can't be bothered now even to mail someone an extra bottle of supplements. So you might as well ask me to believe in unicorns as to ask me to believe some of things having to do with this deal.

Or maybe it's just this thyroid nodule (or maybe by now a lymphoma) digging into my esophagus that's making me cranky. :-o Either way, I always try to remember Ben Franklin's advice: "believe none of what you hear, and only half of what you see." So I'll believe it when I see it - maybe. ;-) Regardless, like I said it actually doesn't matter to me one way or another. I don't really care. Just don't insult what little intelligence I have left and bullshit me. That's what I really find offensive. It just adds insult to injury.

 

[dhearns90]

I can confirm because


• MOLLY'S PAYMENT -- CYNICISM, NAME CALLING, QUESTIONED MOTIVES, AND FAR TOO FEW “THANK YOU’S”

If this is how we treat healthies, no wonder most of them leave the boards.
But Molly chose to stay, cultivate and offer us an amazing gift even though every step
of the way we kick the tires, say "it's too good to be true, " question her motives, call her "a shill."

No wonder she doesn't come round her much.

I am SO LUCKY that out of sheer kindness Molly busted her backside to organize a group
and negotiate a price from something that would be totally out of my range to something
that I can somehow beg and borrow to make happen.

For the final time. MOLLY SHILLS FOR NO ONE -- BUT YOU. With no reward except our
gratitude and in my opinion there has been far to little.

THANK YOU MOLLY.
(and I'm done with this banter. Goodnight.)

I think you may not understand how many people are scammed by fraudulent stem cell clinics each year. Do some research on a company called Medra. They get clients by posting what appear to be fake testimonials from former patients-turned-employees on various message boards. There are dozens, maybe hundreds of companies just like Medra who use the same tactics to find desperate patients. And it works, the companies make millions.

I'm not trying to equate the Panama clinic with Medra, nor Molly to one of these patients-turned-employees, but my point is that we have the right to be skeptical and need to question motives. No doubt it is unfortunate for people like Molly (who I believe is sincere) who have to endure this, but that's how it is. Too many bad apples out there. I haven't seen any posts in this thread that were cruel or accused her of anything immoral. Skepticism should be welcomed in my opinion.

 

[soulfeast]

Sheesh. A lot of well intended but irrelevant talk filling up the void.

We really just have to wait to see how people do. We can speculate endlessly.

Completely agree with Jenbooks. Let's keep this thread focused.

I've been trying to confirm that the protocol details that Panama has given us is the protocol that Cheney patients are getting. Once I do so, I'll post the details.

I would suggest a separate thread for planning the Panama info and another for stem cell talk. That said. I deleted my posts.

 

[Rockt]

I would suggest a separate thread for planning the Panama info and another for stem cell talk. That said. I deleted my posts.

Or, at least, let's stop the personal attacks. Everyone here is interested in getting better. We're all different, we all have our own opinions, let's respect that and not rush to respond argumentatively to posts. If you don't agree with a post, let it go, don't attack it. These forums are to promote discussion, hopefully leading to relief from this awful disease. Some people are more trusting, others less so, (possibly from bad experience(s) ). Let's try to remember that and get back to the issue - Stem Cell Treatment.

OK, here's an opinion I've been thinking about: Since the Panama clinic is doing intrathecal injections, this leads me to believe more and more in their legitimacy - this is the spinal chord afterall. I can't see them risking paralysis. Yeah, the regular IV's could be saline, (I don't think they are), but couldn't an intrathecal injection of saline wreak havic with a person, like, instantly? We're talking central nervous system here. I just don't think they'd risk it, especially a clinic that has been investigated and used by someone like Dr. Cheney, (possibly not perfect, but a leader and champion for our cause), to some degree of success.

And with Mojoey's (excellent) reporting of the changing protocols, it seems like they are really trying to find out what works best in order to make patients better.

Again this is just my opinion. Let's keep up the vigilant fact-finding and search for proof - we want to be sure, we NEED to be comfortable. For some, that requires more info than for others. But let's try to stop the personal, unproductive attacks.

 

[jenbooks]

Re: the questions, skepticism, etc. It can't be resolved online anyway. That's why it's sound and fury amounting to nothing.

If you want to know if a clinic is legitimate, the first thing you have to do is your own due diligence and call and speak to the doctors and nurses, ask your own questions to your own satisfaction. Ask for studies. Ask to speak to patients. Ask about what the doctors did previously. Ask for credentials. Ask if you can have a sample tested. Etc.

Ask whatever you need to ask to satisfy yourself that this is a place worth considering for treatment.

Spewing out posts in the intrathecal space of the internet is just self-satisfying. No answer will suffice. A person could post lies.

You all have too much time on your hands, on the one hand, and too little on the other. Go do your research...or scroll on by.

 

[soulfeast]

What do you all want on this thread? Panama treatment info, talk? Link and talk about stem cells in general? The subject line just says stem cells. The posts I deleted were links.. info about stem cells in general.

Thanks.

 

[Rrrr]

I would suggest a separate thread for planning the Panama info and another for stem cell talk. That said. I deleted my posts.

gosh, i wish you had not deleted all the posts on this thread that were articles and such.

 

[Rrrr]

What do you all want on this thread? Panama treatment info, talk? Link and talk about stem cells in general? The subject line just says stem cells. The posts I deleted were links.. info about stem cells in general.

Thanks.

gosh, i wish you had not deleted all the links to the articles on stem cells. that is valuable info! if you can email me privately with those links, i'd appreciate it.

 

[Mark K]

I dont post much but my 2cents here, one thing I noticed is that there is no group like cfs ppl wheteher is MS or Lupus etc that seems to never agree and often attacks each other and always find some "apples that stir the apple pie" to the point that blog becomes unfriendly etc. no wonder no one treat us seriously! "Its in your head"

 

[mojoey]

Seeing as how this thread was started by someone curious about stem cells in panama and the now-closed CR clinic as well as the rest of cheney's protocol, I think the thread should be limited to discussions about the actual stem cell treatment and outcomes of people getting adult stem cells from panama, as well as discussions on the rest of cheney's protocol..

Skepticism about the legitimacy of the treatment and the legitimacy of people organizing group discounts and advocating for stem cells seem to have a logical place in this discussion, but it has been beaten to a dead horse by now and further discussion in that region should move to a new thread. Again that is just my opinion.

 

[Rrrr]

joey wrote: "Skepticism about the legitimacy of the treatment and the legitimacy of people organizing group discounts and advocating for stem cells seem to have a logical place in this discussion, but it has been beaten to a dead horse by now and further discussion in that region should move to a new thread. Again that is just my opinion."

YES!!!!!

 

[jeffrez]

I dont post much but my 2cents here, one thing I noticed is that there is no group like cfs ppl wheteher is MS or Lupus etc that seems to never agree and often attacks each other and always find some "apples that stir the apple pie" to the point that blog becomes unfriendly etc. no wonder no one treat us seriously! "Its in your head"

Well, if someone like me or someone else wants to say something, but all of you don't want us to say it and you keep posting passive aggressive posts telling us not to, then who exactly is being unfriendly to whom? It seems rather that you're the ones being unfriendly to me, doesn't it?

 

[Rrrr]

By the way, I had a good talk with Molly today. And for those who were asking about MCS (chemical sensitivities) issues, I was very interested to hear that Molly's own MCS has dramatically reduced since the treatment.

In terms of making sure the hotel is chemical free, i got the impression that we are sort of on our own with that, just like in the US. you can ask the hotel to do this or that, to not put you in a room near the laundry, etc, but like in the US, you never know what you will get.

So our on-the-ground reporters who are there now or going in August can let us know what they find from the specific hotels they stay out. Please keep your eyes AND NOSES wide open for us, to give us a full report.

I forgot to ask her if she was a drug-hyper-sensitive person before going...

Rrrr

 

[soulfeast]

gosh, i wish you had not deleted all the posts on this thread that were articles and such.

I'm sorry. I should have kept them up until it was clarified what the thread is about. Do we post general stem cell info links here.. can this tread be renamed to reflect its speciic content if only about Panama experiences and planning? It would seem logical that the threads be separated into a general info thread, specific Panama or stem cell treatment thread, discussion and opinion about clinics etc.... ??

I saved some. Im not sure how relevant.. one about menstrual blood stem cells, one about stem cells during preganancy that transfer from child to mother.. along with other cells that can potentially cause autoimmunity.. ??

 

[Rrrr]

how about someone ask an administrator to re-title this thread: Stem Cell Treatment in Central America

and then soutfeast can start a NEW thread and call it: Stem Cell Articles and General Discussion

do i hear a thumbs up?

 

[gapsych]

FYI

I thought it would not hurt to repost the following sites for informational purposes.

The BMJ article has a website for evaluating clinics

http://www.closerlookatstemcells.org...m?Section=Home

http://www.bmj.com/cgi/content/extra.../jun18_1/c3271

Here is a "Sixty Minutes" episode that talks about stem cell therapy.

http://www.cbsnews.com/video/watch/?...in;contentBody

http://www.cbsnews.com/video/watch/?...in;contentBody

http://www.cbsnews.com/video/watch/?...in;contentBody

http://www.cbsnews.com/video/watch/?...in;contentBody

All of these videos are downloadable.

 

[mojoey]

First of all Gap, I'm glad you found your way over to this stem cells for CFS thread. I was going to tell you about it but then I remembered that you don't have CFS!

Secondly you've already posted these links earlier. Good luck with real science finding a cure for amnesia.

Lastly, please don't come into a forum where certain members may not have witnessed your true colors on other forums and masquerade as someone with intentions solely of spreading awareness about the dangers of stem cells. If you have anything to say about me and my conflict of interests, come out and say it as you would on Prohealth. Please don't adjust your behavior for the sake of easing your way into this forum. From what I've witnessed so far I believe the members here all have minds of their own and can be their own judge of veracity of information.

To get things started, you know you've hit the big time when patients across the pond have an entire discussion about someone they've never met or talked to. Like I said, I'll let viewers here be their own judge. It'll save you time and energy PMing them warnings about me and my financial interests. http://www.lymeneteurope.org/forum/viewtopic.php?f=12&t=3072&start=0&sid=37b9d1c4adbab5e90d784212a6344356
By the way, this PM recipient was given permission to pass on the message. I don't believe gapsych accounted for the possibility that he/she might pass along the message to me.

This is my last post not unrelated to the main focus of this thread. I agree with Rrrr that an admin should move these unrelated posts into a separate thread.

 

[Michael Dessin]

Its soo funny how people like gapsych and her cohort tell us we must have scientific proof to validate illness or appropriate treatments when the CDC is the largest organization conducting this type of validation. The same organization that has covered up the truth in regard to CFS for how many years???

Need I say more?

 

[mojoey]

Well mike, you forgot to mention that Gap has a record of being the only CFS patient to defend the CDC. Oh wait, my amnesia, she doesn't have CFS.

"The CDC has been put in a no win situation. They are a government bureaucracy, mistakes are made. It does not mean a conspiracy." - gapsych http://www.prohealth.com/me-cfs/blog/boardDetail.cfm?id=1396726

 

[Michael Dessin]

Oh yea thats Gapsych, the same person who reported my doc to the medical board for not using FDA approved treatments. The same doc who saved my life and keeps my ME in remission.

Thanks for keeping us so well informed Gapsych.