Stem Cells

[kcleejackson]

You might want to contact Molly, the group rate is a significant reduction. A little too good, maybe - it's hard for me to believe the doctors are coming down that much. But if it does pan out, it might be in your price range.

As for all going together, apparently that's the way it has to be, according to Molly. I'd like to know what the possibility is of a second group going after the first. If they'll do the group rate once, I don't see why they wouldn't do it for a second group later. That would give people time to raise some money, and would also give some time for some expected XMRV data to come out, taking some of the pressure off about having to make an immediate decision.

I am in with contact with Molly. I am with you though I may have to wait for the second group, I have not been approved for my disability (been fighting for over a year for it) and until I get approved its out of the question financially. If however I am approved the next decision making time I will use all that money for the stem cell therapy and will be ready for take off. (at least mentally I will) Keep me as a possible option for both groups as of right now but it will most likely be a few months.

 

[kcleejackson]

Hey guys, quick update.

This is going to be brief (or at least I hope I can make it so) as I'm averaging 4-5 hours of sleep each night lately and my brain is seriously fried beyond belief especially after helping my old man make travel arrangements, planning dates, etc. on top of the poor sleep and general poor condition I'm in.

We have dates and flights reserved. We're booked to take a flight from Rochester, New York to Newark, New Jersey. Small plane. That's our layover. Then it's from there all the way to Panama. Bigger plane. Bought several seats so I could lay across them (to help with the POTS), as per just one of Molly's many excellent suggestions.
​

We depart June 26th. Less than a month away. Blood work will be taken on Monday the 28th. 4 infusions will be given consequetively throughout the rest of the work week (tues-fri). (Fun fact: The second infusion will occur on the 30th which just so happens to be my 22nd birthday. ) We will be staying the weekend and flying back on the 4th of July.

Oh, and another fun little tidbit that I literally just learned several days ago: I was informed that I tested positive for XMRV. Can't give any details or specifics on how I was tested at this moment but I thought I would at least share that bit of news anyway. It doesn't really have any impact on my decision to go to panama for stem cell treatment but it is certainly interesting to know, to say the least.

Hope I'm not leaving anything out. Feel free to ask me questions but keep in mind that, again, I need a LOT of rest so when I will be able to actually get around to answering may not be for a while (probably not until I get back and then some). Hope y'all understand. Besides, I will know much, much more once I've gone and actually had the treatment done. :Retro wink:

I promise that if this treatment goes well and I recover at least enough to be able to so, I will answer any and all questions anyone might have.

And lastly, I would just like to thank all the wonderful support and encouragement I've gotten from members of this board.

I will probably update at least one more time before I leave to Panama just to say I'm off and then once again as soon as I've gotten back, if I can, just to let y'all know I'm still (hopefully) alive.

Take care guys. Keep the hope alive.

Ben

Yah, I have been checking back to see how you are. I am physically in very similar conditions as you are. I cannot wait for an update on how the stem cells are working with you. I am only 25 myself so I feel like we are kinda in the same boat with the whole thing. You will be in my prayers and I understand you aren't able to check back often but hopefully you know we are all rooting you on!

 

[2bushes]

Hi,

I just want to wish you the best of luck.

A former western New Yorker.... Arcade,NY probably 65 miles or so from Rochester..or 30 miles from the world famous Attica prison. Well. and then there is Letchworth Park..Grand Canyon of the east not far away.

Please keep us posted when you can. I wish I were goping, keep the faith!

All of the best to you,

Margaret

 

[fairlight]

Hi Molly-I just sent you a PM about seeing if I can go on the trip for stem cell treatment. I hope you get my message!

 

[garcia]

Interesting article about stem cell therapy in the latest issue of Scientific American. But it is about reprogramming one's own cells to become stem cells. Unfortunately the technology seems to be a few years off right now.

 

[Rita]

In Spain, they are searching on uterine steem cells, that seems promising
http://www.ficemu.org/index.php?idIdioma=EN
They are receiving a lot of requests to apply to CFS and FM, but have no enough funds, they are in the beginning of the research.

 

[bluebonnet]

Stem Cell Clinic in Costa Rica is forced to close....

http://www.reuters.com/article/idUS...ews+(News+/+US+/+Science)&utm_content=Twitter

 

[Chris]

Hi, I am still here! I agree with Mr. Kite about the probable interference of various agencies, very possibly the FDA, working on behalf of the various companies working on elaborate stem cell varieties (see Scientific American for this May).
My experience with Stem-Kine so far has been a bit mixed up by my continuing experiments with Artesunate--which I have stopped again. I do think there have been minor changes, though; my blood pressure has gone down a bit, and perhaps more interestingly my heart rate has also dropped a bit; before all this stuff began, I have always had a low heart rate (usually in the 50-55 region); it crept up under CFS ( I guess responding to reduced stroke volume, trying to keep some blood flowing through my body); now it is coming down a bit again. I cannot claim that my exercise ability has improved--but I feel a bit better generally. Could it be just the substantial Vit D component working? In any case, I am going to order some more this morning, just in case Mr. Kite's concern is realized--and I think it is a very realistic concern.
I hope the Panama clinic remains open, but... There is still the German clinic, which does sound good on the web, and other possibilities further afield.
Best wishes, Chris.

 

[fairlight]

Mr. Kate-do you know the date of the article in Reuters, that you posted a link to, about the stem cell institute in Costa ROca being shut down? Thanks.

 

[shannah]

The article says it will shut down this Friday.

http://www.reuters.com/article/idUS...ews+(News+/+US+/+Science)&utm_content=Twitter

(Reuters) - Costa Rica has ordered the country's largest stem cell clinic to stop offering treatment, saying there is no proof that it is effective, the country's health minister said on Wednesday.

Science

About 400 patients, mostly foreigners from the United States, have been treated at the Institute of Cellular Medicine in San Jose for multiple sclerosis, arthritis, spinal injuries and other illnesses.

"This isn't allowed in any serious country in the world," Health Minister Maria Luisa Avila said in a telephone interview.

The Health Ministry several weeks ago ordered the clinic, owned by Arizona entrepreneur Neil Riordan, to stop performing the treatment, in which stem cells extracted from the patients are reinjected into their bodies.

The ministry said the clinic has a permit to store the stem cells extracted from patients' own fat tissue, bone marrow and donated umbilical cords but is not authorized to perform the treatment.

Sylvia Molina, an assistant at the clinic, said it would shut its doors on Friday.

Neither Riordan nor the clinic's medical director, Fabio Solano, were immediately available for comment.

Riordan's team uses adult stem cells, which can be found throughout the body.

These master cells of the body give rise to many different tissues and blood cells and are standard treatments for leukemia and a few other genetic diseases.

They are different from embryonic stem cells, taken from human embryos. But Riordan's treatment approach is considered experimental by most experts and the International Society of Stem Cell research has warned against so-called stem cell tourism.

Doctors at Riordan's clinic have said that they have seen excellent results from the procedure, but ministry officials said that there is no proof that the treatments work.

The stem cell treatments at the Costa Rica institute cost between $5,000 and $30,000.

China, Thailand and Mexico also offer stem cell treatments, but Costa Rica's stability, modern tourism infrastructure and proximity to the United States had made it a preferred destination for many patients.

Riordan has a U.S. company called Aidan Products that sells, among other things, a nutritional supplement that his team says can stimulate the body's production of blood stem cells.

He also operates a stem cell clinic in Panama and is chairman of Arizona-based Medistem Inc.

(Reporting by Leslie Josephs; Editing by Maggie Fox and Cynthia Osterman)

 

[InvertedTree]

Has anybody heard anything about the clinic in Panama closing?

 

[bluebonnet]

Has anybody heard anything about the clinic in Panama closing?

According to Cheney, it is still operational.

 

[SaraM]

Just heard on ABC news that an HIV patient is for the first time HIV free with the help of stem cells donated by some one who is HIV immune. This was done by a German doctor named Gut Huter in SF in California Institute for Regenerative Medicine.

 

[Misfit Toy]

This is all so fascinating. I have spent practically 4 hours going over all of these posts. I am beat. I have several questions and thoughts. One of them is; how can one's own blood make stem cells that are "ok." I mean, it just seems weird to be so sick and to use my blood to make stem cells? Not sure about that one.

I want to find out more and hear from more people. It's so much money, as we all know. If I am going to put out that much money and I am sure I am speaking for many of us, it better work for years...not weeks or months. I have read that Molly is doing well. I would love to hear more stories and even stories of those who are not doing so well. What are the variables?

 

[Misfit Toy]

The "water skiiing woman." Love that. Yes mr. Kite...I need to read a lot more on how WELL everyone is doing. Too much money to spend. Going to spend it wisely if I will even spend it. If I had this done and had negative results, I would spiral downwards knowing I tried something so expensive that didn't work. It's not like a couple thousand, it's up there in the digits. I am within the window of people responding to it. I am 39. But not much longer. Oh well!

 

[mojoey]

I think it bears remembering that many people who do these treatments or see Cheney are not part of the forums. Plus, look at the flak that Molly has gotten as a result of posting now: she's been called a shill, a fraud, and this was before she posted about the group discount!! Now she's being accosted for taking kickbacks from the stem cell clinic. The story is familiar and it's always those who try to help the most that end up getting stoned by the very patients they're trying to help---and you wonder why so few post about their recoveries.

Personally I can't relate at all to the money concern, and yes this is coming from someone that has nearly bankrupted my family due to medical expenses. It is because I don't want to continue spending anywhere from 3-6x the cost of stem cells annually on medical expenses that I would take out a loan if I had to in order to get this done. Call me insensitive but I think a tax-deductible 10k is a dirt cheap bargain for 30-50% improvement. How much do you guys spend on supplements a year? I know I spent at least 6-7k...that's the cost of stem cells if a family member or friend in a high tax bracket writes it off for you. I'm sure most of us spend 10k a year on seeing doctors, supplements, home care, and whatever price you want to put on living the plot of Groundhog Day 365 consecutive days a year.

Of course, I don't think anyone should do this without doing their own research making an informed decision. Experimental treatments should not be undertaken by the desperate or the lazy. Molly sounds like a stem cell expert when you talk to her because she spent a year in the trenches researching, calling the doctors at the clinic, and hashing out the calculated decision to go. I strongly believe that's what each of us have to to do to buffer a catastrophic letdown if we fail to recover or improve significantly.

 

[jeffrez]

I think it bears remembering that many people who do these treatments or see Cheney are not part of the forums. Plus, look at the flak that Molly has gotten as a result of posting now: she's been called a shill, a fraud, and this was before she posted about the group discount!! Now she's being accosted for taking kickbacks from the stem cell clinic.

The story is familiar and it's always those who try to help the most that end up getting stoned by the very patients they're trying to help---and you wonder why so few post about their recoveries. Maybe we should look inside ourselves before we castigate others for not doing more.

You think people should just hand over tens of thousands of dollars to (no offense intended) almost complete strangers without having all the facts?

I'll PM you my mailing address -- you can send me some, I'll be glad to take it.

And no one is "stoning" anyone. I think you need to dial down the rhetoric a few notches. ;-)

I think we all know that not all of cheney's patients are members of these forums. The point is, who has heard from them *anywhere?* Do you have a link to where cheney's patients who got the treatment are discussing their results? Please post it if you have one, I'd be interested to read more reports.

Of course, I don't think anyone should do this without doing their own research making an informed decision. This is not for the desperate or the lazy. Molly sounds like a stem cell expert when you talk to her because she spent a year in the trenches researching, calling the doctors at the clinic, and hashing out the calculated decision to go. I strongly believe that's what each of us have to to do to buffer a catastrophic letdown if we fail to recover or improve significantly, but to avoid a difficult decision altogether and blame it on the pricetag (which any rational mind would consider a steal) is just a diversion of responsibility.

I think that's what some of us are trying to do. And you seem to be castigating us for it.

 

[mojoey]

Hey Mr.Kite,

I'll agree. I think it's a shame that Cheney has a gag order on his patients. Most of my facts have been from the clinic and through Molly's conversations with the top doctors of the clinic, but I do have a list of clinical markers that have improved in Cheney patients after treatment, including conversion from XMRV-pos to neg, and I just don't see any other single treatment at this point causing the same reversal in those markers (which I described in a post earlier in this thread).

You wouldn't be paying money to absolute strangers (the clinic) if you talked with them first. It is incumbent on you to do that, not me to send you the facts that I dug out myself. When you have a total of 38 CFS patients that have been treated at a clinic (Panama, in this case), it will be incredibly hard to track them down for testimonials. However, out of those, only 2 have been total non-responders and I believe the rest have improved anywhere from 30-50% from an average baseline of 30 out of 100. This means there are many patients are able to work full-time with varying difficulty.

I think some would absolutely agree that Molly has been verbally stoned here and through backchannels. You wonder why she doesn't post about how she's doing anymore on the forum whereas she was so willing before.

Maybe I could have toned down the rhetoric a bit, but my point stands: mathematically compared with the amounts that we currently spend on useless supplements and doctor visits that have gotten us nowhere, the price tag is a bargain.

 

[jeffrez]

Hey Mr.Kite,

I'll agree. I think it's a shame that Cheney has a gag order on his patients. Most of my facts have been from the clinic and through Molly's conversations with the top doctors of the clinic, but I do have a list of clinical markers that have improved in Cheney patients after treatment, and I just don't see any other single treatment at this point causing the same reversal in those markers (which I described in a post earlier in this thread).

You wouldn't be paying money to absolute strangers (the clinic) if you talked with them first. It is incumbent on you to do that, not me to send you the facts that I dug out myself. When you have a total of 38 CFS patients that have been treated at a clinic (Panama, in this case), it will be incredibly hard to track them down for testimonials. However, out of those, only 2 have been total non-responders and I believe the rest have improved anywhere from 30-50% from an average baseline of 30 out of 100. This means there are many patients are able to work full-time with varying difficulty.

I think some would absolutely agree that Molly has been verbally stoned here and through backchannels. You wonder why she doesn't post about how she's doing anymore on the forum whereas she was so willing before.

Maybe I could have toned down the rhetoric a bit, but my point stands: mathematically compared with the amounts that we currently spend on useless supplements and doctor visits that have gotten us nowhere, the price tag is a bargain.

"Verbally stoned." I really don't know what that means. People just have questions about a therapy that there aren't a lot of firsthand details about, only mostly hearsay. How is that "stoning" anyone?

I maintain the right to ask any and all questions I have about any aspect of this therapy, for which we are being asked to shell out significant cash money. I won't be browbeaten into not asking questions, so if you don't like to read any questions, I'm sorry in advance to be hurting your feelings.

 

[mojoey]

No feel free to ask questions. I'm just saying your apparent wits could go a lot further by talking to the clinic doctors yourself: I don't have the energy to be a conduit.

The stoning has nothing to do with question-asking, but rather the prior suggestions that Molly is a shill, not a real patient, getting kickbacks etc.

Hey leave my feelings out of this. They don't like mixing with highbrow types