Stem Cells

[kcleejackson]

Anyone know where to get Compression socks? Do tube socks with extra elastic do the same?

 

[helsbells]

Ben you are a soldier - all the luck in the world to you and thank you so much for being "our reporter on the ground" - as awful as it was glad the outbound trip is behind you now! take very good care.
helsbells

 

[helsbells]

One thing I've been very confused about is who exactly is in charge of determining what mix of stem cells is best for CFS patients. My initial impression was that Cheney was mostly dictating this, but I've done a lot of digging and it turns out that it's more of a collaborative effort between Dr. Cheney and the owner of the clinic, and actually it seems that most if not all of the alteration happens within the clinic and later becomes reported to Cheney.

I think this is opposite from what most of us assumed was going on.

Regarding specifics, I've been informed that the clinic's owner and medical director currently thinks the threshold is at around 30mil expanded cord cells for clinical benefit. (Expanded means they have been previously expanded under culture conditions and frozen) In addition are "fresh" unexpanded cord cells which he thinks to have the potential to multiply once they're injected, so although the unexpanded cord cell count going into both the IV and intrathecal is about 500,000-1mil each, this can quickly become tens of millions. It is not clear just how much they replicate.

So with that said, this is the exact protocol that the clinic is quoting as the current "standard CFS protocol that all cheney patients are receiving":

3 infusions of 3 mil, 4.5 CD34 cord cells (all expanded)
1 infusion of 3 mil mesenchymal + 1 fresh cord of CD34 (~1 million unexpanded)
1 intrathecal injection of 3 mil mesenchymal + 1 fresh cord of CD34 (~1 million unexpanded)

So if you add it up, the technical grand total of stem cells we'll be getting is 30.5 million, but ~2 million are unexpanded so it has the potential to become far more.

Please understand that the protocols may change as the clinic learns what's best for us. Autism and MS patients have been getting intrathecals as well. Cheney is telling his patients it is optional for now because the long-term risks are too unknown, but since it is being recommended by the clinic to all the CFS patients applying now, the clinic must believe it is pretty safe.

Thanks a lot for this post m0joey - I have copied and pasted it so I don't lose it in this thread again

 

[slayadragon]

Originally Posted by Mr.Kite
I'm also wary of these reports of the cheney patients showing either no results, or results only lasting for 6 months before some relapse.

My continued hypothesis is that people who do well on stem cells (and other treatments) have somehow made their way into lower-mold/biotoxin environments, and that people who are living in bad buildings or in places with a lot of outdoor biotoxins (e.g. red tide) are more likely to not benefit or relapse.

I'm getting reasonably good at being able to figure out how much biotoxin exposure people are getting just from talking to them, and also may be able to visit people in person to get a definitive sense.

If anyone knows of someone who has gotten stem cell treatments (whether they have or have not benefited) who might be willing to talk to me about their experiences, please let me know.

I'd like to see if this hypothesis might have any validity.

Thanks!

Best, Lisa

 

[Sushi]

Anyone know where to get Compression socks? Do tube socks with extra elastic do the same?

I love these knee socks--they are mostly cotton, imported from Italy and make a huge difference for me if I need to be standing or walking for any length of time. They are so comfortable I forget I am wearing them. I found the sizing chart wrong though--needed a larger size--but the company happily sent a new pair and told me to keep the old ones. http://www.brightlifedirect.com/BRA...-Sock-20-25mmHg---Item#-113/product_info.html

Sushi

 

[mojoey]

As of right now now, Cheney is saying the best predictor of success is 1) having done his prep protocol and 2) age. I always thought the first was suspect, but I do think based on his ETM testing there is some validity to it. My friends who saw him recently haven't done any of his prep work but he OKed them to go for stem cells because of all the other treatments they've done beforehand.

He still thinks the youngest patients will have the most success (this number is changing as his sample size increases obviously), and I'm not sure how this jives with the mold hypothesis.

Regarding stem cell prep besides what Cheney advises: I know of two main stem-cell promoting supplements, Stem-Kine and Stemgevity. The first is promoted by Panama clinic's owner; the second by David Steenblock, another big stem cell proponent in California. I haven't taken either of these products, nor do I recommend either, but the clinic says patients can take Stem-Kine 12 weeks before tx and 2 months after. The clinic doesn't have anything to say about cell-signaling factors; that's all Cheney.

Also, here is Panama's response to question about infections in cord blood:
"There is always a chance of infection, minimum but there is. We do screen for Hepatitis A, B and C. We also screen for HIV, CMV, Chagas and HTLV."


This hasn't been discussed yet, but for all those that are thinking about going or planning on going, this is the org through which patients can organize fund-raising with tax-deductible donations: http://www.ntafund.org/

It doesn't work if you are paying for it yourself, but does if you have family members of friends contribute. For every $5000 you raise, then match with a $500 grant, and for every $10k they match with $1k, equaling a total of $1500 grant if you get the full 10k contribution. The funds raised can be used to cover not only treatment expenses but also transportation, housing, and other treatment-related expenses.

 

[kcleejackson]

I love these knee socks--they are mostly cotton, imported from Italy and make a huge difference for me if I need to be standing or walking for any length of time. They are so comfortable I forget I am wearing them. I found the sizing chart wrong though--needed a larger size--but the company happily sent a new pair and told me to keep the old ones. http://www.brightlifedirect.com/BRA...-Sock-20-25mmHg---Item#-113/product_info.html

Sushi

Thanks so much!

 

[undercover707]

Cell Dose?

When I talked to Dr. Tribaldos from the Panama Clinic 3 weeks ago she told me that there would be the following doses of stem cells:

3 infusions of 6million mesenchymal stem cells and 3 million CD34+ cord cells (all expanded)
1 infusion of one unexpanded cord blood unit.

Is it, because the protocol is changing so quickly, that we get different information on this? M0joey, when did you get your information?

So with that said, this is the exact protocol that the clinic is quoting as the current "standard CFS protocol that all cheney patients are receiving":

3 infusions of 3 mil, 4.5 CD34 cord cells (all expanded)
1 infusion of 3 mil mesenchymal + 1 fresh cord of CD34 (~1 million unexpanded)
1 intrathecal injection of 3 mil mesenchymal + 1 fresh cord of CD34 (~1 million unexpanded)

 

[mojoey]

I got this info about a week ago. You may want to call her and ask why the protocol changed. I'm not surprised that it did but would be interested in her reasoning too.

 

[foggyfroggy]

m0joey
Do you guys have enough people yet that are committed to the trip to actually do it? I'm deeeeeeeply interested!

 

[mojoey]

Yes there are multiple groups going. One is going for sure at the end of August. I'm planning on going in September.

 

[foggyfroggy]

Yes there are multiple groups going. One is going for sure at the end of August. I'm planning on going in September.

And is this at the discount rate? All of the groups? Have they put a limit on how many people may use that rate?

Thanks!

 

[Daffodil]

may i ask why you are considering stem cell therapy when antivirals might help?

what risks does stem cell therapy have?


thanks
sue

 

[mojoey]

There is no cap on how many people in each group, only that there be a minimum of 10. Yes this is at the discount rate of 10k

 

[hubcap_halo]

This hasn't been discussed yet, but for all those that are thinking about going or planning on going, this is the org through which patients can organize fund-raising with tax-deductible donations: http://www.ntafund.org/

It doesn't work if you are paying for it yourself, but does if you have family members of friends contribute. For every $5000 you raise, then match with a $500 grant, and for every $10k they match with $1k, equaling a total of $1500 grant if you get the full 10k contribution. The funds raised can be used to cover not only treatment expenses but also transportation, housing, and other treatment-related expenses.

mOjoey. Thanks again for bringing up this very important fundraising info. This is how Molly funded her stem cell treatment last November. She told a number of us that we need to get our funding together at least 6 weeks prior to treatment because the NTAF needs the lead time to cut the check with which you pay for your stem cell treatment.

 

[hubcap_halo]

m0joey
Do you guys have enough people yet that are committed to the trip to actually do it? I'm deeeeeeeply interested!

If you are deeeeeeeeeply interested in going (and deeeeeeeeeply is good!)--then you should PM Molly29 as she's coordinating the non-Cheney groups headed for Panama.
And btw, for all y'all interested, I can confirm that for her generous efforts, Molly's referral fee has her walking with a suitcase filled with $98,000 in Monopoly money per patient. Plus a shiny promotional thermos of hot jack Sh*t.

 

[jeffrez]

If you are deeeeeeeeeply interested in going (and deeeeeeeeeply is good!)--then you should PM Molly29 as she's coordinating the non-Cheney groups headed for Panama.
And btw, for all y'all interested, I can confirm that for her generous efforts, Molly's referral fee has her walking with a suitcase filled with $98,000 in Monopoly money per patient. Plus a shiny promotional thermos of hot jack Sh*t.

And you are "confirming" that how?

Not that it really matters. As long as the treatment is legitimate, I personally wouldn't care if they gave the whole 10 grand to a referrer. With Cheney it would be a slightly different story, as in that case there obviously would be a more formal, or professional/ethical conflict of interest. But with a "private"/non-medical provider individual, the only question in that case would be to what degree the necessity of paying a middleman (as it were - or middlewoman) was adding to the final cost that could instead be passed on to us. I just find it a little amusing that someone would claim to be "confirming" something for which they actually haven't confirmed anything. :Retro tongue:

For anyone wondering, I'm confirming that I actually ran a 10k today, after 20 laps in my friend's olympic pool before breakfast.

 

[hubcap_halo]

And you are "confirming" that how?

Not that it really matters. As long as the treatment is legitimate, I personally wouldn't care if they gave the whole 10 grand to a referrer. With Cheney it would be a slightly different story, as in that case there obviously would be a more formal, or professional/ethical conflict of interest. But with a "private"/non-medical provider individual, the only question in that case would be to what degree the necessity of paying a middleman (as it were - or middlewoman) was adding to the final cost that could instead be passed on to us. I just find it a little amusing that someone would claim to be "confirming" something for which they actually haven't confirmed anything. :Retro tongue:

For anyone wondering, I'm confirming that I actually ran a 10k today, after 20 laps in my friend's olympic pool before breakfast.

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 YOU’S”

To set the record straight:

I was present during the two phone calls as Molly negotiated your excellent group rate (~40% discount) with the heads of the Clinic.

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.)

 

[Rrrr]

i found this info in my ooooooold stem cells file. it is dated. not sure what website it came from. it is dated!!

Stem Cells Dev 2006 Feb;15(1):118-23.
Nutraceuticals Synergistically Promote Proliferation of Human Stem Cells.
(Dr. Pack's Summary #88)
Bickford, PC, et al.
Stem cells are cells that have the potential of development into various types of mature tissue cells for the purpose of tissue regeneration. Stem cells, called "progenitor cells", exist naturally in many adult organs and have potential for use in disease treatment. Most research has been focused on transplantation of stem cells from another organism; and very little research has been done on how to improve the effectiveness of natural human stem cells.
We do know there are natural chemicals, called cytokines, in animals to renew stem cells and move them along to development to replace cells, such as white blood cells and red blood cells.
Folate, vitamin B-12 and iron function in the development of stem cells into mature red blood cells. Recently, it was found that oleic acid (omega-9 fatty acid) and linolenic acid (an essential fatty acid) are important for stem cell maturation into well developed blood cells.
Vitamin D-3 stimulates the simple stem cells to mature into the differentiated cells of the immune system.
Carnosine is a chemical found in muscle that can rejuvenate cell lines and extend cell life span.
High antioxidant foods such as blueberries can reverse the cellular decline, which is usually seen with aging. Green tea (Camellia sinensis) also provides protection of cells against the natural decline of aging.
In this study the authors adding blueberry powder, green tea extract, catechins (a chemical in green tea,) carnosine and vitamin D-3 to cultures of human stem cells from bone marrow to see if the growth of stem cells was stimulated. A number of other nutrients were studied which did not show significant stem cell stimulation. The following is a listing of the percents of stimulation of growth of stem cells by various combinations:
35%-blueberry.
27%-carnosine.
15%-vitamin D-3.
36%-green tea.
62%-blueberry and vitamin D.
70%-blueberry and catechins.
83%-blueberry and carnosine.
56%-blueberry and green tea.
72%-blueberry, vitamin D-3 and green tea.
70%-blueberry, vitamin D-3, green tea and carnosine.
The authors report studies of the effect of natural compounds on the growth of stem cells in bone marrow. The studies were done in the laboratory and need to be confirmed in clinical studies in human patients.
CONCLUSION: Nutritional supplements can be used to promote the growth of human stem cells into mature cells in various organs and tissues of the body. The supplements work individually and work even better when used in combinations. The goal is to promote healing and tissue regeneration. A combination of blueberry extract and carnosine was especially effective in stimulating stem cells.

 

[Rrrr]

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 YOU’S”

To set the record straight:

I was present during the two phone calls as Molly negotiated your excellent group rate (~40% discount) with the heads of the Clinic.

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.)

i am very grateful to molly, and everyone who is doing all this prep work for us, including you, who are supporting molly. i hope to go in nov/dec/january.