Stem Cells

[oerganix]

I am currently talking with a company in Dallas that does stem cell treatments (very hush hush though due to US law) and Molly is helping evaluate their protocol. So we'll keep this in mind, perhaps looking for a Sugar Daddy or trying to negotiate a group rate. The treatment cost and transportation cost is lower than CR or Panama but hotel and meals in the US are higher and I think the time involved is somewhat longer.

Fascinating! Keep us posted, and thanks muchos!

 

[alice1]

JanisB I'm in so keep that in mind!!!!

 

[Molly29]

Thanks Patrick!

For SaraM.
I know from patients that have gone for treatment that the Panama and Costa Rica Clinics are directly affiliated. I don't know why only Panama City comes up
under "Locations." A good reason to contact them and segue into asking lots of other questions maybe.

Yep Patrick...and thank you.
You are correct...the main and first clinic is in Costa Rica...the 2nd one is in Panama. Panama probably comes up because that is where alot of the new patients go. I went to CR b/c my mentor and friend had been to CR 4 times and we met there along with 50 plus other returning patients.

I am more than happy to field anymore questions.

As for a bank heist....can you see someone accidentally falling asleep in the "Getaway Car" LOL!!! :tear:
I can try to find out what a group rate might be. My friend is very tight with the appropriate people.

I am trying to answer some of the other posted questions....

Molly

 

[Molly29]

Supplements to Enhance Stem Cells...

Has anyone tried supplements that supposedly enhance stem cells? Do they work?
I saw one from "stemtech" http://mrfire.stemtechbiz.com/Default_US_EN.aspx
I have not tried it, but would like to hear what others think of such supps.
Thanks

Yes there are great supplements for enhancing Stem cells, the Costa Rica and Panamanian clinic uses a product developed by one of their guys, its called Stem Kine.
I take it. It works....the ingredients are mostly Vit D3. It is their product, they developed specifically for Stem cells...
http://www.stem-kine.com/index.html
Here is the link...

Molly

 

[Molly29]

Mr. Kite

So Molly - do I understand correctly that one "procedure" can include multiple infusions spread out over hours/days or even a few weeks? Do they charge by the infusion, with the option of having fewer or more infusions, or is a treatment plan developed beforehand, with only one charge for the entire treatment?

I just want to echo everyone else and say thanks again for all this first-hand information, it is really invaluable.

Mr. Kite,
No worries....if I can help I will!

Yes one "trip" to CR or Panama WILL include multiple infusions. A treatment plan is developed beforehand, with only one charge for the entire treatment.

Usually you will go in the morning around 9, 10 or 11am (depends on how busy they are) and have 2 IV pushes. Takes about 30 minutes, starting the port for the IV push of CD34+ and MSC. So 2 different syringes. Painless. My protocol was for one week. You can do a longer treatment spread out over 2 weeks if you want too. I think even a month is available too.

My understanding is that the protocol is tailored to a certain degree but it is consistant with the treatment of ANYONE with CFS/ME that any Dr. would send to Costa Rica or Panama.

I am not one of Cheneys patients. But from Mark K's post and as I had heard they have been treating CFS/ME for a long time. So many people and patients have gone to CR to recieve treatment for this illness and many many other illness'.

Hope this helps!

Molly

 

[gracenote]

Molly,

Is anyone documenting any of this? The patients' symptoms, length of illness, lab results beforehand, and then their response to the stem cells afterwards in months and then year(s) followup? It doesn't need to be a formal study, but I would love to see more concrete information.

 

[Sushi]

As for a bank heist....can you see someone accidentally falling asleep in the "Getaway Car" LOL!!! :tear:
Molly

Here is some good news about the "bank heist"-- we have a symptom which can actually help us here--about half of us have lost our fingerprints--either partially or completely. Dr. Cheney once had a police forensic guy try to fingerprint some of his patients--he couldn't do it! :victory:

Mine are fading...get a magnifying glass and check yours!

Sushi

 

[Molly29]

Gracenote...

Molly,

Is anyone documenting any of this? The patients' symptoms, length of illness, lab results beforehand, and then their response to the stem cells afterwards in months and then year(s) followup? It doesn't need to be a formal study, but I would love to see more concrete information.

Hello Gracenote!

Happy to see you...I can't speak for anyone else, but I am documenting this for me...and the Clinics in both CR and Panama keep in contact regularly via email for the next 5 years plus. I had to sign off on that so I would think and (HOPE) they are compiling medical information. I don't think that would be available to us though. They can give more stats now maybe? I asked alot of questions and while keeping the privacy of patients they still allowed my curiousity to be satisfied. My Dr. from CR asked some great questions as soon as I got home, and has continued to follow up ALOT! (they are very caring and want you to get well). As for Cheney I think he would be the only one with hard facts in the US and the other Dr.... M0joey mentioned, GMA, GORDON MEDICAL ASSOCIATES. I too, was very interested in concrete information. Much of that was either validated through my research or through the success had from other patients in CR with CFS/ME and the long list of illness' they treat...at least enough for me to make a solid game plan.
Hope that helps....
Molly

 

[Molly29]

Bank Heist Options?

Here is some good news about the "bank heist"-- we have a symptom which can actually help us here--about half of us have lost our fingerprints--either partially or completely. Dr. Cheney once had a police forensic guy try to fingerprint some of his patients--he couldn't do it! :victory:

Mine are fading...get a magnifying glass and check yours!

Sushi

Sushi
We are SO blessed to have you! It's so funny to see you point out "a symptom that ACTUALLY helps us!" LOL! I remember I read this somewhere! Hmmmm....what to do next?
Best!

Molly

 

[dannybex]

I would definitely be interested in any kind of group rate or similar deals we can get. Count me in. All the better if it's in the US, as long as it's not overall significantly higher costs.

Me three. Would need to know how much this would cost...sounds like it's astronomical, but perhaps not?

Thanks Molly and all for the info!

d.

p.s. Wasn't someone in the New Day group taking some sort of oral stem cells -- under the tongue?

 

[mojoey]

Hey Danny,

Yes someone did, but those are porcine stem cells.

 

[gracenote]

As for Cheney I think he would be the only one with hard facts in the US and the other Dr.... M0joey mentioned, GMA, GORDON MEDICAL ASSOCIATES. I too, was very interested in concrete information.

I asked Dr. Eric Gordon directly if he was taking a group of patients for stem cell treatments. He said he is not. I don't know where that information came from.

 

[maryb]

Does anyone know if Stemtech is the same as StemEnhance?
BTW - group rates? count me in!

 

[alice1]

Im in for group rates.I looked on the Dallas Stem Cell Research site and they're telling people where they should go.I think I'll fill out the form and see what they say.

 

[cfs since 1998]

Does anyone know if Stemtech is the same as StemEnhance?
BTW - group rates? count me in!

No. StemEnhance is made from algae. StemTech contains Vitamin D, Beta Glucan, and Ellagic Acid. I am not convinced that taking "stem cell supplements" is a good thing...what if you are depleting the amount of stells in reserve for future use? I don't know but I would take Stemtech over StemEnhance. The particular type of algae StemEnhance uses hasn't been proven safe. But you could also take the ingredients in StemTech separately.

 

[mojoey]

Hi gracenote

I just got an update from that patient. She said GMA was initially planning on sending patients down, but instead had decided to try a different process to make it more affordable for patients. Blood is drawn at GMA, shipped overnight to a lab "supposedly in LA area," processed at the lab over the weekend where a patient's own blood cells are separated, stimulated, and overnight shipped back to GMA for reinfusion.

Just trying to shed light on what some of the top docs are thinking/planning with regards to SC, but this should be regarded as nothing more than brainstorm at this point.

 

[maryb]

No. StemEnhance is made from algae. StemTech contains Vitamin D, Beta Glucan, and Ellagic Acid. I am not convinced that taking "stem cell supplements" is a good thing...what if you are depleting the amount of stells in reserve for future use? I don't know but I would take Stemtech over StemEnhance. The particular type of algae StemEnhance uses hasn't been proven safe. But you could also take the ingredients in StemTech separately.

Thanks I'll check it out. I'm in a bit of a running around (in my head) like a headless chicken mode at the moment with which way to go, I need to take some time out to think about things. The beauty and the beast of this forum!! thanks once again.

 

[cfs since 1998]

Hi cfs since 1998

I just got an update from that patient. She said GMA was initially planning on sending patients down

I think you were replying to the wrong person... I'm not sure what you are talking about.

No. StemEnhance is made from algae. StemTech contains Vitamin D, Beta Glucan, and Ellagic Acid. I am not convinced that taking "stem cell supplements" is a good thing...what if you are depleting the amount of stells in reserve for future use? I don't know but I would take Stemtech over StemEnhance. The particular type of algae StemEnhance uses hasn't been proven safe. But you could also take the ingredients in StemTech separately.

Thanks I'll check it out. I'm in a bit of a running around (in my head) like a headless chicken mode at the moment with which way to go, I need to take some time out to think about things. The beauty and the beast of this forum!! thanks once again.

I or both of us got confused in my last post. You asked what the difference between StemEnhance and StemTech were. StemTech is the name of the company that makes StemEnhance. That is the algae, specifically aphanizomenon flos-aquae. Stem-Kine is the one with Vitamin D, Beta Glucan, and Ellagic acid.

Is this a legitimate concern (i.e., one based on research), that perhaps you have read or heard about somewhere, or just a reasonable speculation based on the fact that we don't know a lot about these therapies yet?

Well, it is a concern based on a lack of research, not a concern based on research.

I thought these products just stimulated your body to produce more stem cells, not that they depleted a given amount. I notice, however, like on the Stem-Kine testimonials page, almost no testimonial said much past their experience after 2-3 months. Maybe that's the point at which you start getting depleted (if that does in fact happen)?

I don't think anyone knows the answers to these questions, and that is the problem. It is a leap of logic to give a healthy person some supplement, see a jump in their circulating stem cells, and then conclude that this supplement is an alternative to a cord blood stem cell transplant or infusion. I think it's safe to say that a testimonial on a manufacturer's website is useless anyway. Here are some concerns from the link I posted when this topic was brought up:

* Is the release of bone marrow stem cells into the blood stream positive or a negative? Will it increase the risk of cancer development? Will it adversely affect the number of mature red cells, white cells, and platelets?
* Does the observed release of bone marrow stem cells after consumption of blue green algae mean that the algae is beneficial, or is it a stress response to the algae or an unrecognized contaminant?
* If the release is beneficial, is it sustained, or does the number of stem cells released decrease with subsequent servings? Is there any long term response that might justify ongoing consumption of the product?
* Do extracts from aphanizomenon flos-aquae carry the same risks of contamination as whole blue-green algae? This must be documented by independent laboratory analysis, and I have been unable to find any evidence that this is routinely performed on each lot of the product.

 

[vdt33]

Count me in for the stem cells group too. That sounds like the first treatment that could really work!

Thanks for all the information from everybody.

 

[hubcap_halo]

Hello Gracenote!

Happy to see you...I can't speak for anyone else, but I am documenting this for me...and the Clinics in both CR and Panama keep in contact regularly via email for the next 5 years plus. I had to sign off on that so I would think and (HOPE) they are compiling medical information. I don't think that would be available to us though. They can give more stats now maybe? I asked alot of questions and while keeping the privacy of patients they still allowed my curiousity to be satisfied. My Dr. from CR asked some great questions as soon as I got home, and has continued to follow up ALOT! (they are very caring and want you to get well). As for Cheney I think he would be the only one with hard facts in the US and the other Dr.... M0joey mentioned, GMA, GORDON MEDICAL ASSOCIATES. I too, was very interested in concrete information. Much of that was either validated through my research or through the success had from other patients in CR with CFS/ME and the long list of illness' they treat...at least enough for me to make a solid game plan.
Hope that helps....
Molly

Hi All,

Molly we are every day so grateful to you for sharing your experience with, and knowledge about, stem cells. You've started a little movement. Or maybe a big one.

STATS
I like Gracenote's compile stats idea (as best we can). To secure funds for treatment...numbers plus the kind of extensive research Molly did could be helpful for preparing a case and, I hate to say it, "selling" it to family, friends, rich aunts and uncles, mafia relatives, churches, synogogues, mosques, gambling addicts, pirates and god knows who. We could be determined to make this happen somehow.

CHENEY
Thanks Molly for mentioning Cheney as the man for numbers. Must be more than just his posted anecdotes, right? Maybe not. I called his office and was told "it's too soon to tell" and the total number of Cheney stem cell patients is "less than 20." Anyone on first name basis with Dr. Cheney? Still curious as to how each of those patients responded. Again--Molly this is why we are so grateful for YOU.

GROUPS AND....GRANTS?
The group rate is a fantastic idea. And I'm wondering how we could get this treatment to the most people--folks who are of limited means financially. And in my crazy thinking I still believe there must be some philanthropic group or individual who would love to see more research on what is the new frontier of CFS and autoimmune treatment. The Bill Gates Foundation, under "grant seekers," has a "negelected diseases" section. I doubt sending CFS patients to CR for stem cell treatment is what they have in mind, but it's a thought.

We need a famous, CFS-stem cell spokesperson which is what our culture loves.