Stem Cells

[Chris]

Stem-Kine schedules

Hi, Mr. Kite; good luck with the project of going south for the real thing! Might join you... But in the meantime, back to the best schedule for taking Stem-Kine. I looked again at the tables and figures in the piece, and it really does look as if stem cell percentages begin to drop at about day 7 or 8 of a 14 day intervention, in spite of continued supplementation. So maybe by then stores are getting depleted, and it would indeed be safer to quit and allow them to restore before resuming supplementation?

Anyway, I think I will use a 7 or maybe 8 day schedule, and since I take some pomegranate juice and oatmeal and mushroom extract already I think I will take two capsules in the morning before breakfast (this detail in response to one testimonial, which states "as advised"), and one booster capsule in the evening. So far I think I can already detect a small improvement in energy--I feel hopeful!
Best, Chris

 

[vdt33]

Sign me up for stem cells too.

vdt

 

[oerganix]

(removed at behest of a company)

Any idea what it costs?

 

[JanisB]

Another issue, for me at least pushing 60 (aagh!), are whether mitochondria in my own new stem cells are already damaged because they were made by damaged cells? Is the telomere length of the DNA in the new cells already shortened? I would prefer using my own cultured stem cells, were it not for these concerns.

The advantage of cord cells is that you have very young cells with maximal capacity to make energy. The disadvantage, as I understand it, is that you are getting someone else's DNA and I don't know what the body does with that!

 

[anncavan]

India clinic vs. Costa Rica/Panama clinics

I'm curious if anyone has compared the treatment plans of India vs. Costa Rica/Panama clinics. I've followed the Lyme patient blogs of Monica & Amy. If I read correctly Monica's first visit was ~4 months. Amy's was 8 weeks. The Costa Rica/Panama clinics seem to have you in and out in a week, 2 weeks max. Is this because it's catered for CFS, and not Lyme?

Anyone understand the differences in the clinic treatment approaches?

Thanks!

 

[Peggy]

I have not watched the 60 Minutes thing, but progressive neuromuscular diseases are NOT thought to respond well to stem cell treatment except in the early stages. Stem cells are not a cure-all, but they do seem to work really well on other conditions (i.e. heart failure). MS seems to be most treatable with stem cells in its early stages and after that, not so much.

 

[dhearns90]

Story on 60 Minutes tonight about people getting bilked out of their life savings from stem cell claims for ALS, MS, cancer, etc.

Just when it seems legit, stories like this come out giving major second thoughts. This charlatan guy, Stowe, however, sends them to Monterey, Mexico, not Central Am., and says it will cost a hundred grand. They inject the cells into the spinal cord and claim it cures ALS and other neuro disorders like MS.

An expert scientist who works with stem cells every day is now saying that umbilical stem cells (cord blood stem cells), which are blood forming cells, do NOT form into other tissue.

I missed the beginning, but the transcript will probably be online tomorrow.

http://www.cbsnews.com/stories/2010/04/16/60minutes/main6402854.shtml?tag=contentMain;contentBody

My parents just watched the story and are now 100% convinced that I am falling for a scam. It definitely makes you worry, but I still believe in this therapy.

The cellmedicine clinic does not promise a cure or improvement. It really doesn't seem like they are trying to "sell" their therapy the way that clown in the 60 Minutes segment was. It is only people who do not stand to profit that claim this therapy works (in its ability to help CFS anyway, not sure about other conditions).

I also have a hard time believing that Dr. Cheney would be fooled if the therapy had no merit. He has been treating CFS for decades and understands the disease about as well as anyone on the planet. If it is true that there is no benefit in treating CFS sufferers with stem cells, it would mean that Cheney is a fraud and that those who have given first hand accounts, like Molly, are either lying or delusional, and I just don't see that.

I understand the scientists' concerns about the lack of clinical trials but unfortunately, those are not coming any time soon. The segment also implies that no one has ever benefitted from stem cell treatments in foreign countries and this is simply not true.

 

[mojoey]

I heard from another Peterson patient today that he refers his patiets with serious interest in stem cells to one of his patients whom recovered enough to go skiing after getting stem cells in panama la Molly (without cheney). Prior to stem cells, she was a patient of Peterson's for 20 years, part of the incline village cohort with acute viral onset. She had an extremely elevated IL-8 and severely low VO2 max (<20 I believe). From what I gather, she never posts on the forums, so I just wanted to share her story briefly with you guys.

 

[anncavan]

Cheney patients - CFS only? or Lyme too?

Does anyone know... are some of Cheney's patients CFS + Lyme? Or are they CFS only?

Bummed I missed 60 minutes tonight. I'll keep an eye out for it to pop up online...

 

[oerganix]

It wasn't a very balanced story. "Gotcha" journalism was one comment. They did expose one fraudster operating in Monterrey, Mexico, but painted the whole stem cell situation with a very black brush and left out a lot of good information they should have included, to be fair and accurate. They said there is no FDA approved trial for ALS treatment by stem cells, for instance, but a commenter put up a link to a study that tells a different story. Basically, the US is 10 years behind the rest of the world because of the politics of the Bush era, so there is a lot of Wall Street pressure to denigrate other countries' advancements with scare stories like this one.

Re: Cheney's patients, as far as I know, his patients are only CFS, but maybe someone else knows more about that.

 

[mojoey]

Not sure if Cheney sees chronic lyme patients, but here is a post on his blog concerning lyme:

XMRV and other associated conditions including FM, MCS and Lyme
October 9th, 2009 in XMRV

As for overlap conditions in Dr. Mikovits’ cohort associated with CFS including FM and MCS and chronic Lyme and MS-like patients, I cannot speak to that. However, my clinic is filled with such overlap conditions. I suspect it will not matter very much. They are most likely infected with XMRV if they meet criteria for CFS with or without FM or MCS or chronic Lyme. Perhaps pure FM or pure MCS or pure Lyme will be different in degree of infection and maybe not. It will be very interesting to watch this data develop and expand to CFS-like conditions and the few pure FM and MCS cases that I have seen over the years. I have not really seen what I would call a pure Lyme case but many with CFS and a positive Igenex WB assay and antibiotic failure for chronic Lyme.

 

[mojoey]

Hi herbqueen,

I know of one patient of GMA that is planning on doing stem cells with (Name removed at request of the company)?, but that's it so far.

 

[Navid]

Stem cell research in Calif.

check this out: stem cell research California...how do we get them to start trialing stem cells on cfid's patients?

http://www.cirm.ca.gov/

 

[anncavan]

Stem Cell Town Halls in CA

check this out: stem cell research California...how do we get them to start trialing stem cells on cfid's patients?

http://www.cirm.ca.gov/

Thanks @lisag for providing this link. If you go further into the site: http://www.cirm.ca.gov/2010_Town_Hall_Forums they have a listing of Town Hall Forums. LA, San Diego & San Francisco. I've RSVP'd to the one in San Francisco for June 15th. If anyone else is planning on going, would love to meet in person!

 

[undercover707]

More information about stem cell treatments

I have been reading this thread for a while. Thank you so much for sharing this valuable info.

My doctor at Gordon Medical talked with me about stem cell treatment. He keeps in touch with Dr. Cheney and also with a doctor in a Clinic in Panama. My doctor is definetly excited about the treatment. He also stays up to date about the less expensive stem cell treatment (compared to the treatment in Panama) with (Name removed at request of the company. PM individuals for info)? At this point he is steering his interested CFS patients towards the treatment in Panama, because it includes umbilical cord blood stem cells which the doctors in Panama found especially helpful with CFS patients. He says it is also more tried and true, because Dr. Cheney has already sent people down there and is following up closely. My Practritioner at Gordon Medical referred me to Cheneys website and also to these addresses below for more information.
http://www.cellmedicine.com/locations.asp
http://www.panamamedicaltourism.com/the-stem-cell-institute-panama/
Please use the e-mail function in the “profile” section of this board, if you want to know more about the conversation that I had with my practitioner at Gordon Medical.

I am very glad that my Practitioner at Gordon Medical was the first one to tell me about stem cell treatment. I have been his patient since two years and think he is a very good and trustworthy practitioner. I am convinced that the this treatment is definetely no scam.

On the other hand I am not totally convinced to try the treatment right away, because I know very little about the long term effects. I would like to find out more about how safe this treatment is.
On my search I stumbled upon this info from a german stem cell clinic (xcell-center.com). They give some convincing facts, why there is little risk for tumor growth, although I can not judge how true the information is.
I also found this case report about tumor growth after stem cell treatment:
http://www.wired.com/wiredscience/2009/02/stemcelltumor/ My next step would be to get in touch with both the clinic in Panama (respectively costa rica) and Germany and ask them about their experience with stem cell treatment: How much patient follow-up data do they have (both how many patients have they followed up and also for how long ?)
Then I want to know more about the treatment procedure:

1. How many stem cells do they inject?
2. Where do they inject (intravenously or itrathecally)
3. What do they inject (umbilical cord stem cells, body fat stem cells, bone marrow stem cells)

Does anybody have other suggestions for questions to ask them?

From researching on xcell-center.com I found that they might be doing only one injection with 2 000 000 stem cells. The scource of the stem cells is usually the patients own bone marrow.

Wish you all the best,
David

 

[InvertedTree]

I'm also a patient at GMA and have been informed of the same thing. I too am researching Panama.

Other questions:

1. Risks with percentages
2. What type of patient does this work best on
3. How many injections
4. Average length of stay
5. How do bedbound/housebound people travel and do with this sort of travel

 

[Sushi]

I'm also a patient at GMA and have been informed of the same thing. I too am researching Panama.

Other questions:


2. What type of patient does this work best on
3. How many injections
4. Average length of stay
5. How do bedbound/housebound people travel and do with this sort of travel

I have some info on some of these questions as one of my best friends is a Cheney patient and has been to Panama for infusions several times.

She was in the category least likely to respond (according to Cheney and others)--very sick for decades, over 50, minimal response to other treatments. Cheney finds that patients under 40 (the younger the better) respond best, but, as far as my friend has told me, all patients have responded significantly both in self-reporting and in lab tests.

She has gone to Panama 3 times--each time with very significant improvement to her health. She was just about as sick as you can be and still be on this earth! She has had varying numbers of infusions, lengths of stay and protocols. On her most recent trip she had 4 infusions IV plus one into the spinal cord. The spinal infusion (about 15 minutes with a tiny needle) gave her really impressive cognitive improvements. Earlier infusions helped some with cognitive function but for her, more with physical stamina.

She also had the stem cells from her own fat (sorry, don't remember the terminology) infused. This was not so helpful and Cheney is no longer prescribing it.

For those who are more or less bedbound (as she was), Cheney seems to match up groups of patients to travel together and help each other. Also, in Pananam as opposed to the same clinic in Costa Rica (according to my friend) there are excellent support services provided including wheelchairs right from the airport to the clinic.

Her stays in Panama have averaged about a week to ten days. Also, the price is going down--it is about half what it was a year ago. Many of us are watching with interest!

Sushi

 

[mojoey]

I have a question for those GMA patients that are considering stem cells: did Dr. Gordon have you guys do cell signaling factors first?

 

[JanisB]

I followed some of the links about to stem cell studies and was bummed to learn that there are over 2500 clinical trials listed now and not a single one for ME-CFS. About 6 for MS, a few for Crohns, a couple Sjorgens, most of them on neoplasms of different kinds. I'm guessing this is because there is a lot of money for cancer research and a lot of money to be made if one can develop a patentable therapy. Gotta whine that CFS is ignored, as always. Even on the list of over conditions, for which there were several thousands, CFS was not listed. Bummer!

 

[JanisB]

stem cell talk inTexas
Randy Whites Restaurant in Frisco on May 7, at noon.
Dr. Joe (who has been treating people with their own stem cells treated to become pluripotent) and Susan Schmidt. If you live nearby, go and report to us all.

Here are the questions I asked them and hope to get answers to soon:
1. How can we be sure that traces of the chemical/virions used to make the stem cells pluripotent don’t remain in the cells and plasma injected into the body?

2. About how many cells are given in each injection/infusion?

3. Do adult stem cells have the full telomere length of any new cell, such as cord blood cells? And when they multiply to form new tissues, do these new cells have the full length as well?

4. Do the new cells have healthy mitochondria? if, in the case of us with ME-CFS, our mitochondria function is damaged, how can the body make healthy mitochondria for the new cells that will develop from the stem cells?

5. Is there a difference in the pluripotency of our hematopoetic cells made immature in the lab compared to cord blood cells? compared to mesenchymal stem cells?

6. From what I have read online on the ME-CFS forums, the people with ME-CFS who have gone to Costa Rica and Panama for stem cell treatments have received cord blood and have gotten mesenchymal stem cells derived from their own fat cells. The procedure is usually five - eight treatments in about a week. Reports are that those getting cord blood cells are getting better responses than those with mesenchymal (although some patients do both). What indicators do you have that hematopoetic stem cells made pluripotent would be more effective than mesenchymal cells derived from adipose tissue?

6. The cost of these treatments in Costa Rica is about $15,000, plus the one RT airfare and lodging and food for one week, which is relatively inexpensive. The cost of 5 treatments at your center is $12,000, but requires several trips to get 2-3 days between each injection to isolate and prepare the stem cells. If so, the price would be comparable. And in that case, what advantage would there be to treatment at your center v the centers outside of the US?

If you get some answers, let me know!! JanisB