dipic,
in 13 days!!!??? i'm so excited for you. and it makes me cry (softy that i am) that you and joey and others are going. i know you are going because you are desperate (as we all are!), so that sucks. but at least you keep trying. and this one (stem cells) really seems promising (as per joey's comment of cheney's 3 cures in 1 yr vs 1 cure in 20 yrs). thank you and all of the others who are going (and those who are finding ways of getting stem cells here in the US) for being our live experiment. i have done it myself many times (been a live experiment) and it is isolating and scary. but we are with you on this one! take us with you in spirit, and know that we all want the best for you. if you are going, it means you have struggled long and hard. so what more can i say except that you have this community of people going with you, in spirit.
sending cyber support yr way,
rrrr
in 13 days!!!??? i'm so excited for you. and it makes me cry (softy that i am) that you and joey and others are going. i know you are going because you are desperate (as we all are!), so that sucks. but at least you keep trying. and this one (stem cells) really seems promising (as per joey's comment of cheney's 3 cures in 1 yr vs 1 cure in 20 yrs). thank you and all of the others who are going (and those who are finding ways of getting stem cells here in the US) for being our live experiment. i have done it myself many times (been a live experiment) and it is isolating and scary. but we are with you on this one! take us with you in spirit, and know that we all want the best for you. if you are going, it means you have struggled long and hard. so what more can i say except that you have this community of people going with you, in spirit.
sending cyber support yr way,
rrrr
stem cell talk
my mom is going to this stem cell talk in San Francisco, CA, this week for me. (see info below)
this group is the group that said they took someone who was HIV+ and made him (him?) HIV- after a stem cell transplant (is that the right word?). i think the article was posted here on this thread? i asked my mom to call them and see if they'd like to experiment with me re: XMRV. she called and found out about this lecture this week. note: my mom is wonderful, but not so great at taking notes. we'll see.
my mom wrote:
Beginning to check out the stem cell info you sent.
The group is having a presentation in SF on Tuesday nite. I am going to go to it. I will try
to contact the doctor who did the work in the article. They did the stem cell work using cells from someone who was HIV immune. How do you get someone CFS "immune" if we don't have a test for it. Any thoughts? See the notice below from their website. -- Mom
http://www.cirm.ca.gov/files/Images/CIRM_SF_R3.jpg
Tuesday, June 15
YBCA Forum at the Yerba Buena Center for the Arts
701 Mission Street, San Francisco
6:00 – 7:30 PM
RSVP to:
Nini Gabra
ngabra@cirm.ca.gov
(415) 396-9255
my mom is going to this stem cell talk in San Francisco, CA, this week for me. (see info below)
this group is the group that said they took someone who was HIV+ and made him (him?) HIV- after a stem cell transplant (is that the right word?). i think the article was posted here on this thread? i asked my mom to call them and see if they'd like to experiment with me re: XMRV. she called and found out about this lecture this week. note: my mom is wonderful, but not so great at taking notes. we'll see.
my mom wrote:
Beginning to check out the stem cell info you sent.
The group is having a presentation in SF on Tuesday nite. I am going to go to it. I will try
to contact the doctor who did the work in the article. They did the stem cell work using cells from someone who was HIV immune. How do you get someone CFS "immune" if we don't have a test for it. Any thoughts? See the notice below from their website. -- Mom
http://www.cirm.ca.gov/files/Images/CIRM_SF_R3.jpg
Tuesday, June 15
YBCA Forum at the Yerba Buena Center for the Arts
701 Mission Street, San Francisco
6:00 – 7:30 PM
RSVP to:
Nini Gabra
ngabra@cirm.ca.gov
(415) 396-9255
jenbooks
Guest
- Messages
- 1,270
Re: HIV I think I explained this elsewhere at some point, but let me explain it again, because the HIV case is not at all like the Panama situation.
First, the guy had cancer, for which he required a bone marrow transplant (stem cells), which also requires chemo to wipe out the immune system first. That allows you to get rid of your aberrant cells, and have "space" to repopulate with the infusion of donor cells. Then you have to go on immunosuppressant drugs afterwards so you don't reject the donor stem cells.
Anyway, the guy also had HIV. So they chose a donor who was HIV immune. He was HIV immune because 1% of Caucasians lack the receptor the HIV virus first binds to when it first enters the body, to get into the cell. Without that "open door", it can't do much (barring mutation). Therefore that person is immune. That receptor happens to be redundant. Which means that other receptors can do its job anyway. So the donor is healthy, but simply lacks that receptor, and is incidentally therefore immune to HIV.
So they gave the HIV positive cancer patient a bone marrow transplant from such a donor, to see what would happen, and he seems cured.
In the case of ME/lyme/CFS etc. It is heterogenous. We have no idea yet how many will test XMRV positive. And even if it is a retrovirus, we don't really know how pathogenic it is, whether it needs helper viruses, etc etc. There is way too much evidence yet to be gathered--even if you test XMRV positive--before you can assume a direct casual relationship. That is my opinion of course. It is obviously not the opinion of folks who are taking HAART therapy already...
Then you'd have to luck out with XMRV binding to a receptor, initially, that is redundant--and that some people lack. That's pretty unlikely, imo, tho anything is possible.
Then to make it work as in the HIV patient you'd have to have chemo to wipe out your immune system, repopulate your body with donor stem cells, AND take immunosuppressant drugs in perpetuity.
Going to Panama is getting stem cells in order to repair a broken neuroendocrine immune system, to repair tissue damage collected over years. My hunch is even those who have recoveries will slowly relapse, especially if encountering a stressful event, trigger, toxin, virus, pathogen, whatever, unless they are on appropriate antiviral or antipathogen therapy (depending what their chronic pathogen IS. It surely isn't XMRV in all of us.)
So why do it, you may ask? Well, if you can trust the clinic and have extensively reviewed the procedures and asked a zillion questions and feel there is no foreseeable downside, no risk of adverse events that might further and permanently damage your health, etc, then perhaps you will improve or self-heal for now with stem cells, and need boosters every five-ten years, meanwhile, with your renewed strength be able to change your lifestyle to knowledgeably avoid as much stress as possible.
That's my view anyway.
First, the guy had cancer, for which he required a bone marrow transplant (stem cells), which also requires chemo to wipe out the immune system first. That allows you to get rid of your aberrant cells, and have "space" to repopulate with the infusion of donor cells. Then you have to go on immunosuppressant drugs afterwards so you don't reject the donor stem cells.
Anyway, the guy also had HIV. So they chose a donor who was HIV immune. He was HIV immune because 1% of Caucasians lack the receptor the HIV virus first binds to when it first enters the body, to get into the cell. Without that "open door", it can't do much (barring mutation). Therefore that person is immune. That receptor happens to be redundant. Which means that other receptors can do its job anyway. So the donor is healthy, but simply lacks that receptor, and is incidentally therefore immune to HIV.
So they gave the HIV positive cancer patient a bone marrow transplant from such a donor, to see what would happen, and he seems cured.
In the case of ME/lyme/CFS etc. It is heterogenous. We have no idea yet how many will test XMRV positive. And even if it is a retrovirus, we don't really know how pathogenic it is, whether it needs helper viruses, etc etc. There is way too much evidence yet to be gathered--even if you test XMRV positive--before you can assume a direct casual relationship. That is my opinion of course. It is obviously not the opinion of folks who are taking HAART therapy already...
Then you'd have to luck out with XMRV binding to a receptor, initially, that is redundant--and that some people lack. That's pretty unlikely, imo, tho anything is possible.
Then to make it work as in the HIV patient you'd have to have chemo to wipe out your immune system, repopulate your body with donor stem cells, AND take immunosuppressant drugs in perpetuity.
Going to Panama is getting stem cells in order to repair a broken neuroendocrine immune system, to repair tissue damage collected over years. My hunch is even those who have recoveries will slowly relapse, especially if encountering a stressful event, trigger, toxin, virus, pathogen, whatever, unless they are on appropriate antiviral or antipathogen therapy (depending what their chronic pathogen IS. It surely isn't XMRV in all of us.)
So why do it, you may ask? Well, if you can trust the clinic and have extensively reviewed the procedures and asked a zillion questions and feel there is no foreseeable downside, no risk of adverse events that might further and permanently damage your health, etc, then perhaps you will improve or self-heal for now with stem cells, and need boosters every five-ten years, meanwhile, with your renewed strength be able to change your lifestyle to knowledgeably avoid as much stress as possible.
That's my view anyway.
R**
Senior Member
- Messages
- 121
I havent read every post in the thread.. so not sure this was mentioned how how relevant it is to anyone.. listened to Christiane Northrup last night on PBS and she mentions that menstrual Blood contains stem cells. Google and found this:
http://www.prnewswire.com/news-rele...ood-may-benefit-stroke-patients-89903067.html
Stem Cells from Menstrual Blood May Benefit Stroke Patients
Study in STEM CELLS AND DEVELOPMENT Demonstrates Potential to Reverse Neural Trauma After Stroke
OLDSMAR, Fla., April 5 /PRNewswire-Firstcall/ ----Cryo-Cell International, Inc. today announced results of a study published this month in the cover article of Stem Cells and Development showing that stem cells found in menstrual blood may one day be a potential source for stem cell therapies in stroke and other central nervous system disorders. Menstrual stem cells, known as MenSCs, offer an easily accessible, non-controversial and renewable stem cell source with the potential to one day treat a host of diseases, such as stroke, osteoporosis, Alzheimer's and Parkinson's disease, according to a number of early studies. The study, entitled "Menstrual Blood Cells Display Stem Cell-Like Phenotypic Markers and Exert Neuroprotection Following Transplantation in Experimental Stroke," was conducted by researchers at Cryo-Cell International, the University of South Florida, Saneron-CCEL Therapeutics and the Medical College of Georgia.
Because the cell damage after an initial stroke episode occurs over an extended time, treatment strategies directed at quickly rescuing these nerve cells have the potential to slow the disease progression and possibly restore nerve function. In this study, researchers found that transplantation of MenSCs, either directly into the brain or peripherally, significantly reduced behavioral and histological abnormalities, suggesting that the MenSCs had a protective effect on brain cells, averting further apoptosis, or cell death, and potentially reversing the neural trauma experienced during a stoke.
"The data shows immediate behavioral recovery at an early period after transplantation although the exact mechanism underlying the neural benefits of MenSCs remains unknown," said lead researcher Cesar V. Borlongan Ph.D., Professor and Vice-Chair of Neurosurgery and Brain Repair at the University of South Florida Health. "We do know that several trophic factors have been identified post transplant that may potentially point to a secretion of therapeutic substances from MenSCs versus one of cell replacement. Equally important, is that there was no instance of complications or negative effects such as detectable tumor, ectopic formation or overt graft-versus-host in any of the transplanted animals."
During the study, the investigators analyzed shed menstrual blood and tissue to identify MenSCs. The samples were obtained using a menstrual cup and transferred to a laboratory for processing and cryopreservation. After inducing a simulated stroke (oxygen glucose deprivation, OGD) on adult rats, the researchers injected the rats with menstrual blood–derived stem cells and found that those who were exposed to MenSCs exhibited a significantly reduced death rate. Behavioral assessments of motor coordination and neurological function were performed on the rats 14 days after stroke-transplantation and indicated improvements in both motor and neurological abnormalities.
"Compared to other stem cell sources, such as bone marrow and umbilical cord blood, MenSCs are harvested from a readily available and renewable source of adult mesenchymal stem cells. These novel and highly prolific stem cells are easily obtained using non-invasive methodology and create the potential for matched cell transplantations in large scale clinical trials," said Julie Allickson, Ph.D., study investigator and Vice President, Laboratory Operations, Research and Development at Cryo-Cell International, Inc.
The benefits of stem cells derived from menstrual blood were first indicated in a study sponsored by Cryo-Cell that was published in Cell Transplantation in April 2008. That study demonstrated that MenSCs are stromal stem cells, meaning they have the capability to differentiate into important cells, such as such as bone, cartilage, fat, nerve and cardiogenic cells.
"Stroke is the third leading cause of death and disability in U.S. adults," said Mercedes A. Walton, Cryo-Cell's Chairman and CEO. "According to the American Heart Association, stroke will cost almost $68.9 billion in both direct and indirect healthcare costs in 2009. In view of these statistics, we are clearly encouraged by research study results that demonstrate significant promise for the development of regenerative medicine therapies to potentially treat and manage the debilitating conditions caused by stroke and possibly other neurological disorders."
The C'elle(SM) service is based on Cryo-Cell's expansive IP technology portfolio and was introduced in November, 2007 as the first and only service that empowers women to collect and cryopreserve menstrual flow containing undifferentiated adult stem cells for future utilization by the donor or possibly first-degree relatives in a manner similar to umbilical cord blood stem cells. Based on the continued success of MenSCs in the research setting, Cryo-Cell is actively expanding its portfolio of research collaborations with world renowned scientists committed to study this novel stem cell population for a broad range of regenerative therapeutic development.
About C'elle
The C'elle(SM) service was introduced in November 2007 as the first and only service that empowers women to collect and cryopreserve menstrual flow containing undifferentiated adult stem cells for future utilization by the donor or possibly their first-degree relatives in a manner similar to umbilical cord blood stem cells. For more information, visit http://www.Celle.com
http://www.prnewswire.com/news-rele...ood-may-benefit-stroke-patients-89903067.html
Stem Cells from Menstrual Blood May Benefit Stroke Patients
Study in STEM CELLS AND DEVELOPMENT Demonstrates Potential to Reverse Neural Trauma After Stroke
OLDSMAR, Fla., April 5 /PRNewswire-Firstcall/ ----Cryo-Cell International, Inc. today announced results of a study published this month in the cover article of Stem Cells and Development showing that stem cells found in menstrual blood may one day be a potential source for stem cell therapies in stroke and other central nervous system disorders. Menstrual stem cells, known as MenSCs, offer an easily accessible, non-controversial and renewable stem cell source with the potential to one day treat a host of diseases, such as stroke, osteoporosis, Alzheimer's and Parkinson's disease, according to a number of early studies. The study, entitled "Menstrual Blood Cells Display Stem Cell-Like Phenotypic Markers and Exert Neuroprotection Following Transplantation in Experimental Stroke," was conducted by researchers at Cryo-Cell International, the University of South Florida, Saneron-CCEL Therapeutics and the Medical College of Georgia.
Because the cell damage after an initial stroke episode occurs over an extended time, treatment strategies directed at quickly rescuing these nerve cells have the potential to slow the disease progression and possibly restore nerve function. In this study, researchers found that transplantation of MenSCs, either directly into the brain or peripherally, significantly reduced behavioral and histological abnormalities, suggesting that the MenSCs had a protective effect on brain cells, averting further apoptosis, or cell death, and potentially reversing the neural trauma experienced during a stoke.
"The data shows immediate behavioral recovery at an early period after transplantation although the exact mechanism underlying the neural benefits of MenSCs remains unknown," said lead researcher Cesar V. Borlongan Ph.D., Professor and Vice-Chair of Neurosurgery and Brain Repair at the University of South Florida Health. "We do know that several trophic factors have been identified post transplant that may potentially point to a secretion of therapeutic substances from MenSCs versus one of cell replacement. Equally important, is that there was no instance of complications or negative effects such as detectable tumor, ectopic formation or overt graft-versus-host in any of the transplanted animals."
During the study, the investigators analyzed shed menstrual blood and tissue to identify MenSCs. The samples were obtained using a menstrual cup and transferred to a laboratory for processing and cryopreservation. After inducing a simulated stroke (oxygen glucose deprivation, OGD) on adult rats, the researchers injected the rats with menstrual blood–derived stem cells and found that those who were exposed to MenSCs exhibited a significantly reduced death rate. Behavioral assessments of motor coordination and neurological function were performed on the rats 14 days after stroke-transplantation and indicated improvements in both motor and neurological abnormalities.
"Compared to other stem cell sources, such as bone marrow and umbilical cord blood, MenSCs are harvested from a readily available and renewable source of adult mesenchymal stem cells. These novel and highly prolific stem cells are easily obtained using non-invasive methodology and create the potential for matched cell transplantations in large scale clinical trials," said Julie Allickson, Ph.D., study investigator and Vice President, Laboratory Operations, Research and Development at Cryo-Cell International, Inc.
The benefits of stem cells derived from menstrual blood were first indicated in a study sponsored by Cryo-Cell that was published in Cell Transplantation in April 2008. That study demonstrated that MenSCs are stromal stem cells, meaning they have the capability to differentiate into important cells, such as such as bone, cartilage, fat, nerve and cardiogenic cells.
"Stroke is the third leading cause of death and disability in U.S. adults," said Mercedes A. Walton, Cryo-Cell's Chairman and CEO. "According to the American Heart Association, stroke will cost almost $68.9 billion in both direct and indirect healthcare costs in 2009. In view of these statistics, we are clearly encouraged by research study results that demonstrate significant promise for the development of regenerative medicine therapies to potentially treat and manage the debilitating conditions caused by stroke and possibly other neurological disorders."
The C'elle(SM) service is based on Cryo-Cell's expansive IP technology portfolio and was introduced in November, 2007 as the first and only service that empowers women to collect and cryopreserve menstrual flow containing undifferentiated adult stem cells for future utilization by the donor or possibly first-degree relatives in a manner similar to umbilical cord blood stem cells. Based on the continued success of MenSCs in the research setting, Cryo-Cell is actively expanding its portfolio of research collaborations with world renowned scientists committed to study this novel stem cell population for a broad range of regenerative therapeutic development.
About C'elle
The C'elle(SM) service was introduced in November 2007 as the first and only service that empowers women to collect and cryopreserve menstrual flow containing undifferentiated adult stem cells for future utilization by the donor or possibly their first-degree relatives in a manner similar to umbilical cord blood stem cells. For more information, visit http://www.Celle.com
jenbrooks, thanks for that info in yr last post.
re: the above last post: so with the menstrual stem cells, we'd not want to use our own, as that may be xmrv corrupted. but we could use a family member's menstrual stem cells, as a person on this forum told me privately, because they have a higher chance of being an HLA match. how do i find out if my sister is an HLA match? it is an easy Quest Lab test?
re: the above last post: so with the menstrual stem cells, we'd not want to use our own, as that may be xmrv corrupted. but we could use a family member's menstrual stem cells, as a person on this forum told me privately, because they have a higher chance of being an HLA match. how do i find out if my sister is an HLA match? it is an easy Quest Lab test?
mojoey
Senior Member
- Messages
- 1,213
More support for immunity-conferring stem cells:
http://www.ivanhoe.com/channels/p_channelstory.cfm?storyid=24418
http://www.ivanhoe.com/channels/p_channelstory.cfm?storyid=24418
joey, this article you posted says they added a gene. what gene, i wonder? is it a gene from another person?
here is a quote from the article:
Researchers at UCLA are the first in the world to use human blood stem cells to kill HIV. “The thought would be if you could replenish their immune systems with new functional T-cells, you might be able to combat the virus,” Dr. Zach explains. Scientists would take blood stem cells from the HIV patient -- add a new gene -- and put them back into the patient. A specialized organ in the immune system called the thymus turns them into T-cells, which naturally fight infection. There, they mature, target and destroy the infected HIV cells. In animals, the treatment hit the bulls-eye. “They were able to kill HIV target cells,” Dr. Zack said.
here is a quote from the article:
Researchers at UCLA are the first in the world to use human blood stem cells to kill HIV. “The thought would be if you could replenish their immune systems with new functional T-cells, you might be able to combat the virus,” Dr. Zach explains. Scientists would take blood stem cells from the HIV patient -- add a new gene -- and put them back into the patient. A specialized organ in the immune system called the thymus turns them into T-cells, which naturally fight infection. There, they mature, target and destroy the infected HIV cells. In animals, the treatment hit the bulls-eye. “They were able to kill HIV target cells,” Dr. Zack said.
mojoey
Senior Member
- Messages
- 1,213
I'm pretty sure it's this:
"Using a humanized mouse model, the researchers transplanted a small RNA molecule known as short hairpin RNA (shRNA), which induced RNA interference into human blood stem cells to inhibit the expression of CCR5 in human immune cells."
http://www.sciencedaily.com/releases/2010/02/100225164859.htm
I wonder how many years it'll take for this therapy to become commercially available (anywhere) and how many more decades we'll have to wait before researchers isolate and utilize the gene conferring XMRV immunity.
-j
"Using a humanized mouse model, the researchers transplanted a small RNA molecule known as short hairpin RNA (shRNA), which induced RNA interference into human blood stem cells to inhibit the expression of CCR5 in human immune cells."
http://www.sciencedaily.com/releases/2010/02/100225164859.htm
I wonder how many years it'll take for this therapy to become commercially available (anywhere) and how many more decades we'll have to wait before researchers isolate and utilize the gene conferring XMRV immunity.
-j
talked to Melissa, the nurse from http://www.celle.com (the menstrual blood stem cell place -- they have a patent on it).
she said they are only researching it now and it will be 10-15 yrs down the road before we can use menstrual blood in the US. so "banking" menstrual stem cells now still means a 10-15 yr wait.
to test for HLA: she said it is expensive. and it may or may not be covered by medicare or yr insurance. Need to ask.
she said they are only researching it now and it will be 10-15 yrs down the road before we can use menstrual blood in the US. so "banking" menstrual stem cells now still means a 10-15 yr wait.
to test for HLA: she said it is expensive. and it may or may not be covered by medicare or yr insurance. Need to ask.
jenbooks
Guest
- Messages
- 1,270
Your teeth have stem cells.
The other research is part of the whole field of gene and cell therapy.
There are centers already using this approach in clinical trials for cancer, and there are various interesting studies beginning in a variety of conditions, from heart conditions to neurological.
XMRV is so much in its infancy, Rrrr, I wouldn't pin your hopes on gene and cell therapy, or on approaching it the way that HIV patient was approached.
The other research is part of the whole field of gene and cell therapy.
There are centers already using this approach in clinical trials for cancer, and there are various interesting studies beginning in a variety of conditions, from heart conditions to neurological.
XMRV is so much in its infancy, Rrrr, I wouldn't pin your hopes on gene and cell therapy, or on approaching it the way that HIV patient was approached.
Chris
Senior Member
- Messages
- 845
- Location
- Victoria, BC
Update on Stem-Kine
Hi, I promised to update on my continued use of Stem-Kine, and so here goes. I have been taking it with deliberate irregularity--some days 1, some days 2, some periods of several days with none; Mr. Kite and I posted some thoughts much earlier in this thread that suggested (from different perspectives, but I think our conclusions were basically the same) continued use might deplete too much, and cause anemia and other bad things--which Mr. Kite had previously experienced from the use of much more powerful stem cell mobilizers.
I continue to do well, no quick resolution, but the moving average is still slowly up, and most days I feel reasonably good. Energy level is generally a bit up, and continuing. Still down days, but no serious crashes. Blood pressure still steadying and moving towards where I would like it, and heart rate still nicely low most of the time. Am now only taking a very small dose of BP med, and tapering off that.
Interestingly, an observant friend just confirmed what I had already thought--my hair is growing thicker and covering my head better. When it begins to turn brown again you can expect more jubilant news! But not yet... Sleep too is slowly improving, and I have now cut out the small dose of Zopiclone I had been taking; still taking a herbal mix and a tiny bit of Melatonin (.2 mg).
Mr. Kite is going on to the real thing--I wish you and the others success! But for the time being, I am going to continue Stem-Kine; it seems safe taken as I am taking it, and not too expensive--and it really seems to be helping. I can be patient as long as I am improving.
Best wishes to all, Chris
Hi, I promised to update on my continued use of Stem-Kine, and so here goes. I have been taking it with deliberate irregularity--some days 1, some days 2, some periods of several days with none; Mr. Kite and I posted some thoughts much earlier in this thread that suggested (from different perspectives, but I think our conclusions were basically the same) continued use might deplete too much, and cause anemia and other bad things--which Mr. Kite had previously experienced from the use of much more powerful stem cell mobilizers.
I continue to do well, no quick resolution, but the moving average is still slowly up, and most days I feel reasonably good. Energy level is generally a bit up, and continuing. Still down days, but no serious crashes. Blood pressure still steadying and moving towards where I would like it, and heart rate still nicely low most of the time. Am now only taking a very small dose of BP med, and tapering off that.
Interestingly, an observant friend just confirmed what I had already thought--my hair is growing thicker and covering my head better. When it begins to turn brown again you can expect more jubilant news! But not yet... Sleep too is slowly improving, and I have now cut out the small dose of Zopiclone I had been taking; still taking a herbal mix and a tiny bit of Melatonin (.2 mg).
Mr. Kite is going on to the real thing--I wish you and the others success! But for the time being, I am going to continue Stem-Kine; it seems safe taken as I am taking it, and not too expensive--and it really seems to be helping. I can be patient as long as I am improving.
Best wishes to all, Chris
I am a little dense (even pre ME on matters of science) and this thread is awfully long so could someone just clarify for me. Is stem Kine used by cheneys patients? i am just a little confused as I thought I read here it was mostly Vit D (could be very wrong) and I thought Cheney was one of the few Drs who didn't advocate D and who was in fact opposed to its use. i apologize if I have got many wires crossed here 
Chris
Senior Member
- Messages
- 845
- Location
- Victoria, BC
Stem-Kine
Hi, Hellsbells; I know this thread is long, but if you are seriously contemplating taking some potentially quite powerful stuff, I think you owe it to yourself to investigate as thoroughly as you can. However, here are some notes.
I am not a Cheney patient, though I was for a while a paid subscriber to his website (no longer). I am not aware that he has ever referred to Stem-Kine, but Molly told us that the clinics he used (which are partly run by the same researcher who runs Aidan, the company making S-K) recommended use of S-K before and after stem cell therapy, so it is likely that Cheney's patients did use or are using the stuff; but I don't know that for fact.
There are available two small scale studies--there are refs in this thread, and you can find them on the www.stem-kine.com website (or just search PubMed under "Stem-Kine"), showing the rise in circulating stem cells of several kinds triggered by taking 2 x 2 Stem-Kine capsules per day. As both Mr. Kite and I noted, one of these begins to decline before the 14 days of the study, suggesting a danger in taking that amount steadily--Mr. Kite has had experience of the serious effects that can occur if the bone marrow delivery system of stem cells is over-driven. You should note that the company recommends just 2 per day, not the four of the short term study.
As I noted in my last post, I am currently taking a fluctuating dose, 1 some days, 2 other days, then periods of several days--to be increased to a week--of none at all, just to try to avoid over-driving the system.
The ingredients listed on the website are largely Vit D (1,000 per capsule), beta glucans (also found in oats and mushrooms), ellagic acid (also found in pomegranate and raspberries), and astragalus. These extracts are then fermented by some bugs, Lactobacillus varieties I think; I simply do not know just what effect this has. But if you are already taking a significant amount of any foods or supplements that contain these substances, you might want to take that into account in regulating your dose of S-K. Better to err on the side of caution than overdrive the system.
Mr. Kite quit after a few weeks, noting no change; I can understand his concern, having gone through what he has. I am continuing, have now been taking the stuff on and off for about two months, because I am noting some good effects.
I should also say, however, that I have in this period also introduced filtered alkaline water to my diet (again following Cheney), and in the last week have installed Stetzer filters to clean up the electricity running in my apt. Both of these seem also to have positive effects, though I think it is the S-K that is most responsible for the changes in my blood pressure and heart rate. However, as I keep reminding myself and others, this is not a placebo controlled, double-blinded experiment--it is my life.
To sum up: I think the stuff is useful, if used carefully--it might be wise to get red blood cell counts from time to time to warn if there is any depletion of bone marrow activity. Don't expect immediate and dramatic results. And I think it would be wise to use some of your energy to go through this thread, however long it takes, to gather what info you can; I think you owe it to yourself.
Cheney is not responsible for my use of S-K, nor is Molly, though I have taken information from both; and I don't want to be held responsible for your use, or non-use, of this stuff either. You have to understand that you are finally responsible for any decisions you take about your own health. Sorry if this sounds a bit stern, but that is how it is, and we all have to understand that in using information from this forum.
Best wishes, and good luck if you decide to give it a try--and keep us posted on the results! Chris
Hi, Hellsbells; I know this thread is long, but if you are seriously contemplating taking some potentially quite powerful stuff, I think you owe it to yourself to investigate as thoroughly as you can. However, here are some notes.
I am not a Cheney patient, though I was for a while a paid subscriber to his website (no longer). I am not aware that he has ever referred to Stem-Kine, but Molly told us that the clinics he used (which are partly run by the same researcher who runs Aidan, the company making S-K) recommended use of S-K before and after stem cell therapy, so it is likely that Cheney's patients did use or are using the stuff; but I don't know that for fact.
There are available two small scale studies--there are refs in this thread, and you can find them on the www.stem-kine.com website (or just search PubMed under "Stem-Kine"), showing the rise in circulating stem cells of several kinds triggered by taking 2 x 2 Stem-Kine capsules per day. As both Mr. Kite and I noted, one of these begins to decline before the 14 days of the study, suggesting a danger in taking that amount steadily--Mr. Kite has had experience of the serious effects that can occur if the bone marrow delivery system of stem cells is over-driven. You should note that the company recommends just 2 per day, not the four of the short term study.
As I noted in my last post, I am currently taking a fluctuating dose, 1 some days, 2 other days, then periods of several days--to be increased to a week--of none at all, just to try to avoid over-driving the system.
The ingredients listed on the website are largely Vit D (1,000 per capsule), beta glucans (also found in oats and mushrooms), ellagic acid (also found in pomegranate and raspberries), and astragalus. These extracts are then fermented by some bugs, Lactobacillus varieties I think; I simply do not know just what effect this has. But if you are already taking a significant amount of any foods or supplements that contain these substances, you might want to take that into account in regulating your dose of S-K. Better to err on the side of caution than overdrive the system.
Mr. Kite quit after a few weeks, noting no change; I can understand his concern, having gone through what he has. I am continuing, have now been taking the stuff on and off for about two months, because I am noting some good effects.
I should also say, however, that I have in this period also introduced filtered alkaline water to my diet (again following Cheney), and in the last week have installed Stetzer filters to clean up the electricity running in my apt. Both of these seem also to have positive effects, though I think it is the S-K that is most responsible for the changes in my blood pressure and heart rate. However, as I keep reminding myself and others, this is not a placebo controlled, double-blinded experiment--it is my life.
To sum up: I think the stuff is useful, if used carefully--it might be wise to get red blood cell counts from time to time to warn if there is any depletion of bone marrow activity. Don't expect immediate and dramatic results. And I think it would be wise to use some of your energy to go through this thread, however long it takes, to gather what info you can; I think you owe it to yourself.
Cheney is not responsible for my use of S-K, nor is Molly, though I have taken information from both; and I don't want to be held responsible for your use, or non-use, of this stuff either. You have to understand that you are finally responsible for any decisions you take about your own health. Sorry if this sounds a bit stern, but that is how it is, and we all have to understand that in using information from this forum.
Best wishes, and good luck if you decide to give it a try--and keep us posted on the results! Chris
Thank-you very much for your prompt and detailed post in reply Chris it is very much appreciated. Don't worry I don't hold any one responsible for my health, even the actual paid Drs who made me worse I have read it carefully, Im very interested in doing actual stem cells as my MCS seems to prevent most sups and I can see an ingredient or two in the SK which I am pretty sure I would struggle with. Actually in all honesty I have read the entire thread but do not retain information at all well , although that cog impairment is pretty standard for some weird reason I find it less embarrassing being thought of as a little dense - it is my standard response to well people so i think I trot it out here sometimes. thank you so much again and I wish you the very best of luck with SK,
Helsbells
I have read it carefully, Im very interested in doing actual stem cells as my MCS seems to prevent most sups and I can see an ingredient or two in the SK which I am pretty sure I would struggle with. Actually in all honesty I have read the entire thread but do not retain information at all well , although that cog impairment is pretty standard for some weird reason I find it less embarrassing being thought of as a little dense - it is my standard response to well people so i think I trot it out here sometimes. thank you so much again and I wish you the very best of luck with SK,Helsbells
Chris
Senior Member
- Messages
- 845
- Location
- Victoria, BC
Hi, Helsbells--sorry if I sounded a bit stern--I sometimes get a bit nervous posting stuff which I don't fully understand myself, and posting results when I am not sure if they are quite real, and am not quite sure what really lies behind them! And of course it is possible to post an improvement and crash the next day--you know how it goes with this damned thing we all face. I too am tempted to go to one of the stem cell clinics, but am having what I interpret as a good enough response to S-K to see how far I can get this way--and it is a hell of a lot cheaper! Best of luch whatever road you take, Chris
I don't think you did just caring and absolutely I understand your position - fluctuations and ramifications
If only those in power felt such a sense of responsibilty we would all be a lot further along the road, i think people are actually brave sharing and reporting back from the front line.Good luck back at you
my mom went to that stem cell talk in san francisco last night (the one i mentioned earlier). she said there were 2 other folks from phoenix rising at the talk, too. and maybe they took better notes than my mom...
my mom had a lot of notes from this talk but in her usual style, they might be mixed up -- or not. here were some key things she heard from the panelists:
- the panelists were really worried that folks are running abroad to get stem cell treatments that are not really stem cells. they said to get a sample of the stem cells from wherever you are going to get the stem cell treatment, and then this USA organization (International Society for Stem Cell Research) will analyze the stem cells for free and tell you if they really are stem cells. CAN SOMEONE DO THIS FOR PANAMA???
- my mom asked the panelists a question about having CFS and going to panama for stem cells, and their answer was this: for the any cfs folks going over to panama, try to get any scientist or doctor or team of doctors to give each participant a questionnaire before and after the treatment to track any changes. this will help us (and the International Society for Stem Cell Research) use the info that we get from these experimental trips. (you need a legit doctor or scientist to do this before/after questionnaire if you want the scientific community to respect your before/after results.)
- animal studies do not necessarily transfer (i.e. replicate) to humans.
- you can't control the migration of what you inject into the body, and so if you want it to go to X site in yr body, instead it could go to Y site.
- you could be injecting cancerous material into you with the stem cells. there is that risk.
rrrr
my mom had a lot of notes from this talk but in her usual style, they might be mixed up -- or not. here were some key things she heard from the panelists:
- the panelists were really worried that folks are running abroad to get stem cell treatments that are not really stem cells. they said to get a sample of the stem cells from wherever you are going to get the stem cell treatment, and then this USA organization (International Society for Stem Cell Research) will analyze the stem cells for free and tell you if they really are stem cells. CAN SOMEONE DO THIS FOR PANAMA???
- my mom asked the panelists a question about having CFS and going to panama for stem cells, and their answer was this: for the any cfs folks going over to panama, try to get any scientist or doctor or team of doctors to give each participant a questionnaire before and after the treatment to track any changes. this will help us (and the International Society for Stem Cell Research) use the info that we get from these experimental trips. (you need a legit doctor or scientist to do this before/after questionnaire if you want the scientific community to respect your before/after results.)
- animal studies do not necessarily transfer (i.e. replicate) to humans.
- you can't control the migration of what you inject into the body, and so if you want it to go to X site in yr body, instead it could go to Y site.
- you could be injecting cancerous material into you with the stem cells. there is that risk.
rrrr
dipic
Senior Member
- Messages
- 215
Thanks for the report Rrrr. Hope you don't mind if I pick it apart a bit.
Do I know without a shadow of a doubt that the clinic in Panama is 100% legit? No. But I think it's pretty reasonable at this point to deduce they likely are, and certainly rule out that they aren't just injecting patients with saline or something.
Incidentally, we (my pops and I) called the clinic yesterday and asked (among other things) if they tested to see how many adult stem cells are in the body before treatment. They said no but that if we wanted, they could order in a test for us and do that. (Then, obviously, you could do it again sometime after the infusions to see if the increase.) No hesitation when saying they would do this, and I think that's pretty telling.
(Btw, the tests I found to do this can be ordered here but note that they are expensive: http://www.stemcellcount.com/order-stemcell-test-now)
Hm, without much context, I don't really know what this means. Are they going by the logic that "they (these potential scammers) could be injecting you with anything"? But it seems not because they mention "cancerous materials" in particular. Do you know what they meant exactly by this, by any chance?
Anyway, thanks again for the report, Rrrr.
(btw, just 10 more days before I leave. excited and scared... bit more of the latter to be truthful. :worried: really wish I knew how to rest! :Retro mad
Ben
Well, Cheney did check the clinics out personally before sending patients any patients there so... depending on how much you can trust Cheney. There have also been benefits reported from a variety of different sources so they have to be injecting them with something good.
Do I know without a shadow of a doubt that the clinic in Panama is 100% legit? No. But I think it's pretty reasonable at this point to deduce they likely are, and certainly rule out that they aren't just injecting patients with saline or something.Incidentally, we (my pops and I) called the clinic yesterday and asked (among other things) if they tested to see how many adult stem cells are in the body before treatment. They said no but that if we wanted, they could order in a test for us and do that. (Then, obviously, you could do it again sometime after the infusions to see if the increase.) No hesitation when saying they would do this, and I think that's pretty telling.
(Btw, the tests I found to do this can be ordered here but note that they are expensive: http://www.stemcellcount.com/order-stemcell-test-now)
Well, that's what Cheney is doing with his patients, right? Supposedly? One would hope? Who knows with him; ( I hate to criticize him so much but I just feel Cheney and his much of his work are... enigmatic... some might say controversial? =/ I know I'm not the only one who feels this way.)
For the most part, with the particular type of stem cells that we're talking about here and techniques used to deploy them, that is true. However, I do wonder about the intrathecal injections in this case. Injecting the cells into the spine... I mean, I don't know how much "leakage" there would be to other parts of the body but you would think that this technique would, at least in theory, allow cells to attach parts of the CNS easier than a regular IV infusion through the arm(?). I guess?
Hm, without much context, I don't really know what this means.
Are they going by the logic that "they (these potential scammers) could be injecting you with anything"? But it seems not because they mention "cancerous materials" in particular. Do you know what they meant exactly by this, by any chance?Anyway, thanks again for the report, Rrrr.
(btw, just 10 more days before I leave. excited and scared... bit more of the latter to be truthful. :worried: really wish I knew how to rest! :Retro mad
Ben
hi ben,
happy to have you pick apart my report (i.e. my mom's notes). do keep in mind that my mom is great, but often gets things a bit "off" when she repeats what she has heard.
yes, i agree: cheney will have checked out the clinic before sending his people. and he does do a before/after assessment. but it would be great if the 3 groups going over without cheney could also do a before/after assessment under the supervision of a doctor. i wonder if we have any doctors who might be interested in this. or researchers? maybe Rich Van K? a good friend of people with CFS and an excellent cfs researcher. or maybe cheney himself, tho he is not supervising he trips? this is something to ask molly her opinion on, i would think. i have private messaged her (last wk) and not heard back. i know she is taking a break now...
re: cancerous material. my mom may have heard that wrong, but i think she was saying that stem cells from another person could have cancerous material in them, just like they could have a virus or something. she also said something about stem cells making already present cancerous material in the body grow faster. but she may have gotten that wrong too.
hopefully the other two phoenix rising members will be reporting soon on what they heard from this talk.
warmly,
rrrr
happy to have you pick apart my report (i.e. my mom's notes). do keep in mind that my mom is great, but often gets things a bit "off" when she repeats what she has heard.
yes, i agree: cheney will have checked out the clinic before sending his people. and he does do a before/after assessment. but it would be great if the 3 groups going over without cheney could also do a before/after assessment under the supervision of a doctor. i wonder if we have any doctors who might be interested in this. or researchers? maybe Rich Van K? a good friend of people with CFS and an excellent cfs researcher. or maybe cheney himself, tho he is not supervising he trips? this is something to ask molly her opinion on, i would think. i have private messaged her (last wk) and not heard back. i know she is taking a break now...
re: cancerous material. my mom may have heard that wrong, but i think she was saying that stem cells from another person could have cancerous material in them, just like they could have a virus or something. she also said something about stem cells making already present cancerous material in the body grow faster. but she may have gotten that wrong too.
hopefully the other two phoenix rising members will be reporting soon on what they heard from this talk.
warmly,
rrrr