Stem Cells

[hubcap_halo]

"Maggie in this thread is the first-hand report with the best claims that I have read, but (no offense), part of me wonders if this is even a real person, or perhaps someone just shilling for the doctors offering this therapy. Again, no offense, and nothing personal intended at all. The report sounds very realistic and seems to come from someone who genuinely has experienced CFS, so on the surface it sounds very convincing to me. But this is a lot of money, so the skeptic or cynic can't help but wonder about the source of these largely undocumented/unverified claims." --Mr. Kite

Mr. Kite and all,

I respect your skepticism.

And I can confirm that Molly (the "Maggie" you mention) is a real person just as her improvement from stem cell treatment is real. She's no "shill" for any clinic. She's generously spent time and energy posting, answering questions, and guiding people the to research she tackled before deciding to go. Her motives are altruistic. People who are getting better often drop off the boards to get back to their lives. She simply wants to see others have the opportunity to get better...and to make the decision based on their own research.

I too believe stem cells are currently our best hope. (And from sources I trust I also believe that addressing methylation block has helped many improve and am grateful to Rich V for his work.)

Unfortunately hard numbers aren't readily available regarding CFS and stem cells. I called Dr. Cheney's office asking for some, and was told "it's too early to tell." I asked how many patients Dr. Cheney had accompanied for stem cell treatments and was told "Under 20." Lower number than I'd expected.

If there are indeed CFS 100 patients that have received SC treatment it would be wonderful to know how they are doing. I know the Costa Rica and Panama clinics closely followup with all patients. But understandably at this early stage they aren't posting "in progress" data either. Other than contact each person, I don't have any other bright ideas. Please post if you do.

 

[oerganix]

http://monicasindiaadventure.blogspot.com/

This link was posted on another thread here, on lyme etc., so I thought it would be of interest in this thread.

It's a blog by a 15 yr old girl, paralyzed by Lyme apparantly, who has been to India twice for embryonic stem cell treatment. She is walking again and has just had another treatment, in hopes of regaining feeling.

 

[alice1]

Molly is the real deal and I can't thank her enough for the time,concern and information she has given.
Hope the days bring more than you expect miss m.

 

[mojoey]

Regarding Monica, I met her in person in Germany at the clinic where I was getting photon therapy. At the time she she was still in a wheelchair, unable to walk at all. I remember her being geeked about feeling pain again after the photon therapy (she'd lost just about all feeling), but unfortunately the tx didn't help her mobility at all.

 

[Molly29]

Yup....I AM REAL!!!

"And I can confirm that Molly (the "Maggie" you mention) is a real person just as her improvement from stem cell treatment is real. She's no "shill" for any clinic. She's generously spent time and energy posting, answering questions, and guiding people the to research she tackled before deciding to go. Her motives are altruistic. People who are getting better often drop off the boards to get back to their lives. She simply wants to see others have the opportunity to get better...and to make the decision based on their own research. "

"hh"....Appreciate your phone call re: this post. I am REALLY REAL right?...and I am having great improvements and will post an update shortly...but you already know the GOOD STUFF!
I just had to get on and post...I truly encourage anyone to post questions and ask away just as I did on my path to my journey with stem cells.
Thank you my friend....
Molly

 

[Molly29]

Thank you Al....

Molly is the real deal and I can't thank her enough for the time,concern and information she has given.
Hope the days bring more than you expect miss m.

Al,
Awwww what can I say but thank you to you too...you are beautiful inside and out.
We will talk soon...
Right!
M

 

[oerganix]

Again, we know that is real and not a phony story made up by people pushing stem cells because... ? It's very easy to make a web page. Maybe it's because in my former life I was a writer, so it's not hard for me to imagine creating a story like that, complete with photos, in about 10 minutes. But that's the kind of thing I'm talking about. We don't really know if it's genuine. I've seen worse scams than that, and we know there are doctors in Mexico and elsewhere cashing in on unsuspecting folks by injecting saline and calling it "stem cells." After years of rip-off CFS "treatments," it's hard not to be skeptical of *everything.*

Skepticism is good and I absolutely agree it's hard not to be wary of everything, with our histories. But without being able to actually have a face to face with the above persons, I had to rely on my intuition. It's just a hunch, I could be deceived, but I have the feeling these people are for real. So, I shared it with the list, thinking it would be of interest. I'm not trying to prove anything with it.

I think the clinics in Costa Rica and Panama would be better for several reasons, not the least of which, the type of stem cells they use and the fact that those countries are closer, and Dr Cheney has checked them out.

This is still an 'experimental' treatment and skepticism is absolutely appropriate, but sooner or later we have to go with what feels right to each of us.

 

[leaves]

I dont know a lot about stem cells, but I wanted to share the following info with you:
I tested xmrv+. When I discussed stem cells with Dr Klimas she said that this is very risky and that I should not do that BECAUSE of my xmrv infection. I think because the immune system shuts down and then it takes over? no idea.

 

[oerganix]

I dont know a lot about stem cells, but I wanted to share the following info with you:
I tested xmrv+. When I discussed stem cells with Dr Klimas she said that this is very risky and that I should not do that BECAUSE of my xmrv infection. I think because the immune system shuts down and then it takes over? no idea.

At one point the procedure required chemically shutting down the immune system so the body wouldn't reject the stem cells (taken from outside the patient's body) prior to them being able to do their "job". But the procedures being done, at least in the clinics in Central America for Cheney's patients, do not involve shutting down the immune system with drugs. They use the patients own stem cells. So, it might be interesting to ask Dr Klimas if she was referring to the former type of procedure.

Of course, it's early days for this treatment, so we don't know whether an XMRV infection could re-activate and overrun the 'new' immune system, or whether the new and improved immune system would be able to resist any and all viral attacks, or even if XMRV does what we think it might. So, yeah, it's 'risky' for a couple of reasons.

Another reason I am grateful to those who can and who choose to take the risk for science and for all of us.

 

[hubcap_halo]

Another reason I am grateful to those who can and who choose to take the risk for science and for all of us.

Like Molly.
-----------

Protective of friends' privacy and don't speak for them, but now a little more about her.

I arrived here late and thought Molly must be spent-tired after posting excellent reports on her treatment and generously answering every posted question. I PM'd her never expecting a reply.

Since then, she's given me given me so much--time, kindness, new hope, new knowledge, and, best, a wonderful new friendship. A pleasure and inspiration to see her grow stronger week by week and get back to--holy sh*t--living life.

She couldn't be a shill for anyone or anything, giving hope, pocketing cash most people don't have and then watch them stay sick. Never. (Ok we've established this but I want it hammered home. And don't feel bad, skeptics. If there are stem cell clinics scamming people may they be exposed...then leveled.

Molly's showed us--me at least---that stem cells don't necessarily mean an expensive chaperone, 50k? 100k? basically a snowball's chance in hell for most. Grateful that Dr. Cheney drew attention to clinics in Panama and Costa Rica. Very grateful for Molly's courage to do this on her own and then show us it's more feasible than we might have imagined.

I don't know exactly how many phone calls and emails Molly fields a day from PWC's asking for support and guidance, but it's a lot. She is one of those rare birds using her growing health and energy to give back, to try to pull as many of us up with her as possible.

Thank you Molly.

(PS Thank you Wrsther for telling me about this thread, and so much more)

 

[Chris]

Hi, all; my Stem-Kine has arrived safely; it says to take two a day--does anyone have any idea whether it is better to divide the doses, or to take both together? The stuff is expensive enought that I want to maximize the possible benefits. Best, Chris

 

[bluebonnet]

...the procedures being done, at least in the clinics in Central America for Cheney's patients, do not involve shutting down the immune system with drugs. They use the patients own stem cells.

Slight correction: Cheney's patients do not use their own stem cells. They are given placenta and cord blood stem cells from newborn babies.

 

[Chris]

Stem-Kine stuff

Hi, Stem-Kine users; I have started taking the stuff, and besides the new website (www.stem-kine.com ) there are now two published papers available–you can either just type in “stem-kine” on PubMed and go to the full texts which are freely available, or try the URLs: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2804590/?tool=pubmed and http:/www.translational-medicine.com/content/8/1/34 . From reading these I gather that the dose used in the small studies was 2 x 2 capsules per day, rather than the 1 x 2 suggested on the bottles. The studies also suggest that a maximum circulation of stem cells factors is achieved after 2 and 7 days, with other information showing that continuous stimulation of stem-cell formation by more potent means can lead to trouble.

This suggests that a more efficient use of the capsules might be a schedule more like 2 x2 on alternate weeks, or some more complex system than that. I phoned the company, and was told that investigations of that kind would get underway, but since the research had not been done they were not prepared at this point to suggest alternative schedules, though they agreed that my suggested dosing might work. So that is I think what I shall use, unless some user has better information. Good luck to us all, Chris.
PS just heard from the company --if you stick to the suggested 2 capsules per day, take both together in the morning.

 

[oerganix]

Slight correction: Cheney's patients do not use their own stem cells. They are given placenta and cord blood stem cells from newborn babies.

Ah yes. Thanks for pointing that out. According to Molly's posts, some people get their own, but Cheney's patients do not, and apparently CFS patients follow the Cheney lead.

Bluebonnet, if you can say, are you associated in any way with Cheney? You seem very knowledgeable about him. Or are you just paying better attention than I have been?

MOLLY, question for you: What were your gut issues before? I ask because I don't seem to have the gut issues many with ME/CFIDS have. So, I would think I wouldn't need to address gut issues. What I really need help with is overall energy/stamina and PEM. I'm doing low dose naltrexone and having some good results.

Someone else asked about allergies/asthma and MCS. I think I remember that you said allergies and asthma were improved, but maybe I'm remember something from some other source.

When that group research effort comes along, I'm in. Likewise, the group rate.

 

[oerganix]

I found an interesting article on "menstrual stem cells". Seems women can have it cryopreserved for use by family members, or themselves, and it's similar to cord blood stem cells. Hmmmmm.....sure would be nice to have a use for that stuff. And they have affiliates in Nicaragua as well as 20 other countries around the world.

http://www.marketwatch.com/story/cr...-2010-results-2010-04-13?reflink=MW_news_stmp

 

[dhearns90]

Thanks Molly, for the detailed answers to my questions.

For those of you that are interested, Mutaflor is now available in the US.

 

[Chris]

Stem-Kine schedules

Mr. Kine, I put forward the alternating week schedule just as a first shot at maximising the "bang for the buck" response, but your suggestion of 2 weeks on and 2 off probably makes just as good sense. I was basing my hesitation about long term continued use on the comments about GM-CSF mobilizers --causing possible adverse events such as thrombosis and the later comment (p.7) that "the levels of mobilization associated with Stem-Kine administration are closer to conditions that can be maintained over long term use, which is not possible with currently available mobilizers...maintaining such extreme levels of mobilization over a long term increases the risk of extramedullary hematoppiesis, bone marrow depletion, and thrombosis..." So it looks as if one has to exercise some care in long term use. Since the recommendation on the capsules says take 2 per day, not the 4 used in the study, I thought maybe caution would be advisable.

The other reason for suggesting a 7 day schedule as maybe efficient was the comment that "we observed maximal increases (almost doubling) of CD34+KDR+ cells in PBMC occurring at day 7 of supplementation, whereas peak CFU-E activity occurred at day 2." So it seemed to me that maybe day 7 would be a good time at which to stop, or maybe taper off, and let inertia as it were slowly lower thd increase. But these are just guesses, and I have to make it clear that I really don't know what these initials mean--I am just looking at what appear to be the dynamics of the process.

I can think of more elaborate schedules, that might stretch the supply a bit further--for instance, 2 the first day, then 2 x 2 for 5 days, and back down to 2 for the seventh day--which would save 4 capsules on the week, using 24 rather than 28. Reading the papers, it just seems that going up to 2 x 2 per day does really help, balance that with the possible long term dangers, and with the cost of the stuff-.. I think the dosing is really up for testing and experience and affordability. There is no real suggestion in the papers that continued use at 2x2 might be a danger, but I am going to err on the side of caution, I think.

Hope more people join in with suggestions! Best wishes, Chris

 

[hubcap_halo]

When that group research effort comes along, I'm in. Likewise, the group rate.

Count me in for the group rate as well. Can we get a head count started to pass on to Molly?
If you're shy, you can just PM her.

 

[bluebonnet]

Count me in for the group rate as well. Can we get a head count started to pass on to Molly?
If you're shy, you can just PM her.

The previous post (by hubcap) quotes "bluebonnet" as writing "when that group research effort comes along, I'm in. Likewise, the group rate." For the record, I did not post this comment.

 

[Misfit Toy]

Wow! Sign me up for some stem cells. What I just read, I really liked. And Mr. Kite, I am totally with you. My father and sister died from cancer. If cancer comes my way...bring it on. I hate this illness. It would be the end of my life, but "F" it. I am not living. I have a friend with stage IV breast cancer who is traveling all over. How does she do it I ask myself? I want her life; bald, no breasts and happy with friends, trips to different islands and the energy to do so!