Stem Cells

[mojoey]

Hy Gretchen,

just wanted to let you know I'm textbook classic cfids, xmrv+, and was igenex IGM pos for Lyme per CDC criteria (the more stringent one) back in 2008, haven't retested ever since, but it's come and gone with energetic testing since then likely due to ongoing retrovirus.

 

[dannybex]

I am hoping to go, but can't do the September trip - it'll have to be later this year or next year sometime. $$$$, y'know Plus, that will give me time to assess how things are going for other folks, since I'm classic M.E. plus IGeneX positive for Lyme and 50 years old, and may be less likely to see improvement for those reasons. That being said, 'caustic' won't bother me a bit; one thing I've learned over the course of this dd is to have a thick skin and to just let things go. OK, I guess that's two things I just hope the special rate will extend to later groups.
Gretchen

Gretchen -- just wanted to let you know I have a friend who found out she had Lyme when she was about 62 or so. She also had celiac, and eliminating wheat, and going on a rotation diet helped immensely, before she even started treating the lyme. But within about 2-3 years, she was healthy, and FULL of energy. She hikes in the summer, cross country skis in the winter, and is 67 years old. Like Joey, she tests off and on to see if the lyme has come back, but not sure if she has had to treat again (using rife I think, but not sure) for the last 2 years or so. She certainly hasn't had any major crash for about 3 1/2 years.

Just my long way of saying try not to let the age thing tell you there's no hope. I've passed the half century mark myself, so I look up to several former members of my local support group (two others are 57 and 58) who have recovered...and one was ill for 17 years.

Dan

 

[soulfeast]

Thanks for the info, Chris! I am taking beta glucan.. wonder if that is effective alone and if I should take care with it as well. Will read the info. Thank you.

Hi, Soulfeast; if you look back on this thread you will find some discussion from myself and Mr. Kite on the possible dangers of taking Stem-Kine--or any stem cell mobilizer--in too high a dose for too long. The two small scale studies done--look at the website( www.stem-kine.com ) for the links--used a dose of 2 x 2 per day for 14 days; we noticed that the mobilization of one line of cells peaked at around 7 days, and then began dropping off again, suggesting that the delivery system was being over-driven. This can produce serious consequences when a much more active mobilizing agent is used, one only used under medical supervision for serious conditions.
I emailed the company suggesting that a pulsed dose might work better, say 3 capsules per day for a number of weeks followed by a pause; they replied that was possible, but had not done the research and were not prepared to advise. They suggest a dose of 2 per day, without specifying a time limit. My personal feeling is that it is probably a good idea to limit the time one takes 2 per day, and either cut to 1 or just take a break for a week or two to give the system a recovery break, and that is what I have been doing; so far my experience has been positive, without being revelatory--my blood pressure is down, my heart rate is down, I feel generally better and a bit more energetic. So I am continuing an irregular dose schedule, with periodic breaks of at least a week.
You have to realize that this is a personal decision, backed by no serious research, but it seems to be working OK so far. But finally you have to make your own decision, based on your own research and thinking!

I can think of no reason why you should not be able to use Stem-Kine without getting an infusion of stem-cells; you are simply mobilizing, swinging into more energetic action, your own stem cells, the ones your body makes all the time in limited numbers. Molly did report that the Panama clinic recommended using Stem-Kine before and after clinic infusions--not surprising, since they come from the same group of people, headed by Neil Riordan. Looking him up in PubMed might reassure you a bit--he has a lot of publications in the field, and collaborates with a substantial number of researchers at various other institutions.
Good luck with whatever you decide to do! Chris

 

[Chris]

Hi, Soulfeast; as noted earlier, beta glucans are part of several mushroom based immune modulators, and Mr. Kite's citing of an abstract above shows that they have some effect in mobilizing stem cells. Since ellegic acid and Vit D are other components of Stem-Kine, and are found in pomegranates and raspberries and fish oil respectively, both of which I also take, I do try to take this into account when dosing with Stem-Kine. So all I can do is advise caution, go slow, take breaks, and maybe get your red blood cells tested periodically--any drop would be a danger signal to stop Stem-Kine for a while.
None of the testimonials on the Stem-Kine site mention any problems, but that is not surprising; one or two do mention dropping the dose to one a day after a while. So go slow, take breaks, and take care--and I hope you have good results--let us know if you notice any changes! My improvements in blood pressure, heart rate, general feeling of well-being, and energy level are being maintained, though the changes are relatively modest so far. Best, Chris

 

[jenbooks]

Re: Cheney's gag order. It's frustrating but I don't feel we have a right to demand his patients talk. He may want to monitor them longterm using the tests he frequently relies on, before he himself draws conclusions. He has a right as a doctor treating patients in novel ways to request that loyalty from them. I might do the same myself were I a doctor. Yes I'm frustrated as a patient/observer, but I can see why he's doing it. Early conclusions could be wrong.

 

[jeffrez]

Re: Cheney's gag order. It's frustrating but I don't feel we have a right to demand his patients talk. He may want to monitor them longterm using the tests he frequently relies on, before he himself draws conclusions. He has a right as a doctor treating patients in novel ways to request that loyalty from them. I might do the same myself were I a doctor. Yes I'm frustrated as a patient/observer, but I can see why he's doing it. Early conclusions could be wrong.

Nice spin, but I never "demanded" anyone talk. I don't think actively preventing people from talking who might want to talk is helpful. Having more information is generally better than having less.

 

[dsdmom]

I agree with Mr. Kite here - I think it is ridiculous about Cheney's 'gag order.' The only reason I can see him not wanting his patients to talk about what he is doing or what they've done is so that the only way to find out is to become his patient and pony up lots of $$$ to him. I think that is wrong.

 

[mojoey]

I share Mr.Kite's take on Cheney's gag order and have made my views known several times on this thread. However, I think it is very telling that we already have ~20 CFS patients that are not cheney patients planning on going to Panama and I can count on one hand how many have posted about it or PMed me that they are going. This can't be explained by a gag order; instead, I think it's mostly due to differences in human nature. Most people simply don't wanna bother.

 

[jenbooks]

Mr. Kite, your statements equate to a demand: "If someone speaks to her, they should tell her to tell Cheney that he needs to remove this alleged "gag order" on his patients. We need that information. He didn't administer this treatment, what right does he have to administer a "gag order" on anyone?" If you wish to label it something else, that's okay, but I think my interpretation was correct.

To the others, hundreds of parents flew to China to pay $20-30K for stem cell treatments for their infants born with optic nerve hopoplasia, and some returned claiming "cures" based on small but real increases in vision or light perception. However, according to Mark Borchert, head of the vision center at Children's Hospital of Los Angeles, up to half of all children under the age of 5 with optic nerve hypoplasia improve without any treatment.

Only controlled clinical trials, therefore, could reveal if stem cells had further benefit.

I use this as an example. I'm of course not saying something stupid like, Some bedridden CFS patients would have gotten well on their own. No. I'm simply noting that patients are subjective, not objective. Hope, despair, can influence reports. It could take quite a while to know what the total improvement is, and whether it lasts. If I were the doctor, I'd ask for a gag order for a while. He tends to test in all kinds of ways. And as a patient, I find that frustrating but I understand it.

 

[jeffrez]

So your "interpretation" that put words in my mouth is more correct than what I actually said, and what I then went on to clarify? That's a mighty high opinion you have of your hermeneutical abilities.

I stand by what I said. I never "demanded" that anyone who had the cells tell us anything. I merely voiced my opinion that I don't think a gag order is helpful, and suggested that if Sieverling talks to Cheney she relay the fact to him that many of us are not thrilled with the idea of this alleged "gag order" (if it even exists. taxdoc for example doesn't seem bound by it).

 

[jenbooks]

Yes I'm more correct, as always. My hermeneutics are fantastic. You might as well admit defeat before you begin...

 

[soulfeast]

Wow and woah. Thank you so much Chris.

I have been cleaning out my supp boxes (am I the only one with several?) and found an un-opened bottle of beta glucan. Ive been taking 2 a day as per directions and am almost through this bottle.. and they do not say a thing about stem cells (but I saw this ingredient in the stem cell supp and googled about it).. just had a blood test and result pending, so thats good.. thanks so much.. i have felt better but also on abx since new tick bite and other things. Feel lighter, better, handing abx well (though could be the Bb have encysted).. but very fatigue-able and weak muscles still.

Hi, Soulfeast; as noted earlier, beta glucans are part of several mushroom based immune modulators, and Mr. Kite's citing of an abstract above shows that they have some effect in mobilizing stem cells. Since ellegic acid and Vit D are other components of Stem-Kine, and are found in pomegranates and raspberries and fish oil respectively, both of which I also take, I do try to take this into account when dosing with Stem-Kine. So all I can do is advise caution, go slow, take breaks, and maybe get your red blood cells tested periodically--any drop would be a danger signal to stop Stem-Kine for a while.
None of the testimonials on the Stem-Kine site mention any problems, but that is not surprising; one or two do mention dropping the dose to one a day after a while. So go slow, take breaks, and take care--and I hope you have good results--let us know if you notice any changes! My improvements in blood pressure, heart rate, general feeling of well-being, and energy level are being maintained, though the changes are relatively modest so far. Best, Chris

Huh.. I drink green smoothies most every day with berries listed to have ellagic acid and take krill oil if that counts, vitamin D, and beta glucan..

How often do you check your red blood cells, Chris? What kind of schedule are you on and dosing? Do you know how much beta glucan is in a pill of the stem-kline.. im having problems finding the ingredients.

Last thing.. do we know that stem cells become infected with XMRV or any other bug for sure? If thats so, the wouldnt stem cells one receives also become infected? And.. is it the stem cells in the body that heal? Does B12 heal nerve damage or are stem cells somehow involved when there is a vitamin b12 deficiency?

 

[Chris]

Hi, Soulfeast; I can't answer many of your questions--not sure anyone can (do stem cells become infected in turn with XMRV--who knows as of now? don't see why they might not, but if the stem cells repaired enough of the immune system to keep XMRV at bay....??? ). I do not know the dose of beta glucans in Stem-Kine--ask them!--and remember that beta glucans is a family, not a single entity. I have found good evidence on PubMed for the efficacy of Maitake mushroom and yeast derived beta glucans at mobilizing stem cells, but have not yet found good evidence for ellagic acid. Vit D seems to have a complex action that I do not understand--as I do not understand much of this stuff!
I don't even know whether too much beta glucans can trigger the kind of problems that too much or too long use of G-CSF certainly can. So I am just being careful, and since the AOR Immune Support I take does include Maitake and other mushroom extracts I am cautious. I do honestly wonder if taking Stem-Kine does anything that cannot be done by taking pomegranate juice, Vit D, and Immune Support; but on the other hand, they have produced that small study, and I do feel somewhat better, so shall continue taking it cautiously to see what happens, like Alice nibbling on her mushroom (if I am remembering correctly). And so far the answers seem to be positive (I am currently having allergy problems with those damned grasses triggered by recent warm and sunny weather, but that is another problem).
So I continue muddling along as best I can; will get a red blood cell test some time, but as my doc knows nothing of my Stem-Kine experiment, and would doubtless say "stop" if I told her, will have to wait a while and think of an excuse. I do wish the real pros would take over and learn to control this damned disease! Best, Chris

 

[Chris]

Working in the Dark

Hi, Soulfeast--a PS to my last post, which I hope did not sound too offensive. I think we all--or at least most of us--have to recognize that we are working largely on our own with inadequate resources of both money and information. We have a disease that noone yet fully understands, and so we follow various leaders who have shown some promise of being able to help at least up to a point. In the process I think we develop some guidelines of our own about whom to trust for a while, for part of the journey.

In my own case, I finally recognized that what I had thought was cardiomyopathy (a better diaguess than my docs were making, mind you) was really CFS--and that revelation was triggered by reading Paul Cheney's "The Heart of the Matter" around Sept. 2008. I then got his DVD, and moved in some of his directions. I read "Osler's Web," and developed more respect and admiration for the man--he may puzzle, he may disturb with his fees, but he is very smart, has been working with dedication for us for many years, and clearly has a handle on some aspects of this whole thing. So I tried Artesunate, with some mild success for a while, and then problems which I now handle by only taking it every 3 weeks or so. When he started sending patients off for stem cell infusions, I started reading--and this thread appeared and I learned from it, including Molly; Stem-Kine was named, and I chased that, found that Neil Riordan had a goodly list of publications and collaborators, decided to give it a try.

I think one works by finding leaders who are ahead of our current position, whom one learns to trust at least partially, and then cautiously testing their suggestions. But in the absence of a close personal contact with them, and in the absence of close monitoring, one has to err on the side of caution. It would be nice to work more closely with someone whom one learned to trust more in the process. But that is not happening for me so far in this field, and it does not seem likely to happen here--I am thinking about the possibility of moving, but kind of like it here, and have family here that I am fond of. So my present status is likely to continue, though I am looking for a more sympathetic and interested doc.

So please interpret my comments in that light; I am reasonably smart, and can use the net, but do not really understand this stuff--upon which there is often no current concensus anyway--for instance, there is ongoing discussion about whether some stem cell lines are really destined to move and differentiate in only one direction, or can in fact shift focus and differentiate into quite other directions. I do have a couple of books on order--it is a fascinating field, and does hold real hope for us and for others. But for the time being, reasoned and rationed trust is the only guide we have; if Cheney selected that Panama clinic, and met with those who run it before sending patients there, it acquires some substance in my eyes, though that German clinic also looks good to me.

In any case, it would be good to have more notes from more users of Stem-Kine and the other stem cell mobilizers on their progress, in addition to info from those brave enough to actually go down to Panama or elsewhere to get infusions; we can educate each other up to a point. The ups and downs associated with the progress of this disease make it very difficult to be confident that one is really measuring the effects of one intervention, but we must do the best we can--that is all we have. And hope that the real researchers keep making progress.
Best, Chris

 

[soulfeast]

Thanks, Chris.. you didnt sound offensive. I think I see what you are saying and thank you for your warnings. Seems there is no good clear info and we have to make the most of it. I will call Stem-Kine and ask.. doubtful they will reveal how much BC.. will also call Transfer Factor where I got my BC (frm yeast). They dont mention a thing about stem cells on their website and I wonder if they are aware.. you would think so.. Thanks.

 

[jonc]

Doesn't Sieverling know Cheney pretty well? Or does she just transcribe his talks? If someone speaks to her, they should tell her to tell Cheney that he needs to remove this alleged "gag order" on his patients. We need that information. He didn't administer this treatment, what right does he have to administer a "gag order" on anyone? It's their money and their treatment - imo they have a right to say whatever they want to about it. I don't even believe he actually needs to "release" them from anything, because he didn't administer the treatment. If a gag order does in fact exist, most patients probably think they are bound by it, though, and they might need to hear it from him. Because out of 33, we only have reports on 3? Or 4? We need to know how all 33 are doing. It's unethical to hold back that information from the public. Since it's not his clinic and not his treatment, I don't believe he has a right to gag order anybody.

It seems odd to be complaining about a "gag order" that you don't actually know exists. What makes you believe that Dr Cheney would impose any such thing on his patients (not that I even believe such a thing is legally possible)?

Perhaps they simply don't want to discuss their personal medical details with you or anyone else they don't know.

 

[jeffrez]

It seems odd to be complaining about a "gag order" that you don't actually know exists. What makes you believe that Dr Cheney would impose any such thing on his patients (not that I even believe such a thing is legally possible)?

Perhaps they simply don't want to discuss their personal medical details with you or anyone else they don't know.

We've been told it exists many times. Did you read the thread?

Perhaps they don't want to discuss anything, and no one says they have to. That's not the issue. The issue is a "gag order" on people who might want to discuss their experiences but feel they are prevented from doing so because of a "gag order."

It seems odd to be complaining about what I said when it possibly would only mean more information for everyone. Doesn't it? If you are skeptical of a gag order existing, why don't you question the people who claimed there was one? The story didn't originate with me by any means.

 

[Chris]

Beta glucans and choices...

Hi; here are a couple more abstracts suggesting that beta glucans really do help mobilize stem cells:
1. Blood. 2006 Jan 15;107(2):835-40. Epub 2005 Sep 22.
Beta-glucan enhances complement-mediated hematopoietic recovery after bone marrow injury.
Cramer DE, Allendorf DJ, Baran JT, Hansen R, Marroquin J, Li B, Ratajczak J, Ratajczak MZ, Yan J.
Tumor Immunobiology Program, James Graham Brown Cancer Center, University of Louisville, 580 South Preston St, Louisville, KY 40202, USA.
Abstract
Myelotoxic injury in the bone marrow (BM) as a consequence of total body irradiation (TBI) or granulocyte colony-stimulating factor (G-CSF) mobilization results in the deposition of iC3b on BM stroma (stroma-iC3b). In the present study, we have examined how stroma-iC3b interacts with hematopoietic progenitor cells (HPCs) and the role of complement (C) and complement receptor 3 (CR3) in BM injury/repair. We demonstrate here that stroma-iC3b tethers HPCs via the inserted (I) domain of HPC complement receptor 3 (CR3, CD11b/CD18, Mac-1). Following irradiation, stroma-iC3b was observed in the presence of purified IgM and normal mouse serum (NMS), but not serum from Rag-2(-/-) mice, implicating a role for antibody (Ab) and the classic pathway of C activation. Furthermore, a novel role for soluble yeast beta-glucan, a ligand for the CR3 lectin-like domain (LLD), in the priming of CR3(+) HPC is suggested. Soluble yeast beta-glucan could enhance the proliferation of tethered HPCs, promote leukocyte recovery following sublethal irradiation, and increase the survival of lethally irradiated animals following allogeneic HPC transplantation in a CR3-dependent manner. Taken together, these observations suggest a novel role for C, CR3, and beta-glucan in the restoration of hematopoiesis following injury.
PMID: 16179370 [PubMed - indexed for MEDLINE]PMCID: PMC1895628Free PMC Article
And:
1. Int Immunopharmacol. 2004 Jan;4(1):91-9.
Maitake beta-glucan MD-fraction enhances bone marrow colony formation and reduces doxorubicin toxicity in vitro.
Lin H, She YH, Cassileth BR, Sirotnak F, Cunningham Rundles S.
Integrative Medicine Service, Memorial Sloan-Kettering Cancer Center, New York, NY, USA.
Abstract
Previous studies have indicated that MD-fraction (MDF), in which the active component is beta 1,6-glucan with beta 1,3-branches, has anti-tumor activity as an oral agent and acts as an immune adjuvant. Since some other beta glucans appear to promote mobilization of hematopoietic stem cells, the effects of a beta glucan extract from the Maitake mushroom "MD-fraction" on hematopoietic stem cells were examined in a colony forming assay. Here we report for the first time that MDF has a dose response effect on mouse bone marrow cells (BMC) hematopoiesis in vitro. Using the Colony Forming Unit (CFU) assay to detect formation of granulocyte-macrophage (CFU-GM) colonies, and the XTT cytotoxicitiy assay to measure BMC viability, the data showed that the addition of MDF significantly enhanced the development of CFU-GM in a dose range of 50-100 microg/ml (p<0.004). The mechanism of action included significant increase of nonadherent BMC viability, which was observed at MDF doses of 12.5-100 microg/ml (p<0.005). In the presence of Doxorubicin (DOX), MDF promoted BMC viability and protected CFU-GM from DOX induced toxicity. In addition, MDF treatment promoted the recovery of CFU-GM colony formation after BMC were pretreated with DOX. These studies provided the first evidence that MDF acts directly in a dose dependent manner on hematopoietic BMC and enhances BMC growth and differentiation into colony forming cells.
PMID: 14975363 [PubMed - indexed for MEDLINE]

So beta-glucans from some sources seem active in helping stem cells. Either Stem-Kine or AOR Immune Support, or a Maitake mushroom or extract ( I think there is one ) should be of some help. If I find something on pomegranate or ellagic acid I will post.

But I want to pursue an issue that arose between myself and mJoeythe question of trust in the seller vs. research into the product as motive for choosing a product. I take his point that one should research for oneself, and not be too put off by questionable selling tactics. I have ordered Steenblocks book, and will read with interest what he has to say about nutritional factors in stem cell mobilization.
That approach, however, works best in a situation where one feels secure competence in understanding and evaluating research for oneself. That is not my case when reading about stem cells, and I suspect that is the case for many of us, though clearly there are members posting in this forum who have a much better understanding of this stuff. I feel that in my situation, trust has to play a role, and since I trust Paul Cheneys judgement in these matters much more than my own, I will stick with his choice until and unless some new discovery changes my mind.
We have to try to navigate between the Big Pharma restrictive views of the FDA, and the potential chaos of an open and unregulated market. I for one need all the help I can find to steer my own path, and so will take account of what I can find out about the seller, as well as investigating as best I can his product.
Best, Chris

 

[Chris]

Mr. Kite, I agree totally--though I just don't know how much the particular mix and processing used by SK adds to the brew; they say "fermentation of a combination of green tea, astralagus, goji berry extracts, with food derived lactobacillus Fermentum together with ellagic acid, beta 1,3 glucan and vitamin D3"--just don't know what the mix and the fermenting does. However, my experience does seem to suggest that this stuff is doing something for me, and it is not much more expensive than the AOR Immune Support magic mushroom mix, so...
The other question--could taking this stuff continuously produce the kind of problem you encountered (and thanks for telling us about that-- you taught me something)--again, I just don't know; maybe it works through a different route than the much more potent stuff you took. But the graphs they provide do raise the suspicion that it might, though I would imagine at a much lower level of intensity. I think I will email them again--as I think I posted, I did pass the suggestion to them that maybe it would be better to pulse the stuff, but got a nebulous answer; I think I will try again with a more focused question.
Yet I do think I am making slow and uneven progress--this morning I walked 17 mins pretty briskly, and have no significant PEM--that is an improvement over recent figures!
And my BP has definitely improved, and become more stable--it had a nasty habit of zooming really high with PEM after a tiny over-exertion (by my current pathetic standards). So something seems to be working on my cardiac / circulatory system, which is where one would expect the most noticeable effects. So I will keep on keeping on, with week long breaks after 3 weeks or so just in case, unless we get more specific info from the company. I will write today, and report any response. And I hope if some are trying the other mobilizer that they will report any results, including nulls.
And maybe Panama in the future--perhaps....
Best, Chris.

 

[jonc]

We've been told it exists many times. Did you read the thread?

Perhaps they don't want to discuss anything, and no one says they have to. That's not the issue. The issue is a "gag order" on people who might want to discuss their experiences but feel they are prevented from doing so because of a "gag order."

It seems odd to be complaining about what I said when it possibly would only mean more information for everyone. Doesn't it? If you are skeptical of a gag order existing, why don't you question the people who claimed there was one? The story didn't originate with me by any means.

So, it's an unsubstantiated rumour then.