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Stem Cells

Discussion in 'General Treatment' started by deb obrien, Aug 13, 2009.

  1. jenbooks

    jenbooks Guest

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    Ben, thanks for updating us. I'm sorry that you had no response to stem cells, and it seems strange, given that generally there have been good responses and you're young. Maybe Ampligen will get fast tracked and you can get on that.
     
  2. mojoey

    mojoey Senior Member

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    Hey Ben,

    Thanks for updating us despite your not feeling well. I wonder, again, if XMRV was a huge factor here. The latest Ruscetti study (presented at NIH conference) found that XMRV was able to infect and replicate in non-dividing cells whereas MLV was ONLY able to infect and replicating in dividing cells. This suggest stem cell mitosis is a crucial area to look into.

    Hopefully the improvements have yet to come. Some feel worse before they get better, and you're still halfway to the 6month mark. If it doesn't pan out, then perhaps once you start XMRV treatment (whatever that may be), the new stem cells will start to exert benefits like modulation and tissue repair. After all, they don't just disappear after 6 months; after a saturation point is reached, they just go back to your bone marrow! Since we all have finite amounts of stem cells without transplantation, I don't think this wasn't a waste of money for you in any scenario.

    best of luck,
    joey
     
  3. Michael Dessin

    Michael Dessin Senior Member

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    I agree Joey, Hang in there Ben...try not to think to much about future treatment at this point....any tx, including stems will take some time to

    show benefits.
     
  4. Chris

    Chris Senior Member

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    Ben, very sorry to hear you are not doing better; but as several suggest, give it more time before deciding on the outcome--people have reported long periods of feeling wiped out before improvement began. We will all hope with and for you. Best, Chris
     
  5. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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  6. Chris

    Chris Senior Member

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    Hi, Ggingues--thanks (I think) for this link--the next big move must be to have both the CDC and FDA either shut down or radically redesigned--our Canadian Health people are nearly as bad, of course.... Just reading Devra Devlin's new book, "Disconnect," about the suppressed dangers of cell phones, though there is a chapter on that already in her terrific "The Secret History of the War on Cancer"; government agencies in both, and indeed most, countries are now much more involved in protecting business interests than in the health of the public. But what to do? We are between the rock of unregulated business and the hard place of over-regulated big government; neither really gives a damn about us, the public.

    The good news comes from financial consequences (only after the damage has been done, of course); insurance companies are balking at insuring cell phone companies against future law suits, and the blood agencies are scared of what XMRV may bring in the way of law suits.... Money does talk, though it is not in the language of human bodies and health.
    Best, Chris
     
  7. foggyfroggy

    foggyfroggy

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    New Cheney Newsletter

    It looks like Cheney finally has a report on his Stem Cell folks - does anyone here pay the big bucks to subscribe to his full newsletter?
     
  8. mojoey

    mojoey Senior Member

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    Hey Mr.Kite,

    Molly got stem cells before all this XMRV stuff blew up, so she wasn't able to test for it. I'm pretty sure she has yet to. She went in October/Nov, right around the time the XMRV discovery was announced. I'm finding that the people that are more or less recovered (slayadragon, Molly, mike dessin) just aren't in a rush to test, which is understandable. Don't think I'd be all that keen on shelling out 600 bucks for a newfangled test if I were recovered.

    In any case, Molly is not a physician, and even if she were my physician that wouldn't excuse me from doing my own research. As things stood, her responsibility in organizing the trip was just that: to organize. In addition, she discussed her experience and conversations with people knowledgeable about stem cells (whom did not highlight the risk of XMRV at the time, might I add), and she had all the reason to tout stem cell therapy based on that. Ultimately, It's our responsibility to filter out the risks involved. Ben knew he was XMRV+ and I'm pretty sure he was aware of the risks involved, and made a calculated decision to go. As soon as I figured out that XMRV might be a distinguishing factor in stem cell therapy outcome, I discussed it on this thread and announced that I was no longer going. By now Cheney has said as much publicly.
     
  9. slayadragon

    slayadragon Senior Member

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    Okay, I see my name here, so that means I get to discuss the point.

    I said that Mike Dessin's place in Columbus was surprisingly good in terms of biotoxins. The house itself is excellent. The outside air in almost all of the Midwest (at least in mid-summer) really sucks, but his house is at a higher altitude than most of the surrounding area and thus not too terribly bad much of the time (though I was much better inside with the HEPA system running than outside). And since Mike got rid of all the stuff from his old moldy apartment right before he started neural therapy, the cross-contamination that plagues many ME/CFS sufferers as they try to get clear of mold has not been an issue for him.

    (While I was visiting, Mike got out a box of stuff that he'd kept from his old moldy apartment. He gave me some papers to read without telling me when they were from, causing me to feel bad right away. Fortunately, I know how to stop the reaction by decontaminating - changing clothes and showering - since otherwise I'd have been sick for quite a while just from the papers. Never underestimate the power of the "stuff factor"!)

    Joey, Columbus, OH, is not what I would consider a "good location." Maybe it's not the worst place in the world, but it's not very good either. I don't know what the outside air near your apartment in particular is like. I don't know what the inside of the apartment is like. I don't know whether the stuff that you've brought with you from previous places that you've lived is problematic.

    So I can't say whether or not biotoxins are a problem for you, in your current environment. They could be a huge problem, as far as the info that I have goes. When I asked Mike how your place felt to him, he just said, "It's not as good as this place." Which, all by itself, could mean that it's not nearly good enough to get you on the road to recovery.

    I've not been able to get from Jamie specific information on whether or not the place they lived at near the Berkshires had mold in it. She may not know, or maybe she prefers not to share that info. Three out of four of their family members got sick with Lyme there. It could just be that Lyme was really fierce there, and that XMRV was making that problem worse. My suspicion, when I see cases like this, is that a moldy house might be causing people's immune systems to not be able to keep the pathogens (both XMRV and Lyme) in check, but I don't have any evidence of that.

    The family moved to Arizona nearly five years ago. They then moved to New Mexico. The air where they're at is not perfect, but it's far superior to anything I've found in the Midwest. She says she's looked hard for mold in her current house and believes it's good. Erik says that possessions die down from mold toxicity in about five years, especially if the air is dry and hot (which it is in the SW).

    So I can't say for sure that Jamie's living in a good environment. I would guess that it's not a pristine environment (meaning one that is equivalent to "extreme avoidance" all by itself). But the possibility that the environment she's in is in the top 5% of those inhabited by ME/CFS sufferers in general does not seem to me to be wholly unlikely, considering the information that I do have.

    I don't know enough about antiretrovirals to be able to judge whether theoretically this treatment should be working for them. Clearly it is working though.

    I kind of think we can drive ourselves crazy trying to parse out every little biochemical link that might occur. As Dr. William Rea suggests in his excellent new book ("Reversibility of Chronic Degenerative Disease and Hypersensitivity: Regulating Mechanisms of Chemical Sensitivity"), it seems to me that ME/CFS and other sorts of illnesses related to and/or caused by toxicity function much more like an "open system" rather than a classical "cause and effect" model.

    In an "open system," everything has an effect on everything. If you can subtract anything bad, everything gets better. If you add anything bad, everything gets worse.

    That's what Dr. Dale Guyer (who is an excellent intuitive clinician) tried to tell me a couple of years ago. His thought was that it doesn't matter what pathogen or what toxin you address. Just work on the entire load and eventually things will get better, he said.

    The reason that he got excited about my extreme avoidance was not because I was able to do be well as a result of doing that (he actually fairly strongly disapproved of the tent in the desert thing as a solution), but because it allowed me to effectively work on detoxifying and killing pathogens while I was really clear. Most ME/CFS patients could get well if they got their general toxin and pathogen levels down low enough, he said. The problem is that they're too sensitive to be able to do either of these effectively, without destroying their system strength in the process.

    What I wonder increasingly is whether Jamie and Ali might be benefiting from the drugs they're taking not because the drugs are addressing the retrovirus specifically, but because they're reducing their general pathogen load at the same time that they're pursuing detoxification.....and doing those things in a place that's good enough to give them what I've previously referred to as a "leverage point" or "control point."

    So far, their experience sounds just like mine - a combination of biotoxin avoidance, methylation/detox support and pathogen killers.

    They (I am going to posit) in a good place. I was in an excellent place. (Ali's taking Actos is basically Shoemaker's recommendation on how to transform a good place into a very good place.)

    They're taking a combination of Metafolin and B12, which I've also used.

    They're taking antiretrovirals (and have done Lyme treatment). I'm taking herpes antivirals (and have done Lyme treatment).

    I tend to think, reading this, that the HAART drugs work a bit better than the Valcyte/Famvir combination I'm using. They showed improvements faster and didn't have to be in as good of a place while they were using them.

    But I'm not at all convinced that the HAART drugs work DIFFERENTLY than the Valcyte/Famvir combination, in terms of the question of "Why are they getting better?" It may not be that the drugs are working the way that you think they should be (or shouldn't be). Maybe it's just that with fewer total stresses (pathogen and toxin) on it, the Ground Regulation System settles down and things start to right themselves.

    This is actually really good news for them if I'm right too.

    If the HAART drugs are working the way that you think that they should (or shouldn't), that means staying on the drugs forever. Kind of a drag.

    But if what we're trying to do is to reverse a messed-up homeostasis, there's a potential for real healing to occur.

    At some point, if you can chip away enough toxins and pathogens, the body should start working on its own again, as it did before it got thrown off track. If you can do that - and if you can identify the factors that caused it to initially get off track and then avoid them - hopefully it will stay there even without the drugs.

    I think in my case, the primary factor that caused me to get off track was the mold exposure. If I can get the toxins and pathogens that accumulated as a result under control, and not move back into a mold pit, perhaps I will be able to stay well permanently.

    I think that Dale is right about the extreme avoidance not being a good permanent solution. It hopefully is just something that needs to be done to get a foothold.

    I had been corresponding periodically with Jamie about her progress and was going to suggest that maybe she pursue the methylation stuff. But she figured it out herself. That doesn't surprise me entirely, because she seems to have gotten to the point where she's thinking integratively (in the true meaning of the word). It's not a matter of using one tool to solve the problem - it's playing with each piece, carefully, to move everything from a dysfunctional homeostasis back to a functional homeostasis.

    Most people don't know how to do this. It's not how we're taught. It requires a lot of knowledge, both in terms of academic knowledge and intuitive knowledge. It's interesting to me that Jamie's historically practiced complementary medicine, because it seems to me that even though she's using drugs, she still has that "fiddle with it until it feels right" mentality. And that, I think, may be part of why she's succeeding while other people are not.

    That, and (I'm postulating) living in a good house in a good desert while she's in the process of getting well, of course.

    Is restoring the functional homeostasis what stem cells would do? I'm not sure what the mechanism is, but it seems plausible to me in terms of the general principle.

    One thing I wonder is whether the stem cells might clear out the fascia. Mine being so gummed up has been a tremendous barrier to getting well. Neural therapy has helped (in combination with the additional three factors of being in a good place, killing bugs and removing toxins), but it's quite inefficient.

    Dr. Rea's comments about how the period when the "gel/sol" consistency of the system turns into "styrofoam" being a major permanent shift hit home to me. Getting that part of the system to become nice and evenly flowing is really hard to do. If stem cells did that, I'd go get them right away, since (with the other things I'm doing) I'm in the position to benefit from that improvement (and not to mess it up again by inadvertent additional toxic exposures).

    Maybe you should try reading Dr. Rea's book. It's the first thing that I've found that explains why neural therapy can be so important, and has been really useful to me in terms of consolidating my own thoughts about what's going on.

    Best, Lisa
     
  10. mojoey

    mojoey Senior Member

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    Hey Lisa,

    I also don't know for sure whether my place is ideal for mold, but my c4a dropped from 28000 in '08 (when I was living in Santa Monica, CA, considered a generally good location for mold) to 800 this year, so I'm inclined to think that my mold-related inflammation has dropped dramatically this year. Also I remember you mentioning that one way neural therapy might work is by lowering mold reactivity and aiding detox of mold toxins. Given that I did this treatment 2x/week for almost 6 months without any symptom resolution, it makes much more sense to me that anti-retroviral therapy is the missing piece.
     
  11. slayadragon

    slayadragon Senior Member

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    Yes, that's consistent with my experience. After I left the moldy house, I got a bit better in various locations that (in retrospect) were pretty good. It's just that at the time, my system was so shot that unless I was in the most pristine place on the face of the earth, everything stayed really messed up. Just the tiniest little nudge would throw my whole system off balance.

    I had let go of lots of toxins by then, but that in itself didn't make me feel better. It was an endless slog. It was only when I started working on the viruses that I made improvements. And (as with Jamie and Ali), it took a long time. Longer for me than for them, which makes me think that the HAART drugs are better but not necessarily the only solution.

    It could have been that heavy antibiotics at that point would have helped. Maybe it really is pathogenic load, in general. Or maybe it's specific to viruses, but not retroviruses. All I know is that if the only way to get better was to attack the retroviruses directly, I'd not have gotten better because I've not done that. Ditto a couple of other people (the case studies I'm doing) that have gone after this is in the same way.

    Are you going to try viral treatment (non-homeopathic)?

    Never underestimate the extent to which our systems are toxic, btw. Just because you've excreted more toxins than you'd think that the body could possibly hold does not mean that there's not a WHOLE lot more left.

    This is a very scary disease in terms of that.

    You really would like Rea's book, I think. I would like to get your thoughts on it anyway.

    RE the C4a: Shoemaker acts like it's an infallible marker, but the reports I've gotten from people suggest much more that it bops around rather randomly from test to test session. A very high number like yours was suggests mold exposure, usually. But I've talked to people with ME/CFS who knew they were living in a bad place that had it come up as bad most of the time and normal occasionally!

    So I don't quite know what to make of your drop. It's not necessarily indicative that you wouldn't be doing a lot better in a better place though. (Not talking tent in a desert here.....just really good in a "normal good" way, like Mike's place.)

    Best, Lisa
     
  12. soulfeast

    soulfeast Senior Member

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    c4a is not static. it has to be initiated over and over so maybe thats why it can "come and go." when i was in stachy house, there were times my body felt much calmer and even alot less gummy as you say.. then symptoms back up again, body on fire, pain, gumminess extreme.. i think the anaphylactic like feeling i was having was most likely c4a rising.. possibly spores and the rest of the mold strew have cycles. i read on pat sullivans blog, and i dont know where he gets his info, that tgf-b1 is a better marker, but a fall from 28000 to 800 sounds pretty remarkable to me. whats the c4a range for moldy people? 800 seems very low. what is a typical c4a range for a moldy person? c4a is also high in folks with lyme and according to shoemaker sits between 9000 and 10000 for folks with chronic lyme average.

    the retrovirus results in certain cytotokine responses, right? then it seems for at least some people, calming the body down might include addressing the retrovirus. Its acting like a toxin in a sense? i wonder how many people (the few?) who have had significant symptoms relief from mold avoidance also have xmrv?
     
  13. johnwfalk

    johnwfalk

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    Is this stem cell thread no longer in use??? Is stem cell therapy still considered an option?
     
  14. jeffrez

    jeffrez Senior Member

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    I see this thread has come up again, so against my better judgment I'll just point out your faulty reasoning.

    But that has nothing to do with what I said, and it's not relevant anyway. "Molly" touted herself as the 'expert' on the stem cell therapy, the one who had done it and who had spoken to cheney and who knew the guy profiting from it (errp, *conflict of interest* :-o). The sales pitch she was giving to all of us was months *AFTER* xmrv had been detected and reported and known about.

    So if a person is such an expert in the therapy - the one we were all told we should contact with any questions because she knew the deal - any reasonable person would expect info on XMRV to be provided along with all the hyperbole. That's one reason I started to suspect this was... well, I guess the "S" word is not allowed here... so let's just say it's one reason why I suspected this stem cell therapy might not be all that it was being promoted as being for all people in the way it was being presented. <errp>

    No shit she's not a physician, so I don't really know why you all put so much stock in this one anecdotal report that by most reports is completely anomalous anyway. Maybe by now enough time has passed where people can start seeing through the voodoo nnd their own wishful thinking, listen to someone who is cutting through the bull, and come to their senses a little bit. I've given more to this forum in terms of time & effort than "Molly's" hit-and-run sales pitch, so if that's the basis for evaluation you're using, you should be giving me even half the amount of blind devotion and respect you're giving this "Molly" person.

    Btw, another thing "Molly" told me - not sure if she mentioned this to anyone else - is that she once had had a remission from "being in love." Okay, well that should be enough to tell anyone that she is probably dealing with a different form of the disorder than most of the rest of us. If a person can go into remission from just a normal neurochemical change, then it's only reasonable to wonder if in "Molly's" case there might have been either A) some placebo effect involved, or 2) some other change in the neurobiology based mostly on belief in the treatment, "wanting to believe," etc. Not saying it's solely psychological, but let's face it, most of us are not going to recover by "being in love." That's worse than what the CBT psychologizers say anyway. Let's not be ridic.
     
  15. jeffrez

    jeffrez Senior Member

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    I wouldn't w?a?s?t?e? spend my money at this time on a therapy from which most reports show either no benefit, a short-lived benefit lasting maybe 6-12 months requiring more 'recharges', or a rare total and complete cure if you're fortunate enough to know the guy who is making all the money from providing the therapy (which is all just a coincidence, let me say for the record *cough*). But that's just me. If anyone wants to spend their money, don't let me stop you. I'm just saying that I wouldn't do it (if that's allowed to be said here - not sure contrary/rational opinions are always so welcomed).
     
  16. johnwfalk

    johnwfalk

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    how has your treatment gone? Did you go down to CR or Panama?
     
  17. johnwfalk

    johnwfalk

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    Yeah, I see you were into possibly doing it one point - and then became big time critical of the procedure, or at least touted benefits here. Thanks for input, appreciated. Where did Molly go? Any you ever here of actual have a sustained remission?
     
  18. jeffrez

    jeffrez Senior Member

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    An atmosphere was created here that discouraged asking actual questions about motives, affiliations, contradictions, etc. No one was allowed to question the "leader" ("Molly") and anyone who did was attacked by the group pretty strongly. We were all supposed to just go along with whatever "Molly" claimed her story was, while at the same time out of the other side of their mouths people would say, "of course we all have to do our own research."

    To me doing research means asking questions, and not just about the treatment itself -- which anyone can do very easily with google -- but about the players involved and everything that was being presented to us about this "miracle therapy." But that wasn't allowed. If you go back and look, you'll see that I was really ripped into pretty outrageously more than once merely for raising what appeared to be just some ordinary, reasonable questions.

    At least one person here has now spent the $10+ grand and at last report has gotten absolutely no discernible benefits from the treatment. If anyone wants that to be them, then go right ahead. I'm not going to say "I told you so," because I am not really doubting that the treatment could, in some cases at least, have some positive benefits. Maybe even very positive benefits. In most cases so far, it appears that even very good results tend to decline over time, but it's possible there could be exceptions - obviously there are a lot of individual factors involved - and a lot might have to do with age factors beyond our control, also.

    But my point is not really about the treatment so much as how it was presented by "Molly" and enforced by the group. We were all expected to pay deference to this person who was strongly implying, if not explicitly saying, that it was more likely than not that we would have similar benefits that she claimed she got (before she disappeared into the ether - if that doesn't raise red flags for anyone, I don't know what would. Guess she's been busy with her 'conference calls'). And not just any random person, but someone who knew and had ties to the guy who was actually profiting from providing the therapy. When you pair that up with an atmosphere that discourages questioning the leader, that's usually a recipe for being taken.

    But again - don't listen to me if you don't want to. Feel free to pursue any treatment you want. I'm just giving my personal take on it.
     
  19. VeganMonkey

    VeganMonkey Senior Member

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    I have been reading through this thread a bit but it's rather old. Is there a new one on stem cells? I am curious to hear from actual patients.
     
  20. sweetlily

    sweetlily

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    Does any one know if Stem Kine would promote viruses or lyme or other opportunistic life forms? thanks.
     

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