Stem Cells

[mojoey]

Hey Rrrr,

I just started the cell-signaling factors a few days ago. The heart/brain/pancreas one seems to benefit me somewhat (I accidentally ODed at about 10 times normal dosage transdermally and I felt a surge of energy that I haven't experienced in months, not much effect at the daily dollop he suggests), the liver/kidney may help me sleep deeper but not much. Not doing the artesunate though, gut protocol has been ongoing for years. I have to say it's a godforsaken shame that Cheney basically has a monopoly not only on information but these cell signaling factors, whether or not they help. The fact that patients are wondering if their lack of access to CSF should throw a monkey wrench in their going for stem cells just shows you how much unwarranted control Cheney has over our decision-making.

I do have MCS, but not extremely severe. I can't do any chemicals (dry-cleaning, perfumes, detergents, paint) without feeling like my lungs are collapsing, can't walk in most aisles of a non-MCS-friendly grocery store. I think it's one of the symptoms (along with gut inflammation) that's gotten the worst in the last year or so.

 

[Rrrr]

okay, i have a lot to learn if i am going to do this. i have no idea what the cell-signaling factors are, nor what cheney's particular gut protocol is. (my life had not allowed for much more than survival lately, and a driven need to keep up with xmrv info. so i have not researched cheney's lastest thinking.)

it will be good to hear, after a few groups go down to panama, who does better and who does not, not just re: age and level/extent of disability, but which folks had done cheney's pre-protocol and which folks did not.

my doctor likes to remind me often that the pioneer doctors tend to be more rigid about their protocols, and then subsequent doctors who follow in their path get more relaxed and the protocols become less cumbersome. so i guess time will tell if the pre-protocol is a pioneer's rigidity or an actual necessity.

rrrr

 

[slayadragon]

Hey Rrrr,

I just started the cell-signaling factors a few days ago. The heart/brain/pancreas one seems to benefit me somewhat (I accidentally ODed at about 10 times normal dosage transdermally and I felt a surge of energy that I haven't experienced in months, not much effect at the daily dollop he suggests), the liver/kidney may help me sleep deeper but not much. Not doing the artesunate though, gut protocol has been ongoing for years. I have to say it's a godforsaken shame that Cheney basically has a monopoly not only on information but these cell signaling factors, whether or not they help. The fact that patients are wondering if their lack of access to CSF should throw a monkey wrench in their going for stem cells just shows you how much unwarranted control Cheney has over our decision-making.

I do have MCS, but not extremely severe. I can't do any chemicals (dry-cleaning, perfumes, detergents, paint) without feeling like my lungs are collapsing, can't walk in most aisles of a non-MCS-friendly grocery store. I think it's one of the symptoms (along with gut inflammation) that's gotten the worst in the last year or so.

Dr. Guyer told me that he has access to a "competitive" version of the cell signaling factors. So at least folks do have an option to get the magic buffalo cream.

I've yet to hear of anything that any other doctor's doing that he hasn't been able to get and isn't willing to try. And often (as with the MSH that Dr. Shoemaker was lamenting over for a while) he can get things that nobody else seems to be able to.

Best, Lisa

 

[dipic]

Just a little fyi, Dr.Paz, the medical director at the Panama SCI clinic told me Cheney's protocols certainly weren't essential and that the patients who followed them didn't seem to do noticeably better (or worse) with their stem cell treatments.

But, with such a really small patient group to study (and whose info we have no access to anyway), who knows.

 

[redo]

Did the guy you know have CFS?

The 60 Minutes story was about ALS, Parkinson's, and those kinds of neurological diseases that are different than immune system and blood/bone marrow problems, including leukemia. I think cord blood stem cells are blood forming cells and can have an impact on blood cancer and immune problems. But I could be wrong.

This guy, however, says he was cured of his lymphoblastic leukemia with cord blood stem cells:

http://www.youtube.com/watch?v=4mJTTLNwpmo

I actually know two guys. They both had ALS like symptoms, and they both didn't improve. One of them could afford it, one had to rely on the community.
Like they said in the 60 minutes, stem cell therapy is used for leukemia (which I am sure you know means blood cancer), but if it's supposed to work for different variances of leukemia, I don't know. I haven't dug deep into it.

But anyway, what I do know is that many cures work without any basis in logic at all. My god father had serious cancer, and got well going to a "healer". And I know others (who I don't know personally) who have got well after doing other therapies such as cult like classes in how to get rid of the disease (which costs a fortune).

I am not a proponent of either going to cult like classes, or visiting healers. I know there's not even a slight chance it would work for me, because the power-of-placebo only works when you believe something is going to happen. If you really believe it, in many cases you'll get a really strong placebo effect. And I don't believe in anything that doesn't make sense.

I am sorry to say it, because stem cell therapy offers a lot of hope to many CFS patients. But I think it's not doing any good besides giving a strong placebo effect, and getting people broke.

 

[slayadragon]

Placebo Effect

I am sorry to say it, because stem cell therapy offers a lot of hope to many CFS patients. But I think it's not doing any good besides giving a strong placebo effect, and getting people broke.

It's generally accepted to be the case that the "placebo response" in CFS is lower than in most other diseases.

(That actually was a formal conclusion of one of Simon Wessely's studies, though I do hate to give him credit for anything. His spin on the finding was that we all had bad attitudes.)

Basically, we all can get all kinds of treatments and never get any response at all. Or the response that we do get fades away within a very short period of time.

It's interesting to think that stem cells would be an exception to this general rule.

It's a big investment, but other CFS treatments are too.

It's experimental, with less credibility behind it of something that "should" work. (In fact, most of those people who are pursuing it seem to be expressing a lot of doubt about whether it's going to work.)

The theory of why it should work remains obscure.

Its main proponent is Paul Cheney, who has a certain reputation as doing interesting work but not as having the "answers" for CFS.

It seems to me that the expectations for the stem cells are far higher than they are for other treatments.

If people take a pill that's supposed to address XMRV and get even a tiny bit of improvement, that's often viewed as a success.

But I'm getting the feeling here that unless stem cells result in a permanently life-changing improvement, they're not going to be viewed as much of anything.

Certainly, people may not get any better from this treatment. Or they may get better and then relapse.

But if they do get better, I see no particular reason to ascribe the improvements to placebo effect.

Best, Lisa

 

[mojoey]

Hi Lisa,

I like your thinking. I also think stem cells have been given disproportionate weight as the next greatest thing. I think there is some basis to it though. I believe before stem cells, cheney cured a total of 1 person in his entire career (he famously put up 1 finger at a conference--can't remember which one). Then stem cells come along and he triples that cure rate within 1 year.

I can only think of 3 actual mono-therapies that have brought about recoveries that have been made public: 1) ampligen (albeit temporary), 2) antivirals, and 3) stem cells. I would throw neural therapy in there but I do not consider it a mono therapy but more of a change-as-we-go whole-body-therapy. XMRV puts a monkey wrench in therapy #2, Peterson implied ampligen wouldn't cure me since I had XMRV, and stem cells has been shown to reverse XMRV from pos to neg.

I would say the basis for rational hope is there, which inevitably leads to some irrational exuberance for people that haven't been breaking it down for the last year and enter this stem cell thread after 400 posts and see an entire group of PWCs heading to panama for some odd reason.

I also wanted to add that the reasons why it should work are actually not that obscure. After reading about bone marrow stem cell mobilization, it is easy to see why adult stem cells at large (and even more so umbilical given some pluripotent characteristics) have the potential to repair just about any area of the body that needs repair. I would argue that the theory for why it would work for any disease is clear, but the practice will be hard to hammer down given differing qualities and types of stem cells (and also stem cells conferring various immunities).

 

[dipic]

I am sorry to say it, because stem cell therapy offers a lot of hope to many CFS patients. But I think it's not doing any good besides giving a strong placebo effect, and getting people broke.

I'm sorry to say it, but a placebo effect isn't going to turn someone from XMRV positive to negative (not that, as someone already pointed out, a placebo effect really makes a big difference with CFS patients anyway.)

Please read further through the thread if you haven't already. We aren't fools. We've done the research.

 

[mojoey]

Hey mr.kite,

how'd you figure out you suffered bone marrow and g-csf damage? I also have classic markers of immune dysfunction wbc in 3's to low 4's, subnormal neutrophil count, low NK cell count and NK cell cytoxicity, rnase-L dysfunction, high IL-8. All of these are markers that haven't budged in years.

Also, i hope there are more xmrv pos people going. So far I believe it's dipic and myself (please correct me if there are more).

 

[dhearns90]

I'm sorry to say it, but a placebo effect isn't going to turn someone from XMRV positive to negative

Can you give some more information on this? Were these Cheney patients? This seems like huge news. Thanks.

 

[mojoey]

You would think so wouldn't you? I'm surprised this hasn't gotten more people's attention. I suppose Judy saying that new cells might get re-infected carries more weight, but she really doesn't know that any more than we do at this point.

2 of the patients that he cured were xmrv-pos via PCR before SC and -neg afterwards. The third did not test before, but was -neg via PCR afterwards.

 

[dhearns90]

You would think so wouldn't you? I'm surprised this hasn't gotten more people's attention. I suppose Judy saying that new cells might get re-infected carries more weight, but she really doesn't know that any more than we do at this point.

2 of the patients that he cured were xmrv-pos via PCR before SC and -neg afterwards. The third did not test before, but was -neg via PCR afterwards.

What is your source for this information? I would like to find out more if possible. I looked through Cheney's blog but couldn't find anything about a positive to negative switch. Thanks

 

[mojoey]

As I mentioned before, Cheney has a gag order on his patients so I need to respect the source's request for anonymity. Just know that Cheney wrote this himself.

 

[dhearns90]

As I mentioned before, Cheney has a gag order on his patients so I need to respect the source's request for anonymity. Just know that Cheney wrote this himself.

Gotcha. Well, that does explain why it hasn't been getting more attention anyway.

 

[liverock]

I have written a comment on Mr Kite's blog on the apparent failure of stem-kine supplementation to increase endothelial progenitor stem cells. I dont know whether its been mentioned here, but apparently studies have shown that its hard to raise endothelial progenitor stem cell levels if you have high cholesterol or high homocysteine.

http://tinyurl.com/3x6p7gb

 

[Peggy]

Placebo

On the placebo issue:

Remember the Dr. Cheney's original interest in stem cells (as expressed in his DVDs on cardiac issues and ME/CFS) had to do with research on stem cells in heart failure being done in Germany and elsewhere. At the time, Dr. Cheney was just starting to see ME/CFS as a form of diastolic heart failure.

It is hard to argue that conventional heart failure patients benefiting from stem cells are having a placebo reaction, since they are generally being followed by cardiologists using strict echo monitoring parameters. VesCell in Thailand (where a family friend went to get stem cells when he was nearly dead from heart failure, and got his life back) has a lot of stories on their website of patients who have benefited from this approach. Some of them have cardiomyopathy, i.e. from viral causes. VesCell and many of the other heart failure treatments use autologous stem cells, derived from the patient's blood or bone marrow.

I know Dr. Cheney is using his own echo mapping on stem cell patients, but I personally wish he would do pre and post testing with the Impedance Cardiograph protocol that Peckerman originally used to diagnose left ventricular dysfunction and potential heart failure in ME/CFS. I also wish he would treat some patients by threading a catheter into the heart and administering some of the stem cells directly to that area, especially in his worst cardiac patients.

 

[slayadragon]

You would think so wouldn't you? I'm surprised this hasn't gotten more people's attention. I suppose Judy saying that new cells might get re-infected carries more weight, but she really doesn't know that any more than we do at this point.

2 of the patients that he cured were xmrv-pos via PCR before SC and -neg afterwards. The third did not test before, but was -neg via PCR afterwards.

Okay, lets see if I have these immune measures right.

In the original cohort group, 67% were positive for PCR and 95% were positive for antibodies.

My understanding is that if someone is positive for antibodies but not PCR, that means that they still have the virus but that it has been driven down so that it's not active any more.

Dr. Mikovits said that a variety of things can make it go active. The ones that she mentioned are inflammation, cortisol, androgens and estrogen.

If this indeed is what is being suggested, I don't think it's all THAT impressive. I would guess that a lot of things could bring people far enough up on the "power curve" to get the virus to become latent.

And if all that's happened in Cheney's "cures" is that the virus has become inactive, then it seems to me that they have the potential to have it become active again if they're under the wrong conditions.

This is the MAIN reason that I'm on this board hammering away at the mold. I'm so frustrated at seeing people that I know are swimming in mold exposures fail at one treatment after another that I feel compelled to intervene.

The main way that toxic mold exercises its effects is through inflammation. It also causes cortisol levels to go up.

Insofar as people get XMRV to go latent as a result of these stem cell treatments, they should be able to withstand more mold exposures. I believe that firmly, because just addressing the herpes viruses (with Valcyte/Famvir) has helped my own mold reactivity go down a lot.

But there's a limit. Just because people's ability to withstand this crap goes down doesn't mean that they can go back to being in super-crappy environments again. If the inflammation and cortisol levels get too high as a result, the virus will go active again and the whole effort will have been a waste.

I'm not telling anyone that they should follow my path of "extreme avoidance." Hopefully stem cell treatments or other treatments will make that unnecessary.

But no one should be living in a bad building. And that's especially the case for people who are always going to be susceptible to negative effects from inflammation because they have the virus sitting inside them.

Does this make sense to folks? Am I understanding clearly what's being postulated about the viruses?

And if so, how do you suppose I should go about encouraging Dr. Cheney to suggest to his patients that they might want to check to make sure that their house isn't a really Sick Building before they fly off to Panama?

Best, Lisa

 

[Chris]

Stem Cells and houses...

Hi; just two observations to make. The first is that mold is not the only possible factor that makes for a bad living environment; I have been exploring electromagnetic issues for a while, triggered in part by living in an apt building topped by numerous cell phone and other relay antennae, and recently installed some Stetzer filters, measuring the change with a Stetzer meter; the electro pollution has been significantly reduced, and I feel a bit better.

The second thing is that there is a website, www.closerlookatstemcells.org , run by the International Society for Stem Cell Research (ISSCR), that has some good basic information, and lists danger signals to watch for in venturing into experimental stem cell therapy. I don't know who or what is really behind it, but maybe it is worth taking a look.
Good luck to all who go down to Panama, and like the rest of you I very much look forward to hearing the results! Best, Chris

 

[Rrrr]

is there anyone else on this forum besides dipic and joey going to panama?

 

[dipic]

is there anyone else on this forum besides dipic and joey going to panama?

Just so there isn't any confusion, I am technically not going with any "group". I will be leaving on 26th (just 13 more days) with just my father.

Can't speak for anyone else though.