Stem Cells

[jeffrez]

So, it's an unsubstantiated rumour then.

Like I said, I don't know if it's substantiated or not. You'd have to ask the people who originally told us there was a gag order. As I said in my original post:

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.

 

[mojoey]

Hey Chris,

If you trust Cheney's judgment in these matters much more than your own, why are you taking stem-kine? As far as I know, this has never been part of his stem cell prep protocol. Considering his close relationship with Neil, I'm guessing it's not due to lack of awareness about the product.

FWIW, I tested stemgevity with my doc today, and it tested very good. So good he plans on ordering a bunch for his office, esp for his patients that are considering stem cells (and there are many).

best,
joey

 

[aquariusgirl]

heart stuff....

Mr Kite
Sorry to hear of your heart issues. I really should order Cheney's heart of the matter video...have you seen it? Do you think it's realted to cardiomyopathy?
anyway.. can i ask what brand and dosage of hawthorne berry you use?
sorry for the off topic...subject.

 

[mojoey]

Just wanted to mention that I started taking digoxin (digitalis) which is synergistic with hawthorne berry. I actually tested for "congenital heart failure" on the biomeridian, which may correspond with Cheney's cardiomyopathy. In addition I'm taking 20 MEQ of Potassium Chloride 2x/day.

The biomeridian lady mentioned something about the potassium-pump and the heart not being able to come back online until the adrenals are because potassium won't get into the cells. I still need to read about this some more.

 

[Chris]

Hearts and stem cells stuff..

Hi; a bit more from an ongoing project:
Aquariusgirl--you should read Cheney's "The Heart of the Matter", easily findable by Googling; a basic text for me and others, though some things have changed since 2005; and get or find his 2009 DVD, "CFS: Is Oxygen the Problem"--a very full treatment of the kind of diastolic dysfunction / heart failure that he finds characteristic of CFS. He does consider it a form of cardiomyopathy, though one not usually recognized by doctors, and in my experience he is right. You need a good echocardiogram exam to reveal it--as in my own case, there is usually a good Ejection Fraction, but...

Mr. Kite; sorry to hear about the cardiac issues. Yes, it would be nice to have easier monitoring of what is going on. But maybe you can find a bit from monitoring your blood pressure and heart rate and energy level together; if your BP is high, your heart is going to have to work harder, and may object. Check your Pulse Pressure--the difference between the diastolic (lower) reading, and the higher (systolic) reading; a high reading can mean either (a) your heart is pumping very powerfully (high ejection fraction) and/or your sympathetic nervous system is closing down your arteries. I know my systolic pressure can vary 30 or even 40 points in either direction very fast--within 20 mins! If your BP is within normal range, say ca. 75/120, your heart rate is reasonable (say 58-70) and your energy is decent, then things are probably not bad. But try to get an echo to see if there are problems with diastolic function, or valves--I discovered at age 71 (like you after a life time of high energy and happy exercise) that I had a severely stenotic aortic valve--definitely not good! And so to surgery...

Cheney does report that Artesunate has been reversing diastolic dysfunction in some of his patients, which is exciting--I am still taking a bit every three weeks, and looking forward to my next echo to see if there has been improvement--I suspect there has.

I am still investigating the relationship between stem cell mobilizers and immune modulation--mushrooms feature in both, and I am beginning to suspect that part of what immune modulators do involves stem cell mobilization--I have found a graph for the effects of a mushroom immune modulator that has the same hump backed curve as the SK curves. And the progenitor haematopoietic and endothelial stem cells seem to stimulate the production of T cells too.... I need to do more work on this before my dim understanding begins to get hold of this. I have not yet heard back from Aidan re SK, but in the meantime have decided to treat my AOR Immune Support ( containing mushroom extracts) and SK as basically a single therapeutic unit, and to pulse them--say 10 days on, 7 days off, or something like that.

mOjoey, I don't want to get into a fight about this--I have said that I have Steenblock's book on order, and if Stemgevity works for you, great. But since Molly told us that the Riordan clinics recommend SK before and after infusions (no great surprise here), I am assuming that many of Cheney's patients do in fact take it, though I do not know that for a fact.
You will have to explain to me exactly what "testing" for the efficacy of Stemgevity in your doc's office means, and until then I will continue to put more trust in a published paper.
Best to all, Chris

 

[mojoey]

Mr.Kite--

digitalis is in the form of Rx digoxin

 

[Sushi]

Hi Everyone,

I don't know if anyone has posted this, but I now know the tests Dr. Cheney gives his patients before and after stem cell infusions. If anyone wants this info, please PM me.

Sushi

 

[foggyfroggy]

m0joey

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.

Hi Joey, I'm looking forward to hearing your reports as it seems that we may be pretty similar in our 'bugs'. I have elevated EBV and have always felt that there is some relationship there and also have very high lead, which I'm working on. Hopefully I can get some of these things whittled away at before I go.
Can you tell me a bit more about your energetic testing? Is there a name for the specific type you use or is the practitioner the 'key' for you. I'm sorry if you have covered all this already somewhere - I tried to read back through your posts but have trouble reading very much at a time.
Do I remember that you used Rifeing for the Lyme? Did you feel that ABX improved your Lyme or did other modalities help more?
Have you used anything to try to fight the XMRV?

Again, sorry if this has all been covered.

It's so hard to straighten out all the things that need to be addressed before going to have such an expensive precedure! Or do you do the Stem Cells first and hope they kick the butts of all the other interwoven crud!! Arg!

Gretchen

 

[foggyfroggy]

dannybex

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

THATS the kind of stuff I like to hear! :victory::victory::victory:

Thanks for the encouragement! It's my master plan to get back to a life like that.
The age thing is a bit of a bummer though - 50 and feel like 100. Heck, I've known a couple of over 100's who'r more active than me.

Gretchen

 

[Chris]

Mr. Kite, very sorry indeed to hear all this--hope you make it through OK. I assume you don't need well meant advice about acetyl-l-carnitine, Q10, and that sort of thing; but if you are in danger of heart failure, I would take that as a positive indicator for stem cell infusions--see for instance Ichim T, "Combination stem cell therapy for heart failure", full text available free--and Riordan's clinic is involved. There is also a Bangkok stem cell clinic that specializes in heart failure, with apparent success. I won't bore you with more, but PM me if you do want more info. And I do hope you begin to climb upwards again after all these blows. Best wishes, Chris

 

[kg1]

Regenexx.com , stem cell therapy for joints in Colorado, posts on their candidate form page on their website that their stem cell therapy is less effective if you have taken hormones in the past four months. It also posts other recomendations that would be less relevent to cfs

Isscr.org has a weblink dedicated to advising people to do their due diligence for overseas stem cells, they are also trying to monitor people that go. It would be wise for everyone who goes for stem cell therpy to register because this organizations leaders have patents and rights and power to guide stem cell therapy research in the US, therefore if they see success they will gravitate to it

request a clinic be reviewed
http://www.closerlookatstemcells.org//AM/Template.cfm?Section=Home

register if you go
http://cellmedicinesociety.org/component/content/category/49?layout=blog

 

[foggyfroggy]

Mr. Kite

Thanks everyone for the information. @aquariusgirl I was taking a hawthorn extract from a local herbalist, at about 10-20 drops twice a day. I ran out and wanted some quickly so I got some capsules from Now that don't seem too potent. Not like the extract at least. @m0joey where do you get the digitalis? From what I could tell a few years ago that is not usually so easy to come by.

My cat passed away this morning.

So I thought I was prepared for this, but it's hitting me a little harder than I thought it would. He's basically been my only companion 24/7 for the past 10 years, so yeah - kind of sad. I'm not sure what I'm going to do without him, I got so used to him being around, and he was a great cat anyway. It's going to be about 1000x lonelier around here - who'd have thought that was even possible.


But anyway, I see how much the stress of the past month or two has been affecting me - sorry if I've been short or cursory or anything like that with anyone. I'm kind of a jerk these days anyway because of MCS/CFS and how much cognitive/emotional/personality damage it's done, but it's probably been even worse lately from being stressed out from this, and from the heart and fatigue getting even worse from all of it. I think I'll try to take a break for a while, I really need to try to get my heart and adrenals rested and hopefully back online a little more. I'd like to say I'm still 100 percent on board with Panama, but honestly right now I feel more like 50/50. Or maybe 60/40 - I don't know - I'm just not thinking clearly about it right now, so I think I just need to take a break and reassess what I want to do. I'd like to see what happens with XMRV a little more, and still to hear from Ben, when he returns. But I just need to step back a little and get my bearings. See you all soon.

Mr. Kite - I was taking Hawthorne without much effect and my doc put me on Atenolol. A very low dose; just one pill per day and that on an "as needed" basis. It's a beta blocker and really helps me both with heart rythym and better energy which I translate to perhaps better strength. May not work for everybody, but helped me.

I'm so sorry about your cat, cats can really get into your soul.

Just remember, we are all in this with you, understand much of what you are going through, and you can vent on us anytime! Just speaking personally, I believe that the fear, the stress, and the loneliness are worse than the pain and the disability. And this coming from someone who was completely bedridden for a couple of years. Activity scale zero. Needed people to wash me, and help me to the pot and back to bed.

Hang in there!
Gretchen

 

[kg1]

Has Cheney posted any update on panama for his June follow ups yet on his website?

 

[Rockt]

I just checked. There's nothing new there. he hasn't posted about stem cells, (or anyting else), since April. I think he's due to report on his stem cell results.

Anyone heard form Ben, (Dipic). Wondering how he's doing. Well, I hope.

 

[dipic]

Hey all... I'm alive and "well". No real changes as of yet, not that I would expect there to be at this point. (Edited in; fair warning: Not a whole lot of "substance" to this post as far as info relating or pertaining to stem cells/my experience with them. As I said, not much to say about that at the moment; people interested in that can skip over this if they like. Maybe I should start a blog as to not clutter this section with my ramblings? What do you guys think? I think there are merits to it, but I'm not entirely sure if it would worthwhile.)

I've started (as of 3 days ago) taking Stem-Kine and AOR Immune-Support. I plan on following a similar regimen to that of Chris' where I "pulse" them both (on a couple weeks, off a week or so, etc.)*

I've also been debating whether or not to start taking one of AOR's multi's (either Ortho-core or Multi Basics-3.) They are fantastic multi's - the best on the market, as far as I'm concerned (as are many of their other "science-based" supplements.) That said, I will probably hold off at the moment, for a variety of reasons.

Other than that, hrm... I haven't been able to rest as well I'd like. I've had a couple visitors that I could not turn down seeing (best friend from high school & college who is moving away to Texas; family that I have not seen in years. I've also been talking regularly to an old (girl)friend from my childhood that just unexpectedly and abruptly reentered my life.) It's draining but these connections and relationships keep me well, mentally, which is important. The key, I think, is moderation and trying to strike a balance between these things and, of course, resting.

Unfortunately, it's same ole', same ole' as far as all that (rest, sleep, etc.) goes, which doesn't help much. It's just part of the stage or phase (or what have you) that I am in. This perpetual and self perpetuating crash as I like to refer to it as. I asked my former doctor (which as some may know is David S. Bell): Of the people who have fallen into this state, do you personally know of anyone who has recovered or improved at all from it?

If you have ever met Dr.Bell, read any of his books, or have maybe heard him speak, etc., you will probably notice that he is generally quite an optimistic person who you can tell tries to instill hope and that same positivity in his (now former) patients and the rest of us PWC's. I also believe, however, that at least in my case, he knows that I hold much value in a truth that is frank and not at all sugar-coated.

So the answer to my question, which I had expected from previous conversations with him and other PWC's in a similar state as myself is pretty much, well: No. Once you reach this point, you will not recover or improve, even moderately. Or at least, may I remind you, in the case of the people I spoke to, that has been their experience (though that includes Dr.Bell who has seen and treated many patients over a long period of time.)

That does not, however, take into account stem cells or perhaps later down the road, antiretrovirals or other potential, currently undiscovered or unadapted treatments. So there is still a fair amount of room to be hopeful and cautiously optimistic.

At any rate, I have been working on trying to get the photos from my trip uploaded, particularly the ones of the lab, because while not overly exciting I'm sure that's what most here would be the most interested to see out of the bunch. Other than that, if anyone has any questions, let me know - preferably through this thread, and not by PM unless you feel it's personal. Getting a bunch of PM's is a bit overwhelming, is all. I'd like to keep it in one place (which is probably why I should start a blog if that would be more beneficial to everyone.)

Any questions I might receive, I will collect and hopefully with due time, answer the ones that I am able to. Otherwise... um, I'm not really sure what to say in the meantime. I think many people may just want to see if I get any better, and updates on that will obviously have to come if/when the benefits come. Again, if anyone has any ideas, questions, suggestions on whatever, I check this thread at least once a week (though, with my own interest of just surviving, let alone getting better at the top of my list of priorities, updates for now will be non-frequent and hopefully less dense than this one.)

'Till then - take care all,
Ben


*By the way, I wanted to thank you, Chris - your comments on your experience and thoughts on the S-K and other certain things have been very helpful and appreciated (that goes to the others discussing it and adding their insight as well.) Coming from a layman myself on all of this stuff (we all are, to some degree, aren't we?), your comments and even theories and speculation are certainly more educated then mine, which is why I have decided to follow a similar routine with the aforementioned supplements.

I also really like and agree with what you said about the necessity of following those who you who you trust, to an extent. With so many unknowns, I believe that if we are going to experiment and try different things, we must educate ourselves as much as possible, then from there follow a combination of our own instincts and intuitions as well as have faith in those that we know or at least perceive to be more knowledgeable than ourselves.

P.S. Mr.Kite: I'm terribly sorry to hear what you've been going through the last couple weeks. I can empathize with what is essentially the loss of a family member, not to mention the physical repercussions you described from the whole ordeal. Hope you are able bounce back from this soon.

P.P.S. Does anyway else who subscribes to Cheney's newsletter feel it's largely a waste of money? :worried: Seriously...

 

[JanisB]

Planning to go

Hi All,
I finally got up on this thread (reading through 2 months of posts I am bleary-eyed), but I wanted to respond to M0joey's request for people to post their intentions.

I hope to join the winter crowd -- Nov/Dec/Jan

First I want to give myself time first to get my methylation working as MCV MCH are high or high normal.

Second, I am continuing to make progress every day, either from the Trivedi blessings unfolding, or because the neural therapy has had a lasting effect even though I relapsed while doing it (okay, that is convoluted reasoning....what I mean is that I am recovering from this relapse faster than I have ever recovered from a relapse, and I can't know for sure it is the blessings even though I stopped NT 'cause it could be that NT permanently changed some things in my system) Spending upwards of 10K is something I'll put off until I plateau -- which I hope :Retro smile: not to do, but which is, alas, likely .

Third I am waiting for the results of some testing to get more info about my condition (e.g. Holter and echo from Lerner, bio/neurotoxin Shoemaker panel from Vinitsky) in the hope of clearing up as much as I can in advance of getting the SC injections.

Lastly, the idea of going to Panama when snow and ice cover the roads here is more appealing than in this G-d awful summer heat!

Other than Rrrrr, anyone else hoping to join a winter Panama group? PM me if you are.

 

[Michael Dessin]

Ben, you can recover significantly from the point your at.....It does not happen all that often but does, contrary to Dr Bells comments.

 

[Chris]

Welcome again, Ben!

Ben, good to hear from you again even if the news is just plateau for the moment. Glad something I said seemed helpful--but remember that I was also relying on stuff learned from Mr. Kite--we are all in this together, and the mutual help we can give each other in this forum is great--I really appreciate it!

I want to add a specific word to Mike's encouragement re improvement. I just got the DVDs of the Invest in ME conference, and can report that Jason, Judy, and Nancy were all terrific--and so was Kerr, come to think of it--exciting things are happening, though it will all take time. The first disk is defective in NTSC copies, but will be replaced--so I have not been able to follow the Judy / Huber clash--have that to look forward to still.

Cheney only covered his heart stuff, though included a nice bit on finger prints, but the PDF files included give all the slides used and prepared, and so there is info on Cheney's stem cell patients. Here is the gist; 20 sent, 13 followed for 9-16 months; age 21-67; 7 male, 6 female; average length of illness 15 years; average KPS (Karnofsky) rating at start of SC, 60. All improved; all showed lower TGF Beta 1, and improved Redox Index (don't ask me...).

The interesting thing is that if I have read his chart correctly, it seems the sicker you are at start the larger % improvement:
2 moved from 40 (Karnofsky) to 50 and 60;
3 from 50 to 60, 75, 90 (!)
1 from 60 to 65
3 from 65 to 70, 70, 75
2 from 70 to 75
2 from 75 to 80

So, Ben, don't give up hope of improvement! But of course, who knows.....
And I gave up my subscription to Cheney's paid website some months ago--felt it was just not an effective use of my limited funds. I still have a very high regard for him, but...
Best wishes, Chris

PS I did email Aidan about taking Stem-Kine continuously or pulsed, and am sorry to report no response yet. And I may switch from AOR Immune Support to their AHCC, though it is more expensive--there is a good deal of impressive research on the latter, though the two do appear to be very similar--will see when I have finished the bottle of IS. And someone has reported that Nancy is impressed by AHCC--which has some weight.

 

[Michael Dessin]

Chris, very interesting comments...the patients I have seen get well, which are not many have been the sickest. I have no idea why though.

 

[Chris]

Well, Mike, if you don't know, I guess noone ever will! But very glad it does happen! Chris