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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Stem Cells

Rrrr

Senior Member
Messages
1,591
If xmrv is the cause of cfs, would an autologus stem cell treatment be useless because the stem cells have xmrv? Would a product like stem kine be usless for the same reason?

yes, it is indeed a concern that autologus stem cell treatment would be just re-infecting the body with xmrv infected cells. that is why cord cells are being used now.

i really know nothing about stem kine...
 

Chris

Senior Member
Messages
845
Location
Victoria, BC
I think not enough is known about where XMRV hangs out--I think one of the problems with finding it is that it does not seem to hang out in the peripheral blood much--I don't know whether mesenchymal stem cells count in that category or not. I do know that I did seem to improve in some ways on Stem-Kine, and that I am now going through a rough patch--just don't know whether it is because the mushroom extracts used in it (and supported by my taking some AOR Immune Support, which seems to be a cousin of AHCC) is revving up my immune system to attck bugs that have been having an easy life the last few years, and so I am suffering from inflammation (that is what it feels like) or something else--just doing too much because I was feeling better. We could all use more information than we have! Best, Chris
 

aquariusgirl

Senior Member
Messages
1,732
mr kite
i've had rare occasions.. where I actually did not have the energy to speak. Wierd as that sounds.
More often, I've had the rubber arms and legs syndrome.
I always come around..so hopeful you will too... but I sure would like to know what's going on at a cellular level.
Hang in there.
 

dannybex

Senior Member
Messages
3,564
Location
Seattle
Hyperbaric oxygen to the rescue!! (Regarding Mr. Kite & rrr's posts)

With regards to oxygen in general, and Ben's concerns about Cheney's theory that oxygen is 'toxic' to PWC's, isn't Andrea Whittemore on oxygen 24/7...or at least daily?

"Toxic" is a bizarre word to use as far as I'm concerned. Perhaps some of his patients react to 'too much' oxygen, but that doesn't mean it applies to everyone. I hope Ben, Rrrr, Mr. Kite, and all of us can find the answers we need in our individual cases. We're all different........

d.
 

Rockt

Senior Member
Messages
292
I did the hyperbaric chamber thing for months. Spent lots of money, but unfortunately did not notice any improvement at all. Everyone is different, though.
 

jenbooks

Guest
Messages
1,270
I "dove" in Jamie's chamber daily for 2 months in summer of 2003, I think it was.

Although the clinic chambers helped, I love my portable chamber and it's gentler. Plus I need it longterm anyway.

Not everybody has a fantastic response, it's true. It is a major helping therapy for me. I just gave a friend who occasionally posts here two sessions, at only 3.0 for 30 minutes at a time (I do 4.5 for an hour). She felt a lot better.
 

leaves

Senior Member
Messages
1,193
hmm Ive always wanted to try. Felt a lot better after a surgery, and then I was on oxygen. lol. But it is too expensive unfortunately. Maybe we should buy one together, lol. Anyone close to MA interested in that?
 

jenbooks

Guest
Messages
1,270
If you can stand the little ones (the solaris) in which I myself am claustrophobic, you can find them used on Craigslist for about $5000, concentrator, chamber, pump, the whole kit and kaboodle. Just google "oxyhealth craigslist" or something like that. Or perhaps "hyperbaric chamber craigslist."
 

mojoey

Senior Member
Messages
1,213
With all this talk about hyperbaric in a stem cell thread, I find it slightly ironic that stem cells thrive in an oxygen-low atmosphere, or the more hypoxic the better. http://www.medicalnewstoday.com/articles/54580.php
http://www.newsrx.com/newsletters/Blood-Weekly/2003-09-04/090420033335BW.html

This makes sense because hypoxic regions of the body usually indicate tissue damage, and hence attract stem cell migration. So really shouldn't we be getting stem cells at a clinic up at Mt. Whitney versus near sea level in Panama :)
 

Rrrr

Senior Member
Messages
1,591
hi all

i feel like i asked this recently, so i'll check the thread again, but there are soooo many posts. so if i can be a bother and ask again:

does anyone know what cheney's pre-stem cell protocol is and where to buy it? i will try to order it today -- or if anyone is up for sending me a few of the pills, i'd welcome that! (why? because i buy so many things, try it, and then i find i can't tolerate it, and then i have a whole bottle of it!)

whatever cheney's protocol is for pre and post stem cells, i'm looking for it: supp name, name of brand, and where to buy it.

last fall, i heard it was this:

- Wormwood (half a TBSP) on MWF
- Artesunate (one cap of Hepasunate from hepalin.com) on Tu and Thur

just wondering if this above info is still accurate. and wondering both where to get the wormwood (brand name?) and IF one has to get the Hepasunate fr hepaline.com, as it is so pricey ($50 per bottle!)

xxoo
rrrr
 

jenbooks

Guest
Messages
1,270
Actually, Joey, hyperbaric oxygen treatments release/stimulate stem cell production. There was a good study a year or two ago about that.


With all this talk about hyperbaric in a stem cell thread, I find it slightly ironic that stem cells thrive in an oxygen-low atmosphere, or the more hypoxic the better. http://www.medicalnewstoday.com/articles/54580.php
http://www.newsrx.com/newsletters/Blood-Weekly/2003-09-04/090420033335BW.html

This makes sense because hypoxic regions of the body usually indicate tissue damage, and hence attract stem cell migration. So really shouldn't we be getting stem cells at a clinic up at Mt. Whitney versus near sea level in Panama :)
 

mojoey

Senior Member
Messages
1,213
I have a question: why aren't we taking g-csf as stem cell mobilizers? I read that there were some side effects in Christian Drapeau's book (don't have a copy of it anymore), but when I googled it they didn't seem severe compared to the benefits.

From wikipedia:
"It is a glycoprotein, growth factor or cytokine produced by a number of different tissues to stimulate the bone marrow to produce granulocytes and stem cells. G-CSF then stimulates the bone marrow to release them into the blood. It also stimulates the survival, proliferation, differentiation, and function of neutrophil precursors and mature neutrophils."

From http://www.christiandrapeau.com/stemcell_101.php
"Let’s briefly describe the process that takes place any time a tissue is exposed to stress and needs assistance. A few hours after an instance of tissue stress or damage, the affected tissue releases a compound called Granulocyte Colony-Stimulating Factor (G-CSF). G-CSF is well known to trigger stem cell release from the bone marrow.2 G-CSF is routinely used prior to cancer treatments involving chemotherapy or radiation. Since such treatments are known to kill all stem cells in the body (requiring stem cell transplantation after the treatment), G-CSF is commonly injected into the cancer patient to trigger stem cell release from the bone marrow in order to harvest and cryo-preserve stem cells. After the treatment, the stem cells are thawed and re-injected in the patient to reconstitute the bone marrow.

After tissue damage, as its concentration slowly and naturally increases in the blood, G-CSF triggers the release of stem cells from the bone marrow, increasing the number of stem cells circulating in the blood."
 

mojoey

Senior Member
Messages
1,213
I emailed Christian my question and he replies with the following:

joey,
*
It’s not a simple answer, as it is linked to very process of scientific investigation and how research is done.* At this point, G-CSF has been used essentially to trigger stem cell release in order to collect stem cells from the blood.* But with this protocol, with relatively high doses, G-CSF can only be used for a few days.* When used in that way, the results are not that impressive.* I believe that it is simply because many of the released stem cells simply home back to the bone marrow.* Despite of the massive release, the number of stem cells actually reaching the tissues is limited. *We need to use lesser doses for longer periods of time; but this is not the protocol that has been historically used.* So there needs to be a shift in the thinking process around the use of G-CSF, and it is happening, there is a lot of new articles describing the use of G-CSF in that manner, with promising results.
*
The second reason is that even at low dose, G-CSF presents significant side effects.* Essentially, it activates platelet aggregation, which increases the probability of blood clot formation.
*
I hope this answers your question.
*
Christian
 

Rockt

Senior Member
Messages
292
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

I thought there might be more comment on this data.

I'm not very familiar with the Karnofsky scale, other than what I read after Google-ing it. Is a 5 point rise in K significant, (ie. from 60 to 65)? Is 10 points REALLY good? Doesn't exactly seem miraculous from a numerical perspective, but I don't know the practical side. Maybe 10 points is like night and day in terms of feeling better and in terms of functionality.

Dr. Cheney hasn't posted any new news on his regular website since April 26. Sure would be nice to hear how these patients are fairing. Are they getting even better? Slowly reverting back to poor health? Anyone with "inside" info. please let us know.

Does anyone know how Ben is doing? I'm actually glad he's not been posting because that would be tiring and he needs to rest, but we're all interested in his progress and hopeful for him, so if anyone is in contact and he doesn't mind, please give us an update.
 

Chris

Senior Member
Messages
845
Location
Victoria, BC
Hi; unfortunately, the slide does not give the ages of specific trajectories; the move of one person from 50 to 90 is spectacular, but I am going to assume until told otherwise that that was a youngish person, and that at 77 I could not expect that kind of response. So the effect of this small release of information on me is to confirm me in my decision that for the time being I am going to stick with my mix of Stem-Kine and AHCC, on which I am doing pretty well--slow but relatively steady progress.

I did get a response from Aidan to my question about the danger of overdriving the release of stem cells from the bone marrow, and the advisability of pulsing the dose; it was I am afraid a not very full response--in effect, saying that if we are nervous about that, pulsing the dose--I had suggested two weeks on, one week off, or something like that--should be fine, and that some users were doing that and doing fine.

Christian Drapeau's book "Cracking the Stem Cell Code" gives a well-written and clear account of stem cell research (good bibliographies), and in effect he recommends long term use of a moderate stem cell mobilizer--like his own StemEnhance; since he is not an MD or PhD, I guess he has problems in entereing the field of clinical stem cell practise. So his advice may be a bit suspect, but it makes sense to me, and so I have chosen Stem-Kine and AHCC for the time being, I respect his argument--make steady slow progress and avoid potential problems.
Best, Chris
 

mojoey

Senior Member
Messages
1,213
Hey Chris,

Glad you enjoyed Christian's book. Out of all the stem cell books I've read, his seem the most balanced yet informative. Steenblock is actually very conservative with his claims so some may argue he's balanced but he doesn't seem to disclose an enormous amount of data given he has an entire research institute dedicated to following up on his stem cell patients. Rader's is thinly veiled self-promotion and unbridled trumpet for fetal stem cells.

In any case, I think this email from Christian is very important for those of us taking stem cell mobilizers or thinking about it, especially prior to stem cells:

"My honest opinion, without this being in any way a medical advice, is that lower amount of stem cells over longer periods of time is better than one mega injection. The ability of stem cell to migrate into tissues is limited by their actual anatomical location where stem cells migrate, in the post-capillary venules. If the number of stem cells creates a phenomenon of saturation, it is likely to lead to many many stem cells simply homing back to the bone marrow. Little work has been done in this area, so much of this is speculation, but it is supported by many scientific reports. That is why my focus has been on the development of methods to support milder daily stem cell release.

I would believe that something like StemEnhance would be interesting to take after your stem cell injection, not before. This way you support the continuous release over time of the stem cells that have been injected. But again, this is based on speculations as little has been done in this kind of approach.

I hope it helps.

Christian

With that said, I decided to stop taking stemgevity, Steenblock's mobilizing formula, for the time being. My fear isn't so much dovetailed off Christian's admonitions but rather my fear about giving XMRV (or other retroviruses) new cells to infect. I'm currently on an aggressive anti-retroviral strategy using my photon machine and retroviral nosodes. I posted about this treatment approach in the "natural antiretroviral" section. My treatment with XMRV and HTLV-II gave me the worst reaction I've ever gotten from well over 100+ photon treatments for a wide range of infections from EBV, coxsackie, HHV-6, lyme etc.

I've also found a commercially-used psoralen called UVADEX that I may combine with UVB treatment. Recall that WPI and cereus inactivated XMRV in the blood using this very combination, although I believe their process uses UVA light. The downside risk is the damage of white blood cells, but if you think about Rituximab, it wiped out B-cells completely and patients improved, so especially with stem cells coming up I'm not worried about this. The upside risk isn't as enormous as some may think as XMRV is likely in the tissues beyond the blood cells, but my hope is that the photosensitizing agent will allow UVB penetration into the tissues. Perhaps a combination of UVB blood irradiation+psoralen and UVB shined on the skin+psoralen may be warranted.

My hope is to lower the viral load as much as possible in the next month, even at the risk of damaging the cells, and then post-infusion, continuing with only photon + nosode therapy to elicit macrophage and healthy immune cell-targeting of retroviruses.
 

Chris

Senior Member
Messages
845
Location
Victoria, BC
Hi, Joey--sounds interesting, but beyond me at the moment. One surprising fact I learned from Drapeau's book is that statins and to a lesser extent ARB and I think ACE inhibitors also promote stem cell release and migration, and I find that fascinating and puzzling; the dose of Lipitor used in one study he refers to was quite high (40 mg), and so I am left wondering--was the stem cell release in response to damage signals from muscle mitochonria, which are known to be damaged by statins, or via some other route? I think I will try a very low dose of Lipitor (now a generic) since I do have documented CAD, though for the last couple of years while I have realized I have CFS I have dropped it and kept a very low fat vegetarian diet. At a dose of something like 10 mg every two days there should not be much damage (I do and will take CoQ10), and maybe it will promote stem cell activity via other routes than those used by Stem-Kine and AHCC. I guess that faced with this complex disease, the best we can hope for is to minimize damage and maximize regeneration of function.
Best, Chris
 

richvank

Senior Member
Messages
2,732
Steenblock newsletter with Rowen's "Second Opinion" article on stem cell treatment

Hi, all.

Today in the snail mail I received a newsletter from Dr. David Steenblock in Mission Viejo, CA, together with an issue of Dr. Robert Rowen's "Second Opinion" newsletter that is devoted to Dr. Steenblock's stem cell treatment.

Since I think that people here may be interested, I will summarize the main points in these newsletters. Additional information is available by phoning Dr. Steenblock's office at 1-800-300-1063 or visiting his website at www.StemCell.MD Dr. Rowen also notes that testimonials from actual patients can be found by going to www.youtube.com and typing Steenblock into the search field.

I have no direct connection to either Dr. Steenblock or Dr. Rowen, though I have met and talked with both of them in the past. I'm posting this for the information of people here.

Since November, 2006, Dr. Steenblock has done over 1,000 bone marrow stem cell transplants in his office in Mission Viejo, CA. He writes that the results have ranged from "minimal to spectacular," and that "We now know many of the reasons why the results vary and are improving our techniques daily."

He writes that for patients under age 40, bone marrow stem cells are generally quite beneficial. For older people, there can also be good results for those who are physically active, follow a good diet and health program, and don't have any chronic diseases like diabetes.

For older persons who are not physically active and have one or more chronic diseases, he writes that fat stem cells are preferable to bone marrow stem cells, and he has just begun to use this therapy.

In Dr. Rowen's newsletter, which discusses only the bone marrow treatments, cases of ALS, Parkinson's, and one woman who had fibromyalgia, diabetes, degenerating joints, multiple allergies, multiple sclerosis, and asthma are described, and all of them experienced considerable improvement.

Dr. Rowen reports that he underwent this treatment himself, and he also administered it to his 91-year-old father last May. This restored his father's vision, from near blindness due to advanced macular degeneration,, and he is now planning to return home after being in a nursing home for one and a half years.

Dr. Rowen reports that Dr. Steenblock's charge for a "bare-bones stem cell treatment" is $4,000.

He also writes, "It is perfectly legal, and the feds won't bust down your doctor's doors for performing it. It uses normal medical techniques than any trained doctor can do in his own clinic. There's no need to have a hospital or operating room."

Dr. Rowen also notes that there are some risks with the bone marrow stem cell treatment:

"These include penetration through your hip into the abdominal cavity or even your hip joint, the inability to get the needle out of the bone, and the inability to get the bone marrow blood back into you. In the latter case, shock could develop from blood loss. Additionally, if you are obese, the excess fat could make it difficult to do the procedure. Finally, there are the complications of bleeding, infection, nausea and vomiting (from drugs, if needed). So please get your bone marrow stem cells from an experienced physician."

"It's also imperative that your doctor test to be sure you are not suffering from heavy metal poisoning, chronic infections, or hormone imbalances. Many of these are subtle and require a very good evaluation by a competent integrative doctor." These look like they could be issues for people with ME/CFS.

These are the main points. If you want more information, please call Dr. Steenblock's office at the number noted above, or consult his website, or the youtube testimonials.

Best regards,

Rich