Stem Cells

[Rrrr]

a belated thanks for this, chris!

Rrrr, AHCC is Active Hexose Correlated Compound, a modified extract of several mushrooms, discovered in Japan almost 20 years ago, and much used there. You will find quite a bit of research on PubMed, and can check the www.aor.ca website too for info. I suspect some overlap with the mushroom component of Stem-Kine. Nancy Klimas recently endorsed it as a useful immune modulator--I can't now remember if in her talk on the Invest in ME DVD, or somewhere else in print--sorry, you know how memory is with us folks. Best, Chris

 

[undercover707]

The date of the e-mail is:
7/11/08.

I will respond to your other questions as soon as I know the answer.

 

[mojoey]

My source tells me that Cheney will be attempting to do some kind of quantitative testing of XMRV viral load comparing pre-stem cell and post-stem cell. This is one of the reasons I suspected he would not be publishing stem cell results this summer. This should be interesting.

As for the research being done by GMA, I've seen the list of tests required. I think they are doing us an amazing favor by going out of their way to conduct research, but I have to voice my strong opinion that the selection of tests isn't sufficiently geared toward CFS. I know they see a lot of CFS patients at that clinic and are in communication with Dr. Cheney so I think it'd be a great idea for them to collaborate with Cheney and ask what an appropriate panel for CFS patients would consist of.

My personal opinion is that it should at least recommend for XMRV testing and NK cell panel.

 

[Rrrr]

did you tell the research director just that??

 

[mojoey]

i'm not sure it's in my place to tell the research director what to look for, but perhaps David and/or Ann can relay that message over?

 

[Daffodil]

on yahoo group, someone posted her positive experience with stem cells:

"That's a big assumption. I appreciate you answering though. I couldn't imagine how safe stem cell sources could increase XMRV. Still can't.

I've had 4 placenta stem cell treatments during the last 1 1/2 years. My doctor has been giving patients PSCs for 20 years and has never had 1 patient ended up in a Dr.'s office or emergency room for any reason after treatment, not once. There has not been 1 instance when his PSC treatment has done harm.

When I went for my first treatment, I had had CFS for 26 years and had chronic infections the whole time. I had been blowing yellow mucous from my nose daily for decades. PSCs modulate the immune system and increase killer cells. I now no longer have any sinus or respiratory infections, no longer need antibiotics, and no longer suffer from allergies. I am still amazed at how it feels to breath normally and be rid of these and many other symptoms.

I hate to say it but there has been misinformation spread in this country because the medical establishment here wants to delay stem cell treatment. They have focused on embryonic stem cells to that end. The safe stem cell sources correctly administered, would make a multitude of current treatments and drugs unnecessary. Much of what was spread about embryonic stem cells still has people confused. There are many safe non-controversial sources. It is embryonic stem cells that can turn into cancer cells. Not the other sources.

I am pleased that because so many people are seeking safe stem cell treatment outside the US, stem cell treatments are now becoming more available here."


------------

 

[Daffodil]

i am kind of confused. do they inject your own stem cells back into your body after purifying them or are they stem cells from another source? if they are from another source, why doesnt the body reject them? if they are from your own body, wouldn't they be infected with XMRV?

 

[mojoey]

Yeah I think that's why GMA has been having less success with adult stem cells than the patients getting umbilical: there is a greater chance of foreign alleles with the umbilical cord so a greater chance of both immunity to certain infections (retroviral) and more potency.

The body does not reject foreign umbilical cord stem cells because they lack the features that can be recognized and attacked by the immune system.

 

[mojoey]

(reposting here from the yahoo group):

I think it's a much riskier assumption to make that stem cell DO NOT replicate XMRV. I'm sorry but unless you tested positive for retrovirus(es) before, you do not have the basis to use your own experience as a proxy for everyone else that has tested positive or is waiting on results. If you would tell us about other clinical markers that changed from pre-stem cell to post-stem cell, that would at least be some sort of basis. Did your NK cells, rnase-l dysfunction, cytokines, etc change?

You criticize the medical establishment for spreading misinformation but please keep in mind you can only counter science with better science, not anecdotal extrapolations based on flawed logic.

 

[Daffodil]

m0joey....i thought the WPI found that rnase L wasnt found to correlate with anything ... and the montoya valcyte study found the same thing?

i still get it tested though and i know peterson and demeirleir order the tests...

 

[undercover707]

My source tells me that Cheney will be attempting to do some kind of quantitative testing of XMRV viral load comparing pre-stem cell and post-stem cell. This is one of the reasons I suspected he would not be publishing stem cell results this summer. This should be interesting.

As for the research being done by GMA, I've seen the list of tests required. I think they are doing us an amazing favor by going out of their way to conduct research, but I have to voice my strong opinion that the selection of tests isn't sufficiently geared toward CFS. I know they see a lot of CFS patients at that clinic and are in communication with Dr. Cheney so I think it'd be a great idea for them to collaborate with Cheney and ask what an appropriate panel for CFS patients would consist of.

My personal opinion is that it should at least recommend for XMRV testing and NK cell panel.

GMA worked with Dr. Cheney, when they decided about the markers that where tested for. I think one goal of the study design, was to keep the costs for the patient as low as possible, so that as many people as possible can participate.
With their budget, they will not be able to make a "complete" study. I think the goal of their study is to show that some markers are changing so that they can raise the attention of more researchers.

I agree, that a study that tested for NK cell function appears better at this time, but unfortunately view participants are willing to pay for the test.

Best,
David

 

[mojoey]

That makes sense. A cheap way to pick up a little momentum in the right direction.

Thanks.

 

[richvank]

Input from Dr. Steenblock on stem cell treatment of CFS

Hi, all.

I received a recent response from Dr. David Steenblock to my question to him about any experience he might have had in treating CFS with stem cells. Dr. Steenblock has been doing stem cell treatments since November 2006, and has treated a variety of disorders. He has given me permission to share his views.

He responded as follows: "Frankly, I have had little experience with chronic fatigue with stem cells of any type. I recall one case of chronic chemical sensitivity that did well with umbilical cord cells but I don't remember having any other cases. In my personal medical practice experience of about 30 years I saw about 50% of these patients having chronic severe sinus infections that most of them would not believe me and would not take the antibiotics or surgery to get rid of it. Others have chronic stress induced stomach or other GI problems which causes a breach in their mucosa and the foreign substances entering their body activates their cytokines so they feel like they chronically have the flu. This often presents with no other symptoms and it is the rare doctor who will prescribe nexium and other anti-acid preps and put them on bland diets. All of these people should have a month treatment of this when nothing else has been found. So in general I have either cured them with the proper treatment or they have not believed me and gone off to find another doctor who will diagnose them with some other rare disease."

In a communication since the confirmation of the discovery of the retroviruses in CFS, he wrote "Hi, yes I saw the paper and now at least we do have some good evidence of the role of retroviruses. Before, the data was not reproducible as mentioned in the article, but the fact that patients with CFS are seeing improvements with three antiretroviral drugs is good news. Yes, you can use my comments."

In summing up his views on stem cell treatment of CFS, he wrote
"So I favor getting rid of all of the infections, metals and this new virus and when all else has failed then try stem cells. I would not use the fat stem cells but hematopoietic cellls so as to repair their endothelium. If they have auto immune problems then I would add the fat mesenchymal cells."

Best regards,

Rich

 

[Rrrr]

thanks for getting us steenblock's take on all this.

however, as you mentioned earlier, rich, people with cfs have a very hard time addressing the issues he says need to be addressed first (infections, metals) without us feeling a whole lot sicker in the process.

 

[richvank]

Hi, Rrrr.

Yeah, sometimes it sounds like one of those "you can't get there from here" type problems. There has to be a way through the maze, though. We just have to find it. Probably it involves building up the body's systems first, before doing treatments.

Rich

 

[mojoey]

Hey Rich,

Thanks for posting Dr. Steenblock's comments here. It would be great if Steenblock, Riordhan, Rader, and others started doing research on MLVs and XPR-1 receptor lacking stem cells, which would be the analogue to the CCR-5 receptor lacking stem cells that has cured several AIDS patients.

 

[Rrrr]

ditto what joey said!

also, we'll hear soon (in a few months) from dipic, and those others who are going to panama now, on any improvements (or lack there of). i am hopeful!

 

[jenbooks]

In order for that to work you'd have to use chemotherapy to wipe out your own stem cells, Joey.
However, gene therapy trials are going on to mimic the lack of the ccr5 receptor or downregulate it, along with other interventions to stop HIV from replicating. The ccr5 receptor is redundant so not having one is no big deal. Is the xpr1 receptor necessary for anything in the body?

Hey Rich,

Thanks for posting Dr. Steenblock's comments here. It would be great if Steenblock, Riordhan, Rader, and others started doing research on MLVs and XPR-1 receptor lacking stem cells, which would be the analogue to the CCR-5 receptor lacking stem cells that has cured several AIDS patients.

 

[Daffodil]

m0joey....may i ask where you heard that the CCR5 lacking stem cells cured several patients? i cannot find this info. i can only find the berlin patient.

thanks
sue

 

[mojoey]

Hey Jenbooks,

I posted some of my thoughts regarding the chemo in an exchange between Peggy and myself on the CFSMExperimental yahoo group. I got permission from her to post it here:

Hi Peggy,

Thanks for your response. My question is: were any AIDS patients cured with
stem cells before they did implantation with CCR5-receptor lacking stem cells
(to prevent cellular entry by HIV?)

Aren't retroviruses on a completely different plane from lyme because it uses
our own cells to replicate? Lyme exists and reproduces freely in the
bloodstream (and tissue etc) doesn't it? Drugs for drugs work by actually
killing lyme whereas drugs for retroviruses (as things stand) can only prevent
replication. (I know you know this I'm just thinking outloud for folks here)

So the relevance to stem cells would be that retroviruses would take new stem
cells as an opportunity to invade and replicate their own DNA. It has also been
established that they actually resides in certain white blood cell subsets,
therefore strengthening the immune system via hemopoetic stem cells could
theoretically be increasing the population of retroviruses.

The mechanism that stem cells works for lyme disease seems different to me.
Although the embedding of lyme into our DNA has been discussed in Cure Unknown,
that isn't the primary reproduction mechanism of lyme right? So I'm thinking
the stem cells strengthen immunity without increasing lyme tropism to a
dangerous level, giving the immune system the upper hand to deal with infectious
phases down the line.

The rub in all this is that EBV was shown to be cured by stem cells. EBV also
relies on our own cells for reproduction. One theory is that if your primary
infection is EBV without a retrovirus, it's simply not as virulent and the
immune system can easily gain the upper hand. It has been shown that EBV
combines with HERV K-18 to pack a powerful punch, and many CFS patients got sick
with mono but it's well-established by now that mono isn't the cause of this
subset of CFS but a trigger. So showing that a Chronic EBV patient was cured
from stem cells cannot be extrapolated to mean that a CFS patient with mono was
cured from stem cells.

Lastly, from my conversation with Christian Drapeau about getting a large amount
of stem cells via transplantation, I got the idea that there is a certain degree
of over-saturation of stem cells that occurs when you get that many (25-30
million) and that many stem cells will certainly return to the bone marrow
reservoir.

I had a few more thoughts if you don't mind:

In the EBV and HIV/AIDS cases you talked about, bone marrow suppression was done
(through chemo I assume?) So in these cases, wouldn't that actually lower the
chances of herpes viral and retroviral replication since existing WBCs have been
wiped out? That's one theory why rituximab worked on CFS patients, that the
b-cells were harbors for retroviruses.

I always thought XMRV repliation would be less of an issue if CFS patients were
able to underdo chemo beforehand. There have been several reports of cancer
patients with CFS improving their CFS symptoms post-chemo. Follow that with
immediate transplantation, get a new immune system without the retrovirus. You
do have the issue of opportunistic infection during the window, but cancer
patients manage to get around that for the most part.

There is of course, the problem of retroviruses lingering in the tissue or other
reservoirs, but that is the same problem that HAART patients deal with. Perhaps
then the ultimate solution will be XPR-1 receptor lacking stem cells since that
is how MLVs mediate cell entry.

--- In CFSFMExperimental@yahoogroups.com, Peggomatic@... wrote:
>
>
> I'm with Kay -- I guess I still don't understand how XMRV could infect stem
cells and cause further damage. If XMRV is infecting current cells, then went
on to infect stem cells, how would that be different from XMRV attacking ANY new
cells? If bone marrow is indeed a reservoir for XMRV, it doesn't follow that
externally implanted stem cells will migrate to the bone marrow: that would not
happen unless the existing bone marrow was wiped out by chemotherapeutic drugs,
correct?
>
> I do know that some believe stem cells are counterindicated if one has active
herpesviruses, but again I think that is primarily the case if one has had
chemotherapy to kill the bone marrow. I have also read that generally it is
best to wipe out existing infections as much as possible before beginning stem
cell treatments (i.e. with Lyme patients who are traveling to get stem cells),
but the Lyme patients receiving stem cells were not, of course, completely able
to eradicate Lyme which is notorious for hiding out in pockets of the body, and
at least one Lyme stem cell patient who keeps a blog mentioned that it was stem
cells that enabled her to reduce her antibiotic treatments without relapsing,
that improved her brain scans which were terrible pre-SC from the Lyme, etc. So
the theory that SC could wipe out infections seems realistic.
>
> Also, in the little research I could find on HIV/AIDS patients receiving stem
cells (after bone marrow suppression), the patients did not seem to rapidly
progress to more AIDS complications post-SC, so even with retroviruses I don't
know what there is to substantiate the idea that they are reinfecting the stem
cells and making patients worse. There was one paper about an HIV positive
patient who seroconverted to negative and stayed healthy as a result of stem
cell treatment.
>
> It seems the most likely action of stem cells in ME/CFS patients would be to
migrate to areas with long-standing tissue damage, which seems to be Kay's
experience (i.e. that they may have migrated and engrafted to areas with the
most tissue damage from ME/CFS, such as the heart).
>
> Lyme and other patients with infections are advised to treat the infections as
much as possible before SC treatment, but that seems to be Dr. Cheney's approach
as well with the artensuate he gives as a redox shifter. But Lyme and other
patients getting stem cells with active infections have never eradicated Lyme
before getting stem cell treatment, and they seem to be generally improving. I
am not sure what these doctors are using to support that idea that XMRV would be
different from Lyme or HIV or other infectious conditions that have been treated
with stem cells without the patients declining?
>
> Peggy